empowEAR Audiology Podcast
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Hosted by
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Frequency
Two times a month -
First Episode Date
August 12, 2020 -
Rating
"5" Stars -
Transcripts
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empowEAR Audiology
Communication is connecting. Join Dr. Carrie Spangler, a passionate audiologist with a personal hearing journey, as she interviews guests who are navigating their own professional or personal journey in the hearing loss world. If you want to be empowEARed or just want to hear some great hearing and listening advice, this podcast is for you!
Meet our Podcaster
Carrie Spangler
Audiologist, Mother, Wife, Advocate, Podcaster
About Me
Carrie Spangler, Au.D, CCC-A, is a dedicated professional in the field of educational audiology with over 20 years of experience. She also has a passionate personal journey of living successfully with hearing loss in this vibrant hearing world. Dr. Spangler has turned what many view as a “disability” into an “ability”.
In November 2019, she began her cochlear implant journey, which you can follow at hearingspanglish.blog. Empowering and helping others with hearing loss, families, and professionals is at the core of her daily work.
Dr. Spangler has numerous publications and has presented on topics related to educational audiology, advocacy, and peer supports at the state, national, and international levels. Dr. Spangler is also an active member of professional and service organizations.
empowEAR Audiology Podcast Reviews
I recommend this podcast! Great podcast about hearing conditions and audiology!
I'm a parent of a child with hearing loss. This is an extremely helpful podcast to learn from and be a good parent to my daughter.
I had so much fun with Carrie on her EmpowEAR Audiology podcast! We talked about itinerant teachers of the deaf and how we work to support our students with hearing loss! This was my first time being a podcast guest!! I feel like I could talk about being a TOD indefinitely so it was a really fun experience. Go check it out on Apple podcasts!
empowEAR Audiology Podcast Transcripts
Episode 71: empowEAR Audiology - Dr. Tori Ashton and Dr. Kristin Jolkowski
Announcer: [00:00:00] Welcome to episode 71 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. Welcome to the EmpowEAR Audiology podcast. I am so excited. I have two wonderful guests with me today as we kick off Educational Audiology Awareness Week for 2024. So first I have the president for the Educational Audiology Association Dr. Tori Ashton, and a little bit about Tori. She's in her 10th year as an educational audiologist with the Cooperative Educational Service Agency #4 in Wisconsin. She received a Bachelor of Science from the University of Wisconsin River falls and her Doctor of Audiology from the University of Wisconsin, Madison. She provided the educational audiology services to 12 school districts within a 60 mile radius. Tori is currently the president of EAA. As I've said before, and in addition to her role as president, she serves on many of the subcommittees within the Association, and in her free time, she enjoys her DIY projects, baking and reading. And I also have another wonderful EAA member with me today too, Dr Kristin Jolkowski, and she is an educational audiologist geologist serving southeast Nebraska. She received a Bachelor of Science degree in communication disorders from the University of Nebraska, Lincoln in 2004, and she received a Doctor of Audiology degree from the University of Nebraska, Lincoln in 2009. During her education, she was a research assistant at Boys Town National Research Hospital in Omaha, Nebraska, and then upon graduation, she worked at a busy otolaryngology clinic in Lincoln, Nebraska, serving patients of all ages. She found her passion for working with pediatric population and changed career setting to an educational audiologist in 2015. Kristin has a strong passion for interprofessional collaboration to improve outcomes for children who are deaf and hard of hearing. So Kristin and Tori, welcome to the podcast. I'm so excited to have you.
Kristin: [00:02:54] Thank you Carrie.
Carrie: [00:02:56] Yay! And as we kick off Educational Audiology Awareness Week, I would love, um, if one of you would just tell me if you want to just share a little bit about the Educational Audiology Association and why we are doing this.
Tori: [00:03:13] Yeah. So last year was actually our first year of celebrating, um, the Educational Audiology Association or not Association Awareness Week. Um, our goal with celebrating this week is to raise awareness about our services, hearing loss and students in the schools. Um, as well as just celebrating Ed AuDs in the work that we do.
Carrie: [00:03:38] Yeah. So I'm excited that we have this second year that we're, um, keep on doing this and raise that awareness. And I know that this year, um, we as an association really decided to focus in on, um, a couple of topics. One, just, you know, the general public and what educational audiologists do and how they impact in the schools. But we also took a deeper dive into hearing screenings. And I know most of our listeners will be familiar with this topic. But as we were talking a little before coming on the air, we all are from different states. And so how hearing screenings are done and impacted in different states is really diverse. So I guess one of my first questions for all of us, so we're kind of all on the same page is why would hearing screenings really be important for our school age kids?
Tori: [00:04:42] Um, I can kind of give like a broad.
Carrie: [00:04:44] That would be great.
Tori: [00:04:45] Answer to that one. Um, I think hearing screenings are essential for obviously identifying students with hearing loss, but I think especially those students who have been like, lost to follow up from newborn hearing screenings, or students who might have late onset hearing loss, as well as students who might experience fluctuating hearing due to middle ear, um, pathology. Um, I think hearing loss definitely can hinder academic performance. Um, and it can affect a student's ability to engage, comprehend and participate in the classroom.
Carrie: [00:05:21] Yeah. All very important reasons to, uh, screen for hearing and kind of like what you said. Um, you know, it can happen at any time. So just because they had a universal newborn hearing screening doesn't mean that later on they're not going to have difficulties with hearing, too. So, um, I guess just kind of thinking about it from a United States State perspective too. What is the current state of school based hearing screenings in the United States?
Kristin: [00:06:01] So I was looking at the American Speech and Hearing Association. They've got, um, some documents that talk about how the different states do things, and not every state actually mandates school hearing screenings yet. Um, they're still 7 or 8 states that have no requirement for hearing screenings in the schools at all. So we've got 37 states mandating it, about five that suggest it. But we still have, in my opinion, maybe too many states that just kind of let it be whatever people want it to be. And we all know that, you know, these students need to have that access to instruction to be able to make that growth in school. And so it's not something you can just observe and determine that hearing is impacting you. Really, the screening is vital to figuring that out.
Carrie: [00:06:52] Yeah, and I'm glad you brought that up, because I was just looking at our EIA awareness page online. And that is a link on the educational audiology awareness page. Is that map of the hearings? You know, the states that are actually have protocols in place and some that just suggest it and some of them that like you said, Kristin, are not doing it at all. So very interesting. But if I guess that takes me to the next question, would be those states that maybe are just suggesting doing it or not doing it and don't have any kind of hearing screening protocol in place, what would be that next step or what action steps need to take place?
Kristin: [00:07:52] So I think you have to find. Yeah, you have to find somebody who's got the gumption to kind of take on a project. And so, um, I think on the EAA page, I know the name. I can't remember what Ncam stands for. Can someone help me out?
Carrie: [00:08:09] Yes.
Carrie: [00:08:10] National Center for Hearing Care and Assessment, I think.
Tori: [00:08:14] Assessment and management.
Carrie: [00:08:16] Okay.
Carrie: [00:08:17] I was close.
Kristin: [00:08:17] So they're based in Utah, and I know that they do a lot to support with newborn hearing screenings and maybe like early childhood. And they've got some webinars, but I feel like they've got some good things to get like preschool kind of screenings in place that if you really need, I guess, a starting point, it has some training options to kind of figure out what equipment you might need, um, maybe even paperwork options on how to track it and that sort of thing. Um, school age wise, I think that's a bigger beast, because then you're dealing with the complexities of school districts and how to initiate that. But EAA, I think, has some information that can help support a why, if you need to bring that to the powers that be within your school district.
Carrie: [00:09:09] Yeah.
Carrie: [00:09:10] And it might be something too just from a legislative process to I can just speak for I live in Ohio and that was definitely it's a law. And, you know, there's laws and rules that indicate that, you know, different age levels and grade levels need to be screened in the state. So maybe another resource would be, um, again, with that ASHA link that it talks about the state hearing screening requirements and um, gives a whole list of all 50 states and what they're currently doing the as whatever state you happen to live in, you could look at that list and see exactly who you know, the ages and who can screen and all of those types of protocols, too. But I guess to kind of talking to both of you, what has been, I think, Tori, you said you live in a state that, um, doesn't have. It's just optional if they decide they want to do it or not. So what have been some of the barriers, do you think, for implementing a protocol?
Tori: [00:10:25] Um, I definitely think it's one of the major ones is we don't mandate it here in Wisconsin, so schools don't have to do them. Um, but in my experience, I found that other barriers have just been, um, resources. Some of my rural schools don't have the appropriate equipment to be able to even screen a student. Um, also, having trained people who are able to, um, complete a hearing, screening time has been a big one. Time, some of our schools have just one nurse or a health aide, and they can't get through all the students that would need to be screened. Um, so those are, I would say the major ones that I've seen is just resources, train people and then time overall to get them done. Um.
Kristin: [00:11:13] I would agree even Nebraska does mandate, but I think some of those barriers still exist that it is mandated. But it's very stressful because it's mandated because you don't always it's hard to find the time, and it's hard to find a spot in a building to actually do the screening and training. Um, all of that still becomes a, a burden that sometimes is hard to meet. We have to meet it because it's mandated, but it's still difficult.
Carrie: [00:11:50] Yeah.
Carrie: [00:11:51] And I guess, um. What could we, I guess, what is the why? I mean, like, I mean, do we go back to the why of why it's important to to do the, the hearing screening? Do you think that would make a difference if administrators or special ed coordinators or teachers understood from a crucial point of view why a kid sitting in a classroom who has unidentified hearing loss would be struggling?
Tori: [00:12:31] I definitely think so. I think I mean, hearing loss, not teachers don't always know as much or what to be looking for for a student who might have a hearing loss or are having trouble focusing in class. I think sometimes it just gets put onto being like an attention issue, when really it it might not be. So I think there's kids who have maybe been misdiagnosed or mismanaged, even in the school setting where, you know, had we done a hearing screening and identified that there was a hearing loss, their accommodations in the classroom and supports would probably look very different.
Carrie: [00:13:08] Mhm.
Kristin: [00:13:09] And I think the piece, just like with newborn hearing screenings, the I don't know if we say selling point, but the why and how you can help convince is the sooner you identify these hearing needs, the sooner you can put those accommodations and supports into place. And then the less impact that hearing loss has over time, which tends to save districts money because you don't have to put as big and as expensive as supports in and so trying to have that be a leading point if you're talking to. Um, administration or superintendents or legislatures about maybe a cost. Savings as a benefit can be a way to get the wheel moving a little bit faster.
Carrie: [00:13:59] Yeah. And I'm just looking at our infographic on the EAA website about. Hearing screenings. And it talks about the unaddressed hearing loss is expensive and like due to so due to the potential for academic underperformance and subsequent lost wages as adults. Unaddressed hearing loss can cost about $750 billion annually. So I mean, I know that's not per person, but still, if you look at it from that big like dollars and cents perspective, um, doing a what? Three minute hearing screening at a school can really save a lot of money in the long run.
Carrie: [00:14:43] Yeah.
Carrie: [00:14:45] And, eh, I guess if we kind of step back again in a perfect world. Um, let's just maybe talk about what hearing screening could or should look like within within the school type setting. Who would really be the ones doing the screenings, and what grades might you want to make sure that you're capturing?
Tori: [00:15:17] I think I most common ones that I've seen, if a school is doing a hearing screening, it's been the school nurse. Um, sometimes it's the SLPs. Um, I definitely think us as educational audiologists are the ones who can be completing hearing screenings, whether it's you partner up with your school nurse And SLP to get through students, or if that's a role that the educational takes on educational audiologist takes on themselves. Um, I also think that um, or like what grade levels the EAA or the Educational Audiology Handbook has a whole chapter on hearing screens as well. So that's another good resource to look into. But um, they've talked about, you know, like the early childhood age groups or like at Child Find. Some schools do those child find days before the kids come into school. Um, having hearing screenings done then um, at kindergarten, some of the other grades that were mentioned were first grade, third grade, fifth grade, seventh grade, or ninth grade as all options of populations that could be tested. Um.
Kristin: [00:16:31] I think that getting that early childhood, the preschoolers and the early elementary schoolers, because that's really where you want to there in those vital years of of learning to read and learning that language. And, um, you want to identify any hearing needs quickly in Nebraska mandates preschool for fourth grade every year they have to be screened, and then it becomes seventh grade and 10th grade. So it's a lot of that preschool elementary time. And then once in middle school, once in high school. But I think that that preschool early elementary, that's that's the the time you want to find this, you can put those supports in so that you can keep kids developing on track.
Carrie: [00:17:19] Yeah.
Tori: [00:17:19] I also think, um, another population to include a screening on is any student who is being evaluated for speech and language services. I definitely don't feel they should go through an evaluation without a hearing screening haven't been completed.
Kristin: [00:17:36] I would second that wholeheartedly. I even sometimes yeah, I sometimes even think, um, some of our kids that might have some behaviors in the school setting that I want them screened because I don't know if. Are they, are they having behaviors because they're not able to access and hear as well as they could? Attention, focus, all of that stuff. Speech, language, attention, focus, behavior, all of that.
Carrie: [00:18:07] Right.
Carrie: [00:18:09] Yeah. So essentially, any child that is being referred for any kind of specially designed instruction, um, would be good to do a hearing screening for.
Kristin: [00:18:24] Agreed. Yeah.
Carrie: [00:18:26] And then in Ohio, um, just a few years ago, we added 11th grade on. And it is interesting since we've added that on how many kids are being referred because of noise induced. So they're getting a little, you know, they're not passing at like 4000Hz. So it's interesting that we have this group of, uh, students who and the other end of the school age years who are not passing hearing screenings, too.
Kristin: [00:19:00] That is true. I kind of forget that they all hang out with their AirPods in and yeah, music cranked and loud music. Yes. Yeah.
Carrie: [00:19:11] So another awareness of uh, for educational audiologist is the impact of noise on hearing too. You kind of mentioned a couple of these things. Kristin, you mentioned like some of those kids who may, you know, have some behaviors within the classroom that may be kind of a red flag of, hey, have you checked out their hearing yet? Are there any other red flags for either parents or teachers that we should be thinking about? For kids who definitely should be screened for hearing?
Tori: [00:19:49] I think the probably the easiest and most common would be for those students who seem like they're daydreaming or not following along. Mhm. Um, articulate.
Carrie: [00:20:01] Yeah.
Kristin: [00:20:01] Articulation concerns. So if you are having trouble understanding a child's speech, sometimes the speech that's produced is related to the sound that they hear. So you want to rule out or rule in any hearing needs that could be impacting that. I'm going to throw out there. Um, and I don't know if this is sort of a tangent, but, um, our neurodiverse population, kids on the autism spectrum, I think, and I don't know the research that's there, but I think that they're later identified just because of the confounding nature, um, of just their development with the ASD diagnosis, that finding a way to have those kids screened for hearing.
Carrie: [00:20:51] Um, would.
Kristin: [00:20:52] Be good, too.
Carrie: [00:20:53] Yeah.
Carrie: [00:20:54] Because I think there's research that shows what, like 40% of kids who have additional needs have some sort of hearing loss. So whether it's conductive or sensorineural loss, um, that's probably a population that doesn't always get screened because they're more difficult to test. But it could definitely be impacting the bottom line of why communication is difficult or learning is difficult as well. I always think about our kids who are struggling to read and have any kind of phonological awareness like, well, are they hearing the sounds or are they not? So making sure that we're screening that population as well?
Carrie: [00:21:45] Definitely.
Carrie: [00:21:48] Well, let's just say that a student goes through a hearing screening process and they are a non-pass or they fail their hearing screening. What would be the next step of what would happen next? In a perfect world.
Tori: [00:22:10] Kristin, I want to turn to you since your state does mandate and mine doesn't.
Kristin: [00:22:14] So in in the utopia that I want, I guess that family would be notified that their child did not pass their hearing screening and given an array of contact information for an audiologist that they could contact and have a diagnostic hearing evaluation completed. And then whoever that audiologist was that completed the diagnostic would, you know, provide the resources for if they needed. Ent physician consultation, um, kind of what the next steps would be from there in regards to whatever the hearing findings were, that would be idealistic and they would do it in like two weeks and.
Carrie: [00:23:02] They'd.
Kristin: [00:23:02] Magically get into the ENT in a month. It would be great.
Carrie: [00:23:07] Yeah.
Carrie: [00:23:07] And then they would share the results back with the school.
Carrie: [00:23:11] Exactly.
Kristin: [00:23:12] Yes. They would. They would sign some releases of information where we could all collaborate together to support the student. Right. That would. That would be my utopia.
Carrie: [00:23:24] Yeah. I would.
Tori: [00:23:25] Even include, um, I have done it for some of my districts that are screening is they'll pull me in to do re screens. So any of the students who did not pass a few weeks later, they have me come in and re screen them. But then they also sometimes include like those difficult to test. So the students that they couldn't get tested, they'll ask me to test them as well. Um, so I even think, you know, waiting a few weeks and doing a re screen. And if they still are not passing, you know, you're notifying family again. I would notify them both times, but again that your child did not pass. And you know, here's what you need to do for follow up.
Kristin: [00:24:03] I would agree with that to our state. Um, at least with the districts I work with do like a two tiered screening. So they screen, wait a couple of weeks, screen again, and then would refer on after that. So yeah, because I think if you, I think having that two tiered kind of thing is important to keep the screening protocol and process from kind of going overboard and having a lot of kids that may pass the second time. Um, bogging down some of the community audiology availability.
Carrie: [00:24:43] Do either of you are you the next step sometimes in the process for more of an assessment if they don't pass a screen?
Tori: [00:24:56] I am. Um, sometimes it kind of depends. Sometimes they'll if they're in eval, they will add me on to the eval to do a full hearing assessment. Other times the districts with parent consent just ask me to come in and do more of an eval versus just a screen to get more information. And we go then then we go from there to see what we need to do. But now I would also say not in all cases.
Carrie: [00:25:25] Yeah.
Tori: [00:25:26] So I would kind of depends. Yeah.
Kristin: [00:25:28] I would kind of second what Tori said. So for students that didn't pass, but there's definite educational concerns and they're either doing like a mtss multi-tiered systems of support kind of intervention process, or they're moving into evaluation to look at that specialized special education situation. They'll bring me in most of the time. Um, for students where it doesn't seem to be impacting school yet, then it depends. Sometimes I get brought in and I become I've gone out and done rescreens or I've, um, contacted family to be kind of a more of a support of why it's important to follow up.
Carrie: [00:26:16] Yeah.
Carrie: [00:26:17] Yeah. Sometimes having that, I don't know more in in-depth testing at the school. And then if you have community connection with the clinical pediatric cardiologist at a hospital or clinic, we can help facilitate that conversation. And the importance, like what you just said with the parents of following up and why that next step is really critical in that hearing screening process. I was just trying to think, is there anything I missed with the hearing screening that we wanted to promote for Educational Audiology Awareness Week? I mean, I think we covered like the ages and why it's so crucial to have hearing screenings. And if you don't have it in your state, we have those resources on the website that really can help with advocacy and maybe getting moving the needle to more, um, screenings within within your state too. But yeah, just that foundation for literacy and phonemic awareness and academics. If they're missing auditory information within our classroom. Um, and then really involving us as educational audiologist to in that hearing screening process. Did I miss anything?
Kristin: [00:27:44] I can't think of anything. I feel like we kind of touched. We I think of the importance.
Carrie: [00:27:50] And.
Carrie: [00:27:51] I think it would be a great way to kind of plug into why educational audiologists are important for your school districts. To one of you guys want to give a little spiel about getting an educational audiologist or why you should have one on your team?
Carrie: [00:28:17] I mean.
Kristin: [00:28:18] That. Yeah. I'm going to defer to Tori.
Tori: [00:28:21] I will say Wisconsin does do a really good job at I mean, we have a number of educational audiologists throughout our state covering a lot of our, a lot of our state that most districts have access to an educational audiologist in some way, whether it's they're going through, you know, our state agencies that we have, um, we have some who have private practices that go into schools. Um, but I think sometimes for schools, it's we really need to advocate for our services and what we can do for them. Because I in my experience, most of the times, the schools don't really know all that we could provide for the students and not just students on IEPs, but students, you know, all of their students with like hearing screenings, but or, you know, classroom amplification systems or all things that we can cover and help districts with. But I think really just communicating with your administration on the different, different roles that we have in, in the schools and why, you know, yes, students might have clinical audiologists, but why do they also need a school audiologist? Is our roles differ a little bit but are also very similar?
Kristin: [00:29:41] I would agree Nebraska is pretty good with educational audiology in the more urban eastern side of the state because we're just a denser population. But, um, it's a little more sparse as we get to the more sparse rural part of our state. And I think, like you said, it's building that relationship with your school teams. I've even noticed that in my job, when I start to have more students in a building, then I also start to get like school psychologists reaching out to me like, oh, hey, I've got a question. And so it's that, um, when you're seen and your, your skills are seen, then people start using you more. And so it's hard for how do you, how do you build that in a place that doesn't have an educational ideology yet? Because I think if they did, then they see the value that we have and they start utilizing our services more, but it's building that capacity in the areas that don't have our profession as of yet.
Carrie: [00:30:46] Mhm. Yeah.
Carrie: [00:30:48] And I think in our state, um, I've really tried to network a lot with our partners, our speech language pathologist in the state, and they're in every school, uh, no matter what. And just really marketing and sharing like this is an IDEA related service and this is what I can do for you, to help you. And this is how you can help advocate for having an educational audiologist and within your district, or compact or whatever your school district is to. So yeah, I agree. Just getting out there, marketing and sharing all of the, um, different things that we can do for students, whether they are, um, for specially designed instruction or just students sitting in the classroom that need to be able to to listen every day and communicate.
Kristin: [00:31:52] And I think we have a nice role in supporting families, because clinical audiology, in my experience, has a much, uh, there are just time crunched. It's it's a time crunch kind of setting where I've spent time trying to really help parents understand all of the jargon that they got fed at the clinical audiology side. Um, while I think clinical audiology tries very hard to to help that be clear and understood, there's just that time crunch that changes where I can take a little bit more time to help parents have a better understanding of how their child's impacted and what the supports that could benefit them in that sort of thing.
Carrie: [00:32:37] Yeah, which is another great point, like our connections with our pediatric and clinical audiologist and how we can help bridge that gap together so that our students succeed. And how do you. Right. You know, they can help empower parents to to advocate for having that service within the school. So if we kind of close up today with our podcast, I thought I would ask, Tori. What do you what what can people find on the educational audiology web page to really celebrate Educational Audiology Awareness Week?
Tori: [00:33:24] Um, we have some different links to documents specifically about hearing screenings. I know we mentioned the one from ASHA. We linked to that. We have a few that EAA has created. Um, there's like fun coloring pages you can print off for your students. So if any Ed AuDs are, you know, seeing their students within that week, they have some, you know, fun activity that they could do with them. Um, different social media posts that, you know, you guys can put on your own pages to help promote educational audiology, um, awareness as well as hearing screenings. Um, I think too on our website, if a good document and I have used it, you know, in talking with school districts is our scope of practice. Um, again, every state is different. How it looks in every state might be slightly different, but that's a really nice overview of all of the things that we can do as educational audiologists. Um, another thing I was going to mention is that this week, um, and so the National Center for Hearing Assessment and Management, along with ASHA and EAA, we're kind of co-hosting a webinar, um, that's entitled In Identifying Children with Hearing Loss the Key Roles of an SLP and Educational audiologist, and evidence based screenings and follow ups. So if you can't catch that one live, um, it will be on NcHAM's website to view too. So I would definitely encourage anyone to do that resource or webinar.
Carrie: [00:35:05] Yay!
Carrie: [00:35:06] Well, yeah. So definitely visit the EdAuD.org website and I'll link that in the show notes as well. And if you are out there on social media, make sure you use the hashtag #edaudweek or hashtag #edaudadvocacy so that our resources can get shared by many, many others. So as we wrap up again, um, I just want to say thank you, Kristin and Tori for joining me and the empowEAR Audiology podcast. And as we kick off Educational Audiology Awareness Week. So thank you for joining.
Tori: [00:35:48] Thanks for having us.
Kristin: [00:35:50] Yes. Thank you.
Announcer: [00:35:51] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 71 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. Welcome to the EmpowEAR Audiology podcast. I am so excited. I have two wonderful guests with me today as we kick off Educational Audiology Awareness Week for 2024. So first I have the president for the Educational Audiology Association Dr. Tori Ashton, and a little bit about Tori. She's in her 10th year as an educational audiologist with the Cooperative Educational Service Agency #4 in Wisconsin. She received a Bachelor of Science from the University of Wisconsin River falls and her Doctor of Audiology from the University of Wisconsin, Madison. She provided the educational audiology services to 12 school districts within a 60 mile radius. Tori is currently the president of EAA. As I've said before, and in addition to her role as president, she serves on many of the subcommittees within the Association, and in her free time, she enjoys her DIY projects, baking and reading. And I also have another wonderful EAA member with me today too, Dr Kristin Jolkowski, and she is an educational audiologist geologist serving southeast Nebraska. She received a Bachelor of Science degree in communication disorders from the University of Nebraska, Lincoln in 2004, and she received a Doctor of Audiology degree from the University of Nebraska, Lincoln in 2009. During her education, she was a research assistant at Boys Town National Research Hospital in Omaha, Nebraska, and then upon graduation, she worked at a busy otolaryngology clinic in Lincoln, Nebraska, serving patients of all ages. She found her passion for working with pediatric population and changed career setting to an educational audiologist in 2015. Kristin has a strong passion for interprofessional collaboration to improve outcomes for children who are deaf and hard of hearing. So Kristin and Tori, welcome to the podcast. I'm so excited to have you.
Kristin: [00:02:54] Thank you Carrie.
Carrie: [00:02:56] Yay! And as we kick off Educational Audiology Awareness Week, I would love, um, if one of you would just tell me if you want to just share a little bit about the Educational Audiology Association and why we are doing this.
Tori: [00:03:13] Yeah. So last year was actually our first year of celebrating, um, the Educational Audiology Association or not Association Awareness Week. Um, our goal with celebrating this week is to raise awareness about our services, hearing loss and students in the schools. Um, as well as just celebrating Ed AuDs in the work that we do.
Carrie: [00:03:38] Yeah. So I'm excited that we have this second year that we're, um, keep on doing this and raise that awareness. And I know that this year, um, we as an association really decided to focus in on, um, a couple of topics. One, just, you know, the general public and what educational audiologists do and how they impact in the schools. But we also took a deeper dive into hearing screenings. And I know most of our listeners will be familiar with this topic. But as we were talking a little before coming on the air, we all are from different states. And so how hearing screenings are done and impacted in different states is really diverse. So I guess one of my first questions for all of us, so we're kind of all on the same page is why would hearing screenings really be important for our school age kids?
Tori: [00:04:42] Um, I can kind of give like a broad.
Carrie: [00:04:44] That would be great.
Tori: [00:04:45] Answer to that one. Um, I think hearing screenings are essential for obviously identifying students with hearing loss, but I think especially those students who have been like, lost to follow up from newborn hearing screenings, or students who might have late onset hearing loss, as well as students who might experience fluctuating hearing due to middle ear, um, pathology. Um, I think hearing loss definitely can hinder academic performance. Um, and it can affect a student's ability to engage, comprehend and participate in the classroom.
Carrie: [00:05:21] Yeah. All very important reasons to, uh, screen for hearing and kind of like what you said. Um, you know, it can happen at any time. So just because they had a universal newborn hearing screening doesn't mean that later on they're not going to have difficulties with hearing, too. So, um, I guess just kind of thinking about it from a United States State perspective too. What is the current state of school based hearing screenings in the United States?
Kristin: [00:06:01] So I was looking at the American Speech and Hearing Association. They've got, um, some documents that talk about how the different states do things, and not every state actually mandates school hearing screenings yet. Um, they're still 7 or 8 states that have no requirement for hearing screenings in the schools at all. So we've got 37 states mandating it, about five that suggest it. But we still have, in my opinion, maybe too many states that just kind of let it be whatever people want it to be. And we all know that, you know, these students need to have that access to instruction to be able to make that growth in school. And so it's not something you can just observe and determine that hearing is impacting you. Really, the screening is vital to figuring that out.
Carrie: [00:06:52] Yeah, and I'm glad you brought that up, because I was just looking at our EIA awareness page online. And that is a link on the educational audiology awareness page. Is that map of the hearings? You know, the states that are actually have protocols in place and some that just suggest it and some of them that like you said, Kristin, are not doing it at all. So very interesting. But if I guess that takes me to the next question, would be those states that maybe are just suggesting doing it or not doing it and don't have any kind of hearing screening protocol in place, what would be that next step or what action steps need to take place?
Kristin: [00:07:52] So I think you have to find. Yeah, you have to find somebody who's got the gumption to kind of take on a project. And so, um, I think on the EAA page, I know the name. I can't remember what Ncam stands for. Can someone help me out?
Carrie: [00:08:09] Yes.
Carrie: [00:08:10] National Center for Hearing Care and Assessment, I think.
Tori: [00:08:14] Assessment and management.
Carrie: [00:08:16] Okay.
Carrie: [00:08:17] I was close.
Kristin: [00:08:17] So they're based in Utah, and I know that they do a lot to support with newborn hearing screenings and maybe like early childhood. And they've got some webinars, but I feel like they've got some good things to get like preschool kind of screenings in place that if you really need, I guess, a starting point, it has some training options to kind of figure out what equipment you might need, um, maybe even paperwork options on how to track it and that sort of thing. Um, school age wise, I think that's a bigger beast, because then you're dealing with the complexities of school districts and how to initiate that. But EAA, I think, has some information that can help support a why, if you need to bring that to the powers that be within your school district.
Carrie: [00:09:09] Yeah.
Carrie: [00:09:10] And it might be something too just from a legislative process to I can just speak for I live in Ohio and that was definitely it's a law. And, you know, there's laws and rules that indicate that, you know, different age levels and grade levels need to be screened in the state. So maybe another resource would be, um, again, with that ASHA link that it talks about the state hearing screening requirements and um, gives a whole list of all 50 states and what they're currently doing the as whatever state you happen to live in, you could look at that list and see exactly who you know, the ages and who can screen and all of those types of protocols, too. But I guess to kind of talking to both of you, what has been, I think, Tori, you said you live in a state that, um, doesn't have. It's just optional if they decide they want to do it or not. So what have been some of the barriers, do you think, for implementing a protocol?
Tori: [00:10:25] Um, I definitely think it's one of the major ones is we don't mandate it here in Wisconsin, so schools don't have to do them. Um, but in my experience, I found that other barriers have just been, um, resources. Some of my rural schools don't have the appropriate equipment to be able to even screen a student. Um, also, having trained people who are able to, um, complete a hearing, screening time has been a big one. Time, some of our schools have just one nurse or a health aide, and they can't get through all the students that would need to be screened. Um, so those are, I would say the major ones that I've seen is just resources, train people and then time overall to get them done. Um.
Kristin: [00:11:13] I would agree even Nebraska does mandate, but I think some of those barriers still exist that it is mandated. But it's very stressful because it's mandated because you don't always it's hard to find the time, and it's hard to find a spot in a building to actually do the screening and training. Um, all of that still becomes a, a burden that sometimes is hard to meet. We have to meet it because it's mandated, but it's still difficult.
Carrie: [00:11:50] Yeah.
Carrie: [00:11:51] And I guess, um. What could we, I guess, what is the why? I mean, like, I mean, do we go back to the why of why it's important to to do the, the hearing screening? Do you think that would make a difference if administrators or special ed coordinators or teachers understood from a crucial point of view why a kid sitting in a classroom who has unidentified hearing loss would be struggling?
Tori: [00:12:31] I definitely think so. I think I mean, hearing loss, not teachers don't always know as much or what to be looking for for a student who might have a hearing loss or are having trouble focusing in class. I think sometimes it just gets put onto being like an attention issue, when really it it might not be. So I think there's kids who have maybe been misdiagnosed or mismanaged, even in the school setting where, you know, had we done a hearing screening and identified that there was a hearing loss, their accommodations in the classroom and supports would probably look very different.
Carrie: [00:13:08] Mhm.
Kristin: [00:13:09] And I think the piece, just like with newborn hearing screenings, the I don't know if we say selling point, but the why and how you can help convince is the sooner you identify these hearing needs, the sooner you can put those accommodations and supports into place. And then the less impact that hearing loss has over time, which tends to save districts money because you don't have to put as big and as expensive as supports in and so trying to have that be a leading point if you're talking to. Um, administration or superintendents or legislatures about maybe a cost. Savings as a benefit can be a way to get the wheel moving a little bit faster.
Carrie: [00:13:59] Yeah. And I'm just looking at our infographic on the EAA website about. Hearing screenings. And it talks about the unaddressed hearing loss is expensive and like due to so due to the potential for academic underperformance and subsequent lost wages as adults. Unaddressed hearing loss can cost about $750 billion annually. So I mean, I know that's not per person, but still, if you look at it from that big like dollars and cents perspective, um, doing a what? Three minute hearing screening at a school can really save a lot of money in the long run.
Carrie: [00:14:43] Yeah.
Carrie: [00:14:45] And, eh, I guess if we kind of step back again in a perfect world. Um, let's just maybe talk about what hearing screening could or should look like within within the school type setting. Who would really be the ones doing the screenings, and what grades might you want to make sure that you're capturing?
Tori: [00:15:17] I think I most common ones that I've seen, if a school is doing a hearing screening, it's been the school nurse. Um, sometimes it's the SLPs. Um, I definitely think us as educational audiologists are the ones who can be completing hearing screenings, whether it's you partner up with your school nurse And SLP to get through students, or if that's a role that the educational takes on educational audiologist takes on themselves. Um, I also think that um, or like what grade levels the EAA or the Educational Audiology Handbook has a whole chapter on hearing screens as well. So that's another good resource to look into. But um, they've talked about, you know, like the early childhood age groups or like at Child Find. Some schools do those child find days before the kids come into school. Um, having hearing screenings done then um, at kindergarten, some of the other grades that were mentioned were first grade, third grade, fifth grade, seventh grade, or ninth grade as all options of populations that could be tested. Um.
Kristin: [00:16:31] I think that getting that early childhood, the preschoolers and the early elementary schoolers, because that's really where you want to there in those vital years of of learning to read and learning that language. And, um, you want to identify any hearing needs quickly in Nebraska mandates preschool for fourth grade every year they have to be screened, and then it becomes seventh grade and 10th grade. So it's a lot of that preschool elementary time. And then once in middle school, once in high school. But I think that that preschool early elementary, that's that's the the time you want to find this, you can put those supports in so that you can keep kids developing on track.
Carrie: [00:17:19] Yeah.
Tori: [00:17:19] I also think, um, another population to include a screening on is any student who is being evaluated for speech and language services. I definitely don't feel they should go through an evaluation without a hearing screening haven't been completed.
Kristin: [00:17:36] I would second that wholeheartedly. I even sometimes yeah, I sometimes even think, um, some of our kids that might have some behaviors in the school setting that I want them screened because I don't know if. Are they, are they having behaviors because they're not able to access and hear as well as they could? Attention, focus, all of that stuff. Speech, language, attention, focus, behavior, all of that.
Carrie: [00:18:07] Right.
Carrie: [00:18:09] Yeah. So essentially, any child that is being referred for any kind of specially designed instruction, um, would be good to do a hearing screening for.
Kristin: [00:18:24] Agreed. Yeah.
Carrie: [00:18:26] And then in Ohio, um, just a few years ago, we added 11th grade on. And it is interesting since we've added that on how many kids are being referred because of noise induced. So they're getting a little, you know, they're not passing at like 4000Hz. So it's interesting that we have this group of, uh, students who and the other end of the school age years who are not passing hearing screenings, too.
Kristin: [00:19:00] That is true. I kind of forget that they all hang out with their AirPods in and yeah, music cranked and loud music. Yes. Yeah.
Carrie: [00:19:11] So another awareness of uh, for educational audiologist is the impact of noise on hearing too. You kind of mentioned a couple of these things. Kristin, you mentioned like some of those kids who may, you know, have some behaviors within the classroom that may be kind of a red flag of, hey, have you checked out their hearing yet? Are there any other red flags for either parents or teachers that we should be thinking about? For kids who definitely should be screened for hearing?
Tori: [00:19:49] I think the probably the easiest and most common would be for those students who seem like they're daydreaming or not following along. Mhm. Um, articulate.
Carrie: [00:20:01] Yeah.
Kristin: [00:20:01] Articulation concerns. So if you are having trouble understanding a child's speech, sometimes the speech that's produced is related to the sound that they hear. So you want to rule out or rule in any hearing needs that could be impacting that. I'm going to throw out there. Um, and I don't know if this is sort of a tangent, but, um, our neurodiverse population, kids on the autism spectrum, I think, and I don't know the research that's there, but I think that they're later identified just because of the confounding nature, um, of just their development with the ASD diagnosis, that finding a way to have those kids screened for hearing.
Carrie: [00:20:51] Um, would.
Kristin: [00:20:52] Be good, too.
Carrie: [00:20:53] Yeah.
Carrie: [00:20:54] Because I think there's research that shows what, like 40% of kids who have additional needs have some sort of hearing loss. So whether it's conductive or sensorineural loss, um, that's probably a population that doesn't always get screened because they're more difficult to test. But it could definitely be impacting the bottom line of why communication is difficult or learning is difficult as well. I always think about our kids who are struggling to read and have any kind of phonological awareness like, well, are they hearing the sounds or are they not? So making sure that we're screening that population as well?
Carrie: [00:21:45] Definitely.
Carrie: [00:21:48] Well, let's just say that a student goes through a hearing screening process and they are a non-pass or they fail their hearing screening. What would be the next step of what would happen next? In a perfect world.
Tori: [00:22:10] Kristin, I want to turn to you since your state does mandate and mine doesn't.
Kristin: [00:22:14] So in in the utopia that I want, I guess that family would be notified that their child did not pass their hearing screening and given an array of contact information for an audiologist that they could contact and have a diagnostic hearing evaluation completed. And then whoever that audiologist was that completed the diagnostic would, you know, provide the resources for if they needed. Ent physician consultation, um, kind of what the next steps would be from there in regards to whatever the hearing findings were, that would be idealistic and they would do it in like two weeks and.
Carrie: [00:23:02] They'd.
Kristin: [00:23:02] Magically get into the ENT in a month. It would be great.
Carrie: [00:23:07] Yeah.
Carrie: [00:23:07] And then they would share the results back with the school.
Carrie: [00:23:11] Exactly.
Kristin: [00:23:12] Yes. They would. They would sign some releases of information where we could all collaborate together to support the student. Right. That would. That would be my utopia.
Carrie: [00:23:24] Yeah. I would.
Tori: [00:23:25] Even include, um, I have done it for some of my districts that are screening is they'll pull me in to do re screens. So any of the students who did not pass a few weeks later, they have me come in and re screen them. But then they also sometimes include like those difficult to test. So the students that they couldn't get tested, they'll ask me to test them as well. Um, so I even think, you know, waiting a few weeks and doing a re screen. And if they still are not passing, you know, you're notifying family again. I would notify them both times, but again that your child did not pass. And you know, here's what you need to do for follow up.
Kristin: [00:24:03] I would agree with that to our state. Um, at least with the districts I work with do like a two tiered screening. So they screen, wait a couple of weeks, screen again, and then would refer on after that. So yeah, because I think if you, I think having that two tiered kind of thing is important to keep the screening protocol and process from kind of going overboard and having a lot of kids that may pass the second time. Um, bogging down some of the community audiology availability.
Carrie: [00:24:43] Do either of you are you the next step sometimes in the process for more of an assessment if they don't pass a screen?
Tori: [00:24:56] I am. Um, sometimes it kind of depends. Sometimes they'll if they're in eval, they will add me on to the eval to do a full hearing assessment. Other times the districts with parent consent just ask me to come in and do more of an eval versus just a screen to get more information. And we go then then we go from there to see what we need to do. But now I would also say not in all cases.
Carrie: [00:25:25] Yeah.
Tori: [00:25:26] So I would kind of depends. Yeah.
Kristin: [00:25:28] I would kind of second what Tori said. So for students that didn't pass, but there's definite educational concerns and they're either doing like a mtss multi-tiered systems of support kind of intervention process, or they're moving into evaluation to look at that specialized special education situation. They'll bring me in most of the time. Um, for students where it doesn't seem to be impacting school yet, then it depends. Sometimes I get brought in and I become I've gone out and done rescreens or I've, um, contacted family to be kind of a more of a support of why it's important to follow up.
Carrie: [00:26:16] Yeah.
Carrie: [00:26:17] Yeah. Sometimes having that, I don't know more in in-depth testing at the school. And then if you have community connection with the clinical pediatric cardiologist at a hospital or clinic, we can help facilitate that conversation. And the importance, like what you just said with the parents of following up and why that next step is really critical in that hearing screening process. I was just trying to think, is there anything I missed with the hearing screening that we wanted to promote for Educational Audiology Awareness Week? I mean, I think we covered like the ages and why it's so crucial to have hearing screenings. And if you don't have it in your state, we have those resources on the website that really can help with advocacy and maybe getting moving the needle to more, um, screenings within within your state too. But yeah, just that foundation for literacy and phonemic awareness and academics. If they're missing auditory information within our classroom. Um, and then really involving us as educational audiologist to in that hearing screening process. Did I miss anything?
Kristin: [00:27:44] I can't think of anything. I feel like we kind of touched. We I think of the importance.
Carrie: [00:27:50] And.
Carrie: [00:27:51] I think it would be a great way to kind of plug into why educational audiologists are important for your school districts. To one of you guys want to give a little spiel about getting an educational audiologist or why you should have one on your team?
Carrie: [00:28:17] I mean.
Kristin: [00:28:18] That. Yeah. I'm going to defer to Tori.
Tori: [00:28:21] I will say Wisconsin does do a really good job at I mean, we have a number of educational audiologists throughout our state covering a lot of our, a lot of our state that most districts have access to an educational audiologist in some way, whether it's they're going through, you know, our state agencies that we have, um, we have some who have private practices that go into schools. Um, but I think sometimes for schools, it's we really need to advocate for our services and what we can do for them. Because I in my experience, most of the times, the schools don't really know all that we could provide for the students and not just students on IEPs, but students, you know, all of their students with like hearing screenings, but or, you know, classroom amplification systems or all things that we can cover and help districts with. But I think really just communicating with your administration on the different, different roles that we have in, in the schools and why, you know, yes, students might have clinical audiologists, but why do they also need a school audiologist? Is our roles differ a little bit but are also very similar?
Kristin: [00:29:41] I would agree Nebraska is pretty good with educational audiology in the more urban eastern side of the state because we're just a denser population. But, um, it's a little more sparse as we get to the more sparse rural part of our state. And I think, like you said, it's building that relationship with your school teams. I've even noticed that in my job, when I start to have more students in a building, then I also start to get like school psychologists reaching out to me like, oh, hey, I've got a question. And so it's that, um, when you're seen and your, your skills are seen, then people start using you more. And so it's hard for how do you, how do you build that in a place that doesn't have an educational ideology yet? Because I think if they did, then they see the value that we have and they start utilizing our services more, but it's building that capacity in the areas that don't have our profession as of yet.
Carrie: [00:30:46] Mhm. Yeah.
Carrie: [00:30:48] And I think in our state, um, I've really tried to network a lot with our partners, our speech language pathologist in the state, and they're in every school, uh, no matter what. And just really marketing and sharing like this is an IDEA related service and this is what I can do for you, to help you. And this is how you can help advocate for having an educational audiologist and within your district, or compact or whatever your school district is to. So yeah, I agree. Just getting out there, marketing and sharing all of the, um, different things that we can do for students, whether they are, um, for specially designed instruction or just students sitting in the classroom that need to be able to to listen every day and communicate.
Kristin: [00:31:52] And I think we have a nice role in supporting families, because clinical audiology, in my experience, has a much, uh, there are just time crunched. It's it's a time crunch kind of setting where I've spent time trying to really help parents understand all of the jargon that they got fed at the clinical audiology side. Um, while I think clinical audiology tries very hard to to help that be clear and understood, there's just that time crunch that changes where I can take a little bit more time to help parents have a better understanding of how their child's impacted and what the supports that could benefit them in that sort of thing.
Carrie: [00:32:37] Yeah, which is another great point, like our connections with our pediatric and clinical audiologist and how we can help bridge that gap together so that our students succeed. And how do you. Right. You know, they can help empower parents to to advocate for having that service within the school. So if we kind of close up today with our podcast, I thought I would ask, Tori. What do you what what can people find on the educational audiology web page to really celebrate Educational Audiology Awareness Week?
Tori: [00:33:24] Um, we have some different links to documents specifically about hearing screenings. I know we mentioned the one from ASHA. We linked to that. We have a few that EAA has created. Um, there's like fun coloring pages you can print off for your students. So if any Ed AuDs are, you know, seeing their students within that week, they have some, you know, fun activity that they could do with them. Um, different social media posts that, you know, you guys can put on your own pages to help promote educational audiology, um, awareness as well as hearing screenings. Um, I think too on our website, if a good document and I have used it, you know, in talking with school districts is our scope of practice. Um, again, every state is different. How it looks in every state might be slightly different, but that's a really nice overview of all of the things that we can do as educational audiologists. Um, another thing I was going to mention is that this week, um, and so the National Center for Hearing Assessment and Management, along with ASHA and EAA, we're kind of co-hosting a webinar, um, that's entitled In Identifying Children with Hearing Loss the Key Roles of an SLP and Educational audiologist, and evidence based screenings and follow ups. So if you can't catch that one live, um, it will be on NcHAM's website to view too. So I would definitely encourage anyone to do that resource or webinar.
Carrie: [00:35:05] Yay!
Carrie: [00:35:06] Well, yeah. So definitely visit the EdAuD.org website and I'll link that in the show notes as well. And if you are out there on social media, make sure you use the hashtag #edaudweek or hashtag #edaudadvocacy so that our resources can get shared by many, many others. So as we wrap up again, um, I just want to say thank you, Kristin and Tori for joining me and the empowEAR Audiology podcast. And as we kick off Educational Audiology Awareness Week. So thank you for joining.
Tori: [00:35:48] Thanks for having us.
Kristin: [00:35:50] Yes. Thank you.
Announcer: [00:35:51] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 70: empowEAR Audiology - Dr. Matthew Barker
Announcer: [00:00:00] Welcome to empowEAR Audiology with Dr Carrie Spangler.
Carrie: [00:00:12] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right, Dr. Barker it is so good to have you back for part two of this podcast talking about auditory processing deficits and disorders. And we talked in part one. If you haven't listened yet, please go back and listen to the first recording with Dr Barker because we really dove deep into, you know, what auditory processing is. And, kind of the foundation of why auditory processing skills are important and how to test for them and who to test. And now we're going to dive a little deeper into what's next. So a student or an individual gets tested Matt. And we find that they have a deficit or an area that is of need for auditory processing. What can we do next?
Matt: [00:01:37] That is a fantastic question. Um, so the there have been quite a few approaches to the auditory processing field to date. Um, all of them share. One kind of common quality is when you do the test battery that you perform, whether that be sort of some automated testing or some CD based testing or some audio testing through audiometric equipment. Um, the one sort of theme that is consistent through all of the approaches is once you discover where the concerns are in your student or client, those are really the areas that you need to target for intervention. So which makes perfect sense. If you go get some blood work done at the doctor, if there are some issues, they don't just give you random random interventions for. If you don't have low blood pressure, you better not be taking low blood pressure medicine. Right, right. So it's kind of the same for for all of the approaches is before you treat an auditory deficit, you need to discover what those deficits are. Mhm. Um and then focus in on those deficits with, with you can do home based therapy. You can do therapy through computer programs. You can do therapy through a clinical audio audiometer in a sound booth. You can do therapy in a language evaluation. So the first step is discovering okay what are the deficits. And some people say how do you treat auditory processing. And my my response is well which area. Where is it down. There's no like here's a program that fixes auditory processing because there are so many areas that that can be deficient or underdeveloped. You only really need to target what's down.
Carrie: [00:03:51] Um, which is my next question. Like what would those areas typically be for auditory processing that you would be intervening.
Matt: [00:04:00] Okay. Yep. So I would probably say there's three more prominent areas that that we test for, um, that seem to be surfacing again and again and again in the studies of if these areas are deficient, then you're going to see difficulties with language, with reading, and with classroom learning. Um, I there has not been enough data to say of the three, which is the most prominent, but the the most in my experience. And again, I'll have data on this later. But in my experience, the most prominent one is what we call a dichotic listening deficit. Now, there's a lot of confusion about this particular topic, because what we do in the testing Room is we create an environment under headphones that requires the listener to use the part of their brain that communicates between the left and right hemisphere. We call it the corpus callosum. Um, and to to. So we have pathways in our brain that go from the right ear up to the right side of the brain, and we have pathways that go from the left ear up to the left side of the brain. But those are not the major pathways. The biggest pathways go from your left ear to the right side of the brain, and your right ear to the left side of the brain. So what we've discovered is if you, um, place a, uh, some headphones on an individual and you, you give them auditory information in the right ear at the same time, you give them auditory information in the left ear.
Matt: [00:05:58] And when you do that, it suppresses those ipsilateral pathways. So you don't go from the left ear up to the left side of the brain or the right ear to the right side of the brain. You go contralateral. So it suppresses the the straight up pathways. And it uses the pathways that go across the brain. Now when we do that, when we present information like that, it requires the individual to get, um, uh, sorry to get that information from both sides over to the other side as well. So you have to use that corpus callosum. Now when the individual gets the information on both ears, if they have very quick neural speed, like the information is able to be transmitted at a normal neural rate, they can transmit that information back and forth so quickly they can understand both sides. They can use the information from both years when they can't use that information quickly, then, um, the the individual loses one side or the other, and there's sort of often there's a righty or advantage if the, if the information is language that you're, if you're giving words in each year, then there's often a right or advantage. But people that see a left ear advantage often think, oh my gosh, the it's the ear that's down. And that's not the case at all.
Matt: [00:07:31] Actually, what we're testing is the pathway in between the brain. So regardless of which ear is down, the transmission speed of the corpus callosum is really what you're testing. So there's there seem to be a bit of an emphasis on focusing on which ear it is. That's down and in in answer, it doesn't matter if it's the left ear on the testing that shows that it's down or the right ear, or both. It means that their transfer of information from both sides of their brain across to the other side, is happening too slow for them to retain the information as a unit and then they can't cope with it. So, um, very rarely in life would you have information coming into your left ear and very different information coming in your right ear. So it's literally just so we can measure that, that interhemispheric transfer speed. Um, but those kiddos that we talked about in our last meet up, that was so much fun. Um, the the the kiddos that have these slow, um, corpus callosum speeds in that neural transmission have dichotic listening deficits and testing, and they're the ones that are struggling or some of the ones that are struggling with language and struggling with reading. And we found 10% of them in in every single class, 10% had a dichotic listening deficit. So I wouldn't say it's the most important, but it seems to be one of the most commonly discovered or commonly seen deficits for whatever reason, whether it be environmental, whether it be, you know, genetic or what, but maybe a combination of both.
Matt: [00:09:24] But there's definitely a prominence in, in dichotic listening. If I had to guess, I would think the probably one of the next most prominent is kind of that localization, spatial hearing, where using your ability to focus on where somebody that you're talking to is coming from versus like, if you're in a restaurant or if you're in a classroom and you're trying to hear the teacher, even though you've got Sally Mae or whoever else. So off to the side talking to their neighbor. Using your ability to focus on where the the speech is coming from. They call that spatial hearing. Um, some don't have the capacity to use that information to really be able to focus well on what they're trying to hear. And there is some great work out of out of Australia. Um, uh, the NAL lab down there, Dr Harvey Dillon and kind of his brainchild, uh, has developed really effective ways to improve using your localization or your spatial hearing so that you can actually focus really well on what you're trying to target, and not so much, um, what you're what you're trying to dismiss. And I think that's probably like, we didn't even have that test. I was going in grad school just to sort of give your listeners how how far we're coming with that, but they have an intervention for that.
Matt: [00:11:05] Um, it's computer based. You can actually do this as a speech therapist in clinic with varying sound sources as well. Like it's it's kind of easy to do if you're already doing clinic, you can do it manually where you have, um, uh, some, some target sounds, whether that be the speech therapist reading a book with the individual. And you can be playing a radio off to the side and to make it more challenging, you sort of just slowly bring that radio up without you bringing stuff up and just training that in a routine fashion. They learn how to focus on where they want to focus, and by doing that, we can suppress information from other locations. So this was I had you know, in life you have those aha moments. Right. So when we I was in psychoacoustics class, I was still of the sort of elementary understanding where, you know, you have your motor systems and you have your sensory systems. And I was, you know, you're taught your ear is a sensory system. And by and large that's true. But when we go to grad school, we're actually taught actually we, we go, sorry. Um, kids, actually, um, we use that information to suppress our ear. So our ear has all these amplifiers in it that take sound that we want to hear, and it boosts it up.
Matt: [00:12:51] It actually amplifies that information. But in the scenario we were talking about where you're in a classroom where you're trying to focus on on the teacher and ignore all the extraneous noise around you. We actually have the ability to un amplify or suppress those listeners that were not focused on, but individuals that don't have that skill are really going to struggle. So Dr Harvey Dillon and his team have shown that actually, if you if you have a dedicated, um, regimen where you just slowly work on that skill, they get much better. And then when the time comes, they can focus on what they're trying to listen to and, and avoid avoid the other. Um, I didn't mention, but I will say now that the dichotic listening deficits are treatable too, and they're treatable in a variety of ways as well. For just for your listeners. So that's that. Those, I think, are probably some of the most prominent areas that we've sort of are finding that are really hindering development. If I had to pick a third one and again there's so many, but the third one would be what I call just auditory patterning. So a good example of this. In fact it's it's almost better example than I need. But um if there are individuals that have been trained Morse code.
Matt: [00:14:29] Mhm.
Matt: [00:14:30] They can take that code and turn it into language. So when I say auditory patterning, language is literally just a pattern of sounds. So if I say car r r right. In that order you hear car. If I take that order and I flip it around and I say R a Rack. Rack. The sounds are identical. I've just changed the order of them, and that changes the meaning. So in auditory processing, what we try to do is say, well, yeah, but that's language. That's using speech sounds. What if we test that ability to follow patterns without speech sounds. So in the case of Morse code you actually only have two stimuli. That's it. You have a short beep and a long beep. And the order in which you put those like Soas is is long, short, long I think like, no, it's dee dee dee dee dee dee dee dee dee dee dee like it's short short short long long long short short short. So that's soas um, I learned that from the dishwasher. Uh, commercial. Um, um, so, so to somebody that knows Morse code, if they hear that, they're like, oh, Soas That's SOS. They're giving me a signal. Whereas in in an auditory processing assessment, we might just tell them. Okay, tell me what you hear. I'm going to play you some sounds and you could say something like doo doo doo doo.
Matt: [00:16:06] So the individual would need to say long, long, short. Or often we use pitches instead of duration. So we can say or high high low right. So they can hum it. Mhm. Mhm. If they struggle to follow sounds that aren't language. So they're not speech sounds, they're just nonlinguistic sounds. Why are we surprised then that they're struggling with language which is just phonemes put in a specific order. So what we found is ah, they're they, they're phonemic classification is fine. Like they can tell the difference between mhm and buh But but the order in which those sounds are coming, they're struggling to put in place. So what we found is if we train the ability to follow nonlinguistic sounds, they can then follow linguistic sounds in patterns more successfully as well. And we see a big improvement in language development and reading development. And let me be I want to be very clear with the studies that I've seen in no study has an auditory processing deficit been administered where you see benefits in reading and there not be reading intervention as well. So an auditory deficit needs treatment, but that doesn't mean it replaces the language therapy or the reading intervention. Both of those are still needed, but the auditory intervention will make your success with those therapies faster and and you get higher scores.
Matt: [00:17:55] Um, so it I want to be very clear. Auditory processing deficits do not replace reading intervention or language intervention. That's it's they're literally on one continuum in that pathway. And we need to be looking at all of it from from the ear all the way up to Wernicke's area. Um, so we need both audiology and speech language therapy. Um, as a group. And I know that we've talked about sort of multi-professional teams. That's true. Uh, but in reality, that's hard to make work. There's not a whole lot of audiologists that do auditory processing work. Um, there's often cases where, um, you don't have, uh, educational psychology available. So if I was a, for example, a speech pathologist and I'm like, well, I hear what you're saying, I understand that I really should be incorporating some more auditory processing testing. I'm not an audiologist. How can I diagnose it? Well, as it my advice to you would be if you can partner with an audiologist. Fantastic. If you can't find those handful that exist that are happy to do that, um, you can test for deficits that is within your scope of practice. Absolutely. Even though you can't label a diagnosis, that doesn't mean you can't, um, discover deficits and intervene for those deficits. That's absolutely within your scope of practice.
Matt: [00:19:36] So I know the the first time I had parents ask me, I did all this testing in grad school and, um, I was explaining all the results, and I was really proud of myself because I sort of explained what we did and how they did. And, you know we found these areas of concern? And I was looking at the parents and they said, okay, what are we going to do about it? Like what's what's the point of of all this testing if we can't intervene? And I looked over there, their son and I thought, that's a genius question. Why have I not asked this in class like, well, okay, great. What's all this testing? What are we going to do about it. Mhm. Um, and that was really the, the impetus for pushing forward with why don't we make ways to treat these interventions. And I know I've been told like you've got it, you've got it for good. Well why don't we test those waters. Let's see if we can actually improve these skills. And if we can fantastic. Then we can actually focus more energy and time on if we intervene on skill. A, do we see a significant benefit in their life, whether it be educationally or socially or whatever? Or if not, well, what about skill B is that does that seem to be more impacted in their life? And I feel like that's where we are now.
Matt: [00:21:04] It's not that deficits occur and can you improve those deficits. Now we're trying to hone in on what's important. What do we really need to highlight for intervention or for discovering those deficits. What do we need to focus on. Like do we need a two hour battery to discover what we need to do, or can we do this in a more efficient manner? So yeah, I think our profession is really at an exciting part where we're we're finding we can improve stuff. So well, what happens if we improve localization? What happens if we improve these auditory patterning abilities? What happens when we improve that dichotic listening that interhemispheric transfer speed. What happens when we we improve that spatial awareness. And there are there are other areas like phonemic classification. Like if somebody can't distinguish in their brain the difference between A and A, that is going to really be difficult for them to parse when they're hearing language spoken at normal rates. So you have to sort of delve into where are these developmental milestones, strong or not milestones areas and where are they underdeveloped. And you sort of create a recipe for that individual as you, as you would for any other health issue.
Matt: [00:22:37] Right?
Carrie: [00:22:38] Yeah. And I mean, for those of us that do have educational audiologists working within the schools, um, I know personally like the power of having that collaborative team to kind of look at the whole child and then individualize what that student needs based on the results that we can get from an audiological perspective. But then also, like you said, the the psychologist and the intervention specialist and the speech language pathologist, all of them bring that important piece. And if you can, um, meet the need through what are those deficit areas for auditory processing through some of the intervention programs that you're talking about? Like how does how does that look for the outcome for that child in the classroom and with reading and more of those life functioning skills? Because that's what we want. We want them to be successful and how can we help them? Does that sound about right?
Matt: [00:23:35] Yeah, absolutely. Yeah. And and there's you have to blossom where you're planted is how my mom would say it. So if you're at a location where you have, like, an amazing Dr Carrie Spangler, or others. Um, that that can help on a team to do, to really hone in on where their expertise lies. And you have educational psychology and speech language, uh, specialists or um, or any other OTs like other. If you have a access to multiple professionals, it just gives you a better ability to know exactly how or prioritize in certain scenarios. Really, what you're wanting to focus on with, with that student in that in where they are. But you're you're absolutely right when you can intervene accurately. So you're sort of not just doing, let's just do general therapy here. Well, no, we know where the deficits are. We know where we need to target in your trajectory of success just increases for those students. And when you see that and see how well they've struggled for two years with developing reading, for example, I've heard this time again and again and again and we finally intervene with the auditory portion. And there's their gains in reading. Just go from a slow hill to a mountain in trajectory, and the parents are like, why haven't, you know, this is fantastic. We're actually seeing progress. The students get excited because they've been hitting their head against the wall. They're trying. It's not like there's a lack of of effort. They just think they're they're they're not a smart enough to do it, which is not the case.
Matt: [00:25:33] We just need to re redesign how they're processing that information and then voila, they can really shine and develop. And it's that's the goal. The goal is like let's target where we see these deficiencies and and also target the higher level stuff. You know like there's top down things there's attention if there's attentional difficulties those need addressed. There's working memory that, you know, if there's a working memory component is your auditory processing testing be affected from that. So all of these things have to be kept in mind whether you're lucky enough to be, um, working alongside psychology and audiology and speech therapy and others or you're, uh. Look, I'm, I'm the only professional at my district. We're a small school. Well, then you just have to do your best to try to fill in the gaps as good as you can. You like just saying. Well, I just won't do any auditory processing work or I won't do any. I won't check for any, um, cognitive abilities or any working memory skills. It's if it's in your scope. Don't be afraid to go out there. Even if you can't diagnose ADHD. You can still do some some measures to determine actually, there's some some concerns with attention here. And use that information to really, um, modify your approach for, for the students. There's there's no one approach to fix everybody. You need to have a deficit specific approach. So the more information that you can garner, the more accurate your deficit specific treatment will be for that individual. So yeah, fun times.
Carrie: [00:27:26] Exciting times. Well, I think what excites me so much is the fact that, um, we can get deeper into what their deficit areas are. We know that having that strong foundation for auditory skills is so important from a bottom up perspective. But then the impact that it has on reading and language and classroom performance. And if you develop some therapy, you know, specific programs to acoustic pioneer. And I know other companies have to to really like kind of just target those areas so that we can see the success. So we, we no longer can say like we can't do anything about it. We can't. And so that's the exciting part. I know we've talked a lot today, um, about auditory processing and therapy and things like that, but I want to give you just a chance to say, like, did I miss anything? Is there anything that, like, you wished I would have maybe asked that you wanted to maybe summarize? And then I also want you to share a little bit, um, how people can get Ahold of you and, um, where to find you, too?
Matt: [00:28:45] Sure. Sure. Let me start with that before I forget. So if. If you would like to get a hold of me, you can call me directly. My number is (806) 424-3436. You can call or text me if I'm not available. Just leave a message. Uh, you can email me at info info at Acoustic pioneer.com. And then there's all of course, the social media, the Facebook, the Instagram, all that sort of stuff we can check as well. Um, but yeah, email me, call me. I promise I don't bite. I try. I'm a friendly guy.
Matt: [00:29:24] So yeah, very responsive.
Carrie: [00:29:27] And what I can do is I can link all that information in the show notes, too, so people can go to the show notes and find that information as well.
Matt: [00:29:36] Perfect, perfect. No. Like, Carrie, this has been so fun. Like this is literally one of my favorite topics. So inviting me to come talk about one of my favorite topics since I was a little boy. It was almost like Christmas morning.
Matt: [00:29:48] Today I'm like, yay me!
Matt: [00:29:51] And how much it helps others if it. If intervention is needed.
Carrie: [00:31:19] Well, I just appreciate your time today because I know this is such an exciting topic and your excitement shines through. So I know you have so much passion, um, and you have done so much to advance this part of the field and to the way you explain things. It makes it very applicable to real life for students and those that we are seeing in the school and what that impact is. So I think a lot of people will be excited to hear this interview today and get started wherever they can, and kind of just make an impact with students within the school, because as you said earlier, probably about 10% of those students sitting in the classroom have some sort of auditory processing deficit, which is impacting how they read, learn, process, language and some other things that impact the classroom learning or listening. So again, Matt, thank you so much for being a part of today's interview on the empowEAR audiology podcast.
Matt: [00:32:25] Fantastic. Thank you.
Announcer: [00:32:27] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to empowEAR Audiology with Dr Carrie Spangler.
Carrie: [00:00:12] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right, Dr. Barker it is so good to have you back for part two of this podcast talking about auditory processing deficits and disorders. And we talked in part one. If you haven't listened yet, please go back and listen to the first recording with Dr Barker because we really dove deep into, you know, what auditory processing is. And, kind of the foundation of why auditory processing skills are important and how to test for them and who to test. And now we're going to dive a little deeper into what's next. So a student or an individual gets tested Matt. And we find that they have a deficit or an area that is of need for auditory processing. What can we do next?
Matt: [00:01:37] That is a fantastic question. Um, so the there have been quite a few approaches to the auditory processing field to date. Um, all of them share. One kind of common quality is when you do the test battery that you perform, whether that be sort of some automated testing or some CD based testing or some audio testing through audiometric equipment. Um, the one sort of theme that is consistent through all of the approaches is once you discover where the concerns are in your student or client, those are really the areas that you need to target for intervention. So which makes perfect sense. If you go get some blood work done at the doctor, if there are some issues, they don't just give you random random interventions for. If you don't have low blood pressure, you better not be taking low blood pressure medicine. Right, right. So it's kind of the same for for all of the approaches is before you treat an auditory deficit, you need to discover what those deficits are. Mhm. Um and then focus in on those deficits with, with you can do home based therapy. You can do therapy through computer programs. You can do therapy through a clinical audio audiometer in a sound booth. You can do therapy in a language evaluation. So the first step is discovering okay what are the deficits. And some people say how do you treat auditory processing. And my my response is well which area. Where is it down. There's no like here's a program that fixes auditory processing because there are so many areas that that can be deficient or underdeveloped. You only really need to target what's down.
Carrie: [00:03:51] Um, which is my next question. Like what would those areas typically be for auditory processing that you would be intervening.
Matt: [00:04:00] Okay. Yep. So I would probably say there's three more prominent areas that that we test for, um, that seem to be surfacing again and again and again in the studies of if these areas are deficient, then you're going to see difficulties with language, with reading, and with classroom learning. Um, I there has not been enough data to say of the three, which is the most prominent, but the the most in my experience. And again, I'll have data on this later. But in my experience, the most prominent one is what we call a dichotic listening deficit. Now, there's a lot of confusion about this particular topic, because what we do in the testing Room is we create an environment under headphones that requires the listener to use the part of their brain that communicates between the left and right hemisphere. We call it the corpus callosum. Um, and to to. So we have pathways in our brain that go from the right ear up to the right side of the brain, and we have pathways that go from the left ear up to the left side of the brain. But those are not the major pathways. The biggest pathways go from your left ear to the right side of the brain, and your right ear to the left side of the brain. So what we've discovered is if you, um, place a, uh, some headphones on an individual and you, you give them auditory information in the right ear at the same time, you give them auditory information in the left ear.
Matt: [00:05:58] And when you do that, it suppresses those ipsilateral pathways. So you don't go from the left ear up to the left side of the brain or the right ear to the right side of the brain. You go contralateral. So it suppresses the the straight up pathways. And it uses the pathways that go across the brain. Now when we do that, when we present information like that, it requires the individual to get, um, uh, sorry to get that information from both sides over to the other side as well. So you have to use that corpus callosum. Now when the individual gets the information on both ears, if they have very quick neural speed, like the information is able to be transmitted at a normal neural rate, they can transmit that information back and forth so quickly they can understand both sides. They can use the information from both years when they can't use that information quickly, then, um, the the individual loses one side or the other, and there's sort of often there's a righty or advantage if the, if the information is language that you're, if you're giving words in each year, then there's often a right or advantage. But people that see a left ear advantage often think, oh my gosh, the it's the ear that's down. And that's not the case at all.
Matt: [00:07:31] Actually, what we're testing is the pathway in between the brain. So regardless of which ear is down, the transmission speed of the corpus callosum is really what you're testing. So there's there seem to be a bit of an emphasis on focusing on which ear it is. That's down and in in answer, it doesn't matter if it's the left ear on the testing that shows that it's down or the right ear, or both. It means that their transfer of information from both sides of their brain across to the other side, is happening too slow for them to retain the information as a unit and then they can't cope with it. So, um, very rarely in life would you have information coming into your left ear and very different information coming in your right ear. So it's literally just so we can measure that, that interhemispheric transfer speed. Um, but those kiddos that we talked about in our last meet up, that was so much fun. Um, the the the kiddos that have these slow, um, corpus callosum speeds in that neural transmission have dichotic listening deficits and testing, and they're the ones that are struggling or some of the ones that are struggling with language and struggling with reading. And we found 10% of them in in every single class, 10% had a dichotic listening deficit. So I wouldn't say it's the most important, but it seems to be one of the most commonly discovered or commonly seen deficits for whatever reason, whether it be environmental, whether it be, you know, genetic or what, but maybe a combination of both.
Matt: [00:09:24] But there's definitely a prominence in, in dichotic listening. If I had to guess, I would think the probably one of the next most prominent is kind of that localization, spatial hearing, where using your ability to focus on where somebody that you're talking to is coming from versus like, if you're in a restaurant or if you're in a classroom and you're trying to hear the teacher, even though you've got Sally Mae or whoever else. So off to the side talking to their neighbor. Using your ability to focus on where the the speech is coming from. They call that spatial hearing. Um, some don't have the capacity to use that information to really be able to focus well on what they're trying to hear. And there is some great work out of out of Australia. Um, uh, the NAL lab down there, Dr Harvey Dillon and kind of his brainchild, uh, has developed really effective ways to improve using your localization or your spatial hearing so that you can actually focus really well on what you're trying to target, and not so much, um, what you're what you're trying to dismiss. And I think that's probably like, we didn't even have that test. I was going in grad school just to sort of give your listeners how how far we're coming with that, but they have an intervention for that.
Matt: [00:11:05] Um, it's computer based. You can actually do this as a speech therapist in clinic with varying sound sources as well. Like it's it's kind of easy to do if you're already doing clinic, you can do it manually where you have, um, uh, some, some target sounds, whether that be the speech therapist reading a book with the individual. And you can be playing a radio off to the side and to make it more challenging, you sort of just slowly bring that radio up without you bringing stuff up and just training that in a routine fashion. They learn how to focus on where they want to focus, and by doing that, we can suppress information from other locations. So this was I had you know, in life you have those aha moments. Right. So when we I was in psychoacoustics class, I was still of the sort of elementary understanding where, you know, you have your motor systems and you have your sensory systems. And I was, you know, you're taught your ear is a sensory system. And by and large that's true. But when we go to grad school, we're actually taught actually we, we go, sorry. Um, kids, actually, um, we use that information to suppress our ear. So our ear has all these amplifiers in it that take sound that we want to hear, and it boosts it up.
Matt: [00:12:51] It actually amplifies that information. But in the scenario we were talking about where you're in a classroom where you're trying to focus on on the teacher and ignore all the extraneous noise around you. We actually have the ability to un amplify or suppress those listeners that were not focused on, but individuals that don't have that skill are really going to struggle. So Dr Harvey Dillon and his team have shown that actually, if you if you have a dedicated, um, regimen where you just slowly work on that skill, they get much better. And then when the time comes, they can focus on what they're trying to listen to and, and avoid avoid the other. Um, I didn't mention, but I will say now that the dichotic listening deficits are treatable too, and they're treatable in a variety of ways as well. For just for your listeners. So that's that. Those, I think, are probably some of the most prominent areas that we've sort of are finding that are really hindering development. If I had to pick a third one and again there's so many, but the third one would be what I call just auditory patterning. So a good example of this. In fact it's it's almost better example than I need. But um if there are individuals that have been trained Morse code.
Matt: [00:14:29] Mhm.
Matt: [00:14:30] They can take that code and turn it into language. So when I say auditory patterning, language is literally just a pattern of sounds. So if I say car r r right. In that order you hear car. If I take that order and I flip it around and I say R a Rack. Rack. The sounds are identical. I've just changed the order of them, and that changes the meaning. So in auditory processing, what we try to do is say, well, yeah, but that's language. That's using speech sounds. What if we test that ability to follow patterns without speech sounds. So in the case of Morse code you actually only have two stimuli. That's it. You have a short beep and a long beep. And the order in which you put those like Soas is is long, short, long I think like, no, it's dee dee dee dee dee dee dee dee dee dee dee like it's short short short long long long short short short. So that's soas um, I learned that from the dishwasher. Uh, commercial. Um, um, so, so to somebody that knows Morse code, if they hear that, they're like, oh, Soas That's SOS. They're giving me a signal. Whereas in in an auditory processing assessment, we might just tell them. Okay, tell me what you hear. I'm going to play you some sounds and you could say something like doo doo doo doo.
Matt: [00:16:06] So the individual would need to say long, long, short. Or often we use pitches instead of duration. So we can say or high high low right. So they can hum it. Mhm. Mhm. If they struggle to follow sounds that aren't language. So they're not speech sounds, they're just nonlinguistic sounds. Why are we surprised then that they're struggling with language which is just phonemes put in a specific order. So what we found is ah, they're they, they're phonemic classification is fine. Like they can tell the difference between mhm and buh But but the order in which those sounds are coming, they're struggling to put in place. So what we found is if we train the ability to follow nonlinguistic sounds, they can then follow linguistic sounds in patterns more successfully as well. And we see a big improvement in language development and reading development. And let me be I want to be very clear with the studies that I've seen in no study has an auditory processing deficit been administered where you see benefits in reading and there not be reading intervention as well. So an auditory deficit needs treatment, but that doesn't mean it replaces the language therapy or the reading intervention. Both of those are still needed, but the auditory intervention will make your success with those therapies faster and and you get higher scores.
Matt: [00:17:55] Um, so it I want to be very clear. Auditory processing deficits do not replace reading intervention or language intervention. That's it's they're literally on one continuum in that pathway. And we need to be looking at all of it from from the ear all the way up to Wernicke's area. Um, so we need both audiology and speech language therapy. Um, as a group. And I know that we've talked about sort of multi-professional teams. That's true. Uh, but in reality, that's hard to make work. There's not a whole lot of audiologists that do auditory processing work. Um, there's often cases where, um, you don't have, uh, educational psychology available. So if I was a, for example, a speech pathologist and I'm like, well, I hear what you're saying, I understand that I really should be incorporating some more auditory processing testing. I'm not an audiologist. How can I diagnose it? Well, as it my advice to you would be if you can partner with an audiologist. Fantastic. If you can't find those handful that exist that are happy to do that, um, you can test for deficits that is within your scope of practice. Absolutely. Even though you can't label a diagnosis, that doesn't mean you can't, um, discover deficits and intervene for those deficits. That's absolutely within your scope of practice.
Matt: [00:19:36] So I know the the first time I had parents ask me, I did all this testing in grad school and, um, I was explaining all the results, and I was really proud of myself because I sort of explained what we did and how they did. And, you know we found these areas of concern? And I was looking at the parents and they said, okay, what are we going to do about it? Like what's what's the point of of all this testing if we can't intervene? And I looked over there, their son and I thought, that's a genius question. Why have I not asked this in class like, well, okay, great. What's all this testing? What are we going to do about it. Mhm. Um, and that was really the, the impetus for pushing forward with why don't we make ways to treat these interventions. And I know I've been told like you've got it, you've got it for good. Well why don't we test those waters. Let's see if we can actually improve these skills. And if we can fantastic. Then we can actually focus more energy and time on if we intervene on skill. A, do we see a significant benefit in their life, whether it be educationally or socially or whatever? Or if not, well, what about skill B is that does that seem to be more impacted in their life? And I feel like that's where we are now.
Matt: [00:21:04] It's not that deficits occur and can you improve those deficits. Now we're trying to hone in on what's important. What do we really need to highlight for intervention or for discovering those deficits. What do we need to focus on. Like do we need a two hour battery to discover what we need to do, or can we do this in a more efficient manner? So yeah, I think our profession is really at an exciting part where we're we're finding we can improve stuff. So well, what happens if we improve localization? What happens if we improve these auditory patterning abilities? What happens when we improve that dichotic listening that interhemispheric transfer speed. What happens when we we improve that spatial awareness. And there are there are other areas like phonemic classification. Like if somebody can't distinguish in their brain the difference between A and A, that is going to really be difficult for them to parse when they're hearing language spoken at normal rates. So you have to sort of delve into where are these developmental milestones, strong or not milestones areas and where are they underdeveloped. And you sort of create a recipe for that individual as you, as you would for any other health issue.
Matt: [00:22:37] Right?
Carrie: [00:22:38] Yeah. And I mean, for those of us that do have educational audiologists working within the schools, um, I know personally like the power of having that collaborative team to kind of look at the whole child and then individualize what that student needs based on the results that we can get from an audiological perspective. But then also, like you said, the the psychologist and the intervention specialist and the speech language pathologist, all of them bring that important piece. And if you can, um, meet the need through what are those deficit areas for auditory processing through some of the intervention programs that you're talking about? Like how does how does that look for the outcome for that child in the classroom and with reading and more of those life functioning skills? Because that's what we want. We want them to be successful and how can we help them? Does that sound about right?
Matt: [00:23:35] Yeah, absolutely. Yeah. And and there's you have to blossom where you're planted is how my mom would say it. So if you're at a location where you have, like, an amazing Dr Carrie Spangler, or others. Um, that that can help on a team to do, to really hone in on where their expertise lies. And you have educational psychology and speech language, uh, specialists or um, or any other OTs like other. If you have a access to multiple professionals, it just gives you a better ability to know exactly how or prioritize in certain scenarios. Really, what you're wanting to focus on with, with that student in that in where they are. But you're you're absolutely right when you can intervene accurately. So you're sort of not just doing, let's just do general therapy here. Well, no, we know where the deficits are. We know where we need to target in your trajectory of success just increases for those students. And when you see that and see how well they've struggled for two years with developing reading, for example, I've heard this time again and again and again and we finally intervene with the auditory portion. And there's their gains in reading. Just go from a slow hill to a mountain in trajectory, and the parents are like, why haven't, you know, this is fantastic. We're actually seeing progress. The students get excited because they've been hitting their head against the wall. They're trying. It's not like there's a lack of of effort. They just think they're they're they're not a smart enough to do it, which is not the case.
Matt: [00:25:33] We just need to re redesign how they're processing that information and then voila, they can really shine and develop. And it's that's the goal. The goal is like let's target where we see these deficiencies and and also target the higher level stuff. You know like there's top down things there's attention if there's attentional difficulties those need addressed. There's working memory that, you know, if there's a working memory component is your auditory processing testing be affected from that. So all of these things have to be kept in mind whether you're lucky enough to be, um, working alongside psychology and audiology and speech therapy and others or you're, uh. Look, I'm, I'm the only professional at my district. We're a small school. Well, then you just have to do your best to try to fill in the gaps as good as you can. You like just saying. Well, I just won't do any auditory processing work or I won't do any. I won't check for any, um, cognitive abilities or any working memory skills. It's if it's in your scope. Don't be afraid to go out there. Even if you can't diagnose ADHD. You can still do some some measures to determine actually, there's some some concerns with attention here. And use that information to really, um, modify your approach for, for the students. There's there's no one approach to fix everybody. You need to have a deficit specific approach. So the more information that you can garner, the more accurate your deficit specific treatment will be for that individual. So yeah, fun times.
Carrie: [00:27:26] Exciting times. Well, I think what excites me so much is the fact that, um, we can get deeper into what their deficit areas are. We know that having that strong foundation for auditory skills is so important from a bottom up perspective. But then the impact that it has on reading and language and classroom performance. And if you develop some therapy, you know, specific programs to acoustic pioneer. And I know other companies have to to really like kind of just target those areas so that we can see the success. So we, we no longer can say like we can't do anything about it. We can't. And so that's the exciting part. I know we've talked a lot today, um, about auditory processing and therapy and things like that, but I want to give you just a chance to say, like, did I miss anything? Is there anything that, like, you wished I would have maybe asked that you wanted to maybe summarize? And then I also want you to share a little bit, um, how people can get Ahold of you and, um, where to find you, too?
Matt: [00:28:45] Sure. Sure. Let me start with that before I forget. So if. If you would like to get a hold of me, you can call me directly. My number is (806) 424-3436. You can call or text me if I'm not available. Just leave a message. Uh, you can email me at info info at Acoustic pioneer.com. And then there's all of course, the social media, the Facebook, the Instagram, all that sort of stuff we can check as well. Um, but yeah, email me, call me. I promise I don't bite. I try. I'm a friendly guy.
Matt: [00:29:24] So yeah, very responsive.
Carrie: [00:29:27] And what I can do is I can link all that information in the show notes, too, so people can go to the show notes and find that information as well.
Matt: [00:29:36] Perfect, perfect. No. Like, Carrie, this has been so fun. Like this is literally one of my favorite topics. So inviting me to come talk about one of my favorite topics since I was a little boy. It was almost like Christmas morning.
Matt: [00:29:48] Today I'm like, yay me!
Matt: [00:29:51] And how much it helps others if it. If intervention is needed.
Carrie: [00:31:19] Well, I just appreciate your time today because I know this is such an exciting topic and your excitement shines through. So I know you have so much passion, um, and you have done so much to advance this part of the field and to the way you explain things. It makes it very applicable to real life for students and those that we are seeing in the school and what that impact is. So I think a lot of people will be excited to hear this interview today and get started wherever they can, and kind of just make an impact with students within the school, because as you said earlier, probably about 10% of those students sitting in the classroom have some sort of auditory processing deficit, which is impacting how they read, learn, process, language and some other things that impact the classroom learning or listening. So again, Matt, thank you so much for being a part of today's interview on the empowEAR audiology podcast.
Matt: [00:32:25] Fantastic. Thank you.
Announcer: [00:32:27] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 69: empowEAR Audiology - Dr. Matthew Barker
Announcer: [00:00:00] Welcome to episode 69 of empowEAR Audiology with Dr Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I'm Dr. Carrie Spangler, your host and a dedicated audiologist who is part of the deaf and hard of hearing community. My mission is to bring you empowering insights on audiology and beyond. Today we begin part one of a series, a special two part series on auditory processing with Dr Matthew Barker, who is a passionate researcher and fellow audiologist. In this episode, we'll explore what auditory processing is, common red flags and how auditory processing deficit can affect individuals. In part two, we'll dive into what can be done once a deficit is identified. Thanks for tuning in. Let's get started. Hello listeners, I am so excited today to welcome Matthew Barker today, and I'm going to share a little bit before I bring him live on to the podcast. Dr Matthew Barker is the founder and director and he is an audiologist that specializes in testing auditory processing. He completed his doctorate from Texas Tech University Health Sciences in 2004, and Dr Barker saw how much of a negative impact underdeveloped auditory processing skills caused people when learning language and learning to read, and he found some strong evidence that indicates over 10% of elementary and primary school children struggle in learning because of an auditory processing deficit.
Carrie: [00:02:06] He also discovered that over 98% of audiologists were not doing any auditory processing testing, and he found out that most audiologists are put off by how long the testing took to administer, how long reports took to write, and so on. So that, coupled with the fact that there were no deficit specific therapies available, he raised the question, what good is testing for a problem if there's nothing that can be done for it? Moving forward, I just want to say that, you know, Dr. Barker, who said he was driving down the road minding his own business one day when God put into his head, um, that the idea to develop a way to test auditory processing skills and a fast and fun way and create some deficit specific auditory therapies to help. And so the. His company, Acoustic Pioneer was launched back in 2013. And today I have Dr Barker with me who is going to share a lot about auditory processing today as well as what we can do about it. So Dr Barker, welcome to the EmpowEARAudiology podcast.
Matt: [00:03:25] It is absolutely a pleasure to be here with you, Dr. Carrie Spangler. Thank you for having me.
Carrie: [00:03:31] Thank you for being here. And one of the things on my podcast when I interview professionals is my first question is, I am just curious of how you actually got into the field of audiology, because everybody seems to have a different road to get there.
Matt: [00:03:49] Yep. Um, mine was sort of. That's a great question. Uh, mine was sort of Faceted. Um, uh, growing up, one of my childhood best friends had a severe high frequency hearing loss. And, uh, when the first time I was around him without his hearing aids was an eye opener, like, I was like, you cannot function at all without those things. It was just. It was it was stunning to see how much they changed him in versus out. Um, and down the road, you sort of, you hum about different professions, right? You're like, oh, you know, law school would be okay or, or I want to open my own. I was going to sell mattresses at one point. Kerry. Um, there was there was an array of options. Uh, and my mom's, uh, school counselor, um, and she said, you know, there's a lot of testing that's available that you can sort of go see what your interests are, see what what you like to do, and it'll compare those results to other people doing other jobs. And on that list was speech therapist or speech language pathologist. And I at the time was down at, um, Texas State used to be called Southwest Texas. And the audiologist that was at the speech therapy, um, office that I was sort of asking about speech therapy stuff.
Matt: [00:05:22] She was like one of the coolest people I ever met. So I'm like, I think audiology is a really good road. Um, it seems to attract cool people. And, you know, I don't want to be in a profession where there's a bunch of uncool people around. Let's go to the audiology one. It'll be so. So just exposure to an audiologist, seeing what benefits it it did for for my good friend, it just seemed like a good fit. And my first year in grad school. After after you pick. You're always wondering, second guessing yourself, thinking, was this right? Was this the profession? I hope it was the right one after I took the psychoacoustics class. Most people hate that class. I loved it like I was that weirdo. Like, oh my gosh, the brain can do what the brain just does that automatically and we don't really think about it. So once I discovered how complicated the ear was, which, you know, I thought it just was like a microphone of sorts. Way more complicated than that, of course. Um, and how it functioned. I knew after that class that I was in the right profession, and I've never looked back. It's been it's been a wonderful road. It really has.
Carrie: [00:06:40] I love how.
Carrie: [00:06:41] People. And it just took one conversation with someone to really change how, you know, the trajectory of your career, right?
Matt: [00:06:49] Yeah. I could have been a speech therapist like it was. I almost flipped a coin.
Carrie: [00:06:55] Yeah, well, either way, you would have been cool. We love our speech pathologists, especially the ones who are listening today.
Matt: [00:07:03] So, 100%. 100%. And what's funny is I feel like the the reason I had difficulty choosing between audiology and speech therapy is because I like the therapeutic aspect of it as well. I like the science aspect and the therapeutic. So auditory processing is probably that that field or the portion of the the internal communication system, auditory communication system where the audiologist and the speech pathologist really share the most ground because it's, it's sort of that, that um, uh, relay race where this is where we hand the baton over, like we're both sort of in the auditory processing area together. So it's it's a good fit for me. Works well.
Carrie: [00:07:52] Good. And kind of going along with that. I know, at least in my experience of going through my audiology program, there wasn't a huge focus on like learning about auditory processing and that. So how did you kind of find out about that and learn about auditory processing? Mhm.
Matt: [00:08:14] Um, yep. So I've had a lot of conversations with audiologists globally about this. And at Texas Tech I happened to to have a professor that was very into the auditory processing area. So we had an entire class like a three hour class all semester long on it. We did a lot of practicum or like, you know, clinic with auditory processing testing. Um, I will say that my classmates, I thought my four classmates were oddballs because they would avoid the auditory processing area and they would trade me out. They'd say, look, I'll do two of your hearing aid patients if you'll do this, my APD assessment on Friday. So it was a funny bartering. Like they wanted to give all of them to me, and I wanted to take as many as I could get. So I thought they were the weirdos until I got out into the the field and realized that, oh, it's me and my professor that really are the more oddballs than the other way around. Um, so I kind of like, lucked upon a professor that was very into the to the field. I've had conversations with audiologists with their masters or Dr.ate that said that they had one class on on APD, but it was literally one afternoon class, like it was not an entire semester. It was. Well, yeah, we touched on it very briefly one day and I think like oral rehab or something like that. So. Right. So the, knowledge base across the profession in both speech therapists and audiology is very varied depending on on where you got your training and what what you were exposed to and things like that. But, um, the from my own data points, the exciting part is that more and more and more are getting involved.
Matt: [00:10:12] And I think it's like a just a just like anything in a profession if, if things are changing, especially organically, not like from a top down structural standpoint, it just takes a while for that information to sort of reach others. But the, the again, based on the conversations that I've had, a lot of the professionals that that have started to use some auditory processing testing and some interventions when they actually see the benefit in front of them. That's the, like the green light moment. Like, oh, this is actually helpful for my the students that I service or for my patients. And thankfully not just with Acoustic Pioneer, but there's there's we're 11 years past when Acoustic pioneer launched now. And there's there's other options available, not just acoustic pioneer therapies, but there's other therapies that have been proven effective. And like what an exciting time where we can be in a field where we can actually make some significant progress in these areas. Whereas when I was going to school, I was focused on how do you test it? How do you analyze it? How does how do you administer things? How do you really get the patient or the client really focused and engaged? So you're getting the best data possible? Um, to then like you read on the website. Wait a minute. If there's nothing you're going to do about what you find in the testing, what is the point of that? So. Yeah. So it's really exciting to be in a profession where we're kind of breaking down barriers and figuring out ways to help. What? What we couldn't ten years ago or more?
Carrie: [00:12:05] Yeah.
Carrie: [00:12:06] No, I agree, I feel like the ripple effect is definitely happening within our field. And, you know, I related fields to the information that's out there. But just for our listeners to kind of give a more like 360 degree like view. Um, can you just share just what is auditory processing like? Just a definition so that we can dive a little bit deeper on the same page with some other questions?
Matt: [00:12:34] Okay, okay. This is an excellent question. And there is there are very long like page long definitions like ASHA has papers that are literally pages long. To define this, and I don't think it's that difficult. I think it's easier to. Define if you the definition I use and I can defend this all the auditory information that enters your ear heads up toward your cortex, all of it. Eventually it gets up to the cortex, all of the processing that leaves your cochlea, your inner ear, the processing that's done from that point where the eighth nerve begins to fire all the way up to the auditory cortex, is is auditory processing. As soon as you get to one further step into the into Wernicke's area where language is processed, the auditory processing is finished and and the sound is now language. So if the auditory information has meaning to it, That's language. So I use as a as an example because some people say I don't understand the difference between language processing and auditory processing. So this is a very easy example to use. Let's say you're driving down. No, you're just walking down a sidewalk next to a road.
Matt: [00:14:02] If you're walking down a sidewalk and a and a semi-truck is coming up from behind you, you know that there's a semi truck coming up from behind you. You don't have to turn and look. You can see you can hear what it is. You know what? It's coming. And you can even tell, like what speed it's going, what direction. As soon as it's going to be near you and pass by, you can do all of that without looking. That's called we call that localization, right? So if somebody is in a park and you're walking down that same sidewalk and they yell out, hey, Carrie. You can localize where they're coming from too. So if you can do the processing to both speech and non-speech, then it's not a language processing skill. It's an auditory processing skill. So locating a sound in space has nothing to do. Whether the signal is somebody speaking or another noise made by a car engine or a jet or something falling over or anything like that. So my definition in summary is the the processing of the auditory information from the ear to the auditory cortex is where the auditory processing happens.
Carrie: [00:15:22] Okay. That's a great definition. And so kind of going along with that though. And I'm just going to put this out here at the beginning because I think this this question always comes up. Um, it doesn't always come up. I think it's getting better, but there has been some conflicting views in the past about does auditory processing really exists? So can we just dispel this once and for all? Um, that that I guess statement that comes up.
Matt: [00:15:56] Absolutely. Yep, yep. So historically there have been some research studies published in the auditory processing field that were fine studies, but there were, there weren't like the the scientific gold standard. There was a lot of anecdotal information or data, and rightfully so. Some other critical professionals said, well, look, these studies really aren't the highest standard. We can't really draw too many conclusions from them. There's a lot of variables that aren't accounted for. And fair enough. But the conclusion that auditory processing doesn't exist was also not their statement. Their statement was we actually, as a profession, need to raise our standard on on how we do research. So, um, there is a class that we spoke about this before we hit record, um, that every audiologist goes through and that most, I would say over 90% would say is the most challenging course that you take in graduate school. And it's a class called psychoacoustics. And if you ask any audiologist, is psychoacoustics real? They will all say, of course it's real. It's how we hear. It's the study of what our brain does with the sound that's going into the ear canal. And, um, auditory processing is a just a synonym of psychoacoustics. That example that I gave just before about. Are you able to locate a sound in space? No. Nobody that has a functioning cortex and has been alive on Earth would say that's not a skill that humans have. Like, everybody can locate sound unless there's, you know, significant hearing loss involved or unilateral deafness or whatever.
Matt: [00:17:54] But like people that have normally developed hearing develop the ability to locate a sound in space. That's auditory processing, that's psychoacoustics. They're they're one and the same. Um, I never threaten this, but if if somebody would say, look, auditory processing doesn't happen, then psychoacoustics doesn't happen. And if you if that were true, then you could remove the eighth nerve from your ear to your cortex and nothing would change. But that would cause some pretty severe issues, I'm pretty certain. So. So, yeah. Um, to me, it's it's it's just not defined well. And that's a problem. Uh, there's been studies, not all. There's been a lot of really good studies as well, but there's been a few studies that were were highlighted a bit too much about how the scientific gold standard wasn't followed. But, uh, in recent years, even we've seen studies with the highest, um, uh, gold standard in research where there's a placebo, uh, double blind, um, control groups, all of all of what has been considered lacking up until now. So the, the scientific rigor is really coming along. So my if I had to do what do they call that, an elevator answer. If somebody says is auditory processing real and does it really matter? I would say, well, if it didn't matter, why does helping the auditory processing improve their lives? Like if you make it better, you see significant benefit. So if it didn't matter, why would that happen?
Carrie: [00:19:45] Yeah, that thank you for kind of helping to dispel that statement that seems to come up every once in a while to kind of going along with that. You mentioned like localization and like how an intact auditory processing system is important for just everyday life. What happens when an individual struggles with auditory processing? What do you see then?
Matt: [00:20:13] Okay, that's a great question. So in hearing, just like in vision, there's a lot of varied skills involved. Localization is probably the easiest one to give as an example there. And that's a very basic skill. Like we locate sound very low in our brainstem, as you know. So that's a very early neural skill. Um, the higher that you go in the brain, the more complicated and more complicated and more complicated the analyzes become, so that we can do what we're doing right now having a conversation. The more you understand on how much is happening in your brain, for you to be able to hear me utter a whole lot of sounds and understand the meaning of them is a phenomenally difficult task. And we just like we just think, oh, this is easy. What do you mean? We just naturally do this? But as a as a scientist and researcher on this, the more you drill down into what's happening, to make that easy is unbelievably complicated. So, um, what a lot of the research mine, as well as many others are, seem to indicate as of late. And Asha has this listed at their website as well. If you have some underdevelopment in areas of your auditory processing system or psychoacoustic system, those those deficits have recourse downstream from where the deficit lies. So what we're what we see are about three major red flags.
Matt: [00:22:05] The first is if there's an auditory processing deficit you were very likely to see just struggled classroom learning. So they're in a classroom. They're trying to to follow along. It's just not easy. And the the um there was a study done where they wanted to get students recruited for potential therapies. And they thought, well, if we if we recruit a lot of those that are struggling in the classroom and test them for this particular deficit because they're struggling, we'll probably have a higher incidence rate versus testing the ones that are absolutely the top of the class. The likelihood that they're have an auditory deficit is probably lower. So so the researchers tested the bottom 20% of the classroom for one auditory processing skill, the Dichotic listening test. And that showed that 50% of those 20%, the bottom 20% in the classroom, half of them had that dichotic listening deficit. Um, so that's where on the website, when you said around 10% or more have an it's based on that data that if you test the bottom 20%, half of them will struggle with with dichotic listening. Um, and then they went on to, to do some research on can we improve that? And I'll let the cat out of the bag. We can we can make that better.
Carrie: [00:23:48] Which is exciting, right.
Carrie: [00:23:51] Fantastic. Really.
Carrie: [00:23:52] But that can and that was one of my questions too. Um, a lot of our listeners, um, work with the pediatric population. And so you kind of indicated some of those red flags that you might see. Um, I don't know if there's any more, but about 10% of kids who are in classrooms could be like having some kind of auditory processing. And what you said about, you know, that, I mean, I, I was visualizing a foundation Basically, when you are talking about the auditory processing piece where, you know, if we don't remedy, like it's almost like building a house and, you know, a foundation, a strong foundation versus building a house on sand. Right? Like, there's a very much of a difference. And if we're not looking at that strong foundation first, then everything else is not going to be built up correctly. Correct?
Matt: [00:24:49] 100%. So I didn't even finish answering the question. So I'm glad you kept going. So the other two, uh, red flags that you will see in in these cases, a very high likelihood of an auditory deficit are children that are also struggling to develop language. Mhm. And lastly you you said the house the foundation part. So you cannot develop auditory language without auditory input. Like it's literally impossible. What won't happen. So you have to have intact auditory input to develop intact language. So language is nothing more than understanding the utterances of somebody speaking through the auditory system. Typically unless we're talking Braille or some different system of input.
Carrie: [00:25:42] Mhm.
Matt: [00:25:43] Beyond that what's built on language is reading. So if you don't have an intact language set you are going to struggle with reading. So if you see a struggling reader or somebody struggling with language or somebody struggling in the classroom, you're going to have a very high incidence of finding a significant auditory deficit in those individuals. Um, because I when I try to explain how when people say reading is auditory, it confuses people a lot because they think I thought reading was visual, like you use your eyes and that's true. You use your eyes to look at the the letters, but then you use your auditory system to assign sounds to the letters and then group the sounds into words. And then you use your language system to extract the meaning from those words. So when I say reading is auditory, if you look at the brain scans, there's a there's a higher activity in the auditory cortex than there is in the visual cortex. But it's a I would yes, it is a visual skill, but it's also an auditory skill. One of my favorite examples is if you read a quote or a text or a letter from somebody that you're really familiar with, you will often even read it in their voice, like you'll hear them reading to you through your phone. It's really I mean, it's it that's obviously an auditory, Um, event. Not a visual one, but it involves the eyes as well. So. So yeah, those those three are the the big downstream ripple effects. If your auditory system is not intact, how can you build higher level systems that are reliant on that base to give the information or to process the information upstream efficiently and effectively is really the point? Yeah.
Carrie: [00:27:45] Yeah. Great.
Carrie: [00:27:46] So kind of taking those red flags you talked about like students that may be having difficulty in the classroom, students that may have difficulty with any kind of language, you know, skills or processing or reading skills. Those are kind of would those then be maybe the red flags that an educator or a parent might see in their own child or a student? Um, to maybe make a referral or look more into that?
Matt: [00:28:16] Yes, absolutely. So I've done multiple studies now on this, and your listeners are probably going to be shocked. I was shocked as well. I was kind of under the impression that the in the profession, instead of what recent data show, that north of 10% of an elementary or primary school population has a deficit. We were thinking closer to 1%. So when we started seeing the numbers a lot more substantial, uh, it was very surprising. I was not expecting that. Um, the, uh, studies that we've done, we've done three of them currently, and we did a, did a vast testing of individuals that that were already diagnosed with a language delay or disorder and had reading difficulties. And of the studies. Two of them came back with 82% of these individuals that were struggling with language and reading had a significant auditory. So two of them had 82% and the third one had 83%. So this has been replicated three times. And if if you speech pathologist out there, if you've never done auditory processing work and you want to hold my feet to the fire on this and say, are you sure if I test my kids, I'm going to find like about eight out of ten of them have an auditory deficit. I will I will work with you to test your your clientele. It's and then I'll have another study up my sleeve to show the same thing. So yeah, I will I will if you're interested. Contact me and I will. I will work with you to to show you what I've seen again and again and again.
Carrie: [00:30:18] Yeah.
Carrie: [00:30:19] And that 10% is. Yeah. When I was in grad school, I mean, we were learning, like maybe 1%, maybe 2% of the population. And when you kind of put it that way, um, it's much more prevalent. And then we think about all of those students who are sitting in classrooms with these, you know, reading and language and classroom learning difficulties. And we haven't maybe touched that foundation yet. And, and discovered what, you know, the key point in that is but thinking about that, like, uh, I know and when I was in school, we learned like who? Like who should be tested for auditory processing. And I know that has changed a lot over the last, especially ten years. Can you maybe give a background of, you know who besides these red flag kids like what? What would a profile of someone that needs to be tested for auditory processing?
Carrie: [00:31:22] Okay.
Matt: [00:31:22] Yep, yep. So, um, I want to I want to start by saying what I've seen in the field since I graduated, which I will say is literally 20 years from now or ago. Um, so the profession has changed quite a bit. When I was going through grad school, the general consensus was there are children that are struggling with reading. Those might be children with dyslexia, or there might be children struggling with language. So those are your receptive language, kids. Um, and then there's a group that struggle with auditory processing. So those are your auditory processing kids. However, the studies have shown again and again and again that actually. So one of my favorite eye opening studies was out of England and they wanted to see what is the profile. So that's your question is what is what is the profile of somebody with an auditory deficit. What do they behave like. What are the what are the issues. And they so they did a group of children that had an APD diagnosis. And they questioned them with questionnaires. They questioned them just with um interview. They talked to the parents and the teachers just to get kind of a functional profile, okay. These kids with APD. And remember back when the study was done, there weren't really interventions. There were just labels. So you have an auditory processing deficit. How do you perform? And then they had another group of kids, um, that had a language disorder diagnosis or a language delay diagnosis. So two two separate groups. One had an auditory processing deficit.
Matt: [00:33:14] The other one had a language deficit. And then they they did these profiles of of strengths and weaknesses. And both groups presented identically in how they were showing difficulty. So back then we thought, oh language is one thing and your auditory processing is something completely different. And now we're refocusing and thinking actually the auditory processing deficit is causing these downstream delays because you need those earlier processes to occur correctly and efficiently for those higher level skills to actually be processed well. And what these researchers concluded was these two skills are related, not these are separate groups. So they found the reason they got an APD diagnosis versus a language delay diagnosis was who the parent was recommended to go see. If the parent said, my kiddo is really struggling and somebody said you should go see an audiologist, they got an APD diagnosis. If the parent was recommended, you should go see a speech language therapist. They got a language delay diagnosis. So the biggest variable in that study was the referral route. If you were referred to both, you would have probably got a diagnosis of both. Because language is auditory. Auditory occurs before the language. So they're literally hand in hand. So yeah. Um, so that was pretty exciting. So if there's struggles in the classroom, if there's struggles in noisier environments, if there's delays in language, if there's delays in reading, there's a very high chance that some of those lower auditory skills aren't developed, but I the exciting part is we can help develop those with targeted intervention.
Carrie: [00:35:17] Mhm.
Matt: [00:35:18] Acoustic pioneer and others, they just show fantastic results. It's really cool. We can fix it. Yay!
Carrie: [00:35:26] Yay!
Carrie: [00:35:26] And I can't wait to get into that part too. But before we get there, one other question I have about the testing part or like who to test would be can you just share? I mean, should we be testing like we we can't test a one year old? Well, I mean, maybe through electrophysiologic ways. Yeah. But, um, yeah, maybe just share a little bit about, like, ages and then, um, the other question I have would be like other like students who may have an additional diagnosis.
Carrie: [00:36:00] Mhm. Mhm.
Matt: [00:36:01] So that is fantastic. So the um. Previously. Historically. Uh non-physiological testing. So behavioral testing really started around age seven historically. Um, and that was based on the norms and how low the norms went. So you can't test anybody if you can't compare to normative data because you have no idea what these scores mean.
Carrie: [00:36:29] Mhm.
Matt: [00:36:30] Today, um, generally we're norm down to about age five for, for what I would call specific auditory processing deficits or psychoacoustic deficits, simply because the individual has to understand enough about the task that you can actually get a, get a reliable measurement. And some of those definitions or instructions just get too complicated for kiddos that are below five. So we know as a profession. The sooner that you find a concern, the the faster or the sooner that you intervene for that, the better result you see later down the road. Like if somebody has a, um, uh, an auditory deficit that you don't treat until ten, that's going to have longer term effects than if you treated them at six. However, below five, because it's really too tricky to get those auditory processing or psychoacoustic measures on those individuals, then you really sort of lean on the higher level checks like your language checks and just normal hearing check, because we still think a lot of these under developments can be due to like an undiagnosed Most otitis media or an occluded ear canal that nobody knew was occluded for a year or months. So, so normal hearing checks as well. But if there are language concerns at a three year old doing top down intervention or even some bottom up language intervention are still very helpful for for helping develop the early years skills. So, um, two things have been shown to be phenomenally useful for your clients exposure to very good language and exposure to music. Not loud crazy music, but just general music is a fantastic stimulation of the brain. It uses skills like localization, you know, like when you get that stereo going on, where the drum solo is coming out, the left speaker in the guitar or whatever you like to listen to piano, it's coming out of the other speaker.
Matt: [00:39:06] It's developing all of those skills. So, um, as a as a parent, we, uh, allow our children to use audio books pretty much as much as they want, because the more that you bombard that, that language system with good, solid language input, it is, it is. There's never too much good language to give to those. So, um, if I had concerns as a speech therapist or as a parent doing a language eval as young as you can and doing any bottom up language intervention that you can, um, that is appropriate, as well as exposing them to as much good language and music as possible, is the best thing you can do at that young age. So when they are older, five, six and up and we can test those more nuanced auditory processing areas. Um, hopefully they're going to be good to go by that point, because they've had enough of that stimulation that their brain can develop those skills early enough. But if not, hey, that's okay. We can we can focus more specifically the the higher or the older they get, the more developed they get. So um, so yeah, this is a we kind of again, we talk about that that baton handover between a speech speech language pathologist and an audiologist. And it's whoever put us together in graduate schools knew already that our professions should be side by side. Hearing and language go hand in hand.
Carrie: [00:40:46] Absolutely. So for so for a more specific like diagnoses or like testing about age five, there are other students That maybe should not be tested or should be included, that might have some additional needs or diagnosis.
Matt: [00:41:09] So I try to take as practical of approach as possible when I'm trying to determine who should be tested and who shouldn't. Um, if somebody is performing well, like they're they're doing well socially. They're doing well educationally. If you tested them and found a deficit, it doesn't seem to be impacting them. And we know from the studies that the incidence rates are far lower for those kiddos that are being very successful. But if they're already successful, do they really need an intervention? Even if you even if you did testing and found oh yeah, you do have a bit of a deficit here, we should fix that up. Well, fine. Like I'm not opposed to them getting intervention, but if they're already doing really well with language and reading and social environments in the classroom learning, then they're winning, you know. Good for you, buddy. I'm proud. That's great. Uh, but I think focusing on the ones that are struggling with language and reading, um, or classroom learning, those are the ones that really are swimming. You know, they're trying to keep their head above water. They're just doggy paddling through that information as much as they can. So if we give them some better skills to where they can really hone the language and the reading, uh, more rapidly and successfully, that's really the goal is to help those that are struggling the most.
Matt: [00:42:44] Now, there are some that, you know, you have cases that are multifaceted and there's there are neurological development issues and, um, uh, all sorts of other variables that that make, um, the auditory processing skill maybe not their top priority. You know, maybe mobility is is a limitation and they, they need physical therapy. Or there are times when even me would say, yeah, the auditory processing in this case is not your top priority. So, um, one of one of the approaches to to acoustic pioneer in particular, it was very early on before we released that, we decided, you know, what this these tools, this set of, of programs that we're trying to develop. The one thing that we can't replace with the computer program is a professional brain. We need we need speech therapists, and we need audiologists or educational psychologists to be involved, to make decisions like, okay, what are what are the areas of concern for this client or this student and what's the highest priority for them? Mhm. Um, so all of our programs require a brain like yours. Amazing. Dr. Spangler. So you can use the information available and then make the best case for how to move forward with that, with that student in school or with that client out of school. Um, and it's we will never replace that.
Matt: [00:44:31] That's always we need a professional to help us make those decisions. So, um, along with that. So sometimes the auditory processing is not the most important in a case, but other times it it could be the most important. So if you were a speech therapist working on a kiddo with their language and they're really struggling to develop that. If you haven't targeted the auditory deficit, your your progress in your language development is going to be hindered. Same with reading. If you're trying to develop reading skills in an individual and you don't address the auditory deficit, the the progress track is going to be a lot slower than if you do treat the auditory deficit. So it's um, I've heard multiple professionals start to get into it to see what happens. And they they tell me they go in these meetings and there's usually like a reading trajectory for success or whatever the skill, whatever the education skill is, spelling or math or whatever, they have these trajectories, like the way they're progressing, we expect them to be here by the end of the year. And then you put in some auditory deficit and those, those trajectories of predicted success increase. And they're like what? We we change the auditory system and now they're going to learn how to read faster. Yes that's right.
Carrie: [00:46:02] And that's so exciting right.
Carrie: [00:46:04] Fantastic.
Carrie: [00:46:05] It's really cool.
Matt: [00:46:06] When when you get to see those those cases, it's it's exciting. It's sort of, you know, hair on your arm like oh my gosh. It's really this is fantastic. Yay. We're doing good by our clients. And I think the more data that that we show, more more of the population has this issue than we anticipated.
Carrie: [00:46:30] Mhm.
Matt: [00:46:31] We can actually fix the deficit, which was that that was highly debated 20 years ago. Can we can know that there were many that said if there's a deficit you have a deficit. There's nothing you can do. So that's been shown to be not true. Mhm. Um, and if we fix the deficit You.
Carrie: [00:46:51] See.
Matt: [00:46:51] Life like real life changing skills improve in those individuals. So yeah, it's just fantastic time to to be in our profession. I'm loving it.
Carrie: [00:47:03] Yeah. No I it is it is fantastic. Is there a certain criteria like for diagnosing auditory processing. And do you call it a deficit. Do you call it a disorder. Does it does it really matter what you call it?
Matt: [00:47:23] Um this is a great question. So this is where our profession needs to really go back to the drawing board and come up with an accepted definition of auditory processing disorder. Um, I've tested many, many children. Uh, and I only apply a label of auditory processing Reprocessing disorder. If they're not receiving services in an education system or otherwise, that they would receive if I gave them that label. So with individuals that are already receiving special services because of a language disorder diagnosis, if we do some testing and discover there's also some auditory deficiencies in this in these students, then we I just call it a deficit at that point. Let's treat the deficit. Because when we do treat the deficit some months later, when the when the intervention is finished, when we retest it, the deficits are not there anymore. So I try to avoid applying the label of an auditory processing disorder because it seems kind of permanent. Whereas if we say deficit kind of lends a little bit more like this actually might be something that that is interminable or fixable or treatable, whereas disorder doesn't. So the current definition by both Ashton triple A of of criteria to qualify for an auditory processing disorder is very stringent and and um requires multi skills to be down and very significant results on both skills or more.
Matt: [00:49:14] Um and a lot of the science on who can benefit from intervention is uses criteria that's a lot less stringent. So I, I think we need to go back to the drawing board and not not so much. Ask what is the diagnostic criteria for a label. But ask who can receive significant benefit from intervention and what's that criteria. And use that more as a as a diagnostic criteria versus I'm just going to draw, you know, a very difficult score in multiple areas as the criteria. I so I know ASHA has altered their criteria, their recommended criteria a fair bit. But we need to have one of those good old audiology meet ups and say, look, we've done a lot of research in the last 5 to 10 years, whereas these criteria haven't been updated for longer than that. So we really need to to modernize our our criteria. In my humble opinion, I would I would love to be on that committee to to help make it where it's, it's a, it's an, it's a criteria that is going to highlight those that can really see benefit um, and not really include those that even if they have some concerns, they're really not going to see a whole lot of benefit from intervention. That's really the approach I would take if I could.
Carrie: [00:50:50] Yeah, no, that's good. And you can answer my question too, about that long standing like once diagnosed with a disorder, you know, auditory processing disorder, they have it for life. And that's not the case, which I think is, um, a good stopping point for like right this second, because I want to do part two of this podcast, which would be really we talk a lot about what auditory processing is and um, kind of the diagnosis and, you know, the testing piece of it and what happens. But I would like to do part two with what do we do next. What do you think about that Matt What do you think we can do it part two?
Matt: [00:51:37] That sounds really fun. I would love to join you again. That sounds great.
Carrie: [00:51:41] Okay.
Carrie: [00:51:43] Thank you for listening to part one of our series on auditory processing. I hope you found our discussion on the basics, red flags and the impact of auditory processing deficits. Insightful. Be sure to catch episode 70 where Dr. Barker and I will continue the conversation, focusing on next steps for managing auditory processing challenges. Don't forget to subscribe to the EmpowEAR Audiology podcast so you never miss an episode. If you're enjoying this show, please take a moment to leave a five star review and share it with your colleagues and friends.
Announcer: [00:52:26] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 69 of empowEAR Audiology with Dr Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I'm Dr. Carrie Spangler, your host and a dedicated audiologist who is part of the deaf and hard of hearing community. My mission is to bring you empowering insights on audiology and beyond. Today we begin part one of a series, a special two part series on auditory processing with Dr Matthew Barker, who is a passionate researcher and fellow audiologist. In this episode, we'll explore what auditory processing is, common red flags and how auditory processing deficit can affect individuals. In part two, we'll dive into what can be done once a deficit is identified. Thanks for tuning in. Let's get started. Hello listeners, I am so excited today to welcome Matthew Barker today, and I'm going to share a little bit before I bring him live on to the podcast. Dr Matthew Barker is the founder and director and he is an audiologist that specializes in testing auditory processing. He completed his doctorate from Texas Tech University Health Sciences in 2004, and Dr Barker saw how much of a negative impact underdeveloped auditory processing skills caused people when learning language and learning to read, and he found some strong evidence that indicates over 10% of elementary and primary school children struggle in learning because of an auditory processing deficit.
Carrie: [00:02:06] He also discovered that over 98% of audiologists were not doing any auditory processing testing, and he found out that most audiologists are put off by how long the testing took to administer, how long reports took to write, and so on. So that, coupled with the fact that there were no deficit specific therapies available, he raised the question, what good is testing for a problem if there's nothing that can be done for it? Moving forward, I just want to say that, you know, Dr. Barker, who said he was driving down the road minding his own business one day when God put into his head, um, that the idea to develop a way to test auditory processing skills and a fast and fun way and create some deficit specific auditory therapies to help. And so the. His company, Acoustic Pioneer was launched back in 2013. And today I have Dr Barker with me who is going to share a lot about auditory processing today as well as what we can do about it. So Dr Barker, welcome to the EmpowEARAudiology podcast.
Matt: [00:03:25] It is absolutely a pleasure to be here with you, Dr. Carrie Spangler. Thank you for having me.
Carrie: [00:03:31] Thank you for being here. And one of the things on my podcast when I interview professionals is my first question is, I am just curious of how you actually got into the field of audiology, because everybody seems to have a different road to get there.
Matt: [00:03:49] Yep. Um, mine was sort of. That's a great question. Uh, mine was sort of Faceted. Um, uh, growing up, one of my childhood best friends had a severe high frequency hearing loss. And, uh, when the first time I was around him without his hearing aids was an eye opener, like, I was like, you cannot function at all without those things. It was just. It was it was stunning to see how much they changed him in versus out. Um, and down the road, you sort of, you hum about different professions, right? You're like, oh, you know, law school would be okay or, or I want to open my own. I was going to sell mattresses at one point. Kerry. Um, there was there was an array of options. Uh, and my mom's, uh, school counselor, um, and she said, you know, there's a lot of testing that's available that you can sort of go see what your interests are, see what what you like to do, and it'll compare those results to other people doing other jobs. And on that list was speech therapist or speech language pathologist. And I at the time was down at, um, Texas State used to be called Southwest Texas. And the audiologist that was at the speech therapy, um, office that I was sort of asking about speech therapy stuff.
Matt: [00:05:22] She was like one of the coolest people I ever met. So I'm like, I think audiology is a really good road. Um, it seems to attract cool people. And, you know, I don't want to be in a profession where there's a bunch of uncool people around. Let's go to the audiology one. It'll be so. So just exposure to an audiologist, seeing what benefits it it did for for my good friend, it just seemed like a good fit. And my first year in grad school. After after you pick. You're always wondering, second guessing yourself, thinking, was this right? Was this the profession? I hope it was the right one after I took the psychoacoustics class. Most people hate that class. I loved it like I was that weirdo. Like, oh my gosh, the brain can do what the brain just does that automatically and we don't really think about it. So once I discovered how complicated the ear was, which, you know, I thought it just was like a microphone of sorts. Way more complicated than that, of course. Um, and how it functioned. I knew after that class that I was in the right profession, and I've never looked back. It's been it's been a wonderful road. It really has.
Carrie: [00:06:40] I love how.
Carrie: [00:06:41] People. And it just took one conversation with someone to really change how, you know, the trajectory of your career, right?
Matt: [00:06:49] Yeah. I could have been a speech therapist like it was. I almost flipped a coin.
Carrie: [00:06:55] Yeah, well, either way, you would have been cool. We love our speech pathologists, especially the ones who are listening today.
Matt: [00:07:03] So, 100%. 100%. And what's funny is I feel like the the reason I had difficulty choosing between audiology and speech therapy is because I like the therapeutic aspect of it as well. I like the science aspect and the therapeutic. So auditory processing is probably that that field or the portion of the the internal communication system, auditory communication system where the audiologist and the speech pathologist really share the most ground because it's, it's sort of that, that um, uh, relay race where this is where we hand the baton over, like we're both sort of in the auditory processing area together. So it's it's a good fit for me. Works well.
Carrie: [00:07:52] Good. And kind of going along with that. I know, at least in my experience of going through my audiology program, there wasn't a huge focus on like learning about auditory processing and that. So how did you kind of find out about that and learn about auditory processing? Mhm.
Matt: [00:08:14] Um, yep. So I've had a lot of conversations with audiologists globally about this. And at Texas Tech I happened to to have a professor that was very into the auditory processing area. So we had an entire class like a three hour class all semester long on it. We did a lot of practicum or like, you know, clinic with auditory processing testing. Um, I will say that my classmates, I thought my four classmates were oddballs because they would avoid the auditory processing area and they would trade me out. They'd say, look, I'll do two of your hearing aid patients if you'll do this, my APD assessment on Friday. So it was a funny bartering. Like they wanted to give all of them to me, and I wanted to take as many as I could get. So I thought they were the weirdos until I got out into the the field and realized that, oh, it's me and my professor that really are the more oddballs than the other way around. Um, so I kind of like, lucked upon a professor that was very into the to the field. I've had conversations with audiologists with their masters or Dr.ate that said that they had one class on on APD, but it was literally one afternoon class, like it was not an entire semester. It was. Well, yeah, we touched on it very briefly one day and I think like oral rehab or something like that. So. Right. So the, knowledge base across the profession in both speech therapists and audiology is very varied depending on on where you got your training and what what you were exposed to and things like that. But, um, the from my own data points, the exciting part is that more and more and more are getting involved.
Matt: [00:10:12] And I think it's like a just a just like anything in a profession if, if things are changing, especially organically, not like from a top down structural standpoint, it just takes a while for that information to sort of reach others. But the, the again, based on the conversations that I've had, a lot of the professionals that that have started to use some auditory processing testing and some interventions when they actually see the benefit in front of them. That's the, like the green light moment. Like, oh, this is actually helpful for my the students that I service or for my patients. And thankfully not just with Acoustic Pioneer, but there's there's we're 11 years past when Acoustic pioneer launched now. And there's there's other options available, not just acoustic pioneer therapies, but there's other therapies that have been proven effective. And like what an exciting time where we can be in a field where we can actually make some significant progress in these areas. Whereas when I was going to school, I was focused on how do you test it? How do you analyze it? How does how do you administer things? How do you really get the patient or the client really focused and engaged? So you're getting the best data possible? Um, to then like you read on the website. Wait a minute. If there's nothing you're going to do about what you find in the testing, what is the point of that? So. Yeah. So it's really exciting to be in a profession where we're kind of breaking down barriers and figuring out ways to help. What? What we couldn't ten years ago or more?
Carrie: [00:12:05] Yeah.
Carrie: [00:12:06] No, I agree, I feel like the ripple effect is definitely happening within our field. And, you know, I related fields to the information that's out there. But just for our listeners to kind of give a more like 360 degree like view. Um, can you just share just what is auditory processing like? Just a definition so that we can dive a little bit deeper on the same page with some other questions?
Matt: [00:12:34] Okay, okay. This is an excellent question. And there is there are very long like page long definitions like ASHA has papers that are literally pages long. To define this, and I don't think it's that difficult. I think it's easier to. Define if you the definition I use and I can defend this all the auditory information that enters your ear heads up toward your cortex, all of it. Eventually it gets up to the cortex, all of the processing that leaves your cochlea, your inner ear, the processing that's done from that point where the eighth nerve begins to fire all the way up to the auditory cortex, is is auditory processing. As soon as you get to one further step into the into Wernicke's area where language is processed, the auditory processing is finished and and the sound is now language. So if the auditory information has meaning to it, That's language. So I use as a as an example because some people say I don't understand the difference between language processing and auditory processing. So this is a very easy example to use. Let's say you're driving down. No, you're just walking down a sidewalk next to a road.
Matt: [00:14:02] If you're walking down a sidewalk and a and a semi-truck is coming up from behind you, you know that there's a semi truck coming up from behind you. You don't have to turn and look. You can see you can hear what it is. You know what? It's coming. And you can even tell, like what speed it's going, what direction. As soon as it's going to be near you and pass by, you can do all of that without looking. That's called we call that localization, right? So if somebody is in a park and you're walking down that same sidewalk and they yell out, hey, Carrie. You can localize where they're coming from too. So if you can do the processing to both speech and non-speech, then it's not a language processing skill. It's an auditory processing skill. So locating a sound in space has nothing to do. Whether the signal is somebody speaking or another noise made by a car engine or a jet or something falling over or anything like that. So my definition in summary is the the processing of the auditory information from the ear to the auditory cortex is where the auditory processing happens.
Carrie: [00:15:22] Okay. That's a great definition. And so kind of going along with that though. And I'm just going to put this out here at the beginning because I think this this question always comes up. Um, it doesn't always come up. I think it's getting better, but there has been some conflicting views in the past about does auditory processing really exists? So can we just dispel this once and for all? Um, that that I guess statement that comes up.
Matt: [00:15:56] Absolutely. Yep, yep. So historically there have been some research studies published in the auditory processing field that were fine studies, but there were, there weren't like the the scientific gold standard. There was a lot of anecdotal information or data, and rightfully so. Some other critical professionals said, well, look, these studies really aren't the highest standard. We can't really draw too many conclusions from them. There's a lot of variables that aren't accounted for. And fair enough. But the conclusion that auditory processing doesn't exist was also not their statement. Their statement was we actually, as a profession, need to raise our standard on on how we do research. So, um, there is a class that we spoke about this before we hit record, um, that every audiologist goes through and that most, I would say over 90% would say is the most challenging course that you take in graduate school. And it's a class called psychoacoustics. And if you ask any audiologist, is psychoacoustics real? They will all say, of course it's real. It's how we hear. It's the study of what our brain does with the sound that's going into the ear canal. And, um, auditory processing is a just a synonym of psychoacoustics. That example that I gave just before about. Are you able to locate a sound in space? No. Nobody that has a functioning cortex and has been alive on Earth would say that's not a skill that humans have. Like, everybody can locate sound unless there's, you know, significant hearing loss involved or unilateral deafness or whatever.
Matt: [00:17:54] But like people that have normally developed hearing develop the ability to locate a sound in space. That's auditory processing, that's psychoacoustics. They're they're one and the same. Um, I never threaten this, but if if somebody would say, look, auditory processing doesn't happen, then psychoacoustics doesn't happen. And if you if that were true, then you could remove the eighth nerve from your ear to your cortex and nothing would change. But that would cause some pretty severe issues, I'm pretty certain. So. So, yeah. Um, to me, it's it's it's just not defined well. And that's a problem. Uh, there's been studies, not all. There's been a lot of really good studies as well, but there's been a few studies that were were highlighted a bit too much about how the scientific gold standard wasn't followed. But, uh, in recent years, even we've seen studies with the highest, um, uh, gold standard in research where there's a placebo, uh, double blind, um, control groups, all of all of what has been considered lacking up until now. So the, the scientific rigor is really coming along. So my if I had to do what do they call that, an elevator answer. If somebody says is auditory processing real and does it really matter? I would say, well, if it didn't matter, why does helping the auditory processing improve their lives? Like if you make it better, you see significant benefit. So if it didn't matter, why would that happen?
Carrie: [00:19:45] Yeah, that thank you for kind of helping to dispel that statement that seems to come up every once in a while to kind of going along with that. You mentioned like localization and like how an intact auditory processing system is important for just everyday life. What happens when an individual struggles with auditory processing? What do you see then?
Matt: [00:20:13] Okay, that's a great question. So in hearing, just like in vision, there's a lot of varied skills involved. Localization is probably the easiest one to give as an example there. And that's a very basic skill. Like we locate sound very low in our brainstem, as you know. So that's a very early neural skill. Um, the higher that you go in the brain, the more complicated and more complicated and more complicated the analyzes become, so that we can do what we're doing right now having a conversation. The more you understand on how much is happening in your brain, for you to be able to hear me utter a whole lot of sounds and understand the meaning of them is a phenomenally difficult task. And we just like we just think, oh, this is easy. What do you mean? We just naturally do this? But as a as a scientist and researcher on this, the more you drill down into what's happening, to make that easy is unbelievably complicated. So, um, what a lot of the research mine, as well as many others are, seem to indicate as of late. And Asha has this listed at their website as well. If you have some underdevelopment in areas of your auditory processing system or psychoacoustic system, those those deficits have recourse downstream from where the deficit lies. So what we're what we see are about three major red flags.
Matt: [00:22:05] The first is if there's an auditory processing deficit you were very likely to see just struggled classroom learning. So they're in a classroom. They're trying to to follow along. It's just not easy. And the the um there was a study done where they wanted to get students recruited for potential therapies. And they thought, well, if we if we recruit a lot of those that are struggling in the classroom and test them for this particular deficit because they're struggling, we'll probably have a higher incidence rate versus testing the ones that are absolutely the top of the class. The likelihood that they're have an auditory deficit is probably lower. So so the researchers tested the bottom 20% of the classroom for one auditory processing skill, the Dichotic listening test. And that showed that 50% of those 20%, the bottom 20% in the classroom, half of them had that dichotic listening deficit. Um, so that's where on the website, when you said around 10% or more have an it's based on that data that if you test the bottom 20%, half of them will struggle with with dichotic listening. Um, and then they went on to, to do some research on can we improve that? And I'll let the cat out of the bag. We can we can make that better.
Carrie: [00:23:48] Which is exciting, right.
Carrie: [00:23:51] Fantastic. Really.
Carrie: [00:23:52] But that can and that was one of my questions too. Um, a lot of our listeners, um, work with the pediatric population. And so you kind of indicated some of those red flags that you might see. Um, I don't know if there's any more, but about 10% of kids who are in classrooms could be like having some kind of auditory processing. And what you said about, you know, that, I mean, I, I was visualizing a foundation Basically, when you are talking about the auditory processing piece where, you know, if we don't remedy, like it's almost like building a house and, you know, a foundation, a strong foundation versus building a house on sand. Right? Like, there's a very much of a difference. And if we're not looking at that strong foundation first, then everything else is not going to be built up correctly. Correct?
Matt: [00:24:49] 100%. So I didn't even finish answering the question. So I'm glad you kept going. So the other two, uh, red flags that you will see in in these cases, a very high likelihood of an auditory deficit are children that are also struggling to develop language. Mhm. And lastly you you said the house the foundation part. So you cannot develop auditory language without auditory input. Like it's literally impossible. What won't happen. So you have to have intact auditory input to develop intact language. So language is nothing more than understanding the utterances of somebody speaking through the auditory system. Typically unless we're talking Braille or some different system of input.
Carrie: [00:25:42] Mhm.
Matt: [00:25:43] Beyond that what's built on language is reading. So if you don't have an intact language set you are going to struggle with reading. So if you see a struggling reader or somebody struggling with language or somebody struggling in the classroom, you're going to have a very high incidence of finding a significant auditory deficit in those individuals. Um, because I when I try to explain how when people say reading is auditory, it confuses people a lot because they think I thought reading was visual, like you use your eyes and that's true. You use your eyes to look at the the letters, but then you use your auditory system to assign sounds to the letters and then group the sounds into words. And then you use your language system to extract the meaning from those words. So when I say reading is auditory, if you look at the brain scans, there's a there's a higher activity in the auditory cortex than there is in the visual cortex. But it's a I would yes, it is a visual skill, but it's also an auditory skill. One of my favorite examples is if you read a quote or a text or a letter from somebody that you're really familiar with, you will often even read it in their voice, like you'll hear them reading to you through your phone. It's really I mean, it's it that's obviously an auditory, Um, event. Not a visual one, but it involves the eyes as well. So. So yeah, those those three are the the big downstream ripple effects. If your auditory system is not intact, how can you build higher level systems that are reliant on that base to give the information or to process the information upstream efficiently and effectively is really the point? Yeah.
Carrie: [00:27:45] Yeah. Great.
Carrie: [00:27:46] So kind of taking those red flags you talked about like students that may be having difficulty in the classroom, students that may have difficulty with any kind of language, you know, skills or processing or reading skills. Those are kind of would those then be maybe the red flags that an educator or a parent might see in their own child or a student? Um, to maybe make a referral or look more into that?
Matt: [00:28:16] Yes, absolutely. So I've done multiple studies now on this, and your listeners are probably going to be shocked. I was shocked as well. I was kind of under the impression that the in the profession, instead of what recent data show, that north of 10% of an elementary or primary school population has a deficit. We were thinking closer to 1%. So when we started seeing the numbers a lot more substantial, uh, it was very surprising. I was not expecting that. Um, the, uh, studies that we've done, we've done three of them currently, and we did a, did a vast testing of individuals that that were already diagnosed with a language delay or disorder and had reading difficulties. And of the studies. Two of them came back with 82% of these individuals that were struggling with language and reading had a significant auditory. So two of them had 82% and the third one had 83%. So this has been replicated three times. And if if you speech pathologist out there, if you've never done auditory processing work and you want to hold my feet to the fire on this and say, are you sure if I test my kids, I'm going to find like about eight out of ten of them have an auditory deficit. I will I will work with you to test your your clientele. It's and then I'll have another study up my sleeve to show the same thing. So yeah, I will I will if you're interested. Contact me and I will. I will work with you to to show you what I've seen again and again and again.
Carrie: [00:30:18] Yeah.
Carrie: [00:30:19] And that 10% is. Yeah. When I was in grad school, I mean, we were learning, like maybe 1%, maybe 2% of the population. And when you kind of put it that way, um, it's much more prevalent. And then we think about all of those students who are sitting in classrooms with these, you know, reading and language and classroom learning difficulties. And we haven't maybe touched that foundation yet. And, and discovered what, you know, the key point in that is but thinking about that, like, uh, I know and when I was in school, we learned like who? Like who should be tested for auditory processing. And I know that has changed a lot over the last, especially ten years. Can you maybe give a background of, you know who besides these red flag kids like what? What would a profile of someone that needs to be tested for auditory processing?
Carrie: [00:31:22] Okay.
Matt: [00:31:22] Yep, yep. So, um, I want to I want to start by saying what I've seen in the field since I graduated, which I will say is literally 20 years from now or ago. Um, so the profession has changed quite a bit. When I was going through grad school, the general consensus was there are children that are struggling with reading. Those might be children with dyslexia, or there might be children struggling with language. So those are your receptive language, kids. Um, and then there's a group that struggle with auditory processing. So those are your auditory processing kids. However, the studies have shown again and again and again that actually. So one of my favorite eye opening studies was out of England and they wanted to see what is the profile. So that's your question is what is what is the profile of somebody with an auditory deficit. What do they behave like. What are the what are the issues. And they so they did a group of children that had an APD diagnosis. And they questioned them with questionnaires. They questioned them just with um interview. They talked to the parents and the teachers just to get kind of a functional profile, okay. These kids with APD. And remember back when the study was done, there weren't really interventions. There were just labels. So you have an auditory processing deficit. How do you perform? And then they had another group of kids, um, that had a language disorder diagnosis or a language delay diagnosis. So two two separate groups. One had an auditory processing deficit.
Matt: [00:33:14] The other one had a language deficit. And then they they did these profiles of of strengths and weaknesses. And both groups presented identically in how they were showing difficulty. So back then we thought, oh language is one thing and your auditory processing is something completely different. And now we're refocusing and thinking actually the auditory processing deficit is causing these downstream delays because you need those earlier processes to occur correctly and efficiently for those higher level skills to actually be processed well. And what these researchers concluded was these two skills are related, not these are separate groups. So they found the reason they got an APD diagnosis versus a language delay diagnosis was who the parent was recommended to go see. If the parent said, my kiddo is really struggling and somebody said you should go see an audiologist, they got an APD diagnosis. If the parent was recommended, you should go see a speech language therapist. They got a language delay diagnosis. So the biggest variable in that study was the referral route. If you were referred to both, you would have probably got a diagnosis of both. Because language is auditory. Auditory occurs before the language. So they're literally hand in hand. So yeah. Um, so that was pretty exciting. So if there's struggles in the classroom, if there's struggles in noisier environments, if there's delays in language, if there's delays in reading, there's a very high chance that some of those lower auditory skills aren't developed, but I the exciting part is we can help develop those with targeted intervention.
Carrie: [00:35:17] Mhm.
Matt: [00:35:18] Acoustic pioneer and others, they just show fantastic results. It's really cool. We can fix it. Yay!
Carrie: [00:35:26] Yay!
Carrie: [00:35:26] And I can't wait to get into that part too. But before we get there, one other question I have about the testing part or like who to test would be can you just share? I mean, should we be testing like we we can't test a one year old? Well, I mean, maybe through electrophysiologic ways. Yeah. But, um, yeah, maybe just share a little bit about, like, ages and then, um, the other question I have would be like other like students who may have an additional diagnosis.
Carrie: [00:36:00] Mhm. Mhm.
Matt: [00:36:01] So that is fantastic. So the um. Previously. Historically. Uh non-physiological testing. So behavioral testing really started around age seven historically. Um, and that was based on the norms and how low the norms went. So you can't test anybody if you can't compare to normative data because you have no idea what these scores mean.
Carrie: [00:36:29] Mhm.
Matt: [00:36:30] Today, um, generally we're norm down to about age five for, for what I would call specific auditory processing deficits or psychoacoustic deficits, simply because the individual has to understand enough about the task that you can actually get a, get a reliable measurement. And some of those definitions or instructions just get too complicated for kiddos that are below five. So we know as a profession. The sooner that you find a concern, the the faster or the sooner that you intervene for that, the better result you see later down the road. Like if somebody has a, um, uh, an auditory deficit that you don't treat until ten, that's going to have longer term effects than if you treated them at six. However, below five, because it's really too tricky to get those auditory processing or psychoacoustic measures on those individuals, then you really sort of lean on the higher level checks like your language checks and just normal hearing check, because we still think a lot of these under developments can be due to like an undiagnosed Most otitis media or an occluded ear canal that nobody knew was occluded for a year or months. So, so normal hearing checks as well. But if there are language concerns at a three year old doing top down intervention or even some bottom up language intervention are still very helpful for for helping develop the early years skills. So, um, two things have been shown to be phenomenally useful for your clients exposure to very good language and exposure to music. Not loud crazy music, but just general music is a fantastic stimulation of the brain. It uses skills like localization, you know, like when you get that stereo going on, where the drum solo is coming out, the left speaker in the guitar or whatever you like to listen to piano, it's coming out of the other speaker.
Matt: [00:39:06] It's developing all of those skills. So, um, as a as a parent, we, uh, allow our children to use audio books pretty much as much as they want, because the more that you bombard that, that language system with good, solid language input, it is, it is. There's never too much good language to give to those. So, um, if I had concerns as a speech therapist or as a parent doing a language eval as young as you can and doing any bottom up language intervention that you can, um, that is appropriate, as well as exposing them to as much good language and music as possible, is the best thing you can do at that young age. So when they are older, five, six and up and we can test those more nuanced auditory processing areas. Um, hopefully they're going to be good to go by that point, because they've had enough of that stimulation that their brain can develop those skills early enough. But if not, hey, that's okay. We can we can focus more specifically the the higher or the older they get, the more developed they get. So um, so yeah, this is a we kind of again, we talk about that that baton handover between a speech speech language pathologist and an audiologist. And it's whoever put us together in graduate schools knew already that our professions should be side by side. Hearing and language go hand in hand.
Carrie: [00:40:46] Absolutely. So for so for a more specific like diagnoses or like testing about age five, there are other students That maybe should not be tested or should be included, that might have some additional needs or diagnosis.
Matt: [00:41:09] So I try to take as practical of approach as possible when I'm trying to determine who should be tested and who shouldn't. Um, if somebody is performing well, like they're they're doing well socially. They're doing well educationally. If you tested them and found a deficit, it doesn't seem to be impacting them. And we know from the studies that the incidence rates are far lower for those kiddos that are being very successful. But if they're already successful, do they really need an intervention? Even if you even if you did testing and found oh yeah, you do have a bit of a deficit here, we should fix that up. Well, fine. Like I'm not opposed to them getting intervention, but if they're already doing really well with language and reading and social environments in the classroom learning, then they're winning, you know. Good for you, buddy. I'm proud. That's great. Uh, but I think focusing on the ones that are struggling with language and reading, um, or classroom learning, those are the ones that really are swimming. You know, they're trying to keep their head above water. They're just doggy paddling through that information as much as they can. So if we give them some better skills to where they can really hone the language and the reading, uh, more rapidly and successfully, that's really the goal is to help those that are struggling the most.
Matt: [00:42:44] Now, there are some that, you know, you have cases that are multifaceted and there's there are neurological development issues and, um, uh, all sorts of other variables that that make, um, the auditory processing skill maybe not their top priority. You know, maybe mobility is is a limitation and they, they need physical therapy. Or there are times when even me would say, yeah, the auditory processing in this case is not your top priority. So, um, one of one of the approaches to to acoustic pioneer in particular, it was very early on before we released that, we decided, you know, what this these tools, this set of, of programs that we're trying to develop. The one thing that we can't replace with the computer program is a professional brain. We need we need speech therapists, and we need audiologists or educational psychologists to be involved, to make decisions like, okay, what are what are the areas of concern for this client or this student and what's the highest priority for them? Mhm. Um, so all of our programs require a brain like yours. Amazing. Dr. Spangler. So you can use the information available and then make the best case for how to move forward with that, with that student in school or with that client out of school. Um, and it's we will never replace that.
Matt: [00:44:31] That's always we need a professional to help us make those decisions. So, um, along with that. So sometimes the auditory processing is not the most important in a case, but other times it it could be the most important. So if you were a speech therapist working on a kiddo with their language and they're really struggling to develop that. If you haven't targeted the auditory deficit, your your progress in your language development is going to be hindered. Same with reading. If you're trying to develop reading skills in an individual and you don't address the auditory deficit, the the progress track is going to be a lot slower than if you do treat the auditory deficit. So it's um, I've heard multiple professionals start to get into it to see what happens. And they they tell me they go in these meetings and there's usually like a reading trajectory for success or whatever the skill, whatever the education skill is, spelling or math or whatever, they have these trajectories, like the way they're progressing, we expect them to be here by the end of the year. And then you put in some auditory deficit and those, those trajectories of predicted success increase. And they're like what? We we change the auditory system and now they're going to learn how to read faster. Yes that's right.
Carrie: [00:46:02] And that's so exciting right.
Carrie: [00:46:04] Fantastic.
Carrie: [00:46:05] It's really cool.
Matt: [00:46:06] When when you get to see those those cases, it's it's exciting. It's sort of, you know, hair on your arm like oh my gosh. It's really this is fantastic. Yay. We're doing good by our clients. And I think the more data that that we show, more more of the population has this issue than we anticipated.
Carrie: [00:46:30] Mhm.
Matt: [00:46:31] We can actually fix the deficit, which was that that was highly debated 20 years ago. Can we can know that there were many that said if there's a deficit you have a deficit. There's nothing you can do. So that's been shown to be not true. Mhm. Um, and if we fix the deficit You.
Carrie: [00:46:51] See.
Matt: [00:46:51] Life like real life changing skills improve in those individuals. So yeah, it's just fantastic time to to be in our profession. I'm loving it.
Carrie: [00:47:03] Yeah. No I it is it is fantastic. Is there a certain criteria like for diagnosing auditory processing. And do you call it a deficit. Do you call it a disorder. Does it does it really matter what you call it?
Matt: [00:47:23] Um this is a great question. So this is where our profession needs to really go back to the drawing board and come up with an accepted definition of auditory processing disorder. Um, I've tested many, many children. Uh, and I only apply a label of auditory processing Reprocessing disorder. If they're not receiving services in an education system or otherwise, that they would receive if I gave them that label. So with individuals that are already receiving special services because of a language disorder diagnosis, if we do some testing and discover there's also some auditory deficiencies in this in these students, then we I just call it a deficit at that point. Let's treat the deficit. Because when we do treat the deficit some months later, when the when the intervention is finished, when we retest it, the deficits are not there anymore. So I try to avoid applying the label of an auditory processing disorder because it seems kind of permanent. Whereas if we say deficit kind of lends a little bit more like this actually might be something that that is interminable or fixable or treatable, whereas disorder doesn't. So the current definition by both Ashton triple A of of criteria to qualify for an auditory processing disorder is very stringent and and um requires multi skills to be down and very significant results on both skills or more.
Matt: [00:49:14] Um and a lot of the science on who can benefit from intervention is uses criteria that's a lot less stringent. So I, I think we need to go back to the drawing board and not not so much. Ask what is the diagnostic criteria for a label. But ask who can receive significant benefit from intervention and what's that criteria. And use that more as a as a diagnostic criteria versus I'm just going to draw, you know, a very difficult score in multiple areas as the criteria. I so I know ASHA has altered their criteria, their recommended criteria a fair bit. But we need to have one of those good old audiology meet ups and say, look, we've done a lot of research in the last 5 to 10 years, whereas these criteria haven't been updated for longer than that. So we really need to to modernize our our criteria. In my humble opinion, I would I would love to be on that committee to to help make it where it's, it's a, it's an, it's a criteria that is going to highlight those that can really see benefit um, and not really include those that even if they have some concerns, they're really not going to see a whole lot of benefit from intervention. That's really the approach I would take if I could.
Carrie: [00:50:50] Yeah, no, that's good. And you can answer my question too, about that long standing like once diagnosed with a disorder, you know, auditory processing disorder, they have it for life. And that's not the case, which I think is, um, a good stopping point for like right this second, because I want to do part two of this podcast, which would be really we talk a lot about what auditory processing is and um, kind of the diagnosis and, you know, the testing piece of it and what happens. But I would like to do part two with what do we do next. What do you think about that Matt What do you think we can do it part two?
Matt: [00:51:37] That sounds really fun. I would love to join you again. That sounds great.
Carrie: [00:51:41] Okay.
Carrie: [00:51:43] Thank you for listening to part one of our series on auditory processing. I hope you found our discussion on the basics, red flags and the impact of auditory processing deficits. Insightful. Be sure to catch episode 70 where Dr. Barker and I will continue the conversation, focusing on next steps for managing auditory processing challenges. Don't forget to subscribe to the EmpowEAR Audiology podcast so you never miss an episode. If you're enjoying this show, please take a moment to leave a five star review and share it with your colleagues and friends.
Announcer: [00:52:26] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 68: empowEAR Audiology - Dr. Don Goldberg
Announcer: [00:00:00] Welcome to episode 68 of empowEAR Audiology with Doctor Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay. Welcome everyone. On today's episode of Empower Audiology, I have a returning guest with me, Dr. Don Goldberg, and I'm going to give you a little brief background about him. And I am also going to refer you to episode 33 of empowEAR Audiology, where you can listen and find out much more about Dr. Don's journey and his field, um, and his journey into the field of his work, um, in that episode. But to give you all a little introduction, he is a professor, a full professor at the College of Wooster in Ohio, and he is a member of the professional staff for the Section of Audiology and Hearing Implant Center at the Cleveland Clinic Foundation. He has published extensively, including being a coauthor of a book, book chapters, and other public publications he's presented both nationally and internationally. Dr. Don Goldberg is a fellow of ASHA, and he's also received the honor of the AG Bell Association. So today, I'm just excited to have Dr. Don Goldberg with me on the podcast. Um, and we're going to really be jumping into, uh, his release of the Test of Auditory Functioning by BlueTree Publishing. So, Dr. Don, welcome.
Don: [00:02:06] Thank you. Happy to be here, Carrie.
Carrie: [00:02:09] Yes. So I thought, um, the last time when we talked, uh, a while ago, you were in field testing for The Test of Auditory Functioning, and now it has been released. So I thought this would be a perfect opportunity, um, to touch base again and kind of share with our listeners a little bit about the Test of Auditory Functioning. So to can you give our listeners just a big overview, and then we'll kind of get into the details.
Don: [00:02:39] Sure, sure. Well, the big overview is um, having been a clinician as well as a professor for many years, I was always struck with there was one test many years back called the Test of Auditory Comprehension, not the TACL but the TAC. And essentially I had used that for 20 plus years and it no longer was available unless you were old like me, and or happened to own one of those big orange TAC. It came with a cassette tape. And essentially it was a wonderful measure of a hierarchical measure for children with hearing loss. And essentially I still have my TAC, but I knew that there was a need for something else for a variety of professionals. I happen to be an audiologist and a speech language pathologist, and as we got closer to release, we obviously needed to figure out who should we pitch this to. And I think of several professions educational audiologist, for sure. And in fact, the very first public presentation when it was finally in real easel form was at the Educational Audiology Association in the summer of last year. And then in the fall, it was available for purchase at ASHA. And we really want educational audiologists for sure, audiologists who happen to be in a position to probably have more time than they often times do for assessing beyond a SRT and a word recognition score or word discrimination, which is the wrong term.
Don: [00:04:17] Um, as well as that speech pathologist, our colleagues who have an isolated 1 or 2 children with hearing loss in their caseload, as well as teachers of the deaf. So a pretty broad market, if you will. And what I think I had as a driving force was to start with really the most basic level of listening, which would be for the purposes of this test, was just identifying long versus short. There needed to be a test for children, which is my primary, uh, uh, population that I'm typically seeing, including two month olds and above. And I also wanted to make sure that some of the critiques I had of the TAC were addressed in the TAF. For example, very few of our colleagues test in noise. Oftentimes, cochlear implant audiologists have very rigorous assessment. But many others are happy to get an SRT and do a word recognition test with pictures. And then if the kid doesn't have receptive vocabulary, they often say could not test. We really should never get around to saying we can't assess something about a child's speech perception ability. And there's lots more to the world than phonetically balanced words.
Don: [00:05:37] So that was why I put it together. And because there were few tests that in one measure, had it all in one unit. That's where I went with the TAF, starting with very basic levels of functioning and then ending with three subtests with competing noise. And we can talk about the details of the subtests, but the TAC would only test at zero signal to noise ratio. As you well know. That would be the speaker was as loud as the background noise. And that is not easy for a hearing person. And we elected in the TAF to go with plus ten plus five and end the TAF at zero signal to noise ratio. So I put together a lot of other thinking and measures in one measurement that we can get into. If you care to know about any of the details of subtests. But that was my driving force, and it's not on a cassette, it is on a USB. I guess I should dry hang it, you can't see it, but USB drive and then you can on um, really just download it to your computer and then work with the easel and the audio files, which are on the USB drive that you can put on your computer.
Carrie: [00:06:58] Okay. Yeah, that was a great overview of all those main components of the test. So, um, it sounds like there's different levels. People can purchase it through BlueTree and can they get it through Amazon as well, or is it just through BlueTree Publishing?
Don: [00:07:15] Well, there's a short period it was on Amazon, and I won't go into all the details of artificial intelligence, but because of one subtest being called male female discrimination, it was my daughter in law's voice and my voice to assess fundamental frequency. AI spit it out. We think that it sounded like I was discriminating males and females, and it violated the AI rules of Amazon, so they pulled it off. But I heard it's back. The safest bet is to be going through BlueTree, especially when we have updates of any changes in the USB drive, because that's where the manual and the score sheets are. So my recommendation is going through, um, uh, through BlueTree, not Amazon if it comes back or if it is back. And later on we can talk about if you're members of two different organizations, there is a discount through the end of 2024 for the Taff.
Carrie: [00:08:18] Okay. Well, great. So we got the easel, we got the USB. Can you share a little bit more about. You said there's different subtests, but you know, maybe get a little bit deeper into the different subtests and, um, how someone might want to look at that for testing.
Don: [00:08:37] Sure, sure. And one of my favorite components that evolved, uh, we share a particular kiddo. She made a YouTube video, I went to her home. And every subtest is demonstrated by one of our favorite kids, a bimodal kiddo. And you get to see a taste of 19 subtests. I had to get an older kid who would get to zero signal noise ratio, but we started with number one, where all she had to hear was, uh, vroom vroom for a fast car or hop, hop, hop. So she looked a little bored and yawned a little. But essentially, if you do go to BlueTree and it sounds like I'm trying to. I didn't do this to make money, but if you get it from Blue Tree, I get $0.10. But the real issue is that when you go to BlueTree, there are samples from the easel and you can see YouTube videos of the subtest. It really does start for a younger child or even an older child who has limited auditory abilities long versus short, high versus low. And then it moves to identifying a male versus a female, or a male versus a female versus a child's voice. And it really does move with some very, uh, kind of basic listening abilities, including just environmental sounds. But what I love is it also includes measures using the Ling six sounds. I am convinced most everyone knows those six sounds, but they may not understand why those six sounds exist. So you can find out a lot with the Ling six sounds. And then it moves to really a section of tests with learning to listen animal sounds, learning to listen vehicles, and a whole segment of pattern perception. For those of us who've been working for a while, I'm sure maybe most people should know the early speech perception, the ESP by Moog and Gears.
Don: [00:10:38] Well, that's a wonderful measure. I've adapted some of the subtests of one versus three syllables Spondee recognition, and including getting to single words not unlike WIPI and NUCHIPSmeasures. There's identifying one word in a field, two critical elements, like a dirty shoe versus a picture that has a clean shoe and a dirty boot and a clean boot. Moving on up to sequencing and listening comprehension. And those are really, I think, the heart of some of the really good information. All of it will provide you with guidance of where you need to work. No child would ever be administered one through 19 based on guidelines in the manual. If you have a child who is able to do basic pattern perception, you might jump specifically to, let's say, subtest ten, where it's one versus three syllables. If you have a child who is able to do something like a NUCHIPS or a WIPI, you could jump through just one critical element. Um, for a lot of the kids, I'm really interested in seeing how they do in noise to help justify. Although I don't think we need to justify that every kid should have a remote microphone in the classroom. But if you could show a child having trouble with noise, sometimes school districts are willing to say, oh, they're such good listeners. Well, it's hard to be a good listener when you're in a room full of kids and the teacher is not six inches from their head. So essentially, I have often times used tests with competing messages to really help say they're wonderful. But it's not so easy for any of us with competing messages. So I know I'm talking to the choir, but a remote microphone is non-negotiable for our children in the classroom.
Carrie: [00:12:42] Uh, definitely. And. Yeah. So. I love what you said about you're not going to do all 19 subtests. And friend that we both share. Um, that was in your video. I'm sure, um, could have really started at a, at a later level, but for purposes of demonstration, she did all 19. Do you kind of suggest like. You said that, you know, if you know where their level is, kind of start. Maybe what, like a level behind where you think they are so that you can kind of make sure that that's where they're, they're at. And then you then you go until they max out or when would you stop, I guess is my question. Yeah, a wonderful question.
Don: [00:13:28] So essentially, like a lot of tests, you can start at a sub-test and hopefully you're at a basal level that there's success. So essentially um, with the earliest subtests, I think you can just do it and quickly realize this is too hard or too easy for them, and you don't want kids crying. But essentially, if you were to start at, let's say, one critical element, you would want them to pass that sub test and then just move to the next sub test. The general criteria is to have at least two consecutive subtests passes, and then you get credit for all the previous subtests. And to stop when you have two successive or excuse me, two consecutive fails. But if you have a kid and you go to plus ten and they really break down in noise, I'm not going to torture a kid to do one more subtest. For each of the subtests, we're looking for an approximate 70% pass criteria. It does vary because sometimes there are nine items or ten items or even 15 items. It's all in the, uh, score sheet of what's criteria is for passing. If they haven't passed, you can go backwards, which is the nature of establishing a basal and you can use your judgment. Okay. We really are at a fail. That's a really poor score that we absolutely should stop, but that is available. Um, when I did the field testing, um, I would usually know from walking down the hallway, um, that I think this kid probably could go to number blank. And then if I was wrong, I'll go backwards. The average administration time, I didn't keep all the data on every kid, but I would say most administration times, if you start appropriately, should be approximately 10 to 15 minutes. Okay. And that's pretty good. In the busy caseload of speech pathologists and educational audiologists, it is.
Carrie: [00:15:31] And that sounds like you can get a lot of great information in that 10 to 15 minutes of time. So with all of that information, what do you what what goes next like, I mean, does it depend who's giving the test or how do you use that information.
Don: [00:15:52] Right. Well, I see two primary functions of administering the TAF. One is it is not norm reference, norm referencing and standardization with kids with hearing loss is a massive project because of all the variables age of onset, use of technology, age of the child and input. But the real takeaway is you get a criterion baseline data point. The maximum score is 200, so you'd be able to get a score and on a yearly basis re-administer the test. You have a general idea then of I should start at Blankety blank number, and that way you'd be able to demonstrate growth in auditory abilities on a yearly basis. So from a IEP and a justification of our services, it really does provide a yearly longitudinal comparison of child A to child A. But what I'm planning to do and I can't promise it's next year. But as I retire from teaching, my goal is a companion document that would give examples of okay, when a child breaks down with basic sequencing, what are some of the therapy activities that you can do to not teach the test, but to teach the task. I was trained by Helen Beebe years and years ago, and what I found a good clinician does is not use a test for a number or a standard score alone, but knows where the child breaks down is a segue to where we need to reinforce. If you have a child not doing environmental sounds, then go out on listening walks or get some simulations of in various environmental sounds.
Don: [00:17:42] That's a tricky one, because your cell phone sounds different than my cell phone. But the real takeaway is it was built to be comparison of a child, and also guide a clinician or direct others who are doing the therapy of we need to work on basic listening comprehension. And listening comprehension is not just answering questions, but I also hope. To if I keep at it. Work to develop listening comprehension. That also goes to even higher level skills. Listening in noise is a good higher level skill. But what about listening and being able to conclude what's the main idea of the story? To learn vocabulary that's embedded in the story. When I'm telling you about a nocturnal animal, I hope the kid would know from context. That's an animal who hunts at night. So those are some of the takeaways that it's not to get a number. In fact, the number may be the least interesting part. But where can we go with the breakdown? And literally if you have a child not doing pattern perception, you're going to be needing to intervene before you can just get to word identification in a field. So that's where I'm thinking. And quite frankly, being a clinician who still sees kids every week, I think that's part of why I did this. I need to now work on such and such based on breakdown.
Carrie: [00:19:14] So, so criterion reference that you're comparing that kid to that kid that, um, for auditory skills development, what would you say? You work mainly with kids, but what would you say the age range would be and the population that you would want to be testing? Right.
Don: [00:19:33] It's such a great question. And if you hadn't asked, I'd want to make sure you heard it. I really had a wide range of children. My youngest kids who were successful in the administration were two years old. They were in parent infant programs. I do also have a superstar two year old, but he got to go really high. But the problem when I was field testing is it wasn't on an easel. It was all on the computer screen and they didn't know me. I was in four continents, so they were on a parent's lap, and if they weren't willing to touch the screen to show me their answer, that was a problem. Most kids in their twos get around to pointing to pictures, so I'm hoping the youngest would likely be two year olds. But I think if you are their clinician, you'll be much more successful. They may need to be older, but in my very extensive field testing and I've been doing the TAF on a lot of my older kids because I'm just dying to know how do they do with plus ten plus five and zero? I have yet to have anyone under 13. That's the oldest I've ever administered it. No one under 13 has ever gotten 100% of the final subtest items, so it appears to be a fairly wide range.
Don: [00:20:58] But interestingly enough, I have two subtests that you could administer to an adult. One is the first subtest of long versus short. The adult is not going to listen to a race car and a bunny. Go hop, hop, hop. But they go ah versus ah ah ah. We do have some late adult uh, later deafened, I mean, excuse me later implanted and long term deafened individuals that really may not get long versus short. Similarly with the Ling, the subtest of the Ling also includes an adult subtest where they're not pointing to an ice cream cone for um, but they're pointing to the M for that sound. So I'm not developing this for adults, but it is adaptable, and we are needing to realize not everyone gets an implant early. Not everyone has immediate amplification. So if you have a child with multiple disabilities or late identified late access to technology, this could go above a 13 year old. But the primary field testing was for 2 to 13 and I must go on record. Not every two year old gave me much information, but I tried.
Carrie: [00:22:17] Yeah, well, at least you can get a somewhat of a baseline and you can document it. And then a year later when you go back, you hopefully get more information and you have that comparison. Right.
Don: [00:22:30] And interestingly enough, I got great feedback from educational audiology colleagues at EAA. Some people asked, well, could you do it with tele administration? The concern would be the decibel level of presentation has to be preserved. And will a child, unless the clinician on site has the easel? I think there's some challenges, but someone said, could you just administer a voice? It was not developed to be administered live voice. There's a calibration tone, which you must do before the initial administration of any subtests, not each one, but the initial administration of your test time. Youtube video shows calibration. So if there's anyone out there going, I don't know how to calibrate, you can do it pretty easy with downloading a sound level meter or having a sound level meter, but you could practice with a child live voice and just make sure you noted that subtest one was administered live voice, not with the audio file at 76 DBA, and then maybe six months later you could administer it using the audio file. So I'm not against practice to make sure the child can do the task. But for a reliable and valid measure, you really are not going to be teaching the test. But and the test was not developed to be done live voice. But I had a really pretty impaired kid, and we went right to male on my voice for to make sure that the child could point to the male character. And then we tried male versus female on the audio file. We didn't give anything away.
Carrie: [00:24:16] Yeah. No that's good. And kind of the expand a little bit more on administering the test. Um, it is recorded, but for those, does it need to be in a sound booth. Where can you do the testing?
Don: [00:24:30] Well, as you can see from the YouTube, we did it in our friend's dining room. I would encourage a quiet area, so her little sister had to be quiet in the background. But the real takeaway is it was not developed to be in a sound booth. It could be a clinician space, be it an educational audiologist or teacher of the deaf or even a teacher could be administered if they have some experience, and I would experience doing it with a one of your own kids or a older child, just to get used to going to the subtests and the subfile for the playing the audio clips. But the real takeaway is it was not developed to be routed through an audiometer. It could be, but there is no need a quiet space and making sure that from the calibration tone that's embedded in the audio files, that you get to 76 DBA where the child is sitting. So you just position the computer and the space chair and put the sound level meter at the child's head. And there, you know, vary your volume control to get to that. Always administration at the same intensity level.
Carrie: [00:25:49] Okay. And I guess, um, another question would be. Uh, what are some of the challenges that you've kind of heard from people out in the field, like giving the test or, um, follow up with it?
Don: [00:26:06] Great, great. And I keep asking for more and more feedback. And I have an email where you can send me questions not just to the college or the hospital. Um, but the real takeaway is I have had good reports on the images. They absolutely are beautiful illustrations. The, uh, illustrator, um, is in China and didn't speak English, so it was quite interesting to giving her feedback about the various images I took into consideration DEI, diversity, equity and inclusion. That there are various individuals of color. Uh, and there are really pictures that I think when I'm going buck, buck, buck for a chicken, they'll know that's the picture of a chicken and they'll hopefully understand my bok bok bok is a chicken. So I have good feedback of the images. I would say I purposely, um, because of, uh, issues of developing, uh, test design. It is color coded on the right side of each image. So you'd be able to flip to what other whatever subtest you need to go to. It doesn't have tabs, but it's color coded, which turns out to be very helpful. I would say that the one thing that does probably take the most kind of practice is making sure on your computer, you can easily navigate to audio files, the listing of the subtests, and some of the subtests to a practice items.
Don: [00:27:37] So it's really a matter of getting to be able to navigate. And this almost 70 year old, if I'm able to navigate some of the audio files, I know everyone else can. But the real takeaway is there's a little kind of I use the word kind of, uh, kind of quirkiness until you really are great with your finger getting to the right audio file. But the flipping, the scoring in general has been well received by folks out there. And literally, with the exception of this, is almost humorous from a speech pathology standpoint. I now know there are no skunks in Australia. There is a story about a skunk, but I like to think everyone will identify that black animal with a white stripe is a skunk, and you do need to take into consideration. All of my field testing was on English speaking kids, including kids in Israel, as well as, um, you know, I had a lot of kids who are bilingual Spanish speakers in Texas, but English was a language they could understand or it wouldn't be appropriate. But when you do things like the Ling sounds, my English, not New York accent, but I am from New York.
Don: [00:28:50] My English of the production of vowels will be a different production than you might find in different parts of the world, so I'm alerted to the skunks and that my vowels don't quite sound like all the vowels in Australia. Um, and we aren't yet figuring out the exact solution, but it might be that we might be able to rerecord with other speakers. You know, long term. It'd be great that this was in Spanish, great if it was in Mandarin. But, um, I'm not going to live long enough to do all that, I don't think. But we certainly could do a Ling subtest with a rerecording. Um, but, you know, geographic, uh, accents are kind of hard to conquer throughout the whole world. But it was very interesting. I didn't know that in England, they really don't have that many railroad crossings like we have in the US. But the good news is the picture of the railroad crossing doesn't influence them getting the right answer. When the story talked about a car stopping at the train intersection. So you learn a little things culturally to be sensitive to.
Carrie: [00:30:03] Yeah, I'm sure that was a huge challenge when you're kind of basically doing an international like study, you know, data collection and the pilot of the test, and then you find all these little nuances that happen in different countries.
Don: [00:30:20] Yeah. And actually one of my favorite was in field testing. We had a few questions that showed emojis. Kids are so into emojis. But to be on the safe side, because I would point out that's a happy face. And that was a sad face. And that's an angry face. I have labeled each of the emojis with the term, so there's no confusion about frightened versus, you know, sick, you know, a green face emoji with someone who is sick. So that was interesting. And because of generational issues, I even needed to label the grandfather and the grandmother, keeping in mind they're not always called grandfather grandmother. But you know, a lot of people have pretty young looking grandfathers. I didn't want that to be confused with a youthful parent versus a grandparent in one of the images that they're identifying. So I learned a lot about just things that sometimes you never would think about because of the feedback from the kids who would look quizzically at this image going, I'm not sure which emoji you're talking about. So things have been updated before it went into the easel.
Carrie: [00:31:29] Okay. Yeah, just kind of going back to a question that I should have asked you at the beginning, for how long did it take you to do all of this? Because that is like a huge undertaking. And I know you've been talking about it for several years now, and it's been stirring in your brain for longer.
Don: [00:31:49] Well, it's funny because when it did come out, my favorite image that was reposted by Karen Anderson and her website was, it's finally here. And a lot of people go, yeah, it's finally here. Um, the actual assembling of the images, which, you know, took some time from our illustrator and, uh, uh, China. It was right before the pandemic and a sabbatical that I was getting all the images for the whole test. So that was probably a six month time period of approving the hierarchy of the images. The field testing was on another sabbatical, and I almost was trapped in Australia because it was literally the spring break that the pandemic came to us. And I guess I could have stayed in Australia for months, but I got home on the last plane before it would have been quarantined, but from me. Tired at the pandemic last two Decembers ago, I was in Seattle with Robert O'Brien, and literally the transfer of the images, the recordings that were done at a hospital setting in a recording studio. It came out between December of 22, and then we were meeting and that following summer that it turned into this easel with the audio file. So the ending went faster than the preliminary. But I've been musing about hierarchy of listening function probably my whole whole career. And I've always loved this TAC but I knew we needed an update, and it's an update. And some in my mind to say the least. With all due respect to the TAC developers and Karen Anderson, who is one of the greatest cheerleaders going, Don, you got to do this TAF and other people saying you were talking about standardizing the TAC, where's yours? And it was a multi year process slowed down by the pandemic.
Carrie: [00:33:56] Well, now it's in full form. So that's the exciting part of it. And, uh, people can get it too. Is there anything that I forgot or didn't ask you that you think listeners need to know about the, um, Test of Auditory Functioning?
Don: [00:34:14] Sure. I guess the two is. And this is not me being a salesman, other than I want people to benefit that if you are a member of EAA, you can go to the EAA website. And they have a recorded webinar that I did, I believe, in October. Uh, no, actually it was springtime. Um, I have a webinar from March and you can down or you can sign up and watch the webinar. And that was, uh, March of this year. And essentially, if you're a member of EAA, there's a 10% discount for the rest of the year to order it. And note I believe the code, but please check with the EAA folks. It was EAA 2024, uh, if you're a member. Similarly, with AG Bell, there's a 10% discount on all of BlueTree's material, including the TAF with AG Bell 2024. So that could be very helpful. Um, and I would also say if you're uncertain, you can get the links for the YouTube video and see the easel in action. It's a great picture of my friend doing every subtest, but, uh, the best site would probably be BlueTree publishing.com. I always embarrass because I don't always say that correctly, but I'm almost sure that's correct. Um, it's, uh, Blue Tree, one word publishing, and they're based in the state of Washington, so I'd say those would be helpful resources. And again, don't be afraid about the calibration. Uh, you can download sound level meters, for example, from NIOSH for free. And, uh, you know, I welcome questions and I also welcome feedback. In fact, I just was talking with one of Carrie’'s very esteemed colleagues in educational audiology, and she said she, you know, was having a little trouble with getting the audio files.
Don: [00:36:09] And I think that's nothing reflecting her. I have trouble, and I have pretty good experience with the audio files. But once you're once you're flying with the delivery and you're in the right subtest, which is guided by the manual, um, you definitely can do this in a fairly short period of time. And I'd say the last item, um, our mutual friend Carol Flexer gave me a wonderful review, so please feel free to read that. But I think she was being critical. And she said the idea that this really has been long awaited to meet a need. But quite frankly, um, I think it's one of those tests that I hope people value and will be important in their clinical practice. And what better to actually have someone who actually is still seeing those kids in that age range? Um, and, you know, I'm obviously very proud of the work it took, but I'm more proud that more colleagues who might not have learned much about auditory development now have a measure and can really, uh, have a dialogue. I would want to also mention that the Hearing First organization is doing wonderful, wonderful LSL and audiology webinars and courses. And I think through the middle of August, I'm pretty sure I have that right. You can sign up for a four week seminar I'm doing for hearing first about assessment and auditory development. And not just that you sign up for my course, but tons of incredible pediatric audiology offerings as well as LSL training. Uh, so Hearing First would be another resource to be aware of.
Carrie: [00:37:54] Okay. And what I can do and the show notes is I can link um, the EAA website for the webinar and AG Bell as well as Hearing First, um, and then I if you want, I can put your email in there, um, that you want people to get Ahold of you if they have any questions or feedback. Um, we can definitely link all of that up in the show notes.
Don: [00:38:17] And the manual and the score sheet and script are all on the USB. But in the meantime, I'll also provide you with the list of, uh, Ella and her YouTube, because essentially one through 19 are in different segments. Um, and I think although they're very brief segments, you really will get a sample of the sound as well as the easel and that, uh, how hard she worked to go from 1 to 19 in her dining room.
Carrie: [00:38:51] Oh, good. Well, I am so glad that we had the opportunity today. To get together on this podcast and really dive a little bit deeper into the Test of Auditory Functioning and how it can be used for, you know, a variety of different kids, um, from just the early listeners to maybe, um, late listeners who are going to be considering getting cochlear implants or hearing aids and just to kind of figure out, hey, what are some good IEP goals or therapy goals that we want our kids who are deaf and hard of hearing to get to next. And this is a great tool to, um, figure that out and benchmark and then come back to to see where the progress has gone. So thank you, Dr. Don, for doing if I.
Don: [00:39:35] Could, just as you're talking, I've thought of one other thing. From a population standpoint, children with every possible technology were part of the field testing, including two implants, two hearing aids, bimodal soft band kids, a fair number of kids with microtia and atresia that were using soft bands. And I would make the note that I did my dissertation research at a school for the deaf in Florida. And essentially, sometimes people are shocked to wow, you went to a place that there's a lot of signing. I look forward to people acknowledging that some of those children at schools for the deaf, which always will have a role, are also kids who may be getting cochlear implants and those kids or just even wearing some technology. Not all that. Those kids also have auditory potential. And essentially the idea of an auditory verbal therapist reaching out to our colleagues at schools for the deaf may sound surprising, but it's with great sincerity every technology. If you're totally not auditory, this would not make much sense. But we do have kids that people just need direction to demonstrate. They can hear a male versus a female voice. They can do a high versus a low, and where they are, they can move forward. And that's really how I look at every child. We all have our stars and I'm always proud. But sometimes those more involved kids who make the small gains might really be the ones we should take the greatest joy in. And I made that quite sincerely about all children with various degrees of hearing loss.
Carrie: [00:41:18] Yeah, yeah. No, that's a great point to bring up that it really can be used for, for all kids. And it gives us a benchmark for moving forward, um, in auditory development. So sorry for.
Don: [00:41:30] That late late Add.
Carrie: [00:41:32] Yeah that is great. Thank you. But um, again, it is always great to connect with you and find out what is happening. And I really appreciate your time today on the EmpowEAR Audiology podcast.
Don: [00:41:46] Thank you. Appreciate it.
Announcer: [00:41:48] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 68 of empowEAR Audiology with Doctor Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay. Welcome everyone. On today's episode of Empower Audiology, I have a returning guest with me, Dr. Don Goldberg, and I'm going to give you a little brief background about him. And I am also going to refer you to episode 33 of empowEAR Audiology, where you can listen and find out much more about Dr. Don's journey and his field, um, and his journey into the field of his work, um, in that episode. But to give you all a little introduction, he is a professor, a full professor at the College of Wooster in Ohio, and he is a member of the professional staff for the Section of Audiology and Hearing Implant Center at the Cleveland Clinic Foundation. He has published extensively, including being a coauthor of a book, book chapters, and other public publications he's presented both nationally and internationally. Dr. Don Goldberg is a fellow of ASHA, and he's also received the honor of the AG Bell Association. So today, I'm just excited to have Dr. Don Goldberg with me on the podcast. Um, and we're going to really be jumping into, uh, his release of the Test of Auditory Functioning by BlueTree Publishing. So, Dr. Don, welcome.
Don: [00:02:06] Thank you. Happy to be here, Carrie.
Carrie: [00:02:09] Yes. So I thought, um, the last time when we talked, uh, a while ago, you were in field testing for The Test of Auditory Functioning, and now it has been released. So I thought this would be a perfect opportunity, um, to touch base again and kind of share with our listeners a little bit about the Test of Auditory Functioning. So to can you give our listeners just a big overview, and then we'll kind of get into the details.
Don: [00:02:39] Sure, sure. Well, the big overview is um, having been a clinician as well as a professor for many years, I was always struck with there was one test many years back called the Test of Auditory Comprehension, not the TACL but the TAC. And essentially I had used that for 20 plus years and it no longer was available unless you were old like me, and or happened to own one of those big orange TAC. It came with a cassette tape. And essentially it was a wonderful measure of a hierarchical measure for children with hearing loss. And essentially I still have my TAC, but I knew that there was a need for something else for a variety of professionals. I happen to be an audiologist and a speech language pathologist, and as we got closer to release, we obviously needed to figure out who should we pitch this to. And I think of several professions educational audiologist, for sure. And in fact, the very first public presentation when it was finally in real easel form was at the Educational Audiology Association in the summer of last year. And then in the fall, it was available for purchase at ASHA. And we really want educational audiologists for sure, audiologists who happen to be in a position to probably have more time than they often times do for assessing beyond a SRT and a word recognition score or word discrimination, which is the wrong term.
Don: [00:04:17] Um, as well as that speech pathologist, our colleagues who have an isolated 1 or 2 children with hearing loss in their caseload, as well as teachers of the deaf. So a pretty broad market, if you will. And what I think I had as a driving force was to start with really the most basic level of listening, which would be for the purposes of this test, was just identifying long versus short. There needed to be a test for children, which is my primary, uh, uh, population that I'm typically seeing, including two month olds and above. And I also wanted to make sure that some of the critiques I had of the TAC were addressed in the TAF. For example, very few of our colleagues test in noise. Oftentimes, cochlear implant audiologists have very rigorous assessment. But many others are happy to get an SRT and do a word recognition test with pictures. And then if the kid doesn't have receptive vocabulary, they often say could not test. We really should never get around to saying we can't assess something about a child's speech perception ability. And there's lots more to the world than phonetically balanced words.
Don: [00:05:37] So that was why I put it together. And because there were few tests that in one measure, had it all in one unit. That's where I went with the TAF, starting with very basic levels of functioning and then ending with three subtests with competing noise. And we can talk about the details of the subtests, but the TAC would only test at zero signal to noise ratio. As you well know. That would be the speaker was as loud as the background noise. And that is not easy for a hearing person. And we elected in the TAF to go with plus ten plus five and end the TAF at zero signal to noise ratio. So I put together a lot of other thinking and measures in one measurement that we can get into. If you care to know about any of the details of subtests. But that was my driving force, and it's not on a cassette, it is on a USB. I guess I should dry hang it, you can't see it, but USB drive and then you can on um, really just download it to your computer and then work with the easel and the audio files, which are on the USB drive that you can put on your computer.
Carrie: [00:06:58] Okay. Yeah, that was a great overview of all those main components of the test. So, um, it sounds like there's different levels. People can purchase it through BlueTree and can they get it through Amazon as well, or is it just through BlueTree Publishing?
Don: [00:07:15] Well, there's a short period it was on Amazon, and I won't go into all the details of artificial intelligence, but because of one subtest being called male female discrimination, it was my daughter in law's voice and my voice to assess fundamental frequency. AI spit it out. We think that it sounded like I was discriminating males and females, and it violated the AI rules of Amazon, so they pulled it off. But I heard it's back. The safest bet is to be going through BlueTree, especially when we have updates of any changes in the USB drive, because that's where the manual and the score sheets are. So my recommendation is going through, um, uh, through BlueTree, not Amazon if it comes back or if it is back. And later on we can talk about if you're members of two different organizations, there is a discount through the end of 2024 for the Taff.
Carrie: [00:08:18] Okay. Well, great. So we got the easel, we got the USB. Can you share a little bit more about. You said there's different subtests, but you know, maybe get a little bit deeper into the different subtests and, um, how someone might want to look at that for testing.
Don: [00:08:37] Sure, sure. And one of my favorite components that evolved, uh, we share a particular kiddo. She made a YouTube video, I went to her home. And every subtest is demonstrated by one of our favorite kids, a bimodal kiddo. And you get to see a taste of 19 subtests. I had to get an older kid who would get to zero signal noise ratio, but we started with number one, where all she had to hear was, uh, vroom vroom for a fast car or hop, hop, hop. So she looked a little bored and yawned a little. But essentially, if you do go to BlueTree and it sounds like I'm trying to. I didn't do this to make money, but if you get it from Blue Tree, I get $0.10. But the real issue is that when you go to BlueTree, there are samples from the easel and you can see YouTube videos of the subtest. It really does start for a younger child or even an older child who has limited auditory abilities long versus short, high versus low. And then it moves to identifying a male versus a female, or a male versus a female versus a child's voice. And it really does move with some very, uh, kind of basic listening abilities, including just environmental sounds. But what I love is it also includes measures using the Ling six sounds. I am convinced most everyone knows those six sounds, but they may not understand why those six sounds exist. So you can find out a lot with the Ling six sounds. And then it moves to really a section of tests with learning to listen animal sounds, learning to listen vehicles, and a whole segment of pattern perception. For those of us who've been working for a while, I'm sure maybe most people should know the early speech perception, the ESP by Moog and Gears.
Don: [00:10:38] Well, that's a wonderful measure. I've adapted some of the subtests of one versus three syllables Spondee recognition, and including getting to single words not unlike WIPI and NUCHIPSmeasures. There's identifying one word in a field, two critical elements, like a dirty shoe versus a picture that has a clean shoe and a dirty boot and a clean boot. Moving on up to sequencing and listening comprehension. And those are really, I think, the heart of some of the really good information. All of it will provide you with guidance of where you need to work. No child would ever be administered one through 19 based on guidelines in the manual. If you have a child who is able to do basic pattern perception, you might jump specifically to, let's say, subtest ten, where it's one versus three syllables. If you have a child who is able to do something like a NUCHIPS or a WIPI, you could jump through just one critical element. Um, for a lot of the kids, I'm really interested in seeing how they do in noise to help justify. Although I don't think we need to justify that every kid should have a remote microphone in the classroom. But if you could show a child having trouble with noise, sometimes school districts are willing to say, oh, they're such good listeners. Well, it's hard to be a good listener when you're in a room full of kids and the teacher is not six inches from their head. So essentially, I have often times used tests with competing messages to really help say they're wonderful. But it's not so easy for any of us with competing messages. So I know I'm talking to the choir, but a remote microphone is non-negotiable for our children in the classroom.
Carrie: [00:12:42] Uh, definitely. And. Yeah. So. I love what you said about you're not going to do all 19 subtests. And friend that we both share. Um, that was in your video. I'm sure, um, could have really started at a, at a later level, but for purposes of demonstration, she did all 19. Do you kind of suggest like. You said that, you know, if you know where their level is, kind of start. Maybe what, like a level behind where you think they are so that you can kind of make sure that that's where they're, they're at. And then you then you go until they max out or when would you stop, I guess is my question. Yeah, a wonderful question.
Don: [00:13:28] So essentially, like a lot of tests, you can start at a sub-test and hopefully you're at a basal level that there's success. So essentially um, with the earliest subtests, I think you can just do it and quickly realize this is too hard or too easy for them, and you don't want kids crying. But essentially, if you were to start at, let's say, one critical element, you would want them to pass that sub test and then just move to the next sub test. The general criteria is to have at least two consecutive subtests passes, and then you get credit for all the previous subtests. And to stop when you have two successive or excuse me, two consecutive fails. But if you have a kid and you go to plus ten and they really break down in noise, I'm not going to torture a kid to do one more subtest. For each of the subtests, we're looking for an approximate 70% pass criteria. It does vary because sometimes there are nine items or ten items or even 15 items. It's all in the, uh, score sheet of what's criteria is for passing. If they haven't passed, you can go backwards, which is the nature of establishing a basal and you can use your judgment. Okay. We really are at a fail. That's a really poor score that we absolutely should stop, but that is available. Um, when I did the field testing, um, I would usually know from walking down the hallway, um, that I think this kid probably could go to number blank. And then if I was wrong, I'll go backwards. The average administration time, I didn't keep all the data on every kid, but I would say most administration times, if you start appropriately, should be approximately 10 to 15 minutes. Okay. And that's pretty good. In the busy caseload of speech pathologists and educational audiologists, it is.
Carrie: [00:15:31] And that sounds like you can get a lot of great information in that 10 to 15 minutes of time. So with all of that information, what do you what what goes next like, I mean, does it depend who's giving the test or how do you use that information.
Don: [00:15:52] Right. Well, I see two primary functions of administering the TAF. One is it is not norm reference, norm referencing and standardization with kids with hearing loss is a massive project because of all the variables age of onset, use of technology, age of the child and input. But the real takeaway is you get a criterion baseline data point. The maximum score is 200, so you'd be able to get a score and on a yearly basis re-administer the test. You have a general idea then of I should start at Blankety blank number, and that way you'd be able to demonstrate growth in auditory abilities on a yearly basis. So from a IEP and a justification of our services, it really does provide a yearly longitudinal comparison of child A to child A. But what I'm planning to do and I can't promise it's next year. But as I retire from teaching, my goal is a companion document that would give examples of okay, when a child breaks down with basic sequencing, what are some of the therapy activities that you can do to not teach the test, but to teach the task. I was trained by Helen Beebe years and years ago, and what I found a good clinician does is not use a test for a number or a standard score alone, but knows where the child breaks down is a segue to where we need to reinforce. If you have a child not doing environmental sounds, then go out on listening walks or get some simulations of in various environmental sounds.
Don: [00:17:42] That's a tricky one, because your cell phone sounds different than my cell phone. But the real takeaway is it was built to be comparison of a child, and also guide a clinician or direct others who are doing the therapy of we need to work on basic listening comprehension. And listening comprehension is not just answering questions, but I also hope. To if I keep at it. Work to develop listening comprehension. That also goes to even higher level skills. Listening in noise is a good higher level skill. But what about listening and being able to conclude what's the main idea of the story? To learn vocabulary that's embedded in the story. When I'm telling you about a nocturnal animal, I hope the kid would know from context. That's an animal who hunts at night. So those are some of the takeaways that it's not to get a number. In fact, the number may be the least interesting part. But where can we go with the breakdown? And literally if you have a child not doing pattern perception, you're going to be needing to intervene before you can just get to word identification in a field. So that's where I'm thinking. And quite frankly, being a clinician who still sees kids every week, I think that's part of why I did this. I need to now work on such and such based on breakdown.
Carrie: [00:19:14] So, so criterion reference that you're comparing that kid to that kid that, um, for auditory skills development, what would you say? You work mainly with kids, but what would you say the age range would be and the population that you would want to be testing? Right.
Don: [00:19:33] It's such a great question. And if you hadn't asked, I'd want to make sure you heard it. I really had a wide range of children. My youngest kids who were successful in the administration were two years old. They were in parent infant programs. I do also have a superstar two year old, but he got to go really high. But the problem when I was field testing is it wasn't on an easel. It was all on the computer screen and they didn't know me. I was in four continents, so they were on a parent's lap, and if they weren't willing to touch the screen to show me their answer, that was a problem. Most kids in their twos get around to pointing to pictures, so I'm hoping the youngest would likely be two year olds. But I think if you are their clinician, you'll be much more successful. They may need to be older, but in my very extensive field testing and I've been doing the TAF on a lot of my older kids because I'm just dying to know how do they do with plus ten plus five and zero? I have yet to have anyone under 13. That's the oldest I've ever administered it. No one under 13 has ever gotten 100% of the final subtest items, so it appears to be a fairly wide range.
Don: [00:20:58] But interestingly enough, I have two subtests that you could administer to an adult. One is the first subtest of long versus short. The adult is not going to listen to a race car and a bunny. Go hop, hop, hop. But they go ah versus ah ah ah. We do have some late adult uh, later deafened, I mean, excuse me later implanted and long term deafened individuals that really may not get long versus short. Similarly with the Ling, the subtest of the Ling also includes an adult subtest where they're not pointing to an ice cream cone for um, but they're pointing to the M for that sound. So I'm not developing this for adults, but it is adaptable, and we are needing to realize not everyone gets an implant early. Not everyone has immediate amplification. So if you have a child with multiple disabilities or late identified late access to technology, this could go above a 13 year old. But the primary field testing was for 2 to 13 and I must go on record. Not every two year old gave me much information, but I tried.
Carrie: [00:22:17] Yeah, well, at least you can get a somewhat of a baseline and you can document it. And then a year later when you go back, you hopefully get more information and you have that comparison. Right.
Don: [00:22:30] And interestingly enough, I got great feedback from educational audiology colleagues at EAA. Some people asked, well, could you do it with tele administration? The concern would be the decibel level of presentation has to be preserved. And will a child, unless the clinician on site has the easel? I think there's some challenges, but someone said, could you just administer a voice? It was not developed to be administered live voice. There's a calibration tone, which you must do before the initial administration of any subtests, not each one, but the initial administration of your test time. Youtube video shows calibration. So if there's anyone out there going, I don't know how to calibrate, you can do it pretty easy with downloading a sound level meter or having a sound level meter, but you could practice with a child live voice and just make sure you noted that subtest one was administered live voice, not with the audio file at 76 DBA, and then maybe six months later you could administer it using the audio file. So I'm not against practice to make sure the child can do the task. But for a reliable and valid measure, you really are not going to be teaching the test. But and the test was not developed to be done live voice. But I had a really pretty impaired kid, and we went right to male on my voice for to make sure that the child could point to the male character. And then we tried male versus female on the audio file. We didn't give anything away.
Carrie: [00:24:16] Yeah. No that's good. And kind of the expand a little bit more on administering the test. Um, it is recorded, but for those, does it need to be in a sound booth. Where can you do the testing?
Don: [00:24:30] Well, as you can see from the YouTube, we did it in our friend's dining room. I would encourage a quiet area, so her little sister had to be quiet in the background. But the real takeaway is it was not developed to be in a sound booth. It could be a clinician space, be it an educational audiologist or teacher of the deaf or even a teacher could be administered if they have some experience, and I would experience doing it with a one of your own kids or a older child, just to get used to going to the subtests and the subfile for the playing the audio clips. But the real takeaway is it was not developed to be routed through an audiometer. It could be, but there is no need a quiet space and making sure that from the calibration tone that's embedded in the audio files, that you get to 76 DBA where the child is sitting. So you just position the computer and the space chair and put the sound level meter at the child's head. And there, you know, vary your volume control to get to that. Always administration at the same intensity level.
Carrie: [00:25:49] Okay. And I guess, um, another question would be. Uh, what are some of the challenges that you've kind of heard from people out in the field, like giving the test or, um, follow up with it?
Don: [00:26:06] Great, great. And I keep asking for more and more feedback. And I have an email where you can send me questions not just to the college or the hospital. Um, but the real takeaway is I have had good reports on the images. They absolutely are beautiful illustrations. The, uh, illustrator, um, is in China and didn't speak English, so it was quite interesting to giving her feedback about the various images I took into consideration DEI, diversity, equity and inclusion. That there are various individuals of color. Uh, and there are really pictures that I think when I'm going buck, buck, buck for a chicken, they'll know that's the picture of a chicken and they'll hopefully understand my bok bok bok is a chicken. So I have good feedback of the images. I would say I purposely, um, because of, uh, issues of developing, uh, test design. It is color coded on the right side of each image. So you'd be able to flip to what other whatever subtest you need to go to. It doesn't have tabs, but it's color coded, which turns out to be very helpful. I would say that the one thing that does probably take the most kind of practice is making sure on your computer, you can easily navigate to audio files, the listing of the subtests, and some of the subtests to a practice items.
Don: [00:27:37] So it's really a matter of getting to be able to navigate. And this almost 70 year old, if I'm able to navigate some of the audio files, I know everyone else can. But the real takeaway is there's a little kind of I use the word kind of, uh, kind of quirkiness until you really are great with your finger getting to the right audio file. But the flipping, the scoring in general has been well received by folks out there. And literally, with the exception of this, is almost humorous from a speech pathology standpoint. I now know there are no skunks in Australia. There is a story about a skunk, but I like to think everyone will identify that black animal with a white stripe is a skunk, and you do need to take into consideration. All of my field testing was on English speaking kids, including kids in Israel, as well as, um, you know, I had a lot of kids who are bilingual Spanish speakers in Texas, but English was a language they could understand or it wouldn't be appropriate. But when you do things like the Ling sounds, my English, not New York accent, but I am from New York.
Don: [00:28:50] My English of the production of vowels will be a different production than you might find in different parts of the world, so I'm alerted to the skunks and that my vowels don't quite sound like all the vowels in Australia. Um, and we aren't yet figuring out the exact solution, but it might be that we might be able to rerecord with other speakers. You know, long term. It'd be great that this was in Spanish, great if it was in Mandarin. But, um, I'm not going to live long enough to do all that, I don't think. But we certainly could do a Ling subtest with a rerecording. Um, but, you know, geographic, uh, accents are kind of hard to conquer throughout the whole world. But it was very interesting. I didn't know that in England, they really don't have that many railroad crossings like we have in the US. But the good news is the picture of the railroad crossing doesn't influence them getting the right answer. When the story talked about a car stopping at the train intersection. So you learn a little things culturally to be sensitive to.
Carrie: [00:30:03] Yeah, I'm sure that was a huge challenge when you're kind of basically doing an international like study, you know, data collection and the pilot of the test, and then you find all these little nuances that happen in different countries.
Don: [00:30:20] Yeah. And actually one of my favorite was in field testing. We had a few questions that showed emojis. Kids are so into emojis. But to be on the safe side, because I would point out that's a happy face. And that was a sad face. And that's an angry face. I have labeled each of the emojis with the term, so there's no confusion about frightened versus, you know, sick, you know, a green face emoji with someone who is sick. So that was interesting. And because of generational issues, I even needed to label the grandfather and the grandmother, keeping in mind they're not always called grandfather grandmother. But you know, a lot of people have pretty young looking grandfathers. I didn't want that to be confused with a youthful parent versus a grandparent in one of the images that they're identifying. So I learned a lot about just things that sometimes you never would think about because of the feedback from the kids who would look quizzically at this image going, I'm not sure which emoji you're talking about. So things have been updated before it went into the easel.
Carrie: [00:31:29] Okay. Yeah, just kind of going back to a question that I should have asked you at the beginning, for how long did it take you to do all of this? Because that is like a huge undertaking. And I know you've been talking about it for several years now, and it's been stirring in your brain for longer.
Don: [00:31:49] Well, it's funny because when it did come out, my favorite image that was reposted by Karen Anderson and her website was, it's finally here. And a lot of people go, yeah, it's finally here. Um, the actual assembling of the images, which, you know, took some time from our illustrator and, uh, uh, China. It was right before the pandemic and a sabbatical that I was getting all the images for the whole test. So that was probably a six month time period of approving the hierarchy of the images. The field testing was on another sabbatical, and I almost was trapped in Australia because it was literally the spring break that the pandemic came to us. And I guess I could have stayed in Australia for months, but I got home on the last plane before it would have been quarantined, but from me. Tired at the pandemic last two Decembers ago, I was in Seattle with Robert O'Brien, and literally the transfer of the images, the recordings that were done at a hospital setting in a recording studio. It came out between December of 22, and then we were meeting and that following summer that it turned into this easel with the audio file. So the ending went faster than the preliminary. But I've been musing about hierarchy of listening function probably my whole whole career. And I've always loved this TAC but I knew we needed an update, and it's an update. And some in my mind to say the least. With all due respect to the TAC developers and Karen Anderson, who is one of the greatest cheerleaders going, Don, you got to do this TAF and other people saying you were talking about standardizing the TAC, where's yours? And it was a multi year process slowed down by the pandemic.
Carrie: [00:33:56] Well, now it's in full form. So that's the exciting part of it. And, uh, people can get it too. Is there anything that I forgot or didn't ask you that you think listeners need to know about the, um, Test of Auditory Functioning?
Don: [00:34:14] Sure. I guess the two is. And this is not me being a salesman, other than I want people to benefit that if you are a member of EAA, you can go to the EAA website. And they have a recorded webinar that I did, I believe, in October. Uh, no, actually it was springtime. Um, I have a webinar from March and you can down or you can sign up and watch the webinar. And that was, uh, March of this year. And essentially, if you're a member of EAA, there's a 10% discount for the rest of the year to order it. And note I believe the code, but please check with the EAA folks. It was EAA 2024, uh, if you're a member. Similarly, with AG Bell, there's a 10% discount on all of BlueTree's material, including the TAF with AG Bell 2024. So that could be very helpful. Um, and I would also say if you're uncertain, you can get the links for the YouTube video and see the easel in action. It's a great picture of my friend doing every subtest, but, uh, the best site would probably be BlueTree publishing.com. I always embarrass because I don't always say that correctly, but I'm almost sure that's correct. Um, it's, uh, Blue Tree, one word publishing, and they're based in the state of Washington, so I'd say those would be helpful resources. And again, don't be afraid about the calibration. Uh, you can download sound level meters, for example, from NIOSH for free. And, uh, you know, I welcome questions and I also welcome feedback. In fact, I just was talking with one of Carrie’'s very esteemed colleagues in educational audiology, and she said she, you know, was having a little trouble with getting the audio files.
Don: [00:36:09] And I think that's nothing reflecting her. I have trouble, and I have pretty good experience with the audio files. But once you're once you're flying with the delivery and you're in the right subtest, which is guided by the manual, um, you definitely can do this in a fairly short period of time. And I'd say the last item, um, our mutual friend Carol Flexer gave me a wonderful review, so please feel free to read that. But I think she was being critical. And she said the idea that this really has been long awaited to meet a need. But quite frankly, um, I think it's one of those tests that I hope people value and will be important in their clinical practice. And what better to actually have someone who actually is still seeing those kids in that age range? Um, and, you know, I'm obviously very proud of the work it took, but I'm more proud that more colleagues who might not have learned much about auditory development now have a measure and can really, uh, have a dialogue. I would want to also mention that the Hearing First organization is doing wonderful, wonderful LSL and audiology webinars and courses. And I think through the middle of August, I'm pretty sure I have that right. You can sign up for a four week seminar I'm doing for hearing first about assessment and auditory development. And not just that you sign up for my course, but tons of incredible pediatric audiology offerings as well as LSL training. Uh, so Hearing First would be another resource to be aware of.
Carrie: [00:37:54] Okay. And what I can do and the show notes is I can link um, the EAA website for the webinar and AG Bell as well as Hearing First, um, and then I if you want, I can put your email in there, um, that you want people to get Ahold of you if they have any questions or feedback. Um, we can definitely link all of that up in the show notes.
Don: [00:38:17] And the manual and the score sheet and script are all on the USB. But in the meantime, I'll also provide you with the list of, uh, Ella and her YouTube, because essentially one through 19 are in different segments. Um, and I think although they're very brief segments, you really will get a sample of the sound as well as the easel and that, uh, how hard she worked to go from 1 to 19 in her dining room.
Carrie: [00:38:51] Oh, good. Well, I am so glad that we had the opportunity today. To get together on this podcast and really dive a little bit deeper into the Test of Auditory Functioning and how it can be used for, you know, a variety of different kids, um, from just the early listeners to maybe, um, late listeners who are going to be considering getting cochlear implants or hearing aids and just to kind of figure out, hey, what are some good IEP goals or therapy goals that we want our kids who are deaf and hard of hearing to get to next. And this is a great tool to, um, figure that out and benchmark and then come back to to see where the progress has gone. So thank you, Dr. Don, for doing if I.
Don: [00:39:35] Could, just as you're talking, I've thought of one other thing. From a population standpoint, children with every possible technology were part of the field testing, including two implants, two hearing aids, bimodal soft band kids, a fair number of kids with microtia and atresia that were using soft bands. And I would make the note that I did my dissertation research at a school for the deaf in Florida. And essentially, sometimes people are shocked to wow, you went to a place that there's a lot of signing. I look forward to people acknowledging that some of those children at schools for the deaf, which always will have a role, are also kids who may be getting cochlear implants and those kids or just even wearing some technology. Not all that. Those kids also have auditory potential. And essentially the idea of an auditory verbal therapist reaching out to our colleagues at schools for the deaf may sound surprising, but it's with great sincerity every technology. If you're totally not auditory, this would not make much sense. But we do have kids that people just need direction to demonstrate. They can hear a male versus a female voice. They can do a high versus a low, and where they are, they can move forward. And that's really how I look at every child. We all have our stars and I'm always proud. But sometimes those more involved kids who make the small gains might really be the ones we should take the greatest joy in. And I made that quite sincerely about all children with various degrees of hearing loss.
Carrie: [00:41:18] Yeah, yeah. No, that's a great point to bring up that it really can be used for, for all kids. And it gives us a benchmark for moving forward, um, in auditory development. So sorry for.
Don: [00:41:30] That late late Add.
Carrie: [00:41:32] Yeah that is great. Thank you. But um, again, it is always great to connect with you and find out what is happening. And I really appreciate your time today on the EmpowEAR Audiology podcast.
Don: [00:41:46] Thank you. Appreciate it.
Announcer: [00:41:48] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 67: empowEAR Audiology - Kellina Powell
Announcer: [00:00:00] Welcome to episode 67 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:13] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. I just want to say welcome to Kellina Powell, who is known as the deaf Queen boss. Kellina is a young entrepreneur who loves to help people with their personal growth and educate others about the deaf community. At the age of four, she lost her hearing in both ears. She did not let anything stop her from what she wanted to accomplish. She has received her psychology degree from York University and her Post Graduate Certificate in Mental Health and Addiction. She is also an entrepreneur, starting her online life coaching business, and she is the author of Everyday I Am Just Deaf. Welcome Kellina to the podcast. It is such a pleasure to have you.
Kellina: [00:01:28] Thank you for having me today. Thank you for the lovely introduction.
Carrie: [00:01:31] Yes, well, I know that we kind of connected through LinkedIn, and I am just really excited about this conversation today and to learn more about you. And I can't wait for our listeners to learn more about you as well.
Kellina: [00:01:48] Thank you. I'm excited.
Carrie: [00:01:50] Well, I know we're going to talk a lot about the book, and I want to ask you more about your coaching business, too, but would you mind just giving everybody an overview of your hearing journey and how that started and any other feedback you want to give about that?
Kellina: [00:02:09] Yeah, honestly, I actually became deaf at the age of four. I was not born deaf. So they were things shift for me at a young woman had a baby. So I, a young girl, and I actually became deaf due to an infection due to the daycare not following the infection for the eardrop, unfortunately. So I did became deaf within that same day. So when I went home I was watching TV. My mom tapped me on my shoulder and that's when I realized that I couldn't hear my mom. My mom freaked out. She called my family doctor, actually, before she called my family doctor, she called my grandma, who was the nurse at the time, thankfully, whoa I wouldn't know what I'd be without. My grandma and my grandma knew instantly that I was deaf. She knew. And so over time when I got my hearing loss, I just struggled a lot with, um, being like having mental health in terms of anxiety, nervousness, confusion. Actually, that was a big thing I learned when I was growing up, especially going to a deaf school and a hearing school. And so my family really wanted me to learn how to communicate in two different hearing communities, to let me know who I am as a person. Especially, especially knowing that knowing my familyis deaf. So it was very hard, especially growing up, going into middle school and high school and learning who I am as a person, because I ended up going to the deaf school after grade three, so I actually ended up going to school full time. So it was a very hard, a little bit of struggle, but it was definitely worth it to help me shape who I am today. And, you know, now going to University, it was really great. Um, but yeah, so that's pretty much about me for now. That's the backstory, but we'll get into the rest of the story.
Carrie: [00:03:52] Oh, wow. Wow. Just hearing a little bit of your backstory, um, we definitely have some, some similar connections in, uh, certain ways. So just a little feedback. I, um, was born deaf, but I, they didn't find out who I was four, so that's when I was first identified and fit with hearing aids too. So I can relate, um, about going through, um, a more mainstream school and middle school and high school and some of the challenges that go along with that.
Kellina: [00:04:26] Yeah, yeah.
Carrie: [00:04:29] So as, um, did any of your experiences as an individual who is deaf or hard of hearing help you decide what you wanted to do now in life? And can you share a little bit about your job?
Kellina: [00:04:44] Yeah. For sure. So, um, so what happened was like now growing up, graduating from university and going to college, I did come across a friend of mine who is hard of hearing person, and we were talking about how there is a lot of lack of awareness about the deaf community and how there's not enough professionals in the mental health space field. And that's when I realized that, oh my God, it's so true. Because when I was in high school, I did look up for deaf or hard of hearing therapist for to help me with my anxiety, and I couldn't find nothing in my. For those who probably just wondering, I'm from Canada Toronto, so it's very hard to find, um, deaf and hard of hearing therapists in Canada. So what happened was I realized that I wanted to do something to make a difference in the deaf community walls and let them know that their voice can be heard, especially if those who are struggling with their mental health. And so that's what impacts me to really start my coaching business, and even working as a social worker as well. And that's because I wanted to make an impact on other people and really help those who need a voice and actually help them to get the access and the tools that they need.
Carrie: [00:06:02] Wow. I love how you kind of took your own experiences and were able to kind of further your education, but also help others too. And I would agree with you that there are not enough, um, professionals who are deaf and hard of hearing in the mental health space, whether it's social work or counseling, psychology, coaching, there's just not very many people. And do you feel like your experiences and going into this field has what's the impact that it has on your clients or the patients that you get to see?
Kellina: [00:06:45] Um, so I made a huge impact. And a lot of people I came across, um, I learned a lot more about myself, actually, while I'm doing the job. Right? Because sometimes everybody, every client, every patient you meet with are totally different. And every single one person I've ever worked with, they all think to me, you know, Kellina, you're very open and you are very honest. And you give me a voice. I always ask different question for everybody and let them know, like, okay, well if you can do this, how can we do this? How can we get a solution out of the problem? And that's something I love doing, is solving problems with a lot of the people I work with. And so that's what made me impactful on people to make them realize that their problem can be solved.
Carrie: [00:07:29] Yes. And I know we're going to get a little bit into your coaching in a few minutes. But before we do that, I do want to ask you a couple of things about your book, which I am so excited to have in front of me today, and it is titled Every Day I am just Deaf. So can you just share a little bit about your journey of becoming a writer and what inspired you to write?
Kellina: [00:07:58] Um, yeah. Oh, my God, that story is very funny. A lot of people. So what inspired me to write my book is basically, I realized, not growing up once again, that every time I pick a book, it's not by a deaf author. It's very hard to find that. And I realized that there are not enough books for teenagers or those who are young pre-teen who can relate to their story. So that's why I said no, let me write a book for those next generation, to let them know that their voice can be heard. If I can do it, you can do it as well. There's no way that you can't do it. That's because you are deaf and that's not. And because for me, I never had a role model, I never did. When I grow up, it was very hard. Like, for example, on TV Hollywood, there's nothing, you know, just recently, now they just started having deaf actors, deaf producers. They just started that slowly. It didn't happen when I was growing up, and I wanted that to change so much. And how I start writing my book was actually due to Covid. I was like, what? Yeah, so I actually wrote my book within three months because of Covid. I was very bored. I had to work from home, I quit a few jobs and it was just a lot of transition I have to do because of Covid and just because of the mask. So it was very hard for me to communicate while I was working. So I ended up having to work from home. And so my book took me three months to write because again, I was bored. In Covid, you can't go anywhere. And, um, I find a lot of, uh, resources through, uh, friends. Close friends. They refer me to a lot of editors, um, graphic designer, which is amazing. And. Yeah, and that's really how I started my book.
Carrie: [00:09:44] Wow. Yeah. I think a lot of, a lot of great ideas did start during Covid, even though it was a lot of negativity in it. There's like some positive things that came out of it.
Kellina: [00:09:57] Right, exactly. Yeah. So, um.
Carrie: [00:10:01] So looking at your book, uh, how did you decide to really come the format of your book?
Kellina: [00:10:09] So I always love reading poetry book. That's number one. I always love reading it. I could not read a chapter book. Believe me when I tell everybody that, like, people like, really? And I said I cannot read a chapter book, I just cannot. So what I said was, what is it? I want my readers to get out of this book. That's the first thing I thought right? Then I realized that I wanted my readers to understand what I went through, to let them let them know that they're not alone. So I said, hmm, maybe I can make it short and make it a poetry just because I love poems and make it like a poem. And then I honestly type it in on Google, um, Google Docs and I just type and I like, you know, I think this is it. I think this is my book. And I did have a lot of doubt because I was like, oh my God, who's gonna buy my book? This book going to look good. I was so nervous. Um, honestly, I was super nervous because I didn't know what to expect. And the editor end up reading the book and she said, this book is amazing. I'm like, it is? I think she and she said yes. So that's how I had that idea.
Carrie: [00:11:22] I love it because it is. It is such a great collection of different poems, like you said. But there's you can see, you know, some of your struggles in the poems, but then you also have a great balance of like building your self esteem and empowerment and resilience built into the book as well.
Kellina: [00:11:49] Yeah. Yes, yes.
Carrie: [00:11:52] So do you have, like a favorite, uh, part or a poem within the book? I know I'm putting you on the spot.
Kellina: [00:12:01] It's all good. Um, I would say the poem was one again. Um, so for everybody, there's so many pages in my book. Um, it was a poem about. I was thanking my family and friends for allowing me to be myself without having to second guess me.
Carrie: [00:12:19] Oh, I love that. So we all have our own journey and no matter what it is but and it's great to have that acceptance of who you are no matter what to you.
Kellina: [00:12:30] Exactly.
Carrie: [00:12:31] Yeah. And then obviously all of your personal experiences really influenced the writing process and the themes of the book. Just kind of the switch a little bit. In your opinion, what are some of the common misconceptions about deaf and hard of hearing individuals, and how does that book challenge those stereotypes?
Kellina: [00:12:56] For sure. So then the one data type that a lot of deaf and hard of hearing get is that we cannot achieve a lot of things in life. For example, we can't get a job right, and a lot of people think that they can't work. And to a lot of times people think that every deaf person knows ASL, where some of us don't know. Right. And so I feel like a lot of people assume that they cannot communicate with a deaf or hard of hearing individual, and that if that comes to me and they just look at my face and I'm like, hi, I can help you. And so they get confused when they see my hearing aids. And so a lot of times people don't know how to approach that. And again, it's not their fault. Right? There's a lot of lack of education about the deaf community and a lot of lack of communication like what it is. So yeah. And remember you have a second question. Remember the second question was kind of two question.
Carrie: [00:13:55] Yeah. And then um, you know, how does your book challenge those stereotypes then.
Kellina: [00:14:02] So it was a challenge, honestly, to writing a book as a poem, because I did not want the hearing community to feel like we are attacking them. But we're not right. We want to educate them and say, hey, this is what we go through. And it is true, right? And so I remember my editor saying, oh, there's something that you shouldn't say because some people may get offended. And I said, no, it's not offended. It's it's about education. And it's very important because a lot of deaf people I know go through the same thing, and it's not fair. Why should we shut a mouth so that other person feel comfortable, which is not fair. And so that's a little bit of a challenge when I write my book, because I didn't want it to be in a bad negative way for the hearing person who was reading the book. And I don't want them to think of it negative, but I do want them to know that it can happen to you as well. You could wake up tomorrow deaf too, or a broken arm or anything. Anything can happen. You're 1% away from being disabled as well. Mhm. Mhm.
Carrie: [00:15:04] Yeah. And I think one of the things someone said to me one time is you when you've met one deaf or hard of hearing person, you've met one deaf or hard of hearing person because like you just said, we're everybody is a little bit different. And that's what I really like about your book because you, you do challenge, I think the audience or the readers to kind of be in the shoes, but you have a beautiful way of showing it that, uh, that we are all different, even though we all have a commonality of being deaf or hard of hearing to.
Kellina: [00:15:44] Exactly, exactly. And that's really what I was trying to come across. I did not want people to feel like, okay, only, you know, it's also your truth and anybody else can feel that way as well.
Carrie: [00:15:56] Yes. So I have to ask you, how did you. How did you get your name, Deaf Queen boss?
Kellina: [00:16:05] That's. I get that question a lot. Okay? I get that question a lot. I'm sorry that you ordered that deaf queen boss, but how do you come up with that name? So what I did was, first thing, I just make sure I went on Google type in to make sure that no one had my name. Okay, so I did type in that queen and I actually had a piece of paper beside me also, and I had my little sister with me too. To me, her coming up with a nickname. So my sister wrote down, oh, that queen something, right? But I knew I wanted something in there with the Queen and deaf. I wanted those two words so much. And so we found one person that had, um, deaf, fdeaf queen or something. And then so I'm like, okay, I can't copy that name. And so my sister said, okay, let's change it up to Boss Queen. So I said, okay, well, I don't know. I don't consider myself a boss, but my doctor said, you are because I'm the oldest in my family. So. Yeah. And so I was playing with the words, playing with the names like content consistently for like two hours. And I'm like, I love the Deaf Queen Boss. And I love that. And I stick with it. And I'm not changing no more names because it was two hours. I'm like, yes.
Carrie: [00:17:18] I love it because, you know, it just fits and and the cover of your book and then it gives you that name in the community too. One thing, one other thing about, um, your book, before we kind of move on to maybe a little bit about coaching too, but how do you envision, like, the impact of your book within the deaf and hard of hearing community and then even within the hearing community, what kind of conversation do you hope it might spark?
Kellina: [00:17:52] Um, my hope is really just to inspire people to understand that no matter where you come from, just one, two, that you matter what you have. And number three, it doesn't matter what level you are in life, that you cannot achieve it. And while I wanted to impact, that's the most important thing is the impact. And I know that spark would give a lot of people to really understand. Like, wow, I never read a book by a deaf author. 90% of people I communicate with who I'm hearing, they tell me they're like, you know, you're the first that I've read. I'm like, really? And so that's when I realized that I knew my book was going to spark the hearing community because they never read a book by a deaf author. And a lot of them never interact with the deaf, hard of hearing person. So it's very interesting for the hearing community to see that and be like, oh, wow. So that is what my impact I really, really want my book to have.
Carrie: [00:18:48] Well, I think it definitely will. And I do love that you've targeted kind of I feel like, you know, a teenager or a young adult or an adult could pick this up and, and really gain a lot from it. As an educational audiology audiologist, I feel like there's definitely, um, more and more books for the younger part, like children's books that are coming out, which is awesome because they have that representation in books. But like you said, you know, the adult population or the teen population, there's not a whole lot out there, especially by, like you said, a deaf or hard of hearing author. So thanks to Covid that you got inspired.
Kellina: [00:19:39] Yeah, thanks to Covid. That's the one. Good thing about Covid. Everyone.
Carrie: [00:19:42] Well Kellina I got her book published in three months, which is like a record time for a book, I'm sure. So, but before we wrap up, I also wanted to ask you a little bit about your coaching business, because, again, that is something else that we have in common. I, um, just obtained my coaching certification, and I know you have a coaching business called Kellina Empowerment Incorporated. So can you share a little bit about your journey to becoming a life coach?
Kellina: [00:20:16] Yeah, definitely. So like I said before, everyone, I just spoke about my mental health. So I realized that I wanted to make a change. And so how I started was actually it was because of one of my deaf professors. So I had no idea he was deaf, to be honest. So what happened was he was teaching a lecture and he took one second. I have to change my hearing aid. So I paused for a second myself. I'm like, wait, did you just change your hearing aid in front of the whole lecture? And he and I was like, oh my God, he's deaf. Oh my God, I was so excited. And I honestly spoke to him. And at the end of class, I'm like, how you have the confidence. And we had a really great conversation about confidence and mental health. And he asked me, what did you want to do? And I said, honestly, sir, I wanted to impact people. I want to help the deaf community to get them stuff out there more, just like the way you and I are. And he said, why don't you become a coach or something that in the mental health space. So I said, okay, maybe I'm thinking about it.
Kellina: [00:21:21] And luckily a couple of months later, I met. I met my mentor and she recommended me to be a coach. And I said, okay, this is the time for me to do coaching now. So then I actually went back to school once I graduated from psychology degree to do mental health and addiction diploma or certificate. And so I said, you know what? Let me just go ahead and do it with a six month program. And I did it. And then I started it online. I started using my social media platform to market myself. I had no expectation, and a lot of people realized like, oh my God, you're a coach. Oh my God, you're so good. And I got a lot of referrals, referrals, referrals, like crazy. And I said, oh my God. And so I was very excited. Um, yeah. It was a struggle, especially in the beginning, because you don't know what to do because I was confused. And but I have a great network when I connect with a lot of people, ask them for their advice and how do they market themselves bigger? It was very cool and interesting journey.
Carrie: [00:22:21] Well, that is exciting and I love how you had two important people in your life who kind of directed you and you listened. So you then listen to your heart and you were able to do, um, something that would pass it or pay it forward to others, too. And that mental health space for coaching. I know coaching can be like a wide range of, um, areas too. For you What is your target client base then?
Kellina: [00:22:53] For sure. So I have multiple things in the business side for those who are like, okay, what does Kellina do? So I do one on one coaching for young adults with disability and without disability. So I work with clients from age 15 to 35 years old and had to do a workshop for organization, and I do consulting as well to help others to understand themselves. Um, I do work with organizations in terms of with my coaching. So I do budget with organization. So that's what my company is all about.
Carrie: [00:23:25] Okay and how long do you typically work with a client when you're working with them.
Kellina: [00:23:31] So it all depends on the clients, right. Every clients are different. So I do have two different packets. So I do have a standard package which is the very beginner package for someone who new. So that is the three month program. And then I do have a six month program for those who are interested. Couselor before, who knows what they want out of their goals, especially out of the house. So that is my um. Yeah, that's my 6 month program. So.
Carrie: [00:23:58] Okay. Do you have maybe just a little success story or anything that you can share from your coaching practice that really resonates with you?
Kellina: [00:24:11] Yeah, for sure. Definitely. I actually did coach, um, she was actually, um, a friend of mine who wanted to coach by me, and she did had, uh, struggled with her anxiety. And so she didn't know what to do in terms of how to network and go up to people. And she was afraid of saying no to people. She thought the expert thing. And so what I did was a three month program. We met. We met once a week, and we stood down once a week, and we go through all the things that she struggled through. Who does she have a hard time saying no to? We break it down. And so we practiced with role play. So our role play and she will role play. So that way she has an idea what it is and what may happen next. Because some people were indicted, they have to know what's going to happen next. Right. And they do need to practice. So I did that with her, and I did provide a worksheet for her to work on while she's at home. So this is where she had homework to do. Well, not really homework, but it's like a practice. And it's like activities where I break down, you know, who do I who did I say no to today? Who did I say yes to today? So that way she can visually see how many yeses she's saying in one day for her to realize, oh my God, this is too many. Yes. And I remember she realized and she, she came to me to follow me. She's like, oh my God, there's so many yesterday. This is so bad. Kellina and I just okay, it's practice, right? You learn, you have to register. And she thought about work and she was like, oh my God, this is this is amazing. Because for three months she realized and understood and yeah. And that's one of the story.
Carrie: [00:25:50] That's great. So the teach somebody what is the best yes for you right.
Kellina: [00:25:56] Yes.
Carrie: [00:25:58] We don't have to say yes to everything. But what is your best Yes. Right. What advice do you have for individuals who might be seeking out coaching? I mean, who is coaching for.
Kellina: [00:26:10] Um, coaching could be for anybody. It's really depend what the person needs help with. I always tell everybody, before you get a coach, please sit down with them and ask them questions. What are their success stories? How many clients succeed in your program because you do want to make sure that you're not wasting your money? That's the last thing I want people to do when they're working with me. They feel like we did not accomplish the goal. That's the worst thing I want. I know there are some coach who are overly priced and some people are like, oh, but they're the best. They said, it doesn't matter. Price should not be a guide. Price should not define someone's success. Right. And I also tell people there may be better people who may be affordable. And you realize that you get more than the expensive coach. And you realize that happened to me before I remember I hired, I think it was the Instagram coach and one of them wasn't. It wasn't good, but it was okay. And then I ended up having another business coach, and she was amazing. And she was affordable because I was nervous because I thought, oh no, it's affordable. Am I going to get a different result from a different coach? So always keep your options open. Talk to at least two coach when you're deciding, because that way you have better options and understand where can you go with it and what is your take that most likely will look like?
Carrie: [00:27:33] Yeah, that that's great advice to kind of check out a couple of people and meet with them and see if your, um, your connection's good too, right? Exactly, exactly. Yeah. So Kellina, this was such an amazing conversation between, like, meeting you. Um, I know we've met, like, through LinkedIn, but I can tell just from our meeting today that we would just click and I wish we were in real life in person together as well. Is there anything, as we wrap up that I missed or I didn't ask you?
Kellina: [00:28:12] Um, I think you asked me a lot of questions. However, you maybe did not ask me what is one piece of advice I would leave for someone? So my advice I would love to give to everybody who are listening is you have to remember like it's your life and your decision. Whatever you do, it's on you, not somebody else. You have to live your life like there's no tomorrow because tomorrow is not a promise. You never know when God's going to knock on the door for you to go home.
Carrie: [00:28:41] I love that live for today, right?
Kellina: [00:28:44] Exactly. Yes.
Carrie: [00:28:46] Ahh. Kellina if there if any of our listeners, they want to find you if they want to order your book, which I would highly recommend all of my listeners to definitely order the book because it is such a great quick read, but it has so many high points and advice in it that I think anyone should, whether you have a hearing loss or not, should pick up. Um, and gather more information from from the book. So let me know how people can get a hold of you.
Kellina: [00:29:24] Yeah, definitely. I really can get a hold of me on Instagram, which is Deaf Queen Boss. And second, you can find my book on Amazon. You can just type in Kellina Powell and my book would be right there for you. And lastly, if you want to check out my website it is Kellina empowerment. Com.
Carrie: [00:29:40] Okay. Well Kellina, I just want to say thank you for being a guest and the empowEAR Audiology podcast. It was such a pleasure to have this conversation today. And my listener, thank you again for listening to EmpowEAR Audiology. I really appreciate all of you, uh, giving me a five star review if you can, and sharing this podcast with anyone else that may be interested. So thanks again, Kellina.
Kellina: [00:30:13] Thank you for having me.
Announcer: [00:30:14] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 67 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:13] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. I just want to say welcome to Kellina Powell, who is known as the deaf Queen boss. Kellina is a young entrepreneur who loves to help people with their personal growth and educate others about the deaf community. At the age of four, she lost her hearing in both ears. She did not let anything stop her from what she wanted to accomplish. She has received her psychology degree from York University and her Post Graduate Certificate in Mental Health and Addiction. She is also an entrepreneur, starting her online life coaching business, and she is the author of Everyday I Am Just Deaf. Welcome Kellina to the podcast. It is such a pleasure to have you.
Kellina: [00:01:28] Thank you for having me today. Thank you for the lovely introduction.
Carrie: [00:01:31] Yes, well, I know that we kind of connected through LinkedIn, and I am just really excited about this conversation today and to learn more about you. And I can't wait for our listeners to learn more about you as well.
Kellina: [00:01:48] Thank you. I'm excited.
Carrie: [00:01:50] Well, I know we're going to talk a lot about the book, and I want to ask you more about your coaching business, too, but would you mind just giving everybody an overview of your hearing journey and how that started and any other feedback you want to give about that?
Kellina: [00:02:09] Yeah, honestly, I actually became deaf at the age of four. I was not born deaf. So they were things shift for me at a young woman had a baby. So I, a young girl, and I actually became deaf due to an infection due to the daycare not following the infection for the eardrop, unfortunately. So I did became deaf within that same day. So when I went home I was watching TV. My mom tapped me on my shoulder and that's when I realized that I couldn't hear my mom. My mom freaked out. She called my family doctor, actually, before she called my family doctor, she called my grandma, who was the nurse at the time, thankfully, whoa I wouldn't know what I'd be without. My grandma and my grandma knew instantly that I was deaf. She knew. And so over time when I got my hearing loss, I just struggled a lot with, um, being like having mental health in terms of anxiety, nervousness, confusion. Actually, that was a big thing I learned when I was growing up, especially going to a deaf school and a hearing school. And so my family really wanted me to learn how to communicate in two different hearing communities, to let me know who I am as a person. Especially, especially knowing that knowing my familyis deaf. So it was very hard, especially growing up, going into middle school and high school and learning who I am as a person, because I ended up going to the deaf school after grade three, so I actually ended up going to school full time. So it was a very hard, a little bit of struggle, but it was definitely worth it to help me shape who I am today. And, you know, now going to University, it was really great. Um, but yeah, so that's pretty much about me for now. That's the backstory, but we'll get into the rest of the story.
Carrie: [00:03:52] Oh, wow. Wow. Just hearing a little bit of your backstory, um, we definitely have some, some similar connections in, uh, certain ways. So just a little feedback. I, um, was born deaf, but I, they didn't find out who I was four, so that's when I was first identified and fit with hearing aids too. So I can relate, um, about going through, um, a more mainstream school and middle school and high school and some of the challenges that go along with that.
Kellina: [00:04:26] Yeah, yeah.
Carrie: [00:04:29] So as, um, did any of your experiences as an individual who is deaf or hard of hearing help you decide what you wanted to do now in life? And can you share a little bit about your job?
Kellina: [00:04:44] Yeah. For sure. So, um, so what happened was like now growing up, graduating from university and going to college, I did come across a friend of mine who is hard of hearing person, and we were talking about how there is a lot of lack of awareness about the deaf community and how there's not enough professionals in the mental health space field. And that's when I realized that, oh my God, it's so true. Because when I was in high school, I did look up for deaf or hard of hearing therapist for to help me with my anxiety, and I couldn't find nothing in my. For those who probably just wondering, I'm from Canada Toronto, so it's very hard to find, um, deaf and hard of hearing therapists in Canada. So what happened was I realized that I wanted to do something to make a difference in the deaf community walls and let them know that their voice can be heard, especially if those who are struggling with their mental health. And so that's what impacts me to really start my coaching business, and even working as a social worker as well. And that's because I wanted to make an impact on other people and really help those who need a voice and actually help them to get the access and the tools that they need.
Carrie: [00:06:02] Wow. I love how you kind of took your own experiences and were able to kind of further your education, but also help others too. And I would agree with you that there are not enough, um, professionals who are deaf and hard of hearing in the mental health space, whether it's social work or counseling, psychology, coaching, there's just not very many people. And do you feel like your experiences and going into this field has what's the impact that it has on your clients or the patients that you get to see?
Kellina: [00:06:45] Um, so I made a huge impact. And a lot of people I came across, um, I learned a lot more about myself, actually, while I'm doing the job. Right? Because sometimes everybody, every client, every patient you meet with are totally different. And every single one person I've ever worked with, they all think to me, you know, Kellina, you're very open and you are very honest. And you give me a voice. I always ask different question for everybody and let them know, like, okay, well if you can do this, how can we do this? How can we get a solution out of the problem? And that's something I love doing, is solving problems with a lot of the people I work with. And so that's what made me impactful on people to make them realize that their problem can be solved.
Carrie: [00:07:29] Yes. And I know we're going to get a little bit into your coaching in a few minutes. But before we do that, I do want to ask you a couple of things about your book, which I am so excited to have in front of me today, and it is titled Every Day I am just Deaf. So can you just share a little bit about your journey of becoming a writer and what inspired you to write?
Kellina: [00:07:58] Um, yeah. Oh, my God, that story is very funny. A lot of people. So what inspired me to write my book is basically, I realized, not growing up once again, that every time I pick a book, it's not by a deaf author. It's very hard to find that. And I realized that there are not enough books for teenagers or those who are young pre-teen who can relate to their story. So that's why I said no, let me write a book for those next generation, to let them know that their voice can be heard. If I can do it, you can do it as well. There's no way that you can't do it. That's because you are deaf and that's not. And because for me, I never had a role model, I never did. When I grow up, it was very hard. Like, for example, on TV Hollywood, there's nothing, you know, just recently, now they just started having deaf actors, deaf producers. They just started that slowly. It didn't happen when I was growing up, and I wanted that to change so much. And how I start writing my book was actually due to Covid. I was like, what? Yeah, so I actually wrote my book within three months because of Covid. I was very bored. I had to work from home, I quit a few jobs and it was just a lot of transition I have to do because of Covid and just because of the mask. So it was very hard for me to communicate while I was working. So I ended up having to work from home. And so my book took me three months to write because again, I was bored. In Covid, you can't go anywhere. And, um, I find a lot of, uh, resources through, uh, friends. Close friends. They refer me to a lot of editors, um, graphic designer, which is amazing. And. Yeah, and that's really how I started my book.
Carrie: [00:09:44] Wow. Yeah. I think a lot of, a lot of great ideas did start during Covid, even though it was a lot of negativity in it. There's like some positive things that came out of it.
Kellina: [00:09:57] Right, exactly. Yeah. So, um.
Carrie: [00:10:01] So looking at your book, uh, how did you decide to really come the format of your book?
Kellina: [00:10:09] So I always love reading poetry book. That's number one. I always love reading it. I could not read a chapter book. Believe me when I tell everybody that, like, people like, really? And I said I cannot read a chapter book, I just cannot. So what I said was, what is it? I want my readers to get out of this book. That's the first thing I thought right? Then I realized that I wanted my readers to understand what I went through, to let them let them know that they're not alone. So I said, hmm, maybe I can make it short and make it a poetry just because I love poems and make it like a poem. And then I honestly type it in on Google, um, Google Docs and I just type and I like, you know, I think this is it. I think this is my book. And I did have a lot of doubt because I was like, oh my God, who's gonna buy my book? This book going to look good. I was so nervous. Um, honestly, I was super nervous because I didn't know what to expect. And the editor end up reading the book and she said, this book is amazing. I'm like, it is? I think she and she said yes. So that's how I had that idea.
Carrie: [00:11:22] I love it because it is. It is such a great collection of different poems, like you said. But there's you can see, you know, some of your struggles in the poems, but then you also have a great balance of like building your self esteem and empowerment and resilience built into the book as well.
Kellina: [00:11:49] Yeah. Yes, yes.
Carrie: [00:11:52] So do you have, like a favorite, uh, part or a poem within the book? I know I'm putting you on the spot.
Kellina: [00:12:01] It's all good. Um, I would say the poem was one again. Um, so for everybody, there's so many pages in my book. Um, it was a poem about. I was thanking my family and friends for allowing me to be myself without having to second guess me.
Carrie: [00:12:19] Oh, I love that. So we all have our own journey and no matter what it is but and it's great to have that acceptance of who you are no matter what to you.
Kellina: [00:12:30] Exactly.
Carrie: [00:12:31] Yeah. And then obviously all of your personal experiences really influenced the writing process and the themes of the book. Just kind of the switch a little bit. In your opinion, what are some of the common misconceptions about deaf and hard of hearing individuals, and how does that book challenge those stereotypes?
Kellina: [00:12:56] For sure. So then the one data type that a lot of deaf and hard of hearing get is that we cannot achieve a lot of things in life. For example, we can't get a job right, and a lot of people think that they can't work. And to a lot of times people think that every deaf person knows ASL, where some of us don't know. Right. And so I feel like a lot of people assume that they cannot communicate with a deaf or hard of hearing individual, and that if that comes to me and they just look at my face and I'm like, hi, I can help you. And so they get confused when they see my hearing aids. And so a lot of times people don't know how to approach that. And again, it's not their fault. Right? There's a lot of lack of education about the deaf community and a lot of lack of communication like what it is. So yeah. And remember you have a second question. Remember the second question was kind of two question.
Carrie: [00:13:55] Yeah. And then um, you know, how does your book challenge those stereotypes then.
Kellina: [00:14:02] So it was a challenge, honestly, to writing a book as a poem, because I did not want the hearing community to feel like we are attacking them. But we're not right. We want to educate them and say, hey, this is what we go through. And it is true, right? And so I remember my editor saying, oh, there's something that you shouldn't say because some people may get offended. And I said, no, it's not offended. It's it's about education. And it's very important because a lot of deaf people I know go through the same thing, and it's not fair. Why should we shut a mouth so that other person feel comfortable, which is not fair. And so that's a little bit of a challenge when I write my book, because I didn't want it to be in a bad negative way for the hearing person who was reading the book. And I don't want them to think of it negative, but I do want them to know that it can happen to you as well. You could wake up tomorrow deaf too, or a broken arm or anything. Anything can happen. You're 1% away from being disabled as well. Mhm. Mhm.
Carrie: [00:15:04] Yeah. And I think one of the things someone said to me one time is you when you've met one deaf or hard of hearing person, you've met one deaf or hard of hearing person because like you just said, we're everybody is a little bit different. And that's what I really like about your book because you, you do challenge, I think the audience or the readers to kind of be in the shoes, but you have a beautiful way of showing it that, uh, that we are all different, even though we all have a commonality of being deaf or hard of hearing to.
Kellina: [00:15:44] Exactly, exactly. And that's really what I was trying to come across. I did not want people to feel like, okay, only, you know, it's also your truth and anybody else can feel that way as well.
Carrie: [00:15:56] Yes. So I have to ask you, how did you. How did you get your name, Deaf Queen boss?
Kellina: [00:16:05] That's. I get that question a lot. Okay? I get that question a lot. I'm sorry that you ordered that deaf queen boss, but how do you come up with that name? So what I did was, first thing, I just make sure I went on Google type in to make sure that no one had my name. Okay, so I did type in that queen and I actually had a piece of paper beside me also, and I had my little sister with me too. To me, her coming up with a nickname. So my sister wrote down, oh, that queen something, right? But I knew I wanted something in there with the Queen and deaf. I wanted those two words so much. And so we found one person that had, um, deaf, fdeaf queen or something. And then so I'm like, okay, I can't copy that name. And so my sister said, okay, let's change it up to Boss Queen. So I said, okay, well, I don't know. I don't consider myself a boss, but my doctor said, you are because I'm the oldest in my family. So. Yeah. And so I was playing with the words, playing with the names like content consistently for like two hours. And I'm like, I love the Deaf Queen Boss. And I love that. And I stick with it. And I'm not changing no more names because it was two hours. I'm like, yes.
Carrie: [00:17:18] I love it because, you know, it just fits and and the cover of your book and then it gives you that name in the community too. One thing, one other thing about, um, your book, before we kind of move on to maybe a little bit about coaching too, but how do you envision, like, the impact of your book within the deaf and hard of hearing community and then even within the hearing community, what kind of conversation do you hope it might spark?
Kellina: [00:17:52] Um, my hope is really just to inspire people to understand that no matter where you come from, just one, two, that you matter what you have. And number three, it doesn't matter what level you are in life, that you cannot achieve it. And while I wanted to impact, that's the most important thing is the impact. And I know that spark would give a lot of people to really understand. Like, wow, I never read a book by a deaf author. 90% of people I communicate with who I'm hearing, they tell me they're like, you know, you're the first that I've read. I'm like, really? And so that's when I realized that I knew my book was going to spark the hearing community because they never read a book by a deaf author. And a lot of them never interact with the deaf, hard of hearing person. So it's very interesting for the hearing community to see that and be like, oh, wow. So that is what my impact I really, really want my book to have.
Carrie: [00:18:48] Well, I think it definitely will. And I do love that you've targeted kind of I feel like, you know, a teenager or a young adult or an adult could pick this up and, and really gain a lot from it. As an educational audiology audiologist, I feel like there's definitely, um, more and more books for the younger part, like children's books that are coming out, which is awesome because they have that representation in books. But like you said, you know, the adult population or the teen population, there's not a whole lot out there, especially by, like you said, a deaf or hard of hearing author. So thanks to Covid that you got inspired.
Kellina: [00:19:39] Yeah, thanks to Covid. That's the one. Good thing about Covid. Everyone.
Carrie: [00:19:42] Well Kellina I got her book published in three months, which is like a record time for a book, I'm sure. So, but before we wrap up, I also wanted to ask you a little bit about your coaching business, because, again, that is something else that we have in common. I, um, just obtained my coaching certification, and I know you have a coaching business called Kellina Empowerment Incorporated. So can you share a little bit about your journey to becoming a life coach?
Kellina: [00:20:16] Yeah, definitely. So like I said before, everyone, I just spoke about my mental health. So I realized that I wanted to make a change. And so how I started was actually it was because of one of my deaf professors. So I had no idea he was deaf, to be honest. So what happened was he was teaching a lecture and he took one second. I have to change my hearing aid. So I paused for a second myself. I'm like, wait, did you just change your hearing aid in front of the whole lecture? And he and I was like, oh my God, he's deaf. Oh my God, I was so excited. And I honestly spoke to him. And at the end of class, I'm like, how you have the confidence. And we had a really great conversation about confidence and mental health. And he asked me, what did you want to do? And I said, honestly, sir, I wanted to impact people. I want to help the deaf community to get them stuff out there more, just like the way you and I are. And he said, why don't you become a coach or something that in the mental health space. So I said, okay, maybe I'm thinking about it.
Kellina: [00:21:21] And luckily a couple of months later, I met. I met my mentor and she recommended me to be a coach. And I said, okay, this is the time for me to do coaching now. So then I actually went back to school once I graduated from psychology degree to do mental health and addiction diploma or certificate. And so I said, you know what? Let me just go ahead and do it with a six month program. And I did it. And then I started it online. I started using my social media platform to market myself. I had no expectation, and a lot of people realized like, oh my God, you're a coach. Oh my God, you're so good. And I got a lot of referrals, referrals, referrals, like crazy. And I said, oh my God. And so I was very excited. Um, yeah. It was a struggle, especially in the beginning, because you don't know what to do because I was confused. And but I have a great network when I connect with a lot of people, ask them for their advice and how do they market themselves bigger? It was very cool and interesting journey.
Carrie: [00:22:21] Well, that is exciting and I love how you had two important people in your life who kind of directed you and you listened. So you then listen to your heart and you were able to do, um, something that would pass it or pay it forward to others, too. And that mental health space for coaching. I know coaching can be like a wide range of, um, areas too. For you What is your target client base then?
Kellina: [00:22:53] For sure. So I have multiple things in the business side for those who are like, okay, what does Kellina do? So I do one on one coaching for young adults with disability and without disability. So I work with clients from age 15 to 35 years old and had to do a workshop for organization, and I do consulting as well to help others to understand themselves. Um, I do work with organizations in terms of with my coaching. So I do budget with organization. So that's what my company is all about.
Carrie: [00:23:25] Okay and how long do you typically work with a client when you're working with them.
Kellina: [00:23:31] So it all depends on the clients, right. Every clients are different. So I do have two different packets. So I do have a standard package which is the very beginner package for someone who new. So that is the three month program. And then I do have a six month program for those who are interested. Couselor before, who knows what they want out of their goals, especially out of the house. So that is my um. Yeah, that's my 6 month program. So.
Carrie: [00:23:58] Okay. Do you have maybe just a little success story or anything that you can share from your coaching practice that really resonates with you?
Kellina: [00:24:11] Yeah, for sure. Definitely. I actually did coach, um, she was actually, um, a friend of mine who wanted to coach by me, and she did had, uh, struggled with her anxiety. And so she didn't know what to do in terms of how to network and go up to people. And she was afraid of saying no to people. She thought the expert thing. And so what I did was a three month program. We met. We met once a week, and we stood down once a week, and we go through all the things that she struggled through. Who does she have a hard time saying no to? We break it down. And so we practiced with role play. So our role play and she will role play. So that way she has an idea what it is and what may happen next. Because some people were indicted, they have to know what's going to happen next. Right. And they do need to practice. So I did that with her, and I did provide a worksheet for her to work on while she's at home. So this is where she had homework to do. Well, not really homework, but it's like a practice. And it's like activities where I break down, you know, who do I who did I say no to today? Who did I say yes to today? So that way she can visually see how many yeses she's saying in one day for her to realize, oh my God, this is too many. Yes. And I remember she realized and she, she came to me to follow me. She's like, oh my God, there's so many yesterday. This is so bad. Kellina and I just okay, it's practice, right? You learn, you have to register. And she thought about work and she was like, oh my God, this is this is amazing. Because for three months she realized and understood and yeah. And that's one of the story.
Carrie: [00:25:50] That's great. So the teach somebody what is the best yes for you right.
Kellina: [00:25:56] Yes.
Carrie: [00:25:58] We don't have to say yes to everything. But what is your best Yes. Right. What advice do you have for individuals who might be seeking out coaching? I mean, who is coaching for.
Kellina: [00:26:10] Um, coaching could be for anybody. It's really depend what the person needs help with. I always tell everybody, before you get a coach, please sit down with them and ask them questions. What are their success stories? How many clients succeed in your program because you do want to make sure that you're not wasting your money? That's the last thing I want people to do when they're working with me. They feel like we did not accomplish the goal. That's the worst thing I want. I know there are some coach who are overly priced and some people are like, oh, but they're the best. They said, it doesn't matter. Price should not be a guide. Price should not define someone's success. Right. And I also tell people there may be better people who may be affordable. And you realize that you get more than the expensive coach. And you realize that happened to me before I remember I hired, I think it was the Instagram coach and one of them wasn't. It wasn't good, but it was okay. And then I ended up having another business coach, and she was amazing. And she was affordable because I was nervous because I thought, oh no, it's affordable. Am I going to get a different result from a different coach? So always keep your options open. Talk to at least two coach when you're deciding, because that way you have better options and understand where can you go with it and what is your take that most likely will look like?
Carrie: [00:27:33] Yeah, that that's great advice to kind of check out a couple of people and meet with them and see if your, um, your connection's good too, right? Exactly, exactly. Yeah. So Kellina, this was such an amazing conversation between, like, meeting you. Um, I know we've met, like, through LinkedIn, but I can tell just from our meeting today that we would just click and I wish we were in real life in person together as well. Is there anything, as we wrap up that I missed or I didn't ask you?
Kellina: [00:28:12] Um, I think you asked me a lot of questions. However, you maybe did not ask me what is one piece of advice I would leave for someone? So my advice I would love to give to everybody who are listening is you have to remember like it's your life and your decision. Whatever you do, it's on you, not somebody else. You have to live your life like there's no tomorrow because tomorrow is not a promise. You never know when God's going to knock on the door for you to go home.
Carrie: [00:28:41] I love that live for today, right?
Kellina: [00:28:44] Exactly. Yes.
Carrie: [00:28:46] Ahh. Kellina if there if any of our listeners, they want to find you if they want to order your book, which I would highly recommend all of my listeners to definitely order the book because it is such a great quick read, but it has so many high points and advice in it that I think anyone should, whether you have a hearing loss or not, should pick up. Um, and gather more information from from the book. So let me know how people can get a hold of you.
Kellina: [00:29:24] Yeah, definitely. I really can get a hold of me on Instagram, which is Deaf Queen Boss. And second, you can find my book on Amazon. You can just type in Kellina Powell and my book would be right there for you. And lastly, if you want to check out my website it is Kellina empowerment. Com.
Carrie: [00:29:40] Okay. Well Kellina, I just want to say thank you for being a guest and the empowEAR Audiology podcast. It was such a pleasure to have this conversation today. And my listener, thank you again for listening to EmpowEAR Audiology. I really appreciate all of you, uh, giving me a five star review if you can, and sharing this podcast with anyone else that may be interested. So thanks again, Kellina.
Kellina: [00:30:13] Thank you for having me.
Announcer: [00:30:14] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 66: empowEAR Audiology - Gil Kaminski
Announcer: [00:00:00] Welcome to episode 66 of empowEAR Audiology with Doctor Carrie Spangler.
Carrie: [00:00:13] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, doctor Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome everyone! I have Gil Kaminski, with me today and she is a product management and Clinical Operations leader with over 15 years of experience in healthcare, artificial intelligence and machine learning. She is the co-founder of Humelan, a public benefit corporation committed to helping individuals navigate the complexities of hearing, health and wellness through its person centered approach, community support, and an AI companion app, Humelan provides a comprehensive solution to those experiencing hearing loss. Her career is rooted in technology, research and development and clinical operations, having contributed to various healthcare and medtech organizations including including Laguana Health, DaVita Kidney Care, Wide Med Limited, and the Israel Defense Force Naval Medical Institute. Gil holds an MBA from the Wharton School and a Bachelors of Science and Biomedical Engineering from the Israel Institute of Technology. Gil, welcome to the podcast today.
Gil: [00:01:56] Hi Gary. So happy to be here. Thank you for having me.
Carrie: [00:02:00] Yes, I'm so excited. And I, I'm excited that the fact that we got connected was through LinkedIn and through a common, um, colleague who was part of the Ida Institute for Person Centered Care. So it just kind of interesting how paths cross.
Gil: [00:02:22] Yes, 100%. Yeah.
Carrie: [00:02:24] Yeah. And I wanted to, um, dive really deep into Humelan today and all of that it has to offer. But as we get started, can you just share with our listeners what Humelan is?
Gil: [00:02:39] Yeah, sure. So Humelan is a public benefit corporation, and we're really focusing on supporting people with different hearing levels. And our goal is to really see everybody, um, getting all the information and the support that they need within the space of, of, uh, hearing loss.
Carrie: [00:02:58] Okay. And I know you have a story and an inspiration behind starting here Humelan, can you share a little bit about that too?
Gil: [00:03:07] Yeah, sure. So my, um, really journey with hearing loss started as a child and um, in my case, it's not my own hearing loss, but I as I was growing up, my mother was losing her hearing and really was growing deaf. And she was hearing using hearing aids since I can remember her. And for a while there, they were just kind of this accessory that was around the house on the drawer, you know, in the kitchen. But I can't say that they were really in use as much as one would have expected. And when I think that all changed when I was about 12. Um, she's also an ENT and a surgeon, and when she was doing her fellowship, that's when she really started to use them. She also continued to lose her hearing, so she needed them more and more. But I think really there was a change for her when she met the right clinician, the right audiologist, who really showed her, uh, kind of the the tricks and the best tips on how to really benefit from hearing aids. Um, and then fast forward, she did her fellowship in cochlear implants. Um, and she's a cochlear implant surgeon. And then fast forward, she continued to to lose her hearing, unfortunately, and ended up using cochlear implants herself. And so really, I was growing up kind of experiencing progressive hearing loss progression, really from hearing aids to then. I'm an expert on the FM system. I've used it everywhere you can imagine. Um, and then all the way to, to her first cochlear implant and then her second. And I've also over the years have worked with my mother when I was younger and she was building her clinic, her private clinic, and and so I've also experienced her as a physician.
Gil: [00:04:52] And so it's really all of those experiences that really kind of brought me back. And, and I would say even the very beginning of deciding to learn biomedical engineering and specializing in AI and signal processing, for me, a lot of it had to do with hearing aids and cochlear implants and getting really excited about what that can do. And to me, cochlear implants are kind of like magic because I've seen, you know, that year before you get them and and how that's like and then a month later and how that felt for, for me as a communication partner to my mom. And so for me, that was really kind of like my professional journey to choosing to, to become an engineer. And then fast forward, I was working on all kinds of other different technologies and kidney and sleep medicine and a lot of other stuff. And so for a long, long time really wanted to come back to the to the hearing space. And over the past about 12 months, I felt like, this is this is the right time. Like things are changing. Awareness is, you know, growing over the counter hearing aids are coming out whether we like them or not. They're they're there. And so that's such an interesting change. And then when you see what the World Health Organization is doing today and the Ida Institute and all of those things coming together, I was really, really inspired to go back to hearing to the hearing space and to collaborate with my mom again.
Carrie: [00:06:20] Wow. I love how you've taken just from a young age your personal journey, and really intertwined it with a professional journey that can really empower other people, which is kind of your your vision, which is powerful for Humelan to empower human potential through communication, equity. And I know you have a lot of purposes and objectives or not a lot a several main purposes and objectives for Humelan, which include community knowledge and events. So if it's okay with you, I would love to kind of dive into those three areas and see, um, how you how does Humelan foster these supportive communities. You shared a little bit about your own growing up and and being a support, um, communication partner for your mom, but I would love to hear how this is going to be a support for others.
Gil: [00:07:18] Yeah I know thank you for that question. So I think like for, for us, what was really interesting for me, unlike I think most other people, I didn't realize that having a different hearing evel is, is something that different people look at in different ways. For me, it was so natural growing up with my mom, with hearing aids, and then with cochlear implants, that it was just part of our lives. And I was always, um, really inspired by that technology. But I never thought of it twice. For me, hearing aids is kind of like putting on glasses. And I'm also very fortunate because my mom has so much knowledge about, um, hearing aids, hearing aids and aural rehabilitation. And where do you stand when you're talking to someone who has a different hearing level? And I'm always I'm always used to walking on people's, you know, on one side of everyone. And people sometimes almost find it weird. They're like, why are you moving to my other side? But that's my mom's better side. So that's the side I've always been walking on, and I'm always thinking of where do I sit so the other person can hear me and that I can hear them best? And I think all of those little things, um, when you bring them all together, all that body of knowledge, at some point I realized I'm so fortunate with my mother's hearing loss that she knew so much that she could teach us me and my siblings, my father, everybody in our family.
Gil: [00:08:52] Enough about it that we really have good communication. I mean, we live in different countries. We speak on the phone almost every day, and it's never been the communication aspect. And even in our relationship, it's never been a barrier for us. And. even And I think that that's I realize at some point that's not the norm for everybody, because there's a learning curve that you need to get through, um, to be able to do all those things. And then there's another circle, right, of going out and, um, listening to lectures, for example, or giving lectures and all those other steps and things in your day to day life that you need to do as a person with a different hearing level. And you may not know even that there's knowledge out there and that can support you in that. And so for us, it was really important to put a lot of a lot of different ways to provide that information to people. And you mentioned the communities and different events, and we're building an AI, um, hearing coach that would also be able to help people and enhance what the audiologist is already doing with people. And so all of that is really to provide people the knowledge that they need when they need it in a very personalized way and in different modes of, of, um, models of communication, of information, so that it's easy for people to get what they need out of it.
Gil: [00:10:20] And at the end of the day, the goal is to kind of help you ask what you don't know to ask, because sometimes you don't know, especially with communication. You don't know what you don't know if that makes sense. And so it's so specific to a certain point in life. Like you're you're new to college, you're walking into a classroom. If you don't know that there are certain things that you should be given, you're not going to know how to ask for them. And, you know, an example is. One of the people we were supporting through our coaching recently. That person was new to hearing aids and had no idea that there is microphones that you could use. And for those listening to the podcast who may not know what those are, we can get into that later. But basically, imagine there's a little microphone, um, that the person you're speaking with can use and they talk into that little microphone and that goes directly into your hearing aid. So if you're in a noisy environment, it makes it makes it so much easier to hear them. And. This person. Really, that was a huge help for them. But they would have never, never known to ask for it. And so for us, some of it is just guessing what people are going to need and being able to provide it at the right time.
Carrie: [00:11:40] Yeah, that just in time. Learning is such an important part of the the hearing journey and knowing like what you said to ask for and things like that. Um, one of the things as far as the, the communities go, who should be involved in the communities and know you did mention, um, individuals who are on that hearing journey, but should anyone else also be involved in these communities?
Gil: [00:12:09] Yeah, I certainly think, um, and the way we're building the communities is anybody can open one on our website today. So if you go to Humelan.com, you can just open one or you can join one. The way we're thinking about them is both people who are experiencing, um, hearing loss or have had a different hearing levels for a while, but also people like myself who have a family member who has hearing loss, and maybe they're new to it or they've they've had it for a while, but you need to you want to learn more, or maybe you just want to have a community of people who are experiencing a similar thing. And I think there's just a lot of shared life experiences for both family members and people with hearing loss, and no one else would have had those specific experiences. And I think that's really important. Um, and I also envision at some point having communities for professionals who are responsible at different institutes to make sure that there is accessibility, because I think they must have a lot of questions. And I think people are really, really well intentioned to do the right thing. But there's just so much you need to know around hearing to do the right thing. And I think those communities could be a great place as well for people to go and just ask the questions.
Carrie: [00:13:29] Yeah, what a great way to support so many different people. You also talked about Humelan and creating like a knowledge hub too, that provides a lot of information on hearing, health and wellness. What kind of topics of knowledge would someone be able to find in your knowledge hub?
Gil: [00:13:50] Yeah. Thank you. So we're we're really thinking about what kind of questions someone with hearing loss and their support system might have. And so we started with things that are very, um, very common for people to ask, like, do I have hearing loss? Does my partner have hearing loss? We're having a family dinner and I have a guest who has hearing loss. What do I do? We want to cook together. What what does that look like? And none of it is straightforward. So some of it is just those type of tips. Some of our blogs as well are more kind of touching the semi clinical meaning none of them are going to replace clinical advice, none of them are replacing an audiologist or a physician, but some of them would be on topics like what is sensorineural hearing loss? What does that mean? Kind of like your your guide to sensorineural hearing loss without reading the 80 page guidelines. Yeah.
Carrie: [00:14:52] So everyday language of what sensorineural hearing loss is or other types of hearing loss to. Yeah. Well it's great to have that unbiased information in one place so that people can go to and like you said, probably um, digestible information too. So you're not reading somebodies term paper to figure out something like, how do I cook with somebody that has a different hearing level?
Gil: [00:15:20] Yeah, yeah, yeah, yeah. And sometimes we even get questions like, we recently had someone email us with a question about hearing loss and music. And so we kind of put together all the knowledge that's out there on that topic, which is a really complex topic. It's not a straightforward topic. Um, and try to really to really provide like a good, a good kind of summary of that for them.
Carrie: [00:15:46] Okay. And then the other, um, kind of area that you want to focus on is events as well. And I know and I was able to attend, um, you and some others launched an event on World Hearing Day titled um, and I might get it wrong. Is it heart the heart initiative or hear-t initiative?
Gil: [00:16:11] It's a either way the the hear t but with a twist on on heart. Yep. Okay. They hear technology. Yeah.
Carrie: [00:16:19] Yeah. So pioneering the future of hearing health care. Do you want to share a little bit about that recent event that you had.
Gil: [00:16:28] Yeah, sure. So So HearT is another really great initiative that's, uh, um, a few of us, um, women in the space of hearing health and really are the main thing we're looking there at is, again, person centered care, which is really the center of everything that I'm involved with these days. And you mentioned Ida Institute before, which we love, and we look at their resources a lot to HEART is really what we're trying to do there is to bring, uh, both clinicians and, uh, people with different hearing levels to the same events, to the same, uh, place, and also people who might be using hearing aids or might be using cochlear implants or not, might not be using any technology right now and just bring everybody to the same place, because we think in this space of audiology today, um, there's not enough in, in my view at least. So just speaking for myself right now, there's not enough of, um, having all of those people in the same place at the same time. And so we really put HEART together with the thought of, how do you how do we do that? How do we bring everyone together, um, to the same discussions. And so that's where that started. And we're going to have more events, um, coming soon for HEART. So be on the outlook for that as well.
Carrie: [00:17:52] All right. And then I know that you and I have an exciting event coming up. Um, and I'm excited to talk about it on today's podcast. So if you happen to be listening before April 4th of 2024, we are going to be Gil and I are going to be co, um, hosting an event from 7 to 8 Eastern time targeting teachers and educators. Uh, and it's titled Hearing Health for Teachers How to Hear Better in the Classroom. Do you want to share any about anything about that?
Gil: [00:18:26] Yeah, sure. And I'm super, super excited for that event. Um, and I, I don't know if I shared with you, Carrie, just yet, but some of the comments from people who are attending are are really awesome. So, you know, you and I looked at where there is either lack of awareness, which population needs more awareness or who really, um, hearing loss is affecting their ability to work or impacting, you know, their ability to work, their burnout, things like that. And, and just from our conversations with people through the coaching that we're doing, we found out that teaching is and it makes sense, right? You're standing in front of a class and if you don't hear well, um, it's very uncomfortable. And so actually, my dad, who used to be a teacher and also has hearing loss, one of the things he told me when I first asked him, I was like, what made you get your first hearing aid? Because he's a stubborn guy, um, as many people are, but he certainly is one. And he said, you know what it was? I was standing in front of a class and he was teaching high school, and they were all talking, and I could not tell where the voice was coming from, so I could hear what they were saying.
Gil: [00:19:39] I thought I understood what they were saying, but I couldn't tell which which student was saying what. And so for him, that was really impacting his ability to work. And so luckily for him, he's married to my mother, who knows a lot about hearing. So his path to getting the the support he needed was a very fast one. And he was he was on the right kind of path very quickly. But that made me think about teachers in general. And then as you and I were having conversations with different people, I think it was just very clear that it's a huge there's a huge gap there, and people could really use help understanding what kind of accessories they can use and just understanding more about it. And, and really also how to combat, um, burnout and listening fatigue. So we're going to talk about all of that very soon.
Carrie: [00:20:28] I know. And then I think that was there was a statistic that I found that 27% of educators suspect having hearing difficulties, which in turn impacts the ability to connect with those students and the coworkers. So I'm excited, too, because I'm kind of on the other side of it with being an educational audiologist. And I'm always helping kids in the classroom hear and understand better. But then the kind of flip it around and be like, oh, so many of these strategies. We can definitely be sharing with teachers too. And it would be like a full circle to help the kids, as well as the teachers who we will be sharing that information with. So I'm excited about that event. One thing I wanted to ask you, and I don't know the answer to, is these events that you are having, are they available after the event or is it just a live event?
Gil: [00:21:25] Yeah. We definitely our goal is to make all of them available after. So sometimes it takes a couple days or a week or so to get them up there. But yes, definitely. Um, that's the goal.
Carrie: [00:21:39] Okay. And so if you're listening to this podcast today and you're interested in the event, either the live event or afterwards, what do they need to do?
Gil: [00:21:51] Yeah. So the best thing to do is to go on the Humelan website. It's w w w dot m e a n a m e l a n.com. And then if you scroll down, you'll see events and just sign up. So even if you can't make the live event, if you're signed up, you will get a link to the recording later. And so either way is is valid. So just go for it.
Carrie: [00:22:15] Okay. And I will definitely link the website to in the show notes so people can easily access that as well. So thinking about Humelan and some of the key initiatives and projects, um, that you're working on, is there anything looking ahead, what are some of your long term goals and aspirations that you have?
Gil: [00:22:40] Oh man, the long term goals and aspirations are really, really big. I mean, I, I want to get to a point where everybody. Um, in, around the world really is following WHOs recommendation and we're screening everyone, you know, according to the recommendation, over the age of 55, she should be screened. I believe it's every year or so. So I want to get to that point. I want to get to the point where, um, primary care physicians are screening us for for that. And not just blood pressure. I think communication and loneliness and everything that comes with having a different hearing level, that's un, you know, you're not aware of is is big and important. So that's one big goal is to be involved in that, to be the go to hearing engagement platform. And so that's the long term you know vision for us. Then on the short term right now we're doing a bunch of events. We have our communities and we'd love to see more people, uh join. So please feel free to join them. And we're going to have a wait list for our, um, AI hearing coach come up on the website very soon. So if you know of anybody who has hearing loss and wants to try that out, um, please do. It would be on the our website shortly.
Carrie: [00:23:56] And can you expand a little bit on what that would might look like for someone that would sign up for a hearing coach?
Gil: [00:24:05] Yeah. So there's a lot of different hearing coaches, Carrie, like you're what you're doing and your hearing coach practice is a little different than what we're doing. And, um, I'm very excited for that whole field of hearing health and wellness and coaching in general. I think it's really, really needed. And there's so many of us out there doing really great work for Humelan. Our coaches are via text today only, and so really it's a complimentary service to an audiologist who's providing you with everything else. Um, and then what we do is we come in and help people in different stages. It could be someone who has a spouse and you think, maybe my spouse has hearing loss, but I don't know how to talk to them about it. And so you would be using the hearing loss, the Humelan, uh, hearing coach to just ask those questions and to to understand how to speak with them about this. And so we can help with that. So it's really a texting, um, service or a chatbot on our website right now that can help with that, for example. But we also help people who are new to hearing aids get used to them.
Gil: [00:25:11] We also help people who have had hearing aids for a long time but have a life change. For example, they're going into a new job and they just need support around that. Or maybe they have a new grandchild and they need to figure out how do you what do you do now? Um, and we've had a lot of people who have had hearing aids for a while. And what they want to understand is, is it time for cochlear implants? And what does a cochlear implant mean? For me, there's a lot of a lot of different questions. And so I would make one important point. We're not here to replace clinicians. None of the advice we give is a clinical advice. It's really a peer advice. It's really a hearing coach advice which is a very, very, very different. And sometimes it's just helping people understand. Is it the right time to go to an ENT or an audiologist? Um, if they're not sure, maybe they just need a little push to to go.
Carrie: [00:26:07] Yeah, what a great service. And like you said, it just really goes back to your vision. I think of Humelan to really empower that human potential through communication, equity and having the the community and the knowledge and the events to really, I think, fulfill that mission and vision. So Gil as we kind of wrap up today, is there anything that I didn't ask you that you wanted to share?
Gil: [00:26:41] No. I'm just so happy and delighted that you and I connected. Um, I think it's been, like, great talking to you today and, and prior to today. And it's it's really interesting as someone who has been part of the, this community right of hearing care, but not really for me, um, coming into this community, it is one of the best health care communities out there. And it's really fascinating to see how engaged clinicians and advocates, um, in the hearing space are and how collaborative everybody is. So you're, you're, you know, one of those amazing, amazing people in this space. And so just thank you for being you.
Carrie: [00:27:31] Uh, well, thank you. I really appreciate that. And I'm so excited that we got connected as well. And I could just see that we're just going to have more ideas that really spin off of different events and and collaboration. So I'm excited to see what the future holds.
Gil: [00:27:50] Yes.
Carrie: [00:27:52] Well, thank you again for being a guest today and the Empow
Ear Audiology podcast. I really appreciate you coming on and sharing all about you, Humelan, and all of the important, uh, events and knowledge and growth that you are working on, um, with your team. And I'm excited about that. And listeners, if you want to learn more, the website will be in the show notes. So please, um, click on that, explore the website. Uh, join a community and come to an event and find out what is what it is all about. Um, and if you know of anyone that needs to listen to this podcast, please share with anyone that needs to hear it. Thank you for listening.
Announcer: [00:28:39] This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 66 of empowEAR Audiology with Doctor Carrie Spangler.
Carrie: [00:00:13] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, doctor Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome everyone! I have Gil Kaminski, with me today and she is a product management and Clinical Operations leader with over 15 years of experience in healthcare, artificial intelligence and machine learning. She is the co-founder of Humelan, a public benefit corporation committed to helping individuals navigate the complexities of hearing, health and wellness through its person centered approach, community support, and an AI companion app, Humelan provides a comprehensive solution to those experiencing hearing loss. Her career is rooted in technology, research and development and clinical operations, having contributed to various healthcare and medtech organizations including including Laguana Health, DaVita Kidney Care, Wide Med Limited, and the Israel Defense Force Naval Medical Institute. Gil holds an MBA from the Wharton School and a Bachelors of Science and Biomedical Engineering from the Israel Institute of Technology. Gil, welcome to the podcast today.
Gil: [00:01:56] Hi Gary. So happy to be here. Thank you for having me.
Carrie: [00:02:00] Yes, I'm so excited. And I, I'm excited that the fact that we got connected was through LinkedIn and through a common, um, colleague who was part of the Ida Institute for Person Centered Care. So it just kind of interesting how paths cross.
Gil: [00:02:22] Yes, 100%. Yeah.
Carrie: [00:02:24] Yeah. And I wanted to, um, dive really deep into Humelan today and all of that it has to offer. But as we get started, can you just share with our listeners what Humelan is?
Gil: [00:02:39] Yeah, sure. So Humelan is a public benefit corporation, and we're really focusing on supporting people with different hearing levels. And our goal is to really see everybody, um, getting all the information and the support that they need within the space of, of, uh, hearing loss.
Carrie: [00:02:58] Okay. And I know you have a story and an inspiration behind starting here Humelan, can you share a little bit about that too?
Gil: [00:03:07] Yeah, sure. So my, um, really journey with hearing loss started as a child and um, in my case, it's not my own hearing loss, but I as I was growing up, my mother was losing her hearing and really was growing deaf. And she was hearing using hearing aids since I can remember her. And for a while there, they were just kind of this accessory that was around the house on the drawer, you know, in the kitchen. But I can't say that they were really in use as much as one would have expected. And when I think that all changed when I was about 12. Um, she's also an ENT and a surgeon, and when she was doing her fellowship, that's when she really started to use them. She also continued to lose her hearing, so she needed them more and more. But I think really there was a change for her when she met the right clinician, the right audiologist, who really showed her, uh, kind of the the tricks and the best tips on how to really benefit from hearing aids. Um, and then fast forward, she did her fellowship in cochlear implants. Um, and she's a cochlear implant surgeon. And then fast forward, she continued to to lose her hearing, unfortunately, and ended up using cochlear implants herself. And so really, I was growing up kind of experiencing progressive hearing loss progression, really from hearing aids to then. I'm an expert on the FM system. I've used it everywhere you can imagine. Um, and then all the way to, to her first cochlear implant and then her second. And I've also over the years have worked with my mother when I was younger and she was building her clinic, her private clinic, and and so I've also experienced her as a physician.
Gil: [00:04:52] And so it's really all of those experiences that really kind of brought me back. And, and I would say even the very beginning of deciding to learn biomedical engineering and specializing in AI and signal processing, for me, a lot of it had to do with hearing aids and cochlear implants and getting really excited about what that can do. And to me, cochlear implants are kind of like magic because I've seen, you know, that year before you get them and and how that's like and then a month later and how that felt for, for me as a communication partner to my mom. And so for me, that was really kind of like my professional journey to choosing to, to become an engineer. And then fast forward, I was working on all kinds of other different technologies and kidney and sleep medicine and a lot of other stuff. And so for a long, long time really wanted to come back to the to the hearing space. And over the past about 12 months, I felt like, this is this is the right time. Like things are changing. Awareness is, you know, growing over the counter hearing aids are coming out whether we like them or not. They're they're there. And so that's such an interesting change. And then when you see what the World Health Organization is doing today and the Ida Institute and all of those things coming together, I was really, really inspired to go back to hearing to the hearing space and to collaborate with my mom again.
Carrie: [00:06:20] Wow. I love how you've taken just from a young age your personal journey, and really intertwined it with a professional journey that can really empower other people, which is kind of your your vision, which is powerful for Humelan to empower human potential through communication, equity. And I know you have a lot of purposes and objectives or not a lot a several main purposes and objectives for Humelan, which include community knowledge and events. So if it's okay with you, I would love to kind of dive into those three areas and see, um, how you how does Humelan foster these supportive communities. You shared a little bit about your own growing up and and being a support, um, communication partner for your mom, but I would love to hear how this is going to be a support for others.
Gil: [00:07:18] Yeah I know thank you for that question. So I think like for, for us, what was really interesting for me, unlike I think most other people, I didn't realize that having a different hearing evel is, is something that different people look at in different ways. For me, it was so natural growing up with my mom, with hearing aids, and then with cochlear implants, that it was just part of our lives. And I was always, um, really inspired by that technology. But I never thought of it twice. For me, hearing aids is kind of like putting on glasses. And I'm also very fortunate because my mom has so much knowledge about, um, hearing aids, hearing aids and aural rehabilitation. And where do you stand when you're talking to someone who has a different hearing level? And I'm always I'm always used to walking on people's, you know, on one side of everyone. And people sometimes almost find it weird. They're like, why are you moving to my other side? But that's my mom's better side. So that's the side I've always been walking on, and I'm always thinking of where do I sit so the other person can hear me and that I can hear them best? And I think all of those little things, um, when you bring them all together, all that body of knowledge, at some point I realized I'm so fortunate with my mother's hearing loss that she knew so much that she could teach us me and my siblings, my father, everybody in our family.
Gil: [00:08:52] Enough about it that we really have good communication. I mean, we live in different countries. We speak on the phone almost every day, and it's never been the communication aspect. And even in our relationship, it's never been a barrier for us. And. even And I think that that's I realize at some point that's not the norm for everybody, because there's a learning curve that you need to get through, um, to be able to do all those things. And then there's another circle, right, of going out and, um, listening to lectures, for example, or giving lectures and all those other steps and things in your day to day life that you need to do as a person with a different hearing level. And you may not know even that there's knowledge out there and that can support you in that. And so for us, it was really important to put a lot of a lot of different ways to provide that information to people. And you mentioned the communities and different events, and we're building an AI, um, hearing coach that would also be able to help people and enhance what the audiologist is already doing with people. And so all of that is really to provide people the knowledge that they need when they need it in a very personalized way and in different modes of, of, um, models of communication, of information, so that it's easy for people to get what they need out of it.
Gil: [00:10:20] And at the end of the day, the goal is to kind of help you ask what you don't know to ask, because sometimes you don't know, especially with communication. You don't know what you don't know if that makes sense. And so it's so specific to a certain point in life. Like you're you're new to college, you're walking into a classroom. If you don't know that there are certain things that you should be given, you're not going to know how to ask for them. And, you know, an example is. One of the people we were supporting through our coaching recently. That person was new to hearing aids and had no idea that there is microphones that you could use. And for those listening to the podcast who may not know what those are, we can get into that later. But basically, imagine there's a little microphone, um, that the person you're speaking with can use and they talk into that little microphone and that goes directly into your hearing aid. So if you're in a noisy environment, it makes it makes it so much easier to hear them. And. This person. Really, that was a huge help for them. But they would have never, never known to ask for it. And so for us, some of it is just guessing what people are going to need and being able to provide it at the right time.
Carrie: [00:11:40] Yeah, that just in time. Learning is such an important part of the the hearing journey and knowing like what you said to ask for and things like that. Um, one of the things as far as the, the communities go, who should be involved in the communities and know you did mention, um, individuals who are on that hearing journey, but should anyone else also be involved in these communities?
Gil: [00:12:09] Yeah, I certainly think, um, and the way we're building the communities is anybody can open one on our website today. So if you go to Humelan.com, you can just open one or you can join one. The way we're thinking about them is both people who are experiencing, um, hearing loss or have had a different hearing levels for a while, but also people like myself who have a family member who has hearing loss, and maybe they're new to it or they've they've had it for a while, but you need to you want to learn more, or maybe you just want to have a community of people who are experiencing a similar thing. And I think there's just a lot of shared life experiences for both family members and people with hearing loss, and no one else would have had those specific experiences. And I think that's really important. Um, and I also envision at some point having communities for professionals who are responsible at different institutes to make sure that there is accessibility, because I think they must have a lot of questions. And I think people are really, really well intentioned to do the right thing. But there's just so much you need to know around hearing to do the right thing. And I think those communities could be a great place as well for people to go and just ask the questions.
Carrie: [00:13:29] Yeah, what a great way to support so many different people. You also talked about Humelan and creating like a knowledge hub too, that provides a lot of information on hearing, health and wellness. What kind of topics of knowledge would someone be able to find in your knowledge hub?
Gil: [00:13:50] Yeah. Thank you. So we're we're really thinking about what kind of questions someone with hearing loss and their support system might have. And so we started with things that are very, um, very common for people to ask, like, do I have hearing loss? Does my partner have hearing loss? We're having a family dinner and I have a guest who has hearing loss. What do I do? We want to cook together. What what does that look like? And none of it is straightforward. So some of it is just those type of tips. Some of our blogs as well are more kind of touching the semi clinical meaning none of them are going to replace clinical advice, none of them are replacing an audiologist or a physician, but some of them would be on topics like what is sensorineural hearing loss? What does that mean? Kind of like your your guide to sensorineural hearing loss without reading the 80 page guidelines. Yeah.
Carrie: [00:14:52] So everyday language of what sensorineural hearing loss is or other types of hearing loss to. Yeah. Well it's great to have that unbiased information in one place so that people can go to and like you said, probably um, digestible information too. So you're not reading somebodies term paper to figure out something like, how do I cook with somebody that has a different hearing level?
Gil: [00:15:20] Yeah, yeah, yeah, yeah. And sometimes we even get questions like, we recently had someone email us with a question about hearing loss and music. And so we kind of put together all the knowledge that's out there on that topic, which is a really complex topic. It's not a straightforward topic. Um, and try to really to really provide like a good, a good kind of summary of that for them.
Carrie: [00:15:46] Okay. And then the other, um, kind of area that you want to focus on is events as well. And I know and I was able to attend, um, you and some others launched an event on World Hearing Day titled um, and I might get it wrong. Is it heart the heart initiative or hear-t initiative?
Gil: [00:16:11] It's a either way the the hear t but with a twist on on heart. Yep. Okay. They hear technology. Yeah.
Carrie: [00:16:19] Yeah. So pioneering the future of hearing health care. Do you want to share a little bit about that recent event that you had.
Gil: [00:16:28] Yeah, sure. So So HearT is another really great initiative that's, uh, um, a few of us, um, women in the space of hearing health and really are the main thing we're looking there at is, again, person centered care, which is really the center of everything that I'm involved with these days. And you mentioned Ida Institute before, which we love, and we look at their resources a lot to HEART is really what we're trying to do there is to bring, uh, both clinicians and, uh, people with different hearing levels to the same events, to the same, uh, place, and also people who might be using hearing aids or might be using cochlear implants or not, might not be using any technology right now and just bring everybody to the same place, because we think in this space of audiology today, um, there's not enough in, in my view at least. So just speaking for myself right now, there's not enough of, um, having all of those people in the same place at the same time. And so we really put HEART together with the thought of, how do you how do we do that? How do we bring everyone together, um, to the same discussions. And so that's where that started. And we're going to have more events, um, coming soon for HEART. So be on the outlook for that as well.
Carrie: [00:17:52] All right. And then I know that you and I have an exciting event coming up. Um, and I'm excited to talk about it on today's podcast. So if you happen to be listening before April 4th of 2024, we are going to be Gil and I are going to be co, um, hosting an event from 7 to 8 Eastern time targeting teachers and educators. Uh, and it's titled Hearing Health for Teachers How to Hear Better in the Classroom. Do you want to share any about anything about that?
Gil: [00:18:26] Yeah, sure. And I'm super, super excited for that event. Um, and I, I don't know if I shared with you, Carrie, just yet, but some of the comments from people who are attending are are really awesome. So, you know, you and I looked at where there is either lack of awareness, which population needs more awareness or who really, um, hearing loss is affecting their ability to work or impacting, you know, their ability to work, their burnout, things like that. And, and just from our conversations with people through the coaching that we're doing, we found out that teaching is and it makes sense, right? You're standing in front of a class and if you don't hear well, um, it's very uncomfortable. And so actually, my dad, who used to be a teacher and also has hearing loss, one of the things he told me when I first asked him, I was like, what made you get your first hearing aid? Because he's a stubborn guy, um, as many people are, but he certainly is one. And he said, you know what it was? I was standing in front of a class and he was teaching high school, and they were all talking, and I could not tell where the voice was coming from, so I could hear what they were saying.
Gil: [00:19:39] I thought I understood what they were saying, but I couldn't tell which which student was saying what. And so for him, that was really impacting his ability to work. And so luckily for him, he's married to my mother, who knows a lot about hearing. So his path to getting the the support he needed was a very fast one. And he was he was on the right kind of path very quickly. But that made me think about teachers in general. And then as you and I were having conversations with different people, I think it was just very clear that it's a huge there's a huge gap there, and people could really use help understanding what kind of accessories they can use and just understanding more about it. And, and really also how to combat, um, burnout and listening fatigue. So we're going to talk about all of that very soon.
Carrie: [00:20:28] I know. And then I think that was there was a statistic that I found that 27% of educators suspect having hearing difficulties, which in turn impacts the ability to connect with those students and the coworkers. So I'm excited, too, because I'm kind of on the other side of it with being an educational audiologist. And I'm always helping kids in the classroom hear and understand better. But then the kind of flip it around and be like, oh, so many of these strategies. We can definitely be sharing with teachers too. And it would be like a full circle to help the kids, as well as the teachers who we will be sharing that information with. So I'm excited about that event. One thing I wanted to ask you, and I don't know the answer to, is these events that you are having, are they available after the event or is it just a live event?
Gil: [00:21:25] Yeah. We definitely our goal is to make all of them available after. So sometimes it takes a couple days or a week or so to get them up there. But yes, definitely. Um, that's the goal.
Carrie: [00:21:39] Okay. And so if you're listening to this podcast today and you're interested in the event, either the live event or afterwards, what do they need to do?
Gil: [00:21:51] Yeah. So the best thing to do is to go on the Humelan website. It's w w w dot m e a n a m e l a n.com. And then if you scroll down, you'll see events and just sign up. So even if you can't make the live event, if you're signed up, you will get a link to the recording later. And so either way is is valid. So just go for it.
Carrie: [00:22:15] Okay. And I will definitely link the website to in the show notes so people can easily access that as well. So thinking about Humelan and some of the key initiatives and projects, um, that you're working on, is there anything looking ahead, what are some of your long term goals and aspirations that you have?
Gil: [00:22:40] Oh man, the long term goals and aspirations are really, really big. I mean, I, I want to get to a point where everybody. Um, in, around the world really is following WHOs recommendation and we're screening everyone, you know, according to the recommendation, over the age of 55, she should be screened. I believe it's every year or so. So I want to get to that point. I want to get to the point where, um, primary care physicians are screening us for for that. And not just blood pressure. I think communication and loneliness and everything that comes with having a different hearing level, that's un, you know, you're not aware of is is big and important. So that's one big goal is to be involved in that, to be the go to hearing engagement platform. And so that's the long term you know vision for us. Then on the short term right now we're doing a bunch of events. We have our communities and we'd love to see more people, uh join. So please feel free to join them. And we're going to have a wait list for our, um, AI hearing coach come up on the website very soon. So if you know of anybody who has hearing loss and wants to try that out, um, please do. It would be on the our website shortly.
Carrie: [00:23:56] And can you expand a little bit on what that would might look like for someone that would sign up for a hearing coach?
Gil: [00:24:05] Yeah. So there's a lot of different hearing coaches, Carrie, like you're what you're doing and your hearing coach practice is a little different than what we're doing. And, um, I'm very excited for that whole field of hearing health and wellness and coaching in general. I think it's really, really needed. And there's so many of us out there doing really great work for Humelan. Our coaches are via text today only, and so really it's a complimentary service to an audiologist who's providing you with everything else. Um, and then what we do is we come in and help people in different stages. It could be someone who has a spouse and you think, maybe my spouse has hearing loss, but I don't know how to talk to them about it. And so you would be using the hearing loss, the Humelan, uh, hearing coach to just ask those questions and to to understand how to speak with them about this. And so we can help with that. So it's really a texting, um, service or a chatbot on our website right now that can help with that, for example. But we also help people who are new to hearing aids get used to them.
Gil: [00:25:11] We also help people who have had hearing aids for a long time but have a life change. For example, they're going into a new job and they just need support around that. Or maybe they have a new grandchild and they need to figure out how do you what do you do now? Um, and we've had a lot of people who have had hearing aids for a while. And what they want to understand is, is it time for cochlear implants? And what does a cochlear implant mean? For me, there's a lot of a lot of different questions. And so I would make one important point. We're not here to replace clinicians. None of the advice we give is a clinical advice. It's really a peer advice. It's really a hearing coach advice which is a very, very, very different. And sometimes it's just helping people understand. Is it the right time to go to an ENT or an audiologist? Um, if they're not sure, maybe they just need a little push to to go.
Carrie: [00:26:07] Yeah, what a great service. And like you said, it just really goes back to your vision. I think of Humelan to really empower that human potential through communication, equity and having the the community and the knowledge and the events to really, I think, fulfill that mission and vision. So Gil as we kind of wrap up today, is there anything that I didn't ask you that you wanted to share?
Gil: [00:26:41] No. I'm just so happy and delighted that you and I connected. Um, I think it's been, like, great talking to you today and, and prior to today. And it's it's really interesting as someone who has been part of the, this community right of hearing care, but not really for me, um, coming into this community, it is one of the best health care communities out there. And it's really fascinating to see how engaged clinicians and advocates, um, in the hearing space are and how collaborative everybody is. So you're, you're, you know, one of those amazing, amazing people in this space. And so just thank you for being you.
Carrie: [00:27:31] Uh, well, thank you. I really appreciate that. And I'm so excited that we got connected as well. And I could just see that we're just going to have more ideas that really spin off of different events and and collaboration. So I'm excited to see what the future holds.
Gil: [00:27:50] Yes.
Carrie: [00:27:52] Well, thank you again for being a guest today and the Empow
Ear Audiology podcast. I really appreciate you coming on and sharing all about you, Humelan, and all of the important, uh, events and knowledge and growth that you are working on, um, with your team. And I'm excited about that. And listeners, if you want to learn more, the website will be in the show notes. So please, um, click on that, explore the website. Uh, join a community and come to an event and find out what is what it is all about. Um, and if you know of anyone that needs to listen to this podcast, please share with anyone that needs to hear it. Thank you for listening.
Announcer: [00:28:39] This has been a production of the 3C Digital Media Network.
Episode 65: empowEAR Audiology - Dr. Jasmine Simmons
Announcer: [00:00:00] Welcome to episode 65 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, I have a very special guest with me today, and I'm going to tell you a little bit about Dr. Jasmine Simmons. She is a deaf blind audiologist and an author. She originated from Columbus, Ohio, and she now lives in Jacksonville, Florida. Inspired by her life journey, Dr Jasmine has created a captivating children's book series that sheds light on Usher's syndrome, a condition causing deafness, blindness, and balance balance issues through her unique perspective, Dr Jasmine Story embodies strength and resilience, teaching young readers how to better interact with those who may be different from themselves. Dr. Jasmine's book introduces a diverse cast of characters that takes children on an incredible journey of understanding and empathy. Her characters, both relatable and inspiring, help bridge the gap between children and individuals with diverse abilities, opening doors to to compassion and inclusivity. So, Dr. Jasmine, welcome to the empowEAR Audiology podcast. I'm so excited for you to be a guest today.
Jasmine: [00:02:03] I am so excited to be here today. Thank you so much for having me.
Carrie: [00:02:07] Well, it's so fun to reconnect with you because we have a lot of history together.
Jasmine: [00:02:14] Yeah, we definitely have. Oh my goodness. We met at University of Akron during, uh, my undergrad. Right. That's crazy.
Carrie: [00:02:24] I that was a while ago. And I still remember the day that you came to my door when I was working at the university and introduced yourself. I think you might have been taking a class that you were, um, not excited about taking.
Jasmine: [00:02:46] Yeah. Oh, my goodness. I just I just remember, you know, you being at Akron and just being my mentor, like, it was such a profound time for me. And it was just amazing just having you alongside my journey.
Carrie: [00:03:04] Well. I am so glad that I could be a small part of your journey. And yeah, I'm so excited for everything that you have become. Um, since we met way back in your undergrad, uh, career. Uh, but every time I have someone on the podcast that has gone into audiology, I love to hear their story. And I think our listeners do, too. So do you want to share a little bit about how you decided to have the pathway to audiology?
Jasmine: [00:03:39] Oh, absolutely. So I was born profoundly deaf, and at the age of two, I received my cochlear implant. And throughout my life, I always knew I wanted to be a helper. I knew I wanted to be in the healthcare. And it was when I was in seventh grade, my mom and I were in the car and, you know, you know, little me was thinking like, what should I do with my life? I want to do something, but I just don't know what. And she was like, Jasmine, like, what about audiology? And ever since then, like, oh my gosh. Yeah. Like it just clicked for me. So I just knew that that's what I was destined to do. And I went ahead and achieved that goal.
Carrie: [00:04:26] Yes, he did, and so much more. Do you want to share a little bit about where you're at right now? Working. Uh.
Jasmine: [00:04:36] Yes. So I currently work at Jacksonville Speech and Hearing, a nonprofit clinic, and it's such a great job because, you know, we work with the underserved populations. And if, um, a patient is, um, under the income means and they live in Duval County and Jacksonville, they are eligible to get a free set of hearing aids. So it's just a very rewarding job. And also they can get free speech therapy services, um, through different grants. So it's just very enjoyable to work at the company I am. And just to help people, you know, be able to hear and, um, for them to be able to communicate with their loved ones.
Carrie: [00:05:22] Wow, what a great service to that area. And I'm so glad you're there. Just, um, thinking about, like, before we get into your book and everything, which I really want to talk about, but I know you said like I was a mentor to you, but I know that you have been an incredible mentor to so many people along the way. And I just remember talking to you about being a part of the campUS experience, which, um, Dr Gail Whitelaw and I co coordinate a overnight camp that was at Ohio State University, and we needed counselors who were deaf and hard of hearing. And I remember asking you if you would be willing to volunteer. And I don't even think I told you what you were volunteering for, but you said yes, and then you volunteered your brother.
Jasmine: [00:06:16] Absolutely.
Carrie: [00:06:18] Yes, I sure did. Yeah. You're like, oh, my brother, my brother could be a part of this too. And then, um, but you and Justin were just, like, such an integral part of, like, the startup and of the campUS program and mentoring so many high school students who were thinking about going to college or going to work and had never met anyone else who was deaf or hard of hearing. So I just wanted to thank you for like, your participation in that, because I feel like you were a counselor for at least like 3 or 4 years, maybe even longer.
Jasmine: [00:06:57] Yeah. It was I mean, it was such a wonderful experience. And that was the first like the start of me being a camp counselor. And it was just wonderful being able to see these teenagers bond. And like you said, some of these teens have never met other people with hearing loss. So it's it's only two days. But those two days were such impactful moments for these teens. So I thank you and Dr Whitelaw for even, you know, hosting camps like these because it is so needed. It is so needed. And I know these kids, I, I am Facebook friends with some of them. I see them, you know, in college and, you know, working. I'm just like, oh my gosh. Like I'm just so proud of these kids that go through these programs. And I know they remember these moments because I remember going through camp when I was younger, and I still remember it to this day, and how it has such a empowering or impactful impact on me.
Carrie: [00:08:06] Yeah, definitely. Especially when you're a one and only and a place and you don't have the opportunity to meet someone else, and then you come here and you realize, whoa, like there's other people like me out there in the world. So which is kind of a great segue into your book. So audiologist and author Dr Jasmine Simmons, I'm so excited for you. Because so and I just have to say, I got my book and I am in love with the extraordinary Jordan and her bionic ears. From the character to the illustration to the storyline, everything is phenomenal. So tell me Just for our listeners, can you just share a little like an overview and then we'll dig deeper into into your book.
Jasmine: [00:09:03] Yeah. So, um, I just what really inspired me to write this book. Um, I remember I was an educational audiologist in North Carolina, and I met this family of a little girl who had usher syndrome. And I just remember the mom, just like I signed her up for everything, and I just. I don't know how to explain this to my kid, like, there's nothing really out there. And at that moment, I just knew I was going to write a children's book. I was just knew. I just didn't know when. But I knew it was going to happen. Um, and this past February, I was diagnosed as legally blind. And I was just, you know, sitting there like, what do I want to do? Like what? What will, you know, help me get through this? And that was the time I decided I was going to write the Usher Syndrome series. I just knew it was time. And, you know, as I was writing this book, I actually met a, um, girl. Her name was Jordan, and she was going through some bullying in school and just. You know, dealing with the confidence issue with her hearing loss. And I just knew that that was going to be my character's name. And, you know, just in honor of her. Um, but yeah, it's just it's a really great story, and I can't wait to talk a little bit more about it.
Carrie: [00:10:37] Yeah, I love that. So you had, like, your own personal background, plus your experience as an educational audiologist and then meeting a family who was kind of struggling with how to explain this, and then another person who kind of was having this bullying experience. So kind of a combination of lots of different things. So absolutely. Yeah. Just a step a little bit backwards for a second. Do you want to share a little bit about your hearing history and how like how it's progressed over the years.
Jasmine: [00:11:17] Mhm. So um, I was born deaf. I got my cochlear implant at age of two. At the age of seven, I was diagnosed with a condition called retinitis pigmentosa. Retinitis pigmentosa. And it affects your, um, nighttime vision and it also affects your peripheral vision. So as I got older, my vision has progressed. So that's, uh, at the age of 25, I was officially diagnosed with usher syndrome and through genetic testing. So that's just kind of what prompted me to write the Usher Syndrome series as well, because many people don't know what Usher Syndrome is. So it's definitely was one of my mission to spread the word. What is usher syndrome? So that way, you know, more research can be done, more people can learn about this, and hopefully, you know, they can find a cure one day for sight loss, you know? So that was really my mission to behind this series as well.
Carrie: [00:12:29] Um, and I love how you said earlier too, that this you you knew you always wanted to write this book, but at the same time, you said this was kind of part of your own healing process, too. Can you share a little bit more about that?
Jasmine: [00:12:46] Yeah. So writing this book has been so healing for me. Um, it's just this became my my distraction. This became my baby. Um, you know, so everybody has to find their ways of coping with, you know, a diagnosis. And, you know, writing this children's book was my way of coping and coming to terms with my vision loss. And it actually helped me gain more confidence as I share my story. And it's just, you know, hearing other people going through something similar or could be a few steps behind me or a few steps ahead of me, and it's just so beautiful to be able to communicate with others and just help each other along this journey.
Carrie: [00:13:37] Yeah. It really I love how you talked about those people in front of you and people behind you. That and walking alongside of you that are on this journey and can help with that process too. So extraordinary. Jordan in the book. Um, what is like the main message or theme that you are trying to convey to those who are reading your book?
Jasmine: [00:14:07] You know, as I read this book, I learn there are so many different messages behind this book and I'm like, oh yeah, this is a great for this and this is great for that. Um, but, you know, overall, I wanted kids to show or kids to be confident in who they are. You know, just you are extraordinary. Like that is the overall message. Just be confident and you know, you are going to have some challenges and that is okay. But you will overcome those challenges if you are confident and who you are.
Carrie: [00:14:47] Mhm. Yeah.And I feel like Jordan can represent lots of different areas of confidence. So whether it is, you know, her um bionic ears as you call them when she calls them in the book or it's another area of challenge that like you can still be extraordinary in whatever challenge you have.
Jasmine: [00:15:12] Exactly, exactly.
Carrie: [00:15:16] Um, so as far as, um, the book goes, I you said, you know, the as you keep reading through it, you have found some other like themes and, and ways, um, that people might be able to, to use the book. Do you want to share a little bit more about your the themes in there?
Jasmine: [00:15:40] I mean, it's a great book for social, um, emotional learning. Um, I think it's just it also it's also great book for kids who aren't familiar with, you know, differences, you know, something that's different from them. You know, like Ben in the store doesn't know what this device is. So obviously he's going to act different towards it. But then, you know, he learns more about it. So it's just acceptance and just understanding. And also it's important to I want to relay that kids aren't mean. They just don't understand. And and that's okay. That's when you want to teach those kids that, yes, there may be somebody that looks different from you or have something different from you and just be able to understand and they are unable to understand what is happening.
Carrie: [00:16:42] Yeah and I know that part of part of the book, and I don't want to give it all away because I know people need to read it. Um, but Jordan remembers that, like her dad had said, you know, that you're extraordinary. And she kind of remembers that as part of, you know, kind of getting empowered to stand up for herself and be confident. Is that another message, like for parents, guardians, like teachers, different, you know, mentors and, um, figures in their life to, to teach this?
Jasmine: [00:17:18] Oh, absolutely. It's. Words matter. Kids pick up on positivity and they also pick up on negativity. So just empowering kids is so important because that really affects alters their confidence and helps them be more confident. So definitely like affirmations, you know you are extraordinary. You know you're hearing loss doesn't make you less than like you are extraordinary.
Carrie: [00:17:51] Yeah. So on a personal level, does Jordan reflect you at all?
Jasmine: [00:17:59] Um, there is definitely some personal moments in that story that I personally experienced that I wanted to convey in that story, and that also was healing, just talking about it, you know? So and just I know I'm not alone in this. And so I want kids other to see this and be like, oh, you know, it actually it has happened. That happened to me. Or, you know, I just want them to be confident. Um, that's just really, truly the overall message I really want to convey is be confident in who you are. Because, you know, my parents instilled that in my brother and I, you know, that is why I am the person I am today. Because, you know, my parents have never made us feel ashamed of who we are and just taught us to embrace it. So that's also with the parents, you know, positivity that also conveys through my parents as well.
Carrie: [00:19:03] Yeah. And I know both of your parents and I can see how they would have instilled that in you, um, throughout, throughout your life too. So I love how that shines through in the book, too. So kind of talking about the nuts and bolts of the book, like, were there any challenges that you had, like getting started writing your book or all of that? You said it was a long process, but what were your challenges?
Jasmine: [00:19:35] Oh my goodness. Um, the day I decided to write a book and I had no idea how much work it went into writing the book, you know, just you have to worry about, you know, copywriting, the book and, you know, getting the ISBN numbers and, um, you know, getting beta readers, like, I didn't know you had to do all that. It was just all trial and error, you know, just learning as I go, asking different authors, hey, you know, what should I do? And one was like, yeah, you need beta readers. I was like, oh, I do. Okay. Um, and it's just beta readers really help shape your book. You know, you have all these different visions and, you know, they help like, whoa, whoa, whoa, slow down. Okay, let's talk this through. It doesn't make sense, you know, put it together. So it was just very helpful. And gain editors, developmental editors, there's a lot that goes through writing a children's book, but it was very rewarding.
Carrie: [00:20:46] But it was. And your illustrator too, was amazing. How did you find her?
Jasmine: [00:20:55] Oh my goodness, I, I truly lucked out with my illustrator. Um, I went on the platform called Upwork and oh my goodness, she was the very first person that actually reached out to me. And I was like, okay. And I did a little bit more research. And then I just saw that, um, what really drew me in was she had a just a person who had, um, an amputated leg. And I just like, wow, okay. So I'm like, you know what? Let me check her out. And she exceeded beyond my expectations. She just I love her, and she did an amazing job.
Carrie: [00:21:42] So did you ever meet her in person or. This was all, like, visual, like videos or virtually.
Jasmine: [00:21:49] Um, I have not met her in person. She lives in California, so I hope to meet her in person one day. And I hope we can work together on other projects as well.
Carrie: [00:22:04] Yeah. And you kind of mentioned, um, when when I read your bio too, that this is the Usher Syndrome series. So what did that mean for Jordan?
Jasmine: [00:22:17] So actually, Jordan is I actually want to do different people for my books. However, Jordan will appear in my final series. Um, so I my vision is to as I meet people, I want to name my characters after people I have met. Um, and so that way those kids can see them in the book and feel inspired.
Carrie: [00:22:49] Ah, I love that. So what is, um, the real Jordan that this book is named after? Has she, um, given you any feedback about the book?
Jasmine: [00:23:02] Yeah, she absolutely loved it. And I remember the day I told her that I was naming my character after her. She, her mom was was telling me that she was so excited that she went and told everybody at her school saying, you know, I have a character named after me. And it was just heartwarming just to see how her face lit up when she found out that her her name was being used.
Carrie: [00:23:32] Uh huh. Well, that sounds like you need to be doing a book launch at that school.
Jasmine: [00:23:38] I'm working on it. I'm working on it.
Carrie: [00:23:42] Yeah. And so at the time of this recording right now, um, for our listeners, I mean, your book is just gone out, like, you've kind of released it, like people are receiving it. What kind of feedback? What kind of feedback have you received so far?
Jasmine: [00:24:00] Um, people have mentioned how much they loved the illustrations. The illustrations are phenomenal and they love the message behind the story. Um, uh, they also just love just the characters and the how, the ending, the how it ties it in at the end. I can't give it away, but they just love the ending. Um, and lastly, they love the, um, five ways to be More Inclusive. Um, so yeah, great. Great feedback so far.
Carrie: [00:24:39] Yeah. As an educational audiologist, I just got this book this week, but I can see how this would be an extraordinary teaching tool, um, to do with, you know, to read with students and just reread and, and go back and really dig deeper and ask questions with them, like, how has this ever happened to you? Or can you relate to Jordan anyway? So this has so much application for, um, teaching and empowering students with any kind of differences, but specifically our deaf and hard of hearing children.
Jasmine: [00:25:18] Absolutely. I, I really want to write this book to target kids with hearing loss. However, I also wanted to target just kids in general, so that way they can learn about hearing aids and cochlear implants because, you know, some kids don't. They don't know what it is. So I just want them to understand that not everybody is going to look like them. So it's it's yeah.
Carrie: [00:25:47] Yeah. And so you you touched on it, but you talked about five ways to teach about inclusivity. How did that come up as far as like a great way to kind of finish off your book?
Jasmine: [00:26:03] Yeah. So originally I wanted to end off with, you know, affirmations. You know, I just wanted to figure out ways to help empower children. And but I feel like it was very popular. Everybody was doing affirmations. So I wanted to do something a little bit different and leave it off as a teachable moment for not only the kids, the adults to like, oh, how to be more inclusive. Um, so that's just the idea I came up with. I was like, oh, why not figure out a way to teach them how to be more inclusive? And that's how I came up with it.
Carrie: [00:26:45] I love it because it really does kind of, um, make you think a little bit deeper about the book, I think, too, and then apply it.
Jasmine: [00:26:58] Yeah, I definitely wanted to, um, you know, just adults to teach kids. Okay? Like, if you have to be kind, um, you know, just actions, like at your actions matter. Like, you know, showing that adults, kids are watching. So if you implement it, they are going likely model what you're doing. And, you know, reading my book helps, you know, teach kids to be more inclusive. So I just I just thought that was a very important message.
Carrie: [00:27:33] Yeah. And that is a great way to, um, like, kind of wrap up everything in the book with a nice bow at the end. Right. Uh, is there anything that I forgot to ask you that you were hoping I would ask about? Whether it was you personally, or the book or your process.
Jasmine: [00:28:02] Um, you can if you always. If you have any questions, you can always reach out to me. Um, you know, I'm an open book. I always like to share about my experiences as a deafblind individual. Um, and you can always reach out to me on my Instagram at Dr Jasmine Simmons. Uh, it' DR and then my full name or also Dr Jasmine Simmons. Com on my website. And I'm always available to us answer some questions.
Carrie: [00:28:37] And what I can do is I can definitely, um, put that information in the show notes so that people can click on it and go directly to your social media and your website and, um, order your book as well and get that shipped directly to them.
Jasmine: [00:28:57] Absolutely. And I really, truly hope you guys enjoy this story. And this was my baby is is my baby. And I just hope you guys enjoy as much as I did.
Carrie: [00:29:11] Yeah, well I know just reading this book, um, and getting it. I cannot wait to share this book with the students that I get to serve, um, throughout my work. And I'm already thinking about the ones that I really want to share it with. So I'm going to be ordering some more copies, um, in the very near future. And, um, with that, I also want to just say thank you, Jasmine, for everything that you do and everything that you are. I'm just so grateful to know you, um, for such a long time. And you just hold a special place in my heart. So thank you for being part of the EmpowEAR Audiology podcast.
Jasmine: [00:29:55] And I just want to say thank you as well. And you've been instrumental. So thank you for having me. And it's it's an honor.
Carrie: [00:30:06] All right so listeners, make sure that you hop on to Dr Jasmine Simmon's website, her social media, and be sure to reserve your book of extraordinary Jordan and her bionic ears. And if you love this podcast, please be sure to share with anyone who would also enjoy listening. Thank you.
Announcer: [00:30:33] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 65 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, I have a very special guest with me today, and I'm going to tell you a little bit about Dr. Jasmine Simmons. She is a deaf blind audiologist and an author. She originated from Columbus, Ohio, and she now lives in Jacksonville, Florida. Inspired by her life journey, Dr Jasmine has created a captivating children's book series that sheds light on Usher's syndrome, a condition causing deafness, blindness, and balance balance issues through her unique perspective, Dr Jasmine Story embodies strength and resilience, teaching young readers how to better interact with those who may be different from themselves. Dr. Jasmine's book introduces a diverse cast of characters that takes children on an incredible journey of understanding and empathy. Her characters, both relatable and inspiring, help bridge the gap between children and individuals with diverse abilities, opening doors to to compassion and inclusivity. So, Dr. Jasmine, welcome to the empowEAR Audiology podcast. I'm so excited for you to be a guest today.
Jasmine: [00:02:03] I am so excited to be here today. Thank you so much for having me.
Carrie: [00:02:07] Well, it's so fun to reconnect with you because we have a lot of history together.
Jasmine: [00:02:14] Yeah, we definitely have. Oh my goodness. We met at University of Akron during, uh, my undergrad. Right. That's crazy.
Carrie: [00:02:24] I that was a while ago. And I still remember the day that you came to my door when I was working at the university and introduced yourself. I think you might have been taking a class that you were, um, not excited about taking.
Jasmine: [00:02:46] Yeah. Oh, my goodness. I just I just remember, you know, you being at Akron and just being my mentor, like, it was such a profound time for me. And it was just amazing just having you alongside my journey.
Carrie: [00:03:04] Well. I am so glad that I could be a small part of your journey. And yeah, I'm so excited for everything that you have become. Um, since we met way back in your undergrad, uh, career. Uh, but every time I have someone on the podcast that has gone into audiology, I love to hear their story. And I think our listeners do, too. So do you want to share a little bit about how you decided to have the pathway to audiology?
Jasmine: [00:03:39] Oh, absolutely. So I was born profoundly deaf, and at the age of two, I received my cochlear implant. And throughout my life, I always knew I wanted to be a helper. I knew I wanted to be in the healthcare. And it was when I was in seventh grade, my mom and I were in the car and, you know, you know, little me was thinking like, what should I do with my life? I want to do something, but I just don't know what. And she was like, Jasmine, like, what about audiology? And ever since then, like, oh my gosh. Yeah. Like it just clicked for me. So I just knew that that's what I was destined to do. And I went ahead and achieved that goal.
Carrie: [00:04:26] Yes, he did, and so much more. Do you want to share a little bit about where you're at right now? Working. Uh.
Jasmine: [00:04:36] Yes. So I currently work at Jacksonville Speech and Hearing, a nonprofit clinic, and it's such a great job because, you know, we work with the underserved populations. And if, um, a patient is, um, under the income means and they live in Duval County and Jacksonville, they are eligible to get a free set of hearing aids. So it's just a very rewarding job. And also they can get free speech therapy services, um, through different grants. So it's just very enjoyable to work at the company I am. And just to help people, you know, be able to hear and, um, for them to be able to communicate with their loved ones.
Carrie: [00:05:22] Wow, what a great service to that area. And I'm so glad you're there. Just, um, thinking about, like, before we get into your book and everything, which I really want to talk about, but I know you said like I was a mentor to you, but I know that you have been an incredible mentor to so many people along the way. And I just remember talking to you about being a part of the campUS experience, which, um, Dr Gail Whitelaw and I co coordinate a overnight camp that was at Ohio State University, and we needed counselors who were deaf and hard of hearing. And I remember asking you if you would be willing to volunteer. And I don't even think I told you what you were volunteering for, but you said yes, and then you volunteered your brother.
Jasmine: [00:06:16] Absolutely.
Carrie: [00:06:18] Yes, I sure did. Yeah. You're like, oh, my brother, my brother could be a part of this too. And then, um, but you and Justin were just, like, such an integral part of, like, the startup and of the campUS program and mentoring so many high school students who were thinking about going to college or going to work and had never met anyone else who was deaf or hard of hearing. So I just wanted to thank you for like, your participation in that, because I feel like you were a counselor for at least like 3 or 4 years, maybe even longer.
Jasmine: [00:06:57] Yeah. It was I mean, it was such a wonderful experience. And that was the first like the start of me being a camp counselor. And it was just wonderful being able to see these teenagers bond. And like you said, some of these teens have never met other people with hearing loss. So it's it's only two days. But those two days were such impactful moments for these teens. So I thank you and Dr Whitelaw for even, you know, hosting camps like these because it is so needed. It is so needed. And I know these kids, I, I am Facebook friends with some of them. I see them, you know, in college and, you know, working. I'm just like, oh my gosh. Like I'm just so proud of these kids that go through these programs. And I know they remember these moments because I remember going through camp when I was younger, and I still remember it to this day, and how it has such a empowering or impactful impact on me.
Carrie: [00:08:06] Yeah, definitely. Especially when you're a one and only and a place and you don't have the opportunity to meet someone else, and then you come here and you realize, whoa, like there's other people like me out there in the world. So which is kind of a great segue into your book. So audiologist and author Dr Jasmine Simmons, I'm so excited for you. Because so and I just have to say, I got my book and I am in love with the extraordinary Jordan and her bionic ears. From the character to the illustration to the storyline, everything is phenomenal. So tell me Just for our listeners, can you just share a little like an overview and then we'll dig deeper into into your book.
Jasmine: [00:09:03] Yeah. So, um, I just what really inspired me to write this book. Um, I remember I was an educational audiologist in North Carolina, and I met this family of a little girl who had usher syndrome. And I just remember the mom, just like I signed her up for everything, and I just. I don't know how to explain this to my kid, like, there's nothing really out there. And at that moment, I just knew I was going to write a children's book. I was just knew. I just didn't know when. But I knew it was going to happen. Um, and this past February, I was diagnosed as legally blind. And I was just, you know, sitting there like, what do I want to do? Like what? What will, you know, help me get through this? And that was the time I decided I was going to write the Usher Syndrome series. I just knew it was time. And, you know, as I was writing this book, I actually met a, um, girl. Her name was Jordan, and she was going through some bullying in school and just. You know, dealing with the confidence issue with her hearing loss. And I just knew that that was going to be my character's name. And, you know, just in honor of her. Um, but yeah, it's just it's a really great story, and I can't wait to talk a little bit more about it.
Carrie: [00:10:37] Yeah, I love that. So you had, like, your own personal background, plus your experience as an educational audiologist and then meeting a family who was kind of struggling with how to explain this, and then another person who kind of was having this bullying experience. So kind of a combination of lots of different things. So absolutely. Yeah. Just a step a little bit backwards for a second. Do you want to share a little bit about your hearing history and how like how it's progressed over the years.
Jasmine: [00:11:17] Mhm. So um, I was born deaf. I got my cochlear implant at age of two. At the age of seven, I was diagnosed with a condition called retinitis pigmentosa. Retinitis pigmentosa. And it affects your, um, nighttime vision and it also affects your peripheral vision. So as I got older, my vision has progressed. So that's, uh, at the age of 25, I was officially diagnosed with usher syndrome and through genetic testing. So that's just kind of what prompted me to write the Usher Syndrome series as well, because many people don't know what Usher Syndrome is. So it's definitely was one of my mission to spread the word. What is usher syndrome? So that way, you know, more research can be done, more people can learn about this, and hopefully, you know, they can find a cure one day for sight loss, you know? So that was really my mission to behind this series as well.
Carrie: [00:12:29] Um, and I love how you said earlier too, that this you you knew you always wanted to write this book, but at the same time, you said this was kind of part of your own healing process, too. Can you share a little bit more about that?
Jasmine: [00:12:46] Yeah. So writing this book has been so healing for me. Um, it's just this became my my distraction. This became my baby. Um, you know, so everybody has to find their ways of coping with, you know, a diagnosis. And, you know, writing this children's book was my way of coping and coming to terms with my vision loss. And it actually helped me gain more confidence as I share my story. And it's just, you know, hearing other people going through something similar or could be a few steps behind me or a few steps ahead of me, and it's just so beautiful to be able to communicate with others and just help each other along this journey.
Carrie: [00:13:37] Yeah. It really I love how you talked about those people in front of you and people behind you. That and walking alongside of you that are on this journey and can help with that process too. So extraordinary. Jordan in the book. Um, what is like the main message or theme that you are trying to convey to those who are reading your book?
Jasmine: [00:14:07] You know, as I read this book, I learn there are so many different messages behind this book and I'm like, oh yeah, this is a great for this and this is great for that. Um, but, you know, overall, I wanted kids to show or kids to be confident in who they are. You know, just you are extraordinary. Like that is the overall message. Just be confident and you know, you are going to have some challenges and that is okay. But you will overcome those challenges if you are confident and who you are.
Carrie: [00:14:47] Mhm. Yeah.And I feel like Jordan can represent lots of different areas of confidence. So whether it is, you know, her um bionic ears as you call them when she calls them in the book or it's another area of challenge that like you can still be extraordinary in whatever challenge you have.
Jasmine: [00:15:12] Exactly, exactly.
Carrie: [00:15:16] Um, so as far as, um, the book goes, I you said, you know, the as you keep reading through it, you have found some other like themes and, and ways, um, that people might be able to, to use the book. Do you want to share a little bit more about your the themes in there?
Jasmine: [00:15:40] I mean, it's a great book for social, um, emotional learning. Um, I think it's just it also it's also great book for kids who aren't familiar with, you know, differences, you know, something that's different from them. You know, like Ben in the store doesn't know what this device is. So obviously he's going to act different towards it. But then, you know, he learns more about it. So it's just acceptance and just understanding. And also it's important to I want to relay that kids aren't mean. They just don't understand. And and that's okay. That's when you want to teach those kids that, yes, there may be somebody that looks different from you or have something different from you and just be able to understand and they are unable to understand what is happening.
Carrie: [00:16:42] Yeah and I know that part of part of the book, and I don't want to give it all away because I know people need to read it. Um, but Jordan remembers that, like her dad had said, you know, that you're extraordinary. And she kind of remembers that as part of, you know, kind of getting empowered to stand up for herself and be confident. Is that another message, like for parents, guardians, like teachers, different, you know, mentors and, um, figures in their life to, to teach this?
Jasmine: [00:17:18] Oh, absolutely. It's. Words matter. Kids pick up on positivity and they also pick up on negativity. So just empowering kids is so important because that really affects alters their confidence and helps them be more confident. So definitely like affirmations, you know you are extraordinary. You know you're hearing loss doesn't make you less than like you are extraordinary.
Carrie: [00:17:51] Yeah. So on a personal level, does Jordan reflect you at all?
Jasmine: [00:17:59] Um, there is definitely some personal moments in that story that I personally experienced that I wanted to convey in that story, and that also was healing, just talking about it, you know? So and just I know I'm not alone in this. And so I want kids other to see this and be like, oh, you know, it actually it has happened. That happened to me. Or, you know, I just want them to be confident. Um, that's just really, truly the overall message I really want to convey is be confident in who you are. Because, you know, my parents instilled that in my brother and I, you know, that is why I am the person I am today. Because, you know, my parents have never made us feel ashamed of who we are and just taught us to embrace it. So that's also with the parents, you know, positivity that also conveys through my parents as well.
Carrie: [00:19:03] Yeah. And I know both of your parents and I can see how they would have instilled that in you, um, throughout, throughout your life too. So I love how that shines through in the book, too. So kind of talking about the nuts and bolts of the book, like, were there any challenges that you had, like getting started writing your book or all of that? You said it was a long process, but what were your challenges?
Jasmine: [00:19:35] Oh my goodness. Um, the day I decided to write a book and I had no idea how much work it went into writing the book, you know, just you have to worry about, you know, copywriting, the book and, you know, getting the ISBN numbers and, um, you know, getting beta readers, like, I didn't know you had to do all that. It was just all trial and error, you know, just learning as I go, asking different authors, hey, you know, what should I do? And one was like, yeah, you need beta readers. I was like, oh, I do. Okay. Um, and it's just beta readers really help shape your book. You know, you have all these different visions and, you know, they help like, whoa, whoa, whoa, slow down. Okay, let's talk this through. It doesn't make sense, you know, put it together. So it was just very helpful. And gain editors, developmental editors, there's a lot that goes through writing a children's book, but it was very rewarding.
Carrie: [00:20:46] But it was. And your illustrator too, was amazing. How did you find her?
Jasmine: [00:20:55] Oh my goodness, I, I truly lucked out with my illustrator. Um, I went on the platform called Upwork and oh my goodness, she was the very first person that actually reached out to me. And I was like, okay. And I did a little bit more research. And then I just saw that, um, what really drew me in was she had a just a person who had, um, an amputated leg. And I just like, wow, okay. So I'm like, you know what? Let me check her out. And she exceeded beyond my expectations. She just I love her, and she did an amazing job.
Carrie: [00:21:42] So did you ever meet her in person or. This was all, like, visual, like videos or virtually.
Jasmine: [00:21:49] Um, I have not met her in person. She lives in California, so I hope to meet her in person one day. And I hope we can work together on other projects as well.
Carrie: [00:22:04] Yeah. And you kind of mentioned, um, when when I read your bio too, that this is the Usher Syndrome series. So what did that mean for Jordan?
Jasmine: [00:22:17] So actually, Jordan is I actually want to do different people for my books. However, Jordan will appear in my final series. Um, so I my vision is to as I meet people, I want to name my characters after people I have met. Um, and so that way those kids can see them in the book and feel inspired.
Carrie: [00:22:49] Ah, I love that. So what is, um, the real Jordan that this book is named after? Has she, um, given you any feedback about the book?
Jasmine: [00:23:02] Yeah, she absolutely loved it. And I remember the day I told her that I was naming my character after her. She, her mom was was telling me that she was so excited that she went and told everybody at her school saying, you know, I have a character named after me. And it was just heartwarming just to see how her face lit up when she found out that her her name was being used.
Carrie: [00:23:32] Uh huh. Well, that sounds like you need to be doing a book launch at that school.
Jasmine: [00:23:38] I'm working on it. I'm working on it.
Carrie: [00:23:42] Yeah. And so at the time of this recording right now, um, for our listeners, I mean, your book is just gone out, like, you've kind of released it, like people are receiving it. What kind of feedback? What kind of feedback have you received so far?
Jasmine: [00:24:00] Um, people have mentioned how much they loved the illustrations. The illustrations are phenomenal and they love the message behind the story. Um, uh, they also just love just the characters and the how, the ending, the how it ties it in at the end. I can't give it away, but they just love the ending. Um, and lastly, they love the, um, five ways to be More Inclusive. Um, so yeah, great. Great feedback so far.
Carrie: [00:24:39] Yeah. As an educational audiologist, I just got this book this week, but I can see how this would be an extraordinary teaching tool, um, to do with, you know, to read with students and just reread and, and go back and really dig deeper and ask questions with them, like, how has this ever happened to you? Or can you relate to Jordan anyway? So this has so much application for, um, teaching and empowering students with any kind of differences, but specifically our deaf and hard of hearing children.
Jasmine: [00:25:18] Absolutely. I, I really want to write this book to target kids with hearing loss. However, I also wanted to target just kids in general, so that way they can learn about hearing aids and cochlear implants because, you know, some kids don't. They don't know what it is. So I just want them to understand that not everybody is going to look like them. So it's it's yeah.
Carrie: [00:25:47] Yeah. And so you you touched on it, but you talked about five ways to teach about inclusivity. How did that come up as far as like a great way to kind of finish off your book?
Jasmine: [00:26:03] Yeah. So originally I wanted to end off with, you know, affirmations. You know, I just wanted to figure out ways to help empower children. And but I feel like it was very popular. Everybody was doing affirmations. So I wanted to do something a little bit different and leave it off as a teachable moment for not only the kids, the adults to like, oh, how to be more inclusive. Um, so that's just the idea I came up with. I was like, oh, why not figure out a way to teach them how to be more inclusive? And that's how I came up with it.
Carrie: [00:26:45] I love it because it really does kind of, um, make you think a little bit deeper about the book, I think, too, and then apply it.
Jasmine: [00:26:58] Yeah, I definitely wanted to, um, you know, just adults to teach kids. Okay? Like, if you have to be kind, um, you know, just actions, like at your actions matter. Like, you know, showing that adults, kids are watching. So if you implement it, they are going likely model what you're doing. And, you know, reading my book helps, you know, teach kids to be more inclusive. So I just I just thought that was a very important message.
Carrie: [00:27:33] Yeah. And that is a great way to, um, like, kind of wrap up everything in the book with a nice bow at the end. Right. Uh, is there anything that I forgot to ask you that you were hoping I would ask about? Whether it was you personally, or the book or your process.
Jasmine: [00:28:02] Um, you can if you always. If you have any questions, you can always reach out to me. Um, you know, I'm an open book. I always like to share about my experiences as a deafblind individual. Um, and you can always reach out to me on my Instagram at Dr Jasmine Simmons. Uh, it' DR and then my full name or also Dr Jasmine Simmons. Com on my website. And I'm always available to us answer some questions.
Carrie: [00:28:37] And what I can do is I can definitely, um, put that information in the show notes so that people can click on it and go directly to your social media and your website and, um, order your book as well and get that shipped directly to them.
Jasmine: [00:28:57] Absolutely. And I really, truly hope you guys enjoy this story. And this was my baby is is my baby. And I just hope you guys enjoy as much as I did.
Carrie: [00:29:11] Yeah, well I know just reading this book, um, and getting it. I cannot wait to share this book with the students that I get to serve, um, throughout my work. And I'm already thinking about the ones that I really want to share it with. So I'm going to be ordering some more copies, um, in the very near future. And, um, with that, I also want to just say thank you, Jasmine, for everything that you do and everything that you are. I'm just so grateful to know you, um, for such a long time. And you just hold a special place in my heart. So thank you for being part of the EmpowEAR Audiology podcast.
Jasmine: [00:29:55] And I just want to say thank you as well. And you've been instrumental. So thank you for having me. And it's it's an honor.
Carrie: [00:30:06] All right so listeners, make sure that you hop on to Dr Jasmine Simmon's website, her social media, and be sure to reserve your book of extraordinary Jordan and her bionic ears. And if you love this podcast, please be sure to share with anyone who would also enjoy listening. Thank you.
Announcer: [00:30:33] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 64: empowEAR Audiology - Dr. Andrea Warner-Czyz
Announcer: [00:00:00] Welcome to episode 64 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, today I have with me a friend and colleague, Dr. Andrea Warner-Czyz, and she is an associate professor in the Department of Speech, Language and Hearing in the School of Behavioral and Brain Sciences at the University of Texas in Dallas. Her research investigates communication and quality of life in children and adolescents who are deaf and hard of hearing, and use cochlear implants. Her primary, um professional goal centers on a whole person approach drawing and speech language, pathology, psychology, and audiology to develop data driven recommendations to improve social well-being in patients who are deaf and hard of hearing. So, Andrea, welcome to the podcast.
Andrea: [00:01:29] Thanks so much for having me.
Carrie: [00:01:31] I'm excited. I know we've been trying to coordinate our schedules for this podcast for, I don't know, some time now.
Andrea: [00:01:39] It's been a while. Yes, but I'm excited to be here.
Carrie: [00:01:42] I'm excited to have you. And I was kind of trying to figure out when we met. I felt like it was at an ASHA convention initially.
Andrea: [00:01:51] That sounds about right. Yeah, that was a long time ago, too. I think we met through a friend of a friend, but I can't remember who the intermediary was. But thank you to whoever it was they.
Carrie: [00:02:02] Were, they were great, whoever it was. So, um, but I am so glad to have you today. And one of the things that I usually ask my podcast guests who have gotten into the field of, um, hearing sciences or audiology, do you have a backstory of choosing audiology?
Andrea: [00:02:23] I wish I had something like there was someone who was super inspirational when I was a kid, and it really wasn't that. When I was in undergrad, I wasn't quite sure what I wanted to do. I thought I wanted to do journalism, and then that wasn't for me. And I went and talked to my advisor and and she asked me what I wanted, and I said I wanted to work with something that would let me work with people that I could do psychology and something science wise. And she told me to take this intro class to speech and hearing, and that was it. I was completely hooked after that. It was that one little introductory class at University of Illinois, and I. It just made sense. It was one of those things that just clicked. And, um, and then when I started my master's program in audiology, which I didn't know if I wanted to do audiology or speech, to be honest, which probably makes sense why I do what I do, because it's not all hearing, like all audiology, and it's not really speech and language, and it kind of has psychology mixed in. And that's just the intersection that makes me happiest. I think that's where you really get to see where things come to fruition in the real world.
Carrie: [00:03:30] Yeah, yeah. No, that is great. That one person, an adviser, just said, take this class and it changed the whole trajectory for your profession. So that is awesome. And, um, yeah. So one of you kind of going into that, that research around that quality of life and your passion for that research to, uh, as it relates to cochlear implants and quality of life, you also run a lab at the university called the CHILL Lab. Can you share a little bit more about that?
Andrea: [00:04:07] Absolutely. So, um, it's called the Children and Infant Listening Lab. And so when we started it, it was all about the infants and we were studying babies. And that was really fun. Um, I loved the babies. But then I realized as my kids were getting older, the age of my participants also got a little bit older. Um, and then I got to adolescence, and it was absolute heaven, which I know nobody says that because who likes adolescence, but I actually really, really do. Um, but what we have done, we've looked at speech perception and music perception. We've looked at speech and language outcomes, and then quality of life has really been the stalwart for like the last 15 years. And really, like I said before, that's where I feel like everything kind of comes together. Um, and part of it came from what I was hearing from the parents, where the parents were telling me their children were having this issue, or they're having trouble making friends, or they didn't feel like they yeah, they just didn't feel like they were fitting in or how they were communicating. And I think all of that from getting the information from the parents and then just talking to the kids themselves, that really has changed what I look at, just really listening to them, I think that's the most important part, is learning from them what what they want or what they're experiencing helps change what I do as well.
Carrie: [00:05:27] Yeah. And I know today for the podcast, we really wanted to take a deeper dive into the role of social skills and emotion regulation and relation to children and adolescents who are deaf and hard of hearing. So how do deaf and hard of hearing children or adolescents, their social skills compare to their counterparts who have typical hearing?
Andrea: [00:05:51] Yeah, so it's been really interesting. There's not a ton of work on that. Um, in looking at their social skills, I think part of it really stems from language. And do they have the language skills to be able to communicate with their peers? And I think one of the most striking, um, pieces that I got was actually from a parent who said that their child was communicating that their best friends were always 1 to 2 years younger than they were. And so then it made me think, is that a language issue? Is it a social skills issue? Um, so a lot of the research has been trying to really disentangle what's going on with them. What we know about social skills is that the they have more difficulty making and maintaining friends. They tend to report more peer problems, like they're getting picked on more, or they're just more socially isolated or lonely. And that's kind of been what's what's been reported for the last 40 plus years. And that didn't matter if they were using hearing aids, if they were signing, what kind of residential school they were in, you know, was it general education or residential? It didn't really matter. Those were the types of things that kept coming out. So that's still the case. Even with as good as our technology is and early identification of hearing loss, we're still seeing some issues that kind of need to be teased apart, in my opinion. Yeah.
Carrie: [00:07:16] And it's interesting because like what you just said, we have early intervention and newborn hearing screening and technology, and a lot of these kids are probably graduating from like a more clinic program for their maybe speech and language skills. However, how does that translate into the real world then? Do you have anything to say about that?
Andrea: [00:07:41] I, I do, I think we prepare them really well to respond to us when we're when we're in the Audiologic booth and they're, you know, responding to questions. And it's really kind of a contrived situation. So even if they have noise, it's a really controlled and they know what to expect. They know exactly what's coming. And in speech and language testing, they can do really well on those tests, but they get all the time in the world, they can have as much time as they want, and that's not what real conversation is like. So even if they do really well in the clinic, I don't think those skills are always 100% transferring over, especially when they're communicating with people their own age versus adults who are going to fill in those gaps for them. So I don't want anyone to think that I'm saying they're doing horribly, and I don't mean that at all, but there is a little bit of a disconnect between or there can be a disconnect between how they're performing in clinic and how they're performing with their peers in day to day. Interactions.
Carrie: [00:08:44] Yeah. And does their level of auditory status impact that at all? I know you said, um, you know, as far as, like peer victimization and things like that, it really, you know, was kind of the same. But is there any evidence with that?
Andrea: [00:09:05] Do you mean like if they're deaf and signing versus using hearing aids or cochlear versus cochlear implants? Is that.
Carrie: [00:09:11] Yeah, that or like unilateral or mild versus more severe to profound.
Andrea: [00:09:17] So that's a really good question. Most of the kids in my studies are ones who are have severe to profound hearing loss, who use cochlear implants. So in our peer victimization study, we also had children who used hearing aids. So there was a broader degree of hearing, um, access for that particular study. But most of what I do is is working with children who have and adolescents with cochlear implants. Um, so is there a difference in in our study for peer victimization? There wasn't a difference. If they used hearing aids versus cochlear implants, there didn't seem to be a big difference between them. Um. I can't answer that question. I'm not trying to avoid it. I just can't answer it.
Carrie: [00:10:01] Maybe there isn't an answer for that. Um, right now, I was just curious if there there happened to be anything, you know, related to that challenge or whatever. Um, well, you know, we kind of shared about, like, the difference between clinic and then going into the real world setting. Um, and you mentioned how, um, communication is really different outside of the audiology booth. So what are some of those common challenges that you've heard from parents or from students, um, facing, you know, the real world situation for those social interactions?
Andrea: [00:10:40] So I think one of the big ones is with when we as adults are working with these children, if they're struggling, if they're if they need a moment to process that information, we are willing to be patient and wait for that. And that's not necessarily what you're going to get. So I think the timing is a big part of that, that temporal, um, access to the information and response time. So if they're taking a little bit of time to process what they've heard, especially in a noisy environment, that's going to throw off the timing of the conversation. So I think it's partly that, um, I think communication breakdowns for them to recognize the problem there, a breakdown has occurred and to know what to do about it and to do something about it. That's a three part task that they don't always do. Sometimes they just don't feel comfortable. They're worried about what other people are going to think about them, and so they're more willing just to let it slide and not get the information they need to participate in the conversation. Um, I think the other thing is opportunities for them to have to practice those skills.
Andrea: [00:11:46] So there was a a kid, he was in ninth grade, and I just remember him telling me point blank that the first five years of his life he spent going to therapy and and getting his device, he had cochlear implants and working with his audiologist and his speech language pathologist and this therapist and that therapist. And he spent all the time doing that, and he didn't spend the time in playgroups and learning how to play with others his own age and, and how to navigate the social situations with his peers. And for me, that was, you know, coming from a ninth grade boy who would have thought I'd ever say I really learned from from this ninth grade boy, but I really did, because it was such a huge aspect that we spend so much time with them in, in clinic and in therapy that they need to be kids also, and, and making sure that they're really fostering that aspect as well. I think it's important to emphasize that to parents, too. Um.
Carrie: [00:12:44] Yeah, that's a really good thing to learn from a ninth grader. I mean, that's huge to learn that. What are some. So, you know, you talk about the clinic and going to the real world, but what are some techniques or strategies that parents or educators or, you know, maybe related service providers that are working with these students in the more inclusive school environments? What could they be doing to maybe help build this in a different way?
Andrea: [00:13:20] So I think one of them is to make sure that there are those social activities with other kids their own age. And there was a mom years ago, and she said she felt like she had to be the concierge, so she would be the one that would arrange for the play dates or the Or when they got older, to go to the amusement park or go to the mall or whatever it was, because then, number one, she always knew that her kids were going to be included. And number two, she could also, um, make sure that, you know, those things were happening and that she could kind of be around in case they needed some help with those interactions. So I think making sure that they're involved in those activities, if they can be involved in some type of group, seems to be another one. Um, so that could be a sports team. It could be, um, band if they like music, you know, there are different ways that you can do that. It could be in any other type of group. Um, the other so those are things that parents can do, what clinicians can do. I know that there are certain groups, um, certain cochlear implant teams or teams for children who are deaf and hard of hearing, and they have social groups for their kids. And so they let them all get together. And that way they get to be with other children who are deaf and hard of hearing. They get to do something together, and they get to see that they're not the only ones also, but it gives them a kind of a place away from clinic that they get to practice those social skills.
Carrie: [00:14:47] Yeah, and it's such an important part of the whole person picture when they realize that they're not the only one and that they can kind of develop some positive self esteem in that way, too.
Andrea: [00:15:01] I think that's also oh, sorry, something that you see with the a lot of the kids in general education is a lot of times they don't have other peers who are deaf and hard of hearing in their class. And so having that reminder that that they aren't the only one that you can get that through those local groups. There's also lots of camps. And I know you, you have a camp, um, where you are, and I've been working in camps in Dallas and in Colorado as well. And I think that's another place not just for the kids, but also for the families to get more information on. And, and just, I don't know, learn, learn from each other. I think they learn from each other sometimes better than they learn from us, to be honest.
Carrie: [00:15:43] Yeah, well, I think that's true. No matter, um, whether they are deaf or hard of hearing or typical, um, they're going to learn from, from their peers more than they're going to learn from adults. But, you know, you're saying that and I love that you are so involved at your place as well with that social groups and connecting teens and kids together, because I that was a huge part of what I was missing, like growing up as someone that had hearing aids and going to a general or, you know, my neighborhood school, never knowing anyone else. Um, and it really impacted me, um, socially and emotionally through especially those transitional years of going, you know, trying to figure out who I am as a teenager and then thinking I'm the only one in the entire world that has to wear hearing aids and really kind of propelled me into making sure that the kids that I get to work with are connected in some way. And I feel like even if they're connected once with someone just realizing that they're not the only one one time, it could make a huge impact.
Andrea: [00:16:59] It can. And I think also with those camps, they forge those relationships. There are some kids that have gone to the Dallas camp since they were itty bitty like toddlers, and now they're in their 20s and they are still as I there are some of them and they're just still a super close knit group, you know, almost 20 years later, which is pretty amazing that they have just developed that so early. And I think it's it's that bond of having that commonality. Is that why you did that camp? Is that why you guys started the camp up there?
Carrie: [00:17:32] Yeah, I started a program more like a local program. That was a day kind of a thing or a half a day that we would meet a couple times a year, and we would bring middle school and high school kids together and do just self-advocacy, development. So our group was called Alps Now, advocacy, leadership and peer support for deaf and hard of hearing. And it's like, um, I want to say it's where the magic happens. I mean, you cannot. Replicate what happens in this group any other way, but by bringing them together and you come up with a couple of activities, but you give them the space to be who they are and connect with the others. And like you said, they make these lifelong connections. And with social media and different, you know, things like that, they stay connected. Yeah.
Andrea: [00:18:33] I agree that it is magical. I know we're not supposed to say that because in a way we're setting it up to be that way, but it just is.
Carrie: [00:18:41] It is? Yeah. And I have kids who were, um, you know, dragging their feet. They didn't want to go. And I'm like, just come one time. If you don't like it, you never have to come back. And I would say 95% of them have come back.
Andrea: [00:18:59] Yep.
Carrie: [00:19:00] So the hardest part is getting them there.
Andrea: [00:19:04] I agree I agree.
Carrie: [00:19:07] Yeah. So we talked a lot about like the adolescent phase too. But how important is it to address this early like early intervention and preschool for social skills.
Andrea: [00:19:24] So I think that's what we're looking at right now, because a lot of the research that I've done is really focused on the adolescence. Um, just because they will tell you anything you want to know or things that you don't want to know. Um, which again, is why I like them so much. And I think some of the things that we see. Are things that could be addressed really early. I think a lot of times what we do is as audiologists, we want to make sure they're getting the best signal and speech language pathologists that they have nice, clear articulation and that their language is on par. And that's great. But then that social piece doesn't always fit into the, you know, as far as those high priorities. And I think those early play groups, I think there are things that we can work on in clinic to make sure that they know how to self-advocate early on. I mean, they can tell you when their device is working versus when it's not, or if they're having trouble. I think those are things you can work on really early and teaching them to know how to interact with other people. I think Theory of Mind and some of the not not just being able to identify their own emotions, but to identify emotions in other people. And that's that's a skill that as parents, we need to talk about, too. As you know, when you're reading books or if you get mad about something to explain it and, and explain to them how you're thinking, I mean, you don't have to say I, I'm feeling mad right now, but, you know, but but I'm feeling upset and this is why. And, you know, then they can see this is how someone shows it, either in a movie or a book. Like, I think there are lots of ways that we can address it really early. Um, and there's lots of books on emotional intelligence. I think that's one of my favorite things right now to even in preschool books.
Andrea: [00:21:11] My, um, I mean, I, I vividly remember there's a book called my, My Many Colored Days by Doctor Seuss, which I didn't remember until my kids were little and someone gave them the book. And when you first read it, you think it's all about colors, but it's actually all about emotions, and it attaches the emotions to the different colors. My son read the cover off that book, and I think those are things that I mean, then that was a board book. So those are things really early to have those conversations and if they can recognize it, I think sometimes the children who are deaf and hard of hearing need to be explicitly taught some of those things, and I think those are really good avenues to do it is you can take those little opportunities. It doesn't take a lot of time, but it has a huge impact on how they interact with others, whether they're their own age or whether it's an adult. That was a really long answer. Sorry.
Carrie: [00:22:01] No, that's great, but I know that, um, you know, to add on to that, you have been doing some research kind of in that area, um, with what is it like, more like visual recognition. Recognition and emotions. Do you want to share a little bit about that?
Andrea: [00:22:20] Sure. So what's really interesting when you look at visual emotion recognition. So we show them different faces. And and there was no difference between the groups for visual emotion recognition at all. It like for accuracy or reaction time, they looked exactly the same whether, you know, for static photos. But then when we use dynamic videos and they looked at the image and they had either part of the image or all of the image, there was a difference between the groups. And what I mean by that is that the group with typical hearing, these are all adolescents. The group with typical hearing was faster and had higher accuracy when they had 80% of the video. So they didn't have all the video. They could make the decision and be accurate faster than the group with cochlear implants. So even with visual emotion recognition, they just need a tiny bit longer for the cochlear implant group to be able to get the right emotion identified. Um, for auditory emotion recognition, it's all over the place. But we included, um, kids with typical hearing, with hearing aids, and with cochlear implants. So, um, and we didn't have we need to collect a little bit more data on there. So there's a lot of variability in the deaf and hard of hearing group. But overall they aren't as good as emotion recognition at emotion recognition compared to their peers with typical hearing. And I think Monita Chatterjee has been showing the same exact thing that, um, it's just hard, especially with a cochlear implant, to pick up some of those emotion cues auditorily. And that's when everything's straightforward. But what happens when you have sarcasm and you have a mismatch between what's going on visually and auditorily? And I don't think we've actually nailed that down for how well they do as good at recognizing things like that. When there is a mismatch, I think that's the next thing we need to look at.
Carrie: [00:24:23] Yeah, which kind of makes sense when you think about, um, cochlear implants aren't as good as giving a lot of low frequency information. And when you think about emotions and inflection of people's voices, right, that it would be harder to recognize that, especially if it's a nuance and somebody's being sarcastic and their face doesn't match what they're meaning to say. Right?
Andrea: [00:24:51] Right. And some I mean, there are some people with typical hearing who aren't savvy at that either. They miss it all the time. So you have to pay attention to that too. But I think that's really important for kids who are in middle school and high school because sarcasm and making jokes, I mean, that's that's the bread and butter for that age group, right? I mean, whether they're talking to their parents or to their friends, there's always jokes or sarcasm going on. And so it's really important for them to know how to navigate that as well.
Carrie: [00:25:23] Yeah. Which kind of is a great segue into um, I know you've done some work and some, uh, research in the area of like, bullying and that kind of, uh, you know, written about it. Is there a higher incidence of, um, bullying or peer victimization in this population when compared to, um, typical hearing or other populations?
Andrea: [00:25:54] There. There is. So in the general population, it's about a third will report that they've been picked on at least once. Um, when we look at special populations. So any kids with Exceptionalities, regardless of what that exceptionality is, it's somewhere between about 47 and 70%, depending on the group that's included. Um, and so we ask the same exact questions of children who are deaf and hard of hearing, who used hearing aids or cochlear implants and half of them. So 50% of them said that they had been picked on at least once. So that's compared to it was 28% in the typical hearing population. And the way that they get picked on the most is they they're excluded. They're socially excluded. I should say they feel socially excluded. Now, it doesn't really matter if they were or not, but it's their perception because it's the same sense for them. Right? Um, so yeah. So, uh, it was 20 I think it was five, five times the rate of feeling socially excluded in the group with cochlear implants and hearing aids compared to typical hearing. So 25 versus 5% or something like that. It was crazy. It was it was I was unbelievable how high that was.
Carrie: [00:27:13] Yeah. Which is really important for providers for parents to to recognize that. So how would we as professionals really, um, capture that or make sure that, you know, you have an adolescent coming in and you're doing their annual checkup and then you oh, everything looks great and you have them leave or what else? What else should we be doing?
Andrea: [00:27:44] Well, I'm nosy, so I'm always going to ask about, you know, do you have friends? Do you, do you get along with people? Do you have a boyfriend? Girlfriend? You know, but that's kind of just my personality. I don't think we have to do it from a nosy standpoint. Um, but I think those are questions you can ask. Um, you know, how how are things going at school? Do you have friends? I think those are really valid questions to ask. And if they say they don't have friends, then that's when you can maybe probe a little bit more like, oh, like, you know, are you getting picked on? Is everything okay? I think there's an easy way to do that. And actually, there was a group you were involved with, right? With Carol Flexer and Jane Madell years ago. Um, I remember I think it was Kris English.
Carrie: [00:28:30] Kris English. That's right. Yeah, yeah. And we looked at like and actually had like a bullying questionnaire that you could use in the clinic just to ask some of those questions. And if, like you said, if they said, you know, no, I don't really have any friends. And here's a follow up question, how can you kind of expand and get more information too.
Andrea: [00:28:52] Yes. And I think it's also really important to know, um, that one of the things that came up in our research, we would have the kids complete the surveys on an iPad and sometimes the parents would be around. And some I mean, of course we got consent. Don't worry. Sometimes the parents would, you know, look over their kid's shoulder to see what's happening. And one I remember there was this one parent who came and said, she said that she has lots of friends and that's not true. She only has 1 to 2 friends and the others are acquaintances. And I think that's something else that we need to kind of pull apart. Is are these true friends? Do they have true friends or are they just acquaintances? And do they have someone to kind of share their inner thoughts with, to share time with, to do things after school? And I think sometimes you can dig a little bit more into that, but I think it's more than just do you have friends? I think kind of digging into are these is it a true friendship or not? Is it and is it bi directional? Right.
Andrea: [00:29:51] Do you want to be with each other or not?
Carrie: [00:29:54] Yeah, exactly. Well, and I think that's a bigger like conversation in the general like population for this, this next generation, because they're so involved with their phone and texting and Snapchat. So yeah, you have how many people following you or snapping you. But you could say I have 400 friends, but you haven't talked to anybody in real life.
Andrea: [00:30:22] Oh I yes, yes. I mean it's the same thing for us old people on Facebook, right? Um, I'm friends with lots of people on Facebook, but I'm not really friends with them. I mean, I am, but some of them are really acquaintances at this point. I'm friends with a lot of them. Don't be offended if we're friends on Facebook.
Carrie: [00:30:42] You're going to get all these un friends in a minute.
Andrea: [00:30:44] I know, please don't unfriend me.
Carrie: [00:30:48] Oh, but I think, you know, I when you ask that question in a clinic, it makes.
Andrea: [00:30:57] Yeah. But I but I think those are questions that we can ask. And it doesn't have to be like it's a prying. I mean, these are kids. These are adolescents that you're spending a lot of time with. You know them sometimes they know you and they're more willing to confide in you than maybe there are their parents, because sometimes the parents can become kind of helicoptering and they're so concerned and they, um, push their concerns onto what they're they think their child is thinking, too, right? They, um, what is that called? Do you know? Oh, there. Anyways, so they think that their kids have the same exact concerns that they do, and that's not necessarily the case. So sometimes I think the kids will hold in and not tell the parents if something's going on, but they're more willing to tell you, kind of as a trusted outside adult who is safe to tell things to.
Carrie: [00:31:47] Yeah. And sometimes they might not want the parents to worry or go into the school and maybe make it a bigger deal. I mean, there's probably a lot of that that might be going on as well.
Andrea: [00:32:04] Exactly, projecting. That's a word I wanted.
Carrie: [00:32:07] Yes, projecting. Thank you. I was thinking like executive functioning, but that wasn't it either. Oh, so it's been a long week, right? So we're getting through. Um, but just I guess, you know, we've talked a lot about, like, social skills and and bullying and you know starting early, but are there any other specific strategies or supports that you can kind of think about that we may want to be? Teaching our students or clients.
Andrea: [00:32:47] Um. I do think making sure that they're they're involved in something. Um, when you're on a team and this is kind of across the board, whether it has nothing to do with hearing loss. But basically, if you're on a team or you have, um, some type of group, intramural group, whether it's with the school or outside the school, that kind of gives them a little family where those kids are going to have their back and they have each other's back. And that's something that's been shown in the friendship literature. Um, for kids, with typical hearing in the general population. And I think the same is true for these kids. Um, I do think that's, you know, I expect it to be better in the future, kind of as we go forward, as we have earlier identification, we have earlier fitting of devices and better communication and a lot of these, these kids. So I think kind of the next generation, I would expect that to be better. I think the other thing is this generation, um, is more accepting and more inclusive than I think some past generations. And I think that's something that's going to bode well for these kids, that those things that were viewed as huge differences, you know, when you and I were growing up aren't necessarily as big of a deal. And I think, you know, making them aware. You talked about self-advocacy before, um, having them where they're not necessarily hiding their devices and they're proud of them and they can talk about them. I think that openness really opens up a lot of avenues for them as well.
Carrie: [00:34:25] Yeah. And like you said, that can start in preschool with just like reporting whether or not their devices are on or not working and then building those, you know, developmental self-advocacy skills, which is going to help with their self-perception and identity of who they are and hopefully help with the lesser peer victimization, because they're going to be very confident.
Andrea: [00:34:52] Exactly, and knowing how to describe their hearing loss or their hearing aid or cochlear implant and how it works. You know, these are like glasses for my ears. I think there are things that we can give them the language for, to help them kind of figure out how they want to handle that as well. But it's going to differ. Just like everyone, you know, adults are different. All kids are different too. And so trying to match that strategy with who the child actually is from a temperament standpoint is important to do as well.
Carrie: [00:35:23] Yeah, but what a great skill to develop and be able to role play. Or just like you said, give them some of that language that they would be able to build within themselves and then personalize it as they grow.
Andrea: [00:35:37] Right, absolutely.
Carrie: [00:35:40] So is there anything that I didn't ask you that you were wanting me to ask you.
Andrea: [00:35:50] Oh, I feel I like how this conversation went. It was a little organic and how it evolved, but I feel like this was covering exactly what we had talked about before is just giving a little bit of a shout out to looking at things beyond just speech, language and hearing and how they actually implement those skills in the real world. Um, I think that's just important for us to think about.
Carrie: [00:36:14] Yeah. And I just applaud your work and your passion in this area because it really is the end result, right? We as human beings, we want to be able to interact and have meaningful relationships with other people. And if we're not addressing this, um, and helping support this, then it's going to the outcome isn't going to be the same. So to be able to just, I don't know, have a way to really strategically look at it and then, um, implement it into the clinic setting into the school setting is really important for us. I children who are deaf and hard of hearing because they need that extra support in social and communication a lot of times.
Andrea: [00:37:05] They do, they do. And I think we're the right people to help. But I think it's also important to get the parents involved and sometimes the siblings too. The siblings know a lot more than we give them credit for so yeah.
Andrea: [00:37:17] They're a big key to this as well.
Carrie: [00:37:20] They are. And just to kind of wrap up, are there any like specific resources that you would recommend or networks that you would recommend? I know you talked a little bit about your camp and things like that, but anything that you can think of that people might want to look into.
Andrea: [00:37:41] Sure. So there are camps all over the United States? I'm sure there are around the world too. I just haven't looked into the global global camps. But I think looking into camps is one thing. Looking into local resources for support groups. The Dallas Hearing Foundation, for example, has a teen squad that they get together. And I know you you mentioned that that you have one up in Columbus as well. Um, I think there's also some websites that are really helpful. The supporting success for kids with hearing loss is and I know I'm sure you've talked about that a million times. Um, and there are websites like that I think just provide great resources for the families so they can kind of get what they need and connect with others. There's also lots of groups on Facebook for the parents, and sometimes there's also ones on Reddit. I haven't looked at those in detail, but I think there's good information there as well. But, um, I think pretty much anything online, lots of social media platforms will have different resources for the families.
Carrie: [00:38:48] Yeah, well, Andrea, I thought this was an incredible conversation and a very important conversation to have, um, on the Empower Audiology podcast. And I just want you to I want to thank you for being an incredible guest today. And it was an amazing conversation.
Andrea: [00:39:06] Thank you. It was fun connecting with you, too.
Carrie: [00:39:09] All right. Thank you, listeners, for listening to the Empower Audiology podcast. If you like this, please give a five star review and share it with, um, those who may also benefit from this conversation today. Thank you.
Announcer: [00:39:25] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 64 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Okay, today I have with me a friend and colleague, Dr. Andrea Warner-Czyz, and she is an associate professor in the Department of Speech, Language and Hearing in the School of Behavioral and Brain Sciences at the University of Texas in Dallas. Her research investigates communication and quality of life in children and adolescents who are deaf and hard of hearing, and use cochlear implants. Her primary, um professional goal centers on a whole person approach drawing and speech language, pathology, psychology, and audiology to develop data driven recommendations to improve social well-being in patients who are deaf and hard of hearing. So, Andrea, welcome to the podcast.
Andrea: [00:01:29] Thanks so much for having me.
Carrie: [00:01:31] I'm excited. I know we've been trying to coordinate our schedules for this podcast for, I don't know, some time now.
Andrea: [00:01:39] It's been a while. Yes, but I'm excited to be here.
Carrie: [00:01:42] I'm excited to have you. And I was kind of trying to figure out when we met. I felt like it was at an ASHA convention initially.
Andrea: [00:01:51] That sounds about right. Yeah, that was a long time ago, too. I think we met through a friend of a friend, but I can't remember who the intermediary was. But thank you to whoever it was they.
Carrie: [00:02:02] Were, they were great, whoever it was. So, um, but I am so glad to have you today. And one of the things that I usually ask my podcast guests who have gotten into the field of, um, hearing sciences or audiology, do you have a backstory of choosing audiology?
Andrea: [00:02:23] I wish I had something like there was someone who was super inspirational when I was a kid, and it really wasn't that. When I was in undergrad, I wasn't quite sure what I wanted to do. I thought I wanted to do journalism, and then that wasn't for me. And I went and talked to my advisor and and she asked me what I wanted, and I said I wanted to work with something that would let me work with people that I could do psychology and something science wise. And she told me to take this intro class to speech and hearing, and that was it. I was completely hooked after that. It was that one little introductory class at University of Illinois, and I. It just made sense. It was one of those things that just clicked. And, um, and then when I started my master's program in audiology, which I didn't know if I wanted to do audiology or speech, to be honest, which probably makes sense why I do what I do, because it's not all hearing, like all audiology, and it's not really speech and language, and it kind of has psychology mixed in. And that's just the intersection that makes me happiest. I think that's where you really get to see where things come to fruition in the real world.
Carrie: [00:03:30] Yeah, yeah. No, that is great. That one person, an adviser, just said, take this class and it changed the whole trajectory for your profession. So that is awesome. And, um, yeah. So one of you kind of going into that, that research around that quality of life and your passion for that research to, uh, as it relates to cochlear implants and quality of life, you also run a lab at the university called the CHILL Lab. Can you share a little bit more about that?
Andrea: [00:04:07] Absolutely. So, um, it's called the Children and Infant Listening Lab. And so when we started it, it was all about the infants and we were studying babies. And that was really fun. Um, I loved the babies. But then I realized as my kids were getting older, the age of my participants also got a little bit older. Um, and then I got to adolescence, and it was absolute heaven, which I know nobody says that because who likes adolescence, but I actually really, really do. Um, but what we have done, we've looked at speech perception and music perception. We've looked at speech and language outcomes, and then quality of life has really been the stalwart for like the last 15 years. And really, like I said before, that's where I feel like everything kind of comes together. Um, and part of it came from what I was hearing from the parents, where the parents were telling me their children were having this issue, or they're having trouble making friends, or they didn't feel like they yeah, they just didn't feel like they were fitting in or how they were communicating. And I think all of that from getting the information from the parents and then just talking to the kids themselves, that really has changed what I look at, just really listening to them, I think that's the most important part, is learning from them what what they want or what they're experiencing helps change what I do as well.
Carrie: [00:05:27] Yeah. And I know today for the podcast, we really wanted to take a deeper dive into the role of social skills and emotion regulation and relation to children and adolescents who are deaf and hard of hearing. So how do deaf and hard of hearing children or adolescents, their social skills compare to their counterparts who have typical hearing?
Andrea: [00:05:51] Yeah, so it's been really interesting. There's not a ton of work on that. Um, in looking at their social skills, I think part of it really stems from language. And do they have the language skills to be able to communicate with their peers? And I think one of the most striking, um, pieces that I got was actually from a parent who said that their child was communicating that their best friends were always 1 to 2 years younger than they were. And so then it made me think, is that a language issue? Is it a social skills issue? Um, so a lot of the research has been trying to really disentangle what's going on with them. What we know about social skills is that the they have more difficulty making and maintaining friends. They tend to report more peer problems, like they're getting picked on more, or they're just more socially isolated or lonely. And that's kind of been what's what's been reported for the last 40 plus years. And that didn't matter if they were using hearing aids, if they were signing, what kind of residential school they were in, you know, was it general education or residential? It didn't really matter. Those were the types of things that kept coming out. So that's still the case. Even with as good as our technology is and early identification of hearing loss, we're still seeing some issues that kind of need to be teased apart, in my opinion. Yeah.
Carrie: [00:07:16] And it's interesting because like what you just said, we have early intervention and newborn hearing screening and technology, and a lot of these kids are probably graduating from like a more clinic program for their maybe speech and language skills. However, how does that translate into the real world then? Do you have anything to say about that?
Andrea: [00:07:41] I, I do, I think we prepare them really well to respond to us when we're when we're in the Audiologic booth and they're, you know, responding to questions. And it's really kind of a contrived situation. So even if they have noise, it's a really controlled and they know what to expect. They know exactly what's coming. And in speech and language testing, they can do really well on those tests, but they get all the time in the world, they can have as much time as they want, and that's not what real conversation is like. So even if they do really well in the clinic, I don't think those skills are always 100% transferring over, especially when they're communicating with people their own age versus adults who are going to fill in those gaps for them. So I don't want anyone to think that I'm saying they're doing horribly, and I don't mean that at all, but there is a little bit of a disconnect between or there can be a disconnect between how they're performing in clinic and how they're performing with their peers in day to day. Interactions.
Carrie: [00:08:44] Yeah. And does their level of auditory status impact that at all? I know you said, um, you know, as far as, like peer victimization and things like that, it really, you know, was kind of the same. But is there any evidence with that?
Andrea: [00:09:05] Do you mean like if they're deaf and signing versus using hearing aids or cochlear versus cochlear implants? Is that.
Carrie: [00:09:11] Yeah, that or like unilateral or mild versus more severe to profound.
Andrea: [00:09:17] So that's a really good question. Most of the kids in my studies are ones who are have severe to profound hearing loss, who use cochlear implants. So in our peer victimization study, we also had children who used hearing aids. So there was a broader degree of hearing, um, access for that particular study. But most of what I do is is working with children who have and adolescents with cochlear implants. Um, so is there a difference in in our study for peer victimization? There wasn't a difference. If they used hearing aids versus cochlear implants, there didn't seem to be a big difference between them. Um. I can't answer that question. I'm not trying to avoid it. I just can't answer it.
Carrie: [00:10:01] Maybe there isn't an answer for that. Um, right now, I was just curious if there there happened to be anything, you know, related to that challenge or whatever. Um, well, you know, we kind of shared about, like, the difference between clinic and then going into the real world setting. Um, and you mentioned how, um, communication is really different outside of the audiology booth. So what are some of those common challenges that you've heard from parents or from students, um, facing, you know, the real world situation for those social interactions?
Andrea: [00:10:40] So I think one of the big ones is with when we as adults are working with these children, if they're struggling, if they're if they need a moment to process that information, we are willing to be patient and wait for that. And that's not necessarily what you're going to get. So I think the timing is a big part of that, that temporal, um, access to the information and response time. So if they're taking a little bit of time to process what they've heard, especially in a noisy environment, that's going to throw off the timing of the conversation. So I think it's partly that, um, I think communication breakdowns for them to recognize the problem there, a breakdown has occurred and to know what to do about it and to do something about it. That's a three part task that they don't always do. Sometimes they just don't feel comfortable. They're worried about what other people are going to think about them, and so they're more willing just to let it slide and not get the information they need to participate in the conversation. Um, I think the other thing is opportunities for them to have to practice those skills.
Andrea: [00:11:46] So there was a a kid, he was in ninth grade, and I just remember him telling me point blank that the first five years of his life he spent going to therapy and and getting his device, he had cochlear implants and working with his audiologist and his speech language pathologist and this therapist and that therapist. And he spent all the time doing that, and he didn't spend the time in playgroups and learning how to play with others his own age and, and how to navigate the social situations with his peers. And for me, that was, you know, coming from a ninth grade boy who would have thought I'd ever say I really learned from from this ninth grade boy, but I really did, because it was such a huge aspect that we spend so much time with them in, in clinic and in therapy that they need to be kids also, and, and making sure that they're really fostering that aspect as well. I think it's important to emphasize that to parents, too. Um.
Carrie: [00:12:44] Yeah, that's a really good thing to learn from a ninth grader. I mean, that's huge to learn that. What are some. So, you know, you talk about the clinic and going to the real world, but what are some techniques or strategies that parents or educators or, you know, maybe related service providers that are working with these students in the more inclusive school environments? What could they be doing to maybe help build this in a different way?
Andrea: [00:13:20] So I think one of them is to make sure that there are those social activities with other kids their own age. And there was a mom years ago, and she said she felt like she had to be the concierge, so she would be the one that would arrange for the play dates or the Or when they got older, to go to the amusement park or go to the mall or whatever it was, because then, number one, she always knew that her kids were going to be included. And number two, she could also, um, make sure that, you know, those things were happening and that she could kind of be around in case they needed some help with those interactions. So I think making sure that they're involved in those activities, if they can be involved in some type of group, seems to be another one. Um, so that could be a sports team. It could be, um, band if they like music, you know, there are different ways that you can do that. It could be in any other type of group. Um, the other so those are things that parents can do, what clinicians can do. I know that there are certain groups, um, certain cochlear implant teams or teams for children who are deaf and hard of hearing, and they have social groups for their kids. And so they let them all get together. And that way they get to be with other children who are deaf and hard of hearing. They get to do something together, and they get to see that they're not the only ones also, but it gives them a kind of a place away from clinic that they get to practice those social skills.
Carrie: [00:14:47] Yeah, and it's such an important part of the whole person picture when they realize that they're not the only one and that they can kind of develop some positive self esteem in that way, too.
Andrea: [00:15:01] I think that's also oh, sorry, something that you see with the a lot of the kids in general education is a lot of times they don't have other peers who are deaf and hard of hearing in their class. And so having that reminder that that they aren't the only one that you can get that through those local groups. There's also lots of camps. And I know you, you have a camp, um, where you are, and I've been working in camps in Dallas and in Colorado as well. And I think that's another place not just for the kids, but also for the families to get more information on. And, and just, I don't know, learn, learn from each other. I think they learn from each other sometimes better than they learn from us, to be honest.
Carrie: [00:15:43] Yeah, well, I think that's true. No matter, um, whether they are deaf or hard of hearing or typical, um, they're going to learn from, from their peers more than they're going to learn from adults. But, you know, you're saying that and I love that you are so involved at your place as well with that social groups and connecting teens and kids together, because I that was a huge part of what I was missing, like growing up as someone that had hearing aids and going to a general or, you know, my neighborhood school, never knowing anyone else. Um, and it really impacted me, um, socially and emotionally through especially those transitional years of going, you know, trying to figure out who I am as a teenager and then thinking I'm the only one in the entire world that has to wear hearing aids and really kind of propelled me into making sure that the kids that I get to work with are connected in some way. And I feel like even if they're connected once with someone just realizing that they're not the only one one time, it could make a huge impact.
Andrea: [00:16:59] It can. And I think also with those camps, they forge those relationships. There are some kids that have gone to the Dallas camp since they were itty bitty like toddlers, and now they're in their 20s and they are still as I there are some of them and they're just still a super close knit group, you know, almost 20 years later, which is pretty amazing that they have just developed that so early. And I think it's it's that bond of having that commonality. Is that why you did that camp? Is that why you guys started the camp up there?
Carrie: [00:17:32] Yeah, I started a program more like a local program. That was a day kind of a thing or a half a day that we would meet a couple times a year, and we would bring middle school and high school kids together and do just self-advocacy, development. So our group was called Alps Now, advocacy, leadership and peer support for deaf and hard of hearing. And it's like, um, I want to say it's where the magic happens. I mean, you cannot. Replicate what happens in this group any other way, but by bringing them together and you come up with a couple of activities, but you give them the space to be who they are and connect with the others. And like you said, they make these lifelong connections. And with social media and different, you know, things like that, they stay connected. Yeah.
Andrea: [00:18:33] I agree that it is magical. I know we're not supposed to say that because in a way we're setting it up to be that way, but it just is.
Carrie: [00:18:41] It is? Yeah. And I have kids who were, um, you know, dragging their feet. They didn't want to go. And I'm like, just come one time. If you don't like it, you never have to come back. And I would say 95% of them have come back.
Andrea: [00:18:59] Yep.
Carrie: [00:19:00] So the hardest part is getting them there.
Andrea: [00:19:04] I agree I agree.
Carrie: [00:19:07] Yeah. So we talked a lot about like the adolescent phase too. But how important is it to address this early like early intervention and preschool for social skills.
Andrea: [00:19:24] So I think that's what we're looking at right now, because a lot of the research that I've done is really focused on the adolescence. Um, just because they will tell you anything you want to know or things that you don't want to know. Um, which again, is why I like them so much. And I think some of the things that we see. Are things that could be addressed really early. I think a lot of times what we do is as audiologists, we want to make sure they're getting the best signal and speech language pathologists that they have nice, clear articulation and that their language is on par. And that's great. But then that social piece doesn't always fit into the, you know, as far as those high priorities. And I think those early play groups, I think there are things that we can work on in clinic to make sure that they know how to self-advocate early on. I mean, they can tell you when their device is working versus when it's not, or if they're having trouble. I think those are things you can work on really early and teaching them to know how to interact with other people. I think Theory of Mind and some of the not not just being able to identify their own emotions, but to identify emotions in other people. And that's that's a skill that as parents, we need to talk about, too. As you know, when you're reading books or if you get mad about something to explain it and, and explain to them how you're thinking, I mean, you don't have to say I, I'm feeling mad right now, but, you know, but but I'm feeling upset and this is why. And, you know, then they can see this is how someone shows it, either in a movie or a book. Like, I think there are lots of ways that we can address it really early. Um, and there's lots of books on emotional intelligence. I think that's one of my favorite things right now to even in preschool books.
Andrea: [00:21:11] My, um, I mean, I, I vividly remember there's a book called my, My Many Colored Days by Doctor Seuss, which I didn't remember until my kids were little and someone gave them the book. And when you first read it, you think it's all about colors, but it's actually all about emotions, and it attaches the emotions to the different colors. My son read the cover off that book, and I think those are things that I mean, then that was a board book. So those are things really early to have those conversations and if they can recognize it, I think sometimes the children who are deaf and hard of hearing need to be explicitly taught some of those things, and I think those are really good avenues to do it is you can take those little opportunities. It doesn't take a lot of time, but it has a huge impact on how they interact with others, whether they're their own age or whether it's an adult. That was a really long answer. Sorry.
Carrie: [00:22:01] No, that's great, but I know that, um, you know, to add on to that, you have been doing some research kind of in that area, um, with what is it like, more like visual recognition. Recognition and emotions. Do you want to share a little bit about that?
Andrea: [00:22:20] Sure. So what's really interesting when you look at visual emotion recognition. So we show them different faces. And and there was no difference between the groups for visual emotion recognition at all. It like for accuracy or reaction time, they looked exactly the same whether, you know, for static photos. But then when we use dynamic videos and they looked at the image and they had either part of the image or all of the image, there was a difference between the groups. And what I mean by that is that the group with typical hearing, these are all adolescents. The group with typical hearing was faster and had higher accuracy when they had 80% of the video. So they didn't have all the video. They could make the decision and be accurate faster than the group with cochlear implants. So even with visual emotion recognition, they just need a tiny bit longer for the cochlear implant group to be able to get the right emotion identified. Um, for auditory emotion recognition, it's all over the place. But we included, um, kids with typical hearing, with hearing aids, and with cochlear implants. So, um, and we didn't have we need to collect a little bit more data on there. So there's a lot of variability in the deaf and hard of hearing group. But overall they aren't as good as emotion recognition at emotion recognition compared to their peers with typical hearing. And I think Monita Chatterjee has been showing the same exact thing that, um, it's just hard, especially with a cochlear implant, to pick up some of those emotion cues auditorily. And that's when everything's straightforward. But what happens when you have sarcasm and you have a mismatch between what's going on visually and auditorily? And I don't think we've actually nailed that down for how well they do as good at recognizing things like that. When there is a mismatch, I think that's the next thing we need to look at.
Carrie: [00:24:23] Yeah, which kind of makes sense when you think about, um, cochlear implants aren't as good as giving a lot of low frequency information. And when you think about emotions and inflection of people's voices, right, that it would be harder to recognize that, especially if it's a nuance and somebody's being sarcastic and their face doesn't match what they're meaning to say. Right?
Andrea: [00:24:51] Right. And some I mean, there are some people with typical hearing who aren't savvy at that either. They miss it all the time. So you have to pay attention to that too. But I think that's really important for kids who are in middle school and high school because sarcasm and making jokes, I mean, that's that's the bread and butter for that age group, right? I mean, whether they're talking to their parents or to their friends, there's always jokes or sarcasm going on. And so it's really important for them to know how to navigate that as well.
Carrie: [00:25:23] Yeah. Which kind of is a great segue into um, I know you've done some work and some, uh, research in the area of like, bullying and that kind of, uh, you know, written about it. Is there a higher incidence of, um, bullying or peer victimization in this population when compared to, um, typical hearing or other populations?
Andrea: [00:25:54] There. There is. So in the general population, it's about a third will report that they've been picked on at least once. Um, when we look at special populations. So any kids with Exceptionalities, regardless of what that exceptionality is, it's somewhere between about 47 and 70%, depending on the group that's included. Um, and so we ask the same exact questions of children who are deaf and hard of hearing, who used hearing aids or cochlear implants and half of them. So 50% of them said that they had been picked on at least once. So that's compared to it was 28% in the typical hearing population. And the way that they get picked on the most is they they're excluded. They're socially excluded. I should say they feel socially excluded. Now, it doesn't really matter if they were or not, but it's their perception because it's the same sense for them. Right? Um, so yeah. So, uh, it was 20 I think it was five, five times the rate of feeling socially excluded in the group with cochlear implants and hearing aids compared to typical hearing. So 25 versus 5% or something like that. It was crazy. It was it was I was unbelievable how high that was.
Carrie: [00:27:13] Yeah. Which is really important for providers for parents to to recognize that. So how would we as professionals really, um, capture that or make sure that, you know, you have an adolescent coming in and you're doing their annual checkup and then you oh, everything looks great and you have them leave or what else? What else should we be doing?
Andrea: [00:27:44] Well, I'm nosy, so I'm always going to ask about, you know, do you have friends? Do you, do you get along with people? Do you have a boyfriend? Girlfriend? You know, but that's kind of just my personality. I don't think we have to do it from a nosy standpoint. Um, but I think those are questions you can ask. Um, you know, how how are things going at school? Do you have friends? I think those are really valid questions to ask. And if they say they don't have friends, then that's when you can maybe probe a little bit more like, oh, like, you know, are you getting picked on? Is everything okay? I think there's an easy way to do that. And actually, there was a group you were involved with, right? With Carol Flexer and Jane Madell years ago. Um, I remember I think it was Kris English.
Carrie: [00:28:30] Kris English. That's right. Yeah, yeah. And we looked at like and actually had like a bullying questionnaire that you could use in the clinic just to ask some of those questions. And if, like you said, if they said, you know, no, I don't really have any friends. And here's a follow up question, how can you kind of expand and get more information too.
Andrea: [00:28:52] Yes. And I think it's also really important to know, um, that one of the things that came up in our research, we would have the kids complete the surveys on an iPad and sometimes the parents would be around. And some I mean, of course we got consent. Don't worry. Sometimes the parents would, you know, look over their kid's shoulder to see what's happening. And one I remember there was this one parent who came and said, she said that she has lots of friends and that's not true. She only has 1 to 2 friends and the others are acquaintances. And I think that's something else that we need to kind of pull apart. Is are these true friends? Do they have true friends or are they just acquaintances? And do they have someone to kind of share their inner thoughts with, to share time with, to do things after school? And I think sometimes you can dig a little bit more into that, but I think it's more than just do you have friends? I think kind of digging into are these is it a true friendship or not? Is it and is it bi directional? Right.
Andrea: [00:29:51] Do you want to be with each other or not?
Carrie: [00:29:54] Yeah, exactly. Well, and I think that's a bigger like conversation in the general like population for this, this next generation, because they're so involved with their phone and texting and Snapchat. So yeah, you have how many people following you or snapping you. But you could say I have 400 friends, but you haven't talked to anybody in real life.
Andrea: [00:30:22] Oh I yes, yes. I mean it's the same thing for us old people on Facebook, right? Um, I'm friends with lots of people on Facebook, but I'm not really friends with them. I mean, I am, but some of them are really acquaintances at this point. I'm friends with a lot of them. Don't be offended if we're friends on Facebook.
Carrie: [00:30:42] You're going to get all these un friends in a minute.
Andrea: [00:30:44] I know, please don't unfriend me.
Carrie: [00:30:48] Oh, but I think, you know, I when you ask that question in a clinic, it makes.
Andrea: [00:30:57] Yeah. But I but I think those are questions that we can ask. And it doesn't have to be like it's a prying. I mean, these are kids. These are adolescents that you're spending a lot of time with. You know them sometimes they know you and they're more willing to confide in you than maybe there are their parents, because sometimes the parents can become kind of helicoptering and they're so concerned and they, um, push their concerns onto what they're they think their child is thinking, too, right? They, um, what is that called? Do you know? Oh, there. Anyways, so they think that their kids have the same exact concerns that they do, and that's not necessarily the case. So sometimes I think the kids will hold in and not tell the parents if something's going on, but they're more willing to tell you, kind of as a trusted outside adult who is safe to tell things to.
Carrie: [00:31:47] Yeah. And sometimes they might not want the parents to worry or go into the school and maybe make it a bigger deal. I mean, there's probably a lot of that that might be going on as well.
Andrea: [00:32:04] Exactly, projecting. That's a word I wanted.
Carrie: [00:32:07] Yes, projecting. Thank you. I was thinking like executive functioning, but that wasn't it either. Oh, so it's been a long week, right? So we're getting through. Um, but just I guess, you know, we've talked a lot about, like, social skills and and bullying and you know starting early, but are there any other specific strategies or supports that you can kind of think about that we may want to be? Teaching our students or clients.
Andrea: [00:32:47] Um. I do think making sure that they're they're involved in something. Um, when you're on a team and this is kind of across the board, whether it has nothing to do with hearing loss. But basically, if you're on a team or you have, um, some type of group, intramural group, whether it's with the school or outside the school, that kind of gives them a little family where those kids are going to have their back and they have each other's back. And that's something that's been shown in the friendship literature. Um, for kids, with typical hearing in the general population. And I think the same is true for these kids. Um, I do think that's, you know, I expect it to be better in the future, kind of as we go forward, as we have earlier identification, we have earlier fitting of devices and better communication and a lot of these, these kids. So I think kind of the next generation, I would expect that to be better. I think the other thing is this generation, um, is more accepting and more inclusive than I think some past generations. And I think that's something that's going to bode well for these kids, that those things that were viewed as huge differences, you know, when you and I were growing up aren't necessarily as big of a deal. And I think, you know, making them aware. You talked about self-advocacy before, um, having them where they're not necessarily hiding their devices and they're proud of them and they can talk about them. I think that openness really opens up a lot of avenues for them as well.
Carrie: [00:34:25] Yeah. And like you said, that can start in preschool with just like reporting whether or not their devices are on or not working and then building those, you know, developmental self-advocacy skills, which is going to help with their self-perception and identity of who they are and hopefully help with the lesser peer victimization, because they're going to be very confident.
Andrea: [00:34:52] Exactly, and knowing how to describe their hearing loss or their hearing aid or cochlear implant and how it works. You know, these are like glasses for my ears. I think there are things that we can give them the language for, to help them kind of figure out how they want to handle that as well. But it's going to differ. Just like everyone, you know, adults are different. All kids are different too. And so trying to match that strategy with who the child actually is from a temperament standpoint is important to do as well.
Carrie: [00:35:23] Yeah, but what a great skill to develop and be able to role play. Or just like you said, give them some of that language that they would be able to build within themselves and then personalize it as they grow.
Andrea: [00:35:37] Right, absolutely.
Carrie: [00:35:40] So is there anything that I didn't ask you that you were wanting me to ask you.
Andrea: [00:35:50] Oh, I feel I like how this conversation went. It was a little organic and how it evolved, but I feel like this was covering exactly what we had talked about before is just giving a little bit of a shout out to looking at things beyond just speech, language and hearing and how they actually implement those skills in the real world. Um, I think that's just important for us to think about.
Carrie: [00:36:14] Yeah. And I just applaud your work and your passion in this area because it really is the end result, right? We as human beings, we want to be able to interact and have meaningful relationships with other people. And if we're not addressing this, um, and helping support this, then it's going to the outcome isn't going to be the same. So to be able to just, I don't know, have a way to really strategically look at it and then, um, implement it into the clinic setting into the school setting is really important for us. I children who are deaf and hard of hearing because they need that extra support in social and communication a lot of times.
Andrea: [00:37:05] They do, they do. And I think we're the right people to help. But I think it's also important to get the parents involved and sometimes the siblings too. The siblings know a lot more than we give them credit for so yeah.
Andrea: [00:37:17] They're a big key to this as well.
Carrie: [00:37:20] They are. And just to kind of wrap up, are there any like specific resources that you would recommend or networks that you would recommend? I know you talked a little bit about your camp and things like that, but anything that you can think of that people might want to look into.
Andrea: [00:37:41] Sure. So there are camps all over the United States? I'm sure there are around the world too. I just haven't looked into the global global camps. But I think looking into camps is one thing. Looking into local resources for support groups. The Dallas Hearing Foundation, for example, has a teen squad that they get together. And I know you you mentioned that that you have one up in Columbus as well. Um, I think there's also some websites that are really helpful. The supporting success for kids with hearing loss is and I know I'm sure you've talked about that a million times. Um, and there are websites like that I think just provide great resources for the families so they can kind of get what they need and connect with others. There's also lots of groups on Facebook for the parents, and sometimes there's also ones on Reddit. I haven't looked at those in detail, but I think there's good information there as well. But, um, I think pretty much anything online, lots of social media platforms will have different resources for the families.
Carrie: [00:38:48] Yeah, well, Andrea, I thought this was an incredible conversation and a very important conversation to have, um, on the Empower Audiology podcast. And I just want you to I want to thank you for being an incredible guest today. And it was an amazing conversation.
Andrea: [00:39:06] Thank you. It was fun connecting with you, too.
Carrie: [00:39:09] All right. Thank you, listeners, for listening to the Empower Audiology podcast. If you like this, please give a five star review and share it with, um, those who may also benefit from this conversation today. Thank you.
Announcer: [00:39:25] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 63: empowEAR Audiology - Dr. Kari Morgenstein
Announcer: [00:00:00] Welcome to episode 63 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. The airing of this episode also marks the beginning of 2024. Happy New Year, everyone! This episode that you will be listening to was recorded a little while back with Dr. Kari Morgenstein. This episode actually motivated me to sign up for her energy leadership, assessment and personal coaching session. Wow, what an insightful investment to dive deeper into ensuring that I am the cause rather than the effect of my life. These sessions with Dr. Morgenstein also propelled me into exploring becoming a certified coach. As you listen to this episode today, take inventory of you. A certified coach can help you redefine your career goal or personal goal, overcome obstacles, help you clarify and make difficult decisions, increase leadership and energy, and become confident as well as develop deep self knowledge and awareness. Tune in today with Dr. Kari Morgenstein and stay tuned for future empowEAR Audiology episodes as I will be sharing my coaching journey as well. Okay, before we dive into today's episode, I wanted to take a moment to give everyone a background about my guest that I have today, Dr. Kari Morgenstein.
Carrie: [00:02:08] Dr. Kari Morgenstein is an experienced, genuine, and goal oriented certified coach and speaker. She received her coaching certification from the Institute for Professional Excellence in Coaching, or iPEC, and is a master practitioner of the Energy Leadership Index Assessment. Dr. Morgenstein is the co-owner of DB coaching Group with over 15 years of experience teaching, mentoring, presenting and coaching and her coaching group, she helps early career to mid-career health care professionals find their voice so that they can lead with confidence, courage and she began her career at the University of Miami Department of Otolaryngology as the founding director of the University of Miami Children's Hearing Program. Under her leadership, she designed, developed, and led a multidisciplinary team of healthcare hearing healthcare professionals. In this role, she managed a multi-million dollar budget while gaining international recognition. Dr. Morgenstein was the youngest individual to have served as the president of the Florida Academy of Audiology, and sit on the American Academy of Audiology Board of Directors. She is a proud member of Women in Academic Medicine, and was chosen in 2019 to attend the AAMC Early Career Women Faculty Leadership Development Seminar. Dr. Morgenstein has a passion for supporting women in medicine and challenging the status quo. I am so excited to have you today. Thank you for joining me.
Kari: [00:03:52] Oh, I'm so happy to be here. Thank you for having me.
Carrie: [00:03:56] Well, I love your passion statement, supporting women in medicine and challenging the status quo. And that's another reason I'm excited that you're going to be on the EmpowEAR Audiology podcast. And I'm sure all of the guests listening today will really enjoy everything that you have to say. But as I read in your bio, one of the things that you started out as a career in audiology and I just love to hear how people somehow get started in that direction. Do you have a story behind that?
Kari: [00:04:32] Yeah, I do have, um, I do have a little bit of a story. So, you know, just like many people, I was trying to figure it out in undergrad. And, um, at the time, I really knew that I wanted to help people. Um, from a very young age, I knew that I wanted to be in a profession that helped, um, others, whether that was children or adults. And, um, you know, so through that one thing kind of led me to another. And I was at home in Chicago and was able to do, uh, shadow a pediatric audiologist. Um, her name is actually Beth Dr. Beth Tournis at um Children's Hospital of Chicago. And I give her a shout out because she she forever changed my life. Um, I was able to shadow her for a couple days. She was mostly pediatrics, a little bit of, you know, audios and hearing aids, and then a lot of cochlear implants. And just getting to see a kid hear for the first time, and how it has the ability to forever change the life not only of the child, but also of the parents and the extended family. Um, I was sold, I was I was like, I, you know, I could do this. And I was super excited about it. So I'm forever grateful that, you know, they let me come in and observe. And that Dr. Tournis was so willing to let me learn and just be a part of her days for a couple days.
Carrie: [00:06:12] Well. Wow. And then you landed in Florida, obviously, and had a career at, um, with children who have hearing needs too in Florida. So how long were you there?
Kari: [00:06:28] Yes, I did my graduate work at University of Florida and then did my last year externship at the University of Miami, and I was there for about ten years. I ran and directed the children's hearing program there, and, uh, it was awesome. It was a really neat opportunity. I was able to step into leadership early in my career, which had it was amazing and awesome, and it had its own struggles. So it was really, really neat to be a part of a large university and to just be part of such a well rounded, incredibly smart, amazingly supportive team.
Carrie: [00:07:17] And I'm sure all of those stepping stones in your early career with leadership kind of got you to where you are now. And in your bio, you mentioned that you're a full time with DB coaching group and that you wear many hats in your own family. You're a survivor of several life threatening health conditions. You're a former Division one college athlete. You're a TEDx speaker alum, and a recovering workaholic, as you call it. Did any of these personal characteristics, characteristics that you mentioned with you and your website lead you to pursue what you're doing now, which is coaching?
Kari: [00:08:01] I, I think yeah, it's a good question. I think in many ways, um, for all of us, like our, our past experiences, especially our past hardships, often mold and shape the direction that our lives lead. Um. And I was no different. I, um, I think a big part of, uh, for me was being always an athlete. Um, growing up, I was always involved in athletics, went on to Indiana University to play college volleyball. And it was through that experience that I, I remember at any given time, just having six, seven coaches surrounding me, and there was coaches there for conditioning and strength and your mental health and you know, your your specialty coach. Right? So if you play defense, you had a specialty coach, then you had the head coach. And it just felt like an environment that was so rich in supports and, um, grace and compassion and also people there that were willing to challenge you to make you better. And when I got into the real world. I guess I was a little naive because I felt like, yeah, like this, this sports bubble is going to be, you know, in, in, in the real world. And I remember just kind of like looking around and being like, wait, like, where are my coaches? Like, where are my people? And I remember thinking that like, wow, like this is really hard to navigate without a coach, without a playbook, without kind of guidelines to, you know, boundaries to kind of work within. And then you had mentioned I, I battled a few health conditions that were life threatening. And I think through that experience, you just see the world completely different, you know, for good or bad. And I remember through one of the conditions I was battling, um.
Kari: [00:10:23] A colleague had a coach and part of that part of that of having a coach. The coach, um, met with me and talked to me just to get input. And I'll never forget, she said to me, like, have you ever thought about coaching? And I was just sitting there like, no, I'm just trying to get through the day, you know? Like, I am just trying to survive. Like you have no idea, like what's going on in my life right now, like coaching? And I remember getting off the phone with her and saying to my husband, like, do you know that there's like, professional coaches? Like it's not just, you know, on a field or arena or a court, like there are people that are coaching professionals. And I remember thinking, gosh, two things. Gosh, that makes so much sense. And the second thing I thought is, could I do that full time? Because that sounds amazing. And, you know, through my illnesses, it was just always it was always on my mind. And then I, you know, I, I when I got healthier and stronger, I looked into different programs. And that's kind of what led me to IPEC and, uh, started the coaching group with my business partner, Dr. Amy Badstuber. And it's it's just been so much fun and such a neat experience. And so, yeah, I think the answer is, yeah. Like my lived experiences being an athlete, battling health issues, having different leadership roles early in my career, and then also being a mom and transitioning to that role and wearing that hat. I think all of it kind of led me to where I am today.
Carrie: [00:12:11] Yeah, that makes so much sense about your college career and coaching and having all of these people supporting you. And then you get out into the real world and you're like, wait, I need to have these people to kind of get me to the next level or to keep me going and whatever path I want to go, or thinking bigger however that might be. And I feel that coaching is really kind of a growing certification or a career pathway in different areas. Can you you you mentioned professional coaching and can you just maybe share a broaden a little bit more about how professionals and individuals might view coaching? Because I think what you said coaching typically you think about athletes, right? But you don't think about, oh, wait, there's a whole other world out there that people can benefit from coaching.
Kari: [00:13:10] Yeah, totally. I always I always say this line, I always say professional athletes have coaches. Professionals need coaches. and the so coaching really you're right Carrie. It really has taken um it's become more popular and it's become almost like a buzzword that people talk about. Or some companies, you know, say, oh, we offer coaching. Um, and I think it's important to recognize that. True coaching is very different than, let's say, consulting or mentorship. Um, so consulting, right. It serves a purpose. It's great. But it's really hey, here's a roadmap. This is how you're going to do it. And here's our advice. Mentoring also serves a purpose, right? I have incredible mentors that supported me and my career and still support me. But the issue that can happen with mentors is that sometimes it's a let me show you how I did it and hey, come with me, which can be okay and it can be really helpful. But if your path and your desires and your interests are a little bit different than your mentor, that can be kind of how you go on a path that might not be a good fit for you. Um, and then the other one that gets thrown in with coaching a lot of times is therapy or counseling, and that is a bit different too, than, than coaching.
Kari: [00:14:41] Um, therapy really is something that kind of stays in your past. It looks at your your past experiences. What about your past is showing up today. It often takes people from dysfunctional to functional and with true coaching, the coaching that we do with our group, it really gets at the core of who you are today and where you want to be tomorrow. And the neat thing about coaching is that it's a true partnership so we don't guide it. We're not telling you do this, do that. It's really having that person to ask the right questions, ask the tough questions so that you can kind of go inside and say, hey, you know what? For the first time, I'm listening to myself, my heart, my head, and I'm choosing to move forward a certain way. And so coaching, they often say, takes people from functional, right? They're they're doing pretty good. They're functional and makes them more optimal. So that idea of taking someone good to great. Hmm.
Carrie: [00:15:53] I love that and I, I think I know your answer, but why? Or who should get a coach or want a coach?
Kari: [00:16:05] I mean, obviously everyone.
Carrie: [00:16:08] I thought that was going to be your answer.
Kari: [00:16:12] You know, and we laugh about it and we joke about it. But man, like, it's so true. Like, everyone could benefit from a coach. Um, you know, I guess I guess there's three things that stand out to me. Um, I think besides everyone, I think somebody who's. Looking to be to show up, like to just show up in their life and show up authentically and show up in a raw form. And it's just like, okay, bringing all of themselves to the session or to the appointment, the good, the bad, the otherwise right. They're just ready to, to be, to, to show up all of themselves. They don't want to put a mask on anymore. They really want to dig deep and show up. Um, I think the second thing is someone who is just open to growing. You know, I think a lot of times lately we hear about this growth mindset. And for me, it's just having the ability to to have the courage to self-reflect because my goodness, it is way easier in this world to just go, go, go work, work, work and not stop and think about your feelings, your emotions, your actions. It is your thoughts. It is so much easier to just hit fast forward and go, go, go. I'll worry about that later. I'll worry about that later.
Kari: [00:17:54] That's not my problem. I worry about it later. And so I think someone who's ready to have a mirror held to them, which is not always easy, you know, and to do to do the work of reflecting and being willing and open to grow. And then I think the third thing is they're ready to accept a partnership. You know, we know in health care that there's many professions, one of which is audiology that is dominated by women. And women often struggle with asking for help and asking for support. And so it seems like such a. Simple thing, but we often have clients that'll say, like, I just had a client last week who said to me, wow, for the first time in my career. I'm asking for support, and it finally feels like I'm not alone in my career. And so I think someone who's ready to accept that support and they don't have to be like, oh my God, I'm ready, you know, let's do this. Yeah. Give me all the help. But just like has an openness to it that like getting support and having a partnership in your career and your leadership journey and your transitions that happen in your life and in your career. They're open to getting support and collaborating in a true partnership that is coaching. Mm.
Carrie: [00:19:33] That's a great explanation of the everyone but drilling down to really, who you know, may benefit being open and ready to kind of, um, have that mirror held to them. Is that the person that you've probably looking for in that partnership? So if there's someone who's out there who's listening and thinking, yeah, maybe this is something that would be beneficial for me. Can you share what maybe a coaching session might look like or how does that work?
Kari: [00:20:09] You want to do one now?
Carrie: [00:20:12] We could I don't know how good it would be. Yeah.
Kari: [00:20:15] We'll do that for the next podcast.
Carrie: [00:20:17] Okay. There you go.
Kari: [00:20:19] Um, yeah. What does it look like? So. Logistically it is typically 60 minutes. We um, with our coaching group, we have two different programs. Um, we have a program that's three months or 12 sessions and then a program that's six months, 24 sessions. And the reason that it's the three month or six month commitment is that it in order to see sustainable changes for yourself, it's really requires a good amount of sessions, you know, to look at things, to kind of pull back the layers and get to that core of what your blocks are, what your limiting beliefs are, what your assumptions are. Because we all show up with filters and baggage that we see the world with. And coaching, you really need that time and that commitment to identify those blocks and those limiting beliefs and to break through them. Um. Outside of the logistics. And of course, we have people who are like, I just want to work on this problem. And so we offer some smaller opportunities where there's 2 or 3 sessions where we might do an assessment and then offer 2 or 3 sessions. And that's really for people who are like, I have a meeting in a month. And I, you know, I want to ask for a promotion. Can you support me with that? So it's really specific to a specific issue or problem that they want to work through. And then, like each session, looks a little different. The client really guides the sessions and what's on their mind, what's showing up for them personally, professionally. And it's kind of becomes this harmony, this like beautiful, beautiful song that just comes together with the client and with the coach, and you just harmonize through your journey together to figure out how you can best support them to achieve whatever their goals may be.
Carrie: [00:22:27] Mhm.And how do you is there ever like a determination of who would be a good client or that kind of thing. I know the harmony and I can't imagine anybody not clicking with you because you have this personality that just shines. And I feel like I could just spill out anything to you right now, and you would be such a great listener. But I'm sure there's just different personalities. And how does that work?
Kari: [00:22:58] Oh, that's a great question, Carrie. So we do, um, we do offer, uh, complimentary, uh, 45 minute intro call. And in that, in that call, like, we can, we can figure out, you know, is coaching right for that person? Um, maybe they need some other support. Maybe coaching is not the right fit for them. Um, and then, like you said, you know, if there's. You know, different. You know, everyone has different styles, right? Just like different athletes click and resonate with different coaches, right? I know even for me there's some coaches I had that like it just it just worked. You know it was I appreciated the how they gave me feedback. Um, I appreciated the way that they they connected with me, the way that they coached me. And so you yeah, you see that a little bit with clients as well where maybe it's not a great fit. Um, but I most of the time, people that reach out and jump on these intro calls with us, most of the time it does work, it does click. And the reason for that I think, is, well, two things. Um, we're unique. We have more than one coach, so we have myself and Amy. And so Amy and I are both different, right? She has a different personality than me. And so maybe they click with her and they don't click with me. So we're really unique that it's not just one person. If they feel more connected with her or they feel like her skill set might be better for them, then she can see them, or I can see them, you know, vice versa. And so we're really, really unique in that sense that most of the time, like whether it's either a good fit for me or it's a good fit for Amy. And like I was saying, most people that jump on these calls like they're ready, you know, they're just they're tired of feeling drained and overwhelmed and anxious and they're ready to show up with having more peace in their life, finding more joy, and not being that workaholic that I can so relate to.
Carrie: [00:25:13] That. Yes, that makes a lot of sense. And I can see how when somebody sets up that 45 minute call with one of you, they've already done a lot of thinking and research, and they're just ready to take that next step. So I can see how that would click really quickly to. In your bio, you also mention that you are a master practitioner of the Energy Leadership Index Index. How does that play into your coaching?
Kari: [00:25:46] It is. It is plays in a ton. Um, so the ELI so the Energy Leadership Index is a really cool, really powerful assessment. It's different than a personality test. So I think many of us are used to personality tests, maybe a disk or a Myers-Briggs. And it's different because this is an attitude test. So it looks at the attitude and the filters that you show up with on a day to day basis. And then what's really cool is it shows how you show up and what energy you bring when you're under stress.
Carrie: [00:26:36] Mm.
Kari: [00:26:37] And what's really important about having this assessment for us in our coaching group is that we know that many people in health care are kind of living in that constant state of stress.
Carrie: [00:26:49] Mhm.
Kari: [00:26:50] And so we, we care of course, how you're showing up on day to day. But we really want to know how you're showing up under stress and what stress is doing to your energy and to your attitude. And the other thing that's really neat about this assessment is that, you know, with a personality and you have kids Carrie like I think in a lot of ways, like they're just kind of born with their personality. Wouldn't you agree?
Carrie: [00:27:18] Like, oh yeah, both my kids are so different. And I'm like, they've been raised but under the same roof. But I'm like, they definitely were born with their personality too. They're enhanced by us, but they're definitely different kids.
Kari: [00:27:38] Mhm I love that I love that word enhance right. You're right. So like it's almost like a work with approach. Mhm. Right. Like this is your personality. Like let me do all that I can do to enhance that. And so. Well, it's it's kind of difficult with a personality test. You're like, well, that's your personality. And like, we're going to do our best as the, the, the leader here to kind of work with your personality and enhance it, like you said. And the neat thing about attitude is that we can all change the way that we it's a choice, right? The attitude that we show up with on a day to day is a constant choice. And so what's neat about the ELI and the debriefs that we do is that it just you just gain a lot of awareness, a lot of clarity about how you're showing up. And then you can choose if you want to change that. And so we're, we're, we're it's a really, really, really neat, really powerful assessment. And. Yeah, it's. I can't say enough about it.
Carrie: [00:28:43] Well, I know that you had put that bug in my ear a while ago about the, um. ELI. And you're making me excited to, uh, connect with you about doing that and kind of pulling, seeing what filters I have and what I bring to stressful situations. Because, as you said, in health care and in our jobs, we just are under the, you know, like under a lot of stress. And what you said earlier, we don't take the time to think about anything. We just kind of get up and go and never have that reflection time. So I'm sure that shows up too, within the assessment, too, of how we look at life.
Kari: [00:29:31] Absolutely. I'm ready for you. Let me know.
Carrie: [00:29:33] I know you are. I know you are. We'll set this up for sure. This would be like a whole another reveal after, um, see what's happening. But I know that you said that it's Amy, right? Is your, um, the other coach. And tell me a little bit about your name. Do you dB coaching group and where did that come from?
Kari: [00:29:57] So D is my married last name. So Dermer and Amy's last name is Badstubner. So there's the D, there's the B, but it's of course lowercase and capital like decibel. And it's done on purpose. We both Amy and I met in graduate school at University of Florida, and Amy went on to, um, build and run her own audiology practice, which she recently successfully sold. And I obviously had a very fruitful, amazing career in audiology on the academic university side. And it was really important as we were creating our business, to have a tribute to audiology and kind of where we came from. And for me, I'm forever grateful for all the people in audiology that shaped me as a person and as a professional and ones that continue to to I mean, just last week I was talking to a mentor of mine, um, and, and it was just really important to both of us to just kind of give a shout out to where we came from and to not lose our connection with audiology, which, as you know, is such an amazing profession and has given me so, so much. And then the last thing was dream big. And I think, Carrie, when we first started, I think you said like think big.
Carrie: [00:31:27] Mhm.
Kari: [00:31:29] Um, which I was like, oh like I totally yeah think big, dream big. You know, Amy and I live by that. We really try to challenge each other within our business and on our team to challenge the status quo. To what? No idea is too big, no thought is too crazy and just kind of see where it lands. You know, life is too short to play small and to, you know, be timid. And so it's a reminder of, hey, you know, building a business might be hard. It has its own ups and downs, but never to forget that dreaming big is important.
Carrie: [00:32:11] I love that with it. Keeping your roots in audiology with the with the name, and then having a partner that happened to be in grad school with you. So that is so cool. And I know on your web page you and within your bio, you said you focused a lot on supporting those early career to mid-career professionals in healthcare. Why did you kind of use that as a focus?
Kari: [00:32:40] I think it was, you know. I think because that was the area that we found that we needed the most support, and it wasn't always available or easy to find. I think that group is interesting. Um, you know, early career, you're trying to figure things out. You're trying to figure out your professional fingerprint, mid-career. Sometimes your personal life changes, things get a little crazy, and that might show up professionally and I think. It's a group that needs a lot of support. There's a lot of things happening, a lot of transitions, again, personally in people's lives or professionally and or professionally. And Amy and I really wanted to be support to that group and make sure that. You know, I don't believe that you need to learn things the hard way. A lot of people say that, that you just got to figure it out yourself and that you got to figure things out the hard way. And it's I don't believe that. And so I think that if you know someone is in their early career or mid-career and just trying to figure it out, if we can make it a little bit easier, that feels incredibly rewarding. Mm.
Carrie: [00:34:20] Do you have any other target groups that you have besides health care professionals? And I know you like women is a big part of of your group too. And supporting women who are in leadership positions too. But outside of that, do you have focuses?
Kari: [00:34:37] Yeah. We're really focused right now on health care. You know, there's such a need, especially post-pandemic. We have clients that range from nurses to audiologists to speech language pathologists to physicians. And there's a lot of patterns, you know, that they're showing up with. And there's a ton of burnout and a ton of just kind of reflection happening. And so for right now, our group is really focused on health care. You know, who knows, maybe in a year from now or two years from now, you know, Amy and I have different interests and different passions. We both have pretty diverse backgrounds and we have ideas in mind. Um, but for right now, we're really focused on supporting those early career and mid-career professionals in healthcare.
Carrie: [00:35:29] Well, that's where your dB comes back into play, right? Your dream big.
Kari: [00:35:34] Exactly.
Carrie: [00:35:36] If listeners wanted to get connected where they're like, hey, this sounds like something I would like to explore or get more information about, how can they get in touch with you or with Amy?
Kari: [00:35:49] Yes. So they can go to our website. Our website is dB coaching Group. Com, or you can find us on LinkedIn. Uh, I'm on LinkedIn. Kari Morgenstein Dermer, you can send us a message. Um, Amy, is Amy Badstubner. Um, and you can send her a message. We love just talking to people. You know, we do, like virtual coffee dates and things like that. And, you know, I really encourage any of your listeners that if they just are, they just want to chat or want to hash something out, or they heard about coaching, but they don't really know what coaching is and they want to just talk about it, reach out. We're we're we're super available. We want to have conversations. It's really fun to meet new people. And, um, yeah, just send us a message and we're we would love to connect.
Carrie: [00:36:42] Well, I can definitely link the website or the your website in the show notes too Kari. Is there anything that I forgot to ask you that you were hoping I would ask you?
Kari: [00:36:56] No, I think you covered it all. It was so fun. It was so good to talk to you.
Carrie: [00:37:01] Thank you. I'm so glad that we had this conversation. And I'm sure there are a ton of listeners out there who are just feeling that burnout, whether it's if they're the healthcare or the schools or whatever. But as professionals who are, um, in this focus in speech and hearing, who just really want to kind of see what their next step might be or just kind of make it a little bit easier. And I hope that they reach out to you guys. So I just want to say I am amazed at what you guys have done to, um, with dB coaching and just kind of, you know, taking, I guess, that, um, dream big that you both had together and just making a move and, and going in that direction. I know that takes a lot of courage too. But obviously it was the right thing for both of you and how exciting to kind of have your roots in audiology, but really go in another direction to, to to help more people in a different way. So thanks for all that you do.
Kari: [00:38:08] Oh, absolutely. That's so kind of you. Thank you. Thank you for all you do, Carrie. You're incredible. And yeah, and you're changing so many lives. So I'm really grateful for the opportunity and to be able to chat.
Carrie: [00:38:21] All right. Well, thank you, listeners for listening to the Empower Ideology podcast, and I hope that you will visit Dr. Kari Morgenstein at her website and reach out to her in the future. Thank you.
Announcer: [00:38:34] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 63 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. The airing of this episode also marks the beginning of 2024. Happy New Year, everyone! This episode that you will be listening to was recorded a little while back with Dr. Kari Morgenstein. This episode actually motivated me to sign up for her energy leadership, assessment and personal coaching session. Wow, what an insightful investment to dive deeper into ensuring that I am the cause rather than the effect of my life. These sessions with Dr. Morgenstein also propelled me into exploring becoming a certified coach. As you listen to this episode today, take inventory of you. A certified coach can help you redefine your career goal or personal goal, overcome obstacles, help you clarify and make difficult decisions, increase leadership and energy, and become confident as well as develop deep self knowledge and awareness. Tune in today with Dr. Kari Morgenstein and stay tuned for future empowEAR Audiology episodes as I will be sharing my coaching journey as well. Okay, before we dive into today's episode, I wanted to take a moment to give everyone a background about my guest that I have today, Dr. Kari Morgenstein.
Carrie: [00:02:08] Dr. Kari Morgenstein is an experienced, genuine, and goal oriented certified coach and speaker. She received her coaching certification from the Institute for Professional Excellence in Coaching, or iPEC, and is a master practitioner of the Energy Leadership Index Assessment. Dr. Morgenstein is the co-owner of DB coaching Group with over 15 years of experience teaching, mentoring, presenting and coaching and her coaching group, she helps early career to mid-career health care professionals find their voice so that they can lead with confidence, courage and she began her career at the University of Miami Department of Otolaryngology as the founding director of the University of Miami Children's Hearing Program. Under her leadership, she designed, developed, and led a multidisciplinary team of healthcare hearing healthcare professionals. In this role, she managed a multi-million dollar budget while gaining international recognition. Dr. Morgenstein was the youngest individual to have served as the president of the Florida Academy of Audiology, and sit on the American Academy of Audiology Board of Directors. She is a proud member of Women in Academic Medicine, and was chosen in 2019 to attend the AAMC Early Career Women Faculty Leadership Development Seminar. Dr. Morgenstein has a passion for supporting women in medicine and challenging the status quo. I am so excited to have you today. Thank you for joining me.
Kari: [00:03:52] Oh, I'm so happy to be here. Thank you for having me.
Carrie: [00:03:56] Well, I love your passion statement, supporting women in medicine and challenging the status quo. And that's another reason I'm excited that you're going to be on the EmpowEAR Audiology podcast. And I'm sure all of the guests listening today will really enjoy everything that you have to say. But as I read in your bio, one of the things that you started out as a career in audiology and I just love to hear how people somehow get started in that direction. Do you have a story behind that?
Kari: [00:04:32] Yeah, I do have, um, I do have a little bit of a story. So, you know, just like many people, I was trying to figure it out in undergrad. And, um, at the time, I really knew that I wanted to help people. Um, from a very young age, I knew that I wanted to be in a profession that helped, um, others, whether that was children or adults. And, um, you know, so through that one thing kind of led me to another. And I was at home in Chicago and was able to do, uh, shadow a pediatric audiologist. Um, her name is actually Beth Dr. Beth Tournis at um Children's Hospital of Chicago. And I give her a shout out because she she forever changed my life. Um, I was able to shadow her for a couple days. She was mostly pediatrics, a little bit of, you know, audios and hearing aids, and then a lot of cochlear implants. And just getting to see a kid hear for the first time, and how it has the ability to forever change the life not only of the child, but also of the parents and the extended family. Um, I was sold, I was I was like, I, you know, I could do this. And I was super excited about it. So I'm forever grateful that, you know, they let me come in and observe. And that Dr. Tournis was so willing to let me learn and just be a part of her days for a couple days.
Carrie: [00:06:12] Well. Wow. And then you landed in Florida, obviously, and had a career at, um, with children who have hearing needs too in Florida. So how long were you there?
Kari: [00:06:28] Yes, I did my graduate work at University of Florida and then did my last year externship at the University of Miami, and I was there for about ten years. I ran and directed the children's hearing program there, and, uh, it was awesome. It was a really neat opportunity. I was able to step into leadership early in my career, which had it was amazing and awesome, and it had its own struggles. So it was really, really neat to be a part of a large university and to just be part of such a well rounded, incredibly smart, amazingly supportive team.
Carrie: [00:07:17] And I'm sure all of those stepping stones in your early career with leadership kind of got you to where you are now. And in your bio, you mentioned that you're a full time with DB coaching group and that you wear many hats in your own family. You're a survivor of several life threatening health conditions. You're a former Division one college athlete. You're a TEDx speaker alum, and a recovering workaholic, as you call it. Did any of these personal characteristics, characteristics that you mentioned with you and your website lead you to pursue what you're doing now, which is coaching?
Kari: [00:08:01] I, I think yeah, it's a good question. I think in many ways, um, for all of us, like our, our past experiences, especially our past hardships, often mold and shape the direction that our lives lead. Um. And I was no different. I, um, I think a big part of, uh, for me was being always an athlete. Um, growing up, I was always involved in athletics, went on to Indiana University to play college volleyball. And it was through that experience that I, I remember at any given time, just having six, seven coaches surrounding me, and there was coaches there for conditioning and strength and your mental health and you know, your your specialty coach. Right? So if you play defense, you had a specialty coach, then you had the head coach. And it just felt like an environment that was so rich in supports and, um, grace and compassion and also people there that were willing to challenge you to make you better. And when I got into the real world. I guess I was a little naive because I felt like, yeah, like this, this sports bubble is going to be, you know, in, in, in the real world. And I remember just kind of like looking around and being like, wait, like, where are my coaches? Like, where are my people? And I remember thinking that like, wow, like this is really hard to navigate without a coach, without a playbook, without kind of guidelines to, you know, boundaries to kind of work within. And then you had mentioned I, I battled a few health conditions that were life threatening. And I think through that experience, you just see the world completely different, you know, for good or bad. And I remember through one of the conditions I was battling, um.
Kari: [00:10:23] A colleague had a coach and part of that part of that of having a coach. The coach, um, met with me and talked to me just to get input. And I'll never forget, she said to me, like, have you ever thought about coaching? And I was just sitting there like, no, I'm just trying to get through the day, you know? Like, I am just trying to survive. Like you have no idea, like what's going on in my life right now, like coaching? And I remember getting off the phone with her and saying to my husband, like, do you know that there's like, professional coaches? Like it's not just, you know, on a field or arena or a court, like there are people that are coaching professionals. And I remember thinking, gosh, two things. Gosh, that makes so much sense. And the second thing I thought is, could I do that full time? Because that sounds amazing. And, you know, through my illnesses, it was just always it was always on my mind. And then I, you know, I, I when I got healthier and stronger, I looked into different programs. And that's kind of what led me to IPEC and, uh, started the coaching group with my business partner, Dr. Amy Badstuber. And it's it's just been so much fun and such a neat experience. And so, yeah, I think the answer is, yeah. Like my lived experiences being an athlete, battling health issues, having different leadership roles early in my career, and then also being a mom and transitioning to that role and wearing that hat. I think all of it kind of led me to where I am today.
Carrie: [00:12:11] Yeah, that makes so much sense about your college career and coaching and having all of these people supporting you. And then you get out into the real world and you're like, wait, I need to have these people to kind of get me to the next level or to keep me going and whatever path I want to go, or thinking bigger however that might be. And I feel that coaching is really kind of a growing certification or a career pathway in different areas. Can you you you mentioned professional coaching and can you just maybe share a broaden a little bit more about how professionals and individuals might view coaching? Because I think what you said coaching typically you think about athletes, right? But you don't think about, oh, wait, there's a whole other world out there that people can benefit from coaching.
Kari: [00:13:10] Yeah, totally. I always I always say this line, I always say professional athletes have coaches. Professionals need coaches. and the so coaching really you're right Carrie. It really has taken um it's become more popular and it's become almost like a buzzword that people talk about. Or some companies, you know, say, oh, we offer coaching. Um, and I think it's important to recognize that. True coaching is very different than, let's say, consulting or mentorship. Um, so consulting, right. It serves a purpose. It's great. But it's really hey, here's a roadmap. This is how you're going to do it. And here's our advice. Mentoring also serves a purpose, right? I have incredible mentors that supported me and my career and still support me. But the issue that can happen with mentors is that sometimes it's a let me show you how I did it and hey, come with me, which can be okay and it can be really helpful. But if your path and your desires and your interests are a little bit different than your mentor, that can be kind of how you go on a path that might not be a good fit for you. Um, and then the other one that gets thrown in with coaching a lot of times is therapy or counseling, and that is a bit different too, than, than coaching.
Kari: [00:14:41] Um, therapy really is something that kind of stays in your past. It looks at your your past experiences. What about your past is showing up today. It often takes people from dysfunctional to functional and with true coaching, the coaching that we do with our group, it really gets at the core of who you are today and where you want to be tomorrow. And the neat thing about coaching is that it's a true partnership so we don't guide it. We're not telling you do this, do that. It's really having that person to ask the right questions, ask the tough questions so that you can kind of go inside and say, hey, you know what? For the first time, I'm listening to myself, my heart, my head, and I'm choosing to move forward a certain way. And so coaching, they often say, takes people from functional, right? They're they're doing pretty good. They're functional and makes them more optimal. So that idea of taking someone good to great. Hmm.
Carrie: [00:15:53] I love that and I, I think I know your answer, but why? Or who should get a coach or want a coach?
Kari: [00:16:05] I mean, obviously everyone.
Carrie: [00:16:08] I thought that was going to be your answer.
Kari: [00:16:12] You know, and we laugh about it and we joke about it. But man, like, it's so true. Like, everyone could benefit from a coach. Um, you know, I guess I guess there's three things that stand out to me. Um, I think besides everyone, I think somebody who's. Looking to be to show up, like to just show up in their life and show up authentically and show up in a raw form. And it's just like, okay, bringing all of themselves to the session or to the appointment, the good, the bad, the otherwise right. They're just ready to, to be, to, to show up all of themselves. They don't want to put a mask on anymore. They really want to dig deep and show up. Um, I think the second thing is someone who is just open to growing. You know, I think a lot of times lately we hear about this growth mindset. And for me, it's just having the ability to to have the courage to self-reflect because my goodness, it is way easier in this world to just go, go, go work, work, work and not stop and think about your feelings, your emotions, your actions. It is your thoughts. It is so much easier to just hit fast forward and go, go, go. I'll worry about that later. I'll worry about that later.
Kari: [00:17:54] That's not my problem. I worry about it later. And so I think someone who's ready to have a mirror held to them, which is not always easy, you know, and to do to do the work of reflecting and being willing and open to grow. And then I think the third thing is they're ready to accept a partnership. You know, we know in health care that there's many professions, one of which is audiology that is dominated by women. And women often struggle with asking for help and asking for support. And so it seems like such a. Simple thing, but we often have clients that'll say, like, I just had a client last week who said to me, wow, for the first time in my career. I'm asking for support, and it finally feels like I'm not alone in my career. And so I think someone who's ready to accept that support and they don't have to be like, oh my God, I'm ready, you know, let's do this. Yeah. Give me all the help. But just like has an openness to it that like getting support and having a partnership in your career and your leadership journey and your transitions that happen in your life and in your career. They're open to getting support and collaborating in a true partnership that is coaching. Mm.
Carrie: [00:19:33] That's a great explanation of the everyone but drilling down to really, who you know, may benefit being open and ready to kind of, um, have that mirror held to them. Is that the person that you've probably looking for in that partnership? So if there's someone who's out there who's listening and thinking, yeah, maybe this is something that would be beneficial for me. Can you share what maybe a coaching session might look like or how does that work?
Kari: [00:20:09] You want to do one now?
Carrie: [00:20:12] We could I don't know how good it would be. Yeah.
Kari: [00:20:15] We'll do that for the next podcast.
Carrie: [00:20:17] Okay. There you go.
Kari: [00:20:19] Um, yeah. What does it look like? So. Logistically it is typically 60 minutes. We um, with our coaching group, we have two different programs. Um, we have a program that's three months or 12 sessions and then a program that's six months, 24 sessions. And the reason that it's the three month or six month commitment is that it in order to see sustainable changes for yourself, it's really requires a good amount of sessions, you know, to look at things, to kind of pull back the layers and get to that core of what your blocks are, what your limiting beliefs are, what your assumptions are. Because we all show up with filters and baggage that we see the world with. And coaching, you really need that time and that commitment to identify those blocks and those limiting beliefs and to break through them. Um. Outside of the logistics. And of course, we have people who are like, I just want to work on this problem. And so we offer some smaller opportunities where there's 2 or 3 sessions where we might do an assessment and then offer 2 or 3 sessions. And that's really for people who are like, I have a meeting in a month. And I, you know, I want to ask for a promotion. Can you support me with that? So it's really specific to a specific issue or problem that they want to work through. And then, like each session, looks a little different. The client really guides the sessions and what's on their mind, what's showing up for them personally, professionally. And it's kind of becomes this harmony, this like beautiful, beautiful song that just comes together with the client and with the coach, and you just harmonize through your journey together to figure out how you can best support them to achieve whatever their goals may be.
Carrie: [00:22:27] Mhm.And how do you is there ever like a determination of who would be a good client or that kind of thing. I know the harmony and I can't imagine anybody not clicking with you because you have this personality that just shines. And I feel like I could just spill out anything to you right now, and you would be such a great listener. But I'm sure there's just different personalities. And how does that work?
Kari: [00:22:58] Oh, that's a great question, Carrie. So we do, um, we do offer, uh, complimentary, uh, 45 minute intro call. And in that, in that call, like, we can, we can figure out, you know, is coaching right for that person? Um, maybe they need some other support. Maybe coaching is not the right fit for them. Um, and then, like you said, you know, if there's. You know, different. You know, everyone has different styles, right? Just like different athletes click and resonate with different coaches, right? I know even for me there's some coaches I had that like it just it just worked. You know it was I appreciated the how they gave me feedback. Um, I appreciated the way that they they connected with me, the way that they coached me. And so you yeah, you see that a little bit with clients as well where maybe it's not a great fit. Um, but I most of the time, people that reach out and jump on these intro calls with us, most of the time it does work, it does click. And the reason for that I think, is, well, two things. Um, we're unique. We have more than one coach, so we have myself and Amy. And so Amy and I are both different, right? She has a different personality than me. And so maybe they click with her and they don't click with me. So we're really unique that it's not just one person. If they feel more connected with her or they feel like her skill set might be better for them, then she can see them, or I can see them, you know, vice versa. And so we're really, really unique in that sense that most of the time, like whether it's either a good fit for me or it's a good fit for Amy. And like I was saying, most people that jump on these calls like they're ready, you know, they're just they're tired of feeling drained and overwhelmed and anxious and they're ready to show up with having more peace in their life, finding more joy, and not being that workaholic that I can so relate to.
Carrie: [00:25:13] That. Yes, that makes a lot of sense. And I can see how when somebody sets up that 45 minute call with one of you, they've already done a lot of thinking and research, and they're just ready to take that next step. So I can see how that would click really quickly to. In your bio, you also mention that you are a master practitioner of the Energy Leadership Index Index. How does that play into your coaching?
Kari: [00:25:46] It is. It is plays in a ton. Um, so the ELI so the Energy Leadership Index is a really cool, really powerful assessment. It's different than a personality test. So I think many of us are used to personality tests, maybe a disk or a Myers-Briggs. And it's different because this is an attitude test. So it looks at the attitude and the filters that you show up with on a day to day basis. And then what's really cool is it shows how you show up and what energy you bring when you're under stress.
Carrie: [00:26:36] Mm.
Kari: [00:26:37] And what's really important about having this assessment for us in our coaching group is that we know that many people in health care are kind of living in that constant state of stress.
Carrie: [00:26:49] Mhm.
Kari: [00:26:50] And so we, we care of course, how you're showing up on day to day. But we really want to know how you're showing up under stress and what stress is doing to your energy and to your attitude. And the other thing that's really neat about this assessment is that, you know, with a personality and you have kids Carrie like I think in a lot of ways, like they're just kind of born with their personality. Wouldn't you agree?
Carrie: [00:27:18] Like, oh yeah, both my kids are so different. And I'm like, they've been raised but under the same roof. But I'm like, they definitely were born with their personality too. They're enhanced by us, but they're definitely different kids.
Kari: [00:27:38] Mhm I love that I love that word enhance right. You're right. So like it's almost like a work with approach. Mhm. Right. Like this is your personality. Like let me do all that I can do to enhance that. And so. Well, it's it's kind of difficult with a personality test. You're like, well, that's your personality. And like, we're going to do our best as the, the, the leader here to kind of work with your personality and enhance it, like you said. And the neat thing about attitude is that we can all change the way that we it's a choice, right? The attitude that we show up with on a day to day is a constant choice. And so what's neat about the ELI and the debriefs that we do is that it just you just gain a lot of awareness, a lot of clarity about how you're showing up. And then you can choose if you want to change that. And so we're, we're, we're it's a really, really, really neat, really powerful assessment. And. Yeah, it's. I can't say enough about it.
Carrie: [00:28:43] Well, I know that you had put that bug in my ear a while ago about the, um. ELI. And you're making me excited to, uh, connect with you about doing that and kind of pulling, seeing what filters I have and what I bring to stressful situations. Because, as you said, in health care and in our jobs, we just are under the, you know, like under a lot of stress. And what you said earlier, we don't take the time to think about anything. We just kind of get up and go and never have that reflection time. So I'm sure that shows up too, within the assessment, too, of how we look at life.
Kari: [00:29:31] Absolutely. I'm ready for you. Let me know.
Carrie: [00:29:33] I know you are. I know you are. We'll set this up for sure. This would be like a whole another reveal after, um, see what's happening. But I know that you said that it's Amy, right? Is your, um, the other coach. And tell me a little bit about your name. Do you dB coaching group and where did that come from?
Kari: [00:29:57] So D is my married last name. So Dermer and Amy's last name is Badstubner. So there's the D, there's the B, but it's of course lowercase and capital like decibel. And it's done on purpose. We both Amy and I met in graduate school at University of Florida, and Amy went on to, um, build and run her own audiology practice, which she recently successfully sold. And I obviously had a very fruitful, amazing career in audiology on the academic university side. And it was really important as we were creating our business, to have a tribute to audiology and kind of where we came from. And for me, I'm forever grateful for all the people in audiology that shaped me as a person and as a professional and ones that continue to to I mean, just last week I was talking to a mentor of mine, um, and, and it was just really important to both of us to just kind of give a shout out to where we came from and to not lose our connection with audiology, which, as you know, is such an amazing profession and has given me so, so much. And then the last thing was dream big. And I think, Carrie, when we first started, I think you said like think big.
Carrie: [00:31:27] Mhm.
Kari: [00:31:29] Um, which I was like, oh like I totally yeah think big, dream big. You know, Amy and I live by that. We really try to challenge each other within our business and on our team to challenge the status quo. To what? No idea is too big, no thought is too crazy and just kind of see where it lands. You know, life is too short to play small and to, you know, be timid. And so it's a reminder of, hey, you know, building a business might be hard. It has its own ups and downs, but never to forget that dreaming big is important.
Carrie: [00:32:11] I love that with it. Keeping your roots in audiology with the with the name, and then having a partner that happened to be in grad school with you. So that is so cool. And I know on your web page you and within your bio, you said you focused a lot on supporting those early career to mid-career professionals in healthcare. Why did you kind of use that as a focus?
Kari: [00:32:40] I think it was, you know. I think because that was the area that we found that we needed the most support, and it wasn't always available or easy to find. I think that group is interesting. Um, you know, early career, you're trying to figure things out. You're trying to figure out your professional fingerprint, mid-career. Sometimes your personal life changes, things get a little crazy, and that might show up professionally and I think. It's a group that needs a lot of support. There's a lot of things happening, a lot of transitions, again, personally in people's lives or professionally and or professionally. And Amy and I really wanted to be support to that group and make sure that. You know, I don't believe that you need to learn things the hard way. A lot of people say that, that you just got to figure it out yourself and that you got to figure things out the hard way. And it's I don't believe that. And so I think that if you know someone is in their early career or mid-career and just trying to figure it out, if we can make it a little bit easier, that feels incredibly rewarding. Mm.
Carrie: [00:34:20] Do you have any other target groups that you have besides health care professionals? And I know you like women is a big part of of your group too. And supporting women who are in leadership positions too. But outside of that, do you have focuses?
Kari: [00:34:37] Yeah. We're really focused right now on health care. You know, there's such a need, especially post-pandemic. We have clients that range from nurses to audiologists to speech language pathologists to physicians. And there's a lot of patterns, you know, that they're showing up with. And there's a ton of burnout and a ton of just kind of reflection happening. And so for right now, our group is really focused on health care. You know, who knows, maybe in a year from now or two years from now, you know, Amy and I have different interests and different passions. We both have pretty diverse backgrounds and we have ideas in mind. Um, but for right now, we're really focused on supporting those early career and mid-career professionals in healthcare.
Carrie: [00:35:29] Well, that's where your dB comes back into play, right? Your dream big.
Kari: [00:35:34] Exactly.
Carrie: [00:35:36] If listeners wanted to get connected where they're like, hey, this sounds like something I would like to explore or get more information about, how can they get in touch with you or with Amy?
Kari: [00:35:49] Yes. So they can go to our website. Our website is dB coaching Group. Com, or you can find us on LinkedIn. Uh, I'm on LinkedIn. Kari Morgenstein Dermer, you can send us a message. Um, Amy, is Amy Badstubner. Um, and you can send her a message. We love just talking to people. You know, we do, like virtual coffee dates and things like that. And, you know, I really encourage any of your listeners that if they just are, they just want to chat or want to hash something out, or they heard about coaching, but they don't really know what coaching is and they want to just talk about it, reach out. We're we're we're super available. We want to have conversations. It's really fun to meet new people. And, um, yeah, just send us a message and we're we would love to connect.
Carrie: [00:36:42] Well, I can definitely link the website or the your website in the show notes too Kari. Is there anything that I forgot to ask you that you were hoping I would ask you?
Kari: [00:36:56] No, I think you covered it all. It was so fun. It was so good to talk to you.
Carrie: [00:37:01] Thank you. I'm so glad that we had this conversation. And I'm sure there are a ton of listeners out there who are just feeling that burnout, whether it's if they're the healthcare or the schools or whatever. But as professionals who are, um, in this focus in speech and hearing, who just really want to kind of see what their next step might be or just kind of make it a little bit easier. And I hope that they reach out to you guys. So I just want to say I am amazed at what you guys have done to, um, with dB coaching and just kind of, you know, taking, I guess, that, um, dream big that you both had together and just making a move and, and going in that direction. I know that takes a lot of courage too. But obviously it was the right thing for both of you and how exciting to kind of have your roots in audiology, but really go in another direction to, to to help more people in a different way. So thanks for all that you do.
Kari: [00:38:08] Oh, absolutely. That's so kind of you. Thank you. Thank you for all you do, Carrie. You're incredible. And yeah, and you're changing so many lives. So I'm really grateful for the opportunity and to be able to chat.
Carrie: [00:38:21] All right. Well, thank you, listeners for listening to the Empower Ideology podcast, and I hope that you will visit Dr. Kari Morgenstein at her website and reach out to her in the future. Thank you.
Announcer: [00:38:34] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 62: empowEAR Audiology - Sydney Bassard
Announcer: [00:00:00] Welcome to episode 62 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Okay, today I am excited to introduce to all of you Sydney Bassard and she is an ASHA certified Speech-Language pathologist. She received both her Bachelor of Science and Public Health and her Master of Speech Pathology from the University of South Carolina. Sydney is licensed in Virginia, North Carolina, and South Carolina. Her clinical focus areas are working with individuals who are deaf and hard of hearing, and those with literacy challenges. Her motto of listening, learning, and advocating stems from the three principles that guide her clinical practice. Sydney, I want to welcome you to the empowEAR Audiology podcast. Thanks for being here.
Sydney: [00:01:29] Thank you so much for having me, Carrie. I'm really excited.
Carrie: [00:01:32] I'm excited to have this conversation with you, too. Before we dive into today's topic of health literacy, I would love if you could share with our audience a little background of how you ventured into the field of speech-language pathology, and then your interest of working with children and individuals who are deaf and hard of hearing.
Sydney: [00:01:56] Yeah, so I have like an unconventional way that I came into the field. So I actually went to school to be a pharmacist and thought that that was going to be what I was going to do. And then over time, my brother, who's younger than me, got diagnosed with dyslexia and ADHD. So I ended up working for a literacy intervention company and loved the work that I was doing there. It was far better than the hard sciences that I was having to take in order to try to become a pharmacist. So I ended up switching my major and became a public health major, and then ultimately went to grad school to become an SLP. So that's kind of how I got into speech language pathology. And then specifically with the deaf and hard of hearing population, I met a professor who does research in that area, and she was looking for people to help volunteer in her lab. I signed up and said, sure, I'd love to. Like I want to make connections. And that's where I started learning a lot more about this particular population, specifically looking at listening, spoken language and literacy outcomes. And ever since then, I've been here.
Carrie: [00:03:03] Well, yeah. That's exciting. I love hearing everybody's stories of how they kind of venture into it, because everyone has such a lot of people have an unconventional way that they get into it. I also wanted to ask you a little bit about your listeningSLP. I feel like that's how I know you because of a lot of your social media, which is amazing what you put out there. But can you just share about your work experience and your business?
Sydney: [00:03:32] Yeah. Thank you. So I used to work outpatient pediatrics on a cochlear implant team, and I loved what I was doing. But coming from a public health background, one thing that I always was able to notice is when people had a good grasp and understanding of some of the things that they were being asked to do for their child with following up for audiological appointments, whether it was going to weekly speech therapy sessions, charging the device, all of those different things. Right. And so when people had a good understanding, you saw that they did them pretty naturally versus when people didn't have a great understanding. Sometimes it came, it could come off to professionals as if they didn't care. They weren't trying when really it wasn't any of those things. It's that they didn't have a good understanding or knowledge of what they were supposed to do. So I was like, you know, I have all of this knowledge about hearing loss and working with the population from grad school. I would love to just share like little tidbits and things that people could do at home. So it really started on. I just wanted to share about listening and spoken language on Instagram, and it's kind of morphed since then, as my own thinking has morphed a little bit too. And now our goal is really just how do we support language development for deaf and hard of hearing children, and then also to how we can find different resources and supports that families may not know about.
Carrie: [00:04:59] Yeah, well, I know your little tidbits are just like those little bytes of information kind of stick with people. So it's nice to have that. And I know today we had talked ahead of the podcast and wanted to dive deeper into a conversation about health literacy and how that can impact a lot of the families that our listeners are working with. And I can see now that your combination or your background with public health and Speech-Language pathology really kind of tie into this. So on a general level, can you just share with the audience what is health literacy and what are some of those key components of health literacy?
Sydney: [00:05:45] Yes. So health literacy just actually got a new definition. So we can think of it as two kind of constructs. You have personal health literacy. And that's just really more so about the degree to which an individual or a person is able to find, understand and use information in order to make health-related decisions and actions for themselves and others. And then the other one is about organizational health literacy. So that's being able to understand how to navigate and work within a system in order to make those informed healthcare decisions for themselves and for other people. And both of those are based on the CDC definition of what health literacy is to this point. So when I think about health literacy, there's the three A's that we can always have. And this is what I encourage people to think about when we are looking for information or creating information. It should always be accurate, accessible and actionable.
Carrie: [00:06:46] I like that acronym or the accurate, accessible and actionable and. For having those three A's. How can how does that impact the well-being for families and and individuals? How can we make the three A's come alive for families?
Sydney: [00:07:09] Oh, I mean, I personally think that having a good understanding of whatever is going on is like the driving force to really committing to care, but also understanding the importance of it. So when we think about like information needing to be accurate, right, we know that sometimes pseudoscience is excuse me, we know sometimes that pseudoscience is out there. So that just means like information that's not accurate. So whenever we're sharing things we want to make sure that it is accurate. It's based on evidence that's based on the science that we know is there. So that we want to share with families like things that they're actually able to understand from that perspective. Then it should be accessible. So accessibility sometimes is not always in like just the print form. That may be multimedia. It could be video. And then we should always think about the fact that the average reading rate is around eighth grade for adults across the US. So when we are looking for resources, if they have a higher reading level and in order to understand them, meaning that they're filled with professional words and jargon that may not be accessible for people, like for the general public or population and then actionable. So one thing that we know, like coming out of the field of public health, is that information alone is not enough. So it's great that they have accurate information that it was accessible for them. But if there's no actionable steps based on what's being presented, what exactly are they supposed to do with that? And so sometimes too, when we don't talk about what is actionable, that's maybe where we see like a breakdown in communication and fall off with care.
Carrie: [00:08:53] Yeah. Which is kind of leads directly into my next question is like, what are some of the challenges that families face as it relates to health literacy, too? I mean, you talked about this breakdown with actionable items, but it probably breaks down on all of these three A levels.
Sydney: [00:09:17] I think the biggest one that I've seen is like lost to follow up with care. So we see a lot of people who we know in the US. We're really fortunate that we have a newborn hearing screening program that's universal in all 50 states, but people go through that, right. And then there's no sometimes kids have no follow up and no follow up can happen for many reasons, right? The parents just don't follow up. People move. Things happen. Like somebody may be feeling overwhelmed with having a newborn and then also having to do an additional appointment. In addition to like the well-baby appointments, there's so many things that can happen. But when we're talking about after the screening, if it just says your child, you know, did not pass, this is what we want you to do. But it's not like written in a parent-friendly way. If it like the steps are not actionable in the sense of like you just told them that they should follow up, but like a list wasn't provided or hyperlinks to a website for them to make the appointment online weren't provided. Is that actually actionable? Maybe. Maybe not. So we see that, I think on the early end, but then even to his kids kind of progressed. I mean, sometimes people have difficulties where they don't go to mappings or they're not able to make it to mappings. Do they understand the importance of like why we do CI mappings, why going to those appointments are important? Do they understand the importance of speech therapy and not just being like, oh, so my kid can talk, but to have like a better and more accurate understanding of exactly what they're supposed to be doing in order to benefit their kid. And if they're not provided with that information, maybe they just don't know, especially if this is their first encounter with like, children, or if it's their first encounter with like navigating the deaf and hard of hearing space.
Carrie: [00:11:09] Which is statistically about 90% of our families who are kind of navigating through that space. Because a lot of times that the child is the first person that they've met who happens to be deaf or hard of hearing. Do you see? Um. Any other barriers as it relates to maybe cultural differences or language differences that kind of contribute to the health literacy challenges too.
Sydney: [00:11:44] Yeah. So we know that these kind of what sometimes are called disparities in the field exist across the board. And so we see it even with health literacy and how it comes into play, is that information being presented in a way that is culturally mindful. So just because I have an infographic, maybe knowing that, like a family might have distrust of the medical system or people is like giving them a handout and sending them out the door. The best way to do it? Maybe not. If I have a video version of the same thing that shows real people talks about real experiences, maybe that would resonate more, especially if we know that there are people that like, look like them or that are within their culture kind of represented within those spaces. Um, I think too, sometimes, like we as professionals tend to be some of that barrier when it comes to health literacy and health information. We want to think that we're not gatekeepers of information, but I've sat on many different sides with many different families, and sometimes it's the professionals like we are not freely sharing all of the different resources in a responsible way. We might just start rattling off about 5 or 10 things, but what we never did was spend time to send a follow-up with actionable hyperlinks that people can go and look for more resources, or even sometimes to like after you give people information, asking them what questions do you have and not do you have any questions? Because most people will be like, no, no, no, no. Like what questions do you have? Most times somebody at least comes up with one and it kind of opens that door for a conversation.
Carrie: [00:13:23] Yeah, those open-ended questions are really important in that kind of a situation, and probably giving some wait time to just let them process and think about all of that. You shared a lot about some of these barriers, especially as professionals that we kind of, you know, put up, I guess, are kind of gatekeepers of information. Do you have some specific strategies that could be employed in order to enhance health literacy for families, especially our families who have children who are deaf or hard of hearing?
Sydney: [00:14:02] Yeah. So I always think that before you provide anything, you need to have gone through it yourself. That sounds a little silly to say, but in being transparent, I've done it like I have done the thing of like, you just pick up a resource, you skim over it really quick and you're like, okay, this looks good enough. And you, you hand it to somebody because we know that we're busy and sometimes things happen, but really making sure that we take the time to read this through, is it riddled with a bunch of technical terms that may make it difficult for a family, that maybe that's not one that I'm going to share, or I might modify it in a way and like on my own, make notes on the side for somebody to be able to follow along with it. So looking at it from that standpoint with accuracy and making sure like the readability of the information is good, I think with accessibility, especially with individuals who are deaf and are hard of hearing, not just always providing things in printed form can be helpful. And then even like an aside, thinking about where the printed materials are. So if they're readily available but they're, you know, not in a place that's easily seen, that can be challenging.
Sydney: [00:15:14] So having them in multiple different places around the office could be good. But then also thinking about the way that the media is presented. So printed form tends to be the way that we do things. But we know that like the reading rates for adults are low in this country. We also know too that most people don't actually read. I mean, think about when your doctor gives you something about your health, or even better, when you get medication from the pharmacist. And it's like, here's this pamphlet for you to learn all about it. And you do what? You rip it off and you throw it in the trash. Same thing is happening with most people. So if you can provide something in a video format, and then we know that with videos we always want to make sure like captioning is available. So looking to see if those things are kind of out there as well. And then always, always, always there's something actionable that there's a website or even a statement like, you know, call your pediatric audiologist now or contact your local speech-language pathologist for questions. Here's how you can find one. If you don't have like, give the people something for them to have to do after they've soaked in that information.
Carrie: [00:16:20] And you talked about the different ways of presenting it, like print and like video and different ways like that. Do you feel that actually sitting there with them is helpful too, or that's just probably not always. A way to do it or it's not available. You're not with them?
Sydney: [00:16:44] Yeah.I think sitting with people as they watch it is really beneficial. Well, one, you can assure at least if nothing else, they got the information right, but two, then you're there for whatever questions they may have. I think the internet is a beautiful place. I don't know what I would do without the internet. It provides lots of great resources, but the internet is not a replacement for a professional. So sometimes if we give somebody a resource and we're not there to help guide and scaffold their understanding of what is available, they turn to the internet. And sometimes they may get really good responses and advice, and sometimes they're getting advice and responses that were going, oh no, that's definitely not where we need to be. So kind of handholding. I don't see it as hand-holding. I see it more so as like you're ensuring that people at least have the baseline of what they should.
Carrie: [00:17:45] And. Going off of that. You know, I know all of us use like social media, whether it's, you know, Instagram, Facebook, TikTok, all of that good stuff that is out there. How how can families really discern reliable and accurate health information because they're getting it from these different avenues?
Sydney: [00:18:12] Yes. And I think that's where the tricky part comes in. Right. Because as professionals, to a certain extent, we have a little bit of training of how to evaluate for this information of being good. But if you're a family and you're like, I'm just grasping for anything, you may not have the skills to do that. So the one thing that I look for when I'm looking for any type of support is, is this citing other resources? Right. So one person should not be like the sole idea bank, even when you look at the CDC website, which is very helpful when looking at different information, they are citing research articles or other places for where they got some of the things that they're supporting. So for families, I think always looking to see like are they referencing some other bodies of work in some aspects is going to be good because you know that they're not just relying on themselves, they're using something else. To kind of seeing like across different things. And now this is going to take a little work. Sometimes we like having that one stop shop of I got this and I'm good to go and I'm walking out the door, but especially if you don't know a lot of information about it, I think getting a couple of different things. And pulling from multiple places is going to be beneficial and helpful, because then you're able to do a little bit more of a comparison of what this particular resource says, that this resource says and what this resource says as well.
Carrie: [00:19:41] Yeah, which can kind of be overwhelming for families. As we shared at the beginning, you know, 90% of families, this is the first time that they're going through that. And if they have these different resources that they're looking at, how can families really make that informed decision as far as like, which one should I be? You know, I guess believing or kind of investing so that they're making the best decision for their child.
Sydney: [00:20:16] Yeah. So I think that doing your own research is good. I am a big personal believer in, like, we are our own health advocates. Like we have to have understanding, but that's where professionals come in too. So like, even if you've kind of looked at a couple of different resources and you still have questions, reach out to reach out and get professional support and help. And I know that sometimes that comes with a cost, but there are definitely opportunities out there that are not as expensive. Um, or places I think where you can like basically phone in a question and see if you're able to get a response. I think that that helps alleviate a little bit of the burden on families like your goal is to be informed, but your goal is not to become the doctor. So you may have to do a little bit of your own research, but you don't have to take on fully understanding and comprehending everything on your own.
Carrie: [00:21:10] And kind of on the flip side, to help families along, what can we as communication professionals, speech-language pathologists, audiologists, teachers of the deaf, anybody kind of related in our field? What role can we play in educational programs or initiatives to really address health literacy with families?
Sydney: [00:21:33] Yeah, I think the biggest thing is looking at the readability of text and start curating resources. So I always like to have multiple resources that talk about the same thing, but they might talk about it in a slightly different manner. So depending on who's in front of me, I'm not just constantly saying like, here's here's this information on this, it's no, you're able to modify and adapt for the individual and the needs that are in front of you. And then I think we have to spend time. And I know that time is limited. Like, this sounds lovely. And in a perfect world, we do this, but we do need to have time within our days and our schedules to look for these resources we do not know at all. Like I love audiology. If I could, I would be dual certified, but there's so much that I don't know and it would be an injustice to the people that I serve to try to like, give them all of this information and say, here you go. Like, no, no, maybe I have 1 or 2 pieces of information about audiology, and then I'm putting it back on, like referring to the professional helping to direct them and kind of guide them back. And then we as professionals too, can whenever we see some of these initiatives or things take place, like reach out and figure out how we can support and help, and then also to kind of learning from these other people that have started doing some of this work, how to present information that way. I mean, 90% of the things that have come from the Listening SLP are because I couldn't find it somewhere else. And but these were things that I needed or things that I wanted for people to know or to be able to share. So being able to kind of create your own is also something that you can do too.
Carrie: [00:23:24] Yeah. And kind of looking forward. I know you're you have creative mind and the comment that you just made of like I couldn't find it anywhere else. So I did some of that accurate research myself to put something accessible together that might be actionable for someone else. But how do you envision the future of health literacy as a whole?
Sydney: [00:23:51] Oh, I see health literacy coming into play more and more, and I'm really excited to hear that more grad school programs are doing a little bit more with public health and realizing, like the impact of public health within our field, public health impacts every aspect of an individual's life. Being able to have good understanding, like the decisions that we're asking people to make when it comes to health-related things, are going to impact them or their child for the lifetime. So we can't take these things lightly and just be like, okay, well, you're making a decision like, no, people should be able to make well-informed decisions, and the only way they can do that is by fully understanding and grasping all of the information there. So as we see like the not the invention, but like more prevalence of people using video as a way to communicate and things like that, I think we're definitely going to see more of an increase for all populations, but especially like this population, about what exactly like initial steps look like, what follow up looks like and supports that are there.
Carrie: [00:25:04] You. And hopefully, with all of that, we will have more informed parents who, like you said, that have the direct impact on the outcomes of children who are deaf and hard of hearing because they are the number one advocates and they're always going to be there for them.
Sydney: [00:25:25] Yeah, absolutely.
Carrie: [00:25:28] So Sydney, as we kind of wrap up today, is there anything I didn't ask you that you wished I would have asked you?
Sydney: [00:25:37] I don't think so. Um, no. I was just so happy to be here and kind of chat about health literacy. Like, this is definitely been my first love. Um, long before doing anything like super speech-related. I've always loved health literacy and just have seen it as such an important thing that we as professionals just don't talk about enough. But we are now. And so that, I think, is the the best thing that we can do.
Carrie: [00:26:12] Well, Sydney, if there are listeners out there who would like to get a hold of you, how can they do that? How can they find you?
Sydney: [00:26:26] Uh, so you you can find me at the Listening SLP on all social media platforms, dot the listeningslp.com. Or you can send me an email at hello at the listening slp.com.
Carrie: [00:26:41] Okay, well, I will definitely make sure to put those links in the show notes so that people can directly link and follow you and all of your social media platforms, as well as get a hold of you through email. And Sydney, thank you so much for being a guest today on the EmpowEAR Audiology podcast. It was a great conversation about health literacy and where how we need to be thinking in order to be advocates and in our profession, but also for the families and children that we work with on a daily basis.
Sydney: [00:27:20] Yeah. Thank you so much for having me. Really appreciate it.
Announcer: [00:27:24] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 62 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Okay, today I am excited to introduce to all of you Sydney Bassard and she is an ASHA certified Speech-Language pathologist. She received both her Bachelor of Science and Public Health and her Master of Speech Pathology from the University of South Carolina. Sydney is licensed in Virginia, North Carolina, and South Carolina. Her clinical focus areas are working with individuals who are deaf and hard of hearing, and those with literacy challenges. Her motto of listening, learning, and advocating stems from the three principles that guide her clinical practice. Sydney, I want to welcome you to the empowEAR Audiology podcast. Thanks for being here.
Sydney: [00:01:29] Thank you so much for having me, Carrie. I'm really excited.
Carrie: [00:01:32] I'm excited to have this conversation with you, too. Before we dive into today's topic of health literacy, I would love if you could share with our audience a little background of how you ventured into the field of speech-language pathology, and then your interest of working with children and individuals who are deaf and hard of hearing.
Sydney: [00:01:56] Yeah, so I have like an unconventional way that I came into the field. So I actually went to school to be a pharmacist and thought that that was going to be what I was going to do. And then over time, my brother, who's younger than me, got diagnosed with dyslexia and ADHD. So I ended up working for a literacy intervention company and loved the work that I was doing there. It was far better than the hard sciences that I was having to take in order to try to become a pharmacist. So I ended up switching my major and became a public health major, and then ultimately went to grad school to become an SLP. So that's kind of how I got into speech language pathology. And then specifically with the deaf and hard of hearing population, I met a professor who does research in that area, and she was looking for people to help volunteer in her lab. I signed up and said, sure, I'd love to. Like I want to make connections. And that's where I started learning a lot more about this particular population, specifically looking at listening, spoken language and literacy outcomes. And ever since then, I've been here.
Carrie: [00:03:03] Well, yeah. That's exciting. I love hearing everybody's stories of how they kind of venture into it, because everyone has such a lot of people have an unconventional way that they get into it. I also wanted to ask you a little bit about your listeningSLP. I feel like that's how I know you because of a lot of your social media, which is amazing what you put out there. But can you just share about your work experience and your business?
Sydney: [00:03:32] Yeah. Thank you. So I used to work outpatient pediatrics on a cochlear implant team, and I loved what I was doing. But coming from a public health background, one thing that I always was able to notice is when people had a good grasp and understanding of some of the things that they were being asked to do for their child with following up for audiological appointments, whether it was going to weekly speech therapy sessions, charging the device, all of those different things. Right. And so when people had a good understanding, you saw that they did them pretty naturally versus when people didn't have a great understanding. Sometimes it came, it could come off to professionals as if they didn't care. They weren't trying when really it wasn't any of those things. It's that they didn't have a good understanding or knowledge of what they were supposed to do. So I was like, you know, I have all of this knowledge about hearing loss and working with the population from grad school. I would love to just share like little tidbits and things that people could do at home. So it really started on. I just wanted to share about listening and spoken language on Instagram, and it's kind of morphed since then, as my own thinking has morphed a little bit too. And now our goal is really just how do we support language development for deaf and hard of hearing children, and then also to how we can find different resources and supports that families may not know about.
Carrie: [00:04:59] Yeah, well, I know your little tidbits are just like those little bytes of information kind of stick with people. So it's nice to have that. And I know today we had talked ahead of the podcast and wanted to dive deeper into a conversation about health literacy and how that can impact a lot of the families that our listeners are working with. And I can see now that your combination or your background with public health and Speech-Language pathology really kind of tie into this. So on a general level, can you just share with the audience what is health literacy and what are some of those key components of health literacy?
Sydney: [00:05:45] Yes. So health literacy just actually got a new definition. So we can think of it as two kind of constructs. You have personal health literacy. And that's just really more so about the degree to which an individual or a person is able to find, understand and use information in order to make health-related decisions and actions for themselves and others. And then the other one is about organizational health literacy. So that's being able to understand how to navigate and work within a system in order to make those informed healthcare decisions for themselves and for other people. And both of those are based on the CDC definition of what health literacy is to this point. So when I think about health literacy, there's the three A's that we can always have. And this is what I encourage people to think about when we are looking for information or creating information. It should always be accurate, accessible and actionable.
Carrie: [00:06:46] I like that acronym or the accurate, accessible and actionable and. For having those three A's. How can how does that impact the well-being for families and and individuals? How can we make the three A's come alive for families?
Sydney: [00:07:09] Oh, I mean, I personally think that having a good understanding of whatever is going on is like the driving force to really committing to care, but also understanding the importance of it. So when we think about like information needing to be accurate, right, we know that sometimes pseudoscience is excuse me, we know sometimes that pseudoscience is out there. So that just means like information that's not accurate. So whenever we're sharing things we want to make sure that it is accurate. It's based on evidence that's based on the science that we know is there. So that we want to share with families like things that they're actually able to understand from that perspective. Then it should be accessible. So accessibility sometimes is not always in like just the print form. That may be multimedia. It could be video. And then we should always think about the fact that the average reading rate is around eighth grade for adults across the US. So when we are looking for resources, if they have a higher reading level and in order to understand them, meaning that they're filled with professional words and jargon that may not be accessible for people, like for the general public or population and then actionable. So one thing that we know, like coming out of the field of public health, is that information alone is not enough. So it's great that they have accurate information that it was accessible for them. But if there's no actionable steps based on what's being presented, what exactly are they supposed to do with that? And so sometimes too, when we don't talk about what is actionable, that's maybe where we see like a breakdown in communication and fall off with care.
Carrie: [00:08:53] Yeah. Which is kind of leads directly into my next question is like, what are some of the challenges that families face as it relates to health literacy, too? I mean, you talked about this breakdown with actionable items, but it probably breaks down on all of these three A levels.
Sydney: [00:09:17] I think the biggest one that I've seen is like lost to follow up with care. So we see a lot of people who we know in the US. We're really fortunate that we have a newborn hearing screening program that's universal in all 50 states, but people go through that, right. And then there's no sometimes kids have no follow up and no follow up can happen for many reasons, right? The parents just don't follow up. People move. Things happen. Like somebody may be feeling overwhelmed with having a newborn and then also having to do an additional appointment. In addition to like the well-baby appointments, there's so many things that can happen. But when we're talking about after the screening, if it just says your child, you know, did not pass, this is what we want you to do. But it's not like written in a parent-friendly way. If it like the steps are not actionable in the sense of like you just told them that they should follow up, but like a list wasn't provided or hyperlinks to a website for them to make the appointment online weren't provided. Is that actually actionable? Maybe. Maybe not. So we see that, I think on the early end, but then even to his kids kind of progressed. I mean, sometimes people have difficulties where they don't go to mappings or they're not able to make it to mappings. Do they understand the importance of like why we do CI mappings, why going to those appointments are important? Do they understand the importance of speech therapy and not just being like, oh, so my kid can talk, but to have like a better and more accurate understanding of exactly what they're supposed to be doing in order to benefit their kid. And if they're not provided with that information, maybe they just don't know, especially if this is their first encounter with like, children, or if it's their first encounter with like navigating the deaf and hard of hearing space.
Carrie: [00:11:09] Which is statistically about 90% of our families who are kind of navigating through that space. Because a lot of times that the child is the first person that they've met who happens to be deaf or hard of hearing. Do you see? Um. Any other barriers as it relates to maybe cultural differences or language differences that kind of contribute to the health literacy challenges too.
Sydney: [00:11:44] Yeah. So we know that these kind of what sometimes are called disparities in the field exist across the board. And so we see it even with health literacy and how it comes into play, is that information being presented in a way that is culturally mindful. So just because I have an infographic, maybe knowing that, like a family might have distrust of the medical system or people is like giving them a handout and sending them out the door. The best way to do it? Maybe not. If I have a video version of the same thing that shows real people talks about real experiences, maybe that would resonate more, especially if we know that there are people that like, look like them or that are within their culture kind of represented within those spaces. Um, I think too, sometimes, like we as professionals tend to be some of that barrier when it comes to health literacy and health information. We want to think that we're not gatekeepers of information, but I've sat on many different sides with many different families, and sometimes it's the professionals like we are not freely sharing all of the different resources in a responsible way. We might just start rattling off about 5 or 10 things, but what we never did was spend time to send a follow-up with actionable hyperlinks that people can go and look for more resources, or even sometimes to like after you give people information, asking them what questions do you have and not do you have any questions? Because most people will be like, no, no, no, no. Like what questions do you have? Most times somebody at least comes up with one and it kind of opens that door for a conversation.
Carrie: [00:13:23] Yeah, those open-ended questions are really important in that kind of a situation, and probably giving some wait time to just let them process and think about all of that. You shared a lot about some of these barriers, especially as professionals that we kind of, you know, put up, I guess, are kind of gatekeepers of information. Do you have some specific strategies that could be employed in order to enhance health literacy for families, especially our families who have children who are deaf or hard of hearing?
Sydney: [00:14:02] Yeah. So I always think that before you provide anything, you need to have gone through it yourself. That sounds a little silly to say, but in being transparent, I've done it like I have done the thing of like, you just pick up a resource, you skim over it really quick and you're like, okay, this looks good enough. And you, you hand it to somebody because we know that we're busy and sometimes things happen, but really making sure that we take the time to read this through, is it riddled with a bunch of technical terms that may make it difficult for a family, that maybe that's not one that I'm going to share, or I might modify it in a way and like on my own, make notes on the side for somebody to be able to follow along with it. So looking at it from that standpoint with accuracy and making sure like the readability of the information is good, I think with accessibility, especially with individuals who are deaf and are hard of hearing, not just always providing things in printed form can be helpful. And then even like an aside, thinking about where the printed materials are. So if they're readily available but they're, you know, not in a place that's easily seen, that can be challenging.
Sydney: [00:15:14] So having them in multiple different places around the office could be good. But then also thinking about the way that the media is presented. So printed form tends to be the way that we do things. But we know that like the reading rates for adults are low in this country. We also know too that most people don't actually read. I mean, think about when your doctor gives you something about your health, or even better, when you get medication from the pharmacist. And it's like, here's this pamphlet for you to learn all about it. And you do what? You rip it off and you throw it in the trash. Same thing is happening with most people. So if you can provide something in a video format, and then we know that with videos we always want to make sure like captioning is available. So looking to see if those things are kind of out there as well. And then always, always, always there's something actionable that there's a website or even a statement like, you know, call your pediatric audiologist now or contact your local speech-language pathologist for questions. Here's how you can find one. If you don't have like, give the people something for them to have to do after they've soaked in that information.
Carrie: [00:16:20] And you talked about the different ways of presenting it, like print and like video and different ways like that. Do you feel that actually sitting there with them is helpful too, or that's just probably not always. A way to do it or it's not available. You're not with them?
Sydney: [00:16:44] Yeah.I think sitting with people as they watch it is really beneficial. Well, one, you can assure at least if nothing else, they got the information right, but two, then you're there for whatever questions they may have. I think the internet is a beautiful place. I don't know what I would do without the internet. It provides lots of great resources, but the internet is not a replacement for a professional. So sometimes if we give somebody a resource and we're not there to help guide and scaffold their understanding of what is available, they turn to the internet. And sometimes they may get really good responses and advice, and sometimes they're getting advice and responses that were going, oh no, that's definitely not where we need to be. So kind of handholding. I don't see it as hand-holding. I see it more so as like you're ensuring that people at least have the baseline of what they should.
Carrie: [00:17:45] And. Going off of that. You know, I know all of us use like social media, whether it's, you know, Instagram, Facebook, TikTok, all of that good stuff that is out there. How how can families really discern reliable and accurate health information because they're getting it from these different avenues?
Sydney: [00:18:12] Yes. And I think that's where the tricky part comes in. Right. Because as professionals, to a certain extent, we have a little bit of training of how to evaluate for this information of being good. But if you're a family and you're like, I'm just grasping for anything, you may not have the skills to do that. So the one thing that I look for when I'm looking for any type of support is, is this citing other resources? Right. So one person should not be like the sole idea bank, even when you look at the CDC website, which is very helpful when looking at different information, they are citing research articles or other places for where they got some of the things that they're supporting. So for families, I think always looking to see like are they referencing some other bodies of work in some aspects is going to be good because you know that they're not just relying on themselves, they're using something else. To kind of seeing like across different things. And now this is going to take a little work. Sometimes we like having that one stop shop of I got this and I'm good to go and I'm walking out the door, but especially if you don't know a lot of information about it, I think getting a couple of different things. And pulling from multiple places is going to be beneficial and helpful, because then you're able to do a little bit more of a comparison of what this particular resource says, that this resource says and what this resource says as well.
Carrie: [00:19:41] Yeah, which can kind of be overwhelming for families. As we shared at the beginning, you know, 90% of families, this is the first time that they're going through that. And if they have these different resources that they're looking at, how can families really make that informed decision as far as like, which one should I be? You know, I guess believing or kind of investing so that they're making the best decision for their child.
Sydney: [00:20:16] Yeah. So I think that doing your own research is good. I am a big personal believer in, like, we are our own health advocates. Like we have to have understanding, but that's where professionals come in too. So like, even if you've kind of looked at a couple of different resources and you still have questions, reach out to reach out and get professional support and help. And I know that sometimes that comes with a cost, but there are definitely opportunities out there that are not as expensive. Um, or places I think where you can like basically phone in a question and see if you're able to get a response. I think that that helps alleviate a little bit of the burden on families like your goal is to be informed, but your goal is not to become the doctor. So you may have to do a little bit of your own research, but you don't have to take on fully understanding and comprehending everything on your own.
Carrie: [00:21:10] And kind of on the flip side, to help families along, what can we as communication professionals, speech-language pathologists, audiologists, teachers of the deaf, anybody kind of related in our field? What role can we play in educational programs or initiatives to really address health literacy with families?
Sydney: [00:21:33] Yeah, I think the biggest thing is looking at the readability of text and start curating resources. So I always like to have multiple resources that talk about the same thing, but they might talk about it in a slightly different manner. So depending on who's in front of me, I'm not just constantly saying like, here's here's this information on this, it's no, you're able to modify and adapt for the individual and the needs that are in front of you. And then I think we have to spend time. And I know that time is limited. Like, this sounds lovely. And in a perfect world, we do this, but we do need to have time within our days and our schedules to look for these resources we do not know at all. Like I love audiology. If I could, I would be dual certified, but there's so much that I don't know and it would be an injustice to the people that I serve to try to like, give them all of this information and say, here you go. Like, no, no, maybe I have 1 or 2 pieces of information about audiology, and then I'm putting it back on, like referring to the professional helping to direct them and kind of guide them back. And then we as professionals too, can whenever we see some of these initiatives or things take place, like reach out and figure out how we can support and help, and then also to kind of learning from these other people that have started doing some of this work, how to present information that way. I mean, 90% of the things that have come from the Listening SLP are because I couldn't find it somewhere else. And but these were things that I needed or things that I wanted for people to know or to be able to share. So being able to kind of create your own is also something that you can do too.
Carrie: [00:23:24] Yeah. And kind of looking forward. I know you're you have creative mind and the comment that you just made of like I couldn't find it anywhere else. So I did some of that accurate research myself to put something accessible together that might be actionable for someone else. But how do you envision the future of health literacy as a whole?
Sydney: [00:23:51] Oh, I see health literacy coming into play more and more, and I'm really excited to hear that more grad school programs are doing a little bit more with public health and realizing, like the impact of public health within our field, public health impacts every aspect of an individual's life. Being able to have good understanding, like the decisions that we're asking people to make when it comes to health-related things, are going to impact them or their child for the lifetime. So we can't take these things lightly and just be like, okay, well, you're making a decision like, no, people should be able to make well-informed decisions, and the only way they can do that is by fully understanding and grasping all of the information there. So as we see like the not the invention, but like more prevalence of people using video as a way to communicate and things like that, I think we're definitely going to see more of an increase for all populations, but especially like this population, about what exactly like initial steps look like, what follow up looks like and supports that are there.
Carrie: [00:25:04] You. And hopefully, with all of that, we will have more informed parents who, like you said, that have the direct impact on the outcomes of children who are deaf and hard of hearing because they are the number one advocates and they're always going to be there for them.
Sydney: [00:25:25] Yeah, absolutely.
Carrie: [00:25:28] So Sydney, as we kind of wrap up today, is there anything I didn't ask you that you wished I would have asked you?
Sydney: [00:25:37] I don't think so. Um, no. I was just so happy to be here and kind of chat about health literacy. Like, this is definitely been my first love. Um, long before doing anything like super speech-related. I've always loved health literacy and just have seen it as such an important thing that we as professionals just don't talk about enough. But we are now. And so that, I think, is the the best thing that we can do.
Carrie: [00:26:12] Well, Sydney, if there are listeners out there who would like to get a hold of you, how can they do that? How can they find you?
Sydney: [00:26:26] Uh, so you you can find me at the Listening SLP on all social media platforms, dot the listeningslp.com. Or you can send me an email at hello at the listening slp.com.
Carrie: [00:26:41] Okay, well, I will definitely make sure to put those links in the show notes so that people can directly link and follow you and all of your social media platforms, as well as get a hold of you through email. And Sydney, thank you so much for being a guest today on the EmpowEAR Audiology podcast. It was a great conversation about health literacy and where how we need to be thinking in order to be advocates and in our profession, but also for the families and children that we work with on a daily basis.
Sydney: [00:27:20] Yeah. Thank you so much for having me. Really appreciate it.
Announcer: [00:27:24] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 61: empowEAR Audiology - Valli Gideons
Announcer: [00:00:00] Welcome to episode 61 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right, welcome to the empowEAR Audiology podcast. I am going to read a little bio about a return guest that I have on the podcast today, and I'm really excited about our conversation that we are about to have. I have Valli Gideons with me, and she is an author, speaker, and mother of two teenagers who were born with hearing loss with a degree in journalism she transitioned from everyday stories to sharing her family's hearing loss journey to date. Her work has reached millions of people across multiple platforms with an engaged community. She is passionate about her role as an advocate for children who are deaf and hard of hearing. Valli is also the author of the children's book Now Hear This Harper Soars with Her Magic Ears, which she co-wrote with her daughter. Um. And you can also follow her journey at mybattlecall.com. So, Valli, welcome to the empowEAR Audiology podcast.
Valli: [00:01:47] Thank you for having me back.
Carrie: [00:01:49] Well, I'm excited to have you. And for all of our listeners out there, I actually had the opportunity to interview Valli, and she was a guest for episode 29, and we talked a lot about her, um, social media and her blog called The Battle Call. And since that time, she has become a author of the book Through the Fog Navigating Life's Challenges While Raising Kids with Hearing Loss. So I just wanted to encourage all of our listeners to go back and listen to episode 29, which I will link up in the show notes today, and you can hear a lot more about her story of raising her two children with cochlear implants, and also about her social media reach with my battle call. But again, welcome. Thank you for being a return guest. I was excited that your book was published. I know it was in the works the last time we were together. Um, and I'm still bummed we haven't met in person yet.
Valli: [00:02:55] I am also bummed because I see you in pictures at conferences, and when one I'm always sad I'm not there, I have the biggest FOMO. And then also you're always in other. You're in pictures with other people who I may know virtually but haven't met in person, and I just get very jealous. So someday.
Carrie: [00:03:15] Someday it's going to happen. It's going to.
Valli: [00:03:17] Happen one day.
Carrie: [00:03:18] Going to happen.
Valli: [00:03:18] Yes.
Carrie: [00:03:19] Well, I know that people can go back and listen to episode 29, but just to give everybody a frame of reference for Through the Fog and what we're going to talk about, is there anything you just want to give a background about for your kids or your backstory?
Valli: [00:03:38] When was episode 29? What was the date? I couldn't goodness.
Carrie: [00:03:43] I'd have to go back and look. I want to say, I mean, it was before you had your children's book. You were just releasing it and remember I had just ordered it.
Valli: [00:03:58] Okay, because that was February 2020.
Carrie: [00:04:01] Okay. So I think it was right after that because you talked about having to cancel all of your, like, book. You know, you were going to go on your tour with Harper and then we shut down.
Valli: [00:04:14] Yes. Wow. That seems like yesterday. And it seems like a lifetime. So, yeah, I mean, I'm not going to bore your audience. You're my bio. My gosh, that's embarrassing. It's kind of long, but, yeah, I'm just, uh. Now my kids are. Well, now a junior and senior in high school. Battle and Harpe; Battle’s the oldest. He's who the blog is named after. And I started writing about kind of what it was like raising two kids with hearing loss and being a military wife and, um, all different aspects of my life, but particularly, you know, focused in on what it was like to raise two kids with hearing loss. So.
Carrie: [00:05:00] Yeah. And so you went from this blog and social media presence to, hey, I'm going to write a book. So how did that what prompted you to go from that blog to a book?
Valli: [00:05:14] It probably depends on what day you asked me if the story changes. Um, because it's a blur. It's a bit of a fog, but I didn't actually have any motivation to write a book, so it's just kind of still baffles me that one came to fruition. That was my story. I thought our next book would be another children's book, this one about B attle, because the first one is about Harper, and we're creatively that one's in the works. But. I think what it how it initially came to be was I was doing a lot of speaking engagements, and I thought it wouldn't it be nice to have something when I am there to, for people to leave with? There was more about my story, not my kids. And so I talked to one of my best friends from college, Vinnie. She writes the opening, the introduction in the book. She had helped edit my children's book, and I asked her if she'd be willing to help me edit some essays that I'd already written together, and just I was going to self publish and it wasn't going to be a big to do. Oh my gosh, I think it must have been getting Vinny involved because what she did, she does nothing.
Valli: [00:06:36] Halfway. She printed out everything that she dug and dug and printed out everything I had written. And she's like, I'm going to send this to you. I want you to print it, and I want you to lay it out on your dining room table. And when I did that first I was overwhelmed. It was like 25,000 plus words. And the themes were just jumping off the pages, which was navigating, navigating through the fog. It was just I didn't purposely have that metaphor. It was just all over the place. And then she's like, I think this is more than just putting some essays together. I think you really should rethink this. And then that's kind of where we started adding, you know, I added more stories, lengthened stories. It if I had been more patient, the book probably would have been fleshed out even more because, you know, you put these kind of deadlines in your head. And so I was trying to really make that deadline. Um, so and at a certain point, you think, okay, I'm done, I need to just stop or it'll never. You hear people or spend 20 years writing their book.
Carrie: [00:07:49] Right.
Valli: [00:07:50] So that's kind of how it evolved.
Carrie: [00:07:53] Yeah. So you were talking about spreading everything out on your dining room table, and then the theme kind of popped out like through the fog. Do you want to expand any more on the title and.
Valli: [00:08:08] Well, I think I realized that in every experience in my life, I had gone through, like most people, like, periods that felt like you're kind of in a fog. You don't have your footing, you can't see clearly. And then after the fog comes the light, the rainbow, after the storm. And like I realized that pattern was just kind of throughout every experience I had had. And it I mean, it was really profound. During the initial hearing loss, when Battle was identified with hearing loss at birth, it literally felt like we were living in a fog. I mean, like I can remember like yesterday and he's 18. Like I can remember just feeling a fog and then just realizing how we got we got through that. And then there's another fog and then we get through that and it's just a constant all. And so the theme for me is just always keep looking for the light like fog was going to come and go. It'll be dense sometimes it'll be hazy sometimes, but there is always light. You just have to believe. Yeah. I mean it's so corny, but it actually, no.
Carrie: [00:09:22] It's not corny.
Valli: [00:09:23] It was an actual pattern in my life that I didn't ever really put together.
Carrie: [00:09:30] I was thinking about you. I was just sharing that. We drove down to Charlotte from Ohio a couple of days ago, and I would say 80% of the trip is going through West Virginia and Virginia, and you're driving through the mountains. And it was I knew we had this podcast coming up about through the fog. And I'm like, this is so true, because that's exactly what I was going through, through the mountains. I mean, it's just a good visual. And you're driving through the mountains and it's clear and then like one second later you can't see in front of your headlights because there's such dense fog. And then you get through and there's little patches of fog and then there's sunlight. So it is a very good visual for your book. And I was thinking about you as I was driving.
Valli: [00:10:15] I love that, you know, I just hadn't thought of this either. But we live. I write about it. I think in the opening chapter about we have settled in our favorite little beach town in Southern California that's known for what they call June Gloom. It's a coastal fog, and we kind of live up a canyon, but we can see the ocean like I'm looking at it right now, but the fog rolls in. It's just part of what living here is like. And then almost always, you can it's guaranteed that eventually it's going to part and you're going to see the sun. And I've never stopped appreciating like that. Cool coastal dewiness reminds you where you live. You know, you can smell it, you can feel it, but you can't see the ocean. And then it clears and it. And I'm grateful for it every time. Like my kids are annoyed by I'm. It's my favorite sun. It's my favorite sunshine day. Like, because the sky gets blue. The air is crisp. It's like it's so perfect and I live. This is where we live. We live in a fog of coastal fog.
Valli: [00:11:27] Yeah.
Carrie: [00:11:27] So again, a great analogy for the title of your book. So and so when you had all this on your, on your table with all of these papers and different stories and essays that you have written, can you share how you really thought about your chapters and how they were set up that collection?
Valli: [00:11:53] My process was kind of an interesting one. I think initially it would seem that it would have made sense to start in chronological order, but then somewhere along the way, I just left that whole idea and kept adding stories from childhood. Or as when I'm a newlywed or.
Valli: [00:12:20] Um.
Valli: [00:12:22] Because what that really and one of my editors was not such a fan of that. She's like, I think it would be, you know, here we are in chapter 15, and I'm talking about my marathon before I have kids, and I got hypothermia and went down. And it's a whole kind of signature kind of part in my running journey. She's like, I think if that came before, it would make more sense about some of the feelings you're having once you have kids. And I'm like, but for me, what makes sense is. I didn't learn the lessons in life linearly. And so I didn't want the story to read. I didn't want to say. For you to be reading it and go, oh yeah, that makes sense. Oh, it makes sense that you married someone in the military because your were military child, it's like, um. Because I think even talked about my childhood. Being in a military family comes somewhere in the middle, middle of the book, where I start with meeting my husband in the beginning of the book. So I feel like it was just organic how that kind of came together. It did annoy a couple people who wanted those, you know, to be more of an obvious, I shouldn't say, annoyed. But, you know, they wanted the metaphors to be more obvious. And I was like, but it hasn't been obvious.
Carrie: [00:13:53] And probably some of those stories, you didn't really know what the message was until you were later on and reflecting on it. You didn't know what that was in the moment. So it makes sense that when it kind of was clear to you to put it at that point in your life or the book.
Valli: [00:14:12] Yeah. And I would I would be curious. My daughter just reread the book this summer.
Valli: [00:14:18] Oh, did she picture.
Valli: [00:14:19] Of her sitting in our backyard in our pomp? What are the pompous chairs?
Valli: [00:14:24] Oh, yeah.
Valli: [00:14:25] A papasan chair. It's like those big cushion chairs, outdoor chairs. And she's sitting in it reading. And first she was like, mom, that's a really good book.
Valli: [00:14:39] Which I thought was cute.
Valli: [00:14:40] She complimented me, but she said, yeah, I didn't even realize like some of the the themes till I reread it the second time. Like it made more sense and I thought, oh, that's kind of cool. She knows me. And she still picked up on something different.
Carrie: [00:14:56] And that was one of my questions later on too, is did your kids read the book and what what was their reaction reading about themselves from your point of view.
Valli: [00:15:10] Yeah, so battle hasn't read it. I think he might have read his one chapter. That's like kind of a love letter to him. I left it on his bed with a little note and said, I know you're not going to read the whole book, but, you know, I think it was on his birthday. And I was like, but this is for you. Like, I don't know if he read it, but Harper was my first reader. She read it when I got my a proof copy, and she read it when it first came out, and then she just reread it. So like a year later. And her reaction, she's like, it's really weird to read because I know you, but you're you're you're a mom. But then you were like a you were like a person. You were a child.
Valli: [00:15:52] You were.
Valli: [00:15:53] A newlywed. Like I you know how kids don't really see them, their parents that way. And she's like, and you're talking about me. And it's weird because I was there, but I don't remember that. And so it was I think it just a lot of light bulbs went off for her.
Valli: [00:16:11] That's so neat.
Carrie: [00:16:12] Well, hopefully that's supportive. Yeah. Well Battle read it like when you know he's 35.
Valli: [00:16:20] Yeah.
Valli: [00:16:21] And if he doesn't want to read it I think he's not not reading it for any reason other than just. Hasn't made the time to do it, so.
Valli: [00:16:31] Yeah, but.
Valli: [00:16:32] She's more, you know, she's my writer, so I think. It was more interesting for her because she's. And she probably likes that she's, you know, the star of a book.
Carrie: [00:16:43] Well, throughout the book, you also write a lot about what you were so vulnerable and open, sharing different stages of, you know, grief and shock and just kind of coming to terms with things. What was. How was it to write about all of that, knowing that anybody can buy this book and read it?
Valli: [00:17:09] I think the only way you can publish a book that's so personal is you can't think about that. You cannot be self-conscious. Like sometimes. Now I'll think, oh my gosh, what if I decide I actually don't want to share that? I can't. That's out of the, you know, the genie's out of the bottle, but I just didn't think of it that way. I just was telling my story. And I'm not telling anyone else's story. I think that's the key is to stay true, to like my siblings see certain things differently than I do. My mom sees things differently. Sure, my husband would. My kids. I'm not very careful not to tell their story because I didn't.
Carrie: [00:17:58] Ask you about your husband. Did he read the book?
Valli: [00:18:01] I don't think he's read it completely either. I think his fear. Is it'll make him feel bad for. Are guilty for so much of the time not being there because of his military career. And I think he already feels guilty about that. And I think he fears that this will make him feel certain way. And I'm like, well, don't flatter yourself. It's not. It's not that much about you.
Valli: [00:18:35] It's about my experience.
Valli: [00:18:36] But that is a. That was a big part of what made it so hard. I was often doing it alone. Yeah, it was hard.
Carrie: [00:18:44] Yeah, well, I mean, putting those words out for other people who are going through the fog in their own journey, I'm sure is helpful to know that, hey, there's other people that have gone through the struggles but have seen the the light too.
Valli: [00:19:03] Yeah.
Valli: [00:19:05] I, I just love storytelling, I always have, I love reading and hearing other people's stories. And so probably the most meaningful thing that's happened besides having this for my kids, for them someday, is having people who connect in different parts resonate parts you would never expect, like the story I shared about being on my yoga mat and having a complete breakdown. I've had quite a few people say I have had that moment over something different, but literally come to Jesus moment on a yoga mat. And runners of the parts of my marathon training have resonated with runners. A lot of people about grief, of losing people because my dad and he. It's not a I'm not giving anything away, but he dies when he's 50 and that really shapes me. And people who have lost loved ones particularly young, that really resonates. And I love that because it just connects us.
Carrie: [00:20:18] Yeah, well I had I'm going to ask you if you have a favorite chapter, but I picked out a couple of points that kind of resonate, resonated and I thought would resonate with listeners too. So do you want to share your favorite chapter, or do you want to hear some of the things that I picked out?
Valli: [00:20:37] Oh, really excited and curious to hear what you have to say, and I would. I have some chapters. Like every once in a while I'll skim through it when somebody refers back to something because it's almost like it's a big blur. You would think I would know where every single word was, but like someone will say, I loved this part and I have to go digging for it, and sometimes I'll skim and. And there are still parts that make me cry. And I would say one of the most. Poignant moments.
Valli: [00:21:13] Um.
Valli: [00:21:14] There's a lot, but. I love the story I shared about my dad in the van, my mom backing into his car. With her custom van. And then I also love the description I use sharing me and my son snorkeling together and seeing that sea turtle and him putting his hand on my shoulder and giving me like a thumbs up that you've got this mom, because that visual is still crystal clear in my head. And now I have it in like an essay. So, you know, when I'm, you know, God willing, 9500 years old, that memory will still be there. But they're like your kids. They're all your favorites.
Carrie: [00:22:04] Okay, well, I have a couple of things that I thought I would ask, so. And I and I wrote something down. So I'm going to read a couple of things because like you said, you probably need to jog your memory. Right. So in chapter 16 it was titled I Am here. And you talk about throwing up the white flag and dragging yourself into a therapy room. And I think as women, as mothers, as caretakers, we sometimes think we need to carry all of that weight and be strong at all times. Can you share how you came to the realization that we, whoever is listening, also need to throw up that white flag in certain situations?
Valli: [00:22:48] I hope I have friends that write about it. They write about therapy. They write about depression, mental health. Like a lot of my online circle of authors and friends write a lot about it. And I think the more we normalize. These discussions that motherhood. Parenting is hard. A military. Being a military spouse is hard, like losing a loved one is hard. Having a child identified with something out of the ordinary that requires extra medical is hard and just being allowed and safe to say. It's hard. It's both. I think I do write about it can be both. It can be hard and amazing and it doesn't make you feel. It shouldn't make you. Anyone think you're a bad mother. You're complaining. You don't. You're not grateful. Um, I think therapy. I'm a huge fan of therapy. I am a huge fan for my kids, for my marriage, for myself. Like I think it's so even when things are good. To just reflect and make sense of things. I think it's just I think it's really healthy. So I went a long time in life thinking I just needed to suck it up and put on this. I don't know, perception that I was just so strong. And I had a moment. I'm not going to go into it, but where I was walking my dog when it happened, and I just felt the weight of what I had endured on my shoulders like. This has been hard. This has been really hard.
Valli: [00:24:43] We need to talk about the hard more. So people don't feel as alone because most likely someone else is going to throw their hands up and say, oh my gosh, me too. Like, I had a my first piece I wrote about military being a military spouse and deployment.
Valli: [00:25:30] Went.
Valli: [00:25:31] Viral.
Valli: [00:25:33] And.
Valli: [00:25:33] I could not believe how many people were saying, oh my gosh, me too! I've always wanted to say this, but I was afraid I was going to be judged. People were going to say, well, you knew what you were getting into or you're not, you know, you're not supportive, you're not patriotic, you're not this, you're not that. And it was like almost like ripping the band aid off to say, yeah, I, I'm married to a colonel in the Marine Corps. I've been with him his entire career. I've never stood in the way. I've been a supportive spouse, and it's been hard.
Carrie: [00:26:11] Yeah, well, I think putting that out there so other people realize it's okay to put the white flag up and wave it and be like and have a community of people that you can go to and talk to. And whether it's professional or your so-called friends and family around you is so important too. Yeah.
Valli: [00:26:34] For sure.
Carrie: [00:26:36] And then there's another chapter that you talk about being in the trenches and how one day you woke up and you have teenagers. So and that chapter, you reflect on decisions and emotion that you had and have as a hearing parent raising two deaf kids. So statistically speaking, that's probably like 90 to 90% of families. What can you say to parents or professionals listening today of like being in the trenches at the moment? And then all of a sudden you have they they grow up, but reflectively as a hearing parent, do you have any anything that you want to say?
Valli: [00:27:18] Oh, geez. Well, first, you know, it's very annoying when you have two toddlers, but when people say go so fast. But it's true. The day, the days are long and the years are fast. Is that the saying? But. Particularly people who are in a really hard maybe phase or season. You know, I can think back to like the pulling the devices off, if that's the route that, you know, if you're dealing with hearing aids or cochlear implants and. You just think it's never going to end and it totally ends. It's like phase. And I think that's why another theme in addition to The Fog is grace. And it took me a long time to be able to give it to myself. And I think that is what I would tell parents is to just give yourself grace through the process. It's, you know, it's challenging and it's okay to. You're going to make mistakes. You're going to sometimes maybe feel judged. You're going to get the opinions of so many people who want to tell you what you should do, how you should do it. I mean, that's just true in parenting in general, but. And with the internet because my babies you know, it's I write about it that, you know, it's before Facebook, it's before there's no social media groups and people can't comment and tell me, you know, I've made the wrong choice, or I should do this or I should do that. Like sometimes. Maybe parents now need it can be helpful to have that social media and. That connection, but it can also be too noisy. Letting the opinions of a few. Drown out what you think you know you've decided is best for your family.
Carrie: [00:29:22] Yeah, that's good advice. I like that it's it is noisy and so how can you kind of clear some of that fog. Right. That you, you talk about so you know and feel in your heart that you've made the best decision for your family.
Valli: [00:29:38] Yeah. I think also be willing. I feel like luckily we were pretty open to pivoting. And learn as we go. I didn't think I had to know it all. And if we had tried something that didn't work, we were kind of open to trying something different. So don't dig in and be set. There's not one way. And each kid is so different. I mean, I have two kids, same syndrome, and they experience it so differently. It's really they should be studied these two. They really should. I mean, I think siblings would be a really interesting. Thing to look at is just how different their experience is.
Carrie: [00:30:32] Right? Yeah, I know we always say like, especially if you have a boy and a girl like you do, like they live under the same household with the same family members, how can they be so different in different things? But it would be interesting to as far as hearing loss goes, to see if there's anything that stands out that way.
Valli: [00:30:53] Yeah, I think it would be. Um, and then the flip side, they're so different. Yet sometimes, like last weekend, we were at my brother's house and the two of them were in the pool together. It was just the two of them. And they were talking. It was probably for like two hours straight.
Valli: [00:31:12] Um.
Valli: [00:31:13] Floating and talking. And I'm like, they have a connection that is like nobody else in this world has, like, the two of them. It's it's really fun to see.
Carrie: [00:31:25] So just a side question. Did they do they have water devices for the cochleas or were they like just trying to read each other's lips or what were they doing.
Valli: [00:31:37] So in this case, they both had their devices on without the water cases, which, you know, normally I'd be like, you know, we're on, we're on a trip. This is a bad idea. But it was like kind of they kind of controlled the environment of just floating.
Valli: [00:31:51] Yeah.
Valli: [00:31:52] But even when like. So Battle will use his water ear and Harper because she still has residual hearing on one side. She's only single a single. What's it called.
Carrie: [00:32:04] Bimodal or. Yeah.
Valli: [00:32:06] Bimodal.
Carrie: [00:32:07] So yeah.
Valli: [00:32:08] Yeah.
Valli: [00:32:09] So she still has a residual hearing which she shouldn't really be able to make out speech as well as she does. But it's as if she's still wearing her devices. It's strange. They can communicate.
Valli: [00:32:25] Um.
Valli: [00:32:26] Yeah. It's.
Valli: [00:32:27] Yeah, it's.
Carrie: [00:32:28] Well, that was a little side note when you said that. I was like, oh, that's interesting. That connection between between them.
Valli: [00:32:35] But parents piece of advice, if your child is not 18 and doesn't understand actually, you know, impulse control and all this stuff, I would never let them be in a, in the water with their devices on and think they're not going to go under like.
Valli: [00:32:51] Right. Yeah. It's been a lot of.
Valli: [00:32:53] Years in the making and all their cousins know and everything. So like you're not going to jump in and Cannonball and.
Carrie: [00:33:00] Yeah yeah yeah.
Carrie: [00:33:02] And then you have a mini heart attack in the process. Right. Thinking about that. Oh so you did know earlier that the days are long, but the years are short. And since writing and publishing this book, Battle and Harper are a little bit older and entering almost into, like the young adulthood of you, late teens and 20s. Before long, if you could add another chapter to Through the Fog, what would that title be and would do you have any thing that you jumps out to share?
Valli: [00:33:40] Oh, dear.
Valli: [00:33:42] That chapter still being written because now we're in the Battles going into senior year, and he's been been pretty heavily recruited for football. So we're going through this whole process pretty I mean, it's early in. He still has a senior year ahead of him. But it's the preparing to launch. And I know this is going to be filled with lots of stuff.
Carrie: [00:34:09] Yeah.
Carrie: [00:34:10] So that's the title preparing to launch.
Valli: [00:34:12] Right to launch.
Carrie: [00:34:14] Love it.
Valli: [00:34:15] I'm tethering. Just trying to mentally prepare. Um, baby steps I can't imagine. I mean, I still can't imagine.
Carrie: [00:34:26] Yeah, it goes like you said. It goes really fast. I have a daughter who will be a senior this year too. So that lots of decision to be made in the next year.
Valli: [00:34:38] Yeah. It's again, how did we get here? I'm so proud of the kids though. I mean, I'm it is really this stage in life is so fun to see who like they really are. You know, you see who they're becoming. And I love hanging out with them. You know, it's traveling is fun. Like, just hanging out is fun. They're really interesting, cool people. I like the people they are so.
Carrie: [00:35:08] Yeah.
Valli: [00:35:09] Worth the wait.
Carrie: [00:35:10] It's worth the wait. In the moment it's hard. But reflectively you get through and you're always going to be their mom. So you're always going to have some kind of fog that you're going to be looking through.
Valli: [00:35:25] Exactly.
Valli: [00:35:26] That's what my mom says. She's like, you think kids are stressful? Wait till you have grandkids. You know, you worry about them even more. I'm like, oh dear goodness. But that's what for anyone who's in the fog, you know, and you in the young, you know, the younger years.
Valli: [00:35:45] Um, it's.
Valli: [00:35:46] Just like, stay the course. It's gonna pay off everything you invest in your kids. It does. It pays off.
Carrie: [00:35:53] And then you enjoy it differently later. Later on.
Valli: [00:35:58] Yes.
Valli: [00:35:59] That's the goal.
Carrie: [00:36:00] Yeah.
Carrie: [00:36:00] So wrapping up today Valli with today's episode. Do you have any final thoughts that you want to share?
Valli: [00:36:09] Besides, I hope we get to see each other in person.
Valli: [00:36:12] No.
Valli: [00:36:14] I don't know. I hope that people will support the book. It's, you know, it's a labor of love. I don't have a marketing team. It's just me. It's available on Amazon. I love hearing people's feedback. Um, the reviews are very helpful. And then just following along on social media so we can connect. I really read every comment. I respond to as many as I can. My message is like, I love connecting with people and hearing their stories. So, um. I would love to hear from people.
Carrie: [00:36:51] Well, I just want to say thank you again for being a guest on the empowEAR Audiology podcast. And like I said earlier, I will link up the previous episode if people want to go back to that. And as you said, people can get onto your web page, My Battle Call and I can link that up too. And they can find your book on Amazon and order it and have it delivered right to their house, too.
Valli: [00:37:19] Oh, I know.
Valli: [00:37:19] What I was going to say is for organizations, audiologists, class classes, groups, I can also do bulk author copies for a better rate and ship them right to those. I've done it for quite a few. Our audiologist has a stack of them on hand that she gives out to new parents, and so somebody if anyone's interested in that, I'd love to offer that for people. They can contact me through my website. I think my email address is on there or through any of my social media. They can message me, just say they heard about the book. Book bundles.
Carrie: [00:37:57] All right. Well, that's a great way to get the book out there, and probably a great tool for parents to have and read. So again, thank you, Valli, for being a guest. And, um, I can't wait to meet you in person sometime soon.
Valli: [00:38:14] Thanks, Carrie. Take care.
Announcer: [00:38:16] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 61 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right, welcome to the empowEAR Audiology podcast. I am going to read a little bio about a return guest that I have on the podcast today, and I'm really excited about our conversation that we are about to have. I have Valli Gideons with me, and she is an author, speaker, and mother of two teenagers who were born with hearing loss with a degree in journalism she transitioned from everyday stories to sharing her family's hearing loss journey to date. Her work has reached millions of people across multiple platforms with an engaged community. She is passionate about her role as an advocate for children who are deaf and hard of hearing. Valli is also the author of the children's book Now Hear This Harper Soars with Her Magic Ears, which she co-wrote with her daughter. Um. And you can also follow her journey at mybattlecall.com. So, Valli, welcome to the empowEAR Audiology podcast.
Valli: [00:01:47] Thank you for having me back.
Carrie: [00:01:49] Well, I'm excited to have you. And for all of our listeners out there, I actually had the opportunity to interview Valli, and she was a guest for episode 29, and we talked a lot about her, um, social media and her blog called The Battle Call. And since that time, she has become a author of the book Through the Fog Navigating Life's Challenges While Raising Kids with Hearing Loss. So I just wanted to encourage all of our listeners to go back and listen to episode 29, which I will link up in the show notes today, and you can hear a lot more about her story of raising her two children with cochlear implants, and also about her social media reach with my battle call. But again, welcome. Thank you for being a return guest. I was excited that your book was published. I know it was in the works the last time we were together. Um, and I'm still bummed we haven't met in person yet.
Valli: [00:02:55] I am also bummed because I see you in pictures at conferences, and when one I'm always sad I'm not there, I have the biggest FOMO. And then also you're always in other. You're in pictures with other people who I may know virtually but haven't met in person, and I just get very jealous. So someday.
Carrie: [00:03:15] Someday it's going to happen. It's going to.
Valli: [00:03:17] Happen one day.
Carrie: [00:03:18] Going to happen.
Valli: [00:03:18] Yes.
Carrie: [00:03:19] Well, I know that people can go back and listen to episode 29, but just to give everybody a frame of reference for Through the Fog and what we're going to talk about, is there anything you just want to give a background about for your kids or your backstory?
Valli: [00:03:38] When was episode 29? What was the date? I couldn't goodness.
Carrie: [00:03:43] I'd have to go back and look. I want to say, I mean, it was before you had your children's book. You were just releasing it and remember I had just ordered it.
Valli: [00:03:58] Okay, because that was February 2020.
Carrie: [00:04:01] Okay. So I think it was right after that because you talked about having to cancel all of your, like, book. You know, you were going to go on your tour with Harper and then we shut down.
Valli: [00:04:14] Yes. Wow. That seems like yesterday. And it seems like a lifetime. So, yeah, I mean, I'm not going to bore your audience. You're my bio. My gosh, that's embarrassing. It's kind of long, but, yeah, I'm just, uh. Now my kids are. Well, now a junior and senior in high school. Battle and Harpe; Battle’s the oldest. He's who the blog is named after. And I started writing about kind of what it was like raising two kids with hearing loss and being a military wife and, um, all different aspects of my life, but particularly, you know, focused in on what it was like to raise two kids with hearing loss. So.
Carrie: [00:05:00] Yeah. And so you went from this blog and social media presence to, hey, I'm going to write a book. So how did that what prompted you to go from that blog to a book?
Valli: [00:05:14] It probably depends on what day you asked me if the story changes. Um, because it's a blur. It's a bit of a fog, but I didn't actually have any motivation to write a book, so it's just kind of still baffles me that one came to fruition. That was my story. I thought our next book would be another children's book, this one about B attle, because the first one is about Harper, and we're creatively that one's in the works. But. I think what it how it initially came to be was I was doing a lot of speaking engagements, and I thought it wouldn't it be nice to have something when I am there to, for people to leave with? There was more about my story, not my kids. And so I talked to one of my best friends from college, Vinnie. She writes the opening, the introduction in the book. She had helped edit my children's book, and I asked her if she'd be willing to help me edit some essays that I'd already written together, and just I was going to self publish and it wasn't going to be a big to do. Oh my gosh, I think it must have been getting Vinny involved because what she did, she does nothing.
Valli: [00:06:36] Halfway. She printed out everything that she dug and dug and printed out everything I had written. And she's like, I'm going to send this to you. I want you to print it, and I want you to lay it out on your dining room table. And when I did that first I was overwhelmed. It was like 25,000 plus words. And the themes were just jumping off the pages, which was navigating, navigating through the fog. It was just I didn't purposely have that metaphor. It was just all over the place. And then she's like, I think this is more than just putting some essays together. I think you really should rethink this. And then that's kind of where we started adding, you know, I added more stories, lengthened stories. It if I had been more patient, the book probably would have been fleshed out even more because, you know, you put these kind of deadlines in your head. And so I was trying to really make that deadline. Um, so and at a certain point, you think, okay, I'm done, I need to just stop or it'll never. You hear people or spend 20 years writing their book.
Carrie: [00:07:49] Right.
Valli: [00:07:50] So that's kind of how it evolved.
Carrie: [00:07:53] Yeah. So you were talking about spreading everything out on your dining room table, and then the theme kind of popped out like through the fog. Do you want to expand any more on the title and.
Valli: [00:08:08] Well, I think I realized that in every experience in my life, I had gone through, like most people, like, periods that felt like you're kind of in a fog. You don't have your footing, you can't see clearly. And then after the fog comes the light, the rainbow, after the storm. And like I realized that pattern was just kind of throughout every experience I had had. And it I mean, it was really profound. During the initial hearing loss, when Battle was identified with hearing loss at birth, it literally felt like we were living in a fog. I mean, like I can remember like yesterday and he's 18. Like I can remember just feeling a fog and then just realizing how we got we got through that. And then there's another fog and then we get through that and it's just a constant all. And so the theme for me is just always keep looking for the light like fog was going to come and go. It'll be dense sometimes it'll be hazy sometimes, but there is always light. You just have to believe. Yeah. I mean it's so corny, but it actually, no.
Carrie: [00:09:22] It's not corny.
Valli: [00:09:23] It was an actual pattern in my life that I didn't ever really put together.
Carrie: [00:09:30] I was thinking about you. I was just sharing that. We drove down to Charlotte from Ohio a couple of days ago, and I would say 80% of the trip is going through West Virginia and Virginia, and you're driving through the mountains. And it was I knew we had this podcast coming up about through the fog. And I'm like, this is so true, because that's exactly what I was going through, through the mountains. I mean, it's just a good visual. And you're driving through the mountains and it's clear and then like one second later you can't see in front of your headlights because there's such dense fog. And then you get through and there's little patches of fog and then there's sunlight. So it is a very good visual for your book. And I was thinking about you as I was driving.
Valli: [00:10:15] I love that, you know, I just hadn't thought of this either. But we live. I write about it. I think in the opening chapter about we have settled in our favorite little beach town in Southern California that's known for what they call June Gloom. It's a coastal fog, and we kind of live up a canyon, but we can see the ocean like I'm looking at it right now, but the fog rolls in. It's just part of what living here is like. And then almost always, you can it's guaranteed that eventually it's going to part and you're going to see the sun. And I've never stopped appreciating like that. Cool coastal dewiness reminds you where you live. You know, you can smell it, you can feel it, but you can't see the ocean. And then it clears and it. And I'm grateful for it every time. Like my kids are annoyed by I'm. It's my favorite sun. It's my favorite sunshine day. Like, because the sky gets blue. The air is crisp. It's like it's so perfect and I live. This is where we live. We live in a fog of coastal fog.
Valli: [00:11:27] Yeah.
Carrie: [00:11:27] So again, a great analogy for the title of your book. So and so when you had all this on your, on your table with all of these papers and different stories and essays that you have written, can you share how you really thought about your chapters and how they were set up that collection?
Valli: [00:11:53] My process was kind of an interesting one. I think initially it would seem that it would have made sense to start in chronological order, but then somewhere along the way, I just left that whole idea and kept adding stories from childhood. Or as when I'm a newlywed or.
Valli: [00:12:20] Um.
Valli: [00:12:22] Because what that really and one of my editors was not such a fan of that. She's like, I think it would be, you know, here we are in chapter 15, and I'm talking about my marathon before I have kids, and I got hypothermia and went down. And it's a whole kind of signature kind of part in my running journey. She's like, I think if that came before, it would make more sense about some of the feelings you're having once you have kids. And I'm like, but for me, what makes sense is. I didn't learn the lessons in life linearly. And so I didn't want the story to read. I didn't want to say. For you to be reading it and go, oh yeah, that makes sense. Oh, it makes sense that you married someone in the military because your were military child, it's like, um. Because I think even talked about my childhood. Being in a military family comes somewhere in the middle, middle of the book, where I start with meeting my husband in the beginning of the book. So I feel like it was just organic how that kind of came together. It did annoy a couple people who wanted those, you know, to be more of an obvious, I shouldn't say, annoyed. But, you know, they wanted the metaphors to be more obvious. And I was like, but it hasn't been obvious.
Carrie: [00:13:53] And probably some of those stories, you didn't really know what the message was until you were later on and reflecting on it. You didn't know what that was in the moment. So it makes sense that when it kind of was clear to you to put it at that point in your life or the book.
Valli: [00:14:12] Yeah. And I would I would be curious. My daughter just reread the book this summer.
Valli: [00:14:18] Oh, did she picture.
Valli: [00:14:19] Of her sitting in our backyard in our pomp? What are the pompous chairs?
Valli: [00:14:24] Oh, yeah.
Valli: [00:14:25] A papasan chair. It's like those big cushion chairs, outdoor chairs. And she's sitting in it reading. And first she was like, mom, that's a really good book.
Valli: [00:14:39] Which I thought was cute.
Valli: [00:14:40] She complimented me, but she said, yeah, I didn't even realize like some of the the themes till I reread it the second time. Like it made more sense and I thought, oh, that's kind of cool. She knows me. And she still picked up on something different.
Carrie: [00:14:56] And that was one of my questions later on too, is did your kids read the book and what what was their reaction reading about themselves from your point of view.
Valli: [00:15:10] Yeah, so battle hasn't read it. I think he might have read his one chapter. That's like kind of a love letter to him. I left it on his bed with a little note and said, I know you're not going to read the whole book, but, you know, I think it was on his birthday. And I was like, but this is for you. Like, I don't know if he read it, but Harper was my first reader. She read it when I got my a proof copy, and she read it when it first came out, and then she just reread it. So like a year later. And her reaction, she's like, it's really weird to read because I know you, but you're you're you're a mom. But then you were like a you were like a person. You were a child.
Valli: [00:15:52] You were.
Valli: [00:15:53] A newlywed. Like I you know how kids don't really see them, their parents that way. And she's like, and you're talking about me. And it's weird because I was there, but I don't remember that. And so it was I think it just a lot of light bulbs went off for her.
Valli: [00:16:11] That's so neat.
Carrie: [00:16:12] Well, hopefully that's supportive. Yeah. Well Battle read it like when you know he's 35.
Valli: [00:16:20] Yeah.
Valli: [00:16:21] And if he doesn't want to read it I think he's not not reading it for any reason other than just. Hasn't made the time to do it, so.
Valli: [00:16:31] Yeah, but.
Valli: [00:16:32] She's more, you know, she's my writer, so I think. It was more interesting for her because she's. And she probably likes that she's, you know, the star of a book.
Carrie: [00:16:43] Well, throughout the book, you also write a lot about what you were so vulnerable and open, sharing different stages of, you know, grief and shock and just kind of coming to terms with things. What was. How was it to write about all of that, knowing that anybody can buy this book and read it?
Valli: [00:17:09] I think the only way you can publish a book that's so personal is you can't think about that. You cannot be self-conscious. Like sometimes. Now I'll think, oh my gosh, what if I decide I actually don't want to share that? I can't. That's out of the, you know, the genie's out of the bottle, but I just didn't think of it that way. I just was telling my story. And I'm not telling anyone else's story. I think that's the key is to stay true, to like my siblings see certain things differently than I do. My mom sees things differently. Sure, my husband would. My kids. I'm not very careful not to tell their story because I didn't.
Carrie: [00:17:58] Ask you about your husband. Did he read the book?
Valli: [00:18:01] I don't think he's read it completely either. I think his fear. Is it'll make him feel bad for. Are guilty for so much of the time not being there because of his military career. And I think he already feels guilty about that. And I think he fears that this will make him feel certain way. And I'm like, well, don't flatter yourself. It's not. It's not that much about you.
Valli: [00:18:35] It's about my experience.
Valli: [00:18:36] But that is a. That was a big part of what made it so hard. I was often doing it alone. Yeah, it was hard.
Carrie: [00:18:44] Yeah, well, I mean, putting those words out for other people who are going through the fog in their own journey, I'm sure is helpful to know that, hey, there's other people that have gone through the struggles but have seen the the light too.
Valli: [00:19:03] Yeah.
Valli: [00:19:05] I, I just love storytelling, I always have, I love reading and hearing other people's stories. And so probably the most meaningful thing that's happened besides having this for my kids, for them someday, is having people who connect in different parts resonate parts you would never expect, like the story I shared about being on my yoga mat and having a complete breakdown. I've had quite a few people say I have had that moment over something different, but literally come to Jesus moment on a yoga mat. And runners of the parts of my marathon training have resonated with runners. A lot of people about grief, of losing people because my dad and he. It's not a I'm not giving anything away, but he dies when he's 50 and that really shapes me. And people who have lost loved ones particularly young, that really resonates. And I love that because it just connects us.
Carrie: [00:20:18] Yeah, well I had I'm going to ask you if you have a favorite chapter, but I picked out a couple of points that kind of resonate, resonated and I thought would resonate with listeners too. So do you want to share your favorite chapter, or do you want to hear some of the things that I picked out?
Valli: [00:20:37] Oh, really excited and curious to hear what you have to say, and I would. I have some chapters. Like every once in a while I'll skim through it when somebody refers back to something because it's almost like it's a big blur. You would think I would know where every single word was, but like someone will say, I loved this part and I have to go digging for it, and sometimes I'll skim and. And there are still parts that make me cry. And I would say one of the most. Poignant moments.
Valli: [00:21:13] Um.
Valli: [00:21:14] There's a lot, but. I love the story I shared about my dad in the van, my mom backing into his car. With her custom van. And then I also love the description I use sharing me and my son snorkeling together and seeing that sea turtle and him putting his hand on my shoulder and giving me like a thumbs up that you've got this mom, because that visual is still crystal clear in my head. And now I have it in like an essay. So, you know, when I'm, you know, God willing, 9500 years old, that memory will still be there. But they're like your kids. They're all your favorites.
Carrie: [00:22:04] Okay, well, I have a couple of things that I thought I would ask, so. And I and I wrote something down. So I'm going to read a couple of things because like you said, you probably need to jog your memory. Right. So in chapter 16 it was titled I Am here. And you talk about throwing up the white flag and dragging yourself into a therapy room. And I think as women, as mothers, as caretakers, we sometimes think we need to carry all of that weight and be strong at all times. Can you share how you came to the realization that we, whoever is listening, also need to throw up that white flag in certain situations?
Valli: [00:22:48] I hope I have friends that write about it. They write about therapy. They write about depression, mental health. Like a lot of my online circle of authors and friends write a lot about it. And I think the more we normalize. These discussions that motherhood. Parenting is hard. A military. Being a military spouse is hard, like losing a loved one is hard. Having a child identified with something out of the ordinary that requires extra medical is hard and just being allowed and safe to say. It's hard. It's both. I think I do write about it can be both. It can be hard and amazing and it doesn't make you feel. It shouldn't make you. Anyone think you're a bad mother. You're complaining. You don't. You're not grateful. Um, I think therapy. I'm a huge fan of therapy. I am a huge fan for my kids, for my marriage, for myself. Like I think it's so even when things are good. To just reflect and make sense of things. I think it's just I think it's really healthy. So I went a long time in life thinking I just needed to suck it up and put on this. I don't know, perception that I was just so strong. And I had a moment. I'm not going to go into it, but where I was walking my dog when it happened, and I just felt the weight of what I had endured on my shoulders like. This has been hard. This has been really hard.
Valli: [00:24:43] We need to talk about the hard more. So people don't feel as alone because most likely someone else is going to throw their hands up and say, oh my gosh, me too. Like, I had a my first piece I wrote about military being a military spouse and deployment.
Valli: [00:25:30] Went.
Valli: [00:25:31] Viral.
Valli: [00:25:33] And.
Valli: [00:25:33] I could not believe how many people were saying, oh my gosh, me too! I've always wanted to say this, but I was afraid I was going to be judged. People were going to say, well, you knew what you were getting into or you're not, you know, you're not supportive, you're not patriotic, you're not this, you're not that. And it was like almost like ripping the band aid off to say, yeah, I, I'm married to a colonel in the Marine Corps. I've been with him his entire career. I've never stood in the way. I've been a supportive spouse, and it's been hard.
Carrie: [00:26:11] Yeah, well, I think putting that out there so other people realize it's okay to put the white flag up and wave it and be like and have a community of people that you can go to and talk to. And whether it's professional or your so-called friends and family around you is so important too. Yeah.
Valli: [00:26:34] For sure.
Carrie: [00:26:36] And then there's another chapter that you talk about being in the trenches and how one day you woke up and you have teenagers. So and that chapter, you reflect on decisions and emotion that you had and have as a hearing parent raising two deaf kids. So statistically speaking, that's probably like 90 to 90% of families. What can you say to parents or professionals listening today of like being in the trenches at the moment? And then all of a sudden you have they they grow up, but reflectively as a hearing parent, do you have any anything that you want to say?
Valli: [00:27:18] Oh, geez. Well, first, you know, it's very annoying when you have two toddlers, but when people say go so fast. But it's true. The day, the days are long and the years are fast. Is that the saying? But. Particularly people who are in a really hard maybe phase or season. You know, I can think back to like the pulling the devices off, if that's the route that, you know, if you're dealing with hearing aids or cochlear implants and. You just think it's never going to end and it totally ends. It's like phase. And I think that's why another theme in addition to The Fog is grace. And it took me a long time to be able to give it to myself. And I think that is what I would tell parents is to just give yourself grace through the process. It's, you know, it's challenging and it's okay to. You're going to make mistakes. You're going to sometimes maybe feel judged. You're going to get the opinions of so many people who want to tell you what you should do, how you should do it. I mean, that's just true in parenting in general, but. And with the internet because my babies you know, it's I write about it that, you know, it's before Facebook, it's before there's no social media groups and people can't comment and tell me, you know, I've made the wrong choice, or I should do this or I should do that. Like sometimes. Maybe parents now need it can be helpful to have that social media and. That connection, but it can also be too noisy. Letting the opinions of a few. Drown out what you think you know you've decided is best for your family.
Carrie: [00:29:22] Yeah, that's good advice. I like that it's it is noisy and so how can you kind of clear some of that fog. Right. That you, you talk about so you know and feel in your heart that you've made the best decision for your family.
Valli: [00:29:38] Yeah. I think also be willing. I feel like luckily we were pretty open to pivoting. And learn as we go. I didn't think I had to know it all. And if we had tried something that didn't work, we were kind of open to trying something different. So don't dig in and be set. There's not one way. And each kid is so different. I mean, I have two kids, same syndrome, and they experience it so differently. It's really they should be studied these two. They really should. I mean, I think siblings would be a really interesting. Thing to look at is just how different their experience is.
Carrie: [00:30:32] Right? Yeah, I know we always say like, especially if you have a boy and a girl like you do, like they live under the same household with the same family members, how can they be so different in different things? But it would be interesting to as far as hearing loss goes, to see if there's anything that stands out that way.
Valli: [00:30:53] Yeah, I think it would be. Um, and then the flip side, they're so different. Yet sometimes, like last weekend, we were at my brother's house and the two of them were in the pool together. It was just the two of them. And they were talking. It was probably for like two hours straight.
Valli: [00:31:12] Um.
Valli: [00:31:13] Floating and talking. And I'm like, they have a connection that is like nobody else in this world has, like, the two of them. It's it's really fun to see.
Carrie: [00:31:25] So just a side question. Did they do they have water devices for the cochleas or were they like just trying to read each other's lips or what were they doing.
Valli: [00:31:37] So in this case, they both had their devices on without the water cases, which, you know, normally I'd be like, you know, we're on, we're on a trip. This is a bad idea. But it was like kind of they kind of controlled the environment of just floating.
Valli: [00:31:51] Yeah.
Valli: [00:31:52] But even when like. So Battle will use his water ear and Harper because she still has residual hearing on one side. She's only single a single. What's it called.
Carrie: [00:32:04] Bimodal or. Yeah.
Valli: [00:32:06] Bimodal.
Carrie: [00:32:07] So yeah.
Valli: [00:32:08] Yeah.
Valli: [00:32:09] So she still has a residual hearing which she shouldn't really be able to make out speech as well as she does. But it's as if she's still wearing her devices. It's strange. They can communicate.
Valli: [00:32:25] Um.
Valli: [00:32:26] Yeah. It's.
Valli: [00:32:27] Yeah, it's.
Carrie: [00:32:28] Well, that was a little side note when you said that. I was like, oh, that's interesting. That connection between between them.
Valli: [00:32:35] But parents piece of advice, if your child is not 18 and doesn't understand actually, you know, impulse control and all this stuff, I would never let them be in a, in the water with their devices on and think they're not going to go under like.
Valli: [00:32:51] Right. Yeah. It's been a lot of.
Valli: [00:32:53] Years in the making and all their cousins know and everything. So like you're not going to jump in and Cannonball and.
Carrie: [00:33:00] Yeah yeah yeah.
Carrie: [00:33:02] And then you have a mini heart attack in the process. Right. Thinking about that. Oh so you did know earlier that the days are long, but the years are short. And since writing and publishing this book, Battle and Harper are a little bit older and entering almost into, like the young adulthood of you, late teens and 20s. Before long, if you could add another chapter to Through the Fog, what would that title be and would do you have any thing that you jumps out to share?
Valli: [00:33:40] Oh, dear.
Valli: [00:33:42] That chapter still being written because now we're in the Battles going into senior year, and he's been been pretty heavily recruited for football. So we're going through this whole process pretty I mean, it's early in. He still has a senior year ahead of him. But it's the preparing to launch. And I know this is going to be filled with lots of stuff.
Carrie: [00:34:09] Yeah.
Carrie: [00:34:10] So that's the title preparing to launch.
Valli: [00:34:12] Right to launch.
Carrie: [00:34:14] Love it.
Valli: [00:34:15] I'm tethering. Just trying to mentally prepare. Um, baby steps I can't imagine. I mean, I still can't imagine.
Carrie: [00:34:26] Yeah, it goes like you said. It goes really fast. I have a daughter who will be a senior this year too. So that lots of decision to be made in the next year.
Valli: [00:34:38] Yeah. It's again, how did we get here? I'm so proud of the kids though. I mean, I'm it is really this stage in life is so fun to see who like they really are. You know, you see who they're becoming. And I love hanging out with them. You know, it's traveling is fun. Like, just hanging out is fun. They're really interesting, cool people. I like the people they are so.
Carrie: [00:35:08] Yeah.
Valli: [00:35:09] Worth the wait.
Carrie: [00:35:10] It's worth the wait. In the moment it's hard. But reflectively you get through and you're always going to be their mom. So you're always going to have some kind of fog that you're going to be looking through.
Valli: [00:35:25] Exactly.
Valli: [00:35:26] That's what my mom says. She's like, you think kids are stressful? Wait till you have grandkids. You know, you worry about them even more. I'm like, oh dear goodness. But that's what for anyone who's in the fog, you know, and you in the young, you know, the younger years.
Valli: [00:35:45] Um, it's.
Valli: [00:35:46] Just like, stay the course. It's gonna pay off everything you invest in your kids. It does. It pays off.
Carrie: [00:35:53] And then you enjoy it differently later. Later on.
Valli: [00:35:58] Yes.
Valli: [00:35:59] That's the goal.
Carrie: [00:36:00] Yeah.
Carrie: [00:36:00] So wrapping up today Valli with today's episode. Do you have any final thoughts that you want to share?
Valli: [00:36:09] Besides, I hope we get to see each other in person.
Valli: [00:36:12] No.
Valli: [00:36:14] I don't know. I hope that people will support the book. It's, you know, it's a labor of love. I don't have a marketing team. It's just me. It's available on Amazon. I love hearing people's feedback. Um, the reviews are very helpful. And then just following along on social media so we can connect. I really read every comment. I respond to as many as I can. My message is like, I love connecting with people and hearing their stories. So, um. I would love to hear from people.
Carrie: [00:36:51] Well, I just want to say thank you again for being a guest on the empowEAR Audiology podcast. And like I said earlier, I will link up the previous episode if people want to go back to that. And as you said, people can get onto your web page, My Battle Call and I can link that up too. And they can find your book on Amazon and order it and have it delivered right to their house, too.
Valli: [00:37:19] Oh, I know.
Valli: [00:37:19] What I was going to say is for organizations, audiologists, class classes, groups, I can also do bulk author copies for a better rate and ship them right to those. I've done it for quite a few. Our audiologist has a stack of them on hand that she gives out to new parents, and so somebody if anyone's interested in that, I'd love to offer that for people. They can contact me through my website. I think my email address is on there or through any of my social media. They can message me, just say they heard about the book. Book bundles.
Carrie: [00:37:57] All right. Well, that's a great way to get the book out there, and probably a great tool for parents to have and read. So again, thank you, Valli, for being a guest. And, um, I can't wait to meet you in person sometime soon.
Valli: [00:38:14] Thanks, Carrie. Take care.
Announcer: [00:38:16] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 60: empowEAR Audiology - Drs. Ashton and Riley
Announcer: [00:00:00] Welcome to episode 60 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Welcome everyone. It is Educational Audiology Awareness Week and this is going to be from October 16th through the 20th and it's 2023. And it is an honor to be able to coordinate with the Educational Audiology Association leadership to spread awareness. The goal of the Educational Audiology Awareness Week is to foster public awareness and knowledge of educational audiology services, including the benefits that these essential services provide children, their caregivers and other professionals. And the mission is to educate our stakeholders by enhancing interprofessional perception of educational audiology and strengthening community knowledge through promotion, outreach and advocacy efforts. And today on the EmpowEAR Audiology Podcast, I have leadership from the Educational Audiology Association. Joining me today, I have Dr. Tori Ashton, who is the president elect of EAA, and Dr. Kathi Riley, who is the vice president of Advocacy. And I'm just going to share a little bit about both of them, and I'm going to welcome them onto the podcast.
Carrie: [00:01:57] So we have Tori, who will be starting her ninth year as an educational audiologist with a cooperative educational service agency number 4 in Wisconsin. She provides services to 12 school districts within a 60 mile radius. Tori started as one of the Wisconsin state reps for EAA and then became the VP of Membership and Public Relations for three years, and she is currently the president elect for EAA. And I also have Kathi with me, who was an educational audiologist for 34 years in Delaware, where she provided services to students at the Delaware School for the Deaf and provided outreach and consult services across this tiny state through Delaware statewide program for the deaf, hard of hearing, and deaf blind. She now teaches educational audiology and oil rehab at the university level. Kathi has been an EAA state rep for Delaware for many years and she joined the advocacy committee a number of years ago and accepted the role as VP for Advocacy two years ago. So Kathi and Tori, welcome to the podcast and I'm so excited to collaborate for Audiology Educational Audiology Awareness Week.
Tori: [00:03:19] Hello.
Kathi: [00:03:21] Thank you.
Carrie: [00:03:22] Thanks for being here. What an exciting week as we kick off this week and just to kind of get the conversation started, I thought I would ask Tori or I mean, Kathi, how did the idea of Educational Audiology Awareness Week come about?
Kathi: [00:03:42] Well, it actually happened very organically. We had a member who on our community page, our listserv posted a request for ideas and templates for creating a PowerPoint. She was asked to do a professional development activity for her school district and she was looking for some ideas. That then led to several responses and one member kind of sparked this idea that we could create a national EAA day or a week to promote our profession. So the idea was approved by the board, and then a subcommittee was set up for this project and it was placed under the advocacy umbrella.
Carrie: [00:04:29] All right. And that's how you've been really involved in this. And Tori for listeners who might not know what the Educational Audiology Association is, can you share a little bit about this great group?
Tori: [00:04:43] Yeah. So we are an international organization that consists of audiology or audiologists as well as related hearing professionals. So that could be speech language pathologists, our teachers of the deaf and hard of hearing. We provide a full spectrum of hearing services to children, primarily those in educational settings.
Carrie: [00:05:05] Okay. And so when we have an educational audiology week and we're really focusing on that, how is that different than maybe a pediatric audiologist or a clinical audiologist? I feel like there's so many different roles that audiologists can play, but what is kind of that difference with education?
Tori: [00:05:26] Sure. So the difference mainly is or I feel is the location that we work in. So for educational, obviously we're primarily in the schools. Um. You know, we do a lot of similar things to clinical or pediatric, but there's also things that we do that aren't done at the clinic. So we might assess how a student is hearing in a classroom, um, provide accommodations and modifications for them so that they're successful in those classroom settings. Um, we also help schools with hearing screenings and promoting good listening environments with classrooms. Um, and then just making sure our students have the full access to their education. Where clinical is more in the clinic testing, hearing, fitting the hearing aids. There is um, collaboration between the two, but also a lot of cross of what we do. Kathi, i f you have anything you want to add to that?
Kathi: [00:06:29] Sure. You know, I think one of the issues is that programs, most of them do not have strong educator national background provided in terms of educational audiology. So the learning curve is very steep from being a clinical audiologist to being an educational audiologist. Educational audiology requires you not only to know all of your audiology, but also to understand the entire education system and how it works. We all know both regular and special ed law. We focus on classroom acoustics and how the environment impacts access to instruction. We coach teachers on effective teaching strategies. We manage and fit their hearing assistive technologies across the school day, which might look different in different environments. We take data on the effectiveness of those and we make recommendations for changes to their IEP or 504. We sit in on those meetings and we are an advocate for the student.
Carrie: [00:07:41] And does a student legally need to have an educational audiologist on their team, or is this just something that might be nice to add?
Tori: [00:07:56] I mean, legally it is in IDEA that they have access to educational audiologists. Um, each state does have different criteria that to for a child to receive an IEP or to qualify for a 504, you do have to go through the steps and show the evidence that they do need those added supports. Um, but legally, yes, they can all have access to it if they qualify for it.
Kathi: [00:08:24] Right. Right. That makes.
Carrie: [00:08:26] Sense. Go ahead, Kathi.
Kathi: [00:08:27] We are also working on strengthening the regulations around children who have 504s and their access to educational audiology. Educational audiology is by far the least utilized service that appears in IDEA. And there's a misconception that it is only a medically based service rather than an educational service. So we are working hard as an organization to change that perception and part of our EAA awareness week is to get the word out about who we are and what we do.
Carrie: [00:09:05] But that makes a lot of sense. In addition to the advocacy that we do as educational audiologist for students who are deaf and hard of hearing, who have maybe auditory processing, different auditory needs within the classroom, educational audiologist are also concerned about ALL kids who are learning in the classroom. And I know through the advocacy work that EAA has done, you have been working on a couple of different projects that really promote access for any child that is being educated. Do you want to share a little bit about some of those other projects that EAA is working on?
Kathi: [00:09:53] Sure, um, part of our role in the advocacy committee is to create resource documents that provide best practice or best guidance, best practice guidance for educational audiologists in a wide variety of situations and responsibilities that we encounter. And we hope that those members then can use those documents to advocate for specific practices and share that with administrators, teachers, school professionals. So one of the things we've been working a lot on lately is hearing screening importance, and ASHA is actually rewriting their guidelines for the practice portal. So we've been involved in that. And oversight of the hearing screening program is one of the responsibilities that is written into IDEA for audiology. So we've been working a lot on that arena, especially on a document that explains the legal rights of hearing screening for children with significant disabilities who are often overlooked or marked as could not test. We also have another subcommittee that's working on classroom acoustics. So we have a committee that has not only audiologists but researchers and an architect and an acoustical engineer. And we are working hard to update classroom acoustic regulations across the US. So part of that work we created a one page document that explains the components of acoustics and how it decreases auditory access for deaf and hard of hearing children, as well as other children with special learning needs, such as kids with auditory processing disorders, children who are English language learners, children who have attention issues, and a whole host of other kids. So we're really proud of that and we hope that educational audiologists will share that with their school teams.
Carrie: [00:12:00] That mean educational audiologists really wear quite a few hats when you think about it in the school and educational setting from the advocacy piece to actually working directly with students and teachers and teams and parents and everyone that is involved. So it's exciting to be in the schools and be an educational audiologist and this week is so amazing because we get to really promote everything that we are doing. And one of the things that I thought we could talk about next would be what are some of these activities that we have planned for Educational Audiology Week? Does somebody want to just share some of the excitement that's going to be happening this week?
Tori: [00:12:52] Yeah, I can touch on. So for like social media, we are encouraging, you know, all educational audiologists to share on their social media throughout the week. Um, you know, whether it's sharing those advocacy documents that we have, um, different graphics that might be posted up by EAA if they reshare them and just kind of getting the word out that way. Along with that, We do have two primary hashtags that people can use when they're making their posts. We have hashtags for #EdAuDweek and then at #EdAuDadvocacy.
Kathi: [00:13:31] Right? The other things that we're working on is a Zoom background that educational audiologist will be able to download. And we actually have come up with three of them. One is for Educational Audiology Week, and then the other two are simply Educational Audiology Association and those are going to be approved by the board hopefully next week and then they'll be posted on our. You'll be able to, to find them by using the QR code that we have created. So the educational audiology QR code right now that page is blank, but we are working on getting everything uploaded into that. Unfortunately, Facebook has really restricted who can have a ribbon. So you know that frame for Facebook, you have to be an approved and recognized organization. So that won't be able to happen this year, but we hope to have it in the upcoming years because we do expect this to be an annual event in the third week of October.
Carrie: [00:14:48] Okay. So that was another question. Is this going to be an annual event? And Kathi, you just said that it will be. So that is that is exciting, too. For the activities. Do you guys have different topics that you're going to kind of be sharing out on social media every day that really highlight educational audiologist or educational audiology week or that a surprise for all of us to see this week?
Kathi: [00:15:17] We actually are targeting different groups every day. So our infographics will be hopefully valuable to a variety of stakeholders. So school administrators, parents, clinical audiologists. I actually forget what the other two are. But we have a different we have a different focus for every single day. And we have different team members from this subcommittee who are putting together the resources for that.
Carrie: [00:15:50] Well, what a great way to share out and for educational audiologists to have access to important resources to share with their school teams and families and whoever they might might might need to raise that awareness about for educational audiology during that week. Is there anything else that you guys can think of that you want to share as we kick off Educational Audiology Awareness Week?
Tori: [00:16:18] I think we're all just very excited about it. This is something new and a great way for us to obviously bring what educational audiology is more out there to everyone, you know, whether it's our schools, our families, just explaining what we do and then how we can support schools and our students.
Carrie: [00:16:41] And how would people make sure that they're getting that information if they maybe if they're not a member of EAA, how can they find membership information and how can they make sure they stay in the loo this week as we kick off Educational Audiology Awareness Week?
Tori: [00:17:01] And they can always go to our website which edaud.org. And there's all kinds of information not only about this week and what will be taking place and different links to our um, you know, like our zoom backgrounds like Kathi mentioned and those different. Outreach advocacy documents, but also about our membership and who we are and just more information about us as an organization.
Kathi: [00:17:31] And don't forget social media. So we have a team that works on social media. And so there will be posts on all of our social media sites. So that's a great way to take a quick look at what's there and download it and share it with colleagues.
Carrie: [00:17:51] Yeah, share it, put the hashtag out there for everyone and it would be a great way to promote. So Tori and Kathi, thank you for joining today for the kickoff of the Educational Audiology Awareness Week. And we're just hoping that all of our members and hopefully new members really join us and promoting everything that we have to offer as educational audiologist in the schools. So thank you.
Tori: [00:18:20] Thank you.
Kathi: [00:18:21] Thank you.
Announcer: [00:18:22] Thank you for listening. This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 60 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Welcome everyone. It is Educational Audiology Awareness Week and this is going to be from October 16th through the 20th and it's 2023. And it is an honor to be able to coordinate with the Educational Audiology Association leadership to spread awareness. The goal of the Educational Audiology Awareness Week is to foster public awareness and knowledge of educational audiology services, including the benefits that these essential services provide children, their caregivers and other professionals. And the mission is to educate our stakeholders by enhancing interprofessional perception of educational audiology and strengthening community knowledge through promotion, outreach and advocacy efforts. And today on the EmpowEAR Audiology Podcast, I have leadership from the Educational Audiology Association. Joining me today, I have Dr. Tori Ashton, who is the president elect of EAA, and Dr. Kathi Riley, who is the vice president of Advocacy. And I'm just going to share a little bit about both of them, and I'm going to welcome them onto the podcast.
Carrie: [00:01:57] So we have Tori, who will be starting her ninth year as an educational audiologist with a cooperative educational service agency number 4 in Wisconsin. She provides services to 12 school districts within a 60 mile radius. Tori started as one of the Wisconsin state reps for EAA and then became the VP of Membership and Public Relations for three years, and she is currently the president elect for EAA. And I also have Kathi with me, who was an educational audiologist for 34 years in Delaware, where she provided services to students at the Delaware School for the Deaf and provided outreach and consult services across this tiny state through Delaware statewide program for the deaf, hard of hearing, and deaf blind. She now teaches educational audiology and oil rehab at the university level. Kathi has been an EAA state rep for Delaware for many years and she joined the advocacy committee a number of years ago and accepted the role as VP for Advocacy two years ago. So Kathi and Tori, welcome to the podcast and I'm so excited to collaborate for Audiology Educational Audiology Awareness Week.
Tori: [00:03:19] Hello.
Kathi: [00:03:21] Thank you.
Carrie: [00:03:22] Thanks for being here. What an exciting week as we kick off this week and just to kind of get the conversation started, I thought I would ask Tori or I mean, Kathi, how did the idea of Educational Audiology Awareness Week come about?
Kathi: [00:03:42] Well, it actually happened very organically. We had a member who on our community page, our listserv posted a request for ideas and templates for creating a PowerPoint. She was asked to do a professional development activity for her school district and she was looking for some ideas. That then led to several responses and one member kind of sparked this idea that we could create a national EAA day or a week to promote our profession. So the idea was approved by the board, and then a subcommittee was set up for this project and it was placed under the advocacy umbrella.
Carrie: [00:04:29] All right. And that's how you've been really involved in this. And Tori for listeners who might not know what the Educational Audiology Association is, can you share a little bit about this great group?
Tori: [00:04:43] Yeah. So we are an international organization that consists of audiology or audiologists as well as related hearing professionals. So that could be speech language pathologists, our teachers of the deaf and hard of hearing. We provide a full spectrum of hearing services to children, primarily those in educational settings.
Carrie: [00:05:05] Okay. And so when we have an educational audiology week and we're really focusing on that, how is that different than maybe a pediatric audiologist or a clinical audiologist? I feel like there's so many different roles that audiologists can play, but what is kind of that difference with education?
Tori: [00:05:26] Sure. So the difference mainly is or I feel is the location that we work in. So for educational, obviously we're primarily in the schools. Um. You know, we do a lot of similar things to clinical or pediatric, but there's also things that we do that aren't done at the clinic. So we might assess how a student is hearing in a classroom, um, provide accommodations and modifications for them so that they're successful in those classroom settings. Um, we also help schools with hearing screenings and promoting good listening environments with classrooms. Um, and then just making sure our students have the full access to their education. Where clinical is more in the clinic testing, hearing, fitting the hearing aids. There is um, collaboration between the two, but also a lot of cross of what we do. Kathi, i f you have anything you want to add to that?
Kathi: [00:06:29] Sure. You know, I think one of the issues is that programs, most of them do not have strong educator national background provided in terms of educational audiology. So the learning curve is very steep from being a clinical audiologist to being an educational audiologist. Educational audiology requires you not only to know all of your audiology, but also to understand the entire education system and how it works. We all know both regular and special ed law. We focus on classroom acoustics and how the environment impacts access to instruction. We coach teachers on effective teaching strategies. We manage and fit their hearing assistive technologies across the school day, which might look different in different environments. We take data on the effectiveness of those and we make recommendations for changes to their IEP or 504. We sit in on those meetings and we are an advocate for the student.
Carrie: [00:07:41] And does a student legally need to have an educational audiologist on their team, or is this just something that might be nice to add?
Tori: [00:07:56] I mean, legally it is in IDEA that they have access to educational audiologists. Um, each state does have different criteria that to for a child to receive an IEP or to qualify for a 504, you do have to go through the steps and show the evidence that they do need those added supports. Um, but legally, yes, they can all have access to it if they qualify for it.
Kathi: [00:08:24] Right. Right. That makes.
Carrie: [00:08:26] Sense. Go ahead, Kathi.
Kathi: [00:08:27] We are also working on strengthening the regulations around children who have 504s and their access to educational audiology. Educational audiology is by far the least utilized service that appears in IDEA. And there's a misconception that it is only a medically based service rather than an educational service. So we are working hard as an organization to change that perception and part of our EAA awareness week is to get the word out about who we are and what we do.
Carrie: [00:09:05] But that makes a lot of sense. In addition to the advocacy that we do as educational audiologist for students who are deaf and hard of hearing, who have maybe auditory processing, different auditory needs within the classroom, educational audiologist are also concerned about ALL kids who are learning in the classroom. And I know through the advocacy work that EAA has done, you have been working on a couple of different projects that really promote access for any child that is being educated. Do you want to share a little bit about some of those other projects that EAA is working on?
Kathi: [00:09:53] Sure, um, part of our role in the advocacy committee is to create resource documents that provide best practice or best guidance, best practice guidance for educational audiologists in a wide variety of situations and responsibilities that we encounter. And we hope that those members then can use those documents to advocate for specific practices and share that with administrators, teachers, school professionals. So one of the things we've been working a lot on lately is hearing screening importance, and ASHA is actually rewriting their guidelines for the practice portal. So we've been involved in that. And oversight of the hearing screening program is one of the responsibilities that is written into IDEA for audiology. So we've been working a lot on that arena, especially on a document that explains the legal rights of hearing screening for children with significant disabilities who are often overlooked or marked as could not test. We also have another subcommittee that's working on classroom acoustics. So we have a committee that has not only audiologists but researchers and an architect and an acoustical engineer. And we are working hard to update classroom acoustic regulations across the US. So part of that work we created a one page document that explains the components of acoustics and how it decreases auditory access for deaf and hard of hearing children, as well as other children with special learning needs, such as kids with auditory processing disorders, children who are English language learners, children who have attention issues, and a whole host of other kids. So we're really proud of that and we hope that educational audiologists will share that with their school teams.
Carrie: [00:12:00] That mean educational audiologists really wear quite a few hats when you think about it in the school and educational setting from the advocacy piece to actually working directly with students and teachers and teams and parents and everyone that is involved. So it's exciting to be in the schools and be an educational audiologist and this week is so amazing because we get to really promote everything that we are doing. And one of the things that I thought we could talk about next would be what are some of these activities that we have planned for Educational Audiology Week? Does somebody want to just share some of the excitement that's going to be happening this week?
Tori: [00:12:52] Yeah, I can touch on. So for like social media, we are encouraging, you know, all educational audiologists to share on their social media throughout the week. Um, you know, whether it's sharing those advocacy documents that we have, um, different graphics that might be posted up by EAA if they reshare them and just kind of getting the word out that way. Along with that, We do have two primary hashtags that people can use when they're making their posts. We have hashtags for #EdAuDweek and then at #EdAuDadvocacy.
Kathi: [00:13:31] Right? The other things that we're working on is a Zoom background that educational audiologist will be able to download. And we actually have come up with three of them. One is for Educational Audiology Week, and then the other two are simply Educational Audiology Association and those are going to be approved by the board hopefully next week and then they'll be posted on our. You'll be able to, to find them by using the QR code that we have created. So the educational audiology QR code right now that page is blank, but we are working on getting everything uploaded into that. Unfortunately, Facebook has really restricted who can have a ribbon. So you know that frame for Facebook, you have to be an approved and recognized organization. So that won't be able to happen this year, but we hope to have it in the upcoming years because we do expect this to be an annual event in the third week of October.
Carrie: [00:14:48] Okay. So that was another question. Is this going to be an annual event? And Kathi, you just said that it will be. So that is that is exciting, too. For the activities. Do you guys have different topics that you're going to kind of be sharing out on social media every day that really highlight educational audiologist or educational audiology week or that a surprise for all of us to see this week?
Kathi: [00:15:17] We actually are targeting different groups every day. So our infographics will be hopefully valuable to a variety of stakeholders. So school administrators, parents, clinical audiologists. I actually forget what the other two are. But we have a different we have a different focus for every single day. And we have different team members from this subcommittee who are putting together the resources for that.
Carrie: [00:15:50] Well, what a great way to share out and for educational audiologists to have access to important resources to share with their school teams and families and whoever they might might might need to raise that awareness about for educational audiology during that week. Is there anything else that you guys can think of that you want to share as we kick off Educational Audiology Awareness Week?
Tori: [00:16:18] I think we're all just very excited about it. This is something new and a great way for us to obviously bring what educational audiology is more out there to everyone, you know, whether it's our schools, our families, just explaining what we do and then how we can support schools and our students.
Carrie: [00:16:41] And how would people make sure that they're getting that information if they maybe if they're not a member of EAA, how can they find membership information and how can they make sure they stay in the loo this week as we kick off Educational Audiology Awareness Week?
Tori: [00:17:01] And they can always go to our website which edaud.org. And there's all kinds of information not only about this week and what will be taking place and different links to our um, you know, like our zoom backgrounds like Kathi mentioned and those different. Outreach advocacy documents, but also about our membership and who we are and just more information about us as an organization.
Kathi: [00:17:31] And don't forget social media. So we have a team that works on social media. And so there will be posts on all of our social media sites. So that's a great way to take a quick look at what's there and download it and share it with colleagues.
Carrie: [00:17:51] Yeah, share it, put the hashtag out there for everyone and it would be a great way to promote. So Tori and Kathi, thank you for joining today for the kickoff of the Educational Audiology Awareness Week. And we're just hoping that all of our members and hopefully new members really join us and promoting everything that we have to offer as educational audiologist in the schools. So thank you.
Tori: [00:18:20] Thank you.
Kathi: [00:18:21] Thank you.
Announcer: [00:18:22] Thank you for listening. This has been a production of the 3C Digital Media Network.
Episode 59: empowEAR Audiology - Dr. Erika Gagnon and Erin Thompson
Announcer: [00:00:00] Welcome to episode 59 of emmpowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have two guests from North Carolina with me, and I am going to take a second and read a little bit about their bios. They are an SLP and audiology duo. I have Erin Thompson, who has been working with the Children's Cochlear Implant Center at University of North Carolina since July of 2004. She earned her bachelor's from Appalachian State University and her master's in speech and hearing science from UNC Chapel Hill. She became a listening and spoken language specialist in 2009. Erin conducts listening and spoken language parent participation sessions, speech and language diagnostics for children who are deaf and hard of hearing. A passion has been mentoring students and professionals across North Carolina, the US and abroad. Erin has been a member of the Global Foundation for Children with hearing Loss and has traveled to Vietnam on three occasions and also Mongolia on one occasion to help provide mentoring and training abroad. She has spent time coaching a team of speech language pathologists in Auckland, New Zealand. Erin expanded her interest in 2019 to include the role of Family Care coordinator for the Children's Cochlear Implant Center at UNC. She helps manage, facilitate and coordinate cochlear implant consultation referrals supporting all families through the CI consult process at UNC. I also have Dr. Erika Gannon. She is earned her bachelor's and doctorates in theology from the University of North Carolina at Chapel Hill. She is a pediatric cochlear implant audiologist at the Children's Cochlear Implant Center at UNC. In addition, she is the Audiology Clinic manager and program director of the CDP Grant. Erika's research interests include pediatric cochlear implant, device use and pediatric electric acoustic stimulation. Erika enjoys teaching and mentoring students. She co-teaches the cochlear implant course to UNC's audiology graduate students. So Erin and Erika, welcome to the EmpowEAR Audiology podcast. I'm so excited to have both of you.
Erin: [00:03:03] Thank you so much for having us. This is really great.
Carrie: [00:03:07] Yeah. So I know before the podcast started, we spoke a little bit and I had heard Erin talk at, I believe, the AmErikan Cochlear Implant Alliance Conference as well as the EDHI conference. And then as I reached out to Erin, she also looped in Dr. Gannon and Erika. And we to talk about two important topics today. And I am really excited for our listeners to hear all about their work with full time use of hearing technology and its impact on language development, as well as the importance of co-treatment and strength based coaching to impact device where time and probably many other things with strength based coaching. So I am glad both of you are here and because this is kind of a audiology, professional and related services podcast, I always like to find out from my guests, how did you actually venture into the field of audiology and speech language pathology? So I don't know. Erin Do you want to start with your venturing into speech language pathology?
Erin: [00:04:23] Sure. This is kind of funny because I think it's kind of a throw out to like all the moms out there who encourage their kids or think, Hey, you'd probably be really great at X, Y or Z. And my mom in high school was like, Really I think you'd be great as a speech pathologist? And I took one of those, or she had said that and I had taken one of those personality typing, What should you be when you grow up kind of thing? And speech pathology and audiology were in the top three and I was like, Oh, absolutely not. My mom wants me to do this. No way am I doing this. So I went in. I went to Appalachian, undeclared and undecided. And my roommate at App my freshman year was in the speech pathology program. And so I got to see what she was doing and I was like, you know what? Maybe I do want to take some intro classes. And so I did and loved it and then had the challenge when I graduated from APP. On whether I wanted to go into speech or audiology. I was really torn and then found my my perfect match at UNC as a speech pathologist working with kids with hearing loss. So kind of a perfect fit. So that's a.
Carrie: [00:05:43] Great story about my mom's, right? Yeah. I was just going to say, your mom's always right. Right? Yeah. Um, Erika, how did you venture into audiology?
Erika: [00:05:55] I knew I always wanted to be in health care. I originally thought I wanted to be a nurse and figured out quickly that I don't do needles or blood. And so as I was trying to explore other options that still left me in health care, I had a friend who was in the audiology program and recommended I observe a little bit and I was volunteering at the hospital and got to observe someone like two weeks out from their cochlear implant activation. And I was I was hooked ever since.
Carrie: [00:06:26] Another great story, too. So both of you are at UNC. Do you want to do you want to share a little bit about the Children's Cochlear Implant Center? There you have a lot of great people that are part of your network. So one of you wants to take that lead.
Erika: [00:06:46] Sure. So the Children's Cochlear Implant Center at UNC. We've been seeing children with hearing loss in North Carolina for over 30 years and have performed over 2000 pediatric cochlear implants. We are a part of a multidisciplinary team and we have both pediatric cochlear implant audiologists, speech language pathologists that specialize in listening and spoken language. We also have a pediatric research group in the office as well, and we are a teaching clinic for both audiology and speech language pathology grad students, and we work with a greater interdisciplinary team at UNC, with our pediatric pediatric diagnostic team and our ear, nose and throat physicians.
Carrie: [00:07:30] Yeah, lots of opportunities to see lots of kids and be involved in a lot of research, which kind of is a great segway into the things that both of you are interested in, and that is that language development and how that impacts kids who are deaf and hard of hearing. And I think when you think about the world of pediatric deafness, a lot of the studies talk about the importance of early identification. We have newborn hearing screening, all of those important things. We talk a lot about technology and early interventions as part of language development, but one of the things that is typically not talked about that your group has spent a lot of time on, is that focus on on wear time can you one of you start sharing a little bit about your research and clinical experience in this in this area and why this is really important to consider?
Erika: [00:08:26] Sure. So wear time or getting the objective data from the speech processor regarding device usage for cochlear implants is a lot more recent than it is for hearing aids. We've only had access to this since maybe around 2014 or 2015. And so as this as a clinician, as this information became available, we felt like this was really a game changer because we're like, is this explaining why somebody isn't doing as well as we would want or not making the progress that we'd expected? And so we just we had all of this new information about patients we were seeing, you know, different where time and trends for babies versus teenagers. And it felt like we really had this key piece to something important. And so we really wanted to dive harder into that. And so we've looked at some some wear time information for this youngest group of babies, like birth to three. We have several articles on that. And also have looked a little bit about where time and the single sided deafness population.
Carrie: [00:09:32] So when, as you said, you know, for cochlear implants, this is been about 2014, 2015 that we've been able to have this data logging and hearing aids was a little before that. But again, a lot of great information. Do you as practitioners, whether from speech pathology, audiology? Do you ever ask parents like, Hey, how often is your child wearing the cochlear implant? And then do you ever see kind of a mismatch between what you're pulling up on the computer and what a parent might be reporting?
Erika: [00:10:09] Yes. We always try and ask the question, How's it going? How? How is wear time device use, especially, you know, use of like retention Aids. And unfortunately there is a trend that. Over or over reporting device usage. Parents often say they're wearing it more than the objective data shows. This is a trend in more than just cochlear implants. It's also present in hearing aid literature as well. And I think it's likely just little ones are so dynamic with eating and napping and multiple care providers. I think it's I think it's easy to overestimate the usage.
Carrie: [00:10:47] And that's kind of another way that you started thinking about looking at this was looking at this concept of hearing hours percentage. Can you share or explain what this is and why this might be a better way of looking at things rather than like kind of full time usage?
Erika: [00:11:10] Sure. So full time usage in the literature, it wasn't consistent. We were seeing, you know, 8 hours or 10 hours or clinicians were using phrases like eyes open ears on, which is a wonderful phrase and a and a great goal for parents. But sometimes, you know, that vague term isn't concrete. And then 8 or 10 hours, we were just seeing that, you know.
Erika: [00:11:34] It.
Erika: [00:11:35] Sleep wake time is so different for babies versus teenagers that.
Erika: [00:11:41] You know what is.
Erika: [00:11:41] Actually the best way to talk about wear time. So we noticed trends are like teenagers are wearing their equipment, more toddlers are wearing their equipment a little less. And we started to incorporate the sleep wake into how we define full time use or this hearing hours percentage. This was first published and Lisa Parks age at full time use predicts language outcomes better than age of surgery. In children who use cochlear implants and essentially the takes where time as a percentage of wake time based on the age of the child. So an example is a 15 year old is awake 15.5 hours a day on average. A 12 month old is awake 11 hours a day. If you take eight hours, if we were using, you know, full time use at eight hours for the 12 month old, that's 73% of their waking hours. But for a 15 year old, it's only 52% of their waking hours. So HHP better reflected the age of the patient.
Carrie: [00:12:43] Wow. Just out simple example right there with the difference of the age and the average sleep time really is telling of the you know, what we want to achieve. Is there a. I guess, percentage that as audiologists and speech language pathologist you would like to see for the hearing hours percentage.
Erika: [00:13:09] We would always love it to be 100%, but we are practical. Our research has found 80 to 100% is really the goal.
Carrie: [00:13:19] Okay, that makes sense. So it kind of factors in maybe bath time, shower times, those waking up and just kind of getting started with your day and then kind of going to bed having a couple of hours right there.
Erin: [00:13:33] Yeah. And that's where we really saw the research to show that kids had typical language scores when they hit that 80%. And that's where we were really seeing kind of the magic number kind of all align. 80% equaled some of those those stellar language scores.
Carrie: [00:13:52] Okay. And yeah, I would love to dig a little bit deeper into that as well. One of the other questions I know, Erika, you had mentioned that you there was some different research, too, with single sided deafness. And, you know, we're seeing younger kids get cochlear implants who have maybe typical hearing in one ear and a profound hearing loss in the other ear. Does the hearing hours percentage matter for those kids, too?
Erika: [00:14:25] Yes.
Erika: [00:14:26] So. The information we have for the single sided deafness. Population isn't for language scores on the whole, but we have that linked with single word scores for CNc, and so the higher the hearing hours percentage, the better the CNC outcome. There's also a positive correlation with HP and spatial release of masking scores. So a true measure of binaural hearing. So we are seeing that HP is a factor for those things in that single sided deafness population.
Carrie: [00:15:00] Okay. Do you see that? This is just a sidebar question to more acceptance of the cochlear implant if they increase their wear time to. What have you not looked into that.
Erika: [00:15:14] For.
Erika: [00:15:15] Patients or in.
Erika: [00:15:16] General, just.
Carrie: [00:15:18] Patient? Because I know sometimes they may not always kind of acclimate to the cochlear implant, but do you find that with the increased hearing hours percentage, they may acclimate or be better users of the cochlear implant?
Erika: [00:15:34] What we saw was.
Erika: [00:15:35] That as kids got into their teenage years wear time dropped. And we think that's just a matter of calling attention to something and kind of those really vulnerable teenage years, but started to see an uptick as patients got a little bit older. So I'm hoping once they get past some of those teenage years, we can expand our data and and look a little bit more into that. But honestly, a lot of it was related to age.
Carrie: [00:16:01] Okay. That makes sense too. So I know that article that both of you authored with some of your colleagues titled Age at Full Time Use predicts language outcomes better than age of surgery and children who use cochlear implants. And you kind of touched on this a little bit, but you found that for both receptive and expressive language, age of full time use was found to be a better predictor of outcomes than than the age at the surgery. So in your literature, you also found that it took an average of 17 months for children to establish that use, and only 52% reached that milestone by the age of three. So as you guys are thinking about where you're at in a big cochlear implant center and co treating and certain occasions and thinking about that whole child and the family and everybody else that's involved. Educators, early interventionist. What are some of those factors that might contribute to that statistic? Because I feel like. That is kind of a lower statistic overall.
Erin: [00:17:13] Yeah. So a couple of things there. I'm going to take over for a second and kind of jump in. Um, one of the things is that I want to touch on because I always stress this in our presentations as well whenever we're talking about this. We were finding that full time use is a better predictor of language outcomes at age three than age of surgery. We are just clear, always clarify. We are not questioning or saying that they shouldn't have surgery later, that we still absolutely you know, are proponents and promoting earlier is better. We aren't questioning that. We aren't looking we're not changing that at all. But they do have to wear it after surgery. You can have surgery at any time at six months. Not that we're doing them at six months right now, but eight months, 12 months. But if they aren't wearing it, then it does impact outcomes. Um, but back to the, you know, it takes an average of 17 months to reach full time use and only 52% did that by age three. It's almost, you know, the question of what are the factors that contribute to this.
Erin: [00:18:20] It's almost in reverse of what doesn't impact this. Everything impacts it. Um, some of the first things that we that I think folks notice or think about are any additional diagnoses. Are there other things that are even more of the higher priority for a child's health and well-being is and taking care of of those other health factors. Um sensory needs we find impact where time we of course see differences with different socioeconomic factors, parents schedules, um, kids at home versus in daycare potentially pending what education or what the what the what the the families or the child care providers have been taught about the importance of where time not that they aren't educated, but what have they been taught about where time and how important that is. Um, distance from school, distance from clinics, those kinds of things. Then the access to that education about the importance of, of wear time and then sometimes just the differences in counseling techniques and coaching techniques and, and how have their school providers, clinic providers, private providers, audiologists, um, pediatricians, ENTs explained the importance so many things have have impacted and can impact this these statistics.
Carrie: [00:19:58] Yeah, which is, I think, a great way to kind of get into what your team at UNC has really looked at to try to maybe close some of those gaps and increase the number that reached that milestone by three years of age. And I think our conversation about hearing hours percentages is really an important factor in that too. But one thing that you have shared is that you have talked about the need for strength based coaching, and that's really helping with working with families. Can you share a little bit more about this model too, of co treating with audiology and speech and how this really impacts families as a as a whole?
Erin: [00:20:46] Absolutely. So the the quick, easy definition of co treating is audiologists and speech pathologists working together in an appointment and treating a child and family at the same time. Um, it's something that has kind of been brewing at UNC since 2011 when we actually got to hear Dimitry Dornan and the Hear and Say crew from Australia talk at the AG Bell Conference in Scottsdale, Arizona back in 2011. But then we weren't able to kind of put it into practice at UNC until a few years later. We had our director at the time had to work to find some grant money to help us be able to account for our time because you couldn't bill for coach reading. Um, and so we were able to, to put that in into play in 2015. But in depth it's speech pathologists and audiologists collaborating. We talk ahead of time before an appointment to see what are the needs of that child and family. What are some things that we want to work on together? Um, make a goal. Make a plan. We collect information during the appointments about auditory skills, we use our functional listening index to track audiological audiology skills, audition skills. Um, we are providing caregiver support and that's where our strengths based coaching comes in. And then we are also communicating afterwards. We're talking to local providers, sharing, updating school professionals, educational audiologists, early interventionists, private therapists. So we're all kind of working on the same page. Um. And then that kind of leads into that strength based coaching. Yes.
Carrie: [00:22:44] So share a little bit more about that and how your team's kind of been trained and how that impacts family connections.
Erin: [00:22:53] Um, yeah. So we have all and Erika has done this as well. Think all the audiologists have had some level of training exposure to the formal, um, program, which is through the Center for School Transformation. Um, and it is an Evocative Coaching, strengths based coaching program that we have all been through. Um, and it is looking at things and very asset based, strengths based taking what is important and a strength for a professional, a parent and building off of that. Um, in all very positive ways. Um, it is learner driven. It's what is important to the family and it's based on evocative coaching and positive psychology, adult learning theory, appreciative inquiry and nonviolent communication so that you should do versus how could you what would you want to do? What would that look like moving forward with your family?
Carrie: [00:24:02] So if I would put both of you on the spot here as kind of thinking about all of the topics we've talked about in particular, like maybe you have a family who comes in and says, hey, you know, I'm wearing my child's wearing this device all the time. And as your co treating together, you realize this really isn't what's happening. Would you be able to roleplay maybe a short conversation that you may be having to discover, um, maybe the hearing hours percentage or, um, you know, what are some factors that might be happening that is reducing that time? Could you use some of those strength based skills to kind of role play for listeners?
Erika: [00:24:53] Sure.
Erin: [00:24:56] All right. I'm going to be the clinician and Erika is going to be our parent or guardian in the clinic. And so I'll take that start of the scenario, Carrie, of, you know, looking at. Okay. All right, Erika, it's good to see you guys today. Pierce is now six months out from getting his implant. You know, you talked about coming in that you're feeling like things are going well and that you're looking at full time. You know, he's wearing it a lot and wearing it all the time. And, you know, we we looked at the data logging and and it looks like it is up from your last appointment. Last time it was around three hours a day of an average and now we're up to four hours. Um, and based on his awake time, um, of about 11 hours a day, that gives us a 36% HHP. And again, that's up from last time. Tell me something that has gone really well over since you were here last time.
Erika: [00:26:05] Yes.
Erika: [00:26:05] So since the last time we were in, we've started using a headband and I have found that that has been helpful. I find that the the easiest time is in the morning. It's a little hard to get it on when we're trying to get breakfast and everybody awake and out the door. But once once it's just he and I in the morning and we have some time to really have one on one interaction. I'm finding that we're we're more successful at that time, especially with the headband.
Erin: [00:26:34] I'm really glad to hear that the headband's been helping. I know that we talked about that last time and you were going to try it out. So I'm really I'm really glad to hear that that has been has been a benefit. Um, and that it sounds like some one on one time together in the morning has is is good as well. So what tell me about a time that's a little more challenging. What is a time of the day that's more challenging but also kind of something that feels important to you where there's a lot of language or just a special time with family? What where is a time like that during the day currently?
Erika: [00:27:12] Yeah, I.
Erika: [00:27:13] Think maybe the hardest, the hardest time of the day, but the time that we could all get the most benefit from is like the dinner prep and then dinner time. It's hard with older sister and then playing and maybe being kind of far away from me in the kitchen when I'm trying to cook and that their interaction together, it's just hard for me to keep it on them during that time. But there's lots of talking and as we're talking about dinner and you know, how is your day? I feel like that that would be a time that we could improve on. That would be important.
Erin: [00:27:45] Dinner, that dinner time after work, school time is so language rich. A lot of times that is at my house as well. So with my guess, he's probably already you're probably trying the headband after dinner right now would be my guess. Okay. Well, that's good. That's good. I'm wondering, what do you think it is about the morning time that's going so well that maybe we could add in and kind of brainstorm a way to add that into that dinner time.
Erika: [00:28:16] Yeah, he's he's playing with sister a lot, and they're in the living room and I'm in the kitchen, which are kind of connected, but, you know, a little bit farther away. I don't know. I'm wondering if while they're playing, if we could kind of try and bring them a little closer to me and have her maybe not put the devices on him, but just maybe help me monitor it more or just her interaction one on one interaction with him. Um.
Erin: [00:28:41] I like it. I like that idea. So that sounds like some one on one attention is what's been helpful and how do we create that around dinner time? And maybe, maybe Emmy, um, who knows, She might be able to put equipment on at three or so. She's four now, isn't she? How old is five? Oh, my gosh. Okay. She's five. Um.
Erika: [00:29:04] But she.
Erika: [00:29:05] Could probably.
Erika: [00:29:06] Play with him. And he loves books, so I'm sure she could sit with him and he loves to be read to. So if she could sit with him and maybe flip through some stories and books, I think he would really enjoy that time. And maybe that would help distract him.
Erin: [00:29:18] Yeah, maybe he wouldn't. Yeah. Leave him. Leave him be. I think that's a great idea. How do you feel about trying that out between now and our next? Um, next time you guys are here?
Erika: [00:29:31] I think that feels reasonable.
Erika: [00:29:32] We've got, like, a basket of books that we could kind of position in a spot that would kind of be close enough to me, but they could still have their their place to play and I definitely think that's something we could implement together.
Erin: [00:29:45] All right. Let's try it out. Let's see. Let's see if taking what we know has been helpful in one part of the one part of the day and see how that kind of can maybe carry over and and maybe Emmy won't be ten by the time you come back.
Carrie: [00:30:04] But that was fabulous role playing Erika and Erin. And and I love it. But I guess just listening and thinking about what you guys did and I want you to jump into I loved Erin, how at first you kind of laid the facts down, right? I mean, in a very good like, you know, easy to understand way. And then right after that you were able to ask or like what, you know, celebrate those small successes. So even though it wasn't where probably you would want to see it, it had increased since the last time. So, you know, celebrating those small, you know, successes all of the time is probably really a critical piece of that strength based coaching. Um, but I love how you always reflected too, on what the parent said. So you would just kind of, you know, letting Erika share and then you would just really rephrasing or reflecting and what she said. So you would. And then from there you would kind of jumped into like, can you tell me some of those challenges? You told me your successes. Tell me your challenges. And, you know, she brought up the dinner time and things like that, but then you went right into, you know, validating, you know, oh, this would be a great time to, you know, try out some more language and maybe help with that.
Carrie: [00:31:27] And then I love what you say, too, that you're like, I'm wondering. So you kind of get that wonder piece in. But for the parent and how you know, how I wonder if you, you know, can you know, and kind of help them wonder, too, in that situation. And then that really led into mom coming up with her own solution. Right? Like her own goal for what that next step was. And then Erin validating again and rephrasing, um, that was helpful, you know, for think, Erika, to kind of process that and then just asking, how do you, you know, how do you feel about this? Do you think this is something that you can do and, you know, kind of how are we going to check in next time? So does that mean feel like that was kind of what you guys were sharing?
Erin: [00:32:19] That was our hope. That was our hope. And that's always kind of our hope. And we know that families really are trying. We don't have a single family that's really literally not ever trying to keep devices on. So we know there's always something to celebrate. There's always a success in there. And pointing that out because we could focus on the hard part and the quote unquote negative, but that's not going to refresh them to keep trying harder. So finding out what is what went well for them, their success, what was great for them might not be what we would have picked out as being a success and what is motivating or an important time of day. I might have all kinds of ideas of what would be a great the most perfect language, rich time of day to focus on. But if that's not the important motivating part for the family of what is important in their home and important to them, then it might not be as motivating for them to go home and try. So we do try to to focus on what is important to the family and it is their goal for their child. This is not my goal. It's what they have they're choosing to pursue. And so I do reflect back on a lot of those things. And we do. We all do so.
Carrie: [00:33:39] And if it's their goal, I'm sure they're more likely to implement it and follow through with it. I mean, that's the hope of it as well. What happens when you have a family that you've been doing co treating with and they aren't moving as quickly as you want? Do you see that more often? Do you bring them in more often? Do you connect with them virtually more often? Like how does that work to kind of keep the, I guess, ball going in the right direction?
Erika: [00:34:11] Yes.
Erin: [00:34:14] I think and again, you know. Erika, please jump in. Um, think I think we do think it always is just very dependent family to family on why or what seems to be the hurdle or hurdles. And then if it's distance or scheduling, then we might not try to get them in more often. It might be more phone calls or touching base or connecting with their local early interventionist or school provider or something like that to or phone calls or emails or. Kind of trying to figure out what the hurdle is and then not creating more of a hurdle, but some sort of bridge. What do you think, Erika?
Erika: [00:35:00] For sure. And if there's.
Erika: [00:35:04] I don't want.
Erika: [00:35:05] To put a bigger burden by having more appointments, but I also would want to be mindful that if we're not meeting the goals that we that we'd hoped, you know, continuing to touch base and maybe having like a shorter duration between appointments if that was feasible. Um, there's also some good feedback from the cochlear implant manufacturers on the apps so you can kind of help point the parents towards that and some goal setting and letting them have some reflection of that at, at home and really just talking through, you know, what are the barriers. We tried this, okay? That didn't work. You know, let's brainstorm again. You know what? What can we continue to brainstorm through and how can we work together?
Carrie: [00:35:50] The great. So one other question kind of before we wrap up. I know that you have said that you implemented this co treat model not just a few years ago. And so have you noticed that by implementing this, you have seen, you know, greater success with just whatever you're trying to measure, whether it's hearing hours, percentage and goal setting and things like that and moving in the right direction.
Erin: [00:36:24] Do we have that data?
Carrie: [00:36:27] Or maybe you just it doesn't really need to be data, but just as clinicians in general, like do you just feel like from that family perspective and working with families over time since implementing this co treat? Do you feel like you're making a lot more progress than if you were just kind of in your own silos of like speech pathology over here and audiology over here?
Erin: [00:36:50] 100%.
Erika: [00:36:51] Absolutely. I feel like the family feels more supported as the audiologist there. They want to hear so they can talk. So I'm the hearing piece, but having the talking piece there is so important. So, yes, I definitely I feel like there's been a lot of success with that.
Erin: [00:37:09] We get a lot of positive feedback from families. We get a lot of positive feedback from the professionals that we talk to that they're local professionals. We are tracking their auditory skills. So we have a lot of children that we see. There's a red dot on the graph every time we see them and we can see things going in the right direction is going in the right direction, even if it's very slow. We do get a lot of. Positives from it.
Carrie: [00:37:41] Yeah, I do. I've always believed that, that the relationship between the speech pathologist and audiologist is so critical and is like what you just said, such a valued input for the families to, to have everybody kind of working together to. But as we kind of wrap up with today's episode, is there anything that you would like to add that I didn't ask you?
Erika: [00:38:11] I think it just.
Erika: [00:38:12] Really takes a village in that communication with the entire care team and the family is is vital, especially with these young ones. There's a lot of dialog with the early interventionists. Other resources, family caregivers. I think just the open communication with everyone is just really important.
Erin: [00:38:33] I definitely agree. And there's no one size fits all approach to where time or retention aids. There are so many different companies out there on Etsy and and different things to help and just, you know, figuring it out on what works best for each individual child and family. And if one doesn't work, that's okay. Try another one. And connecting families, we connect a lot of families to talk to each other because we can talk all day about things that have worked or we've tried or have tried worked for other people, but we haven't, you know, haven't experienced it ourselves. So.
Erika: [00:39:21] No.
Erika: [00:39:21] I've also reframed some of my counseling, at least from the beginning, as someone is starting the cochlear implant process to at least say the wear time on the front end will be a challenge just so it's not a surprise. And so if we easily move past it, then great. But sometimes I think parents are a little surprised by the need for the retention aids and the things like that. So I'm just kind of trying to set up the. The brainstorming.
Erika: [00:39:49] Later.
Carrie: [00:39:51] Yeah, which is probably helpful when you go through the the strength based coaching with the families. You've already kind of planted that seed before they've even started that journey, so they expect you to be asking about it later on.
Erika: [00:40:05] Yeah, and.
Erin: [00:40:06] We talk about it ahead of time, so it's not a surprise when it's a challenge later like.
Carrie: [00:40:14] If our listeners want to get a hold of you or do you guys have any resources for for just the topic that we talked about today, like hearing hours, percentage or anything that you guys use in your toolbox that's out there for others to use?
Erin: [00:40:35] You can definitely reach us via our email addresses. I think we've shared. You have those, please. You know, we are fine with sharing those. We definitely have social media for our clinic, um, and Instagram, Facebook and Instagram for the clinic. Um, Erika has designed some infographics, don't know how where those technically live, but.
Erika: [00:41:02] I'm happy to share infographics with anybody. You can reach out to me via email. Um, is it helpful to go ahead and state my email now?
Erika: [00:41:10] Is that something you want.
Carrie: [00:41:11] To go ahead and do that? And then I can definitely link it in the show notes as well.
Erika: [00:41:16] Sure. My email isErika, Erika dot Gannon g. A g n o n. At Unk Health unk.edu. And I'm happy to share any infographics and resources we have to help with this dialog.
Erin: [00:41:32] And my email address is is the same as Erika's. Except Erin. Erin Dot Thompson. Thompson.
Carrie: [00:41:45] All right.Well, Erika and Erin, I want to thank you both for being wonderful guests and participating in role play and and the EmpowEAR Audiology podcast. That was in wonderful conversation. And I'm sure all of our listeners will be very excited to hear all of the information and hopefully they will reach out if they would like more. So thanks again for being a guest.
Erika: [00:42:09] Thank you so much. Thank you.
Erin: [00:42:10] So much.
Announcer: [00:42:11] This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 59 of emmpowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have two guests from North Carolina with me, and I am going to take a second and read a little bit about their bios. They are an SLP and audiology duo. I have Erin Thompson, who has been working with the Children's Cochlear Implant Center at University of North Carolina since July of 2004. She earned her bachelor's from Appalachian State University and her master's in speech and hearing science from UNC Chapel Hill. She became a listening and spoken language specialist in 2009. Erin conducts listening and spoken language parent participation sessions, speech and language diagnostics for children who are deaf and hard of hearing. A passion has been mentoring students and professionals across North Carolina, the US and abroad. Erin has been a member of the Global Foundation for Children with hearing Loss and has traveled to Vietnam on three occasions and also Mongolia on one occasion to help provide mentoring and training abroad. She has spent time coaching a team of speech language pathologists in Auckland, New Zealand. Erin expanded her interest in 2019 to include the role of Family Care coordinator for the Children's Cochlear Implant Center at UNC. She helps manage, facilitate and coordinate cochlear implant consultation referrals supporting all families through the CI consult process at UNC. I also have Dr. Erika Gannon. She is earned her bachelor's and doctorates in theology from the University of North Carolina at Chapel Hill. She is a pediatric cochlear implant audiologist at the Children's Cochlear Implant Center at UNC. In addition, she is the Audiology Clinic manager and program director of the CDP Grant. Erika's research interests include pediatric cochlear implant, device use and pediatric electric acoustic stimulation. Erika enjoys teaching and mentoring students. She co-teaches the cochlear implant course to UNC's audiology graduate students. So Erin and Erika, welcome to the EmpowEAR Audiology podcast. I'm so excited to have both of you.
Erin: [00:03:03] Thank you so much for having us. This is really great.
Carrie: [00:03:07] Yeah. So I know before the podcast started, we spoke a little bit and I had heard Erin talk at, I believe, the AmErikan Cochlear Implant Alliance Conference as well as the EDHI conference. And then as I reached out to Erin, she also looped in Dr. Gannon and Erika. And we to talk about two important topics today. And I am really excited for our listeners to hear all about their work with full time use of hearing technology and its impact on language development, as well as the importance of co-treatment and strength based coaching to impact device where time and probably many other things with strength based coaching. So I am glad both of you are here and because this is kind of a audiology, professional and related services podcast, I always like to find out from my guests, how did you actually venture into the field of audiology and speech language pathology? So I don't know. Erin Do you want to start with your venturing into speech language pathology?
Erin: [00:04:23] Sure. This is kind of funny because I think it's kind of a throw out to like all the moms out there who encourage their kids or think, Hey, you'd probably be really great at X, Y or Z. And my mom in high school was like, Really I think you'd be great as a speech pathologist? And I took one of those, or she had said that and I had taken one of those personality typing, What should you be when you grow up kind of thing? And speech pathology and audiology were in the top three and I was like, Oh, absolutely not. My mom wants me to do this. No way am I doing this. So I went in. I went to Appalachian, undeclared and undecided. And my roommate at App my freshman year was in the speech pathology program. And so I got to see what she was doing and I was like, you know what? Maybe I do want to take some intro classes. And so I did and loved it and then had the challenge when I graduated from APP. On whether I wanted to go into speech or audiology. I was really torn and then found my my perfect match at UNC as a speech pathologist working with kids with hearing loss. So kind of a perfect fit. So that's a.
Carrie: [00:05:43] Great story about my mom's, right? Yeah. I was just going to say, your mom's always right. Right? Yeah. Um, Erika, how did you venture into audiology?
Erika: [00:05:55] I knew I always wanted to be in health care. I originally thought I wanted to be a nurse and figured out quickly that I don't do needles or blood. And so as I was trying to explore other options that still left me in health care, I had a friend who was in the audiology program and recommended I observe a little bit and I was volunteering at the hospital and got to observe someone like two weeks out from their cochlear implant activation. And I was I was hooked ever since.
Carrie: [00:06:26] Another great story, too. So both of you are at UNC. Do you want to do you want to share a little bit about the Children's Cochlear Implant Center? There you have a lot of great people that are part of your network. So one of you wants to take that lead.
Erika: [00:06:46] Sure. So the Children's Cochlear Implant Center at UNC. We've been seeing children with hearing loss in North Carolina for over 30 years and have performed over 2000 pediatric cochlear implants. We are a part of a multidisciplinary team and we have both pediatric cochlear implant audiologists, speech language pathologists that specialize in listening and spoken language. We also have a pediatric research group in the office as well, and we are a teaching clinic for both audiology and speech language pathology grad students, and we work with a greater interdisciplinary team at UNC, with our pediatric pediatric diagnostic team and our ear, nose and throat physicians.
Carrie: [00:07:30] Yeah, lots of opportunities to see lots of kids and be involved in a lot of research, which kind of is a great segway into the things that both of you are interested in, and that is that language development and how that impacts kids who are deaf and hard of hearing. And I think when you think about the world of pediatric deafness, a lot of the studies talk about the importance of early identification. We have newborn hearing screening, all of those important things. We talk a lot about technology and early interventions as part of language development, but one of the things that is typically not talked about that your group has spent a lot of time on, is that focus on on wear time can you one of you start sharing a little bit about your research and clinical experience in this in this area and why this is really important to consider?
Erika: [00:08:26] Sure. So wear time or getting the objective data from the speech processor regarding device usage for cochlear implants is a lot more recent than it is for hearing aids. We've only had access to this since maybe around 2014 or 2015. And so as this as a clinician, as this information became available, we felt like this was really a game changer because we're like, is this explaining why somebody isn't doing as well as we would want or not making the progress that we'd expected? And so we just we had all of this new information about patients we were seeing, you know, different where time and trends for babies versus teenagers. And it felt like we really had this key piece to something important. And so we really wanted to dive harder into that. And so we've looked at some some wear time information for this youngest group of babies, like birth to three. We have several articles on that. And also have looked a little bit about where time and the single sided deafness population.
Carrie: [00:09:32] So when, as you said, you know, for cochlear implants, this is been about 2014, 2015 that we've been able to have this data logging and hearing aids was a little before that. But again, a lot of great information. Do you as practitioners, whether from speech pathology, audiology? Do you ever ask parents like, Hey, how often is your child wearing the cochlear implant? And then do you ever see kind of a mismatch between what you're pulling up on the computer and what a parent might be reporting?
Erika: [00:10:09] Yes. We always try and ask the question, How's it going? How? How is wear time device use, especially, you know, use of like retention Aids. And unfortunately there is a trend that. Over or over reporting device usage. Parents often say they're wearing it more than the objective data shows. This is a trend in more than just cochlear implants. It's also present in hearing aid literature as well. And I think it's likely just little ones are so dynamic with eating and napping and multiple care providers. I think it's I think it's easy to overestimate the usage.
Carrie: [00:10:47] And that's kind of another way that you started thinking about looking at this was looking at this concept of hearing hours percentage. Can you share or explain what this is and why this might be a better way of looking at things rather than like kind of full time usage?
Erika: [00:11:10] Sure. So full time usage in the literature, it wasn't consistent. We were seeing, you know, 8 hours or 10 hours or clinicians were using phrases like eyes open ears on, which is a wonderful phrase and a and a great goal for parents. But sometimes, you know, that vague term isn't concrete. And then 8 or 10 hours, we were just seeing that, you know.
Erika: [00:11:34] It.
Erika: [00:11:35] Sleep wake time is so different for babies versus teenagers that.
Erika: [00:11:41] You know what is.
Erika: [00:11:41] Actually the best way to talk about wear time. So we noticed trends are like teenagers are wearing their equipment, more toddlers are wearing their equipment a little less. And we started to incorporate the sleep wake into how we define full time use or this hearing hours percentage. This was first published and Lisa Parks age at full time use predicts language outcomes better than age of surgery. In children who use cochlear implants and essentially the takes where time as a percentage of wake time based on the age of the child. So an example is a 15 year old is awake 15.5 hours a day on average. A 12 month old is awake 11 hours a day. If you take eight hours, if we were using, you know, full time use at eight hours for the 12 month old, that's 73% of their waking hours. But for a 15 year old, it's only 52% of their waking hours. So HHP better reflected the age of the patient.
Carrie: [00:12:43] Wow. Just out simple example right there with the difference of the age and the average sleep time really is telling of the you know, what we want to achieve. Is there a. I guess, percentage that as audiologists and speech language pathologist you would like to see for the hearing hours percentage.
Erika: [00:13:09] We would always love it to be 100%, but we are practical. Our research has found 80 to 100% is really the goal.
Carrie: [00:13:19] Okay, that makes sense. So it kind of factors in maybe bath time, shower times, those waking up and just kind of getting started with your day and then kind of going to bed having a couple of hours right there.
Erin: [00:13:33] Yeah. And that's where we really saw the research to show that kids had typical language scores when they hit that 80%. And that's where we were really seeing kind of the magic number kind of all align. 80% equaled some of those those stellar language scores.
Carrie: [00:13:52] Okay. And yeah, I would love to dig a little bit deeper into that as well. One of the other questions I know, Erika, you had mentioned that you there was some different research, too, with single sided deafness. And, you know, we're seeing younger kids get cochlear implants who have maybe typical hearing in one ear and a profound hearing loss in the other ear. Does the hearing hours percentage matter for those kids, too?
Erika: [00:14:25] Yes.
Erika: [00:14:26] So. The information we have for the single sided deafness. Population isn't for language scores on the whole, but we have that linked with single word scores for CNc, and so the higher the hearing hours percentage, the better the CNC outcome. There's also a positive correlation with HP and spatial release of masking scores. So a true measure of binaural hearing. So we are seeing that HP is a factor for those things in that single sided deafness population.
Carrie: [00:15:00] Okay. Do you see that? This is just a sidebar question to more acceptance of the cochlear implant if they increase their wear time to. What have you not looked into that.
Erika: [00:15:14] For.
Erika: [00:15:15] Patients or in.
Erika: [00:15:16] General, just.
Carrie: [00:15:18] Patient? Because I know sometimes they may not always kind of acclimate to the cochlear implant, but do you find that with the increased hearing hours percentage, they may acclimate or be better users of the cochlear implant?
Erika: [00:15:34] What we saw was.
Erika: [00:15:35] That as kids got into their teenage years wear time dropped. And we think that's just a matter of calling attention to something and kind of those really vulnerable teenage years, but started to see an uptick as patients got a little bit older. So I'm hoping once they get past some of those teenage years, we can expand our data and and look a little bit more into that. But honestly, a lot of it was related to age.
Carrie: [00:16:01] Okay. That makes sense too. So I know that article that both of you authored with some of your colleagues titled Age at Full Time Use predicts language outcomes better than age of surgery and children who use cochlear implants. And you kind of touched on this a little bit, but you found that for both receptive and expressive language, age of full time use was found to be a better predictor of outcomes than than the age at the surgery. So in your literature, you also found that it took an average of 17 months for children to establish that use, and only 52% reached that milestone by the age of three. So as you guys are thinking about where you're at in a big cochlear implant center and co treating and certain occasions and thinking about that whole child and the family and everybody else that's involved. Educators, early interventionist. What are some of those factors that might contribute to that statistic? Because I feel like. That is kind of a lower statistic overall.
Erin: [00:17:13] Yeah. So a couple of things there. I'm going to take over for a second and kind of jump in. Um, one of the things is that I want to touch on because I always stress this in our presentations as well whenever we're talking about this. We were finding that full time use is a better predictor of language outcomes at age three than age of surgery. We are just clear, always clarify. We are not questioning or saying that they shouldn't have surgery later, that we still absolutely you know, are proponents and promoting earlier is better. We aren't questioning that. We aren't looking we're not changing that at all. But they do have to wear it after surgery. You can have surgery at any time at six months. Not that we're doing them at six months right now, but eight months, 12 months. But if they aren't wearing it, then it does impact outcomes. Um, but back to the, you know, it takes an average of 17 months to reach full time use and only 52% did that by age three. It's almost, you know, the question of what are the factors that contribute to this.
Erin: [00:18:20] It's almost in reverse of what doesn't impact this. Everything impacts it. Um, some of the first things that we that I think folks notice or think about are any additional diagnoses. Are there other things that are even more of the higher priority for a child's health and well-being is and taking care of of those other health factors. Um sensory needs we find impact where time we of course see differences with different socioeconomic factors, parents schedules, um, kids at home versus in daycare potentially pending what education or what the what the what the the families or the child care providers have been taught about the importance of where time not that they aren't educated, but what have they been taught about where time and how important that is. Um, distance from school, distance from clinics, those kinds of things. Then the access to that education about the importance of, of wear time and then sometimes just the differences in counseling techniques and coaching techniques and, and how have their school providers, clinic providers, private providers, audiologists, um, pediatricians, ENTs explained the importance so many things have have impacted and can impact this these statistics.
Carrie: [00:19:58] Yeah, which is, I think, a great way to kind of get into what your team at UNC has really looked at to try to maybe close some of those gaps and increase the number that reached that milestone by three years of age. And I think our conversation about hearing hours percentages is really an important factor in that too. But one thing that you have shared is that you have talked about the need for strength based coaching, and that's really helping with working with families. Can you share a little bit more about this model too, of co treating with audiology and speech and how this really impacts families as a as a whole?
Erin: [00:20:46] Absolutely. So the the quick, easy definition of co treating is audiologists and speech pathologists working together in an appointment and treating a child and family at the same time. Um, it's something that has kind of been brewing at UNC since 2011 when we actually got to hear Dimitry Dornan and the Hear and Say crew from Australia talk at the AG Bell Conference in Scottsdale, Arizona back in 2011. But then we weren't able to kind of put it into practice at UNC until a few years later. We had our director at the time had to work to find some grant money to help us be able to account for our time because you couldn't bill for coach reading. Um, and so we were able to, to put that in into play in 2015. But in depth it's speech pathologists and audiologists collaborating. We talk ahead of time before an appointment to see what are the needs of that child and family. What are some things that we want to work on together? Um, make a goal. Make a plan. We collect information during the appointments about auditory skills, we use our functional listening index to track audiological audiology skills, audition skills. Um, we are providing caregiver support and that's where our strengths based coaching comes in. And then we are also communicating afterwards. We're talking to local providers, sharing, updating school professionals, educational audiologists, early interventionists, private therapists. So we're all kind of working on the same page. Um. And then that kind of leads into that strength based coaching. Yes.
Carrie: [00:22:44] So share a little bit more about that and how your team's kind of been trained and how that impacts family connections.
Erin: [00:22:53] Um, yeah. So we have all and Erika has done this as well. Think all the audiologists have had some level of training exposure to the formal, um, program, which is through the Center for School Transformation. Um, and it is an Evocative Coaching, strengths based coaching program that we have all been through. Um, and it is looking at things and very asset based, strengths based taking what is important and a strength for a professional, a parent and building off of that. Um, in all very positive ways. Um, it is learner driven. It's what is important to the family and it's based on evocative coaching and positive psychology, adult learning theory, appreciative inquiry and nonviolent communication so that you should do versus how could you what would you want to do? What would that look like moving forward with your family?
Carrie: [00:24:02] So if I would put both of you on the spot here as kind of thinking about all of the topics we've talked about in particular, like maybe you have a family who comes in and says, hey, you know, I'm wearing my child's wearing this device all the time. And as your co treating together, you realize this really isn't what's happening. Would you be able to roleplay maybe a short conversation that you may be having to discover, um, maybe the hearing hours percentage or, um, you know, what are some factors that might be happening that is reducing that time? Could you use some of those strength based skills to kind of role play for listeners?
Erika: [00:24:53] Sure.
Erin: [00:24:56] All right. I'm going to be the clinician and Erika is going to be our parent or guardian in the clinic. And so I'll take that start of the scenario, Carrie, of, you know, looking at. Okay. All right, Erika, it's good to see you guys today. Pierce is now six months out from getting his implant. You know, you talked about coming in that you're feeling like things are going well and that you're looking at full time. You know, he's wearing it a lot and wearing it all the time. And, you know, we we looked at the data logging and and it looks like it is up from your last appointment. Last time it was around three hours a day of an average and now we're up to four hours. Um, and based on his awake time, um, of about 11 hours a day, that gives us a 36% HHP. And again, that's up from last time. Tell me something that has gone really well over since you were here last time.
Erika: [00:26:05] Yes.
Erika: [00:26:05] So since the last time we were in, we've started using a headband and I have found that that has been helpful. I find that the the easiest time is in the morning. It's a little hard to get it on when we're trying to get breakfast and everybody awake and out the door. But once once it's just he and I in the morning and we have some time to really have one on one interaction. I'm finding that we're we're more successful at that time, especially with the headband.
Erin: [00:26:34] I'm really glad to hear that the headband's been helping. I know that we talked about that last time and you were going to try it out. So I'm really I'm really glad to hear that that has been has been a benefit. Um, and that it sounds like some one on one time together in the morning has is is good as well. So what tell me about a time that's a little more challenging. What is a time of the day that's more challenging but also kind of something that feels important to you where there's a lot of language or just a special time with family? What where is a time like that during the day currently?
Erika: [00:27:12] Yeah, I.
Erika: [00:27:13] Think maybe the hardest, the hardest time of the day, but the time that we could all get the most benefit from is like the dinner prep and then dinner time. It's hard with older sister and then playing and maybe being kind of far away from me in the kitchen when I'm trying to cook and that their interaction together, it's just hard for me to keep it on them during that time. But there's lots of talking and as we're talking about dinner and you know, how is your day? I feel like that that would be a time that we could improve on. That would be important.
Erin: [00:27:45] Dinner, that dinner time after work, school time is so language rich. A lot of times that is at my house as well. So with my guess, he's probably already you're probably trying the headband after dinner right now would be my guess. Okay. Well, that's good. That's good. I'm wondering, what do you think it is about the morning time that's going so well that maybe we could add in and kind of brainstorm a way to add that into that dinner time.
Erika: [00:28:16] Yeah, he's he's playing with sister a lot, and they're in the living room and I'm in the kitchen, which are kind of connected, but, you know, a little bit farther away. I don't know. I'm wondering if while they're playing, if we could kind of try and bring them a little closer to me and have her maybe not put the devices on him, but just maybe help me monitor it more or just her interaction one on one interaction with him. Um.
Erin: [00:28:41] I like it. I like that idea. So that sounds like some one on one attention is what's been helpful and how do we create that around dinner time? And maybe, maybe Emmy, um, who knows, She might be able to put equipment on at three or so. She's four now, isn't she? How old is five? Oh, my gosh. Okay. She's five. Um.
Erika: [00:29:04] But she.
Erika: [00:29:05] Could probably.
Erika: [00:29:06] Play with him. And he loves books, so I'm sure she could sit with him and he loves to be read to. So if she could sit with him and maybe flip through some stories and books, I think he would really enjoy that time. And maybe that would help distract him.
Erin: [00:29:18] Yeah, maybe he wouldn't. Yeah. Leave him. Leave him be. I think that's a great idea. How do you feel about trying that out between now and our next? Um, next time you guys are here?
Erika: [00:29:31] I think that feels reasonable.
Erika: [00:29:32] We've got, like, a basket of books that we could kind of position in a spot that would kind of be close enough to me, but they could still have their their place to play and I definitely think that's something we could implement together.
Erin: [00:29:45] All right. Let's try it out. Let's see. Let's see if taking what we know has been helpful in one part of the one part of the day and see how that kind of can maybe carry over and and maybe Emmy won't be ten by the time you come back.
Carrie: [00:30:04] But that was fabulous role playing Erika and Erin. And and I love it. But I guess just listening and thinking about what you guys did and I want you to jump into I loved Erin, how at first you kind of laid the facts down, right? I mean, in a very good like, you know, easy to understand way. And then right after that you were able to ask or like what, you know, celebrate those small successes. So even though it wasn't where probably you would want to see it, it had increased since the last time. So, you know, celebrating those small, you know, successes all of the time is probably really a critical piece of that strength based coaching. Um, but I love how you always reflected too, on what the parent said. So you would just kind of, you know, letting Erika share and then you would just really rephrasing or reflecting and what she said. So you would. And then from there you would kind of jumped into like, can you tell me some of those challenges? You told me your successes. Tell me your challenges. And, you know, she brought up the dinner time and things like that, but then you went right into, you know, validating, you know, oh, this would be a great time to, you know, try out some more language and maybe help with that.
Carrie: [00:31:27] And then I love what you say, too, that you're like, I'm wondering. So you kind of get that wonder piece in. But for the parent and how you know, how I wonder if you, you know, can you know, and kind of help them wonder, too, in that situation. And then that really led into mom coming up with her own solution. Right? Like her own goal for what that next step was. And then Erin validating again and rephrasing, um, that was helpful, you know, for think, Erika, to kind of process that and then just asking, how do you, you know, how do you feel about this? Do you think this is something that you can do and, you know, kind of how are we going to check in next time? So does that mean feel like that was kind of what you guys were sharing?
Erin: [00:32:19] That was our hope. That was our hope. And that's always kind of our hope. And we know that families really are trying. We don't have a single family that's really literally not ever trying to keep devices on. So we know there's always something to celebrate. There's always a success in there. And pointing that out because we could focus on the hard part and the quote unquote negative, but that's not going to refresh them to keep trying harder. So finding out what is what went well for them, their success, what was great for them might not be what we would have picked out as being a success and what is motivating or an important time of day. I might have all kinds of ideas of what would be a great the most perfect language, rich time of day to focus on. But if that's not the important motivating part for the family of what is important in their home and important to them, then it might not be as motivating for them to go home and try. So we do try to to focus on what is important to the family and it is their goal for their child. This is not my goal. It's what they have they're choosing to pursue. And so I do reflect back on a lot of those things. And we do. We all do so.
Carrie: [00:33:39] And if it's their goal, I'm sure they're more likely to implement it and follow through with it. I mean, that's the hope of it as well. What happens when you have a family that you've been doing co treating with and they aren't moving as quickly as you want? Do you see that more often? Do you bring them in more often? Do you connect with them virtually more often? Like how does that work to kind of keep the, I guess, ball going in the right direction?
Erika: [00:34:11] Yes.
Erin: [00:34:14] I think and again, you know. Erika, please jump in. Um, think I think we do think it always is just very dependent family to family on why or what seems to be the hurdle or hurdles. And then if it's distance or scheduling, then we might not try to get them in more often. It might be more phone calls or touching base or connecting with their local early interventionist or school provider or something like that to or phone calls or emails or. Kind of trying to figure out what the hurdle is and then not creating more of a hurdle, but some sort of bridge. What do you think, Erika?
Erika: [00:35:00] For sure. And if there's.
Erika: [00:35:04] I don't want.
Erika: [00:35:05] To put a bigger burden by having more appointments, but I also would want to be mindful that if we're not meeting the goals that we that we'd hoped, you know, continuing to touch base and maybe having like a shorter duration between appointments if that was feasible. Um, there's also some good feedback from the cochlear implant manufacturers on the apps so you can kind of help point the parents towards that and some goal setting and letting them have some reflection of that at, at home and really just talking through, you know, what are the barriers. We tried this, okay? That didn't work. You know, let's brainstorm again. You know what? What can we continue to brainstorm through and how can we work together?
Carrie: [00:35:50] The great. So one other question kind of before we wrap up. I know that you have said that you implemented this co treat model not just a few years ago. And so have you noticed that by implementing this, you have seen, you know, greater success with just whatever you're trying to measure, whether it's hearing hours, percentage and goal setting and things like that and moving in the right direction.
Erin: [00:36:24] Do we have that data?
Carrie: [00:36:27] Or maybe you just it doesn't really need to be data, but just as clinicians in general, like do you just feel like from that family perspective and working with families over time since implementing this co treat? Do you feel like you're making a lot more progress than if you were just kind of in your own silos of like speech pathology over here and audiology over here?
Erin: [00:36:50] 100%.
Erika: [00:36:51] Absolutely. I feel like the family feels more supported as the audiologist there. They want to hear so they can talk. So I'm the hearing piece, but having the talking piece there is so important. So, yes, I definitely I feel like there's been a lot of success with that.
Erin: [00:37:09] We get a lot of positive feedback from families. We get a lot of positive feedback from the professionals that we talk to that they're local professionals. We are tracking their auditory skills. So we have a lot of children that we see. There's a red dot on the graph every time we see them and we can see things going in the right direction is going in the right direction, even if it's very slow. We do get a lot of. Positives from it.
Carrie: [00:37:41] Yeah, I do. I've always believed that, that the relationship between the speech pathologist and audiologist is so critical and is like what you just said, such a valued input for the families to, to have everybody kind of working together to. But as we kind of wrap up with today's episode, is there anything that you would like to add that I didn't ask you?
Erika: [00:38:11] I think it just.
Erika: [00:38:12] Really takes a village in that communication with the entire care team and the family is is vital, especially with these young ones. There's a lot of dialog with the early interventionists. Other resources, family caregivers. I think just the open communication with everyone is just really important.
Erin: [00:38:33] I definitely agree. And there's no one size fits all approach to where time or retention aids. There are so many different companies out there on Etsy and and different things to help and just, you know, figuring it out on what works best for each individual child and family. And if one doesn't work, that's okay. Try another one. And connecting families, we connect a lot of families to talk to each other because we can talk all day about things that have worked or we've tried or have tried worked for other people, but we haven't, you know, haven't experienced it ourselves. So.
Erika: [00:39:21] No.
Erika: [00:39:21] I've also reframed some of my counseling, at least from the beginning, as someone is starting the cochlear implant process to at least say the wear time on the front end will be a challenge just so it's not a surprise. And so if we easily move past it, then great. But sometimes I think parents are a little surprised by the need for the retention aids and the things like that. So I'm just kind of trying to set up the. The brainstorming.
Erika: [00:39:49] Later.
Carrie: [00:39:51] Yeah, which is probably helpful when you go through the the strength based coaching with the families. You've already kind of planted that seed before they've even started that journey, so they expect you to be asking about it later on.
Erika: [00:40:05] Yeah, and.
Erin: [00:40:06] We talk about it ahead of time, so it's not a surprise when it's a challenge later like.
Carrie: [00:40:14] If our listeners want to get a hold of you or do you guys have any resources for for just the topic that we talked about today, like hearing hours, percentage or anything that you guys use in your toolbox that's out there for others to use?
Erin: [00:40:35] You can definitely reach us via our email addresses. I think we've shared. You have those, please. You know, we are fine with sharing those. We definitely have social media for our clinic, um, and Instagram, Facebook and Instagram for the clinic. Um, Erika has designed some infographics, don't know how where those technically live, but.
Erika: [00:41:02] I'm happy to share infographics with anybody. You can reach out to me via email. Um, is it helpful to go ahead and state my email now?
Erika: [00:41:10] Is that something you want.
Carrie: [00:41:11] To go ahead and do that? And then I can definitely link it in the show notes as well.
Erika: [00:41:16] Sure. My email isErika, Erika dot Gannon g. A g n o n. At Unk Health unk.edu. And I'm happy to share any infographics and resources we have to help with this dialog.
Erin: [00:41:32] And my email address is is the same as Erika's. Except Erin. Erin Dot Thompson. Thompson.
Carrie: [00:41:45] All right.Well, Erika and Erin, I want to thank you both for being wonderful guests and participating in role play and and the EmpowEAR Audiology podcast. That was in wonderful conversation. And I'm sure all of our listeners will be very excited to hear all of the information and hopefully they will reach out if they would like more. So thanks again for being a guest.
Erika: [00:42:09] Thank you so much. Thank you.
Erin: [00:42:10] So much.
Announcer: [00:42:11] This has been a production of the 3C Digital Media Network.
Episode 58: empowEAR Audiology - Dr. Jace Wolfe
Announcer: [00:00:00] Welcome to episode 58 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the EmporEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hey, welcome to the EmporEAR Audiology podcast. I am really excited today to have a friend and a colleague with me, Dr. Jace Wolfe, and I'm just going to read a little bio about him before he comes on the air and shares a little bit about himself as well. But Dr. Jace Wolfe is the senior vice president of innovation at the Oberkotter Foundation and Hearing First. He is an adjunct professor at Salus University. He previously served as the editor for the American Speech Language and Hearing Association Division 9 Journal and is currently a co editor for plural publishing Core clinical concept series and cochlear implants. He is the author of the textbook entitled Cochlear Implants Audiologic Management and Consideration for Implantable Hearing Devices. And he is the co editor with Carol Flexer, Jane Madell and Erin Schafer. And for the textbook pediatric Audiologist, Audiology, Diagnosis, Technology and Management. The third edition and Pediatric Audiology Casebook. The second edition. He is also a coauthor of the textbook entitled Programing Cochlear Implants The Third Edition. His areas of interest are pediatric amplification and cochlear implantation, personal remote microphone technology and signal processing for children. So Jace, welcome to the empowEAR Audiology podcast. I'm so excited to have you.
Jace: [00:02:17] Thanks, Carrie, so much. I'm excited to be here. As I've told you before, I think the world of you both as an audiologist, even more so as a wonderful person and as an advocate who's passionate about advancing the outcomes of children with hearing loss. So it is an honor to be able to talk with you today and to be a guest on your podcast.
Carrie: [00:02:40] Well, thank you for being here too. I want to say thank you. And I met oh, goodness. It's been probably. I want to say it was like 12 or 13 years ago over in Berlin.
Jace: [00:02:53] Yeah, that's true. We're getting old for sure. I can't remember. I was. Yeah, it could have been 12 or 13 or 20. I'm not for sure, but it's been a long while now.
Carrie: [00:03:01] It has been. So what? Seasoned professionals now, Right.
Jace: [00:03:06] See, I like that a lot. That works a lot better than old.
Carrie: [00:03:09] Yes, exactly. Well, since you are a seasoned professional, I always like to ask audiologist or other professionals who come on the podcast, how did you venture into the field of audiology? Do you have a story behind that?
Jace: [00:03:25] Great question. I knew for certain, even when I was a small child, that I wanted to do something in the health care field. And gosh, in elementary school I can't remember the exact grade, but I started wearing contact lenses and I loved my optometrist. And so for a while, while I thought I'd be an optometrist, but when I started my freshman year at the University of Oklahoma, I took a survey course and every week a different health care professional would come in and talk about their discipline. And one week, a gentleman named Dr. Stephen Peyton came to the class and talked about audiology, and he was just on fire about audiology. He's very, very charismatic person. He's very well-spoken. But you could tell he loved what he did and he talked about what he did and really kind of entertaining and exciting ways. And it got me interested in audiology. And so I went and shadowed him a couple of times. And watching him work, you could see his love and passion for his work, even more so in the clinic than when he was lecturing about it. And his patients loved him. And you could tell the difference that he was making in such a positive way in his patients lives. And so I really have to say that a lot of my interest in audiology, I really attribute that to meeting Dr.
Jace: [00:04:48] Peyton and just observing what he did. And I will say that I probably stayed in the audiology program because he was an instructor at the University of Oklahoma where I attended and got my master's degree in audiology and then eventually my PhD degree. He introduced me to my wife and yeah, I stayed and got a PhD degree because of him as well. So I owe him a ton and you know, I have no regrets. I'm so grateful that I didn't skip class that day that he came and talked about audiology because I love my job. It's been a perfect fit for me. I know I'm biased, but I think audiologists are so important just in really promoting the quality of life of the patients that we serve. And that's true if you're a pediatric audiologist. But as we've seen even most recently with the presentation of the results of the Achieve study with older adults, our work makes such a big difference in the quality of life and the cognitive and neurological health of adult patients with hearing loss as well. So very grateful to be an audiologist, very grateful for Doctor Peyton as well.
Carrie: [00:06:02] Well, that's just a great testament for anybody listening out there. If you're asked to go into a college or a university class and talk about what you do, if you're passionate about it, you may get someone like you who is interested and follows that path.
Jace: [00:06:22] That's true. I hadn't even thought about it from that perspective. But yeah, we are definitely walking advertisements for the field of audiology, so it's probably important to always put our best foot forward.
Carrie: [00:06:34] Right, exactly. So I know recently you've kind of made a little shift in your role as an audiologist and you do have a new role with the Oberkotter Foundation and Hearing First, do you want to share a little bit about what you do and maybe a little bit about hearing first as well?
Jace: [00:06:54] Sure, sure. So you're exactly right. I did, about four months ago, make a big professional career change For the 20 years prior to that, I had worked at Hearts for Hearing, which is a great place. And I still think the world of hearts for hearing. It's a speech and hearing clinic that serves both children and adults in Oklahoma. I love the people I worked with at Hearts for Hearing. It was a great experience. Still, obviously no regrets there, but I had worked there for 20 years and I'd kind of reached a point in time in my life where I thought that a change might suit me well in this position. This opportunity came along with the Oberkotter Foundation. It just really suits my skill set and my passion for where I think I can make my biggest difference for children with hearing loss in particular, which is always been my biggest passion. I've worked with both children and adults, but my my focus for most of my career is really kind of resided more in the pediatric space. So in March of this year, 2023, I accepted a position as the senior Vice President of innovation at the Oberkoter Foundation and the Oberkotter Foundation. It's a private family foundation. It was started by Paul and Louise Oberkotter back in 1985. So almost 40 years ago they had a daughter named Mildred or Mildie Carter, who was born with hearing loss and Mildie through a lot of work, learned to listen and talk. And she became a very successful, independent, very charming adult. But back then, it was really challenging to learn to listen and talk because we didn't have things like cochlear implants and universal newborn hearing screening and and even the type of hearing aid technology that we have today.
Jace: [00:08:49] And so this foundation was really developed to try to really optimize the outcomes of children with hearing loss to help them reach their full potential, to learn to listen and talk and just their overall outcomes that they would achieve in life. The organization has evolved over time as technology has evolved. Starting in 2013, they formed a subsidiary called Hearing First and Hearing First is a fully online digital community that has aimed to provide information for the families of children with hearing loss and then also the professionals who serve those families and those children as well. Up until about a year and a half ago, the primary focus of hearing first was to provide education and information both for families and listening and spoken language specialists or little providers. But more recently, there's also been an increased focus to provide information and education for pediatric audiologists as well. And that's one of two areas where I'm going to play a big role is in leading our efforts to provide best in practice educational experiences for pediatric audiologists. Also to I think they'll be really well received by the community still and educators and early interventionists, maybe in some cases physicians as well. And then eventually I will also lead an effort to support science and innovation, development of technologies and services that will hopefully address some of the challenges that we faced for many years and maybe move the needle or improve outcomes and quality of life for children with hearing loss. More on that later as that develops. But at the current point in time, my focus is really on the learning experiences for pediatric audiologists.
Carrie: [00:10:49] Yeah, and I know hearing first has really been a great resource for a lot of families out there for listening and spoken language professionals and those who work with children who are deaf and hard of hearing. I know I've taken quite a few courses and I've had the opportunity to present as a professional to for the hearing first community and love the learning community and the resources that they have and materials their podcast, their on demand learning. There's so many resources to explore within the hearing first community. But one of the things that I know you mentioned as your new role as innovation would be to really develop the audiology content or offerings that that hearing first is going to have. So can you maybe share a little bit about some of these upcoming learning courses that you have in the works, or is it a secret?
Jace: [00:11:51] Yeah, no, it's not a secret. We've got our calendar for the entire 2024 year finalized now and I am so excited about it. Carrie I think that that you'll be excited about it too, and I hope the pediatric audiology community is excited about it as well. And as we were developing that calendar, we really wanted to come up with subject topic areas that were really relevant and timely. We wanted to identify the areas where audiologists felt like they could benefit the most from from education, from new information. We wanted to identify areas that maybe weren't covered comprehensively in many of the pediatric audiology education programs, and that's no slight to the audiology programs. When you think about audiology and the way technology has expanded goodness, the scope of practice has become so large. And to be able to cover everything that an audiologist might do even in three years of courses and then a fourth year with the externship is really almost impossible to do it at a really in depth level. And so we're trying to identify some of those areas where either because there's not enough time to allocate to that in the programs or maybe technologies just changed so much in the last few years that there's a need to maybe bring everybody up to speed in the latest that's happening in a certain kind of sub topic area within pediatric audiology.
Carrie: [00:13:30] Okay. So I kind of think of that as maybe just in time learning when you're out there in the field and you have, um, whether it's your patients or you're getting your feet wet, you realize what some of those gaps you might have that you didn't get within your audiology program.
Jace: [00:13:51] Yeah, I hope that we meet that need for sure. We want to start out with the bang. And as I talked to a handful of people in the pediatric audiology space over and over again, I heard that genetics was a really big area of interest for for pediatric audiologists for a number of different reasons. I mean, one, maybe because it wasn't a topic that was covered in depth or in detail in their program, but also we're seeing such an increase in the number of children who are getting genetic testing. And as we will talk about in the course, there are new resources available to allow children to get genetic testing where in the past it may have been cost prohibitive to do so because sometimes the testing can be so expensive. But I can even speak from personal experience that when I receive the reports from those companies that do the genetics testing, sometimes those reports make my eyes kind of glaze over in my head spin because they're pretty complex, you know, in the way they describe the test findings. So our goal for this genetics course are really courses. It's really three fold. And one, we want audiologists to be able to review those reports and understand every aspect of the report so that they have a clear understanding of how the genetic testing would would really impact the long term outcome of that child. And we want to do that because we want the audiologist to know how they can best serve that child.
Jace: [00:15:30] Number two, And that would be just understanding how the diagnosis or the etiology might affect the child's outcomes. What type of management strategies might be best help the child to overcome any kind of challenges working with other professionals, interdisciplinary teams to address some other problems that the child might experience relative to any kind of genetic cause of the hearing loss. And then also to be able to inform families in a very family centered and also evidence based way as well, because oftentimes families have a ton of questions about those reports. And we want audiologists to be able to speak intelligently about what those reports mean for just the overall quality of life and outcomes of that child. And then finally, in third, we want audiologists to be equipped to be able to talk with other professionals at a high level about genetics and understand when genetic testing might be helpful and what the results mean as far as the management of that child is concerned. So super excited. In January, we're going to have a course that just talks about the basic fundamental science behind genetics. So it'll be chromosomes and DNA and RNA and transcription and the Molecular inheritance patterns, all the different things that you would need to know to really understand and have a good kind of foundational knowledge of genetics.
Jace: [00:17:04] And so that'll be good for a number of different people. And we're going to offer that course not just to audiologists, but everybody in the pediatric hearing health care community, including physicians and nurses and physicians assistants. Then in February, we'll follow that up with a course that talks about genetics as it relates to childhood hearing loss. So we'll talk about all the different types of recessive and dominant causes of childhood hearing loss. X-linked We'll talk about the different Nomenclatures like DF and A and DF and B and Gjb2 and what all that means. We'll talk about genetic counseling. We'll talk about how to counsel families. We'll talk about genetic therapies that might be on the horizon and what the timeline looks like for that as well. And that'll all cover the first couple of months of the year. And we were able to talk Hela Azaiez, who is one of the foremost researchers in genetics as it relates to hearing loss. She's at the University of Iowa, which has a phenomenal, just wonderful program, genetics program that focuses on childhood hearing loss. And I've heard her present before on the topic. She's a wonderful presenter. She can take really complex information and share it in a way that's easy to understand. So I think the. The pediatric hearing, health care community and beyond will really love these first two courses that we're going to offer.
Carrie: [00:18:36] And how are those courses set up? I know in the past when I've taken courses, they've all been free. You have to be there to attend to get your, you know, professional hours. But how are these how are these set up?
Jace: [00:18:50] Great question. So they're all free of charge. There's there's no cost to take the courses and every course will provide CE credits. And the way we're going to set them up for 2024. And this we have ongoing discussions right now about the length of courses and the type of courses that we would offer. We we used to have 90 minute lectures and for busy clinicians, that's a big time commitment. So we're scaling it down. And each week, like the genetics course in January, will be four weeks long to cover all the basic science behind genetics. And there will be four 60 minute recorded lectures that the audiologist can watch on their own time. And then each week there will be a live session on Monday, and that happens at 8:00 Eastern Time. And that live session will give participants an opportunity to interact with the instructor. And that'll also be 60 minutes long as well. One huge difference for what we're going to do in 2024 compared to the past is that we will make the live sessions available after the fact. So busy clinicians with busy lives they might have a child who has basketball practice on Monday night at eight Eastern, or they might want to go see a show or something like that or watch The Bachelorette on Monday night, you know? And so if they have something, some kind of conflict on Monday night, they'll be able to watch it later and they'll have 30 days after the end of each course. So for the January course, you'll have all the way to the end of February to watch all of those lectures, both the recorded and the live lectures, and you'll be able to get full credit for that.
Carrie: [00:20:41] Oh, that's nice because I know like, yeah, that's been a challenge sometime for me is to in order to get all of the credit, I wasn't able to attend every single, you know, lecture. And then if you miss one, you don't get the credit. I mean, you still can get the information, but you don't get the credit.
Jace: [00:20:58] Yeah, you know, we want to we our primary goal is to to improve the outcomes of children with hearing loss. That's that's the primary mission. And so I think the best way to do that is to make sure that the information is as accessible as it possibly can be and that it's convenient as it possibly can be to access. And so we need to make sure that when clinicians are going to invest time in this, that they can get the full benefit and reward. And part of that is getting CE credits. You know, you only have a finite amount of time and as a busy clinician, you know, at the end of the day, you might just simply be tired or you might not feel well. And, you know, even if you don't have a conflict, it might be difficult to do it at a certain night, but you might find yourself waiting outside of your daughter's volleyball practice with 30 minutes to spare in the parking lot. And you could watch the lecture at that time, you know. So and we're also experimenting going forward, probably not in 2024, but with micro learning, because right now, especially younger generations, they learn in, you know, 140 or 280 character chunks, you know, on Twitter or they watch videos for 15 or 30s on TikTok. And so how can we package the most important information in a really concise way, too, so that, you know, it comes across on your social media feed or an email and you get the highlights that could really make a difference in how you serve children with hearing loss. So more to come on that front, too.
Carrie: [00:22:32] Yeah. So that were all of your innovation comes in into play, right?
Jace: [00:22:38] That's going to be a part of it for sure. Um, and you know a lot of pie in the sky stuff. I mean, with artificial intelligence. Now I've played around with, you know, presentations where you can create a PowerPoint presentation and then you can have a digital avatar that is indistinguishable from a real human, and that digital avatar can give your presentation. And so the sky is the limit on what we can do in the future. I think we might be able to create programs that would be digital avatars of parents and maybe professionals could practice providing, you know, news about, you know, a new diagnosis of a child with hearing loss and new identification. And they could get real time feedback from a digital avatar, and that would give them an opportunity to experience that before they have to do that, live with real people. And again, that's kind of pie in the sky. There's still a lot of development that would be necessary to make something like that happen. But those are the types of things that I think we can do in the future and types of things that we're considering for professional education may be a program that would generate simulated ABR waveforms, and you could mark those and analyze those on the fly because there's obviously so much knowledge and experience required to do that well. So I think it's going to be a lot of fun as we leverage some of this explosion that we're seeing in AI and technology and how we can apply that to the education of audiologists, both in professional settings and at the level as well.
Carrie: [00:24:10] And there's so much to explore at such a fast pace, too.
Jace: [00:24:14] Yeah. Oh, yeah, yeah.
Jace: [00:24:17] Without a doubt. But I'm so excited. I don't know. You know, there's 12 months obviously in the year and so we have a different topic for every month. But yeah, I would love.
Carrie: [00:24:26] To hear about you kind of talked about the first couple of months, but you, you got us through the winter here. Jace What what's coming up in the spring?
Jace: [00:24:39] Well, you tell me to stop when you want me to stop because I could stay here all day and talk about what we're going to do with the learning experiences in 2024. But in March we're going to have a learning experience on autism and the optimal audiology management of children who either have autism or there is a suspicion that the child has autism because so many kids, you know, if they're not speaking and the language doesn't appear to be developing, one of the first steps is to get a hearing test, to rule out hearing loss before they move on and have neurodevelopmental testing to diagnose autism. And so we were fortunate enough to get Jim Bodfish, who is a psychologist and a neuro developmental specialist at Vanderbilt. He's invested his entire career in studying autism, and he's going to give a lecture just kind of on the fundamentals or basics of autism. And then that's going to be followed up by two weeks where Ann Marie Tharp will talk about assessment, audiology, assessment issues with children who have autism. And then in the third week, management of children with autism, special considerations for fitting hearing aids, cochlear implants, that sort of thing. So I think that will be well received because I know as somebody who recently was in the clinic, that that can be really challenging to make sure you provide the best care for for children sometimes who, you know, are kind of averse to that care being provided.
Carrie: [00:26:09] Right? Yeah, We see a lot of that in the schools Having that dual diagnosis or trying to get a dual diagnosis I guess would be another challenge too. So we've got genetics and autism. What else do you have? Do you have a summer summer thing?
Jace: [00:26:26] Yeah, well, we can keep rolling in April. We're going to have a best of in the 2023 pediatric audiology literature. So we're going to have an all star cast. Jay Hall, Marlene Bogado, Renee Gifford and Ryan McCreary. And they're going to review some of the best articles that were published in 2023 and diagnostics and hearing aids and cochlear implants and then in miscellaneous issues. And so that should be a lot of fun because again, oftentimes when you're super busy in the clinic, it's hard to keep up with the literature. And there are so many journals out there, Even if that's all you ever did, it would be impossible to find all the best that's out there. So I think that this will provide something for everyone who would participate in that course, because I'm almost certain that at least some of these articles will be articles with which the participants aren't familiar. After that, in May, one of the things I'm most excited about a gentleman named Anthony Alleman, who's a medical doctor, he started out as a cochlear implant surgeon. He had completed a Neurotology residency and fellowship, but then went back and got or completed a fellowship in radiology as well. And he's a diagnostic radiologist now, and he's going to talk about imaging of the auditory system. And the goal will be the audiologists will be able to look at an MRI scan or a CT scan and identify all the relevant structures of the ear and be able to determine if it looks atypical or if it's typical and what that would mean for the management of the child as well.
Jace: [00:28:01] So I think that will be really exciting because that's something that we typically don't get a lot of in the program and it can kind of be intimidating if those kind of images are are put up in a staffing with other professionals and it just looks like a big black and gray bob on the screen. And it's kind of challenging to know what you're looking at. So I'm hopeful that that will be helpful as well. Um, and then in June, we're going to have a series of classes on optimizing the outcomes of children with exceptional needs. And we're going to have Angela Bonino from Vanderbilt University, who does great work in this area. Children with neurocognitive disorders, visual disorders, motor disorders. And she's going to talk about assessment and management for two weeks. And then Schuman He and Holly Teagle are going to finish up that course talking about cochlear nerve deficiency and how that's diagnosed and ideal management for that. So that'll take us through the first half of the year.
Carrie: [00:29:05] Wow, that's a great lineup. And are all of these going to be I think you mentioned Monday nights for the genetics or are they kind of different depending on the speakers?
Jace: [00:29:16] That's a great question. Most likely we'll have Monday night that will feature new courses for audiologists and then many months we will also have a Thursday night course that will be a repeat of a course that's been offered in the past. So like a repeat on middle ear measurements and otoacoustic emission measurements and a repeat on programing cochlear implants as well. So it's going to be a really full calendar. And I don't want to again, I don't want to bore your listeners, but we're going to have the rest of the way. Balance Assessment Management. Violette Lavender at Cincinnati Children's. I just want to say this because I'm excited about the topics and I don't want any of our great instructors to be left out, but I think that will be a really interesting course. Dr Lavender is an expert in that area and also sees patients clinically at Cincinnati Children's. In August, we're going to have a three week course on auditory Neuropathy spectrum disorder, led byThierry Morlet, who has worked his entire career with Chuck Berlin. And Linda Hood just published a two series article in ear and hearing looking at outcomes of 260 children served between 2005 and 2020. He's a subject matter expert in that area, and I think it'll be great. I know a lot of clinicians have a lot of questions about how to best serve children with auditory neuropathy. September, we're going to have a summary of the latest outcomes of some of the biggest studies in audiology. The LOCHI study out of Australia will cover that the outcomes of children with hearing loss study. Elizabeth Walker at the University of Iowa will cover that research out of Melbourne, where they look at outcomes of children who have been implanted before nine months of age with Shani Dettman and then the child development after cochlear implantation study, which was started by John Niparko many years ago.
Jace: [00:31:21] But they have outcomes now for children who are well into their teenage years. And Andrea Warner-Czyz is going to talk about that. Three more months October single sided deafness with Hillary Snapp at the University of Miami, who's an expert in this area, particularly with bone conduction devices and cross devices excuse me. And then Lisa Park, who is an expert in this area as well, particularly with cochlear implants, November, we're going to have beyond the audiogram Ben Hornsby and Hillary Davis of Vanderbilt. We'll talk about fatigue related to childhood hearing loss. Andrea Warner Czyz will be back to talk about social emotional issues, including self-esteem and quality of life and bullying and how to help children in those areas. And then we will have Irina Castellanos, who worked with David Pisoni for years. She's now at Ohio State University. She's a psychologist and a neuro developmental specialist. And she's going to talk about executive function, theory of mind, working memory and sensory integration as well. And then the very last month, we will have Kelly Baroque and an anesthesiologist from Cincinnati Children's, and they're going to talk about sedated ADR assessment and best practices in that area. So if you can't tell, I'm excited about this, I can't wait for it to start. I'm going to take all the courses myself, and I hope it's really beneficial for professionals and even more so, I hope that this information is beneficial ultimately for the children we serve.
Carrie: [00:32:59] Wow. Yeah, that's an incredible lineup and I know many of those presenters. So you definitely have top people who are presenting their research and their clinical expertise coming up. So I'm excited too. I'm going to have to like carve out my Monday night starting in 2024.
Jace: [00:33:23] Well, thanks so much. You know, in the future, we're going to have to get you on as well to talk about everything everyone needs to know about educational audiology and the latest and greatest in that topic area. So I will definitely be getting back. Can touch with you.
Carrie: [00:33:37] Yeah, well, I would be happy to talk about my passion and purpose as well. So thank you for. For that too. But if people are interested in this lineup, can you just share a little bit more about how they can find the lineup and how they can, you know, sign up for these classes?
Jace: [00:34:00] That's yeah, that's a great question. You can go to hearing first.org and there's a professional learning community there and you register as a professional in the professional learning community. And then if you wish, you'll start getting updates or regular correspondence via email from hearing first. And we we are targeting the fall as the point in time where we'll start really promoting these learning experiences and providing more information. So they'll definitely be more to come in the not so distant future, but between now and 2024, we also have some great courses that professionals can take. Now there's one ongoing right now where Nancy Young from the University of Chicago, where they have maybe the largest pediatric cochlear implant program in the country, is talking about medical management of children with hearing loss. And it's been great as well. So you can go there now and get involved with the courses that we have scheduled between now and the end of the year and then there'll be more to come. Once you're registered, you'll get that information in the future and we're going to have a really big marketing effort to to reach out to the pediatric hearing health care community starting in the fall to make people aware of these offerings and the opportunity to get the latest and greatest information at no cost with credits as well.
Carrie: [00:35:26] That is great because I know getting CEUs sometimes and the cost can be a challenge and to be able to really have a focus on that pediatric audiology population is going to be amazing and a great addition to the hearing First Community, Are you guys still going to be targeting like the deaf educators and speech language pathologists and parents as well?
Jace: [00:35:52] Yes, Yes. Without a doubt, there will still be a very concerted effort to have lots of products and cutting edge information for providers. And then, of course, families. We want to be a lifeline for families who are newly diagnosed or children with hearing loss. And then as they progress through the journey up until adult independence. And so that will definitely still be a core focus in the middle of the wheelhouse for for hearing first. And we will continue programs that have been exceptionally successful, like the Starts Here program, which seeks to educate expectant mothers about the importance of hearing and the hearing screening prior to the child. Even being born as well. And we've been able to touch almost a countless number of expectant mothers with that program over the past two years. You can learn more about the Starts Here program and how you might be able to get involved with that at the hearing first.org website as well.
Carrie: [00:36:53] Oh, good. Well, I'm glad we were able to touch base today. And I know you are new to Oberkotter to the hearing first. Um. And being able to get your skills and use them in a different way. I'm sure it's going to continue to grow over there. Hearing first, and I'd be interested to hear what your next round or your next innovation with science and technology and how that continues to evolve too, in your role.
Jace: [00:37:24] Well, let's do this again next year and I'll be able to tell you more.
Carrie: [00:37:28] Okay, We can definitely do that. So. Well, Jace, I just want to say thank you again for being a guest on the EmpowEAR Audiology podcast. And people can get on the hearing first website and get a hold of you if they have any other questions, and then find out about all of the resources and offerings that will be happening starting in August and leading up through 2024.
Jace: [00:37:53] Well, you're very welcome. And Carrie, thank you so much again for the privilege of being on your podcast and for your friendship. It's been an honor, and I've really enjoyed it.
Carrie: [00:38:02] All right. Well, thank you, listeners, for listening to the EmpowEAR Audiology podcast. If you enjoy this, please take a moment and give a five star review that helps other listeners to find the podcast and share it with others. Thank you and have a great day.
Announcer: [00:38:19] This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 58 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the EmporEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hey, welcome to the EmporEAR Audiology podcast. I am really excited today to have a friend and a colleague with me, Dr. Jace Wolfe, and I'm just going to read a little bio about him before he comes on the air and shares a little bit about himself as well. But Dr. Jace Wolfe is the senior vice president of innovation at the Oberkotter Foundation and Hearing First. He is an adjunct professor at Salus University. He previously served as the editor for the American Speech Language and Hearing Association Division 9 Journal and is currently a co editor for plural publishing Core clinical concept series and cochlear implants. He is the author of the textbook entitled Cochlear Implants Audiologic Management and Consideration for Implantable Hearing Devices. And he is the co editor with Carol Flexer, Jane Madell and Erin Schafer. And for the textbook pediatric Audiologist, Audiology, Diagnosis, Technology and Management. The third edition and Pediatric Audiology Casebook. The second edition. He is also a coauthor of the textbook entitled Programing Cochlear Implants The Third Edition. His areas of interest are pediatric amplification and cochlear implantation, personal remote microphone technology and signal processing for children. So Jace, welcome to the empowEAR Audiology podcast. I'm so excited to have you.
Jace: [00:02:17] Thanks, Carrie, so much. I'm excited to be here. As I've told you before, I think the world of you both as an audiologist, even more so as a wonderful person and as an advocate who's passionate about advancing the outcomes of children with hearing loss. So it is an honor to be able to talk with you today and to be a guest on your podcast.
Carrie: [00:02:40] Well, thank you for being here too. I want to say thank you. And I met oh, goodness. It's been probably. I want to say it was like 12 or 13 years ago over in Berlin.
Jace: [00:02:53] Yeah, that's true. We're getting old for sure. I can't remember. I was. Yeah, it could have been 12 or 13 or 20. I'm not for sure, but it's been a long while now.
Carrie: [00:03:01] It has been. So what? Seasoned professionals now, Right.
Jace: [00:03:06] See, I like that a lot. That works a lot better than old.
Carrie: [00:03:09] Yes, exactly. Well, since you are a seasoned professional, I always like to ask audiologist or other professionals who come on the podcast, how did you venture into the field of audiology? Do you have a story behind that?
Jace: [00:03:25] Great question. I knew for certain, even when I was a small child, that I wanted to do something in the health care field. And gosh, in elementary school I can't remember the exact grade, but I started wearing contact lenses and I loved my optometrist. And so for a while, while I thought I'd be an optometrist, but when I started my freshman year at the University of Oklahoma, I took a survey course and every week a different health care professional would come in and talk about their discipline. And one week, a gentleman named Dr. Stephen Peyton came to the class and talked about audiology, and he was just on fire about audiology. He's very, very charismatic person. He's very well-spoken. But you could tell he loved what he did and he talked about what he did and really kind of entertaining and exciting ways. And it got me interested in audiology. And so I went and shadowed him a couple of times. And watching him work, you could see his love and passion for his work, even more so in the clinic than when he was lecturing about it. And his patients loved him. And you could tell the difference that he was making in such a positive way in his patients lives. And so I really have to say that a lot of my interest in audiology, I really attribute that to meeting Dr.
Jace: [00:04:48] Peyton and just observing what he did. And I will say that I probably stayed in the audiology program because he was an instructor at the University of Oklahoma where I attended and got my master's degree in audiology and then eventually my PhD degree. He introduced me to my wife and yeah, I stayed and got a PhD degree because of him as well. So I owe him a ton and you know, I have no regrets. I'm so grateful that I didn't skip class that day that he came and talked about audiology because I love my job. It's been a perfect fit for me. I know I'm biased, but I think audiologists are so important just in really promoting the quality of life of the patients that we serve. And that's true if you're a pediatric audiologist. But as we've seen even most recently with the presentation of the results of the Achieve study with older adults, our work makes such a big difference in the quality of life and the cognitive and neurological health of adult patients with hearing loss as well. So very grateful to be an audiologist, very grateful for Doctor Peyton as well.
Carrie: [00:06:02] Well, that's just a great testament for anybody listening out there. If you're asked to go into a college or a university class and talk about what you do, if you're passionate about it, you may get someone like you who is interested and follows that path.
Jace: [00:06:22] That's true. I hadn't even thought about it from that perspective. But yeah, we are definitely walking advertisements for the field of audiology, so it's probably important to always put our best foot forward.
Carrie: [00:06:34] Right, exactly. So I know recently you've kind of made a little shift in your role as an audiologist and you do have a new role with the Oberkotter Foundation and Hearing First, do you want to share a little bit about what you do and maybe a little bit about hearing first as well?
Jace: [00:06:54] Sure, sure. So you're exactly right. I did, about four months ago, make a big professional career change For the 20 years prior to that, I had worked at Hearts for Hearing, which is a great place. And I still think the world of hearts for hearing. It's a speech and hearing clinic that serves both children and adults in Oklahoma. I love the people I worked with at Hearts for Hearing. It was a great experience. Still, obviously no regrets there, but I had worked there for 20 years and I'd kind of reached a point in time in my life where I thought that a change might suit me well in this position. This opportunity came along with the Oberkotter Foundation. It just really suits my skill set and my passion for where I think I can make my biggest difference for children with hearing loss in particular, which is always been my biggest passion. I've worked with both children and adults, but my my focus for most of my career is really kind of resided more in the pediatric space. So in March of this year, 2023, I accepted a position as the senior Vice President of innovation at the Oberkoter Foundation and the Oberkotter Foundation. It's a private family foundation. It was started by Paul and Louise Oberkotter back in 1985. So almost 40 years ago they had a daughter named Mildred or Mildie Carter, who was born with hearing loss and Mildie through a lot of work, learned to listen and talk. And she became a very successful, independent, very charming adult. But back then, it was really challenging to learn to listen and talk because we didn't have things like cochlear implants and universal newborn hearing screening and and even the type of hearing aid technology that we have today.
Jace: [00:08:49] And so this foundation was really developed to try to really optimize the outcomes of children with hearing loss to help them reach their full potential, to learn to listen and talk and just their overall outcomes that they would achieve in life. The organization has evolved over time as technology has evolved. Starting in 2013, they formed a subsidiary called Hearing First and Hearing First is a fully online digital community that has aimed to provide information for the families of children with hearing loss and then also the professionals who serve those families and those children as well. Up until about a year and a half ago, the primary focus of hearing first was to provide education and information both for families and listening and spoken language specialists or little providers. But more recently, there's also been an increased focus to provide information and education for pediatric audiologists as well. And that's one of two areas where I'm going to play a big role is in leading our efforts to provide best in practice educational experiences for pediatric audiologists. Also to I think they'll be really well received by the community still and educators and early interventionists, maybe in some cases physicians as well. And then eventually I will also lead an effort to support science and innovation, development of technologies and services that will hopefully address some of the challenges that we faced for many years and maybe move the needle or improve outcomes and quality of life for children with hearing loss. More on that later as that develops. But at the current point in time, my focus is really on the learning experiences for pediatric audiologists.
Carrie: [00:10:49] Yeah, and I know hearing first has really been a great resource for a lot of families out there for listening and spoken language professionals and those who work with children who are deaf and hard of hearing. I know I've taken quite a few courses and I've had the opportunity to present as a professional to for the hearing first community and love the learning community and the resources that they have and materials their podcast, their on demand learning. There's so many resources to explore within the hearing first community. But one of the things that I know you mentioned as your new role as innovation would be to really develop the audiology content or offerings that that hearing first is going to have. So can you maybe share a little bit about some of these upcoming learning courses that you have in the works, or is it a secret?
Jace: [00:11:51] Yeah, no, it's not a secret. We've got our calendar for the entire 2024 year finalized now and I am so excited about it. Carrie I think that that you'll be excited about it too, and I hope the pediatric audiology community is excited about it as well. And as we were developing that calendar, we really wanted to come up with subject topic areas that were really relevant and timely. We wanted to identify the areas where audiologists felt like they could benefit the most from from education, from new information. We wanted to identify areas that maybe weren't covered comprehensively in many of the pediatric audiology education programs, and that's no slight to the audiology programs. When you think about audiology and the way technology has expanded goodness, the scope of practice has become so large. And to be able to cover everything that an audiologist might do even in three years of courses and then a fourth year with the externship is really almost impossible to do it at a really in depth level. And so we're trying to identify some of those areas where either because there's not enough time to allocate to that in the programs or maybe technologies just changed so much in the last few years that there's a need to maybe bring everybody up to speed in the latest that's happening in a certain kind of sub topic area within pediatric audiology.
Carrie: [00:13:30] Okay. So I kind of think of that as maybe just in time learning when you're out there in the field and you have, um, whether it's your patients or you're getting your feet wet, you realize what some of those gaps you might have that you didn't get within your audiology program.
Jace: [00:13:51] Yeah, I hope that we meet that need for sure. We want to start out with the bang. And as I talked to a handful of people in the pediatric audiology space over and over again, I heard that genetics was a really big area of interest for for pediatric audiologists for a number of different reasons. I mean, one, maybe because it wasn't a topic that was covered in depth or in detail in their program, but also we're seeing such an increase in the number of children who are getting genetic testing. And as we will talk about in the course, there are new resources available to allow children to get genetic testing where in the past it may have been cost prohibitive to do so because sometimes the testing can be so expensive. But I can even speak from personal experience that when I receive the reports from those companies that do the genetics testing, sometimes those reports make my eyes kind of glaze over in my head spin because they're pretty complex, you know, in the way they describe the test findings. So our goal for this genetics course are really courses. It's really three fold. And one, we want audiologists to be able to review those reports and understand every aspect of the report so that they have a clear understanding of how the genetic testing would would really impact the long term outcome of that child. And we want to do that because we want the audiologist to know how they can best serve that child.
Jace: [00:15:30] Number two, And that would be just understanding how the diagnosis or the etiology might affect the child's outcomes. What type of management strategies might be best help the child to overcome any kind of challenges working with other professionals, interdisciplinary teams to address some other problems that the child might experience relative to any kind of genetic cause of the hearing loss. And then also to be able to inform families in a very family centered and also evidence based way as well, because oftentimes families have a ton of questions about those reports. And we want audiologists to be able to speak intelligently about what those reports mean for just the overall quality of life and outcomes of that child. And then finally, in third, we want audiologists to be equipped to be able to talk with other professionals at a high level about genetics and understand when genetic testing might be helpful and what the results mean as far as the management of that child is concerned. So super excited. In January, we're going to have a course that just talks about the basic fundamental science behind genetics. So it'll be chromosomes and DNA and RNA and transcription and the Molecular inheritance patterns, all the different things that you would need to know to really understand and have a good kind of foundational knowledge of genetics.
Jace: [00:17:04] And so that'll be good for a number of different people. And we're going to offer that course not just to audiologists, but everybody in the pediatric hearing health care community, including physicians and nurses and physicians assistants. Then in February, we'll follow that up with a course that talks about genetics as it relates to childhood hearing loss. So we'll talk about all the different types of recessive and dominant causes of childhood hearing loss. X-linked We'll talk about the different Nomenclatures like DF and A and DF and B and Gjb2 and what all that means. We'll talk about genetic counseling. We'll talk about how to counsel families. We'll talk about genetic therapies that might be on the horizon and what the timeline looks like for that as well. And that'll all cover the first couple of months of the year. And we were able to talk Hela Azaiez, who is one of the foremost researchers in genetics as it relates to hearing loss. She's at the University of Iowa, which has a phenomenal, just wonderful program, genetics program that focuses on childhood hearing loss. And I've heard her present before on the topic. She's a wonderful presenter. She can take really complex information and share it in a way that's easy to understand. So I think the. The pediatric hearing, health care community and beyond will really love these first two courses that we're going to offer.
Carrie: [00:18:36] And how are those courses set up? I know in the past when I've taken courses, they've all been free. You have to be there to attend to get your, you know, professional hours. But how are these how are these set up?
Jace: [00:18:50] Great question. So they're all free of charge. There's there's no cost to take the courses and every course will provide CE credits. And the way we're going to set them up for 2024. And this we have ongoing discussions right now about the length of courses and the type of courses that we would offer. We we used to have 90 minute lectures and for busy clinicians, that's a big time commitment. So we're scaling it down. And each week, like the genetics course in January, will be four weeks long to cover all the basic science behind genetics. And there will be four 60 minute recorded lectures that the audiologist can watch on their own time. And then each week there will be a live session on Monday, and that happens at 8:00 Eastern Time. And that live session will give participants an opportunity to interact with the instructor. And that'll also be 60 minutes long as well. One huge difference for what we're going to do in 2024 compared to the past is that we will make the live sessions available after the fact. So busy clinicians with busy lives they might have a child who has basketball practice on Monday night at eight Eastern, or they might want to go see a show or something like that or watch The Bachelorette on Monday night, you know? And so if they have something, some kind of conflict on Monday night, they'll be able to watch it later and they'll have 30 days after the end of each course. So for the January course, you'll have all the way to the end of February to watch all of those lectures, both the recorded and the live lectures, and you'll be able to get full credit for that.
Carrie: [00:20:41] Oh, that's nice because I know like, yeah, that's been a challenge sometime for me is to in order to get all of the credit, I wasn't able to attend every single, you know, lecture. And then if you miss one, you don't get the credit. I mean, you still can get the information, but you don't get the credit.
Jace: [00:20:58] Yeah, you know, we want to we our primary goal is to to improve the outcomes of children with hearing loss. That's that's the primary mission. And so I think the best way to do that is to make sure that the information is as accessible as it possibly can be and that it's convenient as it possibly can be to access. And so we need to make sure that when clinicians are going to invest time in this, that they can get the full benefit and reward. And part of that is getting CE credits. You know, you only have a finite amount of time and as a busy clinician, you know, at the end of the day, you might just simply be tired or you might not feel well. And, you know, even if you don't have a conflict, it might be difficult to do it at a certain night, but you might find yourself waiting outside of your daughter's volleyball practice with 30 minutes to spare in the parking lot. And you could watch the lecture at that time, you know. So and we're also experimenting going forward, probably not in 2024, but with micro learning, because right now, especially younger generations, they learn in, you know, 140 or 280 character chunks, you know, on Twitter or they watch videos for 15 or 30s on TikTok. And so how can we package the most important information in a really concise way, too, so that, you know, it comes across on your social media feed or an email and you get the highlights that could really make a difference in how you serve children with hearing loss. So more to come on that front, too.
Carrie: [00:22:32] Yeah. So that were all of your innovation comes in into play, right?
Jace: [00:22:38] That's going to be a part of it for sure. Um, and you know a lot of pie in the sky stuff. I mean, with artificial intelligence. Now I've played around with, you know, presentations where you can create a PowerPoint presentation and then you can have a digital avatar that is indistinguishable from a real human, and that digital avatar can give your presentation. And so the sky is the limit on what we can do in the future. I think we might be able to create programs that would be digital avatars of parents and maybe professionals could practice providing, you know, news about, you know, a new diagnosis of a child with hearing loss and new identification. And they could get real time feedback from a digital avatar, and that would give them an opportunity to experience that before they have to do that, live with real people. And again, that's kind of pie in the sky. There's still a lot of development that would be necessary to make something like that happen. But those are the types of things that I think we can do in the future and types of things that we're considering for professional education may be a program that would generate simulated ABR waveforms, and you could mark those and analyze those on the fly because there's obviously so much knowledge and experience required to do that well. So I think it's going to be a lot of fun as we leverage some of this explosion that we're seeing in AI and technology and how we can apply that to the education of audiologists, both in professional settings and at the level as well.
Carrie: [00:24:10] And there's so much to explore at such a fast pace, too.
Jace: [00:24:14] Yeah. Oh, yeah, yeah.
Jace: [00:24:17] Without a doubt. But I'm so excited. I don't know. You know, there's 12 months obviously in the year and so we have a different topic for every month. But yeah, I would love.
Carrie: [00:24:26] To hear about you kind of talked about the first couple of months, but you, you got us through the winter here. Jace What what's coming up in the spring?
Jace: [00:24:39] Well, you tell me to stop when you want me to stop because I could stay here all day and talk about what we're going to do with the learning experiences in 2024. But in March we're going to have a learning experience on autism and the optimal audiology management of children who either have autism or there is a suspicion that the child has autism because so many kids, you know, if they're not speaking and the language doesn't appear to be developing, one of the first steps is to get a hearing test, to rule out hearing loss before they move on and have neurodevelopmental testing to diagnose autism. And so we were fortunate enough to get Jim Bodfish, who is a psychologist and a neuro developmental specialist at Vanderbilt. He's invested his entire career in studying autism, and he's going to give a lecture just kind of on the fundamentals or basics of autism. And then that's going to be followed up by two weeks where Ann Marie Tharp will talk about assessment, audiology, assessment issues with children who have autism. And then in the third week, management of children with autism, special considerations for fitting hearing aids, cochlear implants, that sort of thing. So I think that will be well received because I know as somebody who recently was in the clinic, that that can be really challenging to make sure you provide the best care for for children sometimes who, you know, are kind of averse to that care being provided.
Carrie: [00:26:09] Right? Yeah, We see a lot of that in the schools Having that dual diagnosis or trying to get a dual diagnosis I guess would be another challenge too. So we've got genetics and autism. What else do you have? Do you have a summer summer thing?
Jace: [00:26:26] Yeah, well, we can keep rolling in April. We're going to have a best of in the 2023 pediatric audiology literature. So we're going to have an all star cast. Jay Hall, Marlene Bogado, Renee Gifford and Ryan McCreary. And they're going to review some of the best articles that were published in 2023 and diagnostics and hearing aids and cochlear implants and then in miscellaneous issues. And so that should be a lot of fun because again, oftentimes when you're super busy in the clinic, it's hard to keep up with the literature. And there are so many journals out there, Even if that's all you ever did, it would be impossible to find all the best that's out there. So I think that this will provide something for everyone who would participate in that course, because I'm almost certain that at least some of these articles will be articles with which the participants aren't familiar. After that, in May, one of the things I'm most excited about a gentleman named Anthony Alleman, who's a medical doctor, he started out as a cochlear implant surgeon. He had completed a Neurotology residency and fellowship, but then went back and got or completed a fellowship in radiology as well. And he's a diagnostic radiologist now, and he's going to talk about imaging of the auditory system. And the goal will be the audiologists will be able to look at an MRI scan or a CT scan and identify all the relevant structures of the ear and be able to determine if it looks atypical or if it's typical and what that would mean for the management of the child as well.
Jace: [00:28:01] So I think that will be really exciting because that's something that we typically don't get a lot of in the program and it can kind of be intimidating if those kind of images are are put up in a staffing with other professionals and it just looks like a big black and gray bob on the screen. And it's kind of challenging to know what you're looking at. So I'm hopeful that that will be helpful as well. Um, and then in June, we're going to have a series of classes on optimizing the outcomes of children with exceptional needs. And we're going to have Angela Bonino from Vanderbilt University, who does great work in this area. Children with neurocognitive disorders, visual disorders, motor disorders. And she's going to talk about assessment and management for two weeks. And then Schuman He and Holly Teagle are going to finish up that course talking about cochlear nerve deficiency and how that's diagnosed and ideal management for that. So that'll take us through the first half of the year.
Carrie: [00:29:05] Wow, that's a great lineup. And are all of these going to be I think you mentioned Monday nights for the genetics or are they kind of different depending on the speakers?
Jace: [00:29:16] That's a great question. Most likely we'll have Monday night that will feature new courses for audiologists and then many months we will also have a Thursday night course that will be a repeat of a course that's been offered in the past. So like a repeat on middle ear measurements and otoacoustic emission measurements and a repeat on programing cochlear implants as well. So it's going to be a really full calendar. And I don't want to again, I don't want to bore your listeners, but we're going to have the rest of the way. Balance Assessment Management. Violette Lavender at Cincinnati Children's. I just want to say this because I'm excited about the topics and I don't want any of our great instructors to be left out, but I think that will be a really interesting course. Dr Lavender is an expert in that area and also sees patients clinically at Cincinnati Children's. In August, we're going to have a three week course on auditory Neuropathy spectrum disorder, led byThierry Morlet, who has worked his entire career with Chuck Berlin. And Linda Hood just published a two series article in ear and hearing looking at outcomes of 260 children served between 2005 and 2020. He's a subject matter expert in that area, and I think it'll be great. I know a lot of clinicians have a lot of questions about how to best serve children with auditory neuropathy. September, we're going to have a summary of the latest outcomes of some of the biggest studies in audiology. The LOCHI study out of Australia will cover that the outcomes of children with hearing loss study. Elizabeth Walker at the University of Iowa will cover that research out of Melbourne, where they look at outcomes of children who have been implanted before nine months of age with Shani Dettman and then the child development after cochlear implantation study, which was started by John Niparko many years ago.
Jace: [00:31:21] But they have outcomes now for children who are well into their teenage years. And Andrea Warner-Czyz is going to talk about that. Three more months October single sided deafness with Hillary Snapp at the University of Miami, who's an expert in this area, particularly with bone conduction devices and cross devices excuse me. And then Lisa Park, who is an expert in this area as well, particularly with cochlear implants, November, we're going to have beyond the audiogram Ben Hornsby and Hillary Davis of Vanderbilt. We'll talk about fatigue related to childhood hearing loss. Andrea Warner Czyz will be back to talk about social emotional issues, including self-esteem and quality of life and bullying and how to help children in those areas. And then we will have Irina Castellanos, who worked with David Pisoni for years. She's now at Ohio State University. She's a psychologist and a neuro developmental specialist. And she's going to talk about executive function, theory of mind, working memory and sensory integration as well. And then the very last month, we will have Kelly Baroque and an anesthesiologist from Cincinnati Children's, and they're going to talk about sedated ADR assessment and best practices in that area. So if you can't tell, I'm excited about this, I can't wait for it to start. I'm going to take all the courses myself, and I hope it's really beneficial for professionals and even more so, I hope that this information is beneficial ultimately for the children we serve.
Carrie: [00:32:59] Wow. Yeah, that's an incredible lineup and I know many of those presenters. So you definitely have top people who are presenting their research and their clinical expertise coming up. So I'm excited too. I'm going to have to like carve out my Monday night starting in 2024.
Jace: [00:33:23] Well, thanks so much. You know, in the future, we're going to have to get you on as well to talk about everything everyone needs to know about educational audiology and the latest and greatest in that topic area. So I will definitely be getting back. Can touch with you.
Carrie: [00:33:37] Yeah, well, I would be happy to talk about my passion and purpose as well. So thank you for. For that too. But if people are interested in this lineup, can you just share a little bit more about how they can find the lineup and how they can, you know, sign up for these classes?
Jace: [00:34:00] That's yeah, that's a great question. You can go to hearing first.org and there's a professional learning community there and you register as a professional in the professional learning community. And then if you wish, you'll start getting updates or regular correspondence via email from hearing first. And we we are targeting the fall as the point in time where we'll start really promoting these learning experiences and providing more information. So they'll definitely be more to come in the not so distant future, but between now and 2024, we also have some great courses that professionals can take. Now there's one ongoing right now where Nancy Young from the University of Chicago, where they have maybe the largest pediatric cochlear implant program in the country, is talking about medical management of children with hearing loss. And it's been great as well. So you can go there now and get involved with the courses that we have scheduled between now and the end of the year and then there'll be more to come. Once you're registered, you'll get that information in the future and we're going to have a really big marketing effort to to reach out to the pediatric hearing health care community starting in the fall to make people aware of these offerings and the opportunity to get the latest and greatest information at no cost with credits as well.
Carrie: [00:35:26] That is great because I know getting CEUs sometimes and the cost can be a challenge and to be able to really have a focus on that pediatric audiology population is going to be amazing and a great addition to the hearing First Community, Are you guys still going to be targeting like the deaf educators and speech language pathologists and parents as well?
Jace: [00:35:52] Yes, Yes. Without a doubt, there will still be a very concerted effort to have lots of products and cutting edge information for providers. And then, of course, families. We want to be a lifeline for families who are newly diagnosed or children with hearing loss. And then as they progress through the journey up until adult independence. And so that will definitely still be a core focus in the middle of the wheelhouse for for hearing first. And we will continue programs that have been exceptionally successful, like the Starts Here program, which seeks to educate expectant mothers about the importance of hearing and the hearing screening prior to the child. Even being born as well. And we've been able to touch almost a countless number of expectant mothers with that program over the past two years. You can learn more about the Starts Here program and how you might be able to get involved with that at the hearing first.org website as well.
Carrie: [00:36:53] Oh, good. Well, I'm glad we were able to touch base today. And I know you are new to Oberkotter to the hearing first. Um. And being able to get your skills and use them in a different way. I'm sure it's going to continue to grow over there. Hearing first, and I'd be interested to hear what your next round or your next innovation with science and technology and how that continues to evolve too, in your role.
Jace: [00:37:24] Well, let's do this again next year and I'll be able to tell you more.
Carrie: [00:37:28] Okay, We can definitely do that. So. Well, Jace, I just want to say thank you again for being a guest on the EmpowEAR Audiology podcast. And people can get on the hearing first website and get a hold of you if they have any other questions, and then find out about all of the resources and offerings that will be happening starting in August and leading up through 2024.
Jace: [00:37:53] Well, you're very welcome. And Carrie, thank you so much again for the privilege of being on your podcast and for your friendship. It's been an honor, and I've really enjoyed it.
Carrie: [00:38:02] All right. Well, thank you, listeners, for listening to the EmpowEAR Audiology podcast. If you enjoy this, please take a moment and give a five star review that helps other listeners to find the podcast and share it with others. Thank you and have a great day.
Announcer: [00:38:19] This has been a production of the 3C Digital Media Network.
Episode 57: empowEAR Audiology - Dr. Sarah Sydlowski
Announcer: [00:00:00] Welcome to episode 57 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have the honor to have a special guest today on the Ear Audiology podcast, and I have Dr. Sarah Sydlowski and she is the audiologist audiology director of the Hearing Implant Program, the director of Audiology, Innovation and Strategic Partnerships and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio, where her clinical and research interests focus on implantable hearing devices. Optimization of practice efficiency while maintaining strong outcomes and development of innovative clinical delivery models. She earned. She has earned the Cleveland Clinic Distinguished Educator Certificate and is the adjunct faculty at the University of Akron, where she teaches the Graduate Implantable Technologies Course. Dr. Sydlowski completed her clinical doctorate at the University of Louisville, her externship at Mayo Clinic in Arizona, and her PhD at Gallaudet University. Most recently, she completed her executive MBA at the Weatherhead School of Management at Case Western Reserve University, where she was the recipient of the MBA Leadership Award.
Carrie: [00:01:57] Dr. Sydlowski has been a very active and professional organization serving on the American Academy of Audiology Board of Directors as a member at large and President during the 2021 2022 term, as well as on multiple program committees and subcommittees for the National Conference. As a trustee of the AAA Foundation and as Chair of the Governance Audit and Student Academy of Audiology Advisory Committees. She is the past president of the Ohio Academy of Audiology and has served on a task force for the American Cochlear Implant Alliance related to expanding cochlear implant candidacy and was co-chair of the American Cochlear Implant Alliance Program Committee in 2021. Most recently, her interests have focused on developing interdisciplinary relationships to advance the successful identification and management of individuals with hearing loss through. As co-chair of the newly formed Hearing Health Collaborative, which is a think tank of audiologist, otologist and patient advocates charged with developing a blueprint for changing the landscape of hearing health care. She is also principal investigator of a study focused on integration of tablet based hearing screeners in primary care and geriatric medicine practices. So again, I am really excited to have Dr. Sarah Sydlowski i with me today. Thank you for being a guest on the EmpowEAR Audiology podcast.
Sarah: [00:03:29] Oh my gosh. I was so excited to have the invitation. Thanks for having.
Carrie: [00:03:32] Me. Well, I am really excited to have a conversation with you about a couple of topics that I feel passionately about, and I know you do as well. But whenever I have an audiologist on my podcast, I really like to find out how did you even get into the field of audiology? Because I feel everybody has a different story that led them there.
Sarah: [00:03:55] That's very true. You know, mine was kind of a long and meandering path. I always knew that I wanted to work in health care. I knew that I wanted to help people. I was always really good at writing and I loved communication. I thought I wanted to be a journalism major. For a while. I thought that I would be a writer, um, but I wanted to somehow combine these two loves that I have. And for some reason initially I thought that meant that I should be an orthodontist. I come from a family of dentists, and so I originally thought that's what I would do. So I was pre-dental for most of college. And then I have a grandfather who got a cochlear implant when I was in graduate school, and I don't know that his hearing loss directly impacted me, but I think it must have had some role at least. And somehow I stumbled onto audiology and I came to the conclusion that audiology was a fairly small field and that there was more opportunity to have a bigger impact. And so I decided to be an audiologist. And actually when I first started in graduate school, I almost went back to dental school because in my first semester I thought, I don't know if this is for me. It was initially, you know, audiograms and hearing aids and I just wasn't sure. And my program director at the time told me that there Is so much more to audiology, you need to stick it out and find the thing that inspires you and challenges you. And there are so many things that you can do. You don't have to do any one thing. And that was really true. And for me, cochlear implants was the love that I found in audiology.
Carrie: [00:05:31] Love that story. How just something in your family kind of clicked and got you on another path. And obviously you've made a huge impact in the field of audiology and you continue to do so with your passion and what you love to do. So thank you for all that you've done. I am excited to really dig into a couple of topics today with you one being cochlear implants, which we both share a passion for me personally and you professionally. And then to dig in a little bit more with the Hearing Health Collaborative and the impact that is making nationally and then internationally as well. But just to kind of get started with cochlear implants, and I know most of our audience today probably knows what a cochlear implant is, but can you just kind of give a quick overview of what a cochlear implant is just in case somebody wants to know or have a little background about that?
Sarah: [00:06:34] Sure. So my simple explanation of a cochlear implant is that for hearing aids, we're assuming that the ear is still working the way that it typically does. And if we can just make sounds louder, then they're more accessible and can be passed up to the brain the way that we would expect. But sometimes it's not enough just to make sounds louder. We also need to make them a bit clearer. And so a cochlear implant essentially takes the place of the sensory cells in the inner ear that aren't working the way that they used to. And we directly stimulate the hearing nerve and send the signal up to the brain.
Carrie: [00:07:10] Good. Thank you for having that quick overview. And with cochlear implants, they've been around for quite a few years, really kind of starting out with that FDA approval back in the 1980s and then kind of early 90s for kids. But there's been quite a few changes over the years and technology technique techniques, candidacies and outcomes. So can you kind of maybe give an overview of how this candidacy has changed over the years?
Sarah: [00:07:42] Sure. Absolutely. I think it's so exciting actually, how much cochlear implants have changed in my career. It's one of the reasons I love it is that year to year you have to keep learning and doing things differently because it's constantly evolving. Initially, cochlear implants were a last resort. They were saved for when a hearing aid could not help at all and somebody was really struggling and just couldn't function with the hearing aid even. And today we know that the sooner that we offer a cochlear implant, the sooner someone has access to that technology, the better. So today we don't look at the overall hearing as much as we look at each ear individually to try to make sure that each year is functioning the best it possibly can. We also tend to use words more than sentences, So we realize that when you have context, sure, you can maybe figure out what's being said, but you're using so much cognitive energy that you might be really tired and exhausted by the end of the day. And so it's more realistic to look at individual words where you're not having to draw on those cognitive resources and can hear the individual sounds. And then the last thing I'd say is that we don't have concerns like we used to have about when someone has residual hearing. So even if they have natural hearing, that's maybe within the normal range or a mild hearing loss, particularly in the low pitches, will still offer an implant because we know not only can we preserve it and not necessarily lose it, but it can add to the quality and the overall outcomes that the patient has, especially in situations like groups and background noise or enjoying music.
Carrie: [00:09:28] Yeah. So I feel like, um, you mentioned earlier that early cochlear implants were a last resort and with a lot of the changes in the candidacy and having more residual hearing and kind of measuring different ears, that has changed a lot. But I feel like maybe hearing health care professionals in general who are not working directly with the Cochlear Implant Center, they may not know that there been changes in that. So can you maybe update a little bit about some of those next steps that if somebody was working in a clinic that they may be looking for?
Sarah: [00:10:13] So I'll give you a really simple and easy way to know if you should send someone for a cochlear implant evaluation. And this is what we use at the Cleveland Clinic, and that is if someone has an ear, any one ear, that's understanding less than 60% of words, we'd like to see them. And we did a project probably seven years ago now because we had seen that the candidacy criteria were changing. We knew we were offering implants to many more people, but we weren't seeing more people coming into our practice and we couldn't figure out why. And so we went through a program that we have here at the clinic for our continuous improvement department. We use some structured problem solving to ask why that was happening. And one of the things that we learned is that people felt like they were sending someone for a cochlear implant, not a cochlear implant evaluation. And those are very different. So I would want referring providers, audiologists in the community who don't work with cochlear implants to know that when you tell someone they should consider a cochlear implant, it doesn't mean that they absolutely have to get one.
Sarah: [00:11:25] I know that can feel nerve wracking to make that recommendation often, but I look at it more like a hearing aid benefit appointment, so we're able to measure how much is this individual understanding with their hearing aids? What's the best hearing aids can do for them? And if the answer is it's not as much as what a cochlear implant can do, then we should talk about a cochlear implant. But oftentimes what we learn in that appointment is that there's programing adjustments that could happen for their hearing aid, or maybe they need to be using assistive listening devices. It's really an opportunity just to better understand what are they experiencing right now, what's the best that they can do? And maybe cochlear implants are part of that conversation. So, you know, I just hope that people aren't nervous to send someone. And I think it's important to know you're not recommending the surgery you're recommending. Let's look at all your options and making sure you're doing the best you can.
Carrie: [00:12:22] Yeah. And I'm sure from a patient perspective, I know it's a scary thing to do. And but then in hindsight, like getting that extra information and being able to process it may help you later make a decision for that is better for your hearing health care as well.
Sarah: [00:12:42] Yes, absolutely. Absolutely.
Carrie: [00:12:45] Are there other barriers that you have seen as a cochlear implant audiologist and being at the Cleveland Clinic of whether it's from the audiologist, not referring or patients not coming as far as a cochlear implant? Just even the evaluation goes?
Sarah: [00:13:05] That's a great question. I don't think that we really know all of the reasons yet. I do think that referring providers, whether that's an audiologist or an ENT or even a primary care provider, it's really important that they feel confident and comfortable making that recommendation because I think patients look to you, you know, to provide the best recommendation possible and they trust what you offer. I think it's typical and normal for people to want to dig to the bottom of their toolkit to offer whatever they can. And so we see that happen a lot, that we'll have patients come in who have tried 5 or 6 different sets of hearing aids. And the thing about that that's really interesting is often from patients I hear the comment, why didn't my audiologist tell me about this sooner? And they're frustrated and they've even lost some trust. And so I think that being open and candid about having these conversations early actually helps to build your patients’ confidence in working with you, knowing that you have their best interests at heart. So definitely that's an important piece of it. I also think there are a lot of misconceptions about the surgery itself. I've heard people say it's brain surgery. I've heard people believe you have to stay in the hospital, you know, for a number of days.
Sarah: [00:14:28] This is an outpatient procedure. It's not actually anywhere close to the brain as far as Otology surgeries go. It's fairly straightforward. We see very low complications. There are always risks to surgery, of course, but I think that there are some misconceptions about how invasive the procedure really is or what the recovery is like. Certainly, there's some risk for dizziness, sometimes an increase in tinnitus, sometimes a metallic taste. There's a few other things that patients should be aware of, but for the most part, we see these as pretty low occurrences. So that probably factors in as well. And then I think what you mentioned, which is just a fear of the unknown. Cochlear implants are hard to talk about because you can't let someone try one and see, Oh, is it better? And so it's really a leap of faith and trusting in your providers. When we say we're pretty confident that you're going to do better with this device than you can with the hearing aid, but there's no going back. And so I think that it that can be a hard a hard decision to make and people often have to feel like. There at the end of their rope before they're ready to let go.
Carrie: [00:15:45] Yeah, no, I can relate well to that. I think one of my the best things that helped me was being able to talk to other cochlear implant recipients as well who have gone through the process and they were able to share some of those similar concerns. But then you see that they're they most of the time people say, I wish I would have done this sooner rather than waited. So that kind of been the the answer that I get most of the time.
Sarah: [00:16:13] That's I'm so glad you said that, because that is the most common thing I hear is why didn't I do this sooner? And actually, one of my favorite parts of my job is that when I see patients for cochlear implant evaluation, they're usually thinking there's nothing else I can do. I've tried everything and I feel like I have this little secret, like I have this great answer and I know what your experience is going to be like in six months from now and your life is going to open up. And so it's just such an honor really to be able to provide that for the patients I work with.
Carrie: [00:16:50] Yeah, just getting them to that that appointment so they can have their eyes opened or at least learn more about what their options are and be able to make a decision at some point. What is the, I guess, percentage of individuals who may qualify for a cochlear implant but have not taken that step?
Sarah: [00:17:13] A great question. So I know that the number is low, but I was shocked to read a recent article that was published, I think just in the last year by Ashley Nasiri, who was up at Mayo at the time, and some of her colleagues, and they looked at very current numbers for cochlear implant candidates as well as who could benefit but hadn't proceeded. And they estimated that for those who meet, the more expanded criteria, only 2% of people who could benefit from an implant have one, which means 98% of people who could be doing so much better with their hearing and enjoying life and being able to do things they care about don't have one. So that's why I'm so committed to trying to work hard to spread the message that many, many more people could be candidates and they just need to get to a cochlear implant program.
Carrie: [00:18:10] Wow. To think that 98% have not taken or even explored it yet is quite alarming. I guess.
Sarah: [00:18:20] It's unbelievable. Like how many, you know, medical interventions do we have where 98% of people who could benefit from it don't have it, don't actually know the answer to that question, But I can't imagine it's many. And it just seems amazing that we have such wonderful technology. And then to not use it is such a shame.
Carrie: [00:18:40] Yeah. So we definitely have a lot of work to do on both sides. I know you had just was back in, I think, 2022 September, October of 2022. You had an article that you authored in Audiology today titled Cochlear Implantation The Most Misunderstood and under Recommended Treatment Option in Audiology. And I think we kind of covered that. But do you want to maybe summarize that answer? Because it it definitely the most misunderstood and underutilized.
Sarah: [00:19:18] But I hope that title would catch people's attention. Yeah. So basically what I wrote about are some of the things that we talked about today too, which is the idea that we're looking at individual ears and residual hearing is okay. And there are many people that you probably wouldn't look at and think of them as a cochlear implant candidate. Most of us have in our mind the idea that someone has to have severe to profound hearing in both ears, and then they could be a cochlear implant candidate. But most of my practice anymore, that's actually a pretty small percentage of who we see. I would say the majority of our patients now have asymmetric hearing loss where one ear may very well be outside of the typical range for a cochlear implant. Many of our candidates now have completely normal hearing and at least one ear. And the other thing that I wrote about in the article is that oftentimes, very often, actually, people think of who is a candidate for a cochlear implant based on if they meet FDA labeling or if their insurance would cover it. And the reality is that clinically, we are implanting many individuals who exceed FDA labeling. And there's a difference between candidacy and coverage, and we use that term interchangeably.
Sarah: [00:20:44] And I think it's very dangerous and harmful, actually. So we've made a really big effort at our program to first say, is this individual a candidate? So would they would they benefit from a cochlear implant? Could their hearing be improved by having a cochlear implant, yes or no? And then we'll answer the question, will someone pay for it? Which is a totally separate issue. As you know, cochlear implants are covered by most insurances, but oftentimes their policies are still fairly outdated and they tend to list those older criteria. But oftentimes we're able to go through appeals and we're able to convince them that based on this particular circumstance, the patient would benefit. And so I think being able to deal with those two issues separately is really important because we've seen many patients in the past and from other programs who are told you're not a candidate for a cochlear implant, but really they are a candidate. They could benefit. Either their insurance won't pay for it or the clinician who saw them didn't, or they knew that they didn't meet FDA labeling or Medicare criteria, which is a totally different issue.
Carrie: [00:21:55] Yeah, no, that's good to kind of clarify that difference between candidacy and coverage. And I think you're right, a lot of people get confused. They just say, I'm not a candidate. But in reality, they are. They just may not have been approved or they didn't go through the right channels then.
Sarah: [00:22:14] Right And I think it's important for patients to know the difference because we need we need them to be advocating to if they're telling people, oh, wasn't a candidate, that's very different than I am a candidate. And can you believe my insurance won't cover it? This is ridiculous. And I think that we need, you know, people to have that frustration and be able to share their stories so that we can continue to move the needle.
Carrie: [00:22:40] Yeah. Which I think is a great segue . In that article that you wrote, you presented a case scenario and it is kind of the I don't want to say untraditional, but like the a case scenario that maybe people would not have referred for. So I thought just for our listeners, it might be beneficial if I read your case scenario and then you kind of walk through for our listeners what those next steps might be so that we can kind of dispel some of these myths of not referring along the way for a candidate that they might not have thought would have been worthy of referring, I guess. So your scenario talks about a 61 year old female that has adult onset progressive sensorineural hearing loss attributed to an auto immune disease. Her audiogram, which you can't see right now. But if you just want to picture it as a listener, suggest a moderately severe sensorineural hearing loss from 750 to 8000Hz with poor word recognition ability. She wears hearing aids in both ears, but reports that she is increasingly frustrated and has difficulty in a variety of situations. She's anxious and groups and crowds and is withdrawing from public speaking engagements that have always been a key aspect of her work because she feels uncertain fielding questions from the crowd. So if someone came in to a practice with this kind of setup, what would be the next steps for digging deeper?
Sarah: [00:24:22] Yeah, a great question. So I think an important question that we don't ask and answer often enough in a typical audiology appointment is how much are your hearing aids helping you? So we program the hearing aids. Some audiologist is programmed to first fit and may not do objective testing. There's lots of conversation about how important real ear measures are. And I of course 100% agree with that. But it's important to remember that real ear measures are really just showing us the output of the hearing aid and what the hearing aid should be able to provide as far as audibility. But I believe we need to take it one step further on a regular basis and do aided speech recognition testing with all of our hearing aid recipients. We tend to think of that as part of a cochlear implant evaluation, and it is it's an important part. But don't think that we should be waiting until we think someone's an implant candidate to do that testing. So for this patient in particular, she didn't have, I don't think any thresholds that were worse than 65 DB No.
Carrie: [00:25:31] 75 at 8000 for the right ear. But that was it.
Sarah: [00:25:35] That was it. Yeah. So most people, you know, especially with those good low frequencies up in the mild range at 250 and 500, most people would look at that and say it's a hearing aid patient. And she was. But she was also still struggling with those hearing aids. My recommendation would be that any audiologist, every audiologist, even if you don't work with cochlear implants, should put that patient in the booth and measure their ability to understand spoken words with those hearing aids on programmed and verified. And if the word understanding is worse than 50%. Consider them for a potential cochlear implant.
Carrie: [00:26:21] Yeah. And it looks like for this case, when they put her in the booth, the right ear best aided was 40% for words and the left ear was 36%. But can you expand a little bit more on maybe sentences too? You've touched on it earlier, but she had 72% in one ear, 74% in the other ear in quiet. And that obviously went down in noise. But people might look at the sentences and be like, wow, she's getting she's pretty good.
Carrie: [00:26:52] Yes, that's exactly right.
Sarah: [00:26:53] Most people would look at sentences and, you know, in a in a day to day conversation, especially if she's in quiet and especially if she has lip reading, it might appear that she's doing reasonably well. But what we don't measure well, we don't necessarily even ask about well, is how hard it is for her to do that. And so the listening effort that she's putting in and the cognitive resources she's having to dedicate to getting that 72% is probably pretty significant, especially when you look at the fact that if you do take context away and now you're just hearing individual words, her scores drop almost in half. And so that alone can tell you that, you know, she's relying very heavily on contextual information. So if we look at just that word understanding on its own and it's, you know, 30, 40%, that means that there are many sounds of speech that she's not hearing, that a hearing aid simply can't provide, that a cochlear implant could. And indeed, that's what we saw when we moved her forward to a cochlear implant.
Carrie: [00:28:00] Right.
Carrie: [00:28:01] And then you went even further with her and talked about more of those subjective experiences too. So can you share just a little bit more maybe for audiologists and clinics of different tools that they might want to incorporate to get that information?
Sarah: [00:28:23] Definitely. I think that's probably also a fairly overlooked aspect. Most of us ask informally, you know, how do you feel like you're doing in different situations, But having a more standardized questionnaire that patients can complete, I think gives really great information about what they're experiencing and what they're perceiving in a way that's measurable and something that you can compare, you know, pre and post when you've made some changes. So for our patient, we use well, really for all of our cochlear implant evaluations, we use the hearing handicap inventory for adults or the elderly, depending on the age of the individual, a tinnitus handicap inventory, dizziness, handicap inventory. And then we also usually use the SSQ, the speech Spatial Qualities questionnaire. And the combination of those measures give us a good sense of how the individual is perceiving they're doing in their day to day life. There are a lot of other measures, of course, that can be very helpful. I think it's important to consider, number one, what questions are you trying to answer? And number two, when are you using those questionnaires? Is it before and after an intervention? Is it something else? But for us, you know, we were able to see that her hearing handicap was 100, which is as high as it can go. And so that was very helpful in understanding really the impact the hearing loss was having, even though I would guess that you'd look at that audiogram that you described so well and you'd probably wouldn't think that was a 100 HHI score. So it was important to have that additional information about her experience.
Carrie: [00:30:05] And with all of this information, she. You talked a lot about earlier, those looking at your specific, you know, the ears differently and then that residual hearing and taking all of that together, what was the next step in almost, I guess I'll say, the counseling process of getting her to, um, maybe think about a cochlear implant.
Sarah: [00:30:35] A great question. Oftentimes, if someone makes it to my office, they already are struggling enough that they want to know about any options that are available to them. So remember, there wasn't a whole lot of counseling that really needed to happen. I actually can distinctly remember, she said. I don't care if you want to put reindeer antlers on my head, I will do it because I want to hear better. Wow. So that in and of itself was really impactful. Sometimes I think people come in and they're skeptical, in part because they've already been told in the past, you know, let's get a new hearing aid that will help you. And oftentimes it doesn't help as much as they want it to be able to help. And it's not because their audiologist hasn't done the best job that they could. It's not because it's not good technology. It's just because their hearing has exceeded the capability of acoustic technology. And so it's important that they're able to move forward. So sometimes the counseling is overcoming their past experiences and helping them understand why this time is going to be different. And that goes back to what I mentioned earlier. You know, sometimes when audiologists have tried three or 4 or 5 sets of hearing aids, it actually makes it even harder for patients to move forward to the next step because they've been burned so many times. And so they are more skeptical and they are less trusting. And so I think the patients who get to me sooner who get to have the conversation earlier, it's also easier.
Carrie: [00:32:17] And just to have a kind of wrap up of the case scenario, what was so she went through with the cochlear implant and what happened after that.
Sarah: [00:32:29] So she did great. That's that's a happy ending. But the biggest improvement we saw was, in her word, understanding ability, which is exactly what we expected, that in those situations where context goes away. Her word scores doubled. She was implanted in an ear that had 36% word recognition, and it went up to 84%. And then the great thing is that she still wore a hearing aid on the other side. And so she had the benefit of acoustic hearing there and put together her word understanding was 96%. Take it. A whole lot better than that. Noise, of course, was still difficult, which it is for all of us, especially when you have a hearing loss with the cochlear implant by itself, she was able to understand 46% in noise. But with the addition of the cochlear implant, which she had both cochlear implant and hearing aid together, her understanding was 82%, which before the implant she was only getting 26% in noise. So that was a huge, huge improvement.
Carrie: [00:33:35] And did she do any kind of like aural rehab or any training in order to kind of have that bimodal benefit?
Carrie: [00:33:43] Yes.
Sarah: [00:33:43] I'm so glad you asked that question, because I think when we talk about hearing devices, everybody thinks the magic is in the device. And partly it is, but partly it's in that work that the patient puts in. So we push auditory training really heavily here for everybody. But I have also seen this is just anecdotally the patients who have more residual hearing, especially like a single sided deaf patient who has a normal ear and then a cochlear implant ear. They have to be absolutely committed to doing this practice on a regular basis. So I tell everybody at least an hour a day, at least five days a week for at least the first six months after their cochlear implant and probably periodically forever. The more they do, the better outcomes we see for sure.
Carrie: [00:34:30] Yeah, I just wanted people to be aware that, like, the cochlear implant is not a quick fix and there's definitely some work that needs to be done after that too. But I also think it was telling with the questionnaire to post implant like even one month post implant when you re-administered the hearing handicap inventory.
Carrie: [00:34:53] Yes. Yeah.
Sarah: [00:34:54] Her her HHI score dropped from 100 to 22 in 1 month. I think that's also a misconception is that you're absolutely right. Like there's going to be months of work that goes into getting the most out of the implant that you can, but also within a couple of weeks, most people are doing better than where they started. And we measure everybody's hearing and understanding ability one month after we turn the implant on. And, you know, I won't say universally, but the vast majority of people are already demonstrating benefit just one month later. So many people think it'll be months and months before they have any improvement, which is definitely not the case.
Carrie: [00:35:36] Wow. Well, that was just a great way to highlight, I think, all of the different changes that have happened in candidacy and how hearing health care professionals really need to be thinking differently about their patients so that they can get the best benefit that they need, which I wanted to also talk about the other project that you are involved in too, called the Hearing Health Collaborative, because it really looks at hearing health care in a in a different way. Would you be able to share a little bit about your involvement with that? Because I know you were a part of the brainchild of developing it and really starting and getting this group going.
Sarah: [00:36:22] Sure. No thank you for asking. I'm really proud of this group and very honored to be involved and had the privilege of participating from the early days, which is great. So I co-chair the Hearing Health Collaborative with Dr. Matt Carlson, who's a neurologist at Mayo Clinic. And gosh, I've even lost count of how many members we have now because it's been growing so much. But I would estimate we probably have 40 or 50 people from across the country neurotologists, audiologists, representatives from our professional associations, some epidemiologists, primary care providers, geriatricians. It's a wonderful group of of people. And the purpose of the collaborative is really to get everybody at one table, you know, to try to cut through some of the bureaucracy. That can happen when we're looking at individual organizations or individual programs. We all want the same thing. And we know that there's power in all working together. So that's our intention. We've really become a think tank of people who are trying to move forward. How we manage hearing and hearing care in America. What we did that I'm particularly proud of is that we used structured problem solving approaches from continuous improvement. It's called A3 thinking to really understand the root cause of the problem that we're dealing with. And you mentioned earlier, you know, part of my time I spend now in our continuous improvement program, which is something that came to my career just recently, really in the last few years, but it has been so empowering to see the impact that using this methodology can have and the change that it can drive and the really strong results that we can have.
Sarah: [00:38:15] And so I was excited that the group embraced this methodology. I think one of the challenges that we've had with hearing care is we all make a lot of assumptions about why people aren't using hearing devices or why people aren't seeking our services. But to my knowledge, I don't know that anybody's really sat down and and gone through this structured problem solving to get to the root cause. So that's what we're doing with the collaborative. And through that process we identified three key countermeasures that we are focused on. The first is to identify a vital sign for hearing. We believe that there needs to be a number that people can look to, just like we do for blood pressure, knowing 120 over 80 abnormal or vision 2020, we don't have something comparable for hearing. Secondly, we know that we need to have a staging system for hearing loss. Right now, you know, we really focus on that scale of mild, moderate, moderately severe, etc. Number one, that doesn't have much meaning for patients or for referring providers. And number two, it only encompasses audibility, which is one component of hearing, but it doesn't factor in word recognition ability.
Sarah: [00:39:30] Be like we just talked about, which is so important, or quality of life or the perception the patient has. And so we would like to develop a staging system that really provides more understanding and direction to patients and to to referring providers. And then thirdly, we need to have procedural changes so that there's a better standard of care for getting patients into the system. That probably has a couple of components. One being at a primary care level or even a self screening level. You know, how is screening happening? When is it happening? Why is it happening? Should it be happening more? And then when you've been screened, what's the recommendation to get to an audiologist? And then secondly, once you're in the system, how do you get moved along to the right treatment? So like we've been talking about already today, once you have hearing aids, how do you make it to cochlear implants as an example? Or maybe you've tried over-the-counter hearing aids, but you need to move to prescription hearing aids. So we're looking at each of those steps in the path and really taking a long, thoughtful look. And most importantly, like I said, bringing together as many stakeholders as we can so that we can make the change together.
Carrie: [00:40:47] What a great. Start up a collaborative as well. And if individuals want to participate or get involved, are they able to?
Carrie: [00:40:59]
Sarah: [00:41:00] Yes, absolutely. So we have a website you can Google Hearing Health collaborative, adult hearing. I think we'll bring it up. And there's information there about the work that we've done, how you can get involved. We're trying to update it as we continue to make progress because that work is is happening. We're also working on a few publications, so hopefully you'll be able to see those in the literature soon.
Carrie: [00:41:24] Great.
Carrie: [00:41:24] And I know part of that work is also kind of been with the awareness of cochlear implants as well. And there's an actual work group kind of looking at that as some of the challenges that we even talked about today and how to dispel some of those challenges.
Carrie: [00:41:44]
Sarah: [00:41:45] Yes. Yes.. So I think there's so many people who are contributing to this work, and we need as many people as possible who can because there's so much to be done. So there's everything I just described that's more, you know, at a primary care level, going to the public, you know, really specifically about hearing health. And then there's individuals who are more focused on that cochlear implant awareness, which we also need. And yes, I mean, just a lot a lot of work that's happening for sure.
Carrie: [00:42:18] Yeah, it's just wonderful that you have so many different professionals and individuals involved. And like you said, everybody has a seat at the table and everybody's perspective is so important in getting that mission out there to help the general public.
Sarah: [00:42:34] Yes, 100%. We we haven't done it individually yet, but together I think we can.
Carrie: [00:42:40] Great.
Carrie: [00:42:41] Well, Sarah, is there anything that I didn't ask you today that you think I should have asked you that our listeners should know about whether it's the cochlear implant process for adults particularly, or the Hearing Health Collaborative?
Sarah: [00:42:56] No. Gosh, I think you've done a great job of really covering it so well. And I've enjoyed tremendously being able to talk about something that I care about so much. I really appreciate you also being committed to getting the word out that, you know, just don't wait for cochlear implants. It's not a last resort. And please, you know, for your listeners, I hope everyone will contribute to that message of the fact that hearing is vital to health. It's about so much more than just a device. And I think that that's where, you know, the Hearing Health Collaborative and others are working hard to spread that message. But again, we need everybody individually in every venue that you have to share that message.
Carrie: [00:43:39] Yeah, that's a great way to kind of wrap everything together. Dr. Sydlowsk if people listeners want to get Ahold of you, is there a good way for them to reach out to you?
Sarah: [00:43:51] Sure, absolutely. They can email me. My email is s like Sam y d as in David l o w s like Sam at Charlie. Charlie frank.org.
Carrie: [00:44:05] Okay. And I can put that link in the show notes as well, as well as a link to the Hearing Health collaborative too. So if people want to link on that, they would have a direct access to that. But I just want to thank you for taking the time. I know you from the bio. You have a lot of different projects and interest and passion going on, but I wanted to thank you for being an honored guest today on the empowEAR Audiology podcast and highlighting all of your passion and the work that you're doing for hearing health care and policy change and for cochlear implants in general. So thank you for all of that. And I just want to thank all of the listeners for being a part of the empowEAR Audiology Podcast. Be sure to subscribe wherever you listen to ensure that you don't miss an episode, and I would be grateful if you could leave a five star review which helps others who may not have subscribed yet know about the empowEAR Audiology Podcast and if you need transcripts, they are available on the 3C Digital Media Network webpage. So thanks again for being a guest.
Sarah: [00:45:15] My pleasure. Thanks so much again for the invitation.
Announcer: [00:45:18] Has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 57 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Today I have the honor to have a special guest today on the Ear Audiology podcast, and I have Dr. Sarah Sydlowski and she is the audiologist audiology director of the Hearing Implant Program, the director of Audiology, Innovation and Strategic Partnerships and Associate Chief Improvement Officer at the Cleveland Clinic in Cleveland, Ohio, where her clinical and research interests focus on implantable hearing devices. Optimization of practice efficiency while maintaining strong outcomes and development of innovative clinical delivery models. She earned. She has earned the Cleveland Clinic Distinguished Educator Certificate and is the adjunct faculty at the University of Akron, where she teaches the Graduate Implantable Technologies Course. Dr. Sydlowski completed her clinical doctorate at the University of Louisville, her externship at Mayo Clinic in Arizona, and her PhD at Gallaudet University. Most recently, she completed her executive MBA at the Weatherhead School of Management at Case Western Reserve University, where she was the recipient of the MBA Leadership Award.
Carrie: [00:01:57] Dr. Sydlowski has been a very active and professional organization serving on the American Academy of Audiology Board of Directors as a member at large and President during the 2021 2022 term, as well as on multiple program committees and subcommittees for the National Conference. As a trustee of the AAA Foundation and as Chair of the Governance Audit and Student Academy of Audiology Advisory Committees. She is the past president of the Ohio Academy of Audiology and has served on a task force for the American Cochlear Implant Alliance related to expanding cochlear implant candidacy and was co-chair of the American Cochlear Implant Alliance Program Committee in 2021. Most recently, her interests have focused on developing interdisciplinary relationships to advance the successful identification and management of individuals with hearing loss through. As co-chair of the newly formed Hearing Health Collaborative, which is a think tank of audiologist, otologist and patient advocates charged with developing a blueprint for changing the landscape of hearing health care. She is also principal investigator of a study focused on integration of tablet based hearing screeners in primary care and geriatric medicine practices. So again, I am really excited to have Dr. Sarah Sydlowski i with me today. Thank you for being a guest on the EmpowEAR Audiology podcast.
Sarah: [00:03:29] Oh my gosh. I was so excited to have the invitation. Thanks for having.
Carrie: [00:03:32] Me. Well, I am really excited to have a conversation with you about a couple of topics that I feel passionately about, and I know you do as well. But whenever I have an audiologist on my podcast, I really like to find out how did you even get into the field of audiology? Because I feel everybody has a different story that led them there.
Sarah: [00:03:55] That's very true. You know, mine was kind of a long and meandering path. I always knew that I wanted to work in health care. I knew that I wanted to help people. I was always really good at writing and I loved communication. I thought I wanted to be a journalism major. For a while. I thought that I would be a writer, um, but I wanted to somehow combine these two loves that I have. And for some reason initially I thought that meant that I should be an orthodontist. I come from a family of dentists, and so I originally thought that's what I would do. So I was pre-dental for most of college. And then I have a grandfather who got a cochlear implant when I was in graduate school, and I don't know that his hearing loss directly impacted me, but I think it must have had some role at least. And somehow I stumbled onto audiology and I came to the conclusion that audiology was a fairly small field and that there was more opportunity to have a bigger impact. And so I decided to be an audiologist. And actually when I first started in graduate school, I almost went back to dental school because in my first semester I thought, I don't know if this is for me. It was initially, you know, audiograms and hearing aids and I just wasn't sure. And my program director at the time told me that there Is so much more to audiology, you need to stick it out and find the thing that inspires you and challenges you. And there are so many things that you can do. You don't have to do any one thing. And that was really true. And for me, cochlear implants was the love that I found in audiology.
Carrie: [00:05:31] Love that story. How just something in your family kind of clicked and got you on another path. And obviously you've made a huge impact in the field of audiology and you continue to do so with your passion and what you love to do. So thank you for all that you've done. I am excited to really dig into a couple of topics today with you one being cochlear implants, which we both share a passion for me personally and you professionally. And then to dig in a little bit more with the Hearing Health Collaborative and the impact that is making nationally and then internationally as well. But just to kind of get started with cochlear implants, and I know most of our audience today probably knows what a cochlear implant is, but can you just kind of give a quick overview of what a cochlear implant is just in case somebody wants to know or have a little background about that?
Sarah: [00:06:34] Sure. So my simple explanation of a cochlear implant is that for hearing aids, we're assuming that the ear is still working the way that it typically does. And if we can just make sounds louder, then they're more accessible and can be passed up to the brain the way that we would expect. But sometimes it's not enough just to make sounds louder. We also need to make them a bit clearer. And so a cochlear implant essentially takes the place of the sensory cells in the inner ear that aren't working the way that they used to. And we directly stimulate the hearing nerve and send the signal up to the brain.
Carrie: [00:07:10] Good. Thank you for having that quick overview. And with cochlear implants, they've been around for quite a few years, really kind of starting out with that FDA approval back in the 1980s and then kind of early 90s for kids. But there's been quite a few changes over the years and technology technique techniques, candidacies and outcomes. So can you kind of maybe give an overview of how this candidacy has changed over the years?
Sarah: [00:07:42] Sure. Absolutely. I think it's so exciting actually, how much cochlear implants have changed in my career. It's one of the reasons I love it is that year to year you have to keep learning and doing things differently because it's constantly evolving. Initially, cochlear implants were a last resort. They were saved for when a hearing aid could not help at all and somebody was really struggling and just couldn't function with the hearing aid even. And today we know that the sooner that we offer a cochlear implant, the sooner someone has access to that technology, the better. So today we don't look at the overall hearing as much as we look at each ear individually to try to make sure that each year is functioning the best it possibly can. We also tend to use words more than sentences, So we realize that when you have context, sure, you can maybe figure out what's being said, but you're using so much cognitive energy that you might be really tired and exhausted by the end of the day. And so it's more realistic to look at individual words where you're not having to draw on those cognitive resources and can hear the individual sounds. And then the last thing I'd say is that we don't have concerns like we used to have about when someone has residual hearing. So even if they have natural hearing, that's maybe within the normal range or a mild hearing loss, particularly in the low pitches, will still offer an implant because we know not only can we preserve it and not necessarily lose it, but it can add to the quality and the overall outcomes that the patient has, especially in situations like groups and background noise or enjoying music.
Carrie: [00:09:28] Yeah. So I feel like, um, you mentioned earlier that early cochlear implants were a last resort and with a lot of the changes in the candidacy and having more residual hearing and kind of measuring different ears, that has changed a lot. But I feel like maybe hearing health care professionals in general who are not working directly with the Cochlear Implant Center, they may not know that there been changes in that. So can you maybe update a little bit about some of those next steps that if somebody was working in a clinic that they may be looking for?
Sarah: [00:10:13] So I'll give you a really simple and easy way to know if you should send someone for a cochlear implant evaluation. And this is what we use at the Cleveland Clinic, and that is if someone has an ear, any one ear, that's understanding less than 60% of words, we'd like to see them. And we did a project probably seven years ago now because we had seen that the candidacy criteria were changing. We knew we were offering implants to many more people, but we weren't seeing more people coming into our practice and we couldn't figure out why. And so we went through a program that we have here at the clinic for our continuous improvement department. We use some structured problem solving to ask why that was happening. And one of the things that we learned is that people felt like they were sending someone for a cochlear implant, not a cochlear implant evaluation. And those are very different. So I would want referring providers, audiologists in the community who don't work with cochlear implants to know that when you tell someone they should consider a cochlear implant, it doesn't mean that they absolutely have to get one.
Sarah: [00:11:25] I know that can feel nerve wracking to make that recommendation often, but I look at it more like a hearing aid benefit appointment, so we're able to measure how much is this individual understanding with their hearing aids? What's the best hearing aids can do for them? And if the answer is it's not as much as what a cochlear implant can do, then we should talk about a cochlear implant. But oftentimes what we learn in that appointment is that there's programing adjustments that could happen for their hearing aid, or maybe they need to be using assistive listening devices. It's really an opportunity just to better understand what are they experiencing right now, what's the best that they can do? And maybe cochlear implants are part of that conversation. So, you know, I just hope that people aren't nervous to send someone. And I think it's important to know you're not recommending the surgery you're recommending. Let's look at all your options and making sure you're doing the best you can.
Carrie: [00:12:22] Yeah. And I'm sure from a patient perspective, I know it's a scary thing to do. And but then in hindsight, like getting that extra information and being able to process it may help you later make a decision for that is better for your hearing health care as well.
Sarah: [00:12:42] Yes, absolutely. Absolutely.
Carrie: [00:12:45] Are there other barriers that you have seen as a cochlear implant audiologist and being at the Cleveland Clinic of whether it's from the audiologist, not referring or patients not coming as far as a cochlear implant? Just even the evaluation goes?
Sarah: [00:13:05] That's a great question. I don't think that we really know all of the reasons yet. I do think that referring providers, whether that's an audiologist or an ENT or even a primary care provider, it's really important that they feel confident and comfortable making that recommendation because I think patients look to you, you know, to provide the best recommendation possible and they trust what you offer. I think it's typical and normal for people to want to dig to the bottom of their toolkit to offer whatever they can. And so we see that happen a lot, that we'll have patients come in who have tried 5 or 6 different sets of hearing aids. And the thing about that that's really interesting is often from patients I hear the comment, why didn't my audiologist tell me about this sooner? And they're frustrated and they've even lost some trust. And so I think that being open and candid about having these conversations early actually helps to build your patients’ confidence in working with you, knowing that you have their best interests at heart. So definitely that's an important piece of it. I also think there are a lot of misconceptions about the surgery itself. I've heard people say it's brain surgery. I've heard people believe you have to stay in the hospital, you know, for a number of days.
Sarah: [00:14:28] This is an outpatient procedure. It's not actually anywhere close to the brain as far as Otology surgeries go. It's fairly straightforward. We see very low complications. There are always risks to surgery, of course, but I think that there are some misconceptions about how invasive the procedure really is or what the recovery is like. Certainly, there's some risk for dizziness, sometimes an increase in tinnitus, sometimes a metallic taste. There's a few other things that patients should be aware of, but for the most part, we see these as pretty low occurrences. So that probably factors in as well. And then I think what you mentioned, which is just a fear of the unknown. Cochlear implants are hard to talk about because you can't let someone try one and see, Oh, is it better? And so it's really a leap of faith and trusting in your providers. When we say we're pretty confident that you're going to do better with this device than you can with the hearing aid, but there's no going back. And so I think that it that can be a hard a hard decision to make and people often have to feel like. There at the end of their rope before they're ready to let go.
Carrie: [00:15:45] Yeah, no, I can relate well to that. I think one of my the best things that helped me was being able to talk to other cochlear implant recipients as well who have gone through the process and they were able to share some of those similar concerns. But then you see that they're they most of the time people say, I wish I would have done this sooner rather than waited. So that kind of been the the answer that I get most of the time.
Sarah: [00:16:13] That's I'm so glad you said that, because that is the most common thing I hear is why didn't I do this sooner? And actually, one of my favorite parts of my job is that when I see patients for cochlear implant evaluation, they're usually thinking there's nothing else I can do. I've tried everything and I feel like I have this little secret, like I have this great answer and I know what your experience is going to be like in six months from now and your life is going to open up. And so it's just such an honor really to be able to provide that for the patients I work with.
Carrie: [00:16:50] Yeah, just getting them to that that appointment so they can have their eyes opened or at least learn more about what their options are and be able to make a decision at some point. What is the, I guess, percentage of individuals who may qualify for a cochlear implant but have not taken that step?
Sarah: [00:17:13] A great question. So I know that the number is low, but I was shocked to read a recent article that was published, I think just in the last year by Ashley Nasiri, who was up at Mayo at the time, and some of her colleagues, and they looked at very current numbers for cochlear implant candidates as well as who could benefit but hadn't proceeded. And they estimated that for those who meet, the more expanded criteria, only 2% of people who could benefit from an implant have one, which means 98% of people who could be doing so much better with their hearing and enjoying life and being able to do things they care about don't have one. So that's why I'm so committed to trying to work hard to spread the message that many, many more people could be candidates and they just need to get to a cochlear implant program.
Carrie: [00:18:10] Wow. To think that 98% have not taken or even explored it yet is quite alarming. I guess.
Sarah: [00:18:20] It's unbelievable. Like how many, you know, medical interventions do we have where 98% of people who could benefit from it don't have it, don't actually know the answer to that question, But I can't imagine it's many. And it just seems amazing that we have such wonderful technology. And then to not use it is such a shame.
Carrie: [00:18:40] Yeah. So we definitely have a lot of work to do on both sides. I know you had just was back in, I think, 2022 September, October of 2022. You had an article that you authored in Audiology today titled Cochlear Implantation The Most Misunderstood and under Recommended Treatment Option in Audiology. And I think we kind of covered that. But do you want to maybe summarize that answer? Because it it definitely the most misunderstood and underutilized.
Sarah: [00:19:18] But I hope that title would catch people's attention. Yeah. So basically what I wrote about are some of the things that we talked about today too, which is the idea that we're looking at individual ears and residual hearing is okay. And there are many people that you probably wouldn't look at and think of them as a cochlear implant candidate. Most of us have in our mind the idea that someone has to have severe to profound hearing in both ears, and then they could be a cochlear implant candidate. But most of my practice anymore, that's actually a pretty small percentage of who we see. I would say the majority of our patients now have asymmetric hearing loss where one ear may very well be outside of the typical range for a cochlear implant. Many of our candidates now have completely normal hearing and at least one ear. And the other thing that I wrote about in the article is that oftentimes, very often, actually, people think of who is a candidate for a cochlear implant based on if they meet FDA labeling or if their insurance would cover it. And the reality is that clinically, we are implanting many individuals who exceed FDA labeling. And there's a difference between candidacy and coverage, and we use that term interchangeably.
Sarah: [00:20:44] And I think it's very dangerous and harmful, actually. So we've made a really big effort at our program to first say, is this individual a candidate? So would they would they benefit from a cochlear implant? Could their hearing be improved by having a cochlear implant, yes or no? And then we'll answer the question, will someone pay for it? Which is a totally separate issue. As you know, cochlear implants are covered by most insurances, but oftentimes their policies are still fairly outdated and they tend to list those older criteria. But oftentimes we're able to go through appeals and we're able to convince them that based on this particular circumstance, the patient would benefit. And so I think being able to deal with those two issues separately is really important because we've seen many patients in the past and from other programs who are told you're not a candidate for a cochlear implant, but really they are a candidate. They could benefit. Either their insurance won't pay for it or the clinician who saw them didn't, or they knew that they didn't meet FDA labeling or Medicare criteria, which is a totally different issue.
Carrie: [00:21:55] Yeah, no, that's good to kind of clarify that difference between candidacy and coverage. And I think you're right, a lot of people get confused. They just say, I'm not a candidate. But in reality, they are. They just may not have been approved or they didn't go through the right channels then.
Sarah: [00:22:14] Right And I think it's important for patients to know the difference because we need we need them to be advocating to if they're telling people, oh, wasn't a candidate, that's very different than I am a candidate. And can you believe my insurance won't cover it? This is ridiculous. And I think that we need, you know, people to have that frustration and be able to share their stories so that we can continue to move the needle.
Carrie: [00:22:40] Yeah. Which I think is a great segue . In that article that you wrote, you presented a case scenario and it is kind of the I don't want to say untraditional, but like the a case scenario that maybe people would not have referred for. So I thought just for our listeners, it might be beneficial if I read your case scenario and then you kind of walk through for our listeners what those next steps might be so that we can kind of dispel some of these myths of not referring along the way for a candidate that they might not have thought would have been worthy of referring, I guess. So your scenario talks about a 61 year old female that has adult onset progressive sensorineural hearing loss attributed to an auto immune disease. Her audiogram, which you can't see right now. But if you just want to picture it as a listener, suggest a moderately severe sensorineural hearing loss from 750 to 8000Hz with poor word recognition ability. She wears hearing aids in both ears, but reports that she is increasingly frustrated and has difficulty in a variety of situations. She's anxious and groups and crowds and is withdrawing from public speaking engagements that have always been a key aspect of her work because she feels uncertain fielding questions from the crowd. So if someone came in to a practice with this kind of setup, what would be the next steps for digging deeper?
Sarah: [00:24:22] Yeah, a great question. So I think an important question that we don't ask and answer often enough in a typical audiology appointment is how much are your hearing aids helping you? So we program the hearing aids. Some audiologist is programmed to first fit and may not do objective testing. There's lots of conversation about how important real ear measures are. And I of course 100% agree with that. But it's important to remember that real ear measures are really just showing us the output of the hearing aid and what the hearing aid should be able to provide as far as audibility. But I believe we need to take it one step further on a regular basis and do aided speech recognition testing with all of our hearing aid recipients. We tend to think of that as part of a cochlear implant evaluation, and it is it's an important part. But don't think that we should be waiting until we think someone's an implant candidate to do that testing. So for this patient in particular, she didn't have, I don't think any thresholds that were worse than 65 DB No.
Carrie: [00:25:31] 75 at 8000 for the right ear. But that was it.
Sarah: [00:25:35] That was it. Yeah. So most people, you know, especially with those good low frequencies up in the mild range at 250 and 500, most people would look at that and say it's a hearing aid patient. And she was. But she was also still struggling with those hearing aids. My recommendation would be that any audiologist, every audiologist, even if you don't work with cochlear implants, should put that patient in the booth and measure their ability to understand spoken words with those hearing aids on programmed and verified. And if the word understanding is worse than 50%. Consider them for a potential cochlear implant.
Carrie: [00:26:21] Yeah. And it looks like for this case, when they put her in the booth, the right ear best aided was 40% for words and the left ear was 36%. But can you expand a little bit more on maybe sentences too? You've touched on it earlier, but she had 72% in one ear, 74% in the other ear in quiet. And that obviously went down in noise. But people might look at the sentences and be like, wow, she's getting she's pretty good.
Carrie: [00:26:52] Yes, that's exactly right.
Sarah: [00:26:53] Most people would look at sentences and, you know, in a in a day to day conversation, especially if she's in quiet and especially if she has lip reading, it might appear that she's doing reasonably well. But what we don't measure well, we don't necessarily even ask about well, is how hard it is for her to do that. And so the listening effort that she's putting in and the cognitive resources she's having to dedicate to getting that 72% is probably pretty significant, especially when you look at the fact that if you do take context away and now you're just hearing individual words, her scores drop almost in half. And so that alone can tell you that, you know, she's relying very heavily on contextual information. So if we look at just that word understanding on its own and it's, you know, 30, 40%, that means that there are many sounds of speech that she's not hearing, that a hearing aid simply can't provide, that a cochlear implant could. And indeed, that's what we saw when we moved her forward to a cochlear implant.
Carrie: [00:28:00] Right.
Carrie: [00:28:01] And then you went even further with her and talked about more of those subjective experiences too. So can you share just a little bit more maybe for audiologists and clinics of different tools that they might want to incorporate to get that information?
Sarah: [00:28:23] Definitely. I think that's probably also a fairly overlooked aspect. Most of us ask informally, you know, how do you feel like you're doing in different situations, But having a more standardized questionnaire that patients can complete, I think gives really great information about what they're experiencing and what they're perceiving in a way that's measurable and something that you can compare, you know, pre and post when you've made some changes. So for our patient, we use well, really for all of our cochlear implant evaluations, we use the hearing handicap inventory for adults or the elderly, depending on the age of the individual, a tinnitus handicap inventory, dizziness, handicap inventory. And then we also usually use the SSQ, the speech Spatial Qualities questionnaire. And the combination of those measures give us a good sense of how the individual is perceiving they're doing in their day to day life. There are a lot of other measures, of course, that can be very helpful. I think it's important to consider, number one, what questions are you trying to answer? And number two, when are you using those questionnaires? Is it before and after an intervention? Is it something else? But for us, you know, we were able to see that her hearing handicap was 100, which is as high as it can go. And so that was very helpful in understanding really the impact the hearing loss was having, even though I would guess that you'd look at that audiogram that you described so well and you'd probably wouldn't think that was a 100 HHI score. So it was important to have that additional information about her experience.
Carrie: [00:30:05] And with all of this information, she. You talked a lot about earlier, those looking at your specific, you know, the ears differently and then that residual hearing and taking all of that together, what was the next step in almost, I guess I'll say, the counseling process of getting her to, um, maybe think about a cochlear implant.
Sarah: [00:30:35] A great question. Oftentimes, if someone makes it to my office, they already are struggling enough that they want to know about any options that are available to them. So remember, there wasn't a whole lot of counseling that really needed to happen. I actually can distinctly remember, she said. I don't care if you want to put reindeer antlers on my head, I will do it because I want to hear better. Wow. So that in and of itself was really impactful. Sometimes I think people come in and they're skeptical, in part because they've already been told in the past, you know, let's get a new hearing aid that will help you. And oftentimes it doesn't help as much as they want it to be able to help. And it's not because their audiologist hasn't done the best job that they could. It's not because it's not good technology. It's just because their hearing has exceeded the capability of acoustic technology. And so it's important that they're able to move forward. So sometimes the counseling is overcoming their past experiences and helping them understand why this time is going to be different. And that goes back to what I mentioned earlier. You know, sometimes when audiologists have tried three or 4 or 5 sets of hearing aids, it actually makes it even harder for patients to move forward to the next step because they've been burned so many times. And so they are more skeptical and they are less trusting. And so I think the patients who get to me sooner who get to have the conversation earlier, it's also easier.
Carrie: [00:32:17] And just to have a kind of wrap up of the case scenario, what was so she went through with the cochlear implant and what happened after that.
Sarah: [00:32:29] So she did great. That's that's a happy ending. But the biggest improvement we saw was, in her word, understanding ability, which is exactly what we expected, that in those situations where context goes away. Her word scores doubled. She was implanted in an ear that had 36% word recognition, and it went up to 84%. And then the great thing is that she still wore a hearing aid on the other side. And so she had the benefit of acoustic hearing there and put together her word understanding was 96%. Take it. A whole lot better than that. Noise, of course, was still difficult, which it is for all of us, especially when you have a hearing loss with the cochlear implant by itself, she was able to understand 46% in noise. But with the addition of the cochlear implant, which she had both cochlear implant and hearing aid together, her understanding was 82%, which before the implant she was only getting 26% in noise. So that was a huge, huge improvement.
Carrie: [00:33:35] And did she do any kind of like aural rehab or any training in order to kind of have that bimodal benefit?
Carrie: [00:33:43] Yes.
Sarah: [00:33:43] I'm so glad you asked that question, because I think when we talk about hearing devices, everybody thinks the magic is in the device. And partly it is, but partly it's in that work that the patient puts in. So we push auditory training really heavily here for everybody. But I have also seen this is just anecdotally the patients who have more residual hearing, especially like a single sided deaf patient who has a normal ear and then a cochlear implant ear. They have to be absolutely committed to doing this practice on a regular basis. So I tell everybody at least an hour a day, at least five days a week for at least the first six months after their cochlear implant and probably periodically forever. The more they do, the better outcomes we see for sure.
Carrie: [00:34:30] Yeah, I just wanted people to be aware that, like, the cochlear implant is not a quick fix and there's definitely some work that needs to be done after that too. But I also think it was telling with the questionnaire to post implant like even one month post implant when you re-administered the hearing handicap inventory.
Carrie: [00:34:53] Yes. Yeah.
Sarah: [00:34:54] Her her HHI score dropped from 100 to 22 in 1 month. I think that's also a misconception is that you're absolutely right. Like there's going to be months of work that goes into getting the most out of the implant that you can, but also within a couple of weeks, most people are doing better than where they started. And we measure everybody's hearing and understanding ability one month after we turn the implant on. And, you know, I won't say universally, but the vast majority of people are already demonstrating benefit just one month later. So many people think it'll be months and months before they have any improvement, which is definitely not the case.
Carrie: [00:35:36] Wow. Well, that was just a great way to highlight, I think, all of the different changes that have happened in candidacy and how hearing health care professionals really need to be thinking differently about their patients so that they can get the best benefit that they need, which I wanted to also talk about the other project that you are involved in too, called the Hearing Health Collaborative, because it really looks at hearing health care in a in a different way. Would you be able to share a little bit about your involvement with that? Because I know you were a part of the brainchild of developing it and really starting and getting this group going.
Sarah: [00:36:22] Sure. No thank you for asking. I'm really proud of this group and very honored to be involved and had the privilege of participating from the early days, which is great. So I co-chair the Hearing Health Collaborative with Dr. Matt Carlson, who's a neurologist at Mayo Clinic. And gosh, I've even lost count of how many members we have now because it's been growing so much. But I would estimate we probably have 40 or 50 people from across the country neurotologists, audiologists, representatives from our professional associations, some epidemiologists, primary care providers, geriatricians. It's a wonderful group of of people. And the purpose of the collaborative is really to get everybody at one table, you know, to try to cut through some of the bureaucracy. That can happen when we're looking at individual organizations or individual programs. We all want the same thing. And we know that there's power in all working together. So that's our intention. We've really become a think tank of people who are trying to move forward. How we manage hearing and hearing care in America. What we did that I'm particularly proud of is that we used structured problem solving approaches from continuous improvement. It's called A3 thinking to really understand the root cause of the problem that we're dealing with. And you mentioned earlier, you know, part of my time I spend now in our continuous improvement program, which is something that came to my career just recently, really in the last few years, but it has been so empowering to see the impact that using this methodology can have and the change that it can drive and the really strong results that we can have.
Sarah: [00:38:15] And so I was excited that the group embraced this methodology. I think one of the challenges that we've had with hearing care is we all make a lot of assumptions about why people aren't using hearing devices or why people aren't seeking our services. But to my knowledge, I don't know that anybody's really sat down and and gone through this structured problem solving to get to the root cause. So that's what we're doing with the collaborative. And through that process we identified three key countermeasures that we are focused on. The first is to identify a vital sign for hearing. We believe that there needs to be a number that people can look to, just like we do for blood pressure, knowing 120 over 80 abnormal or vision 2020, we don't have something comparable for hearing. Secondly, we know that we need to have a staging system for hearing loss. Right now, you know, we really focus on that scale of mild, moderate, moderately severe, etc. Number one, that doesn't have much meaning for patients or for referring providers. And number two, it only encompasses audibility, which is one component of hearing, but it doesn't factor in word recognition ability.
Sarah: [00:39:30] Be like we just talked about, which is so important, or quality of life or the perception the patient has. And so we would like to develop a staging system that really provides more understanding and direction to patients and to to referring providers. And then thirdly, we need to have procedural changes so that there's a better standard of care for getting patients into the system. That probably has a couple of components. One being at a primary care level or even a self screening level. You know, how is screening happening? When is it happening? Why is it happening? Should it be happening more? And then when you've been screened, what's the recommendation to get to an audiologist? And then secondly, once you're in the system, how do you get moved along to the right treatment? So like we've been talking about already today, once you have hearing aids, how do you make it to cochlear implants as an example? Or maybe you've tried over-the-counter hearing aids, but you need to move to prescription hearing aids. So we're looking at each of those steps in the path and really taking a long, thoughtful look. And most importantly, like I said, bringing together as many stakeholders as we can so that we can make the change together.
Carrie: [00:40:47] What a great. Start up a collaborative as well. And if individuals want to participate or get involved, are they able to?
Carrie: [00:40:59]
Sarah: [00:41:00] Yes, absolutely. So we have a website you can Google Hearing Health collaborative, adult hearing. I think we'll bring it up. And there's information there about the work that we've done, how you can get involved. We're trying to update it as we continue to make progress because that work is is happening. We're also working on a few publications, so hopefully you'll be able to see those in the literature soon.
Carrie: [00:41:24] Great.
Carrie: [00:41:24] And I know part of that work is also kind of been with the awareness of cochlear implants as well. And there's an actual work group kind of looking at that as some of the challenges that we even talked about today and how to dispel some of those challenges.
Carrie: [00:41:44]
Sarah: [00:41:45] Yes. Yes.. So I think there's so many people who are contributing to this work, and we need as many people as possible who can because there's so much to be done. So there's everything I just described that's more, you know, at a primary care level, going to the public, you know, really specifically about hearing health. And then there's individuals who are more focused on that cochlear implant awareness, which we also need. And yes, I mean, just a lot a lot of work that's happening for sure.
Carrie: [00:42:18] Yeah, it's just wonderful that you have so many different professionals and individuals involved. And like you said, everybody has a seat at the table and everybody's perspective is so important in getting that mission out there to help the general public.
Sarah: [00:42:34] Yes, 100%. We we haven't done it individually yet, but together I think we can.
Carrie: [00:42:40] Great.
Carrie: [00:42:41] Well, Sarah, is there anything that I didn't ask you today that you think I should have asked you that our listeners should know about whether it's the cochlear implant process for adults particularly, or the Hearing Health Collaborative?
Sarah: [00:42:56] No. Gosh, I think you've done a great job of really covering it so well. And I've enjoyed tremendously being able to talk about something that I care about so much. I really appreciate you also being committed to getting the word out that, you know, just don't wait for cochlear implants. It's not a last resort. And please, you know, for your listeners, I hope everyone will contribute to that message of the fact that hearing is vital to health. It's about so much more than just a device. And I think that that's where, you know, the Hearing Health Collaborative and others are working hard to spread that message. But again, we need everybody individually in every venue that you have to share that message.
Carrie: [00:43:39] Yeah, that's a great way to kind of wrap everything together. Dr. Sydlowsk if people listeners want to get Ahold of you, is there a good way for them to reach out to you?
Sarah: [00:43:51] Sure, absolutely. They can email me. My email is s like Sam y d as in David l o w s like Sam at Charlie. Charlie frank.org.
Carrie: [00:44:05] Okay. And I can put that link in the show notes as well, as well as a link to the Hearing Health collaborative too. So if people want to link on that, they would have a direct access to that. But I just want to thank you for taking the time. I know you from the bio. You have a lot of different projects and interest and passion going on, but I wanted to thank you for being an honored guest today on the empowEAR Audiology podcast and highlighting all of your passion and the work that you're doing for hearing health care and policy change and for cochlear implants in general. So thank you for all of that. And I just want to thank all of the listeners for being a part of the empowEAR Audiology Podcast. Be sure to subscribe wherever you listen to ensure that you don't miss an episode, and I would be grateful if you could leave a five star review which helps others who may not have subscribed yet know about the empowEAR Audiology Podcast and if you need transcripts, they are available on the 3C Digital Media Network webpage. So thanks again for being a guest.
Sarah: [00:45:15] My pleasure. Thanks so much again for the invitation.
Announcer: [00:45:18] Has been a production of the 3C Digital Media Network.
Episode 56: empowEAR Audiology - Dr. Lindsey Tubaugh
Announcer: [00:00:00] Welcome to episode 56 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. I am really excited today to have a special guest with me. I have Dr. Lindsey Tubaugh, and I know I said that wrong. Tubaugh Thank you. Um, with me today and she has been a practicing audiologist for over 20 years, working with both adults and children in a wide variety of clinical settings. She has co-founded the Little Heroes Pediatric Hearing clinic, where she specializes in tinnitus and sound sensitivity disorders, including loudness, hyperacusis, Annoyance Hyperacusis, Misophonia and Fear Hyperacusis and Phonophobia, which we're going to talk about today. Her passion is helping patients understand that tinnitus and sound sensitivities, while sometimes debilitating, can be managed with careful testing and treatment, patients can live their best lives. She has become a Rapid Transformational therapist to utilize hypnosis and further assist patients with tinnitus and sound sensitivity struggles. She created the Sound Immunity Program, which is an online coaching program for those struggling with sound sensitivities. So, Lindsey, thank you. Welcome to the EmpowEAR Podcast. Oh, thank.
Lindsey: [00:02:03] You so much for having me. I'm so excited. I love talking about this. So I'm I can't wait to just dig in. Yes.
Carrie: [00:02:12] And that's exactly what we're going to do today. But before we dig into that, every guest that I have that is an audiologist because it's such a unique and fun field. I always like to find out, how did you actually get into audiology? Do you have a story behind it?
Lindsey: [00:02:28] You know, I feel like my story is very similar to others stories in that when I was in college, I was going into special education and then I learned more about speech language pathology. So I switched majors to to speech language pathology. And as an undergrad, you take both audiology courses and speech pathology courses. And I just loved the audiology courses so much more. And so it just kind of morphed. And then, you know, at the end I was like, I'm not I think I would have been happy being a speech pathologist, but audiologist audiology just called to me. So that's how I ended up here and I couldn't be happier.
Carrie: [00:03:08] Well, good. I know. I feel like a lot of people have that pathway too. Yeah. Yes. So can you just share a little bit, too, about your professional background? Because I know that you have co-founded Little Heroes, but where did you I know you started out somewhere before that.
Lindsey: [00:03:27] Yeah. So I started out, um, way back when you used to get a master's degree. That's what. That's me, too. And right after I got my master's degree, I got hired on in Iowa to for private practice. And so I ran two offices in southeast Iowa, mostly for adults. We did get an occasional child here and there, but it really was mostly an adult private practice dispensing clinic. And I worked there in addition to some ENT work PRN, um, here and there for about ten years. I did that before moving to Utah. And I.
Lindsey: [00:04:14] Really want.
Lindsey: [00:04:15] To see. Um, so I really wanted to find something that fit my personality a little bit better. So a job came open in Salt Lake City and for a newborn hearing screening program. That needed to be needed, an audiologist, you know, to do the testing and the follow up. And so I interviewed for that position and I got that position and I worked doing that for about three years before transferring to the children's hospital here in Salt Lake City. And I learned so much about pediatric audiology and met just the most amazing people when I worked at the at the pediatric hospital here. And I really loved it. I, I moved into a management position over at the audiology Department at the hospital. And I was doing that for about three and a half years and then realized that I really missed patients. I really missed missed patient care and a lot of the things that I was interested in, like misophonia, um, weren't things that were very conducive to, to, to a hospital type setting. And so one of my best friends and I decided to open our own practice and specialize in these things we do any the only thing we don't do in our pediatric hearing clinic in Layton, Utah, is vestibular testing. But otherwise we are a full clinic offering all services to pediatrics. We also see adults for our specialties, which is auditory processing disorders for Dr. JJ Wicker and then sound sensitivities and tinnitus for myself.
Carrie: [00:05:59] Oh wow, that sounds like an amazing way to kind of get out of a management position, but then to be able to use like the skills and your passion in a different way.
Lindsey: [00:06:10] Exactly. Exactly. Yeah.
Carrie: [00:06:13] Well, um, someday I would love to come visit you guys. Oh, we'd love to have you. Yes, But anyways, I know I was so excited. Dr. Gail Whitelaw had recommended that I reach out to you because she's like, she has so much knowledge in the area of Misophonia. And so just in the setting that I'm in and educational audiology, I've run into a couple of students that definitely have been diagnosed or kind of have the characteristics of Misophonia. So I thought this would be a great topic for the EmpowerEAR Audiology podcast because we don't talk about it enough and I would love to have our listeners have a little bit more information. So I think the first question is I think people pronounce this in different ways, right? So the correct way.
Lindsey: [00:07:09] Misophonia Okay. So this has this is actually a bigger question than I think most people even realize because some people say misophonia, some people say Misophonia. And to me, I don't really care how they pronounce it or I don't. I say, Misophonia, Um, but you'll hear it both ways and it's kind of like with tinnitus. You'll hear some people say tinnitus and some people say tinnitus. And people have different opinions on that. But the bigger question to me is, is should we be referring to this as misophonia or should we be referring to this as annoyance hyperacusis And this is something that I never even knew was a thing until I went to, um, Iowa to their tinnitus. Every year they have a tinnitus conference and that's where they talk about how some people just get really, really upset by the term misophonia and they really feel that it should be called annoyance hyperacusis So regardless of if you hear the term Misophonia or Misophonia or annoyance Hyperacusis it's the same thing. And I think that that's important. So I try to be careful with my wording with other professionals. Um, most people know it as misophonia That is the most common thing you get on TikTok. They're talking about Misophonia. You get, you know, social media. It's Misophonia you talk to psychologists, it's misophonia. But there are some audiologists for good reason, who believe that because it is a type of hyperacusis and because that is how you code it, that it is, it should fall under that hyperacusis umbrella and should be termed annoyance hyperacusis. So you'll see me utilizing those terms kind of interchangeably. And I'm always sure to tell patients and families that that they might see it in two different ways.
Carrie: [00:09:05] Okay, well, they learned something already, right? As far as terminology. And I thought that was going to be a simple question, but it was obviously yeah, that was that's good to know. So I guess we should define like what is misophonia And I think we and can is it a different definition than Hyperacusis? Then.
Lindsey: [00:09:30] Yeah, well, it definitely is a different it is a it is different than hyperacusis as we know it. So. A lot of audiologists think hyperacusis is the loudness hyperacusis. So really there are four different types of hyperacusis. There's loudness hyperacusis as most audiologists know it by, right? So people who are sensitive to moderately loud sounds or even relatively soft sounds, they're so sensitive to those where other people are less sensitive or have kind of a normal sensitivity that's considered loudness. Hyperacusis So when you're testing LDLs and uncomfortable levels of loudness, that's what we're talking about is the the. Loudness hyperacusis. Then there is pain Hyperacusis. Which is when a sound elicits a physical pain in the ears. Okay, so this is and it's very specific, almost like a this is a horrible imagery, but but like a pencil being stabbed into the ear. And for that that's a medical referral. So when I see the pain hyperacusis, I'm like, okay, I'm that's not my specialty. I'm going to send you off, you know, to ENT because usually they need to take care of that in a different way. And they have found that with pain hyperacusis sound therapy is less effective. So they're coming up, they're, they're still researching it and coming up with effective treatments. Then you have fear hyperacusis, which we typically know it as Phonophobia They're interchangeable and they mean basically the same thing. They're it's just a different way of using the terminology and then annoyance hyperacusis, of course, is Misophonia.
Carrie: [00:11:16] Okay. Oh wow. And so yeah, there's I didn't know there was four types of hyperacusis too. So being kind of, I guess in a different realm of audiology, sometimes you learn different things along the way, But so kind of digging a little deeper into the topic of, of Misophonia two is what is the prevalence of the individuals that have misophonia.
Lindsey: [00:11:45] So there is a huge if you look at the literature, there's a huge range that is is listed anywhere from 5% to 20% to 79% of the population has some type of misophonia. And when you think about that, this is why I think there's such a big range, because you think about sounds that you don't like. And a good example is being bored. So that bothers almost everybody. I've very rarely ran into someone that's like, get like a high off of that sound, you know, it's the sound that everybody's like, Oh, I don't like that sound. It hurts in my body. It makes me feel frustrated. And that's a good example of Misophonia. Now, does how often does that happen, though? It really doesn't happen that often. How much does it affect your life? It doesn't really affect your life that much. And so unless you know you're in the classroom and maybe it does affect you that much. But, you know, I think the the prevalence is pretty close to about 6% of the population, in my opinion. When you're talking about severe misophonia that needs to be treated because similar to tinnitus, when we talk about tinnitus, someone can have tinnitus, but it's not affecting their life in a negative way this is there, Misophonia. You can have misophonia most people have sounds that they don't like or sounds that make them angry. But if they don't, if they don't hear that sound very often, then it's not necessarily something that they need to get treated right away. And then you have those where it's affecting just every every second of every day. And those are the patients that we really need to help and be there for.
Carrie: [00:13:38] Yeah, which I think is a great question. My next question was like, who is there kind of a, I guess a population that's typically affected more severely with Misophonia?
Lindsey: [00:13:50] Yeah. So that's a very good that's a very good question. And honestly, anybody, anybody can be affected by misophonia anybody can get it. So it's not just one population. Um, I've seen it, I've seen it all. I've seen it from, you know, a two year old to, you know, geriatric. It can happen to anyone, even without any other comorbid conditions. However, there are some conditions that we see a little bit more prevalence in, and that includes any any person that has any type of sensory disorder or depression and anxiety or who has the HSP personality trait, any type of neuro atypical diagnoses. We will often see some sort of sound sensitivity, whether that is loudness hyperacusis, the misophonia or a combination. A lot of times both another population that that kind of took us by surprise that we didn't really think about when we opened this clinic is a lot of the patients that Dr. JJ Wicker sees for auditory processing disorder end up coming to me to for sound sensitivity disorder. So we are really interested in doing some research to, to see. See if there is more of a prevalence for those that have auditory processing disorder to also have these sound sensitivity disorders as well.
Carrie: [00:15:23] Mm hm. Wow, That's interesting to to have that kind of connection. But it makes sense as far as having difficulty with auditory processing and then having some other auditory, you know, needs too. Yeah. So kind of getting into maybe a little bit more about the Misophonia, how what happens when someone has severe misophonia and what are their experiences typically?
Lindsey: [00:15:49] Okay. That that is the question that is such that's the big question. And you know you have your subjective what is the patient going through? What is the person going through when they have misophonia? And then you have the more objective like what is happening in the brain, in the body when you have misophonia so subjectively. Um, so I'll just give you a few examples of, of, of the way that, so.
Carrie: [00:16:14] I think examples are great. Yeah.
Lindsey: [00:16:16] Yeah. So I have one client who said that whenever she hears a specific sound, she, she says it feels like there's a horrible itch in her brain and she just can't scratch it. And I had another patient who every time he heard someone sniffle, he said he wanted to just crawl out of his skin. I've heard. I just want to pull my hair out. I just want to choke the person making that sound. Um, and a lot of times you will. You know, one of the questions I always ask patients is, do you have any thoughts of self-harm? Do you have any thoughts of harming others? And I think that as a profession, those are questions that we need to be very open to asking. And a lot of times with patients with Misophonia, what I found is they'll say, Yeah, in the moment I have these feelings, I want to hurt that person or I want to because it's this anger response in the body. It's this fight or flight response in the body and it's fight that comes out in some people they don't most of the time they don't act on it. They have the thought. And then when they when their central nervous system calms down after they've been exposed, they're able to, you know, be okay. But there is there there are patients who will scratch themselves, you know, when they or kind of clench their fists and and dig their fingers into their their hands or bang their head against the wall because it's it's so difficult to cope with what's going on on the inside of their head that they they do something on the outside to try to I don't know the right like.
Carrie: [00:17:59] Manage it or.
Lindsey: [00:18:00] Kind of Yeah. Kind of cope with it in that way. Um, so definitely that's what is subjectively going on. There is a physiological response. So a lot of times there is a tightening or a pain somewhere in the body. A lot of times it's like a tightness in the chest or the neck muscles tighten up. But I have had patients who their feet, their feet like clench up when whenever they hear that sound or their back. But it's very interesting when I ask people, when you hear that sound, do you get a pain in your body? Because, you know, of course we're looking for the pain in the ears. But a lot of times they'll say, Oh, it hurts. And I'll say, Where does it hurt? And they won't say it hurts in their ears. Most of the time they'll say, It hurts in my head, it hurts in my chest, it hurts in my belly, it hurts in my legs. And that's really interesting. So you have that with most patients. You have that feeling that they're getting physically in their body and then you have this emotion that they are getting in response to the sound. So there is they've done imaging studies on what happens to someone when they are triggered with their trigger sound. And there are at least seven different areas of the brain that light up when they when they've mapped this out. And all of those areas are attached to emotional regulation. And so it's very much a system where the auditory processing center and the emotion regulating system in the brain and physiological processes in the body are all connected.
Lindsey: [00:19:41] And so I think that really. That brings out the next question. Who should be treating this? Because it's a psychological thing. It's a physical thing. It is an auditory thing. So a lot of times we see occupational therapists, um, anybody in the mental health care field and then audiologists. And what I noticed when I was at the children's hospital was we were part of the rehab department and I would have occupational therapists come up to me all the time and they'd say, I just got a I just got a referral for Misophonia. I have no idea how to treat this. And and I have seen actually a psychologist in my office for her misophonia and she's like, I don't know how to treat this, but people come to us asking and we don't know how to treat it. And so there definitely are people who specialize in it. There are occupational therapists that specialize in it. There are audiologists that specialize in it, and there are mental health care professionals that specialize in it. And sometimes the case is so severe that you really need a combination of all three. Sometimes it can be handled by one. Sometimes you really need a combination of all three because all of those things need to be addressed in order to to really get that misophonia under control.
Carrie: [00:21:05] Yeah, I mean, especially when you have all those different experiences having that like inter-professional relationships with people that can kind of help out with whether it's a more sensory or a more auditory or more kind of, you know, physical things going on too right now.
Lindsey: [00:21:26] And unfortunately, when what we have seen is that when somebody who doesn't specialize in it or doesn't know exactly how to treat it, when they when they're well, well, excuse me, well meaning clinicians, they can treat it inappropriately and it can actually make the problem worse. So two of the ways that I've seen this is if a child sees a therapist and the therapist plays a say it's baby crying that they're reacting to. So the therapist plays the baby crying while the child is swinging on a swing. Okay? And they think, okay, so we're pairing this negative stimuli to this pleasant activity and, you know, that doesn't work. That's exposure therapy.
Carrie: [00:22:16] Yeah.
Lindsey: [00:22:17] And and it doesn't work because what's happening this misophonia misophonia is a conditioned response. So think back to Pavlov's dogs. We all, most of us remember Pavlov's dogs, right? So Pavlov had these dogs. He'd ring a bell, give him a steak or whatever, and then he found that they would start to salivate just from hearing the bell. That's how I kind of explained to people how this conditioned response to sound is. So you have this sound that at some point in time. Maybe trauma, maybe something else. The brain put it together as something that it needed to fear or to fight. Okay, so it got the limbic system involved. It got our autonomic nervous system involved. And so whenever that sound went off, just like Pavlov's dogs with the bell, the anger response or the the rage response or the anxiety response and then that feeling in the body, it went off just like the salivating of the dogs. Now, with treatment, I do just the opposite. So I with sound therapy, I deconditioned the response because what we also learn from Pavlov's dogs is eventually those dogs stop salivating after so long of not having that stimulus. So when I do active sound therapy, which I which I got from Jastreboff, that's what he recommended. Um, my goal is to present the sound in very small, very, very small chunks of time.
Lindsey: [00:23:56] Again, while they're doing something that they're happy doing, you know, having a good time playing a video game, anything. And then just a tiny, small chunk, very brief of the stimulus, but it's not quite like exposure therapy because we're trying to get it for for the patient to hear the sound without going to the fight or flight response without triggering. And by doing that, you can decondition the response in the body and in the brain to that sound. And even for my patients who have multiple sounds that they're dealing with, what I've noticed is that a lot of times if we can tackle the one that is is the most difficult for them or that is affecting their life the most, then a lot of times it will it will kind of transfer to to how they relate to other sounds as well. Sometimes it doesn't and we have to tackle each one at a time. But a lot of times, because our brain is so crazy and amazing and does all of these things that it thinks is good for us or thinks it's helping us and it's actually hurting us and making life harder for us, we just have to teach our brain what it is we want and how to get that. So yeah, a really long answer to your question.
Carrie: [00:25:13] No, that was a good one though. But I guess it kind of gets me back to another question. You talked about like, you know, your example of of the baby crying, for example, being a trigger. So what are some of the common triggers that you see when people come in for Misophonia?
Lindsey: [00:25:32] So there are definitely very common ones that people can relate to. Sniffling is a really common one. Um, coughing, mouth noises, eating. And what's interesting with Misophonia is that you can have the same physical response. Whether so if chewing, let's say chewing is the trigger, somebody could when they hear someone chewing, they trigger sets off their fight or flight response in their brain. They feel those really difficult feelings. But we also have found that even if they can't hear the sound, but they can just see it happening that they will still trigger. And so in my so when I'm doing treatments like this, I always make sure that when we're doing the active sound therapy, it's actually a video. So there's a visual and an auditory component to kind of help treat that. Um, I know that wasn't your question and now I've forgotten what your question was.
Carrie: [00:26:32] Yeah, no, we were just talking about the different triggers along the way, like, so you were like a lot of eating and like, chewing and sniffling.
Lindsey: [00:26:41] Yeah. So there's visual triggers and there's auditory triggers. It usually starts with auditory triggers and then it can be visual, it can be it can be a trigger just to one person, just to so even the sound that one person makes. But then if another person makes that sound, it's not triggering to them. Um, so chewing, sniffling, gross bodily noises, burping, those kind of things, whistling, um, those are all very common ones, but it really can be anything. And, and we've seen some really interesting ones. So baby crying is another one. And then you kind of have to, to weed out, okay, how much of this is loudness hyperacusis and how much is of this is the annoyance hyperacusis. Because you treat those two things differently and sometimes it's both. They've got the loudness hyperacusis and they've got the the misophonia or the annoyance h yperacusis So you start treating the, the loudness hyperacusis first and then you move into the annoyance Hyperacusis or the Misophonia. But we have had patients who have had very difficult, um. Triggers, such as I have one little guy and we're working with him because his mom's voice is a trigger. Now, that's a really hard thing. Your mom's voice and you're a child, and every time you hear your mom's voice, you trigger, um. Laughter So laughter is, you know, if that's your if that's your child's trigger, if that's your trigger, that's really hard.
Lindsey: [00:28:12] And that is definitely taking away from not only the patient's quality of life, but also those that are living with that patient and constantly walking on eggshells. I had one mom reach out to me who was pregnant and her daughter was her trigger was a baby crying. And they were terrified. They were terrified of this baby coming because their daughter was so reactive to and physically aggressive towards hearing a baby cry. So this is when you're talking about the severity and who should be treated and when. It's just kind of a normal phenomenon in our brain with the chalkboard. That's how that's kind of how you determine, well, who should be treated and to what lengths and in what order. All of that. And that's where questionnaires really come into play and getting as much information about the case as possible, trying to find out all the triggers. Is it just one trigger? Um, and is it only with one person? Those are usually the easiest ones to take care of. Um, but it, it really can be any sight or sound. And we found that a lot of times there is some form of trauma that kind of preceded this, this conditioned response. We can't always we can't always say that though. We can't always narrow it down to some kind of trauma.
Lindsey: [00:29:39] Now, as you stated, I ended up getting becoming a hypnotist, mostly for tinnitus. As I read that hypnotism could be helpful for tinnitus patients, but I have found it extremely helpful for Misophonia patients. And what's interesting is the when we do regression, they will have circumstances where they have heard the sound like sniffling and had a very strong emotion, like fear or sadness or, you know, being scared of the situation. And that's what, you know, it's a perfect combination, combination for the brain to be like, oh, we need to keep you safe when, you know, our subconscious brain is amazing and, you know, if you. So I had a patient who regressed back to a scene where he almost drowned and he his parents got him out and everybody was crying and he was scared and sniffling. And then he got yelled at because, you know, when you're a parent, you're scared. And it's like instead of like, comforting, like you comfort, but you're also like, what did you do that? And for a child, the brain is like, oh, okay, I hear that sound sniffling and I'm feeling this horrible feeling and I wasn't safe. And so your brain makes this this connection. And so it's very interesting. And that is that's definitely I'm sorry, I went on a tangent on that.
Lindsey: [00:31:10] But but definitely what I've seen in a lot of people and trauma means can can be big or small. I've I've had patients that they knew exactly like they were abused as a child and their dad yelled. And so whenever they hear a man yell, they go into the fight or flight. I mean, that is very obvious. But trauma to a child or even to an adult can be just anything that's very, very difficult, that has an emotional component to it. And then you add a sound component to it. And then when it gets all mixed together in the subconscious mind, then you get this conditioned response. And the more you hear it and the more you get that, that that response, the stronger it gets, which is why the exposure therapy is not great, because all you're doing is strengthening that conditioned response, because they may be swinging on the swing, but they're hearing that over and over again, over and over again. And they're they're responding. They're just in this constant state of of fear or fight or, you know, just the survival mode. So it's really when you're treating misophonia, it's really learning to treat a lot of different things at once. You are using sound therapy to help the brain understand. Passive sound therapy helps the brain understand that sound is safe and that some sounds we can block out.
Lindsey: [00:32:35] Active sound therapy is giving little chunks of the sound. That's the trigger. Um, where they don't actually trigger so that the brain starts to learn. Oh, I don't. Need trigger when I hear this sound or see this sight. Um, and then as time goes on, then you can increase that. So the point of misophonia training or therapy is, in my opinion, is to not have the patient ever trigger when they're doing their, their practices. And the biggest sign of success or predictor of success that I've seen in my patients is the patients who really put in the work. And I think this is one thing that is a deterrent for some patients to seek help is it takes a while. It takes kind of a while to to really retrain your brain and to learn new things. And, you know, combine that with cognitive behavioral therapy and combine that with strategies to regulate the central nervous system when you're, you know, your limbic system has gone haywire and you're in that flight or fight response and you need to learn how to kind of tone, you know, tone that down, so to speak. That's a very good way of saying it. But, um, so it's this very complex combination of things that can really help a person, but it does take work on their part. It does.
Lindsey: [00:34:09] Take daily. The.
Carrie: [00:34:12] Yeah. No. So I was going to ask you, though, Lindsay, like kind of going back to diagnosis, do you have a specific like test battery or is it more going through like what you said, deeper dives into questionnaires and case history? How how does that work? Yeah.
Lindsey: [00:34:32] So right now there is no real gold standard for making a diagnosis and there is no true diagnosis of misophonia yet, although I really think that will change. We've so much research has come out even in just the last year. This has really been a hot topic in especially in the psychology world, but there is no gold standard for how to test for it or diagnose it. However, there are some very, very good questionnaires that really can get to the heart of the feelings that are associated with certain sounds, both physical and emotional, and how severe it is. So even though there's not even really a very good way to say like, you know, with hearing loss, we're used to saying mild, moderate, severe, profound. And even with tinnitus, we have questionnaires that will kind of help us label it as such. Misophonia is a little bit more tricky. However, it's obvious when somebody needs help, you know, and it's obvious when it's severe. Um, so there are a lot of great questionnaires. I have my favorites. Um, but, and they're all accessible online and it's a great way to see, you know, they, they ask all the questions. The Sussex Misophonia scale is one of my favorites, but everybody kind of has a favorite who works in with this, and it's not the only one I use. Um, but I, but I like that one because it does have different, you know, subscales for emotional impact and avoidance and repulsion and, and things like that and pain. Um, another thing I always do LDL testing on my patients that come in, even for Misophonia, I always do an audiogram.
Lindsey: [00:36:20] I include LDL testing because so often we don't know that they actually have loudness hyperacusis in addition to the the misophonia. And when I have a patient that has both, most of the time I will treat the loudness hyperacusis before starting treatment on the Misophonia it's been a little bit more effective for my my practice to do it in that order. There are times when the misophonia is so destructive and so harmful that that we actually try to tackle that first. But that is one thing that I always do. You know, I'm I'm an audiologist at heart. And so I want to see what what else is going on in their the way their brain is processing loud sounds as well as how their brain is processing sounds they don't like. And a lot of times you get patients that come in and they'll say, you know, whenever I hear a helicopter, I get really angry. Okay, well, that's two different things that it could be that could be loudness hyperacusis because it might be the loudness that's just so loud. And then they get angry. But most likely it's both. They they have they're having a response to a loud sound and it's a very negative, physical, emotional response. And so, so the triggers helicopter. But they've got both. It's both of those things happening. So we kind of combine the therapies that way so that we can address both.
Lindsey: [00:37:52] Jeez, that one happened.
Lindsey: [00:37:53] That's really interesting is once you do overcome the misophonia the trigger. Um, let me give you an example. I had a patient who we, we got through. It took 12 weeks. And for most neurotypical people, 12 weeks is about average. Okay. That's a that's quite a while to everyday work practice something that. And what I tell patients is that 12 weeks is going to go by anyway, so you might as well improve your life in that 12 weeks. But I did have one patient. His trigger was hearing mouth noises through a microphone. So when you think I'm not going to make it the sound now because that would just anybody who may have that have misophonia would be triggered. And I hate doing that. Um, but we conquered that for him. He, he, he was very religious, a little cute. Eight year old kid, loved going to church, but he would just, just sit with his ears covered just in fear of that sound. And we got that sound. He overcame the sound so it didn't trigger him. It didn't give him the feeling of anger or rage or any of that when he heard it. But what happened? What was underlying that was a phonophobia. So he was going into fight or flight before, just out of fear of being in the presence of that sound, even though he'd overcome.
Lindsey: [00:39:23] That.
Lindsey: [00:39:24] Taking a trigger. So then we worked with the Phonophobia, the fear of being in the presence of that sound. And now he's great. He's great. So it's really just kind of this puzzle and unraveling this mystery. And every patient is different. And I love that. I love that. You know, it's it's you have to be very creative and think pediatric audiologists especially know that you have to be creative. And that's part of the fun. And that's part of the anxiety of it as well, is, you know, when something doesn't work and it's worked on so many other people, you have to you have to be like, okay, we're going to find something that works and we're going to figure this out. And you do. And there's so.
Lindsey: [00:40:03] Many. He did approach the patient who has who has misophonia that.
Lindsey: [00:40:12] There's always a solution. I feel that's that's one of my mottos is everything is figureoutable, right?
Carrie: [00:40:18] No, that's a great motto. But I know earlier we were kind of talking about, you know, there's a lot of not a lot, I should say a few OTS and a few psychologists and a few audiologists that really kind of specialize in misophonia. And just I know in our area, like the person that I was working with, their family was like, we've called around to like psychologists and different places. And we mentioned, you know, misophonia and they don't even know what we're talking about. Yeah. So I guess my question to you is I know you have like an online program, but what can people do if they don't have anyone that kind of specializes in there? Or do you have ways that people like to cope with everyday life?
Lindsey: [00:41:10] Well, they're definitely they can definitely look up ways to regulate the autonomic nervous system, but that is a coping technique that's not going to make the misophonia go away. So absolutely, I encourage, you know, researching different things that can help regulate the nervous system. And a lot of there's there's so much information out there on how to do that on YouTube, on Pinterest. You know, there are a lot of different techniques that you can do that are research based to help calm the central nervous system down after you've been triggered. So it's it's more of a bandaid than a fix. Right? But those are those are techniques I also teach my patients as we're going through those are also very important. And so if you're someone who has misophonia and you don't know where to go, there is nobody in your area and you're just trying to get through your day. Then definitely looking at ways to regulate your nervous system and trying different ways. I when I see my patients, I have give them 20 different types of ways that they can regulate their nervous system if they get triggered and they'll like some of them and they'll hate some some of them and all everybody's different. And that's why I give them like this huge bucket full of things that they can use.
Lindsey: [00:42:35] And we practice it in the clinic or, or virtually, if we're doing it virtually so that they can really have a tool to draw on in those moments when things are just really, really hard. And you know, it's really, really hard on, on our bodies, on our when our nervous system goes into that state and we can't get out of it, it's it's very traumatizing to our bodies. And and so that's my best recommendation as far as how to cope Now understanding that you really that's not going to eliminate the conditioned response in the the subconscious mind, in the brain, in the amygdala. You really have to to have somebody that knows what they're talking about. And this is this is where this is this is where the trouble lies. Right. Who knows what they're talking about? Yeah. And how do you find them? And this is this is why I created the online platform that I have, the sound immunity program. It's a coaching program. So, you know, audiologists know we can't we can't do telehealth. It's not a thing yet. Yeah. In most places. And so what I, what I, I got this idea from seeing other audiologists who had created tinnitus coaching programs and it allows a little bit more flexibility for people from all over the world to connect with you virtually to get coaching through their experience and to get guidance on on how to to get through this and and move past this.
Lindsey: [00:44:23] Now, of course, any type of program like that, it's a coaching program. You can't do any diagnostic testing. You can't make an official diagnosis. But there's still a lot that you can do for these people. And I now have patients from all over the world in all different time zones, and it's incredible. And I've also, um, created an online program that's kind of a self-paced program that has everything. So somebody who, you know, maybe is uncomfortable with the one on one face to face type thing, Um, we'll, you know, they can go through a course, a 12 week course, but they can do it at their own pace and then always go back to it and have that. And I felt that that was really important to to create because of exactly what you said. There's just not very many people that understand. And if you get someone that says, well, just wear headphones. Now you're going to make it worse.
Carrie: [00:45:20] And that was actually one of my next questions. I'm like headphones and no headphones. I think it um, yeah, it probably depends, but and where they're at in that process. But I know there's a lot of different answers for that.
Lindsey: [00:45:34] There are a lot of different answers and you know, headphones have their place. Noise reduction headphones have they have their place. And when I see so I've had patients or clients that come to me and they've worn headphones noise canceling headphones for seven years because their ABA therapist told them that that's what they needed to do to just to get through life, right? And so by the time they come to me, they have misophonia and such severe hyperacusis because they haven't gone anywhere in the world without these noise canceling headphones. And there is a way to still wear headphones. Noise canceling headphones without getting as much auditory deprivation and that is get headphones that will stream some sound in. So if you're going outside, so so if you know for these patients, I'm never going to say, nope, stop wearing your headphones because they will never be able. I mean, that's just it's that's too much. That's you can't do that. And so what I'll typically say is, okay, we're going to just try to reduce it like just a tiny little bit. We'll try, you know, try going, you know, holding the headphones out for ten seconds and then put them back, you know, and we start very, very slow. But another thing is, if you can stream some very soft white noise, pink noise, red noise, even some nature sounds, then at least their auditory system is getting, you know, a more broad range of stimulation and we're getting less of that auditory deprivation. Now for parents who, you know, they say, can we just use them for the fireworks or for. Of course, Yes. You know, you're not going to do damage. In fact, it's it's good to use them for those situations anytime, you know.
Lindsey: [00:47:24] But if you know, if it's just like a you're going to the kids museum and you're not far enough along in your therapy program to really be able to do it without your headphones, then wear your headphones if you can stream something to them even better. But I mean, the whole point is that we want to improve the quality of people's lives and so we don't want to take anything away from them. And when you're working with Misophonia and Hyperacusis and Phonophobia, it's a slow process and you have to be okay with that. If you're a professional that wants instant results or if you're a patient that wants instant results, you know, there is no instant thing that's just going to that's just going to help. And I wish there was. And you'll see ads on Facebook for things that say, if you have misophonia, this is what you need. And they they do have their place, right? Some of those things do have their place. But in reality, you want to avoid the use of headphones for noise cancellation purposes only as much as possible. And if you do need to use them, try to stream something to them. And there are a lot of great products on the market right now. Apple has some, Bose has some where you can still hear what's on the outside world, but then stream something that can kind of help your central nervous system. And then if there's a sound that's very bothersome, you can push a button and it can activate the noise reduction so that all you're hearing is the sound that's streaming, you know, to your ears. And so that's typically what I recommend to my patients who have worn headphones for a long time.
Carrie: [00:49:08] Okay. Yeah. Because I think being in the school system, especially working with some neurodiverse individuals too, there's a lot of headphones that are happening in a classroom and not that I've done any kind of misophonia questionnaires or anything with these kids, but it makes me think that they probably do have triggers. Yeah, absolutely sounds.
Lindsey: [00:49:33] And that's what's so hard is that as audiologists, we we know most of us know that by depriving the auditory system of sound, you're going to make hyperacusis loudness hyperacusis so much worse. I mean, it's, it's it's really it sounds counterintuitive, but when I see when I see parents or I'm talking to parents about these headphones being used all the time, you know, I say, really what we want to do is try to enrich the environment with with pleasant sound for as much of the time as we can. We don't want to deprive the ear of that that auditory system of hearing sound because then when you do your central nervous. System thinks this isn't right, this isn't safe, and then that's. So you're more likely to go into that fight flight freeze response. And that's just not what we want. We want just the opposite. So it seems counterintuitive to a lot of families, but we really, instead of taking sounds away in order to help the auditory system and the subconscious mind sort of get over this, we we want to put sounds in, put good sounds in and and strengthen the auditory system.
Carrie: [00:50:51] Yeah, that that's great. So overall, I feel like there's that Misophonia is definitely not cookie cutter at all. No. So and every individual is so different. So really like taking a deep dive into a questionnaire and case history and finding out more about what that patient is experiencing. And then like you said, it's a slow process that takes a long time and you can't expect to have quick results with it. Yeah. Is that thing so kind of wrapping up, I thought first, um, a couple of things. Did I miss anything like important as far as the question goes that you might want to think like our audience, you know, that kind of not to no pun intended, but like, it triggered your mind. Yeah. Did I miss something big that you're like, oh far Misophonia goes, This would be something I think we.
Lindsey: [00:51:57] Really talked about a lot of things. Um, I think it's important for as clinicians, as audiologists or as other type of professionals to, to be careful to stay within our scope of practice. And while I have trainings and I and I do things with my patients or with my clients through coaching, I know when something's out of my realm. I know if I've got somebody who really needs to be seeing a psychologist or a psychotherapist, we need to recognize that, you know, okay, now we need to this is out of sight of my scope of practice, and I feel like we really need to recognize that all professions, all professions do. And I and I feel like it's so important to be to have if you're going to work with with well, with any of it, with anybody. If you're going to work with anybody, you need to have a team of people that you know that you can work with together so that you know that patient or that client can really get the best results. And there have been times when I have gone through treatment with someone and we are not making progress. And it it appears that that they really do need more psychotherapy than they do sound therapy. And so I think admitting that is not wrong. It's honest and um, not trying to do something falsely or that you don't really know what you're doing, doing cognitive behavioral therapy. There are a lot of people who who audiologists within our scope of practice to do cognitive behavioral therapy with patients who have tinnitus and sound sensitivities.
Lindsey: [00:53:35] But you have to know how to do it. You can't just jump in and, you know, say, I'm going to give this a try. I'm going to give this a whirl. And so, you know, there's that. But then I guess the other thing just to wrap up is I think everybody is going to start seeing more and more about Misophonia and Phonophobia in the coming years, whatever that ends up being called or defined as, because even the definition isn't totally agreed on by different I mean, there's a whole committee, a consensus, a misophonia consensus committee to try to define what it even is and how to how to do all of this and how to treat it, how to, you know, do the intake, all of that. And that's great. But right now, we're still kind of in the beginning parts of this and there are a lot. There's a huge need. There are a lot of people that need help. And we're going to be hearing more and more about those in audiology and in psychology and in occupational therapy. So I think I'm excited. I can't wait. It seems like a new article comes out every every month and I just eat it up and I love it. And I think, I mean, even a year from now I may listen to all the things I said in this interview and think, Oh, well, that's okay. Now I have a better understanding of that. And oh, now I've changed, you know, just because.
Carrie: [00:55:01] Yeah, and that sounds like we're probably have to have another podcast because it is one of those like niches that we don't know enough yet. And as professionals, we know that what we believe today or what we know today, being a professional and getting more research may be different than what we do a year from now. And that's just keeping up with the literature and the research and being an ethical professional, right?
Lindsey: [00:55:30] Absolutely. Yep. That's perfectly stated.
Lindsey: [00:55:33] Yes.
Carrie: [00:55:34] So. Well, Lindsay, I cannot thank you enough for being part of the EmpowEAR Audiology podcast. I if our listeners have more questions for you, is there a good way to reach out to you?
Lindsey: [00:55:48] Sure they can go to. My email. It's a long one. I'm sorry. You know what?
Carrie: [00:55:54] I can put that in the show notes. I'll put the email in there. But can they? They can also visit your your guys's website, right?
Lindsey: [00:56:03] Yeah. So there's two websites. So we have one for our pediatric clinic which is little heroes hearing clinic.com or you can go to sound immunity.com and that's is is of course just for the sound sensitivity portion of what I do but I do free consultations or extended consultations. If somebody just wants to talk to me and try to get some ideas or try to to figure out what's best and so they can always schedule a free 15 minute consultation through sound immunity.com. And then we can kind of see if you know what some of the options are for them.
Carrie: [00:56:43] Okay. Well, thank you again for being a part of the EmpowEAR Audiology Podcast. It was such a great conversation and I'm sure our listeners will get so much new information as well as I hope that they reach out to you if they have a patient that they happen to be working with that has Misophonia and they need some different strategies and supports and therapies, they have a place to go to. Absolutely.
Lindsey: [00:57:11] I love talking to other audiologists and other professionals and kind of troubleshooting different cases, so please reach out to me. I love I obviously love to talk about this a lot.
Carrie: [00:57:22] So so I love hearing your passion in it because that's what we need is passionate professionals who are targeted in some of these areas. So thank you for all of that you do.
Lindsey: [00:57:36] Well, thank you. I really appreciate being here and letting my you letting me talk about all of this stuff that I just love to talk about.
Carrie: [00:57:46] All right. Well, thank you, listeners. If you love this podcast, please share it with others that you know so others can enjoy the EmpowEAR Audiology podcast.
Announcer: [00:57:57] This has been a production of the 3C Digital Media Network.
Announcer: [00:00:00] Welcome to episode 56 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. All right. I am really excited today to have a special guest with me. I have Dr. Lindsey Tubaugh, and I know I said that wrong. Tubaugh Thank you. Um, with me today and she has been a practicing audiologist for over 20 years, working with both adults and children in a wide variety of clinical settings. She has co-founded the Little Heroes Pediatric Hearing clinic, where she specializes in tinnitus and sound sensitivity disorders, including loudness, hyperacusis, Annoyance Hyperacusis, Misophonia and Fear Hyperacusis and Phonophobia, which we're going to talk about today. Her passion is helping patients understand that tinnitus and sound sensitivities, while sometimes debilitating, can be managed with careful testing and treatment, patients can live their best lives. She has become a Rapid Transformational therapist to utilize hypnosis and further assist patients with tinnitus and sound sensitivity struggles. She created the Sound Immunity Program, which is an online coaching program for those struggling with sound sensitivities. So, Lindsey, thank you. Welcome to the EmpowEAR Podcast. Oh, thank.
Lindsey: [00:02:03] You so much for having me. I'm so excited. I love talking about this. So I'm I can't wait to just dig in. Yes.
Carrie: [00:02:12] And that's exactly what we're going to do today. But before we dig into that, every guest that I have that is an audiologist because it's such a unique and fun field. I always like to find out, how did you actually get into audiology? Do you have a story behind it?
Lindsey: [00:02:28] You know, I feel like my story is very similar to others stories in that when I was in college, I was going into special education and then I learned more about speech language pathology. So I switched majors to to speech language pathology. And as an undergrad, you take both audiology courses and speech pathology courses. And I just loved the audiology courses so much more. And so it just kind of morphed. And then, you know, at the end I was like, I'm not I think I would have been happy being a speech pathologist, but audiologist audiology just called to me. So that's how I ended up here and I couldn't be happier.
Carrie: [00:03:08] Well, good. I know. I feel like a lot of people have that pathway too. Yeah. Yes. So can you just share a little bit, too, about your professional background? Because I know that you have co-founded Little Heroes, but where did you I know you started out somewhere before that.
Lindsey: [00:03:27] Yeah. So I started out, um, way back when you used to get a master's degree. That's what. That's me, too. And right after I got my master's degree, I got hired on in Iowa to for private practice. And so I ran two offices in southeast Iowa, mostly for adults. We did get an occasional child here and there, but it really was mostly an adult private practice dispensing clinic. And I worked there in addition to some ENT work PRN, um, here and there for about ten years. I did that before moving to Utah. And I.
Lindsey: [00:04:14] Really want.
Lindsey: [00:04:15] To see. Um, so I really wanted to find something that fit my personality a little bit better. So a job came open in Salt Lake City and for a newborn hearing screening program. That needed to be needed, an audiologist, you know, to do the testing and the follow up. And so I interviewed for that position and I got that position and I worked doing that for about three years before transferring to the children's hospital here in Salt Lake City. And I learned so much about pediatric audiology and met just the most amazing people when I worked at the at the pediatric hospital here. And I really loved it. I, I moved into a management position over at the audiology Department at the hospital. And I was doing that for about three and a half years and then realized that I really missed patients. I really missed missed patient care and a lot of the things that I was interested in, like misophonia, um, weren't things that were very conducive to, to, to a hospital type setting. And so one of my best friends and I decided to open our own practice and specialize in these things we do any the only thing we don't do in our pediatric hearing clinic in Layton, Utah, is vestibular testing. But otherwise we are a full clinic offering all services to pediatrics. We also see adults for our specialties, which is auditory processing disorders for Dr. JJ Wicker and then sound sensitivities and tinnitus for myself.
Carrie: [00:05:59] Oh wow, that sounds like an amazing way to kind of get out of a management position, but then to be able to use like the skills and your passion in a different way.
Lindsey: [00:06:10] Exactly. Exactly. Yeah.
Carrie: [00:06:13] Well, um, someday I would love to come visit you guys. Oh, we'd love to have you. Yes, But anyways, I know I was so excited. Dr. Gail Whitelaw had recommended that I reach out to you because she's like, she has so much knowledge in the area of Misophonia. And so just in the setting that I'm in and educational audiology, I've run into a couple of students that definitely have been diagnosed or kind of have the characteristics of Misophonia. So I thought this would be a great topic for the EmpowerEAR Audiology podcast because we don't talk about it enough and I would love to have our listeners have a little bit more information. So I think the first question is I think people pronounce this in different ways, right? So the correct way.
Lindsey: [00:07:09] Misophonia Okay. So this has this is actually a bigger question than I think most people even realize because some people say misophonia, some people say Misophonia. And to me, I don't really care how they pronounce it or I don't. I say, Misophonia, Um, but you'll hear it both ways and it's kind of like with tinnitus. You'll hear some people say tinnitus and some people say tinnitus. And people have different opinions on that. But the bigger question to me is, is should we be referring to this as misophonia or should we be referring to this as annoyance hyperacusis And this is something that I never even knew was a thing until I went to, um, Iowa to their tinnitus. Every year they have a tinnitus conference and that's where they talk about how some people just get really, really upset by the term misophonia and they really feel that it should be called annoyance hyperacusis So regardless of if you hear the term Misophonia or Misophonia or annoyance Hyperacusis it's the same thing. And I think that that's important. So I try to be careful with my wording with other professionals. Um, most people know it as misophonia That is the most common thing you get on TikTok. They're talking about Misophonia. You get, you know, social media. It's Misophonia you talk to psychologists, it's misophonia. But there are some audiologists for good reason, who believe that because it is a type of hyperacusis and because that is how you code it, that it is, it should fall under that hyperacusis umbrella and should be termed annoyance hyperacusis. So you'll see me utilizing those terms kind of interchangeably. And I'm always sure to tell patients and families that that they might see it in two different ways.
Carrie: [00:09:05] Okay, well, they learned something already, right? As far as terminology. And I thought that was going to be a simple question, but it was obviously yeah, that was that's good to know. So I guess we should define like what is misophonia And I think we and can is it a different definition than Hyperacusis? Then.
Lindsey: [00:09:30] Yeah, well, it definitely is a different it is a it is different than hyperacusis as we know it. So. A lot of audiologists think hyperacusis is the loudness hyperacusis. So really there are four different types of hyperacusis. There's loudness hyperacusis as most audiologists know it by, right? So people who are sensitive to moderately loud sounds or even relatively soft sounds, they're so sensitive to those where other people are less sensitive or have kind of a normal sensitivity that's considered loudness. Hyperacusis So when you're testing LDLs and uncomfortable levels of loudness, that's what we're talking about is the the. Loudness hyperacusis. Then there is pain Hyperacusis. Which is when a sound elicits a physical pain in the ears. Okay, so this is and it's very specific, almost like a this is a horrible imagery, but but like a pencil being stabbed into the ear. And for that that's a medical referral. So when I see the pain hyperacusis, I'm like, okay, I'm that's not my specialty. I'm going to send you off, you know, to ENT because usually they need to take care of that in a different way. And they have found that with pain hyperacusis sound therapy is less effective. So they're coming up, they're, they're still researching it and coming up with effective treatments. Then you have fear hyperacusis, which we typically know it as Phonophobia They're interchangeable and they mean basically the same thing. They're it's just a different way of using the terminology and then annoyance hyperacusis, of course, is Misophonia.
Carrie: [00:11:16] Okay. Oh wow. And so yeah, there's I didn't know there was four types of hyperacusis too. So being kind of, I guess in a different realm of audiology, sometimes you learn different things along the way, But so kind of digging a little deeper into the topic of, of Misophonia two is what is the prevalence of the individuals that have misophonia.
Lindsey: [00:11:45] So there is a huge if you look at the literature, there's a huge range that is is listed anywhere from 5% to 20% to 79% of the population has some type of misophonia. And when you think about that, this is why I think there's such a big range, because you think about sounds that you don't like. And a good example is being bored. So that bothers almost everybody. I've very rarely ran into someone that's like, get like a high off of that sound, you know, it's the sound that everybody's like, Oh, I don't like that sound. It hurts in my body. It makes me feel frustrated. And that's a good example of Misophonia. Now, does how often does that happen, though? It really doesn't happen that often. How much does it affect your life? It doesn't really affect your life that much. And so unless you know you're in the classroom and maybe it does affect you that much. But, you know, I think the the prevalence is pretty close to about 6% of the population, in my opinion. When you're talking about severe misophonia that needs to be treated because similar to tinnitus, when we talk about tinnitus, someone can have tinnitus, but it's not affecting their life in a negative way this is there, Misophonia. You can have misophonia most people have sounds that they don't like or sounds that make them angry. But if they don't, if they don't hear that sound very often, then it's not necessarily something that they need to get treated right away. And then you have those where it's affecting just every every second of every day. And those are the patients that we really need to help and be there for.
Carrie: [00:13:38] Yeah, which I think is a great question. My next question was like, who is there kind of a, I guess a population that's typically affected more severely with Misophonia?
Lindsey: [00:13:50] Yeah. So that's a very good that's a very good question. And honestly, anybody, anybody can be affected by misophonia anybody can get it. So it's not just one population. Um, I've seen it, I've seen it all. I've seen it from, you know, a two year old to, you know, geriatric. It can happen to anyone, even without any other comorbid conditions. However, there are some conditions that we see a little bit more prevalence in, and that includes any any person that has any type of sensory disorder or depression and anxiety or who has the HSP personality trait, any type of neuro atypical diagnoses. We will often see some sort of sound sensitivity, whether that is loudness hyperacusis, the misophonia or a combination. A lot of times both another population that that kind of took us by surprise that we didn't really think about when we opened this clinic is a lot of the patients that Dr. JJ Wicker sees for auditory processing disorder end up coming to me to for sound sensitivity disorder. So we are really interested in doing some research to, to see. See if there is more of a prevalence for those that have auditory processing disorder to also have these sound sensitivity disorders as well.
Carrie: [00:15:23] Mm hm. Wow, That's interesting to to have that kind of connection. But it makes sense as far as having difficulty with auditory processing and then having some other auditory, you know, needs too. Yeah. So kind of getting into maybe a little bit more about the Misophonia, how what happens when someone has severe misophonia and what are their experiences typically?
Lindsey: [00:15:49] Okay. That that is the question that is such that's the big question. And you know you have your subjective what is the patient going through? What is the person going through when they have misophonia? And then you have the more objective like what is happening in the brain, in the body when you have misophonia so subjectively. Um, so I'll just give you a few examples of, of, of the way that, so.
Carrie: [00:16:14] I think examples are great. Yeah.
Lindsey: [00:16:16] Yeah. So I have one client who said that whenever she hears a specific sound, she, she says it feels like there's a horrible itch in her brain and she just can't scratch it. And I had another patient who every time he heard someone sniffle, he said he wanted to just crawl out of his skin. I've heard. I just want to pull my hair out. I just want to choke the person making that sound. Um, and a lot of times you will. You know, one of the questions I always ask patients is, do you have any thoughts of self-harm? Do you have any thoughts of harming others? And I think that as a profession, those are questions that we need to be very open to asking. And a lot of times with patients with Misophonia, what I found is they'll say, Yeah, in the moment I have these feelings, I want to hurt that person or I want to because it's this anger response in the body. It's this fight or flight response in the body and it's fight that comes out in some people they don't most of the time they don't act on it. They have the thought. And then when they when their central nervous system calms down after they've been exposed, they're able to, you know, be okay. But there is there there are patients who will scratch themselves, you know, when they or kind of clench their fists and and dig their fingers into their their hands or bang their head against the wall because it's it's so difficult to cope with what's going on on the inside of their head that they they do something on the outside to try to I don't know the right like.
Carrie: [00:17:59] Manage it or.
Lindsey: [00:18:00] Kind of Yeah. Kind of cope with it in that way. Um, so definitely that's what is subjectively going on. There is a physiological response. So a lot of times there is a tightening or a pain somewhere in the body. A lot of times it's like a tightness in the chest or the neck muscles tighten up. But I have had patients who their feet, their feet like clench up when whenever they hear that sound or their back. But it's very interesting when I ask people, when you hear that sound, do you get a pain in your body? Because, you know, of course we're looking for the pain in the ears. But a lot of times they'll say, Oh, it hurts. And I'll say, Where does it hurt? And they won't say it hurts in their ears. Most of the time they'll say, It hurts in my head, it hurts in my chest, it hurts in my belly, it hurts in my legs. And that's really interesting. So you have that with most patients. You have that feeling that they're getting physically in their body and then you have this emotion that they are getting in response to the sound. So there is they've done imaging studies on what happens to someone when they are triggered with their trigger sound. And there are at least seven different areas of the brain that light up when they when they've mapped this out. And all of those areas are attached to emotional regulation. And so it's very much a system where the auditory processing center and the emotion regulating system in the brain and physiological processes in the body are all connected.
Lindsey: [00:19:41] And so I think that really. That brings out the next question. Who should be treating this? Because it's a psychological thing. It's a physical thing. It is an auditory thing. So a lot of times we see occupational therapists, um, anybody in the mental health care field and then audiologists. And what I noticed when I was at the children's hospital was we were part of the rehab department and I would have occupational therapists come up to me all the time and they'd say, I just got a I just got a referral for Misophonia. I have no idea how to treat this. And and I have seen actually a psychologist in my office for her misophonia and she's like, I don't know how to treat this, but people come to us asking and we don't know how to treat it. And so there definitely are people who specialize in it. There are occupational therapists that specialize in it. There are audiologists that specialize in it, and there are mental health care professionals that specialize in it. And sometimes the case is so severe that you really need a combination of all three. Sometimes it can be handled by one. Sometimes you really need a combination of all three because all of those things need to be addressed in order to to really get that misophonia under control.
Carrie: [00:21:05] Yeah, I mean, especially when you have all those different experiences having that like inter-professional relationships with people that can kind of help out with whether it's a more sensory or a more auditory or more kind of, you know, physical things going on too right now.
Lindsey: [00:21:26] And unfortunately, when what we have seen is that when somebody who doesn't specialize in it or doesn't know exactly how to treat it, when they when they're well, well, excuse me, well meaning clinicians, they can treat it inappropriately and it can actually make the problem worse. So two of the ways that I've seen this is if a child sees a therapist and the therapist plays a say it's baby crying that they're reacting to. So the therapist plays the baby crying while the child is swinging on a swing. Okay? And they think, okay, so we're pairing this negative stimuli to this pleasant activity and, you know, that doesn't work. That's exposure therapy.
Carrie: [00:22:16] Yeah.
Lindsey: [00:22:17] And and it doesn't work because what's happening this misophonia misophonia is a conditioned response. So think back to Pavlov's dogs. We all, most of us remember Pavlov's dogs, right? So Pavlov had these dogs. He'd ring a bell, give him a steak or whatever, and then he found that they would start to salivate just from hearing the bell. That's how I kind of explained to people how this conditioned response to sound is. So you have this sound that at some point in time. Maybe trauma, maybe something else. The brain put it together as something that it needed to fear or to fight. Okay, so it got the limbic system involved. It got our autonomic nervous system involved. And so whenever that sound went off, just like Pavlov's dogs with the bell, the anger response or the the rage response or the anxiety response and then that feeling in the body, it went off just like the salivating of the dogs. Now, with treatment, I do just the opposite. So I with sound therapy, I deconditioned the response because what we also learn from Pavlov's dogs is eventually those dogs stop salivating after so long of not having that stimulus. So when I do active sound therapy, which I which I got from Jastreboff, that's what he recommended. Um, my goal is to present the sound in very small, very, very small chunks of time.
Lindsey: [00:23:56] Again, while they're doing something that they're happy doing, you know, having a good time playing a video game, anything. And then just a tiny, small chunk, very brief of the stimulus, but it's not quite like exposure therapy because we're trying to get it for for the patient to hear the sound without going to the fight or flight response without triggering. And by doing that, you can decondition the response in the body and in the brain to that sound. And even for my patients who have multiple sounds that they're dealing with, what I've noticed is that a lot of times if we can tackle the one that is is the most difficult for them or that is affecting their life the most, then a lot of times it will it will kind of transfer to to how they relate to other sounds as well. Sometimes it doesn't and we have to tackle each one at a time. But a lot of times, because our brain is so crazy and amazing and does all of these things that it thinks is good for us or thinks it's helping us and it's actually hurting us and making life harder for us, we just have to teach our brain what it is we want and how to get that. So yeah, a really long answer to your question.
Carrie: [00:25:13] No, that was a good one though. But I guess it kind of gets me back to another question. You talked about like, you know, your example of of the baby crying, for example, being a trigger. So what are some of the common triggers that you see when people come in for Misophonia?
Lindsey: [00:25:32] So there are definitely very common ones that people can relate to. Sniffling is a really common one. Um, coughing, mouth noises, eating. And what's interesting with Misophonia is that you can have the same physical response. Whether so if chewing, let's say chewing is the trigger, somebody could when they hear someone chewing, they trigger sets off their fight or flight response in their brain. They feel those really difficult feelings. But we also have found that even if they can't hear the sound, but they can just see it happening that they will still trigger. And so in my so when I'm doing treatments like this, I always make sure that when we're doing the active sound therapy, it's actually a video. So there's a visual and an auditory component to kind of help treat that. Um, I know that wasn't your question and now I've forgotten what your question was.
Carrie: [00:26:32] Yeah, no, we were just talking about the different triggers along the way, like, so you were like a lot of eating and like, chewing and sniffling.
Lindsey: [00:26:41] Yeah. So there's visual triggers and there's auditory triggers. It usually starts with auditory triggers and then it can be visual, it can be it can be a trigger just to one person, just to so even the sound that one person makes. But then if another person makes that sound, it's not triggering to them. Um, so chewing, sniffling, gross bodily noises, burping, those kind of things, whistling, um, those are all very common ones, but it really can be anything. And, and we've seen some really interesting ones. So baby crying is another one. And then you kind of have to, to weed out, okay, how much of this is loudness hyperacusis and how much is of this is the annoyance hyperacusis. Because you treat those two things differently and sometimes it's both. They've got the loudness hyperacusis and they've got the the misophonia or the annoyance h yperacusis So you start treating the, the loudness hyperacusis first and then you move into the annoyance Hyperacusis or the Misophonia. But we have had patients who have had very difficult, um. Triggers, such as I have one little guy and we're working with him because his mom's voice is a trigger. Now, that's a really hard thing. Your mom's voice and you're a child, and every time you hear your mom's voice, you trigger, um. Laughter So laughter is, you know, if that's your if that's your child's trigger, if that's your trigger, that's really hard.
Lindsey: [00:28:12] And that is definitely taking away from not only the patient's quality of life, but also those that are living with that patient and constantly walking on eggshells. I had one mom reach out to me who was pregnant and her daughter was her trigger was a baby crying. And they were terrified. They were terrified of this baby coming because their daughter was so reactive to and physically aggressive towards hearing a baby cry. So this is when you're talking about the severity and who should be treated and when. It's just kind of a normal phenomenon in our brain with the chalkboard. That's how that's kind of how you determine, well, who should be treated and to what lengths and in what order. All of that. And that's where questionnaires really come into play and getting as much information about the case as possible, trying to find out all the triggers. Is it just one trigger? Um, and is it only with one person? Those are usually the easiest ones to take care of. Um, but it, it really can be any sight or sound. And we found that a lot of times there is some form of trauma that kind of preceded this, this conditioned response. We can't always we can't always say that though. We can't always narrow it down to some kind of trauma.
Lindsey: [00:29:39] Now, as you stated, I ended up getting becoming a hypnotist, mostly for tinnitus. As I read that hypnotism could be helpful for tinnitus patients, but I have found it extremely helpful for Misophonia patients. And what's interesting is the when we do regression, they will have circumstances where they have heard the sound like sniffling and had a very strong emotion, like fear or sadness or, you know, being scared of the situation. And that's what, you know, it's a perfect combination, combination for the brain to be like, oh, we need to keep you safe when, you know, our subconscious brain is amazing and, you know, if you. So I had a patient who regressed back to a scene where he almost drowned and he his parents got him out and everybody was crying and he was scared and sniffling. And then he got yelled at because, you know, when you're a parent, you're scared. And it's like instead of like, comforting, like you comfort, but you're also like, what did you do that? And for a child, the brain is like, oh, okay, I hear that sound sniffling and I'm feeling this horrible feeling and I wasn't safe. And so your brain makes this this connection. And so it's very interesting. And that is that's definitely I'm sorry, I went on a tangent on that.
Lindsey: [00:31:10] But but definitely what I've seen in a lot of people and trauma means can can be big or small. I've I've had patients that they knew exactly like they were abused as a child and their dad yelled. And so whenever they hear a man yell, they go into the fight or flight. I mean, that is very obvious. But trauma to a child or even to an adult can be just anything that's very, very difficult, that has an emotional component to it. And then you add a sound component to it. And then when it gets all mixed together in the subconscious mind, then you get this conditioned response. And the more you hear it and the more you get that, that that response, the stronger it gets, which is why the exposure therapy is not great, because all you're doing is strengthening that conditioned response, because they may be swinging on the swing, but they're hearing that over and over again, over and over again. And they're they're responding. They're just in this constant state of of fear or fight or, you know, just the survival mode. So it's really when you're treating misophonia, it's really learning to treat a lot of different things at once. You are using sound therapy to help the brain understand. Passive sound therapy helps the brain understand that sound is safe and that some sounds we can block out.
Lindsey: [00:32:35] Active sound therapy is giving little chunks of the sound. That's the trigger. Um, where they don't actually trigger so that the brain starts to learn. Oh, I don't. Need trigger when I hear this sound or see this sight. Um, and then as time goes on, then you can increase that. So the point of misophonia training or therapy is, in my opinion, is to not have the patient ever trigger when they're doing their, their practices. And the biggest sign of success or predictor of success that I've seen in my patients is the patients who really put in the work. And I think this is one thing that is a deterrent for some patients to seek help is it takes a while. It takes kind of a while to to really retrain your brain and to learn new things. And, you know, combine that with cognitive behavioral therapy and combine that with strategies to regulate the central nervous system when you're, you know, your limbic system has gone haywire and you're in that flight or fight response and you need to learn how to kind of tone, you know, tone that down, so to speak. That's a very good way of saying it. But, um, so it's this very complex combination of things that can really help a person, but it does take work on their part. It does.
Lindsey: [00:34:09] Take daily. The.
Carrie: [00:34:12] Yeah. No. So I was going to ask you, though, Lindsay, like kind of going back to diagnosis, do you have a specific like test battery or is it more going through like what you said, deeper dives into questionnaires and case history? How how does that work? Yeah.
Lindsey: [00:34:32] So right now there is no real gold standard for making a diagnosis and there is no true diagnosis of misophonia yet, although I really think that will change. We've so much research has come out even in just the last year. This has really been a hot topic in especially in the psychology world, but there is no gold standard for how to test for it or diagnose it. However, there are some very, very good questionnaires that really can get to the heart of the feelings that are associated with certain sounds, both physical and emotional, and how severe it is. So even though there's not even really a very good way to say like, you know, with hearing loss, we're used to saying mild, moderate, severe, profound. And even with tinnitus, we have questionnaires that will kind of help us label it as such. Misophonia is a little bit more tricky. However, it's obvious when somebody needs help, you know, and it's obvious when it's severe. Um, so there are a lot of great questionnaires. I have my favorites. Um, but, and they're all accessible online and it's a great way to see, you know, they, they ask all the questions. The Sussex Misophonia scale is one of my favorites, but everybody kind of has a favorite who works in with this, and it's not the only one I use. Um, but I, but I like that one because it does have different, you know, subscales for emotional impact and avoidance and repulsion and, and things like that and pain. Um, another thing I always do LDL testing on my patients that come in, even for Misophonia, I always do an audiogram.
Lindsey: [00:36:20] I include LDL testing because so often we don't know that they actually have loudness hyperacusis in addition to the the misophonia. And when I have a patient that has both, most of the time I will treat the loudness hyperacusis before starting treatment on the Misophonia it's been a little bit more effective for my my practice to do it in that order. There are times when the misophonia is so destructive and so harmful that that we actually try to tackle that first. But that is one thing that I always do. You know, I'm I'm an audiologist at heart. And so I want to see what what else is going on in their the way their brain is processing loud sounds as well as how their brain is processing sounds they don't like. And a lot of times you get patients that come in and they'll say, you know, whenever I hear a helicopter, I get really angry. Okay, well, that's two different things that it could be that could be loudness hyperacusis because it might be the loudness that's just so loud. And then they get angry. But most likely it's both. They they have they're having a response to a loud sound and it's a very negative, physical, emotional response. And so, so the triggers helicopter. But they've got both. It's both of those things happening. So we kind of combine the therapies that way so that we can address both.
Lindsey: [00:37:52] Jeez, that one happened.
Lindsey: [00:37:53] That's really interesting is once you do overcome the misophonia the trigger. Um, let me give you an example. I had a patient who we, we got through. It took 12 weeks. And for most neurotypical people, 12 weeks is about average. Okay. That's a that's quite a while to everyday work practice something that. And what I tell patients is that 12 weeks is going to go by anyway, so you might as well improve your life in that 12 weeks. But I did have one patient. His trigger was hearing mouth noises through a microphone. So when you think I'm not going to make it the sound now because that would just anybody who may have that have misophonia would be triggered. And I hate doing that. Um, but we conquered that for him. He, he, he was very religious, a little cute. Eight year old kid, loved going to church, but he would just, just sit with his ears covered just in fear of that sound. And we got that sound. He overcame the sound so it didn't trigger him. It didn't give him the feeling of anger or rage or any of that when he heard it. But what happened? What was underlying that was a phonophobia. So he was going into fight or flight before, just out of fear of being in the presence of that sound, even though he'd overcome.
Lindsey: [00:39:23] That.
Lindsey: [00:39:24] Taking a trigger. So then we worked with the Phonophobia, the fear of being in the presence of that sound. And now he's great. He's great. So it's really just kind of this puzzle and unraveling this mystery. And every patient is different. And I love that. I love that. You know, it's it's you have to be very creative and think pediatric audiologists especially know that you have to be creative. And that's part of the fun. And that's part of the anxiety of it as well, is, you know, when something doesn't work and it's worked on so many other people, you have to you have to be like, okay, we're going to find something that works and we're going to figure this out. And you do. And there's so.
Lindsey: [00:40:03] Many. He did approach the patient who has who has misophonia that.
Lindsey: [00:40:12] There's always a solution. I feel that's that's one of my mottos is everything is figureoutable, right?
Carrie: [00:40:18] No, that's a great motto. But I know earlier we were kind of talking about, you know, there's a lot of not a lot, I should say a few OTS and a few psychologists and a few audiologists that really kind of specialize in misophonia. And just I know in our area, like the person that I was working with, their family was like, we've called around to like psychologists and different places. And we mentioned, you know, misophonia and they don't even know what we're talking about. Yeah. So I guess my question to you is I know you have like an online program, but what can people do if they don't have anyone that kind of specializes in there? Or do you have ways that people like to cope with everyday life?
Lindsey: [00:41:10] Well, they're definitely they can definitely look up ways to regulate the autonomic nervous system, but that is a coping technique that's not going to make the misophonia go away. So absolutely, I encourage, you know, researching different things that can help regulate the nervous system. And a lot of there's there's so much information out there on how to do that on YouTube, on Pinterest. You know, there are a lot of different techniques that you can do that are research based to help calm the central nervous system down after you've been triggered. So it's it's more of a bandaid than a fix. Right? But those are those are techniques I also teach my patients as we're going through those are also very important. And so if you're someone who has misophonia and you don't know where to go, there is nobody in your area and you're just trying to get through your day. Then definitely looking at ways to regulate your nervous system and trying different ways. I when I see my patients, I have give them 20 different types of ways that they can regulate their nervous system if they get triggered and they'll like some of them and they'll hate some some of them and all everybody's different. And that's why I give them like this huge bucket full of things that they can use.
Lindsey: [00:42:35] And we practice it in the clinic or, or virtually, if we're doing it virtually so that they can really have a tool to draw on in those moments when things are just really, really hard. And you know, it's really, really hard on, on our bodies, on our when our nervous system goes into that state and we can't get out of it, it's it's very traumatizing to our bodies. And and so that's my best recommendation as far as how to cope Now understanding that you really that's not going to eliminate the conditioned response in the the subconscious mind, in the brain, in the amygdala. You really have to to have somebody that knows what they're talking about. And this is this is where this is this is where the trouble lies. Right. Who knows what they're talking about? Yeah. And how do you find them? And this is this is why I created the online platform that I have, the sound immunity program. It's a coaching program. So, you know, audiologists know we can't we can't do telehealth. It's not a thing yet. Yeah. In most places. And so what I, what I, I got this idea from seeing other audiologists who had created tinnitus coaching programs and it allows a little bit more flexibility for people from all over the world to connect with you virtually to get coaching through their experience and to get guidance on on how to to get through this and and move past this.
Lindsey: [00:44:23] Now, of course, any type of program like that, it's a coaching program. You can't do any diagnostic testing. You can't make an official diagnosis. But there's still a lot that you can do for these people. And I now have patients from all over the world in all different time zones, and it's incredible. And I've also, um, created an online program that's kind of a self-paced program that has everything. So somebody who, you know, maybe is uncomfortable with the one on one face to face type thing, Um, we'll, you know, they can go through a course, a 12 week course, but they can do it at their own pace and then always go back to it and have that. And I felt that that was really important to to create because of exactly what you said. There's just not very many people that understand. And if you get someone that says, well, just wear headphones. Now you're going to make it worse.
Carrie: [00:45:20] And that was actually one of my next questions. I'm like headphones and no headphones. I think it um, yeah, it probably depends, but and where they're at in that process. But I know there's a lot of different answers for that.
Lindsey: [00:45:34] There are a lot of different answers and you know, headphones have their place. Noise reduction headphones have they have their place. And when I see so I've had patients or clients that come to me and they've worn headphones noise canceling headphones for seven years because their ABA therapist told them that that's what they needed to do to just to get through life, right? And so by the time they come to me, they have misophonia and such severe hyperacusis because they haven't gone anywhere in the world without these noise canceling headphones. And there is a way to still wear headphones. Noise canceling headphones without getting as much auditory deprivation and that is get headphones that will stream some sound in. So if you're going outside, so so if you know for these patients, I'm never going to say, nope, stop wearing your headphones because they will never be able. I mean, that's just it's that's too much. That's you can't do that. And so what I'll typically say is, okay, we're going to just try to reduce it like just a tiny little bit. We'll try, you know, try going, you know, holding the headphones out for ten seconds and then put them back, you know, and we start very, very slow. But another thing is, if you can stream some very soft white noise, pink noise, red noise, even some nature sounds, then at least their auditory system is getting, you know, a more broad range of stimulation and we're getting less of that auditory deprivation. Now for parents who, you know, they say, can we just use them for the fireworks or for. Of course, Yes. You know, you're not going to do damage. In fact, it's it's good to use them for those situations anytime, you know.
Lindsey: [00:47:24] But if you know, if it's just like a you're going to the kids museum and you're not far enough along in your therapy program to really be able to do it without your headphones, then wear your headphones if you can stream something to them even better. But I mean, the whole point is that we want to improve the quality of people's lives and so we don't want to take anything away from them. And when you're working with Misophonia and Hyperacusis and Phonophobia, it's a slow process and you have to be okay with that. If you're a professional that wants instant results or if you're a patient that wants instant results, you know, there is no instant thing that's just going to that's just going to help. And I wish there was. And you'll see ads on Facebook for things that say, if you have misophonia, this is what you need. And they they do have their place, right? Some of those things do have their place. But in reality, you want to avoid the use of headphones for noise cancellation purposes only as much as possible. And if you do need to use them, try to stream something to them. And there are a lot of great products on the market right now. Apple has some, Bose has some where you can still hear what's on the outside world, but then stream something that can kind of help your central nervous system. And then if there's a sound that's very bothersome, you can push a button and it can activate the noise reduction so that all you're hearing is the sound that's streaming, you know, to your ears. And so that's typically what I recommend to my patients who have worn headphones for a long time.
Carrie: [00:49:08] Okay. Yeah. Because I think being in the school system, especially working with some neurodiverse individuals too, there's a lot of headphones that are happening in a classroom and not that I've done any kind of misophonia questionnaires or anything with these kids, but it makes me think that they probably do have triggers. Yeah, absolutely sounds.
Lindsey: [00:49:33] And that's what's so hard is that as audiologists, we we know most of us know that by depriving the auditory system of sound, you're going to make hyperacusis loudness hyperacusis so much worse. I mean, it's, it's it's really it sounds counterintuitive, but when I see when I see parents or I'm talking to parents about these headphones being used all the time, you know, I say, really what we want to do is try to enrich the environment with with pleasant sound for as much of the time as we can. We don't want to deprive the ear of that that auditory system of hearing sound because then when you do your central nervous. System thinks this isn't right, this isn't safe, and then that's. So you're more likely to go into that fight flight freeze response. And that's just not what we want. We want just the opposite. So it seems counterintuitive to a lot of families, but we really, instead of taking sounds away in order to help the auditory system and the subconscious mind sort of get over this, we we want to put sounds in, put good sounds in and and strengthen the auditory system.
Carrie: [00:50:51] Yeah, that that's great. So overall, I feel like there's that Misophonia is definitely not cookie cutter at all. No. So and every individual is so different. So really like taking a deep dive into a questionnaire and case history and finding out more about what that patient is experiencing. And then like you said, it's a slow process that takes a long time and you can't expect to have quick results with it. Yeah. Is that thing so kind of wrapping up, I thought first, um, a couple of things. Did I miss anything like important as far as the question goes that you might want to think like our audience, you know, that kind of not to no pun intended, but like, it triggered your mind. Yeah. Did I miss something big that you're like, oh far Misophonia goes, This would be something I think we.
Lindsey: [00:51:57] Really talked about a lot of things. Um, I think it's important for as clinicians, as audiologists or as other type of professionals to, to be careful to stay within our scope of practice. And while I have trainings and I and I do things with my patients or with my clients through coaching, I know when something's out of my realm. I know if I've got somebody who really needs to be seeing a psychologist or a psychotherapist, we need to recognize that, you know, okay, now we need to this is out of sight of my scope of practice, and I feel like we really need to recognize that all professions, all professions do. And I and I feel like it's so important to be to have if you're going to work with with well, with any of it, with anybody. If you're going to work with anybody, you need to have a team of people that you know that you can work with together so that you know that patient or that client can really get the best results. And there have been times when I have gone through treatment with someone and we are not making progress. And it it appears that that they really do need more psychotherapy than they do sound therapy. And so I think admitting that is not wrong. It's honest and um, not trying to do something falsely or that you don't really know what you're doing, doing cognitive behavioral therapy. There are a lot of people who who audiologists within our scope of practice to do cognitive behavioral therapy with patients who have tinnitus and sound sensitivities.
Lindsey: [00:53:35] But you have to know how to do it. You can't just jump in and, you know, say, I'm going to give this a try. I'm going to give this a whirl. And so, you know, there's that. But then I guess the other thing just to wrap up is I think everybody is going to start seeing more and more about Misophonia and Phonophobia in the coming years, whatever that ends up being called or defined as, because even the definition isn't totally agreed on by different I mean, there's a whole committee, a consensus, a misophonia consensus committee to try to define what it even is and how to how to do all of this and how to treat it, how to, you know, do the intake, all of that. And that's great. But right now, we're still kind of in the beginning parts of this and there are a lot. There's a huge need. There are a lot of people that need help. And we're going to be hearing more and more about those in audiology and in psychology and in occupational therapy. So I think I'm excited. I can't wait. It seems like a new article comes out every every month and I just eat it up and I love it. And I think, I mean, even a year from now I may listen to all the things I said in this interview and think, Oh, well, that's okay. Now I have a better understanding of that. And oh, now I've changed, you know, just because.
Carrie: [00:55:01] Yeah, and that sounds like we're probably have to have another podcast because it is one of those like niches that we don't know enough yet. And as professionals, we know that what we believe today or what we know today, being a professional and getting more research may be different than what we do a year from now. And that's just keeping up with the literature and the research and being an ethical professional, right?
Lindsey: [00:55:30] Absolutely. Yep. That's perfectly stated.
Lindsey: [00:55:33] Yes.
Carrie: [00:55:34] So. Well, Lindsay, I cannot thank you enough for being part of the EmpowEAR Audiology podcast. I if our listeners have more questions for you, is there a good way to reach out to you?
Lindsey: [00:55:48] Sure they can go to. My email. It's a long one. I'm sorry. You know what?
Carrie: [00:55:54] I can put that in the show notes. I'll put the email in there. But can they? They can also visit your your guys's website, right?
Lindsey: [00:56:03] Yeah. So there's two websites. So we have one for our pediatric clinic which is little heroes hearing clinic.com or you can go to sound immunity.com and that's is is of course just for the sound sensitivity portion of what I do but I do free consultations or extended consultations. If somebody just wants to talk to me and try to get some ideas or try to to figure out what's best and so they can always schedule a free 15 minute consultation through sound immunity.com. And then we can kind of see if you know what some of the options are for them.
Carrie: [00:56:43] Okay. Well, thank you again for being a part of the EmpowEAR Audiology Podcast. It was such a great conversation and I'm sure our listeners will get so much new information as well as I hope that they reach out to you if they have a patient that they happen to be working with that has Misophonia and they need some different strategies and supports and therapies, they have a place to go to. Absolutely.
Lindsey: [00:57:11] I love talking to other audiologists and other professionals and kind of troubleshooting different cases, so please reach out to me. I love I obviously love to talk about this a lot.
Carrie: [00:57:22] So so I love hearing your passion in it because that's what we need is passionate professionals who are targeted in some of these areas. So thank you for all of that you do.
Lindsey: [00:57:36] Well, thank you. I really appreciate being here and letting my you letting me talk about all of this stuff that I just love to talk about.
Carrie: [00:57:46] All right. Well, thank you, listeners. If you love this podcast, please share it with others that you know so others can enjoy the EmpowEAR Audiology podcast.
Announcer: [00:57:57] This has been a production of the 3C Digital Media Network.
Episode 55: empowEAR Audiology - Thibault Duchemin (AVA)
Announcer: [00:00:00] Welcome to episode 55 of EmpowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the EmpowEARAudiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Hi, welcome to the EmpowEAR Audiology podcast. And before I dive in today, I wanted to take a minute to share a bio about today's guest. I have Thibault Duchemin with me today, who grew up in Paris, France as the only hearing person in a deaf family. Sign Language was his first language, and he experienced from a very early age the multiple challenges that deaf and hard of hearing people face in understanding and communicating with the rest of society. Helping his family navigate between the hearing and the deaf worlds led him to find Ava, a mobile based artificial intelligence that empowers people with hearing challenges by allowing them to converse in real time with family, friends and coworkers. Thibault holds a double masters of engineering from the University of Berkeley and Paris Tech, and in 2017, he was named a Forbes 30 under 30 in consumer technology and is a member of the Hearing Loss Association of America Board of Trustees. So thank you for being a guest today and the EmpowerEAR AudiologyPodcast.
Thibault: [00:02:02] Thank you for having me, Carrie. It's a pleasure.
Carrie: [00:02:05] Yeah, well, I thought we would start off with your background story, your personal family story, and how that kind of guided you into your life purpose.
Thibault: [00:02:16] Yeah. So as you mentioned, I, I basically sort of like navigated through my family. So from the very beginning, the deaf and the hearing world. Um, I remember I think being 7 or 8 years old and doing my first demonstration in France with my family, where we can have like groups of us all together and we're defending sign language as a, as a language to be recognized by society. Um, so my parents and my sister are deaf and I was not born deaf, but grew up with sign language and kind of like, you know, obviously always kind of been facing those kind of challenges. Um, you know, I was at home at the end of the day discussing, you know, school, discussing work and seeing in many different ways, shapes and form the ways that, you know, challenging situations arise, moments of miscommunication, even more frequent. And all of this kind of like, you know, obviously growing up, you want to fix something. So you start by answering the phone. You start by intermediating and interpreting in situations where it's hard to find an interpreter. Parents are, you know, speaking sign language mainly. And I was always there until the moment I was not there anymore and kind of moved to the US and where the question of how can I continue to be a good family member, a good CODA sort of arise. And it led to Ava being one of the solutions for all the CODAS out there who are interested in and still helping and supporting their family in empowerment and autonomy.
Carrie: [00:04:00] Wow. Yeah. Sometimes I think it's our the challenges that we have along the way that make us very creative in problem solving.
Thibault: [00:04:09] Definitely.
Carrie: [00:04:11] So there's do you have any other stories to share about your experiences as a family role of being a CODA that you wanted to share before we move on to some of the AVA technology?
Thibault: [00:04:29] Yeah. I mean, I think, you know, I think it will be weaved across the interview, you know, just because of the questions that usually touch very real life situations. And I tend to really bring personal life and and situations just as examples. So let's let's let's move on to different topics and then, you know, we'll probably bring some stories there.
Carrie: [00:04:54] Okay. That sounds good. Um, so I know that I watched your TED talk that you did back in July, I think 20th of 2017, and it was titled Don't Silence Your Anger. Find your purpose with it. That's a pretty strong and emotionally driven title. Can you share a little more about how that title came to be?
Thibault: [00:05:18] Yeah, it's a strong title. Um, I would say sometimes people are afraid of strong emotions for sure. And, you know, we live in a society that tends to mislabel anger or really sort of designate it as an emotion to be afraid of for a reason. I think, you know, acting from a place of of speed and rush the emotional state doesn't always yield to great outcomes. I'm talking about a different kind of anger. It is something that sits with you. That is maybe what I would say is the healthy part of the anger. It always gives us a signal, right? Like if there's anger, there's, um, maybe a frustration that is being built up. There's a series of things that we, we find unfair or unjust that should not happen. And I think of anger not about the outcome that is created on society, but more the reason why it's even there. And that's what I pay attention to. And that's why I encourage people to think over it and pay attention to, you know, a lot of advice out there is find your passion. I say find your anger. Look at what it tells you about what is really important for you now. Because, you know, when you think about passion, so much of our passion is influenced by the society around us, right? Like we think we should be passionate about a certain thing and a certain way of living. But anger is just yet another key to say my passion is and sometimes for some people it can really open up a lot of thoughts and self-awareness around this. For me, you know, growing up in a deaf family, a lot of times I would see, you know, my my dad coming back from work and really being frustrated because somebody younger got promoted to be his or her manager.
Thibault: [00:07:11] Right. So you basically have situations where, you know, deaf/har of hearing people are not always promoted to the roles that they should be. There's assumptions and preconceptions about what they can do and what they cannot do. So they don't even bring the deaf person into the decision. That was just something that really frustrated me very young at the very young age and growing up. It's like, you know, watching your own father just not really being this father model because of those problems, like lead you to say, hey, you know, what can be done about this? So this is a personal example, but I found it resonating with a lot of other people. Um, you know, people come to me and they say, Hey, you know, I've not thought about this lens almost because maybe they were afraid to think about it or they kind of like throw the the whole thing, the baby with the water, right? Like, they don't want to to think about anger this way or they're taught to repress it or sort of like get rid of it. But really what it is, it's a scream. It's a signal. It's something that's been, you know, done wrong to me or is not sort of fully sitting with me. And I want to examine it. I want to explore it, and I want to understand what it wants to tell me. It's the message.
Carrie: [00:08:21] Yeah. So you definitely were able to take that anger and funnel it into a purpose. Yeah. You.
Thibault: [00:08:31] Yeah. It's a powerful motivation, I would say, today. I still obviously have the anger when new situations arises that we cannot, you know, honestly, it's like it's the empathy part, right? It's like you hear someone's story and it's in your circle of control, and there's this anger that fuels me to think about how can we do better? What can be more of service to our users, our customers, people who don't know us yet, and acting in ways that are just unconscious and not very thoughtful towards staff helping people. What can we do better so that we can impose a different standard that is more accessible and inclusive? I'll give you an example. You know, during COVID, where everybody sort of switched to different online platforms, that sort of thing, people really, really, really left out in person with masks. It was very hard for them to navigate. I mean, you know, can you imagine like relying on lip reading and suddenly from day to the next, having to basically ask other people to either trade off their health or with this whole kind of psycho situation or, you know, it's kind of like nodding and not knowing what the person just told you. And, you know, even online in their own organization, not really having a say about the solutions that are being kind of imposed. And a lot of those solutions didn't have captions or even ability to ask for captioners or interpreters to kind of connect in the call.
Thibault: [00:09:59] So the usability and experience of deaf/hard of hearing people were just terribly terrible. And a lot of times it was kind of revealing, um, I would say power struggles and different levels of dynamics. And so for us, like seeing this and watching it because we have we had a lot of users and deaf people all across the US and Europe facing those situations, asking us for help, like it led us to develop a version of AVA that also works online. So it's a desktop and mobile based application, just an app, but without talking too much about the product, really what it is behind is that we just get a signal and we get like to be very close to what actually the state of society is. It reveals a lot of unfairness And you know, when you have a lot of this unfairness on your on your chest, it's like there's one constructive way and healthy way to solve it, which is to funnel it into a I would say, a long term project, something that can actually chip at the problem. And there's another way to kind of process it, which is to yell and, and you know, it's just not like be unrestful with it. So I think the challenge of like processing that anger is important. But once you do this, it is a very powerful driver and fuel of energy.
Carrie: [00:11:16] Yeah. I'm glad you have been able to use your anger to drive you to productivity in the in your AVA business. But before we talk about AVA, I know a lot of people have experienced captioning on some level, but I think there can be a lot of confusion too about the terminology of different captioning. So for the purpose of our listeners today, could you give a little cliffnotes version of the difference between what is a subtitle versus closed captioning and open captioning and live captioning? Are those different captioning things?
Thibault: [00:11:55] So there's a big bucket typists is a is also a thing stereotyping, you know, fast typing, typing captions. Look, we live in a world where captions are everywhere now actually more than it was five years ago. And this is good. We have multiple senses and sometimes hearing is not always going to be there, no matter if we're deaf, hard of hearing or hearing. And captions are really are the visual way to transmit information. You know, obviously this is when you don't speak a visual language like sign language, but that's most of the world that is in this situation. And so that's why caption is really, you know, serving everybody who can see and who can read. Um, and I think, you know, captions capture the the, you know this whole job or purpose of transmitting the information with with text with language you know subtitles specifically is about like a prerecorded audio or video that you basically going to sort of like create the captions for. Um, and the file is basically subtitle and subtitling is basically taking something that is prerecorded already existing and adding captions to it. Um, the live captioning is when you do this online and you know, live, you know, where you don't have any sort of like weight or sort of delay between the moment it's being said and the moment you're captioning it to do live captioning.
Thibault: [00:13:29] You basically have multiplicity of technologies. Value typing means quick type in Latin and you know what that means is basically trying to go fast to type and caption You have broadcast captioning, you have stereotyping where you basically use shorthands to type faster and that's usually used in trials and the law just because of the sheer amount of of those situations that calligraphy is also a way to go faster. So there's this multiplicity of situations. We wanted to also simplify this by using the word scribe, by basically sort of saying, hey, you know, instead of kind of naming or having to choose between all of these different jobs, like let us introduce scribe captions, which are basically for us, like another process of creating captions that is being done live and is being done in awareness of the other person who is reading. So a scribe may have more information about the user and the person watching than typical captioners. And this is really kind of reconnecting us to the older, you know, function in ___ where you had this intermediary between people who didn't know how to read and people who use the the writing, the written language. So we see scribes as more intermediaries and we use scribe captions, which is this professional 99% accurate in in real time technology that is based both on AI and on human accuracy.
Thibault: [00:14:59] Okay.
Carrie: [00:15:00] Yeah. There's so much out there and I agree the last five years has been a big boost. I think COVID helped some of that because a lot of people were like what you were saying, the deaf and hard of hearing community was kind of cut off. And for accessibility purposes, I feel like that really helped in that sense because people were angry about it and wanted something done.
Thibault: [00:15:25] Yes, petitions were made. I mean, we had just an explosion in people using our app and really sort of giving us feedback and then building with them different situations like the scribe service, the ability to use AVA online for Zoom meetings and and meet people where basically saying, Hey, I'm on this platform that, you know, is using this language or basically is in this software is a company software. I cannot, you know, sort of follow what's being spoken about. And we always had this approach of don't make more problems by creating solutions. I think sometimes people complexify what should should happen. So AVA is basically working on top of any situation or any conversation. So you don't need to sort of have an integration for a specific software. It is platform independent. Which kind of like helps you be autonomous. You come into a conversation that'd be online or in person meeting, and you basically have your own solution that will provide you basic level of understanding and expression. So it goes in both ways. And too often I have this situation where even today people use tools like we have the, you know, the captioning tool on Zoom. It's it's great. But the problem is what happens if what I'm saying or what is being printed on the screen is not correct. I have no way to correct it. If I want to answer something and I'm nonverbal and I'm deaf signing, right, I'm going to type in a chat so people can read it. But if you've actually been in a meeting, people are pretty quick at following and the audio space, they don't really look at the chat in real time. So as a deaf person, I'm going to be disadvantaged. So we basically built a series of tool to really help, you know, true integration and inclusion versus like basic compliance, which is accessibility. We go a bit further by just saying, Hey, how do we invest in autonomy? And I think that's kind of the direction of, of the captioning, sort of like state of the art today.
Carrie: [00:17:26] So kind of taking like maybe a little step back. I know you said the anger kind of fueled you to think about this as the purpose or a project that you are going to do. But how did you actually get started? I know you had the idea for AVA, but can you kind of back up and just kind of share how everything did get started?
Thibault: [00:17:50] Yeah, absolutely. Um, well, I think this is a process of building a company is first, you know, building a team around an idea and motivation. We've been always set on making the world more accessible for 450 million people, it's going even to 750 million over the next 20 years. So. The very early stage was a few encounters. You know, I come from a deaf world, like using sign language as a first language. I met a lot of deaf and hard of hearing people on campus in Berkeley where I got started. And at this time, it was really a time of, you know, a lot of hope, a lot of excitement about technology. And maybe at this point we didn't have. A lot of like sort of pessimistic views. So for me, it was really interesting to be at the forefront of machine learning technologies and in the same time, coming from a deaf or hard of hearing background, it's like knowing that this also technology is not often, you know, dictated. Like therefore I think people receive the developments of technology, but they don't get usually to participate in building those technologies. So for me, it was really, really important to, you know, have a say there. I had a sister at the time who was studying law and basically told me like, hey, you know, if I want to be a lawyer, there's no deaf lawyer in France, so how am I going to do? And so one of her first project very early on was to to actually kind of build a glove, a physical glove, to translate sign language.
Thibault: [00:19:25] This is something has been done over the years. You may have seen some videos. It's it got us started. And I would say unlike maybe 99% of the other teams who try to do this, we continued around the mission because in the end, it's like while the glove was maybe not the right form, there was something in there which was the immense pain and difficulties of integration in society of a lot of people. Not everybody. Some people are just very well integrated, autonomous and happy. But there was a really strong driver for us to work on accessibility. And what we noticed is that it was harder, specifically even in the US, we're supposed to be, you know, ADA accessible with a lot of structures. It's just felt that deaf people were still, you know, having difficulties in social situations and specifically group conversations. And when you think about it, it makes sense. You start seeing, you know, multiple people at a dinner table, right? And even a cocktail party situation. People speak. It gets loud in the background. It's like conversations. So sounds can be bouncing. There might be music in the background, right? Like all those deliciously horrible situations that we remember and and it makes it very tough to be in a situation where you're just like, just met someone. So that person may have an accent myself, have an accent, they have a message. And it's like all this thing that just actually how we meet new people, make new friends.
Thibault: [00:20:51] And so if this is not accessible, then it is really hard for a category of the population to make new friends, create professional opportunities. You know, it can happen in some structures like at work, but what about this happenstance, spontaneous thing? The best example is like me. And you know, here I'm bringing some personal stories, but me being next to my mom going shopping and really people going to her and asking her for directions, you know, like how many times can you just, you know, start a discussion with a stranger when someone asks you for a direction many times. Right. But when you're deaf hard of hearing, it can be harder. Much harder. Like my mom used to kind of answer like, hey, I don't hear now. She uses Ava, like she puts up her phone, her app and then says, Wait a moment. And then it captions what the other person says. And she can give that that part of kind of like being a great citizen, being a great member of society. So I think this socialization aspect for us felt the first domino work on this massive problem, you know, because in the end, it's very it's not a technology problem only. It is a full stack problem that requires a full stack solution. So it has multiple components. It's like how like how much patience we have when we are accommodating someone, how much attention we give to like undivided attention to somebody else in 1 to 1 coffee meeting versus in a group conversation.
Thibault: [00:22:14] I don't get as much presence with every guest, especially if one is deaf hard of hearing, right? So it's all those subtleties where it looked very important for us to work on this problem. We met a lady called Alma who told us that within her own family it was very hard for her to just follow a normal dinner table situation. And I felt very moved by this because in my own family, you know, I always had vivid and rich dinner conversations in sign language. But to be in your own sort of like circle and intimate circle and not having easiness to understand what other people say, that just struck me. And I think from there we really felt like this is something that is worth spending a lot of time trying to figure out how to make better. It turns out that the technology we needed didn't exist at the time, so we were foolish enough to actually say, Hey, we might actually solve it. We talked to the founders of Siri, Shazam, of Google speech as well, and we actually really, you know, made a dent in this. Like we I'm proud to say we were the first company and we still are to provide a group conversation based captioning, which does help a lot of deaf people like face the Thanksgiving dinner syndrome, the situation where a lot of people speak. But we went much beyond this. We just started with this first domino and a lot of others fell as. Consequence of this action.
Carrie: [00:23:39] Yeah. Would have to agree that having individuals and individual people who have experienced the communication challenges firsthand gives you so much more insight into what needs to go into accessibility and programs.
Thibault: [00:23:58] Yeah, and it is an opening, right? It is a first foray in as many ways to approach problems in accessibility. Some people say, Hey, there's a lack of interpreters, let's train more, let's make the scheduling easier. Other people say, hey, you know, let's automate sign language. Other people say, hey, let's, you know, put captions on TV to be better on movies. I think there's a moment where as an entrepreneur, you have to really diagnose and think what is really the first domino and think first principles. You know, my my dream would have been to kind of help on the issues with accessibility. Like I would love everywhere to have an interpreter 24/7 but just cost twice. It's very complicated, right? And in terms of training, it takes time. So there was this way that we could solve and make first steps towards accessibility issues, and that's the way we took in. That brings us now to our hundreds of thousands of people using the app every day.
Carrie: [00:24:55] Yeah, which kind of is a great seque into, you know, you've talked a little bit about AVA and being able to be used, you know, for a group situations and for work and things like that. But can you just maybe dive a little bit deeper into how that is set up and how somebody might utilize that?
Thibault: [00:25:19] Yeah, the key thing is simplicity. You download the app, you go on the website If you need to just be on a Zoom call or Google meet call and you need captions to be your formats and you need to be able to answer and be heard. So you basically download it, create an account and this account is free and this helps you have access to our captions unlimitedly. So you don't have to pay to have captions. Nobody, nobody should have to pay for accessibility. It's really our belief. Now there are situations where your own company, your own school, basically if your students may, you know, have a say and a responsibility in this accessibility. So it's basically, you know, you think about society, not everything all the burden should be on the individual. So we basically propose premium plans like pro plans that are meant to be financed and funded by the organizations you a member of. If you retire, there's a community plan that basically gives you a bit more advanced functions. And those functions could be translation, could be a higher level of captioning that is more adapted to professional settings where you can customize vocabulary, things like this. And this is so that we can create a cross funded model. So basically people who have, you know, a job and a school that can pay for it can basically finance partly obviously like in a lower a lower capacity accessibility and captions for the other people. And I think this is maybe the socialist aspect of being from France. It is really important to think about like accessibility as a common good that we all own and as a community, as a developing community, it is possible to support the captioning of the other members of the community.
Thibault: [00:27:08] You don't always need to do like the fund where the hearing people contribute to it. But when you get your school and your job and your company to provide for it, you know the right level of captions, then you basically in the same time ask for a little contribution for everybody. And that's kind of the same principle for you. It's free. And the point of it is to be always free. And for employers and for schools, they can pay for both the AI version. So that means the automated captions and on top of it the human provided captions too. So this is in the domain of captions. We don't provide interpreters, but we provide captioner which often are good, either complimentary solution or a full solution for people who are deaf or hard of hearing. It could be in a pinch. You don't have time to kind of schedule an interpreter. You can have get captions with our scribe service within 30 seconds in business hours. So that's quite incredible, right? Like I've seen a lot of people wait for weeks or having trouble scheduling a captioner or maybe somebody like cancels last minute. This is very much of a of a great solution for people even who already think they have all the tools. This can actually sort of be really great in a pinch to.
Carrie: [00:28:21] Mm. Yeah, that's a great way to have access quick and to know where to get it. And kind of thinking about it from, you talked a little bit about schools and things like that, but in my job I work with a lot of teenagers who are thinking about going to college or university and may have difficulty in their classes. How did that look for a college or even a high school kind of setup?
Thibault: [00:28:50] Yeah. So college and high school are, you know, hybrid environments. You may have classes online, you may have classes in person. Let's assume there's a variety of situations like amphitheater style and then small class, I would say like, you know, group project style, where, you know, you maybe are like 10 to 15 people around the teacher. So in person, mobile app and computer could be useful online. The computer this helps you basically have captions where the action happens. So when you're in class, we basically, you know, either you're in a small situation, small class and the sound is good and you basically get captions on the computer. So you open our desktop version and the sound basically just goes through into your computer and captions what's being said. You can click in one click, you know, schedule scribes for any of the classes you have upcoming, and then they will show up at the time the class start to make sure there's no like fractions situations where an hour just comes up and you just don't know what the teacher said. So this is, you know, very easy to use in class when you're in an amphitheater and then the voice of the teacher might be a bit further. We actually got your back as well. But you're going to need to get closer to where the person is speaking. So either you go in the first row or you actually connect a simple Bluetooth microphones.
Thibault: [00:30:22] We provide some Bluetooth microphones that range from $30 the units to maybe $100. If you want the higher end quality, you can get your administration or city managers to pay for it. But basically you just go to the teacher and you just, you know, put the microphones either on their lap, on the like as a Clipper microphone or just like in a in a desk next to them if they're kind of stationary. So that helps them just very easily without having to do anything with their phone or mobile app be captured in terms of audio. And you can just get the captions of what is being said in the same time the scribe, which just remind you guys is a is a physical person who's going to be remotely listening to the conversation and captioning it and editing in real time. This person is going to make sure that the accuracy is really high and they're going to hear better through the microphone that you may have next to a teacher. So this is a situation that is a very class oriented situation, but obviously AVA is very useful outside of it. So you may have a cafeteria lunch where you basically discussing with someone and, you know, it might be just a one on one situation. You just put your phone next to you as you're eating and then while you're kind of eating your plate and looking at the person speaking, you can glance over to the screen of the mobile phone to see what you missed.
Thibault: [00:31:38] And this is a very, you know, hands off situation, right? Like you don't need to hold it or anything. It should work. Now when there's 3 or 4 people around the table, I'm really going in the full situation. But that's really those key moments. You actually just show a simple QR code and classmates, even people you don't know who are at the table can basically use a simple camera to scan the QR code and be connected to the conversation without having to download the app. So really, it's just, you know, the same way as we've been ordering during COVID in restaurants. It's just you scan a QR code, it opens a web page, and then what they say is going to appear with their own color on your phone. And I think, you know, that's such a lifesaver. You don't have to sit alone in, you know, cafeteria anymore. You don't have to kind of like nod. And you didn't really understand what your classmate talked about. And I think that's those moments are very formative when you kind of like go to college or even when you're starting university, maybe even the first year. That's where you make friends. That's the first domino where also to make sure it's correctly accommodated for.
Carrie: [00:32:42] Yeah. And so when you were talking about the QR codes and everybody kind of like scanning it, so that does that then make their phone a microphone as well. So it picks up their voices. Okay. Exactly.
Thibault: [00:32:55] So there's one thing that I'll just say very short. It's you are autonomous, you have your own app and you might pick up pretty well, even if there's a lot of background noise and people speaking far away from you. But don't settle for 80 or 90% accuracy, you can boost it by simply sharing to another person at your table. Hey, if you scan your microphone, I'll be able to understand better what you say. How about we do this? That takes 30 seconds, even less. And then this also allows them to be helpful and to accommodate you. And it's not so much of a friction. You may disclose that you have hearing loss in this situation. So this is something that is completely optional. But I would say everybody, even the young people, now use captions for TikTok for Instagram. So why wouldn't they use caption for a conversation with you in person on top of it? It's just cool. It's a new technology, you basically being a super human, having like new ways to to understand the conversation like this. And if you don't want to record it or have it, every trace of it, you can always delete it or choose to not record the information too. So this makes it very private, secure and great for teenagers as well.
Carrie: [00:34:10] Yeah. No, I'm going to have my teenagers try that out at our we have a group meeting or a peer mentorship meeting, and I'm sure they would love to experiment with that and then possibly use it in their everyday life as well. One other topic that I thought we should touch on would be health care and accessibility too, because I think it's important to recognize that every deaf and hard of hearing person does require different accommodations and supports, and we should be asking what they prefer before an appointment. And I don't think that always happens. But yeah. What is your experience been with working with health care facilities to help them be more ready to accommodate different individuals?
Thibault: [00:35:05] Yeah. Let me actually ask you if you care to share, what has been your experience going and I guess it's not the same in your practice versus outside, but what has been your experience on accessibility? And I'd love to talk about mine as well.
Carrie: [00:35:20] What has been my experiences. Yeah. So honestly, it was interesting. I was thinking about this the other day about how unaccessible our, my cochlear implant surgery was because I was in obviously a situation where I wasn't able to hear because I was going in for cochlear implant surgery and everybody had mask on and it was still, you know, right after COVID or I mean, COVID was still happening. So there was, it was very much, um, restricted as far as, you know, not, not being able to see. And I was thinking, wow, it we, they weren't set up at all to have accessibility. And so, you know, in my situation, my husband was my my ears and but they're saying a lot of important medical information to that. He wasn't getting all of that because it's so much coming at you. And so, yeah, it made me think, like as an audiologist, I mean, I work in the schools, but audiologists don't always doing a good job in their own private or clinical practice to make accessibility something, um, just common, I guess I should say that expected, you.
Thibault: [00:36:51] Know, and that's even crazy because you're going for, you know, hearing related surgery and had no accessibility. So the standard today, the state of the art even in the US where I believe the healthcare expenses are the highest, you know, per person. So even in the US, you just have this subpar experience in one of the most stressful situations. And. That's going to change. That's going to really, really change. It tells so much about how unprioritized deaf/hard of hearing people have been and about how in the end it's really down to a question of costs and ability. It's like, you know, probably people don't want to ask the question of how you want to be accommodated because they just don't have the budget for it. If they don't have the budget because the voice of deaf people have not been really heard to fight for decent budget for it. And, you know, it's not to kind of denigrate all the existing policies. They're just not enough. And I think everybody can agree to this. It's they're not enough to just think that you're going to magically provide all the needs and cater to the needs there. You have a lot of deaf/hard of hearing people who are basically coming with a family member, you know, and that's what you did, right.
Thibault: [00:38:06] And so it's like so interesting to see how broken this is. And like, you know, we're not just a health care accessibility company. We are a full sociFinpatient care situation. So there's a few institutions that we're working with, some in France, some in the US, where basically a deaf/hard of hearing experience will be 24 over seven accessible in a hospital. And that is so exciting because that's the future. That's what it should be. It's like.com for a first outpatient experience. Maybe they go to the help desk. The help desk will have a QR code, but this happens today. Already in some places you have this QR code and then the patient basically scan it and then there's a conversation happening with the person at the help desk. Then they know they can download this app that they will use for the rest of the medical staff because sometimes the staff is not equipped or doesn't know about this app. Of course, sometimes it's the first time they discovering somebody who is deaf hard of hearing. But you will have this app that is provided and supported by the institution, right? And we believe this to be the right approach. It's a balance between you bringing what you need, but also the institutions of being equipped. So there's a dance between accessibility and autonomy.
Carrie: [00:40:27] Yeah. And I think that if especially in the field of speech and hearing or audiology or ENT this should just be something that would be available and just on. And we should be asking each one of our patients like would you like to have captioning turned on? And by downloading the AVA app onto an iPad, they could have it accessible within moments.
Thibault: [00:41:00] And what's interesting is that for everyone who says that they had a terrible experience at the hospital, this can end now. And there's two levels of accessibility, right? There's one that is accessibility you bring yourself. Right? It's like when you bring your husband, when you bring like a friend to help the translation, like this is not perfect accessibility, but this is a working accessibility. Obviously this is not to encourage and to kind of call the gold standard. AVA is the same. It's like you bring your captioner with you to make sure this is working for you and on top of it you can, if you want, pay for a scribe, which is a professional captioner to make sure that whatever is coming out of the tool is not AI fully. If you really need a super high quality situation in this situation now, if you come to this hospital, it might be that if you're recurring patient or as you go and then people realize that you're using technologies to accommodate the conversations, they actually will equip themselves with a good standard of accessibility. And that might take more time, which is understandable. But in the same time, it is doable today to solve most of your accessibility issues. And I think a lot of people have a hard time realizing that the day to day can change instantly.
Carrie: [00:42:21] Yeah, no, I hope people who are listening today, if they take one thing from this, is that they have the access and the tools right in front of them in order to do something better for their patients and individuals that they see every day in their those that were.
Thibault: [00:42:41] Thought for them. And from that perspective, the device, I would say the deaf hard of hearing eyes.
Thibault: [00:42:49] Yeah.
Carrie: [00:42:50] So this was a great conversation. But is there anything that I didn't ask you that you would like to share? That I missed.
Thibault: [00:42:59] Well, I mean, I think there's a there's a lot of topics we could talk about. But I think the you know, overall, the idea is that change is now and is in your hands. And there's a time for complaining and saying how broken things are and there's a time for getting your hands dirty and actually giving it a try to all the things that are being sort of created around you. Um, but now what works for other people may not work for you and where other people have stopped at and it could be a situation where people just feel content with, you know, simple automated solutions. You can actually get the flexibility you deserve and you want. And this is really something that, you know, we find ourselves, as I would say, accessibility professionals like you are as well. Um, always playing the role of coaching and helping people feel confident and secure in the society that they didn't really let them feel this way or didn't make it easier. And sometimes they do, and they teach us a lot. But part of our work is also to say, No, you can do it, you can be autonomous yourself. You can take back the reins of your own accessibility and and actually make it happen.
Thibault: [00:44:12] And when you do this fight and this advocacy, I might say other people will thank you because you've made this, you know, hospital that you went to a few times accessible by just raising your voice, being sure you were loud and clear. When you say I need accessibility. So my only last word would be around. Advocacy is self advocacy is absolutely paramount. It doesn't have to be boring. It doesn't have to be, you know, a wall of issues. You can make it sexy. You can make it easy. You can show to people that advocacy is not you telling, hey, you're not being legal and not being compliant, not always sort of bringing the stick. Of course, this is in the backdrop. The stick is important, but you can also also bring the carrot and you can say this is something you can solve easily and we can end today if we just have a bit of a motivation to do so. And so that's what AVA is audio visual accessibility. It's near. It's in your hands. When you download the app and we help you get there.
Carrie: [00:45:13] Well, that was a great way to close our conversation today, and I really appreciate you being a guest and in the show notes, I will link the AVA website so people can link to that and explore all of the different options that you have. And like you said, they can go to wherever they download their apps and find the easy.
Thibault: [00:45:35] Yeah.
Carrie: [00:45:36] Yes. And I also link to TED Talk because I thought the TED talk was just amazing as it went back into your backstory and how you really got to the point of making a difference and actually getting action out of your anger, I guess, in that sense and putting it to good work. So again, thank you for being a guest today. Listener Thank you for listening and please share the EmpowerEAR AudiologyAV podcast with anyone that you think this would be helpful for and we look forward to you coming back with our next episode.
Announcer: [00:46:13] And this has been a production of the 3C Digital Media Network.
Episode 54: empowEAR Audiology - Donna Sorkin
Announcer: [00:00:00] Welcome to episode 54 of Empower Audiology with Dr. Carrie Spangler.
[00:00:15] Welcome to the empowEAR Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler, a passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today, and let's get started with today's episode. Before we get into today's episode, I would like to share a little background about today's guest. I have Donna Sorkin with me today, and she is the executive director of the American Cochlear Implant Alliance, which is a national organization devoted to expanding access to cochlear implantation for all who may benefit. She has a long career in advocacy for people with hearing loss at for profit and nonprofit entities. She has had a cochlear implant for over 30 years and brings a personal experience and enthusiasm to her work in the field. She was previously the executive director of two organizations Hearing Loss Association of America, which is an organization mainly for adults, and the Alexander Graham Bell Association for the Deaf and Hard of Hearing with a focus on children. Ms. Sorkin has served for 11 years as vice President, vice president of consumer Affairs at Cochlear Americas, where she led public policy initiatives and other activities aimed at the broad life needs of cochlear implant users, including insurance coverage, habilitation for children and adults, and educational needs of children with cochlear implants. She has served on federal, corporate, and university boards, including the US Access Board, which she was a presidential appointee and the National Institute on Deafness, which is part of the National Institute of Health Advisory Boards. She holds a master's in public policy from the Kennedy School of Government from Harvard University. So, Donna, thank you again for being a guest. And I'm so honored to have you today.
Donna: [00:02:37] It's great to be with you, Carrie. I'm honored to be part of your program.
Carrie: [00:02:43] Well, I was trying to figure out when we met Donna, and I feel like it was a conference many years ago and we had dinner. And I want to say it might have been with another Donna. With Donna Smiley. Do you remember that?
Donna: [00:03:00] Yeah, I remember when I met you. I think it was actually with Cheryl DeConde Johnson.
Carrie: [00:03:05] Oh, it might have been.
Donna: [00:03:06] You're right that it was at it was at another meeting. And I remember eating outdoors with you. That's what I remember about it. And I can't remember what what conference it was, but that's definitely when we met and Cheryl introduced us. And so I've known you ever since and admired your your contributions and the way you support children and enhance what all of us know about hearing loss and growing up with hearing loss.
Carrie: [00:03:39] Well, thank you. I'm so honored to have you today. I wanted to take a deeper dive into a couple of topics with you because you have such a wealth of knowledge. And first, I want our audience to be able to hear a little bit more about your personal journey of getting a cochlear implant, because I feel these stories are important to share for our listeners who may be considering this path or even professionals who are guiding our patients. And then I also, after we kind of talk about your personal experience, we'd love to take a deeper dive into your professional experiences with the American Cochlear Implant Alliance. So how does that sound?
Donna: [00:04:19] That sounds perfect.
Carrie: [00:04:21] Alright. So do you want to start a little bit about your personal hearing journey and how that started for you?
Donna: [00:04:28] Sure. Um, actually, my experience with hearing loss started before I noticed that I had a hearing loss because I come from a family of people who were hard of hearing. That's what we used to always call it. We would say somebody was hard of hearing even if they were audiologically deaf. And so my paternal grandmother was quite deaf, you know, and and and in those days, the the amplification was a big box that she would wear inside of her shirt with a, you know, a lot of wires. And I don't know what her audiogram looked like. I just know that in the time that I knew her, she really didn't communicate very well. And we we sort of ignored my grandmother. It was it was kind of sad and and she was a wonderful cook. And she would busy herself in the kitchen, you know, cooking for us. And then growing up, my father's hearing deteriorated. And I do have his audiograms. So I, I know that he had a, a moderate to profound hearing loss and, and probably would have been a candidate for a cochlear implant. He he wore hearing aids the entire time that I remember him. So I grew up with with having experienced that and in two important adults in my life. My dad ended up Having to retire when he was 52 years old because he couldn't do his job anymore. And that was prior to the ADA. So there were no accommodations for him. He was an economist and he worked for the Department of Defense. And part of his job was to go to congressional hearings and present the budget needs for the Department of Defense to the Hill, to Congress people. And it became extremely difficult. And I have to imagine traumatic for him to do that because he was less and less able to hear what was going on. There was, you know, no assistive listening devices, no captioning, no accommodations for somebody at that time. And so he he retired. And at the time, this is actually kind of an interesting anecdote that I just thought to share because it shows how much things have changed or maybe not changed. At the time, we all thought he was retiring because he had previously had a heart attack and we thought that he was was concerned about his blood pressure and the demands of his job and that that's why he had retired on a medical disability at age 52.
Donna: [00:07:34] And it wasn't until much later, until after his death that my mother shared with me that the reason that he had, in fact, retired was that he couldn't hear and he never wanted to discuss that with anyone. And so we didn't realize, you know, what was going on. And when I when I found that out from from my mother, I shared it with my sister and my husband. And I said, you know, why did you think Daddy retired? And they they all said the same thing. Oh, because of his heart related issues. So although they didn't specifically say that to us, it was what we took away. And so it was a measure of his embarrassment, his unwillingness to talk about his hearing loss and how it affected his life and in very important ways. And he always was proactive. He you know, he was always he always wore hearing aids. He always tried to hear the best that he could. But he was limited both by the technology at the time, which, of course, is improved and by the fact that he did have a profound loss. So that's how that's what I grew up with. And I was actually tested in elementary school. We used to test children regularly in elementary school, and we used to test out to 8000, which we don't do anymore. So in, in when they when I was tested in elementary school, I would be normal through 4000. And then they would pick up a hearing loss after 4000. And so I had I that's what I grew up with. And in those days, we didn't think about that kind of hearing loss. We didn't we didn't do anything for a child. So I would, you know, just went on my merry way and no one really said anything to me about it. And then when I was probably in college, I started to have more difficulty hearing and I would always place myself at the front of the classroom, at large lectures. And then when I started to be in the workplace, I started to have more difficulty. And I remember one of the places where I worked. They were really nice about, you know, what do you need, what do you need?
Donna: [00:10:13] And so they gave me an amplified phone. Um, someone that I really liked, used to take notes for me at a meeting to make sure I didn't miss anything. Um, and then this was before I got into this field and I was working in public policy issues, and I was often giving talks to large audiences. And so I had tricks, you know, And one of my tricks was I would get off the podium and walk into the audience to take questions so that I could see and hear the person asking the questions. And people thought it was really very interactive and oh, she has a great style of presenting and interacting with people. Um, but I was really just getting close enough to be able to respond to questions appropriately so, So that's what I used to do. And then, you know.
Carrie: [00:11:09] Just for one second, at this point in time, did you have hearing aids or when did you actually get hearing aids or you were still navigating and coping at this point?
Donna: [00:11:21] Not yet. Probably a little bit after that. Um, I, I bit after that I got hearing aids and I actually started to use an FM system which was actually in meetings and stuff was the most helpful for me or in a noisy place, you know, I would put a FM mic on someone to help me hear so that that was something I would do and I knew where to place myself in the room. So I was doing some things. And, um, honestly, this was before digital hearing aids. So I was using analog hearing aids and I had a very steeply sloping audiogram and it very difficult to fit. Um, and I also never did well with loud noise. And so I honestly tried to use hearing aids but did not get much benefit from them. And it was painful for me, you know, because I'm using these, these analog hearing aids with a very steeply sloping audiogram. Um. So not not much benefit. And so I was you know, I was really I was really struggling. And I didn't I didn't know what I was going to do, whether I'd be able to continue to work. And so this was around 1992. And so my wonderful audiologist at the time who I've spoken about many times, her name is Susan, and she's still practices in Rockville, Maryland. She was my audiologist and she said to me, Donna, I've done everything I can for you and you're still not doing very well. And I would like you to just explore a cochlear implant. And she gave me the names of some patients of hers that had gotten a cochlear implant. So she gave me just a very gentle nudge, you know, go, go look at this. And she did it just right. You know, it's just it's just what you want someone to do. You don't want to be aggressive about it. You don't want to say you're at the end of the line. You know, you just want to say you're not doing as well as I think you could do. And so that's what she did. And and so then I had actually a really wonderful internist. And remember, this is before the Internet where we could go in and find out where to go before the American Cochlear Implant Alliance and where you could go on our website and figure out where there were clinics that did this.
Donna: [00:14:15] So my internist did the research for me. What a great team I have. I had a great audiologist and a great internist. And so he figured out where to go. And I was living and still am living outside of Washington DC. And the place you went at that time was Johns Hopkins. You know, that was the main clinic in the in the region, in fact, the only clinic in the region. And so he he called he talked to them and he said, okay, this is where you're this is where you need to go to get evaluated. So that's what I did. And that was in October of 1992. And when they tested me, you know, you're always tested and best aided condition then and now. So that means with your hearing aids on um, I, I was able to understand 4% of words and sentences which is guessing. 4%. Right. That was pure guessing. Yeah. So, so what that meant was, if I couldn't see your face and I was so very good lip reader, I didn't know what you were saying. And I obviously couldn't use the phone. And life was pretty difficult for me. So I went forward very quickly, my first appointments mid-October, and I had my surgery on December 1st. Wow. Yeah, I moved really fast because because I had decided once I saw people who had them and realized how well people could do with them, I decided, why wait? You know, so and at the same time, I was taking I had been selected for the to be the executive director of what was then called self-help for hard of hearing people. But it's now Hearing Loss Association of America. So I did those two things at the same time. I started my new job on January 4th and was activated with my CI on December 21st after having my surgery on December 1st and we were building a house. Oh my goodness. That is a lot going on at once. A lot. Going on. Oh good stuff. It was all good. So thinking about.
Carrie: [00:16:35] So you said December 21st you were activated then, is that correct? Yeah. And so what was that like as far as adjusting from a kind of somewhat using a hearing aid or a hearing aids to getting a cochlear implant and getting activated at that time?
Donna: [00:16:53] Yeah. So, you know, right away what it gave me was sound awareness, which I didn't have before, you know, So the clarity wasn't there yet. Um, and things sounded a little bit off, you know, I recall things seeming. Um, out of sync. You know that what what would see on the lips was different from what I was hearing. But my husband right away remarked that he could just start talking and I would look at him, and in the past he'd have to tap me to get me to look at him when he talked. So that was that was a benefit right away. And I, I started to be able to have much more assistance with lipreading. I was still lipreading at that point, of course. Um, but it was, it was much I was getting much more out of what people were saying. It wasn't so hard and I didn't have to get repeats, you know. And my mother remarked, um, when I came home from my activation, she came over and we were sitting on the couch talking and she started to cry. And and I said, Well, you know, why are you crying? And she said, I just never thought it would work. I didn't believe it would do this. You know, she she noticed right away that it was much easier for me to understand what people, what she was saying and that I didn't have to get repeats.
Donna: [00:18:33] And it was it was So that part was different right away, you know, that I just had more support for lipreading and then then over time. You know, And none of this happens immediately. Not now, not then, but over time. Everything just fell into place. And by the time I got a second sound processor, it was at the time when all of the technology was evolving quite rapidly and improving. So my first sound processor was a box, you know, as was my second. My second one was too, but the second one had much improved sound processing capabilities and it huge difference for me. And within two weeks I could talk on the phone, which I which I had not really been able to do with, without a lot of, you know, support and stuff. So, so what that meant was I could understand speech without seeing your lips. And that happened with, with the change in, in the external processor, really important message for anybody that's thinking about this or thinking about it for a family member that the improvements that occur in this technology mostly happen on the outside. You know, And so in the time that I've had this, which is 30 years, I've had seven sound processors.
Donna: [00:20:14] Wow.
Carrie: [00:20:15] And I'm sure everyone brings. New.
Carrie: [00:20:20] Bells and whistles and ability to improve hearing in different situations. But is there any switch that you were like, Oh my gosh, this is kind of a big, you know, game changer for me?
Donna: [00:20:36] Yeah, there was, um, I think probably around the fourth or so sound processor that I got. Um, had a bigger grab of sound. And so I could hear at a that sounds that were at a distance more. Um, and that was a big difference. You know, I could hear people in another room, I could hear environmental sounds that I hadn't ever been able to hear before. So that was a big one. Um, you know, the, the Bluetooth is kind of cool as well, you know, being, being able to talk on the phone and have the sound come right through the Bluetooth technology is nice. I still use the Telecoil if I have a landline phone. Um, but as you know most phones or most people are using mobile phones now, so mostly you're using Bluetooth then but, but for example in a, in a theater or something that's still using a system that connects to hearing technology, whether it's a hearing aid or a cochlear implant, people are often relying upon a telecoil and the phone that sits on my desk is a landline phone. That's our our phone system for the office is a landline phone so I can switch the t-coil on for that and it works quite nicely for that. So I think what's been really nice with the technology is it's it's evolved with what's gone on in technology and society as a whole. And so we, we benefit right along with that. And for example um, Apple for their telephones, we've worked with all the companies so that you can stream directly from your phone into your technology, you know, if you want to. I still like to use the phone clip because sometimes I like to put my phone down. I'm working on the computer and I'm talking to someone and I want to not have to be holding the phone. Um, but it's, you know, it has that the, the improvements. I've been really fortunate to experience them and see them firsthand. And I'd like to assure people that you should never wait because the most of the improvement occurs in the external devices. And so you, you know, you get the internal device and I don't expect to ever change my internal device. You know, I have one of the early internal devices, but it's designed to allow these kinds of improvements to work with it. And I think the the all the cochlear implant companies design their technologies with that in mind.
Carrie: [00:23:41] Yeah. Which is a great commitment for. All of the companies to have the end user that we can all benefit from that. And so I have I want to go back to one question to when you first got activated, and I know you said the sound awareness was one of the first things that you really recognized. Was there anything that you did like informally or formally to help with getting used to the cochlear implant? The sound.
Donna: [00:24:14] Um, so I think, you know, I think.
Donna: [00:24:17] Initially you mean how did it how did I get used to the sound? Is that what you mean?
Donna: [00:24:21] Yeah.
Carrie: [00:24:22] So I know, like, for me, I ended up doing training, some auditory training and just different things like that to get used to hearing more with an electronic signal rather than an acoustic signal.
Donna: [00:24:37] You know.
Donna: [00:24:38] In those days I they didn't actually. Give therapy to adults. And I asked for it and.
Donna: [00:24:50] They said.
Donna: [00:24:51] I still remember them telling me your life is your therapy.
Donna: [00:24:59] And so I you know, I was sort of push on. And I said, well, you.
Donna: [00:25:03] Know, you can listen to books on tape and stuff like that. So my son, who at the time was a little kid, when was, you know, what can I do? What can I do? You know that? And so he used to read me books.
Donna: [00:25:18] So he would be great on tape.
Donna: [00:25:21] But my my child. So he you know, he did that. And and I think I, you know, learning.
Donna: [00:25:28] To use the.
Donna: [00:25:29] Phone initially, particularly with the first sound processor, which didn't have the the depth and capability of the ones that came after I used to practice. And and my mom, who was so anxious for me to learn to use the phone, would would work with me on most nights. You know we would 10 minutes or 15 minutes. And you know, in the way you get the phone a lot of times is you, you, you work with someone that you're not embarrassed to, to make mistakes with and you pick a topic. So you say, you know, the topic today is blotch. And so you have a known set of topics that you'll be talking about. And so we did that, you know, and then if I, you know, would miss a word three times, then, um, you know, she'd figure out another way to, to say it for me. Um, I mean, now there are materials that we give people and there are some really nice applications, both for phones and for computers. Angel Sound is one I always tell people to use that I really like the CI companies all have, um, materials that you can use. Um, I think I, I wish that more adults did have access to, um, to professional therapy. And we, we actually promote that and have materials on our website that encourage people if they feel they would like it to look for a speech language pathologist or someone who provides auditory therapy. Adults typically don't mean a lot. Some people might, but I think everyone could benefit from someone to help them initially. Um, if only to say here's some ways to practice. You know, here's the things that you, you can do to, to practice. And so my practice was, was in fact listening to people because I was, I was in a workplace setting. Um, and then, you know, having my son read me books and, um, you know, there really wasn't, there wasn't that much that we were doing for adults in those days. There really wasn't.
Donna: [00:27:56] Yeah. But no, that was a great.
Carrie: [00:27:59] Way that you kind of figured it out for yourself to habilitate or rehabilitate your hearing and by listening with your mom and your son.
Donna: [00:28:11] Yeah. And and I did use assistive.
Donna: [00:28:14] Listening devices in concert with my implant. Um, and at the time, I was working for an organization for people with hearing loss. So we used. An induction loop for board meetings and staff meetings. Et cetera. So that was helpful to me as well. I had that, you know, the sound coming from the speaker directly into my sound processor. And and that's definitely a better way to listen, you know, if people are going to the theater or whatever and and they don't have captioning which some theaters do have or they don't have an assistive device or the assistive device isn't working very well, which sometimes happens. Um, but it is a good way to get a cleaner signal into your technology, whether it's a hearing aid or a cochlear implant.
Donna: [00:29:16] Um.
Carrie: [00:29:17] Yeah. So thought would kind of go into some of your professional experiences as well. You were talking about being at a board meeting and it being looped and using assistive technology. So I thought that was a good segue . Anyways, I know you've been a fierce advocate in both the nonprofit and the for profit arena. Can you share a little bit how you got started in these different arena before coming to which we are going to get deeper into in a moment?
Donna: [00:29:49] Well, you know, honestly.
Donna: [00:29:52] I fell into it literally. I thought I would do it for a few years and go back to what I was doing. I didn't think that I would stay in this for most of my adult working life. Um, so I took the job at what was then called self-help or hard of hearing people. And it was at a time when this technology was was really rolling out, you know, and so it, it, it was sorry, my phone went off. Okay.
Donna: [00:30:35] Did you hear that?
Donna: [00:30:36] I did. But it's all good. It's real life, right? We both heard it.
Donna: [00:30:44] It came into my technology, so I just turned it off. Um.
Donna: [00:30:52] What was I saying? I was talking.
Donna: [00:30:54] About You.
Carrie: [00:30:55] Got into.
Donna: [00:30:56] Self-help? Yeah.
Donna: [00:30:57] Yeah. Being in a place.
Donna: [00:30:59] Where I could promote cochlear.
Donna: [00:31:00] Implants.
Donna: [00:31:01] You know, and it was an early time in the rollout. And at the time there was just one company and other technologies were, you know, about to, to roll out. But it was also a time when we were promoting assistive listening devices. And and it was also right after the passage of the Americans with Disabilities Act, the ADA. And so that provided a lot of a lot of mechanisms for us to promote access for people. And I served, as you said, when you read read my bio, I served on the access board, which is a federal agency that looks at access for people with disabilities, all disabilities. And so the ADA had been passed and we were looking at what the regulations should be to enhance access for for people. And, and being that I was deaf and used….inaudible..Did in in acoustics, in classrooms, in assistive listening devices, in alerting devices, in hotels and other places so that when you go to sleep at night and there's a fire in the hotel, there's an alerting device to let people know that something's going wrong. So it was really exciting for me to have that opportunity early on after the ADA was passed and and be part of that. And then the other thing that was going on at the time was we were rolling out cell phones as you know, them today. Digital telephones were coming out. And up until then, the the mobile phones that we had were analog and they didn't interfere with hearing devices. But the the first digital wireless phones that came out, if you were standing near them and wearing either a hearing aid or a cochlear implant, you got a big buzz. And so we were very involved in those issues and worked with the Federal Communications Commission to really force. And that I have to say, it was it was they did not want to go along with this, but to get the manufacturers of cell phones to be thinking about how they were going to harden their devices so that people who were using hearing technology could use them. And and there was a rating scheme that we initiated so that if you were going to get a cell phone, you could look on the box and see to the extent to which it was usable by someone who was using hearing technology.
Donna: [00:34:19] So that was exciting to be involved in that and to be in a position to affect the availability and usability of those wireless phones then and now. And and so I have to say honestly that I, I don't find that my cell phone is particularly compatible in Telecoil. Um, it, you know, I, it's not an area that I work on anymore, but I'm not sure how successful we've been in the long term. And I don't use my cell phone in Telecoil. I don't have to because I have Bluetooth or I can hold my phone up and and couple acoustically, although I prefer to use some other mode of getting the sound in directly. But we, you know, we were involved in that. And so it was really, you know, it was really rewarding for me to see, um. Our advocacy in combination with our governance system in this country can really provide appropriate access for people with disabilities. And that was true also for children. You know, with the rollout of IDEA and thinking about acoustics in classrooms, which was another issue that that I was involved in and in terms of how we were going to include acoustics in classrooms as part of the ADA. So, um, you know, there's, there's some of the things that I was really excited to be involved in and to be able to affect.
Donna: [00:36:10] Yeah.
Carrie: [00:36:11] Well, I'm grateful that you were involved in all of that because I personally use all of the things that you were advocating for, whether it's acoustics or like you said, Telecoil or making sure phones are more compatible and things like the fire alarms and hotel rooms, like things that people don't think about unless you're really in the shoes of someone that is living that life. And just to kind of go back how I feel, like you said, you fell into it. But it takes a lot of courage. And to get to the point where you can advocate for what everything that you're advocating for as an individual that's deaf and hard of hearing. How did you get to the point where you were like, Yes, I'm going to work for these agencies and government that is advocating so strongly?
Donna: [00:37:06] You know, I have to think.
Donna: [00:37:07] That the experience that my father of my father and even though I didn't know that he at the time that he had retired because of his hearing loss, I knew how he struggled. You know, And I, I recall being.
Donna: [00:37:27] I'm in a store somewhere.
Donna: [00:37:29] And he didn't understand what people were saying. And and at that point, I had nearly normal hearing. So I would help him and support him. So and I certainly remembered how my grandmother struggled, you know, and how left out she always was. Um, and for me at that point, you know, had I not received a not had the ability to get a cochlear implant, I wouldn't have been able to continue to work. And an environment in which people use spoken language and listening and talking. I would have had to have done something different. I would have had a very different life. Um, so, you know, I really did just fall into it. Carrie, I, you know, I, I'm a fast learner.
Donna: [00:38:26] Um, and, and.
Donna: [00:38:28] What tends to happen when I'm in something new, I.
Donna: [00:38:31] I.
Donna: [00:38:31] I spend a huge amount of time just learning about something new, and I enjoy doing that. And, and so I, I learned a lot. I was lucky that I had people around me who were more experienced, um, in the, in the advocacy side of things. I did know government because that's what I was trained in. But, but not so much for disability, more related to urban planning and processes for particularly local government and states. So I had that experience that, that fueled what, what came afterwards. Um, and, and I think that helped me. I had very good training for my, for my graduate work, you know, So, um, that, and, and they also part of my graduate program was they taught us a lot about how you collect data, how you do survey research, how you interpret data and how you present it. And, and so that has always been a part of what I have done in this field. And so although I was I was.
Donna: [00:39:45] Trained.
Donna: [00:39:47] In terms of working in and for government, it definitely was transferable. You know, in terms of what I'm, I'm, I'm doing now. Um, I Feel like. Also the fact that I grew up with this in my family and then experienced it myself.
Donna: [00:40:11] It gave me a window into what it was like and how important it was for for us, those of us that work in this field to ensure that people have what they need to have a level playing field.
Donna: [00:40:25] You know, and, and that's you know, that's kind.
Donna: [00:40:29] Of an underpinning of this country.
Donna: [00:40:31] And it's not.
Donna: [00:40:32] Necessarily the case everywhere in the world. I've worked in many places around the world. And some countries, they don't.
Donna: [00:40:41] Have that same perspective about ensuring that people with disabilities do have a level playingfield.
Donna: [00:40:49] And it's one of the the special things. And, you know, we have a legal system that supports that. And sometimes we we don't necessarily have everything in place to make it work the way it's supposed to. Um, and, you know, people sometimes say to me, you know, well, the laws are there. Why, why isn't it working? The laws are the first, you know, that's kind of the first floor. And then we have to come in and we have to enforce those and figure out how it is that we're going to make those laws work for children in school and wherever they go. And for those of us who are adults.
Donna: [00:41:29] Um, I'm a.
Donna: [00:41:31] Huge fan of theater.
Donna: [00:41:33] And, and.
Donna: [00:41:33] I live outside of Washington and my husband and I love the Kennedy Center and they are so great at accommodations for for people with disabilities.
Donna: [00:41:46] Um.
Donna: [00:41:47] The Kennedy Center has an assistive listening device that's in place with somebody who's staff sit at every single performance. You pick up your assistive device and then every show that they have has at least if it's a major show, there's at least two showings that have captioning on the on the stage. And now the latest thing they have is if you go at a time that they're not going to have the captioning on the stage on the box we call it, they'll have a have an.
Donna: [00:42:25] Ipad on your seat. And you.
Donna: [00:42:28] You can have captioning.
Donna: [00:42:30] At your.
Donna: [00:42:30] Seat on the iPad.
Carrie: [00:42:32] It's amazing.
Donna: [00:42:33] It is amazing. And and you know.
Donna: [00:42:36] I don't know that there's any place else in the world that is so accommodating in that way. If somebody uses sign language, they have ASL performances for people. I notice they have had had.
Donna: [00:42:50] A cued speech performance.
Donna: [00:42:53] At the show that we saw last week. We saw Wicked. We took our my niece to see Wicked and. We were at a show that was a caption show, but they also had, you know, other forms of communication access. So, you know, it's been really amazing for me to have been part of the rollout of that, to help everyone and to enjoy it myself.
Donna: [00:43:25] So I think that's one of the exciting.
Donna: [00:43:29] Things that that I've been that I've been involved in that I'm very proud of.
Donna: [00:43:33] To contribute to.
Carrie: [00:43:36] Well, you should be very proud. First of all, and I'm grateful for all of that, too. And I love how you were able to build your personal experiences of your own family and your own journey and put it to practice and passion for everything that you do. Because I don't think anything gets done unless you have somebody that is very passionate and purposeful behind what is going on.
Carrie: [00:44:04] So obviously that is you and that is kind of a great way to talk about the American Cochlear Implant Alliance. I wanted to ask you, you have been a starter of that Alliance, but how did this idea come to fruition and how did it get started?
Donna: [00:44:24] Yeah, that's a really good question.
Donna: [00:44:27] I think for some time, people in the field, professionals in the field specifically felt that there wasn't enough focus on cochlear implants and the organizations that focused on hearing loss, the the ENT organizations, audiology organizations and the organizations for speech language pathologists, it get lost. You know, CI is a small part of what all of those professions that I've just mentioned do and hearing aids tend to be the dominant hearing technology that we think about. So it was felt that there needed to be. An organization that just focused on cochlear implants. And so the organization began with a group of of leaders from across the continuum of care. And it was always the case that this organization had physicians and audiologists and SLPs and educators and psychologists. So people who work with children and adults and they all came together and they. They they incorporated as a nonprofit organization. They wrote a mission statement which still stands today that basically focuses on improving access to cochlear implants for for people who need them through research, advocacy and awareness. So that's still our our mission statement. We very much are across those three areas.
Donna: [00:46:18] And and we didn't really know how that was going to play out. We had a mission statement and we had.
Donna: [00:46:25] People who knew that things needed to happen to improve access. Um, so that was all going on. And then.
Donna: [00:46:35] IvLeft the company that I was working for in September of 2012 and.
Donna: [00:46:44] Applied for the position.
Donna: [00:46:46] Along.
Donna: [00:46:47] With a number of other people. And I was selected and began in, in mid November of 2012. So we kind of got started about then, you know, some of the groundwork had been laid. We had a website that we really greatly expanded. We didn't have we weren't due to have a meeting until 2014. So we very quickly put together a small meeting in 2013. And then since that time we've had a conference every year and it's sort of a unique conference because we focus on clinical research and CI and things that support that. There's really no other conference that looks at clinical research and has all of those.
Donna: [00:47:34] Components in it.
Donna: [00:47:38] And we are we have funding that comes from our memberships. And right now we have over 2500 members.
Donna: [00:47:49] Mostly clinicians.
Donna: [00:47:50] But also individuals who have cochlear implants or parents or family members and military members. So we you know, we have an increasing number of of of.
Donna: [00:48:03] Those.
Donna: [00:48:04] Categories of people who care about CI as well. And and then what we began To be very involved in was the advocacy side of this field.
Donna: [00:48:17] And interestingly, when I first came.
Donna: [00:48:21] The Affordable Care Act had just been passed and was rolling out.
Donna: [00:48:25] And we were very concerned at that time that the ACA marketplace.
Donna: [00:48:30] Plans.
Donna: [00:48:31] Might not include cochlear Implant coverage on it.
Donna: [00:48:34] And so we this tiny organization at at this point with 50 states, with multiple programs in each state on the marketplace. And I was like, gosh, how are we ever.
Donna: [00:48:51] Going to do this?
Donna: [00:48:52] And so we came up with the.
Donna: [00:48:54] Idea of having state champions.
Donna: [00:48:57] And so that was the first thing we thought about was state champions, was having people who we could train on how to, you know, go and look at these plans and the state marketplace and and then know how to work with their states to ensure that the coverage was there for for cochlear implants.
Donna: [00:49:20] So that was the first thing we did.
Donna: [00:49:22] On the advocacy side. It was it was so cool.vThat we had people who who had never done advocacy before but wanted to make sure that their patients had access To Cochlear implants. So we started with that and then we we got into, you know, a number of issues.
Donna: [00:49:45] That were important. We've been very.
Donna: [00:49:46] Involved in the.
Donna: [00:49:48] Early Intervention Act and the rollout of those services for for children and.
Donna: [00:49:56] Families.
Donna: [00:49:58] We've been very involved.
Donna: [00:49:59] In.
Donna: [00:50:01] Medicaid at the state level to ensure that those services cover both children.
Donna: [00:50:06] And adults. And we're.
Donna: [00:50:08] Actually working on a number of states right now that currently don't cover cochlear implants in adults under.
Donna: [00:50:13] Medicaid.
Donna: [00:50:14] So we're working to expand that all.
Donna: [00:50:16] All states covered children.
Donna: [00:50:18] There's been some issues with the way.
Donna: [00:50:20] Children are covered.
Donna: [00:50:22] And I think one of the the successes that I'm very proud of relates to the expansion of coverage under Medicare. So Medicare has covered cochlear implants for a long time, but the problem was.
Donna: [00:50:39] That the.
Donna: [00:50:40] Coverage didn't keep up with private employer.
Donna: [00:50:45] Plans. And so very.
Donna: [00:50:46] Very early on in the organization's history, we decided we wanted to work on that and we were able to get the Centers for Medicare and Medicaid Services to agree to.
Donna: [00:50:59] Cover.
Donna: [00:51:00] Cochlear implants.
Donna: [00:51:02] At a in a different way and an expanded.
Donna: [00:51:04] Way for individuals who are part of a study that we ran. And so we ran That.
Donna: [00:51:11] Study took a long time and then finally in.
Donna: [00:51:15] September.
Donna: [00:51:17] Of last year.
Donna: [00:51:20] We we did get the expanded coverage under Medicare, which was huge.
Donna: [00:51:26] It just makes it so much more available for people 65 and up who need this technology but have been prevented from getting it because they had too much hearing, you know.
Donna: [00:51:40] Which was, um, you know.
Donna: [00:51:44] Just not enough to be able to, to talk on the phone or negotiate the world. So we work on a number of issues like that. We work on awareness.
Donna: [00:51:56] We've recently started giving. Webinars for for parents and for adults and.
Donna: [00:52:06] Family members who want to learn more about particular topics.
Donna: [00:52:09] So coming up next Tuesday, we have a Tuesday talk, but we have these once a month on Tuesdays on different topics. So the one that's coming up is on the surgery, which Sometimes people have.
Donna: [00:52:24] Concerns about, and we record those and they're available at any time so people can come on.
Donna: [00:52:32] And and.
Donna: [00:52:34] Learn more and they're free and they're designed to be for a consumer parent.
Donna: [00:52:41] Audience.
Donna: [00:52:43] And are those do.
Carrie: [00:52:44] You need to be a member of ACIA to participate or hear the Tuesday talk?
Donna: [00:52:51] No, they're open to anyone. Okay.
Donna: [00:52:53] We, of course, always love for everyone to be a member, but we don't ask. And honestly, we don't care. We're just really trying to get the information out as broadly as we can. And we also try to reach the professional hearing health community that is outside of the CI world so that they know to refer a patient. And just like I was so lucky to have had Susan, this was so many.
Donna: [00:53:28] Years ago three decades ago. Just think she she realized.
Donna: [00:53:32] At that time she wasn't.
Donna: [00:53:33] Involved.
Donna: [00:53:34] In providing CI services but she saw how much benefit they provided for her patients. And so she.
Donna: [00:53:43] She was the one I mean, I probably would have stumbled over it at some point, but she probably saved me 3 or 4 years by pushing me in that direction. And so I you know, I feel like I had people who supported me early on so that I could.
Donna: [00:54:07] Have.
Donna: [00:54:08] The benefit of this. And so we we try to reach.
Donna: [00:54:11] Those general.
Donna: [00:54:13] Practitioners so that people know to tell people that they could benefit from a different kind of hearing technology at this point. And even if they go in and have an Evaluation.
Donna: [00:54:26] And learn that they're not right, then a candidate, I think it's important that people know that they have that hope if their hearing declines.
Donna: [00:54:34] That they have something that will allow them to get better rather than continue to get to get worse.
Carrie: [00:54:41] Yeah. And I know that.
Carrie: [00:54:42] You all of that information is very important. And ACIA has put together a variety of task forces to that have come up with pretty much some papers that individuals or clinicians can utilize too. Can you share a little bit more about the task forces and how that impacts that general hearing health care.
Donna: [00:55:11] Sure.
Donna: [00:55:12] And I should also say a lot of this is on our website.
Donna: [00:55:15] So if people want more.
Donna: [00:55:18] Information way beyond from what we're we have time to talk about today, Carrie. Our website is acialliance.ogr
Donna: [00:55:27] And we have.
Donna: [00:55:28] Most of what's on our website is designed for people from outside of the.
Donna: [00:55:32] World. So we, for example, have I mentioned.
Donna: [00:55:38] The the state champions who we provide support and training for and they work on typically things that are right within their own states, you know, so they assemble people to help them participate in state advocacy and passing laws and changing laws, etcetera. But we, for example, had a, um, a task force that worked a few years ago on therapy for children.
Donna: [00:56:20] So what what should that look like?
Donna: [00:56:22] You know, if you have a child with a cochlear implant.
Donna: [00:56:26] Um.
Donna: [00:56:26] How many years should they get.
Donna: [00:56:28] Therapy and what sort of person.
Donna: [00:56:31] Should a family be looking for to provide that therapy?
Donna: [00:56:35] So we have a guideline that that that task force put together.
Donna: [00:56:42] To provide guidance. And it's been very helpful to families.
Donna: [00:56:45] In terms of talking to insurance about how much.
Donna: [00:56:50] Therapy their child needs and insurance companies should.
Donna: [00:56:53] Cover it. Um, and then we.
Donna: [00:56:55] Have recently had four task forces that worked on candidacy for different populations. So there was a task force that worked on how you should.
Donna: [00:57:09] Determine candidacy.
Donna: [00:57:10] For An adult with Bilateral deafness and for a child with bilateral deafness. So those task forces each came up with Guidance.
Donna: [00:57:23] And the pediatric one has been published and is on Our Website.
Donna: [00:57:28] And it's, um.
Donna: [00:57:30] It was a peer reviewed paper that appeared in ear and hearing, which is a scholarly journal and it's, it's open. We we paid to have it be open access.
Donna: [00:57:41] So that's.
Donna: [00:57:42] On our our website the one on adults will be coming out at some.
Donna: [00:57:45] Point in the not too distant future.
Donna: [00:57:48] And then we had task forces that looked at.
Donna: [00:57:52] Cochlear implants.
Donna: [00:57:53] In children and adults who have single sided deafness.
Donna: [00:57:58] So it.
Donna: [00:57:59] Used to.
Donna: [00:57:59] Be that we would provide SSD only to people who had.
Donna: [00:58:03] Bilateral deafness.
Donna: [00:58:05] But now we're recognizing the impact.
Donna: [00:58:08] That.
Donna: [00:58:10] Single sided or unilateral deafness has on a child's ability, for example, to to learn in the classroom. And we've discovered that children who hear only on one.
Donna: [00:58:25] Side have much more difficulty in in an educational setting.
Donna: [00:58:32] And in negotiating the world in general. So it's now.
Donna: [00:58:37] Become.
Donna: [00:58:39] Um, recognize that those.
Donna: [00:58:41] Children should get cochlear implants and they should get them.
Donna: [00:58:44] As early as possible. As soon as we identify that they have.
Donna: [00:58:51] Deafness in that ear. And there are some conditions in which that's quite common. If a child is born.
Donna: [00:58:58] With CMV, for example, unilateral deafness is.
Donna: [00:59:02] Is often one of the effects. And in adults, people sometimes.
Donna: [00:59:08] Either develop unilateral.
Donna: [00:59:12] Hearing loss from.
Donna: [00:59:14] Exposure to noise.
Donna: [00:59:16] Or disease or whatever, and sometimes it just happens and they they don't know why it's happened. Um, and adults often feel, um, very impaired by.
Donna: [00:59:30] Having hearing only.
Donna: [00:59:31] On one side.
Donna: [00:59:32] So that one as well. We have a.
Donna: [00:59:36] Guideline in terms of determining how to assess and manage somebody who has um, deafness on one side.
Donna: [00:59:47] So those are four that we've worked on very recently. And then a.
Donna: [00:59:52] New one that Carrie and I are working on.
Donna: [00:59:56] Um, we'll, we'll be looking at.
Donna: [00:59:59] Um.
Donna: [01:00:00] You know, what are the, the.
Donna: [01:00:03] The benefits.
Donna: [01:00:04] Of.
Donna: [01:00:05] Providing access to sound for children, you know, why is it beneficial and, um, you know.
Donna: [01:00:15] How can we have messaging.
Donna: [01:00:17] That allows the public to understand.
Donna: [01:00:21] Why that's important and we haven't really done a good job on that. I think people don't really understand why it's different to have hearing. You know, why isn't why isn't it enough to just provide a child with access to to sign language if if they're deaf? And so sorry. Um, that's the phone line for the organization.
Donna: [01:00:54] Um.
Donna: [01:00:55] But anyway, so.
Donna: [01:00:57] Um, you know, that's another example of something that where we have a range of people.
Donna: [01:01:03] Involved who.
Donna: [01:01:05] Understand.
Donna: [01:01:07] Um, the topic and, and Carrie and I actually are the.
Donna: [01:01:13] The task force chairs for putting that together. And we're going to bring together an illustrious group of professionals who work with children.
Donna: [01:01:24] And come up with what we hope will be messaging that better explains.
Donna: [01:01:30] The.
Donna: [01:01:31] Benefits of having access.
Donna: [01:01:33] To sound. I think I've said that right, Carrie, you.
Donna: [01:01:36] Should chime in because.
Donna: [01:01:37] You're part of this.
Donna: [01:01:39] No, no.
Carrie: [01:01:40] I think you said it well. And just again, having a message that really supports, um, what, you know, the access to sound and how that access to sound can really help with language. And that is, you know, something that we want to ensure that others are fully informed about so that families who are making these decisions have all of the knowledge that they need in order to know what's best for their own child. So whether that's a spoken language or a sign language, having that information is going to be critical for our families. And like you said, we haven't had a, a, um, I guess a clear message. So coming up with a clear message is going to be important. And hopefully I didn't lose you, Donna. I don't know if it was my end or your end.
Donna: [01:02:42] You're back. I'm back. I think.
Carrie: [01:02:45] I don't know where. I know. I got frozen. Could you still hear me? Or was it.
Donna: [01:02:51] Was it gone?
Donna: [01:02:53] Did you Until just now.
Donna: [01:02:55] You were. You were Your face was frozen. And I wasn't. I wasn't hearing.
Donna: [01:03:00] You.
Donna: [01:03:01] Okay, well, maybe.
Carrie: [01:03:02] We'll try to. I'll just try to summarize. I think I was just saying, having a clear message for families, whether they are using a visual language or a spoken language, having all of the information and having a clear message and information is going to be important. So that was kind of the reason this new task force was put together, and I'm looking forward to working with you on that one.
Donna: [01:03:30] Yeah, I'm and.
Donna: [01:03:31] I'm I'm looking forward to working with you as well. And it Carrie been so involved in the organization as, as a state champion.
Donna: [01:03:40] And and.
Donna: [01:03:41] Also we have another network for adults.
Donna: [01:03:47] And.
Donna: [01:03:47] Parents who are who have or have family members who have cochlear.
Donna: [01:03:53] Implants.
Donna: [01:03:54] So that we have messages that are coming.
Donna: [01:03:57] From.
Donna: [01:03:58] People who have first firsthand experience, just as I do and.
Donna: [01:04:04] Carrie does. And and it's so.
Donna: [01:04:06] Important that.
Donna: [01:04:07] People hear from us so that it's not professionals.
Donna: [01:04:14] Talking about this technology and the experience of.
Donna: [01:04:17] Having the technology.
Donna: [01:04:19] But it's it's also those individuals who speak for themselves. So we're we're grateful to have people.
Donna: [01:04:27] Like Carrie be involved as professionals and as people who understand the technology themselves. And I think that's what's really unique about the organization is it's one of the few, if.
Donna: [01:04:43] Not the only organization in the field that has professionals from across the care continuum and also from the recipient community as well. And I've been very excited to be part of it.
Donna: [01:05:01] From from the start and watch it grow and, and meet all these amazing people.
Donna: [01:05:09] That I have.
Donna: [01:05:10] Had the privilege to know and work.
Donna: [01:05:12] With.
Donna: [01:05:13] Over the over the years. You know, it's funny, someone once asked me someone once asked me.
Donna: [01:05:20] You know, if I could not be deaf, would I prefer to not be deaf?
Donna: [01:05:27] And and I thought for a minute and I said, Well, but if I hadn't been deaf, had all these experiences that I've had in life, you know, all the people that I've met because I was deaf. But I'm certainly glad that I was able to get a cochlear implant so that I could hear
Donna: [01:05:49] And.
Donna: [01:05:50] And travel the world and be able to talk to people in different settings. So I guess I have the best of everything.
Carrie [01:05:57] You do.
Carrie: [01:05:57] And I'm just grateful that you have been with the American Cochlear Implant Alliance.
Donna: [01:06:03] from the.
Carrie: [01:06:04] Beginning, because I know it has grown to be such an organization that supports professionals across the hearing health care span, as well as consumers and families who are thinking about it on that journey. It's kind of a one place to get a lot of great information. And as you said, initially, we have a lot of great organizations that support speech and hearing or our needs, but they don't focus in. And so to be able to have one place where we focus in for a multitude of professionals and and individuals consumers is Such a benefit for for all. And then, like you said, for the advocacy piece as well as the informational piece and the research part of things. Having that dedication, you have a focus and that's what your focus is.
Donna: [01:07:03] Right? And it also provides.
Donna: [01:07:06] Us with a with a mechanism to support those larger organizations, which we do. So alliances in our name. And that means, you know, that we bring all of those other organizations together. We work very closely with all of them.
Donna: [01:07:22] Um
Donna: [01:07:23] Know, and, and try to make it so it's not competitive. But so it's, you know, it's supportive and we do things together with them.
Donna: [01:07:32] To.
Donna: [01:07:33] Everyone's advantage. So I think that's.
Donna: [01:07:36] The.
Donna: [01:07:36] The, the other really great thing about the approach that.
Donna: [01:07:39] We've taken to.
Donna: [01:07:41] Really try to collaborate with. A range of different organizations. We interviewed a bunch of different organizations recently for an update of our strategic plan, and we.
Donna: [01:07:53] Met with.
Donna: [01:07:54] The CMV Foundation and with hands and voices.
Donna: [01:07:59] And.
Donna: [01:08:00] Consumer organizations, as well as the professional.
Donna: [01:08:03] Organizations. And it was really neat to hear.
Donna: [01:08:06] You know, what they thought we should be doing.
Donna: [01:08:10] And.
Donna: [01:08:10] How we're contributing to their work. So the experiment worked.
Donna: [01:08:17] I think, and I'm very proud of what happened.
Donna: [01:08:21] And it has flourished amazingly.
Carrie: [01:08:24] And yeah, as we kind of wrap up, is there anything that I missed that we didn't talk about?
Donna: [01:08:31] No. I think you really hit on everything, Carrie. You let us down a great path. And it's it was really fun to be on this with you. You're you're a great podcast queen. And and I'm I'm really glad I got to be part of it with you.
Carrie: [01:08:50] Well, I want to say thank you for being willing to be a guest on the empowEAR Audiology podcast and sharing your personal journey, your family journey, your professional journey, and all of the advocacy that you have done along the way. I mean, I know has helped me as an individual with a cochlear implant and with hearing loss and accessibility out there in the community. In the real world. A lot of it has to do with your passion and work that you have done on many different levels in your personal and professional career. So thank you for all of that that you have done to contribute to the field as well. And I also want to thank all of our listeners who are with us today and the EmpowEAR Audiology podcast. I encourage you to share this with others if you've enjoyed it and would appreciate if you have a moment to give a five star review because this actually helps others find the EmpowEAR Audiology podcast. So again, Donna, thank you for being a guest today.
Donna: [01:09:56] Thank you. It was great.
Announcer: [01:09:58] This has been a production of the 3C Digital Media Network.
Episode 53: empowEAR Audiology - Dr. Hilary Davis
Announcer: [00:00:00] Welcome to Empower Ear Audiology with Dr. Carrie Spangler.
Carrie: [00:00:14] Welcome to the Empower Ear Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode.
Welcome to the EmpowEAR Audiology Podcast. Today I have someone with me. Her name is Dr. Hilary Davis and she is a pediatric audiologist at the Vanderbilt Bill Wilkerson Center. She received her Bachelor of Science from the University of Texas at Austin and a doctorate of audiology from Vanderbilt University. She is an educational audiologist providing services to several districts in the Middle Tennessee area. She also works on research studies at Vanderbilt, focusing on deaf and hard of hearing school age children. When not at work. You'll find her at dance class or hanging with her three year old and ten month old daughter. Hilary is the current past president of the Educational Audiology Association. Welcome, Hilary.
Hilary: [00:01:33] Thank you. I'm so excited to be here with you today.
Carrie: [00:01:36] I know I always love to interview my fellow educational audiologist on the podcast, but I thought before we got started into the meat of the podcast, I would ask you, how did you get into the field of audiology?
Hilary: [00:01:53] It's a good question, and I know people have lots of different answers about how they got into audiology.
For me.
Hilary: [00:01:59] I really went to UT Austin because I was interested in American Sign Language and they had a really good program for teachers, for deaf and hard of hearing teachers. But I took the intro to Communication and Sciences Disorders class. I just happened to take it and fell in love with audiology, the tech component and, you know, just really, really loved that aspect of it. And then once I did my doctorate and I did a school rotation, that was it for me. I wanted to be in the schools doing this. So it really it really puts together a couple of things that I like doing the audiology piece, the hearing piece, but then also working with others who are like the teachers who are working with children with hearing loss. So.
Carrie: [00:02:46] Well, that's a great story. I love how it kind of came full circle for what initially went into you. And then it really plays into everything that you do today, too. And you, in addition to all of the educational audiology services that you provide, you also do quite a bit of research at Vanderbilt. And can you share a little bit about your research and interest there?
Hilary: [00:03:12] Absolutely, yeah. I've been very fortunate to work with lots of researchers at Vanderbilt and I love being able to be a clinical perspective on the research teams. I think it mirrors what we do in research really matters in schools and clinics and then vise versa to take those experiences back to the research side as well. So like you mentioned, I do outreach with schools through Vanderbilt. They contract with us for educational audiology. And then in terms of research, what we're going to talk about today and something that's been a big part of my work has been looking at listening related fatigue for deaf and hard of hearing students. And so we've spent goodness almost a decade working and looking at how fatigue associated with challenging listening situations can impact this population.
Carrie: [00:04:02] Yeah, that's a great topic and I'm so glad you and your team have spent so much time with it, because I think all of us have fatigue at one point or another in our lives. But can you just share a little bit more about what listening related fatigue means?
Hilary: [00:04:20] Absolutely. You're right. Fatigue is a word that especially as working moms like we were talking about before the podcast started. We feel fatigued. That is so true. This this specific term listening related fatigue is really focusing on the challenges that individuals who are deaf and hard of hearing might experience because of challenging listening situations. They have to put forth more effort just to hear and understand what's being said, and it can really cause stress and fatigue. So that's what listening related fatigue is, is specifically focusing on.
Carrie: [00:04:55] All right. So you and your team have been diving into this topic for a long time. So what did you how did this all get started?
Hilary: [00:05:07] Yeah, good question. For a long time, parents, teachers and children have said there's there's something going on where this is more fatiguing. The children we work with or that that we are raising are worn out. There's something going on and there's something that we need to do to address this for our children. So that's really what started it for us. And now, of course, we also like a lot of research, it starts in adults and then we transition that over to children, not the same population, but there are some similarities between them. When we heard adults saying, I am seeing these difficulties, I am seeing the fatigue and how it's affecting me, We knew that this was probably also an issue for children and we wanted to look into that more. We also knew that just from broad literature, fatigue has some really significant impacts on quality of life. People have more difficulty at work, at school, paying attention. All kinds of really poor outcomes are associated with fatigue. So we knew if this was an issue for deaf and hard of hearing children, we wanted to learn more about it.
Carrie: [00:06:13] Yeah. So how did you guys get started with kind of diving into the research? I'm assuming you'd had, like, focus groups and things like that that you really were looking into.
Hilary: [00:06:26] That's exactly right. We first started by saying, okay, we're hearing these comments. Let's pull people together so we can get some rich qualitative information. We did focus groups of parents, of children and then of people who worked at school with children. So that was interpreters, educational audiologists, SLPs general and special and deaf educators to come to come together in groups so that we could really get a better understanding of Is listening related fatigue a problem? What does it look like? What do people do to cope with it? And we wanted to get that information directly from people who knew most about this topic. So that's where this project started. We pulled together those people and were able to create what we called a theoretical framework for better understanding listening related fatigue. If you look at a paper we published in 2021, it's available on our website, It actually has a figure that walks through what we learned after we pulled together these focus groups and analyze the themes that were popping up in those groups.
Carrie: [00:07:28] And then. So why don't you kind of gather that information from the focus groups? What were some of those situational determinants of listening related fatigue that you guys found in that framework?
Hilary: [00:07:42] Yeah, that's a great question. Situational determinants was a fancy term that we used just to meet. What are things that are happening before fatigue is showing up for, for deaf and hard of hearing children. And it's no surprise that, number one was when things are noisy or there's lots of people talking, children, their parents and their teacher said these children seem more fatigued and worn out. Specifically for children, they also mentioned things like the cafeteria, the gym, playing on sports teams and needing to hear lots of different people in a in a big area that was more fatiguing. They were able to describe then that when they felt fatigued, it might be something like feeling physically fatigued, like I have a headache or I'm I need to take a rest. But the big one that we really saw was that children were also saying, My brain is tired, I'm worn out mentally, I can't keep paying attention. I need to zone out or take a break. And so we realized that there were some cognitive things going on as well as a physical sort of fatigue. It was also interesting because parents and teachers would say there seems to be some sort of social emotional component as well. Children might seem angry or frustrated, embarrassed even. There's just these different feelings that are coming up associated with the fatigue as well.
Carrie: [00:09:06] So with that, I know you said that there were some of these things that were popping up, like the anger and those different emotions. But were the children able to describe that when you were talking to them?
Hilary: [00:09:20] It's a good question, too. It really depended on the children. And I felt like children who are more self aware and those who were more. Had higher levels of language, were probably able to meet us there. When I did a couple of interviews with individuals who were in undergrad or grad school. Those were when they really started to say, okay, now that I'm in college work, I'm able to see this is so fatiguing. Now I can look back on high school and go, okay, that was happening to me then too. I just didn't know that I was doing something differently from my peers. And so I really struggled to communicate that to anyone, they would say. Now I realized when I came home from school every day, took off my hearing aids and just laid flat on the couch. That was because I was really tired from listening and understanding all day. My peers weren't doing that. My peers who didn't have hearing difficulties weren't doing those same things. So it really depended on the child. And younger children really struggled to help explain that information to me, even if their parents would say. Absolutely. I'm seeing this as an issue. Kind of that same example. My child comes home every day after school, takes off their implants, want want to take a rest. The child might tell me, no, I don't have any problems with like hearing and understanding. So it really it really was varied in terms of the responses.
Carrie: [00:10:42] Hmm. That's interesting. So let's just talk a little bit more about the Vanderbilt fatigue scales and how you and your colleagues developed this measurement to target listening related fatigue. And then I think we can answer some of the other question that I think go back to coping and and what we should do afterwards. But I know you guys have three different scales, and I would love if you could just explain a little bit more about those scales.
Hilary: [00:11:15] Sure. I'd love to do that. So those focus groups really informed the development of the scales. We took information and quotes from the focus groups and wrote thousands of items that could potentially be used on these scales through a long series of process. Long process. We statistically reviewed those and made sure that each of the items was relevant, important for the concept of listening related fatigue. And we're going to give us high quality information. We were able to take that through a series of years of review and finally ended up with really short scales. We have one for children one for parents and one for teachers, and they range from 8 to 12 questions, so you can use them very quickly. We wanted to do that because we know time is of the essence and in schools and clinics we have to get the information quickly. So our goal with these scales then is to really identify who is struggling with severe, recurrent listening related fatigue that may impact their quality of life. So you can use these when working with students to get a better understanding of if this is an issue for them. As I've used the scale more, I also use this as a counseling tool. Sometimes I might observe fatigue, but a child's not reporting it. And I'll use this as a jumping off point to really discuss the topic and see if there's something that the team can use from this information to develop an individualized approach for that student to help intervene.
Carrie: [00:12:47] Have you found between the three different scales, like if you do it for one student and you do it with the student and then you have the parent do it and you have the teacher do it, do you feel like they match up or a lot of times they don't match up?
Hilary: [00:13:00] It's a good question. We haven't done much research on that with our scale in terms of if there's differences now in the literature at large. Oftentimes there are differences between parent and child reports on fatigue and other measures, and it kind of makes sense. Fatigue for a child may feel really internalized in a parent or a teacher might not see what's going on for something like that. And then on the opposite side, like we're saying, a parent or a teacher may say, I see all these things, but the child may not recognize that. That's the issue. For me, I see. I see that teacher and parents are usually pretty on the same page with with students, but if there are differences, I use that as a counseling tool. If the parent or the teacher is saying I'm not seeing any issues but the child's reporting or vice versa, it gives me a better holistic picture and really opens up the door for discussion at that point.
Carrie: [00:14:00] Yeah, that's kind of what I've seen too, when I've used it that I see the the child will have a pretty significant score and then the teacher will not have the same report. But like you said, they're kind of internalizing it or they're just really powering through because they want to do well. Yet, you know, they're exhausted by the time they they go home at the end of the day, which is kind of I guess one other question before we move on to like how this impacts them in the school and what we can do to help. But have you found any differences between like degree of loss or technology, whether it's cochlear implants or hearing aids or mild versus severe type of loss and the ratings?
Hilary: [00:14:50] Yeah, like most of what we do, we know that a mild hearing loss is not a mild hearing loss in terms of impact. And conversely, you know, a profound hearing loss is not always profound. In the same way, it's more of how much does someone want to and need to stay focused in a certain listening task. So any any type of degree, laterality or type of hearing loss can result in significant fatigue. And I think that's important to remind the team, especially when unilateral hearing losses or mild hearing losses get kind of tossed to the side. Sometimes those children can still say they're really, really fatigued and that might be because they are, like you said, really motivated to stay involved in what's going on and they might be really feeling pressure to do well at school or to hear what the teachers say. Sometimes my students with unilateral hearing losses have just anecdotally, some of the highest ratings of fatigue and. It may be because some of them are unaided, you know, don't have any sort of amplification device as well. But it definitely can be anybody, any person who has any degree or laterality of hearing loss can have a report of significant fatigue.
Carrie: [00:16:11] That's interesting. But it makes a lot of sense and it really speaks to the importance of doing these scales so we can find out more information. And it doesn't really matter what their degree of loss or laterality is. But so if we have someone at the school that's doing these scales and they see that there's some significant scores or even borderline significant scores, how can we as educational audiologist, as SLP, teachers of the deaf, anybody who's happen to be working with this student help in this aspect?
Hilary: [00:16:51] Yep. That's what that's like. The golden ticket question. I wish that there was like a formula that once we got a score, we'd know exactly what to do. I think the tricky part is, is although we're identifying that some children are struggling with fatigue, there hasn't been any research done yet that says when we get a score of 32, that means we need to implement these things. We've created a handout that's available on our website. Now that is a summary of some of the other publications that we've done, including some of the coping strategies that were recommended to us in the focus groups. We've put them all into a PDF document that you can download for free, think it's things that as professionals working with deaf and hard of hearing children, there are things we're thinking of anyway, but it can be helpful to have it all in one place to reference. We want to make the situation as best as we can as least challenging as possible. Right? So less background noise, What does that mean? We want to make it a good listening environment, so anything that you might acoustically modify, the technology, you might provide the preferential seating, you might provide any of those things that we're thinking of will also be really important. I think the other thing is, and again, there's no systematic way to do this, but really to be encouraging and thinking about listening breaks. What does that mean for a student? For some children, it really is written in. As you know, they get a five minute break after every auditory heavy lecture or group activity. For other students, it's more as needed. The teacher might say, Oh, they're really struggling. I'm going to send them down the hall to get a drink of water. They can reset and not have to listen for a minute and then they can come back. But again, there's not any research on that. It's just things that we've pulled together from reports of parents and teachers and children telling us these things seem to help us once the child feels fatigued.
Carrie: [00:18:45] Yeah, it would be interesting in the future to be able to do like a pre and a post with their listening related, you know, the fatigue scales and seeing if these different accommodations and support for different students actually helped with that.
Hilary: [00:19:01] Absolutely. And I encourage people to use it in that way. If they implement some sort of strategy, you can absolutely re administer the questionnaire. I get that question a lot via email. So I would say do it and let me know how it goes.
Carrie: [00:19:16] Yeah, we're learning as you go, right? But I, I will say that I feel like I've really incorporated this into all of my batteries now because I think it's so important to get that input from every member of the team and especially the child who's actually sitting in the classroom or experiencing things after at the end of the day too. But what what do you see in the future as far as this ten year project that I know has been so important to you and your team, what do you see going on with it?
Hilary: [00:19:53] Yeah, there's lots of ideas floating around, a few things that we have kind of in the works and trying to still figure out are some intervention type research studies that we can get a better handle on understanding if there's anything that can systematically be done once a child is experiencing a lot of fatigue. The other thing is knowing that there's other populations outside of the deaf and hard of hearing population that may also struggle with communication based fatigue. So anyone who has difficulty processing and decoding language may struggle with this. So APD, English language learners, speech and language disabilities, etc., those are things that we'd also want to look at. I think also just on our website, we're really hoping to expand and share our information in new ways. So infographics and PDF handouts, things that are really relevant to educators, educational audiologists, SLPs, the whole team, deaf educators. So we want to have really ready at the. Things that you can take to a meeting and say, these are ways that we can help this student. Those are things we things that we're working on and hope to help those who are serving deaf and hard of hearing students.
Carrie: [00:21:06] Good. Well, I can't wait to see those, because I know I'll be attaching those to emails and downloading those as well when talking to different teams. Hilary, Is there anything I didn't ask you that you wished I would have asked you about this topic or educational audiology.
Hilary: [00:21:23] I don't think that there's anything you didn't ask me. I think one thing that has been a question that has come up that I think is important for listeners to know is that even if you get a lower or borderline score on the Vanderbilt fatigue scale, dig deeper. We know that this isn't a significant problem for everyone, but it is a problem for some students. And not all students know how to describe it or really understand the topic. So I always say if you're getting a score but you're feeling like it's not exactly accurate, combine that information with your other observations, your other data points, what others are telling you, and still consider some of those intervention strategies if you feel like it would help the student. Just because you don't get the highest score possible on the Vanderbilt fatigue scale doesn't mean you can't educate the student, educate others and really use it to your benefit. So I would also hope that in the future we're able to have some sort of educational materials that helps to explain this topic and really delve into how we can provide additional services and supports.
Carrie: [00:22:30] Yeah, that's a great point because kind of like what we talked about at the beginning. Children don't always have the words or don't recognize why they're feeling those different feelings, but then when you have the opportunity to sit down with them and go through the scales and ask additional questions like a counseling tool, then they start to recognize, Oh, wait, maybe because I was in the gym at a basketball game all day long, I am exhausted because I had to concentrate so hard. But they didn't recognize that until they had the actual vocabulary and tools for that.
Hilary: [00:23:06] Absolutely. That's so true. And one thing another thing that we didn't hit on as much, but I think it's important for people to realize, you know, children who are struggling at school are often the ones that we think of, Oh, we really need to check in on them and make sure, you know, are they fatigued or are they having extra difficulty because of whatever struggles they're facing? The other population that we really need to focus on are actually those children that are working so hard and doing so well that they're just pushing through that fatigue and really, you know, they're motivated students. They're really putting a lot of pressure either on themselves or feel pressure from teachers or parents to perform well. Those are sometimes the students that get overlooked, I think, because they are looking good on paper, but they may be some of the ones that are the most worn out just because of how much constant effort they're putting forth to do that. Well.
Carrie: [00:23:58] Yeah, that's a really good point. What? So I know you mention that on the website. You guys have your articles and resources and the scales. Is there anything else that I missed on the website?
Hilary: [00:24:15] The website is still it should be updated here in the next week or so. What we're working with our web developer to do that, you're going to be able to find a paper version you can fill out of the scale as well as PDF Fillable versions, if that's helpful for you. You can also feel free if you use Google forms or other things to send out scales. You can transform this into anything you want to make it as usable as possible. And then, yes, you'll be able to find references to our articles as well as those infographics and handouts there. It also has our contact information on the website. So if you want to reach out to us emails, the best way to get in touch with us. Always happy to answer questions or hear your feedback on how you're seeing fatigue. Show up for your students or how you're using the Vanderbilt fatigue scales. It just helps us make things better for the students that we serve.
Carrie: [00:25:02] Well, Hilary, I know this is such an important topic that we don't really always talk about, but is very evident in populations and like you said, and other populations as well, such as auditory processing and English as a second language and all of that. So I'm hoping our listeners today, we'll go to the fatigue scales and take a look and download and start implementing their the scales into their everyday practice. So thank you. Hilary For being a part of today's podcast. It was such a pleasure to have you. And like I said, I always enjoy connecting with you. whether through Educational Audiology association or other topics that we both hold dear to my heart. So thank you again for being here today.
Hilary: [00:25:54] Thank you for having me. It was a great time.
Announcer: [00:25:56] This has been a production of the 3C Digital Media Network.
Episode 52: empowEAR Audiology - Chezi Pollack
Announcer: [00:00:00] Welcome to episode 52 of Empower Ear Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Audiology podcast, and I have a special guest joining me today from all the way across the world for me. He is an Israel and it is a pleasure to finally connect with you. Chezi, thank you for joining me today.
Chezi: [00:01:01] No, no worries. Thank you so much for having me.
Carrie: [00:01:04] So I must say that our deaf and hard of hearing world is a really small community and people can get connected when you least expect it. So for us, we have a common connector, Dr. Don Goldberg. And I know as we get into the interview today, I'm going to ask you later on how he became an important part of your life. But to get started today, I'm just wanted to share a little bit about you. You are a teenager that has a really empowering story to tell about your own hearing journey, about getting cochlear implants, about starting a podcast called My Hearing Thoughts. And I just can't wait to get started with this interview. So to begin today, can you just share a little bit about how you were identified with hearing loss? Kind of go back in time and give me a historical perspective. Yeah.
Chezi: [00:02:04] Yeah. So I'm going to jump all the way back from the beginning. So my mom and dad had me on October 4th, 2006, and originally I was born meant to be born on January 21st, meaning I was a preemie. I was born 16 weeks early. And as you know, that baby has to go on the next year and get a lot of support and medicine. And this for me, it was really hard for my parents because they were like, I could have died. So they had to give me medicine. Now, at the time it was very emotional for them. So they were there like literally every step of the way. I was there for four months and the time they didn't, they gave me medicine and. It helped me a lot. I think I don't know so much, but all I know is that throughout when they gave me the medicine, it affected my hearing. And at the time, my parents didn't know that I couldn't hear. Around when I was finally one year old, when I was finally a baby, one year old. They took me to a hearing test. And the doctor, I don't know who the doctor was, but he said. Um, to my parents. Because you can't hear. He can't hear anything. He didn't respond to any of the. The things that they were doing to any of the tasks that they had given me involved doing. So at the point my parents were really. Devastating. They did the most they could. Everyone prayed for me in the community. And then this is when they started looking into where I lived in for basically my whole life.
Chezi: [00:03:49] Originally, I lived I was born in New York and I lived there for one year. But after I got hearing loss, they started looking into more where more places were. It can help me with my hearing. So they found Cleveland and over there they found Cleveland Clinic and that's how they found Dr. Don, which I'm sure we'll get into later. And what they did was so they looked into it and seeing how it could help me with my hearing loss. And they also had to see how they could build on the life they got, what jobs they could do and how they know help me. And eventually they found Cleveland Clinic. And now how it's like the number one hospital for heart surgery and it's really great hospital. And at the time they were like, this seems that it can be really good for Chezi, can help him with his hearing loss. And then we moved it and we lived there for 11 years until we moved to Israel. So it was like a big part of my life also because my friends was the my friends were there and my teachers were there. And so we're getting a little off topic, but. I got my first implant, The Cleveland Clinic, by Dr. Woodson. I think I can't I don't know if I'm saying that, but anyway, she gave me my first cochlear implant when I was four years old. But from a baby. When I was a baby, I had a hearing aid. But at four years old I got my first cochlear implant on my left ear. So this one.
Carrie: [00:05:21] Okay.
Chezi: [00:05:22] Then when I was in first grade, so seven years old, I got my second implant. On my right side. And that's pretty much how I got my hearing loss and how we came to Cleveland and why we're out.
Carrie: [00:05:36] So I'm. Your diagnosis at age one to age four, you are hearing aids in both ears. Is that correct?
Chezi: [00:05:46] I'm pretty sure one year, but yeah, two years.
Carrie: [00:05:49] And then you got Do you remember anything about getting your cochlear implant at least when you were seven? Do you remember?
Chezi: [00:05:59] I think if I remember from four years old. So when I was little, I was obsessed until, like, these little animated kids shows. So I don't know. Have you heard of Strawberry Shortcake? Yeah. So all I can remember is when I woke up. This is when I was four years, by the way. So when I woke up, I remember there being a DVD player on my lap, having strawberry shortcake, and I just woke up from the surgery. I'm like, to my mom and dad. What is this? That I could barely speak. So I was probably talking like a baby's voice, like, what is this? But the I was just watching. They gave me a popsicle. It's like help. It'd be easier. And I'm pretty sure of like, I'm pretty sure I got a headache after. So they gave me a popsicle to calm down. And I just remember waking up to the theme music and then watching that. And then there's another I have another memory of getting mine at seven years old. And this time it was I woke up, but I saw my mom in front of me and the doctorr said, Just finished. I got another popsicle. I don't I forget what this one it's called, but it's red at the top. White in the middle and blue on the bottom and. I never asked for help. And I went to the and I was zig zagging.
Chezi: [00:07:20] I had just woken up and it was so hard to walk. Also, because I had this big bandage on my head since I just got my second implant. So my parents were. And then right after, not long after they closed. I don't know how to describe it, but it's Cleveland Clinic where they do the surgery. It was like a big film notch, like, What's my room? So they put a coat around me. I change, and then I just left. They were done. They told me the next time I need to come in and check in. And that was it. I remember my mom carried me and and my grandparents were there because my mom and dad both work at the same school. So they went to the. One the hospital to put it back. My dad went back to teaching. My mom stayed for this day also because she had just given birth to my little sister Habiba, who was a few months old. So she stayed home for the day and my grandparents with my sister. She wanted me because she was a baby, but I stayed home. My grandparents from my mom's side were there and just kept after me and watched me for I think if I'm correct, it was two weeks I got off and yeah, that's how that's the only thing I know.
Carrie: [00:08:37] Do you remember when you were activated then for the first time when they actually put that turned on the implant?
Chezi: [00:08:47] I do remember a little bit. It was like life changing because to me, I always like to put on hearing aid. But when I put the cochlear implant on, it was like a new life experiment, I guess you could say, because it had a new way of being a processor and adjusting. And normally, like this happens a few times where I lose my implant or it dies throughout the day. So I wear a different one and I take to school. And only when that other one's on, when I put the other one on, it just goes really. And that like that moment before it heals that way because I'm wearing like the Nucleus 6 and now I'm putting back on the Nucleus 7 and they have a similar viewing program, I guess you could say. So it's a different way of hearing and his way differently. So that's how I felt and what sound like when I first put out my. I'm like, This is life changing. It's just so much better. And it's just been amazing.
Carrie: [00:09:51] And I know when you first get the cochlear implant, it sounds so much different than what a hearing aid would sound like. So I am assuming that that's kind of where Dr. Don Goldberg came into your life. Can you share a little bit about how you met him?
Chezi: [00:10:10] Yeah, So if I'm correct, Dr. Don, in my interview, he said that when your baby it's normally a playdate with the kids and the parents, they go for learning because Dr. Don helps them learning with how they can talk to that and how they communicate with them because it's a little harder. So my mom and dad when I was a little baby, but. As time goes on, when I have my cochlear implant, that's when Dr. Don really came into the picture. I remember learning all of these things. We would always this like browns black sack. I don't know what it's called, but he put it over his mouth. He would say the sounds and you would go over and over with the hearing. So it would help me, my sound and my words. And then we would also we learned all of the 50 countries of the 50 states not countries and us A and we would do like these games if I asked how much longer I would lose a penny and there was a whole jar penny or he'd give snacks and you had to wait and you had to choose and you had to, like, make these big life decisions between two big snacks. Like, oh my gosh, what do I want, a fruit roll up or Cheez-It? And all. All. It did just help me feel better. I think it helped me became a better person and helped me think positive and not be like, Oh, I'm never going to get this right. It helped me not give up and help me become a better person. So that's why my slogan is Cheer positive. Think positive. Like I only feel good and I hear better and I think positive. And I'm like, That was really hard. But I did it. But Dr. Don, he was with me for so long, and then he came into my the 13th birthday, my bar mitzvah. He came all the way from America to Israel. So that was a big moment. But he's really been a big part of my life now. I was so glad I got to have that interview with him.
Carrie: [00:12:10] Yeah, well, I'm glad that your parents did all that research ahead of time to find a great place for you to get your cochlear implants and have the follow up care that you needed afterwards, too. And to have a it always takes a village of people to surround you when in this community. So you found it.
Chezi: [00:12:33] Actually, I remember Dr. Don in an interview. He, my dad and mom were very protective then so they answer that a checked Dr. Don out, which I thought was kind of funny. So they're like a madam. And I'm like, okay, what are your qualities? What what we do? What is your main goal? And that after that, everything when I was history, I become a better person in my healing was way better.
Carrie: [00:12:59] Good So kind of moving into your So you lived in the United States for the year for 11 years, right?
Chezi: [00:13:07] Yes. So when I moved to Israel, 12 and a half.
Carrie: [00:13:10] Okay. So how was it going to school in the United States?
Chezi: [00:13:16] Well, to me it's like really different because in the United States at school, I'm speaking my first language, but also, like all the teachers knew about my hearing loss, I knew how to dealt with it. They knew that I have a microphone. They knew that I got tooken out for speech and they knew that I was it was a call for me. And of course, they were teaching me my first language. So it was way easier. And I had like there were a few other kids in my old school, one kid in my other grade that has a hearing aid not a member thing. It's always nice to know someone that who understands and knows what it's like to learn enough hearing loss. And so it's way different than I expected. Like the first year I came, it was a new beginning. And then I'm like, No, now. The second year as a new beginning because the first year Corona happened and one it was on Zoom two, I was learning a different language everyone was in. It was way harder for me because of my hearing. I'm like in the first row of the class and so many computers. So the internet broke off. It was way harder. But really, to me it was the second year it was my beginning and it's when I developed the new words and understood everything and with my hearing loss, I finally did it. And then the first three years I did open, which means like you basically go put off class and you learn new words in a different language and sentences and helped you. So after three years, I'm on my fourth year now, I'm going to Israel and I still have a little hard time, but I can say that I now able to have a full conversation and I have managed. I pulled through.
Carrie: [00:15:00] Wow, that's amazing. So the different accommodations or supports that you ask for because you're learning a new language and then you have your hearing loss on top of it.
Chezi: [00:15:12] Yeah. So besides open, I've had I go to something called Shema where there's other kids like me who have hearing loss different ways. If it's a hearing aid, if it's I forget what's called the mic that you put on your head and you can hear.
Carrie: [00:15:30] Baha yeah.
Chezi: [00:15:30] Yeah. Or if it's a cochlear implant this I go every once they say I'll be going tomorrow because it's Tuesday anyway. So it's so great to have all these kids that are like me, different age, but we're all friends and they're like me and it's so great. And that's something I really like to do because open but also I don't know if I mentioned, but I have a twin brother. My twin brother Gobby were identical, so people say we always look alike. So I'm always like, Didn't I just see you? I was like, No, that's my twin brother, Gobby. So he's a main part of my life. He's helped me. So if I don't understand anything, go translate and he'll make sure my hearing is okay and that nothing's wrong. So Gobby is also a big part of my life helping me. And even though I don't say it to him, he's really an amazing brother.
Carrie: [00:16:21] Wow, that's great that you have all of those supports and then that group of other students just like you, too, in Israel that you can connect with. And so do you have special like do you have special tutoring or do you use like assistive technology in the classroom, like a remote microphone or anything like that?
Chezi: [00:16:44] Well, I do use a microphone. It's called a mini mic. So it's like the pompom is that you say the thing you put on your head, like, that's metal. It's like that. Exactly. Except when I press the button on, I just hold my stance for 3 seconds and then it goes straight to the mini mic and the teacher will put it on it top of the shirt, whatever he or she's wearing. And I just feel way better. Like all of his or her words go straight to the microphone and I hear way better. I'm about special tutoring. For the last three years I went to AV, so that's like a speech therapy for me. So in Israel and then I'm from Shima that I go to every Wednesday. I had a tutor every Monday.
Carrie: [00:17:38] Okay, well, that's great. So I guess, like, kind of thinking about you now as a teenager, and I am an educational audiologist, so I work in the schools with a lot of kids from preschool all the way to graduation. And I know that the teenage years can be tough for anyone, but especially when you have a cochlear implant or your deaf or hard of hearing. Do you have any advice for teenagers who are out there that might be deaf or hard of hearing?
Chezi: [00:18:15] My advice is. Don't give up. I've always believed that life has its challenges, even if it's a challenge to the whole life, or just a time when things get tough. Life has its own challenges, but if you can climb over it and master it the right way, only like greatness will come to you. You will achieve only great things and you can do a few in a different way. So for me, I write my own songs and I just put out my own personal experiences for my hearing loss or how it affects me. And I just write it down. And to me that's my achievements. I'm writing songs, but I'm also sharing it on my podcast, my hearing thoughts, or I'm a few people I know are using it, and to me that's like my way of achieving it. But also I've had some challenges like having hearing loss and moving to Israel at 12 years old with learning a new language, especially with hearing loss. Those are my challenges, but I'm sure I have many more to come, but I will get through them. But to anyone who has hearing loss with a teenager, things get tough, but it's worth it to get through the challenges and everything will be okay. Trust me, I've had my share of trouble.
Carrie: [00:19:32] Well, that's a great mindset to have, and I love that you have an outlet of writing songs to get your emotions out there, but to be able to share with other people too, who may need the experiences that you have and share. So getting to your podcast too, I love talking to other podcasters and I know you have a podcast on Spotify called My Hearing Thoughts. So what made you start this podcast?
Chezi: [00:20:06] So it was all on a Saturday morning, but Saturday afternoon, but we call it Shabbat. I was with my dad. We were just chilling. It's this was like in the afternoon and I was like to my dad, Hey, Daddy. Hey, Dad. I want to have a more way to, like, end these questions. I always just ask questions when I meet new people or some of my friends about everything, about my hearing loss. And I'm like, How can I end it? How can I have a way? What if they ask questions? They just go to a website or something and they have all the answers from me. My dad's like, Why don't you make a podcast? Your uncle has a podcast. And I'm like, That is a great idea. So the whole rest of the day, I was just with my dad and my mom thinking of podcast ideas and I'm like, I want something to say about my thoughts, what I think and what I know of it and my perspectives, but also like something that mentions, Oh, I have a hearing loss. So that's how I came up with my hearing thoughts. And in the beginning it was just about saying my perspectives from each thing on how I listen to music straight to my implant, like Bluetooth or how I swim or how I sleep, or how I read or how I go in the shower or how I listen in the class or in big crowds, in stadiums, and eventually to also my music, the songs I write, because I also put my feelings through experiences of hearing loss or just regular trouble that I've had and challenges that go through my music.
Chezi: [00:21:41] And I also talk about that on the podcast, on my hearing thoughts related to my hearing loss and. Now, recently, I just like I've been working on my songs and trying to find those challenges of making loss. So I just took a break from my podcast, but I'm now in back four new episodes every Sunday. But anyway, but my music really, to me, that's why I want to do my podcast. I want to get. Answers of. People have asked me about my hearing loss out onto my podcast. So listen, instead of asking me, but also my music. So I switched one episode, and normally in the music episode I did, I'm like, Please share this. It really means a lot to me. I want to grow up to be a singer songwriter and I want to inspire people. And I still do that. I still do that outside of podcasts. Well, now I grow into not just being by myself. I have on my podcast segment. So do games or do a segment about my song I write. I will do a segment about my hearing loss or a question someone asked me or I at the bottom of my description, there's a link where they can send a voice message and I play on my podcast.
Chezi: [00:22:54] But now what I really do is I, I realized a few months ago this is all wrong for my podcast like you do. I want to get other perspectives of hearing loss. I don't want to just get mine. I want I ask people, what is it like for them to break down the hearing loss barrier and what they think of hearing loss and what they how they feel about kids have hearing loss. And I try to get other perspectives, but I ask like I also get my family and friends on the show and ask them what the how their life was for when I came in the picture. And I really try to get those messages out with hearing loss. Be who you are, Don't give it. Everything happens for a reason and I try to get other perspectives out. And that's what I've been doing lately. And that's also one of the reasons why I'm really glad that I'm on your show, that you reached out to me because I'm getting my own perspective out on your show. And it can grow not just your podcast, but my podcast more. And we can help people hearing loss more and we can spread a message. So that's also a main thing about my podcast I love.
Carrie: [00:24:00] Yeah, No, I think that idea of having the everyday life questions and answering those is so important because those are the question that parents who, you know most of the time parents who have a child who has hearing loss, this is new to them because they that that's the first experience they've had with hearing loss. So for you to be a teenager thinking about your everyday life and the questions that you get every day and answering those questions in these small, thoughtful ways, and your podcast, my hearing Thoughts, is going to be a great resource for parents, for individuals who are deaf and hard of hearing for teenagers, for young kids, and it really impacts a lot of different people. So thank you for putting all of that out there, because I know you have so many episodes already of, you know, advice and your own hearing thoughts. That's but I love expanding to other perspectives as well.
Chezi: [00:25:07] Thank you so much. That really means a lot like something I'm putting into. A lot can just help and make a difference.
Carrie: [00:25:14] Yeah, well, as we kind of wrap up today, is there anything that I didn't ask you that you had wanted to share today on the Empower Your Audiology podcast?
Chezi: [00:25:28] I actually wanted to ask you if it was okay, your hearing loss. I don't know if you explained on your podcast, but I'm curious to know, like during your hearing loss journey, was there any challenge that you went through that you think that's like? Something big that you could also take out as a message, like to me?
Carrie: [00:25:53] Yeah. I think your message of, you know, not giving up and and staying positive is is a message that is important to me as well. And that's kind of why I have the name of EmpowEAR Audiology. I wish that I would have had someone like you that was giving advice when I was younger. And I think that's probably one of the I think important takeaways for me is growing up, I never knew anybody else that was deaf or hard of hearing, and I thought that was hard. And I grew up in the Cleveland area as well, so south of Cleveland. And I think being able to have connections with others and know that you're not the only one out there who is going through this journey and your perspective or your journey might be different than somebody else's. But knowing that there's somebody that has a similar perspective or similar experiences, that is really important. So I think that would be my key takeaway is that connection piece.
Chezi: [00:27:07] Yeah, I totally agree with you. Yeah.
Carrie: [00:27:11] Well, I just want to say thank you for spending some time with me today sharing your hearing journey and this podcast and your willingness to share your everyday experiences and navigating life as a teenager who has cochlear implants is really going to help others. And thank you for your podcast, My hearing thoughts, and I would definitely link that up in the show notes today for anyone who would like to follow you and your day to day experiences and everything that you're going to do to continue to expand. So thank you for being a part of today's podcast.
Announcer: [00:27:53] Thank you so much for having me on the show. This has been a production of the 3C Digital Media Network.
Episode 51: empowEAR Audiology - Dr. Chad Ruffin
Announcer: [00:00:00] Welcome to episode 51 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Ear Audiology Podcast. I'm really excited to introduce my guest today. I have Dr. Chad Ruffin with me today. He was born with a severe hearing loss and he is uniquely equipped with the skills and experience necessary to improve the lives of hard of hearing patients. Dr. Ruffin completed surgical training at Indiana University, one of the most rigorous otolaryngology residency programs. He also completed advanced training and ear surgery and cochlear implant research as a faculty physician at Indiana University. He is passionate about using his journey as a deaf patient, surgeon, auditory neuroscience scientist and hearing technology innovator to help others succeed with hearing loss. So, Dr. Ruffin, thanks for joining me and the empowEAR Audiology podcast.
Chad: [00:01:44] Thank you very much for having me. Carrie I'm excited to be here. And that was quite the introduction. I'm really appreciative of it.
Carrie: [00:01:51] Well, I feel like in the last few years I circles, I keep kind of coming together and it was great to finally meet you in person back in May at the American Cochlear Implant Alliance Conference.
Chad: [00:02:08] Yeah, I know we've been talking for a bit, and when you came up after I asked a question, I was super surprised. It's been great meeting you and chatting from there.
Carrie: [00:02:18] Yeah. So. Well, thanks again for being a part of the podcast and I'm really excited to find out more about you today. But I thought we would maybe start out with going back on that trip down memory lane. And can you just share with our listeners a little bit about your own hearing journey and how that all started?
Chad: [00:02:45] So I think there was probably a revolution in hearing health care for children who are born deaf. But back in the late sixties and seventies, as diagnosis and treatment started to open up, then I was born with a severe hearing loss, and I actually wasn't identified until around three years of age because I wasn't talking. I didn't respond to my name was called behind my back, but I did follow commands and I understood people because I was a very adept lip reader. Indeed, I did so well that experienced audiologist pediatric audiologists didn't think I had a hearing loss. And so my mom eventually took us down on a four hour trip away from home because I was I was born and raised in the Louisiana country and we went to Baton Rouge for an auditory brainstem response test. And that's where we found that I had a severe to profound hearing loss. And I was fit with hearing aids and given lots and lots of speech therapy. And by the time that I entered kindergarten, I was probably ahead of my peers for reading and talking. I used amplification up to around the point of fourth grade as the only accommodation, if you will, or treatment for hearing loss. And then my hearing had a sudden drop in fourth grade and I started using wireless FM systems or what's the modern name for these things called.
Carrie: [00:04:24] We call them DM sometimes digital digital modulation system or remote microphones. There's so many names and acronyms. Right?
Chad: [00:04:34] Right. So I started using that. And with that device, I was able to understand the teacher, and I did really well in school. My parents were a little bit different because they were entrepreneurs, and even though they came from a very either impoverished or middle class background, they did very well for themselves and super resourceful. And they're the quintessential parents that you see of successful children with hearing loss, meaning they go out and they find things. If something isn't followed up on, they will follow up on it. And because of that, I was successful and. I was offered a cochlear implant in Memphis, Tennessee in 1989. I was about eighth grade at that time, but I was one of the one of the first of the computer generation. So I grew up on a computer I had one since I was in second grade, and I thought that it was probably a little bit too early to consider a cochlear implant because, you know, technology will get better. And I didn't get one until I was in my later year of college because I just my hearing just worsened and hearing aids were no longer beneficial. The remote microphone still worked well, so it was the only accommodation that I had, really. And I had the implant when I was 21, and it really did change my life. I was able to participate in conversations that I could not do before. You know, before an implant, one on one conversation was very difficult and much less a group. But now I can participate in a group conversation. And it was about then that I realized that I had the first inkling that it's not really about how much you hear, it's more about how well you communicate. And I probably shouldn't have gotten I probably should have gotten a cochlear implant when I was in eighth grade because I would have had a better social circle and probably better social skills through my life. And it would have made it probably would have made a demonstrable difference in the trajectory of my life. Police. On. Can we do that?
Carrie: [00:07:02] What? Good.
Chad: [00:07:03] No. What? Sorry. Then I turned you off. Sorry.
Carrie: [00:07:06] That's okay.
Chad: [00:07:08] Let me figure out how to meet this. Okay. Yeah, it was. It wasn't until I got my cochlear implant when I was 21 that I realized I probably should have gotten it earlier because I realized then or had the first inkling that it's not really about how well you hear, it's about how well you communicate. And you don't need perfect hearing to be able to communicate well. So I think that if I received an implant when I was in eighth grade, I would have had a better, more normal social circle and better social skills as I got older. And that probably would have parlayed into some different choices that I would have made for my life even at that early of an age. So. I didn't get my cochlear my second cochlear implant until I was 31, and I think we'll probably end up coming back to that later in the interview. Why I got that and how that changed so.
Carrie: [00:08:14] Yeah, well, that's a great history. And I love how you said about your family, your parents, that they were so resourceful. And that's a big key for success for a lot of our kids who are deaf and hard of hearing is having that family support along the way. And it sounds like you definitely did. And I'm impressed at age three and you were able to catch up. So you must have had some really good therapy to help you learn how to catch up with those auditory skills and communication skills at that point in time, too. But we see our kids now who have the newborn hearing screening and close that gap so much quicker than we did. I wasn't identified till age four, so I had a lot of catch up to do.
Chad: [00:09:06] Yeah, I had twice weekly speech therapy and then Michael and my boyfriend, who was the first kid in North Texas to get a cochlear implant, had much more frequent auditory verbal therapy, and I would say it was formal or AVT meaning was more than just getting the words, which is what I did and talking or doing actually forming the words correctly. Michael had a had a much more intense listening and learning to talk and hold a conversation, all of those skills. And I do think that his earlier intervention does play out a role in terms of how we verbally process the world. Mm hmm.
Carrie: [00:09:57] So you talked about you got your first implant around 21 and you were in college at that point. Did you know that you wanted to be an otolaryngologist at this point?
Chad: [00:10:09] No, I was in Backwater. Louisiana is where I grew up, so my exposure to the world was pretty small. And if you wanted to be successful, I think a lot of people thought about going to college and then becoming either a doctor or a lawyer. I don't think we really had much exposure to MBAs. So I think that my field of view was somewhat narrow. And I really I love science and I like the art of medicine and the art of bringing a science together with the real world, which kind of also happens with flying, because I'm also a pilot and. So I kind of discounted medical school after getting my implant because. I wasn't sure that I was ready for the level of commitment that it requires. So I taught high school for a couple of years and then I was in ultrasound tech for a year, and it made me realize that medical school really was probably the right choice for me. And it was been it was a very interesting journey because back in 2003, there really weren't many deaf people in medicine. We had the ADA passed only ten years before, and I mean, that's actually kind of shocking to me now, being the age of 45 and understanding that culture. Cultural change takes a while to come along, and it's kind of shocking that I started medical school at only ten years after the passing of the ADA, and some of the rights that people take for granted now are coming from the first people who went through medical school, like Dr.
Chad: [00:11:51] Phil Zazu and someone in my generation, Michael OGenny, who went to court over some for some of these rights. So it was a very inhospitable world, you know. So I remember I had a choice of medical school to go to, and I ended up going to a public one because I thought that the accommodations would be better there, but they actually weren't. And. After I was admitted to medical school, the dean of the medical school found out that I had hearing loss and was deaf. And honestly, it freaked them out and they seriously reconsidered my admission. And I went into a meeting with a lot of different people. And really, I should have had a lawyer present, but it went well. And I told them how I would plan to manage X, Y and Z problems that may come up. And what I remember one faculty member came. Said to me in the meetings like, Well, what happens if you go through all of this training and. And you're not able to perform clinical medicine. And I just looked at it. I was like, Well, medicine doesn't march forward without great research, and that is still an option.
Chad: [00:13:17] And so I went through my first couple of years of medical school, and I decided to be an ENT or Otolaryngologist ear, nose and throat doctor after I completed a two year research fellowship at the University of Washington. It was a fantabulous experience because that was there where like my. I was exposed to so much creativity. I mean, top class students in engineering. And I got to be in one of the premier laboratories for cochlear implants in the world. And it was just a truly amazing experience because it was there that I was able to see that the world is not a path you follow, but you can make that path. And so I really enjoyed cochlear implant research. At the time I was involved in understanding how implants changed excuse me, how the auditory nerve encoded speech, both normally and under electrical conditions with the electrical hearing of a cochlear implant. And that was super fascinating to me. At that time, everyone thought that it would be if you can produce a perfect encoding in the auditory nerve, that hearing loss is fixed. And it was a very exciting time for implant research because we thought that we had come to a model that would help us do that. And ultimately it didn't. But but that was my first exposure to cochlear implant research is how the how do we best encode the sound of an implant.
Chad: [00:15:04] And because I really enjoyed that, I decided to go into ENT because it was clinically it fit together. It's a really diverse field. Surgically, there are all kinds of different technologies you can work with, and you are working also with the science of communication and voice surgery for the communication of voice. So the interesting thing is I thought I had my implant. I thought that the challenges that I had getting to medical school were behind me and that wasn't the case, unfortunately. ENT is one of the routinely one of the most difficult specialties to get into because it's exciting. The lifestyle is great and it does well financially compared to other specialties. So it took it actually ended up taking me about 30 interviews over a couple of years to get in. I had to do a second internship. Another research fellowship to get in just to prove people that I had what it took. And that was really the first time that I realized that I was different from other people because I had given it my all. I had done a research fellowship. I think that is most analogous to doing a road scholarship for medicine. And I graduated very high in my class. But at the same time, people were not listening to reason and didn't believe that I could do this.
Chad: [00:16:43] So, I mean, like that is that was a pretty traumatic blow It took about. It's probably taken some now in my life to move past that in a meaningful manner. And it was the first time that I ever labeled myself as disabled or different. And it was then that I started realizing that you can hear everything in speech in terms of the lexical content or getting the words. But there's a lot more to communication that is not available to people with severe and profound hearing loss. And that's really what's changed the trajectory of my career in terms of what I what my mission in life is, is not to give someone perfect speech. We can't do perfect speech perception. We can't do that right now, even in the best outcomes of cochlear implants. And we even with better hearing aids, better cochlear implants. We are not making a dent in how deaf and hard of hearing people achieve meaning. The socioeconomic status of deaf and hard of hearing people hasn't changed in the nearly 40 years that the ADA has been passed. So there clearly is something more, and I think there's this missing piece of turning the conversation more towards how we help people communicate better and address gaps in care with better counseling. Because even the best hearing aids and best cochlear implants are not cutting it.
Carrie: [00:18:22] Mm hmm. Yeah, I agree with you there, especially being a cochlear implant user, too. There's much more to speech perception than the cochlear implant, and we'll get into that to how we can better manage that communication. But just kind of taking a quick step back to that medical school and going into ENT. Do you feel like that I know you said it took me a while to get to the place where you're kind of okay with the discouragement that you had, but do you feel like that was a springboard to maybe having more grit and resilience and passion for what you do because of that?
Chad: [00:19:05] Well, that's a grudging yes. I mean, I would never want to go through that again. But. Yes. I mean, I have a patient who is also a surgeon who flew in from across the country. And because she is a surgeon, she had been to. The best resources for her situation that. You know, the world could offer. She'd been to all the big centers and she said that no one would quite talk to her the way I did about how various ear problems affect the quality of life and mental health and. Accommodations and the whole spectrum of things. So, I mean, like that's something that I routinely see. And in the exam room, like when I have couples with you have when I have a patient with sudden hearing loss and they have their significant other with them, I will look at them and tell them I'm like, This is going to be difficult for you, too. It's going to be a big adjustment. And we address mental health issues. Make sure that they get counseling if they need it. So I think that hearing health care has historically not been great in America because audiologists and ENTs are not encouraged to play well together for a variety of reasons, both what's in the law and the just the history between the two specialties over time. And I think that really needs to change and we can accomplish a lot more if we move beyond that.
Carrie: [00:20:53] Yeah, well, I'm sure your patients appreciate the insight that you have as a cochlear implant user from a personal perspective. And then your professional expertise is, you know, obviously amazing. So it helps to have both of those. And I kind of had a similar experience going into grad school or in undergrad where they called me in to the clinic director and the dean called me in and said, I don't think some someone with hearing loss can become an audiologist. And I was like, What? Like wait. And so, I mean, I didn't have to go through, you know 27 other kinds of interviews, but I still left that meeting devastated, thinking what, like, this is our profession and you don't understand how to make some accommodations and supports. And I really wasn't ready to act. I was shocked and I'm not ready to respond with a good answer at that moment in time, I had to go back and process it and make another appointment and share how I could navigate through this. It might not be different. It might be a little different than my peers, but I can still have this perspective that my peers will never have.
Chad: [00:22:23] Right. Right. I mean it. Let me think. I think that coming from the background of my entrepreneurial entrepreneur parents and the confidence that that instills to be able to do something and being successful at every other part in my life, I question myself like, am I going to be a great surgeon? I mean, do I have that ability? And when I was out of training, you know, I mean, like, I still I did my surgeries. They went great. When I got around to cochlear implants, it was kind of like. Crazy, to be honest with you, because I did my first implant surgery as an attending and the patient calls me the next day is like, I can still hear. I can hear water splashing in my ear. And I was like, Well, I hadn't planned on that, but I that is awesome. And. I've since learned that my hearing preservation rates and implants are as good as they come. They're actually ahead of published reports in the literature, and I kind of learned why that is in terms of or suspected why that is. But it's great to have like a different and fresh eye about things and the diversity that having a different background brings to a job.
Chad: [00:23:57] Because I can tell you that I do my implant surgeries differently as a result of my own perspectives and thinking about it. So, for example, I mean, a lot of people don't get cochlear implants because they're scared to death of losing their residual hearing. And one of the reasons why I try to preserve hearing on every patient is to to allay that fear, even though in the end. If you had to calculate the percent of variance or how much preserving residual hearing helps the average person, it only contributes to 10% of their final performance. It's not much, but it contributes to a lot in the community. If you can tell them, you're probably not going to lose your hearing right after surgery. But I can't tell you what's going to happen in the next year. But right after surgery, it's probably going to stay pretty close to what you had before if I do it. And. Yeah. It's just it's been it's been fantastic to move beyond that initial huge blow to self esteem, you know.
Carrie: [00:25:05] So yeah well I can, I can relate from an audiology perspective that it brings a different perspective to the patients and the families that we have the opportunity to work with. Well, I thought I would go through some different common questions you might get as a CI surgeon with cochlear implants, but I thought I would ask you first. Do you is there like one question that you always get because you are a surgeon with cochlear implants where it might be the most common question.
Chad: [00:25:41] From my patients or in general from anyone.
Carrie: [00:25:44] Like just because you have a cochlear implant and you are a cochlear implant surgeon. Is there like a question that people are always curious about?
Chad: [00:25:57] On. I think it probably you can divide it into two categories, like people who are in the office with me and then people who talk to me outside the office. In the office. I think it's kind of funny because people are like, do implants work? And I'm like, Hello? I know I'm relatively a star performer, but I'm talking to you. So I think that's probably the most one that I get. The one outside the office is usually students coming up to me and saying they want to go into medicine or they want to go into surgery. And I think right there, they. Let me back up. The most common question I get outside of the exam room is from students and parents who are wanting the best for their child or wanting to go into medical school or become a surgeon. And they will ask me, So how do I hear in the operating room. And a lot of these people have not even gotten to medical school yet. And I really just turn the question around and I said, you're. That's not really the question. Being able to communicate in the operating room, if you have some hearing, was probably going to be fine. You may require some accommodations and you may have some resistance. But the real question is how do you communicate with people? And I don't think that people realize the intensity of communication when you are in medicine because you are talking anywhere from someone who has the very, very low or no educational background.
Chad: [00:27:43] Maybe they're illiterate to someone who is a CEO, you know, and those conversations happen daily. So you have to have the communication skills to be able to rapidly bridge all that entire spectrum an trying to get the students to have some insight into that. Really, anyone is really difficult and I have to be really careful when I try to bring up like how they may communicate or something. I'm like and I feel like I have that responsibility because no one ever told me, you know, like I was probably a little weird in my twenties, to be honest with you, as a result of my hearing loss and interpersonal skills. But no one ever really took the time to say that and to help me understand. What they meant because this is not hearing loss is an invisible diagnosis. The ways that it affects people is invisible. There's no tangible quality to it that you can just point to outline and this is how it's affecting you. So there's no language for laypeople or really even professionals to describe some of the issues around hearing loss other than language deprivation or social deprivation. And that is something that I think is a really hard skill to have, and it's still something that I'm working on in developing with both my patients and students. So.
Carrie: [00:29:15] Yeah. No, that's that's good. Kind of that other perspective that people don't get because it is invisible and it's hard to figure out what some of those nuances are along the way. So I'm going to just ask a few other questions. As for a surgeon, so one question would be. Since you are a surgeon that has a cochlear implant. How would a patient or a potential patient choose a surgeon? What? What? What should they be looking for in a cochlear implant surgeon?
Chad: [00:29:54] I think I would probably have to answer that based on if I needed a cochlear implant, what I would do. I would find first just the technical qualifications of the surgeon. I would look for someone who has a hearing preservation rate of 90% or greater. That tells me that they had the skill to get the electrode in the exact right place at the cochlea and that they care, because not everyone does. The second thing I would look at is not just the surgeon but the audiologist. For me, I would want to walk in an office and see that hearing assistive technology is offered and encouraged to patients because 80% or eight out of ten patients will get better with a cochlear implant, get better hearing, but about 20% won't. And you really have to be prepared to be in that 20% where you don't get increased benefit relative to your hearing aid. So I think that having a surgeon and an audiologist who looks at that big picture is super important. I think it shows that they have the foresight and the care to invest in these resources for their clinic. I think also I want a team that understands what I do for work and can relay to me what it's going to be like after an implant and help me prepare for that, for example. So some of my patients are fortunate to be able to work remotely and they have questions about, Well, what am I going to do if one of my ears is down and I really need that ear? How am I going to hear, you know? So I think that having a surgeon who understands that and an audiologist who understands that as well is really, really important. So you have to look at the whole patient when you make these decisions. And I think that is super essential. Mm hmm.
Carrie: [00:31:59] Yeah. Because I think sometimes the layperson thinks that you get a cochlear implant, you get it activated and you just go and there's that was the easy part, right? Everything afterwards is the hard part of getting a cochlear implant. So I think that is great advice of looking at a clinic that that is looking at the whole person and the audiologist and surgeon are in good connection with each other and communicating with each other to. What? I'm going to ask another question. Are you ready?
Chad: [00:32:34] Sure.
Carrie: [00:32:37] All right. So should someone wait? If they are a true candidate for something better to come along? So they went through the whole like consult and the the clinic says, Hey, yep, you're definitely a candidate. And then the patient or the family is like, Well, I think we're going to wait because maybe stem cell research or hair regeneration or technology is going to get better.
Chad: [00:33:10] No, I don't think people should say.
Carrie: [00:33:13] Yeah. What would you say.
Chad: [00:33:16] For stem cell? Hair cell regeneration therapies? I would say definitely do not wait there consistently. Is it going to be another ten years? Another ten years? So the other thing is, if you're young and you get one of these therapies, say you're in your twenties, you have another. 50 to 60 years of life ahead of you. And that's a long time that a complication from one of those therapies could develop, you know. For some medicines, we don't see their complications come out until like 30 years later. So this is a real this is a big deal if you're in your sixties or something and, you know. These therapies were actually available. It's a different story, but there's nothing really on the horizon horizon for the immediate future in terms of benefits. There's only one. There's only one important advancement and that may be coming out. And I honestly don't know what the status of this is, is having steroid eluting electrode arrays. And the reason that's important is when we do implant surgery, we can give you steroids around the time of surgery. We can put steroids right by the electrode. But there's that's really actually absorbed pretty quickly when we do that to try to preserve residual hearing, decreased scar formation inside the cochlea. And because that clears up so rapidly.
Chad: [00:34:54] The real loss of hearing, if it occurs, happens in the next year usually, and as a scar builds up. So there have been some steroid eluting or steroid releasing electrode arrays that are designed to release steroids for a while until the body stops its activity against the scar formation. And that would be the only thing to wait for in my mind. But even then, people who have residual hearing and they keep it for a while and they lose it, they're still going to be doing better than they are with their hearing aids. So it really depends on how long are you going to wait, because a lot of people don't realize how their quality of life is meaningfully impacted. And to be honest with you, I don't. I, I don't think that I would wait. But that decision may be different for someone who has a lot of residual hearing and maybe they're a musician and they need that actual acoustic hearing that could be benefited from a steroid eluting array. But at the same time, they could get an implant in one ear, a standard one, and then wait till they implant the other ear. It really, really just depends on the patient and what their priorities are.
Carrie: [00:36:18] Yeah. Sometimes being in more pediatric educational, I get that question from parents a lot. And for I think children waiting isn't really a good answer if they're truly a candidate because of the neuroplasticity of the brain and language development and education that goes along with it. But I see a point for an adult who has a lot of residual hearing and maybe going bimodal might be a great option to.
Chad: [00:36:49] Right. You bring up a good point because kids with hearing loss, if they're born to hearing parents and they don't sign, that is the goal is not hearing the goal is language development. And they have to have access to all speech and language. And if they need an implant, they need an implant. If the parents sign is a different story, especially if the kid is embedded in the signing environment, because they will be getting language, the community with which to which they're exposed to may be smaller, but they're still going to be developing language. And that's a good thing. Mm hmm.
Carrie: [00:37:24] All right. You ready for another question?
Chad: [00:37:27] Bring it on.
Carrie: [00:37:28] All right. So you touched on it earlier, but what are the limitations of a cochlear implant?
Chad: [00:37:37] So the limitations of a cochlear implant, I think you can think of it as really as we hear. Because we hear changes in pitch and rhythm across many frequency bands. And the cochlea is kind of like a piano keyboard. It has a spatially separate sound out from low to high frequencies. And a piano keyboard has 88 keys. And we hearing people can very easily tell the difference between each one. They can tell whether it's a happy or sad note. They can tell whether what the melody of something is. If you just leave, pitch in there, remove all the timing cues, meaning each key is pressed for the same amount of time. There is a defined interval between each key presses called asynchronous melodies, and people with cochlear implants can't hear that. Identify those well. So music is primarily heard or pitch is primarily heard is changes in volume across several frequency bands, and that is a big limitation of cochlear implants. They actually do really well in quiet for picking up words, but when you start moving over into complex listening environments, noisy speech, particularly when that speech is competing speech, then the pitch information becomes crucial. You need to be able to segregate various audio streams based on their pitch, and that's how normal hearing people can pick out a voice can pick a voice out of a crowd. They hone in on that fundamental frequency, they pick that voice out, and their brain will silence or become inattentive to the other voices. On people with cochlear implants because they don't hear pitch well, they have 16 to 24 electrodes and really you need about 64 if you're going to start getting up into being able to hear pitch better.
Chad: [00:39:46] But it's not possible with the cochlear implant to deliver that much information. It's a different story. But because you don't hear pitch, you don't hear music. Well, you don't hear speech and background noise as well. I think those are the two main limitations for implants. That also translates into another limitation, which is we think of hearing speech as hearing the words. But really they're and that's called lexical speech. But really, there's an entirely other different property of speech, and that's called indexical speech, where we hear the emotion, the tone, the gender, who the identity, who is speaking. Are they healthy? Are they tired that day or are they physically fit? You can tell all sorts of things, dialect where a person comes from, how much money they make. You can tell all kinds of things from Indexical speech and people don't hear people with cochlear implants don't hear an indexical speech problem. Excuse me, Do not hear Indexical speech cues very well. And I think this leads to some of the communication issues that we have because normal hearing people, they are enveloped by another person's voice. It's like going out and looking at a mountain vista. There's no there's an emotive quality to it and there's no processing of it is something abide that hits them and they're processing both the words and speech at the same time. And even the words. People with normal hearing don't hear an individual words, thoughts pop in their head. They have a vibe associated with that based on the indexical properties of speech.
Chad: [00:41:26] And people with cochlear implants are using so much energy to hear and trying to figure out every individual word. And that's just the word that they may miss out on these indexical properties that communicate what a speaker means beyond what they actually say, the hidden part of speech, so to speak. So this is where the communication problems of hearing loss arise from is not having the complete picture. And that is not communicated to our patients as well as it should be. I think it's one of the reasons why people find it hard to access a higher career as competitive careers because they're not explicitly taught this information. The deaf community in it's. In his desire to be seen as equal on. I think wants to believe that you can replace this information visually. But we know that that's not the case, that people either don't identify it or if they do, they don't process it in real time just by seeing the emotions on someone's face. So I think that we're having a greater insight into understanding that how well someone hears emotion in voice has more to do with quality of life than actually how much the implant benefits their ability to hear the words of speech. So basically, the improvement in quality of life after your cochlear implant is more correlated not with how well you hear the words of speech or how much you improve, but how well you can identify the emotion in people's voices. And that's a big finding. And it's not really harped on or communicated to our patients enough.
Carrie: [00:43:16] Mm hmm. And on that topic, do you think there's ways that as the professionals, we can teach that differently. Or do you think that's just the final limitation of the cochlear implant as we speak today? Maybe it would be different in the future with advancements in technology, but do you think that some of these skills can be taught to help with communication better?
Chad: [00:43:47] I think that some people naturally get this stuff. I mean, we have different personalities and temperaments and they naturally get this. So not everyone is going to have this problem. So I think that's one thing. And two, I can't tell you how we teach this better to our patients. But I can tell you what I do when I'm in a situation. If I'm not sure what the tone I'm hearing is, I will say, tell the person I'm hearing this. Is this what you mean? And when it's a really complex situation, even in quiet and quiet, I will stop listening to the person and just watch their body language and take a second to take it in. And I also explain to people in complex situations that I have a problem hearing tone and. And this also brings in to a second thing that we don't think about the limitations of cochlear implants is that we're talking about getting the information that expressing yourself well, like having the soft skills is really important. So what I actually found is there are some stressful situations in private practice when we're talking about financial issues and accounting issues where, I mean, that is that affects like my pocketbook at the end of the day, you know, like how much I'm able to live on. So that's super stressful sometimes. And I've had to learn to be to be very careful, even even if I'm very upset inside, to not let it come out in my voice, because I've since learned that hearing people hear that very different, where it's like mildly upset to me, like it is like cutting and abrasive to the hearing person. And you laugh, but I mean, like, it's something I've had to learn.
Carrie: [00:45:38] Know. Well, that's a good insight to have about yourself. But you bring up another good point that I had a question about, too, is advocacy and being able to kind of share, you know, with others when you do, you know, need someone to repeat or you want to know their tone or things like that. What advice do you have for individuals about being a better advocate? Because that can be really hard and like you said, a stressful situation or with people you don't know well.
Chad: [00:46:09] I think that on. Advocating for yourself is difficult because even though there's a legal framework around it now, at the end of the day, it's just someone else asking another person for help. And I think going in there with the right frame of mind, that is the initial most important thing. No one owes you anything. I mean, at the end of the day, no one has to provide you anything in terms of like emotional support or. Yes, they will have to do that. I mean, what I mean by that is you can't go Yes, you have the legal rights, but you can't go in expecting someone to drop everything and help you, you know. Other people have lives, too. The second thing is, most people want to help. 95%, 19 times out of 20 people will help you. But you have to be able to make exactly make your need known. Exactly. And tell people how they can help. For example, these are two different science findings and not necessarily correlated. But they struck out to me because if you look at people with hearing loss, women out earn men. And usually there's a 20% difference where men are outearning women by that to $0.20 on the dollar. So in hearing loss, it's reversed. Also, if you look at how people manage hearing loss, women manage it differently. Men will say, I have hearing loss, Women will say, I have hearing loss. I need you to repeat this for me. So telling people exactly what you need is really important because. People can't figure out your problems for you. You have to think about think about it. The other thing that I would do is you don't ask a question unless you know. Sorry, tell me. The other thing is when you frame a request for an accommodation, you ask it in a way that a person cannot say no.
Chad: [00:48:12] For example, if you give someone a remote microphone and they don't want to wear it, they just say, I'll talk louder or something. They may be your boss and you really can't correct them. So one thing you can say is that. I had this example example with a medical student like I was in that situation myself and I didn't know what to say because of the power differential. They had a medical student come up to me and ask the same thing, and I immediately came up with an answer. It's kind of crazy how getting out of that stressful training environment changes things. But I told the student, I said. You tell the on the attending physician like you are a great surgeon and I want to learn everything I can from you so that I can be a great surgeon, too. And if you are if you don't wear this microphone, then I am spending all my time, time working to hear and not working to learn. And those are too. And I can't become the best surgeon if you don't do that. That's what I mean by asking a question in a way that someone can't say no. The other thing is you need to think What? What they may say. No, no to kind of like set your request up so in a manner which answers their questions or cuts off avenues for denial. And then you need to smile and say thank you because people are helping. You know, if you help open a door for someone in a wheelchair, they usually say, thank you. You know, this is the same thing. So. It's work on their part.
Carrie: [00:49:52] Yeah. I like what you said about practicing some of those responses, just kind of anticipating maybe what someone might say and then practice some of those responses so that they are flipped into a positive way and they can't say no. But it takes a lot of practice and.
Chad: [00:50:10] Thought it does.
Carrie: [00:50:11] Courage really to say it.
Chad: [00:50:14] And it's unfortunate because no kid with a hearing loss should have to practice that their audiologist or their doctor should tell them or point them towards resources. Like, here are the most important things you need to know about your hearing loss and how to manage them. But instead, we have kids, adults constantly reinventing the wheel with every new diagnosis of hearing loss in a vocational age person. So it's terrible.
Carrie: [00:50:44] Yeah. Well, maybe we can. We can change to that.
Chad: [00:50:49] Maybe.
Carrie: [00:50:51] So I'm trying to think if I have any other questions. What do you envision for the future of cochlear implants to be like? Do you have any wishes?
Chad: [00:51:20] So I think my vision for the future for cochlear implants or for people with severe and profound hearing loss is more holistic health care where people are given the tools they need to. Thrive with their hearing loss rather than giving tools for maximum speech perception. It's a subtle difference. Not rather than let me back up on. So my vision for cochlear implants or treatment for people with severe and profound hearing loss has to do mostly with a lot of the things we've touched on today, like getting better counseling for patients because what people need are the tools to thrive with hearing loss. And that's going to go beyond what the tools you have for getting maximal speech perception. Those are two different things. And for example, for today, I mean, I would probably trade 10 to 15% of my hearing now to know the things that I know now, but know those when I was a kid. I think the second thing as far as implants go, I mean, we have as a medical device, we have a lot of things on the horizon which are super interesting. I think the nearest one is going to be the application of deep learning, filtration of noise out of a speech signal and where where people will go into a restaurant and they will hear as well as they do in quiet. I think that's going to be amazing.
Chad: [00:53:04] And these. Things are being developed right now. They just can't be put into a teeny, tiny ear level of processor. The most interesting thing as a medical device, I think has to do with light based electrode arrays where we instead of using electricity that is spreads inside the cochlea and stimulates channels next door and degrades information or degrades the sound of an implant. We're probably going to move to light based arrays that stimulate the cochlea with very fine stimulation, and those may it may or may not involve genetic therapies to make certain parts of the cochlea sensitive to different kinds of light. But those are still very early in their development. I don't know where it's going to take us, but I think right now I think the deep learning algorithms will be really important. I think that there are other things where things that may develop as we get into augmented reality and can have computer assisted interpretation of the environment. For example, kids with autism can wear Google glasses that help them identify the emotions on faces, and that teaches them how to communicate a little bit better. So I think some of those things may come for treating hearing loss too, and improving communication skills. So there's a lot of things out there. I don't know what the future is going to look like.
Carrie: [00:54:44] It's exciting to be part of it and to be on the receiving end of some of the excitement to every time something new comes out. I really excited about trying it out and seeing the difference in the real world, which is fun as well. So is there anything I didn't ask you that you wish I would have that you would like to share today?
Chad: [00:55:11] I don't think so.
Carrie: [00:55:13] Anything else that I that our listeners might be like? Dr. Ruffin, with his experience as a cochlear implant user and as a surgeon. Any advice for anyone?
Chad: [00:55:31] I think I would just tell people to be assertive. You're not the first person to go through some of these things. And having having a an illness or a disability that affects communication, both receptive and expressive so profoundly is hard to overcome. But I mean, like people have done it, you know, and the number of people who are achieving great things despite having severe and profound hearing loss, you know, more and more people are doing it. So it's not they're not reinventing the wheel. So I think the I think a key thing is to seek out people who have had an experience similar to yourself and look in advocacy organizations, because I think that will improve quality of life.
Carrie: [00:56:23] Mm hmm. Yeah, I agree that peer to peer connection of others that are in your shoes really motivates you and gives you a lot of insight too. So I'm thankful to know you as well from a hearing care professional point of view and then also as a fellow cochlear implant user. But we can share a lot of great ideas, but I just want to say thank you for being part of the EmpowEAR Audiology podcast today. It was a great conversation.
Chad: [00:56:53] Thank you for having me. I really enjoy your positive energy and enthusiasm and all the work you're doing. I'm super glad you said hi at that meeting at ACIA in May.
Carrie: [00:57:03] Well, and I'm super glad that you said yes to being on the empowEAR Audiology podcast. So listeners, I hope you enjoyed the podcast today and please share it with others. I encourage you to visit the Facebook page and engage as well. Transcripts for this episode are available on the 3C Digital Media Network website and thanks for spending time listening today.
Announcer: [00:57:26] This has been a production of the three C Digital Media Network.
Episode 50: empowEAR Audiology - Dr. Carrie Spangler
Announcer: [00:00:00] Welcome to episode 50 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome listeners to the empowEAR Audiology podcast. I am going solo today as I am celebrating a milestone episode, The Fabulous 50. In addition to that, I'm also celebrating my birthday. And for the record, not a milestone birthday. This is also the holiday season of gift giving, and I am grateful for the gift of sharing with all of you. And I will talk about in a moment. I am grateful for the gift of hearing. And it's also a time of the year when we're given the opportunity to reflect on what was happening and then the whole year behind us in 2022. Back in January of this year, I bought myself a gratitude journal, which was a simple and powerful way to start the year. And each day it lets you see what is present in your life instead of what isn't. As I reflect back on the purpose of empowEAR Audiology, I am grateful for the grateful is the theme for the 2022 Journey. The lessons and the growth. Looking back on the year, I am grateful for where how your ideology is at and I'm also excited for where and how your ideology is going. As part of the 3C Digital Media Network, whose mission is to connect, collaborate and communicate, empowEAR Audiology has had a successful year living out this mission. I wanted to start this episode with a personal story. It was exactly one year ago when I wrote a blog for hearing Spanglish blog titled Relieved and Grateful.
Carrie: [00:02:05] Journaling the checkpoint for my successful cochlear implant restart. For those of you who don't know, I had experienced electrode migration for my internal device, which resulted in having to be re implanted two years after my initial cochlear implant surgery. I laced up my shoes for the marathon and have had a smooth training year and 2022. Thinking about each Empower Ear Audiology episode, I am reminded of what Rebecca Alexander shares in episode 48. She said Choose to be grateful. Be happy with what you have today and be optimistic about tomorrow. These words hit me personally, as it has been a year in which I am grateful for cochlear implant technology. Well, communication is an important part of my life personally. Communication is a two way street where messages must be both sent and received. It is complex and as humans we are wired to be connected with those around us. In 2019, I realized that oil communication was becoming more and more difficult with the hearing aids that I had. My family and my friends. First language is spoken English. I did not want to lose this connection with them and recognize that I was struggling. I am naturally inquisitive of others, hence why I love interviewing guests and the empowqEAR Audiology podcast. Deciding to venture on the cochlear implant path gave me my natural language back to me. I reconnected with my parents, my husband, my kids, my friends and colleagues.
Carrie: [00:03:59] I was back to being curious and confident, striking up conversations with new acquaintances. I treasure streaming phone calls with my parents on my way to work to find out what they are enjoying that week in retirement. Listening to podcast Am I long drives between school buildings to serve Students who are deaf and hard of hearing was given back to me. Turning up my favorite tunes on the radio or on a streaming device to enlighten my day. When I reflect back on the marathon journey of living with a cochlear implant, I realized the alternative of not pursuing this for my own personal journey would have been depriving myself of the opportunity to continue strengthening the meaningful connections with those I love and those who I will come to know and love in the future. During this time of the year, as we go into the gift giving season, I am grateful for the gift of my cochlear implant, my hearing aid, my assistive hearing technology, my communication strategies. And I am grateful for all of you who support me on this cochlear implant marathon so that I have the opportunity to grow as a human. As I said earlier, this is the 50th episode and I also wanted to hit the grateful button with a year of review of Empower Audiology. Guest And I wanted to thank you all as listeners. Reviewing this past year, I can just say that I am grateful for all of the gaffes that took their time out of their busy lives to be part of an episode.
Carrie: [00:05:44] This podcast would not be possible with without each of you being willing to give up some time and show your talents. I genuinely get excited each and every time I get to have an interview set up and you can visit the website to listen or you can subscribe on Apple, Spotify and Google Play to catch all of the episodes. This may take a few minutes to do a rundown of the 2022 guests, but I hope you are listen as I do a short recap of this amazing year. Grab your phone or a piece of paper and make note of the episode that pique your interest or the ones you must listen to again. So starting back in January with episode 33, we had Dr. Don Goldberg share his journey to becoming an audiologist and the important professional work for the joint committee, an infant hearing and additional professional research projects that he's involved in. Episode 34 Dr. Derek Houston shows about how language impacts children with cochlear implants and a proposed conceptual framework to explain the relationship between language input and outcomes. Episode 35 with Dr. Kim Maher. How to Advocate for Educational Audiology Services When the Service Does Not Exist. And a School District. We had episode 36 with Dr. Christina Blaser talking about the importance of understanding assessment patterns and trends for children who are deaf and hard of hearing when you are the FLP Episode 37 with Lisa Kovacs, a parent, an advocate who works for hands and voices whose motto is powerful, stating What works for your child is what makes the choice, right? She also shares about the different programs that she's involved with in the organization.
Carrie: [00:07:41] Episode 38 Dr. Jessica Sullivan and Dr. Lauren Callender also discuss the impact program, which increases diversity within the fields of speech, language pathology and audiology. And Episode 39, Kayla Gurnard, chief strategy and program officer for AG Association, talks about servant leadership and how each person is a leader with them. In episode 40, Matt Hayes shows his emotional and physical journey of losing and regaining his hearing. He shares how he composed a soundtrack of silence as he was losing his hearing and the journey to getting an auditory brainstem implant. In episode 41, I interviewed Sarah Robinson, who is a speech language pathologist, and she opens up about growing stronger in her acceptance and advocacy as a deaf and hard of hearing individual. And Episode 42, Dr. Jessica LaFleur, my colleague and coworker, shares about her nonprofit Piper's Key and her mission to unlock representation for children who are deaf and hard of hearing. And Episode 43, Dr. Johnny Sexton discusses the Care Project and Educational Audiology Services with a threaded theme of changing the culture of communication.
Carrie: [00:09:06] Episode 44 Lin Wood, who was one of my childhood audiologist. We take a leap back down memory lane, and Lin also shares about her professional career working with children and starting her online resource store. Listen with LAMB. Episode 45 Dr. Yvette Stager is a licensed psychologist working at the University of Miami Institute. She shares about her research and experience working with families, navigating through parental stress and developing self efficacy. Dr. Uma Thurman is a teacher of the deaf and she shares about the opportunity she has had to pay it forward through her work as a professor and through her nonprofit listening. Together, we take a deeper look into the role of the teacher of the deaf in the field. Episode 47 Jody Cutler, mom, activist, entrepreneur, producer, shared the big news that Rally Caps movie was selected to be part of the 31st Heartland Film Festival. The message about accessibility and inclusion is important for the big screen. Episode 48, Rebecca Alexander, who is an author advocate, fitness instructor, psychotherapist, shares her own journey with Usher Syndrome Type three and set the example of choosing to be grateful. Be happy with what you have today and be optimistic about tomorrow. And Episode 49 Dr. Matthew Busch is an ecologist, neuropathologist and professor at the University of Kentucky. In this episode, we have a conversation about how social determinants of health are critical conversations and considerations for improving hearing health care for individuals and families.
Carrie: [00:11:06] I want to say that I don't have a favorite episode because I love them all. I am grateful for all of you, for your storytelling, whether it was personal or professional. I love learning from each of you and digging deeper into topics to empower your others, and I cannot wait to meet more. Guest as we kick off another 25 episodes in 2023 to. Thank. Thanks to all of you for tuning in twice a month to catch the latest episodes. I have heard from many of you over the year and continue to receive positive feedback. It brings me great joy to hear when a college professor shared this podcast with students to listen. It warms my heart to find out that a parent was inspired by another parent sharing their story. And I am encouraged when an adult who is deaf or hard of hearing realizes that there is others out there in those shoes. Listeners keep listening. Please share with others. Engage with me on the empowEAR Audiology Facebook page and please give a five star review. Consider writing a favorable comment. All of these actions help empower others to listen and so that others can also benefit. Listeners, if there is someone that you want to hear from, please reach out and let me know. Grateful. Grateful is the word of the year, and I am grateful to everyone for believing in me. Cheers to year three and 25 more. Thanks again for listening.
Announcer: [00:12:47] This has been a production of the 3C Digital Media Network.
Episode 49: empowEAR Audiology - Dr. Matt Bush
Announcer: [00:00:00] Welcome to episode 49 of Empower Ear Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Audiology podcast. I'm really excited to introduce our guest today. It is Dr. Matthew Bush and he received his medical degree by Marshall University and in West Virginia, and he completed an Otolaryngology research Fellowship and Neurotology and cranial based surgery fellowship at the Ohio State University Medical Center and Nationwide Children's Hospital Research Institute in Columbus. He is board certified by the American Board of Otolaryngology, both in otolaryngology and in neurotology and cranial based surgery. Dr. Bush is actively engaged in clinical research with a special focus on hearing health care disparities. He has published multiple peer reviewed papers on the topic and is supported by the National Institutes of Health. His research and clinical efforts are focused on providing timely access to care for children and adults. He has received multiple awards for his teaching and research and is involved in multiple national organizations as well. So, Dr. Bush, welcome to the EmpowEAR Audiology Podcast.
Matt: [00:01:28] Thanks, Carrie. It's a pleasure to be with you.
Carrie: [00:01:30] Well, I just wanted to say it was a pleasure to meet you last month when we had an incredible flight experience as we are trying to get to a common meeting in Oklahoma and we got to spend quite a bit of time delayed in the Atlanta airport.
Matt: [00:01:51] Yeah, you know, adversity tends to make lifelong friends. And when you're stranded somewhere or dealing with some of the the craziness that is life as we know it now, whether that's through travel or the pandemic, you know, impacts, we're just thankful to find, you know, birds of a common feather and friends in our in our field. And so, yeah, we by chance were able to huddle together and and sort of make a plan and and move on through the adversity.
Carrie: [00:02:22] Yes. Well, it definitely made our wait and delay a lot more enjoyable than in the airport but thanks for being a part of this today. And I always like to ask my guest to have ventured into our little niche of hearing health care. How did you decide to specialize in ENT and working with children and adults with cochlear implants.
Matt: [00:02:50] Well, I have been very, very fortunate to have just some really immense mentors and really incredible opportunities that led to where I am today and allowing me to be in employed and do my dream job. That's that's that's the thing I would I'm thankful that what I do is not I get paid to do it, but I would do it for free if I if I had to, because it's just that rewarding and honorable to be able to be involved in the life and the care of patients that are entrusting so much to us. But I grew up in West Virginia, the last of four children in a family of four with two parents who were high school sweethearts. They didn't go to college and raised in an environment where we really valued community and connection and family, but education, health care resources, those things weren't necessarily at the front or the foremost of our brains. And thankfully, we were blessed with health in our family. We didn't have any major health problems in our nuclear family, but certainly those influences of rural health and rural health care were a part of things that I saw early in life and was was witness to the influence, kind of the directions that I went in health care.
Matt: [00:04:10] My grandfather was a woodworker, really, a jack of so many trades, as many rural farmers and people who existed and survived through the depression tended to be. But he was a woodworker and would make all kinds of very interesting things. He would make kind of the casing for like grandfather clocks and then find the the components that you would purchase to sort of make people a sort of a makeshift grandfather clock, but just really was somebody that used his hands to do really cool things. So I knew I was headed down a path to use my hands or at least some kind of manual skills. And as health care became an opportunity, then the as I began to think about the different disciplines and had the different mentorship opportunities in health care, it was clear that otolaryngology was a field with so much diversity of the types of patients and the things that we would treat. But I really became fascinated in the in the anatomy, the physiology, the complexity of the auditory system and the ear the ear surgery where fractions of millimeters make a huge difference between hearing or not hearing or a smiling face or a drooping face. So that that type of the stakes and the complexity really very much appealed to me.
Matt: [00:05:35] I think one of the most influential things that sort of made head neck anatomy and the in the ear anatomy come to life was that while I was in medical school, I lived adjacent to the basic science campus portion of the medical school. And in Huntington, West Virginia, I went to Marshall University and the GROSS Anatomy Lab were hiring medical students to work with a head neck anatomy professor to work on dissections that would be used for testing purposes. So different structures would be pinned and used for testing the next class of medical students. So I was basically paid as a medical student to do head and neck dissections and explore head and neck anatomy. It's a bit morbid, I realize, and I don't know, probably some of those old scrubs still smell a little bit like formaldehyde, so it might bear some of the the memories of that that employment. But honestly, that was one of the most impactful things that just let me take a front row seat of all of the amazing anatomy and complexity of the ear, the skull base. And so these formative experiences just sort of really directed me down this very rewarding field.
Carrie: [00:06:53] And that's a great history. It sounds like you said you're growing up in the rural parts of West Virginia and then finding your niche in college really spearheaded you in some of the work that you do right now. And I know you have a heart for humanitarian work, which I want to talk about today, too, but you also have done a considerable amount of time studying health care disparities. And so I'd like to maybe spend a little bit of time talking about your research on health disparities and how that impacts access to health care. Can we start a little bit with? Well, first of all, before we go too much further, I also thought, do you want to share a little bit about what your role is right now at the University of Kentucky?
Matt Bush: [00:07:46] Yeah, sure. So at the University of Kentucky, I am a professor and vice chair for research in the Department of Otolaryngology. It's a program that I have a lot of connections and a history with in that I did my residency here, so I went to medical school at Marshall in Huntington, West Virginia, and then came here for my residency program. And the residency is very different, not larger than it was when I was a resident. Here we have a number of residents and faculty and researchers. So it's a it's a it's a busy growing place. It's been an exciting place to be a part of. I've also had an opportunity to be involved in health care disparity research and health care research related to policy. And so I have I hold an endowed chair that is supported by a foundation for Healthy Kentucky that supports research and scholarly activity to promote health care access, research and policy changes. And so that has been an a career expanding and also opportunity enriching situation to be able to work with colleagues that are in other disciplines, such as in public health or in behavioral science or in other fields to be able to kind of consider where does hearing fit in all of this? Often when we think of health care access or health disparities, we're thinking in terms of some of the the big diseases, the cancer, the diabetes, the obesity, the heart disease, some of those big, bigger items that are affecting millions and billions of people worldwide. But there are so many things that, as we know within the hearing world, that hearing such a such a precious, cherished sense that we all value until it's taken away. So that's the that's the what I do here at UK is involved in kind of not only the clinical side of things, but also in research and then education with residents and medical students.
Carrie Spangler: [00:10:03] Yeah. Wow. You have a lot of hats that you're wearing. And I.
Matt Bush: [00:10:10] Know in.
Carrie Spangler: [00:10:10] The day outside of the university as well, but which kind of leads me to some of your research and maybe taking a deeper dive into how the social determinants of health impact hearing loss. Is there anything that kind of like a story or a patient that was a driver to digging deeper into this?
Matt Bush: [00:10:35] Yeah, You know, any good researcher or any good research project is rooted in real life experiences that I'm a firm believer of that as I mentor medical students and residents, that unless it means something to you personally and professionally, then you might complete the task, but you won't necessarily enjoy it and it won't be really like a springboard to other work or, you know, you kind of creating your own path. So that's an issue that is definitely something that has influenced me, that my work in health care access and health care disparity as it relates to hearing loss is all rooted in experiences that I had not only as a kid growing up in a rural community, but then also attending a medical school that focuses more on rural medicine, and that's the primary recipients of the care. And a lot of the research activities are in rural communities within that portion of West Virginia, but also in my residency where I am now in Lexington, Kentucky, at the University of Kentucky is right at the at a county that is adjacent to a wide region known as Appalachia. And the Appalachian region stretches from Mississippi to New York. And 8% of the US population is in is in Appalachia. About 30, 25 to 30% of the population of Kentucky reside in Appalachia as well. And Appalachian is Appalachia is determined by your county that you're in, and that's determined by the Appalachian Regional Commission, which decides which county is Appalachian or not. And that's not really a voting process. It just is what it is. But this is a region that's had a historical challenges with socioeconomic depression. Access to quality education, health care and health disparities. And poorer overall health care outcomes. And the Kentucky contribution or portion of Appalachia has been one of the most socioeconomically depressed regions of all of Appalachia, but then also of the entire United States.
Matt Bush: [00:12:56] So practicing in this area, I'm privileged to care for patients that live in throughout the region, but also this population coming from Appalachia, where we're seeing these challenges on a real visceral level that are impacting their lives And caring for patients here has impacted me as a father, me as a human being, and me as a physician, but then of course, me as a researcher as well. So as a resident, I, I was really just struck with some of the challenges in some of our pediatric cases. I mean, we had not just once, but on multiple occasions we would have a child who was anywhere from 4 to 5 years of age who would present to our clinic and had basically fallen through the cracks, through so many different safety nets or potential opportunities or appointments, and a child that might have been labeled as autistic or a child who had had so much, so much time, but yet so many little resources, so little resources and so little opportunities to actually receive clarity and diagnostic care, to receive clarity and treatment options and direction of care. And when you see a five year old that doesn't hear and doesn't have any means for communication, that's really impactful. And that really influenced me. And and as I then went off and sowed my wild academic oats and finished fellowship and other training opportunities and came back and that was something I realized that I don't know how I'm going to do it, but I need to figure out some way to define and describe and address some of these children that have fallen through the cracks or some of these patients that have really just lacked resources and opportunities.
Carrie Spangler: [00:15:01] And statistically, I know you mentioned about the statistics for the Appalachia region region, but how how much does that impact those with hearing loss? Do you know?
Matt Bush: [00:15:17] Well, I think that one of the biggest challenges for the whole Appalachian region, as most as much of the region that's from Mississippi up through New York, are rural communities. And so Appalachian might be a certain flavor or flair or regional imprinting of rural communities. But some of the issues that face that that vulnerable populations might face in rural communities are ubiquitous. And that could be whether you're in sub-Saharan Africa, in South America, regardless of where you might be. There are concepts and there's principles that affect individuals where there are health care deserts and limitation in access to any kind of health care provider, let alone a specialist in health care. And I think that's one of the biggest things that I think of when I think of Appalachia is the overwhelming hearing health care provider shortage that is throughout that whole region. That creates a huge blockade for anyone that would try to access hearing health care, whether they had means or the health literacy or not. If there's no providers, it's just going to be more difficult. It's going to be more costly to seek that care out. So that's one of the biggest things is is the the lack of expertise that's within those regions geographically. Mm hmm.
Carrie Spangler: [00:16:49] Yeah. And I think if the World Health Organization, they have five different domains that they kind of look at as far as social determinants of health. And I thought we could take a deeper dive into how this can either positively or negatively impact access to hearing care. And I know you've done a recent study and published an article really kind of diving into this as we look at student or individuals with cochlear implants. But you kind of mentioned that health care access and quality. Does anything else stand out in that area besides the lack of qualified professionals?
Matt Bush: [00:17:32] Well, if you look at each of those domains, you know, it sort of gives you these concepts and these things, these these things outside of the genetics and the actual biologic mechanisms that can influence health, either, like you said, positively or negatively. And so within the domains you can find and could describe the the people, the populations that are either getting the really good health care, really getting the great health care outcomes, getting the great access or have great quality, or you can define those that do not. And that's certainly not something that's just, like I said, isolated to rural communities. There are plenty of populations throughout the entire world whether that would be an urban environment or rural that would face these challenges when it comes to health care, access and quality. We have, I think, begun to describe where there is not access or where there's limited access. I do think we we are challenged a little bit in defining and describing the quality and the quality of of health care, especially as I think about rural communities. There are there may be some hearing health care providers, but perhaps they only see adults. They don't see children. You know, they're not willing to take Medicaid insured patients. So there there can be issues of quality as it relates to certain components of the the population that you're dealing with. And I also think there's a lot of opportunities within that particular domain of interventional work, you know, of I mean, and this is where I'm involved in is interventional work in that area. But I still think that there is much work to be done to consider initiatives and programs, grant funded proposals that would work to address health disparities. And and I think the NIH is doing a lion's share of the work to try to really push and promote researchers to do this. But it's a there's got to be partnerships to be able to think along these lines to address health care, access and quality. It's a it's a multi level aspect to deal with.
Carrie Spangler: [00:20:01] Is there anything that you have found maybe in your area of Kentucky to help move that needle a little bit as far as health care access and quality? And you mentioned grants and programs that to be supported? Is there anything that. You know, I've.
Matt Bush: [00:20:20] Well, you know, I think some of the the basic things are making sure that within our own health care system that, you know, it starts with us. I mean, the solutions aren't isn't someone else's issue and someone else's job that if we're part of the problem, but we're also part of the solution, so we have to work together. So I think that's that to me has been the first start. It's like asking myself as a physician at a major teaching institution, state funded medical school and hospital system, you know, how do we work to improve the quality, the access for our patients that either do know us and have seen us or don't know about us and or has been have been unable to see us. And so thinking about what you do programmatically is, is first and foremost. And I think that that has influence then what we look at in research proposals. So, you know, when I first got started in health disparities, I think I was maybe thinking like a surgeon, like, let's just get get to this. Let's just fix this problem and maybe not like a public health researcher, but, you know, to take a step back and to think, okay, telemedicine could help. But what if there are there's no literally no bandwidth on the other end of the of the screen? And what if the individuals don't have any kind of other tools or means to be able to give us some objective information on auditory function, especially in pediatric diagnostics and pediatric care? It's that much more complicated. So what we've done is realize that if we're going to address this problem, then we've got to make partnerships, partnerships with the community, partnerships with state funded clinics and programs that provide broader public health services than even that we are able to provide to some remote regions.
Matt Bush: [00:22:21] And then through some of those partnerships, develop some research protocols and ideas of, for example, we have a NH funded patient navigator program where we use a parent who has been through the EDHI system and the early hearing detection intervention and uses that parent and embeds that within the EDHI system. And we're studying to see is that effective to take infants who fail a screen or referred on newborn hearing screen and help them achieve a completed diagnostic test in the audiology clinic. And that's not just our clinic that would be in state funded clinics throughout the state. But those things were born out of no shows that that we were seeing within our own practice. And so and then as we talk with with the state partners, how can we then study this to show is this effective? Is it saving financial resources and and work hours in less work or less opportunities lost? Those are things that research can help address and answer. But there's just a really a great need for clinical trials and pragmatic trials that address this. It's we can't just stay in the let's describe the woeful disparity that we have with this population or look at some of the causal factors of why those patients don't come to the audiology clinic or don't get their cochlear implant at 12 months of age and they get it at five years of age. Let's work to develop interventional clinical trials. And that's that's really what I think, that it's important to move forward.
Carrie Spangler: [00:24:06] Mm hmm. Yeah. I like what you said about, you know, it starts with us and asking those questions from our perspective and then being able to implement some different programs and interventions and research and programs to try to help navigate through that. I know there are some other domains that in your research that you've talked about to and how that impacts access to care. One of the things was education access and quality. So do you want to expand on that and that the any kind of correlation between educational level and the access to like let's say, cochlear implants?
Matt Bush: [00:24:49] Yeah, it's a it's a really another very deep swimming pool to to just begin to jump into and to think about and the complexities. It's easiest for us as health care providers to sort of do work in our own sphere. But the educational environment, the educational quality and access is a bit foreign to us in some situations, at least from some research and scholarly activity. So I do think that there is ample evidence in. A an array of literature, including our own, that demonstrate, at least in the pediatric population, that parental education, parental health literacy influences pediatric care in general, but certainly pediatric hearing health care. Parental educational level has been linked to the timing of diagnostic services for infants, but also is connected then therefore to treatment timing. There are differences even in some research. As we looked at participants who have received cochlear implants and looking at parental level of education and there is a correlation between the actual language outcomes from children after cochlear implantation and their parental education level as well. So yeah, that's a that's a big issue. But certainly adult literacy and adult health care literacy and adult educational levels also influence access to care and their willingness to pursue treatment. We know the abysmal numbers as it relates to the penetration and utilization in the market of evidence based treatments such as hearing aids or cochlear implants among adults, and those have just not budged much above 10%. So we're seeing likely in rural communities that the educational level, it's much likely to have a lower penetration or utilization of those treatments in that population. We've we're just in the process of submitting and publishing a paper now where we've evaluated cochlear implant information that's available on searchable websites. And if you do web searches and get cochlear implant information and we're looking for non industry sponsored sources of information initially just to describe the readability.
Matt Bush: [00:27:28] And in general, the AMA recommends that we would not put out health education or health in health education for information or materials that would be beyond a fifth or sixth grade reading level. It needs to be clear and simple. It needs to have a limited number of really long, multiple syllable words, which we're really good at throwing in all kinds of complex wording into our websites and our information because we want to be comprehensive. But the problem is, is that if you look at some of the top websites, again, this is in in under review now, not in press yet, but we'll see if it gets published. But the the evidence is overwhelming that every essentially every website that we've found has a reading level no less than 10th grade. I mean, it's just overwhelming how much that we have written, well beyond the knowledge, the understanding and even the educational level of what would be recommended for public health information. It doesn't mean that we can't describe complicated things. We just have to do a better job of it. And we might look in our academic centers or within our climate control, you know, cochlear implant centers and feel like the problem is that the patients are not getting the education starting in elementary school. They don't have any health literacy and other areas of their life. They're their primary care doctors aren't providing them the resources of educational materials. So we're kind of again, like looking at others is like the problem. And then this this evidence shows like we're not putting out educational materials that are really likely to be understandable by the the larger population.
Carrie Spangler: [00:29:28] Yeah. Which again, you know, we talk about having low numbers overall and then you think about these rural areas and hard to reach people and they're if they happen to look, it would be above a level that they would anybody, you know, a layperson would would comprehend to get the information right.
Matt Bush: [00:29:49] That's right.
Carrie Spangler: [00:29:50] How does the community I mean, how can we maybe look at the community and connectedness in order to get that information for cochlear implants or hearing health care into these areas that don't have a direct access?
Matt Bush: [00:30:10] Mm hmm. Well, communities do play a very key role when when resources are limited and when groups of people are geographically or somewhat socially isolated, they find ways and means to survive. And there's elements of community trust and community sort of a community conscience consciousness of sort of how am I perceived within my community. And that's not unique to rural areas either. But this is a whole another domain that I think we have done little to nothing in at least I'm not aware of, and nor have I personally yet contributed a great amount of effort or output on it. It needs to be done, but we need to really understand that domain, the social and community context of how do people perceive, how do they deal with stigma, how do they deal with helping each other, and how do we work communally and within groups of people to sort of bring the patients to the table and patients having a voice in their care and communities, having a voice in the quality of their care and the access. So that has been investigated in a wide range of of other anthropologic studies and fields, but not necessarily in hearing health care. So I think that's really critical. We're engaged in some research now where we're it's important to us to to study populations and study health systems, again, that are outside of our own. I think, again, like I mentioned, that some of the solutions and some of the ideas innovation will come. It starts internally of how can we help to address the problem or be involved in the solution. But we also know that we do not have the answers.
Matt Bush: [00:32:10] We do not walk in the shoes of those that are in certain communities. So to get into rural communities to as a self labeled rural health care researcher has been critical. So we currently have a funded study through the NIH, supported by the NICD that looks at rural health clinics. And rural health clinics are a unique health care system that has special resources and some opportunities. Some of their billing practices through Medicare and Medicaid have a different process than other private practice or other academic centers, and their charge is to provide care for rural communities. And there's an application process, and they could lose that rural health clinic status if they if their population changes or their practice changes. But that type of a clinic is important for us. It represents kind of an outpost, really a one stop shop for many rural communities and for us to go there and to learn from providers, to learn from patients of what does hearing loss look like in your practice, in your life? What does hearing health care look like? How can we use resources within the community to help address this? And similar to what we've done with the pediatric work, we're interested to see, could patient navigation sort of a leader within the community, a well respected person who could could provide some health literacy on a very layman's term, layman level, but also support self efficacy could could support logistics because they are a part of that community, not because they are they going to get paid for this or they're going to be a part of some long term employment for that practice.
Matt Bush: [00:34:11] But we're looking to see how navigation or how communities can be involved in helping their constituents and their residents get access to some specialty care when it's not necessarily available within that quote unquote comprehensive clinic of primary care clinic environment. So this is how we we're thinking about. We really value communities. We value their input. Another plug that I'll make here regarding communities is that I, I preach the good news that everybody that's doing anything related to hearing health care as a clinician or even as a researcher or both even should be engaged and involved and kind of developing a community advisory board, a community advisory board that's made up of stakeholders, of patients, made up of policymakers, perhaps educators, other members of the community, health care providers as people can come to the table. It gives an opportunity, a voice for those that may not have a voice otherwise. A community advisory board shouldn't be a group of cochlear implant surgeons and cochlear implant audiologists and cochlear implant speech language pathologists or educators. It should involve parents. And so that's the thing, is that we want to know, I mean, how can you use it for your health care is that you would hopefully learn about where we're missing the boat, where we're hitting the target, how we can improve things from just a practical logistics sense. But in research, you're learning about innovative ideas, better ways to recruit, better ways to design interventions that are culturally appropriate. And you can celebrate together that that shared work.
Carrie Spangler: [00:36:07] Yeah, that's a great idea to have lots of different voices at the table to really understand the community. But I love your the ideas that you guys have implemented about the patient navigator and having someone trustworthy within that rural community to be able to share information and hopefully get them, you know, whoever to that next step. Because if they don't have a particular provider or center right there in that rural community, if they can build that trust and maybe they would be more likely to go outside of their community to get the health and care that they need.
Matt Bush: [00:36:46] Yeah, we don't know if it works. And that's that's what we sort of maintain this equipoise, that if we knew that it works, then we'd be fools for doing research. But we should just sort of build it into policy. But we don't know if it works. We don't know if it's cost effective, we don't know if these things are sustainable. But that's the beauty of being involved as a pragmatic, community based researcher is that we get to study this in a formal sense and see does it make a difference? And it makes sense. It's not rocket science. I mean, it kind of we know there's value that is there. We don't just we just don't know exactly how that looks in the long run and how that may influence hearing health care moving forward.
Carrie Spangler: [00:37:32] And know you mentioned earlier that, you know, sometimes we need to look at outside of profession to see what's happening there, too. Do you know of any fields of study that have done a good job with like a patient navigation model?
Matt Bush: [00:37:49] We've totally plagiarized the oncology world for patient navigation. Honestly, that's the roots of patient navigation. And, you know, classically like the cancer survivor who completed their chemotherapy, they rang the bell. They're five years cancer free. Those are the folks that often will come back to oncologists and will say, hey, how can I be involved? And maybe in a philanthropic way when to support a cancer center. But some of them say, Hey, I really want to be in the trenches. I want to be with some of those folks in the same place where I was. And there's there's a whole body of research that has shown how in the oncology field that navigators improve the access to care, they improve the adherence to pursue diagnostic and therapeutic treatment and even outcomes in some disciplines and in some fields of of oncology care. They've shown improved outcomes because if you're completing the things that were prescribed, then it would make sense that they overall might have better outcomes. And and that's really important. We published a systematic review. I think it's. the editor will probably revoke my my article now slip in my brain. But it's, I think, oncology nursing. I've never published anything else, never submitted anything to oncology nursing.
Matt Bush: [00:39:19] But it was it was just an opportunity to submit a public or a systematic review related to an overview of what patient navigation has done for those that come from underserved communities and a demonstration that, you know, time and time again and looking at the literature, systematically shows that approval of access and approval of timing of care. And that's exactly why we did that, because we wanted to say, hey, has this worked in some other field? Could we adapt that for hearing health care? Certainly, hearing health care is very, very different than oncology care and the conversations and the population. But there is complexity that is built into what we do. There is complexity because it is not necessarily every single patient that's facing this. It's not as as perhaps known to some pediatricians of how to manage and navigate through profound congenital sensorineural hearing loss or nuances related to CMV related hearing loss. So those are some things that really can provide value not only to providers but to patients along the way. But we'll see. We'll see what the research shows. That's what we're all about.
Carrie Spangler: [00:40:48] Yeah. And then in your own practice right now, have you found anything that you guys have tried to help close that gap of the social disparities with adults and children who are thinking about cochlear implants or getting cochlear implants that might be useful for listeners.
Matt Bush: [00:41:14] Well, I to tie back in with what I said earlier about doing a little bit of introspective work, I think is is an important part of just human growth and development and just learning from our own mistakes. For me, I, I am like I said, I'm doing my dream job and I just am so thankful to care for a wonderful group of patients and a population that entrusts so much when they walk through our doors. And we need to very much value and demonstrate our trustworthiness. I really I really have valued whenever I have a patient from a county that we don't have any other patients in that county, perhaps that has a cochlear implant. I try to really have a conversation with them about. Not only how they're doing, but how. What was their journey like? I really just as a provider and I don't necessarily look to try to build an extra office time. I mean, sometimes we'll just reach out to them separately because I just want to know. Tell me again about your journey to get here, and then I want to learn and listen to them about how could I know there's got to be other people in your county and your community that are having some similar experiences. How could we help them? And through that there have been I mean, I've I've made visits to small little towns and met up at the library or met up at the local watering hole wherever the the older men are gathered around drinking their coffee on Saturday mornings.
Matt Bush: [00:42:57] But, but find a place in a situation where there can be a conversation. I don't know. Maybe in a sense it's just some kind of old fashioned whistle stop tour. And some people say that's not sustainable, That's doesn't fit into my my life and my world. But the whole concept is is listening to our patients and learning from them. And as a researcher who has spent a lot of time in my career of analyzing and trying to understand qualitative data and research I have, I'm in a phase of my career and in a field of my career where I really have to value the the qualitative information and work to obtain qualitative data that is rigorous, that is deep, that will inform the research questions. But again, qualitative qualitative data is what we do as clinicians all the time. So it's not that foreign from us, but I just work hard to try to create opportunities to to, to learn from and listen to the stories of patients and then physically try to visit those places and work with patients to think about, Hey, how could we help others in your community?
Carrie Spangler: [00:44:18] Those are all great ways to get connected in the community community. And when you think about all of the different factors that influence social determinants of health, there's a lot of moving parts in there that you can't really separate out. And like you said, every patient kind of has their own journey. But if you can get take the time to listen and learn from them, you probably will gain trust of that person. And that person creates a ripple effect to somebody else within the community when they share, you know, hey, this Dr. Bush came and had coffee with me in the local, you know, coffee shop and talk to all of us. And then they gain that trust to maybe go outside of their own community.
Matt Bush: [00:45:01] Yeah. I mean, it's it's amazing the impact that that one individual will have for so many patients. And it doesn't matter how how much I tweet or have Facebook posts or whatever, that population is not going to be influenced by social media. That patient that population is going to be influenced by that one individual who came back from Lexington and either loved or hated that that provider or that health care experience, that process they've gone through. And so that's really important for us to try to work with them. And I have learned lots of things about maybe where we dropped the ball or had not communicated, and we've changed practices in how that we will communicate with certain individuals or how we want to provide educational materials or even the order, the way in which we kind of organize clinic appointments. It's it's just amazing how much logistics of health care that we we might think about, just like whether it's widgets or Amazon prime boxes that might be load on a pallet. We think of health care often that sense. But the patients can really, really inform the logistics of what we do. And again, they're a wealth of information. It's just a matter if we have the time and the willingness to listen to them.
Carrie Spangler: [00:46:26] Mm hmm. Yeah, but obviously it makes a big impact for rural type areas. Is there anything I wanted to ask you about your volunteer work in Kenya as well, but is there anything before we kind of leave this topic of. I kind of rural America and health disparities. That may be practical advice if people want to get started. I think you've provided quite a bit of it, like basically going to the community and building trust and listening to others. And then you said you change some of your logistics and practice as well by listening to individuals, but is there anything that I missed?
Matt Bush: [00:47:12] Well, I think I would leave the topic by just saying that work in this field is not meant to be siloed or meant to be proprietary. And if you care about health equity and all populations getting exactly what they need, exactly when they need it, then you can't remain silent. You know, you can't just sit back and just let the status quo go on regardless if it's disparities or discrimination from race or ethnicity, if it's their geography, whatever that that variable might be that defines some difference in outcome. You need to speak up. You need to connect with others that want to talk about this and innovate and create. And I have been amazed by the number of individuals I've been able to meet and have conversations and learn from. And most often, at least at the onset, they weren't Otolaryngologist. I'm very thankful for a rising tide of really bright, public health savvy otolaryngologist that are asking some big questions and doing some great work to address it. But it's transdisciplinary and just speak up, get connected, reach out to me because I mean, I, I eat, sleep and breathe this stuff. So I, I care about it and I think I would I'd love to chat with anybody who wants to talk about it.
Carrie Spangler: [00:48:42] Now, I am glad you're so passionate about it, because we all know, at least in our in our field, that the the cochlear implant, surgery and technology itself is amazing, but it's only a small part of it. And all of the other factors that influence every human being is really what is going to be a positive or negative in their life.
Matt Bush: [00:49:10] Yeah, you're right. You're exactly right.
Carrie Spangler: [00:49:13] So I know when we met and our layover in Atlanta. You also told me that you have a heart for Kenya and you do quite a lot of volunteer and teaching over there. Can you share a little bit about your humanitarian work?
Matt Bush: [00:49:32] Absolutely. Well, I'm about 10% Kenyan, just culturally, not not ethnically or racially. But honestly, I have been amazingly privileged to have an opportunity to connect with some some friends and colleagues that I've been able to develop in Nairobi, Kenya. So I have I have some family friends who are from Nairobi, and I visited Nairobi when I was just as green as I could be, fresh out of fellowship in my first year in practice, I guess I guess was ten years ago now back in January of 2012. But I came to, through these connections, make a relationship with physicians at the University of Nairobi in Nairobi, Kenya, and they have one of the only ear, nose and throat training programs, one of the few audiology programs in all of East Africa. And so this really represents kind of a a only source of education and some even hearing health care resources and specialty care for a huge population. So there's a number of residents that come from other countries within the East African region to Nairobi to this institution to train. One of the challenges has been in hearing health care with surgeries, the the equipment, the microscopes, the drills where we've got tools to do this work. It's not just a knife and some suture. We need some complex tools to do some complex surgery. And that's been a challenge for a publicly funded health care system and medical schools.
Matt Bush: [00:51:30] So it has been a really exciting ten year journey of bidirectional education and teaching each other, listening to each other, laughing and learning. And our families of those that are the educators and our family, we've just we've just really connected in so many ways. And I usually make two trips a year to Nairobi, where often we're giving lectures, we're giving, we're involved in surgeries. Most of it's chronic ear surgery, but there are also tumors. There are cochlear implants that are done in the area as well. We're working to kind of build a cochlear implant program there in the teaching institution. And we also, you know, eat, you know, eat and drink together and just and just really become friends and colleagues. What we would do at our normal kind of national meetings. And over these ten years, we've had Kenyan residents, students come here to the US and spend time with us. They've stayed in our home. We've had a blast, or my kids know more Swahili than I do, so they learn a lot faster than than old folks like me. But and then actually, I just bought my ticket last week since the pandemic. I went right before the pandemic started. I went in January, in a January 1st of February 2020. But I just bought a ticket to Nairobi for the first week of October, and I'm going to take my 16 year old son.
Matt Bush: [00:53:00] So it's the first time that any of my immediate family has been able to go with me. And nine days is not enough. I'm like, I need to show him ten years worth of people and my family over there that I need to introduce him to. But it's it's just a part of who I am. And, you know, yeah, some of these social determinants of health, some of this health disparities, I mean, those are things that have been commonalities of things we've researched together and done work together. But I mean, I think it's sort of the the work defining me. I think my passions as a person as kind of lead me down a field like this to do work in rural Kentucky, but also in rural Kenya as well. So we have a nonprofit that we started during the pandemic because we had extra free time to sort of I had some colleagues that helped me create it. We don't have a website yet, so we'll get there eventually. But our nonprofit organization is called the Sikaza Society, and Sikaza is the Swahili word for listening. So the Listening Society is the name of our of our group, and it's all about bidirectional communication and learning. From each other and listening to one another.
Carrie Spangler: [00:54:15] Wow, that's great. You had started a whole nonprofit during the pandemic, and so is it based basically educational, kind of nonprofit, or are you doing actual humanitarian volunteer work with patients?
Matt Bush: [00:54:32] Yeah, it would be both. It's both. So it's a little complicated, but we would want to provide educational grants. It's kind of one of the initial motivations to develop the nonprofit is to support trainees here in the US that want to go there and provide care and do humanitarian work, but then also for their faculty, staff, students that would want to come to the US to provide some some travel scholarships. So that's one of our initial objectives and initiatives. Providing educational resources is also another focus and a goal that we'd like to have for a professional community, whether that would be textbooks or other types of resources that they might need, surgical loops, just purchasing things that our residents look for, that they need to be able to advance in their career, in their otolaryngology, but then also to be a source to vet equipment that might be donated. It's it's difficult. There's so much excess of medical equipment that's just sitting in warehouses throughout the the higher income countries that need to be mobilized into low to middle income countries. And that would be also an arm of this nonprofit. But we're we're pretty young, but we want to be intentional and want to be careful and very, very direct in what we do with the with the nonprofit moving forward.
Carrie Spangler: [00:55:59] Wow. Thank you for being an amazing servant leader in our hearing health care field, because without your passion and purpose, a lot of these ideas and initiatives would not be here.
Matt Bush: [00:56:16] Well, it's my it's my joy. That's that's that's really that encompasses it's all about true joy. And that's that's what I feel real true satisfaction to be able to do what I'm able to do.
Carrie Spangler: [00:56:27] Well, thank you for that. Is there anything that I didn't ask you that you want to share before we close up today?
Matt Bush: [00:56:37] I don't think so. I mean, you hit me with social determinants. I never would have thought ten years ago I'll be doing a podcast on social determinants of health. That's. That's not what surgeons do. So thanks for allowing me to be a bit of an imposter of a of a stunt double for a public health researcher. But now I might I might leave you with just saying if if success learns from from what you're doing. Maybe I'll start a podcast, too, and I'll. I might have to call on you to to give a talk to the Sikiza the listening society and let them listen to you.
Carrie Spangler: [00:57:11] Well, I would be honored to be a guest if that ever happens, but I just want to say thank you again, Dr. Bush, for being a part of the Impact Your Audiology podcast. I think everything that you're doing, we need to think outside of just that yourself. And what you do is definitely outside of that, looking at the whole person and thinking about all of those aspects of their lives that we need to think about and help support and move forward in order to close some of the gaps that we have with health disparities, especially in our hearing health care field. So thank you again for being a guest today.
Matt Bush: [00:57:53] Thank you. Well, you're you're part of the solution, too, because you're thinking outside the box with podcasts, with real stories. And so you're you're doing the good work, too. So we're we're thanks to Atlanta and travel delays where we're we're friends for life now We are.
Carrie Spangler: [00:58:10] So you never would have thought a travel delay would bring you to a podcast today. Right. And listeners, if you enjoy this podcast and the empowEAR audiology podcast, I encourage you to give some five stars and pass it along to anybody else that you think would enjoy listening to it. Thank you for listening.
Announcer: [00:58:34] This has been a production of the 3C Digital Media Network.
Episode 48: empowEAR Audiology - Rebecca Alexander
Announcer: [00:00:00] Welcome to episode 48 of empowEar Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3 the number three C Digital Media network dot com under the empowerEAR Podcast tab. Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a special guest with me and I'm going to read a little about my guest and then I will introduce her. So today I have with me Rebecca Alexander and she is a psychotherapist, an extreme athlete and an activist. She grew up in north Northern California, and she holds two master's degrees from Columbia University. She currently lives in New York City. She is the author of the book Not Fade Away. And she was born with Usher Syndrome Type three. In this book, she shares an incredible story and meditates on what she's lost from the sound of a whisper to seeing a sky full of stars and what she has found with others, a profound sense of gratitude for everything. She has a joy in the simple pleasures of life. So, Rebecca, thank you for being a part of the podcast today.
Rebecca: [00:02:24] Thank you for having me. I'm glad to be here.
Carrie: [00:02:27] Well, I just want to take this opportunity to share the first time I met you. And I don't know, I don't think you really met me, but I saw you at a conference in Massachusetts, and you were the keynote at the Clarke mainstream conference, and you just shared your story. You were so authentic and real, and I was just so grateful to have heard you at that point in time. And I don't know if you remember, but at that conference, there was probably several hundred attendees there, and there was one girl who and her mom, and she raised her hand and she shared with the entire conference that she had recently been diagnosed with Ushers. And I remember you graciously going over to her and you just stood face to face with her and you had this conversation of support and empathy and gave her this big hug. And I thought, wow, I don't think there was a dry eye in the whole audience that day. But at that point I thought, you are truly a person that listens and you make that person, whoever you're with, make them feel like the most important person in the world at the moment. So thank you for who you are, and I'm so excited to have a conversation with you.
Rebecca: [00:03:54] Thank you. Yeah. I mean, that was a really mean. Of course I remember it. I don't think it's something you could forget, but I think sometimes when we're out here and these days with social media and all these different outlets, people lose sight of the fact that we're all human beings, that we have real lives and real stories and real emotions. And so being at that conference, this was before COVID, I believe. So even just being able to be there with someone with a girl and her mom not that long after her diagnosis, I think the emotions were still very raw. And so I really appreciated their standing up and even being willing to share with with me and also the group.
Carrie: [00:04:37] Right. And then I got to reconnect with you just a couple of months ago, and then I officially got to introduce myself to you. And you were a panelist for the American Cochlear Implant Alliance. And that's when I thought, Hey, I'm going to see if she would be willing to be on the podcast today. So thank you for joining.
Rebecca: [00:05:00] Absolutely. I think it was all kind of came in full circle.
Carrie: [00:05:04] It did. It did before COVID and right after COVID, right when we could get back together again.
Rebecca: [00:05:11] Yeah, Yeah.
Carrie: [00:05:13] So I know you have I read your book and I think I laughed, I cried. I could empathize. I had some empathy for parts of the book because I share some of the similar journey as you did. But I thought I would ask you what just prompted you to write this amazing book?
Rebecca: [00:05:35] Yeah. So, you know, it's interesting. There is a definitely a process to it. I mean, some years before I actually wrote it, I was approached by an agent, a literary agent who had seen an article that was written about me for New York magazine, and it was called Going Deaf and Blind in a City of Noise and Lights. And so I think it was a sort of a provocative story about living with the condition that causes progressive deaf blindness and being in a very chaotic, noisy city because I'm in New York City. And so when he first approached me, I thought, what possibly do I have to say that anybody cares to listen to or read about? And what I realized over some time. So I said, I don't really know that that's such a good idea. I think I was 28 when he addressed me and it was about writing a memoir, and I felt I felt like people would think, Really, you're 28 and you think you can write a memoir. But some years later, we there was a story about a spin a thon that we did to raise money for Usher Syndrome research because I was a fitness instructor for many years and he saw the article about me in the New York Times, I think the Style section, and approached me again and said, Now, would you be willing? So I think what was most important about writing this book for me is that in my own process of coming to terms with a condition that causes progressive deaf blindness, I read so many other people's memoirs and people who had very different life experiences than I did, but I always found that there was something in their writing or their experience that resonated with me.
Rebecca: [00:07:19] And to my knowledge, there was nobody that had written a book about living with Usher syndrome in a personal way that wasn't a clinical book. And so it was very cathartic to be able to write this and to sort of speak my truth and to sit down and really put everything into one place. It was definitely a very therapeutic experience, so I am glad that I did it.
Carrie: [00:07:45] Well, I am glad to. And I just wanted to share. When I was reading your book, I made me think of a quote that Brene’ Brown has, and she said, One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide. So when I think when I read your book, I'm like someone else, you know, is going to read that and be able to have that as a survival guide. So all of your courageous remarks and being able to share personally, I think will help others along the way with that. Would you mind sharing a little bit about your childhood events that led up to the diagnosis?
Rebecca: [00:08:27] Yeah. So, you know, everybody has somewhat of a different process of being diagnosed with Usher syndrome. Now, these days, genetic testing can really detect Usher syndrome before there's any physical presentation. But when I was growing up, they didn't yet genetically test for it. And not only that, it was something that for us, we thought that I had some cookie bite of hearing loss because of frequent ear infections. There was just a lot of information and things that were happening that we didn't pick up on. And so it was really kind of like an experiential thing. And by the time I got to the sixth grade, I was having difficulty seeing the blackboard at school and I thought I needed glasses. And my dad took me to the doctor, to an optometrist. His equipment wasn't sophisticated enough to identify what he saw in the back of my eye. So he sent us to an ophthalmologist and we went to several in the Bay Area in California, and they all confirmed that I had retinitis pigmentosa or RP, which is what causes tunnel vision and blindness. And so initially for people who are early in the onset of RP, they experience night blindness and difficulty in certain parts of their vision, whether it's directly below them or in their periphery. And so as a 12 year old, when I was diagnosed with RP, what we thought was just RP at the time, basically I knew that if I went into a movie theater, I had to grab someone's arm.
Rebecca: [00:10:09] I knew that if the dogs were below me that I might trip over them or the dishwasher was open. But at that time I think I heard the word blindness. But for a 12 year old, it's really difficult for you to wrap your head around what that even means. So it wasn't until I was at the University of Michigan, I was a sophomore, and I woke up one morning with really loud ringing tinnitus in my ears and it didn't go away. After a couple of weeks. So I went and was evaluated by an Otolaryngologist and they said, Rebecca, you don't just have RP You have something called Usher syndrome. We've never seen it as it presents itself in you. But because you have both progressive vision and hearing loss, it can't be anything else. So when I was first diagnosed. Usher syndrome. Type three didn't even exist. It hadn't yet even been identified. And it was my own family's bloodwork that we sent to these researchers in Helsinki, Finland. We were the missing link to being able to identify this third type of Usher syndrome. So yeah, I think that a lot of the work and the experiences I had are what have led to a lot more information for families who have been diagnosed with Usher Syndrome Type III. Because when I was growing up, I'm 43 years old, it wasn't that long ago we didn't have any of the information that we do now.
Carrie: [00:11:40] Right. Wow. And then I know you mentioned that you have the hearing loss as well. When did you first notice that you noticed the vision around 12 and then the hearing loss when.
Rebecca: [00:11:55] So, you know, the the the the actual timeline and my memory are a little off. So I'll do my best to try to remember. But my mom is probably still the best one to account for this. But when I was younger, we would watch television and I would always watch out of the side of my left eye. And so we thought it was just kind of a quirk that I would watch TV with my head cocked sideways and nobody really understood why. We just thought it was a funny tic that I had. And what we came to find out over the years is that my left ear was always my stronger ear. And so I created this coping strategy, this compensation, by caulking my left ear forward so that I would be able to hear the TV better. And it took us some time to figure that out. Again, I had some hearing loss with what an audiologist called a cookie bite of hearing loss when I was younger. And so we didn't know that there was any connection between the two. We thought that that was likely why? So I was given hearing aids. Even when I think I was in middle school or high school, I definitely had a hearing aid that I wore in high school in one ear for my AP history class because my teacher mumbled. But I remember the first time I was given hearing aids, which I never wore. I remember putting them in and hearing the fibers of the rug below me and feeling like I was hearing way too much. Like there are things that I didn't want to hear. And I think that there was also this aspect of feeling very self conscious of not wanting to have to wear hearing aids or to have a hearing loss. So it was this gradual period of time where I think Usher syndrome may be between my parents or something had been maybe mentioned, but never really discussed in full until I went to the otolaryngologist at the University of Michigan and I got that official diagnosis.
Carrie: [00:14:02] And after you got that official diagnosis, when did you feel like you recognized the gravity of what they said to you?
Rebecca: [00:14:15] You know, it's interesting because for so many of us, when you get really what is and remember, I'm a psychotherapist, it is a traumatic diagnosis. And it's not something even at 19 that I could really wrap my head around. So I was told that I was going deaf and blind. What does that even look like? I mean, the only person that I knew who was deaf blind was Helen Keller. And that wasn't my life. That wasn't how I was raised. I was raised in a hearing sighted family. And so it happened to be close to it must have been about 20 maybe, but it happened to be around the time that like the year before I before I turned 21. And so in my mind, I thought after I got this diagnosis, if I could make myself as physically perfect and academically perfect as possible, nobody would know that there was anything wrong with me. So I developed somewhat of a maladaptive coping strategy or developed an eating disorder because here I was given this megabyte of information that I couldn't wrap my head around. It was something that was completely out of my control. Not only do I have this, but we've never seen it as it presents itself in you. So we can't tell you what your progression is going to be like. We can't tell you how this is going to play out. But all I know is that I felt very out of control, whether I was able to recognize it or not. And so I created or came up with some superficial way of feeling like I had some sense of control in my life. And that was by being hyper focused on how much I exercised and how much I ate and how much I studied, the things that I felt were really tangible that I could somehow count or measure in some way.
Carrie: [00:16:02] Wow. And did that have a, I don't know, help you decide what you were going to go into at that point in time? Did you know you wanted to be a psychotherapist or did that evolve?
Rebecca: [00:16:19] Yeah, it definitely evolved when when I was diagnosed with RP. at 12, it was around the same time that my parents had recently separated, separated and divorced, and they sent me to see a therapist. Now I saw the therapist. My brothers didn't and I don't. I think I knew that it was I didn't really know why I was going. I certainly didn't want to talk about anything. And so but I think that that exposure likely was good for me. And so I think there have been all of these this confluence of different experiences that I've had over my life that have really kind of led me in the direction of being a psychotherapist. When you have a condition like this, it requires you to do a lot of self reflection. It requires you to go inward in a lot of ways that you might otherwise not have to, and to try to figure out what your identity is and who you are. So, yeah, there's a lot of different reasons why I became a psychotherapist, but also with a condition like this, it's important for me to be in a quiet room with one or two or just a small group of people to be able to focus and hear and follow the conversation so well. So it seemed like a good decision for me also in terms of my long term career goals.
Carrie: [00:17:42] Yeah. And in your book, you. Talked about there was I want to read directly what you said in the book because it was about kind of your emotions and challenges. And you talk about how I don't feel like the cards I've been dealt are unfair. I don't think life is that complicated. And I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful, to be happy with what I have today and to be optimistic about tomorrow. It's a conscious choice that one has to take effort to do. I feel like this can be really hard to do just day to day to have a conscious choice to to make the most of what you have. What do you do to help with that choice every day?
Rebecca: [00:18:38] So I think that what happens is that we feel like we've learned that we're supposed to be pursuing happiness and success and fulfillment and we don't make room or allow for ourselves to feel the emotions that come with being human, whatever it is that we're dealing with. When people say things like, I don't know why God did this to me, or they have all these different feelings around, or trying to wrap their head around how they ended up with the diagnosis, whatever, whatever it may be. In my case, it's Usher syndrome. And I just don't think at that complicated. It's a genetic disorder that I have. I think that people have a very unrealistic view on what life is supposed to look like. And it's not their fault. It's what we've learned through our society and culture and maybe our parents. But I think that the way that I'm able to be as optimistic or present as I am is that I allow myself to feel my emotions. I allow myself to cry. I have days where I don't feel that great, where I feel sort of down, where I feel less hopeful. But it's not because something has totally gone wrong and all of a sudden I've lost my way. It's that that's a part of being human. And I think that we have a lot of intolerance for being uncomfortable or feeling sad or even feeling some feel some depression. And we actually have to allow ourselves to sit with it, to develop tolerance for it, and to try to understand why we may be feeling the way that we're feeling instead of trying to figure out how to get ourselves out of it, because it's only in trying to get yourself out of it that you perpetuate that cycle of feeling unfulfilled and unhappy.
Carrie: [00:20:25] Yeah, I think you're right. A lot of times people get uncomfortable and then as humans, we just want we don't want to bother someone else with how we feel. And like you said, it probably stops you from accepting some of the things about yourself too, if you don't feel them.
Rebecca: [00:20:43] Yeah. Yeah.
Carrie: [00:20:46] Well, actually. Oh, go ahead.
Rebecca: [00:20:49] Well, I also think that sometimes when we feel uncomfortable because we live in this time and place now where we have so many outlets to not have to be present, you can go on any number of different platforms of social media and distract yourself. And what we have a tendency to do when we feel uncomfortable is maybe we shop or we look at what everybody else is doing that we're not, or maybe we drink or we use substances or we binge on activity. We do anything we can do not have to sit with ourselves and feel. And that, I think, is something that's difficult to develop when you have all of these very easy distractions. So yeah, that's a little bit more of my 2 cents on that issue.
Carrie: [00:21:34] Yeah, that's a good viewpoint though, and I like what you said about making that conscious choice and it does take a lot of effort every single day to make that choice to. Another thing that you said, and it was about you coming home from cane training and you sat in your book, you put fact disabilities require help fact I hate help and that the disabilities weren't going to change so I was going to have to. What does that mean to you?
Rebecca: [00:22:09] Yeah. So, you know, I think one of the hardest things for anybody, whether you have a disability or not, is asking for help. And it's not just asking for help. It's recognizing that you need help. And I think that we are raised to develop a sense of independence, to feel like we can do it on our own. We don't need anybody that we raise our children to become as independent as possible. And yet the most productive and successful communities are communities that rely on interdependence, meaning that we rely on each other to make sure that people are able to get from one place to the next. So we're able to be aware of the things that are going on in our community, that we help each other to be able to live productive lives. And so I think when you have a disability, you feel like a burden. Oftentimes, many people with disabilities, I think this feeling of not wanting to be a burden is pervasive in their lives, and it's important for people with disabilities to also understand that you have a very active and meaningful role in your family and friends lives too, and you need to recognize that. And the other thing is, is that developing the comfort and ability to ask for help is not a way of saying, I can't do it. It's a way of saying, I want to do this, but I need help in achieving this goal. And I think that what we forget is that when you ask someone for help, you're not saying, Will you do this for me? You're engendering in them this feeling for them that they matter and that they're needed. And as humans, I think there is nothing. We want to know more in this life than that we matter and that we're needed. And it's important to think about what you elicit in someone else when you do ask them to help you.
Carrie: [00:24:12] That's great and I do agree. I think people they want to help others. So if you can get past and this is just my perception, too, sometimes it's hard for me to just say, hey, you know, I have I have a hearing loss. So you kind of have that part that you have to get over on your own end of just even sharing and disclosing that information in order to get the help that you need.
Rebecca: [00:24:40] Well, and the interesting thing is, as a psychotherapist, and I think you can appreciate this, is that I sometimes have people come into my office. We're talking about things that they have a lot of shame around or a lot of really deep seated feelings about. And so they speak more softly or they may mumble. They don't want to hear themselves even say these things out loud. And now during the summer, when the air conditioning is on, it's a whole other ballgame of like, you know, I need you not only to speak up, but. So this is it's hard when someone is in this very vulnerable position as someone with a hearing loss, having to say, I know how difficult this is for you to share and I really appreciate your vulnerability. But in order for me to be able to help you, I also need you to speak up. And and so I often will have to say that to people. And more than anything, I don't want them to have to change their tone because I understand how vulnerable they are being in that moment. But if I'm going to be able to help them and really hear them and support them, I can't do that if I didn't hear what they just said.
Carrie: [00:25:51] Which is a great segway into my next question I wanted to ask was in 2013, you got a message that you might qualify for a cochlear implant. What can you share a little bit about that cochlear implant journey?
Rebecca: [00:26:09] Yeah, so I didn't get a message that I might qualify. I got a message that I did qualify. And the reason why I make that distinction is because, again, there was no real trajectory for me of knowing what my hearing loss would be like. And I was very fortunate to be raised with relatively normal hearing so that I could develop speech. But we didn't know. I never thought that I would ever get to a point where my hearing loss would be significant enough that I would need to get a cochlear implant. I went through so many hearing aids, I can't even begin to remember all the different ones that I had. And I got to a point where I had different hearing aids for different environments. And so I think you know very well what that experience is like. But so when I found out that I was a candidate, I'd been tested before, and a lot of my decision to get tested was mostly to have my friends get off my back of like, see, I'm not a candidate. And when I found out I was it turns out that the threshold had been lowered in terms of what insurance would cover. But my right ear, which was always my non-dominant ear, it could pick up environmental sounds, but it could never really discriminate. It was more decorative. I could wear earrings on my right ear, but I never really used it. I never used it for the phone. Nobody ever sat or walked on my right side. So that ear became a candidate. I think I had, let's say, with a hearing aid. I think I had 28% discrimination.
Rebecca: [00:27:45] And without a hearing aid in the sound booth, I had 26% discrimination. So the hearing aid was doing very little to help me. And so a lot of people find out they're a candidate and they mull over it and they think about it and they worry about it. And I wanted to be proactive. I really was able to recognize that my hearing loss and having a microphone that I would use at times in noisy environments was exhausting. And I don't think that we realize how exhausting it is. Sometimes when you live with a hearing loss and you don't do the things that are necessary to help improve the quality of your life. And so it was a huge fear of mine, and I allowed myself to mourn and cry before I had that surgery because it was never a place I ever imagined I would be. But I will tell you that after having the surgery and a lot of listening therapy later, my my life improved dramatically. And it was the best decision I could have made. And so many people wait, I think because they're waiting for stem cell research to happen, for your hair growth, to be able to regenerate hearing. And that's a long ways away. I'm encouraged by all of the research that's out there. But in the meantime, your life is really being affected by not being able to hear. So for me, it was the best decision I could have made. I think about a year later in a sound booth, I was testing between sentences and quiet or noise and words somewhere between like 92 and 98%.
Carrie: [00:29:26] Right?
Rebecca: [00:29:26] And it was dramatic. It was life changing.
Carrie: [00:29:29] I had to go from 28% to 90% in sentences is a big jump. Yeah. Do you remember what it was like when you first got activated?
Rebecca: [00:29:44] Yeah, I have the videos too, but I do. I mean, I knew that it was going to be weird. I'd been prepared. People had told me that it's a process, a journey, and all the things that people tell you, but until you actually experience it firsthand, you can't possibly imagine what it's going to sound like. And I just remember being turned on and I thought that like the tinnitus in my head was like speaking. When someone was speaking, it sounded like this very high pitch. It was confusing. And so but it did it took time. I had 16 electrodes, you know, I got Advanced Bionics and going through each of those electrodes, at first you get turned on slowly but surely. But it was a very bizarre experience. And my first instinct was like, Oh my God, what the heck have I done? And I think someone told me that maybe I would feel that way. But again, until you actually experience it. But from the day that I was activated to the next day, even when I went for my second mapping, I noticed that there was a shift and even improvement how quickly my brain was adapting to this new way of hearing.
Carrie: [00:31:02] I would say the same thing. Right. When I got activated, I was like, What the heck did I just do? I felt like I was hearing beeps and chirps and whistles, and that was about it. And I thought my my hearing aid was like squealing or something, But it was actually the beeps that were I was hearing with the cochlear implant.
Rebecca: [00:31:23] Right. And that was my experience too, because, you know, we hear all the higher frequencies first. And I remember my best friend was there in the room and the audiologist and their voices sounded exactly the same, like there was no difference between her voice and his voice. And the only way I can describe it and it still doesn't do it justice, is I remember it sounded like this.
Rebecca: [00:31:46] Hi, how are you? What are you going to do today?
Rebecca: [00:31:50] It sounded like a word processor. It sounded very high pitched. It was just it was very overwhelming.
Carrie: [00:31:57] And so then you wore both for a while, your hearing aid and a cochlear implant. And how did you feel? Were you able to integrate both the signals together?
Rebecca: [00:32:09] Yeah, I mean, the hearing aid I wore was a different company then, so Advanced Bionics know they're under Sunnova, which is the same umbrella as Phonak. And I had a Phonak hearing aid, but I'd become so accustomed to using this other hearing aid that I think I was able as much as I possibly could, able to integrate the two. But all of the sudden I started relying on my right ear that I'd never done. I think I was 33 or 34 when I'd been implanted in my first ear on my right side, and everyone had always walked on my left side, sat on my left side. They were used to having to be on my left. And so there was this whole, like migration of everyone having to move to my right side and having to switch that up. And so now it's amazing that I ever even forget or lose sight of the fact that this has not always been the case, that my right ear really was not very usable until I was well into my thirties. And so it's pretty remarkable. Yeah.
Carrie: [00:33:18] That your brain can take that information that hasn't really had much benefit and make sense of it. Yeah. And then you ended up getting a second implant too. How did that happen?
Rebecca: [00:33:30] So my left ear was not a candidate and I tested it every year when I went back for my mapping and my annual mapping and testing, and by 2017, my left ear had become a candidate. And it was something that I knew was going to happen at some point. I tried using my left ear with just a hearing aid and not my cochlear implant. I had friends speak to me and with me reading their lips and also covering their mouths. I really wanted to get a sense of where I thought my hearing was, and it was something I think that there was something that felt more final about getting my second cochlear implant because it was like that last bit of hearing, natural hearing that I had. But again, once I got my second cochlear implant, after three months sentences and quiet, I was at 100%. I mean, I didn't wait to get my ear implanted. I know that now the implants or MRI compatible, my implants are not. But if I'd waited for an MRI compatible cochlear implant, I would have not missed out on some very crucial years of my life, both personally and professionally. So I think that it was the best decision I could have made and to have more of that stereo surround sound. And remember, when you're losing your vision, you do need everything else you can have to help you gather information from your environment. So I didn't write.
Carrie: [00:34:59] Well, I guess it's a blessing. And the fact that there's so much research and advancements in hearing technology in order to give more hearing that for individuals that need it. So and then assistive technology and everything else to.
Rebecca: [00:35:19] Yep. Yeah.
Carrie: [00:35:21] And you also mentioned in your book, too, that as a psychotherapist, you have seen some individuals who are deaf and hard of hearing. Do you think those individuals seek you out because of your own personal journey too or how how did they find you?
Rebecca: [00:35:40] Yes, I do think that for any of us, one of the things that's most difficult for people living with Usher syndrome or living with a hearing loss or whatever it is that we face, it's the wanting to go and see a therapist where you don't have to explain all of the nuances of living with hearing loss or vision loss or cancer, whatever your circumstances might be, to be able to have a therapist who either specializes in whatever it is that you're dealing with or who has firsthand personal experience, can be relieving. It can be very meaningful because there are so many things that you don't have to explain. They get it in a way that somebody else wouldn't. And I think that my own frustration when you're a therapist, it means that you yourself ethically have to be in therapy. I've been in therapy for a gazillion years. It's been one of the best things I could have done and have done for myself because it allows me to practice self care and be self reflective and hold myself accountable instead of projecting my feelings onto everybody else. But it's also been frustrating because there have been many times where I feel like I'm paying someone to listen to me, educate them about living with hearing loss or living with vision loss. And so when you can bypass that step by seeing someone who has that specialty, that expertise or the personal experience, there's nothing like it. It almost feels like a sigh of relief because you can get to the real heart of the issues that you're dealing with and not have to deal with all of the psychoeducation around living with a hearing loss or vision loss.
Carrie: [00:37:28] Yeah. And for individuals who don't have hearing or vision loss, it's really hard to put yourself in those shoes.
Rebecca: [00:37:36] Yeah, Yeah. But there are also people who are fully sighted and fully hearing who seek me out because they see that I'm contending with something or living with something that they feel is something they couldn't ever imagine living with, and that maybe there's more information or insight or self awareness that I have just from dealing with something like this that they could learn from. So it's interesting.
Carrie: [00:38:04] That it is. And they're like a story about a significant challenge that you've had. And how did you overcome that? You have so much grit and determination and your book and what you share, but there's something that really sticks out in your mind.
Rebecca: [00:38:23] So it's interesting because we talk so much about overcoming our fears or overcoming certain obstacles. And I really try to bring it back to encouraging people to live with obstacles, to live with adversity instead of always trying to overcome it. There are definitely goals we need to set to overcome our fears, but the fears may never go away. It may the first six or seven, eight times I use my cane, I cried. And again, as I've said, living in New York City, using a blind person's cane and walking down the street doesn't draw that much attention. It doesn't look that unusual, which is fortunate. But there's the practice of needing to be uncomfortable, of needing to be afraid and still do whatever it is that you feel afraid of on even a daily basis or consistently so that it's not just that you're overcoming that fear, you're able to live with it. Because I think that we all feel like we have to set these goals to overcome our challenges and be able to move on to the next, bigger and better thing. And yet there are a lot of things that we may not be able to overcome that we may have to simply live with. So I think for me, the biggest obstacle that I still face is dealing with the inaccessibility of so many different types of technology and programs of having to constantly educate people about the importance of making information accessible and that it's not a privilege. It's a right for people who have hearing loss or vision loss to be able to have access to the same information that other people who are not hearing impaired or hard of hearing or low vision or blind that they don't even have to think about. So I'd say that that is something stands out to me. Climbing a mountain, swimming from Alcatraz to shore. Those are things that I can totally do, and I have the spirit to really challenge myself. But dealing with these things on a day to day basis is the most exhausting. That's what I think is my biggest obstacle that I challenge myself with every day.
Carrie: [00:40:46] Yeah, I love your comment about living with the adversity and instead of overcoming that and yeah, you also have some very humorous stories too. Do you feel like humor plays a positive role in living with adversity?
Rebecca: [00:41:05] So humor, I think, is at the core of our existence. When you live through so many different either traumatic events or heavy circumstances, it is so important for us to have humility and also to have humor because so many of the things that we face in our lives we don't have control over, and we try so hard to have some semblance of control of certainty. And yet life is very unpredictable and very uncertain no matter how hard we try. And if I were to just allow myself to fall into this hole of going going deaf and blind and how heavy this is, there's tremendous humor that comes with it. There's tremendous humor that comes with dealing with a condition that is so uncomfortable and and yet it's also hysterical. And I've shared many stories, but one of which that I can think of off the top of my head is when I was presenting for the Alexander Graham Bell Foundation, they were giving an award to someone and I was presenting the award when they brought me backstage and it was really loud and really dark and they said, You hold here, we'll come get you when it's your time to come out and we'll we'll guide you onto the stage.
Rebecca: [00:42:31] So it's completely dark and I feel that there's someone next to me. And so I didn't want to be rude. I wanted to engage in conversation I couldn't really hear because of how noisy it was. But I think I was just making small talk. Someone came to pick me up and said, okay, it's time to go on stage. And I put my hand on that person's arm and said, It was nice chatting with you. But when I put my hand on that person's arm, I realized that I had been speaking to a statue the entire time. And, you know, if I were to allow that to really bring me down, I can't believe I was talking to the statue like, it's hilarious, right? I was so caught up in the fact that I didn't want to be rude or offensive to someone that I just started talking to who I what I thought was a person. But it was nobody. It was just a statue. And so there's so many things that happen that are. Or humorous and you have to really allow yourself to laugh.
Carrie: [00:43:27] That is a good one. Talking to the statue, they probably said all nice things back to you.
Rebecca: [00:43:32] Right. It was a riveting conversation.
Carrie: [00:43:36] I love it. Yes. I find humor to be something that's important for me, too, because I do a lot of things very similar to that, where I mishear things or, you know, the things and I say something and I and I'm like, I don't think that was the right thing to say back.
Rebecca: [00:43:56] Right, Right.
Carrie: [00:43:58] But you have to laugh or it will eat you up, right?
Rebecca: [00:44:03] Yeah, definitely.
Carrie: [00:44:06] And the other there's one other kind of question that I thought I would ask would be. I think as humans, we naturally want to be in community with other people and it's just kind of part of who we are. And in your book, you share a lot about different significant people in your life, your family, your friends, coworkers. Have you. How has that been with you? How have people been able to influence and support you?
Rebecca: [00:44:38] It's so important for us to have a community, even if it's a small group of people that you rely on to just laugh with or to cry with or to feel like you can really speak openly with. And so for me, I really, really treasure my friendships, my relationships, because these are the people who know me better than anyone. I have people in my life who have known me way before my diagnosis, and I have people who I've only more recently met who have only known me with my disability. And so it runs the gamut in terms of the types of relationships that I've curated. But I think part of what's so important about us having community and having people in our lives is that it helps us maintain perspective. And it's also important for us to remember that what we go through may be very acute and specific to our lives, but everybody has something. And there are plenty of fully able bodied, fully sighted, fully hearing people that I work with in my practice. And you could not pay me $1,000,000 to trade places with them for various reasons. Maybe it's because they don't have a strong support system. But you need to be able to foster that yourself, to develop a support system for yourself and to support other people as well. The people who are in your support system that again, that interdependence is so, so crucial to our existence because. We all want to know that we're not alone. And even if somebody can't relate to what you're going through, they can be there with you. And that, I think, is far more important and it makes it more enjoyable and more interesting to have people to be there along the way with you.
Carrie: [00:46:29] Yeah, definitely. Having that village around you is important.
Rebecca: [00:46:34] Huge. Yeah.
Carrie: [00:46:36] Many of the listeners for this podcast are hearing care professionals, their parents who have children, who may be deaf or hard of hearing, or they're adults who are deaf and hard of hearing, and many may be dealing with a new diagnosis or might not have come to acceptance or I don't want to say acceptance, but you know what I mean. Of their hearing challenges. Do you have any takeaways that you can share with the audience about that kind of coming to acceptance or dealing with whatever adversity you have?
Rebecca: [00:47:14] Yeah. you Know, I think that particularly for parents and caregivers of kids or loved ones who have a hearing loss. Oftentimes we do take on this caregiver role, and it's so important for caregivers to recognize that they have needs, too, and that they need to take care of themselves. People who are caregivers by nature feel a sense of fulfillment by helping other people. But when you do that and you don't take time for yourself or recognize your own needs, we have a tendency to develop resentment towards the people we help, and the resentment that we feel is actually not towards the people we are helping or loved ones is actually towards ourselves for not being able to have either the strength or the wherewithal to say, I need to do something for myself or I need to take care of myself. It sort of becomes self-fulfilling. So I think that for parents and caregivers or loved ones, you need to make sure that you're really addressing your needs to that someone, the person with the hearing loss or whatever the situation is, becomes the identified patient. And that is where codependency lies. And so you really need to take care of yourself.
Rebecca: [00:48:28] For clinicians, I think sometimes you work day in and day out on the same issues of dealing with hearing loss, of doing the hearing tests, of fitting people with hearing aids, and having to deal with all of the growing pains of adapting to your new hearing device and everything. And we lose some of our humanity, understandably, because either were exposed to it all the time and it's something that becomes second nature to us. But you have to remember that when a person comes into your office, being able to hear is very much intrinsically linked with our competence and our ability to feel whole. And so we have to remember that people come into you and they actually are very vulnerable. They may be a difficult patient, they may they may cry, they may have any number of different responses to hearing test or being fine tuned, and you have to try to be present for them and understand that this is a very emotional experience. It's not just a clinical experience of of being tuned up. So I think the humanity and maintaining your ability to have compassion is difficult, but so important.
Carrie: [00:49:46] And there's a great take aways for families and also clinicians who are dealing with or, you know, experiencing this professionally on a daily basis, too. Is there anything, Rebecca, that I didn't ask you that you wanted to share today?
Rebecca: [00:50:03] Well, I would love to hear from your audience. I mean, they can certainly reach out to me on Instagram or Facebook or TikTok or Twitter at reb_alexander I'm sure you will include that.
Carrie: [00:50:19] I will. I will put that in the show notes for you and for us. And they can get connected with you that way, too.
Rebecca: [00:50:26] Yeah, because I think that there's a lot of questions that may come up for people and I'm happy to answer them. But I think that what's most important for people to know is that they're not alone. You know, we all go through this and it can feel very isolating and lonely, particularly when you're dealing with a hearing loss. And it's so important for people to know that they're not alone, that as difficult as it may be, there are other people who really understand and go through what you go through. And it's not to diminish your experience, but it's to let you know that there are a lot of people out there that you can relate to and develop relationships with who will really be able to see you and understand you. And so I think that's important.
Carrie: [00:51:07] I do, too. And your profession as a psychotherapist and you talked about getting help and when needed to is probably another great point for people.
Rebecca: [00:51:18] Yeah, I think that there's a lot of stigma around seeing a therapist or even potentially taking a patient if you need to. And I think it's important for us to try to break down some of that stigma because the stigma that people feel is actually only inhibiting them. And it's it's important, I think, for people to really recognize not what everybody else thinks or what they think other people will think, but what they need, what is in their own best interest in order to take best care of themselves.
Carrie: [00:51:53] Yeah. Well, Rebecca, I want to thank you so much for being open and willing to be a storyteller of your own life, because I am grateful that I had the opportunity to meet you and connect with you a couple of different times, and that we have a common connection of being deaf and actually going on the cochlear implant journey later on in life as well. But you are definitely an inspiration to me and I know you will be an inspiration to all of our listeners as well. I will link up your social media site as well as the book Not Fade Away, because I feel that you share so much in that book that listeners would really appreciate reading it. So thank you again for being a part of today's podcast.
Rebecca: [00:52:39] Thank you for inviting me. I'm glad to be a part of it.
Carrie: [00:52:42] All right, listeners know if you enjoyed the podcast. Please share this with others. I hope that you engage with me on the Facebook page. Transcripts for this episode are also available on the 3C Digital Media Network website, and thanks for spending time listening today.
Announcer: [00:53:00] This has been a production of the 3C Digital Media Network.
Episode 47: empowEAR Audiology - Jodi Cutler
Announcer: [00:00:00] Welcome to episode 47 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Hello, listeners. This podcast is a little different from my other podcasts as it is a remix of the Facebook Live event with Jodi Cutler. This conversation was too good to not put out to all of you. For those of you who do not know Jodi, Jodi is amazing. She is a mother, public speaker, writer and now movie producer. She has an adult son who has a cochlear implant and has been able to use her own personal parenting journey to help many others. In this podcast episode, you are going to hear about the exciting news of Rally Caps book turned to movie. Jodi takes us behind the scenes as Rally Caps was selected for the 31st Heartland International Film Festival in Indiana from October 10th through the 16th, 2022. For me, as an individual who has a cochlear implant and wears a hearing aid, just seeing the movie poster with Lucas, one of the main characters wearing a cochlear implant gives me a sense of excitement and belonging. Representation does matter. Take a listen to this amazing conversation with Jodi Cutler. I think we are going live. Welcome, Jodi Cutler. Thank you for joining me this morning. At least morning for me. And I have my morning coffee with the EmpowEAR Audiology Facebook Live group and this is part of 3C Digital Media Network. I am so excited to have you this morning and afternoon for you.
Jodi: [00:02:05] I'm so excited to see you because I love you and I wanted to talk to you.
Carrie: [00:02:10] I know it's been a while since you were on your baseball spree going across the country to different baseball field, but now you have some even more exciting news, don't you?
Jodi: [00:02:24] I do. I have a lot of exciting news. When I was.
Carrie: [00:02:28] When I was excited to find out more. What? So what? What do you have to share with me this morning?
Jodi: [00:02:37] Okay. First of all, for people who haven't been following the situation, I met Carrie during. Well, first I met Carrie during a zoom for the American Cochlear Implant Alliance. Tuesday talk. And I researched Carrie because she was the person who was a moderator and I, like, fell in love with her and everything that she does. So I stalked I stalker her and. And when we had to go to do the Cleveland Guardians Rally Caps Hearing Loss Awareness Day event, I reached out to her and we were able to collaborate and work together. And she's like, amazing. So I have real love for Carrie, which is why I'm excited to talk to you about Rally Caps, because back when we were in post-production and, you know, we had no idea how we were, how it was going to move forward and how it was going to play out. We were accepted to the Heartland International Film Festival in Indianapolis, Indiana, and it's like, go time, big time. So.
Carrie: [00:03:44] Well, so yeah, so that is so exciting. And just to kind of back up a little bit, Rally Caps is kind of a fusion from a book that you and your dad wrote. Correct?
Jodi: [00:03:55] Yes. My my dad and I worked together to write this book. I have been living in Tuscany for the past 25 years. So I was writing parts of the book in Tuscany and he was editing, modifying, adding parts of the book in West Palm Beach. And there was an exchange. And then finally we were able to finish the book and complete it. My dad had a story to tell about anxiety and getting hit by a baseball bat when he was young. And I had a story to tell because I wanted my son to see himself represented in literature as a child with a cochlear implant who uses listening and spoken language. Because until then I had not found that representation for my son. And I'm obsessed with reading.
Carrie: [00:04:46] Well, and I think it's so important for individuals to be able to see themselves and be represented in literature. And now you have a movie to share as well. So how did you decide that this book needed to become a movie?
Jodi: [00:05:04] My dad has a very determined personality, and from the moment the book was published, he continuously said The book needs to become a movie, and he made it his life ambition and goal to make Rally Caps the book into Rally Caps, the movie. He found Lee Cipolla, who is our multitalented, unbelievable work ethic, phenomenal director who took our book and transformed it into a screenplay, that is. Okay. It's better than the book. I know that you're not supposed to say that, but I love what he did with the screenplay. He's so talented. And. And I was so grateful because he consistently collaborated with my dad and me to. To make sure that we were on board with everything that was being done. I was totally against the idea of making it a movie, because when my dad came to me and said Lee was ready to go, I was like, Dad, it's March. I'm in Italy 2020. We're having a serious lockdown. Covid is happening. Nobody's making a movie right now. And he said, Yeah, we're going to make the movie. And I'm like, okay, Dad. And then and then, you know, your past and time went on and we kept making the screenplay even better and stronger. And then we had I mean, because I was involved, even though I was a little hesitant, my dad will never let me forget that fact.
Jodi: [00:06:35] And that's okay because he's right. I can admit what I'm wrong. And and so we had a table read, and at the table read I met Carson Minniear, who's our superstar. He's so cute and just asked amazing questions and was really talented. I started to see the other actors that were going to be involved in the movie. James Lowe, who plays Coach Ball game. I mean, he plays Coach Ballgame. He is Coach Ballgame. He's phenomenal. Like, I mean, you just melt when you see him and then that's how it started. So we were a small indie film, and then Amy Williams, our producer, was like Lee. I think it's really important to have Judd Hirsch and Amy Smart in this movie because I really believe that they would be exceptional. And so Lee was like, Yeah, that sounds really good. So Amy Williams made that happen, and suddenly our small indie film became. The bigger and more important and the fact that Judd Hirsch and Amy Smart are in the movie, and aside from the fact that they're exceptional professionals and unbelievable actors, their names are going to bring even more awareness to the representation that we are trying to make more visible.
Carrie: [00:08:03] Mm hmm. And you have a couple of characters in the movie who themselves live their life as an individual with cochlear implants or who is deaf and hard of hearing. Can you share a little bit more about those characters?
Jodi: [00:08:19] I will say this. When I found out about my son's profound hearing loss bilaterally sensorineural in Italy, in Italian, and I didn't speak the language. I was a little lost. I mean, I was determined. But but to help him learn to listen and speak. But I was a little lost because I couldn't talk to anybody, really. And in Italy, I didn't have a lot of resources. So the first time I went back to the United States, I went to a bookshop and I was looking through books on hearing loss. And I found Choices in Deafness and in choices and choices in deafness. There was the story of Curtis Pride, and when I read his story, I sat down next to the bookshelf and started crying. So for me, Curtis Pride has always had an important place in my personal journey. At another point in time, my father, who lives in West Palm Beach, near where Curtis lives, heard about a wiffle ball tournament that Curtis was having. And he went to participate because, you know, my mom and my dad were on the other side of the world. And it's you feel helpless to do anything because, you know, so he wanted to to feel like he could contribute and do something.
Jodi: [00:09:39] He went to umpire at this tournament and they became friends. So years later, when we were starting to cast the characters for the my son, who was going to be my my son's character, the child with a cochlear implant. My dad reached out to Curtis, and Curtis has two children, Colton Pride and Noel Pride. Colton, who plays Lucas, has single sided deafness and Noelle has bilateral sensorineural profound hearing loss like my son. So I had always wanted to to cast a deaf character, to play the role of Lucas and. Both me and my dad and everyone was so excited because we were able to have another character with hearing loss with cochlear implants in the film. So we have a boy and a girl and. Additionally, Curtis Pride himself has a cameo and delivers an important message. And for those of you who see the movie, wait till the credits at the end. Don't be getting up and leaving because there's another part that you're going to want to see when the credits roll. And I just the fact that it went full circle with Curtis Pride and and how I live that moment personally was just another Rally Cap's miracle that occurred.
Carrie: [00:11:02] Yeah, that is amazing. That, like, you had that incident in the bookstore where you read about him and then come come full circle and both of his kids that in the Rally Caps movie and they're just so good They're so good.
Jodi: [00:11:19] I know such beautiful people. I mean, they're so sensitive and intelligent and they're just and fun. They're a lot of fun. We had a lot of fun making Rally Caps at camps Gattaca in New York. I'm not going to lie. Like.
Carrie: [00:11:33] Amazing And yeah, so I know. So you got the movie produced and how did Ralley Caps get picked for the The Heartland Movie Festival?
Jodi: [00:11:49] I guess I I'm like Jodie, who raised a child with hearing loss and was a teacher and has helped people in Italy who have their own journeys in deafness. I have had no experience in my entire life with filmmaking, so becoming a producer has been a step by step learning experience. One of our producers, William Garcia, who was working on budget and a lot of the elements, he'd be like shooting acronyms and stuff. And I'd be like, Okay, I need you to explain that. I didn't understand anything. And then Catherine Borda, who is like taking care of all of the details and special effects and color and sound and score that I have no clue about. It's been a learning process. So in terms of the festival, all I know is that we submitted the film and they said, You've been accepted to the official selection. And I'm like, Woo hoo! And Lee and Kathy are like, Oh my God, that's amazing. But they had like. It's 25 days to finish. Finish the movie because we were in post-production.
Carrie: [00:12:58] That is awesome.
Carrie: [00:13:26] So if people want to watch this movie, how are they able to stream it or see it?
Jodi: [00:13:35] Well, we are premiering in Indianapolis on October 8th, and we are premiering in a theater called the Toby Newfields at 5:15 p.m.. If you live near Indianapolis, we're going to have a really good time at our premiere. Like everybody's coming except for Amy and Judd. They are not coming to the premiere, but all the kids are going to be there. We are planning a lot. We're trying to get involved with all of the associations in Indianapolis who I've learned that most of the people responsible within the associations are parents themselves. So there's this huge cohesive unit in Indianapolis that has like been unbelievable for me to work with them. So the Toby you can order ticket for the the premiere the next day. The ninth is another screening in person and that is at the Glendale Glendale 12 at 7 p.m.. You can order both of those tickets through Heartland International Film Festival. And we also have the opportunity to watch the movie virtually. There is a link to be able to reserve, a link to be able to watch it virtually. Those are limited. There is only a certain amount of virtual links. So anybody watching if you want to see the movie. Right now. As far as I know, this is the only chance.
Jodi: [00:15:06] Obviously, our hope is that a streamer distributor will pick the movie up after this festival. But for now, we're taking it step by step. Everyone has been so incredibly supportive. I just if I can, I'd love to give a shout out to Phonak and Advanced Bionics who have partnered with us. Their main goal in partnering with this movie has been to make as many people mainstream aware of. Cochlear implants, what they do for our kids, hearing aids, how hearing technology and devices like the Roger ON. Allow for more accessibility and more inclusion in mainstream lifestyle. And through the movie, we are trying to make sure that all hearing technology is very visible because what we all want to do is smash negative stigma regarding hearing loss. We're tired of our kids having to explain themselves constantly. We want people to look at a hearing aid and a cochlear implant and be like, Oh, they're just like Lucas. Or Oh, they're just like Nicki, So they don't need to go into this explanation about their hearing loss before people are able to know who they are as individuals. And this is what our real goal is for Rally Caps.
Carrie: [00:16:26] And I love the poster too. With you can see Lucas and his cochlear implant and a vibrant blue color. And that is just so amazing to have that representation just even visually. But I can't wait to see the movie as well to have that representation. Thank you. Is there anything else I should ask you or that you want to talk about with the movie as we're live this morning?
Jodi: [00:16:52] I just. I could talk for hours and hours. It's like I just wanted to I kind of want to add something that that I had this conversation a couple of days ago because I'm moving to the United States. A lot of people who are from my forum are coming to visit me to say goodbye, who I've met virtually. And because of COVID, we haven't been able to have our usual Congresses. So everybody can meet in person and people are coming to visit One of the people who came to visit is a woman who had profound was born with profound hearing loss, wore hearing aids for her entire life until she was 50. When she was 50, she decided to get a cochlear implant. And what was really interesting is that she was because a lot of you with the forum, you help them and then they pay it forward and help other people who are nervous about cochlear implants because we're always scared of the unknown. So the more known we make it, the easier it is to make a decision. She was like, Jodi, I have people come to me who are about to get married and they're like, Should I have a cochlear implant before I get married or after I get married? And she goes, Jodi The cochlear implant changed my life. It helped the real me come out of my shell because I, I didn't feel isolated. I felt more secure that I could hear things around me and. I became a new Maria Luisa. Like now I drive places. I go on trips alone. I, I started working. So she goes, make sure you get that cochlear implant before you get married, because the dynamic of your relationship could change when you go from someone who is a little bit more dependent to a person who becomes totally independent and starts making decisions on her own. And I just I thought that that that blew me away. I just thought that I wanted to share that because it happened a couple of days ago and it's still going around in my head.
Carrie: [00:19:00] But. But because of all of your sharing and willingness to share about your own journey and then the Rally Caps and now the movie, it really opens up opportunities for people to have a conversation and like you said, smash stigma and make it something that's mainstream and out there and that these kids are amazing kids no matter what. They just have amazing technology on their heads that helps them listen and talk. And that is kind of, I think, the message that is really positive for Rally. Caps.
Jodi: [00:19:36] And another thing that I've loved since we started sharing is that parents are contacting me and they're asking me how they can have virtual watch parties so that they can get as many people involved as possible. While we have this window of opportunity to see the movie, like one of our actors’ principals where he goes to school, wants to have a huge watch party for the whole school. So, I mean, literally people are taking advantage of this opportunity to try to spread as much awareness as possible in this moment that we have. And my hope is that people love the movie so that it just explodes from here because there's there are so many ways that we can reach an incredible amount of people with this information to spread awareness.
Carrie: [00:20:26] And so I know we have this window of opportunity to watch it right now, But what is your hope after the film festival is over?
Jodi: [00:20:38]When the film Festival is over, I'm going to my new place in West Palm Beach, getting my kids situated and set up. And my hope is that within that period of 15 days, everything explodes and we have an opportunity to to discuss with a distributor, talk to a streamer, to get it to as many people as possible, as quickly as possible and as internationally as possible. Because as you well know, we are a global community. In the past I know the deaf community has been strong, has been visible in the media, has had an incredible voice. What I have realized, and I can attest to is that our community, which is just another shade of hearing loss and deaf, including the listening and spoken language aspects or even bilingual communication. And, you know, there are parents who make choices in deafness to to use sign language and and and to use spoken language. But we have a powerful community that is dying to be represented, and that is not just in the United States, that is internationally. And I'm looking forward to the entire experience.
Carrie: [00:21:57] Well, Jodi, I just want to say you said you loved me at the beginning. And I just want to say that I love you just as much as I love you. I just love everything you do. And you have such an open heart and willing to share. And you are just. And by like, that's all I can say is you are on fire and you are making such a difference.
Jodi: [00:22:20] I need to say one thing to the people who watch you like Carrie is amazing. And there were moments during the Rally, during the Rally Caps, hearing Loss Awareness Day events. And because we did everything in such a short amount of time and I don't know, she must have sensed that I was losing my mind. She would send me these like these affirmations, daily affirmations that were they were so, so kind. And I just there have been so many people who have been present and I so appreciated you just being kind, like, for no reason. And that's what's been happening with Rally Caps. We have been experiencing kindness, generosity, love, miracles. And I just hope that that continues.
Carrie: [00:23:06] And I'm sure it will. So thanks again for joining me and live this morning. I'm hoping that we didn't have too many glitches with the Internet connection. But after this, we will share this with others who weren't able to join us live this morning and put links to the Rally Caps movie in the comments so that if people want to either attend in person or virtually they have the information that they need to do that.
Jodi: [00:23:38] So thank you again. Thank you so much. I love you. Have a great day.
Announcer: [00:23:43] This has been a production of the three C Digital Media Network.
Episode 46: empowEAR Audiology - Dr. Uma Soman
Announcer: [00:00:00] Welcome to episode 46 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the EmpowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe or invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowEAR Audiology Podcast tab. Now let's get started with today's episode.
Announcer: [00:01:22] Hi. I wanted to take a moment to let you guys know about Carrie’'s new webinar. She has created a wonderful new webinar in collaboration with 3C Digital Media Network titled Back to School Optimizing the Learning Environment for Students Who Are Deaf or Hard of Hearing. It is an amazingly informative webinar with many helpful resources. You can go to 3C Digital Media Network dot com courses to access it, and from now until September 16th, we have a back to school promotion for 30% off all webinars. So I encourage you to check it out and take advantage of this offer before it expires. Now back to the episode.
Carrie: [00:02:00] Welcome to the empowEAR Audiology podcast. Thanks for joining us today and I have a special guest with me today and I'm going to give you a little introduction. But my guest, I have Dr. Uma Soman with me today, and she is a teacher of the deaf or hard of hearing and a listening and spoken language specialist, auditory verbal educator. Over the last 20 years, Dr. Soman has worked directly with children, their families and their educational teams in a variety of settings. She has also worked with graduate students and mentored professionals pursuing their listening and spoken language specialist certification. Currently, she serves in two roles the first as a co-founder and director of professional development at Listening Together, a nonprofit organization that advances the education and rehabilitation of children who are deaf and hard of hearing through parent empowerment, professional development and public awareness around the world. The second, as an assistant professor in the Communication Disorders and Deaf Education Department at Fontbonne University in St Louis and both of these roles, Dr. Selman works to prepare teachers, speech language pathologists and audiologists to work with with children who are deaf and hard of hearing and their families in a variety of settings. Dr. Soman has served on several boards, including the Option Schools Board and the AG Bell Academy, for listening and spoken language. So welcome, Dr. Soman.
Uma: [00:03:40] Thank you, Carrie, for that lovely introduction. And please just call me Uma.
Carrie: [00:03:45] I will. But it's so great to have you here. And I was so excited when I had the opportunity to actually meet you in person in May in Washington, D.C., at the cochlear implant conference.
Uma: [00:04:00] Yes. I mean, I have known of you and maybe we've interacted, but we had never met in person. So that was fantastic.
Carrie: [00:04:08] It was. And then I said, How would you like to join me on the empowEAR Audiology podcast? And you graciously said, Yes. So thank you for joining today.
Uma: [00:04:19] Thank you for inviting me.
Carrie: [00:04:21] I always like to ask my guest, how did you get to the point where you're at as far as a teacher of the deaf and just kind of was there something that spurred you into the field?
Uma: [00:04:36] So, you know, as I was preparing the questions. What I wanted to share today on your podcast, the word that kept coming up over and over was this. theme of Opportunity. So I got into this field. Initially by just dumb luck happenstance. My younger sister was diagnosed with bilateral, profound hearing loss many, many years ago. We were living in the Middle East at the time we moved to India. Given the services or lack of services, I should say for a very young child, my mother became a teacher of the deaf. My sister started receiving, listening and spoken language intervention from somebody who was trained by somebody who was trained by somebody by Dan Ling. Right. So this just the opportunity. So I've been going to listening and spoken language interventions since I was eight years old. There happened to be people on my mother's side of the family who are deep in education and teaching. So that path sort of just opened up in front of me and I happen to be decent at it. And I was again opportunity. I had the opportunity to train at one of the best possible programs in India in the field of deaf education. Over there I met a mentor who directed me to the Clarke School for the Deaf Program in Northampton, Massachusetts, for my master's. I got the opportunity to intern at Clarke Jacksonville. I got the opportunity to get a job there. Then through, like a recommendation, an opportunity to work at Vanderbilt, an opportunity to pursue a Ph.D. as a National Leadership Consortium and Sensory Disabilities Fellow. The opportunities have been endless, leading all the way up to what I'm doing today at Listening Together, as well as for fun on university.
Carrie: [00:06:51] Wow. I love how your personal story and experiences really created a lot of opportunities for you, and kuddos to you for taking so many opportunities too, because sometimes people are afraid of change and to take opportunities. And obviously that is not something you're scared of.
Uma: [00:07:14] No. And it takes intentional choosing a yes to something is a no to something else, and it takes hard work. The opportunity is just the beginning. What you do with it is what matters.
Carrie: [00:07:27] Mm hmm. Well, I'm glad you are good at saying your best Yes. And your best No’s along the way, which I have a feeling has a lot to do with your nonprofit organization that you and a colleague had started called Listening Together. I would love to hear more about your mission for Listening Together and what you guys do.
Speaker4: [00:07:54] Sure. So back in late 2016, just as I was finishing my PhD at Vanderbilt University, Ahladhini Rao Dugar and I started working together on this passion project that would eventually evolve into listening together. And we both grew up in India with family members who were deaf or hard of hearing. And we were quite familiar with the disparities in outcomes for children who are deaf and hard of hearing in India and the Indian subcontinent in general. Children and families who have resources and to some extent luck in finding the right professionals do well. And those who either don't have the resources or are aren't in a geographic location that has professionals or are working with professionals who are still running off of old methods. Outdated training have different outcomes. And at that point in our careers, both Ahladhini and I were at a point where we were ready to figure out what was our opportunity to give back, to share what we had learned so we could contribute to the process of making the difference. In no way were we thinking, Oh, we're going to fix this, or we've learned things in the quote unquote West that we are going to bring to India. It was always a what can we do with our knowledge to support what is happening that is relevant, realistic for the populations that we will be in contact with, for the communities of parents and professionals. So this sort of grew from working with one family. And by the middle, early 2018, I want to say Uma Medadidi, another parent, not another parent, a parent of a bilateral implant user, joined us and a team of the three of us formed the Listening Together nonprofit organization. Our mission has always been to support children, families and the professionals who work with them. And eventually we came to this statement of we want to transform lives of children who are deaf and hard of hearing around the world through parent empowerment, professional development and public awareness. We truly envision a world where financial restrictions and geographic constraints don't determine a child's outcomes, and every activity we do is towards this work of transformation.
Carrie: [00:10:41] Now, what a great mission. And the fact that you have lived in India and you've been there, I'm sure gives you so much insight into what you're currently doing, even though you want to make an impact across the world. But it sounds like it started because of everything that you've already experienced personally as a family and then with others who are India, too.
Uma: [00:11:06] Absolutely. And I would say that we don't claim to know what the ground reality is, but at least we feel we know the questions we need to ask because we're not on the ground every day. So partnering with people on the ground, understanding their day to day facilitators and challenges and successes and barriers. And we speak the language. We have a sense of the culture. And that, I would say, is a plus.
Carrie: [00:11:39] For sure. You mentioned that you have some different components of the program as well. So what kind of or types of programs do you offer through listening together?
Uma: [00:11:52] So our primary audience is families of children who are deaf and hard of hearing. As well as the variety of professionals who support these families. Again, notice that I'm not saying we work with children because that's not the focus. We work with families. We empower families and caregivers to support the development of their children, to engage in interprofessional collaboration. So that's one aspect, the parent empowerment piece. We've done it sometimes through individual coaching, but almost always the model has when group parent coaching, developing materials or resources or talks everything virtually. We don't have a brick and mortar anything in the world and connecting families with each other, connecting them with the supports within their communities is part of the Parent Empowerment Program. I mean, it's easy to talk the talk. The parents are the experts on the child and the parents and the leaders of this team. But what does that mean? How do we get parents to be able to do that? Is the focus of the Parent Empowerment Program. The professional development piece, and we actually call it the listening and spoken language professional enrichment program, because almost everyone we work with has a background or degree in a field related to working with children who are deaf and hard of hearing, either as an SLP or audiology or as a teacher. And the goal there, again, is to take the skills they currently have and enrich their knowledge and skills so that not only are they learning the latest evidence based practices, but learning how to implement them. Keeping the family at the center of all of this, always because the models have been the models in India in particular are a little bit different, influenced by culture, social norms of how a parent and professional interacts with the power dynamic is, and so on and so forth.
Uma: [00:14:14] So professional development is about addressing the building capacity within the knowledge, the skills, as well as the attitudes and the dispositions. We really want to see parents and professionals working in collaboration to best support the child. So we have these two sort of separate tracks and then we have the public awareness piece. And that to me is sort of our everybody together kind of track. And under that we released a children's book. We have our free webinars that are open to parents and professionals. To the best of my knowledge, when we first started these webinars, it was one of the maybe the only but definitely one of few platforms where information, the same information was being shared with parents and professionals. So just that bringing everyone together, understanding perspectives, it's not us versus them, but all of us together. Thus the Listening Together together piece matters a lot to us. We offer these programs in English, obviously, but also in several regional languages. So in the past or even now, the webinars are offered in English on one day and Hindi same content in Hindi on the next day. We've done professional development courses where if we have enough for a group of people, then we run the same course into different languages. And anybody is welcome to come to any people are welcome to come to both if that is how they want to participate. Right now I'm trying to model where I teach in English on Saturday and then we have quote unquote office hours on Monday in either Hindi or Marathi. And that's an experiment. I'm curious to see how that goes in ensuring that, again, opportunity people have the opportunity to get this information and develop their skills.
Carrie: [00:16:26] That I get why you say listening together because the parent and professional pieces or family and professional pitches so important to help that child. So talking about opportunities to how do people find out about the different courses or webinars or opportunities that you have?
Uma: [00:16:48] So our social media is our best starting point, but what we have discovered so we'll post on our Facebook page, we'll post on our Instagram page, we'll post on our LinkedIn page. Those are our most active where people will find us. But we also have WhatsApp groups, which WhatsApp is a text app and we have a parent group, we have a professional group and we are finding out that through the sharing of these WhatsApp messages and groups is also another way that people are finding us.
Carrie: [00:17:26] That's the great idea to have that group so people can continue the conversation of the webinar or whatever being shared. Is there anything about all this, about Listening Together that you wanted to share that I didn't ask you about?
Uma: [00:17:44] I think just just from a personal point of view, it's been a. A long time ago, I thought my career was headed in a certain direction and I was going to get my PhD, be a researcher, or be in an administrative role. The whole idea of the nonprofit and the impact it can have and the investment we are making is a big one. So I didn't talk a lot about this, but our financial model is essentially take what you need, give what you can. All services to families are provided for free because again, we don't want financial constraints to be a factor. All services or trainings to professionals have a fee but have generous scholarships because again, we think we are making an investment in this human capital that is going to transform not just the lives of the children they work with, but the the landscape for what is possible for kids who are deaf and hard of hearing. So just that investment and the transformation is an exceptionally exciting part of it. Our priorities for the coming years are increasing access, building capacity and fostering leadership because we know that leaders come in all forms and from all walks of life, and I think that's where the transformation will happen.
Carrie: [00:19:20] Well, thanks for that vision of Listening Together and everything that both of you have put into the nonprofit. Because, like you said, you're building human capital in so many different ways and also influencing the professionals along the way, too. So thank you for that.
Uma: [00:19:39] Thank you.
Carrie: [00:19:40] And I was going to switch gears a little bit with your other role that you have in your life. And I think it's a great topic because we are getting ready to transition into another academic school year, which is hard to believe. And we know that students who are deaf and hard of hearing and whether it's an early intervention or a school age, really require some specialized professionals and support along the way. So I would love to take a deeper dive into your role as a teacher of the deaf and also as a professor, and kind of talk about talk about that. So maybe to get started just for by listeners, can you just share about the role of the teacher of the deaf and hard of hearing and how that might have changed over the over the years, too?
Uma: [00:20:34] Sure. Sure. So. I mean, it should come as no surprise to anyone that children who are deaf and hard of hearing and their educational trajectories and opportunities have changed over the last 20, 30 years. When I started in this field 20 years ago this year, it was. Mainstreaming was a goal, but it was not uncommon for children to start in schools for the deaf and then have the goal of mainstreaming. During my time in this field, we've gone from children, come to schools for the deaf to early intervention, happens in the home, and then there are some children who never come to a specialized program. They just go directly into the general education setting. And even if they're, quote unquote, caught up at three. They still have to keep making progress to keep up with all the language, academic, social demands of what it takes to learn in the school. And it is important that a specialized professional is there to support them, not to say that they will always need help, but to monitor their progress to make sure they're not falling behind. So I think fundamentally the rule, the way it has changed is it used to be that students would come to the teacher.
Uma: [00:22:11] And now the teacher is going to the students. And don't get me wrong, there are still teachers of the deaf in programs like option schools where children are coming to them. But that's a model that has changed over the years. We used to have K through 12 programs for the deaf and now they're shrinking and shrinking and shrinking to the point it's going to be early intervention and early childhood with specialized programs for the deaf designed specifically for children who have additional challenges. So in some ways, a teacher of the deaf and all of these roles still exist. But the way the role is changing is it used to be that the teacher of the deaf was teaching kids to. Speak. And now the teacher of the deaf is still doing that. But hearing technology is also helping them to learn to listen and learn through listening as well as really be a part of the general education sector. So to me it comes down to. How are teachers who are itinerants now supporting children not just survive but thrive in an inclusive setting, facilitating inclusion.
Uma: [00:23:37] If a just say an outside, a general ed teacher would say to you, what if you had to give an elevator speech about a teacher of the deaf? What would you say? How would you explain that?
Carrie: [00:23:53] Yes, what a great question. I should have definitely rehearsed this. And I'm going to make all of my students rehearse this as they prepare for job interviews. Okay. So if I were talking to a general education teacher with my role as a teacher of the deaf is which is different than that of a speech language pathologist and that of a special educator. I would say as a teacher of the deaf, I have specialized knowledge and skills in helping children develop listening and spoken language, particularly within the context of developing, reading, writing and academic skills. I am also someone who can help them develop their self advocacy skills and social skills so that we are on the path to leading productive as independent as possible lives post high school.
Carrie: [00:24:49] Wow. That was a great elevator speech.
Uma: [00:24:52] I'm glad this is being recorded because part of me is like, Oh, I want the script for this.
Carrie: [00:24:59] Now we can just pull that little piece out and then we can have elevator speeches for teachers of the deaf and hard of hearing.
Uma: [00:25:07] Yeah, yeah, yeah. And it is a unique role, which is different than that of a speech language pathologist or a special educator. And I've been very lucky to work on teams where all three of these professions were working together, bringing their unique perspectives to support a child.
Carrie: [00:25:28] Mm hmm. Yeah. And just being in the schools, as well as an audiologist of some districts that we go into. And there possibly would only be one or two kids. And if they haven't had that experience before, they are not questioning, but they want to know exactly what is the role and how do they serve that student so that they can have the build the capacity too.
Uma: [00:25:56] Absolutely. And there is a new position statement by counsel for Exceptional Children's DCDD. I think that's still their name, the department, not department division of Communication Disorders and deafness about the role of the teacher of the deaf and the contribution that they make. So if listeners are interested, check it out.
Carrie: [00:26:20] Definitely. And we can even post that or link that in the show notes to so people can take a look at that. I know you have your role at Fontbonne as a professor too. And so I thought I would ask you, what are some of the requirements and curriculum focus for becoming a teacher of the deaf or hard of hearing?
Uma [00:26:40] Sure. So at Fontbonne and Fontbonne has been doing this for a long time, preparing teachers and SLPs who specialize in working with children for deaf and hard of hearing. We currently have to accept the Office of Special Education Projects funded grants where teachers and speech language pathologists interested in specializing in either working in early intervention or as itinerants receive tuition funding to do this. So let me just plug the grants right there at the top.
Carrie [00:27:16] I'm a huge plug because I'm sure we're going to get into shortages later on, too. So what an opportunity again, opportunity for someone who's interested to gain more knowledge.
Uma: [00:27:29] Absolutely. So depending on the program you're in, either your focus is early intervention or your focus is inclusive settings. So itinerant, itinerant, teaching kinds of situations. But both grants the interdisciplinary preparation of teachers of the Deaf and SLPs to provide early intervention as well as the Fontbonne Northeast Interdisciplinary Preparation Project. Our focused on making sure that people are graduating with skills to work in one of these settings with specialized knowledge and skills. So what do you need in terms of background? A bachelor's degree is important. People coming into the speech language pathology program are often coming in with a bachelor's in communication disorders. People coming into the deaf education program are often coming in with a bachelor's in education or related field. I want to encourage everyone listening to know that you don't need a degree in education or speech language pathology is not required to start this. There are other ways of considering entering the field, but a bachelor's degree would be the first step. We have the grant has allowed scholars to join us remotely. So we have several students this year as well as last year. Who are not local to St.Louis. They live where they work. And they get to participate as they are working as teachers. So that would be the two key aspects of the program and the program focus ranges, right? So you're going to learn about auditory development and language development and literacy development, but you're also going to learn about how to work in interdisciplinary teams, how to engage in collaboration. And I think that is a pretty unique feature of what the Fontbonne program focuses on. The interdisciplinary piece almost all classes are taken with teachers and SLPs in the same room, understanding each other's roles, learning from each other.
Carrie: [00:29:59] And you said this is grant funded, right? Right now. How many? So my first question is, how many years have you guys been able to do this? And then second would be, how many students do you typically accept every year?
Uma: [00:30:14] Okay. Good questions. And how many years have we been able to do this? Fontbonne has a long history of being federally funded. The early intervention grant is on its second iteration. The Fontbonne Northeast Collaborative is also on its second iteration. I mean, knock on wood. But we've had success with receiving grants to support trainees. How many students? The largest class we used to be limited by how many clinic placements, our school field placements we could manage. But if you are remote, as long as we find a good placement for you where you will have supervision and and so on and so forth. We are not limited by numbers as such as we were before. We do have I believe it's we have funding for 32 scholars in each grant. And those numbers might be a little bit off, but I can look them up over the period of four years. So we're not getting 32 people one time and taking them through four years, but like eight, eight and eight or something like that.
Carrie: [00:31:31] Okay. And then when they finish the training requirement, they would then have a master's in deaf education.
Uma: [00:31:40] Yes, yes. Masters of Arts in deaf education or early intervention. And if they're a speech language pathologists, they would have a parallel master's.
Carrie: [00:31:51] Wow, that's great. And we can definitely link information about that as well. So another opportunity to. Absolutely.
Uma: [00:32:01] And anyone listening, if you are thinking, hmm, I wonder if this is for me, just reach out to us. We'll figure it out. We have a student this year from a completely different part of the world who is managing the program well. So if you want to be a teacher of the deaf or a speech language pathologist, we'll figure out a way to help you do that.
Carrie: [00:32:24] Wow. So the speech language pathologist that they would end up with a master's in speech language pathology then, but with the focus on working with deaf and hard of hearing.
Uma [00:32:33] Absolutely.
Carrie: [00:32:34] Hmm. That's always good to know as a specialty professional, too. Well, I wanted to talk a little bit about the shortages. Do you see just from your experiences over your 20 years of being a teacher of the deaf, have you seen the shortages and.
Uma [00:32:54] Absolutely.
Carrie: [00:32:55] What can be done about it?
Uma: [00:32:57] So, I mean, I knew you were going to ask this question, so I went and pulled some data. According to the US Department's listing of teacher shortages in 2018. 19 out of the 43, states or territories are reporting a critical shortage for special education teachers in general. Of those nine states specified that the shortage is for students who are deaf and hard of hearing. I think there is a couple factors to consider. One is. Deafness is a low incidence disability, right? So there and like you said, you go to schools and there's maybe one or two kids. It is unlikely that a school with the budgets being cut and the teacher pay the way it is, can afford to hire one teacher for one student. So we're not seeing a lot of people enter the profession. That is number one for the shortage. The work is not easy in the current climate. Teachers aren't being supported the way they need to be to continue to do the work they are. And this is all teachers. I'm making the blanket statement. We could be supporting our teachers more in a variety of ways.
Uma: [00:34:18] I think that's what has created this shortage. But there are programs around the country that are not only training new teachers to enter the field, but are also creating some alternative pathways. So you might already be a teacher working in an adjacent field, and you can then add this certification to make a somewhat of a lateral move. So you're bringing your existing experience and expertise and adding this on to support children. I think the only way forward is through and we have to understand and address the shortage issue and come up with a variety of ways to continue to support children. I think the pandemic and the tele education, tele intervention piece really helped open up some opportunities and stop people from dismissing tele delivery as a last resort kind of model. So maybe that brings about some changes in the coming years, decades that there continues to be a shortage. And we need to have more professionals trained to do this because like I said, a teacher of the deaf is not the same as a speech language pathologist or a special educator.
Carrie: [00:35:46] Mm hmm. Yeah. And it's great that you at Fontbonne have an opportunity to offer the virtual, because I feel like there's not a lot of universities in the country that offer a program that is specialized in deaf education, or it's a program that might not be serving a lot of kids in a mainstream setting. It may be more focused on serving students who are in a school for the deaf or something like that.
Uma: [00:36:17] So. Right. And it's my intention. I mean, our faculty. Even our faculty is remote. Like, I live in Illinois and teach at a university in St Louis, Missouri. Our other faculty member lives in Massachusetts and is teaching in the program. So it's not as a as a reaction to something. This was an intentional design to meet more people where they are to reach a wider group of people.
Carrie: [00:36:47] So this is kind of changing just a little bit, but not too much. And it kind of gets into maybe. Um, supervision, but more into the real life of being in the schools with whether you're in early intervention or in a school age. But how do you teach or how would a specialty professional like a teacher of the deaf or hard of hearing, integrate themselves into that educational team?
Uma: [00:37:17] So again, another great question. I think the IEP is the IEP meeting, the individualized education program meeting for any child is a good starting point. If everybody on the team has done their job the way they should. By the end of this meeting, we have identified a child's needs and a child's strengths and what the child needs to work on and who will work on it and when and how. So in most situations, an IEP provides a blueprint or roadmap for how each specialty professional is going to contribute to the child's development. And then you might have an intern or an itinerant doing a 30 minute pullout or a 20 minute consultation or a 15 minute push in. And the service delivery models vary. But what we do with our time with the child and the teacher and the peers is, again, what matters. So the the theory part of this is, oh, the IEP tells you how you integrate into this team. But the real world, the soft skills part, is essentially all about interdisciplinary practice. So when I was at Vanderbilt University at the Mama Lere hearing school and we were just seeing this need for kids with CIs in rural counties around Nashville who needed support at school and they didn't have features of the deaf. So people in administration put a lot of faith in me and said. Go take a look, see what we can do. And I was doing outreach without really knowing what it was that I needed to do. And it turns out it is as simple as really listening to the teachers, understanding what their needs are, what their challenges are, and knowing that you are there to support them, support the child, and not there to tell them how to do their job or judge them or evaluate them on on any of that. So the IEP tells us where we need to be and what we need to work on. But our interdisciplinary skills help us do that job. Mm hmm. Which is, again, why I think it's pretty phenomenal that on Fontbonne has brands where one of the focus area is interdisciplinary work.
Carrie: [00:39:51] And you had real world experience of just going out to some rural area outside of Nashville and figuring it out, which probably helps that bring that experience to you as a professor, too.
Uma: [00:40:06] Yeah, yeah. It helps to really keep being present and sharing what you can offer. I did an in-service at 2:30 in the middle of the night for a kid I work with in North India like a month ago. And I was like, Thank goodness I've done this enough times because otherwise doing this at 2:30 in the morning, in the middle of the night would be a little bit challenging. But that's what it is, right? You want to start a conversation? This kid coming into your class is not a problem, is not someone to pity, is not someone to just pass along. This is a kid with potential who will learn and the strategies you use to teach. This one child will probably benefit ten others in the class. And once you establish that, then it's so much easier to work together.
Carrie: [00:40:57] It is. Which kind of segues into another great question that I have for you is we talked a lot about the teachers, but how do you build capacity for students who who are deaf and hard of hearing and to have those self determination and advocacy skills as a teacher of the deaf or hard of hearing?
Uma: [00:41:17] So that's a great question, Carrie. And I think it starts even before you get to the student, right? The child is going to take their cues about their identity, their self image from what the parents are modeling. So I think it starts with how do I, as a teacher of the deaf, support the parents, empower the parents to take charge, to lead, to share their desired outcomes and guide the team on this path. The child is going to pick up their cues from them. And I have a cut this out if we run out of time. But I'll give you a short story. I work with a group of kids when they were in preschool. And as a preschool teacher, you talk to the parents a lot because there's a lot to discuss every day. And I remember very distinctly thinking, wow, I have three different families to describe and look at their child using three very different sets of words. One would say, I have a child with profound hearing loss and wears cochlear implants? One would say, I have a child who is deaf. So with her cochlear implants, she's like hearing. And another would say, yeah, my daughter has a hearing problem. She needs hearing aids. Happenstance. I ended up working with these kids on social skills and the social skills group when they were in third grade. So I had worked with them when they were three and four, and now I was working with them when they were in second and third grade. And lo and behold, these were the words that they were using to describe themselves. Right. And I'm thinking, Oh. It's not. I can't intervene. I can. But intervening now is going to lead to a certain path. Whereas if I had intervened or talked or had a conversation about the word choice and the attitude that families were conveying to their children about their hearing loss of their deafness. Where would we. Where would we be today?
Carrie: [00:43:34] Hmm?
Uma: [00:43:35] So that has always stayed with me and I have made significant changes having learned from that experience and how I talk to children and families. One of the things that I have changed pretty drastically in the recent years is talking to the child about the fact that they have an IEP coming up and sometimes it starts very small. It's like, Oh, we're going to have a meeting, mom is going to be there and Dad is going to be there, and I'm going to be there. And you list all the team members. Mm hmm. But hopefully you progress it to say we're having a meeting. What should we discuss? And just recently, one of the kids that I worked with a long time was just I was so impressed. He said, Well, reading and writing is going, okay, that's not a problem. I could use some help with writing, so some time for that would be good. And then recess is still tricky. I think I need some help from the social worker. Well, okay. Do I even have to be at this meeting, or should we just say that this is done?
Carrie: [00:44:47] That's so insightful that the the student was able to see, okay, these are my strengths, this is where I could use some help and be able to ask for that and articulate it.
Uma: [00:45:00] Absolutely. And this is not a traditionally superstar student, right? This is a student with significant challenges and significant delays. And when we started, the student had no idea what it meant when I said, what's going well at school? What do you need help with? And it took us a few years, but we've definitely built up some self-advocacy and self determination skills.
Carrie: [00:45:25] Right, which is probably for a lot of itinerant teachers. One of the plusses of the job, to be able to have that continuing relationship over the years with students and a joy for you to be able to see the progress that they do make.
Uma: [00:45:39] Absolutely. So when we did. Sorry, I'm changing topics a little bit, but we did a survey of itinerant teachers, which is what we presented at the Cochlear Implant Alliance Conference and in our pilot group, which was about 60 teachers. Teachers said they spend anywhere from 20 to 40% of their time with the child on self-advocacy skills.
Carrie: [00:46:04] Mm hmm.
Uma: [00:46:05] So that continues to be a big part of what it is that we do.
Carrie: [00:46:08] Right. And it's an important part because it's a life skill that they're going to need no matter what phase of their life they're in. If they're getting a job, going to school, being in the community, they have to know more about themselves in order to be self-determined, to ask for the services and supports that they will need in the future.
Uma: [00:46:29] Absolutely. And you know, Carrie, I mean, again, it's been an honor and privilege to have interactions with adults who are living this right. Adults like you, adults like my sister who are deaf, who are hard of hearing and are navigating life because their deafness isn't going to stop them from doing anything. Maybe there is a different way of doing something, but that doesn't mean they can't do it. There's no reason to stop for any reason. And I feel like. I came into this field knowing that the child sitting in front of me today or this year is going to be an adult one day, and I need to always keep that in mind. This is not about passing fourth grade or learning trigonometry. This is about living life. And whatever I am doing should contribute to a good life.
Carrie: [00:47:31] I love that. It's a great opportunity.
Uma [00:47:36] Yes. I'm telling you that word. I mean, as cheesy as it sounds, when I was looking through these questions, I mean, there's this word that keeps coming up. Maybe there's something there.
Carrie: [00:47:49] There is something there for sure. Is there anything that I didn't ask you that you wanted to share today?
Uma: [00:47:58] No. I just want to share that being a teacher of the deaf is a really fun, joyous. Calling an opportunity. And those interested should really consider exploring what this path is and how you can contribute to the lives of children who are deaf and hard of hearing.
Carrie: [00:48:22] And if listeners would like to reach out to you, how can they get ahold of you?
Uma [00:48:27] So I am on social media under my name, Uma Soman. Almost all of my social media is professionally focused, so you can find me on Facebook or LinkedIn. And you can also write to me via email. I am Uma.soman@listeningtogether.com or I am at usoman@fontbonne.edu. Reach out if you want to learn more about anything that I shared today or just want to chat about any of these topics.
Carrie: [00:49:01] Well, I want to thank you today for the opportunity to interview you and the EmpowEAR Audiology podcast. I can just see your passion for what you do, just shine through. And it really does with Llistening Together nonprofit. And then those students that have the opportunity to have you as a professor are really in for a great treat because I'm sure they see your passion shine through as well and become a better professional because of you. So thank you for all that you do, and thank you for being a guest today.
Uma: [00:49:36] Thank you, Carrie for inviting me and creating this platform to share information.
Carrie: [00:49:42] All right. And thank you listeners for listening to the EmpowEAR Audiology podcast. If you like this show, please share with others. And if you can take the time to give a five star review, I would appreciate that so others can find it and enjoy listening as well. Thank you.
Speaker1: [00:50:00] This has been a production of the 3C Digital Media Network.