EmpowEAR Audiology Podcast Transcripts

Episode 0: Intro PreEpisode - Dr. Carrie Spangler

[00:00:00] Hello everyone! Welcome to the introductory podcast for EmpowEAR Audiology. I am your host, Dr. Carrie Spangler, an educational audiologist with over 20 years of experience, and an individual who has hearing loss and has lived with hearing loss her whole life in this vibrant hearing world. I am so excited to venture on this podcast journey and hope that all of you as listeners will venture on this journey with me becoming empowered.

[00:00:51] We are all a product of the experiences that we have in our life, whether they are positive or negative experiences. One of my greatest strengths and my greatest challenges has been my own personal journey. Living with hearing loss in this hearing world. When you're going through the moment of ups and downs, it's hard to recognize in that moment, what might evolve if you would've told me in my tween and my teen years that I would become an audiologist, I would have never believed you.

[00:01:32] Thankfully those seeds were planted and watered along the way. And I was steered into the field of audiology being empoweared.   When I was trying to come up with a name for this podcast, I wanted the name to be bold, inspirational, and say something about the focus of is as I started brainstorming different topics [00:02:00] Possible people I might want to interview in the future and I realized how many ways and people make up my life puzzle.  it's the different pieces of my own personal family, friend and community experiences better with the pieces of my professional learning, teaching research and technology. That has empowered [00:02:28]  me over my lifetime. I have some of my best ideas and practices by having conversations with others, sharing stories, sharing knowledge. So why not have conversations with Carrie in the upcoming episodes? I hope that you will hear from leaders in the field of audiology, speech, language pathology, educators of the deaf and hard of hearing [00:03:00] otolaryngologist, hearing technology experts, families who have children who are deaf or hard of hearing [00:03:07] And those who walk in the shoes of hearing challenges daily. I also plan on intertwining my own personal hearing loss journey, living with hearing aids, getting a cochlear implant, accommodation that have been used along the way, personal and professional stories, challenges, and barriers that I have overcome.

[00:03:34] It is my goal to bring to you experts who have empoweared me and the hearing loss field, as well as those who have braved the daily hearing challenges and empower others to do the same. I hope all of you will subscribe today and get notifications. I've released episodes [00:04:00] every other week and the first episode, I will be taking a deeper dive into my own personal healing journey to unravel different points that led me into the field of cardiology.

[00:04:12] I hope that you would join me. This has been a production of the  3C digital media network. 3Cdigital media network is a company focusing on connecting world and innovative ideas to enhance individual communication for all who want to be to improve how they think live and express themselves.[00:04:39] Again, I hope you will join me in my first episode. And I look forward to sharing more stories with all of you. Have a great day. [00:05:00] .

Episode 1: EmpowEar Audiology - Dr. Carrie Spangler

[00:00:00] Welcome to episode one of EmpowEAR Audiology with  Dr. Carrie Spangler.

[00:00:16] Thank you for joining me and my first at the show podcast for empowear audiology. Again, my name is Dr. Carrie Spangler, and I am your host and I'm a passionate   audiologist with a personal hearing journey. And I hope you subscribe today. So you don't miss any of the upcoming episodes from different professionals.

[00:00:37] and individuals with personal journeys related to hearing challenges. But today I really wanted to take a deeper dive into my own personal journey of living with hearing loss as this is really the reason that I wanted to start this podcast is because of my own personal journey.

[00:01:01] I have been empowered by many individuals along my life. And I wanted to share that with you and hopefully challenge each of you along the way. But as a kickoff podcast, I hope this will inspire and motivate each and every one of you as listeners, whether you have a direct or indirect relationship to the world of hearing loss and audiology.

[00:01:27] So I'm really taking a deeper dive into my own personal life of living with hearing loss. Of course I can't cover everything. That would be a long, long podcast , but I hope that you will be able to experience my way of emotions and experiences, both good and bad, and you can use these as learning tools and motivation and whether whatever journey that you might be.Experiencing right now.

[00:02:00] So I hope you've fit into my shoes for this podcast. You learn and you gain a little insight into my own into my world and understand a little deeper of why I really am excited about empowear audiology as a podcast. So I truly believe that all of us was created, but a purpose on this earth.

[00:02:25] I believe that honestly, I was born with a hearing loss for a very good reason, and it led me to the field of audiology so that I would be able to share professional expertise intertwined with all of the personal experiences. So, this was really was not an accident. It was purposely created for me, but I have a long journey of how I came [00:03:00] to accept my hearing loss and be okay with who I am.

[00:03:05] I love this quote from Rick Warren. He wrote the book purpose driven life in 2002. And he says that character is both developed and revealed by test and all of life is a test. So I ask all of you as listeners. What are the tests that you are faced with in your own life? I really challenge each of you to reflect back on your own life test and see how they challenge your own character as a human living on them.

[00:03:40] So to start with this podcast and my life's journey, I think the only way to start this is just where I came from. And that was my parents, Mike and Pa.  And Mike and Pat, they met at Kent state university in the late [00:04:00] sixties. They were both in education. They happily married and they both started off working as teachers and they decided to build a home.

[00:04:10] And a few years later they would decide it was time to start a family. So the first born was actually due on December 25th, Merry Christmas. And, Mike. Dad was a dedicated wrestler and dedicated coach. So, four days before due date and December 21st, , Mike was that a big wrestling tournament and, and that particular day, their firstborn decided that it was time to enter it into the world.

[00:04:47] So I can only imagine what Pat was feeling, that frustration before cell phones were. I imagine trying to get a hold of the [00:05:00] Mike at a school on a Saturday to say, get to the hospital. You are about to have a baby. So, and December 21st, Carrie Lynn entered the world. However, not without causing anxiety.

[00:05:17] So the placenta had broken away too soon. Lack of oxygen and emergency caesarean was necessary. Apgar scores were low and it was just a big scare for anyone, especially new parents. The doctors later caution my parents about the side effects of lack of oxygen, mainly mental and developmental delays. But there was really no way to tell the extent of the damage right away.

[00:05:51] And hearing loss was not one of those side effects that was mentioned to my parents. So at each pediatrician [00:06:00] appointment questions were asked by the doctor about feeding and sleeping , and crawling and walking and speech and language development and just overall health in general. And overall, I was meeting quite a few of these important milestone, but I was definitely not meeting the speech milestone because I was doing so many of the other milestones.

[00:06:24] It was the assumption of many doctors that everything was okay. That hearing all or hearing nothing philosophy was really believed at that point in time. However, my mom had a gut feeling from the beginning that there was something quite not right with my hearing. And that gut feeling actually began in the hospital and she remembers the phone ringing.

[00:06:52] And at that time it was a corded phone with a rotary dial and it had a very [00:07:00] loud ring and she remembers the phone ringing and me not startling. And that's where that first gut feeling about my hearing developed and at each pediatrician visit, she would inquire and express her concern about hearing and speech development.

[00:07:21] And the doctors would do what we call as audiologist, a paper crinkle test, or the clap test. And I would turn my head. And the doctors would say, Oh, you're over protective parents. Oh, your child's a late bloomer. And so as parents, when you have several different pediatric pediatrician telling you that you begin to think, Oh, maybe they're right.

[00:07:54] And of course, as a parent, you don't want anything to be wrong with your perfect child. [00:08:00] So why would you not want to believe them? Let’s fast forward, four years this happy go lucky child named Carrie was developing great with fine and gross motor skills. She was always smiling. She slept extremely well.

[00:08:20] And. She was actually surprisingly social. However, there was one major concern. No one could quite understand what she was saying. So at that point in time, my mom had enrolled me into a story hour at the public library. And when the kids enjoyed the story time, the parents had an adult parenting education hour.

[00:08:46] During this one particular story time, a speech language pathologist was talking about speech and language milestones, and she was [00:09:00] just going over those different mile milestones and different red flags started to go off inmy mom's head and afterward she spoke with the speech language pathologist and the speech language pathologist said, well, if you, if you have concerns and rightfully so at the age of four, you really need to have her hearing tested.

[00:09:26] And my mom has said, well, I've taken her to the doctor and the speech pathologist luckily expanded on what a hearing test was. And my mom went home that day and searched the phone book and actually the local health department to find out where to take me. So at my first appointment for a hearing test, I, at this point in time, I was four years old.

[00:09:53] So being able to do a conditioned play task, or I raised my hand. [00:10:00] I was able to understand that. And what did you, what did the audiologist find out? She found out that I had a mild sloping, profound, bilateral hearing loss in both ears. So as a child at the age of four, I do remember getting fit with my first pair of hearing aids.

[00:10:22] And I remember getting the earmolds made. And at that point in time, it was a liquid and powder mix that the audiologist would mix together and form that pink material and they squirted it into my ears. And I remember the audiologist talking to my parents and I had this pink stuff in my ears mold impression material. [00:10:48] And I could just remember that I was moving back and forth. And then I remember going back a few weeks later and being fitted for the first time with my hearing aids. And while going [00:11:00] down the hallway and hearing my footsteps for the first time. So that was really as a four year old, an exciting day, for me as anything new and different and being the center of attention would be for any boy.

[00:11:15] Little did I know about the experiences that my parents had and the other side of the fence. They were So good at pretending that everything was normal and that this was just the normal part of a four year old life. And I do appreciate that because they had the highest expectation for me. But on the flip side, I am I guess, uh, kind of sad that they did not have anyone else along their parenting journey that they could talk to and really know that they weren't alone in this [00:12:00] process.

[00:12:00] Fast forward, just a little bit. And, I'm kind of getting ahead of myself, but I wanted to share a little bit of this, so that you have a background, but a few years ago, as an audiologist, now I had the opportunity to just share my personal journey and really this wasn't something that my mom and I talked about a lot, or that family talked about a lot.

[00:12:26] And so I wanted to know from my mom. What was she feeling along this parenting journey? Because I'd never really thought to ask about it. We just kind of went through life as any family kind of does every day. You know, you get through the day and we'll get busy and you just do your best to raise kids.

[00:12:52] So because I was doing this presentation, I decided that I would Ask my mom to write down some of the feelings that she had. And so I thought I would use the  grief cycle, which some of you might know was originally defined to explain the emotion that someone goes through when they lose a loved one.

[00:13:15] But the models also applies to a loss of a job, a divorce or other life altering events. So the cycle includes denial and anger. And bargaining and depression and acceptance. And so I'll share later on how, even though that this model actually fits a lot of what I felt growing up with hearing loss and think all of us go through different levels of emotions [00:13:46] and own life when we go through difficult times or we lose someone or we're going through a diagnosis that we don't know about where any kind of event, but I wanted my [00:14:00] mom to really think about these different stages and see if that model fit her journey as a parent. So back to my mom, I had written down those different key points of the Kubler Ross model.

[00:14:18] And she said, let me think about it and I will get back. So she have the chance to think about it? She just started writing down everything that she felt.  Honestly had about 10 pages that she wrote down about that. And it just was shows how important it is to be connected with others who are in the shoes and had the chance to share what your feelings are.

[00:14:51]. At some point, I want to have my parents on this podcast so they can share their own feelings. But I wanted to [00:15:00] summarize just a little bit about my mom's feelings through the parenting process so that you can get a better understanding of the importance of empowear audiology. Empowering those that we work with and that we see on a daily basis and the parents and the kids and the consumers and ourselves as professionals, we need to be empowered.

[00:15:29] So the first cycle it's denial and my mom wrote that for that denial it's part of the cycle. Felt that she ignored her gut feeling. She knew that there wasn't something right. And she allowed doctors to convince her that their perfect newborn was well. And so that was kind of [00:16:00] that denial part of the cycle that she really felt dealing with.

[00:16:07] With the hearing and the hearing loss and the next part of the cycle is anger, the anger or the first reaction, really, when she found out, she thought to herself, you know what, we did everything right. And you want your child experience to be perfect. She thought like, Oh, all of my other friends, I have perfect first child experience[00:16:37] Why didn't we? And they just really, as parents felt inadequate to do with a child with a hearing loss because they didn't, they knew nothing about it. So what are you supposed to do? They thought  for themselves and that really manifested into anger, [00:17:00] and that part of their cycle of that grief cycle.

[00:17:04] So the next section or the next part of that grief cycle is bargaining and she felt like she could say, “You know, we work really hard. Yeah. If we go to therapy all the time. If we put all of our effort into this, the hearing loss and the issues go along with it, will go away? So kind of like that, dear God bargaining.

[00:17:40] If we do this, will you make this all better? And then the next part of that cycle is depression. So my mom reports feeling powerless and overwhelmed and frustrated and guilty at times when I was challenged. So I'm feeling [00:18:00] alone and not having that support. And they didn't know anybody else at that point in time who was going through this type of an experience.

[00:18:09] And then the last part of that cycle. Is accepted. And, she really talks about realizing that, Hey, hearing AIDS and therapy are not a quick fix. And coming to terms that every new experience, whether it's a cap or a sport or swimming would always involve some kind of unique modifications or accommodations for me.

[00:18:40] So my mom also talks about the cycles and that you don't, you can skip cycles, you can cycle through several different times and she reports and, and really shares that she cycled through these stages [00:19:00] several times throughout my life. And what I think. Is really, I'm trying to think of the word, that last part of acceptance or that the most powerful part of acceptance is that she really could accept my hearing loss when I was okay in my own skin.

[00:19:29] So, she's felt like she cycled through the stages of grief. Until I truly accepted my hearing loss, which for me, I would say I didn't truly accept my hearing loss until I decided to go into the field of audiology. I just want to say that I am thankful that God chose Mike and Pat as my own parents, because they truly [00:20:00] loved [00:20:00] and they supported, they encouraged, and cared for me and, and the greatest way possible. So, I just want to say that I would not be who I am today without they're continuing support. And even today I, depend on their support to get me, through different stages of my, of my own life, going through parenting and everything else that we all go through on a daily basis.

[00:20:36] But. Again, I kind of want to reflect back on that quote that Rick Warren and his book, the purpose driven life says, and he say that character is both developed and revealed by test and all of life is a test that I certainly put my parents through a challenging life test. So I'm going to kind of switch gears a little bit, [00:21:00] and I want to share just a little bit about my own personal experiences of growing up.

[00:21:06] With hearing loss and just give you just a peek into my authentic look of my own life.  I think you will see that the grief cycle, that I really did take baby steps to be. Becoming competent and to becoming an advocate and I think you will see this through different podcast. When I talk about different topics that my emotions that time might have seemed like gasoline and they were dangerous and destructive and not other times in that cycle [00:21:47] I carried myself with much confidence and acceptance. So I do love quotes. And so you're going to hear different quotes and different podcasts depending on what the topic [00:22:00] is. And I love Helen Keller's quotes. And one of her quotes about character is, she said my character continues to develop through trial and suffering the soul strengthened and success achieved.

[00:22:18] I love keeping that quote at the forefront, because sometimes we have the fall and we have to fall hard in order to be, to, to go up and to be strengthened. And to know that success is ahead of us. So to give everybody a little framework about my early education years, I basically wasn't as you know, identified until age four.

[00:22:45] And by the time I got my hearing aids, everything set up and in the therapy, I was ready to start kindergarten and my school district. [00:23:00] hadn't had a lot of experience of dealing with a child with hearing loss. So. My mom signed me up for kindergarten and we decided to see, let's see how she goes, uh, how she does and at that point in time.

[00:23:17] So any of you who work in the schools and know how involved IEPs are, they can be 20, 30, 40 pages long when I was. Going to elementary school and middle school. I had a one page IEP. So at that point in time, really I was on an IEP for speech sounds. So I think I was working on every single speech sound there is to work on because no one could understand what I was saying.

[00:23:53] So that was the basic of my IEP at that [00:24:00] point in time. So another thing that growing up through school and going to public school is that I didn't have an educational audiologist or a teacher of the deaf on my team. So. My teachers didn't really understand a lot about my hearing and my hearing loss and different accommodations that needed to happen in my classroom.

[00:24:33] And on the flip side, I didn't know a lot about my own hearing loss and how to advocate for myself. So there was a lot of times going through school that I probably got out or didn't understand something. Right. And we [00:25:00] didn't really look at the foundation of why that was happening. So I could remember back in fourth grade and I was. [00:25:15] tall so I was seated  in the back of the room, so I wouldn't block anybody else. I'm sitting in front of me. And I remember the teacher walking around the room, while  giving spelling tests. And I had the hardest time with that because I really relied on being able to see someone's face when they were talking, but I really didn't know how to express myself that way.

[00:25:52] So instead of raising my hand and asking for a repetition, I decided that I would just [00:26:00] glance over at the. Kid sitting next to me to see what that spelling word was that I missed. And I wasn't cheating. I just didn't hear the word, but the kid is sitting next to me immediately raised his hand and called on the teacher and said that I was cheating.

[00:26:26] So I actually got sent down to the principal's office for cheating on a spelling test. And I just remember being devastated and, and really not knowing how to explain it, but I felt like I was the person to blame. So that was just one of those reflections of going through elementary school and not knowing enough about why I had to wear hearing [00:27:00] aids and what my hearing challenges were in order to advocate for my own self.

[00:27:04] So, as a professional, these early self-advocacy or early challenges or barriers that I had  really gave me an opportunity now as an educational audiologist to reflect down some of these difficult situations. And, I didn't realize that others didn't hear like me. I just assumed that we were all in the same boat and there are so many tools and guides out there right now to help professionals with this topic [00:27:41] directly to help our kids directly and also to share with families. So,I think even though these were tough challenges for me and that hearing technology, wasn't that great [00:28:00] at that point in time as it is today. All of those exceptions now give me insight to working with families and with the students every single day.

[00:28:15] So I really, what, who encourage, whether you are, consumer with hearing loss, whether are a student with hearing loss, whether you're a parent who has a child with hearing loss. So, or a professional who works with individuals with hearing loss, building self esteem and competence and knowledge advocacy is really [00:28:41] Important to do. So let's go circle back around and I'm going to fast forward through a few, more years to the middle school years. And I'm sure all of you guys can think back to middle school or junior high and [00:29:00] have some unpleasant memories of those years, because it's just a tough time, no matter who you are.  [00:29:10] For me, I felt like it was even more amplified due to having braces and horrible hair and wearing hearing aids and having an accent, which is my deaf speech and having trouble, especially in crowds and social gathering, keeping up with everyone. So this is probably the first time that I've felt like I entered into [00:29:53] what we call the Kubler Ross grief cycle for the first time. So, so like I said, we'd [00:30:00] come together as a group of middle school, adolescents, and you just really want to be part of the group but I always, at that point in time  like I was floating around on the outside because communication and connecting was really difficult for me.

[00:30:22] So I went through this very strong period of anger and bargaining and depression during that part of my life. I wanted to bargain with the God.  You know, if I do really good on my test, my hearing aid, I won't need them anymore  and you know. I will be a good person for the rest of my life [00:30:50]  if I don't need to wear my hearing aid anymore. It was just really difficult as [00:31:00] a middle schooler who  has a disability and being the one and only.  That was one of those difficult years. You didn't really want to talk to your parents about it cause you didn't want them to worry. And I didn't really have any friends I could talk to about it because they all had normal hearing and really wouldn't understand what I was going through.

[00:31:29] So it's just one of those cycles, that grief cycle that was really difficult at times. So as an educational audiologist today, I'm able to reflect back on those feelings. I realize like there's actually research and data behind what I was feeling and you know, communication and communication barriers [00:32:00] are universal among all people who have hearing challenges.

[00:32:06] And a child or a student with hearing loss is going to have difficulty interacting in a spontaneous way when in a cafeteria or a gym. And all of it was different social situations. So there was kind of these other host of secondary problems that can arise when you're feeling on the outskirts.

[00:32:37] So even though it was really difficult in that time, now that I am in the field, I feel like I can really reflect back on that difficult time and create it for good. So do you do a podcast? I can't wait to share with you about the [00:33:00] importance of peer connections and peer mentorship, because it really, as a professional, my experiences growing up and during my middle school years really was a driving force for what I am passionate about.

[00:33:19] Today let's fast forward a few more years to my high school years. I would say high school I felt a little more confident in who I was. We got through that awkward tween, early teen years. The boys are starting to get a little bit taller than the girls and my hair was a little bit better. I got my braces off, so I was feeling a little bit more confident about myself.

[00:33:49] I was part of the volleyball team. I was part of the basketball team. I had a built in network group of friends who honestly, [00:34:00] these strong friendships have continued until today. So I'm,  friends with a lot of my high school friends today, which is great to look back on and be able to share all of those great memories with, but I still would say that during high school, I was not a hundred percent comfortable in my shoes as a teenager wearing hearing aids.

[00:34:24] I still, at this point in my life had never met anyone else with hearing loss or who were hearing aids. When I was a senior and getting ready to go to prom, I was still so self conscious about wearing my hearing aids and I didn't want others to see them, even though they knew I wore them. For prom, the [00:34:53] popular hairdo was called an updo. So your hearing aids, would show [00:35:00] if you had your hair in this hairstyle. And I remember my mom and I getting in an argument about whether or not I was going to be wearing my hearing aids to prom.  I won that argument and I did not wear my hearing aids to prom. And I know that I did not have the greatest time because I couldn't hear but my hair looked really nice.   I was just really self-conscious [00:35:42] phase of my life, where I was not comfortable in my own skin with wearing hearing aids  and that transferred all the way through high school as an educational audiologist and [00:36:00] professional. Now I'm really shameful and embarrassed to say this, but I, it took me a long time to get to acceptance of who I was with a hearing loss.

[00:36:17] So let's fast forward a few more years. Let's fast forward a couple more years to college. I had no idea what I wanted to go into. When I first applied to college, I knew that I liked people. I knew I wanted to be in a helping profession. So it was actually my clinical audiologist at the time who asked me [00:36:45] Hey, what are you thinking about going into when I was going for just a yearly checkup and I had answered, I wasn't really sure, but I had been accepted to bowling green state [00:37:00] university in Ohio, and I was going in undecided in health professions. And so she went on to say, have you ever thought about audiology as a profession?

[00:37:13] And honestly that thought had never really crossed my mind, but my thoughts started turning just a little bit at that appointment. So to make a long story short, this was a major pivot point in my life and led me into the field of audiology. So in future podcast, I am excited to be able to thread in some of these tidbits that I shared with you today, and my personal experiences into the interviews with professionals and others who have a personal journey with audiology, with hearing [00:38:00] challenges with this walks, these types of walks of life.

[00:38:06] So I'm going to just wrap up now. And I am going to circle back over to Rick Warren's quote from the purpose driven life. That character is both developed and revealed by test and all of life is a test. So I know I have had a lot of tests in my life to get to the place where I am and to have found acceptance. To be able to live well with my hearing loss.

[00:38:35] I still today. And as you will see in future podcasts, I go through ups and downs. So if I face new situations, new challenges, this is why I am so excited to bring to you empower ear audiology as a podcast. So as a passionate audiologist with a personal journey, I [00:39:00] cannot wait to share more with all of you [00:39:03] and have conversations with experts who are personally and professionally invested in the world of hearing and hearing loss and hearing challenges. So again, subscribe today and I can't wait to bring more podcasts to each and every one of you. If you have a comment or a suggestion or want to hear about something, please reach out to me.

[00:39:33] And I can't wait to hear what your feedback is. Thank you. This has been a production of the  3C digital media network. [00:40:00]

Episode 2: EmpowEAR Audiology - Dr. Cheryl DeConde Johnson

[00:00:00] Welcome to episode two of EmpowEAR Audiology with Dr. Carrie Spangler.

[00:00:16] Hi, welcome for the EmpowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host for this podcast. And today we have a guest on our podcast today, Dr. Cheryl DeConde Johnson, and I'm really excited to have her today as we are going to be talking a lot about the pandemic and educational audiology and how students with hearing challenges are going to be.

[00:00:43] Going back to school or learning remotely or learning from a hybrid approach. So there's a lot of different that are going to be coming forth this school year. So before we get started about talking [00:01:00] about the unknown and uncharted territory, would you just take a second to introduce yourself and your background and 

[00:01:10] where you came from and how you are, and  where you’re at today? Well, where I came from was Anchorage, Alaska. No, just kidding. That's where I was born and the air force base anyway. Um, yes, this is great to have a chance to chat about the coming. Um, I don't know what to say beyond chaos, but, um, just an unknown. But anyway, my background is varied and starting off as a parent and then in communication disorders, educational audiology, deaf education administration.

[00:01:48] And, so I sorta just view myself as an advocate and like Carrie and just very passionate about knowing we can do a better job [00:02:00] and we just keep persisting. I used to call it when I worked in the schools, gentle harassment in that you just keep prodding the person, the, the issue, the school, the whatever in a nice way, but not.

[00:02:16] Not backing down because, um, you know, we have a role in advocacy and we want our kids to take that role on as they get older, really the younger, the better, but, um, there's just a lot of people that misunderstand and we still have a lot of work to, they do. And we all know that. Having rigid steering, hearing status.

[00:02:38] It's not the same as others. Shouldn't really packed what, what you're able to do when you grow up. So anyway, I have a grown daughter. Too. That's been kind of my, my impetus and continues to, um, guide and stimulate me with her own issues around access in, in [00:03:00] employment. And certainly now under COVID that unique situations that arise with trying to make sure she has access to the students she works with in a, at a college.

[00:03:11] And can you tell me a little bit more about your role with hands and voices as well? You said, as you said, you're a parent and an advocate that way. And I think that's kind of how you got started with hands and voices. That's true. Um, probably back around 1990, um, when I was working at the Colorado department of education and with other parents, um, being a parent, I was always.

[00:03:39] Concerned and ensured that there were parents involved in whatever we were doing. And, um, you know, we've just got together a couple of parents and we're thinking, you know, we need to have more of an organized parent voice and started at that time was called the hearing impaired family support network in 1990.

[00:03:59] [00:04:00] And, um, it evolved, um, and we now have hands and voices in Colorado. Right? Take, we changed the name maybe around 1999. Yeah. I can't remember exactly when that happened and continued our work. Um, we were fortunate to get funding through the health department and the department of education. Both of whom believed a role of the parent was very important and did activities for parents and.

[00:04:27] Yeah, we just had great response all the way around. And eventually other States learned about the work and we started to grow and grow and grow and hands and voices is, um, a really strong voice for parents. And what it's intent is that has remained is two things. One it's. Primarily parents. So it's a parent driven organization and it's not about modality.

[00:04:55] It is about getting, let families think they, their children need [00:05:00] to be successful. So when you take away the modality issue, parents are all on the same page. As they are as professionals, they all want the best for our kids, whatever path it takes to get them there. We want it, but the advocacy becomes a big part of it, but because we're still.

[00:05:19] Building awareness and making sure that that path is smooth enough for kids to be successful in and what a great organization for a time, like now when there's so much uncharted territory and. Hesitancy and in decisiveness about how we're going back and how do we support each other and learning from each other.

[00:05:42] And parents definitely need that kind of support right now, what to do and what ideas and creativity can we have in this moment. So. And I just wanted to take a second to just share a little bit about how [00:06:00] I remember meeting you. And that was a long time ago, I think, at a Phonak brainstorming event when we were.

[00:06:11] Going to do the gap program guide to access planning. And we didn't have a name at that time, but they had brought some different people together. And I won't forget that. I remember knowing your name out there as like the. Person who was the educational audiologist. And I just aspired to be an educational audiologist like you and I, but your handbook at a conference when I was still a student, I'm glad to score and to, um, Be able to meet you.

[00:06:45] I was so excited and then it has been such a great relationship. And you have been an incredible mentor for me throughout. I think it's been almost 20 years. Oh my gosh. [00:07:00] Now that we've known each other and I know you have become my great roommate for conferences. So it's, um, I really appreciate our relationship, um, both personally and professionally.

[00:07:12] So we have a lot in common in different ways. That is very true. And I'm all I'm doing is getting you ready to take care of me in my old age. Wow. Kumbaya relationship. Oh, well I think. You know, the big topic, obviously from a national perspective is how was schools opening up? So there's so many decisions that have to be made by amended administrative perspective all the way down to.

[00:07:53] All all aspects of education and from health and safety to education and [00:08:00] accessibility. And I think that's where I really would like this conversation to go. The guy was, you know, what did we learn from. When we shut down and merge and how did we, you know, what kind of things really popped up because of the shutdown and students who are deaf and hard of hearing.

[00:08:20] And then maybe once we talk a little bit about that, we can talk about what are some challenges we might see opening schools back up again. So, do you have anything about what you learned when we shut down for remote learning and different things that really popped up? Um, actually I think there, we learned a lot, some of it even positive.

[00:08:44] I think the difficulty was how unprepared schools were to go to remote learning. Um, and I have taught at the graduate level remotely for 20 years. So I'm [00:09:00] used to teaching online and I understand a lot of the nuances of teaching online, but when you're a classroom teacher and you're used to having in a classroom and suddenly you're thrust into an online situation, lessons are different.

[00:09:14] You're you have to be much more structured. Many teachers are able to what I say wing it. They don't have, you know, extensive lesson plans. Because they're just natural teachers, but when you change the environment, what used to come to you naturally now doesn't and you've got just in general students that have little support at home.

[00:09:38] You know, there's two sides of this. Really? The children need to be supported to be ready to learn in the home environment. Just like we get. In a classroom, you get your kids ready to learn. At the beginning of the day, who's going to do that at home. Sometimes there is somebody home. And actually when we first went to remote learning, many parents themselves were either working from home or where they worked was closed [00:10:00] down temporarily.

[00:10:00] So there were parents at home. Um, but then also the teachers had to get ready to, how do they. Um, structure lessons online. So yeah, I think there's huge variability in how it was conducted. I think teachers had little direction in what to do. Principals just said, figure something out and there's all, you know, there's some families that never connected to online learning in their schools and there's others who did, um, There were teachers who were contracted to school districts rather than being employees of school districts who couldn't get access to Google classroom or whatever format, because it all went through their district email.

[00:10:45] And I remember a teacher telling me the deaf ed teacher telling me the classroom teacher says, Oh, you just work on the IEP goals. They don't have anything to do with what we're teaching in class, which is 180 degrees from what our teachers [00:11:00] of the deaf know that what they're doing supports everyday learning, but they need to know how their instruction is going in the classroom to support that.

[00:11:09] So it, it showed the inequities. Are they inadequacies maybe if some of our communication and at the same time, um, maybe open some doors. I think parents came much more appreciative when I talked to early intervention providers, parents really had to do the intervention to now. So it wasn't the intervention coming from interventionists coming in the home and just modeling, which, you know, we typically would model and then have the parents.

[00:11:41] Do the same activities, but now the, there was not a lot of ways to model. So you had to really be able to instruct parents, coach them much more coaching. So that was, you know, some of the good things I was talking to the teacher of the deaf in a state who still has a self [00:12:00] contained classroom. And she said for the first time she felt like she had the time to have.

[00:12:07] The discussions that prep, the vocabulary, all of those things with her students, because she had the whole classroom without interruption. Whereas before, when she was teaching in the same classroom, kids were still coming in and out to go to various specials or whatever. She thought that the kids got….

[00:12:26] much more instruction because she had much more time to devote to a lesson, and still do individualization with her kids. So yeah, all kinds of things were learned and I'm hoping that when classes go back in the fall, teachers have had a lot, yeah. Have time to think about what worked and what didn't work and at school administrators to think about that so that, you know, we're past that sort of trial and errors stage and more into, okay, this is what worked, let's expand on that.

[00:12:56] And that the schools are putting more structure [00:13:00] into the online learning. Yeah. And I think when we shut down, we were kind of all thinking and two weeks or a month would open back up again and it would be back to normal. So that was, I think another, I guess, um, hurdle in all of this where teachers are like, well, I'm going to get through this little bit of online learning and then we'll be back in the classroom.

[00:13:26] And that. Didn't happen. And I don't know if that's going to happen in the fall as well. So, uh, with your, I guess, more national perspective and working with different States, what have you heard from different States about opening back up or their experiences with remote learning? Um, I think technology is, is definitely a huge challenge deciding which kids needed at [00:14:00] home, which kids wanted at home.

[00:14:02] Um, how do we. Demonstrate to parents that, um, demonstrate to parents that their, um, children may benefit and could even understand better, you know, getting into this hearing versus, um, audibility versus intelligibility. Um, sometimes I think kids themselves think, Oh, I'm doing good enough. Or parents feel like, you know, they're doing they're hearing well enough.

[00:14:28] Um, so. I don't know what's going to happen. I feel for teachers, um, I feel for all the parents who have to work and how their children are going to be supported to learn at home. Young children need structure, I believe. And they need the discussion that relates different concepts to everyday practice and to experience and how you take online learning and push, integrate [00:15:00] experience with it so that it becomes more meaningful.

[00:15:03] Um, Teachers last spring who were managing their own children's online learning and teaching their students being on call almost 24 hours a day because suddenly they, their students could contact them. Um, it was totally different in it. I don't know what the fall is going to look like. They, you know, well, there's totally in the classroom, totally online, a hybrid.

[00:15:29] I think there's going to be a lot of hybrids because of physical distancing and the other things. Um, obviously the, the mask issue is a huge concern for accessibility for teachers and kids and how that's going to be dealt with. In the schools, you know, as we've taught shields seemed to be such a great solution, but yet there's reticence because of the fear that they're not going to be sufficient to, um, keep people safe from, from droplets.

[00:15:59] Um, [00:16:00] uh, here there's less emphasis on. Getting COVID from contact that yet, as I was saying in an earlier conversation, I had today with a very talking about classroom acoustics in a very bare classroom teacher commented below that's what costumes are going to look like when we go back in the fall, they're going to remove all the materials in the books and the things that made the classroom so alive.

[00:16:27] Aren't going to be there. So then you begin to wonder why kids are coming back. They're coming back to a shell of their education. Obviously they have peers and relationships, but I don't think we know that this is yet another stage in trying to bandaid in the spring, just to get something, going to support our children, to trying maybe some different things, but without.

[00:16:52] Sufficient direction. Um, I know there's teachers that are turning their basements into studios so that they can have a place that's quiet, that they can [00:17:00] teach and have all their materials and have a chalkboard or a Blackboard or something where they can illustrate and demonstrate. So I don't know. Yeah.

[00:17:09] I mean, teachers are amazing and the creativity and the way to. Fine solution because they do want what's best for the kids that they owed teaching. And that's why they got into teaching to begin with. Um, but I, I like to go back to some of these points that you brought up about the mask and the acoustics and physical distancing and listening to peers.

[00:17:34] And I know we have had some conversations and just a more personal level. And I've shared with you, just my own personal experiences of being out in the community and being cut off from communication. And I always viewed myself as someone that could overcome a lot of my human challenges with [00:18:00] my cochlear implant and hearing AIDS and getting closer to someone and watching you and, and using these different coping strategies and.

[00:18:10] And I think you have shared too, your daughter kind of has gone to some of the same similar experiences I have. All of a sudden we have mascot and the community, which we know is very important for everybody's health and safety and slowing the disease or coronavirus down, but it really presents with.

[00:18:33] For us, for those who are working with individuals who are deaf and hard of hearing with the balance between what is your right for communication with ADA and Ida and five Oh four and what we're dealing with with a pandemic that none of us have ever had to deal with before. So I guess that's. [00:19:00] Kind of where I wanted a conversation to go next with reopening of school, then knowing what the challenges will be for students with hearing loss, what are some things that maybe we can brainstorm that might be helpful in a trial and error way, knowing that what we know today might not be what we know tomorrow.

[00:19:23] Have you thought about that? Yes, but it's like, everything is complicated. We, I think people are learning how much visual access impacts communication. And it's not just kids who are deaf and hard of hearing kids with autism, with young kids, with other learning problems. They. Learn by the facial expression and the tone of the person speaking.

[00:19:53] They may not totally understand the words, but they get information from seeing the face. So it's not just [00:20:00] our deaf and hard of hearing children. It's a lot of young children and the dilemma is how to provide access. Within the constraints we have of the appropriate masking, shielding protection, whatever it's going to be and where it, like you said, where's the balance?

[00:20:21] What do we, what can we give up to find that balance? And I think we need to learn from the children themselves to some degree and. They, you know, have these conversations so that they really understand what COVID is, why we're doing this, what the risks are, um, how they learn and recognize that. Learning might be more challenging, but what, what could happen that would help if, if there's more pre-teaching, if there's a combination of online where you aren't close and you can, you know, like we are talking [00:21:00] now, even in a school building, this could happen and then kids could come together.

[00:21:05] Um, so I think children might have some answers for us. That maybe we haven't considered, and they may have some ideas for us that we haven't thought about. And I think having them be part of the solution will help them understand just in life in general, it's a give and take. You don't always get your way.

[00:21:25] It's not always perfect, but in resiliency, you figure out a way. To work through that. And I think that could be an important lesson if it's handled right way that kids really have the opportunity need to discuss why this is why we're here, why we're doing this, what are the challenges? You know, I mentioned earlier, that'll Mo my mapping activity for some, some teens might be really fun and see what they come up with.

[00:21:54] Um, and maybe you can even do that kind of an activity online with a group of students. One of [00:22:00] the. Challenges for our deaf and hard of hearing students is that online learning has been very isolating. And I think one of the other things to consider is how we can bring even in a school district. If kids are in different schools, is there a way we can bring them together on a regular basis so that they can have a cohort, a group of peers that they, um, have an activity that they do within can look forward to meeting maybe weekly.

[00:22:27] So maybe there's more. Um, need and opportunity online because we don't have to take you out of school. We don't have to drive them somewhere, but there is more opportunity to try and do more grouping of kids. Um, there's yeah. It's. It's hard. I think, um, we don't have a lot of answers and it's going to be still learning as you go.

[00:22:53] But I think there are some suggestions that, um, you know, we can talk about, um, [00:23:00] using, um, remote mic systems is absolutely critical if they're going to be in class and going to have a mask, we know that the masks muffled speech. If they have a mask, they really should have window masks of some kind so that they have some access to the face.

[00:23:16] Still believe shields is one way to go. Um, But at least by using remote mic, then the, and the thing that gets to the student. And especially when you talk about physical distancing, you know, I was talking to my daughter about how she was going to arrange some of her counseling at the college level, and she was going to do things outside so they could physically distance.

[00:23:39] Well, once you put somebody six feet away and they have a mask on, even if it's a clear mask, It's really hard to hear what they say. So you've just added now yet another variable by wanting to be outside. So it's really kind of really looking at the situation and we can look at this set [00:24:00] framework under UDL universal design for learning, which looks at the student themselves and what they need, the environment that they're going to be in.

[00:24:09] The tasks that occur and then what tools are necessary in order to be accommodated in that situation. And maybe just a simple format like that with students to have involved them in this sort of analysis, and then help them come up with some solutions that might, um, might work for them. And if they don't work, they've tried it and they'll try something else.

[00:24:32] So that way it can be a really good learning experience. Yeah, no, I really like that. Process. And we always talk about wanting kids to be their best self advocates buckets. And I think this is an opportunity for us as educators is related service personnel who are working with deaf and hard of hearing to really.

[00:24:56] Focus in on the self advocacy skills, because [00:25:00] with everything that's going on, I feel this population is early hit hard. Uh, and we don't really talk about that because we are, you know, this population is a smaller population, but I, I know there's a lot of. Tips for adults. Um, what you can do when your communication is compromised, but all of these steps aren't necessarily going to help our younger kids.

[00:25:28] So if you're not at a literate reading level yet, you're not going to benefit from the suggestion that CDC has said with captioning, we're writing things down. And so how do we kind of come to what you said, like meet in the middle. Um, with some of the safety and then the accommodation piece of all of this too.

[00:25:52] So, and then you did mention something about isolation too. Have you. Thought [00:26:00] about when they go back to school again, that physical distancing and mask. If, if students are going to be required to wear a mask, and I know I've heard different things, they might have mask breaks depending on. Where they're at, but at that point, they're going to be further apart from each other.

[00:26:20] So, uh, and our lunchtime, that's going to be looking a lot different too, but I think so much of a bowing to school. And the reason we want kids to go back to school is because we want them to be in community with each other and they learn better that way. So how do we make sure that they're included that way?

[00:26:44] You know, I was watching a group of students, um, in a summer recreation program and in the town where I am. And, um, as part of the program, they've included COVID education. And these were kids [00:27:00] probably from age five to 12, every single one wore a mask. And I began, you know, it occurs to me that. Do you want to be like everybody else?

[00:27:12] So if everybody's wearing a mask, you don't want to be the only one, not wearing a mask. So I don't think getting kids to wear a mask is going to be a problem. But I do think it is important to have times when they can remove the mask. And obviously eating will be one of them. Um, cause I think they need to learn what these.

[00:27:32] Covert accommodations are just in general, but I think kids are more resilient than we think. And, um, and I, I know there's social, the social pressure to be like, everybody else is great. And if it's just the role, you know, we've heard that, you know, well, you have to wear seatbelts. So we all wear our seatbelts.

[00:27:55] Um, and this is just the rule that we have for right now. And this is why, so. [00:28:00] I don't think the problem is going to be getting kids to wear masks. The problem is going to be communicating with the masks on, and I know of school districts where they have ordered clear masks for the entire elementary school population, because it's a school, that's a center based program for deaf and hard of hearing students at the elementary level.

[00:28:20] So, you know, I don't remember how many kids, 20, 25 kids they have, but spread out across grades. But, um, Yeah, that's just what the school decided they were going, going to do to honor communication access. But my, you know, not every school's there, it took some advocacy on the part of the teachers to make that, um, need known and they acted last spring so that they have the materials ready to go.

[00:28:48] When school opens in the fall, um, Yeah, there are shortages. So, you know, the ability to get things at the snap of a finger is just not going to be there. So, [00:29:00] um, the, the cleaning of the mask, cause I mean, there are kids that have other physical, um, Differences, um, with feeding and things like that. I mean that those severe needs kinds of kids have another set of another whole layer that is going to have to be addressed through special education.

[00:29:22] And, um, Know, they'll, it's just, then it's going to be more like, kind of the hospital situation where you're providing more care. Um, so it's different groups have, have I think different needs and are going to require different care. You know, we've heard about having kind of an isolation room at the school.

[00:29:41] So if a child comes to school and get sick, they have a place to go, you know, and these kids get sick. And if the parents are working half day home, Some somehow we're going to have to have things in place for families to have access to support services for those [00:30:00] situations. Right? Yeah. So another question I have, and I was wondering if you've talked to anyone since the hands and voices and being connected to different families, do any of the parents that you'd talked to, do they have an aid.

[00:30:19] Initial thoughts about whether they want their kids to go back to school or do they want them to do remote learning or hybrid? I mean, what are the thoughts about next steps or their choices? And when they're thinking about their own child with hearing loss, Um, I've not talked to that many specifically about going back to school, but I know that the accident issue is big.

[00:30:49] And, but I also know they realize that it's difficult decision and they, you know, want to have the, at least the clear masks. Used [00:31:00] by, you know, all kids and staff. Um, and I have heard a couple that said, you know, they've got family members with health issues and they just can't take the risk of having children back in school.

[00:31:11] And I think that's going to be true of everybody. We're going to have to have multiple options because of so many different risk issues and, you know, teachers who are at risk, what do we do when you're a teacher of the deaf. May, you know, had an autoimmune disease or something that they're compromised and, and can't be back in the classroom and there's going to be staffing issues around that.

[00:31:35] So you, you know, you don't have that many teachers of the deaf, how are you going to juggle? So I think there's a lot of decisions from both parents, from teachers, um, about how, how to make it safe to go back. Um, and so they're, you know, those are situations that. You know, families may just choose to keep their kids in remote.

[00:31:56] Education. I think some families are so fearful [00:32:00] and again, so many families have family members with some kind of health issue that they just feel safer having the kids at home, whether we'll see some sharing of kids with parents that are working and go to a friend's house, some of the part of the day for their school.

[00:32:19] I don't know. I don't know how those things will pan out, but, um, I think at time will tell when kids start going. Yeah. Back to school. If the numbers start changing and we may have to pivot really quickly in some areas where the numbers are high in other States, if the numbers are really, really low, maybe families will feel safer.

[00:32:41] About sending their kids back to school, but I think we just have to continue to be creative. Um, and, and, you know, again, that access issue is always, always paramount. Yeah. So as we kind of wrap up, I mean, we've talked a [00:33:00] lot and I think our conversation could go on and on and on, because like you said, We're going to have to have plan a, B, C, D E, depending on the pivot point that we're at and how things change or new information comes about.

[00:33:19] If we have a hot spot or if a kid goes back to school and they realize like, I, this, even with the accommodations and supports that we're able to meet in the middle with, it's still not going to work out. Can we. Go back to virtual learning. And if we go back to virtual learning, what are the supports that we need there as well?

[00:33:40] So I think there's so many different moving parts. It's really hard to overwhelming really to wrap your head around. But I would love to just from our discussion, be able to maybe at least leave with some. Five tips or something that we know [00:34:00] right now would be helpful for professionals who are working with deaf and hard of hearing parents.

[00:34:08] So even students, themselves who might be listening today, what kinds of things maybe we could give us tips, uh, for reentering or however they're going back to school. Can you think of brainstorms, some temps that we could use? I have a couple. And then we'll let you add, um, access to peers, figuring out how to remotely.

[00:34:39] Have bring kids together and create some social interactions, um, using technology and making sure there's technology support for, for families at home. When, you know, we know that, you know, if you've got three kids in your family and they're all online learning at the same time, the bandwidth issues. [00:35:00] So how do we support technology?

[00:35:04] Um, And then the other one that I keep talking about is make sure there's visual access available in good lighting and, you know, just, just give teachers some tips. And I'm sure they're learning that now as they go into online education in a more formal way, how you get ready to accommodate your students, but then also what do we tell parents to get your child ready to learn?

[00:35:28] So that. Um, when kids do come to the table to learn, it can be active. I think so having very structured individual lesson plans so that we, um, keep kids stimulated. One of the things that we heard I heard last spring is the kids were getting bored of online education and, um, that's. That's a fact that, you know, we have to deal with, especially if they're going to increase the number of hours, the kids.

[00:35:59] Have to be [00:36:00] online. So there's a couple of, what do you think? I think, um, one of the things that you mentioned earlier, the students need to be part of this solution. So I think that is another really important part that we don't want to forget about because they have a lot of good ideas and they're living it every day and what we might think.

[00:36:24] Might not really impact them or something that is impacting them. We might not have thought about. So, and I think, again, this is another opportunity for us to build up their self advocacy skills and their self determination skills. And we always talk about that, and this is a real life. Opportunity to be creative and set goals and try them out and they don't work.

[00:36:53] What else can we do to make it work and coming up with a lot of solutions that [00:37:00] way. So I think working really, again, thinking about that whole team, but making sure that student is, is the cornerstone of that team. Excellent. Yes. Yes. So they quit. I had a lot of good conversation about the pandemic and all of these unchartered waters that are coming up and I'm hoping as schools open up, maybe we can have another conversation because I think.

[00:37:34] When they do open up, we're going to have another eye opening, but what additional challenges that we haven't considered yet, and some additional solution that we haven't considered yet, and being able to come back around and talk about what worked and what didn't work and what can we try next to make sure that our students who are deaf and hard of hearing get the [00:38:00] best access that they can given.

[00:38:03] The time that we're in right now. So I forgot to mention something that I would like to say. And that is the use of classroom, audio distribution systems for all children. When we think about a teacher masked and then the distance, um, and then the teacher trying to project their voice louder for kids to be able to hear there's going to be difficulty on the student and.

[00:38:31] With his speech intelligibility and voice fatigue on the part of the teacher, who's trying to project their voice. And one of the recommendations that I'd like to see is that all this is not for deaf and hard of hearing students. This is for all kids that they have access in their classrooms to a CAD system.

[00:38:52] And obviously if there is a deaf or hard of hearing students who uses FM. It would need to be able to be compatible. [00:39:00] So you'd have to look at the manufacturer and some things like that. But anyway, I just, and especially if they're going to do more outside work, um, I think there's been a lot of talk about opening up and being outside more for classes, which is great, but that just adds another variable to the difficulty understanding what the teacher's saying.

[00:39:20] Right. And just to add onto that, if we are going to be physical distancing more, we might be setting up classrooms in a more, not acoustic environment, such as a GM or a common space that doesn't happen. You know, walls. So having a good signal to noise ratio is going to be really critical. Like you said, for all kids and our teacher, they're really going to be appreciating having that extra voice as well.

[00:39:51] So another more global tip for education. Yep. Access to auditory [00:40:00] information is really important. And I think what is it? 70% of what kids learn is through listening. So we want to make sure that they have the best access that they can when they're in that learning environment. So well, shale, I just want to say thank you for coming on today to the podcast.

[00:40:23] And I hope all of our listeners learned something or were inspired and had some different brainstorming ideas that are coming about for them as their own districts open up, because I know everybody seems to be having a different plan as they open up. And there's a lot of. Way and challenges as we do open up.

[00:40:46] So I think we just need to stay positive and be creative and be able to support one another so that when we do open up. Well all there together to [00:41:00] figure this out. And I think we do need to do part two, come a couple months from now and say, Oh my gosh, that was the worst idea there ever was. And look at, we learned, well, I going to be inviting you back for part two.

[00:41:17] As we opened back up and figured out what we learned and what we need to do, definitely. Great. Well, thank you. It's been delightful. Well, thank you. So have a great evening. This has been a production of the three C digital media network. .

Episode 3: EmpowEAR Audiology - Dr. Tina Childress

[00:00:00] Welcome to episode three of EmpowEar Audiology with Dr. Carrie Spangler.

[00:00:16] Welcome to empower you at Realogy podcast. My name is Dr. Carrie Spangler, and I am a passionate audologist, and I'm really excited to bring this podcast to you today. Today I have a great friend and colleague, on the podcast, Dr. Tina Childress, and she is going to take a second to introduce herself. So do that.

[00:00:41] Thank you for being on this. Podcast this morning, I'm excited to have you and excited to have a conversation this morning. Thanks, Carrie. It's so great to be here. So hi, everybody as Carrie mentioned, my name is Tina Childress. I live in Illinois. [00:01:00] I am also an educational audiologist. I am also a cochlear implant user.

[00:01:06] Like Carrie, our hearing histories are a bit different. I did not lose my hearing. Until I became an audiologist. So be careful out there. It might be contagious. No, I'm just kidding. Um, so I was actually, um, I had been practicing audiology for about nine months when I noticed that I had hearing loss and, um, over the next nine months I lost the rest of it due to auto immune inner ear disease.

[00:01:34] I used hearing aids. I used, you know, big boom in hearing and all the things. And then, um, decided to get my first cochlear implant in 2000. And I got my second cochlear implant in 2005 and it has definitely been a game changer. Funny, like getting into audiology. It all started, um, when I took a sign language class, so my first [00:02:00] major was actually engineering and I realized I don't like engineering.

[00:02:05] So I'm going to take a class that had nothing to do with that. And that was sign language. And then it introduced me to this field called communication disorders, which I had never heard about. Um, and in undergraduate classes, in both speech pathology and audiology, and I decided to go the audiology route and the rest is history.

[00:02:27] Um, for me learning sign language in the beginning was kind of a blessing. Um, I took that class, you know, and then introduced me to audiology. Um, I taught that class. So as a grad student, so it paid for like a year of my master's program. Um, my then boyfriend who's now my husband of 25 years took that class too.

[00:02:51] And so we've always signed with each other. And so then when I started losing my hearing, um, it was so nice to have almost kind of like this personal interpreter. Um, that came with me and, you know, to this day, you know, our family signs, I have two daughters, one is 18 and one is 13. Um, they both signed the first one is more fluent.

[00:03:15] The second one is typical. Second CODA. She’s kind of stubborn and not wanting to sign, but she can. Um, but our family has, you know, we have communication and all kinds of modalities. So, you know, Carrie and I were talking before this podcast and. You'll see a theme in my life. It's all about options. I'm not scattered, it's about options.

[00:03:38] And so I truly believe in that you need to find the right option for your situation. So for me, when my implants are off, that means signing. Um, you know, for me that means captions are on all the things in my house all the time. And you could see how that trickles down to my kids. Like, you know, when we were still [00:04:00] able to do like sleepovers and stuff like that, my kids who I like to call hard of listening, um, are the ones that telling the other kids to turn on the captioning because she's so used to that.

[00:04:11] And then all the kids are like, Hey, this is kind of cool. 

(Carrie) That's awesome. I just I've no, for this podcast too. We are trying to think about it. How you and I met. And I think it was at an EAA educational audiology association conference back in. Something nine. No, it was in New Orleans. That's right. So I think that was the first time that I had met you.

[00:04:42] And it was just so powerful to me,  that other audiologists who also have a hearing journey. So, um, one thing that I wanted to share too, because of your cochlear implant journey, [00:05:00] you inspired me to go on that journey as well. And I had been thinking about a cochlear implant for a couple of years because my hearing was

[00:05:13] getting worse. And I was having more difficulty understanding and every opportunity I had to talk to an ENT or user or a cochlear implant audiologist, I took advantage of it. And last summer, when we were in Denver, I was still on that path of making an appointment and having a consult done. And you were such a huge support to me about that cochlear implant journey and what to expect.

[00:05:47] And even I remember our little group of cochlear implant audiologists on a private message. And I'm asking questions like, what questions should I be asking when I got there? [00:06:00] And all of you were so supportive, so it's helpful to have those people to support you. And I think that really goes into our next conversation.

[00:06:13] This is pandemic, right? I mean, what, in the situation right now of reopening schools and going to virtual learning and being deaf or hard of hearing, and it's presented with a lot of challenges that. I don't, you know, that we've always had, but are amplifed  right now, so, um, Tina, do you want to talk a little bit about, um, how we kind of [00:06:43] Started collaborating about mask and face shield then. 

So, um, I talk about options, I guess I'm also a hoarder. And so I have had a conversation with another actually she's a deaf and hard of hearing, too, um, she is a [00:07:00] teacher for the deaf. And she also has bilateral cochlear implants. And so we had been talking about what we liked and what we didn't like about masks.

[00:07:09] And then, you know, when shields became an option, we were all excited because then we thought, Hey, finally, we're going to have something that provide our deaf and hard of hearing kids with visual access and keep people safe. Well, You know, long story short, we know that that kind of, um, opinion or perspective has changed a little bit.

[00:07:31] Um, so anyway, I was chatting with her and then that's when you started, you know, putting out the statement with the American cochlear implant Alliance and, you know, you have the, the position statement or the, uh, whatever the PDF that you did for the educational audiology association. And so we kind of brought you into the conversation because both the other teacher and I were really kind of trying to advocate for using more shields.

[00:08:00] [00:08:00] And then we realized that. You know, the three of us have our ideas, but we want to know what other people were also thinking. Just, you know, we were all, we were just, the three of us were in our little bubble and we wanted to see, well, what does everyone else say? So me who I am, I'm like, let's do a survey.

[00:08:20] So I created a Google form and, and, and the rest is history. So  You know, we've looked at a variety of masks that had the clear window. We've looked at a variety of shields. And, um, we had hoped we were going to get a few more responses and I think that we have gotten, um, and I understand, you know, what's the summer people are kind of probably maybe tired.

[00:08:45] I'm thinking about this, you know, I was just thinking about the fact that maybe we should keep the questionnaire open because when we do go back to school, I think there might be a surge when people realize what works and what does not work. I agree [00:09:00] with you. Yeah. And so I loved your analogy that you shared.

[00:09:06] About shoes and mask and shields. Do you want to talk about that? Yeah. So again, when it comes to options, you know, everyone has their own tolerance for what style or features of a mask or shield that they like. Some people like air loops. Some people don't like for me, I don't like air loops because I've got my.

[00:09:29] glasses. And I've got my implants and I feel like my ears small and kind of pliable. So when I put the ear loops on everything yeah. Just falls off. But some people really do like them. You know, some people like to have masks that they can put on a baseball cap. You know, I don't wear a baseball cap, so that wouldn't work for me.

[00:09:50] So I have used this analogy of like shoes, you know, everybody has a different pair of shoes for different kind of, um, [00:10:00] situations like you would not wear like heels to go hiking in the woods. And, you know, maybe some people would, but you're not going to get very far, but you know, different people have different preferences for shoes.

[00:10:12] And I think. We're going to see that also with shields and masks. Um, I think I'm finding, you know, that people have multiple. Masks. Sometimes they're all the same style, just different colors. I have different master shields for different situations that I'm going to be going into. So the mask that I might use to go to the grocery store is going to be very different than the mask and  shield that I will be using in my audiology office.

[00:10:42] Right. And so. Yeah, it's all about options and, and being prepared, you know, Carrie and I were talking that I think the hardest part of this whole pandemic is we don't know what we don't know. So how do you plan for something that you have [00:11:00] no idea how it's, you know, how the virus is going to react. And so again, it comes down to options, but.

[00:11:08] Knowing what the options are and knowing how to maximize that option for that situation. And, and really that comes down to knowledge is power. Right. And that's why, you know, I carry an eye and like other people have been so passionate about like educating other people and using our perspective. Um, you know, like Carrie and I talk about, you know, what it's like to have to listen to a computer all day.

[00:11:36] I mean, the whole zoom fatigue is so real and even more so, you know, for our students that are deaf or hard of hearing. Um, and so, you know, with this upcoming school year, some kids are going to be all virtual. Some kids are going to be in the classroom. So obviously there's not going to be one solution that's gonna work for all.

[00:11:57] So you gotta pick your shoes. [00:12:00] Yeah. It's almost like. We have to have a big recipe of different choices that. Out there. And like what you said, Tina, I think knowledge is power and being able to try out these different options that are out there and say, Hey, this one works really well for me, but this one doesn't work as well, 

[00:12:23] For me in this situation. So putting yourself out there and trying different things is really, I think, critical at this point in time. And you brought up a good point too, about, you know, we don't know what we don't know. And I think that goes back to. When you look at this pandemic, which is worldwide, but we're looking at it from reopening in the United States.

[00:12:49] There's not a one plan to reopen every school. Local school district is really lucky, could not their own plans for [00:13:00] reopening. And I think at the top of their list right now is if there be opening is how do we do busing and how do we. Make sure we have enough space to spread people out. So I think even though mask or face coverings are going to be required, I don't think the impact of how it's going to affect listeners, whether you have a hearing loss or not how much this is going to impact them.

[00:13:32] So I think being able to do this research ahead of time. It's really going to be helpful when schools do video, um, and know what their plans need to be. So if, if a school says, yes, you can wear a face shield. If you have physical distancing, we have tried out some face shields that might be good, or no, you can't use facial.

[00:13:55] Does that? All, these are some ideas, but clear my ass, [00:14:00] um, that would give some visual access. So. Um, I don't know. Do you want to say anything else about that? You know what I was just thinking about, you know, you and I have been concentrating a lot on educating other educational audiologists and teachers of the deaf and kind of spreading our, our message, but what you just said, just really kind of hit home that.

[00:14:26] Everyone is starting to realize how much harder it is to hear, and to listen, um, behind the masks and shields. You know, we were on a call yesterday where we were talking about, um, vocal fatigue, you know, our teachers that are going to be, you know, in the trenches, your voices are to get tired. You know, it's not going to be as easy to just take a sip of water as it was before.

[00:14:49] It's going to take a few more seconds. Cause you got to find a safe place. Take off your mask, put your mask back on, but I'm almost thinking, you know, some of the things that we've been thinking about, we need to start [00:15:00] reaching out to gen ed teachers too. Or, and, or we've just, we need to go straight to administration and let them know, Hey, you know why we know about some coats technologies that can help your teachers with their voices.

[00:15:14] We know some technologies can help your kids hear better. Um, even if they have normal hearing, I mean, in our area, the kids that are going to be like prioritized for going back to school are going to be kids on IEP and 504s, the kids that are English language learners. The kids that are getting free and reduced lunch.

[00:15:38] Those are like the, the groups that we're looking at. And for them, it's going to be the hardest for them to stay focused. Exactly. And we know from just a few studies that are out there, no matter if you're wearing a cloth mask or the paper, a surgical mask or a shield. The decibel level or [00:16:00] that loudness level, the clarity level is reduced. so about all, uh, younger grades who are learning literacy skills, phonics, and you need to hear high frequency, S an S H and T H and C H in order to.

[00:16:17] To develop those skills and you put that mask on and you've just filtered all those sounds right out. So I agree. I think this masking dilemma or masking face coverings is not just. It impacts us greatly because we really rely on a lot of the visual facial expression. But I kids with normal hearing, all of a sudden saying, I can't understand you either.

[00:16:46] And because you don't realize how much your face communicates right. So one thing I wanted to kind of go back to too is we've you said you're a hoarder of mask [00:17:00] and I keep buying mask like left and right. Different clearmask to try out. Um, what are some of the things that you've seen? And I was surveys.

[00:17:13] That really stand out as far as pluses and minuses for when you wanna buy your mask or when you want to buy your shield. Oh, that's a really, really tough question. Cause it's, it can be so individual. Right. So let's think about this. So retention, so people have different opinions about the ways they want to put on the mask.

[00:17:37] So again, like I said, some people like your loops and some people. Like the tie behind or the elastic band. So that's something to consider in the mask or the shield that you're going to buy. Um, you know, people are really concerned also about breathability, you know, like if you're going to wear, especially a mask that has the clear window [00:18:00] because it's plastic.

[00:18:02] or vinyl, the airflow was not going to be as efficient as, uh, an all cloth mask. Um, yeah. And you know, from what I've been reading that masks that are essentially cotton, um, you know, like two or three layers of cotton are the most breathable. So finding a mask that has, you know, cotton in it is pretty important.

[00:18:26] Um, people are also concerned about, um, how much the clear window might fog. So for me, I have found that the more rigid or the thicker vinyl or plastic stick works better for that, um, because it stays in its shape, whereas kind of like some people were using like shower, curtain, material, or something like that.

[00:18:48] But when it gets to. Wrinkly then it can create weird glares. And it's also kind of more prone to fogging versus like a really kind of solid kind of surface, [00:19:00] um, masks that don't sit flat on your nose, against your mouth. That kind of go  jut out a little bit. And that can be accomplished. Pushed with the pattern of the mask.

[00:19:11] Like if there's darts, that's something I learned from the, um, the other teacher friend that I was talking about. Just the importance of having darts, because then it pulls the mask away from your face so that when you talk, the vinyl is touching your lips or like when you start breathing that you don't second, this plastic, um, what else.

[00:19:31] So for shields, um, in order to use shields in our area, it needs to extend below the chin and it needs to extend back. Um, one of the reasons that shields is not widely accepted and all situations is because there's still this open side. And if the purpose of the shield or the mask is to keep you from infecting others with respiratory droplets, [00:20:00] if you have it open, then that chance is still there.

[00:20:04] And so, um, you know, in our area, um, shields in some areas are going to be allowed, but you have to maintain the six feet of social distancing, right?

[00:20:19] Go ahead. Sorry, I didn't mean to interrupt you. I can't remember one mask that we haven't talked about, but I was thinking about if you are allowed to wear a shield to almost the Gator mask where, you know, you have the shear, but if you have to get closer, you could pull that up. It might help with. The retention piece.

[00:20:42] Um, and then you can pull it back down. So, um, that might be another option. If the schools are able to wear a shield, but they have to wear something when they're closer. I'm shaking my head because I was just thinking yesterday, [00:21:00] I need to get a Gator, which I don't, because that's just one more thing that we have to buy, but I've seen a lot of people say that, you know, for, for people that are deaf and hard of hearing, they liked the Gator because it pulls up from underneath and it does not affect their hearing aids or cochlear implants or glasses.

[00:21:19] It doesn't, you know, like pop them off. So yeah, I think you and I are going to be buying some Gators. I think so too. I actually have some, and I use them to keep my implant on my head when I work out. So it's been nice because you don't have to wear a mask when you're actively waking out, but then when I'm done, I can pull it down and it becomes a mask.

[00:21:43] That's brilliant. Right? We've become creative in this whole process as well. Don't we? Well, yeah. And that's, you know, like you talk about multi-use my husband asked to borrow one of my face shields, the one that has the [00:22:00] balaclava, or like the, you know, the cloth that goes down to the shoulders because he was going to be working with a, saw like a Woodstock and he didn't want saw in his face.

[00:22:10] So he asked to use my shield and it worked. And how do you like that one? I know it's called the humanity shield and I think some other companies might be coming out with something similar too, but it's that base yard with a little cloth. So it has a little more protection for droplets. I mean, there's really only two.

[00:22:33] Designs. And I've seen so far is that one. And then the Badger shield out of the university of Wisconsin that have, they basically take a shield and then they attach some kind of cloth to the bottom of it. Oh, that reminds me. I saw someone that they attach kind of like a, um, a scarf. Ah, yes, I think I saw that one too.

[00:22:55] Yeah. And so, um, those kinds of seem [00:23:00] to be the best of all worlds, um, because it does protect more so than having a totally open face shield. Um, some people like them and some people don't, you know, like one of the biggest complaints I think about these shields is that like, so if I'm, you know, I'm the person with hearing loss and if I'm wearing a face shield, But when I talk, the echo comes back so loud.

[00:23:25] Some people really don't like that. Um, some people, yeah, they just don't like the style. They're also a lot more expensive than just a traditional face shield, um, or even a mask. And so there've been, you know, like good and bad things about that. Um, but. To me, that design right now, you know, having some kind of face shield and having some kind of way to contain respiratory droplets with like a, a cloth kind of covering, um, is a good idea.

[00:24:00] [00:24:00] Um, we just need to figure out a way to make it, um, we need to make sure that it's reusable. So being able to like wash the cloth or something like that. And I, the one with a scarf, I think she put snaps on it. Yeah. But you could actually take off the scarf, right? Yeah. So it needs to be usable and we need to make it affordable for our schools because at the current pricing.

[00:24:26] And I get supply and demand. Um, the current pricing right now would make it kind of not possible. I mean, I know they're probably bulk discounts, but they're still pretty pricey for what they are and ordering for a limited number of people. But for like you said, a whole district, or that would not be feasible, I don't think.

[00:24:50] Yeah. And that's a whole thing too, right. That we're struggling with, like who, you know, it's been confusing because some of the language has kind of [00:25:00] suggested that the people that have an exception to wearing a mask are people that are deaf or hard of hearing. And it's like, no, it's the other way around.

[00:25:09] It's just the people that are talking to them, the people that are deaf or hard of hearing, which really means everyone else. Right, right. So the people, most of the people that I know that are getting these like clear mask or the mask with the clear windows are people that are deaf or hard of hearing.

[00:25:29] So think about that. It's a little bit backwards. It really is. But you know what? I think it kind of goes into. Being an advocate. Right? So when we think about reopening schools, parents, and, and people, you know, who work with deaf and hard of hearing, um, people like you and me, we want to know what does work and what options there are out there so that we can share that knowledge with.

[00:25:59] [00:26:00] Others. And I think that's with school right around the corner that some of the questions that I'm getting right now. Is Okay. We have these students which been talking about, but now what should we order? And I think that's kind of our going to be our next step and why the survey is so important, because like you said, um, You know, what, what shoe fits you might not fit me.

[00:26:27] And by having that knowledge out there and being able to rate, you know, someone might say, well, I don't, I like the ear loops. And you say, I don't like the ear loop. So let's find a mask that would not have your loop, so it would have your loop. So I think those are important. Things to have out there. So when we do go back and people do need to order something and they are in a bind, they have that information, right?

[00:26:55] Yeah. I know we had talked about, um, getting the [00:27:00] summaries from the responses and doing kind of like trends. You know, and I think that'll be important. You know, the other thing that I think it just occurred to me too. So like you and I have this power to help administration make a decision about what masks and shields to, to order based on our kind of perspective and our knowledge and things like that.

[00:27:26] I think we need to. So remember that we also need to ask the kids, like, don't assume that what we pick for them is going to be something that's going to work for them. You know, it's the same thing. When people give me an accommodation based on an assumption, but that's not really what I want for that situation.

[00:27:44] Um, if they gave me the wrong shoe and it didn't fit, the shoe did not fit or the shoe is ugly or the shoe doesn't match my clothes, whatever. But. Um, I mean, and that's hard, you know, like [00:28:00] things will become less expensive when you buy things in bulk. And, you know, I know that administration needs to make a decision, but understand that there may be some kind of outliers out there that, you know, if they have a sensory disorder, they may not be able to tolerate, you know, what another kid can tolerate.

[00:28:19] So again, finding the right shoe. Right. And I think having those options out there and having, I think we talked about different flexibility and guidance and contingency plans, right. So depending on how, you know, we're opening up and. The individuality of the student and what the accommodations of the student side is going to be really critical.

[00:28:45] And I think that's going to be a huge job as we start thinking, we are already thinking about schools and reaching out to parents and students now and saying, Hey, you know, how have you been doing in the [00:29:00] community? And what kind of accommodations have you used? As a student, if they're old enough to tell you or.

[00:29:09] As a parent and gathering that information now is going to be important to share with that educational team as we open back up again. Yeah. You know, it might be I'm thinking it might be good to target some of the administration, like, you know, within our group from like educational audiology, I think now would be a good time to start saying, Hey, did you know about this information?

[00:29:35] Because I understand. That too with hearing loss and, um, vision loss, being low incidents, you know, sometimes we're not even on some administration's radar, you know, one kid, you know, for three counties that has hearing loss. You know where we're not going to be on people's radar, but I don't think [00:30:00] it hurts.

[00:30:01] Um, but I think what is at the forefront is that everyone is struggling to hear behind masks and shields and everyone in all settings, you know, at the doctor's office, when you go to the grocery store, I school is going to be crazy. It really is. So as we kind of wanted it, the maybe leave out a positive creative kind of note with everything that's going on and maybe just kind of wrapping up with some different consideration that others might want to have as they be open.

[00:30:40] And I think you've said a couple of them, one being, I think. Again, we have to remember every student is individual and the accommodations or the shoe, um, might be different depending on how they're learning, whether it's in person hybrid, [00:31:00] remote situations, um, their shoes or their mask or their accommodations is going to be a lot different.

[00:31:08] What else do you think. I think everything is really different depending on your perspective, right? Like if you're a teacher right now, thinking about going to school, you know, you're gonna want to be thinking about how keep yourself safe, how to keep your students safe and still being able to teach. Um, I think I know I've talked about this before, but I'm really worried about vocal fatigue in our teachers.

[00:31:33] So definitely talk to your administration about like planned breaks. During the school day where you don't have to talk, um, you know, figure out a safe place to stay hydrated. Um, as I cough throughout most, every webinar that I go through, cause I drink so much coffee. Now I'm trying to drink water and it makes a big difference.

[00:31:54] Um, so you have that perspective, you know, from the teacher, um, you know, [00:32:00] from the student level, I, I think, you know, when we talk about shoes and contingency plans, Um, people need to think about how is a student going to get the best auditory access if they used the residual hearing, um, when they're online, how are they going to get auditory information?

[00:32:22] If they're in a classroom setting. And then the other thing we need to figure out is the transition going from both. Because, you know, we're going from basically going from virtual to in-person chances are that we're going to go from in-person back to virtual. So we do have to see, you know, we threw everything together and like a week in the spring, you know, and we were all kind of scrambling webcams were getting bought up headsets with boom microphones.

[00:32:50] Um, those situations need to be, you need to have a plan. Um, for those kinds of situations and for them, the students that maybe are more [00:33:00] visual, maybe they use sign language interpreters, or whatever, making sure that they have the technologies that, that they need, um, to get access with educational interpreters, um, you know, having a decent wifi connection.

[00:33:15] Um, things like that I think are really important. And I think we've done a pretty good job. I'm thinking about it since March, when it wasn't kind of so acute in terms of the need, um, And then, you know, like parents, if you're a parent and your kid is going virtual and you have to stay home with them, you know, thinking about how are you going to help them, you know, get on the computer, listen to what they're doing, you know, talk to your education audiologists.

[00:33:46] That's what we're there for. To make sure that, you know, we can connect your computer to your kids' technology, um, provided you with resources and things like that. So we talked about knowledge as power [00:34:00] and, you know, I think that's what this is all about right now. We're still, you know, creating knowledge and we're still soaking up knowledge right now.

[00:34:09] Right. And then, yeah, always going back to that student and asking them. What's working and what's not working. And I think educational audiologist and teachers of the deaf and parents can really help them navigate. And this is, I think one of the pluses of this is we are forcing our kids  To be better advocates for themselves because they don't have a choice right now.

[00:34:36] And so I think, you know, whether it's, I can't understand because of a certain mask or a face covering two, what other technologies could we utilize in order to improve the signal to noise ratio? So you might have a user or a non-user of remote technology or microphones who now becomes a user because.

[00:35:00] [00:35:00] They have to advocate more and they are in a more compromised environment. So I'm hoping we'll see a lot more strong advocates of I could because of all of this too. Yeah. And I was just thinking too, that we also need to remember about mental health. You know, like these family is some of them, you know, they're in a trauma.

[00:35:23] Environment. And so some of these kids, it's going to be really, really hard. And I know that the teachers know this, but our kids that are deaf or hard of hearing also you know, some of them yeah, in this situation or even more isolated than they were before, but at the same time, I have known kids that have also thrived.

[00:35:45] Um, in this environment because they do have the ability to hook into their computer. I mean, the fact that you and I can just do like zoom at the drop of a hat and have visual access and [00:36:00] auditory access. You know, when we chat online and stuff like that, but there's something more powerful about like seeing your face and you know, and all of that.

[00:36:10] And for some of our kids, this has actually been a great thing. Like I know that I've been able to participate in meetings and I never would have done before if we weren't, if everybody didn't now have the infrastructure to do everything online. Exactly. And I think it. Forces you to get outside of your comfort zone sometimes.

[00:36:33] So I know just kind of going off of what you said. I mean, being a newer cochlear implant user, when we went online, I was only three months Post activation. So I was freaking out about my ability to participate in zoom calls and Google classroom, like all of these different platforms that were out there and how, how I was going to navigate it.

[00:37:00] [00:37:00] And, but honestly pushing me out of that comfort zone made me realize that, Oh, wait, I. Doing a little better than I thought I would. And, um, I'm going to figure it out, other accommodations that I need in order to make it happen. So I think it, I don't know, jump started me with some of my confidence with my cochlear implant.

[00:37:26] So that was a positive, I think that came out of going online. Absolutely. Yeah. And like, for me, it's like, I'm so tucking that for me, what, the hardest thing for me is not doing so much of an information dump because I need to realize that people aren't as scattered or have as many options as I have in my head for how to do things.

[00:37:53] But you know, like off the top of my head, I can figure out seven ways that you can access zoom with captioning. [00:38:00] You know, but not everybody knows that. So, you know, like I know that things that you and I have been working on and other things is making them in more like, um, Like chunks that are more palatable for people to be able to understand, which is why, you know, we'll do the surveys and summarize it and help people realize that, Oh yeah, you're not the only one thinking about that option or what works for you and what doesn't work for you.

[00:38:27] Right. That is definitely one of your huge strengths. Tina. I think everybody knows you by your apps and your, um, Connectivity and all of the resources, you, you always have them. And I'm amazed. I asked you a question and like two seconds later, you'd come up with a solution. I love it. And then the thing is just like that.

[00:38:53] Can spread, like then you will use that, you know, like I think about all the great stuff you do with the teens and [00:39:00] those teens are our future leaders and that deaf and hard of hearing community. Right. So we all have a, I think. Purpose within educational audiology, for sure. And I love that we are a community that shares all of our knowledge, because like you said, it's a ripple effect, so it's not, it's really the future that's benefiting from it.

[00:39:23] And that's what we want. We want all of our kids who are deaf and hard of hearing to have the same opportunities. As anyone else, and to be able to do whatever they want to do, but they need the tools or the shoes as we're calling them today, um, to be able to do that. So I think, you know, this is just a powerful conversation about the pandemic and what we are kind of thinking forward about.

[00:39:50] Going back to school, but Tina, I feel like maybe in a month or so we might have to have another conversation [00:40:00] because I think, you know, what we thinking about and thinking about what might work, some of them are definitely going to work,  I have no doubt about it, but it's just the little, you know, extra pairs of shoes we might not, we might need to have, um, In order to make things happen.

[00:40:20] And we, we don't know what those are yet. No, because we have not had the situation where teachers and students have had to be in the classroom socially distanced and wearing masks or shields. So I agree. I think this is ever evolving and I'm thankful to have you on this journey with me. It's always so awesome to like bounce ideas off of you because.

[00:40:45] It does. And you know, it's so nice to have that village. I appreciate everything you do today. And I so appreciate you coming on to the podcast today. And I hope that this information is going to be helpful. [00:41:00] To all of our listeners as we open up the school year. And, um, Tina, I will probably be reaching back out to you to maybe do part of our episode today and just kind of, what did we learn from reopening and.

[00:41:16] What new tricks and shoes do we have out there. So before we log off today, I know Tina, you have a website and you have different, um, avenues that you have your name out there. You want to share that with our listeners so that they can get ahold of you. So you had talked about like maybe putting out like our written description and it's basically, um, so like, you know, yeah.

[00:41:43] We were talking about earlier, I have this name to like gather yeah. Information. And then my thing too is I make lists. Or like spreadsheets. So it got to the point where I now have to make a list of my lists. And [00:42:00] so what I will get to Carrie is that it's just a, it's a Google sheet that has all of the different resources that I've created over the years.

[00:42:11] And, um, I will get that to carry to spread, but just know that. Um, there are different things that I've created, like app lists, like lists for apps that. Work for Apple devices or Android devices, um, geared towards people that are deaf or hard of hearing. Um, another thing that's really popular is one on speech to text options.

[00:42:35] So, you know, how do you get captioning? Um, when you're on a zoom meeting, Um, how do you get captioning? If you go to the grocery store and you can't understand someone? Um, I co-created a knowledge base with, um, a friend that looks more kind of at like the college level or the work level, having access and those kinds of [00:43:00] situations.

[00:43:01] Um, I have a social bookmarking site that has just. Over a thousand links that I've been saving for 12 years. But what I like about that is that categorizes things. So in the time of this pandemic, anytime I've seen like a video or resource that I think is pretty cool, I added to that social bookmarking site.

[00:43:22] So I have all kinds of like video tutorials about access for zoom or Google meet or all of those kinds of things. So I know it's, if you do a deep dive, you'll go down this rabbit hole for, for hours, but I figure I'm already looking for this information, so I'm willing to share it and kind of help whittle it down by categorizing it.

[00:43:45] And we do appreciate it. Cause I know I go to your website and you have a Facebook page and find the resources that I need because you do go down a rabbit hole sometimes, but to have at least it categorized and know that [00:44:00] I'm not gonna start looking at, you know, the best way to make pasta when I'm trying to look at something, but hearing is a good thing, right?

[00:44:11] Yeah. Well, thank you again for coming out to the empowEAR podcast. And like I said, you will be invited back again, but part two as when we opened back up. Awesome. Thank you so much, Carrie, for this opportunity and thank you to everyone out there. That's there to support our kids and this time. Alright, thank you.

[00:44:34] This has been a production of the three C digital media network.

Episode 4: EmpowEAR Audiology - Camille Warren

[00:00:00] Welcome to episode four of EmpowEAR Audiology with Dr. Carrie Spangler. 

[00:00:07]So welcome to the EmpowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners, whether you're a professional, a parent or an individual with hearing loss, or just want to be inspired. I am glad that you are here with us today. Don't forget to subscribe. So you don't miss an episode. 

So today I'm really excited to have one of Ohio's star parents on the podcast today. Camille Warren is here today and she is going to share a little bit about her own family journey, parenting children with hearing loss, as well as we plan to have a little conversation about the uncertainties of returning to school, whether that's in person, hybrid, remote. 

A whole mix of everything and what that means. Being a parent of children that do have hearing loss. So Camille, welcome to the podcast and thank you for being here today. 

Thanks for having me Carrie. So before we get started, I thought I was just kind of thinking how we have known each other for a long time. 

[00:01:34] Yeah, we have. And I'm trying to think of when we actually met. Well, as I, as I recall, that was, when you were serving as co chair of the new universal newborn hearing screenings subcommittee here in Ohio. And, somebody had suggested that I joined that subcommittee, as a parent, because there's a parent role in that subcommittee as well. 

[00:01:59] So I remember having conversations with you on the phone before my first meeting. And I think that's when we first talked. All right. So that was probably at least maybe 15 years ago. I don't think it was quite that long ago because yeah, because you're going to talk about right. I think that all three of my children with hearing loss had been born at that point. 

[00:02:23] And my youngest with hearing loss is now 10. So I would guess maybe. Nine years ago. Okay. Yeah. That makes sense. Time flies. And I just appreciate your positive and proactive voice in the state of Ohio because you've done so much for the newborn screening committee and also for advocating for newborn hearing screening for kids in Ohio. 

[00:02:49] Hopefully we'll be able to have some more movement with that in the future here. Once COVID settles down here. Right. [00:03:00] Camille, can you just share a little bit about yourself and your own family and your kids and kind of how you got to this leadership role of advocating for kids? Sure. I, yeah, I think that I sort of fell into it after I had my own kids who have hearing loss. 

[00:03:19]I have four children. the oldest three of whom are identified with moderate or moderately severe, depending on the kid, hearing loss. My oldest is Ellie and she is 17. And then I have Theresa and she is 13 and Toby is 10. And then I have a toddler, Bernadette. She is two.

So my oldest was identified when she passed her newborn screen and she was identified at three and a half with a moderate hearing loss. They identified it through just sort of a general preschool, screening that her private preschool brought somebody in to do hearing, hearing and speech screenings on the kids. And, so they happened to identify her through that. 

After she was identified, my next daughter was young. She was like six months old when my oldest was identified. And so she started going in every six months for, for hearing tests because of family history at that point. and she had also passed her newborn screen. She had some middle ear effusion as a little one. 

[00:04:31] And so she had, we didn't have a great test until she was about 13 months old after having PE tubes placed. So they put in tubes and then at 14 months, she tested with fine hearing. Her hearing was fine at 14 months old. And then we went six months later for a followup and she tested with a hearing loss at 20 months. 

So, somewhere between 14 and 20 months, she, she lost her hearing. And then my next child was born and [00:05:00] he also passed his newborns, but he was a C-section and we were in the hospital for four days. And so they tested him four times. I didn't know, at the time, even, even a, you know, a seasoned parent who had been around this a few times. 

I didn't know that they weren't supposed to test four times. So, it took four. Attempts for him to pass his hearing screen. So we still, because of our strong family history, at that point, we went for, or a for an ABR one month, the full diagnostic testing at one month. and he did have a mild hearing loss at that point. 

So even though he passed his newborn screen, he probably shouldn't have, should have referred after the second testing really. And then he had a further progression of hearing loss at about age three. We went for audiology at about age three and he had progressed to the moderately severe range. 

So, those are my, those are my three kids with hearing loss. I also have the toddler, so because my kids have all been identified or have had progression within toddler range, we're keeping a close eye on. But so far, she seems to be progressing. Normally she passed her newborn screen. We did take her for a full diagnostic screen, full diagnostic tests anyway, because of my family history. 

And she also asked that and she's had a few, follow up audiograms as well that have also gone well, so, so far so good for her. Good. So you obviously have a lot of experience with having three out of your four kids, having some degree of hearing loss and neither one of your husband nor yourself had hearing loss. 

Correct. I actually have, a moderate hearing loss on one side and it occurred to me suddenly at age 30. My daughter had, had what is, I mean, it was never identified, but what was the suspected to be RSV? And, I also had a cold at the same time and I was so concerned about her, that I wasn't really worried about the fact that I suddenly couldn't hear.

[00:07:00] [00:07:00] So I didn't follow up right away. as a, as an aside, if an adult ever has a sudden onset hearing loss, you should go to your ENT right away. but it's, it's a, it's a moderate loss. It's about approximately the same as. It looks very similar to my oldest daughter's, sort of cookie bite presentation. 

[00:07:20] So it's unknown as to whether mine is, is related to theirs. It looks so similar. Or if it's due to a, due to a viral, Yeah, but it's only one sided. Okay. Wow. So I'm sure though, with all of this going on on right now and the world, there's been a lot that has impacted, I think the world of, individuals who have hearings challenges, but it's a unilateral loss, maybe yourself as well as your, as well as your kids, but, I had the opportunity a couple of weeks ago to talk to an administrator at the [00:08:00] national level Cheryl DeConde-Johnson. 

[00:08:01] And we had a lot of conversation about reopening of schools and then Tina Childress's and I had some conversations about, just adults in the world, who happened to be educational audiologist, and I feel anxiety about going back to school. So I'm. Curious to find out from you from a parent perspective. 

[00:08:24]and I'm sure your, your kids are talking to you about return to school. but before we talk about return, return to school, we all sat down and mowed. In Ohio. And so went to a quick online virtual platform. And I know all of our teachers are amazing in the fact that they could pivot so quick and try to make things happen when you're not used to teaching that way. 

[00:08:52]but it does pose a lot of. I think challenges, when we are talking about learning and [00:09:00] accommodations. So was there anything that you learned or that kind of stuck out to you homeschooling your kid through this pandemic part of March through now? Right. So. It's back in March. I think the things that worked well for my, for my kids, a big plus was, getting the broad band system from the school. 

[00:09:27] And in order to use that, with online with zoom calls and things like that, that that really helped a lot as far as, Yeah, sort of cutting down on, on distractions and background noise and that sort of thing. I'm trying to think of each, each kid, you know, as, as the alternative to that, like distractions were really hard. 

[00:09:49] My role, especially really struggles with. You know, a zoom call that at the time had over 20 kids called into it and the [00:10:00] teacher and she, if she was free kids engaged and would try and replicate things that they had been doing in the classroom, which was a great concept, but it was very hard for him to follow. 

[00:10:15] So she would do things like in the morning, she was. Question and then go around the room and ask all of the kids to answer the icebreaker, which sometimes was okay. And sometimes it was the kids build off of something that the previous student had said, and the conversation was really hard for him. 

[00:10:40] Grasp everything that had been said, hold onto all of that, that, that language information, and then build upon it in the moment that, that he was given. So that kind of thing was really difficult. even though he had been doing similar kind of icebreaker, get to know [00:11:00] you get comfortable kind of. activities in the classroom all year long.

[00:11:04] So like in the classroom, he was comfortable with it. He could participate and it was fine, but when you put it online, it was just this whole other level. That was, that was hard for him. So that, that's the kind of thing that I would say was hard. when as time went on, the teachers got better and better at. 

[00:11:25] Muting and unmuting students as, as they, she needed to do order were to keep this whole room, this whole group of 20 plus ten-year-olds from, you know, making, making noises in the background. And so that got better and better. I think the combination of getting people as needed, to a certain extent, breaking down into smaller groups and also the use of the Roger system. 

[00:11:51] All of those things together, definitely helped him feel like he was in a place where he could participate better. Did [00:12:00] the teachers do anything like in the zoom meetings as they went forward? I know you said they broke them into smaller groups and they were able to use the Roger system, but did they have any other, like maybe rules for those zoom or Google classroom that helped, you know, kids. 

[00:12:20] I think ways was, was there were supposed to as much as possible we'll have video on and have mics off. So you had to say something you were supposed to have your microphone off that would make it a little bit easier for her to manage the room that she wasn't constantly meeting people. I think that that, that definitely helped. 

[00:12:41]one other thing is an example, you know, talking about. Elementary school is very different than talking about high school. And I do think that there are challenges and on school that are, they're just different. she was planning on, you know, it's that time in the year that she had a certain book planned for a read aloud. 

[00:13:00] [00:13:00] And so she did her read aloud over zoom, which is fine, but no was normally Toby would have been okay in the classroom without having a book to read himself. When you put it online, it was just one more step, more difficult. So we bought him a copy of the book and he was able to read as the teacher was reading, that kind of thing, it just became very obvious when and where, where he needed visual supports. 

[00:13:30] For the most part, it was things that were auditory only that he suddenly, you know, he over. Classroom. He might've been fine, but via zoom he needed, he needed some visual support as well. These are all good. I was writing down some of these notes because I think, whether a lot of schools, what was I going back either a hybrid model or, a virtual platform and we can take right. 

[00:14:00] [00:14:00] This turnaround was really quickly even though in the spring and use it, as an advantage. Right, right. Yeah. The other thing that I will add that we are doing this here going forward. Again, specifically for Toby. And I think a lot of this is just because coming from the spring, he was the one that struggled with it. 

[00:14:22] The most, it was, it was different in high school. They were already used to doing a lot of things, self paced, and interacting with all of the apps that they needed to interact with that sort of thing. So like for my older kids, it was not as big of a deal, but for Toby, We are going to be, crafting for him a communication plan, which I don't know if you're familiar

with in Ohio, that we have this, there's a document that was put out by, the, by OCALI they are the house, the document, they own the document. 

[00:14:55]and it takes you step by step through. A lot of [00:15:00] different, parts of, of the day and all the different ways that you need to be able to communicate. And it writes down a plan so that you have, so that you've, you've hopefully thought through everything. So how is your student going to. Get the, the announcements from the PA, how is your student going to receive information? 

[00:15:20] If there's an emergency, how is your student going to, get, make sure that they have all the information they need for homework sort of thing. It really switched to step-by-step all the different ways that, that communication happens in the school. and it, and you draft a plan. so we're actually going to be working on that for two, for Toby, in order to hopefully help him have a little bit more of a smooth time. 

[00:15:45] As far as this, this communication needs go need to be going forward. Yeah, no, I think that's a, an excellent idea for parents to be aware of, especially because the accommodation that [00:16:00] are in place for them currently might not be the accommodation that they need with the extra safety and health Precautions such as mask and distancing. 

[00:16:12]and, but for learning that are taking place right now, that really complicate, like you said, learning and especially, with interaction and, and the early grades as well. So yeah. So Camille, you talked a lot about remote learning, right? I think we have some really good tips about. What we could do if we end up pivoting back to that or with a hybrid model. 

[00:16:38] And then I love that point about having a communication plan that, OCALI has. and I I'll definitely link that after episode today. So people want to take a look at that. They can, revisit that information as well. that what I wanted to talk about next is just over the summer. Now that [00:17:00] everybody's kind of been home and you've been able to, go back out a little bit safely. 

[00:17:05] Is there communication challenges in your everyday life with your kids that you've noticed? the first time. So we, we have been very cautious as a family as far as going out goes, we, we really took the stay at home order to heart and my kids have not. You know, even, even to this day have, have had sort of limited exposure. 

[00:17:28] I'm outside with the exception of going to parks and walks and, and things like that. but I do have a, have a memory that, and say it was in June, Ellie, my 17 year old and I both. Made an appointment to give blood. And when we got there, it was one of her first times really interacting with a lot of people in masks. 

[00:17:54]and she hadn't, she, she struggled with, with listening [00:18:00] to the people at the check-in and understanding people as they were asking her, You know, health, real health questionnaires that are required before, before giving blood and things like that. and so that was sort of like I put in my head that this was going to be a problem, but that was the first time that I really.

[00:18:19] Observed it. and she knew also similarly than it was, she knew theoretically this was going to be an issue, but then to actually experience it, it's kind of a different thing. So yeah, no, and I kind of felt the same way Ellie. Did I remember. I knew it was going to be a 

problem, but until you put yourself in that situation and experience it for the first time, you're like, Oh wow, this, this is really hard. 

[00:18:47]and so I think I had gone to the grocery store and. It was just, it was a closed set of question, not even, I mean, that's a, that's a pretty open set of questions. As [00:19:00] far as giving blood. This was like, are you paying by credit card? Or if you want paper or plastic. And, it was still, you know, that short amount of time, it took a lot more energy to. 

[00:19:11] Focus and pay attention and be an advocate and ask for repetition and that kind of a situation, which kind of brings me to the next topic that I wanted to ask you about is. First of all, do you know how your schools are opening and what you're considering? And, the second part of that would be, what do you think some of the challenges about reopening might be and what parents should be aware? 

[00:19:41] Sure. School district has actually not yet announced how they are going to open the first week. they are tying their plans very closely on a week by week basis to how our County is doing on our [00:20:00] statewide. Map. So they, they code are each County by, by color so that if you're doing great, then you're a yellow. 

[00:20:08]and if you're not doing so great, then it goes to orange and then red and then purple. And so our school district has decided to tie themselves to that rating system, which is announced every week on a Thursday. And so based on each Thursday's rating, We'll determine how our school operates in the following week. 

[00:20:32]and this is their plan for the entire school year. So really know, much more than, you know, it, whoever knows, you know what I mean? It's kind of like, well, I think most it's all a. It's all Mirage anyways. Right? So whatever anybody ever, he knows what's going on, but we really don't know what's going to be happening so Thursday at any given week. 

[00:20:57] And so. It [00:21:00] appears as though we are highly likely to start in an e-learning, manner. And then if things get better, we may be moving to hybrid. but things would have to be going really, really well for us to ever be all in. and that's kind of, kind of how they're. They're looking at doing it. So I just to be prepared to be e-learning, because they, they both want the two who are going to be returning to the, to the public school, both want to be in school. 

[00:21:32] So, I'm just hoping that at some point we will get to a point where we can go hybrid, So, yeah, the, the, my 10 year old and my 13 year old, will both be returning to either e-learning or hybrid. However, we start, and continue the school year at our, at our public school. my, the reason and the reason for that is that my, my 13 year old. 

[00:22:01] [00:22:00] She really wanted to return for band. she plays clarinet and she was very excited at the end of last year that she was placed into the highest band that she could be placed into. and she had worked very hard for that. And so because of her strong desire to return for band and also the eLearning platform like that online Academy, they call it if we

had chosen only online, That would not have offered a foreign language, for middle schoolers. 

[00:22:30] Cause they consider that to me in an advanced class. So, so because of those two reasons she wanted to return to school. And then my, my son who's going into fifth grade is also identified as gifted and our school district is not doing any gifted intervention services via, the online only platform. 

[00:22:51] So in order to have him. Received gifted intervention. We, we opted for the in person. If it [00:23:00] happens, I don't even know what to call it. Well, like you said, every Thursday, we will know. What really is a week by week plan is what it is, 

[00:23:16]your work area, the Columbus area, and getting to a level that they are able to go back hybrid or even, five days a week. do you have any. Thoughts about that? I mean, I know you talked about the communication plan and going through that a little more deeply in order to ensure that your kids. Accommodations and needs will be met, but is there anything that really off the top of the hat that you can think about as far as reopening and actually physically being back in school that creates either at a, I don't want to call it anxiety or [00:24:00] I don't know, uncertainty as the parent. 

[00:24:04] So I think that the thing that everybody worries about, is always masks. and yeah, I've, I've done a lot of reading up on that's cause and, and research into types of masks and visual access masks and cloth masks and, and all of the different options. and I think what it really comes down to is that, It's going to have to be some, some level of trial on error. 

[00:24:31]I, I don't think that there is a single, a single solution as far as masks go that will help every student with a hearing loss. some students may prefer to have their teachers and peers and anybody that they communicate with. In a simple cloth mask or a disposable surgical mask, that does [00:25:00] not attenuate the sound very much because there are, auditory learner and other students may really need to have that visual access that's given with a, a window mask or, Some kind of a face shield type mask. 

[00:25:18]but there's a lot of sound attenuation with those options. So it's really, unfortunately it seems to be at the moment, a big trade off, where there doesn't seem to be a whole lot of access both ways. so I. I'm hesitant to make a statement about what my kids will end up using, because I, I don't know. 

[00:25:40]we haven't tried enough different options. Enough different kinds of listening to figure that out. But I do suspect that the, the Roger system, the DM system will be more important than ever, because of the [00:26:00] sound. Quality issues of masks. I agree a hundred percent. And even I could, you know, the peers who may have normal, no near no, my hearing, as well as the teachers are going to all. 

[00:26:19] Realize, I think the impact that hearing has an impact in the classroom, when you have muffled speech and, and, you know, communication is a two way street. So I think, yeah. Having an improved signal to noise ratio for all of our kids, whether you have hearing loss or not is going to be important at this point in time with everything going on.

[00:26:47] And then I, I hear about different schools who want to. Have less kids in a classroom. So they're using other spaces such as an art room or [00:27:00] part of a gym to have a classroom, which again, changes the acoustics of the classroom, which makes it more difficult to hear when the sound bouncing around. So there's all these other like layers that kind of. 

[00:27:20] Come apart when you think about everything that goes into reopening schools, and even things like taking carpets and things out of room, which absorbs sound, but we want it to be clean. So there's like, like you said, there's not, it's going to be a trial and error with different types of accommodations and support. 

[00:27:44] So as we, we open schools again, Right. So, yeah, go ahead. I was just going to say no, I completely agree. And when you also think about, and again, I don't, I don't have [00:28:00] a whole lot of in depth knowledge about what my district is doing, but I have seen plans from some districts that include things like, little. 

[00:28:08] Plexi glass dividers between desks and around desks. And just thinking about the number of hard surfaces there, and, and the reverberation in those rooms, it's, it's going to be challenging and perhaps the answer for all students, what will also help the students with, with hearing loss and that's more visual supports, and making sure. 

[00:28:32] The things that I asked for, for my kids, like announcements being written down, homework, being written down, things, not given only orally, but also visually may end up being more the norm for more students. and that, you know, that's not a bad thing. No, I agree. A hundred percent that we're going to see a lot more visual supports coming, just because of the nature [00:29:00] of how the classrooms are going to have to be set up. 

[00:29:02] And then I've heard about classrooms having to go outside because it's better to be outside than inside. So I think that creates a whole another. A challenge if you're a spaced out and wind noise, and if you happen to be near a road and all of those other factors that go into being upside too. So they're going to be a lot to think about as we open and kind of be overwhelming, I think. 

[00:29:29] But, as a parent, is there anything that, because it's so overwhelming that you thought about that kind of calms you or different tips that. Might help other parents as they're going through this unknown unchartered territory. Yes, I do have a couple of tips that I can share. I'm glad I did is with things that we're talking about in my family and what we're trying to do. 

[00:29:56]the first one is practice, practice [00:30:00] with your, your kids, making sure that they can put their masks on and off by themselves. Ideally. When you're wearing hearing aids or cochlear implants or, or glasses or all of those things putting on and off a mask is actually not that easy, you know? and so we've gone through. 

[00:30:22] Lots of different styles of masks and different, means of assessment. And, especially with my 10 year old, you know, he just, he, he wants to just throw it on and go, and we've had to make him slow down and find out, you know, which side is up, everything

is oriented correctly. He just throws that, that mask on, Because it just doesn't work if it's not on correctly. 

[00:30:49]so, you know, I would just say that's just sort of a simple thing, but practice putting on masks, taking them off to him off without getting them caught in hearing aids. last thing you want to do is go [00:31:00] crawling around on hands and knees, looking for it, for hearing any of that just went flying across the room when you know, your child tore off their mask. 

[00:31:07]So that that's my first. That is a big bonus tip. Let me tell you, and then by express, but in a different way, it's also practice listening, practice, listening to people who are wearing masks, and. Practice your, your self advocacy skills, in different situations and with different people. So the way that that your child might need to self-advocate with the teacher would be different than having to self-advocate with a peer, or somebody in the office, or, you know, somebody in the cafeteria, if they're. 

[00:31:47] If, you know, in different, different situations, they need to be able to read that situation. And self-advocate appropriately, with adults and with other peers. And [00:32:00] that's really hard when you know, so much of your body language is expressed in your, in your facial expression. And that's also covered up. 

[00:32:09] So, you know, practice, reading, reading, people, practice, communicating. Practice self-advocacy. Those are all great tips as far as that can be used. I think again, online and in person and the mask, not as much in my online, which would be the bonus of being virtual compared to being in person. but even just, you know, that practice of listening. 

[00:32:40] Online and in person, is going to be important too. And I love the self advocacy skills. and you bring up a really good point about. Practicing their self advocacy skills with different people. because like you said, you're with your friends is a lot different than what [00:33:00] you're learning in class. 

[00:33:01] And, who you're talking to in the office, is really important to advocate at, at those different ways as well. So, Kind of, as we wrap up, I wanted you to just share, I know you, heavily involved, I'm actively involved in Ohio hands and voices. Can you just share a little bit about your role with hands and voices? 

[00:33:25] And, these would be like, The tips that you shared today would be like awesome tips just to, I had him put on the website right now because I'm sure there's people open back up exactly what parents need to hear, that use some of that stress that they're probably experiencing right now. Sure. yeah, I am 12 with Ohio hands and voices. 

[00:33:49]Oh, her hands and voices is a parent led parent professional advocacy or parent professional, collaborative organization, [00:34:00] families who have children with hearing loss regardless of their mode of communication. So we support families who, Use a spoken language, families who use sign language, families who use, any combination of both and or cueuing.

[00:34:18]and we support them across all, times in their lives from the moment of identification all the way through transition, after high school. So we, we do that through kind of parent to parent mentoring and parent to parent support. We also do it through a, a program with advocacy in the schools that is called Astra, and that stands for advocacy support and training. 

[00:34:50] So we do trainings for parents and professionals, both. But specifically, our audience is generally geared towards parents who have [00:35:00] children with hearing loss to help them through that IEP process, from, from, starting in preschool all the way through post secondary transition. So, so my role with Ohio Hands and Voices is that, I've been involved with them. 

[00:35:16] For eight or nine years. And I sit on the board of directors. I am past president, but I do not currently, hold a, position on steering. I am just a board member. and I. Volunteer also as an Astra advocate. So I also help families, who need a little bit of additional information or support or advocacy, through the IEP process. 

[00:35:45] So those are my hats that I wear with Ohio hands and voices. Thank you for all you do for parents. and for their kids, because I know parents. [00:36:00] They need to have other parents that to talk to and relate to and know that there's somebody else in their shoes out there as they navigate the process. And like you said, from identification all the way through, I'm sure now with Ellie thinking about moving and transitioning to her next phase of life. 

[00:36:23] Hopefully with college and everything in the, in the future. that brings about another time where parents really want to have that support as well. So, thank you for all of that you do in Ohio. you have just been such an amazing, Positive proactive person. And I'm just glad that I had that, cross through newborn hearing screening and through other ways as well, with other adventures with Ellie, it's been really fun to get to know you and your [00:37:00] family too. 

[00:37:01] So, I just want to say, thanks again for being on this. Episode. and now our listeners have gained a lot of insight and important takeaways as they navigate through these uncharted waters of going back to score, whether it's remote or a hybrid or in person. I will check out the episode summary, a link to Ohio hands and voices, and there I have some great family resources on that website. 

[00:37:30]that will help you as you start thinking about reopening or, continuing through this school year again. Thank you Camille for being here tonight and thank you listeners for joining me. Thanks, Carrie. I appreciate it. It's fun. This has been a production of the three C digital media network.

Episode 5: EmpowEAR Audiology - Dr. Carol Flexer

[00:00:00] Welcome to episode five of EmpowEAR Audiology with Dr. Carrie Spangler.

[00:00:15] Welcome to the Empower Audiology podcast. My name is dr. Carrie Spangler, and I am your host for this podcast. I'm a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. Thank you for listening, and I hope you will subscribe, invite others to listen, and leave me a positive review.

[00:00:40] I also wanted to invite all of you to visit and engage on the EmpowEAR Audiology Facebook page. So let's get started with today's episode of EmpowEAR Audiology . This episode has an important theme for all of us, and it is about lifelong learning. So when we allow new information, people and experiences to change who we are, we are open to the concept that lifelong learning is critical to who we are 

Today I have the great honor to interview someone who has made a lifelong impact on my own life. She's been my audiologist, my professor, my mentor, and my friend. And so this interview will highlight the importance of fostering these relationships and how each encounter with people and information can be powerful.

 So before we get started, I would like to tell you just a little bit about Dr. Carol Flexer. So Dr. Flexer is an audiologist. She's a listening and spoken language specialist and a certified auditory verbal therapist. And she received her doctorate in audiology from Kent State University in 1982.

She's a distinguished professor of [00:02:00] audiology at the University of Akron. And she's an international lecturer and pediatric and educational audiologist. She's the author of more than 155 publications, including 17 books. She's also the past president of the Educational Audiology Association, the American Academy of Audiology, and the AG Bell Academy for Listening and Spoken Language.

So, Carol, I am so excited to have you on this podcast today and, um, it is just, you know, thank you for coming and being part of this today. Oh, well, thank you so much for inviting me. You know, what? We have traveled such a long path together, and it's just my honor to be here with you. Thank you for the invitation.

Well, good. I am really excited to have you today. So I thought we would kind of start out with, how did you get started in the field of audiology? Well, going way back, as I was growing up, I always wanted to be a nurse. In fact, I was sure I would be a nurse. And so when, after I graduated high school, I went to the University of Colorado in Boulder, Colorado.

They had a five year nursing program that you would end up with a bachelor's degree. So I went through about two and a half years of that program. And then I decided no, nursing isn't what I thought it was. I think I want to be a doctor. So then I started looking at premed. And this was 1964.

And that also didn't seem to suit me. Then I looked at dentistry and, and I was just really looking all over for different sorts of hoops. Who was I going to be now that I wasn't going to be a nurse? Well, I stopped and then stumbled on broadcast journalism, which is just like nursing, right? How different could it be?

So broadcast journalism. And I loved it. So it's there that I really learned a lot about lecturing, about vocal control, about being able to use your voice and manage an audience. I mean, I had multiple courses and I loved it, but there wasn't an undergraduate degree labeled broadcast journalism.

It was a speech degree. And as part of that undergraduate speech degree, I had to take a course in speech-language pathology. Now they had heard of speech, language pathology. And, um, I actually really loved the course. And as part of this intro course, there was a two week lecture series on audiology. I had never, ever heard of audiology.

You know, many people and as a field know about it, or they know. I'm one with a hearing loss. I never knew anyone with a hearing loss. I mean, maybe older people, but even in my family, older people didn't wear hearing aids because. In 1964, 65, you just didn't. If you live long enough to need a hearing aid, you simply didn't wear them.

At least no one in our family. And believe me, they didn't need something. So I never, ever heard of audiology, but I fell in love with it. I mean, I just fell totally in love. It had everything, it had medicine, it had science, it had talking, it was all about talking and listening and communication. It was everything I just fell in love with. I had gotten married and I had some kids.

In the seventies, everyone got divorced. I mean, I don't know how anyone stayed married in the seventies. Truly everyone. I know I got divorced. It was just what you did. It was a little more than that, but not a whole lot more. Cause we were, we were in a whole different journey. It was a brave new world for women.

You know, we had so many more options. We can just have it all. We thought it's about time, but you know it's hard to have it all at the same time. Anyway. So, um, I then applied for graduate school. I had just gotten divorced and, uh, the University of Denver, cause I was born and raised in Denver. And at the time the University of Denver had an amazing program, master's program in audiology and speech, language pathology, and, uh, Jerry Northern was there, Bob Johnson. You probably don't know, but they were really big in the field at that time. Um, and so I, and I got a full scholarship. Yeah. I mean, a full ride. I got that. That's when there used [00:07:00] to be money. Right. I got, it was a called from the rehab. It was a Bureau. Have counseling. And I got a rehab fellowship that paid tuition and I got a stipend.

[00:07:13] So I moved out of my marital home to my two little girls and we moved into married. Also. It was divorced student housing at the University of Denver. And that's where I found myself lot at that time at the university of Denver. I was lucky enough to work with absolutely amazing people. You know, I, I knew they were amazing, but I didn't know how amazing until some time had passed.

[00:07:44] For example, I did an externship with Marion Downs and with Jerry Northern Doreen Pollock, she was at Porter Memorial hospital and it was through Doreen Pollack that I learned about auditory, verbal therapy, listening and spoken [00:08:00] language. Um, so I did this a couple of extraships with her. And at the time she was, you know, she had children in her clinic who were just doing, I mean, they were talking, they were, I just had never heard of that of children with severe to profound deafness wearing two  big body hearing aids who were talking.

[00:08:25] And I just didn't know how she. Get it. And in fact, I said, you know, Doreen, mrs. Pollock, I can't, um, I just can't believe that this, these children are profoundly deaf. And she said, well, take them into the sound room, test them yourself. So I did. And they were, and so she just opened a home. She provided the vision for me.

[00:08:51] Of what audiology could do in terms of getting information to that child now. And at that time we talked about getting [00:09:00] information to the ears. We talked about ear training, life, you all, the little hair cells were doing pushups or something. I mean, That's how we talked about it. And then with Marion Downs, um, I worked with her.

[00:09:13] She had already gone, you know, it was really well on her way to advocating for newborn hearing screening. But what I learned from her was, uh, the, the science, but really the art of behavioral audiometric testing. How do you test a baby Behaviorally?  she was a wizard. I mean, she was phenomenal. She could get these babies and parents to respond.

[00:09:40] I just, what I learned from her was absolutely amazing. And guess who else was at the university of Denver teaching? When I was a student Christina Yoshinago-Itano. She had just graduated from Northwestern and she was, um, a brand new professor [00:10:00] there when I was a first year master's student.

[00:10:03] So, I mean, you couldn't design a better dream team than I had. Could you, I mean, Christina Yoshinago-Itano,  Marion Downs  Jerry Northern Doreen Pollack. I, I just, I didn't know how lucky I was to fall in the middle of all of this innovation, all of these dynamic leaders in the field, groundbreaking research.

[00:10:29] Ground breaking ideas, who all, who together really changed audiology. And I was there with them, but I, and as time went on, I just became more and more amazed that I had that. So then fast forward. So I, I was able to, to earn my master's degree, I was then divorced. And so I then needed a job. [00:11:00] Well, Bob Johnson had doctoral students all over the country and Jim Yates was the chair of the department at Texas tech.

[00:11:09] University in Lubbock, Texas. And that's another thing I'd hardly ever heard of. I mean, I've heard of Texas, but Lubbock, Texas, I don't think so. So I I'm going on and on. Right. You're good. I went to Lubbock, Texas. I took my two little girls with me. Um, and we went to Lubbock, Texas. Um, Jim Yates said, I told him that, you know, I really, I really would like to do some art.

[00:11:38] Well, we called it Acoupedic Doreen called listening and spoken language therapy. Aren't competing at that point in time. And I said, you know, I I'd like to start that clinic. I wish. Right out of my master's degree to do clinical supervision and get my CFY year. I was literally 30 minutes ahead of the students that I was [00:12:00] supervising, right.

[00:12:01] In terms of my experience and knowledge, maybe 15 minutes. And that was it so I was supervising diagnostic testing and  was supervising me. And I was just making it up as I went along with my acoupedic clinic. Because all I knew was, Oh, I had, then I did a couple summer courses with Doreen Pollack. Um, so I had some training, but what I did know is that I really wanted to offer that.

[00:12:31] Opportunity to children. Now, this was the day and age. This was way before cochlear implants. This was even just a very beginning of ear level, hearing aids for children with severe to profound hearing loss. We were really still at that time fitting body aids. And most of the time until I learned from Doreen Pollack

[00:12:51] Who were fitting body age with a Y core. That is what one body aid with a split cord going to each year. But Doreen Pollack had [00:13:00] taught me that. No, no, no, no. You need to give the ears, talk about brains. You need to give the ears each year as much information as you can. So you fit two Strong body aids.

[00:13:12] And this was the day of analog technology. It was all about power, power, power, power. So you need power those ears. Those little hair cells are really doing situps by now. And, and so we put and so when I went to Texas tech, um, that's what I did now. I think when I first got in, I don't think audiologists were actually fitting hearing aids yet.

[00:13:37] I'm pretty sure we weren't allowed to, um, I, and so I was, they had to, the families, people had to go to a hearing aid dealer to get the hearing aids. Cause it was unethical for audiologists to recommend and then to actually manage the technology piece. So they then went to a hearing aid dealer and I did have a couple of hearing aid dealers who did fit to body aids [00:14:00] on children.

[00:14:00] Although they thought I was crazy, but Hey, also another body aids sure off, but it also two of them. So, um, that's what we did. And then sometime, and I, I really should, I don't remember all the dates it's about when we could start doing technology ourselves, but then I start, I think it was later that then I was able to that we, not just me, but we were able to fit your level, hearing aids on children.

[00:14:25] So, um, and then also at that time, uh, Jim Yates sponsored me and I'm pretty sure it was that time. Plus I. At a later time too, going to work with Dan Ling for a summer at McGill university. So I then learned more information about listening and spoken language and, um, from, from again, a master and Dan Ling, who gets to work with Dan Lang.

[00:14:51] Oh my goodness. And I think I did several other times when I was in my doctoral program as well. So, um, I had the [00:15:00] clinic there and then that's where a Texas tech, where I met my current husband, Pete, and we, uh, then I decided that I really wanted a doctorate. I need a PhD in how I decided that is that the new chairman of.

[00:15:15] The Texas tech university speech and hearing department said that he recommended that I get a doctorate because by then I was teaching classes. I was now 45 minutes ahead of the students.

[00:15:30] I was teaching, Texas tech did not have a PhD program. So he said, Oh, he said, I'm happy to keep you at Texas tech as long as you want, but I see that you, you really can do more and you can't do more without a PhD. That's going to be your ticket because I see, I like the way you were running this, this is acoupedic clinic.

[00:15:49] I like what you're doing. And um, I think you need to move on. So by then I was married and. Uh, so I thought, well, where should I go? And I [00:16:00] applied to several places and I ended up at Kent state university and my my new husband, Pete Roberts, flexer. I had a PhD in rehab counseling, and he got a faculty position at Kent state.

[00:16:14] Just again, luck, luck, luck. Just as I was applying for a PhD program, there was a faculty position that opened up in this college of education at Kent state. So it was perfect for him. Perfect. It was like, it was written for him. So he got that position and I got another full scholarship for my PhD program.

[00:16:37] And who was at Kent state? Well, it was Ken Berger and Joe Mellon and Don Gans. How, how does one person get so lucky? So now I got to learn from Ken Berger. That was a lot about lip reading, which I was kind of, Hey, I'm doing, I'm not doing lipreading. I'm doing this listening thing, but you still, you know, everyone you're with you learn [00:17:00] so much from, and Berger was brilliant about hearing aid and Don Gans neurophysiology.

[00:17:08] Don Gans ended up being my doctoral dissertation advisor, my doctoral advisor. And he was working with gerbils and, and doing different surgery. He's I, I didn't do the animal thing at all, but we did do a pediatric testing and behavioral testing. So I took a lot of information. I learned from Marion downs and work with Don Gans in testing children with severe disabilities.

[00:17:32] And that's what I did my dissertation on. So you see there's there there's we so much to be learned from every single person you come in contact with. And so there I was at this beautiful place at Kent state learning again from amazing teachers, people who were wonderful in the field, who I did presentations with.

[00:17:54] I wrote articles with, they all mentored me. And back at Kent [00:18:00] at Texas tech and Texas Tech university in Lubbock. I also get some papers with Jim Yates and presentations, everyone mentored me and my broadcast journalism background had me. I was already, I learned how to do presentations. I learned about that.

[00:18:19] And then I had practice practice with wonderful mentors who included me in amazing opportunities that I was just so lucky to be part of. Then I got hired at the university of Akron, um, for my full time position. And I became very good friends with Denise Wray as a speech pathologist. And she and I started an auditory verbal clinic there and we went and we spent, or I went for sure.

[00:18:51] And Denise, I believe she did too. We spent some time with Helen Beebe and Eastern Pennsylvania. Um, Sure. [00:19:00] Um, auditory verbal clinic, um, and learn so much more about how do you do this auditory verbal thing. And guess who was at Helen Beebe, Don Goldberg. Don Goldberg, where it's just, we're just all related.

[00:19:16] Aren't we? Yeah. So we add and guess who was one of my very first babies I worked with Stacy Lim. in fact, we have a whole story about how she had been diagnosed somewhere else, but her parents brought her to Kent state. When I was getting my PhD, this was kind of a little sidebar. And, um, they came to see, not me cause I was a PhD student.

[00:19:46] They came to see one of the real professors, right. And, uh, they, but they got me. So I tested Stacy the way that I learned how to from Marion downs. And I confirmed that yes. [00:20:00] Does have a profound hearing loss. And Betty said, well, we knew she did, but we thought she did, but we needed some more. We needed second and third opinions

[00:20:09] And I said, I don't blame you. I said, you know, but there's so much you can do. And they said, I don't know if there's anything we can do. And I said, well, let me tell you about listening and spoken language. Although we called it acoupedic, you know, we had all these other names for it. But that's what it was.

[00:20:24] And, and I said, you know, I just came out of, I was in Denver just a few years ago with Dorreen Pollack. And, um, I, you're looking around for different possibilities. I suggest you give a call to Doreen Pollack and Charlie Lim. Uh, Stacy's dad said, you're not going to believe this, but I have a business conference scheduled in Denver next week, or the week after he went to visit Doreen Pollack.

[00:20:50] And they made a decision. They were going to do listening and spoken language. They then worked with Helen Bebee and I went with them to the Larry Jared house for [00:21:00] some training with Helen Beebe. And we also are lifelong friends. Right. So now, now I'm at the university of Akron and George Davis. Was the department head then and George Davis supported Denise Wray and I, he gave us time.

[00:21:20] He gave us money to start our auditory verbal clinic. He sent us to, if we wanted to get extra learning, I think he also sent us to, at least for me, again, to do another course with the two or three week course with Dan Ling and George David said, I will send you anywhere. For you to talk about this unique clinic that you have here at the university of Akron, if you and Denise have a paper at any conference, anywhere in the United States, I will send you there.

[00:21:53] And he did. So at these conferences, we met so many people. We networked with people who were [00:22:00] big in the field, other pediatric audiologists, other listening and spoken language specialists. So we continue to fine tune our craft to learn more about how do you do pediatric audiology? How do you do listening and spoken language?

[00:22:16] How do we more precisely fit hearing aids? Because this was before, still, before. Real ear measurements. You know, I travel with all these little screwdrivers in my purse because all that, the hearing aids had trimmer pots. And so you like put the hearing aid on your hearing aid stethoscope. I mean, we did have some, we could, of course do some measurements.

[00:22:36] We did that, but you put a lot of listening and, you know, . And I take a little screwdriver and I'm turning the trimmer pots to try and get a more refined signal based on how I was hearing it. And then, but the thing was being a pediatric audiologist. Is it's, it's a science of course. And it's really an art [00:23:00] and it's a pediatric audiology, I think, is a calling.

[00:23:05] Right? I mean, that's why Carrie, you and I are still so close it. Isn't like, Oh, nice to see you go have a good life, honey. No, we're like. I'm in it with you, I'm in it with you for the long haul. And I have been since the beginning, and that's how I feel with the children I work with now. Not everyone. I mean, people move away, people move on, people go different, different pathways and that's completely fine.

[00:23:30] But so many we stay in touch with because it means everything. It's a calling. It's not a job. I mean, I would go home at night and ponder, what can I do for this child or this family? There's some missing something, something I'm missing. How can we move forward what's or to go home and just say, I need a glass of wine because this, I got the child into the clinic and they're doing [00:24:00] so well.

[00:24:03] It's personal, everything that happens as a pediatric don't you feel that way? Carrie it's like personal. It really is. And I think your point about the, having those important mentors in your life and, and you were definitely one of those mentors in my life, and you talk about the, having those important people and, um, Colorado, like Marion Downs and.

[00:24:26] Christina Yoshinago-Itano and various other people and you were that person for me at the university of Akron when I was there. And I was so fortunate to have you as a professor because your broadcast, journalism really shine through and all that as far as presenting. Um, I think we got excited about learning.

[00:24:53] About pediatric audiology because your passion and your purpose shines through to everybody else that was learning from you. [00:25:00] And I think you shine through to every international and national and local presentation that you do, people learn from you, and you're life long learning. And just you talking about different phases of.

[00:25:17] The terminology that you have used and going from a body aid to bilateral body aids to trim pots and ear level two now, cochlear implants level, hearing aids. It all has to do with lifelong learning. And I think, you know, you talk about at the beginning, Um, the little hair cells are doing pushups all the time because of what really?

[00:25:44] Oh, an amplifying, every single little haircell with a little trimpots that we had to use, because that's all we had at the time, but now you, whatever I think of you and your presentations, I think. Nationally and [00:26:00] internationally people think of you as it's all about the brain. So when you're talking about hearing, you've kind of evolved into it's all about the brain.

[00:26:09] So how did you get this idea of talking about the brain and not about the ears? Oh yeah. Well thank you. Cause this is, uh, an interesting backstory that, um, And we, we in audiology have always, we've had key courses in neurology, right. I neuroscience. So we've always known that the brain was the goal. Right.

[00:26:35] And, but we never talked about the brain. We never talked about the brain as, um, as, as the, as the target, the target was always the ear. And in fact, we talked about even we are training the ear, even auditory training was ear training. No, again, like the little eardrums are moving while they are, [00:27:00] of course, but not like they, they're not volitionally.

[00:27:05] And we, um, So, so we, I Don Gans, who was my major advisor, because he was all about neurology and he, uh, he was thought at the very beginning of auditory brainstem testing, and he built this whole huge, you know, now you have ABR. It wasn't like a little teeny box on your computer sometimes. Well, it was like a whole room full of technology, um, to, to try and do ABR testing.

[00:27:35] So he did a lot of brain talk, but it was all the scientific data. It wasn't the practice one. And then I started reading more about. Um, uh, auditory perception and, um, auditory, um, you know, feedback and, um, also about, um, so you know what I do. So what [00:28:00] am I I'm talking about? We have the brain we have, um, auditory.

[00:28:05] Isn't that funny? I can't find the word that I'm thinking of. It has to do with it's auditory. We're talking about Frank Musiek, auditory, not brain development.

[00:28:20] auditory processing, auditory process. And she has a little bit of downtime, auditory processing. So it was the auditory processing community, like a Gail Chermak, and. Frank Musiek, who really talked about the brain now, they weren't the only one, you know, even back in 1954, where you have Michael Beck and his initials.

[00:28:46] So books that were just amazing. And he talked about, um, central deafness. It was like a processing issue. So all of them, well, we've had conversations about the brain. Um, but we [00:29:00] persistent for the longest time in pretending that the ear was what there stood. In fact, we would say we're doing for speech perception.

[00:29:09] What's the speech perception of your right ear. What's the speech perception of your left ear? Like the ear perceived something, the ear perceives nothing. You know, the ear is the end organ that the sensory organ, the ear that, that received vibratory data from the environment like the eye is the pathway to the brain for optic wavelengths, but the eye doesn't interpret what the wavelengths mean.

[00:29:37] It's the brain that does. And the ear doesn't interpret the meaning of the vibrations. It's the brain that learns the meaning of about vibrations through exposure and practice and language. Um, so really the ear proceeds and nothing, the ear, nothing like the eye, nose and nothing. It's, it's the brain that knows, and that [00:30:00] learns.

[00:30:00] So, um, I, I kept thinking about why, why. See then we get to the, uh, uh, when sometimes children were not wearing their hearing aids or parents, weren't putting hearing aids on their children. And as I've had conversations with parents, I realized, but they didn't understand that. Only purpose of technology is to gain auditory information through this damaged ear doorway, to the brain where knowledge can occur and learning and understanding can occur.

[00:30:36] And without the technology, there is no auditory understanding and auditory learning and it, it came to me and I can't, I'm sure I'm not the only one who thought this way. But it became very clear to me that we need a very clear client patient narrative that I find that the real hearing that occurs is in the [00:31:00] brain.

[00:31:00] That's the purpose of the ear is to get information to the brain, but all the ear and the ear is an amazing organ. It is a phenomenal organ, like it doesn't know anything, right. It receives a vibration. So I found that once parents and teachers understood that if that technology was not fit early, if it was not worn at least 12 hours a day, if there was an auditory enrichment going through the technology to the brain, that child wouldn't know stuff.

[00:31:31] It would be denied language and knowledge and learning. And especially if the family's desired outcome was listening and spoken language. So over time, I guess, years I, I kept refining what this narrative would. Sounds like how we would talk about the sense organs. The six sense organs is doorways of capturing different types of environmental data.

[00:31:56] It's the brain, it's the brain, it's the brain. It's [00:32:00] only the brain that can understand and learn it and know the meaning of that information. And so we audiologists are brain people. Our job is to grow and develop that auditory brain. And the way that grows and develops meant happens, right. By getting information to the brain.

[00:32:20] And if you have a doorway problem, a hearing loss, the only way to get information to the brain is technology. Right. That's the only way. And so, and adults brains too. I have it on good authority. So we can talk about the brain to everyone. If you have someone who's was developed around auditory information, but they're losing their doorway.

[00:32:44] We need to keep that auditory brain engaged. Enriched stimulated active. And that happens through technology. So gradually what's happening is, is, and I'm sure I know I'm not the only one who's [00:33:00] thought about this. I mean, we, we all have that, but I think what I'm happy about is I hear my narrative echoed.

[00:33:08] All over the place. I hear the narrative here. What the brain, brain listening, brain science brain technology. I hear it echoed in and hearing aid companies and different technology companies. I hear other audiologists saying pediatric audiologist, clinical audiologist, rehab, audiologists, more and more.

[00:33:29] Sharing the brain narrative. And I'm thinking, especially now that we audiologists have such a critical role firing up the brain and developing the brain and keeping the brain going for people that we have to make sure that everyone knows that we have a. Critical quality of life, even quantity of life, expansive role, um, in, in working with individuals of all ages with hearing loss.

[00:34:00] [00:34:00] Yeah. And I think, yeah, I always associate it's all about the brain. You know, the doors or the door, the ears are the doorway to the brain. And what growing the brain as your motto, like, I've heard it so many times from you, because that's your international and national platform. And even as a student at the university of Akron, you were talking about the brain at that point in time too, but it's such a great.

[00:34:28] Like you said counseling tool for not just, you know, for parents and for kids, but as you said, adult says, well, um, I know, you know, my whole cochlear implant story. I mean, initially when I got my cochlear implant, it sounded like beeps and chirps. My brain was interpreting that technology as beeps and chirps, but by.

[00:34:52] Putting on the technology and having that doorway opened and keep listening and doing auditory [00:35:00] rehab with Denise Wray and growing. I was actually growing my auditory brain again. And so from an itty bitty, which we want any child. You've got as much access as possible, early on and grow that braiin early on.

[00:35:17] We can still look, grow my brain when we're a little bit older too. So that's, what's so exciting about the brain and how we can. Lifelong learn about different strategies and keep evolving and how we learn and we teach and continue to grow and empower the people that we work with as pediatric and clinical audiologists, no matter what setting you you're kind of in today.

[00:35:46] So, um, yeah, I. I don't know. Is there anything else that you want to share as we kind of wrap up today? I just want to say you have been, and I don't think I showed this at the [00:36:00] beginning, but just about lifelong learning and kind of evolving. I know you knew me from. I want to say I was probably maybe seven or eight.

[00:36:11] I started coming to the university and it was actually another colleague of yours and mine now. Um, Lynn wood, who was,   pediatric audiology at that time and Akron, and she was about to move to the Chicago area and our family needed another place to go. And she said, you have to go see dr. Carol Flexer at the university of Akron.

[00:36:40] So that was how we got plugged in. To my family from that age. And like I said, you been, you were there through my high school years. And then I got to go to the university of Akron for my graduate work. And then you've always been. A mentor [00:37:00] to me, um, a presentation standpoint from a writing standpoint point from just a learning standpoint throughout all of these years.

[00:37:09] And, um, I truly enjoy every wine occasion that we get to have together as well, but I just wanted to plug that in because you've been that lifelong mentor for me. And I really appreciate all of that. No. Well, thank you. And you know, and I've, I learned from you to you from, from every encounter we've had from working with you and your family, seeing how, how you have progressed and, and your journey through, um, through early young childhood and teenage, and then into being a student.

[00:37:48] I mean, I've learned from you every step. By the way. And I just value our friendships just been priceless. And I, I have such fun. We have such fun when we write chapters [00:38:00] together or we write articles together and present together. I mean, it's just been such a pleasure for me to have this sustained relationship and friendship.

[00:38:10] I mean, we are girlfriends as well as colleagues. It's just been wonderful. So thank you, Carrie. Yes. And I just want to say thank you again for being a part of this, empowEAR audiology podcast. I think this was a wonderful conversation and I hope that others will be able to learn from all of this.

[00:38:31] And I hope all of our listeners will download and share this podcast. And. Um, to all of my listeners, thank you for joining us today and please visit our website to get more information that transcript, but today's website for today's podcast will be on the website. And please remember to share with all of your friends and fellow audiologists and people within the field.

[00:38:57] So thank you again for being on this [00:39:00] podcast and everybody have a great day. Thank you, Carrie. Bye. Bye. Bye. This has been a production of the Three C Digital Media Network.

Episode 6: EmpowEAR Audiology - Dr. Gail Whitelaw

[00:00:00] Welcome to episode six of EmpowEAR Audiology with Dr. Carrie Spangler. 

[00:00:16] Welcome to empower your audiology podcast. 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. Thank you for listening, and I hope you will subscribe ask others to listen and leave me a positive review. 

MUSIC 

[00:00:46] Hi everyone. My name is Dr. Carrie Spangler with empowered ideology. I cannot wait for my listeners to hear the next two episodes of empowEAR Audiology. One of the areas that I am most passionate about Both personally and professionally is working with teams who have hearing challenges. Before I introduce our guest for the episodes. 

[00:01:11] I wanted to share a little bit about the background of campUS. So when I was growing up, I did not have the opportunity to meet anyone with hearing loss. I also did not have the chance to directly learn about advocacy, to transition to college and work research tells us that. Social emotional learning and developing skills about self-awareness self-management social awareness and responsible decision-making is critical for lifelong success. 

[00:01:46] In a nutshell, it is important for teens with hearing challenges, to have strong determination skills about their hearing loss to navigate through life. Through a combination of my own [00:02:00] personal experiences and my professional knowledge of need. I am excited to share the campUS experience that I coordinate with dr. 

[00:02:09] Gail Whitelaw. We knew that by creating a safe environment to allow for the same self connections and relationships, we could positively influence a successful transition to life. Campus in a nutshell, campUS is an overnight program for teens with hearing loss held at the Ohio state university where [00:02:35] Dr. Gail Whitelaw work. Counselors; they all have hearing challenges as well, and they provide a strong mentorship as they share their own personal experiences. Keynote presenters. Are inspirational celebrities and their area of expertise, and also have hearing loss. Parallel [00:03:00] to the teen track is a parent and professional track as well. [00:03:05] So come join me and the upcoming episodes. As we dive deeper into the benefit of bringing teams with hearing challenges together for a two day experience. 

MUSIC 

[00:00:37] I cannot wait to share this podcast with all of you today. One of the joys of the podcast is that I get to interview some of my best friends in the field of audiology. And today I have Dr. Gail Whitelaw with me. So Dr. Gail Whitelaw, she is an audiologist. She's an audiology faculty member and clinic director at the department of speech and hearing [00:01:00] science at the Ohio State University in Columbus, Ohio.

[00:01:04] She's interested in many of the boutique areas of audiology, including working with patients with tinnitus, auditory processing disorders, functional hearing losses and pediatrics. And she also teaches in these areas. She's also interested in professional development, specifically leadership education and in clinic education. 

[00:01:27] She's the past president of the Ohio Academy of Audiology, a past president of the American Academy of Audiology, a past chair of the board of governors of the American Board of Audiology. And she is a dear, dear friend of mine. And I'm really excited to have you today. Welcome Gail to the EmpowEAR Audiology podcast. 

[00:01:51] Thank you, Carrie. I feel absolutely the same way and so honored to get to be here and talk about a topic that we love. And I get to talk about a talk topic I love at the same time. It's great. So Gail, I was just trying to think before this podcast tonight, today, how long we've known each other and how we really got connected. 

[00:02:17] Do you want to share. Sure. You know, I think you and I were saying, I think we've known each other for like forever. and I'm quite a bit older than you. So my forever is a little bit different than yours, but you know, you and I had known each other, I think, more peripherally and, we hooked up at a Phonak conference in Las Vegas, where you came to me and said, I have this idea and we need to talk about it. 

[00:02:43] And I was kind of intrigued about what idea you might have and what you were thinking about. And we trucked herself out to the pool in a casino in Las Vegas, which is a terrible place to have to have a meeting, but somebody had to do it and sat and talked about. What I consider [00:03:00] to be one of the best ideas I had heard in a long, long time. 

[00:03:05] And it's turned out to be a passion. I know for both of us. And I tell people it's a life-changing event. And that was thinking about a transition teen camp for, young. People with hearing loss, with hearing challenges who are going to be transitioning to the college, to the work world, whatever they're going to be transitioning to. 

[00:03:24] You had this fantastic idea and you let me come along, on your dream. And since then, I think we've grown so much closer because we get to work closely on this incredible opportunity that. As I said, it's truly been life-changing for me. So, you know, we both have a passion for working with teenagers and, you know, I think a lot of audiologists who like pediatrics, like the little, teeny tiny, cute babies, and when they start crawling and I liked them too, but I think that I really liked the challenge of working with teenagers to watch them grow from [00:04:00] childhood to adolescence, to adults. 

[00:04:03] And see the influence that having great audiology services and great audiology support can have. So I love the fact that you saw that as a vision and a dream, and I have gotten to participate in it for the past eight years. So I know, and I. I agree with you about pediatric audiologists, really liking the little babies and the toddlers and the young ones. 

[00:04:28] And then they roll their eyes. When you tell them that you love working with them teenagers. And I think really what drove me into this was a factthat as a teenager, going and living with hearing loss, I was the one and only, and I didn't want that for other

teens. Who were going into college and, and to the workforce to not have an opportunity to be empowered or have leadership skills and [00:05:00] advocacy skills and self-determination skills that are really important for. 

[00:05:05] For their life success. And I think that's kind of, again, how both of our passions with audiologists really came together to make this campus experience important for the teens. And so you mentioned, yes, we've been doing this for eight years, right. And, so. What do you think are some of the benefits of having our own campus? 

[00:05:31] Well, maybe we should just start with, kind of, how did we, how would we get started? I mean, I know we talked about it and at the pool, but what do you think some of the components of making campus important for a success would be. Well, you know, I think first of all, it's a logistical issue of finding a place that's going to be comfortable to comfortably house. 

[00:05:54]everybody that we want to have come, you know, our campers or students that come our [00:06:00] counselors, you and me. parents and how we get them there because, you know, I, I do think one of the strengths of the program that we've created has been it's 

phenomenal for teens, but we hear as much phenomenal from parents in terms of their interaction. 

[00:06:19] And for some of them they're, they're kind of a one, and only, also they haven't had a lot of input from other parents. You know, I think it's funny because every year the same question comes up and I'll get back to your original question. But the same question comes up to say, how do you get your kids to wake up in the morning when they have a hearing loss? 

[00:06:37] Because I go in and wake them up every day. And all the parents who have older kids are college students. Like, no, no, no. That's. Not what we do. We're going to shake awake and they've never heard of that. And it may, it's made me think as an audiologist, what more information we need to share, but I think there's a logistical component. 

[00:06:55] And then there's the component of how do we develop a place where, what you [00:07:00] talked about, where leadership can be, highlighted. Where our campers have the opportunity to work with counselors who have walked their walk. Every one of our counselors has, has walk their walk as a team with hearing loss. you know, I think that that's a really important aspect of it because I look at how much they bond to the counselors each year. 

[00:07:23] And I think for a lot of these young people, they've never met anybody. Like you who's so successful or like our counselor. who are incredible. And I also think that the fact that we've had keynote speakers who have been just exceptional in so many ways, you know, we've had everything from comedians to musicians, to, TV personalities, to miss San Antonio. 

[00:07:53] And every one of them brings their unique story to it. But I'm so glad that we decided to do it that [00:08:00] way. because I think that it really highlights that hearing loss doesn't define people. And I think for a lot of kids, If they've not known somebody like that,

it really, in that same way, they don't really know that because they may be going through what typical teenagers go through. 

[00:08:19] And, maybe they're angry. Maybe they don't have anybody to talk to. So I think those connections, those networks have been just critical, Carrie, and then the parent part for me. Has really been beneficial because it's allowed us to bring graduate students from a 

number of graduate programs in Ohio, not just Ohio state, even though it's on the Ohio state campus, to come in and actually hear what parents. 

[00:08:46] And their kids have to say. And, you know, I can't say those things as eloquently. And I remember the one year that we had a, we have a parent reception and the kids are all off having a great time at the [00:09:00] recreation center and doing fun games. And the parents are sitting around drinking beer and wine and chatting each other up. 

[00:09:07] And the one year when I usually asked, lasts like an hour and a half or two hours, and the one year were like three and a half hours into it and you had texted me and I was like, Yeah, we're still here. We're still, parents are still asking questions. And one of the parents went around and said to our students, I want you to be better audiologists than my child has had. 

[00:09:26] What have you learned today that you will take with you and integrate into your professional practice? And I have to say that was really powerful to me and listening to what the students, my graduate students, our graduate students had to say was incredibly powerful to me. And again, these things are career changing for me. 

[00:09:46] And I've been an audiologist for 36 years, and I'm still learning new things from these folks. So, you know, I think the main components are, how do we get a comfortable logistical environment for them, but more importantly, how do we bring in the right [00:10:00] people and the right mix of people? And do things that are exciting and maybe the students haven't seen before, maybe the parents haven't seen before and that opportunity to create such a healthy, I think, a happy network too. 

[00:10:14] So those are the things I would say, or have been really successful for us. Yeah, I agree. And I think maybe what I stepped back for a second for listeners, and just talk a little bit about. The schedule of campus. There's so much, I think, behind the scene that you and I do throughout the year, but just so our listeners can understand. 

[00:10:39] out program, but maybe get some other ideas that might fit where they might be in their part of the country or they're stater the location. So do you want to share just a little bit about maybe the agenda or how they get there and then at the end. Sure. you know, I think that [00:11:00] one of the things, as I start to think about this is when people are listening, they're gonna be like, that's a really short period of time. 

[00:11:06] It's a really short but intense period of time. So we run campus on Friday and Saturday. we start kind of a half day, a little bit less than a half day on Friday, but we bring our counselors the day before. And part of that is if you're going to run a program like this and you run it on, say a college campus or, through a school you may have to do protecting minors training.

[00:11:30] And so that's something that you need to be really aware of that we became very aware of, but the becoming aware of it has been fabulous from my perspective, because it's. Allowed us to do some things on the Ohio state campus. And so we have our kids move into the dorm. parents do not stay in the dorm. 

[00:11:50] They stay somewhere else and there's beautiful places to stay around and. If they live in Columbus or the area, they can stay at home if they want. But I think that kind [00:12:00] of defeats their purpose because I think it's lovely when they get to spend a little more time. Sometimes they go out to dinner together and stuff, but the day starts with our campers going on, meeting each other, talking about why they're there. 

[00:12:12]Going out and doing a scavenger hunt. And we're very fortunate that we have the opportunity to, to work with our Americans with disabilities act office, our ADA office and our director of the ADA at Ohio state is Scott Lisner. And Scott has embraced everything related to campus for us. I think it's been great Carrie, because we just have to ask and it happens, We, you know, obviously if you're looking at something like this, we want to recruit a diverse group of kids, whoever wants to come. 

[00:12:45] And so the diversity includes communication style. It includes, some are implant wears, some are hearing aid where some are not any wearers of anything. They don't want those things anymore. and they may be going through that. so [00:13:00] we have them do a scavenger hunt and check out campus. And I think they always really enjoy that. 

[00:13:06] And then, they eat dinner and one of the residence hall dining halls, and I am always kind of, Kind of entertained by that because of the fact that, I think for a lot of kids, they've never been on a college campus and I always tell people we're not trying to recruit them to Ohio state. Although a lot of them do become Ohio state Buckeyes. 

[00:13:26] And that's fantastic because they have knowledge of the campus, but we want them to be successful no matter what they're going to do with college, isn't the way they're going, whatever. That's fine. But I always think it's fun for them to get to eat in the dining hall, especially when it's all you can eat. 

[00:13:41] I remember our first year I was so worried because that kid who ate all the cereal, he was just eating like bowl after bowl or fruit loops. And he's like, this is the greatest place on the face of the earth. You get to eat all this food. And I was like, Oh my gosh, he's going to get sick. And his moms, dad are gonna be like, what did you feed him for dinner? 

[00:13:59] I'm like, Oh look, [00:14:00] 42 bowls of fruit loops. You know? that was a fun year. And then we split up at dinner time. Where Carrie, as you know, you take the kids and you guys go and do some recreational activities, and that's a great time for bonding. and I'll, I'll tell a story that really stuck out to me in that bonding experience. 

[00:14:20] And then I take the parents. And any professionals who want to come and join us. And we do a, like a parent, I guess, open house kind of thing. And so those are two parallel tracks and I think they're both equally important. I think it's great that the kids have the opportunity to go and do some cool stuff, and interact, you know, with playing Dodge ball

or, you know, basketball, volleyball, or whatever they're doing, or they're just sitting around talking. 

[00:14:48] It's really great. We send the parents off on their merry way and you take the kids back to the residence hall, back to the dorm and they do a lot of bonding there. they [00:15:00] do, some getting to know you games and what I'm always impressed with. It's how quickly those experiences turn from kind of surface-y stuff like let's throw a beach ball and has words on it and describe something. 

[00:15:13] That's a great activity, but they get really deep really quickly. And, I'm always amazed by that. And I wouldn't have believed that. If I hadn't witnessed it, but I think it's just, you know, it's a Testament to you and how we've set this up. And it's a Testament to the kids that come and they're so hungry for wanting to participate. 

[00:15:38] And so then they go to bed, and then they wake up the next morning, nice and early and have breakfast. And then they go on their merry way. The kids go on their merry way to, doing activities on campus. Again, some more exploring, you know, what is, if you're going to be a college student, what does it look like to be in a lecture hall that holds 400 people? 

[00:16:00] [00:16:00] That's very different than most people's high schools. You know, I can't think of any high school. It has a 400 person Teaching room, an auditorium, perhaps, but not a room where there's teaching. we usually have whoever our keynote speaker is, and these are carefully selected by Carrie and me. And, oftentimes we have been fortunate to get them sponsored by a manufacturer. 

[00:16:22]so they're, they're happy to have them come, but our keynote speakers like to come and play and have fun with our kids. To hang out with the campers, with the teenagers and have a great time while all that's going on. I usually spend my time in the law school at Ohio state, where we run the parent and professional group and we tend to bring in things, that might look at something like hearing dogs or something like, I know, how do you go about getting, you know, what used to be called BVR, but now it's called opportunities for Ohioans with disabilities. 

[00:16:56] What are those opportunities there? People, parents [00:17:00] always want to talk about hearing aid technology. Scott Lissner always does a great thing about when you're going to look at colleges. What might you want to ask about. When you're going to look at a college to see if it's friendly for the kinds of issues. 

[00:17:13] And we know that they all should be friendly. That shouldn't even be a question, but we also know that some places are more diverse or broad than others and easier to work with. So, we do that then, the campers come over and meet the parents and we have a big lunch together. we can never order the right amount of food. 

[00:17:33] So if you're thinking about planning something like this order, my best advice to you is order less food than you really need. Because you always have a lot of leftover food. The kids love it and they think it's really fun. And we've ordered fun things like Chipotle and city barbecue. And they've had a great time with that.

[00:17:52] And then we go back and I do need to go take a step back. one of the highlights for parents. Is the [00:18:00] parent panel. we have parents of, of former campers. We've had Carrie's parents a number of times, and I think it's really nice for the parents to have somebody that they can look up to and say, you've walked this walk because those of you that have had kids who go off to college, you know, I have a 24 year old daughter and. 

[00:18:20] I work in a university. I know what it's like to be in a university, but it's still a very terrifying thing for a lot of parents and parents are having things like, how can I trust that they'll actually have fire alarms that work? How can I trust that my daughters or sons roommate is going to be helpful? 

[00:18:38] If there's an emergency? How can I trust my kids going to get up with that shake away thing? You know, you know, all those questions. And I've been so impressed with our parent panel and the only thing that ever tops it for me is in the afternoon, our keynote speakers speak. And then we have our counselors on a panel and I always find it. 

[00:18:59] And maybe it's [00:19:00] because. We know them we're vested in them, but I always find it the most amazing thing to hear these young people who are so accomplished and accomplished across a range of things are not all great students. Some of them are great athletes. Some of them are great workers and they love their jobs and it doesn't matter what they're great at. 

[00:19:19] They're great human beings and great role models. And so I think that that's always something for me and the kids always love the panels. But the parents love it too, because I think for a lot of them, You, and I have heard so many times Carrie, that parents still have all these questions that we as audiologists, haven't always answered. 

[00:19:40] And sometimes they're things in Ohio school for the deaf did a study a number of years ago. And one of the things that parents of Teenagers were still asking us, why does my child have hearing loss? What kind of hearing loss do they have? I was like blown away by this because I assume we all do such a great job and I'm not [00:20:00] being, I'm not trying to be anybody's critic because some of those kids are my kids. 

[00:20:04] You know, they're kids that I saw. I thought it was the most clear communicator on the face of the earth and it didn't work out that way. So I think it's a really great opportunity for us to be reminded as professionals. But for those parents and for the kids to see, Hey, look at the success that's coming your way. 

[00:20:21] And here are the things that I've done to work for me. How can we make that work for you? and not every suggestion obviously works for everybody. And at the end of that, Almost two days. I think it's really an emotional time. you know, you and I have had so many, I mean, I think we can talk about, we could talk all night about positives that have come out of this. 

[00:20:45] It always changes me every year. We've done campUS. It changes me in such incredible ways. And I think it changes the campers that we work with. And I think it changes the parents and it changes professionals who come. And [00:21:00] I think it's just an

amazing experience to see people bonding over something that gives them confidence and better. 

[00:21:05] Self-esteem. Can I go on about one more story? A couple of years ago, we had a comedian who was fantastic. And, I thought he did such a great job with us. And, so there's two parts of the story. The first is he came, he was a keynote speaker. He had been on America's Got talent. he's hysterical. He had clean humor and he made a lot of jokes about his own hearing because he has a hearing loss and he stopped Carrie and I were sitting close to each other. 

[00:21:37] You and I were sitting close to each other. He stopped. And he said, when I was in school, I needed you guys. I needed this campUS thing because I didn't want to wear my hearing aids. And I was a one and only, and he talked about all of that and I thought, wow, for an adult, who's really accomplished to still think back on. 

[00:21:58] If I had had this, how much it would have [00:22:00] helped me, that would have been fantastic. So he wanted us to come to see a show at the funny bone in Columbus. He was performing on Sunday night. So I went with a couple of our counselors and, He was, he did a really great, he was hysterical and he did a great bit, and we were going to go meet him in the, in the foyer when he was done. 

[00:22:20] And there was a young girl that was there, maybe about 14, 15, and I thought he had to be over 18 to get in that place. So I was kind of shocked she was there, but I noticed she was wearing hearing aids. And I was kind of walking right behind she and her mom and dad. And she said to her mom, he was hysterical. 

[00:22:36] And he said a lot of things that I wanted to say. But sometimes when people say those things, they're making fun of people with hearing loss. And I don't want to be made fun of, I just want somebody to get me. And when I was telling him this, I said, overheard this conversation, you have to hear it. He got teary. 

[00:22:52] And he said, you know, That's what I want to hear. That's what I want to represent. So I think that those have [00:23:00] been such incredible opportunities that I've been given through this program and to learn as an audiologist and to use that skill, not just at campUS, but year round with everybody that I see. 

[00:23:12] Yeah, no, I agree. A hundred percent. It's just the makeup of the different aspects of the program really fit together like a puzzle and really impact on different levels, different people who actually have an opportunity to be a part of it. And I just wanted to add, so obviously all of our campers had hearing loss of some degree or. 

[00:23:35]way, and the usually sophomore, juniors and seniors, they just graduated from high school. So that's kind of the population of campers, but I just wanted to add that one of the revelations for me when we started this, that I wasn't expecting was the impact that it had on a counselor. So I know that they are all about [00:24:00] counselors. 

[00:24:00] One of the criteria to be a counselor for campus is to have a hearing loss and you can have any degree of hearing loss. And some of them were cochlear implant users. Some

of them were hearing aid users, some of them used American sign language. So we had kind of a mix of, of different, counselors and. As someone who was kind of in charge of mentoring, the counselors as an individual with hearing loss. 

[00:24:26]I got so much out of being able to mentor the counselors and some of our counselors had never had the opportunity to meet others who had hearing loss. And they certainly didn't have the opportunity to mentor anyone with hearing loss and. For me, I think one of the greatest joys, or I guess I want to, I don't want to call it a side effect of campus, but something I wasn't expecting was how much growth that these counselors had in themselves. 

[00:24:56] And just being more, I [00:25:00] I guess, motivated and unsure of who they were, because they were able to share their own story and their own struggles and their own. Of what they've overcome in their life. And I think by storytelling and sharing, you empower yourself in such a, a different way that you don't realize. 

[00:25:21] And at the same time, they were being able to share their stories with these young teenagers. And they were so impressionable with all of our campers. So I just had to share that because I know that was just something. of campUS. I get so much joy out of when we get to choose a camp or a counselor that we, cause that's the one thing we are able to choose. 

[00:25:46]And how much growth they've had. And I've just gotten to know, I still keep in contact with all of our counselors on some level, and they have just grown into incredible young adults and in the professions that they have chosen. [00:26:00] So add on to that, but I think it's so funny is that. So many of our counselors have been audiologists or audiology students, you know, young audiologists or, you know, in an AuD program. 

[00:26:12] And I think, I mean, several of them have said to me, I remember a couple years ago I took a couple of them to the airport. We had dinner at the airport, they were flying out and they were both audiology students and talked about their own journeys and how this would make them more confident about sharing with other people because of the feedback they got. 

[00:26:31] But also. More aware of teenagers, because when they might've needed an audiologist, the most. Some, some of us might not have loved them the most. They were, my might've been the less, the least lovable of anybody that, you know, at that point in time in their, in their childhoods. And they were talking about their desire to work with this population and, you know, how it changed them. 

[00:26:56] And I totally agree with you. And I always tell people we're not trying to [00:27:00] create Ohio state Buckeyes, and we're not trying to create audiologists. But I think for some of our campers, they've never thought about, you know, audiology would, might be a fantastic career for them and there's a million other fantastic careers. 

[00:27:13]and so, you know, giving them exposure to people who love what they do, I think is just such a really important aspect of this too. I agree. And then you said too, and I wanted

to add this in because we, I think what, one of the great things that makes our partnership so great is that you had a university. 

[00:27:33] So you had this facility, first of all, plus you have great. AuD students and speech, language pathology students within your own clinic that want to volunteer. And I think they get so much out of it. And then me on the other side, being in the schools as an educational audiologist, having a network of people within our state and neighboring States, because 

we've actually opened it up to neighboring States [00:28:00] to recruit campers 

[00:28:02] And I think, maybe we should talk a little bit about that because I know people say, well, how do you get people to come? Right? Especially teenagers, teenagers don't want to step out of the comfort zone. And they may not even want to admit at this point in their life that they have a hearing loss. And why would they, they want to go to a camp for it. 

[00:28:23] But students are teens with hearing loss. So. Any thoughts about recruitment and for people who might be thinking about starting a program, Yeah, I think that reaching out, as you said to educational audiologists, to children's hospitals to clinics, I think are great places. I think our partnership with Hands and Voices has been really strong and that's really helped us, you know, find some kids that we might not have found otherwise. 

[00:28:51]and I agree with you. I think, I mean, I think about I, one of our former campers who I think. Really didn't want to come. [00:29:00] And his mom kind of said, you need to go. And he was, he, he did campus on his own terms, but he got so much out of it. And he just told me recently, that he. Really really thought that those days were so precious to him 

because he hadn't had been around a lot of kids with hearing loss. 

[00:29:21] And so I think it's sometimes parents knowing better. And we all know that when you're a teenager, your parents don't know better in your eyes. They're not very smart. And they don't know a lot of things, but I think that we've had some persuasive parents. And I think we've also had some persuasive campers, you know, campers have posted things. 

[00:29:39] We have a Facebook group, campers have posted on Facebook. you and I have a book chapter. Yeah. In, in the Flexer I'm going to miss up. Yes. Of all the names. Let's see. It's the. Madell, Wolfe, Shaffer book book. I think it's one of the only book chapters on teenagers with hearing loss. [00:30:00] And, we have some things in there that are quotes from, from campers. 

[00:30:04] And it's really easy to say I had this experience. You should come and have fun too. I also think that one of the things that works for us, and I said, it's a short time. That short time is a really good thing, because if you come and you really despise it, you're not going to be there for a long time. I don't think we've had anybody ever despise it, but you know, it's a relatively short time to take a risk and that's worked really well to put your foot in and say, and I think we've had so many people go, I wish we could stay here all week or can't we stay longer. 

[00:30:37] So I think that that's a real big benefit to it. And just keeping that network open, you know, I think that we've had great success with people who were like, so when is

campUS going to be next year, that's educational audiologist, or pediatric audiologists or former campers, you know, what are we having? 

[00:30:53] What are we doing it? And so I think that's a really. You know, word of mouth has been great, but [00:31:00] also I think the campers and the counselors speak for themselves, they are the ones that are probably our best recruiting tools. Right? Yeah. I'll never forget. and I, the, the camper that is that, you know, book chapter who her mom had said, you know, she would have never said anything in public about her hearing loss to anybody. 

[00:31:26] Her age or her friends or whatever. And her mom said after that experience she posted on her Instagram account, how. awesome her experience. And that was kind of that first time she stepped outside of her own shell in order to just say to all of her friends on Instagram, that this was the greatest experience ever. 

[00:31:48] And this is a part of who I am and it's, it's great. It was empowering for her, I think, to kind of be able to say that out loud. Totally agree and [00:32:00] that's, and let's face it. We all know this is not an easy age to come out with a lot of those kinds of comments or ideas because fitting in is such a big deal. 

[00:32:09] And I think, you know, one of the things I've learned a ton about and part of it is because we researched a book chapter together, but that the age and stage of. Adolescents and young adults is probably one of the most tumultuous in our lives, more so even than, you know, infancy to toddler and as much as we do love those kids. 

[00:32:32]I think that it's really easy to overlook the changes that the physical changes, the psychological changes, all, all of it, and it's hard enough being a teenager. And then to add on something that you might not want to share with other people to get that confidence, because, you know, you've brought up advocacy at the very beginning of this, Carrie. 

[00:32:52]I think that becoming a good self advocate is one of the best things that we can help people do. you know, they may be afraid they may [00:33:00] be afraid of other people's reactions. And when they see, I mean, you know, one of my favorite stories of all times wasn't related to campUS, it was related to a research study that one of our. 

[00:33:08]audiology students. And I did, looking at teenagers and hearing loss and kind of what technology they were looking for. And this was like eight years, 10 years ago. And one of our, we had a group of a focus group of all young men and, you know, and we had one young woman in the group. And I knew the young woman's mother very well. 

[00:33:27] And we, we met on a Saturday and the manufacturer we were working on what this was, videotaping them and all the guys left with their parents and stuff. And the mom came back in with her daughter and the daughter said to me, I have to tell you something. I never knew that guys with hearing loss could be hot. 

[00:33:46] All those guys were hot. And I said to her, why would you think that she said, because you know, having a hearing loss is kind geeky of thing. I said, is that how you think of yourself? And she said, yeah, kind of. She said, but today was different. [00:34:00] And I think every opportunity that we can give people to see themselves in a light that reflects

that maybe a little differently than they've ever reflected themselves is, is such a positive one. 

[00:34:11] And I take that away from campus every year of. You know how great it is. Like you said, to be able to meet somebody and, really feels strongly about developing a relationship and a network with them. And now you've got the confidence to go out and talk about this. Right. Fantastic. It is. And then the fact that. 

[00:34:30] At least the Campers that I still kind of keep in touch with. They meet for the first time, like you said, you know, they're together for a 24 hour period and they become the best of friends. So, and they meet up afterwards and they're connected on social media and that they cannot wait to see each other again. 

[00:34:51] So it's just amazing how a 24 hour period and bringing. Together teens who have this similar one, [00:35:00] similar connection can blossom into something of lifelong friendship that leads to this. Leadership and advocacy, and just really empowering these students to, I think, these campers, but so listen to the side one, create one of these. 

[00:35:20] Okay. 

[00:35:27] They said, well, how can you afford this? Like, we, we want to do something like this, but we didn't have no money. I jokingly call you and me the two broke girls. because we're always looking for, for financial aid and you know, part of it is. Your connections with Quota club and so grateful to the Quota for, for helping us out for seeing the value of this for tying it into their mission. 

[00:35:54]you know, for you being involved in Quota club, I think that's given us a great start. For us going and [00:36:00] talking to manufacturers about our passions about this and why it's important. You know, one of the things I didn't mention is every year Phonak's sends us a box of equipment because a lot of these kids stopped wearing, DM technology when they were little kids and they didn't, you know, they, they. 

[00:36:17] They didn't like it anymore. And now they didn't know, things have changed so much and they're so much better now. I think that we've been lucky with manufacturers supporting us. We have parents say to us, and it's not a lot of money, but we have parents say to us, you know, let me contribute. We have families pay $25 to secure a space. 

[00:36:37] And if the kid shows up, we give them their $25 back. And most of the parents are like here to keep the 25 bucks. You know, it was worth way more than that. And, you know, I think if I were going to start this again from scratch, or maybe in our ninth year, we might want to look at setting up a, you know, a not-for-profit or a, you know, kind of, five Oh three, experience so that we can fund [00:37:00] this a little bit differently, but we've been very, very fortunate. 

[00:37:02] And I think the thing that you and I both value, is having access. And I would love for us to have more access, but kids have never really paid to have to come to campus. We've covered all of our expenses. We have gotten some donations, student academies of audiology, both at NOAC and at Ohio state have been very generous with their.

[00:37:24]resources to us over the years. And so I think we've really been able to do a lot and we're pretty, you and I are pretty frugal too, so we're yeah, good deal. Right? Yeah. We've gotten some good deals on stuff. And, the university, we, we work to minimize our costs there and, and ha, and I mentioned, Scott Lissner earlier as our ADA coordinator. 

[00:37:47]if you can get services like captioning donated or. interpreters donated. that's an amazing opportunity. And I also think it's interesting because interpreters always say to us, [00:38:00] wow, this was such a neat experience for us. This was so changing for us. And, you know, I think that they kind of fight over getting to come to the campUS. 

[00:38:10] If they, you know, if they've interpreted for us one time and they're coming back, they're like, what is that going to be next year? We want to sign up. Yup. I think that's a really cool thing. So we've been able to fund it based on our own grit, determination, and a lot of generosity from a lot of really incredible people that are in our field and outside of our field. 

[00:38:29] Yeah, no, I agree. And I think every year grows and people know more about it, so they're more willing to help us out financially so that we can continue to provide this opportunity for the students in the campers and the counselors and the parents and everybody involved in this opportunity or this event. 

[00:38:53] So what do you think? I think we should end up with, you know, if somebody was. Thinking of [00:39:00] starting a teen program of any kind. I mean, what do you think some of the big advice or components would be the main components of the program? I think we probably hit on them, but just to kind of review is finding a logistical situation. 

[00:39:19] That facilitates people coming together comfortably and having some fun activities to do. So I could even see, like at a state park lodge, you could do something like this. university campuses have a lot of cool stuff like recreation centers. And, you know, I think that that's a neat thing that. 

[00:39:36] You know, kids can get together and have fun. It's not just sitting, listening to lectures all day long, which I think some of them think that's what this is going to be and really interact on a lot of space. I think having a great group of volunteers is really fantastic. You know, I look at our, our ratio of. 

[00:39:55] Counselors and volunteers to campers and they get a lot of [00:40:00] attention and I think that's appropriate. you know, you mentioned about the AuD and speech pathology students that we have. if I were creating a program like this and I wasn't associated with the university, I would get myself associated with the university because. 

[00:40:13] This is so important for AuD students and SLP students, to be able to see this in action. And they're going to be some of your best, like people, you know, one of our AuD students who's back, he's finishing his PhD. Now. I said to him, jokingly that. I didn't know how we existed last year without him, because he's been such a stalwart for us. 

[00:40:35] So, you know, running and getting bottles of water. If you need something like that, having somebody who can take on those roles and counselors is just critical to find, you

know, if, if you don't know young people. With hearing loss at my service counselors, it's very easy to find them because I think they have a passion for wanting to do this, as you said, and then, you know, finding the right group of campers, reaching out to [00:41:00] kids, I would love to see us do what I said this or already. 

[00:41:03] I would love to see us do more outreach. We have an educational audiologist in Ohio who said to us. Our kids can't come because their families couldn't drive from where we are to Columbus. They couldn't afford to do that. And you and I have talked about, you 

know, how might we open that up to getting gas cards or, you know, providing overnight accommodations just for them in a different dorm. 

[00:41:23] Cause they can't stay with the kids. you know, what might we do? How might we fund that? So I guess I would always also look at diversity. Not just in terms of device or technology or communication, but in every way that you can, so that we could. So you can impact as many lives as possible. those would probably be the key things that I would think about having somebody fun. 

[00:41:46] If you're going to do a camp like this, having somebody fun as a keynote speaker. And one of the things that surprised me is how many people are out there that are in our world. That, you know, have hearing loss or hearing, [00:42:00] challenges that are some kind of person that you'd be interested in. You know, one of our former keynote speakers is on the Pittsburgh news. 

[00:42:07] She was a former miss Pennsylvania. And, she just posted this incredible thing last week about. She's a cochlear implant user and how masks have been terrible for her. And so she did all this research on masks that was shown on Pittsburgh television that we posted because we wanted people to see Elena. 

[00:42:26] But, I think it's amazing that those people are so motivational and exist and are also tied into campUS that they see this as. So that's a great thing for them to be involved in. So if you're looking for people reaching out is pretty easy because I think people want to be involved in your mission. 

[00:42:46] It's not as difficult. I shouldn't say that. Cause I think we put a lot of work into this, but it's not as difficult as people seem to think it is that it's an easy mission to sell and it's an easy, it's easy to be involved with it. And if you, if [00:43:00] you're involved once. I mean, I've had students, former students say to me, I missed that. 

[00:43:04] And I'm always like, you know, you can come back as a volunteer. I don't care. I'm happy to have you, if you're in the area or you want to come in for the weekend, come please come. So I think that it's an easy sell and it's just finding the right people to help you do work with the cell and reaching out. 

[00:43:22] Right. And I think like what you said before the, we put a lot of time and energy and effort into it, but what we get out of it is so much more than what we put into it. And like you said, every year, I guess I get renewed on. Being an audiologist and being in the profession that we're in, because I learned so much from everybody involved that I just love what I do even more, every single year we do it.

[00:43:56] We make a great team. We do. And I so [00:44:00] appreciate, you know, like I said, at the beginning of this, your dream and me getting to be part of that. And, it's, I felt very sad this year when we didn't get to do it in person. And I'm just, you know, I'm hopes and prayers for next year. That will be all back together in person because, I really was sad in 

June because in June when we weren't that usually it's the second weekend in June that we do it. 

[00:44:28] And I was like, Oh, I should be at Ohio state late now. In the dorm, right? We couldn't, like you said, hopefully in 2021, we will be back to the ninth year campus. And I just want to thank you Gail, for being a part of this empowEAR audiology podcast. And I just hope all of our listeners who tuned in today. Well, Think about supporting [00:45:00] teams who have hearing challenges in one way or another. 

[00:45:03] So whether it's a one day thing, whether it's a two hour thing, whether it's an overnight adventure anyway, so that these teens can meet others, they can gain. Leadership skills and advocacy skills, and just really empower themselves to adventure into adulthood. So again, thank you all for being on today. 

[00:45:28] And it was, I always love our conversation. All the time. Great to talk to you, Carrie, thank you for the invitation and, hope that people really enjoy hearing about what we're passionate about. So me too. Thank you. You're welcome. This has been a production of the three C digital media network. [00:46:00]

Episode 7: EmpowEAR Audiology - Dr. Gail Whitelaw & Dr. Katie Colborn

17:03:45 Welcome to the empowerEAR audiology podcast. My name is Dr. Carrie Spangler and I am your host, I am a passionate audiologist with a lifelong journey of living with you and challenges in this vibrant hearing world.

17:03:59 Thank you for listening and I hope you will subscribe invite others to listen and leave me a positive review.

17:04:07 Today, I'm really excited to have two different people on the podcast today, because we are going to be continuing a conversation about campUS, which I have a passion for working with teens who have hearing loss, and in the last episode, I talked with

17:04:26 Dr. Gail Whitelaw, the CO coordinator of the campus program, and we talked about our passion of developing the program and sustaining the program, and today I am excited because I have both a counselor and a previous camper, who was going to be a counselor,

17:04:47 but because of COVID was unable to on the podcast today so I am going to let each of them give a little introduction, just who they are and where they're at right now and as we get through the podcast are going to learn a lot more about the incredible

17:05:06 ladies so I have Dr Katie Colburn, and this podcast and I also have Audrey Susz on the podcast as well. So I'm going to let Dr. Colburn introduce herself, Katie if you want to give a little background about yourself and then we'll let Audrey.

17:05:25 Sure. So, as Dr Spangler said I'm Dr. Katie Colborn, I recently graduated in May with my doctorate degree in audiology from the northeast Ohio AuD Consortium, little bit of a handful but basically it's just the consortium with Kent Akron and Cleveland Clinic

17:05:54 and then upon graduation I was actually hired at the Cleveland Clinic, as the newest pediatric audiologists, so just taking the program and kind of expanding it out using my knowledge of my own personal experience with hearing loss as well as everything

17:05:57 that Dr Spangler and all of my other mentors have taught me. Well thank you thank you for being on today we're so excited to have you and Audrey, can you tell a little bit about yourself too.

17:06:09 Yes, of course. So as Dr Spangler said my name is Audrey Susz. I am a sophomore at The Ohio State University.

17:06:18 I am a psychology major and I also have a double minor in Speech and Hearing Sciences and Disability Studies. I'm not quite sure what I want to do yet my future I somehow want to integrate all three of those subjects into a job, but I'm still trying to

17:06:32 figure out, you know through different resources and different classes what exactly would be best for me. And yeah, good yeah so we have a buckeye on the call today to which is exciting.

17:06:46 So I thought we would just kind of go back a little bit and just kind of share how we know each other how we kind of met each other so I don't know, Katie Do you remember how we met.

17:07:00 Yeah, so it was my second year in grad school, and I was doing a rotation and the Kent clinic, and they told me that I would actually be working with an educational audiologist that day.

17:07:17 I'm hoping with some add screens or auditory processing disorder evaluation, and they said you know you might like this one because she actually has hearing loss too and I was like, Yes, finally somebody else that has kind of like been through my journey,

17:07:27 I can kind of help guide me with like everything else that I have going on so it was very distinct memory.

17:07:34 and can kind of help guide me with like everything else that I have going on so it was very distinct memory. I have I completely remember meeting you that day, because as soon as you told me that you had hearing loss. I think we were in the developing

17:07:44 stages of planning campUS for that. Yeah, and I had already known you for maybe an hour, and I was like she would be a perfect counselor for campUS and you jumped on board which is really exciting.

17:08:02 And you had a lot of other things going on too but we don't have talked about all that but you were starting a family you were to school you had lots of, lots of excitement going on that year.

17:08:18 And then Audrey How did we meet.

17:08:22 So I was really young when I met you I believe I was in like third or fourth grade when you performed a functional listening  evaluation for me, because you were my educational audiologist and worked hand in hand with my intervention specialist, Sandy Proccacio

which I still work with very closely to this day.

17:08:39 But I really got to know you because of your Hit It program, which stands for hearing impaired teams interacting together, and I started going around.

17:08:49 I think high school, and I really got to know you very well because you were such an important part of that program and you made me really learn a lot about advocacy and talking with other people that also had a hearing loss, and ever since then we've

17:09:02 And ever since me just been super close that I was so glad that you joined that you joined us for the Hit IT program because you were such an incredible mentor for all the middle school kids and all the new people who decided to come or students that decided to come.

17:09:20 So it kind of goes hand in hand with the campUS program as well.

17:09:24 But before we get too far into the campUS program.

17:09:29 Do you guys want to share just a little bit about your own hearing journey and, kind of, you know, when you were diagnosed and what kind of technology, you use right now.

17:09:41 So Katie want to start.  Sure, Um, so it's kind of complicated story with me. I grew up with Big D def grandparents who signed only and they don't use any amplification.

17:09:53 So I learned how to sign from very very early age. Actually, before I started speaking I was signing. And then when I was probably in about third grade my younger sister was diagnosed with hearing loss, and got hearing aids as well.

17:10:08 And then I failed a school screening and high school is my freshman year, and they decided to send me to her audiologist, they didn't believe it at first, the numerous audiograms on me and figured out that I actually have something called EVA or and enlarged

17:10:23 vestibular aqueduct which is the same thing My sister has, which believe it or not, is not hereditary, my grandparents.

17:10:32 So, after that, they sent me with my first pair of hearing aids. I was a little reluctant to wear them didn't start consistently wearing them until grad school when I got a new pair that streams on my iPhone, because who doesn't want to do that.

17:10:47 And then you know just from there I started wearing to hearing needs right now so it's been a pretty crazy journey but I wouldn't trade it.

17:10:58 Oh good yeah and you add so much to that campUS experience because not a lot of teenagers really want to wear their hearing aids or their amplification so to have to start your journey.

17:11:16 During that time of adolescence when you've gone through so many changes and you want to fit in and there's something going on, just adds another perspective to the campUS experience.

17:11:26 So, Andrey you want to talk a little bit about your hearing journey. Of course, so I was born with normal hearing we think about each three, I got to hearing aids.

17:11:40 I was diagnosed with a bilateral sensorineural moderate hearing loss mild to moderate, and then over the years I progressively lost it on. And eventually, I became profoundly deaf in both ears.

17:11:55 and then when I was 10 almost 11, I received a cochlear implant on my right side.

17:12:00 And that's currently what I'm wearing right now and then in my left ear I still have a little bit of hearing left but I don't wear any assistive technology with that.

17:12:08 And I'm doing really well. I love my cochlear implant. You are an inspiration for me when I went through my whole cochlear implant process last year. And I know I met with you and your mom and you still remember them because you were a little bit older when you

17:12:26 went through that process so you were able to kind of share with me your journey through that which is really important, which kind of gets me to my next question is, I know Katie, you have a sister and you have grandparents who have hearing loss but

17:12:42 did you ever know anyone else outside of your family that had hearing challenges. I did not not until actually I went to campUS, and started to me so and the other counselors that were in the AuD programs with me.

17:12:58 And it kind of made me realize and kind of helped me understand the importance of not only wearing my devices but knowing interacting with those around me that I've learned during last.

17:13:10 Yeah, and to think about, I guess, you know your choice of going into audiology is, I'm just gonna kind of go off a side question there being reluctant to where you're hearing a high school.

17:13:25 When you diagnosed and then, not knowing anybody outside of your family. How did it kind of steer you into audiology and I think you're such a strong advocate now for kids and to you.

17:13:40 But if you look at your history you by will think that. Yeah, yeah. So I actually first started to think about audiology because like watching my sister, my sister was diagnosed late later than usual.

17:13:55 And just like seeing how hard it was for her to catch up to her typically developing peers are typically hearing peers, really made me realize how much advocating and educated, we need to do as audiologist for parents for other professionals you know anybody

17:14:11 really that interacts with kiddos on a daily basis. And then after you know kind of watching my journey through it, it made me understand how important it is to really connect with those around you who have other, like other hearing disorders, because

17:14:26 I think had I had that I wouldn't have been so reluctant and so shy to hide my devices.

17:14:35 Yeah, and I hear that a lot from from teenagers to they meet someone else and they're like, Oh, I'm not the only one, right, it's not just my grandparents that have this going on because that's a lot of times just in the normal public or, you know, the

17:14:51 mainstream world really associate hearing loss with getting old. And so a lot of times we don't really associate hearing loss with the younger population, and it does impact the younger population.

17:15:07 So, Audrey Did you know anyone outside of yourself and When was the first time you met someone else with hearing loss.

17:15:25 Yeah, so I actually was really on when I first met somebody that had a hearing loss. I mentioned before my intervention specialist Mrs Proccacio. She works for everybody in my school district that has a hearing loss so naturally whenever she had a new

17:15:33 person with a hearing loss, I met them as well.

17:15:36 There was a guy at my first grade class that had a hearing loss.

17:15:41 He eventually moved out. But then, one of my best friends. Her name is Leah Messmer.

17:15:47 I met her when I was in sixth grade and we have been best friends ever since I still keep in touch with her a lot. And then I believe she works with like 15 other students I also have a hearing loss.

17:16:01 And if we're in the same school we try to have a similar  time period where we can sit down, we can learn about advocacy skills we can learn about hearing loss in history we can learn about different strategies that we can promote in our school problems

17:16:18 arise and it was a really, really enriching experience and I'm also very lucky to have other like you know Hit It and campUS, so kind of expand my community as well.

17:16:30 Yes, and I wish every school I had a Mrs. P, because she is amazing, and the sense that we know how important advocacy is and we're not going to know those skills, as someone or an individual with you.

17:16:48 Unless Unless somebody teaches us, because we don't know what to ask for we don't know what to ask for it. And so that those are really important concepts which kind of brings me to the campUS experience and why I had said in the first episode with Dr.

17:17:06 Whitelaw really what campus was about and similar to both of you I went through mainstream type school and didn't really know that many people with hearing loss and didn't have the opportunity to learn about advocacy in my high school, and honestly

17:17:27 through college, either. And I was missing that so much with really personally gave me the idea of the campUS experience and that's when I said Dr. Whitelaw you need to come and help me with this would be a great team and that's kind of how we got started

17:17:45 with, with the campUS experience but we wanted an opportunity for teens throughout Ohio and beyond to be able to network and have a positive transition experience.

17:17:57 So I thought, you know, we would talk a little bit about the role of the different people involved and Katie you were at counselor for a couple of years, and so can you just talk about how you got involved with campUS and what your role was and how you

17:18:18 felt like you were all really helped with the campUS experience.

17:18:22 Yeah, so, um, I kind of got involved, like you said earlier, just by you know you bringing up the idea of campUS and kind of explaining it to me. And it just kind of started to spark, all of these different you know ideas in my head about why I need to

17:18:38 be doing this or you know how much I wish I had that as a teen and so I wanted to help somebody else have that experience about feel the way that I did growing up.

17:18:49 So, you know, as a counselor, you're just kind of there to not only educate and advocate for the students but to show them what they can do, not what they're limited by.

17:19:00 And then, you know, just being a voice or, you know, a set of ears for them to just really come to and talk to because it's a hard thing to go through, and it's even harder when you don't have other people around you that understand what you're going

17:19:16 through. So you know, like my favorite part was just when we all got together in small groups, and some of the campers who started kind of explaining what they've been going through and all the emotions, they had built up and bottled up inside, and they

17:19:29 didn't. They didn't have anybody older to really talk to about it so just being able to be there and to listen to them it's all they needed. So just a follow up question Katie is you had said that you had not really met anyone outside of the family

17:19:46 until the campUS experience and you met some counselors and some of them happened to the other AuD students, who also had hearing loss so from that perspective as having those mentors of other counselors, how did you feel about that and when did that

17:20:04 bring to you overall.   yeah so I just, it's such a small community to have other you know audiologist in general who have a hearing loss that we kind of, we have to stick together and we have to help each other through it so you know just having those

17:20:20 other connections, right off the bat where you know I'm struggling in a class I can reach out to Peyton or you know John and just ask them like hey, how did you get through this class what devices, did you use what did you do differently, what am I missing,

17:20:34 what kind of resources do you have available at your school that I could look into getting for myself, so.

17:20:41 Yeah, and I think that was one of the gifts for me and then in charge of this student or the teen track and the counselors was and it was almost a byproduct of campUS like I didn't realize that, you know, we wanted to get all these teens together,

17:20:58 who had not met anyone. But then, all of you as counselors and younger adults, 20 something, you know, who hadn't met anybody either and kind of almost like this trickle down effect that really was amazing.

17:21:14 Another component of campUS that just, you know, was fulfilling but me and one of the co-coordinators too.

17:21:23 So, Andrey as a camper. And what what do you feel like was positive for you and what did you feel like really.

17:21:33 You left campUS at, you know, knowing or learning or connecting with.

17:21:40 So, I was a camper for two years. I wish I could have gone before because I knew it existed longer but I couldn't do the other commitments but I'm just going to campus in the two years I have learned and met so many positive people, and it's really cool because

17:21:58 you look at it as you know the counselors are helping the campers there's also like the campers often the counselor that Katie said, I'm just talking about experiences and opening up to other people.

17:22:08 It's very rare for me to do that because I feel like Not a lot of people understand, you know what other people are going through unless you're going through it too.

17:22:16 So it was really cool to see how other people are also going through similar struggles, and you're not alone in the process even though every person hearing loss journey is different.

17:22:25 We all those things in those same core experiences that it was really cool to kind of break down and talk about, and we always have like a guest speaker that comes, that's like somebody that is just a really positive influencer I made like

17:22:41 such a big impact in the hearing loss community, and I always enjoyed listening to like the different speakers every year. And it's always cool to see like the growth because usually it's like with the people returning back every year so it's really cool

17:22:54 to see like the growth that every person has exhibited at like the past couple of years. And like their careers and education.

17:23:03 Yeah, I always like the keynotes too we, and that I explained it and I said that we try to get celebrities in the hearing loss world to Come talk about their journey and we've had the community and then they, you know, Miss San Antonio and Miss Pennsylvania,

17:23:21 and just different people who had done different things and been successful, and they had not let hearing loss, really define who they are just kind of expand who they are.

17:23:33 But I, I guess I want to go back to a question for you.

17:23:38 I always get from either. Sometimes parents, and sometimes teams like, I don't need to come to something like this like I feel like I'm fine like I, you know, and I think about you, like you were a cheerleader at Hudson you were involved in lots of different

17:23:55 clubs and people might look at you and be like, you know, you're fine like why do you need something like this. So, what can we share with others, whether it's parents or teens about campUS and, and why they might want to give up, 24, to 36, hours of

17:24:13 their life to have this experience from the outside and it looks like Sometimes a person is doing amazing, and well I don't let me hearing loss to find me there are you know bad days that I have really struggling there are great day for I'm driving and,

17:24:22 you know, I'm the kind of person that doesn't really let that be known to other people. So I feel like, you know, your own judge of character your own judge, hey maybe like this can completely do that this can be something that can really help me.

17:24:45 And it's, it's never a bad thing to go to campUS. I mean, I always learned something new, you may think that oh you know I did this last year or I'm fine, but there's always something that will surprise me there's always new people that you're going to

17:24:56 meet and in the future, especially if they're going to college or they're going into like a career. It's good to have connections to people that have experienced it before you and while you may not think that they're going to have problems in the future

17:25:11 you might and you may want to connect with those people that have similar experiences on you.  Katie do you want to add anything to that?

17:25:34 Yeah, so with Mackenzie, I mean Mackenzie is like you said in a mainstream classroom I mean she knows other other students with hearing loss she interacts with them on a day to day basis, but I think you know her just being there she's a very shy person,

17:25:50 but her I think coming with me and just being able to interact with other people, it's a safe space so she doesn't have to feel like she's pressured to do anything.

17:26:00 It's a time for her to be able to open up on her own and to talk, but also to learn about a lot of the advocacy things that are missing in you know mainstream schools where they don't have somebody dedicated to teach them that I think it's very important

17:26:14 along with parents, because even though my mom had two with hearing loss over at completely different ages. She really learned a lot about how to advocate for your student but how to let them advocate for themselves and what kind of, you know, resources

17:26:27 are available because when I went to college I mean there was nobody to tell me like, Oh, you can get close caption and you can have a note taker you can, you know, have priority seating all those kinds of things and FM system, you know, for your hearing

17:26:40 aid. There was nobody really to teach her what to have mean even asked for so i think you know just for being there and meeting other parents, and it kind of also let my mom, create a support group for herself because you know it's not just about us

17:26:56 it's about the family as a whole, which is really why pediatric audiology spoke to me is because I can create this family centered approach.

17:27:06 And you know allow the parents to feel supported and not feel like it was their fault or they did something wrong or they're completely lost and they don't know what to do for their kid.

17:27:16 I think it just kind of brings the family together and allows the parents to feel more supported and more confident which then allows the students to feel more more supported and empowered.

17:27:26 So, yeah, and that is just another I think integral part of the campUS experience is where we do have a parent professional track that aligns, you know parallel with the teen track and having the parents come and being able to network with other parents

17:27:43 I feel. We have a lot of support for itty bitty for toddlers and infants at for support groups, and then all of a sudden, as a parent, you like we have to like go, and we don't know how to support our transitioning teenager to the real world and what should

17:28:03 I be thinking about and just different things like safety and communication and living on your own and all of the things that the parents really learned a lot about I think in that process.

17:28:17 So, one thing, Audrey I wanted to go back to you and ask you, you mentioned a while ago. Let me step back and Katie something. at you kind of mentioned that you didn't know about asking for captioning and asking for some of these services from when to go to college.

17:28:36 Andrey Do you feel like by attending campus. You felt more prepared for your freshman and sophomore year at The Ohio State University, and, and why.

17:28:48 Yes, definitely. Um, I did learn through my intervention specialist like growing up middle school, high school that those services were offered to various colleges, but because I always wanted to go to the Ohio State University.

17:29:01 It was really cool to go to campUS and see like people like you and people that would translate that were already up in a graduate program that had been through undergrad, it was too and they.

17:29:13 I actually personally asked them as well as you covered it in the program but I really got to ask specifically like what they did and what services helped them and maybe what they went through that, that they would have changed and for me to avoid so

17:29:27 I definitely felt a lot more prepared and my experience here with accommodations it's been amazing.

17:29:37 I guess, um, do you guys have any highlights of campUS that you want to just share with everyone who's listening today that may enlighten them or might even encourage them as if they're a professional to start their own type of a program.

17:30:02 

17:30:07 So it being just highlights is the core of why you created campUS and why you're not you're a lot of continue to do is just the support the resources available are like none other.

17:30:19 So, you know, as a professional now actually practicing audiology that's something that I always want to offer my families, you know, like you said, there's a lot for the younger kiddos.

17:30:30 but when you get to those teen years It's hard enough, let alone having a hearing loss on top of it.

17:30:36 So just, you know, being able to offer that kid, these resources and so you don't have to be afraid of your devices you don't have to hide your devices.

17:30:44 You know, these devices are here to help you and, and not to limit to you but to push you even further to connect with people that you never would have connected with before.

17:30:53 So, you know, I think professionals really need to look at it as a whole and even attend because there's so many things that they could learn. You know, there's not only audiologists there to ask questions to but there's parents to get their perspective

17:31:07 there's teens that just speak up.

17:31:09 We have the, the counselor panel where they can ask, you know, any number of questions so along with the keynote, I think that it's really important for professionals to understand the audiology side of it and not to just treat the kid in a classroom

17:31:25 not worried about what goes on at home or social life or sports or anything like that. So, yeah, you do get such a different perspective and I, I'm always amazed that it's a 24 to 30 hour period of time, and the connection that is so strong that are made

17:31:45 by just bringing people together, and I feel like the lifelong connection for a lot of these teens and and counselors to that they kept in contact with as well.

17:31:59 So, Andrey Do you have a highlight.

17:32:01 Yeah, so I remember we always had like one staple activity that we did I think the last campUS that I attend doing me like these bracelets, where we had like one word on them, and I actually still have my bracelet and are you wearing it so funny I'm not

17:32:17 wearing mine right now but I wore like, every week, and whenever I'm like doing homework I always look at it because it's on my right hand and I look at it and mind says the word believe on it because it's a reminder for me to like believe in myself.

17:32:32 And just to go back to the person that I am I know that like my disability doesn't define me doesn't limit need to believe in myself and I can do it. And I'm not feeling confident or, I'm having a bad day.

17:32:44 So it's like those little moments that campUS brings and means it has given me, you know, that way so I've given me like positive memories, and it still reminded me a positive memory, like to later and I definitely think like Katie said like it's a holistic

17:33:02 thing.

17:33:05 Not many people have a team behind them like I did like educational audioloigst and intervention specialist I had like a whole hearing loss community I was so grateful to have that you have to think of the people that most likely don't have that in your career bringing

17:33:18 this program to those people that don't have it you could be changing their life in the future for like that.

17:33:33 program to those people that don't have it you could be changing their life in their future for like the better.

17:33

17:33:48 So anyways, thank you for both sharing those highlights of of your own campUS experiences too because I think that's important for other people to hear and knowing hey I want to start a program or I want to offer this to someone would be, and I think

17:34:08 motivation by hearing both of your stories from the counselor perspective and having everybody who is in the shoes to the teen perspective, being able to go through a lot of these activities and to be socially connected is important as well.

So, again as we wrap up, I want to say thank you to both of you for being on this podcast today and be able to share you story and journey and I appreicate it so much.  So thank you both for being on today.  Thanks for having us. Thanks again and have a great day. 

This has been a production of the 3C digital media network.  

Episode 8: EmpowEAR Audiology - Carrie’s Cochlear Implant Birthday

Welcome to the empowEAR audiology podcast.  My name is Dr. Carrie Spangler and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world.  I wanted to have an empowering podcast for ALL of my listeners.  Many of us learn and grow by being in communication and connecting with others.  It is my hope that all of my listeners will learn something new and be empowered after each episode.    Whether you are a professional parent, individual with hearing loss OR just want to be inspired, I am glad that you are here with us today.  

I would be grateful if you take a moment to subscribe and give a positive rating for this podcast.  Also, like the facebook page, EmpowEAR Audiology and engage in a conversation about each episode.  A transcript of each episode is also available on the 3C Digital Media Network webpage in the section of podcasts.  

Happy CI Birthday to me!!  I cannot believe that it has been a year since my surgery and activation day.  Birthdays are always a reason to celebrate, so why not celebrate the birthday of my CI.  

This journey really has really forced me to be vulnerable and step outside of my comfort zone.  I have always been willing to share my hearing challenges with those I work with and families, but the start of the cochlear implant journey was a way to be vulnerable in who I was.  Brene Brown talks a lot about being vulnerable in her book Dare to Lead.  I am empowEARed by the amazing quotes that she has.  “Vulnerability is not winning or losing; it’s having the courage to show up and be seen when we have no control over the outcome.  Vulnerability is not weakness; its our greatest measure of courage.  

This podcast episode is again being vulnerable and sharing with all of you MY own cochlear implant journey.  Come join me as I take you on this rollercoaster adventure.

Before I get deep into the CI journey, if any listeners would like the backstory of my hearing loss, I encourage you to listen to the first empowEAR episode “What is Your Purpose”,  I took a deep dive into growing up with hearing loss and the life tests that developed as a result of growing up with hearing challenges in this vibrant hearing world.  

How did the CI journey get started?  All of you listeners know that I am a passionate audiologist with hearing loss.  I work in the public schools as an educational audiologist.  I work with a multitude of students with CI’s, their families, and educational teams.  I have at times suggested to families; have you considered talking to your clinical audiologist and ENT about the possibility of CI?  Your child is working really hard to listen and understand with hearing aids.  

Flip the table.  Now it is me personally who is working really hard to hear and understand what people are saying.  BUT, in the beginning, I did not want to believe that this was happening to me.  I was in complete denial.  I started making up excuses in my head for what I will now call “unfocused hearing”.  I would blame not hearing well on my attention to something else.  I would blame unfocused hearing on someone mumbling.  I would blame unfocused hearing on hanging out in the local coffee house with poor acoustics. I would blame unfocused hearing on not getting enough sleep the night before.  I had an excuse for unfocused hearing when I knew deep down it was more than unfocused hearing.  

If I had to be honest with myself, how long did I put the blame on unfocused hearing??  I  admit it took me about 2 years to come out of “denial”  that my ability to discriminate speech was not external, it was internal.  AND I am an audiologist.  But I am also a human being with feelings about loss.  Losing more hearing is a loss, even if it is gradual.  I was going through this denial, anger, and detachment with my unfocused hearing because quite frankly, it was getting more and more difficult to understand what people were saying.  

What changed?  Do any of you have a little voice in your head?  The little voice, birdie, in my own faith...God, kept telling me….Carrie, you need to build up the courage to make the phone call.  The phone call to set up an appointment for a CI consult.  

While the little voice was getting louder in my head  to make the call I was also trying to ignore this voice.  On the other hand  I was dialoguing with MANY resourceful colleagues and friends.  I feel like different people were strategically placed in my life so that I could have another seed of courage planted to make that call.  I talked with CI audiologists, CI surgeons, CI manufacturers, and most importantly...my audiology peeps who also have HL and have CIs.  All of these people along the way have given me their personal cell phone numbers and said to call at any time.  

The little voice, I kept arguing with….and my biggest argument was “what if??”  What if this is not the right decision?  What if this doesn’t work?  What if I hate it and never get used to it?  Sometimes it is a sign from above that gives you the courage to move forward.  I have to share this little story.  I was getting ready to go to an audiology conference and looking for a book to read on the plane at the airport.  The best seller, Girl Stop Apologizing” by Rachel Hollis caught my eye and I decided to buy it.  The introductory chapter of this book was titled “What IF”....and Rachel Hollis asked “What if God put this on my heart for a reason”.  I was immediately taken to my own “what if” question and knew this struck me so profoundly that I needed to make the “what if” call for a CI consultation.  What if this call and outcome changes my unfocused life for the better?

After returning from this conference, I picked up the phone and called the Ohio State University Medical Center for a CI evaluation.  Date set for July 29, 2019.  

Leading up to this appointment, I would be remiss if I did not mention the importance of #sameselfpeers.  As an audiologist, I understand the CI process on a more advanced level than the average patient.  I thought I would be OK with this because this is part of my job.  But it is not that way.  When the seat at the table is turned and you are on the other side; you gain a really new and different perspective.  I felt so blessed to have a network of AuD friends with CI’s that were my lifeline.  I could ask any question and they shared their own experience.  I just want to have a huge shout out to Stacey Lim, Karen McGiver-Lux, Tina Childress, Samantha Kesteloot, and Sam Atcherson for being my #sameselfpeer lifeline.

July 29th was finally here and Troy (my husband) and I were starting our 2 hour trip to Columbus with a quick run through Starbucks.  Troy has never been to an audiology appointment with me, so this was all new to him.  We arrived and got checked in.  I remember having second thoughts and thinking...I am not sure why I am here...I don’t think that i will be a candidate but I need to rule it out.  

My name was finally called and we went back to the booth.  I was on Dr. Debby LaPrete’s audiology schedule that day.  Troy stayed in the booth with me as she went through the multitude of unaided and aided testing.  At times, Troy had to busy himself with his phone because the sounds were escaping the headphones and I was not hearing.  I knew without seeing the results that it was not good.  Seeing the results on paper; brought my unfocused hearing into reality. My hearing  had shifted and my speech discrimination was not good.  Both of ears looked the same audiometrically (for those audiologists out there, I have essentially normal/mild loss in the loss frequencies and steeping slope to a severe to profound in the mid and high frequencies.  However, my speech discrimation for the left ear was much worse than my speech discimiation in the right ear.     Dr. LaPrete confirmed my reality...audiologically my scores were in the CI candidacy range.

My next appointment that day was with Dr. Oliver Adunka, who is the director at OSU Dept of Otoloyngology, Head and Neck Surgery with a speciality in CI surgeries.  My path had intersected with Dr. Adunka because of a professional collaboration for the state of Ohio.  After waiting for a while, my name was called.  Dr. Adunka and an entourage of medical students with him that day as well.  After looking at all of Dr. LaPrete’s audiological testing, taking a case history...he confirmed that yes I would be a candidate for a CI and also explained that with my configuration of hearing loss, I would also be a candidate for hearing preservation CI surgery, which means that preserving my residual low frequency hearing could be a strong possibility.  

After answering many questions, my final question to Dr. Adunka shocked me the most.  What are the next steps for moving forward??  I actually left my July 29 appointment with a surgery date of Nov 15, 2019.  What a huge step forward and all in one day!

August 29, 2019 I had another appointment with my CI audiologist, Dr. Debby LaPrete to select which CI would be the best fit for me.  Based on my results and consultation with my CI team, the left ear was the worse ear and would be the CI implant ear.  I was also able to talk extensively with Dr. Adunka about the 3 different choices and received valuable insight about the internal device (part that will be implanted) as it compared to my personal hearing loss and results of the CT scan.  My audiologist (Dr. LaPrete) shared with me a device comparison sheet and manufacturer information and I was able to go home and look at this. For all of you listening who may be thinking about a CI, I encourage you to do your own research, talk with the CI team, talk with CI recipients, and go with what feels right for you.  Putting on my “audiology hat”, I have had the opportunity to work with children who have CI’s and it is not the device that determines the success.  It is the expert placement of the internal device by the surgeon, the CI mapping audiologist and patient relationship to establish baseline and continued mapping/programming, the  hard work that goes into learning how to listen with the CI (yes, I am signed up for specialized listening therapy), and of course the village of support that is needed from family and friends.  There are always going to be individual variables that will impede the success of progress that may or may not be accounted for and everyone is individual.  Cochlear implants are a modern marvel and I am thankful for the engineers and scientists at each manufacturer who study this and continue to improve the internal and external devices so that individuals like me can benefit.   After doing much research on my own and comparing the different devices as well as external options, I decided that the Advanced Bionics (AB) cochlear implant is the right choice for ME.  On August 29, I was able to select my color and accessories!  Another step closer on this incredible, decibel experience!!! 

I didn’t have any other appointments until my actual surgery date of Nov 15.  Thankfully I did not have much time to really think about the surgery as the beginning of the school year had begun and I was fully immersed in my educational audiology responsibilities.

Then all of the sudden it was November!!  My surgery date was in 2 weeks and the countdown was real.  The roller coaster ride of emotions came flying back. On the professional side, I knew that this was the right decision.  On the personal side, I felt anxious, nervous, excited, and scared.  I am a person who LOVES order and structure in my life.  This is going to be a test of trusting the unknown and having faith through this process.  I also know that this process is going to be a test of my patience, perseverance, and positivity.

November 14….Troy and I headed to Columbus for an overnight stay before the big surgery day on the 15th.  I have to say that the roller coaster of emotions and anxiety had actually subsided and I felt a peace about the whole process.  Troy and I had a wonderful dinner with some wine (before the 11 pm pre surgery instructions) and had a good night sleep.  

I woke up extra early on the day of surgery and actually experienced a little sadness when I realized that my left hearing aid which has been a part of me for over 40 years was no longer going to be part of me.  At 6:45 AM we arrived at the Ohio State Brain and Spine Hospital to get checked in.  Got all prepped for surgery with IV’s, heart monitor, and other prep.  Met with the anesthesiologist to go over health history.  Also met with Dr. Adunka prior to surgery and he was ready to roll.  By 9:15, I was being wheeled back into surgery and next thing I know it  was 11:45 am, I was being “woke up”.  The anesthesiologist asked if I knew where I was and I was able to tell her the hospital.  They asked me a few other questions and wheeled me back to recovery. 

I found out in recovery that Dr. Adunka had called Troy.  The initial report was all positive!  No complications during the surgery and he felt confident that the internal device was inserted without complications and he felt that he was able to save some of my residual hearing!  It will be hard to tell exactly with all of the fluid and packing, but I am hopeful for this!  I have now been initiated into the BIONIC ear world!

In recovery, I was in localized pain (obviously) on my left side.  I did end up taking a high level pain pill to help with the initial shock to this side.  The nurse also wanted to be sure that I was able to walk.  The moment of truth to see if my one fear of dizziness after surgery was going to be there.  I was able to get up with a little unsteadiness, but overall, I felt pretty good!  I got to see what I looked like too.  A big white softball sticking out the side of my head and some really crooked glasses

By 1:45 we were on the road back home to recover.  By this time, my appetite had returned some, but my jaw and throat were hurting.  The only thing that sounded good was a Wendy’s frosty and some French fries!  Something soft and something cool!  By 4:00 I was on the couch with my wedge pillow, lots of meals from my mom and friends, flowers and cards of inspiration, and ready to take a nap.  Kept up on Tylenol every 4-6 hours and drank lots of water and hot tea.  The first week I experienced some good and not so good recovery days; each day I felt physically stronger and more energy.  I continue to have the feeling of pressure/fluid in my left ear.  I also experienced some blurry vision (when reading), which also can be a side effect of the surgery and vestibular disturbance.  The vision cleared up about 5 days after surgery. 

One thing that I knew as an audiologist and as a patient, was that I am going to be without hearing (or very little!) post CI surgery.  However, nothing quite prepares you to have a sudden unilateral hearing loss.  All of my life I have experienced the same degree of symmetrical hearing loss in both ears (audiogram).  These past 10 days have created a “profound unilateral” challenge by taking away all of the hearing in my left ear.  At first, I did not notice it too much because the physical pain of post surgery was on my mind.  After 5 days of being in the house and getting stir crazy, I felt well enough to venture out.  Getting out of the house immediately challenged my “profound unilateral” loss and what a challenge it was!  I quickly become hyper aware and alert of my surroundings. I could not localize where sounds were coming from and kept scanning my surroundings to be sure no one was actually trying to say something to me. Listening fatigue is REAL and emotionally and physically drains.  Each small venture out resulted in a nap!  Maybe this is God’s way of preparing me to embrace the little wonders of sound when I am activated with the CI.

Remember listeners, at this time in the journey, I have not been activated.  I remember the feeling of discouragement creeping back in my mind with those initial questions...Was this the right decision?  Is this going to work?  Except now, there is no turning back.  Timing is everything.  I was watching Netflix and the episode “The Call to Courage” by Brene’ Brown popped up on shows to watch.  In this episode, Brown talks about vulnerability.  She describes vulnerability in this way; it is not about winning or losing, but it is about showing up when you don’t know the outcome.  She also talked about choosing courage over comfort and the need to be brave in our own arena.  If we deny our story, the story defines us.  If we own our story, we write a brave new ending!  

December 4,2019 finally arrived.  Troy, Hannah (my daughter) and I arrived at OSU for the long awaited day.  My audiologist, Dr. Debby LaPrete and AB Clinical specialist Dr. Johnny Sabol were all on board.    The appointment started with measuring residual hearing in the left ear and I am still astonished that Dr. Adunka through surgery was able to preserve so much of my low frequency hearing.  After all of the preliminary testing and acoustic verification, THE moment of anticipation was finally here.  Once the impedances/electrodes were checked, it was time to start the mapping (or programming) process.  Dr. LaPrete hooked me up.  This was the first time I got to experience what the magnet and cochlear implant processor would feel like on my head.  I was surprised that the headpiece/magnet really was not tactilely noticeable once it was in place.  I imagined some sort of magnetic strength that would feel uncomfortable on my head.   Next each of the electrodes was tested individually through the programming software.  I had to subjectively judge the perceived loudness of each of the 16 electrodes ranging from low to high frequencies using a loudness growth chart (ranging from no sound extending through too loud).  Once I reached a subjective comfort level, I felt like I was at the eye doctor trying to figure out if “1 or 2” was clearer. Once all of the soft and comfort levels were subjectively determined, it was time to experience listening to ALL of the electrodes together…the real CI activation experience.  It is REALLY hard to describe what you have never heard, EVER.  At first I didn’t think that I was actually hearing anything at all.  I kept thinking that I was hearing some sort of hearing aid feedback. This was the aha moment that I realized I was actually hearing sound from the activated CI.  The best way for me to explain what I initially heard is feedback, bells, chirps, and whistles. 

The activation continued with quite a few listening situations in which I would listen through the CI only (take out my hearing aid and plug up my ear), as well as listen with both the CI and hearing aid (bimodal) to make sure that I could tolerate both at the same time.  At one point later in the mapping session, Dr, LaPrete  turned off the CI for and I just had my hearing aid in.  I know I was exhausted from trying to make sense of all of this sound and I made the spontaneous and fatigued comment, “oh, back to normal”.  Debby and Johnny immediately asked if I could expand on my “back to normal” (hearing aid) and the CI.  The analogy that came into my mind was that the CI would be like going to New York City for the first time.  It is busy, noisy, full of activity, exciting, and overwhelming.   The hearing aid would be like going out for a weekend drive in the country.   It is a calm, quiet,  leisurely, tranquil drive through back country roads. 

One-week post activation and what a world of jingle bells and many more sounds abound! I am fascinated that with just one week of intentional, dedicated, full time use of the cochlear implant as well as auditory training my brain is creating a whole new network to make sense of the multitude of sounds and speech that I have never heard before.  I can personally attest that I will need a lot of listening training to make sense of this whole new world.  I am thankful for my Auditory verbal therapist Dr. Denise Wray who pushed me to make sense of sound and  benchmarks  listening skills to challenge me to train my CI and listening brain. Each day the CI sounds gets a little more focused and clearer, but the key is to have the mindset of intentional, dedicated, full time use of the CI so that it becomes more natural and part of who you are!  I am sure that I am going to be learning more and more about the refining process, but one of my initial goals was to dedicate myself to full time use of wearing the CI during my waking hours.  

With that being said, I had many initial hearing  discoveries.  Here are a few of the highlights!!

  • I had to take the dog collar off Josie when we went for a walk because the metal dog tags were annoying me, hence I have never heard dog tags clanged together
  • The turn signal in the van is audible!  I could always see the light flashing knowing it was on, but it is audible too!
  • I heard the sound of freezing rain hitting my windshield as I was driving! (Ohio winter is on its way!)
  • My feet making a crunching sound when walking on salt that has been freshly strewn on the icy road
  • The carts at the grocery store are loud and squeaky (and quite annoying!).  Does anyone spray these things with WD-40? 
  • Christmas and Holiday MUSIC!

LIsteners, I could continue to share many more CI hearing celebrations with all of you.  I encourage you to go to my blog, hearingspanglish.blog to read more about this journey over the past year.  With all of the craziness in the world, I want to thank all of my listeners for celebrating my 1 year CI birthday with me.  

Thanks for listening to the empowEAR audiology podcast.  Make sure to visit the website at 3cdigitalmedianetwork.com and click on the empowEAR podcast where you can subscribe to the show in iTunes, Spotify, and Google.  Also engage with me on my FB page at empowEAR audiology.  While you are at it, if you found this show to be valuable, consider giving me a 5 star rating or simply tell a friend or colleague about the show.  As always, thanks for listening and being empowEARed.  

 

Episode 9: EmpowEAR Audiology - Dr. Oliver Adunka

[00:00:00] Welcome to episode nine of EmpowEAR Audiology with Dr. Carrie Spangler.

[00:00:16] Welcome to the EmpowEAR Audiology podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey living with hearing challenges and this vibrant hearing world. Many of us learn and grow by being in communication and connecting with others. It is my hope that all of you as listeners will learn something new and be empowered after each episode.

[00:00:40] Whether you're a professional, a parent, an individual with hearing loss, or just want to be inspired. I am glad that you are with us today. I would also be grateful if you take a moment to subscribe and give a positive rating for this podcast. Also like us on our  EmpowEAR Audiology and engage in the conversation.

[00:01:01] After each episode, a transcript of each episode is also available on the 3C Digital Media Network website in the podcast section. So let's get started today with today's EmpowEAR Audiology podcast. This episode is really special for me for a couple of different reasons. First and foremost, I have the incredible honor to interview my own cochlear implant surgeon, Dr. Oliver Adunka.

[00:01:28] And second, the reason that's really special today is that my one-year cochlear implant birthday is in the month of November. So, let me tell you a little bit about Dr. Adunka. Dr. Adunka is the director of otology neurotology and cranial based surgery at the department of otolaryngology head and neck surgery at the Ohio state university.

[00:01:55] He's also part of the department of pediatric otolaryngology at [00:02:00] nationwide children's hospital in Columbus. Dr. Adunka specializes in otology neurotology and lateral skull-based surgery and shares his time between the department of otolaryngology at the Ohio State University and nationwide children's hospital.

[00:02:17] He is also a full professor. Dr. Adunka attended the university of Vienna medical school. He completed his otolaryngology residency in Frankfurt, Germany, and he also completed a fellowship at the University of North Carolina. Dr. Adunka conducted research that established temporal bone histology data that served as the basis of cochlear implant electrode insertion trauma hoping to reeducate cochlear implant surgery surgeons about insertion techniques to reduce damage within the inner ear and facilitate hearing conservation.

[00:02:57] So today I am really excited to have Dr. Adunka. Thank you for joining me. Oh, my pleasure. So I always like to start off my interviews. I've um, how we know each other. So do you remember when we first met, um, good questions? Uh, I. I mean again as a patient, but we may have had some interactions prior. So I don't know.

[00:03:22] You probably remember as well. I don't know. No, I do. I, I, you probably didn't know. I knew you better than you knew me. And then you did. Um, because I had in the back of my head that, you know, possibly at some point in time, I might get a cochlear implant. Um, so I, I knew who you were before you knew who I was, but that I, I think we actually first met maybe professionally through Children of Ohio, which was the children's hearing and language development resource network that, um, I think, uh, Dr.Derek Houston, might've introduced us. 

Yeah, obviously very great organization. So yeah, that's a great one. Yeah. But in your mind that you may, you may seek out guy about a cochlear implant. What was that again? You may, you may seek out the surgeon about a cochlear implant plan. That's right. Um, but, um, yeah, and then I think we, um, you really remembered me probably last July then when I decided after much hesitation, to begin my own personal journey and schedule an appointment.

[00:04:42] Right. Yeah. Yeah. That's how we met kind of in a different way, but sure. Um, but that kind of leads me to why I'm really kind of excited about this podcast because I think, um, like me, um, there's an, I'm an audiologist that knows a lot about cochlear implants, but I think there's a lot of adults out there who may benefit from a cochlear implant, but have not thought about it.

[00:05:10] And, um, I'm sure there are clinical audiologists that might be listening to this, um, who are patients and their caseload, um, who could be possible cochlear implant candidates, but they haven't made an, a referral. Um, and they haven't had that conversation. So, um, this really, I think hits home to me, um, because I'm hoping that this might.

[00:05:35] Spur others to have a conversation with their patients, or if they happen to have a hearing loss and listening to this podcast that this conversation that we have together, um, well open up their, you know, journey as well. Um, but before we get too deep into that, I was just kind of curious, um, how did you find your way into the specialty [00:06:00] area of cochlear implants?

[00:06:03] Yeah, it was a interesting, uh, kind of journey and it, it all happens, um, by accident, really. Um, I was in medical school and, in, Vienna, Austria, which is where I grew up. And, um, I wanted to become a neurosurgeon. Uh, really, that was really what my, what I set out to do in medical school. And as I became more and more familiar with the work of neurosurgery and, you know, the somewhat challenging outcomes and, um, uh, you know, just the work itself, I.

[00:06:39] Uh, I, I developed doubts and, uh, I really wasn't sure anymore. And they're looked at other fields. I knew I wanted to do something surgical and I remembered that, uh, my, uh, what turned out to be my mentor. At some point, I met him in the neurosurgery operating room cause he, [00:07:00] uh, collaborated with, uh, the local neurosurgeons on certain cases.

[00:07:04] And um, I thought, well, ENT is kind of cool. So I, um, look more into it and, um, ultimately. You know, we had to write a dissertation too, in order to graduate with a doctorate degree. So I, I talked to this person and we sort of hit it off. And ultimately, uh, he offered me to write my dissertation with him. And, uh, it turned out that, you know, the topic he said, he said, was to write up our clinical results for cochlear implants.

[00:07:38] And again, that was in the 1990s. So there weren't that many, uh, there wasn't a lot of data out on cochlear implants, so, and, um, one of the manufacturer MedEL is from Austria. So that's, um, that turned out to be, um, an important pathway. For me. And, uh, ultimately, you know, after graduating medical [00:08:00] school in Austria, we had to, we have to spend some time in the military.

[00:08:04] So I did that and I had some time in the late afternoons to go over to the general hospital and do some cochlear implant research. So, uh, that's sort of how this. Snowballed into something. I always had a passion for engineering. And, uh, so I certainly liked the fact that this is a device. This is an implant.

[00:08:23] This is. Electrical engineering, which I like even more than just engineering, I would say. And, uh, I like electorsurgical science. So really that was sort of one of the things I was able to combine and, uh, back then, and, uh, this person, uh, Dr. , he's now back in Vienna, but at the time, you know, after I'm military, Um, he became a chairman in Frankfort Germany, and he said, why don't you come with me?

[00:08:51] So on the, he, he sort of was a, was a big part of why I chose to you know, became involved in cochlear implants, et cetera. Right. [00:09:00] And, um, ultimately after, after that, after my residency, I stayed on and Frankfurt, Germany, and, um, you know, wanted to be a neurotologist that wanted to add the neurosurgical side to my practice.

[00:09:12] And, uh, that wasn't, uh, Did he really in Europe to do that. And ultimately that's why I came to the United States. Uh, certainly had several hurdles on the way in terms of, you know, credentialing and tests and all that kind of stuff. But, um, so that's why I ended up at UNC and, um, Yeah, here I am now at Ohio state.

[00:09:33] So it sounds like you had some great mentors along the way and able to take lots of your interest in the one area and focus on, on cochlear implants and be there really from the beginning of when cochlear implants. Started. Um, but so just so all of our listeners are kind of on the same page. Um, can you give just a quick, like minute overview of what a cochlear implant is [00:10:00] in case some people aren't, aren't sure about it.

[00:10:02] Sure. So a cochlear implant is, uh, he's, uh, is really the only neuroprosthetic that provides, uh, replacement for a sense, right? The sense of hearing and the cochlear implant. Is it really a semi implantable device. So meaning that the only part of it is actual an implant. The other part is worn outside and, um, the implant is inserted into the cochlear, which is the inner ear is shaped like a snail.

[00:10:29] And, um, the cochlea is really special in a way in multiple ways. In one way is that the frequencies are aligned along a certain, um, uh, you know, frequency distribution. So meaning that each pitch in the cochlear has a certain location and with multi-channel and cochlear implants that were FDA approved in 1985.

[00:10:52] And they utilize that principle. To stimulate each pitch at a different location within the inner ear, within the [00:11:00] cochlear and really what they do to bypass inner hair cells, which is which of the rate-limiting step of hearing. And luckily it's the most commonly affected part of the hearing. Right? Usually the nerve is pretty good or, or, or.

[00:11:15] Adequate, at least for hearing with a cochelar implant. And we basically stimulate nerve endings, electrically via a cochlear inpmlant, and the, the actual processing is done on, on the outsides. Um, and that may change over or, you know, down the road with, you know, the future of fully implantable devices, et cetera.

[00:11:34] But, um, ultimately. Two processing of the device, the sound pickup, and then the processing is done on the outside, in, through a coil, through a radio-frequency coil and similar to how you charge your, your cell phones these days. Right? It's all a wireless, uh, it's transmitted through a frequency link to the internal components.

[00:11:54] So that's really how  worked twice, the only working, um, replacement for a [00:12:00] sense. So, um, Yeah, it's pretty amazing technology. I can, I can personally say that by that. Yes. And, and I think it kind of brings me to my next point where, you know, I think a lot of people are still under the assumption that you have to pretty much have no residual hearing in order to, to be a candidate for a cochlear implant, um, and pretty much get no benefit at all from, from hearing aids.

[00:12:32] Um, and I know recently you were involved with a, um, A review publication titled , unilateral, CI’S that severe to profound or moderate sloping to provide profound bilateral hearing loss. And I think one of the main questions was how can we improve awareness about the potential advantages of cochlear implants in adults?

[00:12:57] Um, with, you know, [00:13:00] severe, profound or moderate sloping to profound hearing loss. Um, can you let us know, or our listeners know a little bit more about what that publication revealed? Yeah. So, uh, this particular publication you're talking about is a product of Delphi consensus. Uh, which is basically, um, quite an intricate process and a company from the UK, uh, pretty much led that Cochlear corporation, one of the device manufacturers, uh, sponsored it, but advanced Bionics was involved MedEL was too.

[00:13:31] And, um, what it really entails is an expert panel and those were international expert. It's not just the United States who, uh, tackled, uh, several statements. And, uh, the idea of a Delphi process is that a, um, any kind of statement that it's run through it, pretty rigorous process. Like this was several rounds.

[00:13:55] So voting, uh, represents, um, [00:14:00] you know, it represents the result of, of multiple people thinking, you know, experts around the globe thinking the same way. So it's really a nice way. And you know, not non of these statements is, uh, Earth shattering for us that have been involved with Cochlear implants. But you know, they're really solidifying, you know, the, um, you know, experts, thoughts on how well cochlear implants work, what, what, are problems, you know, what are things that, um, that need to be improved, et cetera.

[00:14:35] So it's really a nice process. And that was the first time I was involved in a Delphi, uh, consensus statements and process. And again, this publication is a product of that. So it was a quite, quite an intricate process. Dr. Buckman, Greg Buckman from WashU led this process for us. Right. Okay. Thanks. So, um, one thing that I think.

[00:14:56] Comes out of that. And I know you're a member of the, [00:15:00] um, American cochlear implant Alliance and they came out with almost a Q & A and a about some, um, different things about adults with who might be candidates for cochlear implants. And one of the, um, Q and A's was basically, um, talked about that adult. Um, typically.

[00:15:24] My wait about 27 years. Um, before they go on that path to a cochlear implant, I feel like that's a, that's a lot of years that they might be. I don't want to say wasting, but you know, the quality of life might not be the same if they would have explore that earlier. So why do you think adults wait so long to even go down that path of.

[00:15:53] Looking at a cochlear implant or getting a consultation for a cochlear implant, you know, it's a [00:16:00] multi-factorial and it's really, um, reflects what we see in clinic. Although 27 years sounds like a whole, a whole lot. Right. But you know, there's several problems with, um, within the. , you know, what's known about cochlear plants, uh, and we can break it down.

[00:16:20] One is certainly, and you know, you, you, you probably waited a little bit too, right? I mean, and everyone does, I would say right. And the most common. Comment. I hear in clinic, you know, it would be, see patients that'd be implanted into like yourself. Now we usually see folks after surgery once or twice, and then really just once a year.

[00:16:39] Right. And our audiologists do the majority of the work. And so for us, what I call installers, right. It's um, it's really, um, you know, we're not intimately involved. Well, your audiologist, but what I would say the most common thing I hear about a year or two after [00:17:00] surgeries, I can't believe I waited that long.

[00:17:02] Right. And that's sort of something we hear commonly, I don't know how you feel about it, but we can talk about that later. And, um, but it there's some, there's some psychological barrier to give up, to give up something. Right. And for a lot of folks, is that residual hearing, like you can still hear. You can't maybe not understand speech well, but you know, it's, you still have some function.

[00:17:26] Right. And, um, it's just really hard for people, for anyone really to give up something that still works on what's. Right. And we see that specifically with folks getting a second implant. Right. And. Uh, you know, really feel like they don't want to do that. And you look at the audiogram and there's almost nothing there.

[00:17:47] And you're like, why did they hold on to this little bit of the 110 DB threshold? Right. And it's like, well, they can hear the dog barking. Right. So those are all things that are, that are real. And they they're relevant for a lot of [00:18:00] folks for some they're not so much, but it's, it's certainly interesting to hear stories.

[00:18:05] About why that is and why people wait. Do you know the other thing is there are a lot of myths out on cochlear implants. Do you know to the surgery takes four or five hours? And a myth, you know, that's, uh, it's really just the 45 minutes, uh, surgery at this point, you know, maybe an hour, but you know, it's really a much different procedure than it was when I started it.

[00:18:27] Right. And the other thing is that, you know, there's, there are myths about, you know, the risks and those are predominantly. Circulating in, you know, with regards to pediatric client plans, you know, and there are multiple factors for that as well. But, um, I think the, the, the, the issue of giving up residual function with a cochlear plan is certainly, is certainly an issue.

[00:18:57] Maybe one thing that's worth mentioning is. We're [00:19:00] not very good about predicting how well people will do with a cochlear implant. Right. We have a hunch and there are certainly some people who we predict they wouldn't do well, and then they do. Okay. But you know, the scary part is that some people who we feel like would do great with a cochlear implant, do not.

[00:19:20] Right in bad performers are certainly a huge problem for cochlear implants. And we try to, with some of the research I've been doing and others have been doing over the years, right. We try to minimize the risk for patient. Right. So I think we use. For all as a, as a physician, as a surgeon, right? Your biggest fear is making anyone worse.

[00:19:42] Right. So I don't want to take that a residual hearing away from you, and then you can hear worse. Right. And that's really why our candidacy criteria are so strict. Right. We really want to just tackle people who are absolutely unable to use the hearing in a meaningful way. [00:20:00] And, um, so it's, it's certainly, we're sort of part of this process.

[00:20:05] And, um, uh, patients' fears are part of the process. Um, understandably so, um, I think as a surgeon, it's always easy to say what a surgeon. Not a big deal, right. Because for me, it's not for start for our patient is a different story. Right. And, and, um, uh, but certainly, uh, those are some of the facts or, yeah, no, I mean, you know what you said about people waiting and I'm an audiologist that works with a lot of kids that have cochlear implants and, um, being on the patient side has really made me realize, um, The decision and the emotion that goes into that decision making process, whether it's for your kid or yourself, um, when you're actually the patient, it's a lot different.

[00:20:51] And I would say I probably, I did wait, um, probably two years longer than I should have waited. And I mean, and [00:21:00] when you compare to the 27 years, I ahead of the game, um, but I'm somebody that’s very informed about it and yeah. Uh, I think, you know, because I can share this and, and it's my audio gram, but I have essentially normal hearing in the low frequencies.

[00:21:19] So even without my hearing aid hearing aids, I was hearing a lot of things. So I was really scared to give up those little bit of hair cells that were still left in there. So I think every decibel I, um, Counted on. And I mean, I remember coming to that consult appointment with you or with you and with my husband and having that real conversation about candidacy and, you know, All of that.

[00:21:48] And that kind of leads me to my next question is, um, you know, candidacy has changed over the years, um, from like what we talked about earlier. Like [00:22:00] having pretty much no hearing whatsoever, um, to an audio gram like mine, where you have. Pretty much, you know, there's ski slope looking audiogram with a lot of residual hearing.

[00:22:12] Um, can you tell us a little bit more about the research and, and the surgery related to hearing preservation now? Absolutely. So, um, as I mentioned earlier, you know, that, uh, giving up hearing and traditionally, uh, maybe for some of your listeners, so traditionally cochlear implants are unable to preserve.

[00:22:35] Right. And, um, I was fortunate that in my residency, in Frankfurt, Germany the guy who, um, invented really hearing preservation and then using that hearing, um, was a guy that was there and Dr. Van Alberich and he ultimately retired, but. Uh, his, uh, the sort of paradigm of electro acoustic stimulation obviously [00:23:00] relies on hearing preservation.

[00:23:02] And it's really interesting that, um, we didn't think that we could save or preserve hearing with cochelar implants, you know, cause when we opened the , you know, we're all born with one set of hair cells and the thought was that by inserting that silastic. A piece, you know, which is really the electrodes right into the coal plant that we would ultimately damage it.

[00:23:26] And that's not far from the truth even today, but we've um, so over the past, really two decades, have provided us with improved electrodes, you know, smaller, smaller, electrodes, um, more flexible electrodes that we can insert into the cochlear. And we've learned a surgeons, right? It used to be done to just make a big hole in cochlear and just insert the electrode.

[00:23:51] That's very different now where we're, we're very gentle. We take. Time with electrode insertion and we have this monitoring [00:24:00] system that's available and it's going to be used more and more. So we're just much better preserving here right now. How perfect is that? Certainly not perfect. Right. And as a, as a with future.

[00:24:15] Developments. We hope that we can further refine that technique, for example, where someone like you, maybe two years earlier, right. Where you still had good hearing, but you're like, well, um, I'm I need some clarity and high tones when I'm talking on a phone or whatever, right. That you would not be scared of getting a cochlear implant, because I could tell you when you come to me in clinic that Hey, I think I can just like a hearing aid, right?

[00:24:40] You, you, you add something with a hearing aid you add hearing, right. And when you take it off, it's the same. Right. And ultimately, I think that's where cochlear implantation needs to go in order to, uh, to, to gain further or broader application, uh, you know, um, use, you know, into who knows maybe it's worthwhile that about only [00:25:00] three to 5% of cohort implant candidates.

[00:25:04] Actual receive one. Right. Which is, which is kind of mind boggling and crazy. But, um, there's, it's a huge bit, not that, but you know, again, it's more of a tutorial, but there's so many factors that prevent folks from getting a cochlearplant. Right. The first one is what do you trying to eliminate with your podcast?

[00:25:23] And then, you know, That, that the word gets out, but you know, there are other ones too. Right. So I think for, I mean, maybe to complete that list, you know, so a lot of folks have financial considerations on cochlear plants. They don't know that, you know, Medicare and then some state Medicaid, you know, pay for it.

[00:25:42] And, uh, so those are all really important facts. Yeah, no, I agree. A hundred percent. So, um, Another thing that kind of goes along with this is making decisions. And we talked a little bit about those who are not good users of [00:26:00] cochlear implants, for whatever reason. Um, but as professionals, you know, we're telling our patients and families that a cochlear implant is not a quick fix.

[00:26:11] Um, so what is some things that you emphasize to your patients and families during that cochlear implant evaluation process in order to set them up for success? So that, that we don't have users non-users I guess. Right. So obviously non-users are our biggest nightmare, right? Uh, because then we've done something that they cannot utilize.

[00:26:35] And so counseling is important and realistic expectations are important. Now, uh, we always say, well, how realistic? And we try to gauge our realistic expectations are I can tell you from my, from my experience, that realistic expectations are often not realistic. Um, it's just, you know, it goes along with just the human nature of having hopes.

[00:26:56] Right. And understanding how socially isolating hearing aid [00:27:00] are, uh, hearing losses oftentimes, especially for really profound hearing loss is right. It really is isolating a lot of adults struggle with social isolation and associated too. So I think it's just, people have high hopes, you know, it's really their only chance oftentimes.

[00:27:15] And, um, so it's always easy for us to say, well, that person doesn't have very realistic expectations, but it's really, it's really hard oftentimes to, to curb your expectations or your hopes and when that's, what you're looking forward to. So, uh, just to say that right off the bat, but what I would say is that.

[00:27:32] Um, we, uh, counsel and audiology is really at the center of this. I would say, you know, you know what our counseling entails is the different devices, the different manufacturers. So we let patients choose their device. You know, how to, uh, how. What the, what the process of, uh, the equipment batteries, et cetera, entail, you know, so that people are not so surprised by that fact, you know, what kind of processes are out there, how [00:28:00] big they are, uh, let them touch it, feel it, you know, you see this goes behind you a ear.

[00:28:05] Um, so I think those are all important things. And, you know, the things that for us as medical providers that are often simple things. Right. But they're everyday things, right. That do matter. And, um, so we, we try not to just counsel about the, the hearing and thresholds and MCLs and all that kind of stuff.

[00:28:24] We really try to counsel the real life kind of implications, I think from expectations, going back to that, uh, we do tell folks that it's a, it's a, it's a process. That's for some people it's really not a lot of long process, right. From, in terms of appointments and all that. There are a few appointments, especially early on once the once the current levels are stabled and it's really just, you, you won't have that many appointments.

[00:28:48] Right. But I think would be tell folks, is that the more residual hearing you have, typically, even if it's on the other side, usually you have to force yourself more to use it. Right. [00:29:00] Cause it's a different hearing. You probably can attest to that. And, uh, you know, again, that is a process. It takes some training, right.

[00:29:09] Then multiple resources for training, the easiest one being, just watching television with your captions on. But you know, there are more sophisticated ones too. And, um, that, um, you know, surgery wise, we counsel that it's a small outpatient procedure that. Age is really not a contraindication. And, uh,  a lot of people come in well, I'm 87 years old.

[00:29:33] I thought you wouldn't do that. That's not true. Right. And debt. Um, there's going to be some pain after surgery, but overall people heal very well. And if it's, if it's done properly, you know, one thing. That always comes up is what I'm going to shave a or I personally don't at all. Uh, you can probably confirm that we just brush it back and all that.

[00:29:55] So it's, it's just surgery wise. You know, [00:30:00] again, it's easy to say that as a surgeon, but we're um, I don't think it's too. It's it's too. Right. Yeah. And I think being a patient, um, and I think maybe a lot of people feel this way. The first hesitancy is like the surgery. Um, and you know, going through that process and, you know, after being through the process, I realized that like, the surgery actually was the easy part for me.

[00:30:31] Um, uh, once, uh, the recovery, um, it was everything after. And like what you said, you know, um, I have Dr. LePrete as my audiologist and I feel bad for her having to have an audiologist program an audiologist. I'm probably not the best patient ever, but I give her, um, a lot of kudos for, uh, all of the appointments that she goes through with me, but I, every time it it's.

[00:30:56] Hearing something new. And to know that your brain can [00:31:00] go from chirps to beeps and whistles to making sense of the speech is quite amazing that you can go through that. And I, I really do feel that patients, whether they're itty bittiies to older adults, need to understand that. That listening, therapy, and then having somebody coach you through that is critical for this success of, of, of the implant, especially if you're trying to integrate two different signals together.

[00:31:30] Um, I think that has to be a, yeah, absolutely. And I will add here, maybe Carrie that. Um, I feel that our counseling is good and it's, it's important, but I think maybe hearing it from someone who just, who just recently went through the process. Uh, maybe not just recently, but it went through the process period is probably pretty, pretty powerful because it's that different perspective that frankly I don't have.

[00:31:58] Right. And, um, so, [00:32:00] uh, we, we often try to, you know, get patients, uh, with  connected with candidates, you know, and existing patients. Yes. And, you know, I'm always willing to talk to someone who might be going through that process because it is scary, but once you get through it and just knowing what the expectations are, I think I, I important to you and we actually see that a lot, um, pediatric world or pediatric cochlear implantation.

[00:32:31] Right then. Um, , it's just such a big decision in such a pro such a more involved process, obviously, because we just can't test. Baby's hearing like we can test your hearing, right. So there's obviously much more involved and, uh, getting, getting a peer system in Place is, is, is, uh, in my mind critical.

[00:32:52] Yeah. I mean, I think that's been one of the greatest blessings of, of all of this being an audiologist and a cochlear implant [00:33:00] patient, um, is to be able to counsel families, even though my journey is going to be much different than a child. I still have another perspective that most. Professionals don't have.

[00:33:10] And also I've been able to meet people all over the world because they've read my blog and they reached out to me in other ways, um, who are adults who are considering the process. That would been a great connector that way, too. Yeah. So you're sharing your story is fabulous. And, uh, you know, on behalf of everyone, On really in the field.

[00:33:29] We really appreciate that. And it's people like yourself will make a difference. Right. Well, thanks. But, so my, my one other question that I do have for you is that you have been, like you said, involved with cochlear implant since the 1990s,  is that. And so, um, for quite a few years now, what do you think the future of cochlear implants holds and what kind of gets you excited?

[00:33:55] Do you have a vision or a thought process about that? So, first of [00:34:00] all, maybe not directly linked to cochlear implants is the future of hair cell regeneration. Right? Because we get asked that question. It comes up all the time. Right. And ever since I've been involved with cochlear implants again, since the 1990s, it's going to be in over 20 years.

[00:34:17] Right. And now if you ask someone it's going to be another 20 years. Right. So if, really, if my answer to, to patients and candidates is that don't wait for that. It's not going to happen. It's. You know, just fix your hearing right now. Cause cause you brain and your psyche you're you're you're you as human being need to hear.

[00:34:37] Right. So I think maybe, maybe one, uh, one word on that. Um, I think future developments are again where we can, we can improve a hearing preservation capabilities to the point where we can preserve your. Reliably on everyone who needs to have to hear them for service. Right? So as we expand our criteria and were implanted, we've taken on more and more residual hearing places with more and more [00:35:00] residual hearing, we need to, we need to be able to preserve it reliable, right.

[00:35:04] And not meaning, not meaning good. You say, Oh, an 85% or 90%. Uh, I want to say it like in 99%, it's almost certain that we can preserve your hearing. So I think that's really critical and I hope that the future will bring more technologies and techniques, et cetera, and devices that can allow us to do that.

[00:35:24] Right. The other thing is, um, I, do, uh, do you feel like, um, Well, some people don't care about it. I do think for the younger generation, it's ultimately going to be important to have a fully implantable cochlear implant. And I know there's several efforts on the way and really to technology has matured to the point where it's possible.

[00:35:46] Um, so I'm looking forward to a fully implantable cochlear implants. It's it's around the corner. I think it's not even that. But it's something that, uh, will likely come at some point, you know, there are certain [00:36:00] disadvantages in certain issues. And what I always say, there's some technology that may allow you to, for example, if you, if you have a cochlear implant or to even, did you want to step into the shower?

[00:36:12] You would jump into the pool. Right. But you don't, you take them off, but you can still here for another 20, 30 minutes. Right. That would be great. Right. It doesn't have to be maybe great hearing, but you know, some kind of, some kind of it would be called invisible hearing. Right. Will be great. So you don't, you don't take your implant off.

[00:36:28] So I think those are all, uh, pretty, um, doable steps, um, that, uh, likely going to, uh, see the light here in hopefully in a few years. Uh, but I know, and I know that it's been worked on it's, you know, their, their efforts, even from the non-traditional companies, but there's some other startups that really work on this.

[00:36:51] So, uh, I think more. Or two done. It's great. Um, it's great to have that friendly competition [00:37:00] between the manufacturers. I think it, it, it makes things better, right? It's good for the consumer. And, uh, I hope that that goes on. Right. And one thing maybe a lastly is as we as professionals are better at predicting future performance with a cochlear implant so we can avoid bad performance, right?

[00:37:23] I'd think bad performers or bad or not good for cochlear iplants. We need to identify people, find, uh, you know, alternatives and, uh, Hmm. I think it's really critical to identify folks who may not do well with the cochlear implants early on in the so, uh, we can, uh, we can again and find alternatives on, on, on the other side, if someone comes in and they have 60% or discrimination, but we can guarantee 85%, right.

[00:37:53] Then all of a sudden that patient becomes a candidate. All right. So I think it would be really critical for us to have a better [00:38:00] understanding of these interactions and electrode placement. So there's a lot of research to be done in cochlear implants, and some folks argue it's very details and it may not make it, you know, there may not be a big jump in performance possible.

[00:38:13] I would disagree. So I think, uh, the future for cochlear implant plants is bright and hopefully we can, um, you know, we can reach more people with this technology. Yeah. Then it is all exciting, uh, information there. Kind of think about for the future too. So there anything else you want to add? Dr. Adunka, how can people get ahold of you if they're interested in maybe pursuing this route?

[00:38:39] Yeah. So, um, How to get ahold of me. So I'm at Ohio state and Children's and nationwide children's in Columbus. So, um, just look me up online, come make an appointment, come see me or one of my partners. I mean, if I'm blessed, they have a great department on both the pediatric as well as the adult side. So they're great [00:39:00] doctors of audiologists.

[00:39:00] So it's just really a great team and it's a pleasure to, uh, to be working there. So I'm just one of the guys, right. And it's really just, uh, it takes a village. Right. So, um, I think I do want to mention that, that, um, we're pretty blessed with just having great teams. And so what I want to say is that, uh, for us as providers, right?

[00:39:21] It's um, we recognize that it's an emotional journey for patients with hearing loss. And again, hearing loss, we see that a lot that patients are really emotional about their hearing loss. Maybe not so much to hearing loss and The social isolation hearing loss comes along with, you know, and, uh, I think, you know, it's, um, it makes my day, if I see someone like yourself, but other people too, who maybe were less functioning before functional before that, and then they can go back out again and the restaurant is a Kroger or, you know, buy groceries.

[00:39:55] And ultimately we integrate themselves. So, um, for [00:40:00] us, it's just really one of those things that make us go to work every day. And it's just a great honor, honestly, it's just a great honor to make people hear again. And, um, cochlear implant, a great, it might be an easy, uh, surgery for us, but, uh, Seeing that patient journeyf pan out, um, is just really priceless for us.

[00:40:20] So it's great. Well, I just want to thank you for being on today and being a part of today's podcast. I think our listeners will have a deeper understanding of. The widening candidacy option for individuals, um, and maybe take that next step and, and realize that it is a journey and it does take time.

[00:40:42] So again,  other, thank you for listening. Yeah. Thank you. Thank you. Listen for listening and be sure to share this podcast. If you found that it is helpful with your friends and on social media and join our Facebook page. [00:41:00] Thanks a lot. This has been a production of the three C digital media network. .

Episode 10: EmpowEAR Audiology - Dr. Beth Walker

[00:00:00] Welcome to episode 10 of empowEAR audiology with Dr. Carrie Spangler.

[00:00:16] Hi, everyone. Welcome to the empowEAR  podcast. My name is Dr. Carrie Spangler, and I'm your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges and this vibrant and hearing world. I just want to thank all of you for listening and I hope that you will subscribe that you invite others to listen and leave a positive review.

[00:00:39] I also want to invite all of you to engage on the empowEAR audiology Facebook page. So let's get started with today's episode of empowEAR Audiology.  As educational audiologist. One of the words that I really have a problem with in our profession is the word mild. And if you'd look up the [00:01:00] word mild in the dictionary, you will find that.

[00:01:04] Um, as it relates to illness or pain and it's described as not serious or not dangerous. And I feel like this description has significant consequences. If we equate mild hearing loss as not serious. So today, um, the podcast, I am really excited to have Dr. Beth Walker with me. And I'm going to tell you a little bit about Dr.

[00:01:31] Walker before we get started. So Dr. Walker is an assistant professor and the department of communication, sciences, and disorders at the university of Iowa in Iowa city. Iowa. And she's the director of the pediatric audiology lab. Her research focuses on pediatric aural habilitation, specifically examining factors that relate to individual differences and listening and language outcomes for children who [00:02:00] are deaf or hard of hearing.

[00:02:02] She is an investigator on a number of research projects funded by the national institutes of health, including the 10 year longitudinal investigation. The outcomes of children with hearing loss study, she has authored over 50 peer reviewed publications and coauthored a textbook on pediatric amplification.

[00:02:24] So it is my honor and pleasure to introduce to all of you, Dr. Beth Walker. So welcome. Hi, thank you for having me could see our faces right now. Cause we have these giant grins on our faces and we can see each other.

[00:02:49] exactly. Yes. So

[00:02:56] So  how we met. So we were in Florida, it [00:03:00] was the educational ideology association and they had this little, it wasn't Cheryl DeConde Johnson had this little, it wasn't a conference. It was like this little mini meeting before I remember that. And I can't remember where we were in Florida. I remember it was super hot outside and I was, yeah, it might've been.

[00:03:20] And we, so we were at that meeting and I that's where I, that's where I met you the first time. Cause cause then honestly I remember that we went to the bar afterwards

[00:03:36] each other a lot better. I only came for that day. I didn't stay for the conference. I just came for that little meeting that one day. Okay. We're off each other ASHA and Memphis, right? That was another one. Oh yeah. That Memphis one. Yeah. And then I [00:04:00] got to bring you to Ohio and then I got to come to Ohio last year.

[00:04:04] Pre COVID. And then I was supposed to be in Ohio this fall too, for the, Oh, I don't remember what it was for. I knew I was supposed to be in Ohio. Um, and I think that got bumped off to next year. Something I can't remember. Sorry, we'll be back in Ohio again. So, because we will get connected again, for sure.

[00:04:27] So I have another question for you before we kind of dive into that. The meat of the podcast, but could you tell all of our listeners how you actually got started into the audiology?  Is it a good story?  I wondered if you'd asked me this question. So I don't know if it's a good story. Like most people, I kind of fell into audiology.

[00:04:49] It was not like I dreamed of being an audiologist when I was a little girl, but what I. tell All my students was I actually, when I was a little girl, I dreamed of being a detective [00:05:00] and an author. And my favorite things were Nancy Drew mysteries. And so I loved reading them and I wanted to solve mysteries and write books.

[00:05:10] And then I got to grad school realize that was not really a very good or not grad school. Undergrad realized that wasn't a very good career plan. Um, so I went into psychology instead, and then from psychology, somehow fell into speech pathology and audiology. Um, I think what actually happened was I was in psychology.

[00:05:29] I knew I wanted to go into more of a healthcare field and somebody on my dorm room floor was like, If I don't get into pharmacy school, I'm going to be a speech pathologist. And I thought, Oh, that sounds cool. I'll try that too. Cause I knew I didn't want to stay in, I didn't want to be a psychologist. So I ended up going into speech path and then kind of like what happens with a lot of people.

[00:05:53] I was taking the communication sciences and disorders classes and got really interested in audiology. [00:06:00] Um, through that, even though I thought at first and with me, the thing was, um, I honestly couldn't decide if I wanted to be a speech pathologist or an audiologist. And in the back of my mind, I still wanted to be a detective and an author.

[00:06:13] So what I ended up doing was, uh, getting dual certification. I'd never made a decision. I just became, I went to grad school for speech path and audiology. I did. Two CFYs in Indiana. So I was, um, I went, I worked at Riley children's hospital and did a CFY and speech pathology then audiology, and then ended up getting my PhD , which is where I was able to become.

[00:06:38] It sounds corny, but that was where I was able to become a detective. And. A writer. So I really do feel like that's what I do. Like, I feel like it sounds, it's so cheesy, but I feel like when I'm doing research, I'm really like, kind of, I've got all these facts and I can put together this puzzle. And that's what I love about research and I still get to [00:07:00] do the writing aspect of it, but I get to do it in this field that I think is super cool, which is audiology and speech pathology.

[00:07:07] Exactly.

[00:07:11] Just, um, I think we're speech pathology and audiology really overlap so much. So it's great to have both perspectives with all of your research. Yeah. And that's why I am really glad I ended up doing both because what I'm really interested in is how hearing loss impacts listening and language and reading development.

[00:07:34] And so I feel like if you're going to be a good pediatric audiologist, you need to understand the language. Out of things. And if you're going to be a good speech pathologist that works with kids, with hearing loss, you need to understand audiology. So that would not, I wouldn't recommend nowadays the dual certification, because it would just take too darn long, which is unfortunate.

[00:07:56] Yeah. So one of the things that [00:08:00] you have been very involved in, and I didn't realize it until I've read some of the bio is the Outcome for children's with hearing loss study for over 10 years now. So can you tell our listeners a little bit more about how you got involved with this study? So this was just.

[00:08:20] Actually, I was kind of in the right place at the right time. So I was working, I was finishing my PhD. I was probably a year away from finishing my PhD and I was working as a speech pathologist on the cochlear implant team over at the hospital. Yeah. At the university of Iowa and I was actually doing, um, I love doing transcriptions like phonetic transcriptions, which sounds really weird, but I just think it's kind of fun.

[00:08:44] And so somebody was actually Bruce Tomblin. Who's a professor here at Iowa was paying me to do these transcriptions for him. And so I happened to be down in his lab one day and his project coordinator looked at me and she was like, Hey, you're an audiologist too. Aren't you? And I was like, yeah, [00:09:00] she's like, Oh, we have this new research.

[00:09:02] grant call the outcomes of children with hearing loss study and we need an audiologist for it. And she handed me the job description and I looked at it and it was like, I think I looked at it for like 30 seconds and I was like, this is what I want to do. This was my dream research project to be involved.

[00:09:23] Because it was looking at children with mild to severe hearing loss. It was working, it was a multicenter study. So it was working with people at Boys town National research hospital, and University of North Carolina. And it was all these people. I kind of knew. That honestly, like some of them, I had academic crushes on like Mary Pat Moeller.

[00:09:42] Yeah. But I didn't know him really well. And so I, but I knew like this would be such a cool job to have, because I get to work with all these people that I had really admired. Um, also at North Carolina, um, uh, melody Harrison was somebody at North Carolina and she was another person I just looked up to for such a long time.

[00:10:00] [00:10:00] And so I think I went home. Um, and I told my husband, I'm like, okay, I'm changing jobs. I'm going to take this job. They hadn't even offered it to me, but I was like, okay, this is what I want to do. And so that was how I fell into it. It was real literally, like I happened to be in the right room, all the stars aligned and cause they had just, I think they just started the funding for the project.

[00:10:25] And so that would have been in 2008. So actually we're going on now? 12 years of the study, we didn't start collecting data till 2009, I think. But yeah, the funding started for the grant in 2008. Wow. And it's such a, all of the research that all of you have done has been so instrumental in everything that we know now as audiologists and educators and those working with kids with hearing loss, um, but kind of going back a little bit to 2008, what was.

[00:10:59] One of [00:11:00] the main question that you and your team and the researcher has had, um, for going into this study? Well, the main thing was, um, there was a lot of research out there on children who are deaf children who use cochlear implants. And we really didn't know very much about children with mild to severe hearing loss, particularly, uh, what we call the current generation.

[00:11:23]  of kids, kids who were born after 2000, who had access to early intervention, um, were identified at fairly young ages, um, had been fit with hearing aids. We didn't really know if those kids were able to keep up with their same age hearing peers, or if they were showing delays in terms of their language skills.

[00:11:44] So, and we also, it sounds weird. I always say this when I give talks, we really didn't know what the effect of hearing aids were on outcomes, which sounds stupid. Like we would really hope that hearing aids would make a difference, but we didn't, we honestly didn't have evidence [00:12:00] for that because. Almost all of the research studies that have been done in the past, past on children who are hard of hearing, hadn't really described the hearing aids very well.

[00:12:10] So it didn't that we would say, okay, there were 20 kids in this study. Some of them had hearing aids. Some of them didn't, it wouldn't say anything about how much they wear their hearing aids or how well fit the hearing aids were with the audiologists. You using real ear measures to program and fit the hearing aids

[00:12:29] And so those were the questions we really had are the kids able to keep up with their hearing peers because we knew they were pretty much all using spoken language and they were pretty much all in regular education settings. Um, and then, um, what impact did the hearing aids have on, on there Success. So, and what made some of these kids?

[00:12:49] We knew there was going to be lots of variability. So what made some of these kids succeed and what made some of them struggle? So, right. So going back to [00:13:00] some of the, not the. I guess in variability, what would like the ages that the kids and how many years did you follow these kids? And, and you said they all had hearing aids.

[00:13:11] So then we no cochlear implant. So, uh, the way the study started, the kids could be, we had what was called an accelerated longitudinal design. So the kids could be anywhere between six months. Age at seven years of age, when they enrolled in the project, which was going around like 2009, 2010, and then we followed them longitudinally.

[00:13:33] So we started off with a wide age range and that gave us cross sectional data from basically infancy to. First grade, but then we had longitudinal data that tracked. So then we could track their language growth, their listening growth, um, just how they were doing over time. Um, and we're still following these kids.

[00:13:52] So now a lot of, some of them are like juniors and seniors in high school, which is crazy to me. [00:14:00] Um, but, uh, yeah, I mean, some of them were six or seven years old when they started and it has been. 10 years. Uh, we just completed a study with a lot of these kids participated in that study on listening effort. It was, and it was a project I'm listening effort.

[00:14:16] Um, and then we are hoping we submitted a grant last week to the national institutes of health to try to follow these kids into junior high and high school. Yeah. That's important too. I know it is. And I realized I. I realized writing that grant there, we don't know much about adolescents at all. So, um, I hear anecdotally that within this makes sense to me.

[00:14:40] Um, when they get to junior high, they don't want to wear their hearing aids or they don't want to wear the remote microphone system. Well, but, um, but we don't really have good evidence research evidence for that. And if they do decide not to wear their equipment, we don't have evidence for why or what impact that has.

[00:14:59] So, [00:15:00] um, so I'm excited. I hope, I hope the NIH likes the grant. We never know . One of my passion areas is teens. Then I feel like that would be great information. Yeah. So one other question, like how many kids did you recruit for this? And I'm sure it's been over time too. And how many have actually stayed in the study?

[00:15:23] So we recruited, uh, three, well, okay. So we have. I want to say it was like four to 500 people responded to participate. We did not. So the kids in the study all had to have a bilateral hearing loss. We didn't include anybody that had a unilateral hearing loss. Initially we did. And then we didn't keep following those kids.

[00:15:44] So everybody had a bilateral hearing loss, studied. It all had to be between the, in the mild to severe range. And, uh, they couldn't have any additional disabilities or, um, English had to be their first language. And also we, we wanted to look at the impact of hearing aids. [00:16:00] So we did not include kids that had cochlear implants when they started in the study.

[00:16:05] We had some that got cochlear implants as the study progressed. So. With those criteria, like I said, we had about 500 people for 450 that. Contacted us. And with the inclusionary exclusionary criteria, we had ended up with 317 kids that were in this study that actually enrolled. I collected data on them because some, um, ended up not qualified because they had additional disabilities or had a cochlear implant.

[00:16:31] And then we also had a group of 117 children with typical hearing that were matched on socioeconomic status and age. And that was ended up being really important because one of the things that we've found pretty consistently as well, when we've looked at the data of our kids who are hard of hearing that were in the study.

[00:16:54] If we just look at them compared to test norms, like. How they did on the Peabody picture vocabulary test, they look [00:17:00] like they're doing within the average range, but when we compare them to our 112 group of hearing kids, um, they're doing significant they're significant delays compared to that population.

[00:17:11] So that ended up, it was good that we had that normal hearing control group. Um, in terms of, uh, retention, like who has stayed in the study, I want to say we've. I can't remember exact number and I should know this because it's had to go in the grant. Um, I think we've kept about 200 of the kids in the study.

[00:17:30] Some of them are no longer in the study because they didn't get cochlear implants and we quit following them. Some of them moved away. Some of them we lost to contact. But we've still got a lot of the kids that started in the original study that we're still following. So contact with. Yeah. Right.

[00:17:46] Especially over that period of time, be able to keep, you know, get out data and information about it's helped at a lot of the some of the original people that started [00:18:00] on the project as working on the project are still with the project. So I'm still on the project. Um, Ryan McCreery, who's at boys town. He started on the project pretty early and Mary Stratford, who is his, uh, research audiologist and his, um, director of his lab.

[00:18:15] She's still on the project. So we have a lot of the original, um, which helps. Yeah. Yeah. So, so I think one of the things as an educational audiologist kind of being out in the field is that I always. Have this reaction from teachers and sometimes parents and others, even speech pathologists sometimes.

[00:18:40] And they're like, they read a report and they say, Oh, who just has a mild hearing loss. Or, and for me that like boils inside of me because I understand the impact of my mild. Um, but. I guess I wanted to ask you, you know, what are some of those key [00:19:00] factors that you found in this study about the impact of mild hearing hearing loss and access to language basically?

[00:19:10] Yeah. So one of the early papers that we published, well, one of the first papers we published as part of the OCHL outcomes of children with hearing loss study, which I call OCHL just for your. The ads, people at Boys town, for whatever reason, call it OCHL, which takes me too long to say, so I call it, um, I'll I, when people call it OCHL.

[00:19:32] So, uh, one of the first papers we published was looking at how much kids wear their hearing aids. And the big takeaway from that was the kids with mild hearing loss were wearing their hearing aids. So that was one of the big predictors for hearing aid. Use time was the severity of the hearing loss. As the hearing loss was more severe.

[00:19:50] The kids. More, their hearing aids more often. And we measured hearing aid use from parent report and from a data logging with the hearing aid. And [00:20:00] so from that, we did a follow up paper because we were really interested in like, okay, well maybe these mild kids don't need it to wear their hearing aids. I didn't know.

[00:20:10] Like maybe we're over hearing aids are expensive. We ha I've seen as a cause I, as a clinical audiologist, I've seen. pushback from physicians and other audiologists sometimes about fitting. Hearing aids on kids with mild hearing loss. Um, and so we, so from that, I decided to look at, um, just our mild cohort.

[00:20:31] So the kids in the study that had a mild hearing loss, and it just so happened that it, we had a group of kids with mild hearing loss who never wore hearing aids. And then we had a group and our data kind of worked out and then. A group that we're, um, about six hours per day. So they're probably wearing them at school and not a lot of people say, well, they just need a map score.

[00:20:50] Yeah. And then we had a group of kids with mild hearing loss that really did wear them full time. And we could tell from the data logging. And so we, I ended up taking that data set [00:21:00] and just publishing a separate paper on that in, I think. 2013 or 2014. I can't remember when that paper came out. And what we found was really large differences between the kids with mild hearing loss who never wore the hearing aids and the kids with mild hearing loss who wore the hearing aids full-time.

[00:21:18] So the kids with mild hearing loss were the hearing aids. Full-time, we're actually about one standard deviation. Above average in terms of their vocabulary and their grammar skills, but they look just like our typical hearing kids. Cause the typical hearing kids were also about one standard deviation above average, which gets to that issue.

[00:21:39] I was talking about where the norms don't always reflect how the kids are doing. Whereas the kids with, um, the kids that didn't have hearing aids or didn't wear their hearing aids, um, they were more like. They were about one to two standard deviations delayed compared to the full time hearing aid wearers.

[00:21:58] And then they were kind of in the average [00:22:00] range compared to the test norms. But to me, that indicates they're not really meeting their full potential. They should look like these kids. They should look like the typical hearing periods that they don't need hearing aids. And they should look like these. My other kids with mild hearing loss that are wearing the hearing aids full time.

[00:22:16] So it does indicate to us hearing aid can help even with just a mild hearing loss. Um, we had another paper we published last year, where we looked at called hearing aid dosage, where we measured, how much the kids were wearing their hearing aids in combination with how much access they got through the hearing aids.

[00:22:33] Um, Based on the speech intelligibility index. And we kind of see this, the data seems to like acetone e around speech intelligibility, index of 0.8 or 80%. And what that means is kids who have access with without no hearing aids on unaided. Audibility. Um, if they have access to 80% of the speech spectrum, it doesn't seem to make a difference if they have hearing aids or not, or if they [00:23:00] wear the hearing aids full-time or not.

[00:23:01] But for the kids that were, that had, um, less than 80% access to the speech spectrum without hearing aids on, they seem to need the hearing aids. So, so there seemed to be kind of this like split in the data. Like there is a point at which you have a mild hearing loss and you may not need to wear hearing aids, but just grouping it all in this big category of mild.

[00:23:23] Doesn't really reflect that because mild is kind of actually kind of a broad range. So, so that's where the speech intelligibility index. We're also really into audibility in this research project and how much access you're actually getting through your hearing aids. And that can be measured with the speech intelligibility index.

[00:23:42] So I just kind of reviewing some of your study before it, and you had an acronym ACCESS, so, Oh yeah. That's I can't take credit for that. That was Mary Pat. She was the one that came up with [00:24:00] that. Mary Pat is really good at coming up with acronyms and by Mary Pat, I mean, Mary Pat Moeller. Yeah. She was the principal investigator on the original OCHL study.

[00:24:08] She's now retired. She's living in North Carolina with her near her grandkids. Um, I miss her every day. Um, so yeah, Mary Pat came up with an acronym. And are you going to ask me what? I can't remember what it stood for. I can tell you what it means. That's what we've got this grant on mild hearing loss.

[00:24:27] And just as you were doing the introduction, I thought, Oh, I bet she's going to ask me about the acronym for our mild hearing loss grant. So I pulled up Facebook cause I knew I had it on Facebook. And you asked me a different acronym. Well, that's okay. We can do the acronym for mild because I didn't think, I didn't know.

[00:24:45] You have that acronym actually. Yeah. But I can't, we have so many acronyms. I can't keep them all straight. Tell me the acronym that I have for mild. Cause no, no. Let me see if I can remember the access first. Yeah. Okay. Is a for audibility? [00:25:00] Yes. Okay. One point C. He for consistency. Um, that's the third one.

[00:25:11] Let's see, I guess what's the first C I can't remember. So that gets it out of bill. Okay. Carefully fit  Hearing-aids, consistency of hearing aid use. Um, he is, uh, I know one of them is like supersized services. Is that one of them? Yeah. So, um, he was environments conducted learning. Okay. I to remember that one.

[00:25:39] Yeah, S remember one of the S's is what I want to be. So super something about supersize service. Is there something to that service provision. Oh, okay. And then another one was selected areas of language. The morphology is weakness while I did really bad with that. I got one letter. [00:26:00] Well then tell me about that one, the newest acronym.

[00:26:05] So the newest acronym is called fast track. And this F a S T R a K  And this is our new grant that we just got funded through the national institutes of health this summer. And it's looking at kids just with mild hearing loss. And I don't mean just a mild hearing loss. I mean, Only mild hearing loss is the focus of the research study.

[00:26:35] Uh, so, and a lot of it came out of the research we've been doing where we, I mean, the paper that we published, looking at the non-users versus the full-time users, and then the, um, the articles that came out this past year, looking at kind of this. Speech intelligibility cutoff and what the criteria should be for fitting hearing aids.

[00:26:54] So the purpose of the fastrak grant, which stands for I'm gonna look at it, cause I can't remember [00:27:00] finding appropriate solutions to treat reduced audibility in kids. Uh, the purpose of that grant is to focus on improving diagnosis and intervention for children with mild hearing loss. And one of our, I would say one of our goals is to try to do like we're a little bit of.

[00:27:19] I don't know, our, one of our crazy goals is to try to get rid of the term mild hearing loss. Although I still find myself using it all the time, but we would, we would like to just get rid of that term. Cause it's, it's a misnomer. I just, I hate it. I use educationally significant. Yes. At times, because I feel like that can be very broad in the degrees of losses, but yeah.

[00:27:47] Yeah, yeah. Trying to do we use educationally. That's what I've always said to use the term educationally significant. Um, the other thing that we're advocating for audiologists to do in counseling is [00:28:00] to talk about what is the child's speech intelligibility index. Because to us that seems like a really salient concept to parents.

[00:28:06] Like how much access does this child have without hearing aids? The speech spectrum, which is what the SII can give you. And then how much access do they have with their hearing aids? So you could have a kid with a mild hearing loss. Um, we looked at our dataset and if we took all of our mild kids, um, the average SII was around 0.6.

[00:28:27] So they, on average kids with mild hearing loss access to about 60% of the speech spectrum and with hearing aids, they have access to about 90 to 95% of speech. And, and we feel like that concept can really click with parents because one thing, again, as a clinical audiologist, I used to, I was at the VA a long, long time ago, and people would always come in and they'd say, What percentage hearing loss do I have?

[00:28:53] And that would drive me nuts because I'm like, well, we don't measure hearing loss as a percentage. And I'd always cringe when I get that question [00:29:00] or I'd have someone come in and say, well, the doctor told me I have a 50% hearing loss. I'm like, where, where did you get that? Like, who told you that? Um, but then I started realizing when we were really looking.

[00:29:12] This SII stuff. I mean, that really is what the speech intelligibility index is telling you. It's not saying you have a 50% hearing loss, but it's saying that's how much access you have to the speech spectrum. And I close when you're close to the speaker at a conversational level. So it's not taking into effect, background noise, or distance

[00:29:33] And that's why I think it's good concept for counseling with parents, because you can say, okay, when you're speaking to them from a meter away at a conversational level, they'll be able to pick up maybe about 60% of what you say when you add in background noise. When you walk further away from your child, that SII.

[00:29:53] I is going to go down and they're not going to have, they're going to have access to maybe 20% of the speech spectrum. And this is a kid with a [00:30:00] mild hearing loss. So, so I, I think that it's, I think that the SII is brilliant and I love it. And we talk in my lab about how we have an audibility cult.  because we talk about audibility all the time in my research lab.

[00:30:13] But, uh, uh, but I just, I think it, it, it makes sense to families like to parents, to teachers too. Yeah. And just, we, and maybe that goes into my next question is, you know, we know that. These different factors need to be in place to optimize opportunities for children who have different degrees of hearing loss who are wearing hearing aid

[00:30:39] But what. Advice, would you give audiologists out there right now? Um, obviously, maybe joining your audibility, speech intelligibility cult

[00:30:58] So we all have to join [00:31:00] the cult. I have this speech intelligibility. I call it. But what advice would you give to audiologist right now? So, one thing we're trying to talk to audiologists about in this kind of, I mean, this would be changing practice, practice patterns, but you can measure the SII. You don't, it doesn't have to be part of the hearing aid fitting appointment.

[00:31:21] You can do the diagnostic testing with the baby, um, like with ABR or when we, when you do, um, VRA when the baby is six months old, you can get their threshold. You can plug that into a Verifit or some other machine, and, um, it'll calculate the SII for you. And so you could use that. You can put it in their report, you can talk to the parents about it.

[00:31:45] It doesn't have to be tied into the hearing aid appointment. It can be part of the diagnostic appointment as well, but that would take. Pretty big change because a lot of audiologist may not have access to the audioscan, [00:32:00]  machine that we use to calculate the SII. And, uh, especially the diagnostic appointment.

[00:32:06] Like you just may not have one handy. So you can't really punch the number in one thing. I know Boys town and I I'm probably gonna totally explain this wrong, cause I don't know. The details. I know Boystown has been developing a program, they call Sharp. That would be like an app that you could use to calculate the speech intelligibility index.

[00:32:24] So, um, but yeah, to have it be more, a part of the diagnostic visit would be one big change that we haven't really been doing. The other thing that I think is really important is, um, making sure that we're using either. Really are measures when we're fitting the hearing aids or simulated real ear measures like measuring the SREA and babies, as opposed to using things like, um, aided speech, aided sound, field testing, or functional, what we call functional gain when we're doing hearing aid fitting.

[00:32:55] Big thing that we found in a study was there was huge variability and [00:33:00] how wow. Well, the kids' hearing aids were. So we had some kids who were fit to target, fit to prescriptive targets for their hearing aids And we had other kids that were way off target. And, um, and the thing that we found, this was a paper by Ryan McCreery, Ruth battler, and Pat Rousch.

[00:33:17] I think again, it might've been in like 2013 or 2014 that was published in the ear and hearing. Um, but one of the things they found was it had to do with how the audiologists were fitting the hearing aids, if they were using, um, really or measures or simulated really, or measures to program, the hearing aids tended to be fit closer to target.

[00:33:43] entirely. We had very, that, that. We've had very, very few kids that we've seen that were, overfit like a couple out of 317 children who we're seeing across multiple visits. So they were wearing ear plugs at that. They were essentially wearing [00:34:00] earplugs. Yep. Yeah. Yeah. So bad, extreme. I don't know if they were, I mean, they were probably getting some audibility.

[00:34:08] It just wasn't to the, and we were using that as our targets, the DSL targets. So desired sensation level. Yeah. And we're just below target. Yeah. So what about parents? What would you, what kind of advice would you give parents who have these kids with mild degrees of hearing loss? So one of the big things I would say is, um, don't rely on their articulation skills, their speech production to tell you if they're doing okay.

[00:34:40] Because one thing we found really across all of our kids with mild to severe hearing loss, but especially the kids with mild, moderate hearing loss, their speech production sounds really good. They're very intelligible and people take those speech production skills as a sign that they're catching everything.

[00:34:58] Their language is fine because [00:35:00] sometimes it's kind of hard to differentiate between speech and language. And so we would see these kids that had great articulation, perfectly intelligible speech, and then, but they would have these underlying language deficits in areas like morphology. So adding word endings, grammatical markers, um, That, that seems to be a weakness.

[00:35:22] We've also seen some weaknesses in vocabulary. And our theory is that that's going to cascade into like problems with reading comprehension, because vocabulary and grammar are so important for reading comprehension. Once you get to junior high and high school. So we don't have evidence for that yet, but we suspect that there's that's, what's going to happen.

[00:35:40] So, so that would be one of the big things is, and I would say that for speech pathologists too, like, just because they've met, they can do the Goldman Fristoe test of articulation and not have any errors on it doesn't mean that they need to be. Out of, out of speech therapy, speech, language therapy. I mean, there's [00:36:00] this whole language component to it too.

[00:36:01] The other thing I would say that we've found is, um, just how important self-advocacy is teaching these kids pretty early on to take care of their equipment. That it's a part of them that, uh, that they like by the time they get to elementary school, they can be doing things like. Checking the batteries and, and they do need to wear the devices.

[00:36:26] So, um, but also being able to advocate for themselves in the classroom with their peers, with other teachers, I think that self-advocacy piece is just so important and some of the kids I've worked with are just so amazing. At the self-advocacy like, I just, I love seeing them because my, one of my favorite I'll tell you a little story.

[00:36:45] Um, I always say this when I'm giving talks, we had this little girl and I think she was in first grade at the time. And so for a school project, she had to talk about something that was special about her and she picked her ears and she had her teacher take a picture of her ears with her [00:37:00] hearing aid on.

[00:37:01] And, and she wrote this little passage and it said, I can't remember. It was like, um, my ears are what makes my ears are what makes me unique. My hearing aids help me hear. It was, it was something like that. And it would just, I loved how she was only like seven years old, but it was just. Like she knew that was something that made her special in a good way.

[00:37:20] Good way. And she wanted to talk about it and to talk about, yeah, we're going to empower them early on. Then hopefully when they get to that junior high or middle school period of time, they become a part of them instead of like, I'm going to take them off and I don't need them. Yeah, and I should be embarrassed of it.

[00:37:39] Exactly. I have one girl who was in junior high and we saw her not too long ago. And I said, I was just like, well, so what do people say about your hearing aids? She's like, Oh, I tell everybody that it's this cool wearable device, like a Fitbit, but it's just on my ear that it's just like, so everybody. Yeah, it's cool.

[00:37:56] It makes it it's really cool. Yeah, I'll have to remember that [00:38:00] one.

[00:38:03] And one of my other last questions would be like, what would you tell advice for educators or SLPs who are in the schools about mild own hearing loss? Well, one thing. So I already said the thing about this articulation, um, another, okay. So there's kind of two things. One thing that we've found that I think speech pathologists and teachers should be aware of is, um, that we do see this weakness in morphosyntax or grammar, particularly high-frequency.

[00:38:36] high pitch, low intensity sound. So English is not a very friendly language to hearing loss. So because like a lot of the English morphological markers are these very high pitched sounds like S so, um, plurals past tense, ed. Third person singular, like he walks to the store. Those are really hard sounds.

[00:38:57] They're just not very salient. We have, we say they don't have a [00:39:00] lot of phonetic content. And so it's hard for these kids to be able to perceive those sounds. So they may be able to produce an S sound pretty well, but they may be not necessarily recognizing when you need to use a plural marker when you need to use these different grammatical.

[00:39:16] markers. So paying attention to more syntax is really important. Um, another thing that we've found, I could say a lot of things, but because I get very excited about this topic, um, uh, is, uh, vocal with vocabulary we've found. And this, again, doesn't just apply to mild hearing loss, but we've seen this with.

[00:39:36] Kids with mild hearing loss, we have different measures. We use to measure vocabulary. A common one is the picture Peabody picture vocabulary test, which is a receptive language measure where you see different pictures on a page. You hear a target word you're supposed to point to it, the problem. And I love the Peabody.

[00:39:51] It's great measure. The problem with that is it's really only testing their surface. Of all knowledge of, of words and how it's [00:40:00] testing, how many words they know, but it's not really getting at how much do they actually know about those words? What's the depth of their knowledge. So one thing we've found, um, is that how much access they have to the speech spectrum through their hearing aids.

[00:40:13] Again, all comes back to SII will predict their long-term growth in the depth of their vocabulary knowledge. So we, and we see that they just. Kids with, um, mild and moderate and severe hearing loss, um, seem to, they seem to be catching up over time in terms of how many words they know, but they never quite catch up and how much they know about words, the depth of their knowledge and their audibility seems to be really tightly linked to that.

[00:40:41] Mm. So, um, and then there was one other thing with the mild hearing loss that I wanted. Oh, okay. So then this other thing that we've found that's really, I think is very interesting. We've seen this consistent pattern with our mild kids where, um, there we call it, we call it our sweet spot. So our [00:41:00] kids with moderate hearing loss on average look just like our typical hearing kids.

[00:41:06] The kids with mild hearing loss are just a little bit below that. So, um, and then the kids with severe hearing loss have more of a deficit. And so we call these kids with moderate hearing loss our sweet spot, and we think that's kind of, because they're probably getting pretty consistent intervention. They're wearing the hearing aids and they can be fit appropriately for their hearing loss.

[00:41:25] Whereas the kids with mild hearing loss, um, It's almost not enough. It's not enough of a delay to cause a concern, but enough that I would be worried they'd fall through the cracks. Um, so they're just kinda like coasting along, but I don't think they're really reaching their full potential. And that is probably the result of maybe not wearing the hearing aids or not being fit with hearing aids and maybe not getting consistent special education services.

[00:41:57] And then over time, that gap [00:42:00] probably widens. That's what our question. Yeah. We wonder that's why we want to look at them in adolescents, because we do wonder if that gap widens over time or not, because right now it just, it's just this, like, you can see it. If you look at any of our papers, um, especially the last couple of years we've been publishing on, um, how these kids are doing in second and fourth grade.

[00:42:21] And you can see this trend where. It's just the mild kids are just a little bit lower than the moderate kids. They really should be at the same level. They should be performing at the same level as, and that we see that, especially in morphosyntax, but we also see it in vocabulary measures and reading comprehension measures.

[00:42:43] So, um, but we haven't really tested the kids past fourth grade, so we don't know what happens after fourth grade. Okay, which is why you need to get this other grant

[00:42:58] anything like, or you [00:43:00] can't talk about a grant that you just submitted. I think I'm allowed to do that. We didn't talk that much. No, there's no embargo or anything. So is there anything that I didn't ask you that. You want to make sure our listeners know whether their parents are educators and speech pathologists and audiologists.

[00:43:22] Just anyone out there? I guess I would just say, Oh, I don't know. I feel like I should come up with something really profound here, and I'm not, nothing's really coming to mind, but, um, don't overlook these kids with these mild to severe hearing loss. And that is our big take home message that we do. We can see that these kids can like going back to what our original question was, the way we started off the podcast today, what was the original purpose of this longitudinal study was to see, can these kids keep up with their same age peers and what are the factors that seem to support, um, resilience, kids that are keeping up.

[00:43:58] Versus the kids that are [00:44:00] falling behind and it really seems to get back to, we can, kids can definitely keep up these kids with mild to severe hearing loss they can do as well as their same age peers. Um, But, but it's not, but they can't just do it on their own. Like, we need the support of teachers, which propel, just parents.

[00:44:20] Um, we need to be teaching these kids. Like I said, these self-advocacy skills and, and realizing again, like what you said, the, the device is just a part of them and they're going to need that in order for the classroom to be accessible. That's going to be a part of life, but, uh, but they can succeed. They can meet, they can meet, um, high, high goals, whatever the parents goals have for them.

[00:44:44] And I've definitely seen that with these kids that have been in the study. They've done amazing things. Yeah. No, I'm so thankful for all of the information that you have and all of the resources that. Your group has pulled together and made accessible, on the [00:45:00] websites. Um, and I'm going to post that in the show notes too, and on the Facebook page so that people can click on that and get all of your amazing brochures.

[00:45:09] Oh yeah. I was going to say, make sure you post something about the infographics. Graphics, we do. We love infographic and we spent a lot of time coming up with these infographics and they are available still. We have money, Phonak donated money to us so that we could ship the infographics to whoever wants them.

[00:45:30] And so we still have some of that money left. And so if you just. No to our webpage www.ochlstudy.org, which Carrie will post in the show notes. I will. Um, you can, there's like a little thing you can click. If you want any of the infographics for your office, for your home, share with family to share with family.

[00:45:58] Right. And you can download them as [00:46:00] well. And you can email them. I have them in like six different languages. Now it's funny because I think every time I give a talk, somebody comes up to me afterwards and they're like, I can translate that into Dutch for you or Arabic or. So, so yeah, so we've been translated into multiple languages as well.

[00:46:18] Good. Very much accessible. Yes. Very, yes. Infographics are very accessible. That's good. But I just want to thank you for coming on to the podcast today. I hope our listeners gained a good perspective that mild is not mild not my own and that we really need to look at these kids in a different way so that they can reach their fullest potential.

[00:46:43] And they. They can, it's just a matter of how we approach it and how we support them. And, um, And everything else that kind of goes into that village and that child, that whole child. So, um, again, that bath, I am so thankful [00:47:00] for you coming on today and I really appreciate everything that you had to share and all of the work that you do.

[00:47:07] Thank you. I cannot wait to see you in person at ASHA someday. I know, I know.

[00:47:19] Yes, this has been a production of the 3C digital media network. .

Episode 11: EmpowEAR Audiology - Janet DesGeorges

[00:00:00] Welcome to episode 11 of empowEAR audiology with Dr. Carrie Spangler.

[00:00:15] Welcome to the empowEAR Audiology  podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey. Living with hearing challenges in this vibrant hearing world. I've wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.

[00:00:38] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional, a parent, an individual with hearing loss, or you just want to be inspired. I am glad that you're with us today. I would be grateful if you take a moment to subscribe and give a positive, [00:01:00] positive rating for the podcast, also like us on Facebook at empowEAR Audiology  and engage in a conversation with each episode.

[00:01:09] A transcript of each episode is available on the three C digital media network, web page, in the section of podcast. So today I am excited to introduce our guest. Janet DesGeorges . Janet is a published writer, international speaker and co-founder and executive director of hands and voices a movement, an organization dedicated to supporting families who have children who are deaf and hard of hearing.

[00:01:41] In November, she published her very own book titled Not a leader Now a leader. So today's episode is going to be focused on this book, and I hope that all of you will be empowered to lead. And I am certain that many of you will be getting on [00:02:00] line to secure your own signed copy of this book. So, um, a couple of other things about Janet.

[00:02:07] She lives in Boulder, Colorado with her husband, Joe, and is a mom to three daughters, including Sarah, who is hard of hearing. She has served on the Colorado hands and voices, um, flagship chapter, uh, for over 10 years. And she has coauthored many different articles, um, and co author different. Chapters and books.

[00:02:31] She serves on many different committees,  all over the nation. She is,  presented nationally and internationally. And I am just so excited to have her on our podcast today. So welcome Janet. Thank you Carrie. So exciting to be here. I'm really happy to be here and, um, getting, uh, talking about my book and, um, just kind of life and thank you so much for having me.

[00:02:57] It is a pleasure to have you. So when [00:03:00] I decided to do. A podcast. Um, back in the summer, I had made a list of different people that I had wanted to interview. And you will add that list. And then last month, when I saw your announcement on Facebook that you had published your own book about leadership, I thought it was the perfect.

[00:03:20] Topic, but empowering people on this podcast. So thank you so much. I have my book right here and I have so much information that I want to talk about today, but I always like to start out the podcast with how we know each other. So do you remember when we met. Yes, of course I have. I have several memories of us.

[00:03:45] Um, like a lot of people I know in my world, most of the time I am, I spend with people at conferences. And so I know we originally connected through a mutual friend, Dr. Cheryl Johnson. And it's so fitting [00:04:00] actually that I'm here today to talk about, um, leadership, because Cheryl is a really one of my mentors in my own development of leadership.

[00:04:09] And uh, if I write, if I write a followup book to this first one, I'm going to make sure that I put Cheryl in it because she really has influenced my life a lot in terms of, um, my own leadership. So, yeah, so we met through Cheryl, we've seen each other at. Post-conference happy hour. Good to see you again, or be here with you today.

[00:04:34] Good. I know. And I have to say too, Cheryl has been one of my leadership mentors as well, along the way. So, um, it's amazing how we have that same similar person who has influenced us in two different ways. Really so exciting. So a book, like what. Incredible personal and professional accomplishment. So can you just share with our listeners, what was the motivation [00:05:00] behind writing this?

[00:05:02] Well, I like to talk and writing is an extension of having the floor, I think. And, um, I. I think as my, as I, my own career or life in and hands and voices, and as a parent of a daughter, who's hard of hearing it, all. It all began to emerge and kind of grow bait grew based on our family story of raising a daughter.

[00:05:32] Who's who's that hard of hearing. And so. Over the years as my role evolved. And I became involved in more leadership positions. Um, I realized there was kind of a correlation between the life, the journey that I'd had in raising a daughter whose deaf and my evolution of leadership. And I think I, over the years, I've spent a lot of time talking about that journey of family, of [00:06:00] raising a child.

[00:06:00] And so my interests. Um, in sharing this book was really being able to self reflect and talk a little bit about, about leadership. And, you know, one of the first quotes I ever heard about leadership that I just this day have like posted in my room is from, uh, Terry Pierce. And he says there are many people who think that they want to be Matadors.

[00:06:23] Only to find themselves in the ring with 2000 pounds of bull bearing down on them. And then they discover that what they really wanted was to wear tight pants and hear the crowd roar. And so I think about all of the skills that I needed to do the job that I have. That, that I needed to grow my skills in and I learned through kind of hit and miss making mistakes.

[00:06:48] And so, yeah, I was just motivated to talk about that part of my life. Yeah. And I have to say like this book I think is, is a perfect book for, [00:07:00] um, parents and professionals. And I think I told you earlier that. This would be a great book study, I think would be awesome. we are all So busy, and to be able to have some tool to self reflect on ourselves is, is powerful.

[00:07:16] And so I kind of, when I was going through the book, um, picked out some of my favorite chapters of the book that I wanted to get more information and feedback from you. And I think the first chapter is. Titled the journey starts here. And so do you want to give our listeners just, I mean, I know you kind of talked a little bit about how your leadership journey started, but do you want to kind of dig a little deeper into that and how you feel like you went from not a leader to now a leader?

[00:07:48] Yeah. Um, Sharon, I, I just wanted to add a couple other comments about writing this book. Um, One of the moments where I really decided to write it. I was actually sitting [00:08:00] in a room with Marion Downs, who is, I'm sure most of your listeners who have been in the audiology world, know her as a pioneer of newborn hearing screening.

[00:08:09] Um, she lived to be almost a hundred years old and in her nineties she wrote a book called “shut up and live”. And she always struck me as someone who a, you know, like I would think, man, all the other people I know that have. You know, live to this long, you know, have had ailments and, you know, I had to overcome so many challenges.

[00:08:32] Marion, must've just been one of those lucky ones. And in her book, she talks about how she actually had to face all those challenges. And I realized. Kind of from the outside, looking at it, there was so much, I didn't know about her life. And so for me, this book about leadership, um, I mean, one of the gifts that has been given to me and my life is that I'm now surrounded by many leaders who are emerging.

[00:08:58] And that's part of [00:09:00] my role I see now is helping other leaders kind of move up. And, um, so I, I just remember thinking when I read Marion's book and I even talked to her about it and she's like, Janet, you need to write a book. So that was kind of like, all right, I'm going to do what Marion says, um, write the book.

[00:09:17] But that was the other motivation is thinking about my own journey into leadership and could it help others? And, and so for me, how I grew in leadership was, was never very, um, Uh, planned out. It just kind of happened over time. I did not go to college and get a degree and in leadership development or public health leadership or anything like that, I just found that our own life and our own life story with our daughter began to put me in positions and opportunities, um, to be a person of influence and, um, And so the skills that I [00:10:00] needed to do that, um, I, I grew over time and as I was reflecting on this book, I kept thinking back to the professionals in our family's life when we first started.

[00:10:11] So, you know, like the moment, the audiologists that we first worked first worked with the early intervention provider that I mentioned in the book who treated me like someone who knew what they were doing. And I did not know what I was doing, but that kind of affirmation and, and, um, Uh, confidence that she gave me in my own journey really led to some of the strands of then leadership development over, over time.

[00:10:41] So, um, I, in the end of the book, I talk about just like practical, practical applications of leadership development for people who are listening today, that one to create space in their life and get more opportunity to have. Um, their [00:11:00] story influence and, um, you know, one of the things I say is just like, raise your hand and say yes.

[00:11:05] So, so honestly, a lot of where I got from starting to till now is being willing to just kind of put myself out there and say, yeah, all. You know, I'll do that. I'll write an article on, on my family story and I had never really written much before or whatever. So just, just being willing to raise your hand and say yes, I think, I think your willingness to share from where the journey starts is so important for whether you're.

[00:11:35] A parent finding out for the first time that your child has a hearing loss or you're a professional who is just starting out. And like you said, asked to write an article or do a presentation. Everybody has to start somewhere, right? Yeah. And, um, I think, I think we, I think professionals talk a lot about empowering parents.

[00:12:00] [00:12:00] Um, to be good parents for their own children, but I think the next level of that is, is as an empowered parent. For my own daughter, it gave me kind of the courage and confidence then to begin to share with other parents or to do parents to parents support. And then, and then ultimately being in rooms with, with people that I, I w initially, I think at times was intimidated by, but over time I had that confidence of being an empowered.

[00:12:31] I know. I know some things, I know some things that are true about raising a child and stuff. And so that gave me the confidence then to, to be in rooms at times where I could be an influencer. For instance in kind of systems change or systems development. Right. And I think that kind of leads me a great segway into another chapter that you have titled what gives you the Right?

[00:12:56] So I, I think the human nature of [00:13:00] us sometimes gets the best of us and we doubt. Who we are, especially if we don't have a title in front of our name or, you know, you, your offices and on the 12th floor of a building overlooking the city or whatever it happens to be, but you talk a lot about finding your voice.

[00:13:19] So what kind of advice do you give parents or listeners about finding their voice and having that right. To be a leader. Yeah. Um, I think for me in particular, I found myself in circles that, um, that, uh, a lot of other people, um, looked at their own influence based on their, um, academic degrees. And so, because I was a high school graduate.

[00:13:49] Um, being in those circles, I'll just give you a couple examples. As I began to speak and attend different conferences, sometimes I would be honestly with all [00:14:00] PhD presenters. And so I know one time the, um, the conference put a Dr in front of my name. And so, you know, of course I immediately sent that to my mother.

[00:14:10] I'm like, Hey mom, you've got to call the Dr now, but I emailed them. And I said, I'm not a Dr. And they would not change it. It was like, For some reason, their perception of my value must have an academic. Academic title next to it. And then another time I, I spoke and I came off the stage and two people came up and asked me where I had done my graduate studies.

[00:14:34] And I said, I don't have a college degree. And literally they wouldn't believe me. They were like, Oh no, that just can't be true. You know, tell us. And so for me, that's been an interesting experience, um, to, to, um, not just, not just have the confidence to be in that, but to understand that. And for those listening today, to understand, particularly for us as parents, the, our [00:15:00] voice in terms.

[00:15:01] Of of what our role is in, in the systems that serve us as parents, that our expertise is just as valid, whether we have that expertise from a college degree or from life experience. And so I think for me, that's because I, I was really blessed and able to kind of move in circles where often I was the only, literally the only person in a room that did not have.

[00:15:28] A college degree. I just had to learn over time that, that, that did not equate to my value of being able to give input. And so, um, I think I've, and in fact, You know, for parents who go to advocacy or, you know, like parent advocacy courses, they always say like, don't ever just say, you're just the mom. And I talk about this a little bit in the book and, and, um, you know, and sometimes I would, I would say that and people would correct me and I, I know what they were trying to do.

[00:15:57] They were trying to. [00:16:00] Say that you have validity, besides that being a mom gives you validity. So I liked that, but I actually now over the years, people will say, you know, you should just go ahead and get your degree, you know, get a college degree. And I'm like that I would totally lose my street credit with all the other parents.

[00:16:18] Just a mom is a badge of honor. Now I liked that. So I just. I just stay in that sweet spot. And I think for people who, who are trying to find their voice to say whatever it is, whatever life experience has given you, that is your street badge, you know, and if you can begin to articulate and think about how, what you know to be true can help other people.

[00:16:43] Um, then that's where you, I think you begin to be able to have a voice and speak into other people's lives. Yeah, I think parents are so empowered to hear stories like yours when you, you're not just a mom. I mean, you are just a mom, but you're [00:17:00] not just a mom. You're you are Sarah’s as mom who is, has a huge voice for her.

[00:17:06] No matter. You know, what meeting you happen to be at and what titles you happen to be around. So it's, I think important for parents to realize that they are a important part of that whole process and they can be part of that system change too. Right? Yeah. Um, I wanna, I wanted to add one more thing in terms of being able to.

[00:17:29] Find your voice, but, but so that it has purpose. Like I remember once, um, speaking at a conference and I, all I was asked was to share our family story of identification and early intervention, and they introduced me and. And I spoke and I came down off the station. That's mom came up to me crying. And she said, when they introduced you and said, you were going to tell the parents' story, I just rolled my eyes and said, come [00:18:00] on, bring it on like theirs.

[00:18:02] And she said, everything you said, I felt too. And that, that, that, and so I think being able to, so that's what I'm trying to do about leadership, which is. I know there are a lot of people out there in roles and positions that are going to require some leadership than you. You have got to be able to, um, to grow your skills so that you can be an effective leader.

[00:18:30] And so for me, that's what I've been trying to do in this book, as well as. I think it's a good book. Isn't me telling you things you don't know, you don't know. I have a feeling Carrie all your places in the book where things that you already know, but probably resonated with you to some degree and maybe affirmed and maybe gave voice to, Oh, I felt that before, but I've never really been able to say it.

[00:18:54] So for me, that's what some of my goals and talking about leadership with others is, is [00:19:00] you, you know, some of the things that you need to do. Um, in terms of leading, but I'm, I'm hopeful that some of the things in this book just give words to that. And I think they do. And that's why I do have a lot of that marked because they did resonate a lot with me and I could see parents.

[00:19:19] You know, a small group of parents getting together and reading a chapter and reflecting on that and sharing those stories together, or professionals too reading that and, and being able to reflect on that as well. One of the reactions for the journey starts here is when I read your chapter, I felt that my mom probably had the same feeling that you did.

[00:19:45] About like, why me? Why is this happening to me? And I think in the chapter, you had mentioned that Sarah, um, really, it didn't phase it, right? This was just part of every day. This wasn't, you know, it, it really didn't [00:20:00] impact her the same way it impacted. Mom. And I know that when I wasn't diagnosed till I was four, and I remember getting my hearing aids and I thought it was exciting because I'm the center of attention and you know, this is all about me, but.

[00:20:17] Talking to my mom, this was a very hard thing for them. So it just kind of that perception. But knowing that they were, she had to be the leader in my life, um, in order for me to grow up and have confidence in myself. So that, that was what kind of stirred emotion in that chapter about the journey starts here.

[00:20:38] But you talk a lot. I think that's a good segway into connecting with others. And you talk about being vulnerable. And telling your story and then how that helped you, um, as a leader to connect with others, um, and get other people to maybe jump on more kind of a system change, but jump on the bus with [00:21:00] you per se, and those who might.

[00:21:03] Not have been on your bus. Um, how do you kind of get them to at least come closer to that door of the bus? Um, can you talk a little bit about the importance of connecting with others, maybe from I'm already on your bus too? I'm not on your bus, but how do I kind of work with you? Sure. I it's funny.

[00:21:24] Cause I, I think over the years where I had the opportunity to start telling our story, Um, was in professional circles. So, um, so this question and thinking about connecting with others, um, for me, it's about how do I get someone else to listen to my experience in an open way and not in a defensive way?

[00:21:47] So I'll tell you. Um, I remember sitting in a meeting full of physicians and they were touting medical home and they were talking about the five areas of medical home and [00:22:00] accessible and all this. And I just remember what was bubbling up inside of me was my story of me going to our pediatrician over and over again and telling him we didn't think there was something going on with Sarah and he wasn't listening to me.

[00:22:16] And, um, can you imagine, like if I, so I, I. Aye. So that's an example of, I have to be able to take my story in a way that others can hear it. And so it's not just like the sandwich approach, which is like compliment someone and tell them what they did really badly. You have to be able to let them experience the moment with you rather than from their point of view.

[00:22:44] But if I'm not acknowledging their moments. So like, if I'm saying the doctor had his hand on the door and right when I was getting to the most important thing I needed to say to him, he was getting ready to leave. If I, if I, in a [00:23:00] conversation with physicians, don't acknowledge their world and what their life looks like, there's no way that they're going to be able to hear me to say the most important moment in my, in my meeting with a doctor is at the end.

[00:23:14] When I finally get up the nerve to ask a question, Um, I need to know that they're present. And so I think for me, that chapter resonated with me about being able to share, learn and hone my skill of storytelling because, you know, I think you'll the book is, uh, most of the times I just tell a quick little story and then make my point and then I'm off.

[00:23:37] So, for me being able to influence others so that they're on the bus of like, Parents centeredness is a lot of work that we're doing at Hands and Voices, which is we want the system to work from our point of view. We have to then let those who are, have power and control in this system. Be motivated to make sure it works from our point of [00:24:00] view.

[00:24:00] And I believe that's by really being able to connect. Connect with others, you know where they're at. So, um, I think storytelling is, is a big, a big part of that. And I did a presentation once for audiologists. I'll just, I'll be good, the bad and the ugly. And, you know, I think just however, we're all, we're all made in different ways.

[00:24:20] For me, connecting with people is. Is, and I think you're like this Carrie too. Like if you're, if you like being with people, like I really enjoyed people. And so I always like to feel like whether I'm on a stage or just one-on-one, that I can just find something in common with someone and then speak the hard things sometimes that people need to hear.

[00:24:39] So I think that's what that. Chapters did about that. And I think the storytelling is so important and I know you do it so well too with sharing. Like this is my story. This is my journey. It might be different than yours, but. Let me share what I've learned [00:25:00] and hopefully someone else will benefit from it.

[00:25:03] Or they'll be able to add another perspective that you haven't thought about too, which I think is, is important. And I'm always willing to share my story too, with families or professionals. And I have learned over the years to really state like this is my journey. These were The choices that my family made for me and this, and whatever choice you make for your child is, is the right choice for your family.

[00:25:32] But I think the art of storytelling is so important just to find that common ground, um, and be able to embrace that too. So one of the other, um, topics that I think is hard and you're talk about. Overcoming adversity too. And you. Kind of in this chapter, you share with the readers and I'm going to quote you here that embrace adversity It will make [00:26:00] you stronger. It may be the very thing that leaves you to a life of leadership. So I think, wow, that just resonated with me in my own life. But I know I would love for you to share more about how your own thought of adversity really. Put you into Not a leader Now a leader. Um, I'm glad you quoted me or it might've denied that.

[00:26:27] I said embrace diversity. It is so hard. In fact, I remember when I was writing that, that particular chapter, I was going through some really internal struggles and I think. Um, around my own leadership. So, so whether in thinking about your leadership, whether you're, um, like for me as an executive director and managing and running an or larger organization with all the pressures and, and, um, and my relationships with our board of directors and our staff, when, when I, when I think about [00:27:00] embracing adversity or overcoming adversity, what it, what it really means to me is having the courage.

[00:27:09] To do the thing that I know needs to be done for the organization. And the courage that I need is to get past, um, the, the difficulty in facing that. And so for me, Um, one of my personality, strengths or flaws, I like to be liked by other people. And so I, when I have to make a hard decision as an executive director, I cannot make that decision based on whether people are going to like that decision or not.

[00:27:45] I mean, I can do all the things in the world around me to make sure that I have. Buy in that people are part of the decision, the conversation, but, but when you are in leadership, what that means at times is you have to make decisions that are [00:28:00] tough. And so for me, embracing adversity is I knew that that the situation I was in was in a situation I had never been in before.

[00:28:10] And I had to have the courage to do the right thing. And so, and, and, um, if you don't. Your organization is going to fail or that the, the thing you're trying to influence or change is that if you get distracted by, um, by being sidetracked by how it's affecting you personally. So for me, embracing adversity is really hard.

[00:28:31] I do I talk about it or write about it, but it is, I think it's hard for all of us. Right. But I'll tell you the satisfaction of doing, doing that right. Thing is, especially when you know, The thing that you love and have a passion for is going to be healthier. So in my case, our organization, then, um, then I think, um, it's where you learn.

[00:28:57] I, when I've had to face [00:29:00] adversity, it's typically in places I haven't had to face it, you know, things I've had to do before that I haven't had to do prior to that and, and learning and growing in that, um, Yeah, it will read, it will read benefits and then it gives you confidence really for the next time you face adversity, like I can do this.

[00:29:17] Like I had to face this last year. I can, you know, I can do this next thing, which also kind of takes you into that chapter of how to not take a selfie. And I love that title too, but as leaders, like making sure that you're staying focused on what matters and, and. What you just talked about facing adversity and making a difficult decision or a courageous decision, because it's the best for the organization or for whatever your mission or purpose happened to be as, as a leader or an organization.

[00:29:55] But how did you instill that type of, [00:30:00] I guess, um, competence or trust and. The organization and the people that you work with or work for, or who worked for you. Um, so for those of you who haven't read the book yet? I, in fact, I, for a while, I, it took me a while to publish his books. I kept changing the title of the book and I actually wanted it to name it, how to not.

[00:30:27] How to not take a selfie and other life lessons and leadership. Um, so I think one of, you know, I, I know that I have a gift for storytelling. I also like to move through my life and think about what's going on. And sometimes I'll have like, Oh, that makes me think about this. So in that particular case, I was out.

[00:30:51] One day, I was going to take a picture of these beautiful lit trees. And, um, I was up in the mountains and, and I just thought, Oh, I'll take a [00:31:00] selfie. And I don't really like doing selfies, but so I put myself in front of the camera and the tree, the beautiful trees were behind me. And, uh, and then right at the last second of my friend always said like, do you want to look thinner and younger?

[00:31:14] And shouldn't have cameras held up high. So in the book, there's a picture of this terrible picture with me and my thumb and you can't even see the trees. And, and, um, I just remember thinking about that experience and how in leadership, how easy it is for us. To get distracted from what, what is the important thing?

[00:31:37] And, and this is another thing I learned in my life journey of raising a deaf daughter in the area of education, which was we at hands and voices. We train parents to be strong advocates for their kids and education. You know, we often say, Do you drop your child off at school in kindergarten and expect to pick them up as, you know, graduate in high [00:32:00] school, having a strong academic success without your involvement, you need to learn advocacy because we just said you have to do that, but.

[00:32:09] But ultimately I learned over time as I became a really strong advocate for Sarah at that, even if that wasn't the goal, the goal was for her to be a strong self advocate for herself. And that's something that I learned, that it was not about me. And so when I. I take that lesson that I learned in advocacy.

[00:32:32] And also as an educational advocate, I've attended, I think about 70 IEP meetings with families. And I learned in those rooms too, that it wasn't about me winning the moment against a special ed director who did not want to provide access to a deaf child. It was, um, it was about ensuring that that child got the services they needed.

[00:32:55] And so in leadership, we have to be able to make sure that we stay [00:33:00] focused on what we're trying to achieve. And part of that. Is letting go of the need to be, to get the credit for what, what you're, you're trying to accomplish. And just let to know that what you're trying to do isn't in the end, trying to be a leader, you're trying to accomplish something that's strong leadership skills will get you there.

[00:33:24] So. So, yeah, that's that, um, that little story of the selfie and maybe, maybe my next book, all title outside on that. But I told someone that I was going to name for that and they're like, people might be confused. It's a photography book. So I decided not to do with that. And when I did finally named the book, I, Oh my gosh.

[00:33:46] Like I said, I had gone through a few titles and. I remember sitting here just going, Janet, what is the point of all of this? Like I  and I remember thinking, well, I wasn't a leader, and then I became a leader and that's how it kind of, I am Not a [00:34:00] leader. Now, a leader kind of, kind of came to me because I do believe that leadership, you have to, you have to desire it.

[00:34:09] You have to build your skills. You have to read good books. You have to do more than just life experience. You really have to apply. Um, yourself to it, and you have to surround yourself with other leaders that you admire descending, you will learn. And we talked about Cheryl in the beginning of this. I just remember seeing her in moments, um, in committees of.

[00:34:33] That, where there was, um, you know, kind of a lot of conflict going on on how well she managed that. And I just remember learning from those experiences. So yeah, I think all of those, and I think your point about the selfie and being distracted, sometimes there's, I've had a book in and I think it was called the best.

[00:34:54] Yes. But there are some things that we have to. What is your best Yes?. At the [00:35:00] moment, so that we're not getting distracted by other things that happened to be going on too. So I think that's that important. We get distracted sometimes. So we just kind of do go on every day with everything that's going on and was so busy that we lose track of what is out of focus and.

[00:35:18] What I'm doing right now, is it moving the organization or my leadership or whatever forward. And I, I have to think about that sometimes. And when I, what I say yes to, because we could say yes to a lot of things, right? You talked about that earlier. Um, and sometimes at the beginning, it's important to say yes to a lot of things,

[00:35:41] Wow That's a really good point. I don't think it was in my book. I'm going to put it in my next book, which I really like, it's not. Just about, um, getting distracted with your own self, but distracted with the other things that might be good, but not best, especially in terms of our Workday. [00:36:00] You know, I'm sure like, like a lot of us in our organization, we really struggle with saying no.

[00:36:06] Anytime anybody requests, anything of us, both personally and organizationally. And you're right. If you don't keep focused on what you're trying to accomplish by keeping the most important activities on your plate. Um, then you can get distracted. That's a really good point like that. Yes. So just, I wanted to end with, um, the ripple effect.

[00:36:31] I loved that as well. And you talk a lot about. Anna, um, and your daughter, Sarah, and the whole mentorship, but can you just share that story? Because I think it really comes full circle of what a leader is and how you have developed a leader in your daughter, just by who she is. I I'm happy to. And I also have one more, that's more on a personal level.

[00:36:59] I'll share too. [00:37:00] And I apologize for any listeners today who have heard me speak at conferences. I have told the story of the Anna a lot at the end of the presentations, because it does represent for me kind of what we were talking about earlier, too, that in terms of like my own life journey with Sarah was.

[00:37:19] Of course it's about me and, and our whole family together. But in the end it is really about her. And so this story is about Sarah. When she was in high school, her, I love it because it's her, one of her deaf ed teachers that knew her from, from a very young age and, and was there to support her through her whole school years.

[00:37:41] And then ask Sarah, would she be willing to mentor, uh, another little girl in our school district who was, I think about eight or nine years old. So they set it up and Sarah went over once a week to the class and she volunteered in the class and she. Met with Anna. And she would come home [00:38:00] after those days and I'd always say, how'd it go?

[00:38:02] And she's like, I don't know. I don't, I don't really seem to be making a difference. She's just kind of blahzay about it. And then one day she literally came like bursting through the doors at home. And um, she said, mommy, mommy wouldn't believe what happened today. And she'd tell the story that she walked into the classroom.

[00:38:18] And she looked around and she looked over at the teacher and said, where's Anna. And the teacher looked at her really strangely and said, well, she's over there at her desk. And Sarah looked over and Sarah said she had, she hadn't even noticed her because every time she'd been into that class, Um, for the weeks or months up to Anna always kept her hoodie up and she was embarrassed of her hearing aids.

[00:38:43] And that, um, that day Anna was sitting at her desk. She had her hoodie down, she had her hearing aids showing and she just had this huge smile looking straight at Sarah. And, um, I, and Sarah was just so [00:39:00] excited that she  Sarah had said that she just kept every week. She would just go in and talk to Anna and tell her it's okay.

[00:39:06] You can be proud of who you are and your hearing aids. And it just meant so much to her that, um, that Anna finally received it, you know? And, and where did Sarah get that from? That, that feeling of confidence as a hard of hearing person and showing her technology? Well, it probably got that from me as her mom.

[00:39:27] And where did I get that from? I get that from deaf and hard of hearing role models in our life and the professionals that helped us understand, you know, the empowerment of that. So that's kind of the ripple effect of the work that we do. We do, whether you, as a leader are going to, um, end social injustice and racism in our world, which I, I believe there might be a listener today who has been called to do that.

[00:39:54] Um, or whether your impact, your ripple effect as a parent in what you [00:40:00] are giving to your kids day in day and day out, know that you're going to have a ripple effect in not only in their lives, but then who they will come. Become in their lives. So yeah, that's, that's my story of Anna. I love that story because it, I think I listeners and parents and professionals need to realize we all need to realize that it doesn't happen overnight.

[00:40:28] Right. So Sarah was in high school and she had this ripple back, but look at all of the steps. Little ripples along the way that you played. And the other people played in her life in order to get her to the point where she felt confident about sharing with someone else and making a difference. It came full circle, which is so fun.

[00:40:55] And the joy that we get from being a leader or. [00:41:00] Doing what we're passionate or purposed to do.  I would encourage your listeners, to think about the own, their own stories in their life or encounters or moments that they're having with their own kids or professionals across from the parent. And, um, and in moments that we recall or remember that are really profound for us to say, can the sharing of this story impact impact others?

[00:41:25] Cause I, yeah, cause I think the ripple effect. Was not just between me and Sarah or Sarah and Anna, but now being able to tell that story and others understanding the power of that. So, and so what is, does Sarah do any of these wonderful leadership passion that you have as hands and voices, executive director that she has?

[00:41:48] Has your ripple turned into her ripple at all? Um, Sarah, you know, it's funny now that she's an adult, um, you know, in the old days I, I would pick her up from [00:42:00] school and she'd be telling me something happened at your mom. This is going to end up in one of your presentations, isn't it. And so now as an adult, I'd love per se.

[00:42:10] I would love for Sarah to be able to answer that question. And in fact, on our, on our hands and voices website, we have interviews of deaf, hard of hearing adults. So Sarah actually talks in her own voice about. About that journey, but I will say this. Yes. I, I can see, um, in, in terms of her deafness and who she is as a deaf person, I love who she has become.

[00:42:37] Um, she is now my teacher and she also is the one to self identity  who she is and in this life's journey. And I think the thing to answer your question, she has. Such strong confidence in who she is. She has a lot of, she has taken a lot of courage and, [00:43:00] um, to do her, the thing that she loves. Um, right now, she went to college and got a degree and worked in an area for a couple years.

[00:43:09] And then I remember she called us the mom. Remember, I always told you I wanted to be a hairstylist. I'm moving back from Seattle to Boulder and going to cosmetology school. And today she works in a very high-end beauty salon. Um, and she's doing great. She loves it. She has a passion for it. And. You know, I often she even talks about that particular setting.

[00:43:32] I mean, you can imagine the background noise and the lip reading and, you know, what's even going on now with the ability to lip read and different things. So, um, yeah, from my point of view, she's living a life of, um, of confidence in kind of, um, you know, uh, seeking after her passion. So. That's awesome. Yeah.

[00:43:56] I wanted to share one more story. [00:44:00] I would love to hear one more story. This isn't really about my book. Um, but this is just about our own family, um, that when we talk about coming full circle or the ripple effect of raising a daughter, who's, who's deaf. We were standing in the kitchen. Um, our family and Sarah was there and our middle daughter, Danielle, who was about nine months pregnant.

[00:44:26] And we were chatting about, um, her, um, delivery experience, um, at the hospital. And you know, about when we would get to the hospital or not. And, and, um, I said, look, If we miss the birth, don't worry about it, but just make sure you don't go do the newborn hearing screening till we're all there. Just joking.

[00:44:50] And we're laughing and Sarah here's Danielle, you know, totally. And about us bursting at the scenes and [00:45:00] she looks over at Sarah and she said, wouldn't it be great if I had a deaf baby? And for me, that encompasses is the full circle in our family of the joy. Of this journey. And I think, um, for, for professionals who are working with families, for families who are experiencing this journey of the full circle of, um, I know in your podcast, your, and your first podcast that you did,  think everyone should listen to, they haven't been talking about purpose, kind of what is the purpose of all of this?

[00:45:38] And so. You know, for me, even my book or the, or the leadership journey is, is a side trail to what we're all trying to do here in this particular field, which is to raise independent, strong, successful, and fulfilled deaf adults with a holistic sense of this [00:46:00] and sort of the joy, you know? And so I've, I still love that, that moment to this day, when, when being deaf in our family was.

[00:46:09] Viewed and seen as a positive thing. Yeah. And I think it does come full circle, but it takes, I think, appreciating adversity and being able to come to terms with that. And for me, I think. What people view I used to be as my greatest adversity, became my goal strength and became my purpose. But it was because of the support I had and the connection that I had with other people who have helped me along the way that got me to a point where I could feel courageous, vulnerable about storytelling and sharing my story and actually.

[00:46:56] Having that ripple effect with other people in a positive way. [00:47:00] Yeah. That's good. Maybe that'll be the name of my next book, the ripple effect. But my third book is going to be let go and it's time to leave.

[00:47:13] Yeah. I, at some point leadership is developing others around you so that they're leading in the next generation. That's what I love right now in my work is that I'm, I am surrounded by parents. In my particular case, the parent leaders who are, have a passion to ensure that families have the resources, support and information they need so that their kids can be successful.

[00:47:40] And that's what really gets me going these days is, um, you know, passing, passing that torch, um, the leadership lesson, I’ve learned stuff. And this has been an amazing conversation. I think we could probably go on forever, but I think our listeners are probably [00:48:00] thinking, where can I get this book? And I want to have a book club, a book study and think about, and reflect about my own leadership and where I can have a ripple effect.

[00:48:10] So where can people find your book? Thank you, Carrie. You can go to www.janetdesgeorges.com. It's just my first and last name. It is not available right now on, um, on, uh, Amazon or anything. You just order it directly through my website. And I have been thinking lately of putting, uh, um, a book club guide on the website.

[00:48:35] So Carrie, you asked me such good questions today. So if I can steal some of your questions, all put together a little guide and put that up on the web, the website. I do think it's a great. A great conversation book. So yeah, I hope if you're listening, you'll order it and enjoy it, share it with others. Um, yeah.

[00:48:55] And let me know how. I like it. I loved it. [00:49:00] I genuinely loved it. I read it in a few days, and like I said, I have post-it notes all over it. And I think I will, um, wrap my two colleagues into doing a book study with me. I think they would enjoy it very much, but Janet, I want to thank you so much for taking the time and coming on to the podcast today and, , sharing the book and sharing your story as well.

[00:49:28] Um, so thanks for joining us. Yeah, thanks for having me Carrie and yeah. Continue. Good luck with your continued work. Um, and these podcasts. They're awesome. So thank you listeners for listening today and please like us on Facebook and, um, share with anybody else that might want to listen. Have a great night.

[00:49:54] This has been a production of the three C digital [00:50:00] media network. .

 

Episode 12: EmpowEAR Audiology - Dr. Erin Schafer

Ep 12_EmpowEAR_AuD_Erin Schafer_FINAL

Welcome to episode 12 of empower ear audiology with Dr. Carrie Spangler.

[00:00:15] Hi, everyone. Welcome to the empowEAR audiology podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiogist with a lifelong journey of living with hearing challenges and there's the vibrant hearing world. Thank you for listening, and I hope you will subscribe and buy others to listen and leave a positive review.

[00:00:38] I also want to invite all of you to visit a Facebook page and engage on the empowerEAR audiology page. Let's get started with today's episode of empowerEAR audiology. I'm really excited to have my friend and colleague Dr. Erin Schafer. Join me for a conversation about hearing a system technology.

[00:01:01] Sometimes we call it FM or DM systems. This is such an important topic to dig deeper into. As we discussed children and adults with hearing challenges, we live in a world that is dynamic and speech and sounds. Hearing aids, bone conduction devices and cochlear implants have come a long way and how they process this dynamic world.

[00:01:24] But there are times when more is needed. So before we dig deeper, I'm going to share a little bit about my guest, Dr. Erin Schafer. So Dr. Schafer, she joined the audiology and speech language pathology faculty at the university of Northern Texas in 2005, and is currently a professor and the director of graduate studies and audiology.

[00:01:49] She received her PhD in communication, sciences and disorders from the university of Texas in Dallas and her research programs and the assessment and rehab of adults and children with hearing loss and auditory disorders have produced over 60 peer reviewed publications, 4 textbooks, national and international podium presentations at conferences and external grants.

[00:02:15] Her current research project focuses on the use of remote microphone technology, and editorial training to improve auditory function and the individuals with hearing AIDS, cochlear implants. Also those who are diagnosed with an autism spectrum disorder. And 2016, should we see the grant from the Texas higher education coordinating board to fund her work with children and young adults with autism spectrum disorder.

[00:02:43] She's the editor Audiology today, the past president and journal editor, editor of the educational audiology association and a board member for the auditory implant initiative. So Dr. Schafer was, uh, one of the 2017 U N T office of research and innovative teaching scholar avoid and the 2013 Cheryl DeConde Johnson award for outstanding achievement in educational and pediatric audiology

[00:03:14] So Dr. Schafer, welcome to the podcast. And thanks for being here. Thanks for having me Carrie. I'm really excited to talk to you today. Yes, I am excited to have you here today. So I was trying to remember how we first met. We met at an educational audiology conference many years ago. In, um, I think he was in Arizona.

[00:03:41] We might've been having a drink and it was very, very hot. I think you might be right. And then we've had the pleasure of before COVID to meet at many other different conferences and travel different places together. Yes. It's been great fun. Yeah, it has been. So hopefully at some point we'll be able to, to do that again so we can network in person.

[00:04:04] Right. I am really looking forward to that. I cannot wait to go to a professional conference again. Yes. So I was also wondering, cause I like to ask the people I interview, how did you get started in the field of audiology? Well, it all started way back in eighth grade and there was this really cute boy and he had hearing loss and he actually did not use spoken language.

[00:04:35] He used sign language. And so I thought to myself, I think I'm going to learn sign language so I can talk to this cute boy. And so I did, and we ended up dating quote, unquote, dating as you do in eighth grade. And, um, what I learned is this, the struggles that he had, uh, communicating with others, and many times I would communicate, um, on his behalf.

[00:05:02] And I came to learn that he really did not benefit from hearing aids because his hearing loss was so severe. And at that point I decided I wanted to be a deaf education teacher. So my undergraduate degree actually is in Deaf education. But during my studies, I realized how much I loved the technology.

[00:05:23] So I had a, this was many moons ago, but I had a little girl with a cochlear implant and I had several kids with hearing aids as well. Um, when I first started out in deaf education, And, um, I really only was in the classroom for less than a year. Uh, when I decided I wanted to go back to school and study audiology because the technology is that we have to work with is amazing.

[00:05:49] And seeing this little girl with her implant grow, um, she was in preschool grow from limited language to being able to say a few words was really, um, cool, amazing and heartwarming. And I just knew, and I love the technology aspect, learning about. Um, the ins and outs of the technology. So that was kind of a long story, but that's how I got here.

[00:06:10] And, um, during my graduate studies, I worked with Linda Thibodeau at UT Dallas, and she also has a love for technology and helping kids and adults, adults too. And so, um, she showed me the world of research and how that can. Um, really opened the doors for many people all over when you publish findings of how different technologies can help people.

[00:06:38] Wow. That's, that's a great, I don't think I knew that about you, um, with the deaf ed experience, but what a valuable experience to bring to the field of audiology. Because we know that kids, um, don't spend their time in the booth and they spend a lot of time at school. So for you to have that one year of experience of working in the schools and then bring it to the clinic and research setting, I'm sure is powerful.

[00:07:06] Yes. It's been really, really helpful. And also to understand that these kids, um, their worlds are big and they're served by all these other people. Um, in the schools and then they're also have the context of their families. And so it really they're little people, you know, they have these whole lives and you have to kind of look at the whole picture to really determine their, you know, the needs that they have.

[00:07:33] Right. So you talked about going back and finding your way into audiology and then into the world of research. So what has been the area of research that you enjoy the most or get excited about? Probably, um, two areas. Really the first one would be cochlear implants. Because, you know, people with severe to profound hearing loss, or either even moderate to severe often find at some point hearing aids just aren't enough speech, especially in challenging listening situations, which I'm sure happened to you, you over time.

[00:08:12] Right. And yeah. And, um, the cochlear implants take work and they take time to adjust, but they are such a dramatic impact. And again, I just think that's amazing technology. And when you can really connect with people and help them to grow with their technology, that is an amazing thing to be a part of.

[00:08:35] And the second area that I really love, um, and it dates back to my educational experiences is remote microphone technology, where the primary talker where's the microphone. And the listener either listens through loudspeakers or even better, whereas something on their ear that, um, is a standalone device or can connect to a cochlear implant or hearing aid.

[00:09:00] And the true benefit of that is that it takes that primary speech signal directly to their ears. Which alleviates all the problems with listening and noise, listening from a far distance and even reverberation in an environment or echoes in an environment. So that too has a very dramatic effect on listening.

[00:09:21] So I think I like dramatic effects on listening, I guess, because, you know, for example, people with hearing aids and cochlear implants, if I have them repeat back sentences to me, Maybe they'll score about 60% wear their hearing aids or cochlear implants alone, but can score up to like 90, a hundred percent when they're using this remote microphone technology, because it really does place that signal right in their ears.

[00:09:48] And of course that's after some use of the hearing aids and implants, but it again, is it dramatically improves performance. It's not perfect of course, because. It helps with one talker and in the real world, of course, there's many times where we're listening to multiple talkers. So it's not a perfect technology, but it certainly does help kind of in, in direct instruction for one-on-one conversations in a noisy restaurant or something like that.

[00:10:20] which I think brings me to a point. From an educational audiologist perspective and working in the schools and trying to advocate for the need of remote technology, a DM or FM system. And. Of course, we need that research that you do, because that is going to give us something to advocate on behalf of the school buying the equipment.

[00:10:51] But another thing that I typically hear from teachers. Is, you know, I talk loud enough. I don't need to wear that microphone, you know, so, and so the student hears me just fine and he's following all of the directions in the classroom. I really don't need to use that. So what can you tell us? So what is your reaction when you hear someone say, I talk loud enough or I don't need to use that microphone.

[00:11:22] I think most of the time. Most teachers don't have ill intentions towards their students. And they honestly believe that when they say it out loud. And so the main thing for me to do is to try and I worked as an educational audiologist for several years and my district was pretty strict about me.

[00:11:42] Having evidence of these kids having trouble, because of course this technology does cost money. So I think trying to look at the kid as a whole, like I mentioned, as a whole piece is really important to not only help the teachers better understand, but also the administrators who, um, hold the purse strings or control the purse strings.

[00:12:06] Um, so I think really taking a look at the environment in which the child is Asked to learn the multiple environments. In some cases, certainly their grades are one aspect, maybe how, um, the teacher teaches in the classroom. So observing that may be actually measuring how that child hears in background noise, that would be typical in a classroom.

[00:12:33] Um, looking at their speech language goals, because many times these kids are working on hearing High-frequency consonants like S F TH, which are very difficult to hear in background noise. So looking at those types of reports, looking at their hearing in general and what they can hear and not hear with their hearing aids or cochlear implants.

[00:12:57] And let's see maybe some questionnaires with the teacher, with the parent, with the actual student, if the student is able to self-report listening difficulties. And, um, again, just trying to gather it, gather information from all angles, other reports outside reports. And then you come down and try to make all of that understandable for the teacher.

[00:13:24] And so what I do is I try to pull from all those sources and then create a summary that says, these are the areas in which this child is really struggling and in his or her educational plan or IEP or their plan. Um, there are these goals and this is how I think I can help meet these goals. And so I don't mean to go over the teacher's head, so to speak, but when I can document a technology can improve specific areas in their educational plan.

[00:13:56] I think the teacher and certainly the child's case manager, um, will be more likely to. Use it or consider it. Do you have any like tricks or tools that you like to use with teachers that is kind of an aha moment for the teacher? Who's like, Oh, that's what they're hearing. Well, definitely. Um, a long time ago, Linda Thibodeau recorded some.

[00:14:23] Some speech and noise. It actually was my friend, Paul Dybala doing the speech, and he's also an audiologist in the field and he read out a passage with, and without remote microphone technology, and he even recorded the passage, you know, close by and then from a distance. And, um, you can really tell a difference.

[00:14:44] And I think it's just such a simple thing. You can even play it from your phone or your laptop during an educational meeting. For an IEP meeting and just show not only the teachers, but the parents, even, um, how much of a difference this technology can make. It's just a simple demo even. And then another thing that I've done is actually let the parents try it out themselves with a system that's more appropriate for individuals with normal hearing.

[00:15:11] So just let them put it on. And I walk around and talk and then sometimes I'll have everyone else in the room start chit-chatting and then, you know, I turn around and walk around, you know, a demo and they really can see again in their own ears, why it might be easier to listen. With remote microphone versus without, yeah.

[00:15:33] Yeah. That makes sense. Because not only do you want the teacher on board, you want the student and the parents on board too. So everyone's sending the same message. Absolutely. It can definitely get tough with some of our older students as I'm sure, you know. Yes. But I think if we, we try to keep the others on board, maybe they can gently encourage their.

[00:15:56] Teens to continue to use the technology that we know will help them. Right. Which kind of brings me to another question that I think is important for our listeners to understand. So a lot of classrooms might have, um, a newer building and all of their classrooms might have a classroom amplification system or a sound field system, or classroom audio distribution system.

[00:16:23] However you want to call it. Exactly but. And then I've had different schools say, well, you know, we have classroom system, so we we're. We're good. So can you just explain a little bit about the difference of between a classroom system and maybe a more individualized system for students with hearing loss? Yes.

[00:16:47] Well, first of all, I think those classroom systems were really designed for normal hearing listeners. So they really only helped to Improve the signal to noise ratio by about five to eight decibels max. Closer to five in general. And so that's really not enough to help kids with hearing loss that really need to hear at a signal to noise ratio of like plus 15 plus 20 decibels where the speech is 20 decibels louder than the background noise.

[00:17:15] So they really were never designed for kids with hearing loss. And I would honestly never recommend a sound field system over a personal system. For kids with hearing loss because those personal systems will connect directly to their hearing aids and their cochlear implants. Again, taking that signal directly to the ear rather than having to travel through the air, um, through a classroom system.

[00:17:41] So it's just not as a direct of a signal. And at one point, even the acoustical society of America. Was not in favor of sound field systems, because while they do increase the signal to noise ratio, that only happens if the background noise level stays the same. But what they were reporting is if you make the signal louder we'll then the kids just get louder.

[00:18:06] So it raises the noise floor, so to speak, um, and ends up not doing as much good as you had hoped because. Um, because the kids, the noise can just get a little bit louder cause the signal did. And so that's another thing and, and certainly two other issues with sound field systems come up when the kids move from classroom to classroom.

[00:18:29] So you would have to have this good system in every class, including speech, language therapy, including PE. So they do need to hear in these other places to music and. All of the different rooms that kids will travel to throughout the day. And of course our middle school and high school students could travel to seven classes a day.

[00:18:50] So it's very, it's better and more individually fit. If we just use personal systems for kids, with hearing loss and even kids with autism spectrum disorder, too, they're going to do better. Even with that system, that sound right to their ear. Over a system that's in the classroom through speakers. Yeah.

[00:19:12] And then the other point, I think that has been brought up with the situation of COVID right now is a lot of hybrid learning where kids need to directly input into a computer. So that gives that option as well. Yes into that situation. So, uh, one other question, um, that I, I do have is you mentioned, briefly mentioned, like, as they get to teenage year, they may not be able or wanting to do, um, Um, or you know, a more individualized microphone at that point.

[00:19:56] Do you have a good assessment tool or anything like that that you like to look at beyond the hearing loss, um, to determine whether or not maybe a different technology might be more appropriate or no remote technology would be appropriate? I think once kids get older, we really. Want to be seen as an ally if possible.

[00:20:21] Um, so there have been cases where I did end up removing the remote microphone technology because the child, we made a deal and the student really came through on the grades and studied hard and was able to, to really do well, honestly, but listening had to have been harder. So it kind of broke my heart a little because I thought, why would you.

[00:20:45] Want to do that, but then again, I'm not a teenage boy, so I don't always understand what's going on. So I think I'm keeping on top of how they're doing, if you have to take it out. And then certainly there are counseling tools that we can use from the Ida Institute that can kind of see where the child's coming from.

[00:21:06] Or is there something else going on that we need to be aware of and share with teachers or parents? Try to most importantly, I try to step back and use empathy and understanding that because it's just such a crazy time in their lives. And so most of the time, I definitely want to try to keep the, the system in their educational plan and daily use and can kind of prove its benefit through speech and noise testing or other questionnaires proving.

[00:21:37] It's not really the problem. It's. Whether or not they choose to use it. So I think to, to get that to happen again, try it to be an ally, um, help trying to help the students see that their future goals even may depend on these grades and maybe using some more counseling techniques would be, would be what I would consider.

[00:22:01] Yeah. And I think your point of just keep talking to them and keep that door open and. Keep introducing them to, Oh, look what just came out. Would you like to try this and kind of planting the seed that way? I have found that with the mask and social distancing, physical distancing, some of my teens have been more willing to try the technology again, because they feel like it's, you know, hearing is impacting them more

[00:22:33] Yes. And definitely the type of classrooms. So I think. The masks have been hard for everyone, but even harder, certainly for people with hearing loss. It's just, um, I'll have to admit that I do have a hearing loss and that masks have really caused me to reevaluate whether it's a rising loss. So it's kind of a hard fit.

[00:22:58] And so I haven't really been a good hearing aid user, but I'm going to have to think about that now because it's been really hard to hear with no, um, with the masks muffling and the no visual cues, right. You realize how much you rely on people's facial expressions or all of that, that the mask a really masking at this point in time, let alone the acoustics that goes with.

[00:23:26] Masking too. So I just have to share just a little personal story about kind of my teenage years and beyond as far as FM technology goes. And this goes back to a long time ago. Um, when, um, FM technology was a neck loop, Um, that went about, and you use the t-coil on your hearing aids in order to get that type of a signal.

[00:23:50] So, um, I did not use any type of FM technology going through my school or elementary and high school. And when I got into graduate school, One of my professors was Dr. Carol Flexer. And so she said to me, if you plan on working with kids and audiology, you must wear an FM system. And so I, at that point in time, it was, you checked it out at the library at the university.

[00:24:24] So I came back and it was a Comtex. I bought them neckloop and it had a little box and I think I had to send my hearing aid back cause they wasn't even like the right MT, or T coil, um, what we had. So we had a lot of work to do, but, um, I will have to say personally, I thought I had got, I obviously got through, um, and.

[00:24:52] Had good enough grades to get into college and that kind of thing. But when I used it for the first time, I didn't realize how much I was missing because I had never heard that way before. And so when I used the FM for the first time, it was almost like. I had a whole weight lifted off of me. I could sit with it in the classroom.

[00:25:18] I could actually go to the bathroom during a lecture and still get what was going on, um, during that class. And. That was the first time in my college career that I got a 4.0 was when I first semester that I started using an FM system, because I didn't realize how much I was missing and concentrating, um, not using one.

[00:25:44] And then having that introduction, it was, it was life-changing for me. And the other aspect, which is hard to measure. And I think hard to report is the fatigue. And I realized at that point in time, how much I was concentrating and how tired I was. And when I started using it, I had all this energy left at the end of the day to do other things that I was missing out on.

[00:26:11] So I think that. Experienced for myself has been a reason why I, from my more personal perspective, I always been an advocate for, um, remote technology or improved signal to noise ratio in certain situations. But do you have any stories like that? Like success stories about any students who, um, have used a system and it's been like a aha moment for them?

[00:26:43] I, when I worked in the schools, they really, a lot of them never had a problem using it or did not want to use it, or, but I think one of the more recent things that happened to me, um, it's not that recent, but you know, when I started doing research in autism spectrum disorder, I was honestly a little bit nervous because I thought I'm never going to get these kids to use this technology.

[00:27:10] But, um, they do. And they will, if you, many of them will, if you work with them. And these are kids with normal hearing, but they have this processing problem because of their autism spectrum disorder. So it was actually a little girl who didn't speak that much at all, but, um, she would talk to her mom some in short words, And I, she was doing a study with me.

[00:27:36] And so they were using a remote mic technology. That's appropriate for kids with normal hearing. And she wore the devices on both her ears. So they were personal, a personal device and they went to, um, They went to Target. And the mom said, this is the first time they've ever been in a store. And the little girl stayed on task and actually helped put things in the cart.

[00:28:02] And she said for the first time in my parenthood, this was an amazing shopping experience. And it sounds so, you know, crazy, but, and then another similar parent, uh, in the same study said that. It was the first time she ever had a conversation with her daughter and they talked about the cocoa, they were drinking the hot chocolate and she's like, she's never had a back and forth conversation with me.

[00:28:27] And this little girl was eight years old. Wow. And she said, um, and because of that, I am just so thankful and excited. And so I think. You know, that's why I love remote mic. Because again, for whatever reason, whether it's the hearing loss or a processing problem, particularly in background noise or even attention problems, we've seen these remote microphones are really helpful when you're in a one-on-one communication situation or in a direct instruction.

[00:29:03] So I think, um, they really have such amazing potential. We've talked a lot about kids, but also in adults. And I really wish they would be, um, standard fit along with a hearing aid because like you, you didn't, I you'd used hearing aids for a long time, but had no idea how beneficial they could be because you just hadn't done it.

[00:29:28] And if we, you know, kind of made it standard practice and said hearing aids for everyday use. Remote Mike for these situations and just explained it that way to patients. I think we'd even have a lot more successful users who will get their hearing aids. Out of the drawer and actually wear them. So, because we know that hearing aids and cochlear implants don't help.

[00:29:52] And I mean, they help always, but they don't always help in the most adverse environments. And that's why people put them away because we don't live in a quiet world. Right? Yes. That's why I put mine away. It's hard. Cause it, it really. Someday, maybe some amazing engineers will be able to figure out algorithms to completely separate the speech and noise.

[00:30:15] But I doubt it because sometimes the noise is speech, so right. It's speech, speech from others, you know, in the background. So, you know, yeah. Hearing aids and implants are so amazing, but they just don't do a good job. but separating speech from background noise. Yeah, maybe you need to get a remote microphone with you as well.

[00:30:40] And maybe that won't be in the drawer. I haven't tried, um, in a few years, but I'll get back to that, but you're right. I should just get the remote mic with it and then I'll be happy. We'll have a little counseling session here. Motivation session. Yes, but I guess I have one other question kind of getting back to your success story with the eight-year-old who, uh, did have our autism spectrum.

[00:31:10] How long did it take for that student to kind of accept the technology? Well the study, most of the studies that I've been doing are with more high functioning kiddos, but I have had some kids that are non-verbal, who will also accept it. Sometimes they don't want to do it when they first come see me in the clinic or for the study.

[00:31:31] But what I do is I try to have loaner devices so that I can explain them to the parents. And let the parents try to put on the receivers at home, which is a much less threatening environment because kids with autism spectrum disorder do not like change. They do not like their routines messed up and they do not like new.

[00:31:53] So if I let them take it home and let them work on it over time. And I've done that as a school audiologist, too. If you're able to loan it to them, to work on, then even the kids, you would never expect to accept it. They will. But other than that, that more high functioning kids that I can explain what this is and what it does.

[00:32:15] And then I like to play a game with them where everyone tries to guess what I said, but I say it right in the microphone for them. So they'll hear it better than anyone else. Um, in a room full of, you know, maybe a graduate student and their parents, um, then they'll win the game. And, um, you know, that works for younger kids and for older kids, even, they, um, are often struggling at school and are willing to try.

[00:32:41] This, this type of technology pretty right off the bat. And especially when I tell them that secret service agents use it. Yeah. That's probably a huge thing where they can be part of the secret service, everything that their teachers are saying. So, um, a couple, uh, just the other question that I was thinking about, uh, we've talked a little bit earlier and right now about.

[00:33:08] The standard, you wish the standard of, um, hearing aids and cochlear implants would include like the remote microphone technology, but it typically doesn't. And like you said, there's always a price tag that goes along with it. Do you have any like advice that you would give parents as, you know, using at home or advocating that way?

[00:33:33] Um, I think one of the ways to do it, at least for children is certainly to let them know that they have the right to request that technology at school and through their educational plan or IEP. And really even if they have to look for educational need it's it should be there. The audiologist is. Yeah, asking the right questions and looking at the right data.

[00:33:59] So I think educating them, letting them know that they need to make that a part of their educational plan, um, is really important. And in many cases, schools will even let the kids take it home for purposes, where they might really need it and they would get, be getting language development and, um, For adults, certainly.

[00:34:21] Um, they can just add another expense. So that is tough. However, with some of the new, um, device specific remote Mics, they're really only a few hundred dollars. So I think that's a good option for an adult. And with many of those devices, they can even connect it. With their phones and things like that that make communication easier and other situations as well.

[00:34:48] And I've seen that with some of my teens now who are getting hearing aids and a new technology, and they might have a device. A specific remote microphone and they're using it too. So I think that's exciting to see. Yes, definitely. So wrapping up, like I thought I would ask you about the future of technology.

[00:35:11] What would you love to see as a researcher, um, be developed, do it or come out with, well, we we've had this before, but I'd like to see it become more mainstream where the receivers for the remote mic are built in. Two hearing aids and cochlear implants so that all they're really having to buy as an inexpensive transmitter or microphone.

[00:35:35] Um, so I would love that to become standard practice and I think. That's a possibility, especially as we improve battery technology, which is another thing I would love to see more, um, rechargeable devices, cochlear implants have become pretty good about having rechargeable options, but it's still not super common in hearing aids.

[00:35:59] Um, particularly those that are power hearing aids. So I think continued improvements. This is kind of engineering 2 engineering requests, me to the engineers for batteries, uh, better, you know, rechargeable batteries for the environment too. And then more built in remote mic and then also continued improvements in signal processing.

[00:36:23] So we talked about that speech and background noise. So, again, this is an engineer request, but, um, that's some of the limitations we have, you know, in the technology and it's the signal processing that's, Developed that the companies develop and that researchers developed. So I think technologies to improve, um, speech and noise.

[00:36:46] And also I'd like continued improvements for music and cochlear implants, because there are a lot of musicians with cochlear implants or people who won't get a cochlear implant because they're a musician. So. That's another area I would love to see continued growth. So hopefully those things happen and that is the future of technology, but I really love how things have become seamless.

[00:37:14] So also just continued, um, improvements. I mean, some audiologists will scream about Bluetooth or a lot of them will. So I just hope the wireless technologies that we're connecting to hearing aids and cochlear implants improve the connectivity improves, and that it's kind of easier on the audiologist and the user so that, you know, we're not always pairing this and resetting this and redoing this and just making it easier, which will also encourage people to use it.

[00:37:49] Right. Yeah. I think that's a huge acceptance piece. So if it's a mainstream technology that everybody's using and I can just steam directly, then that's huge and acceptance of different technologies. So it makes it easier for everyone when you can do it that way. But, well, I just want to say thank you for coming on today's podcast.

[00:38:16] I think this is a great conversation about why  hearing aids and cochlear implants. I would always enough and that a microphone is important. Um, in situations where they may be, uh, adverse, um, listening environments that are a little bit more difficult. And I hope our listeners gained a lot from that.

[00:38:36] And, um, Eriun, I can, link up any your information and, um, any maybe articles or, um, Your webpage, uh, to the show notes. So if anybody has questions or wants to get ahold of you, um, they will have a link to your information if that's okay as well. Of course, anyone's welcome to email me any time. And I've had such a great time talking about these things that I absolutely love.

[00:39:06] Well, good. Well, thank you again and thank you listeners for listening and, um, come back next time.

[00:39:18] Hey listeners, this is Dr. Carrie Spangler, your host. I hope you all enjoyed that great episode with Dr. Erin Schafer. We touched on so many important points about hearing technology, specifically, remote technology. And digital modulating systems. Children and adults with hearing loss need an improved signal to noise ratio of approximately 15 to 20 decibels, especially in compromised setting.

[00:39:50] When they compare to their typical hearing peers. I wanted to add a slightly different view as an educational audiologist, as it relates to classroom amplification and my own experience in the school settings wyen a room has reasonable room acoustics and a teacher sets, classroom listening expectation classroom amplification system have provided a positive signal to noise ratio to the classroom.

[00:40:18] For listeners with normal hearing, this enhances the learning and teachers report that they have less vocal fatigue. There are certainly rooms that I have visited that should not be amplified due to poor room acoustics to begin with. As Dr. Schafer noted hearing technology overall keeps providing opportunities to advance research and find the best solutions to use across a variety of settings, as well as for individuals with hearing challenges.

[00:40:52] Thanks everyone for listening to empowerEAR Audiology, and don't forget to wear the mic. This has been a production of the three C digital media network. 

 

Episode 13: EmpowEAR Audiology - Deanna Magda

[00:00:00] Welcome to episode 13 of empowEAR audiology with Dr. Carrie Spangler.

All right. Welcome to the empowEAR Audiolog  podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey living with hearing challenges and this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.

It is my hope that all of the listeners will learn something new and be empowered after each episode. So whether you're a professional, a parent, and an individual with hearing loss, or just want to be inspired, I am glad that you are here with us today. I would be grateful. If you can take a moment to subscribe and give a positive [00:01:00] rating for the podcast, you can also follow us on our Facebook page, empowEAR audiology and and engage in the conversation.

A transcript of each episode is available on the  3C digital media network webpage. So let's get started with today's webinar with today's podcast. I have been on line too long today, and I don't even know what I'm thinking today. So today I have a guest, um, that I just met today. Her name is Deanna Magda, and she is an itinerant teacher of the deaf and hard of hearing in New Jersey. And she works with children from birth through high school to develop their listening language and self advocacy skills through early intervention. And also in the schools.  she is currently. And her third year of training for her listening and spoken language certification in auditory verbal education.

How exciting. And she creates these [00:02:00] wonderful, amazing resources through her online store, listening fun to help teachers of the deaf, speech, language pathologists, and audiologists to children with hearing loss more easily and effectively. So I am really excited to have you today. Deanna. Welcome. Thank you so much.

I'm so happy to be here. Well, I just have to say that. I think I bought every single one of your resources on teachers pay teachers. You are so king.  And I just want to say you are so talented and, and your creativity and putting materials together. And I know we're going to talk about that later in the podcast, but I'm always curious to find out how people kind of ventured in the field of, deaf education or working with individuals with hearing loss. So can you just share how you ventured into this field?

Sure. It was actually kind of by chance. [00:03:00] I didn't know anybody when I was younger, but I knew I wanted to work with kids because I have a younger brother who's 14 years younger than me.

So he was like a baby baby when I was a teenager. And I just like, I loved him being around as a baby and it really made me love like little kids and wanted to work with kids. So I had that in my mind. And then I went to college and I went to the college of New Jersey. Just because I liked that at school, not for the program in particular, but when I was on my first tour, the girl giving the tour with a deaf education major, and I just thought it sounded like the most amazing, like most cool thing ever.

She was talking all about like sign language and our classes and all the cochlear implants. And I was like, I have no idea what you're. Talking about, but it sounds amazing. So I kind like thought about it for a while and then I just decided to do it. And here I am. So it was kind of random, but it really worked out nice because I get to work with kids, but it's [00:04:00] more individual than being a classroom teacher, a little more specialized, a little more interesting.

Um, and I'm so happy I had that random tour guide that one day because I don't think I ever would have found it otherwise. I seem to hear a lot of people fall into the profession in some kind of random way. And it's always so interesting to hear. How did you get connected. So thank you for that wonderful tour guide that happened to be giving that tour, that one random day that you were visiting.

I know, I wish I remembered her name because it's such a small field. Like it's such a small world. Like I bet we would know each other. If I like could remember her name, she's probably like four years older than me. Well, I thought you might run into a someday because I'm sure new Jersey's program.

Wasn't huge. And you'll probably find them on LinkedIn or Facebook or some kind of social media. Yeah. I mean, if you're a teacher of deaf  who did tour that day and like, 2012, you know, email me, [00:05:00] maybe you'll find them through the podcast today. Would that be fun? So you work with all the way from the little ones all the way to high school.

Can you just share a little bit more about your job and who you're employed by? Sure. So I'm an itinerant teacher of the deaf and hard of hearing. And my main role is to support children in the mainstream schools. So that's pre-K to high school and that's what a lot of teachers of the deaf do. Um, I work on the County level, so I work with like a team it's like a big program.

And the different towns, New Jersey has a lot of very small towns. So a lot of districts don't have their own teacher, the deaf. There's just not enough students to support one. So if they have students with hearing loss, they'll contract with the County and we'll go from school to school to support them, and we either push into their classroom or pull out for.

Individual services and we mostly work on, you [00:06:00] know, listening, language or self-advocacy along with like their team or like kind of on their educational team. On top of that, part of my caseload is early intervention because I am personally very interested in early intervention. Like I just love the babies.

I love like the real,  foundational listening skills part. So I'm very lucky that in my job I'm able to do early intervention as part of my caseload. So I have like maybe a third early intervention and like two thirds school age. Um, but that is. Kind of what I do to support their listening and language skills.

I'm not their main teacher for any of them. I kind of. Support them in their learning. So is your early intervention in New Jersey under the department of Ed? No, it's actually under the department of health. Okay. That's what it is in Ohio too. So I was just curious about that too. It's a little different, very interesting.

I was able to get a COVID vaccine because of it. Oh, perfect. I'm still waiting for [00:07:00] mine, but hopefully we are going to be soon. So what. Got, uh, I guess what, um, was one of the reason that you decided to gain more education and training for listening and spoken language for certification and auditory verbal education?

So when I first started. All of my students actually just by chance were using listening and spoken language. And even still now about 95% of my students on my caseload, um, use listening and spoken language. And I realized that if I wanted to do early intervention, I really was going to need more training in that area because my I I'm a teacher by training.

So my, my schooling was really focused on education. On, you know, best practices for teaching, reading and social studies. And we had some classes on auditory verbal therapy, but not enough to really not enough, you know, to do it really well. [00:08:00] So I definitely wanted to get more skilled in that area of the.

Um, you know, aural habilitation and all of that, so that I could, if I was going to do what I really wanted to do it like, well, you know, I really wanted to be really good at it. And I was also, I'm always one of those people, like I loved school. I love learning. Like I like to read, like, if there's some, if there's more to know, like I want to do it, like, I just want to get as much information as possible.

So it was kind of a no brainer for me to. Um, go for my auditory verbal ed education, um, certification. And because I am a teacher, a lot of my hours are in the schools, but it's actually really helpful for teachers too. Like, even if you don't do earlier, I mean, if you do early intervention, I feel like. It's super, super helpful.

But even with the school age kids, because you know, if you're working with preschool or if you could still have new listeners, you know, I've had bunch of kids better, late identified, and then they go to preschool and it's like, here's [00:09:00] this kid in preschool who really needs some foundational listening skills to develop.

And the auditory verbal training has come in handy a lot there, but also. Just like a lot of times for itinerant teachers of the deaf, we have to support the academic content and that's kind of our first priority it's to help them access there. They're general education classes. And so I plan all these fun listening activities and like games, but if they need help with their social studies, like that's going to come first and I have to be able to embed their listening goals into that full day of activity.

So I feel like going through my LSL certification has just helped me internalize those strategies and it makes it so much easier to work in those listening skills, into the content that I'm supporting anyway, in the schools. Yeah, no, that's great. I'm so glad you're, you're going through that process because we need more [00:10:00] teachers of the deaf who have that kind of certification and extra, uh, learning experiences as well.

Because like you said, 95% of your kids are using listening and spoken language. And to have that background probably to share with teachers and parents and your own knowledge is really valuable. Yeah, especially too. Cause a lot of times, I mean, when I have an educational audiologist on the team, I like so happy.

Cause they're like super, super helpful, but a lot of times I'm the only person on that child's educational team who knows anything about hearing loss. So going through the whole process, I've just learned so, so much every day I feel like right now I'm in my third year. So I'm studying a lot for the test and I'm still like the amount of information.

I still have to learn just like blows my mind every day that I'm like practicing, but I feel like just having such a good base of knowledge really helps when you're the only person on that team who knows anything about hearing loss. Like, I feel like it's really important to really know [00:11:00] your stuff. And I didn't even know.

You don't know what you don't know. Until you learn it. So it definitely, it definitely helped me be a stronger advocate for my students and a stronger resource for their teachers, because I feel like I, I know what I'm talking about and I have a much deeper understanding of it than I did before I started.

That makes a lot of sense. So some of our listeners and I get this question quite a bit, working in the schools as well is. Can you just define what is a teacher of the deaf? I mean, I know what it is, but I want to hear you define it. Okay. So a teacher of the deaf and that I would say a teacher of the deaf and hard of hearing personally is a, um, because people miss hear you and they're like, well, what?

Doesn't like a teacher, um, It's a teacher that specializes in hearing loss and its impact on education. So typically the areas, if you're working with, um, children who are [00:12:00] mainstreamed and use listening and spoken language, typically we focus on lists like, uh, auditory skill development, language and self-advocacy, and those are things that are not unique to hearing loss, but especially important for children with hearing loss because.

It all goes back to accessibility. So the children need to be able to access. Their education and a teacher of the deaf knows how to make that happen. And other special ed teachers, SLPs, they have so much good information, but not that specific information. And if children don't have the right access, they're never going to be able to be successful.

You could be the best special ed teacher, the best SLP. But if that child hearing aids are not working, it's not right. So that's kind of what makes it Tod different. It's just there. They're just specialized and they have that knowledge. To support those students and to really make sure that their learning is accessible in a way that if they weren't there, they would just be missing [00:13:00] stuff.

And wouldn't even know it. And how do you feel like you insert yourself into that team? Because I know you said, obviously you're doing a lot of itinerants or you're in and out of buildings and you might not be there every single day or you're there once a week, or I don't know what your schedule is, but how do you kind of make sure that your role is, is key and that educational team.

Yeah. I mean, that's a really good question because it's not easy sometimes.  some teachers, the deaf work for one district and then they are like, they know everybody in that district, but since I don't actually work for the district, I don't know them until I introduced myself to them. It's actually been a little bit easier now during the teletherapy that tela learning, because.

We can like schedule. It's very easy to like schedule a quick zoom with the teacher and talk to them as opposed to trying to talk to them in the classroom. But I think a lot of it is we do an [00:14:00] in-service at the beginning of the year for many children, uh, where we introduce ourselves and just give like general strategies go over their IEP or go over their audiogram.

Whatever it is to like prepare them to have a child with a hearing loss in their class and go over the equipment. And I think that's a really good way to start because you can get in there and like tell them who you are and tell them that you're there to help. Um, and a lot of teachers are overwhelmed by the equipment at first, that seems to be like their sticking point.

So being able to show them that I can help them with that. Like I can help fix their biggest problem, which is usually the equipment. Then they see I'm there to help. I'm not there to change their teaching. I'm not there to, you know, do anything different. I'm just there to help this student access the teaching that they were already going to do.

Um, and kind of presenting it from that angle is that I'm here to make your life easier. Not harder is always how I try to frame it. And then I always try to get in with the [00:15:00] SLP. cause usually they have some understanding of hearing loss and a lot of them are very interested in what we do because it's very related.

So I always try to get in with them. And, um, a lot of times it's always good to, you know, check in with the school nurse. A lot of times they keep battery, even equipment. There it's always a good person to just like loop in. And then the case manager I always meet with to make sure that they know who. Who I am face to face.

Um, and it's hard. It's a little hard, but as long as you hit all those bases, usually people are pretty good because you can help solve their problems like student isn't doing well. If a random student isn't doing well, the teacher is kind of on their own to figure out why, unless they have a special ed teacher or an SLP.

But if this particular student is struggling, at least they have someone to turn to and I can help. So that's kind of how I try to approach it. And a lot of schools, we do push in. Like we joined the class and I always tell them, like, I can take [00:16:00] a small group. I can help, like, use me as a resource. Like, you know, like I'm an extra set of hands.

Do you have 20 kindergartners? Like, let me help you. You know? And a lot of times they, they, they don't mind that they like that. So it's definitely an interesting balance. So how many kids do you have on your caseload? I think right now I have. 16, which is not that many compared to some teachers is enough.

I hear case loads that are like crazy high in some places. I don't know how they do it, but I do a lot of direct service. So I only have. For us. Sometimes we have mostly older kids who no longer need direct services. And we go in once or twice a month to like observe them and make sure their equipment's working and check in with the teachers, make sure everything's caption and like stuff like that.

I don't have a lot of those. I only have a few, most of my students are direct. Like I see them for an hour, a week, two hours a week, three hours a week. Something like that. [00:17:00] Um, plus the travel time. And like I said, like, I think like five of those are families, babies. Okay. Yeah. That's a lot then.  when you think about the ages and kind of that workload and the travel aspect of it and the amount of time that's needed.

Yeah. I'm super lucky in New Jersey. We're so densely populated. I don't travel that far. Like I'm, I'm not in a huge, I mean like a half hour radius. Where I live all the time, basically. Um, that's not the case.  You said for some people, even, you said you're in Ohio. I think even there, like, like they're more spread out and then like places that are more rural it's like they have huge areas.

It's insane. Like the territory they cover, it's really impressive. Um, so I'm very lucky that, you know, I'm in a small, relatively small area. So I don't travel more than half. If I travel a half hour, I'm like, wow. To drive really far for that one. Like that was a long day today. You're traveling. Right. [00:18:00] So what do you think some of you, I know you've kind of named them, but the biggest challenges as a teacher of the deaf and hard of hearing, I think the biggest one is just having such a big age range and ability range on your caseload because.

I felt like in the beginning, have you ever heard that expression where it's like a Jack of all trades, but a master of none? That's kind of how I felt. I felt, I still feel sometimes. Um, because you, so from like a preschooler, who's a brand new listener to a 10th grader. Who's working on self-advocacy to a first grade or learning to read and it's just like what?

Yeah. Like it's a very hard to be good at everything and to be An expert in everything that everyone needs, especially like in the beginning, because you have to like, like, you're like a student needs help with reading and you have to go home and Google like strategies for helping with reading. And then like, and then [00:19:00] you get the, you know, the brand new listener and that's like in your, your wheelhouse, but.

You know, you have to prep all these materials for that one kid. And they're the only kid on your whole caseload. That's going to use them. So that time management of planning for so many different levels, it's not like you plan one lesson, you can use it with 20 kids. You kind of got to individualize it for everybody, um, which it can be challenging, but that's kind of when I started making things, I purposely made them so that I could use them.

With like a bunch of different students, because I knew I wasn't going to have time to prep a different lesson for everybody. Um, just, you know, it was just not enough time in the day. Um, but I think that's kind of like the flip five, like you get to work with students one-on-one but because you're working with students, one-on-one they all are going to have individual challenges that you get to address.

Yes. I can imagine that, which kind of gets to. A celebration of yours, I think [00:20:00] is all of your listening material that you have been able to develop. So how did you get started with listening fun? Do you want to just kind of share what, what you're listening fun website? Sure. So listening fun is my teachers pay teachers store where I make, uh, materials for teachers of the deaf,  SLP, and audiologist. Anyone who works on listening language or self-advocacy skills. And it started because in my first job, I wasn't, I was at a different location and it wasn't as big a program. I didn't have a lot of resources. I didn't have a lot of people I could ask for help. So I got my caseload and they're like, okay, who teach them?

And I'm like, Oh, I don't have anything. Like, like I would Google it speech stuff. And I found language stuff, but I was like, there's nothing about self-advocacy and there are some, some programs out there, but like not a lot and not like little things here and there. So one of the first things I [00:21:00] made was like a little booklet to teach a kindergartner about her FM system.

Like, and it like made, I used a shape and I made it an FM and I like made a little person, like it was a rough, this actually, I think it's still up in my TPT store. It's definitely needs an upgrade, but that's basically how it started with, because I just didn't have any. Self-advocacy resources. And I couldn't find any that I liked.

So I started making them and I was like, well, I might as well post that. I'm like, I spent all this time making it, you know? Um, and then I also started making some listening ones that were specific to my kid goals that really focused on audition and not so much. I mean, they focus on language, but they focus on language,through audition, which is a little different than some SLP resources out there.

Um, and like I said, I needed things that were very versatile because I wasn't going to prep a million things. Um, so that's kinda how it started. And then I just kept. Like making them because I needed more things. Um, [00:22:00] and every year I got different students who needed different things, so it just kind of snowballed from there.

But I really enjoyed it doing it. Like it started out out of necessity, but then it continued because I really enjoyed doing it. Like, it was very satisfying to like start with a blank page and then like create something and then like, Have something that I could use to teach a child something important, like that felt really satisfying and made me feel good about myself and just like making the products too.

Like I felt like I was learning and made me a better teacher, because I had to like research what's the best way to teach this. And then I would make the product based on that strategy. Yeah, that's kind of how it started. Yeah. Artwork is. So, uh, your creativity from that blank page to your final product is I think they engaging for the kids.

It's up-to-date it's. Fun. It's colorful. It's easy to use. Thank you. That means alot. . I try very hard to make it engaging [00:23:00] for the kids. Like, I, I feel like a lot of kids, kids, like when I take them, like when I pull them out, some kids don't love when I pull them out. So I really feel like I have to work hard to get them hooked in, to like, want to hang out with me.

And like, I, I appreciate you saying that because I do work. I try very hard to make them fun for the kids. Do you have a favorite one that you like to pull out a lot or that you use quite a bit? Yeah. My favorite one is I have this like series of little booklets. Um, it's called my self advocacy series and I got this, like, I found this like illustrator who made me all this custom artwork of like the kids wearing different devices.

Then there's basically like little social stories about different self advocates. Self-advocacy scenarios, but I felt like that's exactly what I wanted. And it took me a couple of years of making resources to be able to make something of the caliber that I wanted. Like, I wanted things that looked really professional and really nice.

Like I [00:24:00] felt like that's what our kids deserve. Like I can make my own little clip art, but I really wanted something like. Nice. And the kids can see themselves represented and it looks just like all the other materials in the classroom. So those are definitely my favorite. What I'm most proud of? Yes.

And I think I have those downloaded as well. I was gonna say, I love your Jeopardy game too. That was a lot of fun. And I was sharing before the podcast with Deanna that we have a leadership support group for teens and tweens with hearing loss. And at our last zoom meeting on Friday, this past Friday, we used your jeopardy game as a way to talk about advocacy and technology and accommodations and support.

And it was nice to have it already created the kids actually got into the game. They were excited about it and they were learning at the same [00:25:00] time. So I think that's important. And the, I like making the games because they're not. That like deep, but sometimes it helps just to have something in front of you.

Like there's nothing more awkward than pulling a kid and sitting down and having nothing in front of you and being like, we're going to talk about self advocacy. I can see, like some of the kids were like, no, they don't want to share their problems. They don't want to just like tell you what they're struggling with.

Like, I just found it so awkward to not have something so that we could. Work on together and then naturally those things would come up. So like the jeopardy game, or I've been making a lot of games like that recently because, um, I'm virtual for a lot of students and I just need something even more fun to keep them engaged over zoom.

Um, and it's just nice to have like a starting point with some of those self-advocacy skills, like just something to start with. And then you can take that discussion. Anywhere you need to go to cover what they need, but I just felt [00:26:00] so awkward in the beginning when I didn't have something in front of me.

So that's kind of where that came from. So I think you've also dived into boom Cards a little bit. Am I right? Yeah. I love boom . Cards are so fun. So could you share a little bit about your, a couple of your boom cards and you focus on those? Yeah. So I use them mostly for my younger students, like preschool, kindergarten, first grade, because those itty bitties are very hard to do zoom school with.

So you really have to bring your a game in terms of like engaging resources. And there are a lot of really fun Boom decks out there. But what I really wanted are things that I could focus on audition or learn through audition. So a lot of my boom decks, they have like pieces that are covered. So like I have a whole deck called like mystery boxes, which is basically like, I'm sure you've seen in real life, a million times [00:27:00] AVTs do an activity where they put things in a box and you shake, shake, shake, knock, knock, knock, open, like, you know, you've done it a million times.

And I do that over teletherapy with a real box, but. I have a whole deck where everything's hidden under boxes. So you can play a bajillion different games and you shake, shake, shake the box and you open it and there's stuff underneath it. And like, that's the kind of thing where it's the same thing I would do.

It's very AVT. It's very different than speech. But on a boom deck. So I kind of, I try to incorporate more listening based activities in the boom decks and less visual, not less visual, but definitely doing it in a way that lends itself to audition a lot easier. Um, without having to, you know, make it work.

Now, I think a lot of people appreciate having creative materials to do on tele therapy sessions right now, because we're running out of some ideas and to have fresh ones and, um, engaging ones with the little ones. I really helpful to have right now [00:28:00] there's fun. There's a lot of fun, little boom tricks that I'm learning.

I feel like every day I learn a new, like little trick, like there's one where you can like make it. So it looks like a flashlight is shining on the page and you just see. Parts of it. Like, I just learned how to do that. So I made one like that. Like I made one where it's like a little magic potion. Like there's all sorts of like fun little things that you can do.

And they really do help get those four year olds to pay attention to. It's not easy. So I, and because I, you know, because I. I don't have all preschoolers. I can't spend all of my time making boom decks, but I can make this one specific boom back that will last me a month because it's comprehensive. So that's what I try to do.

Like, I really just want to make people's lives easier. So if you could use the one winter boom deck for like a month, cause it's got, you know, the same activity, a bunch of different times, but like the vocab is different and it's like familiar. If that makes sense it does. And then you'll be able to use it next winter when you [00:29:00] have a new kid who needs that auditory skills development.

Cause you can do it on the iPad too. So it's actually kind of nice when we're back in person for itinerant. I mean, I'll still bring my toys and stuff. Um, but it's nice to have a backup of just gives me a bunch of activities on iPad. I taught that you could always just have with you. At all times I'm at the backup.

Right, right. And I know you have quite a following on your Facebook page too. So how do you get people to engage in and tell me a little bit about your Facebook page. I don't know. I don't know. Do I have a lot of, like, I have a Facebook group that I, I think people, I like the Facebook group because a lot of teachers or teachers of the deaf are by themselves all day.

So even, even me, I'm on a big team, but I don't see them every day. I see them, I can talk to them, but it can be a little isolating. And for some people they don't have anyone to ask for help. So I do think people [00:30:00] like having a group where they can ask questions and there are a bunch of teachers that have Facebook groups I'm on Facebook, but I really try to keep mine like.

Positive and like focused and full of good information. Like all share things that I find in there. Um, and on Instagram too, I just think people like to have options and they like to be able to. Talk about it with other people, because I mean, you've been taught, I feel like I'm T I'm trying not to talk fast, but I talk back when I get excited and that's because I don't have to talk about this stuff often.

Like, like I feel like my, my parents and my boyfriend are tired of hearing about that. So. You know, I feel like once they get that opportunity to talk about what they're passionate about and ask their questions, like the excitement comes out and they just appreciate having a spot to turn to when they need help or need ideas, or they're just kind of in a rut or something.

Yeah. And I think the, everybody has such good ideas and this, that kind of network and [00:31:00] Facebook group is really important to get everybody connected to. So, yeah, I'm like amazed by some people's creativity. Like I, I share other people's ideas all the time because. I'm just like super impressed. And like I said, like, I, I feel like I absorb information just like so quickly.

Like I just take everything and like and give it all back. Like I'm like everything I know. Please take it or leave it. We, I know, I appreciate it. And I know a lot of other people who have. Downloaded your resources and really appreciate all of the effort that you put in and your graciousness to share it with everybody else too.

Is there anything else that you would want to share with our listeners, whether it's about being an itinerant teacher of the deaf or hard of hearing or any of your self advocacy and auditory listening resources that I might not have asked you about? Um, I would just say that if people are listening [00:32:00] to this podcast, they're probably interested in hearing loss and to think about being an itinerant teacher of the deaf, because I know when some people hear that you have to drive from school to school, that turns them off, but really it's very nice.

To work with students. One-on-one to be flexible with your schedule and your kids, aren't back to back because you have to drive to each one. You have time to think in between each session. It's actually kind of nice. It's a little rough in the New Jersey winter, but it really is. If you want to work with kids and you're interested in hearing loss, it's definitely not a bad gig.

Like I really, I think more people should get into it. I agree with you and I work for a. I think it must be similar to what you work for in  New Jersey where it's like an educational service center. And we are contracted with multiple districts and serve multiple areas and the teachers of the deaf and hard of hearing that I had the opportunity to work with.

I am always so grateful [00:33:00] because. I know I have somebody that I can connect with at the school who is kind of always in touch with the kids and able to let me know, Oh, someone says the equipment is not working. Can you come over here? But I have someone that understands that foundation of why access and technology and listening is so critical for kids with.

Hearing loss in the mainstream setting. And to have there needs to be more of you but we need to like duplicate Deanna. Is that right? You need more ideas, more other people. I also want to just say, I think it's amazing as feel young. Professional and teacher of the deaf and hard of hearing who is furthering the expertise in listening and spoken language.

And we need more people like you out there because 80% of our kids with hearing [00:34:00] loss or hearing challenges are mainstreamed and so to have that. Support for the team is really critical to understand. Yeah. I definitely don't feel like, I feel like I have so much more to learn, but I'm glad to kind of like share what I learn along the way.

That's kind of what I. What I hope to do, you know, so I figure things out as I, you know, learn things I'm happy to share them with, with other people. So we so appreciate it. And I am so thankful that you, uh, were willing to come on the podcast. I know I just reached out to you, uh, and you probably had no idea.

And I said, Hey, do you want to be on this podcast? Because I think your information and resources and expertise is important to share with our listeners. So I thank you for being a part of this today. Of course. Yeah. I listened to some of your other episodes. I was like, this is very [00:35:00] cool. I would love to do this.

Well, I'm glad you took the chance and decided to become. Um, uh, come on the podcast today and for all of you listeners out there, thank you for listening today. And I hope you learned something from Deanna as being part of the podcast in today's show notes. I am also going to post the Deanna's, um, listening fun, , blog and our Facebook page and yeah.

Her teachers pay teachers length so you can get onto those different links and see all the amazing resources that she has shared with all of us. And hopefully you'll be able to put those into practice with the kids that you happen to be working with. So thank you again, Deanna. Thanks so much. Have a good day. Thank you

This has been a production of the three C digital media network. [00:36:00] .

 

Episode 14: EmpowEAR Audiology - Dr. Karen MacIver-Lux

[00:00:00] Welcome to episode 14 of EmpowEAR Audiology with Dr. Carrie Spangler.

[00:00:16] Hi, everyone. Welcome to the podcast. My name is Dr. Carrie Spangler, and I am your host. I am a passionate audiologist with a lifelong journey living with hearing challenges in this vibrant hearing world. I wanted to have an empowering power podcast for all of my listeners. Many of us learn and grow by being in communication and connecting with others.

[00:00:43] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional, a parent, an individual with hearing loss, or just want to be inspired. I am glad that you are with us today. I would be extremely grateful If you would take a moment to subscribe and give a positive rating for this podcast.

[00:01:10] Also, we have a Facebook page EmpowEAR Audiologist, join us and engage in the conversation about each episode. A transcript of each episode is also available on the 3C Digital Media Network web page in the section of podcast. So today I am overjoyed and grateful to have my own HEAR-O on this episode.

[00:01:37] And I defined a HEAR-O as someone who is a positive mentor, a support, a role model, and a friend. And I believe as humans, we thrive to be connected with others. And I have had the incredible opportunity to meet someone who walks in the same shoes and is truly a gifted connection. So let me introduce my.

[00:02:01] HEAR-O today. Her name is Karen MacIver-Lux, and she is an audiologist and also a certified auditory-verbal therapist. She is the co-founder of Thrive Together and she provides auditory learning services for individuals of all ages with hearing loss and hearing disorders in The Toronto Canada area.

[00:02:29] She is the president of Sound Intuition, a company that provides online learning experiences for professionals around the world who serve individuals of all ages who have communication disorders. She not only enjoys helping babies and young children learn to listen and talk with their hearing technology, but she also enjoys working with older teenagers and adults who want to improve their listening skills with newly acquired hearing technology by providing auditory skills training.

[00:03:04] She has made numerous contributions to the literature on the topic of aural rehab, but children and adults, and she has co-edited two textbooks on auditory verbal therapy. The most recent one published in 2020 called Auditory Verbal therapy, science research, and practice. And that is available through Plural publishing.

[00:03:29] She is a frequent guest lecturer in Canada and the U S and conferences around the world. She likes to say she's doing exactly what she dreamed of doing when she turned 11, which is a great segway into Karen. Thank you. Thank you for being on this podcast. I'm so excited to have you today. So welcome. It's so much fun to be here with you, Carrie.

[00:03:58] I always like to, um, kind of start out a podcast with how we know each other. Do

[00:04:10] remember that moment? Oh my gosh. There's so many more reasons than you do. First of all, you know I was doing a practicum at the University of Akron and, um, the supervisor that I had is a hard. Task masker. I should really say that hard task master. She, and, and, you know, those are some of the best teachers that we have, you know, in life.

[00:04:45] Right. And so I was nervous. It was my first day of working with her to top it off. I mean, it was very nervous, but, and, uh, so I remember grabbing your chart and.

[00:05:00] Is it okay if I talk about your yes, definitely. I'm an open book. You are definitely allowed to talk about that. Okay. No, I remember opening up your chart and I remember thinking, Oh my gosh, this girl has a hearing loss.

[00:05:17] So much like mine, except a lot more at a thousand Hertz, but the configuration much, we call a ski slope is really not that common. Right. And I was like, Oh my gosh. And this girl is close to my age and wow. Let's see what she's going to be like. And then, um, and then. I saw you walking to the room. And I said, wow, like she's so not only is she gorgeous, but.

[00:05:51] You know, with your bright, mouth smile, you're tan, you're blonde hair, your blonde back then, and university shirt on and so happy. So like just joyous. So I'm looking forward to the future and what it was about to bring you and. I thought, wow, like this is so amazing. And the reason why it was so amazing to me was because, and this is when I have to give you a little bit of a backstory.

[00:06:29] So when I was younger, the only person I ever met with a hearing loss, who was my age, was somebody, a friend who I had. I had my cottage in the summertime. And her family ran this restaurant that we used to go to all the time. And we knew she had two older siblings and she was my age, same, same as me having two older brothers.

[00:06:55] And she was home for the first time from her boarding school, which is a boarding school for children who are deaf and hard of hearing. And so she had, uh, actually better hearing than I did, but she was not wearing hearing technology. And she communicated with her family using sign language and. I thought that's great.

[00:07:20] You know, so when we got together and we met each other, uh, mothers introduced, you know, as to one another and, and she would immediately, she immediately had this look of disappointment on her face when she found out that I could not sign and that I talked instead. And so she's like, what's the point of meeting this girl?

[00:07:42] I can't talk to her. So we had a pad trusting, our hands and, you know, Uh, long story short, she was sad. She was, you know, not smiling a lot. And the reason why is because she couldn't communicate with her family and she couldn't communicate with me and she was missing her family at school. Who she could communicate with.

[00:08:09] And I thought, Oh my gosh, like, you know, maybe this is what it's like for so many other people. And nobody's learning to listen and talk. Nobody's hearing with the hearing aids. Nobody is able to communicate with their family, like I can, and I felt guilty about that. You know, I, I felt guilty for being able to be me and, um, and I, you know, and I grew up, I didn't meet anybody out and it was just older people who had acquired hearing loss and, and then I'm working in the university, working with adults primarily.

[00:08:52] And then in comes the room, uh, Beautiful happy, ambitious, talkative, chatty laughy, Carrie, and I. Wanted to cry and happiness at that moment. But you know, you can't do that when you're a student clinician, especially with our supervisor, but, you know, I was just so in, I was just like, Oh my gosh, she was a specimen.

[00:09:29] Oh. And yeah, I remember that. But do you remember about that? Come on,, it was a very similar memory, but I wasn't stressed out as a graduate clinician. I was, I got to come in as the patient. So maybe that's why I was so happy. I wasn't under the pressure. I wasn't under the pressure that you were under that day, but I do remember the same feeling once you.

[00:10:01] Introduced yourself. And you shared with me that you wear hearing aids, and I think you might've been using a Comtec FM system that day with a microphone on. And I think he actually had me use it so that you could hear me better. And I remember thinking the same thing. Here's this beautiful blonde who was in graduate school.

[00:10:29] With hearing aids like me studying to be an audiologist. And it was this kind of, I guess, turn, you know, my eyes were open with that because like you said, I did not know anybody else with hearing loss going through school. And I went to a mainstream school and similar to you, the only other person that I knew [00:11:00] with hearing loss happened to be, um, someone that I played basketball with and she was, um, her whole family was deaf.

[00:11:09] So she grew up with a, an ASL background and was they fluent in sign language.  So I wasn't able to connect in the same way with her. Um, as I, when I saw you, and I always say you're my, my HEAR-O, because it was almost a pivot point in my life where. I realized I'm not the only one. I there's someone besides my grandfather that wears hearing aids and my age, and it really was eye-opening to me.

[00:11:47] And. Um, motivational to me to see that I wasn't the only one. And so you gave me so much hope and finding, and I don't think at that point in time, I had chosen a major yet. So to kind of planting a seed, yes, you were planting, you were another person that planted that seed of going into the field of audiology.

[00:12:15] I think a lot of people say, how can someone with a hearing loss go into audiology? And I know we both have had people say that to us. And so we broke that barrier. We overcame that in a positive way. So yes, I think we both had this same. Story from a different angle of how we met. And it's quite amazing that we were both the first person that we met with hearing loss.

[00:12:51] Yeah. Yeah. And, and I can honestly tell you, it was one of the most memorable days. Um, most memorable feelings that I've had in my life. It was just. You, know, it's just so nice to meet someone like you, you know? And, um, and I was just, it really, really gave me hope. And the motivation to go forward in my studies as well.

[00:13:23] So thank you, Kevin. Well, thank you, Karen. And it's so amazing that we can continue to be so connected, which is best and good friends where you're like my little sister and spirit. And professions. So thank you so much for being my HEAR-O, Carrie. I so appreciate it. You're gonna make me cry tonight,

[00:13:57] but I think like you said, we have a similar audiogram and we have. I think a similar upbringing too, but I would love for you to share with all of our listeners, a little about your childhood journey, and growing up with hearing loss. And I'm sure we can both interject a little bit as you share your story with us.

[00:14:24] So yeah. Share a little bit about your childhood. My mom said that I had a very tenuous start to life, or what does that mean? At the time of my birth? My mother had complete placenta previa, which is when. The placenta is born first and the baby follows. So by that time, I, by the time I arrived, I wasn't breathing and had aspirated a lot of fluid when they were able to revive me.

[00:14:58] They also saw that I was a [00:15:00] really sick baby. And so I had. As a systemic infection likely because my mother had toxemia during her pregnancy. And so the doctors told my mom right off the bat, you know, we don't think your daughter is going to last through the night they did but I did. And when I, it was discharged from the hospital, the doctors told me or told my mother not told me, but they told my mother that she would need to make sure that my vision.

[00:15:33] Was okay. And because of all of that oxygen loss and they didn't however, mention anything about the gentamycin that they gave me to heal the systemic infection that I had. And so, and you know, that gentamycin is ototoxic and has the potential to cause hearing loss. Um, Fast forward as I was [00:16:00] growing up, my mother's saw that there was nothing wrong with my vision.

[00:16:06] But she did wonder whether I was hearing well. And that was when I was around 16 months of age. Now she's a music teacher. She played the piano all the time and she noticed that when she was playing the piano and the lower end. Um, which had all the base-type notes. She noticed that I was very responsive that I would move towards the music and even turn to the piano.

[00:16:34] But whenever she played in higher keys, I would just walk away or I would look like I wasn't interested at all. And so that was. Really worried her. And so she took me to the doctor many times and he would clap his hands and I would hear him and he would say, Oh, there's nothing wrong with her, her hearing.

[00:16:57] Um, fast-forward through [00:17:00] many more visits. Uh, and then, um, the sudden three years in 11 months of age, and I still wasn't talking, I wasn't responding appropriately to language and. So at this point, my mother took me to the doctor and she refused to leave the office until he had called the local hospital and got me in to see an audiologist.

[00:17:27] And later on that day, they discovered that I had a mild hearing loss at 250 Hertz. For those of you who really liked numbers, which sloped down to a profound hearing loss at a thousand Hertz. So, uh, you know, my mother was very, luckily, she was very persistent and very aggressive, um, advocating for me right from the start.

[00:17:56] And if you want her to do something,  you just tell her she can't do it. And then she will do everything she can to prove you wrong. And thank God. Bless my mother. So when the ENT told my mother that I would never learn to talk or even benefit from hearing aids, she's like, I don't care. You're going to have put behind the ear hearing aids on her and

[00:18:27] . this was the year that the really powerful behind-the-ear hearing aids came on the market for the first time I was able to avoid the body aids and, and, uh, so she got the hearing aids on as quickly as she could. And what was interesting was, and that was when I was four. That was the first time I remember seeing color.

[00:18:55] Hmm. When they put the hearing aids on and they turned it on.  Um, I remember the pin from the new ear mold sticking in, you know, how an shove it in your ear. And then the room study glow, the golden yellow color. And it was, it was just, um, Crazy because before then my life was like a black and white motion picture, um, that jiggled and, you know, darted and flows.

[00:19:34] And as I learned too, as I gained listening experience with the hearing aids, the world became more and more colorful. So for me, sound islike color, you know, I don't know what that's like for you. Do you remember getting your hearing aids when you were four when you were young? I do. And I could probably just say that your story is an exact mirror of my story.

[00:20:04] No, it really is. So again, like, just like your mom, um, the placenta broke away too soon, which caused lack of oxygen. And so I was born, my APGAR scores were like zero and two. Oh my gosh. Really? And they, again told my mom, you know, you need to look for all of these kind of developmental delays. However, they never mentioned hearing loss.

[00:20:37] And my mom, she was a teacher and. She would take me to three, I think she said three or four different pediatricians who clapped their hands. And because of that good low- frequency hearing, we hear that. So we would turn and they would say, Hey, you're over-protective go home. She's a late bloomer. She'll catch up.

[00:21:05] And it was right around the age of four when I wasn't talking. Or no one could understand what I was saying. I was talking, but I wasn't understand. And that was the first time that I was tested. By an audiologist at that point in time. And I was fit with my first pair of hearing aids at the age of four.

[00:21:30] And I think my first hearing memory was actually my footsteps in the hall. So I didn't know we were walking down a tile or whatever hallway and hearing. My footsteps for the first time was kind of my hearing moment to hearing memory after that. So yes, a very similar story with that lack of oxygen and having that ski slope.

[00:22:02] Yeah. Yeah. Wow. Mine.wasn’t as pretty as yours. It's about the footsteps

[00:22:11] analogy of the colors, right? That it from the black and white are kind of that static too. Putting technology and, and I'm sure you could say now your color, your world of color is much more vibrant than it was at the age of boys because of technology. Sure. Along with the raindrops and the plastic caps that they put on you, that crinkling noise, you know, that's, that's what I heard the first.

[00:22:39] And then my mother put me on the subway and I don't remember that, but she died. Because I screamed because I had never heard that sound. Right. Um, but you know, that night I was in a Baton rehearsal.

[00:23:00] And, you know, I followed everybody out when the music was playing and the first song was raindrops falling on my head.

[00:23:09] And, uh, when the song came on and everybody started dancing, I just stood there ion ah, looking around like, what is that sound like? What is that music? And, and like, you know, even though I had heard it before, it wasn't. In the richness that I heard it with, the hearing aids, you know, what I'm talking about.

[00:23:31] And, uh, the mothers were crying in the audience because I was just like, you know, so happy and so excited, you know, because it was just so much better, so much richer and, and even the voice of him singing was so much easier to hear and more pleasant. To listen to. So yeah, it's crazy that have almost, we are definitely hearing sisters for sure.

[00:24:10] So kind of moving into, then my next question would be growing up. Did you have any challenges that you felt Really stood out as, as a child at the only one going to through school with having a hearing loss. Well, um, I think, I mean, this is, this is like a two-part question because, you know, we talk about challenges and, you know, I think the challenge for me that was most pertinent in the school years was fear.

[00:24:57] And it wasn't my fear. It was [00:25:00] everybody else's fears, fears about what to do with Karen. Or that kid that just came into your class, who has those funny looking things coming out of her ears, and that she wearing on her body. And because they don't, because nobody tells them what that thing is. It and everybody fears the unknown.

[00:25:25] Right. Um, uh, a lot of kids closed any doors of opportunities for friendship. Towards me. And so that is what made it very difficult for me to make friends now, back in the seventies when I was going to school. And, um, we just, before I was diagnosed, the, the, the, the rule was any kid with any severe to profound hearing has had to go for a school for the deaf, a special [00:26:00] school in Toronto.

[00:26:03] And my mother had found out about an experimental program in the Toronto district school board that was driven by the new director of the deaf, deaf and hard of hearing program and phonic ear. Now phonic ears you may know was one of the first companies, if not the first company to develop an assisted listening device.

[00:26:30] So it's not a hearing like a device, like a hearing aid. It was a device that is worn, um, today with your hearing, aids. And so we wore that in school and, um, What they wanted to see was can they put children with severe to profound hearing loss Into the local schools into a regular classroom. And can they succeed academically if they were the phonic ear system and the teacher wears the transmitter, and then they would have a teacher of the deaf, come into the school three times a week to make sure that always making, um, all was going well in terms of listening and spoken language development and academic.

[00:27:23] Uh, work as well. And so I was one of 50 kids in Toronto that got into this program and it worked so well that now inclusion of children with any degree of hearing loss across Ontario, Canada, um, it became a rule rather than the exception. So, um, with this new person, You know, who has all these devices? It was really difficult for me to make friends in school.

[00:27:52] Um, not only because I looked different, but I sounded different as well. I was so delayed in my [00:28:00] spoken communication skills, um, that. I did manage to have one or two friends during kindergarten to grade four. And that would be nice. And, but in grade three, I slowly began to realize that the kids only paid attention to me.

[00:28:18] If I had something to give to them and something that was cool for them to see like a camera or something, then I moved to the Western part of Canada in Calgary. Alberta. And that was my happiest time socially because the kids out there were so amazing. They were so friendly and the teacher kind of prepped them beforehand that, you know, I'm just a girl who has.

[00:28:48] A little trouble hearing. And she wears this phonic year. She wears hearing aids Those are just extra things, it's fashion, but this is Karen lets welcome her to the class and that made such a difference. Um, and so I was, I made friends really quickly and, you know, we had independence and learn social skills with a gifted teacher.

[00:29:15] I, it was. It was a magical year that showed me and my mom, what could be accomplished when you have a gifted teacher and good kids, good friends in the class. Um, then I returned to Toronto the next year and, um, left my happy place. And there in, in Toronto, the kids were. Not so nice to me. In grade six to grade eight, they bullied me or they excluded me.

[00:29:46] They wrote mean notes for me to read notes that, that, that I was deaf and dumb or what I should do with my life. Um, Jump off a bridge [00:30:00] pictures of me with wires coming out of my ears and I had the Farrah Fawcett hairstyle back then. That was the only thing they got. Right. And, um, but you know, I had to learn to yeah.

[00:30:14] Use these notes in a reverse psychology manner. So I have a challenge. Daring in front of me, which is the fear of the unknown kids don't know what's going on with me. And, but they don't like what they see. And they're afraid that if they make friends with me, they're going to have, uh, they're going to start having trouble with their hearing.

[00:30:36] Right. Um, they just didn't like it. And so what I had to do was take the fear and reverse it. And make it something good, make it something educational or show them that what they were doing to me was not having the intended. Effect. So I would just put all the notes together on a big poster, presented it in a show and tell fashion during my lunch hour with my classmates and teachers and thanked all the kids in the class for loving and caring about me so much that they would write and draw these pictures during school time.

[00:31:18] And. You know, the teacher was so delighted, but then when she saw the, the poster, her face just fell and she said, you know what, Karen? She says, that is really nice of you. Um, she says, you know, why don't you go and show the teacher, uh, show the principal. Ah, the beautiful picture that use that, that you put on your bedroom wall so that you can wake up every morning and know and see how much the kids in your class love you.

[00:31:50] Cause that's how I presented it. You know, you guys love me so much that you do this and. You know, and, um, so that after that day, um, the bullying and exclude, well, the bullying stopped, but the exclusion didn't. And so, you know, high school was much better, but because just because the kids were much nicer, I don't know what it was, but the kids were nicer there.

[00:32:20] And because I had suffered from that meanness. That I got in middle school. I had put up a wall and I excluded myself. From certain people, you know, the popular kids thinking that they would be cruel to me and not with my time, which was a shame because they weren't cruel. They were really nice.

[00:32:48] And they really did try to reach out to me to become friends with me, but I rejected them. I just walked away from them and that was a missed opportunity. And it's such a shame. [00:33:00] And so. I learned lessons. Um, as I grew older and more mature, I became more and more aware of the good, uh, in the world, the good in people.

[00:33:14] And that it's not always about me, how people react to me. It's not always about me and my hearing loss. It's about being it's about them. It's about their experiences. It's about their feelings and. And the importance of me being a good friend in a kind of push into whoever I meet in this world. So that's the biggest challenge I think, is a fear that everybody else has.

[00:33:41] And you just have to learn how to deal with it in a positive and educational manner. Yeah, I am so impressed that at that age, you were able to put that poster together and present it that way.

[00:34:00] That shows a lot of courage and almost this intuition that you had in order to kind of make it positive, positive in a way that, but I don't know that that took a lot in order to kind of come up with that, but I didn't come up with that on my own.

[00:34:21] I came up with that, um, idea because of my parents. And I think this is another thing that I tell parents on my caseload. You know, your children learn how to feel about hearing loss by looking at you. Looking at your eyes, what's in your eyes. When you look at the child with the hearing loss and they learn about themselves by seeing themselves in, in their parents' eyes and my father and my mother.

[00:35:02] We were so proud. They were so confident. They also knew a lot more about reverse psychology and how to handle people much more than I did. So they sat me down. They had these conversations with me and they explained to me that it wasn't all about me. It could have been other things and, you know, um, And how other kids were feeling at the end of the day, when they would go home after spending a day, teasing me and these kids felt badly.

[00:35:37] You know, my mother knew that because their parents would tell my mother that, so it's, it's not easy being a kid these days. And I think by having parents who. Accepted me for who I was and felt really good about what I was able to achieve, [00:36:00] what your child is able to achieve. You teach your children how to respond in difficult situations like that.

[00:36:08] That's how you, that's why you need mentors. That's why you need your parents. That's why you need friends. is to Kind of step back and kind of grow your awareness in the world so that you can learn how to better deal with the challenges that come your way. Yeah, it's such a good point. Cause I, I love to teach, uh, even preschoolers about just that beginning, you know, words and, and, um, talk about their technology and about their hearing loss in a preschool way.

[00:36:46] And it's a foundation that keeps building and if they have the knowledge about their own self and their own hearing loss, and they're more. Likely to share it when others are curious [00:37:00] about what are those things on your ears? So why is that light blinking or why does the teacher need to use the microphone?

[00:37:08] They have the words to do it and they practiced it. But when it comes at you unexpectedly, it's really hard to, to respond without on the fly. So having those practice moments are so important. Yeah. Yeah. And like it, you know, and my worry is that, you know, a lot of kids go through these experiences and they don't share these challenges with their parents.

[00:37:37] They don't talk about it at home, um, for whatever reason. And it's not the

parent's fault. It's just, you know, it's just the way it is. And it's these kids that I worry the

most about. Is, you know, we don't know what's going on with them. And so, um, that's one of the reasons why my mother, uh, was a librarian [00:38:00] and I thought she was a librarian because she was a librarian and that was her job, NO. the assistant to the librarian, because she wanted to keep an eye on what was going on in school.

[00:38:14] And, you know, she smashed down those roadblocks. If they came up from the teacher's side of things, which they did, I learned much later on when I was in university, my mother told me then where all the stuff that she had to do. But, um, you know, it's, it's just, I tell parents, just talk to your kids, talk about, you know, feelings and get them, um, to.

[00:38:45] Together with other kids who are like them. And more importantly, older people who have gone through it, you know, and so that they can share and feel comfortable sharing that stuff because that's usually when the kids started talking. I dunno. Is that what you say? I do. I feel like they need to know that they're not the only one and most of our kids.

[00:39:12] are mainstream now because of early identification and early intervention and technology that is available to them. They end up being the one and only at a school. And so they are in those situations where they're bullied or. People are curious about it, or they don't know how to respond. And I think getting them together with whether it's a mentor that's older than them, that has been through it or others who are around the same age and you bring up those situations with each other, they can talk it out.

[00:39:54] And even if they haven't been in that situation, they might be in that situation in the future. And they'll. Be better equipped to deal with that. So it sounds like a lot of your challenges throughout school really became a strength for you in life. Do you feel, feel that way? I think so. I think so. Um, I never forgot what my parents told me when about this poster.

[00:40:29] The, the notes and the bullying and all of this. Um, you know, I am such a fan when I was growing up. I was such a fan of, um, learning from survivors. Of any situation from disasters to mountain climbing or, um, even Holocaust survivors. And there was one lady, uh, Dr. Edith, Eva Agger. I think that's how her name is pronounced.

[00:41:04] I don't know. But, um, she was, she was just, I saw her, I was reading books that she wrote and I saw her giving a Ted talk on grieving feeling and healing. And she said, and I quote, there's a lot of potential that hides in the dark shadows of life and she's still right. And hearing loss brings. About a lot of dark challenges from time to time.

[00:41:36] Um, it can also be rosy too, but if you look carefully, you can find the potential there in the darkness and you bring the light in there. And that's why I tell the parents, you know, you really need to be, you need to let your kids figure out. Where that potential is. And if they can't find it on their own, then you bring the light in there and you kind of lead them to it.

[00:42:05] And like, like I said, you know, their eyes reflect the strength, the confidence, the joy, and pride in the confidence. And because of this, if they see this, then they will feel that way about their hearing loss and they will bring that light to it, I guess. So out of that, I learned to become a better listener, not to listen, to learn or to listen, to communicate, but to listen in such a way where I can understand the underlying messages, the underlying meaning in the messages that I'm listening to.

[00:42:51] And. And then respond appropriately or probe to find out more about why [00:43:00] that roadblock is there. For example, when I was, I really wanted to be an audiologist. I knew I wanted to be an audiologist since I was 11 years of age. And so it took me a journey, but I. A while to get there. But I got into a university and undergraduate program in communication disorders in, in the states.

[00:43:25] I'm not going to say where. And, um, so when I got in, they, the, the chairperson of the program came to me and she said, you know, Karen, she said, I'm really not comfortable with you being in this program. And I said why? And she said, well, because you need to pass a speech and hearing. hearing tests and you don't.

[00:43:51] And I said, yeah, I know. And I'm like, okay. Um, I said, what, what, [00:44:00] what is the concern? You know? And it was like, in me, fumbling, this anger I've, you know, she's just discriminating against me. Like, why is she stopping me? You know? And I could

have lashed out in anger and told her some. Choice things. But, you know, I had to say calm down, Karen, this is a challenge.

[00:44:25] You've done these challenges before, figure out what the fear is. And her fear as she expressed it to me was very different than what I assumed her fear was, which was, she doesn't want me in the program because I'm deaf. No. She said to me, Karen, I'm afraid that, you know, it takes you four years of undergraduate work in this program to you have to graduate and get your bachelor's degree, but you're not an audiologist yet you have to apply for graduate school and I'm afraid that none of the audiology graduate school programs will accept you.

[00:45:15] Because you have a hearing loss. Oh. And she says, I just don't want you to waste your time. And I said, that makes complete sense. And I could have gotten angry and said, well, I know this audiologist who has hearing, had hearing loss, Mark Ross, and you know, if he could do it, then I could do it. And then blah blah blah,, but no, you know, kind positive.

[00:45:44] Listen to the fear and address it. And I said, well, how about this is where negotiation skills come in? How about if I meet with five different audiology graduate

[00:46:00] school programs, and I ask them, I go and visit them. And I talked to the chair, the, the, the, the head of the program and I stay. Here. I look at my marks, which means you have to let me take these courses just for one semester.

[00:46:15] And I said, let me take the course for one semester and let me get the grades. And then I can talk to the head of the program and see if so, if he will accept me, even though I have a hearing loss, I said, would that work for you? And she says, that would be perfect. Perfect. She says, that's great. She says, I feel so much better.

[00:46:39] We have a plan and. Yes, welcome to the program. And then I thought, Oh my God, I gotta call my mom. my mom knows what to do. I didn't know what to do. Um, but. That's exactly what we did. And I showed up at one in the audiology graduate programs and, and the, the head of the of the undergraduate program wrote him a letter about me.

[00:47:10] And, uh, when I showed up, he introduced himself and he had an interpreter to his side. Um, Hello. My name is Dr. So-and-so and the interpreter was signing. And I was looking at the interpreter lately. I'm like, hello, you know, and looking at him. And I said, ah, hello? I said, thank you so much for taking the time to meet with me.

[00:47:35] And my mother today and his face just dropped and the interpreter just kind of started fading,

[00:47:45] i couldn’t understand sign language that doesn't matter. But I was so impressed with his, um, with his, uh, thoughtfulness to arrange accommodation for me, you know, like [00:48:00] what a nice guy to do that. And he said, He said, you know, you don't need the interpreter. And I said, no, I'm sorry. And he says, you don't know, sign language.

[00:48:09] And I said, no, but I could learn if that, if that was the one that takes to get out,

[00:48:18] he, he, he just, you know, took me in the office and he said, girl, he said, let me see your transcript. I gave him my transcript and he says, y'all have no problems getting in, but you know, there's another program with Dr. Carol Flexer at the university of Akron, Ohio. And I said, yes. I said, that's where I want to go.

[00:48:38] Because my, my audiologist in Toronto graduated from Kent state university and he knows Carol Flexer and he says, she's, she's all that, you know. And he said, Oh, I hate to agree with him on that one. He says, I would love to have you in my program, but he says, she is really cool. You want to go [00:49:00] see her? And I'm like, you know, after that it was, it made me feel so great.

[00:49:09] You know, because even though I kind of had that little nugget of fear today, I was worried about how the audiology program would respond to my application. But I wasn't anymore because this guy said, girl, you keep your grades like this, you’ll get ain't no problem. And you can go anywhere you want. Don't worry about your hearing loss.

[00:49:33] And so it made not only me feel about it, but it made. The, the, the chair of my undergraduate program feels so much better. And by that time she was like, yeah. Oh yeah, you you're yeah, yeah. You're rocking it. And so that's how, that's, what I learned from my hearing loss is just, you know, even though you have a hearing loss, it doesn't mean that you can't listen [00:50:00] and be patient, kind, positive.

[00:50:04] And just respond in an I can manner rather than an I can't. So I guess that's what I learned from there. No, that, that is amazing. And I had a similar experience to an undergrad where I was in the program and the chair of the department. And I think the clinic director. Had called me into their office and said the same thing to me and said, I don't think someone with hearing loss is going to be able to progress through the program and the same kind of fear they had.

[00:50:48] I don't know if you're going to be able to get into grad school. And if anyone walks up to you. And then they saw my marks and my grades and they were like, well, we'll give you, we'll give it a try. Yeah. Yeah. And then after that, they were more willing to work with me. And I think they realized, Oh, someone who has hearing loss brings a whole another perspective to the field of audiology that we didn't realize.

[00:51:23] I guess I shouldn't say existed, but they hadn't had anybody going through this undergraduate program with hearing loss. And so they were, I think, pleasantly surprised that I could bring this other perspective and relate so much differently with an empathy for those who actually were coming through the clinic, which kind of.

[00:51:51] This is my next question for you. Do you feel, I know you wanted to be an audiologist at 11 and you [00:52:00] pursued that you went to graduate school. We both were trained by Dr. Carol Flexer, which is, was a highlight of my graduate. Program I'm still connected to her today, but do you feel like your journey living with hearing loss impacts what you do now?

[00:52:23] Everything that you do now?

[00:52:28] I think so. And, and I, I hesitate to answer this question because it almost sounds, um, uh, Oh, lucky me, you know, I got a hearing loss and I'm so much better than everybody. That is not the way to, that's not what I want to convey. And I think everybody has so much to offer in this field. Um, but you know, [00:53:00] when it comes to having a hearing loss, I think.

[00:53:05] Well, I mean, initially I was worried, um, that I wouldn't be able to do my job, you know, that was my first and foremost concern. And the only part of my job that I was worried that I would have trouble with was. Uh, the speech discrimination testing that we. Right. Um, you know, am I going to hear my client's response as correct or incorrect, or, you know, I was worried about scoring them higher than they deserved.

[00:53:37] Right. Um, but you know, I, I, again, it was a fear and it was, I addressed it with my professor and we learned that. You know, if you know, we can get the client to write down the responses, we can get the client to wear a Comtec  Transmitter at that time. Um, and you know, and it actually turned out to be a brilliant counseling tool.

[00:54:11] Because what I would do is when I was working in Toronto or I was working in an occupational health clinic, but it was open in the evening for kids, um, who were attending speech therapy in a local clinic. And, uh, so they would all come to me in the evening. I came, I came to become. I came to be known as the deaf audiologist,

[00:54:42] right. Talking about anyway. Um, what I would do is because these kids were referred by speech-language pathologist. I thought I'm going to use my tool, which is I want the parents to write down what their kids said. Hmm. So, um, I would have the parent go into the booth with their child and they would sit in the corner and they would hear all the words that would come through the speaker and they would write down what their kids said.

[00:55:16] And so with the parents sitting next to me at the audiometer, and so as I saw them writing out the responses, I was like, And then testing their hearing. It would either be normal or there would be a mild hearing loss due to, or otitis media like a new infection with fluid. Um, then I would say to them, you know, I said, see how they missed this word it's because they have trouble hearing this particular sound.

[00:55:45] Which is right here on that audiogram. And that's why he hears it this way. And that's why they're saying it in a parent would be like, Oh my gosh, that's amazing. And then halfway through the word, um, list I would switch parents. One parent and we're going to the booth and they continue with the written responses to help me score the kid.

[00:56:10] And the parents loved it. They felt involved in the process. So this is an example of me taking a  challenge, a physical challenge that my hearing loss would present in my job and using a tool that I would use to overcome that challenge as a tool to help parents learn. About the impact of hearing loss on their child, understanding what they hear and how they produce the sounds in words.

[00:56:40] And so that was one, um, advantage that I could make out of the hearing loss.

That was out of necessity. And that is thanks to Carol Flexer because she, you know, how she was training us so much about speech acoustics and, you know, pediatric audiology and making predictions about what they might be hearing after playing with them in the waiting room.

[00:57:07] Like she is one of the most brilliant pediatric audiologists I've ever had the opportunity to observe and to learn from. Um, and so, um, so, and then through the auditory-verbal therapy, I think my experience with auditory, verbal therapy and learning and training to provide it has also helped me and writing recommendations to speech-language pathologists.

[00:57:37] Because if you have a child who had better hearing in the left ear, And in right then I would say, make sure you sit on the left side and Oh, when you're having trouble getting that “S” just elongate the “s”, the end of the word, because it makes it more acoustically salient, and just leaning down because you lean a little bit closer to the hearing technology, add a few [00:58:00] more DB and these SLPs are like, Oh, my gosh.

[00:58:03] I asked them and you know, so it got to the point where, you know, the speech-language pathologist were giving me referrals and they were saying, make sure that you ask for the deaf audiologist, know so much about it. And then, I mean, because those are tips that not only did I learn in school, but.

[00:58:28] They helped me when I was learning to grow up, but my hearing loss. And then I guess the other way that my hearing loss helped a lot was me getting a cochlear implant in 2009. Uh, not only did I get a cochlear implant that worked, but it was a lemon. And it didn't work as well as it could have, but despite the fact that it's still like, Oh my gosh, even with an implant that failed, I  still heard so much better than I did with the hearing aids are so much easier.

[00:59:05] It was so much less. effort in listening and that appreciation. Um, and the fact that I had to aggressively advocate for myself, get the programming that I needed done because after one year of wearing that implant, I had about 130 maps. Oh, wow. That's a lot that is a lot. So have like six at the most, in their first year of listening.

[00:59:35] Right. And, uh, so anyway, um, you know, getting that implant had an impact, in my practice because I learned what the process is, what it sounds like I have an implant and, uh, so it, it helped me in my work with older children, teenagers, and adults who get what we call auditory skills training. [01:00:00] And it's an auditory-based training as a type of family-centered auditory-based.

[01:00:05] Or we have rehab individualized for children in older, who are older than sets that, you know, a child who's 96 years old, they would qualify and, you know, AST and, um, uh, the experience that I had getting. The implant activated and hearing sound or speech as it's completely unrecognizable. You, you remember that?

[01:00:39] And it sounded robotic. It sounded monotone and it had clicks and whistles, and I'm just thinking, Oh my, this is awful. This is a mistake. And I'm like, the professional in me had gone. And, um, there's the personal me. Who's sitting [01:01:00] there going through it, but I learned that as I. Gradually as the minutes ticked into hours and hours into days.

[01:01:10] My brain gradually began to adjust to the electrically evoked signals that my implant was providing. And unrecognizable speech was gradually morphing into more

natural sounding speech. And that was easier to hear and understand. And so this is the process that everybody goes through, um, to, to varying degrees.

[01:01:33] And I called this adoptation period, the auditory brain change process, or the ABC.process. And this process can last some, three to six months, and this is when the patients have the most trouble. And it's very, and you have to walk them through that process and you have to say, Oh, that's a great error. Yes, that's normal.

[01:01:54] And you can say it with confidence. So I think it gives me more confidence as a clinician as to being able to respond to their clients and what they hear as, okay. This is okay. Oh, this is not okay. We need to get this addressed. Um, I have much more confidence, so I think that's what my hearing loss has brought into my practices.

[01:02:18] The confidence in knowing that. I kind of do know what I'm doing and you've lived it too. So that's yeah. Yes. Now I'm so glad you brought up yet. The auditory, what is it? Auditory skills, skills training, or AST yeah. And it is so critical for, our, Teens who are getting cochlear implants later and adults who are getting cochlear implants later, that they need to have this period of time for training and coaching, or they're not going to maybe accept this new signal coming into their brain.

[01:03:09] Yeah. Because it is a lot different when you first are activated and trying to get used to a whole new world of sound that I had the same reaction you did. Well, wait, did I do the right thing? Because this does not sound good at all. And now with training and coaching, When I put my implant on it sounds what I feel like normal again.

[01:03:40] Yeah. And, and that's, that's the point that, I mean, a lot of people, there's a lot of auditory simulations of what the implant would sound like on, on the internet drives me crazy because yeah, it does sound something. It sounds something like that in the [01:04:00] initial stages, but that's just the process that the brain is going.

[01:04:03] Wow. W w w what is this electrically book signal what's going on here? Like panic for your own alarm alarm, you know? Woo hoo. That's why it sounds so bad at first, it's just the brain freaking out. And then when you tell the brain, I tell my clients, you know, just talk to your brain, just tell them it's okay.

[01:04:27] These are good things to hear. It's going to get better. The light is at the end of the tunnel. It's such a good job brain. And then the brain will change the signal. You're not getting used to a bad signal that you hear on the internet. The brain is morphing it into something that sounds beautiful and natural.

[01:04:50] I mean, yes. Okay. There are some limitations to some degree, but gosh, it sounds pretty dang good. And we have such a [01:05:00] similar hearing journey with everything that I was afraid at first, because I'm obviously was born with hearing loss and get an implant. A year ago, what my brain would do with that. And it is quite amazing how it

adjusts with the training and the appropriate mapping and the perseverance to keep going forward and wearing it all the time.

[01:05:27] Yeah. Yeah. And I find it really rewarding because, um, you know, the first three months are the most difficult for so many people and in order for them to continue wearing a device, They have to see some benefit to it. And in that ABC process, they don't see any benefit at all. And, but they know they have to keep wearing it and they rely on, um, computer assisted, um, [01:06:00] auditory training program.

[01:06:01] They are not bad. They are wonderful, but. Sometimes it's difficult for the user to get to the right level in these programs because it's so generic and they really want to talk about sound quality. This sounds awful, is it right? You know, and they want to make sure they're using their devices. Right. And they want to have success.

[01:06:26] And that is what, um, Your clinician did. May I say her name? Dr. Denise Wray? What she did. She sat you up in her. You're such and worth her. She created, um, a successful listening experience for you because she knew. How to create it. She knew just what to do, and that makes you feel so much better and so much more positive.

[01:06:57] And, and it helps you to [01:07:00] comply better with the implant use. Because honestly, if I did not have that therapy, if I did not have one Warren Estabooks with me in Germany? When I got activated, I would have gone back to the hotel room. Locked myself up in the room, taking the thing off. I couldn't do that because he was there.

[01:07:25] And when I was able to work with him and see, and hear the change that my brain was going to speech down slowly, slowly, better and better and better, the more success I was having, I was like, okay, I'm going to give this thing a shot, you know? Good job, Warren. You wanted to say something there? No, I just, I agree.

[01:07:51] A hundred percent. It's like we needed those success coaches in our life who knew that auditory development as [01:08:00] well, to see the little steps that you were

taking, even though as a person you were like, I don't think I'm getting any better with this. And. Denise Dr. Denise Wray is able to sit back and say, look from last week to this week, you have improved this much.

[01:08:21] And so the little successes along the way motivated me to want to get better. Yeah, exactly. And that's what it is. Plus we helped the audiologist out with the programming case. Um, cause we know the numbers change speech acoustics too, but it's all about a supportive network and the therapy looks so much like AVT.

[01:08:48] It's supposed to be fun. It's supposed to be conversational and you've got your spouse or your listening partner involved and they learn how to create those positive listening

[01:09:00] experiences too. So that's why I'm really excited about auditory skills training and it's something that we need to do more because did you know that 30% of implant recipients are children?

[01:09:18] 70% are adults, but they are not getting any therapy or very little. And so we need to change that. I think so, too. So, but before we log off and I, I wanted. To also have you just give a little plug about Sound Intuition, because I know I had the pleasure to come up to Canada and be part of your amazing conferences that you are able to share with Canada and the US and the world.

[01:09:57] But can you just give us a little plug about Sound Intuition and I can definitely link everything to the show notes today, too. Yeah, you're very sweet. Thank you. I'd be happy to do that. Uh, Sound Intuition is a company that provides, um, we're supposed to be providing online learning experiences and we've been able to do that.

[01:10:20] Um, Particularly in the last year because of the pandemic. Right. But for many, many years, Sound Intuition has been having conferences in Toronto, Canada, uh, day-long conferences on anything to do with childhood hearing loss and therapy, um, to help them to become the very best listeners and talkers and. Uh, academic scholars and school.

[01:10:48] And, um, so we have a conference in the spring and a conference in the fall. They, I usually, um, approved at that they're all approved

[01:11:00] by for AG bell CEUs. And, um, Uh, we also have, um, a lot of training programs face-to-face or online training program to the very intense in auditory-verbal therapy and, and auditory skills training.

[01:11:20] And so Sound Intuition has a certification program for clinicians. We want to learn how to provide auditory skills training. And so we provide level one level, two-level three, uh, certification programs and training programs for that. And, uh, it's been life-altering. It's it's been so fantastic. We've had, um, Uh, trainers or professionals from Canada, the United States, Spain, Portugal, and Denmark.

[01:11:57] And, uh, recently [01:12:00] in the Western part of Canada where they work with the indigenous population. Um, very excited about that as well. So I'm so proud of these clinicians who are going through the Training process and, um, getting certified and becoming one at some of the most talented clinicians I've ever seen in the world.

[01:12:22] So that's what we do. And, uh, if you want to learn more about Sound Intuition, you can go to www.soundintuition.com and sign up to be on the mailing list. And we also have a page on Facebook as well. So reach out to us if you want to learn more about what, what it is that we do, and I'm all about showing you what we can do.

[01:12:49] Well, we would definitely put the link in the show notes today. So any listener can just click on and find out more about Sound Intuition as well. [01:13:00] But Karen, I just want to say thank you so much for one being my HEAR-O and you have been my HEAR-O for so long in my life. And, and I am so blessed that we can stay connected after all of these years, because it's been.

[01:13:18] I spend a lot of years actually, if we kind of count them up. So, but we're not going to share that today because we're just getting younger, not older, but I really

appreciate you coming on to the podcast today. It has been such an amazing Conversation. And how many, uh, how, uh, paths really are so similar.

[01:13:44] I know we've talked about it before, but every time we talk about it, I think we find out something more similar about our lives. That's true. But yeah. So thank you so much for being part of this tonight

[01:14:00] and thank you so much for having me. As part of your evening and, and podcast, it was such a pleasure.

[01:14:08] So thank you so much for having me. I was part of your podcast today. I, I appreciate it. And thank you listeners for listening. Don't forget to subscribe. So you don't miss an episode. This has been a production of the 3C digital media network.

Episode 15: EmpowEAR Audiology - Dr. Ryan McCreary

[00:00:00] Welcome to episode 15 of EmpowEAR audiology with Dr. Carrie Spangler. 

[00:00:16] Welcome to the empower your ideology 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. 

[00:00:45] Thank you for listening, and I hope you will subscribe, invite others. Some listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation on the empowerEAR Facebook group. transcripts for each episode can be found at. Www three, the number 3Cdigitalmedianetwork.com under the empower your podcast tab. 

[00:01:18] Now let's get started with today's episode today. I have a special guest, Dr. Ryan McCreary. He is the director of research at Boys Town National research task hospital where he’s the director of the audibility perception and cognition lab, and director of the Center for Audiology. Dr. McCreary completed his PhD in 2011 at the University of Nebraska where he researched bottom-up and top-down processing of auditory information in children. 

[00:01:51] His lab's current research is focused on various aspects of hearing, hearing amplification, language processing, and language development. Dr. McCreary’s research has contributed to our understanding of the importance of auditory experiences on language and sensory development. Findings from Dr. McCreary's research is directly related to clinical outcomes and have led to optimize clinical protocols for fitting hearing aid and children with hearing loss. 

[00:02:21] Dr. McCreary has authored 56 peer-reviewed publications and has numerous research collaborations. He has a regular speaker at scientific and clinical meetings and is an active member of the American speech-language-hearing association. Because of his significant scientific and professional contributions. 

[00:02:41] Dr. McCreary was recognized in 2020 with a prestigious ASHA fellowship award. Congratulations! Ryan is going to be presenting at the American Academy of audiology's. Marion Downs, lecturer and pediatric audiology on April 15th, 2021, virtually. And, um, thank you Ryan. I am for being on the podcast today. 

[00:03:07] What a, uh, incredible resume that you have, and I'm so excited to have you on this podcast today. Oh, it's so great to be here. Um, I think I told you that I'm like a huge fan of your podcast, so it's really fun to be on here and to get to talk to you. Cause I always enjoy talking with you. Well, I always enjoy talking with you too. 

[00:03:27] And I was trying to remember when we first met. Yeah. Thinking about this and um, I think it was an educational audiology association conference. Um, and it might've

been. Even when, uh, the educational audiology association had their summer conference in conjunction with the ASHA schools conference. Oh, I think you're right. 

[00:03:48] It was, that was a lot of years ago. Um, but yeah, I, and then you and I have stayed in contact at, at EAA and ASHA meetings and, and things since then. So it's, and it's always good to see you. It's always good to see you. And I hope someday we'll be able to see each other in person again. I know won't, that'd be awesome when we can have actual meetings again, uh, even the most introverted members of our. 

[00:04:13] Science team here are looking forward to going to meetings coming up. So, and I feel the same way. Yeah. It really brings you can relate to people a lot better when we can actually see them. So I always like to ask my podcast, guests, how they actually got started in the field of audiology. I feel like everyone has such a different journey of how they got here. 

[00:04:39] Yeah, mine's kind of weird. It's a little, uh, indirect, but I, uh, when I was in high school, my high school had a program called community resource training and it was basically a way for students in my high school when they were juniors or seniors to identify. A field that they wanted to work in. Um, and the way that my schedule worked out, I had the CRT class at the very last part of the day. 

[00:05:07] And what that meant was that by the time I went to class the first week, when we got to pick what our assignments were. Um, all of the other options that I had in my small town were already taken. And so the teacher of the class said, well, now you have to take a test to figure out what profession that you're going to end up in. 

[00:05:26] And so I took this vocational aptitude test and, you know, it basically listed off all these things. That would be interesting based on what my interests were and what I wanted to do. Uh, and audiology and speech language pathology was like one of the higher. Rated things along with some really strange ones that, that I won't mention. 

[00:05:46] But, um, so I got assigned to work with an audiologist and a speech language pathologist. He was dually certified and he was a school based, um, SLP and audiologist. And he worked with kids in the afternoons when I had class, um, that had hearing loss and it was the first exposure that I had to, uh, to. Seeing someone work with kids who are deaf and hard of hearing and see what a huge difference it could make. 

[00:06:13] And I was really into it. Like at first I thought, I don't know, I'm not really going to be interested in this. And it was fascinating. And I've been fascinated with helping people who are deaf and hard of hearing ever since, because I just feel like it's something that you can do that makes such a huge difference. 

[00:06:30] So I went to the University of Northern Colorado as an undergrad, thinking that I would. Um, be dually certified and be a speech-language pathologist and be an audiologist. And then I met Dr. Steve Ackley, who was an audiologist, uh, in a faculty member there. And, uh, he really turned me on to audiology, but I've always had that speech-language pathology sort of undercurrent in my, uh, in my life.

[00:06:55] And it's funny because now that I'm doing research, it's, you know, it's really, I, as you mentioned, I'm doing research, that's sort of right at the intersection between audiology and speech-language pathology. And I love it. Yeah. I hear a lot of people who audiology who work with kids. So they had a hard time deciding whether they wanted to go into audiology speech because they wanted to work with kids with hearing loss. 

[00:07:19] And there was a lot of intersection and I think that's amazing, but your high school have gotten that experience. And it just makes me think sometimes as an educational audiologists, we go in and do a presentation about what we do. And you never know who you might impact. Right. Absolutely. Yeah. I mean, it's one of those things where, when we talk about trying to get people interested in the field, that's always one of the first things that obviously comes to my mind because of my personal experience. 

[00:07:45] But I do think it's a really pivotal time before you go to college and you haven't really decided what you want to do. Um, can you know, that, that, that speech-language pathologists and audiologists that I work with, uh, he was really, um, You know, dedicated to what he was doing and really enjoyed it. Um, and, uh, you know, I don't know that he even knows that he has had that impact on my career because I don't, I don't know. 

[00:08:12] I haven't kept in touch with them. So I have no idea. Well, maybe he'll listen to the podcast and then he'll find out. Yeah, John Calper. If you're listening to this podcast, I hope you know that you're responsible for all of this. So that's awesome. So you went at Northern Colorado, for undergrad. And then where did you go for your graduate work? 

[00:08:36] Yeah. So I finished my undergrad at Northern Colorado and I loved Northern Colorado, but, um, I was applying for both PhD and masters in audiology programs. And, um, I made a decision that I was just going to go and get my clinical master's degree, uh, and work for a little while rather than going straight into a PhD program. 

[00:08:55] So when it came down to it, um, I decided that I was going to go to the University of Nebraska at Lincoln. I had some family in this area. Um, And so I thought it'd be really great to get out of Colorado and go to Nebraska for a little while. And then, um, so I did my masters, yeah. Audiology at the University of Nebraska Lincoln. 

[00:09:14] And then in my last semester of on-campus at the University of Nebraska, I got a clinical placement at Boystown, which was a real competitive, um, difficult place to get a placement. But I was interested in Pediatrics and BoysTown obviously well known for pediatrics. And so it's funny because the, um, audiologist who is now our director of the clinic in the audiology program was the woman who hired me, um, as a student. 

[00:09:42] So, um, it's fun to, to joke around with her about the fact that, um, she ended up hiring her future boss. And, um, it, I learned so much, uh, during that. A process that I then applied to do my clinical fellowship at Boystown. Um, and I worked as a clinical audiologist, um, in Omaha and then moved to Seattle for a few years and then came back to Omaha and, uh, in 2004. 

[00:10:06] And I'd been at Boystown since 2004, so. Wow. Yeah. Yeah. That's, that's awesome though. You've made a big impact and. I know you said you did your masters and your PhD, but audiology as a whole needs, more researchers and PhD, um, experience or, you know, uh, individuals out there. So what is your experience and what advice would you have for maybe an audiologist who is out there who might be thinking about getting that PhD? 

[00:10:40] So my advice would be to work for a little while. Um, if you, if you can, the hard part about working for a while and your professors will always advise you not to do this, um, is that you have like a nice job and you're, you're earning a living and then you go back to school and then you're not earning a living as much anymore. 

[00:10:59] Um, and so that's really challenging, but working in the clinic before I went back, uh, for my PhD was really. Really good for me, because I think the research questions that I have and the, the areas that I'm interested in are really heavily influenced by my clinical experiences, working as an audiologist, working with families. 

[00:11:20] And I think it just gave me a lot of perspective on. What families and, and people who are deaf and hard of hearing think are important outcomes. And I think that was really shaped by those experiences. And I don't think that it would be the same if I hadn't had that clinical experience. So I didn't go back for my PhD until I was, I had been practicing for like seven years. 

[00:11:42] Um, and it was hard. Um, but my advice would be if you want to do research and that's what you're really passionate about, then the PhD is the right. Degree in the right way to go because it's, uh, you know, it, it gives you a whole different kind of training. Uh, that a clinic that my clinical background didn't give me so training in statistics and how 

to design studies. 

[00:12:04] And, um, it's, it's a really complementary skillset and, and I love what I do right now, but there are times that I miss seeing patients in the clinic. Yeah. The experiential learning part was very beneficial to your PhD. And so another question, kind of a side note, would you advise. Audiologist who had already had the AuD to go get their PhD in audiology or another related field. 

[00:12:34] That's a great question. So my own PhD is in this weird sort of multidisciplinary category that the university of Nebraska offered called human sciences. So it allowed me to focus on, um, Some aspects of audiology. So I did take some coursework in the audiology program, but it also opened up the opportunity for me to take coursework in experimental psychology, in educational psychology development, um, biology, engineering. 

[00:13:01] So. I was able to really get a sort of cross-disciplinary PhD experience where the research questions that I have were not something that I was going to learn about in my and taking more audiology classes at that point. And so, um, I, I wouldn't recommend that anyone limit themselves to an audiology PhD, if they're already an audiologist to think about other fields, um, where you might be able to. 

[00:13:30] Apply neuroscience is another area that I think right now in particular, um, would be a great crossover for a person with a background in audiology because, um, there are just so few people doing neuroscience research, um, in the auditory system. I mean, there's

some great people in our field who are doing, doing that work, but compared to other fields where, um, like the visual system where there's. 

[00:13:54] You know, uh, entire conferences that are bigger than many of our own conferences that are on visual research. We just don't have the same level of cross-pollination and the auditory system. And so you find that your expertise is really valued by other scientists because there's just not as many of us in the auditory field. 

[00:14:12] Wow. So I think, yeah, that's great advice for someone that might be pursuing the PhD to kind of think about what are they interested, invested in and kind of look at a PhD in that area to, uh, to cross-pollinate basically, right. Know, knowledge. Um, so one of the things that I really admire about you and your research is the fact that I think you have that clinical experiential learning. 

[00:14:39] Piece that you have, and you bring that into your research world, but everyday kind of application for people like me who are out there on the field, like we can take it research and, and know what it is, um, and apply it. So I think. You know, that's such a strength of yours to be able to effectively communicate all of that and keep everybody engaged in that. 

[00:15:01] But can you tell us a little bit more about the current research that you are doing that focuses on pediatrics and advancing that field? Yeah, well, first of all, thank you. That's, that's the biggest compliment I feel like I can get is when people feel like the work that we do is useful because, um, I didn't become a researcher, uh, for any other reason than wanting to try to help, uh, clinicians and help children and families. 

[00:15:28] And, and being able to do that with your work is extremely important to me. And, um, there've been some really interesting studies that I've been a part of that weren't. As fulfilling on the clinical side. And whenever that happens to me, I always find myself trying to go back and find something that I can work on that that does have that clinical link. 

[00:15:49] So the big projects that we're working on right now, we have. We have several that were, that were involved in. So I would say the first one is an extension of a project that we've been working on for the last seven years. Um, and the basis of that is to try to look, to see, you know, we take. Uh, children with hearing aids and we do an audiogram and we fit those hearing aids based on the audiogram. 

[00:16:13] But is there a way that we can customize that a little bit more rather than just the audiogram? Because as you know, and, uh, as many of your listeners probably know, uh, you can have children or adults who have the same audiogram, but have very different experiences with their hearing aids. And to me, that's always been fascinating, um, that, and I think for some people it's frustrating because. 

[00:16:37] Uh, you know, it would be great if the ear were like the eye and you just put glasses on and everything were kind of resolved. But to me, it's sort of an interesting, um, problem. And so we're trying to figure out, are there ways that we can customize amplification to better, you know, uh, meet the needs of the individual listener rather than using the same audiogram and the same prescription for all listeners?

[00:17:00] So we have a big NIH grant that's starting its third year, this summer. Um, and that is our goal is to try to figure out what are the individual factors that are gonna. Predict success with hearing aids for kids. And, uh, and that's just, it's such an exciting project. And then the other big one that we have going on right now is called fast track, which is an acronym, uh, and that stands for finding appropriate solutions for treating reduced audibility in kids. 

[00:17:28] Wow. A mouthful. Um, And that is a really cool collaboration with the University of Iowa, Boston children's hospital. Um, Arkansas children's hospital in Washington University in St. Louis, um, where we are, uh, essentially trying to develop some new clinical tools that would be useful for audiologists in the diagnosis and treatment for kids with mild bilateral hearing loss. 

[00:17:56] We know that children with mild bilateral hearing loss often. Experience poor outcomes than we would expect, even though we described their hearing loss as being mild. We know that it's not, and we've known that for decades. Um, but we still don't have clinical tools that are really tailored for the specific challenges that kids with mild bilateral hearing loss face. 

[00:18:18] And so we're developing a sort of suite of tests that an audiologist could do in a clinical setting. That would help to identify which kids with mild hearing loss are going to need more support and intervention, which ones are going to, um, be able to do well, um, with, with different kinds of support. So it's an exciting project and that one just started, um, last summer. 

[00:18:39] And so we've got several years left. Um, on that one. And we're in that early development phase where we're still developing the software and things for those tools. Um, and then what we'll do is test them in the laboratory this year. And the next year we are, those tools will get deployed to pediatric audiology clinics for them, uh, for audiologists to use and tell us what works and what doesn't work. 

[00:19:00] So it's cool because it's, it's a collaboration that starts with the lab, and then it's going to be out in the clinic. Um, and I, I really enjoy those kinds of projects because you're taking something that's very scientific, and then you're going to put it out. And the audiologists and the clinicians who are going to work with it are going to tell you everything that's wrong with it. 

[00:19:18] And that's what we want, because that's how it makes things better. Yeah. And I, I'm glad you're doing that because as an educational audiologist, I feel like a mild bilateral kids end up being our hardest kids to, to work with and for reasons. And maybe, and I'm sure you already know this, but this is my just experiences one sometimes if the parents, um, because they see their kids in a home environment and they seem to be doing fine and they don't wear their hearing aids at home because they don't seem to be needing them at home. 

[00:19:54] And they're missing out on a lot of incidental learning. And then again at school, um, they, they get. Enough to look like they're doing okay. But then there are these gaps that show up later on. People are attributing it to other things. Honestly, I think it's the lack of intervention and consistent intervention that happened early on. 

[00:20:23] I completely agree with you. And I want to know who the person is that decided to call that category of hearing loss mild, because they have done a, such a huge disservice, um, because there's nothing mild about it. Um, you know, you described something as mild and people sort of think it's innocuous or not a problem. 

[00:20:42] And we know that children with mild hearing loss, um, are at risk for all kinds of language delays. And in some of our recent research studies, We're finding that kids with moderate hearing loss are actually doing better than the kids with mild hearing loss, because they're getting more consistent intervention. 

[00:20:58] And that finding that we had in a collaboration that I had with, um, Dr. Beth Walker from the University of Iowa, who was recently on your podcast, one of my favorite episodes, but, um, but. What we found was that these kids with mild hearing loss were doing more poorly than the kids with moderate degrees of hearing loss. 

[00:21:18] And when we looked at why it was because they weren't getting the same intervention, the kids weren't wearing their hearing aids as much. And I think to some degree, they're not wearing their hearing needs as much because they don't need to. Right. They can hear in certain situations without their amplification. 

[00:21:33] And so the thought process is if they can get by without it, then we should let them. But the problem, as you mentioned already, Is that they're missing out on all of these wonderful opportunities for incidental learning. Um, we know that they need that auditory stimulation and that auditory experience, um, to sort of develop the listening skills that they're gonna need to listen in classrooms and in social situations of restaurants and things as they get older. 

[00:22:00] And so one of the things that we're trying to do. In the fast track study, but also overall just in our clinics and in the work that we do with families is really talking to families about audibility and trying to get away from that terminology of mild hearing loss, because it just doesn't convey the significance of it. 

[00:22:19] And what we're finding when we talk to parents about audibility is that, um, parents are shocked. At the fact that you can have a child who has a mild hearing loss and in an average, conversational listening situation in, in a quiet environment, they're missing half of average speech. And no one thinks that that's mild when you explain it to them that way they think, wow, that's a pretty significant problem. 

[00:22:45] And it's a real, um, when you start to. Use that as a tool for the parents instead of the audiogram, which is not very relevant to parents or really anybody other than audiologists, then you know, you start to talk about how it affects] communication and the light bulb goes on and they say, Oh, you know, this makes sense. 

[00:23:03] And this is why when he's in the other room, I can't, you know, he doesn't respond. It's not that he's being obstinate. It's that he can't hear me. And it's a really useful

tool for parents. And I think. If we can start to change our terminology and our approach around that, we might have an impact. Um, I don't want to say that we're going to solve the problem because it's complex and there's a lot of things there, but, um, but I do think the way that we described mild hearing loss from the get-go just really works against what we're trying to do. 

[00:23:34] And then. We try to play catch up with these kids when they get to school age, and they don't have the skills that they need to function in a classroom. And I'm sure you see that in the work that you do. Oh yeah. And I think the other population that needs to be educated more is even I, um, otolaryngologists. 

[00:23:51] Well, they, I still see reports that, Oh, well, just mild. So if you want to do something about it, You can, but if you hear that from a ENT w I, as a parent, I would probably want to be more the glass half full. I don't want to put my kid through this if I don't have to. And so it becomes a challenge from an audiology perspective to educate the parents differently. 

[00:24:23] Yeah. And when, when we talk to our otolaryngologists, we hear things like this all the time, you know, and again, I think you have to remember that the, the ENT is that you work with only have about two hours more education in audiology than the parents that you're working with because ENT is spend most of their career learning about surgery. 

[00:24:44] And I helped to train the ENT residents in audiology from the University of Nebraska medical center. And I can tell you, they don't get that much. Time on the audiogram or on the impact of hearing loss, you know, they have to sort of learn it through experience. And, uh, and so I think we have to continue to educate them. 

[00:25:04] On those things as our research evolves and as we get better tools so that they can be our partners in helping to counsel because they carry a lot of weight with families and their opinions are valued by families and they should be, they're very important part of our team, but it's, it's always hard when we're at cross purposes and they're saying, this is no big deal. 

[00:25:25] And we're saying it's totally a big deal. Um, and we have had a couple cases where. In our clinic that have become conversation points with our ENT, because we have kids, there was sort of a mild hearing loss that was presumed to be like a residual conductive problem, not a big deal. And the child went on and got older and older and you know, that conductive loss never really went away. 

[00:25:50] And it was actually not conductive. It was sensorineural, but it was mild. And. The child had had tubes. And so there was this, all these contributing things that sort of led to that uncertainty. And so just trying to get everyone on the team, the parents, the physicians, the audiologists, to think about the impact that's going to, I think that's our big challenge. 

[00:26:09] Yeah, I agree. So getting back to the hearing aids and study and with that, are there different. Components that you feel are unnecessary and choosing hearing aids and appropriate technology for children. Yeah, I think. That the most important thing. And this is

going to sound weird is connectivity. Um, I think a lot of audiologists think about the technology level first because that's sort of what we've been marketed to think about. 

[00:26:43] And indoctrinated to think about is the technology levels of hearing aids, but there's still no compelling evidence that I'm aware of. And I would love to read it if anyone has it, please send it to me that these technology levels that the hearing aid manufacturers use are. Sort of helpful in any way, shape or form. 

[00:27:00] We know that the higher-end technology is more automatic and that can be convenient and it can be very useful, but it's not going to improve benefit for an infant, for example. So we really have to think about. Um, the function of the device. And so my biggest priority for kids is finding something that is going to work with all of the technologies that they need, uh, throughout their day and approaching it from that standpoint rather than, you know, how does it look or, you know, uh, I'm very practical. 

[00:27:34] So it's like, does the, what's the battery life? Is it durable, you know, is it going to connect to their remote microphone system in the school with seamlessly? Is it going to allow them to talk with their friends? You know, can we make it work with their gaming system at home? If that's something that they want. 

[00:27:51] So I like in the audiologist, when I was seeing patients that was always asking those questions about, you know, what, how do we make this work with. Whatever. I mean, cause if you want to get a teenager to wear their hearing aid, it's very hard. But if you can make it work with their X-Box, that that will help. 

[00:28:11] Right. Well, it's streaming to YouTube all the time. Exactlyk Yeah. Yeah. I mean, I'm sure you see it all the time in what you do where, uh, you know you, but if you can make it functional, you know, I think that's the key. I mean, I had a parent come to me one time and say, yeah, he will wear his, you know, his. Um, air pod, the Apple earphones all the time. 

[00:28:34] And they're, those are big and noticeable. And, and I said, yeah, but people think they're cool and we have to figure out a way to make the hearing aids. Cool. And I'm not cool. So I shouldn't be the person to try to figure out what that is, but they should find someone really cool and ask them, how do we make hearing aids? 

[00:28:50] Cool. Because I think that would be, um, you know, That would be a big, a big help there for, for getting people to use their hearing aids, even adults. Right. Well, I think the newer, the Bluetooth capabilities are certainly helping a little bit with the teen population. I've had a couple of teens recently who I I'm really into streaming. 

[00:29:16] I'm like my teachers are based out like, you know, saying nodding their head back and forth. They might be listening to music and not to you. Yeah. And you know, I was probably. If I had had that capability when I was a teenager, absolutely. Would have taken advantage of that as well. So, um, you know, but that, uh, that's, that's how I think about it, because again, my goal. 

[00:29:42] Is what can we get that this child will be able to use? That's going to help them. It's going to give them the best outcome. And that's, that's really what it boils down to. And

if it's, if it helps them to stream their favorite music or, you know, something that they really enjoy to me, that's the most important thing. 

[00:29:58] Yeah. So for parents who happened to be listening, how would you, what advice would you give them to determine if the hearing aids are functioning as expected? I mean, either different red flags that they should be looking at or. Yeah, I think that's a really, I think that's a really great question. And, um, you know, I, I'm always wanting to be very careful about giving other parents advice. 

[00:30:24] I have kids, um, and you know, there, there's nothing worse than unsolicited advice from other parents. Right. But I think. Uh, to me, the things that I would look for, um, would be, first of all, I always tell parents to trust your gut. If something doesn't seem right with the way the child's responding, if something seems like it's changed, even if the child says, Hey, everything's fine. 

[00:30:49] Um, you know, look into it, check into it, do a listening check. Um, even for an older child where you wouldn't normally as a parent be doing a listening check because you, you know, you're relying on the child to sort of manage the amplification. I think that's really important, uh, because of the number of times that we've had parents. 

[00:31:08] Come in and say, I don't think this is working right. It doesn't sound right. And they're absolutely right. We put it on our test box and it's, there's something really subtle wrong with it. Um, I would just tell parents to trust their intuition and, uh, about that and not to write it off as a bad listening day or, you know, I think it's easy to do that. 

[00:31:27] Um, but I think parents know how their children are. And they're the best judge of what that level of engagement is. And if there's a change there, then we really need to look into why that is. And, um, fortunately, a lot of the parents that we work with are excellent at that. They, you know, they bring the hearing aids in right away if there's a problem and that's, that's excellent. 

[00:31:48] And then the other thing I think is just, um, I just encouraged the parents that we work with to have conversations with their kids about. They're, you know, kind of their hearing story so that they can appreciate their identity and the good things that, and the fun things that came along with raising a child that you know, was deaf or hard of hearing so that they can kind of learn to appreciate that. 

[00:32:12] I mean, we all hear those stories about us from our childhood that sort of make us laugh or make us appreciate it. You know, even if we don't remember them, Uh, you know, I just try to encourage, um, a lot of the parents that we work with to have those open conversations with, with their children about it, because I don't know how much, um, you know, that happens. 

[00:32:33] And I just think. You know some of the best parent examples that I've seen in my work are parents that have those conversations with their kids and, and they're very engaged. And, and I think it just helps with people's confidence and their identity. And knowing that, you know, there are a lot of positive things and fun things that come along

with, um, with having a hearing loss and, um, you know, it it's, it, it can be really challenging and, and parents can have a lot of complicated feelings around that, but. 

[00:33:01] But, um, it, you know, it's just such a, uh, we had, uh, a child who we follow in our clinic who became an Eagle Scout last year. And it was such a cool, I mean, it's cool. Anytime, anyone does enough to become an Eagle scout, but it really, we were really proud and it was just cool to see the family, you know, see this huge accomplishment because, um, this was a child who had a severe to profound hearing loss. 

[00:33:26] And, um, you know, and I think in the beginning, the parents were. We're had no experience whatsoever. And then, you know, to have it sort of, to see that was just so awesome. And it's, it's, it's really cool to when, when you can follow a child from the time they're an infant until they become an Eagle scout. 

[00:33:42] That's that's pretty neat. Yeah. No, I think your comment about having those open conversation is well-taken, because then. The child or the, you know, doesn't feel like this is something I have to hide. This is something that I can talk about. I can share about when the family sets an example that way too. 

[00:34:02] So I think that's powerful. Yeah. And parents enjoy it too. I mean, I think, I think sometimes parents, there's a little bit of a taboo for them to talk about it and, you know, sometimes just, you know, making it lighthearted and fun, um, can really, can really help. You know, it can help to see that. And, and, um, that's something that a friend of mine who is hard of hearing told me a long time ago that his parents did, and I thought that's such a great, you know, thing. 

[00:34:28] Um, and so that's, that's just something that we've, that we've adopted and, and talking with our families, because, and that's probably one of the funniest parts of my job is just getting to know, you know, the families and the kids and, and that's. You know, I did see adult patients, uh, when I was an audiologist and I enjoyed working with adults, but working with kids and families is just a lot more rewarding. 

[00:34:51] You get to see the kids grow up and, um, And, uh, you, you really feel like you're helping them like all the whole, the whole time, you know, and you see and become an Eagle Scout, right? Yeah. Well, I don't think that anything had anything to do with, with the audiologists, but, um, you know, because the amount of work that's involved with that is, is just unbelievable, but it is cool to see, you know, you, you get to see that compressed timeline that you don't often get to see with. 

[00:35:19] What's adult patients that I think is just very rewarding. Yeah, no, I agree. So one other question that I had that kind of relates to the hearing aids and parents and functioning would be, what are some questions that you ask if a child is not making progress with them hearing aids? Yeah, that's a really, really good question because. 

[00:35:42] It's really easy in retrospect, to look back and say, why didn't we do something sooner? Um, and so one of the things that we talked to audiologists about is developing consistent functional outcome measures, it's questionnaires or speech recognition or

whatever. And I know the functional listening assessments that educational audiologists do, all of those things, um, should improve over time. 

[00:36:09] Up until kids are 12 or 13 years old. So if you have a child who. Is not making progress, even if they're sort of staying at the same level on some of those things. Um, don't ignore that. That's why we know kind of now that we've had some experience, what the sort of trajectory looks like when we fit a hearing aid and the child wears their hearing aid. 

[00:36:32] Um, and that is that they should continue to progress in terms of their auditory development. Um, and we should continue to see improvements on those questionnaires and on those. Um, those speech recognition measures and, and we see that until kids are in middle school and some children are on different growth trajectories than other kids. 

[00:36:53] But the point is, if you have a child who sort of plateaued, it doesn't seem to be making progress. You don't want to wait for them to fall further behind. So that it's really noticeable. So I just try to. It never hurts to ask the question. Um, and, and so as 

audiologists, I think looking at, looking at the big picture, talking with the parents, talking with other professionals, it's so important because I think. 

[00:37:17] Kids are complicated and they have a lot of really interesting things going on in their development and audiologists. We only see one little piece of it. Right. But if we open, if we expand how we think about it and talk with other professionals and talk with the parents, I think sometimes we can sometimes as audiologists, we write it off as you know, Oh, they were just having a bad day or, you know, I see this a lot. 

[00:37:40] But if they're not making progress and they're not, you know, then we need to investigate why that is. Because I think one of the most inspiring things that we found in our research is that a lot of the kids that we see who are deaf and hard of hearing are reaching levels of performance for language and academics and things that are on par with their peers, with normal hearing. 

[00:37:58] So we shouldn't, we shouldn't set the bar low and say, well, you know, the reason that this is happening is because they have a hearing loss. It, we need to really. You know, challenge ourselves to say, is there more that we can be doing? Um, is it hearing aid use? Is it that the hearing aids aren't fitted well, did their ear canal get bigger? 

[00:38:19] Because they're growing like, are all of these things are things that we need to track down and investigate, and we just have to sort of be tenacious about it because it's that child's development that's at stake and you can't, you don't want to wait. Till two or three years down the road, and then you find out, Oh, you know, we could've really done something differently to help. 

[00:38:39] Um, and sometimes you look into it and it's, you know, it's sort of a mystery, but I always felt like as an audiologist, that was my job was to try to. Figure out how to get the most out of every situation and provide the most support that you can. And if you're going to be doing that, I think we're at a stage for audiologists are doing outcome measures consistently.

 

[00:39:00] But I think a lot of us aren't sure what to do with that information. And that's where some of our research looking at things over time has been really helpful for me because you do see that these kids have these positive trajectories. And so if you don't see that. Then, um, then that to me is a red flag and that's something that needs to be, you know, investigated with the parents, with the speech language pathologist, maybe with the ENT, um, you know, but taking that team approach. 

[00:39:28] Right. Yeah, no, that's good. That's good advice about that. And then one other question I had about hearing aids too, and especially kids is what's the impact of part-time use of hearing aids. I, and this is just kind of a story. You know, I have some families who are like, well, they don't wear their hearing aids over the summer. 

[00:39:50] So how does that, how does that impact, like that growth trajectory that you were just talking about? Yeah. So I think that's a really good question. Um, and I think there's sort of right now, there's sort of two competing schools of thought that I think we're, we're trying to help. To see if we can do some research to resolve. 

[00:40:13] So there's sort of a group of people in our field who, um, are of the mind that if you're awake, then your hearing aids should be on or your devices should be on. And I understand where that's coming from. Um, but when we look at actual use data from children across the age range, children don't do that. 

[00:40:36] Kids take breaks from their hearing aids, um, and. There are a few kids who that we work with who are sort of what we would call all waking hours, kids, and that they wear their devices all waking hours. But I would say that's maybe 10 to 15% of the kids that we work with. And then there are kids who don't wear their hearing aids consistently at all. 

[00:40:57] And then there's sort of this group in the middle that they wear their hearing aids 10 to 12 hours a day, which is a lot. And, and they're, they're getting a lot of benefit from their devices. And I think one of the important things is we don't really know what the critical amount of hearing aid use is. 

[00:41:14] And so. There's no question that not wearing your hearing needs during the summer is not a good plan, but, but I do think we need to figure out, like, is there a critical amount of hearing aid use that is, you know, that benefits kids and because telling people to wear their hearing aids all day, um, all, all the whole time that they're awake is not, I, I don't think it's reasonable and I don't know that it's actually necessary, um, to do that. 

[00:41:44] But it's hard because nuance is something. I think that doesn't get a lot of credibility these days. So you either have to be like extreme one way or extreme the other way. And. What I try to talk to families about is like, I'm not going to be upset if, if the child's wearing the hearing aids 10 to 12 hours a day, especially if they're wearing the hearing aids at times that are really important for communication. 

[00:42:06] So I think school is really important. I think family time, time with your family time with your siblings is extremely important. You know, any time it's important to be listening. You know, if, if they go to church or if they're, you know, part of a group where communication's really important, but if the child's at home in their room, reading a book

and they want to take their hearing aids off for a little bit, I don't think that there's any, I think it's reasonable to say, yeah, that's fine. 

[00:42:34] Um, they don't need to be wearing their hearing aids when they're in their room. They need a break. That's fine. They're in the room. It would probably be really nice to be able to turn off our ears in those listening situations and just focus on reading a book sometimes. So. I tend to fall somewhere in the middle where, you know, I, it worries me when I talk to families who say, well, they wear their hearing aids at school, but they don't wear them at home because to me you're missing out on so much important communication when that happens or what you just said, where they're wearing the hearing aids during the school year. 

[00:43:04] But in the summer, we don't really worry about it. And, um, and I think parents are usually good, a good judge of, of that, but we just want to. If they're not using their hearing aids, we want to keep the amount of time that they're not using them to short sort of reasonable episodes of time. So, you know, a couple hours at night when they're winding down. 

[00:43:26] Down. And they just want some time off the air. That's totally reasonable. But if the child is interacting, communicating, those are times that we want them to have their amplification so they can access that communication and get the most out of it. And so that they're not struggling to try to, um, communicate with their family or, you know, it, you know, Or those kinds of things. 

[00:43:46] So, so I, I tend to fall somewhere in the middle, but it makes people on both sides mad because some of the parents are saying, well, you know, aren't you saying, it's okay that they're not wearing the hearing aids. And I'm not saying that. And then the people who are all waking hours are saying, why aren't you encouraging to wear them all the time? 

[00:44:03] And it's like, well, because I don't know anyone who has hearing aids that does that. So I think at some point we needed to talk to the people. Like adults with hearing loss and say, well, what was your experience? And what do you feel like was helpful? Because I, and I don't know what your personal experience was, but I would guess that you probably didn't, you know, where your hearing aids or, you know, or now your cochlear implant, you don't probably wear it all the time. 

[00:44:27] And I think that's probably okay to give yourself a break, you know, and not be in the all waking hours. Um, But what do you think about that? I agree with you for most of it, I would say, you know, at night after. about eight o'clock I'm like I'm done. I've had enough auditory stimulation for my day and I just don't of course, that's the time when my husband wants to talk to me, is that okay? 

[00:44:55] Can I have anything off? I'm like, could you have talked to me like three hours before this, that we were together? Uh, but you know, he tends to come up with. conversation after I've decided that it's time to take off all my equipment and then it's

too much of a hassle to get it back on again. So, uh, but I do agree like probably after eight o'clock, like, I just need, I am done for the day. 

[00:45:20] I put it on at seven in the morning and I, yeah. So it's a long time, I think, where I struggle sometimes with. with that aspect of it is when families do take it like, Oh, well he takes a break and then that never gets put back on again. So, you know, they come home from school and they take them off. And then there was a lot of conversation that happens, like you said, the dinner table or extra activities that, and they don't put them back on because it is kind of. 

[00:45:55] That's a hassle. I need to go get them again and put them back on. I mean, I know it only takes a second, but it's still like, I gotta go back upstairs or wherever I keep them and get them back on my ears again. So just easier to do without, so I think it's finding, it just depends on the family sometimes. 

[00:46:15] Yeah, totally agree. And I don't want to make it sound like, I don't think it's important that, um, That we encourage consistent use. I just think our messaging around it is not very nuanced, right? Like, you know, we, we really don't have any evidence that you have to wear your hearing aids, all waking hours to help you. 

[00:46:35] Right. And in fact way I'm during critical periods communication to help you. Yeah, the thing I always use. So, you know, anytime you work with families, especially of infants and young children, you, you realize the real challenge here. And that is like getting an infant to wear a hearing aid. And one of the things that I always used to emphasize to families was quality time over quantity of time. 

[00:47:01] So. You know, if a family was really struggling with hearing aid use and their child, what I would say is pick the times during the day. That you're engaged and that your child is in communication with you and focus on those first. I don't care if your baby wears the hearing aid during nap time. I really don't. 

[00:47:23] I don't think there's any benefit to that. Um, and in fact, it probably helps them sleep better and it probably helps you to relax. If you know that you're not going to walk into the childs crib and see the hearing aid in their mouth. Right. But some of these parents take the all waking hours piece. To be, you know, I can only take it off after they fall asleep. 

[00:47:42] I mean, there are parents who are worried that they're going to hurt their kids, if they don't try to get them to wear the hearing aids all the time. And, and I think we just need to build on success and say, what are the times in your family's routine that are, that, you know, are the most interactive. So is there reading going on, do you read to your child? 

[00:48:01] That's a really good time for hearing aid use. I think mealtime having, you know, And then it allows you to have conversations about, you know, if there's interaction where the TV's not on, you know, in the home. I mean, there's just lots of things that we can do to 

help families sort of build success. And because it's going to be, uh, a challenge that paper that Beth published with infants showed that, um, the infants were wearing their hearing aids about four hours a day.

[00:48:30] And the parents were telling the audiologists that they were wearing them about eight hours a day. Hm. And I don't think that's because parents were trying to deceive the audiologist. I think the parents wanted to make the audiologists happy and they wanted the audiologists to think that they were doing a good job. 

[00:48:47] And that's because the audiologist says they need to wear the hearing aids all waking hours. When I think what we need to say is, you know, what can we build on, what are the successes that we can build on with hearing aid use over time? And I think that's just, it, it's going to become a more positive thing for parents and they won't feel ashamed if. 

[00:49:05] Because it's hard, you know, like it's really, really hard. And, um, and that's, we tried to start all of our conversations about hearing aid use with that. Like it's difficult. You know, the analogy that I always use is I can never keep shoes on my kids when they were little. So the idea that you can keep a hearing aid on them is sort of remarkable, you know? 

[00:49:24] So just sort of giving parents the, the freedom to say. You know, what's what, what do you think is going to work best for your child? And then letting them, you know, take the lead? I think that's so important, but you're right. We do have to reinforce that if 

they're taking breaks, they're short, we don't want extended periods of time without hearing aids more than more than an hour or two, you know, without the hearing aids, as a, as a choice is, is, is a problem. 

[00:49:53] And, and, and so we do have to. Be strict about that and say, it's not a free for all where you can just wear the hearing aids when you want. Um, but, but, and then having that link for them that that it really is important for their development that they wear their hearing aids. Right, right. Yeah. No, this was good. 

[00:50:11] I'm so glad you guys are doing all this research on hearing aids and kids and, and what, what they need. Is there anything Ryan, I didn't ask you that you want to share with listeners today as a takeaway. No. I mean, I just think, uh, it's such a cool time, uh, to be in our field and to be working with families of children who are deaf and hard of hearing, because, um, when I started out as an undergrad at Northern Colorado, I was still seeing kids in the lab school there that were identified with hearing loss when they were two or three years old. 

[00:50:49] And they were wearing these big bulky. You know, body aids that sent one signal to both years. Right. And that was pretty, I thought that was pretty cool, but now we're fitting babies and we're, I mean, and that, I don't feel like I'm that old. And I feel like things change really, really fast. And it's been a challenge because we've had to have research to kind of keep on top of those changes. 

[00:51:12] Right. Because before that, we didn't really fit infants with hearing aids and now we're doing it all the time. So. I just think it's such a cool time right now. I don't think there's ever been a better time to be in our field and to be helping people. And, um, it's just, I'm really excited to see like what the next 20 years are like, because if we make as much progress as we did in the last 20 years, it's going to be amazing.

[00:51:34] Like it's, it's just, it's going to be cool. So that's. I just, I'm so excited about it and I really appreciate the opportunity to come on your podcast and talk your ear off. It's it's, uh, it's been fun. Well, thank you for coming on. I really appreciate it. And I know I listened to if they're going to gain a lot from listening today. 

[00:51:53] So, um, Ryan, what I'm going to do and I show notes is put a link to your webpage. So] I know you guys at Boystown have so many great resources to share with professionals and parents and the like, out there. So I would definitely link that to the show notes. And again, thank you for being a part of empowEAR Audiology. 

[00:52:14] Thank you, Carrie. I really appreciate it. All right. Thanks again. This has been a production of the 3C digital media.

Episode 16: EmpowEAR Audiology - Dr. Michelle Hu

[00:00:00] Welcome to episode 16 of EmpowEAR audiology with Dr. Carrie Spangler.

[00:00:16] Welcome to the EmpowEAR audiology podcast. My name is Dr. Carrie Spangler, and I am your host, a passionate audiologist with a lifelong journey. Living with hearing challenges in this vibrant hearing world. I wanted to have an empowering podcast for all of my listeners. Many of us learn and grow by being a communication and connection with others.

[00:00:40] It is my hope that all of my listeners will learn something new and be empowered after each episode, whether you are a professional parent individual with hearing loss, or just want to be inspired. I am glad that you are here with us today. I would be grateful if you take a moment to subscribe and give a positive rating for this podcast, also like the Facebook page EmpowEAR audiology and engage in the conversation about each episode.

[00:01:11] A transcript of each episode is also available on the 3C digital media network webpage and the section of podcast. So one of my favorite topics to share about professionally is the critical need to have peer to peer connections. As humans, we thrive in community, many connections I've made because of a common bond, whether it is through work and activity, kids, a loss, or a celebration.

[00:01:41] Through my own personal and professional experiential hearing journey, I have found the need for peer to peer connection with those who share a similar hearing journey. And so today I am so excited to introduce Michelle Hu I cannot wait to have this podcast conversation because it really highlights the power of peer connection.

[00:02:05] We met recently because of a shared mentor and shared audiologist Dr. Carol Flexer, who suggested that we connect. And this connection was immediately. So let me share a little bit about Dr. Michelle Hu. Dr. Michelle Hu, who is a pediatric audiologist originally from Kent, Ohio, and now lives and works in San Diego, California.

[00:02:31] Something unique about Dr. Hu is that she also so grew up with a hearing loss and now utilizes bilateral cochlear implants.  Because of our personal experience she feels especially equipped to work with children and their parents. She is the creator of mamahuhears; an Instagram account, where she shares her personal and professional experiences as an audiologist with hearing loss.

[00:02:57] She was inspired to create mamahuhears when her own patients and started growing up and having children of their own and asked her how she heard her baby cried in the middle of the night. So again, I am so excited to have you today. Michelle, welcome to the podcast.  Thanks  for having me. I know that we only recently met, um, but I've always heard about you in the past, through our mentors, through our mutual friends.

[00:03:27] And it's just so fun to actually get to connect and create something with you. So thank you. Yes, I thank you for being gracious to come on the podcast today. And I'm really excited to have a conversation, but I wanted to find out from you and for all of our listeners just to be inspired, but can you just share a little bit about your own personal hearing journey growing up and school and all of that good stuff.

[00:03:54] Yeah. So for me, um, I wasn't diagnosed with hearing loss until I was about three or four years old. I might have been born with hearing loss. I don't know because they didn't do hearing screenings in the hospitals back then. Um, so my preschool teacher actually told my mom. You might want to get Michelle hearing tested.

[00:04:14] Um, she's kind of sneaking off on her own during story time, she's reading her own book or she just sitting by herself in the corner. Um, and I got diagnosed with a mild hearing loss. I was fit with hearing aids pretty soon after that. And my mom tells me now she was, she was shocked, um, because I had pretty good speech and language.

[00:04:35] I would Respond to her, um, requests at home, whether it was English or Chinese, I would, you know, go get the shoe there, go get the plate, whatever it was. Um, so she was very surprised, uh, when I did get the hearing aids though, I was just in awe. Um, sound, I could hear the birds outside. I could hear my dad showering.

[00:04:58] I could hear the garage door opening when he came home from work. So it was, it definitely made a difference even with a mild hearing loss. And, um, at that young age, I. I knew that they were good for me. My mom said she never had a problem keeping hearing aids on me or losing them because I immediately attached that value of sound, um, to something positive.

[00:05:25] And she says she had it easy as a parent with hearing loss or a kid of a kid with hearing loss, because I was just that way. Um, My hearing loss is as a result of enlarged vestibular aqueducts, or EVAS as well as Pendred syndrome. Pendred syndrome is a recessive syndrome where both of my parents carried the gene and I was one in 25% chance of.

[00:05:52] Getting a hearing loss. My brother, I don't know. He hasn't taken a genetic test, but he has normal hearing. So he could be a carrier, um, [00:06:00] or he could not have it at all. Um, so, and it's just a saliva test. My husband took it and, um, I know that all of my kids will be carriers, but they will not have Pendred or EVAS because he doesn't carry it.

[00:06:15] Um, so for me, because I had EVAS, every time I bumped my head, my hearing would get worse. So I was probably a cochlear implant candidate by maybe age 10, but I actually didn't get a cochlear implant until I was 27 or 28 when I was learning about them in school. When I was in school for audiology, um, I went home and I told my parents, Hey, did you know about this cochlear implant?

[00:06:39] Like, this is what I'm learning about. It's really cool. And my dad said, you know, We've known about it and we just never thought that you were a candidate number one, because you did so well in school. Um, and number two, they just weren't sure about the technology yet. Um, but with me learning more about it in school, knowing that it's not necessarily a last resort, it is an option for me.

[00:07:07] Um, I ended up getting my first cochlear implant and plan during grad school. So my classmates were there at my activation and, um, I don't recommend this, but I watched the surgery probably two weeks before my own because of my rotations. Um, and so that was a little, a bit nerve wracking when I was in, uh, um, surgery bay, just waiting to go.

[00:07:33] And I was like, wow. I know what he's going to do to me. Like, I'll be asleep for it. Um, I got my second cochlear implant out here in California, um, after I started working. So there were about three years in between my two cochlear implants. Um, and it's just been a wonderful journey. I've had definitely, definitely had ups and downs.

[00:07:57] It's very scary when you have a sudden hearing loss. Uh, I grew up afraid of hitting my head and, um, Just being challenged every single time, emotionally, mentally, physically, and needing to dig deep and figure out what am I going to do? What do I want? And then how do I get there? So that was kind of how that's my.

[00:08:20] Like my little hearing, hearing journey story. Wow. I have so many questions. I don't even know where to start. So I'm going to like back up a little bit. And so you grew up right down the street from me. I'm I'm older than you. So we never, crossed paths.. One thing,  I know I'm older than you. And, uh, and I grew up in Stow and you grew up in Kent, so we were next door, like rivals.

[00:08:52] Uh, what was your experience like going through mainstream school? Do you have any things that stand out that listeners might learn from. A few things stand out. Um, I had a sudden at my hearing dropped in first grade, third grade, fifth grade, and then senior year of college, the first drop first grade, I, he said that I told my teacher, Hey, my hearing aids don't work.

[00:09:24] And my dad remembers bringing new batteries to school and they still didn't work. Um, I don't remember which time, but my mom said that she felt like it was the end of her world. You know, she didn't, she didn't have anybody. She didn't have the community that you talk about, not until she met Mrs. Lim and Dr.

[00:09:45] Flexer. Um, she. She literally didn't know what to do. So the options were, you know, you need to do sign language, which is fine. Um, we just didn't have that much [00:10:00] of a community, um, around us. And I also, I already had so much spoken language at age three to four, you know, I'm sprouting out sentences. I'm talking to everybody who would listen to me.

[00:10:13] Um, but I remember my first grade teacher. When my hearing dropped my mom went to school with me. Like she sat in the classroom next to me and helped me with whatever lesson we were doing. And my first grade teacher, who I’m am still friends with Mrs. Johnson taught my mom, Mrs. Hu you need to go home. She's going

[00:10:38] She's going to do okay. She's going to be just fine. Um, That's one thing that sticks out to me when I lost my hearing again, senior year of college, that might've been the most devastating for me. And it was because I. Had a plan I was studying for LSAT. I wanted to go to law school, my hearing dropped  and I was like, how am I going to hear in the courtroom?

[00:11:12] How am I going to hear lectures? Um, and my mom was sitting next to me in the waiting room at Cleveland clinic, waiting for hearing tests. She looked over and she said, you might be a good audiologist. Have you ever thought about that? Hmm. And she knew at that time, I was like, I think I'm going to go to law school.

[00:11:30] I don't know if I, I just didn't know what my, I had a plan, but I wasn't sure. Sure. If it was a short plan, if that makes sense. And, um, I emailed Dr. Flexer probably that day. I said, what do I need to do again? The audiologist, can I do this? Luckily, my prerequisites of pre-med biology, anatomy that transferred over, um, and she wrote a recommendation to the admissions board and I got into grad school then.

[00:12:03] Right. Luckily like, I mean, it was kind of like a fate or kismet happening. Um, but it just goes to tell me that from tragedy or from darkness can come amazing opportunities and doors open. You just need to open up your eyes to see that they are there for you.  With my hearing loss, there have definitely been ups and downs.

[00:12:30] And I think it was community, it was positive attitude, positive mindset. My parents are very, um, where's the silver lining type of people. And that if, if that's the only thing that I had I think is what fueled me to kind of be here where I am today, because my job, I really feel like. Is a place where my whole entire life, all of my experiences are optimized and utilized, um, with the children and the parents and the families that I work with.

[00:13:10] I'm sure you feel the same way with your job. I do. I do. And it's hard to see that sometimes. And I think reflecting on all of those moments really makes. Yeah, by the audiologists. And you think about those things and then you implement programs or you implement different opportunities within your practice for families because and children, because it was built out of your own need, right?

[00:13:40] Your own need for support or. Whatever you are having to face too. So what of questions? Well, what do you think was your greatest challenge? And I w do you think it was your senior year? That was definitely the most challenging situation. Um, but I think one of the greatest challenges actually stems from.

[00:14:09] My parents didn't treat me any differently than my brother. Like maybe because maybe more protective because I was a girl or something, but, um, in terms of be a good person, get good grades, you know, be respectful of your elders. Um, they had the same standards as a human being for me then as my brother.

[00:14:34] And I think that. That was the best thing that they could have done for me, because it kept me motivated. It showed me you can accomplish anything that you put your mind to. There isn't anything wrong with you. But on the flip side of that, I didn't know. I didn't, I didn't know. I didn't have the words and the safe space to know that I was different.

[00:15:17] I knew that I was different, but I didn't know how, like, um, like I knew I had hearing loss and I knew nobody else had hearing aids besides me and one friend Stacy and a mutual friend. Um, so I had. Like a twist in my brain or something that wasn't acknowledged, if that makes sense. Um, and it was challenging for me because I think I did choose to define myself with hearing aids or hearing loss.

[00:15:52] And, um, I felt very alone. I felt like I was the only one. Navigating. Macgyvering  my way through school. Uh, listening situations, church, um, listening to my brother within a youth symphony orchestra, listening to that. And I didn't know that it could sound different until I got my cochlear implant. I didn't know that you could hear individual stringed instruments or horned instruments.

[00:16:27] And I was like, Wow. So I remember back to his concerts, it was just loud, like bump up. Um, you know, and I don't think I developed a music appreciation until later on, so I don't know. I'm getting back to the question. I don't know what label or what specific challenge it is except to call it. I. Wasn't sure who I was.

[00:17:00] Yeah. And that's hard. I think throughout, especially that adolescent teenage years, when every teenager is trying to figure out who they are, and then you add on hearing loss on top of it and being the one and only, and thinking, wait, why am I the only one going through this? And I don't know anybody else who's going through this that I found that.

[00:17:25] To be hard as well, going through.  Did  you haven't any mentors or role models or anything. So my first model, who I just interviewed too, was I'm Karen MacGiver-Lux, and she is an audiologist, but I met her. Probably going into my right before I started my freshman year of college. So going through it was later, it was a lot only those developing years of trying to figure out who you are, what you are.

[00:18:00] Um, what to say when people ask, we all had to, we, you and I both had to come up with it on our own. Yeah. I had some crazy thing I would say, Oh, their radios on my ears are in the winter, their ear warmers. You know, I mean, now we have Bluetooth devices nowadays, so people could believe you, but yeah, they can be, I got wearables.

[00:18:26] I'm just wearing my wearables.   So yeah, it was. I think the first time I realized that I was truly different as like nobody else that I was friends with had any hearing loss was when I went to a sleepover and. It was one of my first sleepovers. And I remember there being probably five or six girls or whatever, and they turned the lights off and they're still talking.

[00:18:56] And I was like, what people can hear in the dark. It was kind of this light bulb that went off and I thought, Oh, I can't do the same things that everybody else can do in the same way. Yeah. So that was kinda my light bulb. I remember like then taking a flashlight from now on and like putting it under people's mouth during, when they would turn the lights off.

[00:19:26] So I thought I could see them. Are you afraid of the dark, that, that show where they hold them?

[00:19:35] Remember when sleepover? Um, we all went to bed. And I woke up the entire room of like 10 girls, because I rolled over on the taboo buzzer. And you didn't know, I checked my ears, my hearing aids off I, this buzzer is going to be waking up everybody. And I'm just like asleep.

[00:20:00] But also like playing games, like telephone were terrible that you did not want me anywhere in that line because I would completely change up that message. Right. Either you want me to number one, the first one to start it up or you don't want me in the game? Yes. That situation were very stressful. And I.

[00:20:27] Like what you just said. I didn't have the words to explain to my friends why this game isn't going to be good for us to play right now. I tried to just, I guess, muddle through whatever, you know, plow with the way where it, and try to fit in instead of. I'm saying something different. I feel like you're very similar with, to me though, you have a very positive mindset.

[00:20:54] Like, do you feel like I've been asking people, do you feel like it's just a personality trait or what was that that helped you  And I, you know, Not be so down about it or not be so negative. What do you think? Well, when you described yourself, as far as, you know, being identified about the same time, I was about four and I was a pretty outgoing person, even though nobody could understand what I was saying.

[00:21:29] Cause I think I was born with, with the hearing loss. So my speech was not that great, but I always. I was always the one going up to strangers and talking to them. Um, so my brother who was little younger than me, he was the shy one. So he was, yeah. And he has normal hearing. So I don't know if it's that.

[00:21:53] Are you firstborn? No, I'm the baby. They thought my brother had hearing loss because I was talking and yeah.

[00:22:06] So I think it is part personality trait. I think it is part of what you said. My parents were the same way. Like I was expected to get good grades and, you know, do my best and be nice to people and participate in activities. And I love that I was involved in sports and have that, you know, friendship community there.

[00:22:32] And, you know, I, so I never. Used my hearing loss as a crutch, I didn't know to even do that. So I think that's the positive of it. But I agree with you. I didn't know anything about my hearing loss, except that I had hearing loss and I had to wear hearing aids. And that was about the most I knew about.

[00:22:58] About it. So, yeah, that's why I feel like being an audiologist and you probably feel this too, what we can do to empower a kid to know more about why they have a hearing loss, why they have communication struggles. How do  I navigate those in a positive way is really important for kids. And to have that connection with someone, Oh, connection is so big and community.

[00:23:26] One thing that I do tell parents, um, often is that it's harder to acquire a hearing loss than grow up with it. Because we don't know better when you're older and you're used to things sounding the way they do and things, something happened, either your hearing loss, hearing deteriorates, or you have a sudden hearing loss, you miss what you had.

[00:23:50] You keep looking back instead of forward. Whereas children, I think one of my professors said, um, Does a three legged is a three legged dog any less happy than a four legged one? No, like you see them at a park and they're still going crazy after that ball. Right? Um, it was just a fun analogy to hear  and say, yeah, like, of course, when you're young, all you want is snacks and toys and games, and to hang out with your family and everything is provided for you, you're taken care of.

[00:24:30] So you don't know any better. Versus when you're an adult and you acquire it later, I think it's much more difficult, um, that you don't have that safety net of people surrounding you taking care of you, which is why when we're older community is just so much more important. Especially now with COVID, it's really hard.

[00:24:52] And that is yeah. That I I'm ready to be done with, but I guess, so you didn't have any mentors growing up, like going through Kent then like going through your grade school or middle school or high school? Mrs. Lim Stacy's moms. My mom and I at mama me at a library one day. And, um, I think she saw my hearing aids and she told my mom, your daughter has language continue with that.

[00:25:23] Get into speech therapy, um, utilize what she already has get in touch with. I'm not sure if she connected us with Dr. Flexer, but, um, I got my first pair of hearing aids Uh, A, I think a general audiology office and then switched over to U of Akron with, um, Dr. Flexer. Um, and she

[00:25:51] Stacy and I became family friends. So my mom and hers are still close friends to this day. But I feel like we never talked about hearing loss, which we didn't, I don't feel like we need to, we just need people around us that, um, have gone through or understand the similar situations. But looking back, like that challenge that you asked me about, I wonder if we ever, you know, did a few exercises of practicing explaining what my hearing aid was or what a hearing loss was.

[00:26:26] That would have prepared us more for school situations, um, conversations or how to be an advocate for ourselves. Dr. Flexer was very good at, um, empowering me, you know, uh, telling me what I needed, what I needed to do. Um, But having other peers I bet would have helped. So that's kind of how I, why I started mamahuhears  is on Instagram because I'm able to, what I love about my job is I'm able to give parents hope and.

[00:27:05] An open window just by me being me. Um, more times than I can count, parents have looked at me and said, Oh my gosh, my kid's going to be okay. And I said, absolutely, she's going to be okay. Your child is still perfect. They can still do whatever they decide they want to do. They can achieve anything. Um, But when it it's, I want to be able to give children, adults, anybody, the words and what to do or say so that, um, In, in difficult situations that they're uncomfortable.

[00:27:45] If they don't have a community, if they don't have a friend who's been through it before, you know how like mothers, they claim to their mama tribes, because they're not the first person in the world to have a baby. Right. And you know, how do I potty train? How do I, how do I do, how do I handle a terrible two tantrums?

[00:28:07] You ask somebody else. You say, what, what worked for you? What worked, what didn't work for you, you listen to stories and you navigate and you take in, take what works for you and what didn't work for you. You toss it away. Um, but same with hearing loss. That's what, that's why I created my account. I really wanted to have a safe space and, uh, to provide.

[00:28:28] Dialogue or tools to help people with hearing loss or moms with kids, with hearing loss, um, navigate that journey because it really is a journey. It's not just a one-time situation. It's the life. It's the life. It's the lifetime. It's the lifestyle, right? Yeah. Your kids are always going to be your kids, right.

[00:28:47] No matter how old or young they are. So you're always going to be a parent to them and how you support them. Yeah. And I would say just as a side note, going through that, the cochlear implant process just a year and a half ago, not even, not really. I guess brought back that need for, to have those peer connections who were different, you know, people who have already gone through the process.

[00:29:20] I mean, and like what you said you were going, you were learning about it in school, right? I mean, as professionals, we know the process and. An ENT can say, I'm the greatest surgeon in the world and your mapping audiologist can say this, but there were questions that only someone that has gone through it can answer.

[00:29:43] And that was my safety net and really what I relied heavily on going through the pre cochlear implants. Thought process and then going through the process. And then even now I still have questions about what I should be doing and or what it sounded like to somebody else. Yes. And to put ourselves in a patient role.

[00:30:11] Oh, I know. I was like, Oh, I'm on the other side of the table. Now I know how my families feel on the other side of the table. And I know this information and they are hearing this for the first time. So it really puts in perspective, all that emotional support that is so needed along the way. Or even the mental and emotional thoughts that you have in the booth when you're being tested, like, you know what they're doing on the other side, but you also need to not be the doctor and let them look at you objectively.

[00:30:51] Which is really hard, isn't it, it's so hard for me to be that patient and when it comes to myself, but I wanted to ask you more and you brought up mamahuhears. And just tell me more about some of the stories that you shared. And you said you got, it started because of your own experience of having kids.

[00:31:17] So share a little bit more about that. Yeah. So, um, I was on maternity leave and I actually missed connecting with my patients. Um, so. And something that I've also never really been able to do is be friends with my w be friends with people, with hearing loss, that community that you speak about. I didn't have it really until I started this account.

[00:31:43] Um, because I was usually their clinician. I was like, well, HIPAA says, no, sorry, I can't be friends with you. Um, Because some, a lot of moms have asked me, you know, can we exchange numbers? I feel like we would hang out in real life. And as much that I wanted to, I just couldn't. Um, with Instagram, I'm able to reach out to more people.

[00:32:08] I feel like I'm able to help more people this way, whether it be just by an infographic. Um, about audiology information or, uh, things, life hacks that I've done, it started with. Um, how do you wake up at night when your baby's cry? And, um, a lot of times I would say, well, my husband can hear, he can, he can make me up, but he travels a lot for work.

[00:32:35] So what am I going to do? Um, What I do is I have my baby monitor. I have a baby monitor next to a sound alert, and that sends a signal to a receiver. That's hooked up to my alarm clock and my alarm clock. Um, it blinks a light as well as shakes. Uh, Has a shaker that I put underneath my mattress. I put it underneath my mattress or my pillow, um, depending on the situation.

[00:33:03] Now it's under my pillow because if I put underneath my mattress, my husband would wake up too. Got it. I did with that. And I just realized the experiences, experiences that I've had can help other people. And. Like we talked about young kids. They don't know any better. I didn't, I don't really know any better.

[00:33:29] What I do is different from somebody else until people started pointing it out to me. Hey, what do you do? You know, can you drive. Yes, I can drive. And I'm actually much more observant of my surroundings because I'm used to needing visual cues to survive. Um, and it's been about a year now since I've had my Instagram and my goodness, the community, the question that come up, the, um, the.

[00:34:01] The messages that are full of gratitude from moms or followers it just really fills my heart. And I know that I'm making an impact. I'm helping moms of kids with hearing loss, and I'm helping people with hearing loss that might be struggling in their journey, or just need to know, Oh, somebody else is out there.

[00:34:23] And she hates that situation too. Doesn't like the word “nevermind”. Um, or. Has, you know, is trying to figure out how to wake up from a nap or do they wear their devices to sleep all of those situations. So it's. I'm going to continue it. I have to, um, it fills my heart because I'm able to connect with people.

[00:34:47] I get ideas from them all the time too. And it just gives me a sense of belonging, you know, like you and I, we're not, um, completely submersed in the capital D deaf community. I didn't grow up around it at all. Um, but, but we do have hearing loss. But we can still hear and speak. So, you know, we're in between.

[00:35:12] And, um, I'm actually in the process of putting together a video of in-betweeners and, um, we're a growing population that needs to be heard, needs to be recognized. And, um, we're there, we exist and we're honestly, we are, uh, Huge group of bad ass people. Right. I love it. Yeah. Well, and I think that's so true because you know, the Deaf community, which is awesome that they have this amazing community and it's very, I think visible, it's visible and people see, you know, the sign language and see ASL and you see it on TV.

[00:35:54] You see it everywhere. And so where that is invisible in between where the like, Oh, she's got a cochlear implant. She has a hearing aid. She must be okay. And, but we still have the same, you know, we still have struggles of communication and, um, barriers that we need to figure out how to navigate on a daily basis and having that community, having that community really helps you get through that.

[00:36:28] So, one question, what is your, um, Do you have a post to something that got the most attention on your Instagram that you posted? For me, it was the invisible load of hearing loss or invisible burden of hearing loss. Um, I think it really hit a tone or a button, um, for people because. It's just a picture of, um, the load or the weight, the mental weight that we have on our shoulders.

[00:37:01] We have extra appointments. We have, uh, electronic devices that breakdown. sometimes. we have difficulty on telephone. Now we have difficulty with mask communication. I look at listening. Fatigue is a huge one. All of those things. Um, I think. Or the post in particular, I think gives my audience or people with hearing loss a means to explain it.

[00:37:33] And they don't have to come up with the words on their own. A lot of my followers have shared it with their family or they posted it in the kitchen. Like they print it out and put it on the refrigerator, just an FYI, like. I am carrying all of these things that you don't see. So that one was well received and, um, I've been translating it to different languages as in Korean and Spanish and Italian and French.

[00:38:01] My mom is doing in Chinese right now. Um, so that one just really struck a chord because. It gave people the words and a tool to be able to say, Hey, this is what, and I'm going through. Can you, could you look at it for me? And then the people that were reading it, who might've had normal hearing, or like, Oh my gosh, like I get it now I get why you're tired.

[00:38:26] You know, you're, you, weren't angry or frustrated directly at me. If you have a lot of weight on your shoulders, um, growing up and living with hearing loss. So. Yeah, we live in a very noisy auditory world that we have to take in so much information. And, and especially now we can't have one-on-one conversations with everybody or anybody anytime you want.

[00:38:51] Yeah. So I. Didn't ask you that you want to share with us because I think your story is amazing. Your Instagram is amazing. I I definitely have to get the the link for  all of our listeners, and we'll put it at the end of the show notes. So people can link right to your Instagram account and follow you.

[00:39:17] I, I. It's going to be great for people, but is there anything I didn't ask you that you want to share? I feel like you and I could talk for hours on end, but, um, my Instagram is mama.hu.hears. I also just, um, opened up my website is mamahuhears.com. Um, that. So then people who aren't on social media can find me and, you know, take a look at some things there.

[00:39:49] I'm trying to link a blog on there, but, um, that is just a work in progress. And hopefully I'm, I'm in the works of a children's book because I really want to give children the words and the scenarios and a safe space that I didn't have when I was younger. So stay tuned for that. Yay. Well, Michelle, I just want to say thank you again for coming and the, EmpowEAR audiology podcast.

[00:40:15] It was a great conversation and I'm sure all of our listeners are going to really benefit from having your resources, whether they're professional or a parent or an individual with hearing loss, we need to have that peer. To peer connection and to learn from each other. So I'm so grateful for everything that you have done for our community, and I cannot wait to connect  further and, and hopefully do something together in the future.

[00:40:43] Yes, please. Thank you, Carrie. Thank you. This has been a production of the  3C digital media network.

Episode 17: EmpowEAR Audiology - Parent Panel

 

[00:00:00] Welcome to episode 17 of EmpowEar Audiology with Dr. Carrie Spangler.

[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 human challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals, with your own challenges and those who want to be inspired.

[00:00:45] 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 on the EmpowEAR Audiology Facebook group. transcripts for each episode can be found at www3Cdigitalmedianetwork.com, the number three, C digital media network.com under the EmpowEAR Audiology podcast tab.

[00:01:18] Now let's get started with today's episode. Welcome to the EmpowEAR Audiology podcast. I am really excited today to have four parents join me and they have become quite a tribe when it comes to raising their children who are deaf and hard of hearing. There are international and national articles and organization that recognize that for parents, with children who are deaf and hard of hearing parent to parent support is a vital service organizations such as the AG Bell Association for the Association for Deaf and Hard of Hearing, Hands and Voices and others provide service models of parent to parent support that could denies in the importance of family wellbeing and servicing a child who is deaf or hard of hearing.

[00:02:08] The reason that I am so overjoyed about this podcast is because these moms bring this research to life. I am hopeful that our listeners will be empowered to foster this framework in whatever capacity that you serve. If you're a parent, I hope you're inspired to get connected. If you are a professional, be motivated to make important connections.

[00:02:30] If you are a part of an early intervention system, ensure your families get connected. And if you have a hearing challenge considering mentoring a family or connecting with a peer mentor, So today let's get started and I wanted to welcome all of these fabulous moms to the EmpowEar audiology podcast. And thank you for being brave and coming on today and sharing your stories.

[00:02:55] So I was just going to have each of you introduce yourselves and just to share a little bit about you and your family and your child  on and just a little bit. So everybody got to know who you are and then we'll have some great questions afterwards. So I am going to start with Nancy since I reached out to her first and have her share a little bit.

[00:03:17] I like that is a lot of pressure. But my name is Nancy Larker and I don't know, gosh, like, I guess if you Google me, I'm probably not very interesting, but it would probably tell you like, You know, I I own a business with my husband, a local technology company in Akron. And I dunno, like what it wouldn't tell you, however, is that like, I love the beach and good food and wine, but most importantly, I love my three kids, so I have three kids and my oldest is my son and he's 11.

[00:03:51]And he is hearing, and then I have two daughters a 10 year old and a seven year old. I had to think about that. Cause they both recently had birthdays, a 10 year old and seven year old. And both of them were diagnosed with mild to moderate hearing loss at birth. So and they are the reason that I'm here talking to you and with these amazing women.

[00:04:11] So I'm so grateful, grateful to have all of these women in my life. And yeah, so that's me. Hi, thank you, Nancy. Maggie, do you want to go next? Hi, my name is Maggie. I  have a husband and two children. My oldest is 11 and she was diagnosed at birth with a mild unilateral hearing loss. And currently is a moderate to severe hearing loss bilaterally, and I have a nine-year-old who is typical hearing child.

[00:04:47]Professionally I work in the early I'm an early childhood intervention specialist for families that are aged at birth to three with autism. So that's the shortest bit of my professional and personal life. All right. Thank you, Stephanie. Hi, I'm Stephanie. I have a husband and three kiddos. My oldest was born with a bilateral, mild to moderate hearing loss.

[00:05:17] And we went through some trials with her. They didn't think at first that it was actual loss. They thought she would recover from it from fluid. And thankfully we did our follow-up visits and found that it was a permanent loss for her. Then I have two younger ones who are I didn't, I don't know if I said Austin's 10.

[00:05:37]The two younger ones are seven and five and they're both hearing.

[00:05:45] Hi, I'm Tina Pudelski . I am, I have a husband as a says, I love how we just turn them as husbands with no names. Let's just keep it that way. So I have a husband and I have two kids. My oldest of which was born with bilateral profound hearing loss. She was implanted and that was at birth. I was diagnosed with a newborn here and screening.

[00:06:08]She was implanted five days before her first birthday, and she is going to be she's 10 and a half right now. And I also have a nine-year-old hearing, typical hearing child. I am currently the Ohio and voices board president, which is a parent support group and, and also an advocate for other parents with the hands and voices community.

[00:06:35] So thank you for having us. Yes, thank you for being here. And I just wanted to, for all of our listeners, just to talk a little bit about that, there's several different articles out there and the audiology world that talk about a conceptual framework for a parent to parent support for parents of children who have children who are deaf or hard of hearing.

[00:06:58] And within that conceptual framework they really recommend that parent to parent support is critical. So I that's why I want this conversation to go with all of you, because I think you bring. How this parent to parent family to family support really direct, directly impacts all of you guys from a more personal level.

[00:07:22] So I'm going to just ask some questions. I'm going to have you guys determine who might want to take the lead on a question cause you guys know each other the best and we'll just kind of go from there. So I guess my first question to all of you guys is how did you all get connected initially?

[00:07:46] Oh, no, I'll go. So we all met through the regional infant hearing program, which was a local at the time. There was a group that was put [00:08:00] together by the regional infant hearing program for. Parents and families of children with hearing loss. And so we not only got to meet each other there, but we got to meet with other professionals and audiologists, speech pathologists, people who were working with our kiddos intervention specialists.

[00:08:17] And then we also got to meet other families, which was really, I think, helpful. I know it was helpful for us and really impactful. And that's just, that's where we met and we connected. And while that group is no longer what it was when we were, when we were there, we have continued our friendship and you know, continue talking with each other and some other people that we've met through those channels as well.

[00:08:43] So it was. It was, it was a really good experience for us. It, it brought everyone to a personal level and gave us a chance to relate to one another where, and meet each other where we were at the time and go through kind of use each other as a sounding board and a brain dump at times. So, so one thing I would add is as somebody that came into that group a little bit later kudos for the group, for the professionals who brought that  brought parents to parent support as an opportunity.

[00:09:15] First of all. So that's the big goal there, but coming into that group my first day there, what I find is really important that I tell other families is the first support group I went to. I left and I cried. It was not this like magical, wonderful moment where I was. Excited. So, you know what we are today doesn't necessarily represent all the emotions that can happen being around other parents.

[00:09:50] So having other parents, as a support have hearing other stories can be supportive and helpful, but also hearing other people's stories can make you sad. And that my very first support group was sad for me. And I got in the car and cried, like, didn't wanna go back. I did want to go back. But you know, you, it's really easy to compare your child to other people.

[00:10:12] Yeah. And I think that's just what people do. I think moms do it really well, and that was hard for me to, to be at my first group. So don't let that stop you. I think it just kind of shows the trials of being a parent when you don't know what the road is before you A little sad. Sometimes it's little happy.

[00:10:36] So the end result of this group is definitely, I think we remember all the positive things. I don't think we're we're at the end result. So now we are on a continuous journey, not the end, but it's funny. You said that because maybe you did come in. I actually met Maggie before. I think I met Stephanie and Nancy at my house because Maggie did Caelen's nine month or nine month evaluation as a professional.

[00:11:05] And then I remember her at one of the, and they weren't support groups. They were playgroups. We had a great early intervention team,  with RIHP three awesome ladies who put parent support ahead of everything else and brought us together as playgroups. And then it turned into a parent support. I don't remember, Maggie probably Caelen was like 18 months old.

[00:11:26] Maggie grabbed my hand on the way out and said, do you remember me? And I said, I think so. And she said, I was at your house. And then she's like, my daughter here's my daughter. And she was diagnosed as well. So, and I remember Stephanie first day holding Austin, who was a tiny, she looked like a newborn and she was probably a year.

[00:11:46] And she was just, we're all going through the initial stages together, all babies, all trying to be to get through it and figure out what was going on. And so we had a platform, we had a place that was safe. So it was, it was good. It was going to be a part of, but not the end result. Definitely not the end result.

[00:12:08] No, we're, we're still midway through it, I think. Do you want to add anything else, Stephanie? I, I mean, that's how we met all through the playgroups and everything, and I think it was kind of. Neat that we all are. We all have girls that are diagnosed with hearing loss and they're all right in the same age group.

[00:12:30] So not only are we support for each other, but they can be support for each other as they get older. So, you know, we obviously this past year, we really haven't been able to get anybody together, but we do still try to get together with them once in a while and do some activities and things. And so they can at least see each other a little bit, know that they're not the only ones out there.

[00:12:54] Yeah. Which is really important too. And I love what Maggie said about taking that first step, even if you don't want to, because after 10 years look where you guys are right now and you still continue, the journey will never end. So even when the adults you're still going to be that support for them no matter where they are, but I wanted this kind of goes into another question because I know you all met.

[00:13:21] Around the same time and your kids are about the same ages, but they talk about in this revised conceptual framework about the learning parents who is characterized as having a child that was recently diagnosed as being deaf or hard of hearing. And then they talk about a supporting parent who is identified as having kind of lived through it and have having a child with hearing loss.

[00:13:44] And I know all of your kids at about the same age and you've been in this journey together, but do you feel like you have supported, identified these different roles at different parts in this journey together? I think I want you to cop. I want you to talk, Oh, sorry. No, it stayed. I'm going to jump.

[00:14:03] I'm going to jump in on that one, basically, because for a long time up until two months ago I was on a different path still on the hearing loss path, but Caelen had cochlear implants, which yes, it's hearing loss. It was a different different Avenue up until two months ago when Molly joined on that path as well.

[00:14:26]So I think that we have flipped over the past 10 years, whether it was with Nancy's two girls getting diagnosed, and one day it'll be going an IEP meeting, or I'm going into a booth test. What do you think, you know, what do you think? And then the next day that somebody else could be doing the same thing.

[00:14:45] And I think all of us, and I know every can speak, we'll speak up as well. I think all of us played both parts, hands down. Like it could flip within an hour of I'm going into my IEP meeting. I need the support I'm going into this, but no matter what everybody has done the supporting parent role. I met some of my best friends right here, they've sat with me through chemo.

[00:15:11] They came a surprise, surprise me when I was getting an infusion and showed up at the hospital. And they're not just for our kids, they were for ourselves and our marriages and our lives. And so, yeah, I would say a similar thing. I think that even though our kids are, that was interesting when I read that part.

[00:15:30] Carrie, when you, when you sent us this draft ahead of time, was, Oh, am I a supporting parent or am I a learning parent? And I think that I absolutely agree. We have all intertwined and been the other one at some period in time. And it's not just about your kiddos. It does become more. So, but through every transition.

[00:15:54] Yes. And I don't necessarily  think that learning parent has to be the one with the younger kid and vice versa. It's just, I mean, cause our kids aren't even all the same. What I love is that our kids aren't even all of the same type of hearing loss. So we began, I began as a mild unilateral. I thought I didn't even belong.

[00:16:15] I was like, Oh my God, my kid barely has any kind of hearing loss. I shouldn't be here. So I didn't go back for a long time. But we all like span the different hearing continuum and I don't think you need to be a learning versus a supporting it's all changes at any given moment. Yeah. Anybody else want to jump in?

[00:16:40] I agree though. I think it's almost like a continuum that you just continue depending on what situation you might have to be going through or what comes up. And it's always going to change. And I know, you know, from a personal perspective too, like I am an audiologist, but just went through a cochlear implant journey.

[00:17:01] And I reached out to my audiology friends who have cochlear implants, and I learned so much from them going through that journey and where another situation I might've already had a different experience and was able to be more in that supporting role instead of the learning role. So I think it changes and continues to change throughout life.

[00:17:22] Yeah. I'm sure there's a lot of research on just that if you look at transitions with people but one of the things you said, you're a professional and you're. You have personal. And I think so those are the things that have just personally happened to us. I was a professional in a different way that may this highlighted this.

[00:17:41] So some days I did talk to the ladies as maybe more of a teacher or an early intervention specialist, then I put my professional hat on. But yes, hands down. I can absolutely attest to the fact that, you know, as my own child, Molly has went from a unilateral hearing glass to now being a bi-modal hearing user.

[00:18:06] I have experienced the child at all different levels, and I don't necessarily think I had to go to a new support group to get that parent having open hearts and wanting to listen and be heard at the same time, kind of would help you get through that continuum. Maybe it's like an infinity continue. It just changes all the time.

[00:18:30] Yes. No, that's great. So kind of going into that, cause this is getting emotional, but what are the emotional benefits of being connected and, you know, encouraging the other parents to be connected if they're not connected. Yeah. I think Tina nailed it on the head. With that last one when she said, you know, it's not just about our kids.

[00:18:53] Yes. Our kids brought us together. That is how we met it's because of them that we are friends, but our friendship has just gone so much further. And I think we could all agree that we just get it. And, you know,  as Maggie was just saying, sometimes we have to know when to change hats, you know, that professional hat, that friend hat, the mom hat, the, whatever that support or learning hat might be in, it's just, it's just knowing like, okay, you get it.

[00:19:22] And sometimes it's, sometimes it's validating the other person's feelings and sometimes it's offering to help research with them. Sometimes it's, Hey, I'm having a really crappy day. And it's like, can you just cry with me? Cause I just need somebody to cry with me. Like we we've seriously experienced all of that together as, as friends in one way or another.

[00:19:45] And. I think the other thing that we really connect well with on an emotional level is just celebrating victories. So we have, like, I think any parent who has a child with different needs can, can relate to the fact that there are various victories that need to be celebrated and whatever that milestone is, it could be very different.

[00:20:08]And so no matter what it is, we celebrate in those together. I, I remember the day that Tina came in and said that Caelen said the word cookie, and it was like, we, we knew like she can hear like, you know, it's, it's just, it all came together because she heard the word cookie and she said the word cookie and.

[00:20:29] I mean, that was huge. It was huge. And maybe not every parent would feel that way, but we felt that way because we knew how, how important and big of a milestone that was at the time and still to this day, things like that. You know, whether it's our kids, you know, accomplishing goals on IEP or whatever, it might be like, we know how to celebrate those because we understand how big those are for one another.

[00:20:57] And it's, it's helpful to have each other in those types of situations. So I think that, you know, we're able to just connect on that level. Can I piggyback on your, get it moment? I think the, get it moment too. And I like how you did expand it beyond just, you know, this category of kids. I think that when you put it a group of us together that get it.

[00:21:21] So. It is nice to look across the table or whatever, and be able to know that she gets it or he gets, you know, that the parent across from you gets it. I've run a lot of parents support groups for kids, with parents, with autism. And it's even though every kid with autism is different. Every single kid with hearing loss or deafness is different, we're all different.

[00:21:47] But as a parenting experience, if you hear another parent and you just get it. So it's just so nice to be heard. And sometimes you feel like an outsider as a parent. If your child is different from the norm and you don't know where to place that quite yet. So I do think that parents, the parents' support kind of helps us.

[00:22:11] It's nice for professionals to hear us, but another parent that gets it, the get it factor is huge. Huge. Not another example of that I wanted to share was the day that my daughter had to take her hearing aids out and walk by herself, down to the swimming pool without me, like really far away. She couldn't hear she's at a moderate to severe loss at this point.

[00:22:38] And I wasn't allowed to be near her. And I'm sitting on the phone texting like, Oh my God, my like I'm watching her. And so I'm texting a blow by blow of I've. There's nobody there to talk into her ear or help her. So that's, so it was like in real time support, so it can be IEP victories, but it can also be the, I don't, my husband might get upset with me if I text him one more time.

[00:23:10] So. I'm going to go to you guys. I remember that day you were at the swimming pool. So clearly too. I really do. Like, I remember getting those texts and I remember the parent, like, it was sort of a mixed thing for you. Like there was some panic, but at the same time, like there was that, okay, this is like, she's starting to feel a little independent and this is good for her, and this is healthy.

[00:23:31] And, and I think that's another way that we can kind of balance each other out too, because we can say, Hey, Maggie, we know this you're freaked out about this, but guess what it's going to be okay. Like, and we can kind of talk her through it and keep her calm enough to let the experience happen and, and sorta just soak it in and take it in.

[00:23:50] And that real time, I agree with that a hundred percent. So then I was able to share the victory of the picture of the swim teacher laying on the side of the pool with her legs, doing scissor chops, to try to show my daughter what she wanted her to do. And I was like, it's at that picture, I was like, it's going to be okay.

[00:24:14] It's going to be okay. I don't like you guys are released. You're fine. But that's, it, it gets emotional. It gets like sad too. I mean, and I think I just hit on another thing when maybe your spouse or your mom or your dad can't handle one more, more conversation with you. It's nice to talk to another person even before we were really, really emotionally close.

[00:24:38] It's still nice to talk and reach out to another person to hear what their experience was, what their thought process was. I don't want to give the impression that you have to be besties to have this situation either. It's just. It was from listening and sharing and the, get it factor that I think this can happen for people.

[00:25:00] No. I, I think that is so critical, critical that get it at moments and the blow by blows and the celebratory victorious moments I really important to have. And like you said, nobody else gets it the same way as like the example of, you know, your child says cookie for the post time and someone that does not have a child that's deaf or hard of hearing would be like, Oh, okay.

[00:25:25] But you are like, woohoo  we're getting the balloons out. We are celebrating, right. I mean, this is a huge moment. And by having that support, you can celebrate those victories too. So kind of going from that emotional part to more than knowledge part, how do you feel like being connected to each other has helped you with like getting knowledge or advocating or even, you know, your daughters being more advocates for themselves.

[00:25:54] Okay. I'll start this. So. Austin as you're familiar, Carrie, I took a very long time to get her to the point of recognizing when her hearing aids died. She's finally doing it on her own this year. And yay. That's a lot of that is the school and the team that was working with her regularly every day.

[00:26:16] But I think also some of it was seeing these other girls who are her own age, knowing when their hearing aids are that and talking about talking care of their own devices. And so she now she pretty much does it all on her own. I do help her clean them. So cause you know, she's not perfect, but it it's a big step for her too.

[00:26:40] Become more independent. And she's telling people when the FM system is not working anymore, she's advocating a lot more. And I think part of that is she's seen these girls do it when we've been out. Molly was advocating for herself and also saw it and she was like, Oh, I can do that too. So I think that was a big step for her.

[00:27:02]And so, you know, just having that for her also as far as the knowledge goes, I have a coworker whose daughter has been having a lot of problems with her ears. She's not diagnosed with hearing loss or anything, but she's had multiple tubes and surgeries and things going on. And she's been in a lot of ear pain recently.

[00:27:24] And one doctor told her mother that is just psychological and the mom was very upset. She was like, no, that's not, that's not what's going on with my kid. So I was able to reach out to these guys like, Hey, You know, this is what's going on with Vanessa's kid and you guys got any ideas who, who can, who else can I send her to?

[00:27:43]So they were able to give me some, some ideas of other things that it could be, or some testing that she could have done in other doctors for her to go see. So it's, you know, when you have questions we ask and if we don't know, we can help find the answers. Anyone else want to add onto it? That's okay.

[00:28:06] This is all good information, but other parents and professionals to hear all over the United States and beyond, I mean, I think that's, you know, the original question, what was the original question? So I make sure I zero back in, sorry, you don't have to more like increasing your knowledge with each other.

[00:28:24] So how does that help you as a parent? How does that help you a daughters to be more confident or advocates and who they are. I think that seems to me to be the stem to the ongoing cycle of who's a supporter and who is a, a learner at any given moment and age doesn't make that difference. Exactly what kind of hearing loss or deafness doesn't make that difference.

[00:28:50] But it's the ability to reach out and touch someone, you know, know that you can call a parent to ask for, have you guys heard about camps? And then I hear about one of you that knows about a camp and I'm like, tell me about that camp. I want to know. So you just reach out and you ask questions and you just get more information.

[00:29:10] And quite honestly, you know, it makes it better for the professionals sometimes too. It may make professionals a little crazy because they have parents that are talking to other parents that it makes them super advocates, but it also helps professionals not have to work so hard cause professionals.

[00:29:30] Don't really have time for beyond Saturday afternoon or Tuesday evening when my kids in swim class, it's really not their role for us to text at five o'clock at night and be like, my friend is going through this issue. What do you think? You know, it just helps dispense that  information amongst people just so much easier.

[00:29:52] So I think that, I think I just sort of went into the answer to another question, which is what is the benefit? So parents and professionals, and it's just, it helps, I think it helps professionals have a less harder jobs to do. Some of that we are so needy parents are so needy it's from their professionals that they work with.

[00:30:17] And the parent to  parent's support kind of just helps you have. More support. So your professional can be the professional a little bit, even though they're empathetic and wonderful and supportive some of this emotional stuff or just networking is really helpful for parents. So we can, we can do that a little bit on our own.

[00:30:42] I learn so much more than one professionals experience and Maggie, what you said is so true because there's been other research about other support organizations and professionals kind of being involved, but more a fly on the wall. And what they found is that professionals learn more about their own practice from being around individuals who are actually going through the process than they do from a textbook.

[00:31:10] So kudos to you guys as parents for being able to share your own experiences, because otherwise you wouldn't know that like the, you know, swimming like, okay, well, how hard is it for the coach to get out on the side of the pool and just demonstrate really quickly? Because obviously you can't see your, your legs underwater, but it's a simple tool, a trick that I can make somebody else's life easier.

[00:31:41] And so what kind of parent though, and what kind of talk it? What did I have to do to prep that teacher, that my daughter is even coming down there. Right. So then you ask your other parents, people, would you guys call, would you email? What would you do is that normal for us call should be called, you know, you're gonna go through a little bit of all that beforehand.

[00:32:06] And I love what you just said about professional as a professional in the field, myself running parent support groups has probably been a huge factor. And what kind of professional I am back in only to being the parents of my own child. Definitely. And practice kind of professional. I am, but professionals gain so much from hearing, hearing parents too, that we all need each other.

[00:32:38] We do. At parents, a parent can be really good. So I hope lots of professionals listened to this cause they're going to learn so much from all of you guys being connected. So have you found, and I think Stephanie talked a little bit bit on this, but having your kids being connected to each other, what kind of benefits have you seen in your own kids' growth or acceptance of their own hearing challenges?

[00:33:04] Anything? I was going to share yours. Oh, go ahead. Do it. I, so Tina and I had to have a very special moment right now, which is that my daughter transitioned from bilateral hearing aid to wearing a cochlear. And so, you know, before even family members, the first people I told were these three and then Tina's like gone on like speed dial.

[00:33:33] If we still had that for everything. But what was the most profound to me? So Tina and her family did everything and these whole group of girls, but Tina got more of it a little later. You would think that all the support was from Tina to me. And then I teared up when I realized that you had sent me a text, or I don't even remember what it was, where, where she said that Caelen doesn't have another friend with a cochlear or no, my daughter, Caelen said that to my daughter on a message.

[00:34:08] And I was so emotional about that. Like I was the one like receiving so much from Tina in this process, but I never, I never thought about what my daughter was like giving Caelen I'll jump in at that point. Well, yeah. The it was, it goes back to as well, even Brian Maggie's husband was sending my husband, Jeff, an email during the surgery.

[00:34:36] And I didn't know until a couple of days later and Jeffrey said something about it. So it's across the board, I family member to family member. And then Caelen had Molly and they would write each other. And I said, she would tell me that she would check in on her just to see how it was doing, how activation was giving her tips and tricks.

[00:34:55]I have, I signed Caelen up earlier with a magazine for a pen pal and that lasted for a little bit. And then they just got busy and stuff like that. So they tried to match her up with somebody to cochlear around the same age. And those connections are so imperative to them. And I could tell even recently, you know, Because of the pandemic and everything else like that.

[00:35:19] And they, she, we, haven't gone to the groups that we've gone to, right. The camps that we've gone to, or she hasn't seen her for friends to just be around them and be yourself. Yeah. Recently we went to dinner a couple of weeks ago. It was just my husband, Caitlin and I, and at the end of the night, it was a smaller restaurant.

[00:35:40] A gentleman walked by, we were talking about Molly and we were celebrating the fact that she was at 35 decibels in the booth. And we were talking about at that dinner and it was just these two tables up in this restaurant and counts like how that's awesome and we're going through it and everything else like that.

[00:35:53] And. This woman turned and said to us, she's like, are you, do you happen to be talking about cochlear implants and nobody that who didn't know a booth test decimals? You know, it sounding like a duck or whatever. Nobody would know that unless, you know the thing. And she goes, do you happen to be talking about them?

[00:36:10] And Caelen's like, well, yes we are. While her husband had gone to the bathroom and I'd been looking at the one side the whole time with nothing. And as he came back to the table, while there was a cochlear implant, turns out implanted, or they have the same surgeon now, at university, and they just started talking and joking and he, they were comparing their cochlear’s coming off on he's a machine.

[00:36:34] He works on machines and his coming off and kills like, Oh, mine does that as well. But she needed that connection, whether it's through ages or whatever, all of a sudden her soul, her little soul seemed filled just from seeing somebody like her. And being with and she left and she felt she was a hundred times better and at a hundred, like a better mood than she had been in weeks because she saw somebody that was just like her randomly out in public.

[00:37:05] So that, that connection, that kid connection is so important. And it's not just for us, but it's it's for the siblings as well. I mean, we could go on and on about the, the bond across the boards and everything else like that because the sibling connection is also special with a lot of, you know, the hearing kids.

[00:37:26] So talk about a negative. This is like super wonderful that I will say sending my daughter to camp, to see other kids. That's cool to see other kids that were on the spectrum from ASL signing deaf to mild. By bilateral hearing loss. You know, Molly came home from that first time and wasn't quite sure, you know, it, it can seem a negative.

[00:37:57] She wasn't quite sure she was liked them. And I think that, that, although that seems a negative and it, it gave me pause that time I had, but now kind of if I were to share with another parent, seeing those differences, which kind of does show that everybody is still different, that the hearing loss doesn't make you kind of like a friend or a not friend are similar or not similar, but it really can be just the connection you make or the longevity like with Austin and Stephanie's with.

[00:38:36] Stephanie’s  daughter, Austin. I feel like Austin's had to watch the girls for a longer period of time to feed that happened over time. And without that longevity D to C, it can start different. It can, it's not over yet. We don't know what that's going to look like, but we're really just embracing everybody is nobody's really the same.

[00:39:00] And yet there's this beautiful thing that I think Tina's explaining, which is, but yet there's still a beautiful thing that will happen when you feel the same. That's just life. So I think it's the nuance that can make parents, parents support positive and sometimes momentarily feel negative. I think that's my theme.

[00:39:23] Right? The first time I went to group, I cried. It didn't feel super positive, but the longevity of living this out, knowing that I could pick up the phone if I had to. And then I stopped going to parents support groups. So my kid was two and a half and she progressed, I knew these women were here and it was the professionals that reminded me.

[00:39:47] We have another quarterly group and we'd love for you to come. When I was like, ah, I don't know, I'm not ready. I don't think I have enough in common. And I put it off from very young to, we were almost three and I only came back because my kid progressed and I was like, I need these people, but knowing they were there.

[00:40:09] So as a professional, I just went a really far away. But as a, I would say to professionals to please just keep reminding your parents that there's other parents out there, because what may seem negative might not be negative. What seems positive? You know, you don't know what any parent's going to get out of it, but you do know there's these parents out here and they're willing to share their phone number.

[00:40:33] And so don't give up on them one time because it's a process that changes what was okay. Tomorrow, yesterday might not be good for me tomorrow. So professionals need to not push it, but absolutely continuously. I would think, make it available, know that parent who might say, would you mind if I shared your phone number with somebody?

[00:40:55] Because now all four of us I know have had random coffee chats with people because a professional asked us to and shared our phone number. That's okay. I love it because, well, I guess a couple of things kind of come to mind. One thing, if you go back to that learner supportive role, I can see like, you know, Caelen and Molly

[00:41:21] I mean, that's just that learner supportive role right there. And I'd be like kid way. So Caelen reaching out and saying, Hey, you know, I went through this and I have this. And I'm feeling validated that though, someone else her in that role. But you should, Tina about the restaurant I wanted to kind of go off of that one, like meeting someone, an adult who was a little bit older from your kids.

[00:41:47] Do you feel that it's helpful for your own kid to meet other adults or like teenagers or someone who's older than them? Who is deaf or hard of hearing. I'm going to jump in on that first, the only cause we do, we do go to several camps. We travel out of state and we go to a camp with a group Songs for Sound.

[00:42:10] And it is for families with deaf or hard of hearing. And they have the panels. And the last time we went, it was right before lockdown. About a week before lockdown. The last time we left the state, I think, and Jamie was her main focus was to bring in teenagers for this panel. And we sat there and Caelen and her friend, Lily did not want to move.

[00:42:35] Now I will say this other family, this goes back to parent parents support. We met and she would be in the fifth week. She would be the fifth part of our group if she was in Ohio. And we've met wonderful families from all over the country, these events, but this family specifically as well, she is just like us.

[00:42:52] And they are some of our best friends. And her and Lily sat there and didn't move for three hours while these teenagers answered the questions and everything else like that. And she kept raising your hand. I was where I was trying to hold her hand down because let other people talk. But when we left.

[00:43:11] You know, she came home from that weekend and they were only in school for two weeks, I think, before they got kicked out. But in the two weeks she learned something that she didn't know to advocate on or something to ask for. And she felt comfortable. She came home and I remember her saying, she's like, mom, I listened to what Lexi had to say.

[00:43:29] And I went to school and I asked him to repeat, repeat it this way. And she goes it worked. So those panels, those kids, whether it be a parent panel, which all of us have sat on together. And I, as we're sitting here talking, I forget all the times we've sat on whether it Kent state office at Kent state together next to each other and told our stories and cry or sat at, you know, the family center, you know, telling our stories next to each other.

[00:43:54] And it's funny how 10 years later, you forget all of these situations where we've done this and all the people we've met, the professionals, the interns, the, you know, the kids coming up with it. But. We've sat next to each other, telling her stories over and over again to people doing this. And I don't know if it ever will ever, ever stop learning, like you said, Carrie likes Nancy said

[00:44:22] Like whether it be college age or high school or we're going, or junior high level. Now most of us just having that connection and having them listen, having us listen, it's a never ending cycle being grandparents going forward. I mean, I could see that going on for years and the continuum it's extremely important that kids have access to.

[00:44:47] The old to the older generation or somebody that is like them, but they've walked the path before and they don't see something that, or they tell you something that maybe you just don't see right now, if that makes sense. I know I'm feeling it. I think you also have to follow your kid's lead and Molly wasn't as into kind of getting to know people.

[00:45:11]But now she is, and I can feel it. And I do find for me, I'm ready. Like I think she does need more older kids. Cause they, they hit the point to where I think your kids just like older kids, they think they're cool, you know, and I would love, so I look forward to more opportunities actually for her to either be around physically adults or teenagers.

[00:45:42] Because zoom is not super great for them. So yeah, but I, I feel then as somebody who might not have had as many experiences with my daughter in that regard, I do I feel a missing element at this point that I would like there to be, be more exposure to older kids or adults for sure. Yeah, no, those are all great.

[00:46:08] And I just know that a lot of the kids and middle school and teenagers that I get to work with their exposure to just say, college students and realizing, Oh, they can go to college or they, you know, have a job at wherever. And then I, I can do that too. So it just elevates their self-confidence and whatever they want to do, because they'll see someone else in that role.

[00:46:33] So as we kind of wrap up today, I wanted to ask a couple of kind of ending questions and I know we've talked a lot but kind of circling back around to that parent or parent support. So what kind of last advice would you give parents who may not be connected? And I know you've said it, but I just want to kind of emphasize again, or maybe you've thought of something else along the way about parents getting connected with others.

[00:47:03] And then I'm going to ask the professional question next, but parents first. Okay. So Tina, where are you going to go? No, I was going to tell Stephanie to take this cause she hasn't led yet to you, but Nancy, I want you to leave too. Yes. I was thinking the same thing. I was like, his stuff's going to speed up and she's staying on mute, but also we're calling her out because totally, totally called you out steps.

[00:47:26] I think you should take it, Stephanie, do it. Okay. Pressure's on. Thanks. Well, you guys were doing such a good job of talking that I just felt like I should just be quiet and let you go, you know, I'll add, I'll add to what Stephanie just said. I felt like I had to be quiet there for a few minutes. Cause I, I couldn't like compose myself to talk without crying.

[00:47:49] Like I was like getting a little too emotional and felt like I needed to step back for a minute and like, Neither myself before I took time back in. So I'm back now, but Steph take this one. So yeah, for other parents, I mean, I know a lot of it kind of depends on the area that you live in. You maybe there is not any support groups nearby.

[00:48:14] I mean, if you live out in Montana, You know, where's the closest city to you, you know, what, where are you going to get support from? So I think there, you need to keep in mind that there's a lot of different varieties of support. You don't necessarily have to have somebody that you can go and sit down at a coffee shop with and have a whole face-to-face conversation.

[00:48:35] You can have a zoom call or, you know, just text messages. I mean, we have a group text message that we just keep, you know, back and forth with. And it's not even just about the kids, it's about everything that's going on in our lives. So just having somebody that, you know, you can call or text, you know, like send them a message.

[00:48:56] Hey, can we get on a quick zoom chat? I need some advice. I need somebody to talk to who knows what they're going through, knows what we're doing. And I think just keeping in mind that there are a lot of different. Ways to get support from other parents, you don't necessarily have to meet face to face.

[00:49:12] And like Maggie said earlier, you don't necessarily have to be best friends to support each other and to understand what each other's going through. So maybe you meet one time at some convention for, you know, deaf and hard of hearing kiddos and you just trade numbers and you know, that you can reach out to that person.

[00:49:35]If you need something or just need somebody to talk to. So yeah, to piggyback on what Stephanie said, I kind of feel like technology has almost removed the. Excuse for being, for not being able to reach out for someone  to anybody. Really. I think that, you know, there are so many avenues, so between social media and just the, the internet and being able to communicate like that, I mean, like we're doing right now, like we are having a conversation using technology.

[00:50:11]We're not, you know, sitting in the same space, but we are still very much a part of the same conversation. And I think that being able to connect with people is always important. And like Maggie said, it can feel really scary to take that first step, especially if you don't feel ready. But I think that the one thing that I would encourage all parents to remember is no matter where you feel you are.

[00:50:44] Somebody out there can relate to that. And this community of people is so encouraging and so helpful. And also I think willing to wait for the moment that you are ready, but if you reach out and let them know I'm here, I'm not sure. Like, I'm not sure I'm ready yet, but I'm here. And I need someone to know that I'm here.

[00:51:10] People will, people will keep you, keep you in the loop and keep you in mind and, and continue to you know, reach, reach out to you. And you'll, you'll start to make those connections sort of naturally there's lots of online support groups. I think all of us are involved in  a lot of like Facebook communities of parents with children, with hearing loss.

[00:51:31] And you know, even if you're not. Going to be really vocal on those sites. I think just seeing all of the other things that parents are posting sometimes is even really encouraging. So maybe starting there, right. Join one of those online communities and just sorta creep for a little bit. You know what I mean?

[00:51:48] Like see what other people are posting and what other questions people other people might have. And, and then when you're ready, jump in there, if you feel comfortable and you'll, you'll find people that you can start to connect with. And it's, it's going to make sense when the time is right, but don't be, don't be terrified of it.

[00:52:08] Just start somewhere. So Nancy just sent me a picture like a couple of weeks ago that I, I totally forgot how I reached out to Nancy, which I personally went through a ton of my child only has a unilateral hearing loss for a long time. And I did not go back to support group and I forgot that I sent. Nancy and I ran into each other.

[00:52:38] This is hard to where I work is also where the infant hearing program is housed out of. And so I would see Nancy at different times on a regular basis, actually, she would drop in, in another program. And so I knew she was going to be there and I knew she would show up at certain time. And I wrote her a note saying, I think I'm ready when she sent it to me.

[00:53:07] It's like, I think I'm ready. Would we. Have coffee because I, you know, my professionals, so what would I say to other providers or other parents to make this next step? I would, I would offer that professionals professionals can really helps say these people are out there. And so when you have a good one or two or three, and you think, I think this would be a really good fit, this is a really great mom.

[00:53:38] Let them know that for parents that received those phone numbers, those names or just know they exist for whatever reason, just you don't like, I love that. Nancy said you don't have to be ready for them because clearly that was my story. When you're ready, you know where to go. So whether that's creeping on social media and you happen to love this one person's responses for everything, that's probably the person you're going to private message.

[00:54:07] You know, we were a little bit more old school and I ran into her and gave her a note. So to get more comfortable, I don't even know if Stephanie or Tina know that I forgot. I totally forgot. It's like, but that's kind of shows you where all as parents in a different place at a different time, and we just need to know those places are out there.

[00:54:29] And then when you're ready, you'll put it. It means you're going to be vulnerable to be open, to make a new best friend. It just means you're being vulnerable to be open, to ask a question about your child, which is super vulnerable. Or to ask somebody else about their child. There's an intimacy there that I think people might be uncomfortable with.

[00:54:53] So whatever way makes you feel the most comfortable, it's, it's an intimacy that can support your decision, making your problem solving, even if hearing another person's story makes you feel like, no, I really do love this. Do you want, okay. So know that if you don't want to do it, it's not time that there may come a time.

[00:55:17] So keep that phone number. So just to kind of wrap up, is there anyone that wants to say any last minute words of wisdom I'm going to, I wanted to piggyback on that last one, too. And this probably ties into words of wisdom, or I wouldn't say wisdom, which is just being a parent. Like we said, you know, putting yourself out, they're looking at the social media, having the access to other parents or other families.

[00:55:45] And, you know, that's important for professionals to realize as well that they have to be willing to listen and listen to their families and they want, and I think that's very important for this field because there are so many different opinions on everything that it's what the family wants. And what is that?

[00:56:05] Families don't know what a squat is, what is best for the family? Because every family is different. We've said it, Stephanie said from like Montana, like that's a different, you know, Kentucky's a different area. All of Ohio is different. You could be in one part and then another County has a different system or set up different support groups, parents systems out anything.

[00:56:29] It's so different. And one story is not the same as another story. And I'm also going to say it as a fam, a family where my child, it was, she was different. And I remember sitting on support groups and not, yeah, I line and not joining it or anything because a lot of it could be, you know, it is great.

[00:56:48] It's the, my child said this, or everything's great when you do this, but there are people behind the scenes where it's not the same and things aren't like, great, or it's not working the way it should or something was. Didn't go right in surgeries or anything else like that. And so there are other, are those people behind the scenes as well that they need the support.

[00:57:10] They just don't know how to go about it because they're not the typical path as well. And so I would say to those families, there are people out there that are listening and other families behind the scenes. It's just, it's going to be the connection through the professionals, through the audiologist, whether it be the educational or the clinical or the speech therapists, or, you know, earlier in early intervention, whatever it is right now at this time it's going to be up to them to be able to provide the initial contact.

[00:57:41] Like we had going forward and make, I think that you've discredited yourself. Cause I think you forgot that the coffee chats that we've held as well early on. And that's probably how we really got to know each other. And I think Nancy and Stephanie were pregnant at the same time. And then I remember being in another support group down in Akron and Stephanie telling us she was pregnant with Casey with the third.

[00:58:04] I think all of it major moments, whether it be Maggie, myself, you know, our moms are sick and at the end and everybody jumping in or camps or, or moving anything, it is always been like at these parents support groups or on our group chats, which it can easily go from one Texts to, a hundred texts in five minutes.

[00:58:28] So. But it is, it's imperative that the professionals provide those contacts or access is its access to the contacts because parents might not want to take it, but at least there's access to different different people in different health groups. So I, we are really going to talk for five hours, Carrie.

[00:58:50] I do, I do want to add to something that Tina said, it triggered something that I think is really important. You know, for everybody here. So we all are hearing parents and we all have both hearing children as well as, or typical hearing children, as well as children who are hard of hearing. And I think that these support groups are equally important for those siblings as well.

[00:59:18] I, I think, you know, my son, he even has met some friends through some of these communities. And I think that there's a lot that they can learn as well. And just, and then there's a lot that they can teach as well, too. So I think that also just knowing, you know, Tina is saying that it's a family, a family affair, really, and it is, it truly is.

[00:59:42] There's a lot of connection there for not only the parents and the child that has the hearing loss, but the siblings as well. So I think that's important to consider as well for people who are thinking about or teetering, should I, or shouldn't, I it's, it can be a lot bigger than just making that connection from one parent to another parent.

[01:00:06] It's truly making that connection from one family to another family. And in some instances, Good luck, Carrie, with all these themes. Just good luck, but I'm just going to say whatever I want to say. Like, yes. So shit, I think about just try, you will never have four people again, you're going to do so much editing.

[01:00:28] Okay. I agree with everybody and yes, I think, I think what's important to note. And this is where I do think my professional place makes me see this one piece really big. When I watch parents of children with autism, there is no one child with autism that is the same, and it's a very similar community.

[01:00:50] And that there is a very diverse, long continuum of how to support your young child with. That might have a diagnosis of autism. It's a similar field here. And I think that what I have learned professionally from listening to my parents in the autism community that I work with is that it's not about maybe what anybody chooses do moving forward.

[01:01:22] It is so much about the, get it factor that another family looks at another family in the eyes. And even though at first, all I saw day one or that one day was what was different and that's really common. You can see so clearly what is different about us, but. Over time and just kind of listening to another person's story can make you start to see what's similar.

[01:01:50] And that is that families are families and we're all different, but we all are to quote maya Angelo. We are all more alike than unalike. There are common themes that you'll always find with just special parents of special needs children. And then as we move into just parents of kids with that are hard of hearing or deaf, there may be a wide continuum of how we treat them or how we decide to move forward or what their families look like.

[01:02:22] When yes, we all four have a lot of similarities in our and our family. And that is maybe what helps us, but we also have all four of us to come in contact with other families and seeing what is different is also so. Hopeful to my parenting process. So there's beauty and finding your tribe and what, and all the similarities.

[01:02:50] And there is still beauty in finding a tribe that has some differences too, but you still learn from it. So we're more alike than not alike. We all have [01:03:00] common themes and we all take what we need and we leave the rest behind. Wow. Great. No, I love that. I think that sums up this conversation so well with and I w first of all, I want to thank all of you for being on this podcast, because I know that this conversation is really going to help.

[01:03:22] Professionals it’s going to help other parents. And I hope parents who are not connected yet will be inspired to either get on a little Facebook, creeping and find somebody that they can connect with either privately or on a Facebook group, or do a coffee chat or whatever. And I hope our professionals out there recognized just from this common conversation that get it factor and that get it factor is so important in making sure that families are connected.

[01:03:52] And if they're not ready, that's okay. That they plant the seed and they circle back around at different appointments because at some point in time Parents will be ready. And that's the important part. So again, I want to thank all four of you guys, but being EmpowEAR audiology podcast, and I have followed all of our listeners out there.

[01:04:13] We have a Facebook page, so feel free to follow that and engage in the conversation. And thank you again.

[01:04:23] This has been a production of the 3C digital media network.

Episode 18: EmpowEAR Audiology - Dr. Marc Brennan

[00:00:00] Welcome to episode 18 of the empower ear audiology podcast with Dr. Carrie Spangler.

[00:00:17] Carrie Spangler: [00:00:17] Welcome to the empowEAR Audiology podcast, which is part of the three C 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 your own challenges and those who want to be inspired.

[00:00:46] Thank you for listening, and I hope you will subscribe and 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 on the empowerEAR audiology Facebook group transcripts for each episode can be found at. www3Cdigitalmedianetwork.com under the empowerEAR Audiology podcast tab.

[00:01:19] Now let's get started with today's episode. All right. Let's get started with today's episode of empowerEAR audiology. I'm really looking forward to interviewing a guest that was actually recommended by a mutual friend, Dr. Ryan McCreary. And I'm going to tell you a little bit about my guest today. 

[00:01:41] Dr. Marc Brennan, Dr. Brennan graduated from the university of Wisconsin, Madison with his bachelor's and master's in communication disorders. Followed by his PhD at the University of Washington, he completed both his clinical fellow and post-doctoral fellowships at Boys town. National research hospital research interest involve examining the relationship between high-frequency amplification and the perception of speech and between compression amplification and the perception of temporal and spectral cues.

[00:02:17] Today, I'm not only excited to learn more about his areas of research and study, but I'm also looking forward to Dr. Brennan's journey, living with hearing loss. So by storytelling and sharing hearing journeys, I hope we can empower all of our listeners who may also be on this hearing journey. So Marc, welcome to the podcast.

[00:02:39] Marc Brennan: Well, thank you. I'm excited to be on here.

[00:02:43] Carrie Spangler: Well, thanks for joining. And I want to just thank Ryan, but how can I stop saying you guys need to meet? So it's always fun to have just kind of a first meeting on a podcast and just kind of learn [00:03:00] more about each other. But Ryan had shared that a little bit, that you actually have a hearing journey growing up.

[00:03:08] Do you want to share a little bit about that?

[00:03:10] Marc Brennan: Yeah, I'd love to. So I was diagnosed with a hearing loss about the time that I was four. This was, you know, before we had national hearing screenings. And so they didn't find that out till I was about four. It's kind of an interesting story because I.

[00:03:29] Once in producing as much speech, you know, as, as they expected me to. And I was actually in like, Oh, like a preschool for kids with children with disabilities. My mom really thought that I had a hearing loss and you know, you hear those kinds of stories where parents attach to that hearing loss idea when their kid doesn't really have that.

[00:03:52] But in this case, she was right. And the nurse actually said you know, He didn't respond to all the beeps, but he's just been really difficult. And I can be difficult, but you know, in this case, I, I really did have a hearing loss and luckily she took me to an audiologist and I got diagnosed and then fit with hearing aids shortly after that.

[00:04:20] And I don't really remember any of this. It's all, you know, stories. Told to me, but I guess like, My mom said when I first got them, I just kept talking about all this stuff. I could hear, like, you know, the car. And so for me, it's, I've always loved being able to hear. And I I cannot stand to go without, you know, having my hearing aids except at night, you know, but yeah, I, I, I just really liked them.

[00:04:52] Yeah. The other thing I'll add is my. Younger brother. He has the exact same hearing loss. It's we probably, I think it's, we've never been tested, you know, like genetically or anything, but I would guess that it's a recessive gene just because of sort of the lack of a family history there, and none of my kids have it.

[00:05:13]But he has Asperger's and he has. the exact opposite reaction. Like he does not like to wear them. He takes them out all the time he fiddles with and I am not his audiologist He is a non-family member.

[00:05:36] Carrie Spangler: Yeah. You are just his big brother that yells at him Right.

[00:05:40] Marc Brennan: Well, yeah, I mean, I've tried everything I've tried at all. I've tried to be nice. I've tried, I mean, not really yelling at them, but being from it's adjusted the gain, you know, everything a lot of it's. Actually I think just a physical, like it just doesn't physically want it there.

[00:06:06] Carrie Spangler: You said you were diagnosed at four. And actually that was when I was diagnosed too, with my hearing loss and similar kind of thing. My mom kept asking doctors, like, I think there's something wrong with her hearing and they would clap their hands or do something. And I turned and they would say, she's fine.

[00:06:27] So, and again, before newborn hearing screening, so we didn't have all those safety nets in place. Right. You mentioned that you were in like a preschool program for children with different challenges. So what was your elementary school? Like?

[00:06:48] Marc Brennan: I was mainstreamed. I grew up Manassah Wisconsin, and then Neenah, Wisconsin, and not to smaller towns, but they're smaller towns and I, I didn't know anyone else.

[00:07:02] You know, with the hearing loss. And yeah, I was in regular classrooms. I did well I could hear, okay. I always sat at the front of the classroom up until like high school, you know, maybe junior high, and then you want to be cool and, you know, sit in the back. I can remember my audiologists every time I go in, he'd talk to me about, you know, using an FM system and I never wanted it a which I know is not ideal at all and not what I recommend, but but but at the same time, I mean, I think I've turned out okay.

[00:07:46] Carrie Spangler:  Well, you got your PhD, so you must've been educated somewhere along the line. So you said that you don't recommend that now not using an FM or DM or whatever you want to call it. What do you utilize any assistive technology system

[00:08:04] Marc Brennan: Now?

[00:08:05] I really don't. I mean, there was interesting to listen to some of your podcasts and I want to be really clear, like my experience doesn't, you know, translate into everyone else's experience. Although I do think. For a lot of adults with hearing loss, they really don't. They don't want to deal with these assistive devices.

[00:08:27] And I kind of fall into that same camp, like I've tried them. I wear Oticon hearing aids right now. I've tried other ones, but For me, it was just the, like, for example, these ones I can, you know, set them with the telephone. They're not Bluetooth. So I, you know, I have to wear that connect device and.

[00:08:51]I'm just not gonna wear that all day. Like for the few times that I talk on the phone, you know, and nowadays it's like, never because everyone just, you know, text.   I've, I've tried out hearing aids you know, with Bluetooth and it's nice. Like to connect the phone, although sometimes that's annoying.

[00:09:12] Cause like you get, you know, the text messages come through, like you're talking to someone and all of the sudden it, you can't hear, you know, so I don't, I don't know if I owned a pair how much I would use the Bluetooth. I mean, I think I would use it. I just I don't. No for sure how much I would

[00:09:32] Carrie Spangler: [00:09:32] stream my podcast if he had

[00:09:35] Marc Brennan: [00:09:35] Bluetooth. I was, yes, I absolutely was.

[00:09:42] Carrie Spangler: [00:09:42] So growing up or even now with living with hearing loss or hearing challenges, do you feel like you have a challenge? Like what would be your greatest challenge?

[00:09:55]Marc Brennan: [00:09:55] Socially distance. Although we tended the, you know, people always like to sit in the back of the classroom and audiologist, audiology students are no different.

[00:10:06]You know, so I find myself constantly, I feel like frequently asking them to, you know, speak louder and stuff and which I hope. Maybe that's a good experience for them cause right. If someone has a hearing loss. I've got to learn to speak up. So that, that's actually one of my bigger bigger challenges that I haven't quite, I usually turn up the volume on my hearing is when I teach and that helps I don't know, maybe I need to do a little more.

[00:10:37] Letting them know, ahead like I had a time and stuff, but they need to do

[00:10:42] Carrie Spangler: [00:10:42] right. Be an advocate for

[00:10:45] Marc Brennan: [00:10:45] audiology students.

[00:10:49] Carrie Spangler: [00:10:49] They can better serve their patients

[00:10:51] later

[00:10:51] Marc Brennan: [00:10:51] on. Right. I know I'm just, I'm on.

[00:11:00] Carrie Spangler: [00:11:00] So I, it sounds like you got through school pretty well and, you know, kind of overcame a lot of those different communication challenges, but do you feel like your hearing loss gave you any additional strengths?

[00:11:18]Marc Brennan: [00:11:18] I don't know. Yeah. I think, I mean, you, you deal with these challenges. Right. And some of the strengths that it's given me is I think.

[00:11:28] I've tended to rely a bit more on myself than like the teacher. I think, I think sometimes even though I think I'm hearing, okay. I think I, I probably tend to zone out and stuff because maybe I'm not hearing as well as I think I am. And so I've always relied more on like the book material and stuff like that.

[00:11:51] And that might just be. You know, it's hard to know, right? Like if I didn't have a hearing loss, would I have done that anyway? Or, you know, is it because of the hearing loss, but I think that's helped me because I think self-learning is, you know, it's a good thing. So in that sense, Relating to patients, I'm sure you've experienced this cause you can.

[00:12:15] So to give your own stories, I think it lets you be empathetic to some of the challenges, you know, that, that your patients are facing. Obviously I got into this field and part. You know, because of my next

[00:12:30] Carrie Spangler: [00:12:30] question, actually, did this have anything to do with your chosen field?

[00:12:38] Marc Brennan: [00:12:38] What's interesting though, is actually, I started in engineering and I hated calculus.

[00:12:44] I love math. And then I took calculus and I was just like, Oh, I hate this, which. It doesn't mean that I would have hated engineering, but nonetheless, then I went into business school and I was like, I don't want to sit in front of a computer all day. So, so then I, I mean, I honestly, I didn't really think of that.

[00:13:05]Until then, and then I ran with it. I, you know, I started taking the classes and I loved it when, as far as to get my PH D with it know but yeah, I, you know, I actually went through a similar journey that a lot of students who. Don't have any experience with the field go through sort of, you know, stumble upon it, I guess.

[00:13:28] Carrie Spangler: [00:13:28] Did you have anybody like an audiogist growing up or that kind of planted a seed for you?

[00:13:36]Marc Brennan: [00:13:36] I can't, I don't know that they ever talked to me. I don't recall that. I mean, I loved. You know, I went, I saw like Jack Kyle at the University of Wisconsin Oshkosh. Yeah, I can't, I can't recall them doing that well,

[00:13:55] Carrie Spangler: [00:13:55] that's good.

[00:13:58] I mean, yeah, that, [00:14:00] I, I guess I might, in my experience, I honestly didn't. Initially, I kinda thought could a person with hearing loss go into audiology. And then thankfully I had some wonderful mentors along the way that encouraged me to keep it going in that, that, way,

[00:14:20] Marc Brennan: [00:14:20] I mean, I did talk to the audiologists that I had worked with growing up.

[00:14:26] Before going into the field. And then and then while I was in it a and they definitely, you know, encouraged me and they didn't think I wouldn't be able to do it or anything like that. But I don't think the idea came from them, which, which is probably normal. Right? Like you don't. Talk to every one of your patients that has a hearing loss and be like, you should go on audiology.

[00:14:52] Carrie Spangler: [00:14:52] No, there's a couple of them that I would be like you wouldn't make a really good audiologist, but not every single one. And some of them are like, there's no way I want to do that. I think that's something to think about to you. But kind of going into audiology and getting your PhD. Did you ever have any roadblocks along the way, as far as hearing or classes or anything like that?

[00:15:24] Marc Brennan: [00:15:24] I mean, I've definitely, you know, had roadblocks, but I don't think they were like hearing related. I mean, I think writing's hard doing research as hard, you know, those kinds of roadblocks like that come with the field. But I, I wouldn't Personally, I don't think the hearing loss was, I don't want to say that it wasn’t a factor.

[00:15:48]Like sometimes I wonder, well, would I be a better writer if I, you know, didn't have the hearing loss? I I don't always know when to use like the plural, like the “s:. I honestly, I think I kind of grew up, you know, Thinking it was sort of optional or something. And I've become more aware of that as I've got, like, even though I know what the rule is that I, it doesn't, I still add “s” where I'm not supposed to.

[00:16:20] And I think I do the same thing in speech. You know, like have you run into that? I mean, I, well, I

[00:16:28] Carrie Spangler: [00:16:28] know that. Growing up and with my hearing aids, I never heard the “s”. So the “sh” was kind of there sometimes depending on the environment. So yes, I would say the same thing. I think I learned it more, what you just said about reading and I was an avid reader growing up and I think that helped a lot of.

[00:16:55] When I did hear, I was like, I could fill in the gaps that way. So that was helpful for me. But then the other problem I had was how things are spelled in English. Aren't always the way they're said. So then I'm saying things the wrong way, because I didn't hear them, but I read them.

[00:17:19] Marc Brennan: [00:17:19] Yeah. It's interesting.

[00:17:20]My spelling is atrocious like it is. And then with now that everything's spelled checked, so I've started turning spellcheck off to force myself to like spell words correctly because. My spelling was not good to begin with. And then when you don't have to spell, you know, like I, I think my skill has gotten even worse.

[00:17:47]Yeah, so I I've turned it off, which. Which means that I have to be really careful on make sure that I run the

[00:17:55] Carrie Spangler: [00:17:55] spellcheck, edit multiple reads through your papers. Well,

[00:18:00] [00:17:59] Marc Brennan: [00:17:59] I still run the spell check. I just, I don't like have it automatically changes the words and stuff like that.

[00:18:07] Carrie Spangler: [00:18:07] So on your final draft, you're going to run the spellcheck and all that good stuff.

[00:18:13] Yeah. So something else that you mentioned in your bio was that you've served on several different boards. Can you talk a little bit about the boards that you served on and how you think your personal experience contributed to being on those Boards?   

[00:18:30] Marc Brennan: [00:18:30] Yeah, so I I've served on a couple of boards, two that come to me.

[00:18:36] Well, Hands and Voices. is one of them. And then I was on the Nebraska commission for the deaf and hard of hearing. There's a couple of things. I mean, obviously having a hearing loss and then having grown up with one helped and contributed to those experiences, one of the things. You, I became more connected, I guess, with individuals of the deaf and hard of hearing community.

[00:19:03] And especially those that had like a different experience than me. Especially individuals that were a part of life, the Deaf community. And so I started to hear more stories about some of the challenges that they had faced, especially when like hearing aids didn't work for them. You know, difficulty finding jobs stuff like that.

[00:19:27] So I think it was, I mean, obviously you learn about these things, but through some of this experience, I had more, you know, personal connections with that. And, and I also came like, I don't sign at all. I know very few signs. My wife signs way better than I do. And I don't think, you know, sometimes I wonder if the hearing loss has hindered my ability to learn languages.

[00:19:55] I don't know, but like it's not like sign language is any more natural for me than learning Spanish, for example. But anyway, you know, so there were those communication barriers because. You had, you had to have someone available to sign. And often there were people there that were signing, but there's a barrier there that, that still happens.

[00:20:19]So I, I think that there is actually like a good educational experience, I guess, for me.

[00:20:28] Carrie Spangler: [00:20:28] Yeah. So you said, I know you said growing up, you were kind of the one and only you didn't know anybody else in your community that was like you, did you meet anyone later on that you could connect with? That was kind of a mentor or someone else that had hearing loss?

[00:20:49] Marc Brennan: [00:20:49] I, you know, most of my peers. You know, it's interesting. I feel like there's a lot more students [00:21:00] nowadays that have a hearing loss, or at least we're running into that, having that at UNL, which is great. I, I did, I remember at Madison, I. You know, talk to a couple of people about hearing loss and like gave some, they did a little, I had people get together for students that were new to the university to, you know, trying to learn how to navigate that.

[00:21:29] And so I came and talked and about my experience and stuff like that. But. No, I didn't have, like, you know, I know a lot of people I've had like sort of, you know, personal mentors and I've certainly met people along the way that had like shaped my experience and stuff like that. Yeah, no,

[00:21:50] Carrie Spangler: [00:21:50] it's just interesting how different people connect, but I'm sure, I mean, working.

[00:21:57] I don't work at a university anymore, but I still [00:22:00] take students and we 've seen a growth of AUD students who have wanted to go into the field because of their own personal journeys. So it's been kind of I love being able to be a mentor to those students and just different questions that they have about getting into the field.

[00:22:24] Marc Brennan: [00:22:24] Yeah, I think it's great. And yeah, I don't know if historically people were. Scared to go in because they didn't think they would be able to do it or something. I'm not sure.

[00:22:37] Carrie Spangler: [00:22:37] Yeah. I mean, I think a lot has changed over the last few years is which is kind of gets into my next question about I wanted to know a little bit more about your interest in research with hearing aids and frequency Whatever transposition.

[00:22:56] Marc Brennan: [00:22:56] Yeah. That you know, I love research. I'm a huge proponent of research. I always, even in talking with my patients, I always talk about research. I mean, I always do it and I don't, I don't get into the nuts and bolts with them obviously. But but I'm a big fan of trying to model the practice on, you know, what's been shown out there.

[00:23:22] I remember listening to my friend to Ryan McCreary and he was talking about, you know, technology level. And I actually just had a talk with my students today about that and went through all the literature and basically showed them how we don't have good evidence, that the more expensive hearing aids result in better outcomes.

[00:23:43]But yeah, in terms of my own stuff, frequency lowering pretty interesting because, you know, with that, you're taking these high frequency sounds and lowering them to a lower frequency where presumably there's, hopefully there's better audibility. There might be less damage to the auditory system in that region.

[00:24:03] And, and we've used a fitting procedure that. Josh Alexander at Purdue university developed. And we've found that it, that it can help, like, you know, it definitely can lead to improve speed recognition. And so, so that's something that I think is really cool and. I recommend it for my patients.

[00:24:26]What's interesting is I don't wear it myself. I'm not, and the only reason it's not because I don't like it. So at that time, That I was, you know, trying to figure out what hearing is to get the particular company that had, you know, the frequency lowering. I didn't like their hearing aids.

[00:24:50]So that was the only reason

[00:24:54] Carrie Spangler: [00:24:54] I think they always. Well, I do have frequency lowering in mine, but this was like years and years and years ago that I tried something and I cannot remember what the name of the company was, but it. Was very aggressive frequency lowering. was, it was a lot, and I tried it for a bit of short amount of time.

[00:25:21] And but I think it was just too much, I think, 1000 all the way down to 250 and 500, like from 1000 to 8,000 and kind of put it on top of the lows. And I, I don't remember what it was.

[00:25:38] Marc Brennan: [00:25:38] I wonder if there's a AVR song.

[00:25:40] Carrie Spangler: [00:25:40] That's what it was. Yes.

[00:25:42] Marc Brennan: [00:25:42] Yeah. I have a colleague that, I mean, that was what she wore.

[00:25:48] She loved it. She wouldn't wear anything else. I don't know what she's doing now. Cause I think they're out of business, but Yeah, but yeah, it was very aggressive. So

[00:26:00] Carrie Spangler: [00:26:00] I definitely, like you said, I had audibility to different sounds that I never had before, but it was, it was too much. So I think it's come a long way and frequency lowering to be more patient friendly.

[00:26:17] Marc Brennan: [00:26:17] Well, yeah, and I think you've hit on a key point, which is that it has to. It has to improve audibility, but it can't cause too much additional, you know, distortion, it needs to be usable. And I think if it's set correctly, it's not noticeable by most people. Like they don't. Even though it can improve speed recognition, that it doesn't have a huge effect on the sound quality.

[00:26:44] Carrie Spangler: [00:26:44] So. Do your research, do you find that you recommend that over across the board or are there certain hearing losses or frequency ranges that you've recommended for it?

[00:26:59] Marc Brennan: [00:26:59] So I think I, I kind of recommended across the board, actually. I know that's. At all contrary to, you know, what's generally recommended out there.

[00:27:11]You know, my take on the research literature is that very strong settings are bad. So if, if you're applying a lot of frequency lowering to someone who doesn't really need it, then that's going to. Degrades speech recognition and sound quality, but if you applied just enough to make it audible, but, but not too much Then my take is that either it's better or it doesn't really make a difference.

[00:27:41]And so I'm okay with that. Like if let's turn it on and hopefully it makes it better, but as, as long as we're not, you know, making things worse, I know there's some data out there that. People with a more severe hearing loss, might benefit more, we actually have one study where we found the opposite. Although I would say that most studies tend to find that the more severe, the more you benefit.

[00:28:06]So I would guess that in general, the more severe, you know, the more you get benefit, but I don't know that there's conclusive evidence on that. And so that's why I tended. Recommend it for everyone.

[00:28:21] Carrie Spangler: [00:28:21] So based on your research, do you have anything that you wish or that you can see in the future? That would be helpful?

[00:28:33] Marc Brennan: [00:28:33] Oh, man. I mean, I wish.

[00:28:41] You know, I struggle like actually in quiet situations, I feel like if I go to a restaurant or a bar. I personally hear. Okay. Because everyone's talking loudly and I don't struggle that much in those environments. Plus we tend to be closer, you know, because of the environment. And so I feel like I, I do pretty well.

[00:29:10] It's those quiet environments. Like, you know, like when I'm teaching, the students are far away, they don't raise their voice. I'm with a group of friends, you know, we're in a living room and, and people aren't talking very loud, that's for a struggle. So honestly, I, something that would like deal with that, whether it's the ability to get more gain out of my devices without feedback Everyone walks around with a microphone that automatically connects to my hearing aid and you know, and I don't have to.

[00:29:49] Like deal with it. Like it just knows maybe a hearing aid that can read my mind, you know, I know  possibilities are endless, right?

[00:30:02] Carrie Spangler: [00:30:02] Yeah. Now I think technology gets smarter and smarter every day, but sometimes it's not smart enough to read your brain yet.

[00:30:13] Marc Brennan: [00:30:13] Not there yet

[00:30:16] Carrie Spangler: [00:30:16] think it is too. Is there anything that I didn't ask you about, you know, about your personal journey that you want to share?

[00:30:29] Marc Brennan: [00:30:29] Sure. You know, one thing that I thought of before we got on this podcast was. When, when I was a kid, like I used to tell people, things like that, I had super hearing, like an, all I had to do was turn up my hearing aid and then I could hear better than normal, which was not true at all. But as a kid, I believed it and you know, and my friends believed that and the other thing I would do is whenever the fire alarms went off, I'd take my hearing aid out and there'd be like, ha ha, you gotta listen to this.

[00:31:08] And I don't. So I do think there's some truth to like how we frame hearing loss and how you choose to look at it. And I think yeah, I've, I've had my struggles and I think sometimes I overlook those, you know, struggles, or I sometimes you don't know it because what you're missing you don't right. You don't know necessarily.

[00:31:32] But I think having that sort of positive outlook to, and thinking about those. Like advantages that having a hearing loss has like are a good thing. Like, like when I was counsel, when I counsel my adult patients on sometimes like, you know, sometimes not hearing, it's kinda nice.

[00:31:51] Carrie Spangler: [00:31:51] It's okay.

[00:31:57] No I think that's a really great point. Is it really does. There's definitely going to be struggles, but those struggles with anything, but however you look at those struggles and make it positive is important way to look at it. Yeah. Yeah. Well, I want to thank you today, but coming on and sharing a little bit about your story and about your research and what you have been through.

[00:32:28] And again, thanks to Ryan for introducing us.

[00:32:33] Marc Brennan: [00:32:33] Yeah, thank you. And it was fun and I've enjoyed listening to your podcasts. And as soon as I get Bluetooth, I'll listen to them too

[00:32:44] Carrie Spangler: [00:32:44] the technology advantages are endless, and they will continue to be. Yeah. All right. Well, thank you again. And thank you listeners for listening and tuning in to the empowerEAR audiology podcast.

This has been a production of the 3C digital media network. .

 

Episode 19: EmpowEAR Audiology - Dr. Angela Alexander

Announcer: [00:00:00] Welcome to episode 19 of EmpowEAR audiology with Dr. Carrie Spangler.

Carrie Spangler: [00:00:16] Hi, everyone. Welcome to the empowerEAR audiology podcast. I am really excited to introduce this podcast with Dr. Angela, and I hope you enjoy this conversation as much as I did about auditory processing and auditory processing deficit. Dr. Angela has so much personal and professional knowledge to bring to this topic.

And I think you're just gonna feel her passion and purpose come through. When you listen to this podcast conversation, Since we have had this conversation a couple of weeks ago, I wanted to let all of you know that Dr. Angela has just released her own podcast called Between Two Ears. And she's also active on clubhouse, the social media app.

And you can join her moderated conversation on Monday nights in the room, talk nerdy to me. So again, I hope you enjoy this conversation with Dr. Angela about auditory processing. All right. Welcome everyone. Let's get started with today's episode of empowEAR audiology.

I am really excited to introduce our guest today.  Dr. Angela Alexander. She is a doctor of audiology and she graduated from the university of Kansas in 2010 with a doctor of audiology. She has a passion for the treatment of auditory processing disorders. Angela was privileged to have been mentored by Dr. Jack Katz, who is a world leading expert on auditory processing disorders.

She worked with Dr. Katz for seven years, between 2004 and 2012 in her knowledge and expertise. Now Angela works as an audiologist in Australia. She has what is called the auditory processing institute. And she's looking to train her peers in the skills needed to provide effective APD diagnostic and therapeutic  options.

She aims to double the number of SLPs and AUD professionals providing effective auditory processing services through the app online APD masters course by 2022. Welcome Angela to the podcast. And thank you for being here.

Angela Alexander: [00:02:44] It is my pleasure.

 Carrie Spangler: [00:02:47] I'm really excited to have you today that you won't be the first person that I have on the podcast of what you're talking about, auditory processing, so I'm really excited to have you!

Angela Alexander: [00:02:58] Well, congratulations on finally talking about the most interesting stuff.

Carrie Spangler: [00:03:03] Well, it was bound to happen sometime. So I'm so glad that you are here. And I just wanted to say I'm so excited that we got connected on an online platform.

Angela Alexander: [00:03:15] Yeah. Who saw that coming?

Carrie Spangler: [00:03:18] It's so amazing how I could meet someone on the other side of the world and through a closed Facebook group and then clubhouse as well.

Angela Alexander: [00:03:27] That's exactly right. Yeah. It's amazing. I love it when social media does good things and meeting you is one of those good things.

Carrie Spangler: [00:03:39] Yes. So I just knew when I heard you talking on clubhouse talk nerdy to me a group, and you had so much passion for APD. And so I knew I needed to immediately reach out to you to see if you would be a guest.

And here you are. So thank you for being here all the way from Australia. Early in the morning where you are, late in the evening for me here in the United States. But I thought before we kind of take a deeper dive into APD, I would love to ask you, how did you get involved in Audiology?

Angela Alexander: [00:04:17] Oh, wow. So when I was born, my mom was a home healthcare worker. She would go, she's a nurse and she would go to different homes to make sure that the children were like developing appropriately. And she noticed that I wasn't responding to sound. So she she took me, she had an audiologist come check me out and you know, this is back in the 1980s. And they noticed that  I wasn't startling and I just wasn't responding in ways that she thought were typical.

Fast forward and I had audiograms constantly done when I was a kid. There were some complaints that I wasn't paying attention or I wasn't following instructions. And so they gave me a diagnosis of ADHD. So now looking back on things, I wonder if I may have had a bit of auditory processing disorder. I had been specializing in APD for about four years before I really realized that it probably applied to me as well.

So I'm wondering if I had, yeah, some processing difficulties growing up. I've been able to achieve, you know, fairly well, but I wonder if that could have been easier sometimes.

Carrie Spangler: [00:05:40] Yeah. I'm sure. So you kind of have this personal connection to your professional drive and passion.

Angela Alexander: [00:05:46] Yeah. One of the regrets that I have is not having an APD evaluation prior to getting started with this work.

With the courses that I run online, the very first thing I do for an audiologist is I put them through the central test battery. That's Jack Katz's battery of tests for auditory processing disorder. So, I run a test over zoom, and we check what an audiologist’s processing looks like. And you'd be surprised how many audiologists actually have difficulties with auditory processing disorder.

It's amazing.

Carrie Spangler: [00:06:24] Yeah. Well, it's definitely an important topic to explore and I'm excited to explore it today with you. So before we go a little bit deeper, I just want to ask, how did you end up in Australia too?

Angela Alexander: [00:06:37] My husband and I moved New Zealand 10 years ago, and we love New Zealand. In fact, a majority of my close friends live there.

But New Zealand is colder than Australia. Like it's cold at night and you know, we love the ocean. Right now being in Australia is a really nice blend of the USA and New Zealand. You get kind of like the New Zealand culture, some cultural components of New Zealand, and then commercial aspects of the U.S. It's a really cool a place to live. We live on the sunshine coast, which is, I mean, if you look at Australia in comparison to the us, it's like, New Jersey area.

Carrie Spangler: [00:07:24] I got ya. I have a picture in my head now.

Angela Alexander: [00:07:28] Yeah.

Carrie Spangler: [00:07:30] Oh, wow. So that's exciting. Maybe someday I'll get to visit you all the way in Australia.

Angela Alexander: [00:07:36] Hey, the spare bedroom has the bed made and ready to go.

Carrie Spangler: [00:07:43] How did you really, I know you kind of touched on it, but what kind of drove you into really diving into APD?

Angela Alexander: [00:07:51] Oh, so it was 2004, April of 2004. And I was in my last semester of undergrad, and I had bowling class. Right after bowling class was my speech perception class with Dr. Sarah Ferguson.

And I wanted to bowl one more game that day. And so I was really late to my speech perception class. When I got in there, I looked up and there was a man teaching and I thought, oh no, I didn't realize we had a guest lecture. There was only one seat left and it was front and center of the room. So I went and sat down and I tried to figure out what this guy was talking about.

And he was talking about auditory processing disorder, and it blew my mind like. I, my eyes must have been huge, because it felt like I was learning about something I had always known. And I didn't, like I said at the time, I didn't realize the relevance to my own life, but I just couldn't believe it.

And at the end of the lecture, I went up to him and I said, I have got to see how you test for this, how you treat it, because I cannot imagine it. And he said, come to my clinic any time. I work in Kansas City, and I said, sweet, okay, let me email you. And he was like, okay, it's my name@buffalo.edu. And I said, what's your name?

And he said, my name is Jack Katz. And here I'm like holding his book and I'm like this guy. Right. But if anyone knows Jack Katz, you know, he's humble, he's kind, he's hardworking. I mean, he just turned 87 last month, and he's still working clinically. All right. So I think a lot of people don't realize the level of ingenuity he has built into his evaluation and treatment methods.

Like you see a client you're able to categorize the difficulties. They're having you do a test, and then you can categorize the problems on the test. And then you treat based on those different categories. It's like, I cannot believe what an ingenious set up he's made. And he just, I think that, I think that the profession of audiology is about to realize that we have to be so much more than dispensers.

And one way to do that is to look at the specific difficulties a person is having and have us treat it. Why not?

Carrie Spangler: [00:10:35] Right. Essentially you had this amazing teacher, Dr. Katz. Can you just give us like a 360 degree definition of APD, but people that might not have all of the knowledge that you have.

Angela Alexander: [00:10:51] Absolutely. So, first of all, I like to put it on the same continuum as hearing loss, because I think when we do that, it helps people who work with dispensing feel a little bit more comfortable with this. So the way I like to put it on the same continuum, is looking at Erber’s model of auditory skill development.

So think about it as a staircase with four steps on it. The very first step is awareness. If a person isn't aware of sound, they may have hearing loss or auditory neuropathy or hidden hearing loss. We deal with issues of awareness with amplification, with devices. With cochlear implants, things like that.

So what we want to do with awareness is we want to boost that signal. The second level, after we get past awareness is called discrimination. Can you hear the difference between two sounds? Can you hear the difference between mm/ng. And now you've gone through the cochlear implant process, and you know that you had to learn how to do that.

You had to teach yourself how to hear the difference between these two things. Once you get past discrimination, which is step two, you have to get to identification, which is step three. Not only do you know the difference that there's two sounds that are different. Do you know that that is M and that is N you need all three steps to get to comprehension, to understand what is said.

And I think a lot of audiologists think we can go from awareness and jump to comprehension and. We miss out the important part, which is the brain. And so I think a lot of us as audiologists and dispensing have had a client come in and based on their kids' case history, we're like, wow, this person has like a moderate hearing loss.

They've never had hearing aids. I'm going to change their lives. That's right. We do. We put them in the booth and, and behold, their audio gram is within normal limits. Then it's confusing. Wait, it looked like this person had a problem with awareness, but it was actually potentially with discrimination.

It's because it's at such a low level that it looks to us. Like it's actually hearing loss. We've also had clients who come in who have hearing loss. We put hearing aids on them and they still don't go from awareness to comprehension. So I'm going to say something really crazy. It is possible to struggle with auditory processing.

Even if you have a hearing loss. In fact, it's amazing that more people with hearing losses don't have auditory processing problems. So auditory processing is what the brain does with what your ears hear. People will say, does my child have auditory processing? And I hope they do because auditory processing is the function.

Auditory processing disorder is the dysfunction. So, so if to me, and this is a different definition than most people would use to me, auditory processing is where auditory skills effect Well-being. all right. Is your ability to understand what understand and remember what you're hearing, affecting your ability to have a great life.

Carrie Spangler: [00:14:41] I like that, but it puts everything into real life perspective, right? It's about the whole person. And if something, if you're not processing information and you know, As human being that's communication is key. So if we can't communicate with others, then your wellbeing is going to be impacted.

Angela Alexander: [00:15:00] Absolutely. And so for me, like, I like to use the HHIA, which is the hearing handicap inventory for adults in particular. I don't like to use that second age cause it's just lame. So I like to call it the hearing inventory for adults, but just in case anyone's looking that up, it's a free tool and it's 25 questions and you answer yes sometimes or no, and at the end of it, you get a score. And so if you see a person who has a normal audiogram, but their HHIA score is really high.

This is a red flag that there's something else going on. Or if you have a client with a hearing loss and their AHI score is really high and you put hearing aids on them and the score stays high yet again, another red flag.

Carrie Spangler: [00:15:54] Yes, that hearing aids and cochlear implants, aren't just going to fix it. There's gotta be some steps in between, right?

Angela Alexander: [00:16:00] Absolutely. And we need to partner with those clients to help make that a faster, more efficient process. Yes,

Carrie Spangler: [00:16:10] I like that. So I'm going to like put a little twist in the conversation just to hear what you have to say. So I work in the schools and, and then talking to other people too.

But I think within my profession at some different universities and even a lot of outside of our profession, there is belief that maybe APD does not exist. So can you, what is your take on that? If someone says, you know, that doesn't, that's not a

Angela Alexander: [00:16:43] real thing as healthcare professionals. We need to do no harm.

And you know what, I'm going to honestly say anyone who pushes the idea that auditory processing disorder, isn't a legitimate issue is doing harm. So just because it's funny, I, I actually had a professor once who said auditory processing doesn't exist. Cause that stuff happens to me all the time. So it it's it's comments like that, where you see a lack of empathy in a profession that's supposed to be the one who advocates for people with hearing disorders.

I don't understand where we fell off the bus with this one, but I think that there is we actually have C ABR complex ABR that can pick up difficulties with auditory processing with, with this equipment. And that is going to change the conversation from, is this a thing too? Oh my God, this is a thing we need to treat it.

I can't tell you how upset. The clients that I work with feel after they've been to hearing test after hearing test and have been told that there is no problem when these people have an HHIA score, 88 out of a hundred and a hundred is the worst you can be. And they're at 88 with a normal audiogram and people have told them.

There is no problem. And my, my university was very skeptical about auditory processing disorder. And I'm going to actually say something here that I have not said publicly. But my. I applied to get my master's in speech, language pathology from a really highly

Angela Alexander: [00:18:36] respected university after my AUD to become dually certified.

And I was rejected because of my interest in APD.

Carrie Spangler: [00:18:45] Wow. Yeah, that's it that's alarming. But I think your point of patients coming in and saying, I have difficulty. Processing with auditory information and you give them a questionnaire and they have a normal audiogram. We, we can't just ethically and morally be like, see ya, because there's obviously something that they are experiencing.

Angela Alexander: [00:19:13] Exactly exactly. It breaks my heart. It's so funny because you know, if we look at hearing loss, we say, Oh, the client has so much denial, you know? And so we have to prove to the client, they have a problem. A lot of these people who have an auditory processing disorder come in and they have no denial.

They're like, I am really struggling. And for some reason, the clinician has more denial. But then if we look at other things like with tinnitus, the clinician has no denial. The clinician agrees and believes that the client has a problem with Misophonia. The clinician understands and believes that the client has a problem.

But with auditory processing disorder, a majority of clinicians do not believe that there is a problem.

Carrie Spangler: [00:20:04] Yeah. That's so hard. So what do you think audiologists can do to help people who come into the clinic or into the school? Start and say, they're struggling with auditory processing. What could they do and what would you do as an

Angela Alexander: [00:20:20] audiologist?

There are two things that you should do depending on the population. If you're working with adults, bring that HHIA form into your clinic. And I start utilizing it immediately. If I don't have it, I feel like I'm flying blind, honestly. So you need to see what that score looks like. And if it's below. 14, maybe things are about within normal limits, but if it's higher than that, that person may need an extra referral.

The second thing that I was going to mention is knowing who in your area does this work? So if you don't, so if you don't know who's doing this work, you can go to an online searchable map that I've created, where you can put in your address and find out the closest specialist in APD. And if you can't find one become that specialist, we've just added the very first APD clinician in Las Vegas and Nebraska in the last three months.

Wow. Unbelievable. Yeah.

Carrie Spangler: [00:21:29] And is that because of your course and everything, or they found another

Angela Alexander: [00:21:34] way? So, so when I, when I started this map in 2008, I added everybody who said they were specializing in it. And there were 250 people on the map. You know, if 5% of the population have APD, that's 300 million people worldwide who speak English and 250 of us doing the testing, then I.

I didn't update in 2018, still 250 people. That's all that we're doing. The testing or treatment. I did another update. I'm trying to do two different things to increase the number of professionals I'm running those online courses. And then I'm trying to search out people who are doing the work, who aren't on the map yet.

So our current numbers are 376. So we've gone from  250 to  376 feeling really good about that. But I've got my eyes on 500.

Carrie Spangler: [00:22:30] Well, that seems like you've had a good jump so far. So that's a good, positive thing too. We're trying to think some of it has to do with the undergraduate graduate AUD programs as well, where, you know, people aren't either they're not learning enough about it or they don’t spark nterest.

Angela Alexander: [00:22:53] 40% of graduate programs do not have a course in auditory processing disorder. And if we think about the fact that out of a thousand children, right, we may have one to five with permanent hearing loss, whereas. Out of a thousand children, we have 50 to a hundred children who may have auditory processing disorder.

So it is much more prevalent even in the, you know, early childhood education then than hearing loss. Yet we have very few clinicians doing it. The latest ASHA Survey said that 1.4% of audiologists routinely test auditory processing disorder. That is just insane. And I mean, there's a lot of, there's a lot of things that we have to undo from our profession.

Like there was this old school belief we couldn't test before seven years of age. Because the system wasn’t  fully mature, what system do we wait until it's fully mature to help it develop. That is just crazy. Early intervention is the wave of the future. How is that different with auditory skills?

Carrie Spangler: [00:24:13] So what kind of testing with screenings do you do with some of the below seven kids?

Angela Alexander: [00:24:21] That's a really good question. Okay. So for screening, like you want to have a really good conversation with the parents because it is fairly obvious when it's child should have a referral for an auditory processing test because these parents come in, they, they say, Oh, I really feel like my child has a hearing loss.

You do a hearing test. And it's like, okay, actually that doesn't seem to match up with what the parent was saying. That should be an immediate referral. Also you can use acoustic pioneer, feather squadron. So Matt Barker created this wonderful software and it's an app that helps to assess some auditory processing abilities.

You know I would say that I really liked the app. It doesn't necessarily always catch all of the children who are having processing difficulties. And I've talked to him because. I think his idea was let's, let's kind of take the speech language portion out of it, but the speech language portion is the most important reason why we should do an auditory processing evaluation.

Matt and I are really good friends. I have no conflict of interest saying that I absolutely use his products constantly for me. It's great because I can do an evaluation with his testing. And then in addition to my battery, and then I can do post-testing using that iPad as well. And I can get an unbiased behavioral data from that as well, some pre and post testing.

So it's brilliant for me, as far as screening is concerned. One of my main concerns that I've got with almost all of the screenings Software and. Materials that we've got, is that not all of them are very sensitive. They're more specific. And I think with auditory processing, we need to go more sensitive because we need to make sure that we are absolutely not rejecting someone for a further evaluation, if they need our help.

Did that answer your no, it does.

Carrie Spangler: [00:26:28] Yeah.

Angela Alexander: [00:26:30] Yeah, we're also trying to create this HHIC like so that the parent can answer these questions, but it's just being created, but I can share that for me.

Carrie Spangler: [00:26:39] No. So that would be like the children version that the HHIA then, so yeah, I was going to ask you if there was some kind of a checklist or, you know, screening instrument that you could.

Have parents fill out that would give indicators, like you said, that, you know, above 14 or 20 and this form, then this is a red flag to say, Hey, we need to look a little further into it.

Angela Alexander: [00:27:06] Yeah. And, and like this, there are a lot of different APD screening forms. I want people to have access to something that's free.

Okay. All right. That will help identify things. And what I think the HHIA does really well in adults is it picks up on psychosocial issues. It picks up on issues of wellbeing due to hearing problems. Now. One thing that I should say is that there's also the Buffalo model questionnaire. Jack Katz created that Buffalo model questionnaire.

And that is a really good functional questionnaire to get an idea of, okay. Are there potential red flags here that for auditory processing as well, but just looking at it. What can a majority of clinicians do something like the HHIA, maybe the HHIC, the problem with the AJC that I've got so far as parents are sometimes, sometimes have a hard time understanding how much difficulty their children are having.

Yeah,

Carrie Spangler: [00:28:08] especially the younger ones. When they get a little bit older, they can, you know, to the questions and they can,

Angela Alexander: [00:28:15] but then, then when let's say the child is a teenager, it's really easy for parents to be like, Oh yeah, my kid doesn't care about anything. Oh my kid's not as intelligent. You know, like they can apply different labels to what they're seeing.

They may think it's a behavior issue or an intelligence issue or something like that, which is really sad.

Carrie Spangler: [00:28:36] Yeah, which kind of actually brings me to another question. So. Do you see APD coexisting with other conditions a lot. And what, what do you see it mostly co-existing with

Angela Alexander: [00:28:52]  any kind of neurodivergence can have a higher potential for auditory processing difficulties.

So ADHD, autism dyslexia. I mean, I think. Jack Katz said that if you look in any specific population, you're going to see a high incidence. He said, for example, people with large noses have a high percnetage, people, auditory processing disorder. So basically what we're saying is it is highly prevalent, prevalent.

If you've got any kind of neurodiversity going on, there is the potential that a, person's going to have a hard time understanding what they hear, but in a lot of these cases, Where a person is multi-factorial and has a lot of different issues. We can work with auditory processing and make that better, and we can see improvements in other areas.

So for example, I've had a couple of clients recently that I've been working with who have. Anatomical anomalies in the brain. One has no Corpus callosum. And we're like halfway through her therapy her round of therapy. There's also a child that I'm working with whose mum could not get testing done for auditory processing.

Cause she had low IQ. Why shouldn't we be helping that? Like, would we, would we say we wouldn't do a hearing test or put hearing aids on a person with low IQ? That's absolutely ridiculous. Becoming a parent has made me realize that here's this child. We want them to have the best chance in life to be the best person that they can be.

What can we do to help that child get there?

Carrie Spangler: [00:30:37] So, Kind of playing a devil's advocate for that part of it. If you have a student who may not be able to participate fully in the testing, how do you do that? Do kind of quantify that a little differently or do you kind of have a, I don't want to say a disclaimer, but just kind of some wording that says, you know, that they weren't able to fully participate.

Angela Alexander: [00:31:04] Yeah, we get as much baseline as humanly possible. All right. So we go in there, we gather as much data. We see what that data is telling us, and then we do therapy and then we do a retest. So for example w there was a child that was only able to do there's 40 items, 40 items on the SSW test. I was only able to do 10 on them.

Last October. And, and now we're just at the retest. We're about to retest him. And and I actually expect that we'll be able to do the full test. Now, Jack Katz likes to use this wording. He'll say we're going to use auditory processing disorder as a working hypothesis. You know, ASHA and AAA had these position statements that came out that said a person had to fail two tests by two standard deviations or a single test by three standard deviations and even national acoustic lab national acoustics laboratory came out and said, those numbers are arbitrary.

We cannot say that a person does not have an effect on their lives based on these arbitrary numbers. Because if a person fails a test  by one standard deviation, it means that 85% of the population, it could mean that up to 85% of the population, their same age does better than they do. On a particular task.

If 85% of the population is doing better than me at something, I'm probably going to feel like this is affecting my day-to-day life. So watch this space because it's a, it's an argument that's just kind of slowly started and now it's working itself into a fever

Carrie Spangler: [00:32:53] and I you're a part of that fever.

Angela Alexander: [00:32:56] You better believe it.

See, I don't, I, you know, I don't actually care about. Auditory for, I don't think auditory processing disorders, one thing. And I don't think that people need to like lock onto that disorder. Parents need that name to know what to call it, but it's more important to find out is this person a good candidate for therapy?

Can we treat this? Yeah.

Carrie Spangler: [00:33:19] And I think in the schools, I love. That we can work with the school psychologist and work with the speech language pathologist and kind of see what testing have, you know, have and, and see. And when you do your testing and you're able to put some of these pieces together, it makes so much sense of like, what are the, what the next step needs to be and what accommodations need to be put in place as

Angela Alexander: [00:33:45] well.

Yeah, absolutely. Completely agree. I completely agree.

Carrie Spangler: [00:33:51] So what do you wish more audiologists would realize then? You kind of said it, but I just want you to highlight it again.

Angela Alexander: [00:34:01] Yeah. Yeah. Oh my God. So many things. All right. I'm going to pick five things.

I

Carrie Spangler: [00:34:09] love it.

Angela Alexander: [00:34:11] Five things. Number one, we can test for auditory processing down to three and a half years of age.

There's also neurological testing that can identify children at birth. Number two. Middle ear disorders potentially have greater impacts on life than what we had anticipated. So take those abnormal tympanograms seriously. Number three, we can test for auditory processing when there are other things going on in a person.

Sure. They can have auditory processing secondary to Other things that they have problems with, but if we can treat this and make their lives better, let's do it. Number four. We need to make sure that we are actually listening to what our clients are saying. If they say that we have, they have a problem, we need to believe them in the famous words of Gail  Whitelaw Audiolgrams don't talk patients do.

And number five, auditory processing disorder is treatable. We can do auditory training and we can make this better hearing AIDS are not the only solution to every problem. And the moment that audiologists can realize this, we will have better job satisfaction, lower cost of goods, and we are going to change a lot more lives.

Carrie Spangler: [00:35:37] That's a good

Angela Alexander: [00:35:37] top five. I just made those up. I believe them.

Carrie Spangler: [00:35:43] Yes. And that's important. I can tell. So why not the question about like what you said, you know, that we can definitely improve out auditory processing. So can you share just a little bit more about what your training looks like and also maybe more the accommodation piece of how you can help someone in their day-to-day

Angela Alexander: [00:36:05] lives.

Oh, where to start. Okay. So, so first of all, with Jack Katz's Buffalo model, we do therapy. We do rounds of therapy, the very first round of therapy, which is about 12 to 14 weeks. We do. Four different exercises in each therapy session. The very first part is something called phonemic training and it's actually training people to quickly and accurately like recognized.

Speech sounds. So, for example, I might hold up a hoop visual filter without being an auditory filter. And I would say a sound like D D D and every time a person hears that sound. They have to tap a card on my table. Okay, then I bring in another sound in that same session, like the eh. Now you can hear that there's a big difference between D and F right?

So then we have the D and the air next to each other on a table, the short E and the D. And I have them distinguish between discriminate between the two. Then we bring in a third sound like that. We put that one in and they discriminate between those three. The next week we have them come back in. We refresh them on the D the short E the M.

And then we bring in another three sounds. Let's say B, ah M. We don't ha we don't mix those with the D the short ENM, because there are some sounds in there that could fight with each other. We don't want that. So we, what we do is we slowly try to layer a person's understanding of these individual speech sounds.

And while it seems like it is not rocket surgery, it is absolutely necessary to start at this very basic level. I even do this work with adults and adults with cochlear implants. To help them go from discrimination to identification. So that's that goal. We want to pull them up. Erbers model of auditory skill development.

The next thing we do is something called words in noise training. They listen to words. Noise starts with no noise and slowly increases until the noise is even with the words and it's multi talker, babble noise. So it does have a bit of relevance there. The third thing we do is short-term auditory memory work.

Just rote memory work. We want to increase a person's digit span by one. And then the last thing we do is a speech sound blending game. So if I said Sh E you would put them together and say, she, right? Yeah. So that's, that's what one of therapy looks like, and it starts off really basic and it gets more complicated.

But the fundamental changes that I see in a person's auditory skill abilities after it is. Incredible.

Carrie Spangler: [00:39:18] And eventually with some of your patients, if they go through a therapy and they have different supports, do you find them when you retest that they, I was scoring within normal and then that their inventory improved.

Angela Alexander: [00:39:34] Oh my God. Yes, you, you get it. You get it. So. So, yeah, quite it's quite common to watch a person go from having some severe, having severe scores to scores that are within normal limits. But remember what I said earlier, normal limits could still mean that 85% of the population are doing better on a task than you are.

So, so that is something to keep in mind. Isn't it. But. But what we do see is that AAHI , I want to see how low that score can go. And there's one client. Jackie who's offered to be a case study for me. And she started off with a normal audiogram and a score of 88. After one round of therapy, her score was 30. Hmm at retest a couple months later, she was at 24 and I called her as a six-month followup and her scores at 14.

So we can see someone go from feeling quite depressed about their hearing abilities to having hearing wellbeing that's within normal limits. And that's just from auditory training. That's no devices whatsoever.

Carrie Spangler: [00:40:43] Wow. And do you find like, Maybe two years down the line that they still feel that they're at that 14 level or the,

Angela Alexander: [00:40:54] yeah.

Good question. So I've just been using, I've just recently started using that HHIA to help guide what we should do for intervention. And now my thought is. Oh, wouldn't it be cool for, I, for me to have an automated email process that would automatically send them that survey to have them fill those in, you know, quite regularly

And really to get some more long-term data. Yeah, I would anticipate because I think some research has shown that there can be further improvements in auditory skill abilities, up to six months, post therapy. Jack Katz has a belief that if we're working with short-term auditory memory at the same time, as we're doing this other auditory training, it's going to stick for longer.

But it's a little bit like working out. Like I play roller Derby and, and I roller skate a lot right now. I've done a lot of that work. And so I'll never go back to how I was pre roller Derby. You know, like if I put skates on, even if it's been six months, I still have abilities that are higher than the average person.

And I can also fall down more often, like I did last night, but that's fine. So, so, you know, my baseline has changed quite considerably and it's the same thing. Like you can work out by listening to audio books and things like that. Audio books. Are a great way to maintain things, but it's not necessarily the best place to start off.

As therapy

Carrie Spangler: [00:42:30] does that makes sense? Oh, it does a hundred percent. Like I agree with you from a more the cochlear implant journey perspective where I'm kind of in the maintenance phase, but I needed to start what you said with the more fine tuning discrimination and just telling the difference between.

The ling sound and things like that. And then doting up to more minimal pairs and then listening and noise and that kind of thing, but it didn't happen overnight. And it definitely took a lot of coaching and determination to get to that point. But I agree with you, like there's times where I'm like, okay, I just need to sit down and refresh my brain with.

I'm listening because you get lazy, like you said, it's like wiping out. Like you, you know, you're not going to go run a marathon when you haven't done any training previous, so it just doesn't work. So Before we wrap up. Is there anything that you would like to share that I didn't

Angela Alexander: [00:43:38] ask you? No, I don't think so.

I think, I mean, just to kind of talk about the cochlear implant stuff for just a moment, you know, I, I just recently started doing some auditory training with adults who have cochlear implants. And one woman said to me, she goes, I don't feel like I'm really struggling. Her HHIA score is really low. It's like.

  1. So it's really low. She has bilateral cochlear implants, but she said her first implant took her over a year to learn how to process with it. And she said, you know, it was really interesting. It was interesting for me. To talk with her because when I talk with an auditory process, a client with auditory processing disorder, who is an adult, they may have a hard time believing that it can, that auditory processing can change.

But if I talk to a person who has had a cochlear implant and who has successfully trained themselves, how to process. Over a long period of time. They know that auditory processing can change and they're interested in finding out how we can make that happen in a more efficient way so that their life doesn't have to be impacted so much.

So it's really interesting to talk to a person with a cochlear implant. I had one. One man that I talked to and he said, wait, I can actually hear everything now are you're saying I have an auditory processing disorder. Now we don't actually have to give a person a diagnosis of an auditory processing disorder.

Hearing loss is enough of a diagnosis. Let's just see if we can treat things and make it easier. So, yeah. I've yeah, it's, it's I'm, I'm currently wanting to expand how we see auditory processing. And I hope that others come along for the ride.

Carrie Spangler: [00:45:24] Yeah. Well, I just want to say thank you for being here today, Angela, because this is such a engaging conversation conversation, and I'm so glad that we were able to have it today.

And then for our listeners, I will make sure that in the show notes out, put a link to your website. I'm sure you have one and you can share that with me and any other resources that you want to share with anyone too. But again, I just want to thank you for taking your time and being a part of the empowerEAR audiology podcast.

Angela Alexander: [00:45:58] It is my pleasure. You asked amazing questions and I enjoyed the conversation too. I thank you. You're welcome. This has been a production of the 3C digital media network.

 

Episode 20: EmpowEAR Audiology - Karin Weiser

Karin Weiser Episode 20

Announcer: Welcome to episode 20 of empowEAR Audiology with Dr. Carrie Spangler.

[00:00:15] Carrie Spangler: 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 your own challenges and those who want to be inspired.

[00:00:44] 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 on the empowerEAR Audiology Facebook group transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowerEAR  podcast tab.

[00:01:17] Now let's get started with today's episode. All right. Let's get started with today's episode of empowerEAR audiology. I want to share that one of the joys of doing a podcast is you never know what kind of connection you might make. So today I am really excited to have a guest who resided on the other side of the world and because of networking stories, I paths I'm connected in a personal way.

[00:01:43] Let me share an introduction about Karen. She is British by birth. Global by choice Karin has lived and worked in nine countries across four continents, extensive travel, European roots and cultural savviness. Give her a license to operate globally. 20 years of business experience spanning the pharmaceutical industry, executive search and market research in London, her passion for people and words has been uniquely combined during her career.

[00:02:16] She has taught English as a foreign language around the world and has more than a decade of experience in learning and development communications and people in change. Her own story has been rewritten many times, which has led her to work with storytelling. Her fascination with the human mind and resilience shown in the face of adversity means she always has an inspiring story to share.

[00:02:43] She started her journey as a coach and a mentor in 2008 after immersing, herself, and the world of neurolinguistic programming. She became ICF certified with coaching in 2017 and has not looked back. After hearing this internet introduction, you might think, what does Karen have to do with empowerEARed Audiology?

[00:03:07] Let me introduce Karen and we will find out so welcome to the podcast and thank you for being here. 

[00:03:15] Karin Weiser: Well, thank you for inviting me, Carrie. 

[00:03:18] Carrie Spangler: So do you want to share with all of my listeners a little bit of how we got connected? 

[00:03:24] Karin Weiser: Yes. I'm happy to do so, so well. Let's just put it on the table. I'm also hearing impaired and I had quite a journey to get to where I am today as a successful cochlear implant user.

[00:03:41] Three years ago, I got my, my cochlear and I was activated and it's changed my life. And about a year ago, I started blogging for the IDA Institute, and I think I've done four blogs in total and the latest blog. Was published last month and you commented on it. And it was about my journey leading up to getting a cochlear implant, which I know that the Ida Institute has told me is, um, I don't think they've got many stories to share about it.

[00:04:16] I think it's still relatively new, even though they've been doing cochlear implants since the early nineties, I believe you might know more than more about that than me and I reached out to you and we got connected. We had a dialogue and I offered my story to share via this podcast. And we jumped on the opportunity and here we are.

[00:04:40] Carrie Spangler: I'm so excited that you're here. And then just for our listeners, if anybody's interested in the Ida Institute, it is located in Denmark and they are an independent nonprofit organization that works on building a community that embraces person centered care. So with clinicians and academics and people with hearing loss around the world, um, they help to develop knowledge.

[00:05:03] Skills and confidence to better manage hearing loss. So you can always get onto the website and find the many tools that they have to offer, um, for professionals and for families and individuals who do have hearing loss. So just a little plug in there, but for them. And I had told Karen that I actually.

[00:05:23] Was over in Denmark, um, several years ago, working on a project with the Ida Institute. So our paths have crossed, a different time because of a common connection. Um, but I was exploring your website and I love your motto of helping professionals and organizations to rewrite this stories and walk their talk.

[00:05:45] So can you tell me more about why you believe storytelling is so important? 

[00:05:52] Karin Weiser: Well, basically the human brain is wired for stories. We tell stories all the time in our casual conversations without actually realizing it. And I've used storytelling in my corporate days and learning and development, or as in encouraging my subject matter experts to start their training with a story.

[00:06:13] And why, because that's how we learn stories, open up for emotions and make facts and figures colorful and make it stick. Then there's the stories we tell about ourselves and we're unaware of them less. Sometimes other people will point them out to you. And that's my, I'm going to say expertise as a coach, sometimes holding up the mirror to let the other person know.

[00:06:42] Do you hear what you're saying about yourself? Um, do you know, storytelling is an effective tool that's used in communication to influence and change behavior? But, you know, the stories that we tell about ourselves can really influence our beliefs and whether we think something's possible for us as well as affect the outcomes.

[00:07:07] So we need different stories for different situations. And, you know, we also need to be aware that we always have a choice about what story do we want to tell this? Let's give a global example. What story are we all going to be telling about the pandemic? I'll leave that one with a question, mark, but going back to hearing loss, what story do you want to tell about your hearing loss?

[00:07:32] Are you a victim or a survivor? And you know, just to highlight again, you can change your outcomes by changing the story. 

[00:07:44] Carrie Spangler: I love that. I think storytelling is so powerful and you just put it, those words in such a way that makes us realize the importance of storytelling from many different angles. And I think after reading your blog that you did, um, I.

[00:08:05] Um, it seemed that you had to rewrite your own story as it comes to your hearing journey. So can you share a little bit more about that? How you read about your own story, about your hearing journey? 

[00:08:17] Karin Weiser: I, um, yes, so I found out about my own hearing loss when I was 15 and, uh, that's going back more than 30 years and I was basically told to go away and get on with it because there's nothing we can do.

[00:08:34] Um, neither my parents, or I challenged that now, given that what I know today and when it was not that I'm that old, but it was in the late eighties. And I have an unusual hearing loss where half of it is pretty normal and the other half is pretty bad. And I actually believed that there was probably nothing around at that time technology wise that could help me.

[00:09:02] So I did just go away and get on with it and spent the next decade, living my life, studying languages, traveling, living abroad, teaching English around the world and getting a degree in, in languages, Danish and German, and I have had in France. So I, I speak three European languages. And when I started my first.

[00:09:28] Permanent full-time job, mid, mid twenties. It was in London and that was in the late nineties. And I experienced discrimination in the workplace. I had never been introduced to any information about what hearing loss meant. I had no tools. So my initial reaction just brought up all the feelings of.

[00:09:56] Embarrassment, not feeling whole, I didn't know what to do. Although I knew some of the things I couldn't do. And this was related to the particular job I couldn't transcribe from recorded conversations because I would not get it all. And I struggled with a role as a kind of switchboard taking telephones and passing them on to the consultants.

[00:10:19] In an attic, what was working in an attic? Five people, fax machines, you name it. Background noise is a killer. As you know, Carrie and I was demoted to shredding paper. I was deeply unhappy. I found another job and again, shied away from. Dealing with it. Although I did see a consultant in Harley street, but again, in those days, hearing aids were super expensive.

[00:10:50] I didn't have the money for it. And I considered myself living in a really noisy city and I just thought, but you know, there were many hours in my life where it was okay. I wasn't struggling. And. Cutting long story Short time when worked abroad again a bit more. And I ended up moving to Denmark in my late twenties and I was told, Hey, hearing aids are free here.

[00:11:14] I did explore getting two. And within a couple of years, they ended up in a drawer. I did not use them. I later understood more. What had happened. I had not received the emotional support that I needed. I have not received the patient centered care that I know that Ida Institute. Is promoting. And a few years later.

[00:11:40] Another story short, I decided I kind of pulled myself together and went back, go, right. I need to get some help. By then there was such a long waiting list in the public sector that I went private. I was in my late thirties at this point and I got my first hearing aid and this audiologist became my guardian angel in disguise.

[00:12:04] And that was my first experience of patient-centered care. And she dealt with the emotional side of getting a hearing aid and supported me almost for the next decade before I had got. Bad or that bad that I needed a cochlear implant and had to go back into the public sector. I know it was different from country to country by that because a cochlear implant belongs to the hospital sector, here in Denmark.

[00:12:32] And, um, yeah, so I struggled for many years, but a lot of it, I, I did innately, I developed my own, know how of what to do, but from. Just for example, in meeting rooms, making sure I sat with the window behind me so that I didn't have bright light coming into someone's face and asking people not to chew and speak at the same time.

[00:13:04] I mean, or to face me, but people forget, even though they know you have to keep repeating it, that becomes tiring and itself. Um, yes, it's been quite a journey. Do you have anything else to sort of add here before I go off on a tangent, 

[00:13:23] Carrie Spangler: I kind of wanted to think back what you said, that the one doctor told you when you were 15 and your family, that there's nothing we can do and go home and get on with it.

[00:13:36] Did those words impact you at all? 

[00:13:40] Karin Weiser: To be honest, not really. Only to the extent that that was what I used as my guiding star on that point though is not until we can do. I just have to go in and get on with it. And honestly, in the next decade, there was nothing that stopped me doing what I did. Yes. I had some situations when I struggled.

[00:13:59] Yes, I was no good. I couldn't have a proper conversation with me when I was at a disco, but most of my friends would remind me, nobody came, you know, you ended up sometimes building up little things of all the things you can't do, but people remind you, this is difficult for us as well. So it's even more difficult for you.

[00:14:16] And I have the kind of personality that's pretty determined and I persevere. And I kind of rolled my sleeves up and decided I decide what I can do, but obviously wind forward 20 years. Some of the things that I, or the list of things that I couldn't do was getting longer. And that's when I realized. My hearing was getting down and because I had moved around and lived in so many different places and switched from different or a couple of different audiologists, I didn't have somebody who had my hearing curves for the whole time.

[00:14:56] I didn't have that evidence but. You don't really need that to make that decision at the end. When you, when you know that you are a cochlear implant candidate. 

[00:15:07] Carrie Spangler: Yeah, which I think kind of gets to my next question. Could you just share more about that journey to the cochlear implant? 

[00:15:16] Karin Weiser: So it's something I didn't really know much about and you just, you just see the device on people's heads.

[00:15:22] Um, but I had, it was during the autumn of 2016, I had experienced that. Sometimes some of my colleagues were actually quite near, but I was saying, come closer. I can't hear you. And usually I wouldn't have an issue with their voice because there were some, as, you know, two pitches that are more challenging than others.

[00:15:46] Um, so I went to see my audiologist and, um, we did a hearing test and she said, I think it might be time for you to explore a cochlear implant. And I had to push myself back into The public sector and it took a few months to get an appointment. And then I went through various tests and that was a bit of a slow journey to get to those appointments, those initial appointments.

[00:16:09] But I remember the doctor sitting there and saying to me, we think you'd be a candidate and it would have a high. How can I put it? There's a really good reason, um, risk or opportunity for this to work for you. And he gave me the reasons is that you're, you're a linguist. You do something the rest of us don't do.

[00:16:39] And. Everything just, I mean, I was tested in Danish and English is my mother tongue. So I was obviously probably a scoring a lot less than in another foreign language, which is a bit of a mumbly language. Um, I don't know. I think it was like he held up a mirror to me and I didn't see that. I, I didn't want to wear the label that he gave me.

[00:17:00] You gave me a label as you're severely hearing impaired, and I'd always just sort of worn a label. That was, oh, I don't hear so well, you know, um, if you look at the meaning of those words, there's quite a bit different. So that was a shock in itself to actually acknowledge that I'm severely hearing impaired.

[00:17:20] But that is this sort of label. You have to have to be a candidate for the process. And I went through the various tests, brain scan balance you name it. And I think when the, the letter came through in the post and I saw it in black and white, that I was officially cause his estimate. It was only an estimate that 4bmonths later, I'd done various tests.

[00:17:48] Then that made me realize I've got to do this. 

[00:17:54] Carrie Spangler: Yeah. I think one of the things that you said in your blog, um, you have a quote by Tony Robbins that states it is in the moments of decision that your destiny is shaped. Can you share, it sounds like that was kind of one of those moments. Can you share more about how your mind shifted and that impacted you?

[00:18:16] Karin Weiser: And, you know, it was seeing it in black and white. And I had obviously read that quote about the same time I realized I've come to the end of a road where I had nothing to lose. Of course, I didn't know what was waiting for me, but I had reached out to the international cochlear implant Facebook group a few months earlier, just as I had started these tests.

[00:18:40] And I remember two Comments really stick with me today. And I have written about them in the blog. One of them was somebody had said,

[00:18:54] expect nothing hope for everything. And I thought, great. And another lady had written make sure you're 100% ready. Don't don't. Do anything you don't want to do, make sure you, and I know she was talking emotionally, make sure it works a hundred percent ready. And that's the one thing I'm going to say about the diagnosis to not once.

[00:19:18] Did I feel any pressure I was told I could complete all these tests and then once you get the letter in black and white, if I didn't want to do it, I could put it on hold and these tests would still be valid. And it could be six months or two years before I have to, I could make the decision. And, and that was it really.

[00:19:40] I know there's another thing that I had told you. I told myself during the, the journey of studying my hearing loss  and coming to terms with it, I had often said to myself, what doesn't kill you, makes you stronger. And yes, there is a risk and any operation that you might not wake up. I mean, that's just like, well, you know that one, but it's minimal.

[00:20:01] If you're a healthy person and you're going in for something that's not life-threatening. So I've kind of just decided to do it. And that was at the end of September. By the end of October, I had a date with a surgeon and I made the operation date with him for after Christmas. And I chosen the color of my device and which device we could choose between four different products.

[00:20:27] And I just sort of did it

[00:20:30] Carrie Spangler: . So once the ball got rolling and you made that decision, but I think your point. Yes, we have to be a candidate just from, you know, the hearing test itself. But that emotional part and being ready is important too. And I don't know if whatever, a hundred percent, but we have to be at least more ready than less ready  in that kind of a situation.

[00:20:56] I know for me, it took me a while and I'm an audiologist to get to the point where I was mentally ready to make the decision too. So more 

[00:21:06] Karin Weiser: than I did, you know, you probably have more information about hearing loss tools, you name it. So, so that, that, like you say, I think when you are emotionally ready, it increases your outcomes.

[00:21:19] Or gives you a higher chance of being open to all the different things. So I knew some facts and figures of what I would experience with the Mickey mouse noise to start with, because I still had some natural hearing and a hearing aid in the other ear. It was just funny to start with. And I must admit that phase when disappeared quite quickly for me, I still have to go back and think of some funny situations.

[00:21:47] They're actually five days after coming back to work after my activation. So I'd had five days of double up Mickey mouse noise. I did a presentation in front of 150 people, but I chose to take my. Device off because it was too confusing and I had. Um, my boss has already questions. You're going to repeat it.

[00:22:10] Cause she was sitting right in front of me because I was really worried about not hearing the questions from a big auditorium, but those are the kinds of things. And I just thought I've got to do this because it was holding on to who I was and what I could do, but I took it up. I didn't wear it because I didn't want that noise to, it was confusing.

[00:22:29] Carrie Spangler: Yeah. So I'm five days out. You're still, your brain is. Trying to figure out a lot of different information at that point in time. So there's not enough experience at that point. So is there anything that you've learned through this whole process

[00:22:47] Karin Weiser: to share with others who the going through it, but tell you what, going back to the stories, you know, when I think back to my journey, I did not have access to success stories. I did. This was three years ago. Podcasts only just starting then they were not the norm. They're becoming more and more readily available.

[00:23:10] I lacked information. I lacked, I lacked information with people who are living in a foreign country and dealing with two or more languages other than the mother tongue. And I think what's nice is to share a success story, to give people hope. Why can't my story or my journey happen to other people. I know it's very different depending on your starting point.

[00:23:39] And you know, more about that one than may with the types of hearing loss there are, and there are even people who are profoundly deaf, who are getting cochlear implants and hearing things for the first time in their lives for you. And I it's, it's recognizing sounds that we've lost from our past because.

[00:23:58] I've always been part of the hearing world. Um, as I suppose, just like getting hope, but hope also in the way the work you have to do on yourself to be emotionally ready. And for some people that might be researching technicalities and for other people that might be recruiting people to be part of your support group, whether that's both in the workplace, as well as in your private life.

[00:24:26] And, and for others, it might just be building up that trust and you,

[00:24:34] Carrie Spangler: no, those are all good. And I think you have a point of view. Finding that support network is so important. Um, and your point of sharing your story is so important too, so that others can learn and, um, started their journey wherever they might be. Um, everybody has a different starting point, but those stories that we're able to share.

[00:24:58] It impacts people in different ways. And I think your whole point of storytelling is so critical, but other people, um, to understand as well. So going back to your, um, profession of coaching, um, and coaching others professionally, you talk about own it, walk it and talk it. Do you have an own it,  walk, talk it story that you want to share about, um, recent and bad events and your cochlear implant journey either personally or professionally.

[00:25:31] Karin Weiser: You know what I'm going to say? Uh, everyone talks about owning your own story and that everybody we've got, everyone's got flaws. And some people are really afraid of sharing them, go through life, feeling embarrassed by them. I've been there with my hearing loss and I've got to the point where. I'm using it.

[00:25:52] I've turned it around as a strength and the opportunity to blog for the Ida Institute has been out there to share. Hey it's okay. Yes. I've got a bit of a silver lining story in terms of that, the cochlear gave me some hearing back that I never thought would be possible, but it's as wish I'd known. I know you've got your own one.

[00:26:14] It's not been an easy one to get there, but everybody's got something, whether it's a. And, uh, handicap that you can see or perhaps a health issue that makes them operate under par. Um, but it's part of your story. So I don't hide hide anymore. And even though I can hear some amazing things, I still have some limitations and I'm now armed with tools and better at communicating what I need to make me function in society.

[00:26:50] I'm putting up my boundaries for saying no. Um, I'm actually really super grateful to technology. I mean, I just think about the pandemic and the amount of online communication I've had to do in the virtual space with videos. And I've been able to hear without the video where, before it was always a needed the video and the podcasts and audio books and TEDx talks that I've been able to.

[00:27:17] Listen to and, and grow from. Um, you know, I just wanted to say, coming to terms with a disability is a bit like eat, eating a big cake and not every bite tastes nice. And sometimes, you know, you can't eat it all at once, so we need to digest and then move on to the next phase. And I know for many years leading up to getting the cochlear, but not realizing that that was part of my journey at the time, but just living with hearing loss.

[00:27:54] I was fed up of going to the, you know, another bit of technology that I needed to try out and another appointment. And I just wanted to get on with my life, but I realized it's because I couldn't do won't anymore. And I didn't want the attention. I just wanted to do what I wanted to do, you know, enjoy my life.

[00:28:12] So it's about that one bite at a time. And not everybody is tasty, but. Once you accept yourself. And I suppose a little bit of self compassion and self love coming through here because when you embrace your imperfections, life becomes a bit easier and I'll have to say. I don't really think about my hearing loss on a daily basis.

[00:28:37] I do in terms of just basic care for my device. And, um, I have moments that I really enjoy my quiet time, so I don't put my device on too early in the morning. And there are some advantages, but it's just a, it's not the elephant in the room anymore. And I'm so grateful for that. I put it in perspective, put it that way.

[00:29:01] Carrie Spangler: Yes. I like that. The cake analogy it's it does put things in perspective. So, and it isn't, you know, it isn't always tasty and other times it, it tastes really good. Right. And it just kind of, um, accepting all of those points along that journey. And I love your point about sharing. Sharing the silver lining, but also sharing like some of the struggles and challenges along the way so that other people realize, Hey, this not every person has a walk in the park, right.

[00:29:36] I'm experienced with it. So I think knowing that other people have these challenges along the way makes your journey a little more, you're able to self accept it a little bit more when you hear those stories from other people. 

[00:29:52] Karin Weiser: As well as remembering not to have that victim story, but the survivor and, you know, I'm reading Glennon Doyle Untamed book at the moment. And I just, the other evening I dip in and out, and there was a quote that she went past on her lunch break to want to reread on her fellow teachers wall or something that said we can do hard things. And I've been saying that to myself too. And it's actually helped me when I think of what we've gone through on the pandemic.

[00:30:23] I thought, Hey, I've actually gone through something. That's a bit harder on a different level of personal level. And just before we opened up for the podcast, we talked about another quote that I love to share about Steve jobs. And this I think is really relevant for anyone on a journey, a hearing loss journey.

[00:30:44] No, you, you can only connect the dots Looking back, but you have to trust forward and yeah, you don't know what the future is going to bring, but we are so lucky to be living in such a society that is full of technology and things are changing all the time. New gadgets new everything. So it's all to our advantage.

[00:31:09] Carrie Spangler: It really is. I love that quote too. So is there anything else that you want to share that I didn't ask you? 

[00:31:20] Karin Weiser: Um, so I work with international professionals who are ready to write the next chapter of their career story, but I also have a dream of actually working with other hearing impaired people. Who needs support to get to grips with their hearing loss journey or to prepare for the cochlear implant, or just actually deal with a hearing loss while they discover what their next career chapter is going to be.

[00:31:53] And perhaps they are fully, you know, there's no issues there, but they're sort of still exploring. I'd really love to work with people like that who might needs support from someone like me, where they can see, Hey, anything is possible because that's what coaching does for you. It removes your barriers and your obstacles and helped you see possibilities that you didn't think were open to you.

[00:32:16] And I think as a hearing loss individual, we we've had to change that perception of ourselves because there was a point when there were many things we couldn't do. 

[00:32:27] Carrie Spangler: I love that. And then you have that vision from a personal perspective of going through that process and taking your professional expertise of coaching and just kind of putting that into perspective, but other people too, helping them put that into perspective for themselves.

[00:32:46] Karin Weiser: Definitely. And you know, I will be the biggest cheerleader. And accountability buddy, because I do have this belief that anything is possible. And I know that can be used to be put into the perspective. You know, we're not all going to fly to the moon, but do you know what I mean? And, and we are the ones that are getting in our own way.

[00:33:08] Carrie Spangler: Right. We are unique and that's what makes us our individual. And we all have different dreams that we want to achieve. So I love that you want to kind of put both your personal journey with your coaching perspective. I think that could be very helpful for people. So if people are interested, individuals who are deaf and hard of hearing or other individuals who want to, um, have some coaching experience, how can they connect with you?

[00:33:37] Karin Weiser: So you can look at my contact details and more about me and, um, on blogs and everything on my webpage, which was my name which is Karin Wiese.com. And you'll put that in the podcast notes and I'm also very active on LinkedIn and, um, yes, so email contacts from my website, and I'll be happy to, to have an initial chat with people and see if there's some chemistry there, but also if they just need to.

[00:34:05] Share that perspective and need some support. 

[00:34:10] Carrie Spangler: Thank you. I really enjoyed this opportunity to connect with you and I think your. Ideas or your passion for storytelling is so important for other individuals and listeners to recognize that their story holds a lot of meaning and what we choose to tell is so important for others to hear.

[00:34:33] And it does carry a lot of passion and weight and influence when we are willing to share. I share stories with others. So thank you for sharing that. And thank you for sharing about your cochlear implant journey, because I know that is so important for others to hear who might be thinking about it or in the middle of the journey and want to have that support with others.

[00:34:57] Um, but again, I want to thank you so much for coming on the empowEAR audiology podcast. Is there anything else you want to share before we wrap up today? 

[00:35:08] Karin Weiser: Yes. Just one last thing. That's come to my mind now about our own stories and what we choose to tell about ourselves. You know, life's a journey and we are constantly changing.

[00:35:18] So your story needs  to change as well. So don't think that you've ever going to have a story and that's going to be static and that's it. You know, it needs to be changed as you go along and as you evolve, because we are different people from what we were 10 years ago. 

[00:35:36] Carrie Spangler: Right. So there's different chapters that can make you keep adding on to your story.

[00:35:46] So that's a good thing. Change is a good thing. Uh, well, thank you so much for being a part of the podcast. And, um, I will put all of your information in the show notes so that our listeners will be able to reach out to you. Uh, if they want to connect. 

[00:36:04] Karin Weiser: Thank you so much, Carrie. And I look forward to keeping in touch and, um, wish you all the best as well.

[00:36:09] And thank you again for this opportunity. 

[00:36:12] Carrie Spangler: Thank you. 

What did you think of that interview with Karen today? For me, this conversation validates why storytelling is a critical piece of the cochlear implant journey, the hearing loss journey. Whatever journey you might be on whether you are a parent, a patient or a professional.  Own it  Walk it talk it that's what Karen quotes parents own it. Walk it, talk it story about getting her hearing back through the cochlear implant journey is a powerful example of how to look at the silver lining and be grateful for the possibilities that open up. When we realized the power of taking small steps along the way to embrace imperfections.

[00:37:03] Karen, in this interview, she quotes Steve jobs, his quote, saying you can't connect the dots looking forward. You can only connect them looking backwards. So you have to trust that the dots will somehow connect in the future. She compares this powerful quote to her own cochlear implant journey. After this episode.

[00:37:28] Karin offered me a one hour personal coaching session. And it was just an amazing experience for me. Karin's personal experience of having a cochlear implant and her professional experience shines through and in a unique way that provided a positive coaching session. During this session, Karin asked just the right question and allowed me to have.

[00:37:56] Some aha moments about refining my own vision and how courageous storytelling with the words create a positive ripple effect for others who are willing to listen. She also challenged me to start a gratitude journal, which I challenge all of you to do as well to refocus my vision and achieve small and long term goals.

[00:38:19] I just wanted to say a huge shout out to Karin, but her storytelling and coaching experience. If you want to learn more about Karin, look it up in the show notes and you can click on a website and get in touch. Thanks again for listening to the empowerEAR Podcast, and I hope all of you will leave me a positive review, write a positive comment, and please share this podcast with all of your friends.

[00:38:50] Thank you. And enjoy. This has been a production of the three C digital media network. .

 

Episode 21: EmpowEAR Audiology - Dr. Sam Atcherson

Announcer: Welcome to Episode 21 of empowEAR Audiology with Dr. Carrie Spangler.

[00:00:16] Carrie Spangler: 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 your own challenges and those who want to be inspired.

[00:00:44] 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 on the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www. 3, the number three, C digital media network.com under the empowEAR podcast tab.

[00:01:18] Now let's get started with today's episode. Let's get started with today's episode of empowEAR Audiology. Today I am looking forward to interviewing a colleague, friend and a cochlear implant mentor. Let me tell you about today's guest. Dr. Sam Atcherson.  Dr. Atchersonis a bilateral cochlear implant user, and a long time user of hearing aids.

[00:01:46] He received his bachelor's and master's degree in communication, sciences, and disorders from the university of Georgia and his doctorate in audiology and speech pathology at the university of Memphis. He is currently professor of audiology at the University of Arkansas for medical sciences. He has given over 200 presentations at local, regional and international levels.

[00:02:13] And he is an author. or a coauthor, of over 50 peer reviewed articles, 22 books, chapters, and three books, his research and clinical areas of interest include face mask related to speech perception and acoustics, auditory electrophysiology, audiologic rehab, and health literacy. He serves on the board of directors for the accreditation commission, but audiology education.

[00:02:45] And then the board of trustees as vice president for the Arkansas School for the Deaf and Blind and Visually Impaired. He is the co-founder of the Association of Audiologists with Hearing Loss, a former president of the Association of Medical Professionals with Hearing Loss and one of the original founding board members of the Arkansas Hands and Voices Chapter.

[00:03:12] Today, I'm not only excited to learn more about Dr. Atcherson’s  research and study, but I'm also looking forward to hearing his journey, um, from hearing aids, the cochlear implant. And I'm so excited because by storytelling, we really can share it and empower others who may be on that hearing journey.

[00:03:34] So welcome. Dr. Atcherson. Thank you for being on this podcast. 

[00:03:40] Sam Atcherson: Thank you, Carrie. Please call me Sam. We are friends. We are colleagues. Um, and it's weird to hear my bio, but, um, I'm proud of it. Um, I wouldn't be where I am without, um, audiologists and speech pathologists and my, uh, childhood and upbringing. So anyway, I'm so glad to be here.

[00:04:03] Yes. 

[00:04:03] Carrie Spangler: Well, thank you, Sam. I'm so excited for you to be here too. And I was just trying to think, we've known each other for a while.

[00:04:10] Sam Atcherson: We have. And I was racking my brain, trying to figure out when we actually first met. And I still don't even know that cause really cross paths so many times. Um, but since you had mentioned in my bio, um, the association of audiologist with hearing loss, um, I do remember.

[00:04:36] Treading a round table request for audiologists hearing loss. I think there's sort of back in 2001 and you probably came to one of those very early on, and that was probably my first introduction to you. Um, but yoyu, you ended up being one of those rising stars too. And so we've been able to do this.

[00:05:01] Follow each other's trajectory. Um, and we've gone on to do some great things. 

[00:05:07] Carrie Spangler: Yeah. I know I was thinking about that too. And I have specific memories of, um, I think Clarke means steam. We were both there and you were the, I think the keynote at that point in time and I was helping with the teen program.

[00:05:26] And you ended up coming over and spending time with us and the teenagers, which was a really great experience too. 

[00:05:35] Sam Atcherson: That was so fun. And, uh, I think there were a couple of other colleagues of ours. Um, wasn't there a physician with hearing loss too, and he was helping out. That was a great time. That was a great time.

[00:05:47] That was a 

[00:05:47] Carrie Spangler: great time. It was so, yeah, I'm sure. Although moments will come, come through, um, as we have this conversation today, but, um, Sam, I would love for you to share with our listeners a little bit about your hearing journey growing up. 

[00:06:05] Sam Atcherson: Oh, my, um, it is the question when people want to really get to know me.

[00:06:11] And I've tried to tell that story to my students. Um, it gives me a little bit of credibility if you will. Um, well, the story kind of goes, I was probably born with normal hearing. Um, as far as we know in my family, I am the only person, um, in our family tree going all the way back to my great, great grandparents on either side to have any kind of hearing loss like I have.

[00:06:44] Um, so the way my parents tell me I had a babysitter, her. Thought that I really wasn't responding to sounds in my environment. And so my parents recall just kind of blowing the babysitter off. They're like out now, he's a boy. He's hard headed. Listen anyway, but I don't know. One thing led to another and I think they started noticing it themselves.

[00:07:13] Um, my father was in the air force, so we went to an air force hospital. Has had an ENT look in my ears, didn't see any signs of infection or anything. So, yeah. That was the first referral to an audiologist. Um, and of course at my age, at the time, I think it was three and a half or four. I can't remember exactly from their story.

[00:07:38] Um, but they put me in a boothhad headphones on yet. And they'd got minimum response levels that was skirting on a mild to moderate hearing loss. But again, I was just the better ear. Right. So. Um, as a typical audiologist would do, let's see you back in three months or six months or whatever. And they started seeing a pretty rapid progression.

[00:08:07] Um, I think it had dropped to about a moderate to severe hearing loss. By the time I was five or six, and then it just stabilized for a little while, but because of that time period, They very quickly enrolled me in a pre-K program with other deaf and hard of hearing kids. And that was the first time I had ever seen other kids with hearing aids  and, uh, I noticed some of the other kids were wearing colorful ear molds.

[00:08:38] So I was like, I've got to get some too. And I think I had red, um, And what I was said also about that time period was I was in Denver, Colorado, and rehab relapse, some colleagues in Colorado and they led the country. In leading efforts in early intervention. Um, and so everything was taken care of in Denver, Colorado.

[00:09:04] I mean, I, I had itinerant teachers. I was in a special classroom and first and second grade with peers and also we're hearing aids and we were all oral. I don't think I was exposed to sign language until middle school. Um, But I'll tell you more about that in a little bit. Um, but anyway, so my time in Denver was great and then my father had to be stationed somewhere else.

[00:09:31] So we went to New Mexico and not trying to throw anybody under the bus or any state, but. The services in New Mexico, where I lived was not the same at all. And so we started seeing some, some difficulties in the classroom, anyway, so as I moved in various places, um, the thing that really changed my life and taught me self advocacy skills was when I ended up in Portsmouth, New Hampshire.

[00:10:07] I was there in um, eighth grade and ninth grade, sorry. From the time I left Denver to the time I was in New Hampshire and high school, I was in public school with very little services at all. I might've had a speech pathologist. I certainly went to audiologists for regular checkups, but no one was really keeping an eye on me.

[00:10:34] And it wasn't until I was in New Hampshire, that I was again, placed in a classroom for one hour at the end of the day. With other students with hearing loss, some signed, some were oral, and it was there that I learned how to read an audiogram for the first time there was there that I learned how to sign.

[00:10:58] And I discovered there was another way to get information. Um, and I joined a boy scout troop there that also had deaf. Children. Um, and so, oh, and I, I learned how to use a TTY.  I was just exposed to things that I have never been exposed to up until that point. And that really helped to set the stage for my future.

[00:11:28] I'll just share one more thing about my childhood. Living in New Hampshire really helped me to identify who I was and who I could be, but I have to give credit to my grandparents. I lived with them in sixth grade and seventh grade in Maryland. And during that time, my grandparents taught me the value of hard work.

[00:11:55] They taught me to pay attention to school and academics. Um, they fought with the board of education to make sure that I was placed, um, and, and an appropriate classroom setting. Um, I got my own personal FM system at that time. So, um, that. That period of my life is what helped me do better in school and pay more attention and take pride in my work.

[00:12:26] And then I got the self-advocacy skills in high school and that's just carried me through. 

[00:12:34] Carrie Spangler: Wow. That's great. Like, and just some of the things you said, I just like making my wheels turn right now. I mean, you know, you start out in Denver with like basically the great, you know, spread of all kinds of services.

[00:12:50] And then to know that. From one place to another. It's so vastly different. And, um, and unless parent, so empowered with information. And thankfully you started in Denver, so that at least you had an idea or your family had an idea of what they could ask for what you should be getting, because if you would've started in New Mexico, your parents may have never known that.

[00:13:20] You should have had any of these types of support. 

[00:13:24] Sam Atcherson: Absolutely. Absolutely. 

[00:13:26] Carrie Spangler: So, yes, we have a lot of work to do in education, but I love the fact about the self advocacy, because I think that's a skill that we can start with kids when they're preschool. And it takes if the lifelong skill that kids and adults who are deaf and hard of hearing need to have.

[00:13:46] Um, and, but you did mention that you were in a class at the end of the day, for an hour with other peers who were deaf or hard of hearing. And how did that help you? How did the having other peers, any of the mentors for you, 

[00:14:03] Sam Atcherson: or did that impact you in any way? Oh, my, uh, I spent a long time since I've thought about that, but this is what I was say.

[00:14:12] Um, we probably inspired each other for different reasons. For me though, personally, I felt. Alone and isolated, you know, in all these years of school, without other peers with hearing loss, I really felt like no one understood what life was like for me. And then suddenly I'm with peers that are the same age, we're all teenagers.

[00:14:43] We're kind of going through this, you know, personality development, trying to figure out who we are. And it was really cool for me to see. Otherwise, well adjusted deaf and hard of hearing kids. Um, Being good at what they do. I think it gave me some self-esteem that I didn't have. It gave me a little bit of courage, um, uh, learning sign language at the time.

[00:15:15] I don't use sign language as, as my primary means of communication, but I've used it socially. I use it to work with patients if I have to, but learning sign language opened my world. Socially, at least at that point in my life. Um, um, I'm grateful for it. I'm absolutely grateful for it. Um, part of the isolation and feeling lonely was I didn't get the side conversations that other kids were having.

[00:15:51] That was no longer an issue. Um, when I was around my deaf and hard of hearing peers. Um, so that was great. They were just really great. 

[00:16:00] Carrie Spangler: Yeah. I know. I w most of our kids are in the mainstream and they don't have those opportunities to meet others. And I know from my own experience, you know, Karen MacGiver-Lux, uh, she was like the first person I haven't met with.

[00:16:18] You know, who was wearing hearing aids at the time. And I went to, and she was going to college and I was starting college. And I thought that was such a pivot point in my life where I was like, oh, there's someone else like me out there. It was like, like what you said, that kind of self-esteem. And, you know, having someone that.

[00:16:40] Was relatable to you in the same situation, so that it's important to have those peers. And we still do. We have a 

[00:16:49] Sam Atcherson: whole network. I keep collecting them. It's like Pokemons. I'm just like, oh, this person, this person. And. Yeah. I no longer feel alone. Yeah. Yes. 

[00:17:01] Carrie Spangler: So, and I just have to say, and it kind of gets to my next question about your cochlear implant, but you were like one of my, um, messenger audiologist with cochlear implants and my group texts when I was pursuing that path just a short time ago.

[00:17:21] But what, at what point did you pursue that cochlear implant? 

[00:17:27] Sam Atcherson: Oh, my, um, So let me backtrack a little bit. So when I was in my master's program, I was wearing hearing aids very successfully. Um, this formal instruction was getting a little more difficult because at that point I think I had a severe to profound hearing loss, but I was doing well.

[00:17:57] By anyone's standards. And so no one ever pushed, no one ever pushed me or encouraged me to get a cochlear implant. Um, and then somewhere close to the end of my master's program. My great aunt who, who passed away a few years ago, she lived in San Pedro, California. Um, right outside of Los Angeles, she attended.

[00:18:26] Some kind of a workshop and they were talking about cochlear implant technology, and they were talking about the research that was coming out of House Ear Institute. And she was so inspired by this technology that she have never heard of before that she called my grandfather, told him my grandfather called my dad, told him, then my dad called me.

[00:18:55] And says, Hey, Sam, your aunt called your granddad, your granddad called man, I'm calling you, have you ever heard of a cochlear implant? And I'm like, yes, dad, I'm in graduate school. I've learned about cochlear implants, but we're still talking 20 years ago or more. And I said, you know, dad, I'm just kind of at this point where if my hearing goes.

[00:19:23] It goes, I know, sign language, I belong to a deaf and hard of hearing community. I might still be able to function as an audiologist, just in a different capacity hours, like ready to go deaf if I'd had to. And I could just hear figuratively my dad's heart break. What I didn't consider in that moment was so what.

[00:19:52] I can communicate with people in the deaf community. What I was effectively doing was cutting off my family. It just did not register in my brain at that moment. And so there was probably weeks or months after that, that I finally started thinking, well, I don't need a cochlear implant right now, but I'll cross that bridge if something changes.

[00:20:24] So fast forward to my first year in my PhD program, I went straight from the master's program, right into the PhD program. My hearing started to change.  The content. Uh, uh, of my PhD courses was getting harder. I was having difficulty understanding some of my professors. So I started mentioning about the cochlear implant again, and with that hours, like what the heck?

[00:21:00] Why not just go and do a cochlear implant evaluation. See what they say? And we'll make some decisions as a family. What I didn't know at the time was that my aunt was willing to write the check for the entire surgery. Hmm. Wow. And I saw her, right. It. Hmm. Um, she really, truly gave me the gift of hearing back in 2001.

[00:21:33] And. To honor her. I went all the way to Los Angeles, California to do the surgery. So she got to watch the whole thing. She was there when I woke up after surgery, she was there along with my dad when they activated the device for the first time. Um, I know I wouldn't be where I am right now, as far as I've gone without the implant.

[00:22:01] And I'm not saying that. Everyone needs an implant I'm saying for me, it opened doors that I don't think I otherwise would have had. If I was just wearing hearing aids, I would have found a way to succeed no matter what, but this was life-changing for me. Wow. 

[00:22:23] Carrie Spangler: That's so amazing about, you know, you get to.

[00:22:27] It was the, um, the coconut implants went covered at that point in time through insurance 

[00:22:34] Sam Atcherson: while I was still in school. So I didn't have the kind of insurance that would have covered it. Right. Um, 

[00:22:40] Carrie Spangler: basic level insurance 

[00:22:42] Sam Atcherson: at that time. Um, before we move on, I want to share one other interesting story related to all of this.

[00:22:50] When I went and had my cochlear implant evaluation. It was there. They discovered that I had large vestibular aqueduct, but it saw my CT scan and course up until then we had no idea why I'd have hearing loss because no one else in my family had hearing loss. So it was kind of an interesting feeling and moment to go, oh, I now know what caused my hearing loss.

[00:23:22] I now know why there was progressive. I now know why. And he kind of rough sport that I did probably contributed to those changes in my hearing. I do remember getting hit in the back of the head when I was working, um, at big glass. Um, it's a, um, That's a big store, like a Walmart or something. So anyway

[00:23:46] Anyway, I was hanging up hammers and the, the wall buckled and all these hammers started dropping on my, I wasn't injured, but it did change my hearing. So when I got  that news, I sent an email to my entire family and I said, I now know why I have hearing loss and guess what happens? My grandfather sent me an email back.

[00:24:18] This is hard.

[00:24:23] Wrote me an email saying that he was so relieved to know that that was the cause because when I was around three or four years of age, he came to visit me and my family. My parents went to work. My granddad was at home with me. I put on my Superman costume and I wanted to show my grandfather some tricks.

[00:24:53] So I'm jumping back and forth between two beds. My last step I misstepped and I hit my head really hard on the side post of the other bed. And it was right around that time that my hearing loss was diagnosed. My grandfather held for over 20 years, guilt that he had caused my hearing loss. He never told anyone else about it.

[00:25:23] Carrie Spangler: Wow. That's a lot hold on right?

[00:25:26] Sam Atcherson: 

[00:25:33] Carrie Spangler: But I always feel like. I experiences as audiologists to, you know, have hearing life, like just your story right there, finding out during a cochlear implant process about EVA, I'm sure you have a patient that you would want. It'd be like, okay, we're getting an MRI. You need to get an MRI or, you know, like, not that you would prescribe that, but you would recommend that.

[00:26:00] Because just the things that our experienced that we went through, I think make us stronger. However, we also have this insight and intuition in us that says, Hey, maybe you should look further into this or that because of our own experiences. 

[00:26:19] Sam Atcherson: I hope it makes me a better investigator, a better diagnostician, um, But most importantly, I think living with hearing loss has given me a sense of, uh, empathy, um, how I want to share about the whole person and not just what's on the audiogram, what I got from them in the booth.

[00:26:47] And I think that's something that good audiologists do anyway, whether you have hearing loss or not, we just need to be able to see the whole person. Yeah. 

[00:26:58] Carrie Spangler: So kind of backing up a little bit. I know you said in grad school, and when you started your PhD is kind of when your hearing had dropped a little bit more for the, um, and you pursued that cochlear implant path, but how did you pursue the field of audiology?

[00:27:13] What got you started?

[00:27:18] Sam Atcherson: I'm laughing because. Right. So when I, when I was in high school, I got called into what I thought was going to be the principal's office. Well, actually it was a guidance counselor who wanted to talk to me. And so the guidance counselor noticed that I had a really high GPA and wondered if I had thought about college.

[00:27:43] I hadn't even thought about college. I was just so focused on graduating from high school and getting a job somewhere. So I bring that up because it was this guidance counselor that really got me thinking about higher ed to begin with, which meant. What do you want to major in? I don't know. Well, what are you good at?

[00:28:09] I'm good at art. I work in a restaurant with my mom. I'm good at cooking. I have good customer service stills. I'm like, I don’t know. So I ended up taking, uh, Uh, I don't know what they're called now, uh, of jobs. Oh, like a career inventory, their inventory. Right. And it says something about, um, health care. And so I chose.

[00:28:42] A field that I thought would allow me to be in healthcare, but not have to work with patients directly, or this is the extent of my knowledge. Okay. So it has nothing to do with any of the disciplines out there. They're all wonderful. But I was like, well, I don't want to be on the front lines working with patients.

[00:29:02] So I'm going to do pre medical technology. But I'm going to completely embarrass myself here because at the time I had no idea what that was. I just thought I'd be working with computers or doing something in the healthcare field. So I'm in college and that's my major. I'm taking all the biology, the chemistry, the human anatomy, I'm doing great and all of those things.

[00:29:30] And then I needed new hearing aids. So at that point, I was living with my mom to spend the last two years of high school with her. My parents divorced when I was seven. So I wanted to spend time with my mom before I became an adult. Um, so I go to an audiologist I had never seen before. Um, and his name is Richard Wright.

[00:29:58] He passed away to cancer probably about 10 years ago. So I miss him. But when I came in, my mom has sent him some of my old audiograms and he thought I was completely deaf and probably signed and he's freaking out thinking he needed to get an interpreter somewhere. And here I am, I show up and I'm talking.

[00:30:24] So he does the evaluation? My hearing hadn't changed much, but yes, I needed new hearing aids. Well, during the counseling session, he asked me, um, what I was majoring in, in college. So I said pre medical technology and gosh, oh, health care. That's cool. What do you think about audiology well I blew him off

[00:30:51] Because I was like, How am I going to be able to do the speech test? You know, that thing like he's like, well, we have speech materials on CDs. Now you don't even have to say those words yourself. And clearly you're a good lip reader. I still blew him off. Well, as year later, I go back for my annual checkup.

[00:31:16] See how my hearing aids are hearing. See if my, my hearing has changed and he had just hired a new audiologist and her name is Kim Carr, and I'm going to embarrass myself again. I thought she was the most gorgeous woman I had ever seen in my life. She asked me the same question. What do you think about audiology?

[00:31:41] Well, I didn't say yes right away. I said, well, that's what the other guy asked me last year. Why should I go into audiology? And so she was sneaky about this. What she did was she asked me if I would come and speak to parents of children with hearing loss. So I said, sure, what am I supposed to talk about?

[00:32:06] She said, just talk about your life and answer the questions that they have. And that was the pivotal point for me. I saw the difference that I could make in the lives of parents who have children with hearing loss. And so after that, My audiologist. Kim asked me if I get an application from the university of Georgia, would do you at least fill it out and send it in?

[00:32:37] I said, yes. Um, that's how the story begins. Wow. 

[00:32:44] Carrie Spangler: That's awesome. It's always interesting to hear how I, you know, peeps, who I audiologists who have have grown up with hearing loss, how they kind of got navigated. Into the field. And my story is very similar. It was my audiologist who I was going for annual hearing test.

[00:33:06] So I'd, have you ever thought about audiology and I was undecided health. Major. 

[00:33:16] Sam Atcherson: We have parallels too. I 

[00:33:18] Carrie Spangler: know. Right? So it was, I had no idea. I don't think many people know what they want to do at age 17 or 18. And I did the same thing career invetory and  and said, I might be good working with people. And so I chose.

[00:33:35] Health care as a, you know, more broad and a couple of years later, okay. 

[00:33:42] Sam Atcherson: I'm going into audiology,

[00:33:48] Carrie Spangler: but kind of goes back to grad school. And once you got accepted, did you have any road blocks going, you know, getting through your graduate program or your Ph program or PhD program because of your hearing challenges? 

[00:34:07] Sam Atcherson: Um, I did not. Other than what I was saying earlier. Um, the year prior to getting my cochlear implant, I did have struggles, but I also knew that the rehab period would probably be difficult.

[00:34:25] And so I spoke with my major advisor and, um, The advisory committee and they allowed me to go part time, not really part time, but I lowered the number of credits for a couple of semesters to let my brain catch up and do a lot of intensive rehab. And that was actually great. I still spent a lot of time in the lab, but I didn't have the demand of the coursework.

[00:34:54] Um, and once that was over that the thing that changed was. I went into a PhD program thinking I would never be able to practice clinical audiology again, after getting the cochlear implant, I ended up getting my license in audiology and started practicing. So that doors swung wide open for me. Um, I would say the only real road block I had was.

[00:35:26] Learning how to do audiology as a person with hearing loss.  That's what got me thinking about our group. My next 

[00:35:41] Carrie Spangler: question,  into that. So, because of your own experiences, you started thinking about this group that you needed to get together. So can you share 

[00:35:53] Sam Atcherson: a little bit more about that? Yes.

[00:35:55] Um, and if you're looking for anybody else to bring onto your podcast, um, you have to bring Suzanne Yoder into the mix and it's because, um, Around that time. ASHA someone had asked her and I wish I knew who it was. Um, but someone at ASHA had, um, contacted me about a student at the university of Pittsburgh with hearing loss and wondered if I would be willing to talk to her about what’s like and I'm sitting there going, I'm still in school, you know, but.

[00:36:34] Fascia already knew. I had just gotten a cochlear implant. It was in the ASHA leader. Um, you know, I had finished my master's degree and was now working on a research doctorate. And so I just thought that maybe I might be a good person for her to just bounce ideas off of, and Suzanne and I started emailing quite a bit and we realized that we had many of the same questions.

[00:36:59] How are we going to do speech audiometry. Um, how are we going to check hearing aids? Um, what, what happens if we don't understand what a patient says, what are some strategies that we can use to compensate for our own hearing loss and still be able to provide high quality services. And then we went to.

[00:37:25] One of the, uh, American academy of audiology meetings. And after that meeting, we realized how difficult it was for both of us just to attend the meeting. There was noise. There were people who were giving presentations and not repeating the question. So we had no idea what question was being asked by a member of the audience.

[00:37:50] We went to sessions. where the speakers would turn the lights off so we no longer could see face. I mean, it was just, so what did we do? We wrote article for audiology today called the Irony of Audiology. And I think AAA paid attention to some of that, that instead of us, um, Uh, sending a proposal every year for a round table.

[00:38:19] Yeah. They just said, Hey, did you need space this year? And so they've always created a space for us. Um, but they've provided, um, um, captioning, interpreters, uh, for that meeting specifically. And that's been great. And so from there, The group just grew, but we weren't just the association of audiologists with hearing loss from the get go.

[00:38:45] It was really more of a support group. Um, and what I was said has changed over the years is the people who came the first couple of years were really angry people. They came because they felt, I mean, we're talking 20 years ago, right? We had people come angry that they didn't get the support that they needed when they were in graduate school.

[00:39:13] Now talking about today, you don't hear that as much. Of course, every student is different. Every individual needs different things to be successful, but you don't hear that level of anger anymore. What you now see is all right. I'm having this problem. What solutions do you guys have? And we've just all jumped on that.

[00:39:38] We have a Facebook group page now for you to have a webpage. It probably needs some updating, but I, again, for the second time in my life, I don't feel alone, not as a person receiving loss and certainly not as an audiologist with hearing loss, there is no excuse anymore. I 

[00:40:00] Carrie Spangler: know, and I, how many people right in that Face book group 

[00:40:04] Sam Atcherson: group, um, This might've been a couple of years ago when I checked, I think they were like a hundred over a hundred people subscribed to it, and that could be unilateral, unilateral hearing losses.

[00:40:21] Bilateral hearing is. Um, cochlear implants. We might even have some people in there with auditory neuropathy spectrum disorders, um, some have private practices. Some are in universities, some are in hospitals. I mean, it's a very diverse script.  

[00:40:40] Carrie Spangler: is, but I agree too, to have that support and to be able to mentor the younger, um, rising professionals, I think is important to you.

[00:40:53] And I think you, like you said, you've been contacted by other. Uh, professors at other universities who are kind of trying to help someone navigate. So how, how has that changed you? Can you share some experiences of being able to mentor those students? 

[00:41:12] Sam Atcherson: Yeah, absolutely. And I won't, I won't name specific schools or students, but, um, you know, some schools for whatever reason might have more students with hearing loss than others.

[00:41:26] And it's typically the schools that don't get students as often when they start searching around for, for help. Um, they'll often find me. Or maybe Suzanne or the association of audiologists with hearing loss. But if they're, if they're already in an academic setting and they know that I'm in an academic setting that’swhen they're like, okay, I'm just going to go straight to the horse's mouth.

[00:41:52] Um, and so we started having conversations about how can I help my student in the classroom? What has worked, what hasn't worked. Um, how do you guys You know, provide funding for captioning or an interpreter? And I may not have all the answers for that, but I certainly can point them in the right direction.

[00:42:14] Um, but probably the single biggest question is how can I ensure the students will be successful when they go off campus? Yes. And I think probably the number one answer is you've got to teach that student how to advocate for themselves. And you're not in your head because you and I wrote an article on this very thing.

[00:42:41] Um, they've got to learn their skills in graduate school, or they're just going to flounder when they're. When they graduate and, and they're having to do this independently, so why not learn it now in graduate school and what I would consider a safe space? Um, yeah. Also during that time, you really should look closely at the technology that they're using and do they need to be making some changes like now that will set them up for success in the future.

[00:43:18] So those conversations can go. And a number of different directions, but ultimately, ultimately that comes down to how can I help my student be successful in the classroom and in the clinic? Yeah. 

[00:43:35] Carrie Spangler: I agree with you a hundred percent, because I think a lot of students who decide to go into audiology, they grew up.

[00:43:44] Kind of like we did in a more mainstream setting. And I mean, you were lucky to have that advocacy support, but I wasn't. So I didn't know what to ask for. I mean, other than knowing I have a hearing loss, like you're learning along with you, classmates about audiology, except that you have, you know, personal experience, but.

[00:44:05] I agree that advocacy and being okay with sharing your story and what you need and how someone else can help you is really important. And the technology piece, a lot of those students haven't used a DM system or captioning or anything before. In fact, these are things that are going to really open up 

[00:44:30] Sam Atcherson: doors for you.

[00:44:30] Yeah, absolutely. Absolutely. So tell me 

[00:44:36] Carrie Spangler: a little bit before we kind of wrap up today, I would love to hear a little bit about some of your PhD research and what your favorite part of research is right now. 

[00:44:49] Sam Atcherson: Um, I'm laughing again because I spent five and a half years of my life learning everything about electrophysiology, you know?

[00:45:03] Um, I don't regret any of that training at all, because I think that training helped me understand the importance of plasticity in the brain. Okay. And. I knew that if I could at least learn that I could apply it to other areas of audiology. My mentor told me that part of going through PhD training is to prepare you to be an independent researcher, no matter what your topic area is.

[00:45:39] But certainly if you want to be an expert at a particular area, you have to do the time. Okay. So just because I switch from one thing to another, doesn't make me an expert at the next thing. You have to really get into the literature, learn what the problems are and try to be part of the solution.

[00:45:59] So I still dabble in electrophysiology a little bit. I'm fascinated by it, particularly with technology that works well and you see evidence of that change in the brain, but there. Other people that are far better suited to do that kind of research. But I certainly like to share that research with my patients, with my students.

[00:46:26] What I've been doing lately is I think I'm uniquely suited. As a scientist that can help people with hearing loss in a different way. Vocationally. Um, so you had mentioned in my bio that I've been part of the association of medical professionals with hearing loss, and these are. What I would consider very high caliber people with hearing loss who have gone above and beyond, and they are truly helping other people and their only obstacle hearing loss.

[00:47:08] So when I joined that organization, I was. Maybe one of two or three audiologists there, everyone else was like either a physician or a nurse or a dentist. Um, you name it. I very quickly learned one. Stethoscopes was a problem and two face masks were a problem. So very early on, I tried to see how I could.

[00:47:43] Assess study  the use of stethoscopes. So, um, I started doing some recordings with conventional and amplified stethoscopes, and one of the most important things I've learned in my research is that hearing aids and cochlear implants because of the design and the size and shape of the loudspeaker and the microphone, they don't.

[00:48:12] Amplify low frequency signals very well, fast, problematic when you're trying to listen to some very low frequency heartbeats. Okay. So when I started sharing that information with my colleagues, they're like, well, that explains everything, you know, because no one else had explained that before. Um, and. And now we're starting to see some newer, um, amplified stethoscopes.

[00:48:45] They're certainly amplifying things better. They're saying, just take the implants off, take the hearing is off use headphones, which will boost the low frequencies. And you'll be able to hear everything was this. You hear everything including all the noise in the room too, because it's so sensitive. So, so I'm still trying to help.

[00:49:07] Um, solve some of barriers, um, uh, problems and answer questions about that. But because hearing is, and cochlear implant technology seems to be. Changing all the time and everyone wears different devices. It's really hard to tell any one person exactly what to do. So I have to deal with this on a case by case basis, and I've been able to help some people in that regard, the face mask stuff.

[00:49:41] I was doing this before. COVID 19. Okay. I simply wanted to find out, well, one. Does the use of face mask alone, distort speech to the point that we should be paying more attention to this? The very first study I did was, uh, uh, using dental office noise. Um, and we used the connected speech test as the material that our participants would have to repeat and the presence of dental office noise.

[00:50:19] We did normal hearing and we did moderate hearing loss and. And yes, noise was a problem for both of them, but to a greater degree for the individual with moderate hearing loss. And this was the, the non transparent or opaque mask. But what we didn't know was how it affected people with severe to profound hearing loss.

[00:50:42] So I did another study later and that study also incorporated the transparent mask too. And we saw that. Um, just to summarize it really quickly, um, the severe to profound listeners benefited from the transparent mask, um, and they were affected by the noise in a different way. But what I wasn't prepared for is that we had some participants who didn't wear hearing aids at all.

[00:51:13] And they weren't affected by the noise. So they were completely dependent on what they could see on the mouth. So they had 0% with the opaque mask, but with the transparent mask, they were getting like 20%. Correct. I was like, wow, that's really cool. So that led me to working with one of the inventors of a transparent mask, um, Genie Han.

[00:51:41] She invented the face view mask. And so we were able to get some NIH funding. So I did another study and I'm working on the results of that for publication. Um, but during COVID, since everyone was wearing the mask and. An article came out very early on. I think it was February saying that surgical mask and N 95 mask were lowering and distorting speech.

[00:52:13] I jumped on that because my question was, if that's what's happening to surgical mask and 95 mask, what's happening with the transparent mask. Matt, you have this other barrier in front of your lips. And so I was starting to see levels drop like 12, 20, 28 dB, if you will. And so one of the best ways that I've heard this being described as that, if you have normal hearing.

[00:52:49] And you're around people waving masks.  It like, you have a mild hearing loss, but what if you have a moderate hearing loss, man, you just made that hearing loss even worse because of the presence of a mask. So that's what I've been working on these days. Um, and now that people are getting vaccinated and the restrictions are being relaxed in health care.

[00:53:18] Masks are not  going away. So I'm going to continue this, this line of work. Um, and, and hopefully that helps because it all started with how can I help my colleagues and medicine and nursing and dentistry when they have to wear a mask and they'd have to communicate with their colleagues who were also wearing masks.

[00:53:42] Carrie Spangler: Right. No, it's such timely research obviously with our whole pandemic, but at the same time, like you said, there's always going to be situations where masks are going to be needed and to be able to have solutions for accommodations and support is really important as well. Not just, you know, your research is critical because it's going to give the facts and the bottom line of why we need to have certain accommodations in order to support our patients or our medical.

[00:54:15] You know, faculty and professionals as well, so 

[00:54:20] Sam Atcherson: important similarly. So that's, that was the conclusion of the most recent paper that we had published. So what mask obscure muffle reduced the intensity of speech? We now have to think about solutions. So if you wearing them, what can we do to overcome that?

[00:54:40] So, absolutely. I agree with you. 

[00:54:43] Carrie Spangler: So just to wrap up, this has been such a powerful great content conversation. Is there anything that I didn't ask you that you were like, oh, I hope Carrie asked me this on the podcast today. 

[00:54:56] Sam Atcherson: Um, you know, as I was doing  this podcast with you, I talked about my aunt and I've talked about my grandparents, but I also want to give a lot of credit to my mom and dad.

[00:55:08] Um, my mom and dad treated me as if I were any other kid. And I think that is so powerful. You know, I can say that my grandparents did this, my great aunt, the desk, but what my mom and dad did for me was because they didn't treat me any different than anyone else. It made me believe that I could survive in this world.

[00:55:39] And they provided the things that I needed. They provided the opportunities. Um, they continued to support me in any way that they can. But because they are not treating me any different, that just builds me up. And, and I hope that parents do that for their kids. Um, whether they have a hearing loss or not a disability or not a difference or not, but the role of parents is so important.

[00:56:11] And I, I really appreciate my mom and dad for that too. Um, other than that, Sometimes, I feel like my story, isn't all that unique. Um, because I I'm inspired by others, um, including your story too. Um, but we are living in a day and age where it doesn't have to be about I can't anymore. Sometimes it's just a matter of finding the right solutions and having the right support team behind you.

[00:56:44] Carrie Spangler: Yes. I agree. A hundred percent. Well, Sam, I am so glad that you were able to come on to the empowEAR audiology podcast. And I know that your story is going to inspire families, going to inspire adults who are on this journey and the professionals who are out there who need to hear. The story as well. So thanks again.

[00:57:08] And I'm going to have you, is there any way that people can get a hold of you if they have any questions and I can definitely link your information to the show notes of the podcast as well.

[00:57:20] Sam Atcherson: Absolutely. Feel free to give them my, um, you AMS email address. Okay. I will. I love people all around the world. 

[00:57:30] Carrie Spangler: Well, good.

[00:57:31] Well, I just want to thank you again, and I want to thank all of our listeners for listening and tuning in to empowEAR Audiology. And if you like this, please, um, give a favorable rating and share this podcast with your friends and family and colleagues. So thanks again. 

Thank you Carrie

[00:57:52] Announcer: This has been a production of the 3C Digital Media Network. .