Read the full transcript here

On this episode of the All About Audiology Podcast, Dr. Saperstein welcomes guests Justin Osmand and Valerie James Abbott to discuss their experiences surrounding late-onset/identified hearing loss. 

Valerie James Abbott, author of the book Padapillo, shares the story of her youngest daughter, Bridget. Bridget passed her newborn hearing screen but as the years went on, was diagnosed with late-onset hearing loss. 

Justin Osmand, of the Hearing Fund Foundation shares his story of late-identification at age 2 as hard-of-hearing, and how his family approached his education.

This week on the All About Audiology podcast:  

• 2:30 – Bridget’s preschool teacher told Valerie that something seemed to be up with Bridget’s speech. Many times it’s teachers or people from outside the home who have a frame of reference of other kids to point out a child who is struggling. 

• 8:00 –  It’s very common for HoH and Deaf children to be visually aware of their surroundings. Older siblings may play an important role in visually modeling how to behave or complete tasks.

• 10:00 – Support from family, audiologists, hearing specialists, speech language pathologists, mentors and teachers, can help a Deaf or HoH child succeed. 

• 13:00 – When a parent learns about their child’s diagnosis, parents have a choice of how to react to such news, and it is important to offset such news with as much positivity as possible. 

• 16:00 – Ensuring that family members are part of the hearing loss journey and having representation of such a journey in one’s family are ways to make sure that the affected individual will feel included as a valid member of the family unit.

• 20:00 – Justin was bullied and his older brother stood up for him. From this experience, Justin learned that we have to learn to accept ourselves for who we are, and not what we are.

• 24:00 – Different individuals will feel differently about semantics and terminology that may be used to describe their life story. It is important to not use certain terms lightly in order to not be offensive.

• 30:00 – There seems to be more audiologists attending workshops on holding space, and reading or writing articles about the importance of meeting the emotional needs of their patients.

For more resources and research visit:

All About Audiology Website 

All About Audiology Facebook group  

All About Audiology Instagram

And the Prodana pay-it-forward platform here: https://prodana.org/practioner/lilach-saperstein/audiology-counseling–dr–lilach-saperstein

(Guest Links)

Justin’s foundation: https://www.hearingfund.org/

Valerie’s website: https://www.valeriejamesabbott.com/

Valerie’s book:  https://www.amazon.com/dp/B093YFBGMQ/ref=dp-kindle-redirect?_encoding=UTF8&btkr=1

Mentioned in this episode:

• Dr. House
• John Tracy clinic
• Alexander Graham Bell program
• Quote by Abraham Lincoln
• Dr. Lindsay Cockburn’s post with lots of book recommendations around hearing loss

Related Episodes

All About Writing a Book to Spread Awareness – Episode 78 with Michelle Wagner

Transcript:

Dr. Lilach Saperstein: 

Welcome to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein, and this is the show where we explore audiology from your perspective, the experience that you have at your audiologists office, and everywhere else in your life – at school with your friends, around the dinner table, and how audiology actually impacts your life. That is what the show is all about. And I’m so excited to launch two very exciting things at once with two exciting guests as well. So first of all, we are talking about the launch of an incredible book Padapillo with the author of this book, Valerie James Abbott. Thank you, Valerie for being in touch, for sending me a copy of the book, and sharing Bridget’s story and your family’s story in this lovely, lovely book. We’re gonna dive into that. In addition, we’re also talking about late onset hearing loss and how that experience is also unique and important to address. And with us today, we also have Justin Osman who’s going to tell us more about his journey as well as the incredible work that you are doing. So welcome to you both.

Justin Osmand:

I’m honored. Thank you for what you do. You’re an amazing podcast host. I’m honored to be on your show. Thank you. 

LS:

And hey, Valerie.

Valerie Abbott:

Hi! 

LS:

I’m happy to chat again. I always feel that way when I talk to people and then at a certain point, I’m like, I wish everyone could hear what you just said. So here we are. That’s why you have a podcast. Alright, so let’s start with you, Valerie. And I’d love for you to tell us about Bridget, about your family, and about how this fabulous book came to be.

VA:

Thank you so much for the invitation to join you today. I mean, we have millions of families around the world who share a journey. Although many of us take different paths and ours started back in 2005. My youngest daughter was born, Bridget, and she passed the newborn hearing screen and we had no reason to think of anything. She came home happy, healthy. My oldest child Mary Claire was three years older than her. So I kind of felt a little seasoned, [and] kind of knew what to expect. And when she [Bridget] began preschool at age two, we weren’t expecting anything other than a normal preschool experience. And it was about six months into that experience that her preschool teacher started to say something is up. It was actually during a parent teacher conference. They said ‘Are you concerned about Bridget’s speech or language development?’ And I said no.

LS:

So many times it’s teachers or people outside the home who don’t know your child, and they don’t know what’s normal for them or how they are all the time. To them, they also have the frame of reference of other kids and how children are doing in those environments. So it’s really good that you were able to hear them, that they were able to talk to you. That conversation is really important. And the second point on that is that they didn’t say we have concerns about her hearing their concerns about her speech.

VA:

Exactly. And part of that is because Bridget had become a fluent lip reader – fluent! And so she could understand what we were saying. She was processing it differently, [and] what she heard was different, but it was the preschool teachers who said something is up, and they recommended an early intervention evaluation and that quickly revealed that hearing loss was probably at play. And fast forward a couple of weeks, she was officially diagnosed with hearing loss. She was fitted for hearing aids and you would think that solved the problem and all the panic goes away. But really that’s where the journey just became more intense because so many of our questions were unanswered. How did this happen? When did this happen? Why did this happen? Is it going to be progressive? Is she going to need cochlear implants? Should we be learning sign language? There were all of these questions and not a lot of crystal clear answers – a lot of gray. 

LS: 

In fact, I was speaking to another couple this week – parents to a daughter who’s hard of hearing and they were in this stage at the time that we spoke. And they said we have so many questions. There’s so much confusion, uncertainty, and how do we make her feel that she is not wrong? Or that there’s something that we don’t know what to do. We’re supposed to have all the answers, and we don’t. And I actually told them [to tell] their daughter, who was a little older [as] she is nine, that you are confused and tell her that you’re going through a process of figuring [it all] out. And then now you’re in it together instead of trying to hide from her that this is scary because it’s scary for her so maybe you’re scared together and then that’s actually what she needs. So I think that’s a very common experience to feel and so valid. Thank you so much. I want to jump to Justin. Introduce yourself, tell us your story, and your connection to what we’re talking about today.

JO:

Just to add to Valerie’s amazing story. Everybody has a story, and it needs to be heard, and it needs to be shared. So, thank you for having us on your show so that we can share this. So I was born with a central neural hearing loss, but they didn’t know that at the time when I was born. They didn’t have the newborn screening yet. And so I was almost two years old. I was playing in the sandbox with my older brother who [at the time] is about three or four. And my mom came out to tell us ‘hey, it’s time to come in the house and have some lunch.’ My brother immediately responded, and turned, and went in the house. And of course my back was facing my mom, and my mom kept saying ‘Justin, it’s time to come in.’ And I wasn’t responding. Now that  was kind of the first time my mom noticed that there was something not quite right with me. And so again at that time, there was not a whole lot of resources and tools out there. Again, the newborn screening wasn’t out yet. And so my mom and my dad kind of had a little panic attack like I’m sure you did Valerie, and every other mom and dad out there who finds out there’s something not quite right with your child. So my mom met with an audiologist and they referred us to go visit with Dr. House in Los Angeles. Dr. House at the time didn’t know if it was a conductive loss or if it was a nerve loss. They didn’t know. So they did a surgery on my ear to go in and figure out if maybe one of my bones was missing and maybe if it was something that they could just fix on the spot. At first they thought it was a conductive loss because there was some things in there, but they pretty soon discovered through surgery and some other research that it was nerve deafness. So when they found out and so they immediately put me on some hearing devices to get the brain stimulated and to get me back on my feet – to try to [allow me to] catch up. [I was] almost two years behind my peers, living in a world of complete silence, complete quiet. To me that was just normal, that that was my world. And then I can’t really remember when I was two years old when I first heard for the first time -that’s like 39 years ago. I have a really hard time remembering that, but I can just imagine I was probably nervous. I was probably a little bit scared – like ‘whoa what is this?’ but I do remember my parents put me in this intense speech language comprehension therapy program. I remember they took me all over the country trying to visit with different doctors, and they put me in the John Tracy clinic. Lots of different programs  – Alexander Graham Bell program, all the different things for the oral speech program. My mom didn’t want me to do sign language. She wanted me to try to live a normal life. I came from a musical family so she wanted me to try to fit in as best I could. So I ended up taking about 13 years of intense speech therapy. And I feel like I’m still learning how to talk today. [With] my unique deaf accent, sometimes people ask me, when they hear my accent,if I’m from Canada, or if I’m from Australia, or even England. And I take it as a compliment because I love their accents. But deep down inside, it kind of hurt because I worked so hard to try to sound normal.  But it’s all good, I promise. I don’t have that issue anymore. If anything, I have more fun with that today. That’s just a little glimpse of my story.

LS:

I have a few questions for you. Thank you for sharing your story. I read a little about it, but I’m glad to hear it from you. I take it that was your older brother in the sandbox?

JO:

Yes.

LS:

And I think, you [Valerie] also mentioned that Bridget was not your first so there were older siblings modeling how to behave – like everybody goes inside, so you go inside or everybody’s going to get a cookie, so you walk after them and you get a cookie. And I think that’s also a common experience with children who are not the firstborn, or other children in the house, or other family members, cousins, neighbors. And it’s very common for HoH and Deaf children to be very visual, and be extraordinarily aware of their surroundings visually. I learned that when I was in one of my placements in my training, and the audiologist I was working with was very experienced. We saw a few month-old-baby, maybe six month old – a half-year-old baby, and she said just watching the way the baby was interacting, that their eyes were everywhere, and their head was moving a lot more than a six month old who is hearing. And she already had a suspicion about the hearing levels of this particular child because of the behavior. So that was something that I have learned and stuck with me. When you see babies and toddlers how they behave many times, it can give you some inkling – like if they’re one step behind other children, it might be because they didn’t actually hear the directions to come inside. They’re just doing what everyone’s doing. That’s one thought I had from what you spoke. And then the other part is I’m curious now as an adult, if you look back on what your parents invested in you [as they] took you all those places, and put you in all those programs, and if you can look back on that and see if you today might have done things differently for yourself or if you feel like that was a good choice. I know it’s kind of a crazy thing to say as you cannot go back. And the world is different, things are different. But I’m curious to hear your reflection on what that experience was like for you.

JO:

It’s a great question. Growing up, I was kind of a tough kid. I was a hard child. I feel bad for my mom [laughs]. Looking back now, if it wasn’t for my sweet mom, and my dad, and my audiologist, and my hearing specialist, and my speech language pathologist, my mentor and my teacher, my deaf education teacher – everyone that’s been involved – if it weren’t for them, I swear today I would not be who I am today. But there wasn’t an early intervention in my life. I mean, I know I got caught around two instead of later on. And I know I have a lot of wonderful Deaf friends that kind of have a similar story like me. But they went through a whole different journey than I did. They didn’t have the support. That was the big one. They didn’t quite have the support and the resources and the help like I got. I was lucky and blessed to have [the support]. And so their voices might be a little bit different. They’re amazing signers, and I know Sign Language now. I love it. It’s fun. I have two Deaf uncles as this is all genetic. We got to do some research and find out that we have the same DNA – the same family hereditary genetic loss and they’re older than I am. And of course back then they had nothing like we have today. And so because of the resources and Lilach, like what you are providing for everybody and the education to help us know so that we don’t make those same mistakes back then. So one of my favorite quotes was by Abraham Lincoln: “All that I am and all that I become, I owe to my angel mom.” [And I say this] because she never gave up on me. And there’s another great quote which says:” You may have tangible wealth untold; Caskets of jewels and coffers of gold. Richer than I you can never be- I had a Mother who read to me.”  And [my mom was] just reading with me every day, helping me learn how to talk, because I was struggling to read until I was in fourth grade. I was reading from left to right. And then I go to the next page, and I read from right to left. And I go down and read from left to right. But again, thanks to the people like you, all you people that I just mentioned, you guys are truly my heroes. And I don’t take that lightly. And that’s why I’m here with Valerie to promote this late onset hearing loss because I’m a recipient of that, [I know] Valerie, your daughter [is a recipient of that]. And I know Dr. Lilach, you’ve been involved with many patients like this as well. So I think this is a very important issue that we’re dealing with and we do tend to take action on that.

LS:

Awesome. Okay, great. That leads us right into the next part of our conversation. So back to you, Valerie. I’d love to hear more about the challenges over the years through Bridget growing up, and specifically about how it affected the rest of the family [such as] her older sister, even extended family, Grandma, other people, [and] how other people were reacting to what was going on in your family.

VA:

When Bridget was identified with hearing loss, every single human being connected to our family was shocked. No one could believe it. We were in a state of disbelief. And I think part of that was because we assumed she understood us. We just could not wrap our minds around the fact that this was connected to a significant hearing loss, and there were a lot of different responses to that. There were family members that encouraged us to get hearing aids. There were family members that were really emotionally, really emotionally impacted. I think they felt it more than I thought that they would. And my husband and I, Chris, we really felt strongly that we needed to take a different approach. We need to go all in, go big or go home and bright colors. And one of the things that we did was with all of her hearing aid molds whenever she got new ones, we had color coordinated cupcakes. So the swirl on the cupcakes always matched the hearing aids that she was getting, and she could invite anybody over to celebrate.

LS:

[Chips in]. Hold on. You’re telling me that you had a cupcake party every time she got a new mold?

VA:

We explained to our local baker, local business  what we were trying to do and the first time they were like ‘we don’t get it’ and then when we came and said ‘well, you know they are coordinated,’ they went ‘ohh!’ and so then it was no longer this strange request. And the kids were always excited. You know – ‘when are you getting new molds?’ But I think we did that until she was in middle school. And I think the first time that she got molds out and there were no cupcakes. She was like ‘hey?!’ [Lilach laughs]. And it made it celebratory, and it made it fun, and it made us focus on the positive aspect of this part of her.

LS:

Again, that is so beautiful, and I really hope everyone listening takes that thought – like how to make the experience fun, and celebrate it, and make other people part of it too.

VA:

Yeah, so we came from this place of panic. And not to say that we were no longer panicked. But we were trying I guess in terms of a scale, to offset it with as much positivity as we can creatively think of and we succeeded in that. And Bridget, she is fierce, and loud, and proud, and wears her brightly colored hearing aids even today and with ponytails. She’s always been very just comfortable in it, and we’re grateful for that. And I think part of it is how we handle things on the front end making a very intentional decision. I do think part of it is just who she is, and I’ve tried to share that message of making a choice when a child is identified with hearing loss. We do have a choice of how we ourselves attempt to approach it. And we did that without knowing what that would mean later on.

LS:

Yeah, that’s such an important part of my mission with the podcast, with the retreats that I run, and all of the things that I try to bring to the conversation. It is that something’s going on with your child, but something is also going on for you as a parent, and what are you going to do now? Because parenting – there is no book. I mean, there’s a lot of books but you know what I mean.

VA:

Yeah, my oldest child – she doesn’t remember a time when we didn’t have this, she was so young. But I do have a very clear memory of taking a shower you know, thinking I have five minutes of peace and quiet, which of course was a mistake and my oldest was running into the bathroom and like you have to see this, you have to see this. I’m like, ‘Oh my gosh, can’t this wait? Is it an emergency? Is anything on fire?’ And she was like ‘no, but you have to see this.’ And I pulled the curtain and she showed me an American girl catalog where they had hearing aids. That was the year that they came out with hearing aids that you could accessorize, and she was like, ‘Bridget has to get these for Christmas. She has to get these for Christmas.’ And so even at that young age, she understood the importance of representation and what this type of a thing would mean for her sister. I didn’t teach her that. She just innately knew that that would be important. And I think that’s something that we can all do as we circle around all of our children – that representation is important. And I think that children recognize that before the adults do.

LS:

Yeah, your older daughter. What is her name?

VA:

Mary Claire.

LS:

Mary Claire. So Mary Claire is featured in this book as the main character at points who wants to know why her little sister is getting all these weird tests, and doing all these games, and why is everyone freaking out, and what’s going on? Yeah, and I love that you approach it [in the book] from Mary Claire’s perspective, and that she’s included too. She was at the appointments and you know, she had her own experience with it too. So that’s one of the things I really appreciate about this book. So tell us more about it, if you like.

VA:

So Padapillo is based on the true story of our family journey with late onset hearing loss. And I decided at some point to write it through the lens of an older sibling. And that was in part because I had so many emotions, and so many things that I did, and that we did as a family that it’s easier for a child to admit these things. It’s easier for a child to say ‘What are you talking about?’ when really that’s what the adults were thinking. So it made for a better story to tell it through the lens of the older sibling and I also wanted to recognize that siblings are siblings first and they are very much a part of the journey. Mary Claire, it doesn’t show it in a story, but you know, she was using the tools that we learned in early intervention during their daily play. And we didn’t tell her to do that. She observed that and was like, ‘Oh, is this how we do things now?’ And so the siblings playing was a really important role in the journey and that is definitely highlighted in Padapillo. 

LS:

For sure. Yeah, it’s such a beautiful book. Thank you really again for sharing it with me. And there’s so many incredible books for Deaf and HoH children that people can really find exactly the story that might connect with their family. There are stories. about BAHAs, there are stories about the cochlear implant journey, being older, being younger, new baby. Like all the different versions, I think literature is such an incredible tool for learning overall and seeing other stories. So I encourage people to really look into that. And actually the audiologist, Dr. Lindsay Cockburn, [known as listen with Lindsey,] she has on her blog, like a full beautiful post with lots and lots of books, and the different categories, and I recommend that blog post very often for people who say ‘what books are good for us’, I’m like ‘go look at Dr. Lindsay. She got you covered. She’s got the list.’ I am also going to be having other authors and other books featured further on, in other episodes of the podcast. Because I love the idea that a book is born from your own life experience and what you needed, what you wish you had when you were doing it. So I think it’s incredible. Now she’s [Bridget] 16 years old, and this is going to impact a whole nother generation of young families. So I want to hear from Justin a little more about the other work that you do as well to impact so many families.

JO:

If it’s okay, I’d like to add to what Valerie was saying. I was very, very lucky as well to have an older sibling like Bridget did – you know her older sister Mary – and being able to have someone who can look up to, someone that you can integrate with, feel like you’re a normal person as well. Being integrated with all that and that was so important. But also throughout my life, back 40 years ago, I wore the big white cord coming out of my ears and then had the big box on my belt. Though, as you know technology has come a long way. And unfortunately back then, I was bullied. People didn’t understand hearing loss or deafness very well like they do today. I think it is much more well accepted today than it was 30, 40 years ago. It wasn’t necessarily that they didn’t know much about it. They also didn’t know how to react towards someone that had wires coming down there. It was just so different, and I kind of stood out. But I bring that up because my older brother, he and I luckily went to the same school, he was just one grade above me. And so he was always my brother’s keeper. He always had my back and one time in between class, this was in middle school. You know you had like five minutes to get to the next class. And I’ll never forget, I was in my locker. And I turned around because I got my next book to go to my next class. And these two big kids just shoved me against the locker. They just started making fun of all these wires coming out of my ears, and just horrible things, and no child should ever have to hear. And I’ll never forget, I looked up and they were gone. And my older brother had grabbed both of them and just shoved them against the wall on the other side of the hallway and told them ‘you don’t dare lay a finger on my brother.’ And I’ve never seen them ever since then. But kind of like that, of course it doesn’t make it right. Of course, we should never induce violence on anybody. But it was unfortunate that I went through a lot of bullying, being bullied myself, But it taught me to be more empathetic and [show] empathy towards others. So that’s why it’s so important to educate, which is what we’re doing today. I personally believe that every single one of us has something about themselves that’s broken. Whether it be physically mentally, spiritually, intellectually, whatever it may be, but that is just who we are. And once we can accept ourselves for who we are and not what we are, the way the world looks at it, we will be so much happier with ourselves. Like Bridget for example – Valerie, I love how she accepts herself for who [she is]. And because of that, she’s not ashamed of the beautiful, colorful ear molds because that’s who she is, and nobody should be ashamed of that. I had an identity question growing up. You know, being born into this world renowned musical family and trying to fit in. And it was really hard for me, but until I learned to accept myself for who I was, and not what I was. Bridget is so far ahead of me. She’s already there. She’s already embraced that.

LS:

Do you mind if I challenge you a little bit on the word broken? Because I think a lot of people, especially people in our community, All About Audiology podcast, and our community, There’s a lot of pushback to words like “fixing” or “broken” because there’s this perspective that there isn’t anything actually wrong. It’s a difference. But I also think that sometimes that perspective is used as a way to cover up that there’s things needed [such as] intervention, resources, and help, and access and accessibility. So it’s an interesting semantic kind of dance. You know, people will reclaim the word disabled or even Deaf, which for many years was considered not a nice word, like don’t call someone Deaf or dumb, but even the reclamation of word like disability – that that’s not a bad word. It’s an interesting dance I guess is what I’m bringing up.

JO:

I really appreciate you bringing that up. If I may, may clarify a few things. First of all, I have a really hard time with the phrase hearing impaired. That’s what my parents said, but I’ve tried away from that. I only say deaf, or hard of hearing or hearing loss. Hearing impairment – I don’t like the word impairment. Now when I said the word broken, let me just go in a little bit more depth. So I believe we need to get rid of the misconception or the misunderstanding that just because something in our life is broken, that we’re impaired or disabled. No, it’s not a curse but a blessing. It’s not a penalty, but an opportunity. And so because when I talk to a lot of corporations, a lot of times people have a hard time relating to a hearing loss because they don’t have a hearing loss. But what I tried to explain to everybody is that everybody does have something with themselves; nobody’s perfect. Physically, mentally, spiritually, emotionally, whatever it may be. I believe every single one of us has a challenge that they’re dealing with, or they have some type of a limit or adversity or trial, whatever that may look like in their life. I really believe that nobody is exempt from that. In my case, my ears are a little bit broken. But guess what I have a personal motto, ‘I may have a hearing loss, but my hearing loss did not have me.’ It doesn’t define me. It doesn’t control me. I love my hearing loss by the way. It’s who I am, it’s all of your patients as [it is] who we are. But the thing that we need to be careful with is if we let it hold us back. If we limit that. So in other words, it shouldn’t let us define us, but we should let it re-fine us because our hearing is a little bit broken. And I’m okay to say that, I don’t think there’s any negative connotation to that. I don’t like to sugarcoat things. It is what it is. But because of that, that challenges me – I love the word challenge. And when you say that, that’s a big thing for me – to make me want to be better and to do better. And so, for example, I’ve always wanted to play the violin. And I was told I could never play the violin, because they told me that my ears are broken. But I always like to prove people wrong. And so I learned to play the violin and not by hearing it, but by feeling it through the conductive vibration of the instrument. And so when the world shouts ‘you can’t do it,’ I really believe we can. Again, if it wasn’t for the help like you, Dr. Lilach and Valerie, you instill in us the confidence, that self esteem that we need. Because I would have had this had someone not intervened and helped me through all of this so that we can do what we want to do. So I hope that answered your question. I don’t ever like to offend people because of the word broken, because you’re right. That does have a negative connotation to it. But instead let’s look at it this way: when we have a challenge, we should not let that challenge have us, own us, control us or define us.

LS:

I’m so grateful that you said everything that you just said because the truth is, the kernel is that, everybody on every side of the debate of all different words and different modalities and different worlds, Everybody wants the same which is relationships, community, accessibility, respect, dignity. Everyone actually wants the same for their children or for themselves. There’s just different ways to get there. So if we get stuck on the level of the words, and the terminology, we don’t go forward, but then there is still room for learning. Even in my studies, I learned about hearing impaired as the term and there’s a lot of changes. So another one that I recently have heard is to say what the hearing levels are rather than hearing loss. For example, I know Valerie, you’ve been using the word identified as opposed to diagnosed because it was identified that the child was deaf or hard of hearing. But I do know that it gets dicey especially when there is a medical aspect and then that is diagnosed. So it’s always kind of very case by case. And I hope that people can take away respect for one another and also a lot of self-forgiveness for not knowing what you don’t know until you learn it and just being on a process collectively on the journey of this podcast and with each other in the world.

JO:

I appreciate that. Some people have got to take it with a grain of salt. Sometimes, you know, you hear one thing and then interpret in such a different way. I think there’s no right way for all people. Everybody has a different scenario or a different situation. And so whatever is best for that patient when it comes to communication, when it comes to hearing and comprehension. Whatever it may be. I don’t think there’s one bluebook that will fit everybody because everybody is different. My situation is different than Bridget’s. My hearing is different than everybody else’s. So we just have to be sensitive toward that and be supportive of whatever decision they want to do. But don’t ever let it limit them. You know, don’t don’t limit your challenges, challenge your limits, because I think we all have limitations. I really do. And that’s what makes you stronger and better people. But don’t go about tearing people down when they’re trying to figure things out. But I am grateful that they got rid of the terms deaf and dumb; thank you.

LS:

Yeah, there’s a lot of education that happens collectively. But I also think there’s still room. So we have this conversation a lot around how the audiologist can give the news that the baby is identified, and what that conversation is. If the audiologist comes in and says ‘oh, this is so tragic, I’m so sorry,’ [or something of] that kind of perspective, that’s what the parents get. And there’s a shift there. Valerie, I’d love to hear more from your perspective on that.

VA:

Yeah, I think we’re on the edge of that shift. I really, really do. Both with kind of the terminology and what people’s preferences are and just respecting the fact that there’s actually a wide variety. But in terms of how that initial conversation goes, the day of diagnosis, the day of identification, again, there’s a lot of different words that can be used and families get to choose which terminology they’re comfortable with. We are right on the edge of I think a wave of audiologists who acknowledge the importance of holding space, of recognizing the difficulty of that initial conversation, and subsequent conversations. Physically what happens, mentally what happens when someone receives that information, and how best to work with the family as they go through the process of digesting that information and absorbing it and figuring out what to do. And I’m seeing more and more audiologists attending workshops on holding space, reading, writing articles about the importance of meeting the emotional needs of families, [and] I really feel like we are on the verge of a generation that will have a different experience at the moment of official diagnosis than certainly Justin’s generation and mine than that of my children. I think it will be different for them. 

LS:

I hope so too. A hopeful bend. Awesome. All right, this has been a really incredible conversation. I feel so lucky to be able to facilitate these kinds of thoughts with people from really around the world. Actually, where are you guys located? You’re [Valerie] on The East Coast and [where are] you, Justin?

JO:

I’m on the West Coast. I’m in Utah.

LS:

Lovely and I am in Israel. It’s wonderful. Thank God for the wonders of the Internet and Zoom. What should I say? We can have deep meaningful interactions that also then spread and have more impact, I hope through the listeners of the show, is really I think also part of the change. 

JO:

So please, if I may, I just want to say on behalf of the Deaf and HoH, thank you. Both of you Dr. Lilach and all you’re doing. All the breakthrough technology that you guys are providing for us so that we can have a better quality of life. You are literally the bridge builders so that we can walk across, Bridget and I. So we can literally I mean, hear with conviction, be able to speak with passion, all these things would not be happening today if it weren’t for you guys. And this wonderful podcast and helping make that happen. So I just wanted to quickly just mention that. Thank you for believing in us, helping us, and supporting us. You guys are our hope. And hope is a big word. And I remember back when I was younger, you know, we had the feedback issue. We had so many issues, but today that’s no longer the case. I’m a power junkie. I love power. But anyway, thank you from the bottom of my heart.

LS:

I guess I have a lot of audio engineers, researchers, and all sorts of educational giants to thank for that. I’m just sitting over here having a podcast, but you’ve got it. All right. Let me hear where people can find you and learn more about you or connect with you. So we’ll start with you Valerie.

VA:

People can find me personally at  valeriejamesabbott.com. 

LS:

And the new Padapillo. Yes, and that is on Barnes and Noble, Books A Million, Amazon.

LS:

And how about you Justin?

JO:

I represent the Olive Osmond Hearing Fund You can find that at hearingfund.org. Hopefully we can find those people, identify those people, discover those people that may need some help. We can’t do much alone, but together all of it together we can do so much more to help. So thank you.

LS:

Amazing. Thank you both so much for coming on the all about audiology podcast. I am so so grateful to have you as a listener. And as a reminder, there’s also a Patreon for the podcast for anyone who is interested in supporting this work. It’s at patreon.com/allaboutaudiology. Thank you both. Bye. 

VA:

Thank you.

JO:
Bye

The post All About Late-Onset/Late-Identified Hearing Loss — Episode 80 with Valerie James Abbott and Justin Osmond appeared first on All About Audiology.