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

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Today on the All About Audiology Podcast, Dr. Saperstein spoke with Michelle Wagner, author of Mickey on the Move, the true story of a day in the life of Michelle’s son, Mickey. Mickey was born deaf and at the age of three, he was given an opportunity to get bilateral cochlear implants. Now, he is 13 and he is thriving! Michelle’s goal was just to make a simple children’s book and have pictures in it so it’s easy for anyone, including adults, to understand exactly what cochlear implant devices are. Michelle has already received four awards for the book.

5:25 – Michelle connected with a hospital that had a great audiology department with the hope of giving Mickey every opportunity possible for him to use language and communicate verbally.

8:45 – When COVID hit, Michelle was working from home and decided to write a book so that Mickey can use such literature to explain about his cochlear implants to others and also to bring a general awareness of cochlear implants to the public.

13:00 – Mickey, Michelle, and Michelle’s mother spent a month at the John Tracy Clinic in Los Angeles. While there, Michelle and her mother learned how to support Mickey to the best possible extent.

14:30 – She is also thankful for all the people that were able to talk to her about their own experiences using implants so that she could better understand the process.

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

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Connect with Michelle on Instagram, Facebook, Twitter, and LinkedIn. Find her book, Mickey on the Move, on Amazon.

Mentioned in this episode:

Dr. Lindsay Cockburn from @listenwithlindsey who has an incredible, comprehensive list of books on hearing loss that keeps on getting updated

Related Episodes:

Children’s Books, Literature and Representation – Episode 69 with Katie Petruzziello

All About Supporting Your Child Unconditionally – Episode 66 – with Takniyan Debbie Dachi

All About The Parent Journey – Episode 62 – with Liba Lurie

All About Creating A Vision For Your Child’s Life -Episode 43 with Genia Stephen

Listen Next:

All About 2021 Reflections and Awaiting 2022 – Episode 79

Transcript:

Dr. Lilach Saperstein:

Welcome back to the All About Audiology Podcast. I’m your host, Dr. Lilach Saperstein. I’m an audiologist and a parent coach, really passionate about exploring the topics that surround audiology and how it actually matters to your life and the lives of the people you love. We really focus here on connection, on communication and on what this journey really means to you. What are the challenges that you’re facing, and in what ways can you learn to advocate and really focus on the most important elements of your relationships and how that intersects with yes, the latest in hearing aid and cochlear implant technology, but we really focus on this show on your experiences with interviews, with professionals, with family all around these topics. So one of the things that has really been exciting about the show and about the All About Audiology platform on Instagram, on Facebook and now on TikTok, is that I get to connect with so many of you and I love talking to so many of you and learning about your stories, and once in a while, I would love to invite you to also share your story with everyone else.

So thank you to those of you who have been guests in the show. If you are interested in being a guest on the show, feel free to send me a DM and we’ll set something up. If you’d like to talk about an interesting element of your story or advice that you would like to share with our audience, whether that comes from your personal experiences or if you are a related professional. Absolutely send me a DM on Instagram or through Facebook, or a regular old email–those still work. Email address is in the website at allaboutaudiology.com, and you’ll find all the links along with a full transcript of every episode at allaboutaudiology.com. So thank you so much for reaching out and sharing your story.

Recently we’ve had some talks about books that are written and there’s so many fabulous, wonderful, wonderful books on the topic of preparing children for an audiology appointment, how to talk about the technology or the equipment and help children learn to advocate for themselves. I have to give kudos to Dr. Lindsay Cockburn from @listenwithlindsey who has an incredible, comprehensive list–well, she’s constantly updating it, I’m sure. It has a beautiful Amazon list, separated into category of lots and lots of books related to audiology technology stories representing deaf children, which is not only about their hearing loss and only making the story focused and centered on their devices, right? But about much bigger stories and just representation overall of deaf and hard of hearing people. So definitely check out her book list there. And I would love to invite you to listen to an interview with an author who’s writing about her personal story with her son, Michelle Wagner. I’m so excited to play this episode for you.

We recorded several months but just catching up on some amazing episodes. I cannot wait to get them live for you, and I want to just thank you so much for being a listener of the show, being part of the All About Audiology Podcast and thank you to the patrons of the show.

You can check out more about becoming a patron at allaboutaudiology.com, and stay tuned always before the upcoming retreats for parents of deaf and hard of hearing children that are all about learning to advocate and connect with your child. So you’ll see more about that on my social media and email list.

Thank you so much for listening. Without further ado, I’d love for you to hear my conversation with Michelle.

Michelle Wagner:

I am here today to talk about my book, Mickey on the Move, which is a true story and a day in the life of my son, Mickey, who was born deaf and at the age of three, he was given [an] opportunity to get bilateral cochlear implants, and that means he was able to get cochlear implants in both ears and hope that he would be a hearing and speaking child. And now, he is 13 and he is in school. Eighth grade, and he’s thriving. The beginning was a little rocky after he was first implanted and after they activated his cochlear implants, it was a whirlwind [for] all of us, but given all of the tools as far as a special school for hearing and speaking and signing children, and constant till this day, private speech lessons, he is able to have a normal life, be enrolled in school with other typical children. He plays all kinds of sports. Cochlear has now come out with about three or four years ago, a Aqua Cochlear, so he’s able to do one of his most favorite things, which is swimming and he can do that with his cochlears on because they have developed kind of the shower cap is what I like to call it for his cochlear implants so that he can actively swim and still hear what’s going on around.

LS:

So, so wonderful to meet you and have you on the show and learn about your story and your son’s story. I’m wondering what comes to mind for me, because we talked so much about early childhood. What happens when there’s a diagnosis or an identification? So, can you talk a little bit about those first years, the first month when you first understood that this is what you guys were going to be handling? What were some of the feelings you had? What information did you have or did you feel you didn’t have at that time?

MW:

I really did not have any information in the beginning. We adopted him from Russia and he was in an orphanage, and when we adopted him at 18 months, they just told us he had [an} ear infection, and then we brought him home to California. And after about two months, we realized there was not a language barrier, so to speak, which is what we thought in the beginning.

What we did was we just started banging pots and pans together and realized he wasn’t turning around. So the first thing I did was look up a Ear, Nose and Throat doctor in the area, because it was suggested to us, and they put hearing aids on him and we realized there was no change at all, so then we had a connection with a special hospital that had a great audiology department.

They said, well, do you want a hearing child and speaking child, or do you want a signing child? Because as you probably know, the deaf community is very strong, and the deaf community helped us tremendously in the beginning, but they also believe that you could get through life, which many people do just by signing and in the area where we live, there’s not a lot of people signing. Although now at the high school here, they do offer sign language as a second language, which is unbelievably great. But we decided to have a speaking child and decided to give him every opportunity possible for him to help a typical life, and so we went forward with the operation, hoping it would work and it did. And through the audiology department at the hospital, they gave us basically everything we needed as far as schooling and other help, as far as private speech and things like that, that we could reach out and access. They made it very easy in order to get Mickey, and us as the parents, tools to help him grow and develop.

And through the years I drove very far distances for school. His first school was an hour and a half away, and I was doing that drive until I finally was able to get an apartment closer to the school. And me and his dad, who then got divorced while we were going through everything, were able to take him too, and he went there for about three years and then we found a school 45 minutes from our house where he could attend a special day class for the deaf and hard of hearing. And there were kids also with cochlear implants and he loved that, and they did intensive signing and speaking in the class. So, he was able to still use signs that we’ve learned, plus be able to get his speaking skills, and then after school, I would take him three days a week to the private speech lesson and that teacher, she still is his teacher today at 13 years old. So, she is definitely part of the family, very much so. But when he was finally mainstream in fifth grade, I noticed that one of the biggest challenges for him every day was explaining his cochlears and explaining he couldn’t hear at all without them. And his language was not fully developed yet. It is still not fully developed, but he is able to have a conversation and go through that, and when I saw how difficult it was for him to try and explain to people, even when we went to events, or met new friends and family that didn’t know him that well, it was always a challenge.

And when COVID happened, I was like, “You know, I’m going to take this time where I’m working from home and try and write a book so that Mickey can use it.” Kind of like, he introduces himself to new people and also to bring awareness for cochlear implants because so many people don’t know what they are. I never knew what they were until my son came along. I had grandparents and other friends who had hearing aids and things like that, and I grew up with a great grandfather who never really used his hearing aid so we were screaming all the time. And with Mickey’s cochlear implants, he can hear a whisper, and the technology is just so far advanced, and with his every six months getting mapped, his processors, which are like the little computers and the magnet connects to his head, he’s able to access all sorts of sounds.

So I just took a shot at that. It was suggested by a friend who put me in touch with her publisher. And I said, I just want to make a simple children’s book and have pictures in it so it’s easy for anyone to understand exactly what these devices are and how certain situations can make it really difficult and challenging for someone with cochlear implants to hear, for instance, loud noises.

And, you know, I like to go to restaurants a lot, but for my son, It’s definitely not a good environment because there’s too much outside noise, and with the cochlears, a quiet environment where he can hear everybody directly without any access noise, traveling in a lot–

LS:

That’s so important that even though he can’t, let’s say you know, hear a whisper or hear all these different sounds, that doesn’t mean that it’s going to be the same kind of hearing that someone else might experience in all these different challenging situations. Like you mentioned, the pool and indoor pools have huge echo and reverberation and all the splashing and all the yelling, such a difficult acoustic environment.

I love talking to people who are writing books about this topic and the more that you can educate the people around you, that’s bringing so much help and awareness to everybody. What are some of your goals with the book? Who would you like to see reading it, and what is your dream for what happens with it?

MW:

Well, I found that it helps adults just as much as it helps children right now, and throughout the United States, the book has really taken off and I already received four awards for it. And the publisher said, “You know, not everyone gets awards and not everyone gets awards within the first year it’s released,” and I just think there was a need for it. And it’s so easy–the pictures and it’s straightforward, and it explains how in his daily life at school, even lunchtime was difficult for Mickey. With too much noise going on around him, he was not able to even have a conversation. You know, a big loud room with high ceilings is like the worst environment, especially when people are having all sorts of conversations going around, and if pots and pans [are] clinking, or even silverware, it really distracts him.

You know, I had to adapt my life in the beginning. It was just him and I living together at home. It was very quiet. It was the perfect thing. And I look back and I think I’m very grateful for the time that he and I spent together one-on-one, and also to be able to just focus on his speech and just focus on his learning and developing and make the at-home environment as comfortable. And all the words and pronunciations as easily accessible to him as they could. One thing I loved is that the community for cochlear implants and going to those special schools, they introduce you to so many people, and there are so many parent groups and children groups and things like that. And being emerged in a classroom with children who also have cochlear implants and maybe had them from birth, their parents were always like a world of knowledge. And we found this place called the John Tracy Clinic in Los Angeles, and Mickey and I went down there for a month. My mom came for some of it just to support us and to learn herself how we’re going to live with this child in a quiet environment and support him to the best possible knowledge. And so for a month, Mickey and I lived in a college dorm with really nothing there, with all parents and from around the world, and we still keep in contact with the families from France, from Israel, from Australia who came from all over. I mean, for us, it was only six hours away or a short plane ride, and these people came from all over the world to go to this John Tracy Clinic, which showed us how to live as a parent and child.

LS:

That’s so wonderful. You know, at first, in the beginning you mentioned that there is this either-or. You either do this and this and get a signing child, or you go and do that and that and that, and get a speaking child. I want to dive into that a little bit more because that’s one of those topics that comes up a lot on the show and in our community, All About Audiology, trying to move away from a real binary like there’s either this choice or there’s this choice and two different camps or things like that.

I’m wondering what your experience has been with that you touched on it a little, and also if that has changed at all over the years for you.

MW:

I don’t regret at all getting him implanted, and I definitely am thankful for all the people that we were able to talk to about it and their own experiences and talk to even children at that age who were implanted before he was implanted so that we could understand. And we live in a very small agriculture farming community and in this community, there’s a girl who’s now 25 years old, graduated from college and her mom lived two blocks away from us here, and through an aunt’s cousin’s friend, whatever–as soon as they found out that we were going through this and Mickey was having to cope with hearing and all that, she came and knocked on my door one day with her daughter, and she’s like, “I want you to meet Tara. She has cochlear implants,” and I spoke to Tara and I was just like, “Wow,” and I asked her, I said, “Do you think that you would have been happier if your parents didn’t get you cochlear implants and that you were signing all this time?” and she said, “I am so happy I have cochlear implants. I can hear,” and she said, “If I feel much safer with them, and if I don’t want to hear, I just take them off.” Just to see her and hear her and listen to her, and then throughout the years, meet more people who just reached out, that knew us or heard about us and came to our home and played with Mickey and we tested other things, and how helpful the audiologist is. He does still have the same audiologists 10 years later that we go to.

So everybody–they were extremely reliable and just full of all kinds of information. I have books. I have binders, but really the in-person experiences and being able to attend the schools with him.

I went to school for teaching, and then I was working in restaurants, while I was to pay my college tuition and once I graduated, I did teaching for a little while, and then I said, “I really need something more fast paced,” but it just goes to show that you really do use everything you’ve learned throughout life to get further where you are today, and to allow me to keep my eyes wide open and really ask Mickey how he feels about things.

And at the beginning, when they first did the Aqua Cochlears, it was horrible for him, but he was like, “It’s fuzzy,” and then they developed. They were more advanced and now, it’s a lot better, and sometimes he only swims with one on, because it’s just easier when he’s jumping in the water and things like that but with sports and everything, they make special helmets. When he was playing baseball, with an extra space for the cochlear implant.

You know, you just have to kind of exhaust every resource, and I was always positive as a parent, and everything was like looked at as a positive and good. And for that reason, Mickey is a very positive kid and he is not shy. He is not embarrassed about his cochlear implants. He’s always ready to just go and tell people, and he has a lot of little cousins his age that will tell other kids about him, but since I have the courage to actually take a stab at writing a book–I’m definitely not an author. I mean, I am now because of this book–I was like a deer in headlights going into it, and now when I see how much it’s helped people and schools–it’s in the school libraries. And in the Bay Area, there’s a huge, huge deaf community. It’s in all the bookstores in Berkeley, San Francisco, all kinds of areas and all the way to New York and up to Washington. Teachers have it now in their classrooms. High school. Yeah. I hear even college students have bought it just to help them and to share with people. Audiologists–I’ve done a lot of podcasts with audiologists who have purchased the book and are like, “This helps so much,” and so many children like the book, because they could show people. This is like how I am, this is what I’m about.

That’s the most rewarding and joyous part of it all.

LS:

Well, if you have other parents listening and other professionals and students, what would you say to them?

MW:

Wherever you are in the process right now, keep going and use those resources. We can all Google anything, and there are so many communities for children, for adults, for parents, with implants or family members with implants that really make it easier.

You just have to take a deep breath, have a ton of patience because it does take time. You know, I think back to those early stages in those early years and him essentially going in and getting his skull opened up and things like that, and I don’t know how I did it then, but we did it together. And having hope and a positive attitude really made things a lot easier.

LS:

That is so wonderful, such good advice that we can all take to have patients and keep going. Be persistent. Thank you so much for sharing your story with us, and if people want to contact you or reach out to you, where can they find you?

MW:

Well, Mickey on the Move, you could buy it online through Amazon. I know a lot of people are doing that right now. I have a website, michellewagnerauthor.com. You can see all the reviews. You can see stories about Mickey, how Mickey’s growing–there’s a Mickey on the Move, Instagram, Facebook, Twitter. You could find me on LinkedIn. I post a lot of articles as well, and another piece of education for everyone.

LS:

Amazing. And thank you so much for sharing it with us. We’ll have all of that linked in the show notes, a full transcript of our conversation today, over at allaboutaudiology.com. Thank you for listening.

MW:

Thank you, Dr. Saperstein.