If adversity is a test of character, Michelle Wagner has passed with flying colors. Deciding to adopt a child, a process that took a year, it was later discovered this beautiful baby had a profound hearing loss.

The doctors recommended bilateral cochlear implant surgery. This required a staggering amount of research and support, all of which Michelle handled with aplomb while dealing with an impending divorce.

Faced with the choice of whether her son should go the route of sign language or mainstream with hearing, she decided on cochlear implants.
The road was not easy. Her son had no language skill and he was three when he received his surgery. Her story is a true testament to perseverance and love. Today Mickey is a thriving thirteen-year-old.

Parents and professionals who are facing this scenario will gain insight from Michelle’s story.

Transcript

Voiceover:
Cochlear Implant Basics is a site for candidates and their families and friends. If you have been told you qualify for cochlear implant, these podcast interviews tell how receiving a cochlear implant can be a life-changing experience. You will meet recipients who face a hearing loss, and then hearing aids could no longer provide comprehension of speech or music. They face growing isolation, inability to socialize or compete in the world of business. The joy of music disappeared. They explain how receiving a cochlear implant changed their lives. Welcome to Cochlear Implant Basics. A reminder, Cochlear Implant Basics is not sponsored by anyone, nor is it offering medical advice. Please consult your own healthcare provider.

Richard:
We’re talking today with Michelle Wagner, who has a son with cochlear implants, and I’m going to let her have the floor. First thing I need is your name, today’s date is the 20th, and where you are, what state you’re in.

Michelle M. Wagner:
Hi, I’m Michelle Wagner, and I’m in Washington right now, and it’s June 20th, 2021.

Richard:
Thank you for joining me. I’d like to know a little bit more about your son, how you discovered he had a hearing problem, and I’m going to let you have the floor and tell me some background to it.

Michelle M. Wagner:
Thank you, Richard. So, my ex-husband and I always wanted to be parents and we decided to adopt. And I have cousins in Ohio that had just adopted from Russia, so we decided to take that route. We adopted a beautiful little boy from Russia and we brought him home. And two months after we were home, we realized… He was about 18 months, and we thought at first it was a language barrier, but it turned out that it didn’t seem like he was hearing us. And we were banging pots and pans and he was just not turning around, and so we went to a local ENT. They put hearing aids on him. There didn’t seem to be much of a change, and then we went straight to a larger hospital, a bigger audiology team and so forth, and they suggested bilateral cochlear implants. And so, it had to go through the FDA approval and all these other hoops to jump through. And Mickey was implanted at age three.

Richard:
That and he had both done at the same time?

Michelle M. Wagner:
Yes. We were fortunate enough for him to do bilateral cochlear implants in both ears at the same time.

Richard:
Now three years old is considered a little bit older than most pediatrics, but how was his language development?

Michelle M. Wagner:
At the time he had no language. He was just making sounds. And then after he was implanted, and of course, after the recovery period, it was still quite a challenge because it was his first time hearing anything. So we had started some sign language, and then after he was implanted, we had specialists talk to us and they said, “Do you want a speaking child? Or a signing child?” And we said, “Well, we have the cochlear implants. We want a speaking child.” And there was a lot of different opinions, but the best thing that I did, or we did, for my son was, there was a special program in Southern California called the John Tracy Clinic, and it emerges you for about a month, the parents and the children. So my son and I did this program.

Michelle M. Wagner:
We lived in the dorm rooms there that they gave us, and it really showed us how to live with somebody with hearing impairments, with those challenges, and to be able to give him all the tools he needs. And to this day, we still, he needs to ask for something, he repeats it until he says it correctly. We got divorced during the time of his waiting for the operation, operation, et cetera, being implanted, and he had to go to special schooling, and the two of us just lived together. And that was probably the best thing to happen, and I had to change my life. I’m kind of a foodie with a restaurant background and there was no more going to restaurants.

Michelle M. Wagner:
He needed the quiet environment of being at home, just the two of us, to not have the background noise, especially in the beginning. Special school, private speech aside from the special school. And then I wanted him to not feel any different and I wanted him to have confidence and he played sports. Other than the first two schools he was at, so up until about fourth grade, he did everything with other typical children. And until this day, he is 13 now-

Richard:
Wow.

Michelle M. Wagner:
… and he finally went mainstream to a regular public school where we live, and now he’s in a farm school. And until this day, he is confident. He is athletic. We are still going to speech three times a week, and it’s always going to be a challenge. We’re very positive. He has a great attitude. I couldn’t ask for any better situation than, he hears and he’s grateful.

Richard:
Attitude plays so much a part in this because some parents absolute were in a panic, and after they gave the cochlear implants, they still haven’t calmed down. So you’ve given a message that’s very important for parents to know how important positive thinking is to get the best results.

Michelle M. Wagner:
Absolutely.

Richard:
Now, tell me a little bit about the auditory training he gets. He still goes for training three times a week?

Michelle M. Wagner:
Yes. He still goes to a private speech therapist just to work on sounds and expressive. He also has some other delays cognitively with learning, but he is a brilliant boy, very brilliant. He’s a builder. He’s very hands-on. He loves animals. He’s an animal whisper. We have chickens at home and he has… there at school, there’s goats, and there’s chickens and bunnies. He loves all that. And the one thing, always in any school, or anyone that meets him, or is in school with him, Mickey is very empathetic.

Richard:
I have to take you back a few steps because parents who find out their child has severe hearing loss, they’re in a panic. Could you talk a little bit about when you met the surgeon, how you were feeling. What was going on in your head at that time when you met with the surgeon and you knew your son had a problem?

Michelle M. Wagner:
Yes. I was scared, yet I was willing to do whatever it took to give this boy every opportunity within my reach. And we had friends in the medical industry, we asked for opinions, did research, read everything. There’s parent groups both online that you could find that really put me at ease. It took a whole year to do the adoption, and that was a roller coaster.

Richard:
Okay.

Michelle M. Wagner:
And so then we finally get this beautiful boy, and then find out he cannot hear and speak. And it was devastating, but we were like, “Okay, what do we do?” And we find the best possible solution for this. And yes, at that same time, my then husband decided he didn’t want to be married anymore, and there was a bunch of challenges. But now I look back and I don’t know how we got through it, but-

Richard:
You should be proud of what you got through. You should be very, very proud, because a lot of parents just don’t know what to do. They collapse. And you didn’t collapse for one second.

Michelle M. Wagner:
No. We just wanted to do everything. And still until this day, I have his dad’s support, and support in the community, and from everyone, just embracing this.

Richard:
How did you find the support? That’s an important question. How did you find the people that would help support you?

Michelle M. Wagner:
Well, support, I think emotionally supportive is what I’m… and family and friends. I’m fortunate enough to always have family and friends. And I was always the helper and I was the oldest child. I thought I had everything together, and for the first time in life, multiple things were… it was a domino effect of me needing to ask for help. And that’s the thing that every parent, or a person that’s going to be a cochlear recipient needs to know. Ask for help because the help is out there. Emotional help is out there. There’s financial help out there.

Michelle M. Wagner:
And if you just go into a shell… And the last thing for small children that I knew I didn’t want to do is act like it was an issue, make it a problem. I wanted my son to know and to feel that he is 100% loved. He is 100% a normal child. He can do anything he wants, and mom and dad are strong and supportive. And because he has felt safe from day one, he’s taken it all in stride. And most recently, I released a book about him as an elementary student trying to tell others about his cochlear implants, because a lot of people don’t know what they are. And it’s been a huge success. And the whole point of it is awareness and education. Education is what everything comes down to.

Richard:
I had that discussion almost every single day, that education is the biggest problem of all. And so many doctors don’t even know what a cochlear implant is. The public has no idea. So it’s a constant struggle for the education, and what I hear from you is you are paying it forward by educating other people. Even by doing this video, you’ll probably reach five or 600 people next week, and somebody’s going to click and say, “Thank you for making the video. Thank you for explaining what’s going on.” Let me ask you another question. Since he was so young, do you remember what activation day was like when they turned him on? Can you tell me about that?

Michelle M. Wagner:
They told us it might be very scary or traumatic, and they activated him and he just seemed happier. And it was actually a good experience. I know for a lot of adults, it’s more emotional, and for people that have heard before, I think that it’s different, and maybe some them do not like how it sounds. But for my son, it was the first time ever he was hearing. And just like you have the Nucleus 7 now, that’s what he has as well. And he started out with the Nucleus 5 and then 6. And he hears whispers. He lets us know if something’s too loud or not loud enough. And we meet with his audiologist now only once a year for mapping and things like that. Medicine is so amazing, and the doctors, and the technology that’s out there is incredible. And they came up with, not too many years ago, Aqua Cochlear’s. And at first, we had lost Cochlears because the slip cover for it was not the best and things like that. But now, he is able to swim with his friends. Being 13, it’s important, and that’s pretty amazing.

Richard:
May I ask you a question? Parents that I’ve spoken to are sometimes torn about getting a cochlear implant because they’re afraid their child’s speech will never sound normal. Can you tell me a little bit about Mickey’s speech? I know he’s still going to training, but tell me objectively, what do you think his speech sounds like?

Michelle M. Wagner:
Those of us that are around him all the time, he’s easy to understand. I do want you and everyone who’s listening to keep in mind that Mickey does have some other cognitive delays, so that the comprehension of the speech… But receptively, it’s amazing. And his speech, he doesn’t sound like you would expect. He does not sound like he is deaf. He sounds-

Richard:
Like the deaf speech, that accent.

Michelle M. Wagner:
Right. And he sounds like he has cochlear implants and perhaps some vocabulary issues. But overall, it’s also a work in progress.

Richard:
We like to say that progress never stops. There’s constant rehabilitation your whole life, no matter how long you’ve had the cochlear implant, so that’s understandable. Let me ask you about music. Does he enjoy music?

Michelle M. Wagner:
He loves music. In fifth grade, he played the bongos for a school show. He likes happy music. He loves listening to The Chipmunks and has been to concerts with me. I don’t know if you know who Michael Franti is, but he’s very happy, upbeat music, and Mickey was right there in front of the stage. And the famous singer even gave my son his drunk stick, and he loves music, loves.

Richard:
That’s fantastic. I love that. That’s great. I just have to ask you one more question. As a parent, I want you to speak out to other parents who found out their children has a severe hearing loss. What advice would you give them? And I’m going to give you the floor to say anything you want.

Michelle M. Wagner:
Embrace it, take every step in stride, and if you are secure in handling it and open to new ideas and willing to use every resource and do the work yourself, your child will be very successful, but the child has to feel safe. And there are resources for parents. There are parent groups where you can talk to, and that’s the right place to let out your frustrations, and intimidation, or sadness, and utilize them. And talk openly with your family and friends. It’s not something to hide for sure. It’s an opportunity to educate. And every task is different. Every road is different. And I know because of certain challenges we overcame together, that he’s happy and he’s where he is today because-

Richard:
That’s fantastic. I appreciate your time. Your message will get out there. You’ve payed it forward for hundreds. You have no clue who you’re going to reach, so I really do appreciate your telling me the story.

Michelle M. Wagner:
Thank you, Richard.

Richard:
All right. You be well.

Michelle M. Wagner:
You too. Thank you.