Challenges and Blessings of Navigating Hearing Loss in Children: Interview with Heather Thomson

Shari Eberts 0:09
All right, well, welcome to this Week in Hearing. I’m Shari Eberts. Author along with Gael Hannan of ‘Hear & Beyond, Live Skillfully with Hearing Loss’, and I will be your host for this episode. Today we have a terrific guest and when I’m very excited to meet Heather Thomson, I’m a big fan from her days on The Real Housewives of New York City. Heather Thomson wears many hats. She’s a mother of two a wife and inventor, designer, entrepreneur, podcaster, philanthropist, performer, Speaker athlete, licensed health and wellness coach, TV personality and avid adventurer. She has garnered 25 years of fashion experience, including in 2008, founding her innovative and fashion forward collection, which changes the shapewear industry and empowered women to look and feel their best. Currently Heather spending time on her passions, her podcast In My Heart, and Beyond Fresh, which is her organic superfood brand. But to many she’s an adored reality star from her years on the hit series, The Real Housewives of New York City. Now what most people don’t know from her bio is that Heather also has a personal relationship with hearing loss via her son Jax. And that’s what we’re going to talk and focus on today. So thank you, Heather, for being here to talk about your experiences, and to share what you’ve learned with other parents of children with hearing loss.

Heather Thomson 1:36
Thank you so much for having me, it’s important to share our stories. That’s how we get the message out there. And we make people realize that there is a community for them in every little pocket of this beautiful earth and crazy world we’re living in. So I really appreciate you having me and I’m looking forward to this chat.

Shari Eberts 1:54
Absolutely. So maybe start off us and just tell us a little bit about Jax’s diagnosis when you discovered that hearing loss and what treatment was recommended.

Heather Thomson 2:03
Yeah, so Jax’s story was certainly not cut and dry. There was a lot of kind of stop-starts with his hearing issues. Because Jax had a liver transplant at six months old, he was dealing with a lot of health issues as an infant early on. And the hearing was something that we were just not focused on at the time. He has a chronic lung disease called bronchiectasis that he has to, you know, look after for the rest of his life and his liver transplant. Of course, now he’s got a healthy functioning liver, but there was a lot of medications that went along with that etcetera, etcetera. So, once we got Jack stabilized, and he was actually a baby sitting in his highchair, you know, like experiencing with food and trying new things. We literally went to just get a lot of his normal baby stuff done that a lot of infants have that Jack’s missed out on because we were dealing with other things. And we had a hearing test and the hearing test came back, you know, not great. And our pediatrician was like, have you noticed, you know, have you noticed anything with Jax? Because he hadn’t even noticed anything with Jax, you know, because we were so focused on other things. So we missed it. We literally missed it. And so it started where his hearing wasn’t horrible. It just wasn’t great. It was like we should have a hearing test we should probably see an audiologist, which is a hearing doctor for those people who don’t know, and someone who helps understand an audiologist is really a, I guess are they doctors, audiologists?

Shari Eberts 3:33
They have doctorates, they’re not medical doctors

Heather Thomson 3:34
that’s what I thought because they are doctors, but they don’t they test your hearing, you know, they really do do all these testing, we have this incredible audiologist who happened to be pediatric kind of really driven and she was so incredible with Jax because for people who’ve never had a hearing test before, if you’re a child or a baby, it’s hard for them to keep the headphones on and kind of understand what’s happening. Um, but they’re actually super fun and audiologists make it a lot of fun for kids. And so it was something Jax actually would look forward to with Michelle. So – that was our audiologist’s name. So to make a long story short, first, we were diagnosed with just some hearing tubes, we needed some ear tubes, there was some drainage issues in the ear and there was fluid building up and that’s why the hearing loss was happening. Well, six, six hearing tubes later. My doctor who I really appreciate so much for this said to me, I am not diagnosing this properly. I don’t know what’s wrong with Jax but I’m not diagnosing it properly. And I keep trying to make these fixes that are not fixing. And I’m going to refer you to a colleague of mine because this is beyond me. I don’t know what’s going on. So I think that doctor so much and he’s an incredible doctor, it just this one he couldn’t figure out so he gave us to a specialist and we actually covered on the housewives that was you know, one of the you know, check the positive boxes of being on the show I was sharing our story, which is one of the reasons why I wanted to be on the show to share my life and my story and my reality. And Jax obviously was a big part of that. So we show this whole thing on the housewives but for those people who never saw it, what Jax was diagnosed with was a rare disorder where his hear his eardrums were actually receding back into the ear canal. So they weren’t they were sucking back in. Just by nature of the development of his ear canal. He has a small ear canal. And it’s an it’s an air issue. Think about when you open the car window and you only open one and that weird noise happens at suction. What makes you uncomfortable, that was kind of that that was happening in Jax is inside his ear canal and it was pulling back the eardrum. And what what it was risking was we have three times the tiniest bones in our body, for people who don’t know are called the three bones of hearing. And when you having issues with your eardrums, if those bones break, especially think about the suction, that pressure snaps those bones any type of reconstruction is a lot it changes the game when it comes to reconstruction. If those three bones in hearing are intact, surgeons believe that they can potentially reconstruct the eardrum to correct the hearing issues. And so that’s what we did with Jax. We had two surgeries on each ear

that your surgery is tough, because obviously you get kind of disoriented and you know your balance and things like that can get off. Vertigo, things like that can happen Jax thank God had our doctor Dr. Alexiades in New York City is I have to say one of the best doctors I’ve ever had. And I’ve met a lot of doctors, but Jax, you know, bedside manner like Shaq, but he’s just such a incredible doctor, he just, he tells you the truth. He lets you know what he can fix. And he let you know what we have to look for in the future. So he corrected Jackson’s issue for a temporary, it’s a temporary fix, potentially, he said it could start to happen again, we could in fact need to do the surgery again on each ear, we might be able to fix this hearing and reduce the some of the hearing loss that he’s having. Or we may be able to just plateau it so it doesn’t get any worse. So that’s really what happened with Jackson’s hearing, his hearing didn’t improve. And over time, what was initially as a not so great hearing test as a baby turned into without hearing aids, Jax has, you know, disabling hearing loss, he can’t hear you. So with hearing aids, it changed our lives. And then understanding hearing aids and the technology behind hearing aids not all are created equal. And sometimes there’s a lot of propaganda out there and you’re sold an amplifier, which is not a hearing aid. And so some people get the wrong hearing aids and then they’re like, ooh, this will never work for me. So Jaxand I, now he’s 17. And I want to talk about the stigmas and and things like that that have gone along with his hearing loss. But Jax is 17 now and he started with his hearing loss journey at you know, eight years old. So it’s been a real journey. And now the difference between having a baby who I had to try to figure out things for and a teenager who can advocate for himself has been a huge eye opening change for not only myself but for Jax and his journey. So that’s Jax’ story. That’s what happened with his ears. It’s an ongoing battle. I won’t even tell you what the name of the diagnosis is, because I can’t even pronounce it. You know, it’s like disinter…ta da baba da baba, you know, um, but that’s his, that’s his hearing loss story.

Shari Eberts 8:32
Well, it’s great that you’ve discovered it, and that you had such a great team on your side that was able to work through all these issues with you.

Heather Thomson 8:39
Isn’t that everything, it takes a village, you know what I mean? You have to and I will just implore people who are going through any struggle or any medical issues like you can get second opinions, you can go seek other opinions. You know, doctors are human beings. And just like in a social situation, you might be really drawn and attracted to someone, the same thing can happen in the medical community with your caregiver. So you can check a lot of boxes with a doctor. And if you don’t feel like those boxes are being checked, you can 100% seek other opinions.

Shari Eberts 9:12
Absolutely.

So talk a little bit about how Jackson’s diagnosis impacted the family overall.

Heather Thomson 9:19
Well, at the beginning, you know, we kind of were like, Oh my God, how much has he missed out? Like we felt we had the guilt, you know what I mean? The bad parent guilt, you know, what I mean? Like, what how did we miss this? But we quickly understood that we you know, beating ourselves up wasn’t going to do anything. And so we had to look and say, Where is he in terms of learning scale, you know, learning like what is his disability, quote, unquote, what is his challenge? What do we have to work toward with him? And really quickly, what we found out was it was the things that you might guess I’m moving to the front of the classroom, you know, letting the teacher know that if Jax’s got a confused look on his face, that there’s a big potential, he didn’t hear what she had to say. And maybe if she would repeat it. So we were very open with our teachers early on that he was a baby, he was just a kid, he was just a child, a toddler, and we needed to be his advocates. And so we had a community of teachers and doctors that leaned in to make Jax feel a part of, versus outcasted, which is, you know, a problem for so many people with disabilities and you know, hearing loss, namely, and I will just fast forward to the heartbreaking reality. During COVID, for me and my family, was that we just passed the Americans with Disabilities Act in my lifetime, right? You know, it wasn’t so long ago. And here we were, during COVID, leaving the Deaf community out, again, completely out of the conversate. Completely out of the conversation. I mean, we’re on a zoom call right now, I use the free zoom app, you know what I mean? Sometimes I have the business app when I need it for all like longer calls in an hour. But closed caption isn’t an option on Zoom. And a lot of the schools were using Zoom. And I realized soon, very quickly how isolated my teenager was becoming through lack of social interaction, literally like looking at a screen and not being able to hear anything that was happening, and not wanting to say anything about it. I mean, I called Zoom, I tried to, I tried to make a change.

Shari Eberts 11:31
Well, I actually started a petition during the pandemic, we got 80,000 signatures about putting those captions on to the Zoom free platform. And they finally did it this fall. But it took them so long. And it was such, I mean, an impact for anyone with hearing loss. Anyone with auditory processing disorder, it’s an outrage. Really,

Heather Thomson 11:55
it was an outrage. And I’m mad that it took that long. And I would implore, I would, you know, implore people to use other platforms like Microsoft that had the closed caption as part of the free app. But you know, everything happened with a pandemic so fast for America and the global world, that it was like one of those things that happen is people just get left out when there’s an issue. And now that now we’re back in school, right? But people are wearing masks. So now again, my kid doesn’t know how to sign and he doesn’t read lips, per se. I think he reads him more than he believes that he does. But you know, friends of mine, like Mandy Harvey, who was on America’s Got Talent is completely Deaf. You take away a mouth for her, and you’ve taken away her hearing completely. So and then with no closed captions, so it was an outrage. And I’m glad that they’ve added it. And we learned a lesson. It’s just another lesson to learn that in the future, God forbid, we can’t let history repeat itself, we can only learn by the mistakes that we’ve made to correct ourselves in the future.

Shari Eberts 13:01
Absolutely. And so now he’s 17. So how do you make that transition for him to start thinking about, you know, maybe going away to college and advocating for himself?

Heather Thomson 13:13
Yeah. So it started early on. So when we were in, like, like grade school, we switched schools, Jax went from one school in New York City to a new school, and he was going into the eighth grade. And or was it seven, sorry, I think he was going into the seventh grade. And so it was junior kind of high school, it was a new idea. And he went to meet a whole new group of people. And the technology we had on his hearing aids is not the technology of today. And I do want to talk about how technology is improving. And it makes a huge difference for people with hearing loss when you are up on the latest technologies. So we’ll and we’ll get to that. But what would happen is in a group setting with kids, they were talking and Jax would miss things that were happening in the conversation. And he would say because I taught him to advocate for himself and say, Hey, I’m sorry, I didn’t hear what you said. I’d like to hear what you said. You know, just say you don’t you don’t just say oh, I’m deaf. I can’t hear you. I won’t you know, you could just say I’m sorry. I didn’t hear what you said. And he learned that even for someone who doesn’t have hearing loss, most times people don’t want to repeat themselves. They’re like Oh, forget it. Don’t worry about it was no big deal. Oh, it was nothing. And maybe it was nothing like I dropped my pencil. But the fact that he wouldn’t, someone wouldn’t repeat it for Jax made him feel lesser than outcasted missing out. And immediately I saw it work on his end on his ego. You know what I mean on his confidence. So going into the new school was hard enough. Meeting new people was hard enough making a change because the carpet was kind of pulled out from under them with their old school concept. So there’s a lot of emotion, the school closed. You know what I mean? It was like a weird situation. Private schools don’t normally close, you know, little mismanagement of money… But anyway, so and we found out about it through like the teachers told the kids in school, it was a crazy thing. So it was really emotional time for him lots of training, lots of change lots of issues. And going in there, I watched, because I was looking for it, I knew that he was going into a new situation, and I watched to see how that new situation was acting for him. And he had hang his head low. And he said, you know, Mom, I just, I’m not making friends. You know, I’m not people, you know, don’t know me, they don’t know my story. They don’t, you know, I try to kind of, you know, find my way and I can’t find my way. And so I just had to make sure he had a good strong connection with his old friends, keeping his confidence up with his old friends who were encouraging him and just continuing to let him know that the world is not set up for you that you’ve got to show up and shove your way through to get where you want to be. And so you can take two roads, you can keep your head low, and you can stay out of the conversation because life isn’t fair. Or you can say, I’m going to grab that unfairness, right by its neck, and I’m going to shake it, because I’m gonna say, Look at me, I’m here and I’m – I matter – I’m important. And, and so just continuing to reinforce that in him. Jax has a voice for himself. And it’s not always easy. But I think the technology and hearing aids has been a big change for us, because I’ll give you an example of this. I didn’t even recognize this because you don’t know until you know, Jax with his old technology couldn’t hear anything behind him. So I’m thinking he has a hearing aid, right, he can hear 360 degrees. But the way the speakers are set up on hearing aids, you know, and the way that microphones are kept, you know that where they catch the sound, of course it has to be the technology is feeding it from behind you. So I would talk to Jax in the kitchen, for example, if he was washing the dishes. And I’d say Jax, I’m the mom talking to you know what I mean? Like nothing. And I realized that I was he’s like, Mom, I’m sorry, I didn’t hear you. Like I was getting frustrated. I was losing my patience. I felt like my teenager was ignoring me which they do. But I was mixing my signals I was I was having mixed messages. So understanding what the disabilities are and what the barriers are to people with hearing loss and being an advocate for them whenever you can like, grab them and pull them to the front of the room. Hey, Jax come over here. You know, those sorts of things. Make him then I think able bodied to do it on his own when he’s standing in the back of the room. And he’s missing what’s happening. And I’ve now called him to the front and he’s got a different perspective on it. Now he might at the concert the next time even say to someone scuze me, can I can I get up to the front? I actually can’t hear you know, now maybe he’ll say that and someone will move aside and let someone up who needs to be closer

Shari Eberts 18:01
Well, good for you for giving him that training from the get go. Because it’s something that takes a long time to sort of have that confidence in yourself to know that you matter. And just because you miss something or you didn’t hear it doesn’t mean that you’re don’t deserve to know what’s happening. So you just need to ask again and advocate for yourself.

Heather Thomson 18:20
That’s right. 100%. He even would even ask someone he felt more comfortable with later. Yo, I really wanted to know what John said, You know what, I mean it might not have been a big deal, but I really didn’t hear him and I you know, I just wanted to know what did he said? He said, Oh, he likes Charlotte, you know, that’s a big news. That’s big news, right? I don’t want to miss that. Or oh, he hates you know, Mr. Bailey, the teacher, whatever, you know, so it’s like it just being engaged in what’s happening in the world around you is inclusive, generally speaking, let’s just talk about like peepers at night in the countryside, the crickets and the sounds they make with their wings. Some people are like, shut the damn noise off crickets. You know, I personally love it. And it’s one of my favorite things in the world. I just love hearing peepers. I just love the outdoors. And it invigorates me. And it was about four summers ago that I realized Jax couldn’t hear them, even with his hearing aids and he couldn’t hear them. And so I got him really into lightning bugs. You know what I mean? Because I wanted to pivot instead of leaving him like, Oh, that sucks you can’t hear them. Because that was really all I had left to say there was nothing that I was going to do to fix that. But so what I did is I found something else that happens in the summertime that he could enjoy. And that was fireflies, lightning bugs. So I was like, wait until you see these other guys. Jax these lightning bugs are crazy. Like you know, you’ll see them in the forest at night or something like that. I tried to and even if I didn’t do it that moment, I would think about how can I make up for his loss? How can I make up for it with something else? And that’s just what we have do, we just have to be mindful. You know what I mean of the world around us and people around us. And we have to know that no one’s coming to save us. But there are definitely people along the way to help us.

Shari Eberts 20:14
100% As long as we ask for that help, right,

exactly. That’s the key.

So let’s talk a little bit about stigma, because hearing loss is often very stigmatized. I know I battled it in my own life with my hearing loss for a long, long time. So how do you help work around that stigma and try and get that something that’s not going to impact him?

Heather Thomson 20:37
Yeah. So we have a history of hearing loss in our family, although it’s not really related to Jax’s my mother’s kid brother growing up was Deaf. And so he knew American Sign Language and he was also gay. So let’s just talk about stigma. So he was raised by, you know, Italian immigrant father, really caring, loving, who also had a tin ear, he would call it a tin ear. And it was like a bad ear. I don’t know why he had bad hearing. But I remember as a kid, my grandfather would sit me on the other side of his lap, so that I would speak into his right ear versus his left ear. And then you had my uncle Philip, who couldn’t hear and he was also gay. So what did he do? He moved to San Francisco, you know, in the Harvey Milk days, he went to where his community was, and he didn’t want to embarrass his his parents. So he never really told them his truth. But the stigma around being gay and Deaf, can you just imagine and he was killed, unfortunately, in a car accident by a drunk driver when he was only 35 years old. But I was able to share that story with Jax as a child growing up, of course, there’s a joke in the family that his hearing loss is on my side of the family’s fault. You know, so we try to find, you know, we try to find the humor in it. You know, life is tough, and everybody gets thrown different types of hardballs and curveballs at different times of our life. You know, and I try to remind Jack’s that we know his challenges. So there’s stigma around everything, mostly what people don’t understand. People are afraid. And I sit in, you’re not afraid. You know what I mean? You’re You’re not afraid of anything like you. You’ve dealt with so much in your life, like, look what you can get over. So you want to help make those other people feel more comfortable. So Jax is pretty open about it. You know, I got hearing loss, I can’t, you know, I can’t really hear hear that. You know what I mean, he, he stands up for himself. I think by me sharing the reason I bring up my uncle’s story is that I, I share the grass on the other side of the lawn, and that it’s not always greener. And I’ve worked with charities in my life with veterans of war, who have lost their hearing because of explosions and lost their limbs and all sorts of pieces of their life, you know, post traumatic stress and Tourette’s and all of those, you know, brain disorders and motor functions that go away. I’ve shared those stories with Jax. So he knows that life is hard. And sometimes he’ll he’ll be like, I don’t care. I don’t care about everybody else, like my struggle is my struggle. And I’m mad, damnit today. And I’m frustrated today. And I allow in those days, I don’t say Well, look at Jimmy over there, he’s gotten so much worse. But I just I hug them, I comfort him and I allow him to be angry that day because he deserves to be angry. And when you wallow in your pain, when you explode with your anger, you don’t stay there long. You know what I mean? So I believe we have to explore our emotions allow us to feel what our emotions are. And then we got to swipe off our knees, you know, wipe off the dust get back up, because it’s not how you hit the mat, because everyone’s gonna go down. It’s how you get back up, and how you’re going to deal with that challenge the next day. And like in anything in life, that’s what I encourage both of my kids, right,

Shari Eberts 24:03
that’s terrific. Now, if you think about his hearing loss, are there any silver linings, you know, from this for you or for him for your family?

Heather Thomson 24:14
I’ll answer that question from Jax’s his perspective. And I would say not one. You know, I would say there’s not one silver lining to the fact that he suffers this, you know, a disability and the fact that he can’t hear. I would say the silver lining in it for us is the people that we’ve met along the way. You know what I mean? The amazing audiologists you know, our audiologist here, Glen Datres suffers from hearing loss himself. You know, can people in the community you who are interviewing me about this topic, suffer from hearing loss yourself. So meeting people with like minded people, meeting people with hearts that are open with experiences to share. That’s the silver lining for us. And I know that that will be the silver lining for Jax as he gets older and maybe mentors, a young kid with hearing loss, or is there to advocate for someone because he has that experience that now, there now is just going through. So I think the silver lining in it is coping – is overcoming, even though you can’t fix problems sometimes, you know, we do figure out ways to overcome.

Shari Eberts 25:26
That’s great. So what advice do you have for other parents of children who are maybe just starting this process themselves with hearing loss?

Heather Thomson 25:36
Yeah, so I would say definitely get the hearing test. And I want to say this for parents, who have children of their own, but also have aging parents, you know, we do, the shoe does change, you know, change feet, and we start to become advocates for our parents as they age. And I think that denial in hearing loss is a big deal. And that’s a big stigma that Jax didn’t have the chance to deny his hearing loss. You know what I mean, but I know a lot of people do. And I think that getting those hearing tests going in and understanding what you’re hearing, really test that is eye opening. And there are so many, so many options out there, the first thing you want to do, like we did is you want to prevent any further further damage from happening. So you want to get after those hearing tests, because you want to understand if you have an issue you want to get on top of it. And some issues like ours may not be able to be corrected. But we then learned about the technology. You know what I mean? That that’s out there. And yeah, technology, just like your iPhone is expensive. You know what I mean? Like, this is now something that we need in our lives every day, right? And we’re beholden to this technology, who knows the information they take, who knows how they turn on our cameras or not like it’s all super scary, right? But we pay for it, because it’s a way of life. And I think that when people understand the technology of hearing aids and what they offer today, versus what they’ve offered in the past, and the fact that just like there’s a new iPhone every few months, that technology in hearing appliances changes, and stay on top of it. And yes, we and we should advocate for this, we should lobby for better coverage for hearing devices, because I don’t believe that health insurance coverage as much as they should. But I will say and I know that they’re expensive, it’s an investment that you cannot turn your back on. And the hearing aid companies today they stand behind their their quality of sound, they make it so it’s intuitive hearing. And that’s really important for people with hearing loss, because then your hearing is it’s a sense, right? Just like our tastes and our smell in our eyes. It’s a sense. And when you put in an appliance and you know, a hearing aid that has technology that gives you back intuitive hearing, that changes that changes the game. So you know, my kid, Jax has been wearing hearing aids since he’s a kid. And you know, we got the insurance on them because God forbid the last one which happened, by the way, 100 times, but we we wound up finding them also, it taught Jax maybe too early, but a sense of responsibility for ownership of something that was expensive that he needed it that he couldn’t, it’s like eyeglasses for a child right? You know, if your child can see we go to the eye doctor, we get them eyeglasses, we know how expensive they are, you know, it’s something that we have to do. So, believe in the technology. Go get the hearing tests, interview your doctor, just like it was an interview, you know, understand what they are and what they feel like their expertise is and how they feel like they can help you and go for a second opinion. You know, it’s always good to have a reference and a resource, especially with information you don’t know, go for a third opinion, if you’d like to, you know, so those are the things that I can say, don’t be afraid to get out in front of it. There are solutions out there, and you will change the direction of someone’s life. And that is whether they’re young, and they’re learning cognitive behaviors, language skills early on, or they’re aging and they’re being isolated and left out of conversations, because they are in denial about their hearing loss or no one’s really asking the question, Mom, can you hear me? You know, if you go in your parents house and the TV’s on, you know, 52 You know what I mean? Every time you walk in, everything is so loud. Go get him a hearing test. Get them back into life. Don’t leave them out.

Shari Eberts 29:38
Excellent advice. And that’s a great way to end so I thank you so much for joining me today. It was a great discussion. And I wish Jax continued success with his hearing loss journey and for your family and all wonderful things. It’s thanks so much for sharing your story and your advice and your experience with us. I really appreciate it

Heather Thomson 29:59
It’s all my pleasure I appreciate you having me and we got to keep the conversation going. Let’s Let’s clap for CODA. CODA winning the Oscar! You know, that was a beautiful thing for our community and just keep talking about it. Keep getting out there and over 430 million people globally are suffering from disabling hearing loss. You’re not alone. We’re here for you. So thank you so much for covering this. I appreciate you too.