Read the full transcript here

Today on the All About Audiology Podcast, Dr. Saperstein speaks with Jessica Nelson. This episode took place via a chat on Instagram Live. Both of Jessica’s sons are deaf.  Although both of her sons are deaf, each one has their own unique story. Tune in to listen to her story.

This week on the All About Audiology podcast:

• 5:00 – It is good to follow your intuition or gut if you feel the need to get your child’s hearing examined

• 15:00 – Every hearing loss journey is unique and different. It all depends on factors such as anatomy, age, support, access to health care, personality, and one’s brain.

• 24:00 – Every family has to make a choice regarding what is right for their own family when it comes to communicating with your child who has a hearing loss.

• 31:00 – Even if your kid receives an implant, it is still important to support their hearing needs in different environments because the way they’re going to hear in one environment may not be the same in another environment

• 38:00 – Auditory Verbal Therapy does not work for every child!

• 42:00 – Even if one has an interpreter working alongside them, one should still talk to a patient with hearing loss as they would converse with anyone else

• 45:00 – Don’t get wrapped up in the fact that your kid has hearing loss; rather get wrapped up in your kid in general!

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

Email: jnelson0307@gmail.com

•  Janet DeGeorge, who is the Executive Director of Hands and Voices — tag Episode in WP

• All About Auditory-Verbal Therapy- Episode 27 with Elaine Matlow Tal-El, AV Israel
• All About Sign Language – Episode 15 with Kimberly Sanzo
• All About Listening and Spoken Language – Episode 72 with Dr. Carol Flexer
• All The Things You Didn’t Learn in Your AUD Program – Episode 73- with Mallorie Evans

Transcript:

Dr. Lilach Saperstein

Hello, hello and welcome everybody. This is a live episode of the All About Audiology Podcast. On Instagram Live, we are being joined very soon by Jessica Nelson, who has a lot of life experience to share. She is a mom and she is going to share so much of her experience. I’m Dr. Lilach Saperstein, the host of the All About Audiology Podcast.

First of all, thank you so much for joining me. So fun to talk to you.

Jessica Nelson:

Thanks for having me. 

LS

Welcome to our thank you again, listeners.

JN

Good to see you again.

LS

Awesome. I want everyone to know that we’re gonna be talking for about 20 minutes today. I got some questions for Jessica, and after that we’re gonna go and convene over at Clubhouse. If you’re not on Clubhouse, get on it, because it’s so fun. We can do real Q&As and hear from everybody kind of equally. Instead of like, we talk, you listen. So, that’s gonna be fun. And I’m Dr. Lilach over there. D-R-L-I-L-A-C-H. Do you want to share your handle Jessica?

JN

I am simply Jessica Nelson, J-E-S-S-I-C-A N-E-L-S-O-N.

LS

Awesome. All right. So Jessica, tell us a little bit about—well, the topic of today’s conversation is how do you process? How do you remember the experience of finding out that your child is deaf or hard of hearing? So would you like to tell us about your kids and your experience there—basically anything you want to share?

JN

Okay. So my kids are now 17 and 11. I found out that my 17 year old had hearing loss when he was four. At this point, when I think back I’m not sure if it was a gradual hearing loss, and I didn’t all the way pay attention to all the signs or if it was kind of overnight, but he was born hearing, passed all of his newborn hearing test, he had developed speech and started, he actually knew how to read by the time that he was four years old. He started to get a little slur. His teachers in preschool started to notice a little different than the way he interacted with everyone. He often asked for confirmation, like if you told him to go put something in the trash, he would walk over to the trash and say, “Her? Right here?” and if you told him to put his shoes on, he would ask like over and over to make sure he understood what you were saying, and I haven’t just thought that he was being silly or—you know, he’s still a little boy.

So one day we were outside, and [inaudible]—but one day, we were outside, we are playing on the swing and ice cream truck came by. He jumped off the swing and ran in the house to get his wallet because he wanted some ice cream, and he’s like, “Mom, I gotta go get my money. I’ll be right back,” and so the ice cream truck went down to the end of the cul-de-sac. Well, I knew something had been going on. So, this is like my special—my own hearing. When he came back and asked me if he wanted to play hide and go seek, and so I had him hide, and he’s hiding. The ice cream truck came back and couldn’t see it, and it turned around the neighborhood never noticed it, and I just cried. So at this point, I knew that something was going on. I knew that he did have some type of hearing loss, but I wasn’t sure the extent of his hearing loss.

LS

Got it. So because he couldn’t hear the music from the ice cream truck. He was only noticing it visually when he saw it. My goodness. So, let me just say about the thing you mentioned about how he would ask for confirmation and how he was actually doing all of these communication strategies, compensating for not being able to hear, which are the things that we would train children on and help families to incorporate those things. He was doing that naturally just as a way to communicate and make sure he did the right thing. So, that’s so interesting that he was doing that behaviorally.

JN

Yeah. When I think about it, because there is much that says—he’s 17 [now]. So, back then he had a LeapFrog, like that was the video game to him, right? And so he would play his little LeapFrog Learning game and he would hold it up to his ear and it was loud. It was like a mirror. “Why are you playing—” but it was a lot of music. He liked music, but I thought maybe he was jamming. I like to play my music loud, you know?

So like I said, looking back after we got the diagnosis, and when we got the diagnosis that was even crazy. I took him to his pediatrician—PCP whatever—told him what happened, and then he’s like, “Oh, he’s fine, but if it makes you feel better, we can test his hearing.” So they took him into the room and checked his hearing. He passed the hearing that they gave them there, and I was like, “Well, no. Something can’t be right. His speech started to get a little slurred. He didn’t hear the ice cream truck, he keeps on asking for confirmation so something’s going on. Maybe he’s autistic. I don’t know. But something isn’t the way it was this time last year. Something is different.” So I ended up just taking him to an ENT on my own.

LS

Listen to that. Mom intuition right there. Keep fighting. Keep pushing, even when other people are like, “No, everything’s fine.” You have that sense, even if you’re not sure what it is. Go check it out. Yeah.

JN

Yeah, definitely. Definitely. So that test came back then he failed, and that was a devastating—even though I knew something—like I wanted—I was expecting an answer. So as happy as I was to know that he had hearing loss, the way the hearing loss was delivered.

LS

The news, yeah.

JS

That was hard. So the doctor—you go in and you have the audiologist does the hearing test, and then you go back another day to talk to the ENT—I’m a crybaby. Sorry.

LS

That’s okay. This is a lot. You know, even though it was years and years ago, these are things that affect the rest of your relationship and the rest of everything that you’ve been through with him. So, it’s really okay. Yes, please do.

JN

So, I go back and meet with the ENT, and that’s when you get the actual diagnostic, right? So he’s like, “Well, your son is definitely going to need a cochlear implant. There’s nothing we can do.” I didn’t know what a cochlear implant was. For a long time, I didn’t even remember the word. I was like, “He needs something called a co—it’s two words that—I don’t—like—” It was like he didn’t want us to be there anymore. I didn’t feel like he even wanted to help our family—there’s a family, take them to this other place, that guy over there knows what to do with kids like yours, and being so long ago, there were no—now I feel like there’s more support groups, more—Facebook wasn’t even what it is now. At that time, Facebook was only for college kids, and I have the oldest kid of all my friends. [Laughs] None of my friends really had kids at that time, and those that did definitely didn’t have kids with hearing loss, and so trying to find information on what a cochlear implant was—is he really deaf that he needs the cochlear implant? I understand hearing loss, but you’re telling me that he’s deaf to the point that he has to have a surgery that would make him hear? That’s like a new level kind of deaf. That doesn’t make sense. And then I also have the process that he can’t hear, but there’s a device that can help him hear, and what does that look like? Does that mean that he’s going to hear just like me? What does it mean that this device is going to help him hear? So I took him to two more doctors, for hearing tests,. Well, two more practices in general to get a hearing test, and then to see with that ENT, and I remember one of the ENTs was over excited to have a kid that needed a cochlear implant. He was like all these things, he brings out like the demo case of the cochlear implant, in this big shiny briefcase. It looked like it was made out of copper, silver or something, and he popped it open and he showed me the internal device and the external device and telling me about how they do the surgery, how much the surgery costs, how much he’d get from the surgery and how like he doesn’t do as many as the doctor that I was referred to from the first audiologist that we went to. “He does about 10 of them a week. I do about four.” I was just like, “This is so overwhelming,” but now I’m like, “Okay—” 

LS

Yeah, totally irrelevant to what you—

JN

It’s probably a really cool device but it’s also a big moneymaker. So is this really the best decision that I should make for my kid? Because people are obviously very excited to implant kids because it costs a lot of money. So it took a lot of research and studying for me to figure out what it was that I wanted to do. I have a cousin who’s an anesthesiologist, and I called her to see—I mean, I know they’re different, totally different parts of medicine, but you know, it’s that, “Girl, you’re the medical field you can answer my question.”

LS

That’s right.

JN

So, she was like, “Get him an implant, so he can have a regular life.” “Okay.” And then I have a cousin that has always had hearing loss, but she’s always had hearing aids, and I asked her about her thoughts on them, and what she would do, and she was like, “I don’t like those things. They look stupid. Don’t get him one of those.” So now I have two people in my family that I trust that have totally opposing opinions about the device, but my one cousin who said they looked stupid—I mean, that’s kind of shallow, right? That’s a cosmetic thing, what you look like. It’s not that big of a deal, and then my other cousin who was in the medical field really didn’t have—couldn’t answer any of the questions like the medical questions like: how risky is the surgery? Is there a lot of loss of blood? I had a lot of questions that [were] going on that no one could really answer. So, then I did the worst thing that you could do, and that was I started looking at surgeries online. I saw exactly how the surgery is done, but for me, it made it easier for me because then I knew the language and the questions to ask the surgeon. So, of course, clearly, we ended up deciding on getting him an implant and everything moved really fast. Because five was the magic number. You have to implant your baby, your kid by the time they were five, or they wouldn’t get any benefit from having the implant different. It was pretty much no use, and he was four when we really started thinking that he had hearing loss, four and a half by the time he was really diagnosed and got his hearing aids. So we had to like really, really move, and he got his first implant three days after his fifth birthday. Six months later, he got his second implant, and that night, I found out I was pregnant with my younger, and so having two deaf kids, I thought I had it all figured out, like, “Oh, I know what brand implant to get them.” “It makes sense to get the exact same one,” in my mind. It only makes sense to get the exact same one my older son had. That way they can share batteries, they can share extra parts, whatever. So, we ended up doing that, getting him the exact same kind, but their hearing journeys have been totally different.

LS

Right, because your older son was speaking. Your oldest son had hearing then lost hearing, and the younger son was born deaf. If you don’t mind, I have a little reflections for you about what you shared about everything.

JN

I talk all the time about these reflections. [Laughs]

LS

Okay, yeah. You said, how you got the news was, first of all on a different day, with a different person who wasn’t even there, like the ENT, not the audiologist, and I think we need to realize, as professionals and people listening in our world of All About Audiology. What does that look like when you make an appointment and hold off on the news and hold off on giving people the results of the tests—that like the days between that must have been so difficult, to say the least to, wait and anticipate worry, and then for the doctor to say, “Yeah—” like nonchalant, “He’s deaf, and here’s what you need to do. I’m telling you. Cochlear implant, boom, boom, boom.” I wonder if you recognized that. At that point, did you feel still that you had a choice that you knew what was happening, or that was just like, they’re telling you what to do and you’re going to do it?

JN

So in hindsight, I definitely know that I did what I was told. Do I have regrets for my older son? No. Do I have possible regret for my younger son? Yeah, and we’ll talk about that more later. But no, with my older son, I definitely relied on everything that the professional told me. I didn’t know anything about hearing loss. I didn’t really think about developing speech and language. It’s not really anything that we’re really taught. Like, you hear people talking and you pick up people’s words, and that’s kind of it. So, with him, I definitely did everything by the book. If I did what the doctors told me to do at the—I mean, he’s great. He’s literally great. He is in all honors—well, now he’s got dual enrollment, and AP classes. He graduates from high school in June, and he’s going to a really good college. He’ll be in New York, and Virginia is gonna be far away, but he’s comfortable enough to make that trip. He’s got the confidence that he needs. He’s very, very well spoken. Most people don’t know at all that he has a hearing loss. He’s been in school with the same kids for years. Last year before they got out with the pandemic, a friend one day in the hallway, actually noticed this hearing, his cochlear implant, and he was like, “Man, what’s that on your head?” He was like, “I’ve had it the whole time.” He’s like, “What is it for?” He’s like, “I’m deaf.” He was like, “Oh!” [Laughs] He does [inaudible] low.

But he does incredibly well. That actually was a problem when he was younger. I had to remind people, “He’s really intelligent, but he is still deaf.” When as a teacher, when you turn your back, if you don’t have one, that FM system, he’s losing some of the decibels—he’s moving some sound quality. It’s harder for him to follow. So with him, I had to remind people that he does have a hearing loss, that he does need these accommodations, that he will need some help. With my older son, I have to remind people that he is deaf and he’s going to grow up to be a deaf adult, and so he’s cute, but you can’t baby him because cute isn’t going to work. So while I appreciate the love that people give him, he has to be pushed in ways that other kids don’t have to be pushed. They’re two totally different kids. Two totally, totally different kids.

I feel like the story is kind of all over the place. I’m sorry, guys.

LS

No, that’s okay. That’s how that’s how we remember things. The connection.

JN

My younger son was implanted. So he did early intervention. He had hearing aids at about three months. At the time, he was the smallest kid that the audiologist that fit for hearing aids. and he wore his hearing aids until he was a year, and then he got his cochlear implants, and he got them two separate surgeries. His anatomy is a little different because there’s like two turns in your cochlea, right? It makes two, two and a half turns. So he had in—like, if you think about it as a straw, so there’s like a little thing that’s less than a little membrane or something that splits it, and when they do the closer implant surgery, they feed it through the whatever piece they go through, and the leads rest on that membrane that divides the turn. So he didn’t have the membrane, and he only had one and a half turn. So that gives him a different outcome from what he’s able to gather from his implant. His anatomy just didn’t set up.

LS

Oh, that’s such an important point. I wish more people would understand that. There’s so many factors for how somebody’s going to do with an implant, including their anatomy, the age they were when they got implanted, what support they have, what access to health care they have, how often they go to mappings, and just their personality, their brain, how they are and their family. So we can never—even you who had two kids in the same family, so many different factors for each one.

JN

So to get the first implant, everything went good. He got the second implant. Actually, so he was implanted in Charlottesville, which is about an hour away from where we live. They don’t keep kids overnight. They let you go home, like outpatient surgery for them. They don’t well—no matter what, it’s outpatient, but sometimes they do outpatient and you stay in observation overnight, but this particular facility didn’t do that. After a few hours, you go home, and so since everything went well, with the first surgery, we were like, “Oh, what’s the point of getting a hotel? It’s only about an hour away. Back home, he is going to sleep.” So we get home. As the night falls, he is having fluid come out of his nose, and I was like, “That’s weird.” We had no idea. So we called the doctor on call and it was like a resident and the resident is like, “Call back in the morning.” That’s it. “Call back in the morning.” I was like, “Okay.” So, like 30 minutes later, I call back, and I’m like, “I don’t know. I’ve never seen white liquid come out of someone’s nose. This doesn’t make any sense,” and again, the guy is like, “No, it’s okay.” So at this point, I’m like, “Okay, I’ll just take him to a local hospital,” because it would—is it tears? I don’t have a clue what this is.

So as I’m getting him dressed to take him or getting stuff ready, to take him to our close hospital, the actual surgeon calls. “Bring him in here now. I think that spinal fluid.”

LS

So how old was he at this point? Like nine or 10 months?

JN

He’s a year and a half.

LS

Oh, a year and a half. Okay. Wow.

JN

And so we take them back, and this is the same day. It’s within a 24 hour period. So they decided to take that from his leg, and like pack in his ear to stop the spinal fluid from leaking through his nose. We thought that everything went well for that. He stayed in the hospital for like—I think we were there for like two days. The day that he’s about to get discharged and walking around the room picking up his toys, and he dropped something and I bent over, which means he bent over. And spinal fluid comes out of his nose again, and so this time, they ended up putting him in an induced coma and ended up taking out the implant and packed it again, and he’s been fine ever since then. No, he wasn’t born premature, and so that’s why I say when it comes to my younger son, do I say—do I have regrets? Because at the end of the day, he didn’t need to go through all of that just to have hearing. I could have learned that, and I do. I do sign. So there’s so many questions.

I feel like when we are hearing parents, and we have deaf kids, all we know is live from hearing side, right? And so like so many parents say like, “Oh, well how would they listen to music?” which makes sense because we listen to music and we relate times of life with music. Music is very important to a lot of people who have normal hearing, that you worry about them being in speech and just how you’re going to teach them in general, or really not even probably teach them but really, how do you connect with your baby that doesn’t communicate the way you communicate with them? At the end of the day, that’s really it. How would they know that? They won’t know the sound of our voice. I get that but I also feel like they don’t know what they’re missing.

LS

Yeah, and most people don’t have any experience or any exposure. They’re never met a Deaf person. I’ve never seen a Deaf parent communicate with their baby, and exactly like you said, what are frame of references for connection and communication is what we know. So I’d love to hear about your journey with signing and with the Deaf community and what happened there. 

JN

So, it’s been very intimidating, even to this day, years later. Because from what I’ve always heard is the Deaf community is very welcoming of cochlear implants. I remember going to a deaf—I think it’s Deaf Con, or I don’t know what the name of is—something that they do every year at Gallaudet University, and so I took both of them because I’m like—at the end of day, either you’re like, “I have no problem. I’m proud to say that they’re deaf regarding—” So we log into Gallaudet. I bought tickets to go to this thing. We walk into the Gallaudet and they’re all these—as soon as you walk into the gym, there’s all these people that it was like shocked people came in selling their T shirts and selling flags, you know. On their T-shirts that have cochlear implants for big Xs over them and they say that if you give your kid a cochlear implant, that you don’t love them, which couldn’t be further from the truth, but people make the best decisions with the information that they have, period! And if you are a hearing person, and you want your child to hear and you give them a cochlear implant.

But going back to how we navigate, it’s been interesting.

LS

Yeah, yeah. You could be honest.

JN

Yeah. Interesting, I think is the nicest, whereas time has gone on, I feel like the Deaf community as a whole is more open to kids or people that have cochlear implants. I think more Deaf adults that have been—seriously deaf adults that were born deaf, and now they’re in their 40s, especially 30s. I’ve met a few people that are about my age, late 30s, early 40s that were born deaf, and as they became adults and had children, they’ve decided to get implants. So, I don’t know if that’s as it was years ago, but I had people inbox me—well, not people, one person. When Facebook first became public, she sent me a message. There’s this cute, cute picture of my older son on the swing at school, and his face is just the most excited, joyous face, and you can see his implant, and when he was that small, he changed his cover like every day to match his shoes. We had so many implant covers, it was ridiculous. Spiderman, Ben 10—I think we had about 20 or 30 implant covers for him to trade out. So, it was very easy to notice his implant at that time, and so she sent me this message that was being—like, I had no idea who this lady is and it was like the nastiest message telling me that I didn’t love my son because I decided to give him an implant and I was a horrible mother because if I loved him, I would have just accepted him for who he was.

LS

That is so tough, and I feel like people speak from their own experience, and people know what they know and that doesn’t excuse bad behavior like that, like sending random people messages that you don’t even know. It’s just the self-righteousness of I know better on every side, like the people who are like, “You must use this,” or, “You must do that.” No one must do anything and they certainly don’t have to do what you think. You don’t know all the factors and you don’t know what people—what they knew what they wanted, what their family was like, you don’t know anything about anyone from a picture. Definitely not, and that’s so tough, and I think that’s one of the biggest missions of the podcast here—is to bring some unity around, different choices, but to hope that everyone knows what those choices are. I feel that at that time, you being a hearing mom, they said we know what to do, here’s a cochlear implant, and then when you look over here to say, “Oh, I actually want to be involved in Deaf community. I want my children to be exposed to other deaf people,” and you felt rejected there. So it’s like everybody boxing you in. I agree with you that things have changed over time. Definitely, with the internet, allowing everybody to connect more, I think we saw more differences, and also, as much as the cochlear implant has improved—the technology really has exponentially gotten better year over year, it is more shade, like a gradient that it’s not deaf or cochlear implant. It’s like maybe you could have some hearing loss or some frequencies and have a clear implant or you could you know, sign and there’s a lot more ands instead of either/or, and I hope more parents know about [that].

JN

Yeah, yeah. I’m clearly an advocate of cochlear implants. I have two kids, but I am a bigger—the biggest advocate of doing what’s right for your family, period. And you may decide, when your kid gets an implant or you first get the diagnosis, you want your kid to have an implant because that’s what’s right for you guys at that time. But as time goes on, if that kid doesn’t want to wear and the implant—some kids do. Believe it. At first I thought I didn’t understand that. I was like, “What do you mean? You have the opportunity to hear and then you decide you don’t want to?” It’s exhausting for them. I don’t think it ever gets to the point that it’s not exhausting for them, especially in different environments.

So my older son first, well-adjusted as he is, and how amazed the world seems to be by him, when he is in a private setting, he changes. He becomes like his best self when he’s in small group, then he is very comfortable. He laughs, he interacts, he engages, he’s, he’s a different person, even like—we have a pretty large family. So if we have like a Thanksgiving, and there’s 25 of my family members, his personality is totally different when family members come over, and it’s fabulous. His conversation is totally different. No matter what, it’s still a device, and so it kind of makes me chuckle a little bit when I see advertisements about cochlear implants and they just have crazy things going on, like a person is driving a convertible down the street, at the beach, talking on the phone with the top down and then they’re following everything. That’s a  commercial. I don’t have a cochlear implant, but I know that when I’m in the car with my son and I had the window down. He’s like, “I can’t hear. I can’t understand what you’re saying.” 

LS

Yeah, all you can hear is the wind. Yeah. I think there was one with—it was  like an amusement park, and amusement parks are very intense sensory environments. There’s like people screaming on roller coasters, there’s music everywhere, there’s such a big crowd—that’s not the ideal environment for communication.

JN

Yeah, and speaking of everyday, things like that. They always have to adjust. My kids love roller coasters. When they take off, when they ride roller coasters, they take off their implants and put them in their pocket. When they go swimming, they just leave their implant at home.

LS

Yeah, yeah. I want to share what Monica here has commented. Monica says, “I have a moderate hearing loss. My personal personality changes a lot depending on the social dynamics happening at the moment.” Thanks for sharing that. Monica. It’s so true, and I think it’s important for more parents to be aware of that and help their children not to put them in situations when they’re young—not to put them in situations that are so, so challenging, and then not give them tools how to handle that and be like, “Why are you sitting alone? Why are you crying?” and it’s like, “This is why.”

JN

We’ve been in COVID for so long. I think it was the summer before that, I went to a distant family member’s cookout and it just so happened that her husband has a family member who was deaf, and I think she has a cochlear implant but she got hers later on in life. I think she may have been about 12 or something when she got her implant. I know she ended up going to a deaf school for high, and from what she said, she loved it there. She was in a community where it was easy for her to communicate with everyone. She had a great, great time. Her parents felt like when she was at that school, that the deaf community taught her that her parents didn’t love her, and they were not tolerant of her because they didn’t know—she is older. I think she’s like 23, 24 at this point. So, there was division if it was able to be division between her school life and her family life really because the communication differences, but the point of the story is that she did have on her cochlear implant but her communication at this point, even with her cochlear implant, she needs to see you in order to tell and this is like a real country [inaudible]. There was the smoker going, the DJ is going, you got people over somewhere else playing horseshoe. It was for real. Everything you see on TV is about Southern black families having a cookout, that’s exactly what it was. So, she has a baby. Her child at the time was about six months and her kid was crying and she’s standing maybe like three feet away but her back and she couldn’t hear her cry, and so her aunt tried to get her attention by calling her name. She didn’t respond to it. She didn’t hear it and she literally didn’t hear it. So her aunt, she called her name like three times. Her aunt hit her. She’s a grown woman with a child that has a hearing loss. She didn’t hear her. Her aunt hit her. “I’ve been calling your name.” This is your niece. You’ve known her all her life. She did not hear you. She’s not being disrespectful. She’s not ignoring you. She does not have the capability to hear someone calling her name over the sound of the fish frying, over the sound of the horseshoes, over the sound of the car, over the sound of the laughter, over the sounds of the DJ, and then you startled her. She’s in her safe place with family, and you hit her to get her attention. It made me so mad. Never outside, in the country. It gets super dark out there. There’s no city lights anywhere, and they have like the little citronella candles on the table. That’s enough for us to see and follow conversation because we don’t need to see lips in order to follow a conversation. That’s not what we need. We hear, right? Her parents don’t mind, and so they’re getting frustrated with her because she cannot follow the conversation. How hard is it to learn a little bit of frequent sign language so you can communicate with your child in different environments?

For me, no judgment. Really, no judgment, but it breaks my heart when people feel like implant is the absolute bottom fix. It’s not a fix for a Deaf kid. It is a device, and it’s great. They can do really amazing things with it. But when my kid takes his implant, he can’t hear. When my kid is playing soccer, or baseball and I’m on the bleachers and he’s on the field, if you’re calling his name, he’s not going to hear it like the other kids on his team. He’s not going to respond to that.

So yeah, I guess my little PSA is even if you if you do give your kid an implant, still give them support to hear in different environments because the way they’re going to hear in different environments is not going to be the same, and they may do activities that really make sense for them to take their implant off. I met a kid at [inaudible].

LS

Yeah. Yeah, I think you’re so right. First of all, your story with this cousin, or family member is heartbreaking. Absolutely heartbreaking. And to know, like you said, the amount of effort it takes to communicate with people who are who are not understanding the needs that you have, and forget advocating, blaming you for not being able to hear, that’s so, so difficult, and then the visual cues, having good lighting, you have a set up that makes sense for people—you have to think about these things for inclusion.

When did you start to learn sign? Because you came into that event, and you didn’t feel welcome there at all—that Gallaudet event. So when did it kind of come around?

JN

With going into getting Malakai, my younger son implanted, I didn’t think that we would have the journey that we had with expectation and everything but I knew that it wasn’t going to be the same for him as it was for my younger son. First of all, the whole first year, he had a hearing aid but if you are a candidate for implants, then your hearing is bad enough that you’re really not getting much from the hearing aid anyway. So, I decided to do something with him because I needed him to have language. He needed to have language. He can’t go a whole year. He already did gestation with no sound, and then he’s gonna have to go a whole year with no language? That wasn’t a good idea for me, based on the little bit I knew about speech and language development, right?

LS

Yup. You learned a lot.

JN

So we started to do sign for that reason, and then, of course, he got implanted and we did we did auditory verbal therapy, and that was tricky too because at that time, auditory verbal therapists, we’re not into giving visual clues and so you just like, “Ooh, ooh,” that didn’t work for me for my younger child. For my older child, he took well to it but my younger kid, it didn’t work. I was like, “No, he needs to see you, and there’s nothing wrong with him seeing your mouth in order to tell but you know—” Like, it doesn’t make sense. Everyone’s like, “Oh, they lipread so well. But you give a kid a cochlear implant that you don’t want him to see your lips. None of this stuff makes any sense.”

When my younger son was born, going through hearing loss with him. I was just like, “This doesn’t make any sense. None of this makes any sense. None of this makes any sense. I don’t like this. I’m not going to do this job. Ya’ll can do the job you want to do. That’s fine but I’m not going to do this.” So, he needed his sign language, period. He needed sign language to understand what we were saying to him, and it took him longer to understand the importance of language in general.

So, I was fine with him and he didn’t produce any sign. It took him a while but he understood it so the reception, right? It’s receptive. Yeah, the receptive language was there, but the—

LS

Expressive.

JN

Expressive. Okay. The expressive language was not. So he started to like going into the school building at three. [There] was a deaf and Hard of Hearing teacher in kindergarten. So he started. He would sign himself [in] first grade but his speech got to the point that people couldn’t understand and he really wanted to talk to people, or not—he’s always want to talk to people, let me stop that. He is very, very overly social. Very friendly but getting to the point that people outside of our household, could understand what he said, he was probably in really like the second or third grade.

LS

So you were kind of doing this dual thing where you were going to the auditory verbal therapy, but you weren’t on board with all the principles, and then you were also introducing sign and you have—

JN

Sorry to cut you off. I got to the point with his auditory verbal therapy, that I was like, “Hold on. I pay you.”

LS

[Laughs] You’re the best. That’s right. That’s right. Parents, parents, pay attention.

JN

If I say that this is what I want for my kids—so we’re in this session, he was having a meltdown because of the covering of the mouth. That day, I just wasn’t on that train. I couldn’t take anymore, and I’m like, “Okay, well, this isn’t working, and so either we’re going to sit here for an hour having him freak out, because you’re covering your mouth, or you can not cover your mouth so we can have a successful session.” She’s like, Well, this is auditory verbal therapy. We don’t do that,” and I was like, “This is a therapy session that I paid for so either you can do as I ask, or we can leave and we don’t have to come back anymore.”

LS

That’s right.

JN

And that’s exactly what happened. The office called a few times and wanted to know why we can’t get back. Because the speech—I remember her saying, “Well, he has enough hearing that he can really gain a speech and speak well,” and I was like, “But if he wants to use sign language, then that’s up to him.” Some people do have enough that they can gain speech pretty well, but their voice quality is off and then there’s jerks in the world that make them feel bad because their voice sounds different so then they choose not to use their voice and use sign. What is wrong with that?

LS

That’s right.

I want to just tell you, as an analogy, that my grandmother, when she was a very young girl, she lived in France and it was during the Holocaust, she was hidden, taken in into a monastery with nuns to save her life. So she was pretending to be an orphan. Her mother put her there—her mother, my great grandmother, paid the nuns, that she should be an orphan in this orphanage, so that they wouldn’t take her for being Jewish, and she had to pretend that she was a Christian, little orphan and although it saved her life, she came out of that with very immense trauma from the way the nuns treated the kids.

One of the things she talks about is that they would tie down their left hand and everyone had to be right handed no matter what to write, and she was left handed and how much of a struggle [that was] and they would tie her hand behind her back, or would hit her with a ruler. In the big context, there was a Holocaust, and 6 million people died, it’s almost hard for her to say this was traumatic; meanwhile, it saved her life. She was six years old. She was tiny. So sorry to go off on this tangent but sometimes I think about the left hand-right hand thing, and so she was left handed. Makes zero implication on anything else in your life and yet, they treated this as such a defect that they had to like, eat it out of her, and she can write with both hands. That’s kind of her party trick is that she’s ambidextrous but it’s horrible that she had to go through that.

And when you’re telling the story, it sounds to me like sometimes we want to help in such a roundabout way that we are harmed on the way. That is not gonna work for every family. Is auditory verbal therapy awesome and helps a lot of kids become verbal and auditory? Yes, and it works for a lot of kids and it’s very great for families to really invest in that, and that their child can accept that and receive that.

But you were seeing it wasn’t working for him. It was making him frustrated, and he had this other way of communicating. So yeah, I’m with you with you on that. [Laughs]. And to also add to this point of like, we don’t compare traumas. We don’t go like, “At least you have this, at least you have healthcare,” At least, at least, the whole at least. There is no at least. Anything that makes you feel overwhelmed, unheard, a bit misunderstood, overlooked, that can be traumatic to you and affect you and make it difficult for you to communicate or stay present in life, and it affects you years later too. So I’m proud of you as my point. [Laughs]

JN

Thank you. Yeah, I think I don’t know that I would have had that strength with my first son. It was kind of different. He didn’t get frustrated. Well, maybe. I don’t know.

LS

Well, you were seeing progress, right?

JN

Yeah. I think going through it two times, maybe made me a little different and seeing it from two totally different angles because the first time was like, “Oh, the cochlear implant is this miracle device and it’s going to make our lives normal and we’re going to do everything that we want,” to now. Even though they’re six years apart, they’re only a year apart in hearing. Yeah, a year apart in hearing but I had been through auditory verbal therapy, I had been through the surgery, I’ve been through finding the school, which was another journey to finding—but I just felt more confident in what I—and I also get to the point that I started thinking about the fact that these are professionals. We all have jobs, period, and that is their job.

My job is being because his mom. I have a job. I talk to a lot of parents when I work. I don’t share at work what I share with my personal friends. It’s my job. I look at things from the perspective of my job, so I can keep my job. So if I were an auditory verbal therapist, I wouldn’t tell anyone, something that’s going to make them not come to me because I need them to come to me because I need to make a living so—and I’m not—please don’t take it as me trying to say not to trust your therapist or anything like that. I’m just saying that make it as much of a partnership, as you can interview that if you can. Maybe instead of going to the one that’s as close to your home that you go a little further. It gets to the point for our audiologist—I didn’t go to the one that’s right here in my city, 30 minutes away. I drove an hour and 15 minutes a way to get to audiology, because that audiologist was more patient with my kid. So my older son did not—getting back for him was an episode. He cried, every time he got mapped. It was an adjustment and we had to go through like a whole production. Every time you he’d get mapped, he has to get adjusted to his new mapping. My younger son doesn’t care. He gets his mapped. He points back at little smiley, he’s happy, and goes on about his day. It doesn’t bother him at all. So it was worth making that drive because it made him more comfortable.

I get that it may be a certain level of privilege that allowed me to drive out there so I don’t want to ignore that but if you can, make a way to do that. It definitely is worth it. Them being uncomfortable being uncomfortable—being comfortable with their health care, because after all, they’re going to get the [inaudible] they have to do it for themselves, right? So that relationship with an audiologist is going to be a relationship that they have to trust, and so I feel like I’m teaching them what they need to expect from their caregiver.

LS

Ah, what they’re going to tolerate. That’s right.

I just had also an amazing conversation with Janet DeGeorge, who is the Executive Director of Hands and Voices. It was amazing. She’s [an] amazing woman, and she was talking about this topic to the moment where her kid was old enough that the audiologist asked her daughter questions, and she said she was like jumping in to answer and then she said, “Oh, wait. I’m not the patient.” At a certain point, you’re the parent, a mom, you’re in charge, you’re the manager you’re answering, you’re in charge of everything, and then you have to hand that off and let them be their own person and their own advocate. And they their journey, you hand it over that. That was a whole journey for her.

JN

Yeah, it’s really big. I remember—so with my younger son, when he goes to the doctor, I request an interpreter. He needs to know now [that] that is your right. You have the right to an interpreter. So whether he’s going to the dentist, or the audiologist or the ENT, but we really don’t go to the ENT but whoever we’re going to see, I request an interpreter and we went to the ER before, and of course, they didn’t have an interpreter so they use the computer to have an interpreter and the doctor kept on looking at the screen and I’m like, “He’s the patient.” She can hear. Look at him when you’re talking to him. That’s respectful. That was another argument.[ Laughs] But I didn’t care. Look at him. You’re talking to him. He’s the one that has the visit. She’s here to make sure that what you’re saying is relayed to him, but he’s the one that deserves the respect of you looking at him. Don’t tell her, “Oh, ask him.” “Just talk and she’ll say it. She’ll say it. Look him.” But you have to you have to train people.

LS

That’s right. That’s right. A lot of it is that people don’t know. They haven’t had experience of working with an interpreter but that doesn’t mean you can’t still be the one to teach them. We can understand people and still insist on what we need, and it isn’t, “Oh, they don’t know, therefore, I shouldn’t speak up.” They don’t know and speak up.

That’s incredible. All right. So we’re gonna wrap up this awesome episode of the All About Audiology Podcast with one last question for you. What advice would you give to parents out there and/or professionals who listen to the show?

JN

Parents, I would say, don’t get wrapped up in your kid having hearing loss. Get wrapped up in your kid in general. I see this—so much time being concerned about inattention to what I need to do to develop my kid to have speech and language that was totally consume me. I made so much of my life being a parent of a deaf child versus being the parent of a kid who happens to be deaf, which is crazy, because I always told them that they were amazing kids that happened to be deaf, but as parents, I’ve made my life being a parent of a deaf child, if that makes sense.

And when it comes to professionals, I think I would say to a professional, to make recommendations—well, to educate, and then follow and make recommendations based on the education following the [inaudible] your family. [Inaudible] The professionals have so much impression, and people will follow their lead so much and most professionals don’t know what it’s like to raise a child with a [inaudible]. So they don’t really have to think about the concerns that you’re thinking about—how is your child going to do advance class? How would they do taking the SATs? So you know, how they view their child is as a patient, and they have a responsibility to them as a patient in whichever arena of that healthcare cycle may be. But a parent is really having to look at the child holistically, and so follow—a course be the professional and educate so parents can make sound decisions, and then make recommendations based on the—following the lead the parents are [doing].

LS

Yeah, I love that. I like to think of it as a pie with lots of slices, and each professional or person that you interact with. It’s their slice, so you’re going to have the teacher and she’s focused on her educational goals, and you’re going to have the audiologist and they’re focusing on audition and life, and then you’re gonna have like their music teacher who maybe wants them to really excel at music, and then you have their coach who’s in their sport, and all of them are very devoted to your kid in that area for the time they spend with them, which is an hour a week or one appointment every six months or whatever they—or the teacher even many hours a day, but the only person who sees the whole pie [Laughs]—not to objectify children as food, but you know, I’m trying to make a metaphor here. Doesn’t always work out, my metaphors.

JN

No, it makes sense. Yeah, the person is the whole pie and the parent—the person that they want to save the whole pie—like everyone brings—somebody is bringing the sugars, somebody is bringing the butter, but I want to keep my whole pie. So I want the best sugar, I want the best egg, I want the best butter, I want the best whatever for my whole pie. It’s mine. [Laughs]

LS

Nice. Yes, yes. And you know if we’re going here, let’s keep going. I think you were mentioning that you maybe forgot some of the spices. Don’t forget to put in your nutmeg and don’t forget some of that cinnamon because you’re gonna have a good sweet potato pie but don’t forget to make it like you know with that real kick, the special magic touch of also remembering your kid is a whole pie. [Laughs]

That’s it, it’s over. This thing is over. You’re hilarious. So fun. Thank you so much, Jessica for joining today. Thank you all for listening. I’m Dr. Lilach Saperstein and this is the All About Audiology Podcast.

The post All About YOU: Raising two Deaf Children- Episode 83 appeared first on All About Audiology.