All about YOU: Genetic Hearing Loss Life Experience” – Episode 65 with Olivia Rains
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Instagram connected Dr. Lilach and this week’s guest, Olivia Rains. Olivia shares how her hearing loss has affected the quality of her life at all different stages. Listen in as Olivia provides an authentic view into her life living with her cookie-bite, mixed, hearing loss. She touches on topics including the importance of including the child in the process of their diagnosis, trauma that might stem from medical treatment, as well as the individuality of a case-by-case hearing loss.
3:00: Olivia creates artwork under her brand, Last Nerve Anatomy Art. Olivia is thankful that people have connected to her artwork and have expressed how her work has inspired them along their audiological journey.
7:00: Acting aloof and progressing differently than her twin sister, were among the signs that suggested that something was up with Olivia’s hearing. One of Olivia’s grade-school teacher’s voiced concern and helped bring in the intervention of a speech therapist to help her case.
12:00: A doctor once put tubes in one of Olivia’s ears without giving her any anesthesia. This traumatic experience resurfaced when future doctors evaluated her during medical interventions. It is important for doctors to face patients and walk their patients through the operation that they perform on patients, in a trauma-informed practice.
15:00: Piano lessons helped Olivia in ways that surpassed the reasoning behind why she was initially enrolled in music lessons. Every student is different and one needs to take a students’ frequencies and configurations into consideration to understand their hearing and speech development.
17:00: A cleft lip or cleft palate is often associated with ear infections. If your child has either issue, it is very important to be hyper-aware of their health and ensure your loved one receives continuous testing. Often parents may believe their child is whining too much or that they are only hearing what they want to hear- get their hearing tested!
26:00: Auditory processing is different from hearing loss. Rephrasing versus repeating is very important.
35:00: Real time captioning and sign language interpreters are accommodations that have helped Olivia. It is crucial to provide a child who has a hearing loss with accomodations to ensure that they can be a member of the hearing world.
42:00: Her mom once left Olivia crying in the car while she was complaining about pain. This experience added to Olivia’s trauma. It is important to talk through pain and not ignore it.
For more resources and research visit:
https://www.instagram.com/mama.hu.hears/?hl=en
Mentioned In this episode:
All About Advocacy Organizations – Episode 59 with Oren Dvoskin and Damien Kelman, Bekol
An upcoming episode with Juliana Pedri that focuses on Auditory Processing
Listen Next/Related Episodes
All About Supporting Your Child Unconditionally – Episode 66 – with Takniyan Debbie Dachi
Transcript:
“And I think that will really help people too. And I think that they will feel more empowered if they help the child to feel like they’re also in on it. Because I think for me, I felt like no one cares. I’m just sitting here and they’re talking about my ears, and they’re going to do stuff to my ears and I don’t have a choice. It felt very isolating and scary….” – Olivia Rains
Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and on this show, we talk about your experience, audiology and deaf and hard of hearing children. This probably turned some of your lives around. Definitely a lot of questions that come up. So that is what this podcast is about, how to manage that, how to deal with all of those questions and where to get support.
So, before we dive into today’s conversation with Olivia Rains, I am very excited to introduce her and for her to share her story and have tons of amazing advice for you, I am delighted to invite you to the H.E.A.R Retreat. This is a seven day FREE retreat, virtually. Unfortunately, we can’t all meet and give each other hugs. Also, it is an international thing so I guess it’s cool that we can do it online. You are invited to learn more and sign up at allaboutaudiology.com/retreat. And on this retreat, we’re going to meet every day on Zoom for an hour and have this kind of conversation that’s really experiential and talking about what you are going through, because your child is probably getting a lot of attention right now, appointments and therapy, paperwork. I hope they are because that’s awesome. They should get all that attention.
But what about YOU? What about YOUR experience? I’m talking to you, Moms. Dads are welcome too. We’re very open to anybody who wants to come. So, I’m very excited about that. That is happening soon. So, go check that out!!!
And without further ado:
Dr. Lilach Saperstein: “Welcome Olivia, how are you?”
Olivia Rains: “Hi! Thank you so much for having me. I’m great. And just happy to be here. And then also very much look forward to signing up for the retreat, too.”
LS: “Yes, it is going to be awesome. And I need to tell everyone that we found each other on Instagram. Instagram is like a delight. You literally can connect with anyone on any topic. Just be cool. Go into the DMs and be like, I like your art. Tell me more. Haha. So, that’s what happened.”
OR: “I was so happy about that because through my art page, my main focus of style is anatomy art. And that definitely stems from my past being in so many doctor offices because of my birth defects that caused my hearing loss and all my other stuff. And so, I found it very comforting to do anatomy art. I think there must be some soothing connection between seeing all the anatomy artwork in the actual offices that was like charts and, you know, pathology and stuff. I don’t know. It kind of gave me comfort.
So, I started posting more about my birth defects though, and my hearing loss for awareness, because I knew that some people were like, why are you doing anatomy art this way? And I wanted people to hopefully connect and I really hardly ever had anybody. And then of course you found me. I was so delighted. And also, I had one post. I did post a picture of one of my birth defects, which is my submucous cleft palate and my bifid uvula. And I wanted to bring awareness to that to people, but also, so they could feel free to contact me because I know there’s probably parents out there, right? And I actually had a couple of moms reach out to me and I was so happy about it. And they were very scared and you know, they were probably actually my age and I’m not afraid to say my age. I’m 43. I’ll be 44 next month. Ah, that’s so weird to say.
But so a lot of them are my age with little ones. And this one woman, her child was maybe two years old, maybe not even that who also had a submucous cleft palate. And I felt like I was talking to, almost like my mom. When she was dealing with this and she didn’t have anyone to reach out to, and she was scared and she only had doctors to really kind of tell her, ‘Oh, you need to do this and that, and this and that.’ And my mom’s like, ‘Oh my God, should I do that surgery? She’s so young. What if it’s not that bad? What if she doesn’t need the surgery?’ And all these questions.
Everyone has their own path and decisions. And it’s hard because I want to give my story and opinion without guiding someone else’s. But if I can tell them what I did and if for some reason, maybe it strikes something with them that they’re like, you know what, that’s me, that’s how I am. I’m probably going to do this then in that situation. I don’t want to guide their decision. But if I tell my story and it helps in some way to feel less alone then at least that’s something, you know?”
LS: “That is unbelievable. And actually, I knew right away, we were chatting back and forth that we have that kind of approach in common because as an audiologist, our training is you “know best” or you learned the evidence. So, now go tell people what to do. And sometimes that doesn’t hit right, where you say, no, I want to present the options and help the parents decide what’s right for them, their family and their child. So, it’s kind of always this line where, as an audiologist, I’m moving more towards the parent coaching and more towards, you know, this kind of stuff that I’m doing with the retreat, because I really, really agree with you that sharing your story and connecting with other people who have gone through or are going through the decisions you’re facing, that right there has so much value. So, I’m so, so excited that you’re going to be sharing your story and that you had that experience, you know. You open up about something and you don’t know who’s going to see it, who’s going to hear it.”
OR: “But you, as an audiologist, you guys are my saving place. If I do talk to someone, especially in my line of work, when I have clients and I talk to people in the deaf and hard of hearing world, they do come and ask me, ‘but what do I do about this? Or what is this like? What’s this symptom? What does that mean?’ And I’m like, ‘I can’t tell you, but I can tell you, you need to see an audiologist. Haha. So, that’s nice that I can always steer them back to you guys because that’s what you do. And I think that it’s awesome that you have married the two sides because a lot of times, some audiologists don’t do that. So, the fact that you actually have this big heart to connect those worlds is even brighter and more loving and amazing. I think that you go this extra mile to connect all of us. And I think that is very unique and special. I don’t see that a lot. And I actually have a lot of connections, a lot of audiologists here. So, I think that’s amazing.”
LS: “Thank you. I really feel like each person has their unique moment. And like some of my incredible colleagues, they have such depth of knowledge about their specific thing, like balance disorders. There are people who really know that well. And so, yeah, I’m glad that I’ve been able to kind of step into the place where it really feels like my heart is in it. I can do this work.
Well, I wanted to hear more about your story. Maybe start from when you were born. Just go right to the beginning. Haha.”
OR: “That sounds great. I can summarize it too. I am also a fraternal twin, so I have a twin sister. So, that kind of actually helped my mom a little bit because there was something to compare. So, it was like, oh, if one twin is doing this, the other one should also be doing this because the development should be equal if they’re both “normal”, which is the word that was used a lot back then. Of course, we don’t really say things like that any more. But now you look in the baby pictures and you can see it. But my mom said, ‘your neck, your head would always be resting on your shoulders. So, we thought something’s wrong with your neck for a long time’ for I don’t know, six months or something. So, it was little signs like this.
Now, this was in 77′, 78′. It was a long while back and we lived in a very rural town of like 800 people. So, we were kind of secluded and kind of isolated and didn’t have a lot of resources. And my parents were also pretty poor. And so, we didn’t have a lot of medical health that we should have had and support. And so, kind of, they were just winging it, really.
And basically it was like, when she would feed me, she said, ‘I would go to feed you and I couldn’t hold you the same way I held your sister and milk would just shoot out of your nose.’ And she said that that was kind of when she was like, what is that? My dad has also a partial cleft palate, but his is not a true split. And so, my mom said, ‘Oh my gosh.’ And she said, ‘I looked in your mouth and realized you have like similar to what your father has, except it’s more progressed. It actually was more split, except that I did have a little bit of tissue in between the bones. So, that’s when she said, ‘Oh gosh, I’m going to have to take her to ENTs and stuff.’ So, she did. And then they said, instantly, they were like pushing surgery. ‘She’s never going to be able to speak. She needs a surgery. We need to do surgery on her mouth. And my mom said, she just felt it in her gut, no, something doesn’t feel right.”
LS: “This is when you were a few months old? This is when this was all going on?”
OR: “Yeah. She said it was within the first year. So, it was kind of slow discovering the whole milk shooting out of my nose. She kind of just thought, well, maybe I’m just not holding her right. Or she’s gassy. It took her a while to figure all this out and little things like my sister was crawling and walking at a normal age and then I wasn’t. She said, ‘you didn’t even crawl it until you were like three.’ And then she also said how I just cried constantly pulling at my ear, which we know in our world, those are signs. But she had no clue.
And I know a lot of people don’t even realize too. Like 90% of kids are born that are deaf or hard of hearing to hearing parents. So, they have no idea. Right? So, she said the doctors just really pushed for surgery, but she’s like, ‘I want to wait. Let’s just see if there’s better options before we go all the way to surgery.’ Because I think she said in her mind, you’re just a little baby. What were they going to do to your mouth? You know? So, she said, ‘I just had a gut feeling. I said, no, I’m going to wait and let’s see what happens.’ Well, it didn’t seem to be a problem.
So, a few years go by. And then of course we go into grade school, but in second grade, a teacher approached her and said, ‘she’s not communicating with anyone. She seems aloof. Her speech doesn’t match what the other kids are. And we’re not sure what’s going on with her. Maybe she has a learning disability, but whatever’s going on, she’s not incorporating into the class.’ And then that was when my mom took me out and then they took me to a speech pathologist and that’s when, for the rest of my school years, I had speech therapy.”
LS: “I just want to make a point on that. You know, we’re blessing all of our colleagues right now in the different fields, everyone doing their thing. Those teachers, they are rock stars because that’s a very hard conversation to have. To go to a parent and say, ‘I’m seeing something, are you agreeing?’ And you don’t want to come off as judgey and you don’t want to be the mean teacher and to have that conversation and have it received, is also an art. And also the piece that you said, ‘Oh, she seems aloof. Like she doesn’t make friends.’ And some of the times, these kinds of symptoms look like a social thing, when actually, there’s a reason that you are not participating.
In another episode, we spoke to Damian and he was sharing his story that people said about him, that he was like a space cadet and he was always floating and he was in his own world. And that was just like who he was as a kid. And then only later on, oh, you had this hearing loss the whole time. So, different people show it in different ways. And if you have any concerns whatsoever, go get a test. Please, just find out.”
OR: “Absolutely. And I think that a lot of people nowadays will say, didn’t your school screen you? How did they not know? And it’s like, you would think that, but the thing is, they don’t realize too. There’s different systems to that. It depends on where you’re born. What are the resources around? There are also some types of screenings that are very general. So they’re not as in-depth as an audiology screening. It’s not going to be the same thing. And I have colleagues who are hard of hearing who said they even mimicked their way through their hearing tests and appeared to be more hearing than they were. And so, there’s all these different facets.
And it’s interesting. My mom put me in this speech therapy during grade school. I don’t have a lot of memory. I was just so young, but I also had a lot of bad experiences medically. At that point, I think they had me at like two years old. They put tubes in, my first set of tubes. And then from there out, it was just always speech therapy. And then more tubes. I had one experience, which was kind of traumatic. The only way I remember it was like, my normal doctor was not available. So, they had some other doctor that was standing in for him. But my mom was like, I didn’t know what to do. Back then, we just thought, well, this is a doctor, they know what they’re doing. So, I’ll just sit there. And he basically put tubes in without me being at all put under. I had no anesthetics at all. All I remember is him holding me down and having the forceps ready. I saw them coming behind him. I was five years old. I didn’t know. And he said, okay, don’t scream. And that’s all I remember is him putting the tube in. And I completely blacked out. I don’t remember even having the other ear done. I think I was just blacked out and it was just very painful. And so, I get a little jumpy when I have to go to my ear doctors.
And it’s funny because one of my last doctors actually here who is very gentle and very aware, very aware like you are about these different sides to everybody’s situation. And I remember I had already had a tympanoplasty on my left ear, like a couple of years prior, but I still needed help. I was going to get help from new hearing AIDS. And he came at me to just look. That’s all he had to do, was just to look in there. And I guess I flinched, I don’t even remember doing it. And he noticed it and he stopped. And he said, ‘did you have some bad experiences in the past with other ear doctors?’ And I said, ‘Yeah. You can tell?’ He said, ‘Did they not ever tell you when they were going to do stuff and they just kind of did it to you?’ And I said, ‘Yeah.’ So, he was like, ‘It’s okay. I’m going to tell you everything.’ And he was very aware. He also faced me. He knew to face me so I could see his face and see his mouth. It was awesome. So, it’s experiences like that that can heal a lot of the trauma from the past and having good experiences with new professionals out there now.
And so, I think now people are discovering this in research but my mom put me in piano lessons. At that point, my pure tone average was around 70 for both ears. I have a cookie bite loss. So, since it’s a mixed loss, mostly conductive because I have most of my losses because I have otitis media and osteosclerosis, so the tissue hardens and becomes brittle. And then when I had my last tympanoplasty, when I was at age 30, I asked the doctor, ‘Hey, when you’re in there, will you please confirm to me about my hearing bones, because a doctor I saw many years ago in Dallas says he thinks that they’re probably deformed or they didn’t form properly.’ Well, he said, ‘Okay. Yeah, sure. I’ll let you know.’
Well, he came after my surgery when I went in for my post-op, he said, ‘yeah, your malleus bones were not formed properly. They’re positioned to the wrong area.’ And I was like, ‘okay, that helps, make sense.’
So, my mom puts me in piano. I had to put my head a lot on the keys. I basically had to visually memorize what the teacher taught me because I didn’t hear the same way hearing people heard notes or sounds. And that paired with the speech therapy actually helped my speech and saved my speech because, I don’t think back then, my mom had a clue what that was about. But I had talked to other audiologists in my adult life and they’re like, wow, your mom did a very innovative thing without even realizing. Music, stimulating that same lobe of the brain that houses language and you’re keeping it stimulating and it’s going to help your speech. And that’s what helped your speech the most. And I said, I agree. It was pretty awesome.
And then I went to high school, still mainstreamed, still with the 70 hear tone average. It was very hard. I was struggling very hard in school. And I had my first tympanoplasty when I was like, I think it was about 15. It was 91′ or 92′. The doctor wanted to give me a cochlear implant. And I said, I didn’t understand. At that time we didn’t know much about them. They were just coming around here. And I was really scared. In my mind, I was this kid thinking, you want to put this thing in my head? I’m going to be a cyborg?
You know, I was a kid, I didn’t know. And this was forever ago, but what I find interesting is that, I understand from a perspective of profound hearing loss, that that might look like a candidate, but for me, since it’s mostly conductive, I think it would have been better for me to get a BAHA, but those didn’t even exist back then either. So, it’s pretty interesting. So I’m kind of glad I steered away from a lot of the bigger options. And instead he said, okay, well, I’ll try to do a tympanoplasty. And that’s when I had my first major (surgery), had the tympanoplasty in my right ear. And it only boosted me about 20 decibels of hearing, but it was still something.”
LS: “For people who are listening that are maybe not totally on with the terms. First, I want to mention about the idea that when a baby has a cleft lip or cleft palate to any degree, that is very much associated with also having ear infections, because of the whole ear, nose, throat connection, the eustachian tube that connects our middle ear to the back of our throat, and the back of the nose. And so, that whole area, the mucus and all that stuff, it just becomes one big cavity rather than distinct areas. And a major point of that is not to say, oh, it’s common. So, therefore, what are we going to do? Kind of pick your hands up, like the opposite. It’s commonly associated with, therefore, be even more mindful. Go even more often, you know, do that intervention as much as possible, what’s available, what’s appropriate. You know, because sometimes people are just like, well it’s associated and the end of the sentence is, therefore do more if you can.”
OR: “I’m so glad that you said that. See, and this was also such a learning process for my mom. Like looking back now when I do trainings and stuff from my job, I tell professionals that work with kids and stuff and also parents, to be on the lookout for that too, because yes, the ear infections that I had, I mean, they were diabolical. And I feel like even saying that word is an understatement. I can remember crying so hard from the pain. I mean, I was a little kid, so it’s not like I wanted to kill myself, but at the same time, I just remember literally wanting to just take my head off. It hurt so bad. And, I don’t think that the people around me and my family could really understand that. It got misinterpreted as like, I’m whining too much or I hear what I want to, or I have selective hearing, things like that. And that’s another thing too. It’s so invisible to people that don’t know about hearing loss.
And so, that was the other thing. My mom and other people said, oh, well, your grandmother is hard of hearing. And I’m like, but it’s not the same. And my loss is different. So, if someone knocks on my door, I won’t probably hear it cause it’s more mid to low range. And for me, most of my loss is in the mid to low range. So, males voices are very muffled, things like that lower tones. And these are the things I try to help people now to understand. So, like, they’ll be more patient with their kid because I’m like, I remember so many times. It depends on the situation too. What is the environment like in the room? Is it well lit? Is there lots of rugs and things to absorb sound and curtains? Or am I in an office building with terrible lighting and I can’t see someone’s face. These things all matter. And so, I know that confuses some parents, like if their child responds to something they say, but not others.
And I’m sure that’s where my mom was too. She was probably like so frustrated, but also confused. And I think it’s an instinct probably as a human to have this judgment, where we put things right where they’re supposed to be, because then we’re like, oh, that’s where that is. Instead of it being in five different places. With the kid with the hearing loss, you know, in your profession, that child, that one child can have like five different to ten different angles to their hearing loss. It depends on everything. Maybe they’re single-sided deaf. Maybe, they don’t have any birth defects. Maybe they lost their hearing from meningitis. There’s so many aspects.
The thing with conductive, or at least in my experience, I think it’s really helpful, if a parent has a child with a kid who has a conductive or mixed loss with some conductive issues, take it very serious with allergies and sinus. My sinus cavities are different and now I’m more aware of that. So, I get colds, well not colds. I get allergies very easily and can get sinus infections very easily. And so, any kind of like fluid backups, like my eustachian tubes are not working properly either. So, it’s like those things. Oh, it’s just something to look out for too. Like where they live. What’s the climate like? Allergy support can also help depending where they live.”
LS: “Oh, my gosh. I’m just sitting here nodding and nodding about everything you’re saying, because it’s so common to just say, oh, a deaf child or a hard of hearing child. And then like, you know what that means because you met one. No, there’s so many different kinds. The hearing loss can be different. Everything you just said. That was so, so, so important for people never to compare to other children in the class, other children in their community, even siblings who might even have the same reason for their hearing loss, but then have different frequencies or one ear or a different year. I’m so glad you brought that up.
And also about the configuration, which is something people don’t talk about a lot. We talk a lot about the level of the hearing loss, mild, moderate, moderately severe, severe profound. How loud do the sounds have to be before someone hears them? But the configuration about which frequencies. Is it the low pitch tones, like you said, men’s voices and like sounds of traffic and that kind of low, low register versus high pitch? Birds and people speaking very high, little kid voices or women. And so, if you have a cookie bite loss, then you’re missing all the middle, but you actually have some of the high frequency information, which is unusual for more, most common, high frequency hearing losses. So, people just say, oh, high frequency looks like that, but you actually have that. So, then that also for sure contributed to your amazing speech development because you have all those consonants, like the “Th”, the “F” that are all super high. The “S” sound. And so, like, someone could say, Oh, but you’re hard of hearing and you sound great.”
OR: “Oh yeah. Or normal. I used to get like, Oh, but you don’t look deaf. Oh, you seem normal. That’s not a compliment, hahaha, but that is true. But that’s also like that topic, like the autism topic to you is so another world. But I really hate to say just moms, cause that’s usually all I hear from. My dad, he kind of stepped back and let my mom take over, which is, I think typically what I see happens too. So, I know there are some dads involved, but a lot of moms that will approach me and like, you know, they’re scared and I don’t want them to be scared. I know for me, I just wanted to feel more included. My message to moms. It is still in my work now. I tell them like, you know, just include them when you go to the doctor.
Tell the doctor ahead of time, if it’s possible, or even in the meeting with the doctor, you want them to talk to your kid too if they’re old enough to understand. Because I always felt like kind of a lab rat and the doctor never explained to me what was happening. So, I had no idea. And then of course here he is giving my mom all this medical information and it’s just over her head. She doesn’t know anything about any of that. So, then there’s this complete break in the communication line. And then you don’t feel empowered because you have no idea of what’s going on. And I think the parents can feel more empowered if they understand it and maybe get involved in community things.
Here we have the Hearing Loss Association of America where there’s like chapters in different major cities and parents can get involved that way. And there’s so much information to talk to other parents. And I think that will really help people too. And I think that they will feel more empowered if they help the child to feel like they’re also in on it. Because I think for me, I felt like no one cares. I’m just sitting here and they’re talking about my ears and they’re going to do stuff to my ears and I don’t have a choice. It felt very isolating and scary. There is no question of asking you. It’s just like, you’re just there as this subject. And so, I know things now have changed a little bit with bedside manner, but there are still some doctors that I have come across that don’t have good bedside manner. So, I think if parents can control it in some way too, instead of the doctors talking to the mom.
I think if I give you this example, you’ll understand it. It’s kind of like when you have a sign language interpreter and the person who wants to speak to the deaf or hard of hearing person speaks to the interpreter instead of looking at the deaf person. But really what the deaf person wants is for them to talk to them. And then they’ll look at the interpreter. And so, it’s kind of that same dynamic or that analogy. It’s the same thing when a doctor would speak to my mom and not me, now, suddenly I don’t feel involved there and I’m not involved in the process, and yet, it’s my body.”
LS: “And it’s your experience and your experiences all important for you to share if it matches what everyone’s talking about.”
OR: “Yeah, exactly. That can be a huge empowering thing. And I know for me, my level of advocacy for myself would have been where I’m at now in my life, but like 30 years ago. And so it took me all of my adult life to get to this point. But I realized looking back, it was so simple to just have that support from my mom and have that advocacy support cause otherwise I was so isolated. And at one point I just remember, and I think it was in middle school, I would just sit in my room and cry. I used to literally pray to God, please just take the rest of my hearing. And I don’t have much left, just take the rest. And then my parents will send me to a deaf school where I’ll be understood and I can learn sign language.
And it was just, you know, that feeling of I can’t be a hearing person, but I’m not in the deaf world. I feel in between, a leg in both worlds. And I used to think that that had to matter too. And now I know it doesn’t and you can be in any of those. It just depends on where you’re at.
Sometimes, I’m little d “deaf” and I’m with my deaf friends and we’re signing. And then I’m with my hearings on other times. And there’s some of my friends I’ve known for years and they don’t even know any of this stuff about my past. Well, I can tell you and explain to you my entire situation, but you’d treat me the same any way. Pretty interesting.”
LS: “Well, now you can just send them this link, hahaha.”
We had on the show, actually, I think it’s coming up episode with Juliana who shared about her auditory processing disorder and her diagnosis. In fact, her parents had her diagnosed as a child and didn’t tell her all throughout her schooling. So, here she was experiencing all the things that were difficult without any understanding that it had this basis and it was diagnosed and she was getting services without knowing why she needed them.”
OR: “I had some clients when I was way, way back. I was doing contract work for the state, and I did assessments for deaf and hard of hearing where I would go and connect, whether it was like their phone or like their mobile phone, or devices at home, whatever, to help them hear better with whatever they had, a cochlear implant or hearing aids.
But some of the people I had, yeah, they had auditory processing. So, it wasn’t their ears. It’s how their brain did it. And it was so frustrating for them. And I felt so sorry, because I’m like, Oh my gosh, I know how frustrating that is because you’re trying to tell people and that’s the main part that would be very depressing for them. It’s like, no one believes me. They think I’m making this up. And I felt for them because I completely understand. Because even growing up like how I did, hard of hearing, it’s the same thing because people look and say, Oh, you look fine. You look normal, you don’t look like that or you seem fine. And it’s like, when I explain to people about a hard of hearing lifestyle of bluffing and like reading lips and trying to get by and like thinking you’ve heard something and laughing, but really you probably were meant to say no or something. Like, there are little things like that.
And so when I explain that to a lot of hearing people or parents and stuff that are like dealing with kids, either that are deaf or hard of hearing and like auditory processing, then they’re like, Oh my gosh. Yeah, they do seem like that. Oh, they do that. Yeah. My kid does that.
For example, for a kid who has sensorineural loss, sitting at a dinner table, eating dinner with the family is very hard, especially if people are talking over each other. He can’t keep up. For a deaf or hard of hearing kid, he just can’t. It’s too much. For me, it was the same, except it was when I was eating, because the sound would go through my bone and all I can hear is my crunching and eating and chewing. Now, I’m deaf. I’m looking at my family talking and I can’t understand anything they’re saying. So, I would have to sit there and not eat and try to keep up and pay attention. And my mom would get mad at me and say, you need to finish your dinner. I’m not joking. I would get in trouble and the lights would get turned out on me and I’d have to sit at the dinner table until I finished my dinner. And she didn’t understand that I wasn’t eating because I had to wait so I could hear y’all and keep up with you because I want to feel like I’m in the family.
So, it was things like that, over time it just wears you down and can be a lot.”
LS: “This is why I’m so, so grateful that you’re sharing this as an adult, reflecting back at these memories because this is, I feel exactly the piece of the conversation that we need to be having and what this whole entire podcast and the retreat, everything is about this. How to have your child feel like they’re part of the family and how to have a relationship with them and connect with them with all these things that are in play. You know, we want to call them barriers, you want to call them blocks? I don’t know. They’re just what is. That’s what’s going on. Every child has what they have.”
OR: “Yeah. And technology’s awesome. And I’ve devoted my career and path in life to deaf and hard of hearing technology and resources. And that is great. Technology is great, but at the end of the day, it’s what you just said. It’s the communication, the connection between the support and the deaf and hard of hearing person. And it’s really, basically down to the the guts of our hearts as we are as a human being and wanting. Not just deaf and hard of hearing people, everybody wants to connect. Everybody wants to feel loved and accepted no matter what. Now you take on top of that, this person who is deaf and hard of hearing, and you have that, like you said, that barrier challenge or whatever, and so you have to work harder. We don’t think that way. Our brains don’t really think that way, in a way. We love someone or we hang out with them, we socialize, but then we throw in something like being deaf or hard of hearing, and then you have to actually think a further step. You have to take an extra step to pause and talk once at a time or rephrase something you said that they’re not hearing.
I also have talked to some of the people in my trainings where I explained to them, like you were describing the cookie bite or like the audiogram, like where the letters are actually in that speech banana. Like where they are, you can literally pinpoint where people hear vowels and consonants and things. When I tell people that, they’re amazed, because then it registers in their brain like, okay, now it makes sense when I asked them if they want to go to the store or they’ll say things with certain letters. And I’m like, ‘right. So, just rephrase it.’ And then you give them an opportunity to catch different other letters and other sounds. So, then they’re like, Oh my gosh, I never thought of that. And you know, if you sit there and repeat the same thing and they’re not getting it, but then you just yell it at them. Now you’ve opening up this whole other emotional side to it. So, I usually tell people you give them empowerment by rephrasing and connecting those communication strategies.
But that’s what the heart of it is. I think that’s the core of all of it. Audiologists, speech therapists and even the ENTs and the parents and the school system, everybody makes a part of that team and that heart for that deaf or hard of hearing child for sure.”
LS: “Exactly on rephrasing rather than repeating and why that’s so helpful. I just want to go back to what you said before. You mentioned about feeling like you’re in between. And I recommend that everybody follow Dr. Michelle Hu, mama.hu.hears on Instagram. And she also talks about this in-betweener. She did a video with a bunch of people who kind of say, I’m an in-betweener, and that’s an identity that we have to take away this kind of black and white, in or out. Because it’s just not true for the majority of people. Most people don’t fit very neatly into one or the other.
And another thing you said, which was so, so impactful was about the isolation. Recently, there was the EHDI conference, the eddy conference and they were talking about how for deaf and hard of hearing children, the least restrictive environment, which is like the legal ease for special needs placements, educational placements for deaf children, actually gives them more isolation because were they put into a “more restrictive environment” in the case of a deaf school, they would actually have more peers and better access to communication. This whole conversation that you’re bringing up. So, I’m curious if you can share a little about when you were exposed to sign language and how that part of your life is integrated into different parts?”
OR: “Oh, yeah. As soon as I got out of high school which I barely did, and actually based on what you were just saying, I was thinking, Oh my gosh, I remember high school was terrible. I actually ended up having to take courses over and over because I kept failing and I just barely graduated.
I moved to Austin and I actually started to take a class where I grew up in sign language. And then I knew as soon as I moved to Austin, there’s a huge deaf community here. I’m going to go to the Texas School for the Deaf and take classes. So, that’s what I did. Also at the time, I only had one of my ears done on surgery and it improved it only slightly on my hearing. So, the doctors told me with my conditions, ‘Oh, you’re going to be completely deaf cause the tissue was just going to keep hardening. You can’t keep having these surgeries and graphs. It’s not going to last forever. So, you should just learn sign language.’
I was fine with that. I actually felt more comfortable in my deaf world than how I grew up. For me, it wasn’t a hearing loss. It was like, Oh, I can be who I am. Okay, cool. And so, when I started learning sign language, I felt right at home. It instantly empowered me and made me feel like a person. I felt like a person and I just dove into it.
I have been off and on for like four years. I had to get back into it after a couple of years. And then I got to the level where I was literally interpreting level, but I knew I wasn’t going to be an interpreter. So, I was like, Oh, that’s cool. I basically took it as far as I could. I was very conversational. And then I started working in the deaf and hard of hearing community. So, it just really helped me bridge all sides.
And I even had an experience the summer before the pandemic started and I had jury duty. I always get really nervous in situations like this because I know hearing aids are great, but in a situation of distance and if the person’s turning and not looking, it’s also hard. So, I always ask for them to provide either real-time captioning or a sign language interpreter. And I know not everyone has that option. I know some hard of hearing people don’t learn sign language, and they rely only on written or some type of captioning or whatever or devices. So, I know that’s hard. I feel blessed that I can use also the sign language. Actually interpreters, I said, you can provide me cards or you can provide me interpreters. And then I show up, there’s interpreters. I’m like, it’s cool with me. But when there was a point when they were asking us questions and stuff, to kind of decide who they were going to ultimately choose, I realized if I speak, even though I have interpreters, if I speak right now, they’re going to be confused about what am I? And so, there is this whole other side to it too, but I usually don’t take it too personal. But sometimes in situations like that, if I’m around other people I don’t know, I just won’t use my voice because I know it’s confusing.
But I didn’t care because sign language for me was a life raft. It really was a life raft for me because at the time I didn’t know about other resources like captioning and this was in 1999 as well when I had first moved to Austin to do that. I didn’t know about all these other resources and they really weren’t available at that time.
And so, I feel like you were saying about the lady, about the deaf and hard of hearing world, being in all of those, I feel like when I talk to parents now, they’re like, ‘well, should we put my kid in the deaf school? Should they learn sign language?’ I’m like, ‘why not all of it? It doesn’t have to be one way and it’s going to change as they grow up.’ Because for me, my needs changed as I grew up. So, it just depends. I very much advise to be like the ocean and just move with the waves because that’s a kid anyway. A kid growing up anyway, it’s going to be that way. But for the accommodation side of it, see what they like. Just like you would ask a deaf or hard of hearing person now for accommodations or what do you like, what do you prefer? Do you prefer that I write down something I say, or do you prefer I sign to you or do you prefer captioning? Like it’s no different. And I feel like when you tell people that, you give them tools to feel like, Oh, I have all these options. It can be very liberating to have that. But that’s kind of my sign language pass. I can’t imagine not having it in my life.”
LS: “Wow, I’m really glad you shared that. And again, just for our listeners, people who really are with us on all the episodes, you know that other guests have shared that they had no access to that and no interest in that. And they really are completely reliant on their technology and love that they are able to access their hearing world to speak with all their hearing family members and have a job in that way with accommodations for that. And that’s wonderful for them. Some people are like, Oh, I’m only a pro sign language professional for everybody and other people are like, no, that’s not the way to go. Who gets to decide what’s right for everybody? Not everybody needs the same things.
Okay. I’m getting a little ranty there. I need to calm down.”
OR: “No, I’m so glad that you say that. It’s so good for people to think that way, because you know, you’re being inclusive to everybody and access, it’s equal access for all sides. And that’s what’s hard too. I understand. Like there is a little bit of a controversial line between culturally deaf and everyone else. And I get that. Like, I really get it because I feel, because the way I grew up, I am very protective of my being deaf or have my past being deaf. And now I’m hard of hearing or whatever, how it’s labeled. And it’s like, I get that. But that is its own world too. I understand that. And respect that. So, I can kind of see both sides to like why maybe someone in some culture of the deaf world might be like, Oh, you’re not as deaf as me or you’re not in my, this is my world. You know, my family is all deaf too. And so, you can’t understand and no, I can’t. I agree.
But I don’t think that should limit people to feel scared, like you said. If that works for them, they want to have some sign language and use devices or one or the other, I don’t see anything wrong with that. I wish someone had told me 20 years ago, don’t worry about the labels. Don’t worry about that. You just worry about what works for you and makes you feel better. And that’s all that matters. So if what you need is to learn a little sign, but you really want to focus using your cochlear implant or your FM systems or whatever the devices you are using, or even looping systems like do it, or do all of them. And then maybe in some environments, you only use this system and maybe in this other one, you only use that. Don’t worry about what other people think. I think it’s such a pressure. I feel like there’s like a guilt with deaf and hard of hearing kids. Like they have this pressure to make their parents proud.
I think it’s not their fault. It’s just this feeling of you want your parents to be proud. So, if they’re hearing and you’re not, you feel like I’m going to do what I can to make them proud. So, I’m going to be as hearing as possible. And I think maybe if parents see that and catch that maybe let them know. Tell the kid, ‘Hey, you know what, if you don’t feel that way, it’s okay. You can do this thing or you can use that kind of accommodation. I just want you to feel like you. Because the way I think about it as, I never felt like I was myself, so it took me till I got to my adult years to feel like I even knew who I was because I had all those years of trying to be someone else for everyone else instead.”
LS: “You know what else stuck out to me when you said that it was so natural. And not that it didn’t take time and effort to learn, but a much less effortful kind of communication and having access to a visual language for deaf and hard of hearing children is more accessible just on the face of it. You’re going to have the incidental learning in that way.
So, I hope that people will be open to looking at the resources and then make the decision to them instead of just kind of like putting these blocks. Maybe professionals are the ones who are telling them, no, don’t even look over there. Don’t even go to that event. Don’t even look on that website.
Go look, read, find out, talk to people, listen to podcasts, and then you have the information to make the decisions from there.
I actually really, really want to talk about one other very powerful thing that you brought up, which is about trauma and about being a trauma informed provider, you know, from the provider side, but also a trauma informed parent. And I think that in general, just personally, on my life’s journey, understanding this whole, like paradigm of how things happened in the past, affect you in the present and make you anxious about things in the future. Like all of that is connected. Understanding how very powerful it is that if you had an experience at age five and that affects you at age 35 in a doctor’s office. Those two things are happening simultaneously in life. Like in your mind and your body. It’s not separated by time, or, you know, it could be a different part of the world. It’s still right there. And that that doctor was sensitive to that. Like that story, I was getting very emotional about that when you shared that.
And I hope that people take from this, you know, maybe it’s like more buzzwordy these days. Everyone’s kind of like talking about this is traumatic and trauma, trauma, whatever, like maybe not really getting to the core of it, but many times it can be really valuable to stop and say what’s happening here and is this too much because really that’s what trauma is that it’s just too much. It’s overwhelming. The body can’t handle it. It’s different for different people. It’s not like one thing someone can be fine from, and another person, it can be traumatic for them. It’s so personal and traumas build on each other too. Like people who have previous trauma are more susceptible to be traumatized again in the future.”
OR: “Absolutely. Yes. I actually do a training on that mental health and hearing loss and connecting the bridges because I think unfortunately, as a kid, when I look back, at least in my situation, I can understand that my mom probably saw it as I was just being a very dramatic child and I was just being very sensitive and dramatic. But the pain was real and I definitely was not creating drama to be this like victimized child to get attention. And I think, unfortunately, I see that a lot happening with kids that are dealing with these issues that maybe they’re acting out because they want attention. And I can guarantee the pain was absolutely real and I felt like no one got that. And I couldn’t even hold back crying.
One time my mom made me stay in the car. We came back from a doctor appointment. I don’t remember what happened. I just remember I was always there cause I always had infections. It was constantly, like blood was coming out of my ear. There was always something and we came back. I think I was eight or nine and we’re sitting in the car. I could not stop crying. The pain was so intense and the drive back was 20 miles. I’m still crying. We’re about to go in the house. She says, no, you’re going to sit in the car until you stop crying. You’re too old to be crying. You’re a big girl now. And she’s like, you can come in when you stop crying. Well, I sat in that car for probably another half hour before I could actually force myself to just stop crying. And like you said, even something like that is traumatic because it’s like, you’re learning to disassociate the pain in it.
And that’s connected to so many emotional things too and compiles. And you know, like you said, then 30 years later, a doctor comes at you and you’re like flinching, you know, and that’s real. That’s basically PTSD type stuff. I really hope a lot of parents will try to be patient. I know it’s so hard because, especially if they’re having a lot of issues with infections and things, it’s going to be all the time. Because the kids are also growing, the things that are developing can change and sometimes kids just get tubes and then they’re fine and that’s fine too. But when they do have that pain in the ears, PLEASE BE PATIENT and hold on and just believe them. That is my begging request. JUST BELIEVE THEM.”
LS: “And I was also thinking about how many parents really worry. It’s very, very valid to worry about your child needing anesthesia to get tubes. Nobody wants their child to have to go through that. But thankfully we have that so that you don’t have to experience a very, very painful thing. There are ways that people do it without anesthesia. So, that’s just one thing to put out there.
And I also just want to be sure that no one is taking my words and saying, Oh, we should just cuddle everyone and everything like bubble wrap your child so they never have a negative emotion. The opposite, like things are going to be hard. Things are going to be bad, like hi, life. Okay. But we can be more mindful that we can give the tools and the processing, like if something bad happens, let’s talk about it. Let’s see how did that make you feel. Opening some of that kind of emotional space, not only for your kids, but hey, for yourself and that’s a big, big, big lesson.”
OR: “It is a blessing and it’s a gift to the child. Absolutely a gift. If my mom had ever done that, I can’t even imagine how much that would have helped just to be able to say what I’m feeling and how it hurts just to be heard, literally. I mean, that sounds metaphorically funny, but like, just to be heard, that could’ve really helped me emotionally.”
LS: “Communities being maybe more welcoming or less welcoming, that also in a very big way, stems from trauma and intergenerational trauma of what happened to deaf communities that were excluded from everything, went and did their own thing to protect themselves and help one another. And then it’s like, well, you kicked us out and now you want to be in. There’s a lot there that goes back generations, racism fits in as well. I recently saw a thread on Twitter where a person said that they kept getting media requests about black ASL because they are black and they’re deaf and they use ASL. But they were like, stop coming to me because I learned ASL as an adult. You need to be going to the people who kept that tradition and that was their generational gift of keeping this language alive because they had to. And so, just because I’m the person who is saying I’m black and I don’t use ASL, I’m not the person for this story.
So, I’m just constantly trying to learn and listen that every person, every community, every experience, we have to have like a lot of patients, a lot of understanding, and it always starts with you. The more you can hear your own self and like, it feels like you’ve done a lot of processing and to be able to talk about it with so much kindness, even to yourself and to your mom and what went on there. I think that’s really, really powerful. I’m so grateful you shared it all with us.
So, last words, let me know what do you want everyone to know in case they want to take away if they haven’t gotten one yet or seven? Hahaha.”
OR: “Oh my gosh. Yeah. I think absolutely the takeaway would be kind of the highlights throughout the whole talk we’ve had is those bridges, those communication bridges and keeping those open because technology is great. But that’s not going to create love and acceptance. And what will be the best way is to team up and create that support system with your audiologists, speech therapist, if that’s needed, the school and the parents. Be connected and have that support. Find it wherever you can for the child and and talk to them, you know. They’re your kid. They also want to know what’s happening to them.
I think giving them the power to understand what’s happening to them will help you feel more empowered as a parent. And if you just continue to do that and just remember to be those ocean waves and, you know, the tide is going to keep changing constantly. So, just be ready to float it.”
LS: “Tell us actually what you do now. What is your position? Because we didn’t actually tell them. I know but they don’t know.”
OR: “I’m currently working for health and human services in the state of Texas. I’m in our training department. So, I provide training for the state. We do have out-of-state people sometimes that come in, but it’s basically localized to be just for the state of Texas. I provide all the training and we cover everything, all the kind of technology and resources, but also communication, mental health. And we’re also looking into even branching out for domestic violence, people who are deaf or hard of hearing with domestic violence, and just trying to cover all that ground. So, I do trainings and put together trainings and outreach for that. And I absolutely love it. It’s definitely the love of my life for sure, is being able to do that and connect with people just like you. This is amazing. I really am so grateful and blessed that you found me and that we connected and I’m really looking forward to that retreat.”
LS: “Awesome. Okay. So, everybody go sign up for the retreat and come and join us because we are going to talk more about this, about advocating, about connecting, about relationships. And like you said, love. That’s what it’s all about. Oh my God. Thank you so, so much. I really appreciate you, Olivia.”
Thank you to all of our listeners. You can sign up for that retreat at allaboutaudiology.com/retreat. And you will also have a full transcript of today’s conversation and all previous episodes at allaboutaudiology.com.
I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.
