The Ups and Downs of Tara’s Communication Journey – Episode 85
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Today on the All About Audiology Podcast, Dr. Saperstein speaks with Tara Marie from We Can Sign. Tara shares her story with different educational settings. When she attended a Deaf School, she felt she was able to finally flourish in an environment that felt right for her. In this academic setting, Tara was able to access sports, participate in tournaments, travel, and even become the student body president during her senior year. She has been teaching sign language for roughly 20 years, and holds online educational sessions. Tune into the powerful story and inspiring perspective that Tara brings to the table all from her own life story.
This week on the All About Audiology podcast:
2:30 – Individuals with hearing loss can be successful; specialists should not undermine the potential of their patients
7:30 – To disclose or not to disclose one’s hearing loss is up to each individual. It is important to balance the pros and cons depending on the situation one finds themself in
12:30 – Children who are hard of hearing are diminished when the adults in their life try to make them function, look, and act as normal as possible
15:00 – If that child feels positive about their future, if they feel good about themselves, if they have support from their peers and adults, they will be much better off.
16:00 – Tara finds that spending time with her friends who also have hearing loss, fuels her.
19:00 – Tara says that since children with hearing loss do not have 100% access to hearing, relaying on both a CI and ASL gives a child holistic access to communication.
26:00 – Going from knowing what hearing should sound like and then transferring to hearing sound through a cochlear implant, may not initially be a positive experience
32:00- If the batteries of a CI die, Tara finds that it has always been helpful to have sign language in her back pocket in order to shift as per needed.
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)
https://www.wecansign.com/with-tara.html
https://www.facebook.com/signingforeveryone/
https://www.instagram.com/wecansign/
https://www.wecansign.com/contact.html
Mentioned in this episode:
-Brene Brown
-Idaho Educational Services for the Dead and the Blind
Listen Next/Related Episodes
–All About Believing in Your Child- Episode 51 with Chaya Klughaupt
Transcript:
[DR. LILACH SAPERSTEIN]
Welcome back to the All About Audiology Podcast. I’m your host, Dr. Lilach Saperstein. I’m an audiologist and a parenting coach focusing on the relationship and the connections that we have with those amazing and important children in our lives that happen to also be hard of hearing or deaf, and so, we are really excited to welcome you to this episode today.
And we’re going to be speaking with Tara Marie from ASL Expressions, and we’re going to be talking about how using American Sign Language or any sign language can be a really huge and important part of your journey. So welcome, Tara. Thank you for coming on the show.
[TARA MARIE]
Thank you. Thank you. Yeah, I appreciate it. I am doing very well. Thank you. The sun is out. Spring is starting to peak up.
[LS]
We all need a little bit of falling out for sure. We’re done with this winter. I’d love to hear more about your journey, your background, and I know we have a lot of parents who are listening that might really feel overwhelmed and scared and nervous, and there’s so much information on the internet. Everyone has so many opinions. So where did you come into all of this?
[TM]
When I was about three, my mom started to notice that I was missing things that I had heard before but wasn’t responding to, and so she took me to our pediatrician and said, “I think she might be losing her hearing.” So he said, “Oh, let me talk with her,” and so, he had me come up and we had a conversation and I was very chatty. I was not shy, and just very engaged. And obviously, we were in a one-on-one situation so I did just fine, and the doctor looked at my mom and he just laughed, and he said, “She does not have a hearing loss.” He said, “She has selective hearing or mother deafness. So basically, she’s ignoring you.”
[LS]
The amount that my eyes are rolling. They cannot go any higher.
[TM]
I know. It’s crazy, and it’s funny because that happened a couple more times. She finally went to a different doctor—somebody that was a specialist and they found easily that I did indeed have a hearing loss, and from the testing, they found that it would most likely be a very progressive loss and that I would eventually lose all of my hearing. So my mom’s—she starts getting emotional. Tears start rolling, and the doctor—he pats her on the back and he says, “It’s okay, Janet. I know this is devastating news. I’m going to be honest with you. It’s very likely she probably will not graduate from high school, but she’s a cute little thing and she’ll be okay, and just do the best that you can,” and my mother—those tears stopped immediately and her emotion changed to anger, and she says, “You cannot tell me that this bright little girl is not going to graduate from high school, just because she loses her hearing,” and that was it. That was unacceptable to her, and I am so thankful that it was unacceptable to her. Really.
I was the oldest of six children, but it was so important to my parents that my hearing loss did not prevent me from access to the world. Something else that the doctor told my parents—I know that it’s an opinion, that’s widely circulated, but I disagree with it—but the doctor told my parents, “Don’t sign with her. If you sign with her, she’ll stop talking.”
I already had excellent speech, but they suggested that by adding sign language, that I would stopped talking, but also he told her that I would eventually be completely deaf, and this was before cochlear implants were even a thing. So it was kind of interesting. And with that prediction, it’s kind of baffling to think, well, what was he expecting when I reached that point where I could no longer hear anything?
So, I didn’t learn sign language as a child, and it wasn’t until middle school that that got to be a problem. It was in middle school that my hearing just tanked—just very aggressively. Those were really rough times, even through adulthood, when I would drive past that middle school that I attended at that time in my life, I would still get a little bit of PTSD. It was a very traumatic time for me, and that was before masks. As a matter of fact, one of my children, I have two children that are hard of hearing. I had to pull him out of school and homeschool him this year because he’s not deaf enough to really use a sign language interpreter cause he can still hear the English at the same time, but he can’t hear well enough without reading lips, so he was so lost.
So anyways, I can’t even imagine had there been masks back then—how much more difficult it would have been, but I mean, I would come home from school daily, just crying, just in tears. It was such a miserable time for me, and so finally, my parents decided to check into an option that they had been resisting for a long time, and that was the residential deaf school here in Idaho.
It’s in a very small town. There’s very little industry other than farming out there. So if a parent had a deaf child and wanted to move near the deaf school so that their child could be a day student, it would be very difficult for them to find work. The location is not ideal, so I would be sent away to school and I would live there during the week and come home on the weekends and holidays and summers, so that was very much a last resort for my parents, but we decided to go visit and just check out that option because we were really literally out of options there, and I needed to learn sign—like immediately.
[LS]
Can I ask you a question about your experience and not to poke at the pain because it’s so real—we talk about this a lot on the show that the things that happened to you in the past live with you. It’s not finished and gone. It really continues to affect you, and what I want to know is if you can pinpoint—was it more on the academic side, more on the social, the exhaustion, or was it everything all at once—not being able to cope at that time? And the reason I’m asking you is for the parents of school-aged children. When they see their children in that distress—to really get a sense of what’s going on for them.
[TM]
That is an excellent question. Thank you.
I would probably put social at the top. I was struggling academically, but social. I was not even fully aware of what I was missing academically and didn’t really care because the [inaudible] of my day was how to function in a world that I had no access to. So, it was really social.
I would wear my hair down. I always kept my hair long and I would wear it down over my ears. I would strategically position my hair so that my hearing aids would not accidentally reveal themselves to anyone. I did not want anyone to know that I couldn’t hear. I preferred that people think I was a snot—preferably that over them, knowing she wears hearing aid. Her ears don’t work right? In my mind, I had imagined what people would say about me if they knew that I couldn’t hear.
[LS]
Do you think you were quote on quote fooling anyone?
[TM]
No. I mean, maybe some people, because deafness it’s not a visible disability, especially if you can’t see a contraption on someone’s ears. So, yeah, I’m sure I follow people that didn’t know me and hadn’t met me, but anyone that had met me and tried to converse with me—if there was any background noise, or if they didn’t enunciate just very, very clearly, it would be obvious that something was off—that I wasn’t able to hear.
[LS]
Sure. Because people talk about that a lot—to disclose or not to disclose in social settings, even in job interviews, as adults. My advice to my patients is always, “Listen, they’re going to know something. So either they’re going to know that you aren’t paying attention, are rude, are out of it are spacing out—whatever the perception is going to be or you could just tell them right off the bat and then they’ll help you with the access to it,” I mean, at least they should, “and if they don’t and maybe you don’t want that job.”
[TM]
Exactly, and I don’t know where that came from, where that shame of hearing loss came from. And honestly saying that out loud, it kind of makes me want to dig and figure out where did that come from? I don’t know. And my family was wonderful to me. It wasn’t like I was mistreated at home. I was left out of situations. They tried to include me, but I mean, nobody could fix it for me. Nobody. So they did the best they could, so I don’t know where that intense shame came from.
[LS]
I’m going to put it out there. That middle school is a difficult time for everybody—figuring out their identity and who they want to be, and they want to fit in.
[TM]
That’s a tough age already. Put in the hearing loss and nobody that age wants to be different or strange or have something quote quote wrong with them. So it was very, very, very challenging. Yeah. It was a very, very miserable time in my life. And,, I appreciate that my parents wanted to make it better for me, and they were willing to look for other options—that they were willing to see what else we could do to make my education experience better and my social experience better.
So, we went to visit the deaf school. And we arrived at about noon and all of the kids in the school were sitting around tables in the cafeteria, and I will never, ever, ever forget the feeling that washed over me. When I looked around the room and saw a room full of people, just like me, people wearing hearing proudly with brightly colored ear molds.
No one was trying to hide them. People were signing, they were laughing. It was just completely normal in a different way, and I was just frozen, just stunned. And I turned to my parents and said, “I need to find a bathroom. I need to go to the bathroom.” They’re like, “What? Now?” But I didn’t really need to go to the bathroom. I needed a mirror because I wanted to put my hair up in a ponytail and make sure that it looked just right so that I could go back out into that cafeteria and let everybody know, “Hey, look, I’m just like you.”
[LS]
What a story.
[TM]
A life changing moment for me. Like, literally. I can’t even explain the feeling of being connected to people that understand, that have walked that path in anything, not just hearing loss.
When I walked out there with my hair up and my hearing aid showing, my parents were like, “That’s it.” That made the choice very, very obvious, but we agreed, “Okay, I’ll go for one year and learn sign language really quickly.”
The plan was I would come back and go to the public school with an interpreter. I went my freshman year. That’s when I started and I graduated there. I didn’t come back home after one year. How could I? I had access to sports. I was able to become the student body president [on] my senior year. I was able to go on trips and tournaments. Everywhere I went I could communicate. Everywhere I went, I had asked so I was not about to give that up and go back to public school. It just wasn’t for me at that time.
[LS]
You brought up shame – that feeling that so many of us can relate to, and the big stigma around disabilities, specifically hearing loss. Brene Brown talks about shame–very, very beautiful speaker. She said about how the opposite of belonging, which is what you’re describing this beautiful sense of home, of being among people who understand you and you can understand them, you have access—so the opposite of belonging is fitting in because fitting in is everyone’s the same and no one has identity, and no one sees you as yourself, but belonging and community is you’re still an individual, but you’re Important and your strengths are valued and you have support for your weaknesses if you want to use the word or places where you need support, we prop each other up. [Laughs] I’m feeling your story. I’m with you.
[TM]
Yeah. It was such a crazy time.
Those were such happy years for me. I don’t assume that that’s perfect for everyone. Parents of children with hearing loss—the best thing that they can hear and understand is that there isn’t a one size fits all approach. There isn’t. [It’s important] to really be in tune and intuitive to your child’s needs and the goal of their happiness and wellbeing being at the top. If they are in that place, then all of the other things will fall in line but when you have a child that is miserable and feels cut off from the world around them, that feels ashamed, that feels that will prevent them. It doesn’t matter how smart they get from whatever method you use educationally, starting with the heart and a sense of belonging and ability to access—if you have that in place solid, everything else from how I see it, will work itself out. It will be easier to find the ways that support that child and be open to whatever that may be. It may not be what you want it to be. And I know that it can be frightening for a parent. Anytime you have a child, that’s going to be different in any way. Our first instinct is fear. We don’t want them to be bullied. We don’t want them to be ostracized or left out. We don’t want them to not have every opportunity to live their best life, and so there’s that fear and so we automatically think that the solution is to make them as normal as possible but we miss something along the way when we do that, when the goal is to make them function and look, and act as normal as possible—even though the intention is good, we’re trying to protect them and give them opportunities for their best life but something really big and important is missed.
[LS]
We talk about the goals—the IEP goals, from the speech therapist, from the teachers and how those goals are very important, and we want to have professionals in our lives helping us progress and making us focus on the areas we can strengthen, but you don’t ever see a goal of my child should feel confident, capable, that they could do things, that they could make friends, that their contribution is important—maybe you do see some of those pragmatic goals, but in a sense, these are the things that are beyond their service goals that you really have to change everything around the environment and the priorities—so powerful.
[TM]
Very true. Yeah, and it’s hard because most of our meetings and our help—our intervention is really focused on academics and that’s put before the mental wellbeing of the individual, and I think that that’s kind of where we get mixed up. I think that’s kind of where we need to look more into that and figure out ways to make that the priority because everything else will be much easier. All the other barriers we’ll be able to work through. If that child feels positive about their future, if they feel good about themselves, if they have peer support and adults too—adult role models that show them, “Oh, I can do things. I have every ability to reach my dreams.” If you instill in them that hope, they’ll be motivated to break down those barriers. They’ll be an active participant in their success in life. They’ll be motivated. So, I carry that still. Even though I can speak, and I now have cochlear implants—I would love to talk a little bit about those as well. But it is still such a big part of my life and having the deaf community in my life—when I get together with my deaf friends, it’s almost like I’m getting filled up with gas. It’s almost like a refueling cause if you connect with others that understand this path, this life experience and you relate, it’s kind of like a fueling, and those conversations are effortless. I don’t have to be in my mind grasping puzzle pieces and trying to fill in the blanks, the missing information—my brain can rest in a social situation. That is very, very significant and very powerful, and very helpful. For me, it’s allowed me to comfortably and confidently navigate both worlds in a healthy way, because I have support on both sides, so that has been very helpful for me, and I know that there is still this idea that sign language can hold people back with hearing loss, and I would like to submit my opinion that having second or third languages, knowing multiple languages has been proven to be very, very beneficial to people and the development of their brain. So, why wouldn’t we want a deaf child to have access to more than one language? Maybe for a while, they’ll prefer one over the other, especially with hearing loss, cause the signing is easier for them. They have more access but they’ll have to navigate in the hearing world. So of course, with the competence and language skills developed, they will be able to navigate and they will be able to incorporate both languages and maybe even more than two languages into their experience.
[LS]
A language is an asset. Absolutely. That’s what my high school Spanish teacher would tell us all the time. When I took Spanish class in high school, she said, “Languages is an asset. You don’t know what it brings for you, even in the future,” and then there’s this big misconception in this conversation that it’s either/or. I mean, please, why can’t it be both? And it’s interesting, right? Because the people who say it’s either/or are generally people who would prefer that the child would be oral—auditory-oral approach, but people who are huge advocates for sign language are advocates for bilingual, bicultural, like do everything as much as you can, as much access and support each other. I don’t know that there’s anyone saying voice off only sign as the ideal for everyone. It touches a lot of nerves for people from their pain and their traumas on every side of the conversation.
[TM]
If anyone were to go out and interview and truly ask deaf people, “What was your experience? What was it like for you to learn how to navigate a sound-based world with limited access? What did that look like for you?” You would learn so much, but I feel like people assume that most people are this way, so our goal is to get you there. But I don’t feel like there’s enough understanding of what the life experience of a deaf person or a hard of hearing person really is, and the amount that is required in the brain to navigate this world and there’s so much missing so you have to really overcompensate in many different aspects to gain access and information.
So, I guess for me, the gift of having both and also, I’ve worked in the classroom settings and I see kids that get implants when they’re babies, which is understandable because that’s the critical time, but no sign language is offered, and some of these kids—it’s not successful and a critical window of development is missed, and then you see them go, “Oh, crap. Okay. This way isn’t working. So now we’ll start signing.” Yeah, it’s not too late, but if that language in any way would have been given to them earlier, you wouldn’t have the barriers that you will now face with a child that has experienced language deprivation, not intentionally, but they didn’t get that access when it was very, very critical.
So my suggestion is we know that whatever level of hearing loss they have, they do not have 100% access to a local of spoken language period—of different degrees, different levels. Yes, but the point is they don’t have 100% access. So by offering sign language and spoken language to children that have hearing loss, they’re basically covering your basis and you’re making sure that they have the access 100%, at least in some way so that they can develop in that critical window—learning window.
[LS]
Exactly, and that critical window is the critical period of language acquisition. So, I want to hear more about how it happened, that you came into this lunch room and then started going to the school. How did you learn sign language? Was it easy for you to pick up? Was it formal or just kind of by osmosis?
[TM]
You’re surrounded by it 24/7. So you learn very quickly in that type of environment. It was a very quick learning process because of that setting, but I’ve been teaching sign language for probably 20 years now, and I see people learning at many different stages in life and for many, many different reasons. I know a lot of people feel nervous or scared about the idea of learning a new language, and it seems overwhelming and complicated. But, it’s beautiful and it’s visual. Being able to see language and expression in a such a different way—it’s really powerful. I feel like it really does develop the brain in a really increased way.
Language is usually associated with being auditory. We hear it. Acquiring language also visually—it’s a very, very powerful.
[LS]
I teach in the university setting about Intro to Audiology and Oral Rehab, and I talked about sign language as visual, and it’s also very spatial in space and on your body, and so I always play them—someone telling kind of a kid’s story, a nursery rhyme or something, and when we watched those videos together, I say, “You don’t need to understand the signs. You know the story, so you have the context,” and when they see it, one of the things they notice and we talk about this is the idea of shifting your body for different characters, the story and how you could see people meeting, like you’re using your two hands for a meeting and those things. It’s so intuitive. It lends itself to have so much meaning past what the actual signs are.
[TM]
We as humans, we communicated with our bodies way before we develop spoken language. It’s really natural for us to communicate that way if we allow it to come through, and some people feel a little silly at first using their body and their face and their hands, and some people might call it even vulnerable, but I can’t imagine not having the gift of sign language.
[LS]
And I do want to add at the same time that this is not a patronizing or infantilizing way about sign language. It’s clearly a very high level and wonderful way to communicate. It’s not only quote unquote baby signs, which is just worst—grimacing over here. Or like, “Why is that the sign for that?” You hear that a lot from new users. “Why would that be the sign for such and such word?” and I say, “Well, why is butterfly the word for butterfly?” Are we talking about etymology? There is an arbitrariness to language as well.
[TM]
Yeah. A lot of things do have an iconic recognizable symbol of whatever concept or word it represents. You do have that, but not all of the signs are obvious gestures that like Charlie Chapman would use. It’s an actual language with grammar, structure and syntax.
[LS]
And the sign languages around the world, right? We’re talking about ASL, which is very different and not understandable across other sign languages.
[TM]
I wish—if I could wave my magic wand, my wish would be that we had as set of even just 20 universal gestures or signs that no matter where you go in the world—so the travel industry, the hospitality industry—everyone knew some simple gesture so that if we travel to other countries or interact with people of different languages, we have a little bit of a foundation and a basic way to connect and relate to people that speak a different language.
I travel a lot and I often think to myself, if only everyone could sign thank you or please—just some very basic words that we use just as humans, regardless of what language we speak, but maybe someday.
[LS]
Yes. Certain things that I learned when I was working at the school for the deaf in Brooklyn, I picked up the beginner sign language, maybe very conversational, but there were certain signs that I was naturally bringing home, like ready and done and let’s go just because that’s what I was doing at work. I was bringing it home and people would be like, “What are you doing?” but very quickly morphed into how we communicated at home as well—just like from a distance—and you start to notice it—
[TM]
As humans, we have some very common basic needs. Regardless of what language we speak, there are some very basic needs and readings. I don’t feel like it would be that hard. I mean, yes, the world is big and then it will be hard to distribute that, but it wouldn’t be that hard.
[LS]
Tara, I think I could talk to you all day, but I actually really do want to hear what happened when you finished school and what did you go on to do? And you have so many amazing things you need to tell us about. So, let’s go.
[TM]
Like the doctor said, I did eventually lose all of my hearing. I was in my late twenties when I reached that point, having grown up with sound, I knew what sound was, and I knew that I no longer had the ability to access it. So when I reached that point and I was a mother of five children and no longer able to hear their voices and I wanted that back, I wanted access to sound and so I’d made the decision to get a cochlear implant. So I was 38 when I got my first one, and luckily, I had a couple of friends that warned me, who had gotten implants that said those YouTube videos, you see people getting them turned on for the first time, and “Ah!” and crying, that’s not reality. For a baby that has no ex-preconceived expectation of sound, that would be a genuine reaction for them to all of a sudden be stimulated in a new way, but for an adult, when they first get a cochlear implant, if they have heard sound before and know what it should sound like, it is not going to be a positive experience. It’s not going to be pleasant and sure enough, it was horrible.
I’m going to be honest here when they first turned the implant on, it was absolutely horrible. Sound is code. It just comes in initially as a series of screeches and pings and beats and squeals and high pitched tinny sounds, and it’s awful. It really is. And then your brain has to go through the process of figuring out the code, categorizing it, filing it, figuring out which file to put it in and worth it. Yes, it was life-changing for me and has given me so much more access, but I really encourage parents to understand that it is very difficult. For a baby, that process, I don’t think it would be as awful because they don’t have an expectation for an adult or a teen, it is a very difficult experience. I still remember for the first couple of weeks after my implant had been turned on, no matter where I was, there was this scratchy, staticky wave of sound that just came and went constantly unless I took it off. Just constant waves of static, and I could not figure out what it was. It took me about two weeks to figure out that it was my breathing.
[LS]
[Laughs] You really want that all the time. Yes.
[TM]
I’d forgotten that breathing made a sound. Second of all, it didn’t sound like breathing as I would have imagined it, but it was funny. Once I figured out what it was, then it was like I had to listen to it a few more times and then it started to sound like breathing because I knew what it was, and I had an awareness. I knew what it sounded like before, so I was able to decode it. So then I had the conversation with my brain. It was like, “Oh, that’s what it was. Can you believe that?” “Yeah,” Aad so we had this dialogue and it was like, “Okay, okay. Now we know what it is. What do we do with it? Do we need to pay attention to it or can we put that away?” And it’s like, “Oh yeah, we can totally file that when we put it on. Oh wait. Unless it stops. If it stops, we should probably talk.”
[LS]
Or if you’re in yoga class.
[TM]
Oh yes, but every single sound through a process of identification and a filing away so that it could be used. And then you had to try to figure out sounds when other sounds were also present and being able to distinguish them.
So, it’s really an incredible process and it’s incredible that our minds are capable of it. Really, when you go through it as an adult and you really, really experientially understand at a mature age, what the brain goes through to acquire, to access the world of sound and words and language, it’s absolutely phenomenal.
So it was fun to really develop that appreciation for it and experience that as an adult was really pretty significant.
[LS]
That’s an amazing way of explaining what that process is, and it’s so individual, like you said, someone heard before, or didn’t how long it’s been since they’ve had sound, if it was gradual or something really quick happened to change their hearing, so what was the timeline about until you felt like you were really hearing and getting.
[TM]
I think it was about five months out when I was driving in my car and my kids were talking in the back seat and I could understand what they were saying. That was mind blowing for me. Before my implant, if I turned on the radio, all I could hear was static.
I would still wear hearing aids even up until I got implants. But all my hearing aids did was give me an awareness that sound had happened, not where it was, what it was. So for me to be able to turn on the radio and catch even half was just mind boggling to me. It was probably three months out where I started to feel like an implant helped me even more than my hearing aid had surpassed the level that my hearing tap, and then it got better and better and better, but people that are around someone that’s going through that process need to be very patient.
Like I would be like, ”What is that? I hear something, what is it?” “Oh, that’s a bird.” “Arebird, are you serious? It’s exciting to make those connections, you know, the sounds that are made in our world and then the ability to comprehend and appreciate them. And there are some sounds. I do not like I do not like the sound of flushing.
They’re not bad, but a public toilet. I have to take my implant off to flush the toilet because it is so loud and painful.
[LS]
Yeah. I also think it’s important for people to realize that while you were going through that process, you still had a way to communicate. You had a way to also still take it off and function without this being, this is my only option. “And if the batteries are out, I am stranded.”
[TM]
I remember working in a classroom and one day the oral classroom, next door, they brought one of their kids over to our classroom and they said his implant is broken and we’re not going to get another one for a couple of days. So they brought them to the signing classroom, but he didn’t know signs.
So we couldn’t help him either. We use body gestures and facial expressions and pointing and whatnot, but he was completely lost. I think sometimes people forget that even with implants, a person is still deaf because if those batteries die, if you’re in the water, that little contraption is the only thing that. You from being completely deaf. So it has always been helpful to have sign language in the backup to be able to shift to that when needed. And I also still greatly struggled in large groups. I usually still use a sign language interpreter in certain states because there’s too much noise going on and I will miss too much.
So I will still use sign language interpreters in certain settings. And it’s always very helpful to be able to do both. I did get my second implant a year and a half later. I admit I don’t wear my second one very much because the world is just a little too loud for me. I have gotten used to the world being a lot more quiet.
So I prefer things to be a little bit quieter. So I just wear by one and I do, where am I stuck in certain situations? Because it does help. I do hear more when I wear my second. It is helpful. It just, for me, not worth it to suffer through the level of noise that is it in the environment.
[LS]
The audiologist in me, when I was doing cochlear implant mapping wants to know, well, how can we get you to be more comfortable?
And let’s do mapping and less well of us. And at a certain point in the relationship between the audiologist and the patient, it’s absolutely your choice, your preference, your. And I have to also, I think, be that confident to say, this is the choice that’s working for me and how I want to interact with my world.
I don’t love the word bullied, but maybe sometimes people feel well, the professional is telling me I have to do this route. And there is a place for the conversation of, “Actually, what is good for you?” And I wouldn’t say that necessarily for kids at a certain point, but definitely for adults.
[TM]
For sure, yeah, and of course my audiologist said those same things and we did some tweaks and stuff, but ultimately it just came down to my level of comfort with my sound environment and what felt good to me.
[LS]
That goes back to what we said about the priorities, the whole person, your life—not just ears. We’re not just ears.
[TM]
Yes, I love that. We’re not just ears. It really is about the whole person and what feeds their soul, what makes them feel like they’re living their best life and that being normal in that sense isn’t always what makes a person feel like they’re living their best life.
So, we need to be open to other ways and not think, “Oh, I just can’t imagine. Cause if I couldn’t hear, I would be so miserable, I would be so lost. That is so frightening. So you must feel the same way. You must.” No, and it’s ironic because I look back on my life and I was always trying to escape silence. I was so frightened of silence. So, I always, even as I lost my hearing, I would keep noise going on in the background cause I was just scared of silence, and it’s so ironic now. I have reached the point over the last couple of years where the very thing that I had been running from all these years is now my most favorite sound in the whole world—is silence.
Silence is absolutely beautiful. That quiet place. It just permeates your whole being and now to realize what a gift it is to be able to just go there, just to touch a button and go to that beautiful silent place and be able to go right back—it’s a gift, and I never looked at it now. For me, it was always trying to escape it, running from it, being scared of it, and then to learn what a gift it was. It completely shifted how I see the world, how I live my life. It’s pretty interesting navigating a life with hearing loss. You’re going to go through different phases. You’re going to go through times where you feel like you’re thriving, like you’ve got to figure it out, and then something like a pandemic will hit and everyone will start wearing masks, and then you have to figure it all out, all over again but it’s being flexible and being adaptable. That’s a beautiful skill that people with hearing loss are kind of forced to develop. It can serve them well in a lot of other areas. So, it’s cool in that way.
[LS]
Yes, yes, absolutely. We hear a lot of people using the expression that for deaf gain and what are the positives, but the medicalized model doesn’t really make any room. Even for that question, we just want to fix it. We want to change it. We want to aid it and there is place. I remember another guest on the show shared that communication was so much the focus of everything that happened all through growing up and all the therapies, and she is a very eloquent communicator, even more so than maybe typically hearing people because that wasn’t the focus of their entire thousand hours type of thing, growing up, learning stuff.
[TM]
Yes, yes. Yeah. Being able to share thoughts—I have stuck in my head because you have stuff in your head. Communication is the ability to exchange that in whatever means works. It’s really incredible when you think about it that way.
[LS]
Yeah. Tara, I have so enjoyed our conversation. People know where they can find you and learn more about the amazing things.
[TS]
It’s an honor. So thank you. I used to teach in-person classes here in Idaho. I’m not doing that now, but I do have my lessons online on my website, and you can find that either by going to ASL expressions.com or wecansign.com will take you to the same place. And that’s easier to remember—we can sign. No spaces.
We have lessons for children. We have that sense for senior citizens. We have lessons for kiddos with autism or other special needs that make verbal communication difficult. It’s basically like a visual language tool. It’s not ASL. Those lessons are different. They’re tools to increase access to communication for those who are limited, and then simple courses for our senior citizens who are losing their hearing later in life, that aren’t wanting to learn the whole language, but the critical words that will help fill in some of those gaps, give them more puzzle pieces to work with when communicating with their family members.
So, yeah, it’s all there on our website and I’m on Facebook also. We can sign. I’m here. People have questions when you live a life. You’re the expert by default.
[LS]
Very true. I feel like we have to do part two where I could ask you all about raising your children and a lot more to talk about, but you let me know. That’d be great. Thank you so much. We’ll have all those links in the show.
Thank you all for listening and being a supporter of the All About Audiology Podcast. If you would like to become a patron of the show, please go and visit patrion.com/all about audiology. I’m Dr. Lilach Saperstein, and this is the all about audiology podcast.
Read the full transcript here
Today on the All About Audiology Podcast, Dr. Saperstein speaks with Tara Marie from We Can Sign. Tara shares her story with different educational settings. When she attended a Deaf School, she felt she was able to finally flourish in an environment that felt right for her. In this academic setting, Tara was able to access sports, participate in tournaments, travel, and even become the student body president during her senior year. She has been teaching sign language for roughly 20 years, and holds online educational sessions. Tune into the powerful story and inspiring perspective that Tara brings to the table all from her own life story.
This week on the All About Audiology podcast:
2:30 – Individuals with hearing loss can be successful; specialists should not undermine the potential of their patients
7:30 – To disclose or not to disclose one’s hearing loss is up to each individual. It is important to balance the pros and cons depending on the situation one finds themself in
12:30 – Children who are hard of hearing are diminished when the adults in their life try to make them function, look, and act as normal as possible
15:00 – If that child feels positive about their future, if they feel good about themselves, if they have support from their peers and adults, they will be much better off.
16:00 – Tara finds that spending time with her friends who also have hearing loss, fuels her.
19:00 – Tara says that since children with hearing loss do not have 100% access to hearing, relaying on both a CI and ASL gives a child holistic access to communication.
26:00 – Going from knowing what hearing should sound like and then transferring to hearing sound through a cochlear implant, may not initially be a positive experience
32:00- If the batteries of a CI die, Tara finds that it has always been helpful to have sign language in her back pocket in order to shift as per needed.
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)
https://www.wecansign.com/with-tara.html
https://www.facebook.com/signingforeveryone/
https://www.instagram.com/wecansign/
https://www.wecansign.com/contact.html
Mentioned in this episode:
-Brene Brown
-Idaho Educational Services for the Dead and the Blind
Listen Next/Related Episodes
–All About Believing in Your Child- Episode 51 with Chaya Klughaupt
Transcript:
[DR. LILACH SAPERSTEIN]
Welcome back to the All About Audiology Podcast. I’m your host, Dr. Lilach Saperstein. I’m an audiologist and a parenting coach focusing on the relationship and the connections that we have with those amazing and important children in our lives that happen to also be hard of hearing or deaf, and so, we are really excited to welcome you to this episode today.
And we’re going to be speaking with Tara Marie from ASL Expressions, and we’re going to be talking about how using American Sign Language or any sign language can be a really huge and important part of your journey. So welcome, Tara. Thank you for coming on the show.
[TARA MARIE]
Thank you. Thank you. Yeah, I appreciate it. I am doing very well. Thank you. The sun is out. Spring is starting to peak up.
[LS]
We all need a little bit of falling out for sure. We’re done with this winter. I’d love to hear more about your journey, your background, and I know we have a lot of parents who are listening that might really feel overwhelmed and scared and nervous, and there’s so much information on the internet. Everyone has so many opinions. So where did you come into all of this?
[TM]
When I was about three, my mom started to notice that I was missing things that I had heard before but wasn’t responding to, and so she took me to our pediatrician and said, “I think she might be losing her hearing.” So he said, “Oh, let me talk with her,” and so, he had me come up and we had a conversation and I was very chatty. I was not shy, and just very engaged. And obviously, we were in a one-on-one situation so I did just fine, and the doctor looked at my mom and he just laughed, and he said, “She does not have a hearing loss.” He said, “She has selective hearing or mother deafness. So basically, she’s ignoring you.”
[LS]
The amount that my eyes are rolling. They cannot go any higher.
[TM]
I know. It’s crazy, and it’s funny because that happened a couple more times. She finally went to a different doctor—somebody that was a specialist and they found easily that I did indeed have a hearing loss, and from the testing, they found that it would most likely be a very progressive loss and that I would eventually lose all of my hearing. So my mom’s—she starts getting emotional. Tears start rolling, and the doctor—he pats her on the back and he says, “It’s okay, Janet. I know this is devastating news. I’m going to be honest with you. It’s very likely she probably will not graduate from high school, but she’s a cute little thing and she’ll be okay, and just do the best that you can,” and my mother—those tears stopped immediately and her emotion changed to anger, and she says, “You cannot tell me that this bright little girl is not going to graduate from high school, just because she loses her hearing,” and that was it. That was unacceptable to her, and I am so thankful that it was unacceptable to her. Really.
I was the oldest of six children, but it was so important to my parents that my hearing loss did not prevent me from access to the world. Something else that the doctor told my parents—I know that it’s an opinion, that’s widely circulated, but I disagree with it—but the doctor told my parents, “Don’t sign with her. If you sign with her, she’ll stop talking.”
I already had excellent speech, but they suggested that by adding sign language, that I would stopped talking, but also he told her that I would eventually be completely deaf, and this was before cochlear implants were even a thing. So it was kind of interesting. And with that prediction, it’s kind of baffling to think, well, what was he expecting when I reached that point where I could no longer hear anything?
So, I didn’t learn sign language as a child, and it wasn’t until middle school that that got to be a problem. It was in middle school that my hearing just tanked—just very aggressively. Those were really rough times, even through adulthood, when I would drive past that middle school that I attended at that time in my life, I would still get a little bit of PTSD. It was a very traumatic time for me, and that was before masks. As a matter of fact, one of my children, I have two children that are hard of hearing. I had to pull him out of school and homeschool him this year because he’s not deaf enough to really use a sign language interpreter cause he can still hear the English at the same time, but he can’t hear well enough without reading lips, so he was so lost.
So anyways, I can’t even imagine had there been masks back then—how much more difficult it would have been, but I mean, I would come home from school daily, just crying, just in tears. It was such a miserable time for me, and so finally, my parents decided to check into an option that they had been resisting for a long time, and that was the residential deaf school here in Idaho.
It’s in a very small town. There’s very little industry other than farming out there. So if a parent had a deaf child and wanted to move near the deaf school so that their child could be a day student, it would be very difficult for them to find work. The location is not ideal, so I would be sent away to school and I would live there during the week and come home on the weekends and holidays and summers, so that was very much a last resort for my parents, but we decided to go visit and just check out that option because we were really literally out of options there, and I needed to learn sign—like immediately.
[LS]
Can I ask you a question about your experience and not to poke at the pain because it’s so real—we talk about this a lot on the show that the things that happened to you in the past live with you. It’s not finished and gone. It really continues to affect you, and what I want to know is if you can pinpoint—was it more on the academic side, more on the social, the exhaustion, or was it everything all at once—not being able to cope at that time? And the reason I’m asking you is for the parents of school-aged children. When they see their children in that distress—to really get a sense of what’s going on for them.
[TM]
That is an excellent question. Thank you.
I would probably put social at the top. I was struggling academically, but social. I was not even fully aware of what I was missing academically and didn’t really care because the [inaudible] of my day was how to function in a world that I had no access to. So, it was really social.
I would wear my hair down. I always kept my hair long and I would wear it down over my ears. I would strategically position my hair so that my hearing aids would not accidentally reveal themselves to anyone. I did not want anyone to know that I couldn’t hear. I preferred that people think I was a snot—preferably that over them, knowing she wears hearing aid. Her ears don’t work right? In my mind, I had imagined what people would say about me if they knew that I couldn’t hear.
[LS]
Do you think you were quote on quote fooling anyone?
[TM]
No. I mean, maybe some people, because deafness it’s not a visible disability, especially if you can’t see a contraption on someone’s ears. So, yeah, I’m sure I follow people that didn’t know me and hadn’t met me, but anyone that had met me and tried to converse with me—if there was any background noise, or if they didn’t enunciate just very, very clearly, it would be obvious that something was off—that I wasn’t able to hear.
[LS]
Sure. Because people talk about that a lot—to disclose or not to disclose in social settings, even in job interviews, as adults. My advice to my patients is always, “Listen, they’re going to know something. So either they’re going to know that you aren’t paying attention, are rude, are out of it are spacing out—whatever the perception is going to be or you could just tell them right off the bat and then they’ll help you with the access to it,” I mean, at least they should, “and if they don’t and maybe you don’t want that job.”
[TM]
Exactly, and I don’t know where that came from, where that shame of hearing loss came from. And honestly saying that out loud, it kind of makes me want to dig and figure out where did that come from? I don’t know. And my family was wonderful to me. It wasn’t like I was mistreated at home. I was left out of situations. They tried to include me, but I mean, nobody could fix it for me. Nobody. So they did the best they could, so I don’t know where that intense shame came from.
[LS]
I’m going to put it out there. That middle school is a difficult time for everybody—figuring out their identity and who they want to be, and they want to fit in.
[TM]
That’s a tough age already. Put in the hearing loss and nobody that age wants to be different or strange or have something quote quote wrong with them. So it was very, very, very challenging. Yeah. It was a very, very miserable time in my life. And,, I appreciate that my parents wanted to make it better for me, and they were willing to look for other options—that they were willing to see what else we could do to make my education experience better and my social experience better.
So, we went to visit the deaf school. And we arrived at about noon and all of the kids in the school were sitting around tables in the cafeteria, and I will never, ever, ever forget the feeling that washed over me. When I looked around the room and saw a room full of people, just like me, people wearing hearing proudly with brightly colored ear molds.
No one was trying to hide them. People were signing, they were laughing. It was just completely normal in a different way, and I was just frozen, just stunned. And I turned to my parents and said, “I need to find a bathroom. I need to go to the bathroom.” They’re like, “What? Now?” But I didn’t really need to go to the bathroom. I needed a mirror because I wanted to put my hair up in a ponytail and make sure that it looked just right so that I could go back out into that cafeteria and let everybody know, “Hey, look, I’m just like you.”
[LS]
What a story.
[TM]
A life changing moment for me. Like, literally. I can’t even explain the feeling of being connected to people that understand, that have walked that path in anything, not just hearing loss.
When I walked out there with my hair up and my hearing aid showing, my parents were like, “That’s it.” That made the choice very, very obvious, but we agreed, “Okay, I’ll go for one year and learn sign language really quickly.”
The plan was I would come back and go to the public school with an interpreter. I went my freshman year. That’s when I started and I graduated there. I didn’t come back home after one year. How could I? I had access to sports. I was able to become the student body president [on] my senior year. I was able to go on trips and tournaments. Everywhere I went I could communicate. Everywhere I went, I had asked so I was not about to give that up and go back to public school. It just wasn’t for me at that time.
[LS]
You brought up shame – that feeling that so many of us can relate to, and the big stigma around disabilities, specifically hearing loss. Brene Brown talks about shame–very, very beautiful speaker. She said about how the opposite of belonging, which is what you’re describing this beautiful sense of home, of being among people who understand you and you can understand them, you have access—so the opposite of belonging is fitting in because fitting in is everyone’s the same and no one has identity, and no one sees you as yourself, but belonging and community is you’re still an individual, but you’re Important and your strengths are valued and you have support for your weaknesses if you want to use the word or places where you need support, we prop each other up. [Laughs] I’m feeling your story. I’m with you.
[TM]
Yeah. It was such a crazy time.
Those were such happy years for me. I don’t assume that that’s perfect for everyone. Parents of children with hearing loss—the best thing that they can hear and understand is that there isn’t a one size fits all approach. There isn’t. [It’s important] to really be in tune and intuitive to your child’s needs and the goal of their happiness and wellbeing being at the top. If they are in that place, then all of the other things will fall in line but when you have a child that is miserable and feels cut off from the world around them, that feels ashamed, that feels that will prevent them. It doesn’t matter how smart they get from whatever method you use educationally, starting with the heart and a sense of belonging and ability to access—if you have that in place solid, everything else from how I see it, will work itself out. It will be easier to find the ways that support that child and be open to whatever that may be. It may not be what you want it to be. And I know that it can be frightening for a parent. Anytime you have a child, that’s going to be different in any way. Our first instinct is fear. We don’t want them to be bullied. We don’t want them to be ostracized or left out. We don’t want them to not have every opportunity to live their best life, and so there’s that fear and so we automatically think that the solution is to make them as normal as possible but we miss something along the way when we do that, when the goal is to make them function and look, and act as normal as possible—even though the intention is good, we’re trying to protect them and give them opportunities for their best life but something really big and important is missed.
[LS]
We talk about the goals—the IEP goals, from the speech therapist, from the teachers and how those goals are very important, and we want to have professionals in our lives helping us progress and making us focus on the areas we can strengthen, but you don’t ever see a goal of my child should feel confident, capable, that they could do things, that they could make friends, that their contribution is important—maybe you do see some of those pragmatic goals, but in a sense, these are the things that are beyond their service goals that you really have to change everything around the environment and the priorities—so powerful.
[TM]
Very true. Yeah, and it’s hard because most of our meetings and our help—our intervention is really focused on academics and that’s put before the mental wellbeing of the individual, and I think that that’s kind of where we get mixed up. I think that’s kind of where we need to look more into that and figure out ways to make that the priority because everything else will be much easier. All the other barriers we’ll be able to work through. If that child feels positive about their future, if they feel good about themselves, if they have peer support and adults too—adult role models that show them, “Oh, I can do things. I have every ability to reach my dreams.” If you instill in them that hope, they’ll be motivated to break down those barriers. They’ll be an active participant in their success in life. They’ll be motivated. So, I carry that still. Even though I can speak, and I now have cochlear implants—I would love to talk a little bit about those as well. But it is still such a big part of my life and having the deaf community in my life—when I get together with my deaf friends, it’s almost like I’m getting filled up with gas. It’s almost like a refueling cause if you connect with others that understand this path, this life experience and you relate, it’s kind of like a fueling, and those conversations are effortless. I don’t have to be in my mind grasping puzzle pieces and trying to fill in the blanks, the missing information—my brain can rest in a social situation. That is very, very significant and very powerful, and very helpful. For me, it’s allowed me to comfortably and confidently navigate both worlds in a healthy way, because I have support on both sides, so that has been very helpful for me, and I know that there is still this idea that sign language can hold people back with hearing loss, and I would like to submit my opinion that having second or third languages, knowing multiple languages has been proven to be very, very beneficial to people and the development of their brain. So, why wouldn’t we want a deaf child to have access to more than one language? Maybe for a while, they’ll prefer one over the other, especially with hearing loss, cause the signing is easier for them. They have more access but they’ll have to navigate in the hearing world. So of course, with the competence and language skills developed, they will be able to navigate and they will be able to incorporate both languages and maybe even more than two languages into their experience.
[LS]
A language is an asset. Absolutely. That’s what my high school Spanish teacher would tell us all the time. When I took Spanish class in high school, she said, “Languages is an asset. You don’t know what it brings for you, even in the future,” and then there’s this big misconception in this conversation that it’s either/or. I mean, please, why can’t it be both? And it’s interesting, right? Because the people who say it’s either/or are generally people who would prefer that the child would be oral—auditory-oral approach, but people who are huge advocates for sign language are advocates for bilingual, bicultural, like do everything as much as you can, as much access and support each other. I don’t know that there’s anyone saying voice off only sign as the ideal for everyone. It touches a lot of nerves for people from their pain and their traumas on every side of the conversation.
[TM]
If anyone were to go out and interview and truly ask deaf people, “What was your experience? What was it like for you to learn how to navigate a sound-based world with limited access? What did that look like for you?” You would learn so much, but I feel like people assume that most people are this way, so our goal is to get you there. But I don’t feel like there’s enough understanding of what the life experience of a deaf person or a hard of hearing person really is, and the amount that is required in the brain to navigate this world and there’s so much missing so you have to really overcompensate in many different aspects to gain access and information.
So, I guess for me, the gift of having both and also, I’ve worked in the classroom settings and I see kids that get implants when they’re babies, which is understandable because that’s the critical time, but no sign language is offered, and some of these kids—it’s not successful and a critical window of development is missed, and then you see them go, “Oh, crap. Okay. This way isn’t working. So now we’ll start signing.” Yeah, it’s not too late, but if that language in any way would have been given to them earlier, you wouldn’t have the barriers that you will now face with a child that has experienced language deprivation, not intentionally, but they didn’t get that access when it was very, very critical.
So my suggestion is we know that whatever level of hearing loss they have, they do not have 100% access to a local of spoken language period—of different degrees, different levels. Yes, but the point is they don’t have 100% access. So by offering sign language and spoken language to children that have hearing loss, they’re basically covering your basis and you’re making sure that they have the access 100%, at least in some way so that they can develop in that critical window—learning window.
[LS]
Exactly, and that critical window is the critical period of language acquisition. So, I want to hear more about how it happened, that you came into this lunch room and then started going to the school. How did you learn sign language? Was it easy for you to pick up? Was it formal or just kind of by osmosis?
[TM]
You’re surrounded by it 24/7. So you learn very quickly in that type of environment. It was a very quick learning process because of that setting, but I’ve been teaching sign language for probably 20 years now, and I see people learning at many different stages in life and for many, many different reasons. I know a lot of people feel nervous or scared about the idea of learning a new language, and it seems overwhelming and complicated. But, it’s beautiful and it’s visual. Being able to see language and expression in a such a different way—it’s really powerful. I feel like it really does develop the brain in a really increased way.
Language is usually associated with being auditory. We hear it. Acquiring language also visually—it’s a very, very powerful.
[LS]
I teach in the university setting about Intro to Audiology and Oral Rehab, and I talked about sign language as visual, and it’s also very spatial in space and on your body, and so I always play them—someone telling kind of a kid’s story, a nursery rhyme or something, and when we watched those videos together, I say, “You don’t need to understand the signs. You know the story, so you have the context,” and when they see it, one of the things they notice and we talk about this is the idea of shifting your body for different characters, the story and how you could see people meeting, like you’re using your two hands for a meeting and those things. It’s so intuitive. It lends itself to have so much meaning past what the actual signs are.
[TM]
We as humans, we communicated with our bodies way before we develop spoken language. It’s really natural for us to communicate that way if we allow it to come through, and some people feel a little silly at first using their body and their face and their hands, and some people might call it even vulnerable, but I can’t imagine not having the gift of sign language.
[LS]
And I do want to add at the same time that this is not a patronizing or infantilizing way about sign language. It’s clearly a very high level and wonderful way to communicate. It’s not only quote unquote baby signs, which is just worst—grimacing over here. Or like, “Why is that the sign for that?” You hear that a lot from new users. “Why would that be the sign for such and such word?” and I say, “Well, why is butterfly the word for butterfly?” Are we talking about etymology? There is an arbitrariness to language as well.
[TM]
Yeah. A lot of things do have an iconic recognizable symbol of whatever concept or word it represents. You do have that, but not all of the signs are obvious gestures that like Charlie Chapman would use. It’s an actual language with grammar, structure and syntax.
[LS]
And the sign languages around the world, right? We’re talking about ASL, which is very different and not understandable across other sign languages.
[TM]
I wish—if I could wave my magic wand, my wish would be that we had as set of even just 20 universal gestures or signs that no matter where you go in the world—so the travel industry, the hospitality industry—everyone knew some simple gesture so that if we travel to other countries or interact with people of different languages, we have a little bit of a foundation and a basic way to connect and relate to people that speak a different language.
I travel a lot and I often think to myself, if only everyone could sign thank you or please—just some very basic words that we use just as humans, regardless of what language we speak, but maybe someday.
[LS]
Yes. Certain things that I learned when I was working at the school for the deaf in Brooklyn, I picked up the beginner sign language, maybe very conversational, but there were certain signs that I was naturally bringing home, like ready and done and let’s go just because that’s what I was doing at work. I was bringing it home and people would be like, “What are you doing?” but very quickly morphed into how we communicated at home as well—just like from a distance—and you start to notice it—
[TM]
As humans, we have some very common basic needs. Regardless of what language we speak, there are some very basic needs and readings. I don’t feel like it would be that hard. I mean, yes, the world is big and then it will be hard to distribute that, but it wouldn’t be that hard.
[LS]
Tara, I think I could talk to you all day, but I actually really do want to hear what happened when you finished school and what did you go on to do? And you have so many amazing things you need to tell us about. So, let’s go.
[TM]
Like the doctor said, I did eventually lose all of my hearing. I was in my late twenties when I reached that point, having grown up with sound, I knew what sound was, and I knew that I no longer had the ability to access it. So when I reached that point and I was a mother of five children and no longer able to hear their voices and I wanted that back, I wanted access to sound and so I’d made the decision to get a cochlear implant. So I was 38 when I got my first one, and luckily, I had a couple of friends that warned me, who had gotten implants that said those YouTube videos, you see people getting them turned on for the first time, and “Ah!” and crying, that’s not reality. For a baby that has no ex-preconceived expectation of sound, that would be a genuine reaction for them to all of a sudden be stimulated in a new way, but for an adult, when they first get a cochlear implant, if they have heard sound before and know what it should sound like, it is not going to be a positive experience. It’s not going to be pleasant and sure enough, it was horrible.
I’m going to be honest here when they first turned the implant on, it was absolutely horrible. Sound is code. It just comes in initially as a series of screeches and pings and beats and squeals and high pitched tinny sounds, and it’s awful. It really is. And then your brain has to go through the process of figuring out the code, categorizing it, filing it, figuring out which file to put it in and worth it. Yes, it was life-changing for me and has given me so much more access, but I really encourage parents to understand that it is very difficult. For a baby, that process, I don’t think it would be as awful because they don’t have an expectation for an adult or a teen, it is a very difficult experience. I still remember for the first couple of weeks after my implant had been turned on, no matter where I was, there was this scratchy, staticky wave of sound that just came and went constantly unless I took it off. Just constant waves of static, and I could not figure out what it was. It took me about two weeks to figure out that it was my breathing.
[LS]
[Laughs] You really want that all the time. Yes.
[TM]
I’d forgotten that breathing made a sound. Second of all, it didn’t sound like breathing as I would have imagined it, but it was funny. Once I figured out what it was, then it was like I had to listen to it a few more times and then it started to sound like breathing because I knew what it was, and I had an awareness. I knew what it sounded like before, so I was able to decode it. So then I had the conversation with my brain. It was like, “Oh, that’s what it was. Can you believe that?” “Yeah,” Aad so we had this dialogue and it was like, “Okay, okay. Now we know what it is. What do we do with it? Do we need to pay attention to it or can we put that away?” And it’s like, “Oh yeah, we can totally file that when we put it on. Oh wait. Unless it stops. If it stops, we should probably talk.”
[LS]
Or if you’re in yoga class.
[TM]
Oh yes, but every single sound through a process of identification and a filing away so that it could be used. And then you had to try to figure out sounds when other sounds were also present and being able to distinguish them.
So, it’s really an incredible process and it’s incredible that our minds are capable of it. Really, when you go through it as an adult and you really, really experientially understand at a mature age, what the brain goes through to acquire, to access the world of sound and words and language, it’s absolutely phenomenal.
So it was fun to really develop that appreciation for it and experience that as an adult was really pretty significant.
[LS]
That’s an amazing way of explaining what that process is, and it’s so individual, like you said, someone heard before, or didn’t how long it’s been since they’ve had sound, if it was gradual or something really quick happened to change their hearing, so what was the timeline about until you felt like you were really hearing and getting.
[TM]
I think it was about five months out when I was driving in my car and my kids were talking in the back seat and I could understand what they were saying. That was mind blowing for me. Before my implant, if I turned on the radio, all I could hear was static.
I would still wear hearing aids even up until I got implants. But all my hearing aids did was give me an awareness that sound had happened, not where it was, what it was. So for me to be able to turn on the radio and catch even half was just mind boggling to me. It was probably three months out where I started to feel like an implant helped me even more than my hearing aid had surpassed the level that my hearing tap, and then it got better and better and better, but people that are around someone that’s going through that process need to be very patient.
Like I would be like, ”What is that? I hear something, what is it?” “Oh, that’s a bird.” “Arebird, are you serious? It’s exciting to make those connections, you know, the sounds that are made in our world and then the ability to comprehend and appreciate them. And there are some sounds. I do not like I do not like the sound of flushing.
They’re not bad, but a public toilet. I have to take my implant off to flush the toilet because it is so loud and painful.
[LS]
Yeah. I also think it’s important for people to realize that while you were going through that process, you still had a way to communicate. You had a way to also still take it off and function without this being, this is my only option. “And if the batteries are out, I am stranded.”
[TM]
I remember working in a classroom and one day the oral classroom, next door, they brought one of their kids over to our classroom and they said his implant is broken and we’re not going to get another one for a couple of days. So they brought them to the signing classroom, but he didn’t know signs.
So we couldn’t help him either. We use body gestures and facial expressions and pointing and whatnot, but he was completely lost. I think sometimes people forget that even with implants, a person is still deaf because if those batteries die, if you’re in the water, that little contraption is the only thing that. You from being completely deaf. So it has always been helpful to have sign language in the backup to be able to shift to that when needed. And I also still greatly struggled in large groups. I usually still use a sign language interpreter in certain states because there’s too much noise going on and I will miss too much.
So I will still use sign language interpreters in certain settings. And it’s always very helpful to be able to do both. I did get my second implant a year and a half later. I admit I don’t wear my second one very much because the world is just a little too loud for me. I have gotten used to the world being a lot more quiet.
So I prefer things to be a little bit quieter. So I just wear by one and I do, where am I stuck in certain situations? Because it does help. I do hear more when I wear my second. It is helpful. It just, for me, not worth it to suffer through the level of noise that is it in the environment.
[LS]
The audiologist in me, when I was doing cochlear implant mapping wants to know, well, how can we get you to be more comfortable?
And let’s do mapping and less well of us. And at a certain point in the relationship between the audiologist and the patient, it’s absolutely your choice, your preference, your. And I have to also, I think, be that confident to say, this is the choice that’s working for me and how I want to interact with my world.
I don’t love the word bullied, but maybe sometimes people feel well, the professional is telling me I have to do this route. And there is a place for the conversation of, “Actually, what is good for you?” And I wouldn’t say that necessarily for kids at a certain point, but definitely for adults.
[TM]
For sure, yeah, and of course my audiologist said those same things and we did some tweaks and stuff, but ultimately it just came down to my level of comfort with my sound environment and what felt good to me.
[LS]
That goes back to what we said about the priorities, the whole person, your life—not just ears. We’re not just ears.
[TM]
Yes, I love that. We’re not just ears. It really is about the whole person and what feeds their soul, what makes them feel like they’re living their best life and that being normal in that sense isn’t always what makes a person feel like they’re living their best life.
So, we need to be open to other ways and not think, “Oh, I just can’t imagine. Cause if I couldn’t hear, I would be so miserable, I would be so lost. That is so frightening. So you must feel the same way. You must.” No, and it’s ironic because I look back on my life and I was always trying to escape silence. I was so frightened of silence. So, I always, even as I lost my hearing, I would keep noise going on in the background cause I was just scared of silence, and it’s so ironic now. I have reached the point over the last couple of years where the very thing that I had been running from all these years is now my most favorite sound in the whole world—is silence.
Silence is absolutely beautiful. That quiet place. It just permeates your whole being and now to realize what a gift it is to be able to just go there, just to touch a button and go to that beautiful silent place and be able to go right back—it’s a gift, and I never looked at it now. For me, it was always trying to escape it, running from it, being scared of it, and then to learn what a gift it was. It completely shifted how I see the world, how I live my life. It’s pretty interesting navigating a life with hearing loss. You’re going to go through different phases. You’re going to go through times where you feel like you’re thriving, like you’ve got to figure it out, and then something like a pandemic will hit and everyone will start wearing masks, and then you have to figure it all out, all over again but it’s being flexible and being adaptable. That’s a beautiful skill that people with hearing loss are kind of forced to develop. It can serve them well in a lot of other areas. So, it’s cool in that way.
[LS]
Yes, yes, absolutely. We hear a lot of people using the expression that for deaf gain and what are the positives, but the medicalized model doesn’t really make any room. Even for that question, we just want to fix it. We want to change it. We want to aid it and there is place. I remember another guest on the show shared that communication was so much the focus of everything that happened all through growing up and all the therapies, and she is a very eloquent communicator, even more so than maybe typically hearing people because that wasn’t the focus of their entire thousand hours type of thing, growing up, learning stuff.
[TM]
Yes, yes. Yeah. Being able to share thoughts—I have stuck in my head because you have stuff in your head. Communication is the ability to exchange that in whatever means works. It’s really incredible when you think about it that way.
[LS]
Yeah. Tara, I have so enjoyed our conversation. People know where they can find you and learn more about the amazing things.
[TS]
It’s an honor. So thank you. I used to teach in-person classes here in Idaho. I’m not doing that now, but I do have my lessons online on my website, and you can find that either by going to ASL expressions.com or wecansign.com will take you to the same place. And that’s easier to remember—we can sign. No spaces.
We have lessons for children. We have that sense for senior citizens. We have lessons for kiddos with autism or other special needs that make verbal communication difficult. It’s basically like a visual language tool. It’s not ASL. Those lessons are different. They’re tools to increase access to communication for those who are limited, and then simple courses for our senior citizens who are losing their hearing later in life, that aren’t wanting to learn the whole language, but the critical words that will help fill in some of those gaps, give them more puzzle pieces to work with when communicating with their family members.
So, yeah, it’s all there on our website and I’m on Facebook also. We can sign. I’m here. People have questions when you live a life. You’re the expert by default.
[LS]
Very true. I feel like we have to do part two where I could ask you all about raising your children and a lot more to talk about, but you let me know. That’d be great. Thank you so much. We’ll have all those links in the show.
Thank you all for listening and being a supporter of the All About Audiology Podcast. If you would like to become a patron of the show, please go and visit patrion.com/all about audiology. I’m Dr. Lilach Saperstein, and this is the all about audiology podcast.
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