Episode 1 –

Show Notes

On today’s episode of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Jessica interviewed Wendy Deters about being raised by her parents who are deaf. Here are some of the takeaways:

• Terminology is tricky! Should you say, “deaf person,” “person who is deaf,” “person with hearing loss,” or something else entirely? We typically either ask what terminology to use or mirror the terminology that someone uses.
• Things used to be different when Wendy’s parents were growing up! They each only had one hearing aid and were brought up in the hearing world without all of the supports that children these days have. And they’re doing wonderfully!
• Some jargon explained:
  • Profound hearing loss: a level of hearing loss where a person cannot hear a sound unless it is at least 90 dB loud (as loud as a lawnmower or motorcycle)
  • Moderate to severe hearing loss: a level of hearing loss where a person cannot hear a sound unless it is at least 40-80 dB loud (dog barking, some speech sounds)
  • “Big D Deaf world”: people who identify as culturally deaf and have a strong deaf identity
  • Open set identification: ability to identify words through listening without having choices in front of you
  • Neuropathy: aka auditory neuropathy:  a hearing disorder in which the inner ear successfully detects sound, but has a problem with sending sound from the ear to the brain
  • Total communication: is a philosophy of educating children with hearing loss that incorporates all means of communication; formal signs, natural gestures, fingerspelling, body language, listening, lipreading and speech
  • Mainstreaming: process of placing a student with special needs into a classroom with children without special needs
• What a CI sounds like: https://www.youtube.com/watch?v=1dhTWVMcpC4

Show Transcript

Tatum: Welcome to Episode 1 of All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss and the professionals who serve them. We’re your hosts. I’m Tatum Fritz.

Jessica: And I’m Jessica Brock and welcome to our first episode. We’re so excited to have you. Today we will be talking with Wendy Deters about being raised by her parents who are deaf but before we get into that discussion, we have Dr. Michele Wilkins with us to talk to us about what Child’s Voice is and what we do.

Welcome Dr. Michele.

Dr. Michele: Hi Jessica thanks for the opportunity for me to be on your podcast.

Jessica: You’re welcome. Thanks for being on our podcast. Dr. Michele is the executive director of Child’s Voice so we’re honored to have her here.

Jessica: Dr. Michele, many of our listeners will know what Child’s Voice is and what we do but some might not.

Tatum: So we wanted to have you on the show to help us discuss the important work Child’s Voice does. To quickly inform our listeners, Child’s Voice is a listening-and-spoken-language program that serves children with hearing loss. We offer audiology services, Early Intervention speech and aural rehabilitation services, and a preschool and primary listening-and-spoken-language program.We have locations in both Wood Dale, IL, which is a suburb of Chicago, and in Roscoe Village, which is a neighborhood in Chicago. Our preschool, primary school, and audiology programs are all located in Wood Dale. And then our Early Intervention services are provided at both our Wood Dale and Chicago locations. And then at our Chicago location, we also provide  private speech, auditory-verbal, and aural rehabilitation therapy is provided for children over the age of 3. Dr. Michele, do you want to share more about the services we offer?

Dr. Michele: Sure, absolutely, our pride and joy. My background is in deaf education and I have been an educator or an administrator of sorts for the past 42 years, pretty incredible. Yeah.

Dr. Michele: Yeah, very exciting. And for the past 20 years, I’ve been here at Child’s Voice so my heart and my passion is part of the program here. Child’s Voice has a number of services that we provide beginning in early intervention. We have a pediatric audiology center. We follow all our children in the school and many of our alumni. We are also a referral site for birthing hospitals for children that have failed the newborn screening, they can come here for testing. We also have a school program, ages three to seven are in the school program. And our goal overall is to prepare these children with hearing loss to enter their mainstream school when they’re ready. they are competitive with their hearing peers. And I will say we are experts at what we do. We have an expert staff that is made up of speech-language pathologists, teachers of the deaf, audiologists, a music teacher, and then great support staff that supports all of us to do what we need to do.

J: Excellent and our kids do so well.

Dr. Michele: Our kids do so well. And the major piece of that I truly believe is we are all focused to do one thing and that is teach children with hearing loss how to listen and how to talk. And so our mission at Child’s Voice is to empower children with hearing loss to be successful in all educational and social settings by optimizing their listening, their speaking, and academic skills. I think we do it pretty good.

Jessica: I think so too *laughs*. So one of the phrases that you mentioned and that will come a lot throughout our podcast is listening and spoken language.

Tatum: And to put it briefly for our listeners, listening-and-spoken-language is a communication approach that focuses on teaching children with hearing loss to listen and talk through the use of amplification, so that would be cochlear implants and hearing aids. The main tenet of the approach is the belief that children with hearing loss learn spoken language best through the same way children without hearing loss learn language, through listening. Dr. Michele, would you like to expand on listening and spoken language and how it applies to Child’s Voice?

Dr. Michele: Right, so again at Child’s Voice, philosophically we believe and follow the tenets that children will learn through audition to develop their spoken language and their language skills. So we stimulate the auditory brain development, helping these children gain access through a device that every child will wear, either a cochlear implant or a hearing aid to have access to sound.Listening and spoken language, auditory development, philosophically believing in those realms is much more than not the presence of sign language and encompasses really the art and the instruction of having children be keyed in to their environmental sounds to be an auditory learner and to use all the hearing that they do have and what they are able to receive through devices. Globally, overall, our goal is to have them leave Child’s Voice and join their hearing peers in their mainstream schools.

Jessica: And I think what I really like about what you said, it’s not just the absence of sign language, it’s a full educational and philosophical system that requires a lot of knowledge both from, well from our staff but then hopefully our  goal is to share that knowledge with families so that the entire family system can grow with the child. And that’s really how we see a lot of success.

Dr. Michele: Kudos to Child’s Voice.

Jessica; yeah, go us.

*laughs*

Jessica: Awesome, is there anything else that you wanted add?

Dr. Michele: Oh gosh, I could probably talk about Child’s Voice so possibly I could come on to another segment that you have and look at another aspect of what you do here.

Jessica: We would love that, we would love that. Thank you so much for talking with us today, we hope to have you on again in the future. But next we’ll be bringing out Wendy Deters on the show with us to discuss her experience being raised by her parents who are Deaf.

Tatum: But really  quickly before we do, Jessica and I wanted to make our own area of expertise really clear for our listeners. So as Dr. Michele just shared, Child’s Voice, as a program, specializes in teaching listening and spoken language skills through the use of amplification so this podcast will likely have a listening-and-spoken-language slant since that is our background. However, while we are a listening-and-spoken-language program, this is also a hearing loss podcast that aims, as we’ve said to discuss all things hearing loss, so other modes of communication may be touched to some extent over the course of this season and over the course of this podcast. Now let’s go ahead and bring Wendy on the show with us. Welcome Wendy.

Wendy: Thank you. Thanks for having me.

Jessica: We’ll be talking with Wendy about her experience growing up with her parents who are deaf. Wendy is a speech-language pathologist and listening-and-spoken-language specialist. She works at Child’s Voice. Do you want to talk a little bit about what you do at Child’s Voice?

Wendy: Sure. So, my title is that I’m the EI and School Professional Development Coordinator. But I…so I work in both the Early Intervention and School programs. I coordinate some of the toddler program services, the home-based and center-based services here in Wood Dale. I do see a couple of kids for home-based and teletherapy. And then I help out in the school pulling some kids for speech and work with a lot of the staff on professional development.

Jessica: What don’t you do?

*Wendy laughs*

Wendy: I do a little bit of everything and I love it.

Jessica: Alright, so why don’t we jump into our main discussion. Today we will be talking with Wendy, as we said, about her experience growing up with her parents who are deaf. SO do you want to start by just talking to us about your family and your parents.

Wendy: Sure, so both of my parents are deaf. They both have bilateral cochlear implants. When we were growing up they each had one hearing aid because each of them had one. So between the two of them, they had two hearing aids. My mom had more of a profound loss; my dad was, I think, more in the moderate to severe range. They were both oral, oral deaf is what it…the terminology used to be. And, yeah so I grew up around adults with hearing loss my whole life, a lot of there friends had hearing loss and…and they all, most of them I would say used listening and spoken language but to very varying degrees of success. They didn’t sign. They were just sort of brought up in the hearing world so they lived in…in both the hearing world but also in the oral deaf world, which is in between, you know, the big D Deaf world and the hearing world, so it was a really interesting, I think, perspective on, you know, how people with the same disability can function very differently based on the choices that their parents made for them.

Jessica; Why did they only have one hearing aid each?

Wendy: That is just what they did.

*Jessica laughs*

Wendy: I know it doesn’t make sense to us know. That seems kind of ridiculous because they had significant hearing loss in both ears. I think they aided their better ear? I don’t know why. It maybe was because, you know when cochlear implants first became a thing…it was only unilateral implants and I remember when we started doing bilateral implants, my first thought was, “Well that’s ridiculous because if you’re stimulating the brain on one side, why would you need…if you’re artificially stimulating it on one side, why do you need both sides?”Obviously now we know much better but I wonder if that was the same philosophy with with hearing aids.

Jessica: That is so interesting and then how old were they when they got…you said they both have cochlear implants…

Wendy: They both have cochlear implants. My mom was in her early 60s and my dad in his mid 60s. And they each got both of…they each got their implants sequentially. So my mom got one, then my dad got one, then my mom got another one, and then my dad got another. So we had to go through four surgeries, which was not…not all that fun.

Tatum: What…what prompted them to decided to get them?

Wendy: That’s a good question. I remember…so I was in college at the…undergrad at the University of Iowa at the time, and I remember my mom coming up to visit me and we had a meeting with one of the audiologists at the University of Iowa cause it was a really good cochlear implant program. I think that she either found out about it from a friend of hers or possibly her audiologist and she was just really interested. My mom’s always been sort of…I don’t know…she’s always is looking to improve herself. And she just thought, “I think I really want to do this.” So she met with the audiologist at the University of Iowa. And I remember them being very guarded in their prognosis for her. But, you know, she went through a bunch of pre-implant training and then just decided, you know let’s do it.

Tatum: Was she nervous at all?

Wendy: Yes. Yeah, she was really nervous. She was afraid…well, she felt like she didn’t have much to lose because, you know, she couldn’t really hear anything. So she felt like, “Well I don’t have anything to lose, I might as well try it.”

Jessica; So typically, if you get an implant at a later age in life, your access to sound is not as good as when you’re baby, right?

Wendy: Yes

Jessica: So, what is her…how has that been for her? What’s her access to sound well.

Wendy: So she actually does quite well. She does very well. She doesn’t read lips as much as she used to. I mean she has probably open-set identification. It took a while. I think her first implant took up to a year for her to really become fully mapped and really start to understand what sound meant. Her anatomy must be…I don’t know what her hearing loss…what etiology is…I suspect it might have been some sort of neuropathy because she is such a successful implant-user. And that…it’s…it’s…it’s just odd to me that she’s so successful with it given her long history of auditory deprivation. So she does incredibly well with it but I think she’s an atypical adult cochlear-implant user.

Tatum: Does she prefer the implant on the side where she was wearing the hearing aid for longer?

Wendy: No, now she can’t, now it just has to be both, which is interesting cause one of her ears was never aided.

Tatum: yeah

Wendy: So…

Tatum: That’s what I was thinking…

Wendy: No, she really likes…she doesn’t like when one of them is off. They’re either both off or they’re both on. Whereas my dad has a very clear preference for one them.

Tatum: Is it the side that had the hearing aid?

Wendy:  Yes

Tatum: I thought of one other thing a while back…So the question, the reason I wanted to ask about her being nervous is that I know a lot of families that we currently see, they talk about their fear about losing the residual hearing, or the hearing the child has with their hearing aid, and how that is a big hurdle to overcome when thinking about when they get a cochlear implant. Did that factor in to either of your parents’ decisions?

Wendy: Absolutely. Yeah, my dad, it took him…I don’t know, he got his first implant a number of years after my mom because he was too afraid. He didn’t want to lose what he had, he thought it would change, he didn’t want to go through the rehab process. The implant in his poorer ear first because he was too afraid to lose what he had. I mean to us, it looked like, you don’t have much to lose. But to him, it was really scary. And it took awhile for him to get used to it. He’s still not as comfortable with his implants as my mom is, but it’s definitely a vast improvement over his hearing aid.

 

Jessica: Do you…do they….are they able to like describe to you what it sounds like? I know that’s a question that all of those simulations that go around and parents find them and they always ask, so what’s been their experience?

 

Wendy: So their experience is very different than what our kids are going to experience because they have language first, so my mom always said that it sounds to her like Daffy Duck or Donald Duck or Mickey Mouse. What I don’t understand is how does she know what those things sound like? Um, so I don’t feel like they’re very good…I think everyone’s response to sound is very individualized and there’s no way for us to know what another person…what it sounds like to another person because they’re interpreting…you know they have their own perception of what sound is. My dad says it sounds mechanical to him. But I don’t know that he knows what mechanical sounds like.

 

Tatum: Yeah…

 

Wendy: So I always get…you know parents will ask me that, parents of the kids that I’ve worked with. And they’ll ask me that same question and I’ll say, well it sounds like this to them, but that’s not what it’s going to sound like to your child because they don’t have this prior knowledge. It’s gonna sound much more natural to them.

 

Tatum: Yeah, and then they haven’t gone through the same period of auditory deprivation.

 

Wendy: Mhmhm, right.

 

Tatum: There was a Youtube video I was just watching that one of our audiologists, Dr. Megan, recommended. At ASU, they had a student who was like Single-Sided Deafness, so on the…her Single-Sided Deafness side, she’s been implanted but she has normal hearing in her other ear and they had her match a sample…Have you watched that?

 

Jessica: Yeah

Tatum: It’s so interesting.

 

Wendy: oooh

 

Tatum: Rollen and I were watching it last week. But they had her match this recording to like what it sounds the original to like what it sounds like in her implanted ear and it was very close.

 

Wendy: Cool

 

Jessica: Yeah, it was very cool. It was a lot more, like the recording that they were playing sounded much more natural probably because she was younger than a lot of the studies that they test those on. That’s awesome

 

Jessica: What kind of education did your parents receive growing up?

 

Wendy: They’re both very interesting. My dad actually, my dad lost his hearing to meningitis when he was a year old. To make that story even more complicated he was born in Budapest, Hungary during World War II.

 

Jessica: Oh my gosh…

Wendy: So he was actually with…I don’t know what you would call it, not a host family but like a….He was with a…a non-Jewish family that was taking care of him while all of this was going on and that’s when he got sick. So that’s when he lost his hearing, and then he didn’t move to the United States until he was 13. So, in Hungary there was no such thing as you know a special school for children with hearing loss. It was just like, you go to school and you figure it out. I mean it was communist Hungary in you know the late 1940s. So he kind of just had to go to school and do his thing until he was 13 and then he came here and went to school at Lane Tech, which was…

 

Jessica: Oh yeah…

 

Wendy: You know you guys are familiar with in Chicago. Or no, I’m sorry he went to the Bell School first and then he went to Lane Tech for high school because those were the Deaf and Hard of Hearing programs in Chicago at that time. And that was more of a traditional…he learned to sign there, but there were also kids that were oral. It was just sort of anyone with a hearing loss went to those schools.I think they just did whatever you know any child could learn with because the technology…there was just no technology. I mean there was technology but it was not very good. So I think it was whoever could talk could talk and whoever signed signed. You know they had…they just sort of did whatever they could. So but he’s still like…I…through his schooling there he didn’t join the really big D Deaf community. He always…I think he had enough hearing to learn to speak so that’s sort of where he gravitated.

 

Jessica: And then what about your mom?

 

Wendy: So my mom grew up in New York. Or she grew up on Long Island. And her parents sort of took the denial…we’re just not going to believe that our child and she’s just gonna learn to talk and that’s gonna be. At that time they didn’t want to be different, they didn’t want their child to be different. They grew out her hair very long so it hid her hearing aids. She went to speech therapy you know constantly with a private speech therapist. And then she was just mainstreamed.

 

Tatum: Wow

 

Wendy: She had note takers. She was just mainstr-…she never went to Deaf education program; they just mainstreamed her. And I honestly don’t know how she got through school successfully.

 

Tatum: That’s interesting

 

Jessica: Gosh

 

Wendy: But she did. And she went to college. And..yeah, very, very different time. I mean this was…you know I mean my parents are in their early 70s so this was a long time ago. Things were vastly different.

 

Tatum: Has she ever talked to you about her experience like in speech therapy?

 

Wendy: She still knows the woman’s name…

 

Tatum: Oooh

 

Wendy: …who was her speech therapist and she…she’s…I’m sure she is long gone by now. Rest her soul.

 

Tatum: It’s just interesting. Maybe we’ll be remembered by our kids.

Wendy: Yeah, right. Yeah, so she…she credits that woman with teaching her how to speak. And with her parents for just…you know it sounds really awful to us but just sort of not accepting the fact that she was deaf. It’s like, nope, she’s just gonna learn to talk anyway. And again that makes me wonder exactly what the etiology of hearing loss is because I just don’t know how it’s possible. That if she had a profound hearing loss and one hearing aid that she learned to talk.

 

Jessica: Yeah

 

Wendy: That’s just sort of incredible to me, which is probably why I do what I do now.

 

Jessica: Yeah, how does that like impact what you do now? That’s a big question I guess.

 

*Laughs*

 

Wendy: I think it really, number one makes me have very high expectations for our kids. My first year out of grad school I worked in the Chicago Public Schools and…in the…in some of the Deaf and Hard of Hearing programs and I was so…just distraught by how low the expectations were for the children in those programs. And when I got here to Child’s Voice, it was like…this is what I’ve been looking for. This is…these people believe that kids with hearing loss can really do this, they can learn to listen and talk. So I feel like understanding what my parents went through has given me, like I said, a lot of hope and a lot of…I see how resilient kids and adults are. And how much they can learn. So I think that’s…that’s really helped me to sort of see the light at the end of the tunnel with really young kids.

 

Jessica: Can we shift gears a little bit and talk about what it was like to be raised by deaf adults?

 

Wendy: Sure

Jessica: Is there anything that stands out when I say that? Like do you have go-to stories about this (laughs)?

 

Wendy: Yes, do you want the edited versions or the unedited?

 

*Wendy laughs

 

Jessica: Talk first overall what stands out to you What do you remember, what challenges and positive things, and you’ve already mentioned that you have a lot of family friends who were also deaf or had hearing loss, so that probably shaped your…like worldview a lot.

 

Wendy: Yeah. I mean I hope it’s made me more of a you know empathic person and really, I think it has. Um…yeah, I think it has.

 

Tatum: We think you’re pretty empathic.

 

*Jessica and Tatum laugh*

 

Wendy: Thanks. I try. Yeah, I mean there were a lot of positives. I didn’t know any different. I mean like these were just my parents and I started…I do remember specific moments in my life where I found out that it was different and that was like…ohhhh, this is not how everybody’s family is like. I remember being…um…my mom was with me on a field trip and we were at some sort of observatory and it was all dark and it was really quiet. And everyone was looking at something and it was super dark. And my mom said something to me and she was so loud.

 

Tatum: Yeah…

 

And it was just like completely unaware that nobody else was talking and I was like, “MOOOOM, be quieettt.” Like I was sooo embarrassed. And it was just like this moment that it really stood out to me as like, ooooh, they are different. You know my friends would come over and our you know lights would flash when the doorbell rang or the phone rang, and the first time friends would come over, they’d look and say, “Whaaaat”s that?” Because they speak…people when they meet them sort of assume that something is different but they don’t know quite what. And I think my friends growing up sort of, until they got to know me better didn’t know that either. Yeah, I mean we would…another thing that always stands out to me is me and my sister making phone calls for them and being such brats about it.

 

*Jessica laughs*

Wendy: When they would say, would you please call this credit card company because they can’t talk on the phone. And we were like “ugh, I don’t’ want to do that.” Like, (sighs), which I know every teenager is bratty but you know we definitely…definitely were like at a restaurant when, you know we’d see a waiter or waitress struggling to communicate with them, we would jump in and the adult. Be like, “She wants this.” Or “You’re not communicating with her correctly” like we would be the advocate for my parents. SO I felt like it really taught me and my sister to stand up for other people, it helped us I think be really mature.

 

Jessica: Did you have to learn those like self-advocacy pieces from your parents or did you just kind of see them struggling and understand the other perspective?

Wendy: Yeah, I don’t think we learned it from them because they were not very good advocates for themselves. I think we learned the hard way from seeing them miss things, miss information, not be able to communicate with others, and then we sort of stepped in. I think me a little bit more than my sister would step in, “She can’t hear you, you need to look at her when you’re talking.” Or, “My parents are deaf. You need to look at them.”

 

Jessica: Yeah

Wendy: I’ll never forget my dad, it was his second implant…second implant surgery and the resident came into the room and he started talking to me. The doctor, who’s performing surgery on my father, started talking to me about what the surgery was going to look like. And I looked at him and I said, “I’m sorry. I am not your patient. My father is your patient. You’re an ENT surgeon. You need to speak to your patient.” I was just so angry and the attending, the…his…I guess the attending or…whatever you call the doctor that’s above the resident came up to later and apologized. And you know this is something we need to work on with young doctors because they don’t realize you know how to communicate with their…with their patients.

 

Jessica: Wow

 

Wendy: Yeah, it’s definitely…and again I didn’t learn from their example because they were not…and still to this day are not good at advocating for themselves, which is frustrating.

 

Jessica: Do you get mad at them about it?

 

*Jessica & Tatum laugh*

 

Wendy: Yeah! Absolutely.

 

Tatum: Especially being on the other end where we’re teaching self-advocacy skills to our kids.

 

Wendy: Right, right, our kids are…

 

Tatum: It’s frustrating.

 

Wendy: …and when I say our kids because we work with them so we feel like they’re our kids….

 

*Tatum & Jessica laugh*

 

Wendy: …but they’re in such a different world and it’s you know it’s so important, I’m so proud that we have a self-advocacy course at Child’s Voice that all the P2 kids go through. It’s really important. I feel like my parents have missed a lot, opportunities, communication with other people and I don’t want our kids to miss that.

 

Jessica: Yeah, did your parents push you toward working working with kids with hearing loss….

 

Wendy: No, never…

 

Jessica: …or were they sort of removed from that journey?

 

Wendy: My mom took, honestly my mom brought me here to Child’s Voice when I was in college because she wanted me to see it. But that was the pushiest they ever got. They’ve always been really…laid back about letting us find our own, our own path.

 

Jessica: Do they, do they ask you a lot of questions about work and they…it sounds like they are pretty supportive of whatever you want to do, but this must hold a certain place in your heart certainly and theirs as well.

 

Wendy: Yes. They love hearing about what I do and…you know my mom volunteered at Child’s Voice…

Tatum: Oh, I didn’t know that.

 

Wendy: She loves the kids here. They love…I mean they just…they’re always so impressed by the kids here…and they’re so proud of the work that we do, and they’re so grateful that these opportunities are here for kids that that weren’t there for them. I think they feel that it’s important for younger kids to meet adults with cochlear implants too and…yeah, they love hearing about everything we do here. They’re really proud of it.

 

Jessica: That’s awesome. That’s good to hear.

 

*Jessica laughs*

Jessica: As people who work here, that’s good to hear.

 

Wendy: Yes, they love it.

 

*Jessica laughs*

 

Jessica: Well let’s maybe wrap things up there. Thank you Wendy so much for joining us. This has been a really good discussion and I didn’t know a lot of this so I’m happy that we have it all recorded now.

 

Tatum: Yeah, I feel like we all have learned a lot.

 

Wendy: Thank you, thanks for having me.

 

Tatum: yeah, we’re so happy you were on.

 

Jessica; Let’s, just before we’ll wrap up in a second. But we just want to say to any listeners, we’d love to hear from you. Have you grown up with parents who are deaf or have hearing loss? What are your thoughts about everything Wendy has talked about? Please feel free to reach out to us. We are on a variety of mediums. *laughs* Do you want to…

 

Tatum: Yeah, sure. I’ll go over them. So as always we’re on instagram and twitter, I’m at @TatumFritzSLP and you can find Jessica @JessicaBrockSLP. You can also email us at podcast@childsvoice.org and find episode show notes and archived episodes at Child’s Voice’s website, which is childsvoice.org.

 

Jessica; Yes, and if you’re interested in learning more about Child’s Voice the program, we are on facebook and twitter and instagram with the handel @childs_voice, no apostrophe. So again thank you so much for listening and we’ll see you next time.

 

Tatum: Yep, bye.

 

Jessica: Bye.

 

Wendy: Bye

 

Jessica: And from our friend’s at Child’s Voice…

 

Child’s Voice Students: BYE, THANKS FOR LISTENING.