Host Crystal Hand interviews her deaf friend Holly Ambrass where they discuss her life as a CODA (Child of a Deaf Adult), a deaf woman and a mother of a hard of hearing child. In this episode Holly talks about what it was like growing up in a generational deaf family and her journey of her progressive hearing loss that ultimately led to her getting a cochlear implant as an adult. Crystal and Holly examine an array of topics including the process of getting a cochlear implant from surgery to post activation, the challenges she faces in her job, as well as what it is like to be a single mom raising a hard of hearing daughter.
This podcast is produced and owned by Crystal Hand and not associated with any other company, business or government entity. "The Other Side of Deaf" podcast and associated websites and social media pages represent the opinions of the host and her guests on the show and do not represent or reflect the opinion of any organization the participants are employed or associated with. The content here is for information purposes only and should not be used for medical or legal purposes.
Host Crystal Hand interviews her deaf friend Holly Ambrass where they discuss her life as a CODA (Child of a Deaf Adult), a deaf woman and a mother of a hard of hearing child. In this episode Holly talks about what it was like growing up in a generational deaf family and her journey of her progressive hearing loss that ultimately led to her getting a cochlear implant as an adult. Crystal and Holly examine an array of topics including the process of getting a cochlear implant from surgery to post activation, the challenges she faces in her job, as well as what it is like to be a single mom raising a hard of hearing daughter.
This podcast is produced and owned by Crystal Hand and not associated with any other company, business or government entity. "The Other Side of Deaf" podcast and associated websites and social media pages represent the opinions of the host and her guests on the show and do not represent or reflect the opinion of any organization the participants are employed or associated with. The content here is for information purposes only and should not be used for medical or legal purposes.
Crystal: Hello, welcome back to The Other Side of Deaf. This is Crystal Hand your host. Every episode I try to give a different perspective to the topics surrounding the deaf community, talking about things like education, culture, technology, and language. But my favorite and probably most important episodes are the ones where we hear the stories and perspectives of actual deaf and hard of hearing people. I never want my audience to forget that although there are universal threads of similar experiences, each deaf story is unique. Last season I had my dear friend and deaf mentor Stephanie, as well as my son Luke, a hard of hearing teenager, share their experiences. If you haven't listened to those episodes, I encourage you to go back and do so. I feel it is important we continue this trend of going back to our deaf center. So today, I have Holly, another deaf friend. She is here to talk about her life as a successful deaf and hard of hearing person. Holly comes from a generationally deaf family, is deaf herself and has a hard of hearing daughter. She also made the decision as an adult to get a cochlear implant. Holly is a teacher at a neighborhood school, a certified nutritionist, a previous swim coach, which is how I met her and most importantly a mom. Her life experiences are completely different from the previous guests I had on earlier and there are so many things to talk about. So, Holly let's get started.
So welcome Holly, thank you for being here.
Holly: Hi thank you for having me. I'm looking forward to this.
Crystal: Okay, so let's get started right away. So first of all, let's talk about you a little bit, tell us a little bit about yourself so my audience can get to know you.
Holly: I'm in my mid to late 40s. I have a daughter; she is 16 years old so it's just the two of us and we have a cat and a dog. I'm a teacher. I teach elementary life skills support and I have various hobbies that I like to do on the side and that's about it.
Crystal: So, what do you do for fun?
Holly: I like to read. I'm a big reader. Um I do crafts so I'm pretty crafty uh sewing and other crafts like that. I'm not very artistic as it comes to like painting and drawing and that kind of thing.
Crystal: You knit though, right?
Holly: I can do some hand knitting. I don't know how to knit or crochet with needles. I don't know how to do that. I do know how to sew so and I do have some sewing projects that I need to work on. I do a lot of journaling. I like to journal so it's on my agenda for this weekend. I do like doing other things like um walking and hiking. I've been getting into the hiking the last few weeks or month or so.
Crystal: And you're also a certified nutritionist, right?
Holly: I am a certified nutritional therapy practitioner. I will admit that I don't use it very much but it's nice knowledge and I am familiar with a lot of things in that area.
Crystal: Okay and then you've also done a lot of CrossFit in the past?
Holly: I did CrossFit for several years. I started in my uh late 30s so I think I did CrossFit for about eight to ten years. I just recently stopped doing it for various reasons. It is fun. I did enjoy it. It is very challenging on the body but anybody and everybody can do CrossFit regardless of your size, shape, or experience but it's fun.
Crystal: So, I wanted to have you on this show because you have a very different experience than the other deaf people that I've had on here. So, you come from a multi-generational deaf and hard of hearing family. So, tell us about that. Who in your family has a hearing difference?
Holly: So, I am one of five children. I'm the second oldest of five. My oldest sister has hearing loss, I have a hearing loss then my two sisters that come after me they have their normal hearing and then my brother who's 10 years younger than me, he has a hearing loss as well. Of the three of us my hearing is the most severe. Now my older sister she has two daughters her older daughter has a mild hearing loss and then myself my child has a mild to moderate hearing loss. My brother does not have any children. My mother had hearing loss and my mother's brother and then my grandmother she also had hearing loss so there's various members on my mom's side of the family.
Crystal: Okay, so is this obviously genetic then?
Holly: It is genetic.
Crystal: okay and do they know the genetic cause? Like is it Connexin 26? is it?
Holly: Not that I'm aware of.
Crystal: Okay
Holly: Now I had an opportunity when I first got married to get some genetic testing done to see the chances of my children having a hearing loss and more information but I chose not to because it didn't matter to me if my child had a hearing loss or not. It was I was okay with it. But I do know that it seems to be decreasing by generation.
Crystal: Okay,
Holly: The severity of the hearing loss is decreasing by generation. So, they have predicted that by time my child has a daughter or has children, her children might not even have a hearing loss.
Crystal: Okay, so when we were speaking before you talked about how your mother actually got a cochlear implant when they first came out so what was that like for her?
Holly: It was very different for her. She and again I don't know when Cochlear implants first came out compared to when she got one but I know it was still fairly new when she got her implant. So, she got hers I would say maybe 25 years ago.
Crystal: Wow okay so they they've come a long way.
She had this notion that it was just gonna fix everything in her life and it was she was gonna have perfect normal hearing like everybody else does and that wasn't the case. So, she personally if you would ask her today, which you can't, but if you would ask her today, she would tell you that she regrets it and she doesn't like it.
Crystal: Okay, and she was implanted as an adult?
Holly: Yes.
Crystal: Okay, And so were you which we're going to get into a little bit later. So, growing up with siblings that had hearing loss, do you feel like it made a difference in the fact that you had somebody at home that understood what it was like?
Holly: I don't know if I've really ever thought about it that way? I think it was just how it was. I don't really ever remember sitting down and having conversations with my older sister about our hearing losses and how it affects us and it changed us or made us who we are. I don't really remember that. I do remember there being times where my two sisters that are hearing having conversations with them and saying stuff like you don't understand what it's like. You know, it's easier for you. So, I remember conversations with my hearing sisters and how it's different but I don't remember ever really you know having the conversation with my sister with the hearing loss and we were just brought up with all being treated the same. And if we needed an accommodation we had it.
Crystal: So, you didn't feel different or out of place in your own family?
Holly: No, I felt different and out of place in the aspect that mine was obviously the worst so there were things that even my older sister with her hearing she was able to do easier or not as difficult as me.
Crystal: And the reason I asked this is because, that is something that I feel a lot of deaf and hard of hearing kids don't have. Is that most deaf and hard of hearing kids are born to hearing parents. Most of them are the only deaf or hard of hearing person in their family. And I've said in the past that with my kids, I have felt like they were lucky that they had each other because for us it was this is a norm for us. Right, they're not treated differently they both understand when they each have a hard day and say I felt really left out or whatever they're able to connect with each other and kind of feel like, oh there's somebody else that understands. And I think that's something that multi-generational deaf people don't have to struggle with as much as with kids that are growing up in a household where they don't know anybody that's deaf. Would you agree with that?
Holly: I think so. I think because we all just live that way um with my mom and then my sister, I mean we just had things in our house and our lives that just came because that's how we were. Like we always had like the telephones that had the additional volume control on the hand or um attached to the side of the phone. I mean that just came because that's what we all needed so we just had that in our house. This was before you know closed caption was on every TV and everything automatically and I didn't have closed caption because at the time I remember my dad saying well I'm not paying for that. And this may sound funny at the time but what we did was in order for my mom to watch TV and hear everything she had headphones and we would have this you know really really long cord that would stretch across the living room for her to sit with her headphones on just to have the volume up on the TV. And I remember I would want to use those sometimes because there were times where I couldn't hear you know what was said on TV or I'd have to ask somebody you know what was that just said.
Crystal: I think that's a really good thing to point out on how far we've come and how important closed captions are. Because I know that with our family, we don't go to the movies anymore because closed captions are difficult especially when they have the thing that has the arm that comes across. Like it's so awkward. And even the glasses, like my daughter doesn't mind them but Luke hates them. He's like it's weird. I feel like I'm watching a movie in like three different places. And so, we watch everything at home because we can put closed captions on but there are still movies if you like pop in an old DVD that won't have closed captions and for us it's a non-starter. If it doesn't have closed captions, then we don't watch it because of that very reason. And I think it's such a good thing for you to point out that this was not always around. I think people this generation forget that deaf people have been dealing with a world where their technology hasn't been capable of helping them in that aspect. So, it's so interesting that you had to pay for closed captions before.
Holly: And I went to the movies when I was a kid and I was growing up. And I think it was just because that's what we did. But I couldn't tell you if I was able to hear everything. I probably wasn't able to. Now my hearing when I was a kid wasn’t as nearly as severe as it is now. I mean it got worse as I got older.
Crystal: Right. So, did you ever go to deaf school or did you always just go to a regular neighborhood local schools?
Holly: I always went to a regular school. I did not go to a deaf school. I went to a regular public school. My older sister and I we were the only people that had hearing losses there. I didn't meet another person outside of my family with a hearing loss probably until I was a junior or a senior in high school. So, it's fairly new and it was I guess it was good that it was a small school. My graduating class was 110 people. We were a large class. I remember there were times where I've occasionally had a conversation with my older sister - what did you do when you had this teacher? And I'm having a hard time but my older sister was so different than I was with how she handled things.
Crystal: How so?
Holly: She was more matter of fact. She came across as more confident. I think in my mind, more confident and again her hearing wasn't as bad as mine so she didn't have the same difficulties as I had and she didn't really let people know. So, I think she really kept it to herself a little bit more than I did. Like I wasn't afraid to speak up and say more than she did and I also had a tendency to take them off and hide them.
Crystal: And well okay, so let's talk about that because one of the things I hear the most with some families that I work with is when our kids get to be like middle school / high school age, that's when that happens. When they start to hide their hearing aids. Some of them will say straight up I don't want to wear them anymore. It's embarrassing. Were you like that?
Holly: So, if I'm remembering correctly my sister started wearing hearing aids probably around three four years old. So, I think she had a lot of that language development before they realized she needed hearing aids. Me- I started wearing them much earlier at the age of two. So, they discovered my hearing loss around the age of two because I still wasn't talking. So I received a lot of early intervention services that my older sister did not receive because she didn't need them at the time and I needed that extra help with the speech. And I remember a lady coming to my house and working with me and I remember being told stories that I would hide my hearing aid when I knew she was coming because I didn't want to do this work. I guess there were several situations which I put them in pockets of sweaters and they went through laundry and you know stuff like that.
Crystal: Which happens all the time.
Holly: Yeah, that's a given, but I think I remember hiding them at such a young age because I didn't want to do the work with the lady that came to the house or when I went to preschool. But as I got older in the middle school and the high school age, I was okay with it. I will say I fought around the middle school high school age when they started telling me I should be wearing two hearing aids. I always wore one and I fought that. I didn't want to wear two.
Crystal: Why?
Holly: Why did I need to. I mean it didn't really bother me to that extent that I needed to.
Crystal: So, you are comfortable with what you heard?
Holly: Yes. And I didn't like the way it felt. I thought it felt very weird in the other ear and that was my right ear. I didn't want to wear one in my right ear. I didn't like the way it felt. I didn't like the way things sounded when they, you know, were trying to push that on me. I do also remember and I think it started in late elementary school they wanted me to wear an FM system you know. I had the teacher would have to wear you know this big thing around her neck and I'd have to have this big clunky thing on me and I remember fighting that and saying no I won't do that.
Crystal: Yeah, and now it's a little better. They still have to wear something around their neck but it's not as big and then as far as the person with hearing loss they only wear something on their hearing aids like boots so it's a little less noticeable but it's still noticeable. And I think that there's a lot of preteens and teenagers that feel that way - of I don't want to be noticed like that so let's just hide it. I know my son had somebody that he had a few classes with that had hearing loss and she actually denied her hearing loss completely and would not wear her FM. Would not wear her hearing aids nothing. Now I don't think her hearing loss was as significant as Luke's, but his response was why would you do that? Because he was the type that just didn't care. Do you find that it's more prevalent in girls maybe that they don't want to be noticed like that?
Holly: I don't know. My daughter is okay with being noticed. She did fight having an FM system. She did not like that. But here's an example we just had an appointment for her at Hershey and she's due for some new hearing aids and she's 16 almost 17 going off to college soon and she's had her aids have been colored over the years. Pink, purple, you know, glitter swirl molds. Like so she always wanted that. So, when we had our appointment, I think it was just two weeks ago maybe, I said so you're gonna get like natural-colored ones this time because you're going off to college soon right? She says No. So, she still wants like this purple aid and you know this swirly mold and even the audiologist was like so you're okay with that? She is like well when I'm not okay with it my hair does cover it up but for the most part I don't really care. I'm like okay because I'm thinking you know she's gonna go after college. Now, she still might change her mind when she gets to college but she doesn't care if people see and notice.
Crystal: So, Samantha was that way where she said to me “well everybody knows I'm deaf so why am I trying to hide it”.
Holly: That's how I was but people in my case would forget. I have been told so many times over the course of my life, “oh I keep forgetting “
Crystal: Because you speak well.
Holly: Because I speak well. Which I say years and years of torture of speech therapy which I absolutely hated in elementary school.
Crystal: Yeah, I think all deaf kids do. Samantha hates it, Luke hated it they all hate it. But that is a thing to kind of think about is that I've heard from many deaf people including my kids that when you speak well people forget you're deaf and then they forget to accommodate you which makes it even harder. So, sometimes people that don't speak at all sometimes they have it a little bit easier as far as requesting accommodations because people are like oh well, they can't do this without it. But when you speak well then people are like well, they're fine. If they can speak, they can hear. Right.
Holly: Or they think you're not telling the truth when you tell them that you're deaf and you can't hear and they look at you like you have three heads and you're lying.
Crystal: Right
Holly: Why would I lie about that?
Crystal: Right exactly
Holly: It happens quite often.
Crystal: So, your family has always been speech and spoken language.
Holly: Yes, there's no sign language in my family.
Crystal: And have you ever used like cued speech or anything like that?
Holly: We are big lip readers in my family. That's how my mom always functioned and survived. So I think for lip reading for me I think it came very naturally but I do remember working on it with the lady that came to my house when I was you know a toddler under the age of five type thing.
Crystal: So, let's chat about that for a little bit. So, your family was never involved in the Deaf community. You said that you didn't meet anyone else that was deaf outside of your family until you were in high school. Why did your family shy away from that? Like because typically generational deaf and hard of hearing families tend to gravitate to the deaf and hard of hearing community. So, what was different about your family? Why did they shy away from that?
Holly: I don't know if I would say we shied away from it. From my understanding in my memory, my mother grew up in a very very small town in northeastern PA in a trailer. So there really weren't any services or people or anything like that where my mother grew up and the only people that wore hearing aids and were my mom and her brother and her own mom so I think it was just my mom just didn't know. She just was not aware because of how she was brought up. And so, when it came to us and she married my dad who is very firm, very independent, very much a city boy and my dad is hearing. And I remember him saying well you live in a hearing world you have to function in a hearing world. You need to know how to survive and live in a hearing world and them just making the choice that this is how they want us to be brought up. My mom didn't know sign language. My mom didn't really know anybody else outside of her family and when I started expressing an interest in it I think it was different for them.
Crystal: How do you feel about that argument? Because that's something that a lot of hearing parents have is “we live in a hearing world you need to learn how to function so we're gonna keep sign language or things like that away from you." And I know for my husband and I like we have kind of the attitude of you do live in a hearing world you need to learn how to communicate in that atmosphere. You need to know how to read and write in English. Because ASL is not English and there are several deaf people that I've run into who do not read and write English very well which can be a hindrance when you are an adult and you are in a professional field. But my husband and I also feel like we need to participate in their language when it's easier for them. So, for example, when we go out to a restaurant, we will switch over to sign when it's really loud just because it's easier for us than trying to repeat everything all the time. So now, as an adult how do you feel about how you grew up? Do you feel like that was something that was helpful to you or do you feel like you wish it was different?
Holly: A little bit of both. I remember in college my initial thought was I wanted to be a deaf ed teacher. I wanted to be exposed to this more. I started learning more my junior and senior year in high school. So I went to college where I can major in deaf ed and I wanted to work because I wanted to be like oh, I want to work with people who are deaf who didn't have the experiences that I have. I can teach them and I became friends with a lot of people who were deaf in the Deaf culture. And as I started learning more, I remember going back to my parents and being like why didn't you expose me to this? Why didn't you let me learn sign language? And I remember both of them being very upset with me because I was expressing that I wanted different. I wanted to have that experience. You didn't provide me with that experience. And I remember them, both of them, being very angry thinking, they made the wrong choice and the wrong decision and I'm questioning how they grew and brought me up. And it's not that I questioned that it was more of there's a part that I never knew about. I was never exposed to. You didn't give me that choice, that option. So, looking back now, again 20 something years after college, I think I would have liked the experience of both. I think I would have liked knowing the sign language. But at the same time, I didn't do that to my child. I tried initially and then I just felt like with my child I didn't have the support of my husband at the time to do that with her. And again, her hearing wasn't nearly as severe or significant as mine. So then maybe I made a mistake. I don't know. Maybe you know not exposing my child to that much.
I don't regret it because I'm able to function independently. I'm able to read. I am able to write. I went on to college, you know. I have my Master's Degree. And would I've like to learn a little bit more.
Crystal: Maybe more part of the culture?
Holly: A little bit more? I feel that I when I learned more in college it was kind of cool it was kind of nice but I also realized I don't 100 fit in the Deaf culture and I never will.
Crystal: Right. So, let's get into that. I did a podcast episode with my son last season and he expressed the same thing. He said I'm not deaf enough to be part of the deaf community and I'm not hearing enough to be in the hearing community.
Holly: Exactly.
Crystal: So, I don't fit no matter where I am.
Holly: Exactly
Crystal: And so, you feel that it's the same way for you?
Holly: Yes, if I feel that if I try to be more of the Deaf culture in the Deaf Community I would have never been totally accepted anymore. okay because of several reasons. One I'm oral. I'm not Sign Language. Sign is not my primary language.
Crystal: That's that's a big one!
Holly: That was made very evident to me very quickly.
Crystal: Yes so, I have to say and again I'm probably gonna get a lot of people who are gonna you know crucify me on the internet for this but that's a major problem in the deaf community of this discrimination of people that are deaf that actually speak. I know for Samantha, sign language is her primary language but she speaks English and she does very well with it. She's learned how to communicate both and we say she's fluent in both English and ASL but she has had other deaf people tell her you're not deaf because you speak. And that really upset her because she felt like this is supposed to be my community, this is supposed to be the people that get it and I feel very much a part of this and having a portion of them reject her and reject her family because Luke does not like to use sign language so they reject him almost outright, that really bothers her. Because she's very close to her brother. So, I think that's a huge thing that we should point out is that that's such a bad thing that is happening in the Deaf Community. Is that if you want to be welcoming and have this amazing community then you should be welcoming right. I mean deaf people speak sign language and they speak English and some of them use cued speech and some of them use completely different types of communication modes. And I feel like as a culture you guys would be so much stronger if that was more unified. And of course, this is coming from me a hearing parent, so I don't actually have a say in this but it is something that is worth noting. Is that there's an entire group of you that are just like you. That feel that you're not deaf enough to be deaf you're not hearing enough to be hearing and so you're just kind of this lost sea of people that is trying to figure out where you fit in. That's crazy.
Crystal: So, your hearing loss has progressed over the years and then you as an adult decided to get a cochlear implant. So let's talk about that progression. So this is something that happens a lot with deaf and hard of hearing kids is that it starts out at one and then it progresses to a loss that's more significant. What was that like for you? Was it scary? Did you know it was coming?
Holly: So, like I said I remember I refuse to wear a second hearing aid when I was a teenager. I remember being in my early 30s and the audiologist was like you know Holly your hearing has really gotten significantly worse you need to wear a second hearing aid. You're at the point now where you don't have a choice. And because of my job as a teacher, I teach elementary kids how to read. I kind of need to be able to hear you know the sounds and the words and stuff that they are saying. I need to be able to hear my students. So, I remember fighting it a little bit but I started wearing a second hearing aid. It was an adjustment. At this point, I remember I started talking on the phone less and less. The phone is becoming more and more difficult. I you know I'm married, my husband's doing all my phone calls for me. I'm avoiding the phone. Certain other things, I’m using closed captioned now. So, they're just things that are starting to change that you know when the second hearing aid came and I'm not hearing things like I used to. Then it got to the point I remember a few years later I have to go back in again. Am I hearing things right? Let's get the AIDS adjusted and my audiologist said to me since you realize there's probably going t o be a time when hearing aids aren't going to work for you anymore.
Crystal: And how did you feel about that?
Holly: I was kind of like really? I don't want a cochlear implant because I remember going through my mom getting hers and I was against getting a cochlear implant because number one it was more of I still felt like I had that foot in that Deaf cultural door. Because of the Deaf culture at the time and again I'm not very knowledgeable in the Deaf culture, how it is today compared to you know 10 20 30 years ago, so I’m not criticizing or judging anybody in the Deaf culture by any means, but at the time it was in the Deaf culture you don't get a cochlear implant. You accept your hearing for what it is. You don't try to fix what's not broken. And they look at it as if you don't have hearing, you're not broken. It's fine and I accepted that. That that's who I was and I remember I never wanted normal hearing. I was always the one that if I had the option now I would never choose to have all of my hearing. I was totally okay with going 100 deaf even as a teenager and my 20s. And my mother never felt that way, but my sisters my sister and my brother never felt that way. So I felt differently. That I was totally okay losing my hearing, never having that. So when my mom chose to get her implant, I remember being very angry with her. Why couldn't you accept who you are and hearing for the way it is? Why are you trying to change this? Why do you want to fix this? What is wrong with your hearing? And because she never accepted her hearing loss so when the audiologist over the years is telling me you know Holly your hearing is getting worse, we can see your needing a cochlear implant within the next 10 years. Just keep this in mind we'll keep doing what we need to be doing. And over the years you know I get a new hearing aid, I get a more powerful one. They're adjusting it and it then it got to the point where she's saying we can't give you a more powerful hearing aid. Your next option is a cochlear implant. And I was like oh okay. I have a decision I need to make. By this point I'm divorced. I don't have a husband or somebody else to help me hear things in public. I don't have somebody to help me make those phone calls. I have a young child I need a raise on my own. I don't have somebody there to help me. I'm teaching. I'm struggling with being able to hear my students. Being able to teach them what they need to know. I need to be able to support myself and my child independently. I don't have a choice. So the way I looked at it to get the cochlear implant I didn't have a choice in order to keep the Independence that I'm learning and used to. And I didn't want to have to depend and support on somebody else in order to keep my job, in order to support myself and my child. I needed the cochlear implant.
Crystal: So, you had to put aside your feelings about culture in order to just survive.
Holly: In a way yes. I think looking back and even now I don't regret getting the cochlear implant. I really don't regret it by any means. If I had a strong solid marriage with that support system with not having to keep my job or maybe have the option of looking for something different or having a different job, yes I would like to have not gotten an implant. If I had that choice of not having to get one to live that way I would have been totally okay with not having an implant and being deaf.
Crystal: So, let's talk about the cochlear implant process. So you're the first guest that I've had on that's gone through it which I'm actually really excited to talk about because a lot of hearing parents they are fed that this is a fix of hearing loss. So they're told that oh your baby's deaf so get a cochlear implant and it'll be okay. And to some degree I feel like that's very misleading to a lot of families. So as an adult I think that you're great at being able to talk about what is the process like from your perspective. So, first of all let's talk about the surgery. So the surgery itself what was that like? How long does it take to recover?
Holly: So, the surgery in it self and recovery was very different for me than it was for my mother. It's an outpatient procedure for me. I went in that morning I was home that evening. Yeah, it was that quick.
Crystal: Now it's like that for kids as well?
Holly: I don't know. It could be because I'm an adult, I don't have that information I couldn't tell you that. I just know as well technology has advanced so much so has medical and I think there are a lot of things today that are more outpatient procedures than they were five years ago. So I remember going in the morning I had it done, up you know in Hershey. My sister took me and if I'm remembering the procedure correctly basically what they did was they cut behind my ear. Oh, and I had the option I chose to only have one implant done even though I was advised against it. I was told to have bilateral both ears done and I said no. And again, I think that's part of that little piece of me that's in the deaf side. I want to keep some little natural hearing that I have left. I always want that even if I end up losing all of that natural hearing. That's fine by me. I do not want two implants and I think that was part of my little deaf community part. That little toe that I may have in that door there. I was very against two and I was informed that if I choose one now, I will never be able to get a second one. Anyways, so the procedure was they cut behind my right ear to peel the skin back on my head. Drilled a hole in my skull to place the inside part of the implant in my head so the wires can go to the cochlear and then they stitched me back up.
Crystal: So, what was it like the healing processes? Was super painful?
Holly: It wasn't as painful but I feel I have a little bit of higher pain tolerance than some other people. So, I had this cover that I had to wear over my ear that wrapped around my head. I had some bruising along my jaw. I don't remember being in a tremendous amount of pain. I mean I had some pain obviously I had some bruising but most of the bruising that I had was more from them they told me it's from the breathing tube and the other stuff. I mean I just remember black and blue marks and my lip being bruised but they tell me it's more from the breathing tube and stuff. The scar and the stitches and everything behind my ear look pretty gross in my opinion. I was very tender and I only had to wear that thing over my head for a day or so and I remember having to sleep in it. It was hard to sleep. It was tender. I was bruised and I had to let it heal for six weeks. And it wasn't as bad. I mean there were things that did hurt talking was a little painful for a little bit. Just with the jaw laying on that side. Chewing food for a little bit. It almost reminded me when I got my wisdom teeth out. I started experiencing other things though. I did experience uh some dizziness for a while. That I'm still dizzy. I still have dizzy issues today. Contributing back to that I don't know if that's true or not. But I don't remember the healing process of the surgery actually being difficult.
Crystal: So, you heal for six weeks, then you get mapped. So, you go six weeks with no hearing in that ear.
Holly: Yes except for that little bit that I can hear in my left ear with my hearing aid.
Crystal: So, if someone gets a cochlear implant in both ears, that's six weeks there's no sound?
Holly: Correct. Because when you get a cochlear implant, it does kill any natural hearing that you have.
Crystal: So, let's talk about the mapping process. So, what's that like?
Holly: Very tiring. It was very exhausting. Sitting there, well which is louder? Which is softer? which do you like better? What do you hear? What do you not hear? I mean it was very, it was exhausting. I just that's the biggest thing that sticks in my head it was exhausting. It still is. I was just mapped again about a month or two ago it's still is. It takes hours. And I remember initially it was several appointments over the course of several months. It was it was a tiring, exhausting. It was a lot of work.
Crystal: So, it's not like you get implanted, you go in for one appointment you get mapped and then you're good?
Holly: Then magically boom you hear everything? No, it doesn't, it didn't work that way for me.
Crystal: Okay, so when you go and get mapped then you go back again and refine it and refine it and refine it over months over time.
Holly: Yes, so again, I don't know if it's going to be different for a child but for me as an adult, I had to relearn how to hear everything. Everything sounded the exact same.
Crystal: So, it's very monotone?
Holly: Have you ever watched Star Wars?
Crystal: Yeah
Holly: You know R2D2 and you know how R2D2 talks with all those beeps and blips? That's what it was for months.
Crystal: So, then you had to retrain your brain to understand that quote language of digital language?
Holly: Not only the language but any other sound. I couldn't tell the difference between the water running in the sink and my daughter calling my name.
Crystal: Wow.
Holly: They were the exact same sound. I couldn't tell the difference between anything. Everything sounded the exact same. Everything was beeps, blips, squeals. Everything. And I had to ask so many times what am I hearing? What is that? Um it's like you teach a toddler. This is what this sounds like. This is what a bouncing ball sounds like. That's what a bird sounds like.
Crystal: Was it annoying for you in your head?
Holly: Oh yeah.
Crystal: I had families tell me that, and maybe this is the reason why they tell you the younger you are when you implant the better,but I've had a few families tell me that after they've had their child implanted they go through this period where they're very fussy or they're very irritable. And so maybe that's why.
Holly: That would explain it
Crystal: They're just hearing these beeps and sounds.
Holly: Yeah, I was coaching at that time when I was first mapped and everything. I was coaching when I didn't have the implant. I was coaching when I had the surgery.
Crystal: So, how long did that last and how long did it take you to get to the point where now you're understanding speech and you're doing well and you're able to kind of not hear those beeps and sounds and it's more natural? How long did that take you?
Holly: A long time. I would say good year. Six months to a year. Because I would be in a new environment a new different environment and I would be like what's that is. Where I would hear a different song on the radio and I'm hearing those bips and those beeps. Or I would just be in a different place. Okay what's that? Even recently as of a year and a half two years ago, I was in Pittsburgh visiting some friends of the family staying with them. I was brought up I learned how to play a piano as a child. So, even as a child with hearing loss, I swam. I played the piano. I was in the band and I did all that stuff. And at this house here's a piano. I have not been in a room with a piano. That was my first time since getting my implant.
Crystal: And it sounded weird.
Holly: It sounded very weird. I struggled. So, it's not like how you and I hear. Like it's a very different type of hearing. People sounded very robotic for a very very long time.
Crystal: Do they sound normal now?
Holly: To me yes normal.
Crystal: Okay
Holly: And that was the other challenge for me that I was told with my audiologist because my mapping had to be paired up with my hearing aid on my other ear. And when I'm already used to so it created a great big challenge for the audiologist as well.
Crystal: Is that maybe the reason why they wanted you to get both?
Holly: It would have been easier for them and less challenging for them. I even remember her telling me before I had my implant that she on several occasions had to talk with her colleagues and other people on what to do with me and how to handle me because I was such a different situation, a different case. It was so long that I was in the what was called the gray area for being qualified as a recipient for a cochlear. And I would just remember her telling me I was in the gray area for so long and that grey just kept changing colors you know getting darker and darker. And I remember that's how she described it to me and then because I was so adamant to keep whatever hearing I had left It created that difficult challenge for them.
Crystal: I think that's a good point that we need to point out is that not all deaf people are candidates for Cochlear implants.
Holly: Correct.
Crystal: I think that's a misperception that a lot of people have is that oh you're deaf get a cochlear implant but is it able to be turned on. So, my daughter knows a family that's generationally deaf and their son was born without an auditory nerve so if there's no auditory nerve there's nothing to attach a cochlear implant to. So, I think that's something that a lot of people don't understand is that not all deaf people qualify. In addition to that, you usually have to have pretty significant profound hearing loss in order to qualify. If you have a moderate loss most doctors, at least that I know of won't implant. So Cochlear implants are not an option unless you're really profound, severe to profound. So, how did your family feel about your cochlear implant?
Holly: Um my dad was very mad at me because of how I reacted when my mom wanted hers and how I was against her getting one. He was very angry with me not because I wanted one but because how I reacted to my mom getting one and then I turned around and got one myself.
Crystal: Sure. How did your daughter react to it?
Holly: I don't think she really did.
Crystal: She was just like whatever.
Holly: Yeah I think so
Crystal: I think that's part of their generation though
Holly: Not because I was divorced even at that time and it was just her I remember saying to her I'm gonna need your help and I remember asking her a lot of questions. What am I hearing? What is that? Even though she has her own hearing loss herself. I did rely on her a lot. I remember sitting down and practicing on me being able to hear and saying to her read this word to me tell me if I'm right or not. I'm gonna repeat the word back to you read this phrase to me. I'm not gonna look at you because I don't want to read your lips. I want to be able to figure out what you're trying to say to me. And I remember us sitting down and working on that.
Crystal: So, it takes a lot of therapy afterwards in order to get to the point where you're feeling like you're feeling normal.
Holly: I didn't see anybody outside but as a kid or a young adult you might want to consider seeing somebody because I think they did say that to me and if I ever needed it, you know it's there. But I do remember going on the Cochlear Americas website and you know clicking their resources and their tools.
Crystal: So, wait a second so are you telling me that as an adult with a cochlear implant you did not get speech therapy afterwards? That wasn't part of the package?
Holly: I think it was an option if I needed it but I did not need it okay. Because I did most of it on my own.
Crystal: Because I know that the families that I work with especially if you go to a major Children's Hospital that's part of what they call the cochlear implant team, where it's like you get implanted you get mapped but in addition to that you're also required to go to speech therapy. Partially because I think hospitals, they have to show the success rate of any type of surgery or procedure and so if they know that you're less successful, especially children if they're less successful without therapy, then they'll add that into it. I'm sure that's not the reason they would tell you. They're gonna be like oh yeah this is just for you but I think there's probably a reason behind it. So that's interesting that you're allowed as an adult to be like no I don't want speech therapy.
Holly: Well, I feel that when my mom got the implant, she didn't have those options. She didn't have those resources whether they weren't available or she was ignorant of them or she didn't want them I don't know that. Um again, I can't ask my mom. My mom did pass away a few years ago. But I vaguely remember my audiologist at the time saying my mom didn't have that option at that time because they weren't available and maybe that's why it didn't work as well for her and maybe that's what you're saying they realized that people you kind of need this. You need this retraining. You need that experience and somebody to help you along with that and my mom didn't have that. My mom didn't do that. She put it on and expected things to magically work and they didn't.
Crystal: Yeah, so when I work with families that have a child with a cochlear implant or they're considering a cochlear implant one of the things that I tell families is getting a cochlear implant and using speech is the same amount of work as learning sign language as a family and not getting implanted. It's just a different work. So, a lot of people think oh learning a new language is too hard, I don't want to do this. And it is hard. It's not that it's not hard. But getting technology and going through speech therapy going through the mapping that's work too. And neither one is better than the other, it's just a different type of work. So, you as a family have to figure out what is the work that you want to do.
Holly: It is work. You want to do anything, you put in the work. Is it the same for everybody? No. And my opinion is if a family wants to put their child through the work of getting a cochlear implant, they need to make sure that they have the support there to do that. Same as learning sign language. And if you're not going to put in the work, you're not going to put in the effort you don't have the support no it's not going to work. You're going to be failure at it. Do I think learning a different language versus having a cochlear implant one's harder than the other? No. But like you said they're just different.
Crystal: Different work
Holly: Different work and what you're willing to do it's still work.
Crystal: So, you kind of touched on this a little bit earlier being a teacher how does your hearing loss affect you? So, you obviously said you got a cochlear implant because you felt like needed it for your job in order to function. In order to be independent. How do you manage that? Do you use technology in the classroom? Is there things that you still struggle with and how do you deal with those things?
Holly: There are things I still struggle with. I always struggle. Okay, first thing you talked about was any technology or anything that I use. So, when I got my implant, I was given a lot of different technology with it, different microphones and other things and I did initially I tried to use them for staff meetings. Where there was one where I can have my principal just like kind of clip it on his shirt and so I can hear him better, or I could when I have a group of students around the table with me, I can put it on the table and kind of angle it towards them. So, I did play around with that and I did use those but I ended up veering off and not using them. I have a remote control that I can use to adjust the volume on it. I'm gonna be honest and say I don't use that anymore because I can't find the charger and I haven't been able to go online and try to find out how I can get just that charger without having to buy the whole new remote which is a couple hundred dollars. So, I don't do that. So, I am very guilty right now of not using some of those other resources and tools that came with it. I did initially but I don't anymore. I do use an app on my phone occasionally but I would have to say now that the pandemic and the mask stuff is gone, I don't use it nearly as often. The telephone was a big thing for me. I had what is called a caption call phone and I use that a lot and I really liked it and I kind of wish I had it 20 30 years ago but I will say since I've gotten my implant and as the year has gone on I don't use my caption call phone anymore. I do find that I can actually make a phone call now. And I remember the first time that I used the phone at work and I was actually able to call maybe a parent or whatever I was like ecstatic. I was excited that I was able to use the phone and call. I still have my secretaries or somebody else make phone calls for me at work especially if it's somebody that I haven't ever spoken to on the phone before. Or I have tried to talk to them on the phone before and I've struggled due to what they sound like. So, I do use the accommodation where I have had other people to make phone calls for me. Or I'm at the point now they don't have to make it for me but as long as I'm right there. I do better on speakerphone than just holding the phone up to my processor so I have to find a place where it's okay to talk on my speakerphone.
Crystal: So, your cochlear implant doesn't connect directly with Bluetooth?
Holly: Um it could but again that's the one thing that I don't use very often and I've never really felt very comfortable with how that sounded.
Crystal: So, your co-workers, you've been there for a while so how did you get everybody accustomed to working with you differently?
Holly: They're still not accustomed because they forget sometimes even though I've worked with them for 10 to 12 years.
Crystal: So, because I think that's a major thing is that you have to teach people how to communicate with you because
Holly: yes, that's what I've had to do.
Crystal: One of the things that I constantly am telling my kids is people are not doing it on purpose, they just forget because they don't have to think about it. When our family goes anywhere whether we go to a museum or the movies or on a cruise or wherever, we have to think about communication. Is there a sign language interpreter? Is there closed captions? Like what exactly is the communication acoustics of the room? Are we gonna have to switch back to sign? These are all things that we think about every time we walk out the door. And I think that it's such an interesting thing that because again, you speak really well, people forget right. So, how often do you have to remind them and how do you remind them?
Holly: So, a couple different things one in my classroom, I have a teacher assistant and anytime I have a new teacher assistant one of the things that I say is I need you to be my ears for me I am not going to be able to hear everything in the classroom. I'm not going to be able to hear things the kids say especially if I'm sitting here and I'm focused on this. I am very very good at tuning out background noise. I've been taught and trained on how to tune out background noise. So, I am very good at that. So, if I'm at my table with my group of students don't ask me what's being said or heard in any places in my room. And with my implant I can't always differentiate with what I am hearing. I can hear that there's noise I can hear that there's people talking but can I make out what they're saying? No. So, I think in that aspect my teacher assistant has to step up and help me with that. I am fortunate that my students know and they will definitely help me out and my students will be my ears for me sometimes. We communicate a lot in my building with walkie-talkies.
Crystal: Oh hows that.
Holly: I do not. I carry mine around. I have it on. I do not. I can't even tell you how many times, especially this year specifically a student would tell me what was just said on the walkie-talkie or that they're trying to get in touch with me. Um other things. Staff meetings like what you were saying earlier you have to think in your environment and your situation. I go into places or different rooms and kind of where is the speaker going to be talking? Where's the best place for me to be sitting? Or if I got there late and there's no options and I have to sit in the back or where I don't want to sit, I have to look around and look at who am I comfortable sitting next to that can help me out you know. So, I do have staff members and co-workers that are absolutely amazing. I will approach them afterwards and be like what was just said? What did I miss? This is what I caught. Or I'm very well known to email my principal afterwards and say we need to touch base I need you to catch me on some things that I missed.
Crystal: So, I think that's a really good thing to point out on how hard deaf and hard of hearing people have to work. So, for example with my daughter for classes she uses an interpreter but nowadays a lot of the teachers will use technology. They'll use videos and things like that, some of which if they're really old, they don't have closed captioning. So, then what happens is then my daughter has to have her interpreter interpret it for her and send it back which all takes time and so one of the things that you don't think about is okay everybody else is getting the information all at the same time and a deaf and hard of hearing person may have to go back and get the information later but they're still held to the same timeline accountability. So, if for example my daughter has a project due on Tuesday even though her interpreter didn't get the video back until Monday and then all of the other kids have had three days to do this, she has to do this in one day. Which we have fixed now by saying in her IEP that she is required to allow to have more time if that happens. But that's another step that people don't think about is you have to work so much harder in order to get the same information.
Holly: Yes, and it can wear you out and it can exhaust you. To sit there and concentrate in onto hearing things and to listen and being able to lip read to that extent and process what you're hearing it's exhausting.
Crystal: So, that's something else to talk about is listening fatigue is what that's called. Um it's a real thing.
Holly: It is. It's exhausting. A couple different ways to think about this. I spend my day listening and the first thing I want to do when I get home is just to take them off. I'm not one of those implant people who like to wear theirs 12 15 20 hours a day whatever. No, I take it off whenever I can. I am totally okay going the whole weekend without having it on if possible because listening and hearing is exhausting. I get very anxious. I get very emotional when I can't hear something at work and then it comes back on me and then I feel like I didn't do my job or I can't do my job because I didn't hear it. And I hate to have to say I didn't know that because I didn't hear that. And then I take it as well, that was my own fault.
Crystal: But it's not.
Holly: No, that's just how I am.
Crystal: And it's an independence thing, right?
Holly: I'm gonna be very honest and say the masks for those two years was nothing but a living nightmare.
Crystal: So, that's a theme.
Holly: And it's still affected me today and I think it always will. I dreaded going out knowing I had to put a mask on and one of the things that I remember when I got my implant having conversations with the audiologists and other people was, I don't want to lose my lip-reading ability. I relied on that so much I'm a very good lip reader. Probably not as good now as I was before my implant. But I will say I think with the implant I can hear things that I don't need to lip read with. But the masks I don't care I still couldn't hear. Um you took away my safety net. Not you but Society, the world, the government, everything. You took that away from me. My ability to communicate. I don't care that I had the cochlear implant, I still couldn't hear you. And for me to have to take my phone out and turn this app on that didn't always guarantee to work depending on the background noise it just, I mean I can't tell you how many times I had anxiety with being in the public and just got to the point where I was too scared too afraid to go out because I was gonna have to talk. At work I stopped talking because what was the point. I couldn't hear you.
Crystal: So, you shut yourself off.
Holly: I isolated myself. What was the point of trying to talk to you I couldn't hear anything you had to say. And that's hard you know. We're social people by nature. I mean people are social creatures. We're not meant to be isolated as by our human nature and it made things difficult at work.
Crystal: Yeah, I can imagine because I know that that's how my kids were. They both got to a point where they're like I would rather stay at home than go out because it's too hard. And particularly my son socially isolated himself and I used to be like don't you want to go out with your friends or do this or that and he's like there's no point. And I can't understand anybody with masks on. And what at least in Pennsylvania a lot of people didn't know that there was an exception to the masking rule. You could take your mask off when communicating with deaf and hard of hearing people that needed but most people refuse to.
Holly: But I remember uh this was even before covid I was in the hospital for something and the nurse wore a mask and I had my implant but it was still fairly new and telling her I can't hear you. I cannot understand you. I am deaf. I have a hearing aid and an implant. And again, I couldn't tell you everything she says I know she's talking to me and I can probably pick out every second third fourth word but not necessarily everything and I remember telling her three or four times I cannot hear you. And then I remember at one point I did catch she turned to me and she says I'm keeping my mask on for my safety. I said, "Well fine, get me a different nurse”. When I went to see the audiologist that I had when I got my implant, uh I loved her I had her for so long she left right before covid. So, I had to see a new audiologist and this was shortly after all the shutdown the pandemic and all the masks are starting and I had to go for an appointment. I had a new audiologist never met her before. Masks were 100 mandatory quite yet. We were just starting with the whole mask and she had on two masks in a screen like three barriers and still stood her six feet away from me. I'm in an audiologist. I'm an ENT office and I'm telling him telling her I cannot hear you. Did she do anything? No.
Crystal: So, my daughter had a similar experience at an audiologist. This was actually before covid and didn't have to do with masks but we were in an audiology appointment. New audiologist we'd never seen. We walk in and she calls Samantha back and then she starts talking and she turns around so she's not facing Samantha and she's walking away from her. And the entire appointment she was covering her mouth or she was doing like other things and I kept saying she can't understand you if she can't see your face and she got snippy with Samantha. And Samantha walked out of that appointment in tears and she said I never want to go there again. Now Samantha has been going to audiologists since she was three and she was maybe 14 at the time. So, for Samantha to say that, that's terrible. And if there's any audiologist listening to this right now you need to make sure that the people in your office do better. If you're dealing with people that have a hearing loss, learn how to communicate with the people that you are treating. Some of these audiologists are amazing and some of them just act like they're not in this profession.
Holly:I have to say and I'm sorry if I'm offending anybody but ever since covid and how things were handled in the office that I went to I hate going there now. I don't think anybody is accommodating. You work in an ENT office you work in an audiologist's office. Obviously, you're dealing with people, children, adults, with hearing losses. There was no accommodations. There was no way they would lower their mask for me. Even just for 30 seconds to tell me two or three words.
Crystal: And let's just put this out there that when medical professionals do that that is discrimination.
Holly: The field the profession that you're in you're dealing with people who are deaf and hard of hearing you won't accommodate them but I go to my regular doctor and as soon as I tell her I can't hear you what do they do? She took the mask right off and said OKAY let's accommodate you. So, this doctor was willing to accommodate me, the nurses were willing to take their masks off while they're taking blood out of my arm to communicate with me, but audiologists and ENTs and all that staff no.
Crystal: So, it's good to point to that out that there are a lot of medical professionals that do a great job at accommodating once they know how to do it. So, part of the issue that Samantha and I have figured out is that a lot of doctors' offices are not trained on how to deal with deaf and hard of hearing people. So, for example my daughter went to an orthodontist and I had to explain to them that yes you are required by law to provide a sign language interpreter and they didn't even know how to do it. I had to explain to them how to do it. They were trained. I hooked them up with the department of deaf and hard of hearing through the state who gave them some information on how to get the proper resources and after that they were wonderful about it. Every time we walked into the office, they had a virtual interpreter that was up on the screen and it was great and every single time they had it but we had to teach them how to do that. There're some medical professionals that are already great about it and some that just need to be trained but there are a small amount of offices that you can go into that don't want to accommodate. And because this is my podcast and I'm allowed to be controversial I'm gonna just say it, when you do that, you are discriminating against deaf and hard of hearing people. You would never have an orthopedic surgeon not have a ramp and make their clients climb steps. You would never have somebody that provides wheelchairs and then say hey um in order to get your wheelchair you have to go up a flight of steps. You would never do that. So, it should not be that way in any type of hearing office. There should always be accommodations. This is your business. This is your livelihood. This is what you do for a living. You should know better.
Holly: And I think it's different for, like you said, people like me who are oral who sound okay. And yeah, I get a little mean and snippy sometimes and then I have been known to take them off and show you and say yes, I cannot hear you. Again, this was pre-covid, I went to see a doctor and he had no manners with his patients and he came in sat down and his back was to me facing his computer he's talking away and I remember him turning around at one point and this I caught he snapped at me he says why I asked you question why didn't you answer me? I said because I'm deaf I didn't hear a single word you just said. And I mean yeah, I am known to get very snippy and very rude. Have I got in trouble at work for getting up and leaving staff meetings because I can't hear and I don't see the point of sitting there anymore? Yes. Did I get in trouble in college and stuff like that too. Yeah. Yeah, that was my way of teaching you not so nicely. I'm sorry. I apologize but it is frustrating and um Sam's gonna have that problem for the rest of my life.
Crystal: Again, I think there's a lot of people out there who just don't know what they're supposed to do and that's why that is and that we can correct. Because if you can teach people, hey this is how you communicate. This is what I need from you. But the people that are just like unwilling, that's when my kids get angry and I get angry because I'm the mama bear and I want to protect my kids right.
Holly: And it's not always the same. Like so with me and I'm sure Luke experiences this, if he hasn't, he's going to, it depends on where we're at, who we're talking to. One person I might not need any accommodations because I can easily understand them, but then this person over here I'm sorry I'm never gonna have a conversation with you just the way you speak, your facial hair, your accent, whatever reason. Your teeth, sorry um you have nasty teeth I'm not going to talk to you. Um and that has happened to me if I can't handle how your mouth looks, how your teeth look, there is a very slim I'm ever gonna have a conversation with you. Don't ask me what somebody's eyes are look like and what their eye color is but ask me about their mouth and their teeth I can tell you. So, yeah I mean it's not always going to be the same. I can understand some people better than others. Just the nature of how it is. When after I got divorced and I tried to start dating again, oh my gosh when do I tell this person? You know you're doing online dating because that's how dating is done these days. You know nobody meets you anywhere in person anymore. How and when do you tell a person that you've been chatting online for a week and then you go to see them in person and you're hesitant because you don't know if you're going to be able to hear them in person. You got a long great online. Do you tell them online before you even meet them? Hey I'm deaf I'm hard of hearing? Um or then you go out and you meet them, you don't say anything and you go out and you meet them and you're at restaurant it turns out that restaurant's kind of noisy and you're having a hard time hearing and you're on your first date and you can't hear the waitress because she's wearing a mask.
Crystal: Stressful.
Holly: It's been stressful. It's been yes and it's gotten to the point where, what is the point of dating then.
Crystal: So, let's talk about dating. So, do you only date hearing people or have you dated deaf and hard of hearing people?
Holly: I don't think it's by choice but no I've never dated a deaf or hard of hearing person. I don't think it's just because I'm avoiding deaf and hard of hearing people it's just because I've never really met anybody.
Crystal: So, when you're on a date how do people react when you tell them?
Holly: You know there's been a couple times where I've never brought it up. Most of them were like okay whatever and then if we went out on a restaurant I sometimes have to say you know what this isn't working for me I can't hear you here. Not that I'm saying I went out on a lot but I did go out on a few and most of them were okay. But it was always you know when do you bring it up? When do you mention it? Do you?
Crystal: Yeah, that's gotta be hard. Okay so let's switch gears. So, do you feel that it's different for your daughter and her hearing loss than it was for you and if so, do you think it's better or worse for her?
Holly: I would have to say all of the above. So, I think for my daughter knowing how I was brought up how she is now I kind of wish I did expose her a little bit more to the Deaf culture just for the education and knowledge of it. She pushes back when she's tried to being pushed into learning more about the Deaf culture and other hard of hearing people.
Crystal: Do you feel like that's because she doesn't want to accept her hearing loss or do you feel like that's just because she feels she doesn't belong there?
Holly: I think it's more if she feels what's the point. Why do I need that? I think she accepts her hearing loss and she doesn't have a problem with it. She was brought up a little differently and I think it was because her hearing wasn't as severe as mine and she didn't need as much help and support accommodations that I needed. Like I needed that early intervention services. I needed that IEP and that hearing teacher you know starting at the age of two. And I think that's the other thing in my mind too when I had her I knew there was a strong possibility that she was going to have hearing loss so I remember okay I'm a teacher. I had that teaching background. I have that background of what she needs in case she doesn't have the hearing and I remember pushing things on her at young, the language the reading so when it came time that we found out she has a hearing loss I was actually surprised because she was doing well language-wise.
Crystal: Well that makes me feel better because I didn't know that my kids had a hearing loss and I thought I was a terrible mom for not knowing.
Holly: I felt weird. I felt like are you serious? I didn't pick this up and I know what to look for. And I think it's because I just did things with her so when I found out she had a hearing loss I immediately went and had her tested for speech. Well, she didn't qualify because her speech was actually advanced for her age despite the hearing loss. And I think that's because you know I did things with her anticipating the chance that she was going to have this hearing loss. So, then and she goes to daycare and I remember talking to the teachers you know she doesn't hear very well and if something came up I just talked to them and I got any accommodations I needed. She goes to school, same thing and she never had an IEP all through school. I never pushed it because anytime something came up or you know she needs something I would just simply you know go to them and say hey you know this is what you need to do for her. And they were to think okay no problem. But then I also never pushed it because the second component of an IEP is they have to have an academic need. She never had an academic need. Like even though I kept checking on her speech, I kept checking on her vocabulary, I kept checking on it she never showed a need for any of that. Is it because of the way I brought her up knowing and I pushed things with her. Maybe. I don't know. When she hit middle school that's when I pushed the 504. I pushed a 504 because obviously she's going to need some accommodations. Middle school teachers aren't as nurturing as elementary school teachers and that's not an insult to anybody it's just how it is. So, she had a 504 and it she didn't get an IEP until her sophomore year in high school and it's still at that time, I was still hesitant. Why does she need an IEP? She still doesn't have that academic need. She's taking in all honors classes. She's taking advanced placement courses and she picks things up like I never did. Like so the struggles that I remember experiencing in school I never saw on her. She never expressed those same struggles. Occasionally she will and even till this day we're now at the point with her IEP, what goal do we put into her? Self-advocacy. There's no academic goal for her. She's taking college courses. Now, have I had a lot of conversations with her over the past few years how to do some things with her hearing? Yes and I think that's one of the reasons why she doesn't need that hearing teacher telling her because I'm the one that's doing it. Are there things lacking? Yes. I agree. Do I feel that's all my fault? Not 100%. We don't talk on the phone these days like we did back then because of cell phones and texting and email and instant messaging in social media so can my child pick up the phone and talk on the phone? No.
Crystal: Let's be honest, I'm not they're sure there's a lot of teenagers hearing or deaf that could do that right.
Holly: She did have, she tried a new job at one point and her job was to require to pick up the phone and take orders and she couldn't do that. Part of it that was because of her hearing and I know we even talked about she didn't know ahead of time that that was going to be a responsibility for her and she even said if I knew that I wouldn't have taken the job. She ended up quitting the job after a few weeks because of that one reason. um. and I don't blame her. I mean I think about that too if I want to change careers
Crystal: So, I think that's a really good point that she may not have needed a lot more than somebody that was born in a hearing family where they don't know the things that their child needs and so that's when a teacher of the deaf can come in and be like hey you need to accommodate this child. Because I think that you knowing what you needed, you were able to advocate for her in a very different way than a hearing parent would so it probably is a little different
Holly: In that aspect maybe yeah.
Crystal: Okay, so we've been talking for a really long time so I got one more wrap-up question for you. So what advice would you give to other deaf and hard of hearing people like especially teenagers, young adults that you wish you would have known?
Holly: It's never going to be easy and that's okay. It's always going to be work. That's not advice I guess but just accept who you are and know that it's okay. My hearing has made me who I am and do I like that some days? No. But am I proud of that sometimes? Yes absolutely. So, accept your hearing for whatever it is. Wherever you are or how much ever you have or you don't have and you have to do what's right for you regardless of what the hearing world thinks, or the Deaf culture thinks you have to do what's right for you and feels best for you.
Crystal: Well, thank you so much, this has been such an amazing interview. Thank you so much for being here.
Holly: Thank you for having me.
Crystal: If you're just tuning in for the first time to my podcast, I encourage you to go back and listen to some of my previous episodes from last season where we discuss an array of topics from all different perspectives. Don't forget to like and subscribe to my channel and if you really like my podcast check out my Facebook and Instagram pages and of course share with your friends. Also check out my YouTube channel where I have the first three episodes of the podcast interpreted into American Sign Language and we'll be continuing to add more as time goes on. Stay tuned for future episodes coming out but until next time I'm signing off.