Hearing Loss LIVE! Talks Parenting Kids with a Hearing Loss

Join Hearing Loss LIVE! as we talk with one of our favorite parent advocate, Hollie Poe.  Hollie will share her adventure of raising a Hard of Hearing child.  She will talk about tools she was given a long the way. She will talk about tools she wish she had known more about.

Most importantly she will talk about how important teaching self advocacy to your child is. 

If you are parenting a child with a hearing loss come share your experiences. Together we can make change for the better!

For more information reach out to info@hearinglosslive.com.

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Transcript

Welcome to Hearing Loss LIVE! Today, we're going to talk about parenting kids with a hearing loss. Julia: Happy November and welcome to Hearing Loss LIVE! We are going to start having special guests. And we are so excited because this week we're going to bring on Hollie Poe, a really good friend to Hearing Loss LIVE! And we are going to talk to you about parenting with a kid with a hearing loss. Now you'll see from my portion of the blog, I kind of go over some of the things I wish administration would talk to people about. And it's a lot of things I've come across because a parent didn't know all the, the avenues they could use in school with their kids. And Hollie, I'd like to start with you. Can you walk us through? Let's start from the beginning when you found out that your son had a hearing loss and what it kind of looked like in, your in your life, because he's 17 now, right? Yeah, so give us the last 17 years in a synopsis.

Hollie: So Ben was born. We had some complications at birth. And so he was on extra machinery and all the antibiotics, ototoxin antibiotics and stuff that they kind of pre-warned us that it could cause a hearing loss. And we didn't really think much more about it than that. And then -- he was almost two, I think it was about one-and-a-half. And he was an early speaker. But then he started to drop sounds. So for zebra, it became eera after he already said zebra. And so I thought that's interesting. So I took them for an appointment and asked his, his doctor and so she lined up an audiologist appointment with us and we went in had him tested. And for a little kid. I mean, it's really hard to test them. They have to do different games and things and but he did pretty well. The first thing she said to me when we came out of the booth was "Oh, I'm so sorry." And I just said "what?" Before that she was laughing and giggling with him and you know, poking his belly and teasing and stuff. And he was just laughing away. And then after the appointment, she was just somber and morose and just apologized. And he's still the same kid. Why are you acting like he's dead? He's still the same cute little kid having fun with your toys. And so that was my first kind of experience and that, that it I had a different perspective, I guess, than what the the professionals did. Should I keep going? [laughing] 'kay. And then when he was oh, I don't know, three or no, I guess it was right after that. We started him in the parent infant program, which was wonderful. It led us to a lot of resources. But the kind of the weird thing about how I found it wasn't through the audiologist. And it wasn't through the ear, nose and throat doctor after we had all the test done and stuff. they didn't tell us anything about it. It was actually I was just trying to figure out what to do and how to learn more. And my sister says, Oh, I have a friend at work that’s Deaf I'll ask him, and he gave me the number to Sanderson Center. I called Sanderson Center and said, Hey, you guys have any any pamphlets or information for a parent and then they introduced me to the parent infant program. So it wasn't where you think you would get it. It was just by word of mouth. So and that was disappointing for me because I'm I'm one that doesn't. If I want to know something, I keep looking until I get there. But what about all those young moms or dads that that don't have that? The older years that I did. Knowledge to kind of push and keep looking for an answer. And then they helped us train for audiology exams and did some speech therapy with him. And they were, Parent Infant Program was great. And they introduced me to a group called Hands and Voices. And that was a group of parents that believed that their children should have the right to decide if they wanted to use their hands for sign language, or their voices for talking or lipreading. And so they kind of presented all all avenues. And then it was just a really neat mix of people we'd get together and, and have a huge park day up at Sugarhouse Park and it was wonderful and, and there'd be kids signing and kids talking and kids lipreading. And it was just it was really neat, a neat experience. I remember one time Ben was, he was maybe five or six, and we were trying a school speech therapist. And it was the only time we ever went to this lady. And she had an appointment, and I just had his younger brother, and his name is spelled JAX. But it's pronounced Jacks. And the speech therapist was asking Ben about his younger brother, and he says, and she says, "oh, what's his name?" And Ben replied,"oh, that's Jax". And she says, "No, watch my mouth. It's Jack." And Ben is, "no, it's Jax." And I could see him shaking his head. No. So I stuck my head in there, listen for a minute. And he kept trying to tell her and she kept trying to change what he was saying. Finally, I took his hand and said, "No, it is Jax." And we left and that was the last time we used her. Because I feel like if she's not gonna listen to my child, and and maybe explore, could that be truthful? Could that be a possibility? Then I didn't want him anywhere around her. So um, that was also the same time that the state had decided to, to tell parents, oh, we had a Deaf mentor program also, which was really neat. So most of our Deaf mentors were hard of hearing. But it was a really neat experience to open us up to Sanderson Center and more activities and more examples of older kids and adults with hard of hearing or hearing loss. And that was really a nice experience. But in the state to continue in the program, they wanted us to pick a language, either ASL or English, and we wouldn't do that. So. So we were no longer involved in that the Deaf Mentorship Program, which was was kind of sad. But that's when I decided to go back to school and learn sign language. And I ended up going back to school more for me than for my son because he chose not to, to really use sign language. But that's, you know what, that's his choice. That's what we wanted was him to have the choice. So

Julia: All these stupid buttons. Okay, can you walk us through? Now, keeping in mind, this is the State of Utah. And it's different in every state. There are some states that don't make you choose, you can have an interpreter and CART in the classroom in high school. Can you walk us through your adventures in public, in public school? How did that go? Have what steps do you-- I think I'm trying to get out? What do you want parents to know most as they transition into a public school, if they choose to go that route, that makes sense?

Hollie: Your rights. Your rights as a parent to advocate and push for, for the assistance that your child needs. And not to give up? When Ben was was entering into public school, and we were thinking at first to enter him into public school when he was younger, and we sat there in that office for Jordan School District, it was at the time. Because they wouldn't want to give him, they didn't want to give him an IEP because they said, Oh, well, he knows his numbers and letters, he doesn't need an IEP. And so we sat there, I had a baby and Ben, and we sat there in their office and they said, "we're done with the meeting." And I said, "well, I'm not my son doesn't have an IEP, yet. I'm not leaving. He has that right." So, so we didn't leave. And then eventually, he did. But then also we decided not to send them to public school. So we found that charter schools worked better . Well I guess charter school is a public school, excuse me. But we found that they typically have smaller classroom sizes, which was was better for him. And they seemed better willing to provide the services needed or the request needed for him. So

Julia: Sorry, my microphone was on the whole time. It was hitting all sorts of different buttons. And button. Something. Now, so he's a senior now, right, Junior? Junior? Yeah. How's it going? Give us some pandemic thoughts, having homeschool. Transitioning back and forth. How is that? What should parents look for? with hearing loss and and thoughts on how to handle and mitigate that? Think it's easier or harder?

Hollie: You mean with a pandemic? 

Julia: Yeah.

I think -- [talking over] Hollie: I think some services are a lot easier to gain access to. I think that having everyone now, most everyone, has access now to virtual meetings like this, it's a lot better for lipreading, it's a lot better for, for the captions. And so I think that that has really opened up a lot of services to people that maybe couldn't get services before. They maybe weren't near a big city or you know, didn't have that opportunity. So that's been really nice. I think the pandemic was definitely harder on social involvement. Because, you know, I think that's true for everyone. But I think if you have to go out into public, it was harder, because then everybody was wearing a mask. And so if you did use lipreading, you were in a completely silent world without anything. I mean, you couldn't lipread to even know what the person was was referencing to and, and that made it a lot more difficult. And then if someone wore hearing aids, and other people wore masks, then that made the hearing aids not work as well also, because that was a muffled sound that was coming through. So that was definitely more frustrating in in public. I love, I live in a part of the state where they, most people don't wear masks down here. So fortunately, Ben hasn't had that problem with his teachers in school since he's been back, but he wears a mask. I wish the teachers did also but you know, that's another battle. So does that answer your question?

Chelle: Yeah, I do. So with the mask at school. It didn't say I'm taking up the teachers are not wearing a mask where he goes to school. So that's not an issue. Does he ever use the speech-to-text apps by chance?

Hollie: You know, once in a great while he will. He sits right next to the teacher's desk. Most of the time he does. He has the option to get notes from the teachers for the day. And he has hearing aids but he either, he's not a fan of them. So we've just never pushed him with those because he's still not a fan. He is taking sign languages first year this year. So that's, I think he's just doing it because he needs a language. [Laughing]

Chelle: One more question for you. What are some of the specifics of is the IEP besides sitting closer to. closest to the teacher and the notes?

Hollie: More test time. If it's an auditory test, like a verbal test, then they also have to have some way of written down for him also. That used to be a problem with spelling words when he was younger, you know, they would do a spelling test and that used to be a real big problem but the school that he was at the time they worked around it and and it was fine. He doesn't really have that anymore now but extra test time, extra time to turn in assignments. That's really it right now. Oh, he has preferential seating.

Chelle: Do they use FM systems with him at all or did he reject that too? [Laughing]

Hollie: They don't in this school. But his previous one they did. His, his Elementary and junior high, they, they had a really nice FM system in the classroom. In all of the classrooms actually, but in this one they don't. And he, he doesn't want it. The classrooms are smaller. And he hasn't expressed a desire to, to use that. And we also talked about the auditory fatigue with his teachers. So they know that sometimes, so he actually does have one class period where he can go and just kind of shut down and they have that as academic support, but he doesn't actually get academic support. He just gets a place to let his mind kind of rest. if hat makes sense. 

Julia: Wow. I want that my IEP. Michele.

Michele: I'm going to comment on that listening fatigue thing. You know, I started losing my hearing as a child. Was diagnosed in grade school and nothing happened. I had one doctor's appointment and my mother wasn't the type of person that was a big advocate for anything. And so I was left on my own and I used to get in trouble all the time for napping in the afternoon -- after school. I was supposed to be either cleaning the house or starting super or whatever. And I used to get in trouble for that. I did not learn about listening fatigue until I was in my late 30s. I had no idea that my being so tired had anything to do with my hearing loss. So I think that's absolutely fabulous that Ben gets that accommodation, because it's a huge thing. And of course, you know that, I was a child in the 60s and 70s so things are much different for Ben i'm sure I,and I do know people my age who did have really good parent advocates, but I've always admired you and your husband, Brian, Hollie because you're, you're so such good advocates for Ben and you don't put up with any crap from anybody. I would have loved to have that, have that as a child.

Hollie: Thank you Michele. It's really nice of you. Yeah, my husband Brian is he's amazing. He just, he doesn't skip a beat he just, he says all right so we're taking sign language, okay, good. Oh, we're doing lipreading this week. Okay, perfect. Oh, we're doing, and he just goes he's just anything to support, support our kids.

Julia: Yeah, you are, your model I think. I do wish parents knew more. And, and were able to reach out and get information either from another parent. I think Hands and Voices is a great organization. We'll make sure there's a link in our blog for that. And find, find those mentors that will help you say, this is what my son's IEP looks like. May not be your kid's IEP, but the basic knowledge of what you can go in and request. I remember being pleasantly surprised, during the pandemic we ran a little teenager type "milk chat," I guess it's not coffee chat when they're teenagers. So we'll call it milk and cookies chat online for the kids. And I remember being pleasantly surprised because one of the girls in Davis County which is just north of Salt Lake, her principal got right on board with getting Live Transcribe. Made sure all the kids when they went had to go online it was Google Meat so she could have captions. I just was that was really pleasant surprise for me because a lot of parents don't know CART can be an option or any type of speech-to-text in junior high and high school, where a lot of the East and West Coast that's just a given. It's it's just part of the education program. Chelle did you have a question? Did I see your hand up or was I--oh, it was Hollie. Sorry, wrong direction.

Hollie: I was going to mention also I don't know if you brought up the Parent Center. It's an organization through Utah, that help parents advocate for their rights within the school system, and they will either give you the information on the rights, and the laws. They will meet with you, they will meet with you and the school officials as like a mediator. Or they'll even advocate on your behalf, or, well, with you on your child's behalf. And they're amazing, they are really good, and they have lots of resources. So yeah.

Julia: We'll make sure we get that somewhere on the site. One of our goals is to have a directory that will help people each state. Any more thoughts, girls.

Chelle: We can talk about signs of hearing loss and teenagers, like we mentioned earlier, before the show, and like how I started to lose my hearing as a teenager. But nobody really recognized it. It was just thought I was ignoring people. Or I can think back to several instances, like one of them was being at the company pool. And there was tons of people and splashing going on and talking and I think even music in the background. And one of my dad's bosses called me over, but I didn't hear him. So I kind of kept walking and then they had to yell loud enough they finally got my attention and I look back and and he called me "Isn't that like the typical teenager there. Saying  'huh' all the time.' But I remember another instance where my mom was talking to me from another room. And I didn't hear her twice from another room. So I came out in the hall because you know, we're both getting best rated. I come out of my room into the hall and she's coming from the living room into the hall and we're like face to face. And she was telling me, "well for the third time" and I was like "well it took three times to hear you, okay?" So I had a really hard time hearing in the school hallways. I had a specific friend who I guess intuited that I couldn't hear well, so she, in the hallways, she would be the one popping up above everybody else jumping and going "Chelle! Chelle!" until I saw her. So that was like a noisy situation. In the classrooms I was fine because I was quiet but the hallways and in cars. This was before seatbelt law so I was always wedging myself between the seats if I ever had to sit back in back. I had to take my turn and sit in back sometimes which I hated. So if I did that, I was, I was wedged. My shoulders between the bucket seats and leaned as far into the front seat as I could otherwise I couldn't hear so those are some of the signs of hearing loss.

Hollie: Chelle, How were your classes? I mean, you said you did you did well in your classes. What -- do you here well and stuff in them, but like, did you do better with you know, certain type of class over others? Because of that, do you think or no?

Chelle: I just remember the classes being all okay, no matter what. It was just the noisy situations that I couldn't process. So I don't think it was men or women. Did I, I may have tried to set up front as much as possible. I wasn't the sit in back kind of person typically. So, who knows maybe that kind of filled in that way.

Michele:  I think because Chelle probably started losing her hearing much younger than her teenage years, because a lot for a lot of us it's very gradual. We don't even know that we can't hear. And for me when I was diagnosed I was already a really good lipreader because the doctor told my mother at that appointment. She's lipreading everything I've said. So she probably had this for a long time. And you know, in the absence of having anybody, teach us anything about hearing loss, we figure it out. We anticipate, we set ourselves up for success. You know, I always sat in the spot that I could lipread the teacher. Didn't always work. But I made good grades on school, but I did miss a lot. But I would borrow notes from other kids. And I'm not and no one that I went to school with, except for my closest friends knew that I had hearing loss. I was never approached by a teacher. I was never approached by a counselor. Noone ever paid attention to my hearing loss. So in the absence of anyone helping me, I helped myself without even knowing I was doing it. So I think that's probably a similar experience to kids who lose their hearing young and don't get much help. It actually is kind of a blessing in disguise, because it really gives us some great skills and tools. I wouldn't wish it on any child, though, I would rather have the help.

Julia: Yeah, thank you, Michele. I can't imagine not having an IEP. But I still see kids come into college, who have transitioned out of public, private, whatever. And they still don't know everything that's available to them to help with their hearing loss. They just, the parents don't know, the parents don't know to research. I don't know that it's necessarily their fault. It's just one of those things. It's kind of like when you go to the doctor, right? Oh, this is the doctor. He has an education. He knows best. But they're not always right. Right? So it's that need to just research to the little more. Any final thoughts? My ladies? Chelle?

Chelle: I have one more thing. I was just remembering, too, that my middle son has auditory processing disorder. So it's, it's kind of like hearing loss in a way, you know, we sort of need the same kind of accommodations. And he was in fourth grade. And operating at a, I think a first grade. First, very first grade level. And his-- I was like, okay, there's really something wrong here you guys by fourth grade. I said we really need to test him or something and find out what it is because another teacher suggested ADD. So I was like, there's something here there's something wrong. And it took a lot of pushing to get that testing done. But this was in the mid 90s, I believe. No, later 90s. So he was, they did all the testing and they said yeah, he has auditory processing disorder. But he doesn't qualify for any extra help. Like, you know, Hollie, they didn't want to give him an IEP either. And I, by this time, I had done tons of research on the internet and baught probably 50 bucks on the topic. You know, I was researching everything. And the school absolutely refused to give him any IEP help. Because they said something like his average peer was one grade level behind. And he was only like one and a half grade level behind them so he could catch up maybe. I'm like he's like catch up because he's coming home every day crying. And this is not good for me. And I'm not gonna I'm not gonna do it. I took them out and homeschooled them for a couple years. And we moved from Southern California to Arizona, and when back into Arizona, he wanted back into the school system. And I pretty much demanded an IEP and luckily Arizona followed through with that.

Julia: I too, had a situation with that with dyslexia and my daughter, because we'd caught it before the school would even test for it. So I remember that battle. I actually have a client that has both auditory processing disorder, and hearing loss. So Michele?

Michele: Just curious, Hollie, I think the statistic, I don't know what the exact statistic is, but I think nine out of 10 kids who are born with hearing loss or diagnosed really early, have hearing parents. I mean, it's a really high percentage, and so they function pretty much in a hearing world. They're not born into a Deaf family who uses sign language. I'm just wondering about The kinds of things you and Brian have done over the years to help Ben understand and communicate when there's a group, you know, all those really hard situations for us with hearing loss. Being able to participate in big family gatherings and that. What kind of things do you and Brian, to help Ben with that?

Hollie: Honestly we, we don't live near a lot of family. So we don't really have a whole lot of big family, you know, gatherings or get togethers or things like that. And so I'm just trying to think what something that would be comparable. I think that we've always, well, we, and this actually started from my mom, my mom has a hearing loss and and when I was younger, growing up, I remember when we go camping, she would, when it would get nighttime, she would say okay, I have to you know, I can't remember what she would say it was so funny, though. But it was basically she would have to see our lips, oh can't see your lips, I can't hear you. So we would all have to shine flashlights on our faces to talk. And so that was something that we just carried over to Ben was that you know, light to see, to see the lips. Make sure you're facing each other. Don't be afraid to stand up and say, you know, I didn't hear you. Please face me and say that again. And, and your needs change. That's another thing that we try to impress on him too, is that maybe right now something works great. And maybe in a few years, it won't. Maybe you'll find something that you like more, maybe you'll want to ask for different services next year. And that's okay, because your needs change based on what you're doing and who you are and what you like at the moment. So don't be afraid to say, Well, you know what that was last year. And this year, I need something different. So.

Julia: Good advice for everybody, right? inclusion is things change. Roll with the flow. All right. Thank you for joining us. We hope that this has helped you a little bit in your parenting with your kids and their their hearing loss. Sorry, have a thing going on here. Next week, we're headed into the holiday months. So we're gonna start with how to travel by plane. Look forward to reading our blog. We have Michele Linder, who is one of our favorite travelers and we can learn quite a bit on best practices for traveling. So I'm really excited to read and hear what she has to say and, and hopefully, you know I, I hope also it'll help us maybe figure out some ways to make better communication happen and inclusion in airports and and bus routes and all that sort of stuff. Maybe Chelle we'll have some more information about locally what they're trying to do there legislatively wise. We look forward to seeing you next week. Please follow us on your favorite social media platforms. Lead your family members to our audible if they prefer their podcast in a audible form. And we always have a written-up part of our podcasts with our Buzzsprout. Thank you for joining us. And thank you, Hollie. Yes, one more thing. Hollie?

Hollie: I just want to say thank you so much to each one of you. You guys are amazing. And this is such a wonderful platform. I just can't thank the three of you enough for doing this.

Julia: Well, we're glad to have you with us. And you'll be back. I know you will. Thanks everybody. Bye. Join Hearing Loss LIVE! next week's talk as we talk to you, best practices traveling by plane.