Families with Hearing Loss

Rebecca: Hello and welcome to the Future is Sound. A partnership in hearing podcast brought to you by Oticon Canada. I'm your host, Becca Angel. Thanks for joining me on my first podcast journey where we will chat broadly about all things hearing. We will launch fun new episodes every month and if you have any suggestions or comments, be sure to get in touch. Okay, let’s get started. Hi everyone and welcome to another episode of The Future is Sound. Today we are going to learn a little bit about the child and parent perspective on hearing loss. Today we have Fern and Leah here with me this morning. Thank you guys so much for being here and taking time out of your busy lives, especially on a Saturday morning, which I know is probably a really fun day for you guys. Before we jump in, can you tell me a little bit about yourselves? Take a second just to introduce who you are, where you guys live, and anything else that you'd like to say. Leah: Do you want mommy to go first? Or do you want to go first? We're a family of four, and we live in Vancouver. Fern is a twin, so she has a twin brother who is not with us right now. He's out with his dad, so that we have a quiet house to be in to focus. Something else about us, we're learning how to ski. We just bought skis and went up to Red Mountain on a ski trip. [inaudible 00:01:40] Rebecca: I love Red Mountain. We were there over christmas. We have a friend that bought a house in Rossland and it's just a fun mountain. Leah: It's so amazing. It's an accident we ended up there because we traded our place with another couple who has an Airbnb up there. Now we're going to go every year. We fell in love. Rossland is so cute. Rebecca: We were like, should we move to Rossland? It's such a cool town. What about you, Fern? Purple is my favorite color actually so I do like your stuffie. Leah: You want to say something about yourself? Rebecca: How old are you? Are you in school? Fern: My name is Fern and I'm six and a half. Rebecca: Does that make you in grade one? Fern: Yeah. Rebecca: Cool. I have a nephew, my brother's little boy, who is also six and a half. You guys are almost the same age. He just had his birthday. Fern: My birthday is in three weeks. Rebecca: Oh, cool. You guys are almost the same age. Leah, this is a question for you but we'll also get Fern's perspective too, when did you start to notice that Fern might have hearing loss? Because having a twin might give you a unique perspective because Winter has normal hearing. Leah: It did help us to notice things for sure, but Fern and Winter are also very different kids and needed different parenting styles. I don't know if it was as a parent to us until Fern was really talking a lot more and putting sentences together. She was always very chatty and before she was using words, talking to Winter in their little babbling language, but she was always very vocal. I've read that often the sign is that kids will not be very vocal if they are having hearing issues. That wasn't the case for Fern. She was always making lots of sounds, but I think when she started to really talk and form sentences and communicate to us in that way, she was actually saying what do you say? She was saying can't hear you, can't hear you mommy. Then we started to notice just more subtle physical things, like her leaning in like that if we were talking. Also noticing that she was looking at our mouths when we were talking. That was really apparent. Compared to Winter, it wasn't exactly compared to Winter at that time because they were already kind of so different. Rebecca: How old were you Fern when you were saying what you were saying, when you couldn't hear that well. Fern: Three. Leah: You were about two and a half. I'm sort of trying to figure out the timeline, but I would say around two and a half was when we started the process of reaching out to the doctor. Rebecca: I'm assuming you went through newborn hearing screening? Leah: We did that in the hospital and then finally, Winter was the one who had to go back for another hearing test. I can't remember when it was, months later when we actually had to take him into the audiology center as an infant. He was fine. I always have these thoughts that they mixed them up because they were twins and maybe it was her test. I don't think that actually happens. Rebecca: There could be a lot of reasons to go back for a retest. Any sort of fluid or anything, they want to do it again. Leah: We did do those and he didn't produce anything. Everything was fine. Rebecca: When you were two and a half, you started to go in for some testing. What was that like for you, guys? You had to play a game or something, like put some blocks in a hole or look at some moving toys. Do you remember that, Fern? Leah: Do you remember going to the hearing doctor and you had to drop something into a bucket each time you heard the beat? Do you remember that? Fern: No. Leah: How about this one? You've been going now a lot to the hearing clinic. Do you remember the one where you see something on the TV and what do you have to do when you see it? You have to clap. What else did they do? Do you remember what else they do at the audiology clinic? Fern: Everytime I hear a beat, I press a button. Rebecca: Yeah, I know that one too. I'm assuming you would have been with VCH if you were in Vancouver. Leah: Yeah. Rebecca: What about you, Leah? Obviously, it's a very overwhelming process, but once you guys got the testing stuff underway, how did that go for you? Leah: It took a while to get to the ultimate discovery of her hearing loss. We were at the hospital and she had to do some tests there. There were multiple blood tests. The blood tests are tricky for kids, but it wasn't a big deal. Fern is very brave. She was very brave. Then we had multiple doctors that we saw, but we were really on this track at that time to have the tubes put in her ears. What happened was they first had a look at her ears and said she's got fluid in her ears. We thought oh, okay. That's what this is I guess. We were kind of on the track to get the tubes put in and that whole process took a year and a half just to get the tubes put in. We had to wait for the appointment. We actually went up to the [inaudible 00:07:54] at the hospital up there because we [inaudible 00:07:56]. When we got up there, Fern had just suddenly become sick with a cold or flu. We were at the hospital ready to go and they couldn't do it because she was starting to have a fever. It was like, oh no. Now we're back on the waitlist again. We got another date, we drove back up to [inaudible 00:08:15] and we were really excited. Fern was really excited to get the tubes put in. We thought that that was going to solve it or we hoped it would because they seemed pretty adamant that it was the fluid in the ears. However, the thing that was sort of tricky was, there was always this talk about ear infections and I kept saying all the way along she doesn't get ear infections. I don't even think she's had one. Then I started thinking maybe I'm not knowing that she has one. She's an emotional toddler and she has her highs and lows. Maybe she's just uncomfortable and she can't communicate. The doctors assured me like no, you would know if she had an ear infection. It was a little bit of a frustrating thing because I was saying a lot that she doesn't get them. She never had an ear infection. Then I was hearing kids can get ear infections all the time and they are sort of repetitive and it's the fluid thing. We just went through the process of we got the tubes in. Almost immediately after getting the tubes put in, they had a look and it didn't correct the hearing loss and there was no fluid. The surgeon actually told me there was no fluid when they put them in, but he said we put them in anyway. Rebecca: Just in case. Leah: I was like [inaudible 00:09:43]. Then we started a different test. I guess that's when we started sort of the blood test and the test at the hospital to see what else is going on. That was August of 2019. Then by October she was getting her hearing aids. Rebecca: With the audiology testing, there can be all these pieces that need to be put together to diagnose what kind of hearing loss it is. You know when they put that thing in your ear and it makes a little pressure, you may not remember Fern, but it kind of places it in your ear and this pressure feeling for a second, then it goes away. That's giving us an idea of whether or not you have fluid in your ears. Sometimes, if that shows flat, then it's an indication it could be fluid, but it's just one piece. Fern: I don't think I have fluid. Rebecca: No, yeah. Leah: The last time we went to the doctor, the test where they showed the mountain? If you have the mountain on the screen, then everything is good. Your mountain was flat last time because you had a bit of a cold still. Rebecca: It could be so tricky sometimes. Fern: My ears are plugged. Rebecca: Your eardrum plug. Fern: My ears are always plugged and they are still plugged sometimes. Rebecca: Really? Fern: Just sometimes, not usually though. Rebecca: You managed to get a full diagnosis later and then you find out that she was going to need to get hearing aids? Leah: Yeah. rebecca: How was that? Was there anything that you guys were really confused about, had questions, or kind of wish went differently? What went well in that [inaudible 00:11:41]. Leah: Once we were working with the folks at the Vancouver Audiology, everything was pretty straight forward and it was clear. I do remember that there was never really a name for what she had. That was kind of strange to me because usually, it's this condition and it's got this name. You can Google it obsessively and read all about it. I don't remember us really being told what exactly it was called maybe because that's sort of a broad sensorineural. Is that the right term? Rebecca: Yeah, sensorineural hearing loss. Leah: I think I was sort of searching for a specific name as opposed to just hearing loss and it can be solved with this. People asked us and still ask us all the time what is her hearing loss and what is it called? It's a little hard to answer because it's sort of the more broad term. Rebecca: I was just going to say 50% of hearing loss can be genetic and then the other half can be unknown. A lot of the time, parents who don't have hearing loss will have a child with hearing loss and there's really no known cause for it. Sometimes those are conditions associated with it and sometimes there isn't. She was born with sensorineural hearing loss and there's no real cause or at least, I don't have her chart and stuff, but my guess would be, it is just an unknown reason and it can happen. Leah: I think that just took a minute to kind of understand and to be able to answer everyone's questions. Then there were a lot of questions about, like is her hearing loss going to get better or worse? Or stay the same? There was a long period of time where we were just saying we hope it's not going to get worse. We know that it won't get better, but we're just going to do the tests. Rebecca: Keep testing. Leah: If it stays the same, then that's good. Rebecca: How often do you go to get your hearing tested, Fern? Fern: Every once a month. Leah: [inaudible 00:14:07]. I think it's every six months. Although we are in a weird time right now. It's hard to know. Rebecca: My guess would be every six months then eventually it will probably be once a year. Leah: So far her charts have been the same, basically the same with sometimes if she has a cold, the pressure thing. Her reading has been a little bit different. Rebecca: Were you fit in your hearing aids right before kindergarten? Would that be right? How was that? How was getting your first pair of hearing aids? I can see that they are pink. I think they are pink. Are they pink? Leah: Do you want to show them? Put it right to the green light there. Rebecca: Oh, very cool. I love the purple sparkles. Leah: Do you want to tell Becca what we call your hearing aids? Fern: [inaudible 00:15:22]. Leah: No? Can I tell her about that? We wanted to make sure that Fern knew that this was a really exciting thing happening and she was getting these hearing aids. We call them robot ears. We still call them robot ears, although Fern is starting to like us to call them hearing aids now. That's kind of interesting. We were really hyping the robot ears. We hyped it so much that her twin started to get very jealous. Sometimes she lets Winter put them in his ears so that he can hear what it sounds like when she has them in. Winter likes to put in your hearing aids sometimes doesn't he? Fern: Yeah. Leah: But we hype the robot ears. Rebecca: They are kind of like robots. They are pretty high tech, what they have to do. They are very specific to your ears. What were some of the things that you started to notice Fern once you got your hearing aids? There are some sounds that I think maybe you have heard for the first time? Like the wind? The trees? Leah: Do you want mommy to talk about it or do you want to talk about it? What happened when we came out of the clinic with your robot ears for the first time? Fern: It's really loud. Leah: What could you hear that you couldn't hear before? Fern: The wind, the trees whistling, and that's it. Leah: That's it, you noticed. Rebecca: There are sounds that are hard to hear. Leah: One of the things we noticed early on when we started to do our own testing was when we were reading stories to the kids, we would be speaking really low or whispering. We realized she couldn't hear us. Around two and a half, your reading stories and the kids are engaging, listening to the words, and looking at the page while you are reading. Fern was sort of disengaged and couldn't really focus. Then she would start to tell us I can't hear you. We realized that we were whispering. My husband and I were starting to do a little test where we would sort of whisper to her ear or we would go like this [inaudible 00:17:52] and see if she could hear. She wasn't looking at us. I do remember the first time we did the whisper test and we were like, okay. It was so clear that she wasn't hearing us at that lower frequency. Rebecca: Did you notice anything with her speech and stuff to kind of improve in some of those softer sounds like s and t are really quiet? Leah: Totally. Also, the speech language pathology helped a lot. Fern and Winter both did it together, and it was pretty dramatic, just the way that she was speaking. We also noticed when she has her hearing aids, less so now, that her speech would still change with the robot ears out. Specific sounds and words she would kind of revert back to how she used to say those words. That's kind of interesting. Rebecca: Are you guys still doing speech pathology or was that just for a little bit of time? Fern: No. [inaudible 00:19:14]. It's a long time ago. Leah: Yeah, they just went around a bit and then they [inaudible 00:19:22]. Rebecca: That's good. I have a lot of friends that I went to school with that are speech language pathologists. Leah: It was really helpful and it was good for us to go as well to get some tips and help. Little tips like I remember they said to us that Fern is saying something incorrectly. Instead of correcting her, just repeating it back as if you are repeating back what someone is saying and try to enunciate that specific word. That was something that we weren't doing at all before. That was really helpful and I think we still do that actually. Sometimes, we sort of say it back and then enunciate or make the sound and say it louder so she's hearing it. Do you want to tell the story about when you were listening to your teacher accidentally? It's kind of a funny story. Fern: My teacher has a speaker phone and sometimes she leaves it on. After school, she left it on. When I was at after school care, I could hear her inside. Rebecca: That's funny. Those things have a really long range. It goes right through your hearing aids. Leah: That's funny. When I picked Fern up, she didn't have her hearing aids. I was like, baby, where are your hearing aids? Why did you take them out? She said because I was listening to my teacher have a meeting with [Georgia's 00:21:07] mom. It was like a parent interview. Rebecca: That was very good of you to take them out. Leah: That happens. We paired her Ipad to her hearing aids, so if she wants to have some sort of time alone. You also told me something interesting yesterday about how it feels when you take your hearing aids out,when you don't have them in. Do you remember what you said? Fern: Oh, yeah. When I put my hearing aids in, it's nice and loud so I can hear people. When I take them out, it’s kind of nice and quiet because I just like quiet. Rebecca: Do you like it when it's quiet sometimes? That's okay. You are allowed to have a break. Do you wear them all day at school? Fern: Yeah, sometimes they die. Rebecca: Sometimes they die. Got to put new batteries in. I guess they are probably batteries, not rechargeable? Leah: Rechargeable. Rebecca: Oh, they are rechargeable. Leah: There's a little bit. Sometimes it doesn't connect. They won't make it through the day. Rebecca: Oh no. I'm sure we can get that fixed. What about your favorite sounds, Fern? Do you have anything that you really like to listen to with your hearing aids on? Fern: No. Rebecca: What about music? Do you like music? Fern: I like the one where it's like, I can find you in my head. Rebecca: I don't know which one is that. Leah: I think it's kind of a country song. It's a country singer that she likes. What's his name? His name is Ryland, right? Fern: Yeah. Leah: She's got a favorite song. Also, you love the music from Encanto? Rebecca: I haven't seen that. Did you watch the movie Luca? Fern: Yes! Rebecca: I just watched that with my nephew and he went as Luca for halloween. He had a very cool costume. Leah: We just watched an [inaudible 00:23:40] kid show. I think it's called El Deafo. Have you heard of it? Rebecca: No, I haven't heard of that. Leah: It's about a little girl. It's written by the person who had this experience of having hearing aids as a child and then she sort of starts to develop a superhero quality. We watched the first episode and it was pretty interesting. Fern: We watched first, second, and third. Leah: Oh, did you? It's kind of interesting to see it working its way into mainstream content. That's not the first one we've seen. There's been others. Sometimes there's just a character that has hearing aids and it's not really pointed at, but it's there. This particular show is really sort of celebrating it or finding a way to [inaudible 00:24:30]. Rebecca: I have to check it out. Two of the girls I went to audiology school have had hearing loss and now they're working, helping people like you learn how to hear again. That's pretty cool. They've come full circle. Leah: That's cool. Rebecca: What about you guys? Any questions for me? Do you have any questions for me, Fern? About your hearing loss or hearing aids? Leah: No? Fern: Yeah. Leah: I have a question. We've been talking a little bit about sign language and learning it as a family. Fern's hearing loss isn't severe enough that she would need that, but just to engage a little more. Fern: Sometimes when my ears are plugged. Leah: Sometimes when they're really plugged or sometimes at a place like the pool where she doesn't have them in, the sound in there and all the [inaudible 00:25:29] it's really very tricky for Fern to hear in those kinds of environments. Not that we would find a way to adapt and Fern is super adaptable and has figured out from birth to age four to totally thrive and get by with her hearing loss before we knew what was happening. We don't worry about her when her hearing aids didn’t charge overnight or something and she has to go to school without them, she's totally great. We were just talking, as a family, about learning sign language but also as a way to engage with the community a little bit and for her to just feel like a part of something. My question is what you think about that and whether that is something people like us have done? Is it a good idea? Rebecca: It's a great idea.When I was in audiology school—I don't have hearing loss. My dad has hearing loss, but he's 65 so it's not uncommon for him to have hearing loss—I had wished that I had learned ASL. We had interpreters in our class because the students in my class that had hearing loss, they were both fluent in ASL. We had sign language interpreters in our class everyday and it was such a cool added thing for them to have. They were both verbal and they wear hearing aids and can also speak in ASL. It was just this cool thing that they had together. I feel like there's a whole community around it. A lot of people with hearing loss now go to mainstream school. We don't really have Deaf, with the capital D, schools anymore. I think it's nice to keep that aspect of ASL alive and there's so many classes that you can do part time or on the weekend. I think it's a great idea. Fern, do you know anyone else with hearing aids? Fern: My grandpa. Rebecca: Your grandpa? But do you know anyone else your age that has hearing aids? Fern: No. Rebecca: It's fun to meet other people with hearing aids that are your age. Fern: Me and my grandpa are the only people that have hearing loss in my family. Rebecca: Okay. I know lots of people your age that have hearing aids too. You don't know them but learning ASL is like an opportunity to meet other people, so that she doesn't feel like she's the only one with her grandpa. Leah: Totally, I think we should do that. Fern, should we learn sign language as a family? It will be kind of cool to learn a new language. Rebecca: It will be kind of cool if you know a whole nother language. I can only do my name. It's really cool. You can learn the whole alphabet and then you can start to learn words. Leah: I think we will do it. It will be fun to be connected to that community a little bit. Rebecca: Cool. Any other questions for me, Fern or Leah? Leah: You had your hand up. Rebecca: Did you have your hand up? Leah: What were you wanting to say? Fern: I forgot. Leah: What was it that you wanted to say? Fern: About grandpa. Rebecca: Thank you so much, Fern. Thanks for doing this this morning. What are you going to do for the rest of the day? Any plans? Leah: We do have plans. What are we doing? We're going to the Gem & Mineral Show. It's like rocks, gems, and crystals. Rebecca: Where is that? Leah: It's at the PNE Forum. Rebecca: Fun. Leah: It's like an expo. Fern: Not in the museum? Leah: No, it's at the PNE. It's like an expo for crystals, rocks, stones, and stuff. Fern: Mommy, can we go to the museum? Leah: Yeah, sure. We can do that on another day. Fern: [inaudible 00:29:57] today. Rebecca: Thank you so much. Thanks for listening. Don't forget to like, subscribe, or leave us a review. You can also register for our partnership and hearing community website using the link in the description below. [00:30:17]