Ep. 44: Inclusion in the Hearing Loss World

Hello, you are listening to the rare life. I'm your host Madeline Cheney, and I have a solo episode for you today. Today, I want to talk about Kimball's hearing loss, he is hard of hearing. And I want to talk about the need for inclusion in the community.

In this season, we've been talking a lot about inclusion. And I see a huge need for inclusion with in the community. So it's kind of interesting, or we talk a lot about inclusion around our typical peers. But I feel that it is equally important, if not more important for us to find inclusion within different subgroups that were a part of, or my son is. And I want to share our experience not to be overly negative, or to make anyone feel bad, but to kind of point out the need that we have for inclusion, and the effects that can have on families and parents. And I hope that this is an interesting episode for those of you who are who do not have a child with a hearing loss. And I hope you learn something about this unseen world. And I really hope that those of you who are in this world with me feel seen, and especially those of you who have had similar experiences, and I'm sorry, if you have because it's not been an overly positive experience.

Okay, before sharing our story kind of going back and Kimball's hearing loss journey, I want to give you a quick view of where he is today. Kimball is two and a half years old. And he is thriving with his language. He loves it. He loves being able to communicate, he loves sharing what he's thinking and knowing what we're talking about and playing and just all the things that are so impacted by being able to communicate. And life is great. Life is so fun because he has language, but has not always been like this. He wears hearing aids, he's hard of hearing. He has a moderate to moderate severe dual hearing loss. And I know that doesn't mean anything to those not in this world. But for those who are who are. And his hearing aids were great for him. He's able to pick up on a lot of sounds that are surprising to us and to his therapist, because they're harder sounds to hear. I also will put in there too, hearing aids, and cochlear implants and bajas, all these devices, they don't just make your child hear. They don't "fix" anything.

So sometimes people will eroneously compare it to glasses, but it's not like glasses at all. Because with glasses, you just put them on and you can see. But your brain needs to learn how to process those sounds. And hearing aids and other hearing devices will never bring the same sound and level of hearing as our ears do naturally when they're formed typically. But one thing I think that contributes to the controversy over ASL versus LSL, (which stands for listening spoken language. I'll talk about more later on) is that hearing aid technology is getting better and better every year. And hearing aids today are so much better than they were even 10 years ago, and especially 20 years ago and 30 years ago. And so LSL (listening spoken language) is a form of communication that's fairly new. Because it wasn't a great option until recently, because of the way that hearing aids are able to pick up on so much sound so much more than they were able to before. So that makes me really grateful that Kimball was even born as recent as he was and that they'll only get better.

Okay, so I talked about finding out Kimball was hard of hearing in episode 5 in season one, and I'll link that one in the show notes if you want to go back and listen, I talked about what it was like a bit to find out that he had this hearing loss. It was a really, really hard one to find out. We had warnings about things that were huge possibilities because of his syndrome. Before he was even born. We knew about his cervical spine and his nose, not being fully formed and therefore dangerous. And you know, we knew a lot of these things, but we didn't know about his hearing loss, or vision loss. And so it really was a big blow. We were really blindsided by it. Kimball was eight days old, we found out and we were just hanging on for dear life. We were just drowning. He was in the NICU and we were trying to keep him alive. And we were trying to figure out what to do about his neck and which is really dangerous, a really dangerous birth defect. And he was being tube fed and we couldn't hold him yet because of his spine. And we were sitting there in the NICU in medical rounds, when the different doctors and nurses and specialists that are in charge of each baby go around to each bed and kind of chat about their progress and things that they're worried about. And we were there for rounds that day. And just in passing one of the doctors mentioned a failed hearing test. And they kind of glanced at us and then moved on really quickly. And we were like, wait, what he just say what? And after the doctor's left, we turn to the NICU nurse and we're like, Did he say that he failed his hearing test? And she was like, Oh, yeah, audiology will come talk to you later today. And we were like, okay. And there was so much going on. And it was it was almost comical that there could possibly be another thing added on to this little baby that we were trying to help. We were like, there's no way there's no WAY. Like no. But sure enough, the audiologist came and talked to us. And she was super kind and she said, Your son is hard of hearing. And she showed us the audiogram and explained what decibel level hearing loss he had and showed us the anatomy of the ear and after she left I was just I was floored. I was like what? Like there's no way there's no way there's another thing. It was just like "today can just be done. I'm so done. I'm so done with all of this. This is just it was so heartbreaking." So I was trying to be strong. And then as we drove home from the NICU, I just cried, I cried and I was just hurting. I was hurting so bad, because I knew a bit more than probably just your regular Joe off the street about the deaf community because my best friend growing up, and she took four years of ASL and she knew a lot about and she talked about controversies in the deaf community. And so I knew a bit about it. I knew that it was a really intense diagnosis. That's a really intense lifestyle change. And it would impact his whole life. And I was grieving, I was grieving this child that I thought would be able to just talk to me and would hear me and I was grieving all that I knew we would go through and that he would go through and you know, there was a lot of grief involved with all of Kimball's diagnoses and that one was no exception. I was really upset about it. 

So we went home from the NICU when Kimball was three weeks old, and we immediately had Angie from the School for the Deaf come and we met her and I was just bitter. I was like I don't want you guys here. I did wish you didn't need to be here. We're so overwhelmed and drowning. But you know she would come in and then when Kimball was three months old, he got his hearing aids. 

And I think there's just a lot to be said for the Deaf plus community because we were so in over our heads with all these different medical things. We're trying to figure out his feeding tube and he had just gotten a G t got his hearing tube that day and his neck and just his nose, everything we were just, we were drowning. And so hearing aids took a backseat, because I simply had too much. And you know,  I don't really even regret it because I have compassion for myself and what I was going through and you only can do so much. And it was so overwhelmed. So he would have his hearing aids for in for like, I don't know, maybe a cumulative like, patching it together 30 minutes a day, we put them in, they fall out, we put them in then he would take them out. And he slept a lot. And so he really didn't have them in very much. So, at five months old, Angie showed us this simulation on YouTube, and I'll link that in the show notes too. It's a Flintstones video, it simulates the different levels of hearing loss. And it goes through and shows what it sounds like for each level. And when it got to Kimball's level, and it sounded so muffled. And I was like "that's what he hears when he doesn't have his hearing aids in!" And I knew he couldn't really hear without them. But hearing that hurt my heart, and I was like, Oh my goodness, what have I been doing to him. And that was just what I needed to start putting them in more often. So happily I can report at about five months old, I started consistently putting those in. And we started talking about teaching him ASL. And we hadn't really like dove in yet, but we were kind of talking about it. And at that point, we took him into ophthalmology, his eye doctor to see what was going on, because he wasn't looking at us, he was just looking at the windows and the lights. And once in a while his eyes would kind of glaze over our faces. And I could tell it was just by chance, he wasn't really looking at us. And I kept telling them, oh, I don't think he can see, I don't think he can see. And finally we took him in. And they told us that he had blindness and that he had what's called optic nerve hyperplasia. And he couldn't see us. And that has a spectrum. He said that it could affect a person as lightly as being able to see pretty well and use their vision really well. All the way over to completely blind. And so we knew we knew he was only able to see the lights. That's why that's all he was looking at. I could probably eventually do a whole episode about that, too. That was arguably the hardest diagnosis, but especially just added on top of everything else. But we left there thinking "how are we were going to learn ASL, if he can't even see us? How are we going to teach him this?" You know, we knew about tactile sign, which is when you sign into their hands. And people who are profoundly deaf blind do that. And so, were were like "let's just move on. We'll get there when we get there." So a couple months later, we buckled down with ASL. We got a deaf mentor, Alicia, and we love her. And she came over every Monday night. And we would sign with her and she's profoundly deaf. So we could only sign with her. And that was an immersion tactic. And it was overwhelming. And it was scary. But we were doing our best. We were trying so hard. And we were encouraged to sign throughout the day and use as many signs as we could. And we got the little show for Wendy, Signing Time, which is a great resource for learning signs. And I would kind of watch with Wendy and we could learn signs that way. And it was really cool. And ASL is beautiful. And I loved it. And simultaneously, I hated it. And it was so hard and I thought I was going to die. I can't really, it's just the most perplexing situation to find yourself in where you're trying to learn a completely new language. On top of the new medical language on top of trying to keep your child alive on top of taking them to endless appointments, having physical therapy and feeding therapy, and just all of it it was just overwhelming as a vast understatement. And we tried, we tried so hard. And Juston finally was like Maddy, can you ask Angie, like, how needed is this? We need to like be really convinced of this, if we're going to keep going. This is so much.

I think at that point, we were starting to learn the grammar and sentence structure of ASL. We knew a lot of isolated signs. But we started getting into the grammar and that was was next level. That was hard. And so I was like, yeah, I'll talk to her. Because until this point, I have the whole mentality of like, why not? Why not give him two languages. That makes sense. You know, we love him. We'll give him as much as we can. Which is the attitude of a lot of parents trying to figure this out because we love our kids. You know, it makes sense. And I asked him Angie, I was like, Angie, like how much is this gonna benefit him. And you know, that was an interesting conversation. She's not really allowed to give her opinion. But she was very tactful in giving us both perspectives. And she told me when she was getting her degree in Deaf Education, she would take one class about ASL. And she would be like, Oh, my gosh, this is it. This is what every child needs. Every child with deafness needs to learn ASL, this is the only way it's the best way it's so good for them. And then she would go and take an LSL class listening and spoken language, which is based on using a hearing device like a hearing aid or a cochlear implant, and speaking, and she would come from that class like Oh, this, this is the way it should be. This is so awesome. It totally makes sense, it's so good for people, this is what they should do. And so in having that experience, she shared with me how two sided it is, and how those are both awesome options for communication for these children with hearing loss. And so I really appreciate that point of view, because it helps me a lot because there is a lot of controversy over what kind of communication you give your child. And a lot of it is very pro ASL and kind of goes with the idea that every child needs ASL. And so I appreciate that perspective she gave me she was like, you know, you you can just focus on LSL (listening spoken language). Because we did want him to learn both languages. We didn't want him to just know ASL because we're hearing and we wanted to talk to him and, and we wanted him to be integrated in our world too. And he has hearing aids were functional enough that he could hear us and learn spoken language. And she told me, Kimball could be so successful, and he can thrive by doing LSL, it doesn't have to be ASL. And she told me about the adults that she knows that do that. And she told me the family situation matters too, and deciding this kind of thing. And she encouraged me to think about what I really want for Kimball in the long run. And I realized I want him integrated into my world as much as possible. And so there's a lot of research about LSL and ASL and the benefits of both in their own virtue. And there's also this concept called Total communication. And it was really popular in the 80s. And they started doing that. And that's what the idea of give them both. Give them both spoken and sign, but kind of mixing them together. So you could sign some and speak other. And it seemed great, and lots of people did it. And then recent research and following those kids shows that it gives them fragmented languages, they don't have a complete language of either one. So typically, in the fourth grade, these kids will plateau, while their peers move on, and they'll kind of just stay stuck up until that point, they progress really well along with their peers. But once they hit fourth grade, I think it's because they get into more abstract topics. And they kind of plateau because they don't have enough language of either one to really learn that stuff. So in order to be truly bilingual, and for him to not hit that barrier, we need to use ASL exclusively parts of the day, and then talk to him exclusively other parts of the day, or choose certain days of the week that we do each one or have one parent signed to him and one parents speak to him so that he would have complete language for both. 

So we chose to go with LSL for him, and it felt relieving and it felt right. And we were like, hey, let's try this out and see how it goes. We could always go back and teach him ASL if this isn't working. We made that choice also, bearing in mind that we were not devoting as much effort and time to teach him spoken language. Because there was so much going on. Because we were also trying to teach him ASL, because we were also trying to do as physical therapies and we're also trying to help them with feeding therapy and just all of it. We were doing kind of a half baked job for all of it. And so also was this conscientious decision to just hone in on LSL and really give it all we had because he was really delayed and we weren't seeing much progress language wise. 

And during that time, after switching to LSL, I experienced a lot of negative interactions with people. And that is kind of the main point of this episode is how wrong that is. So it was it was just the craziest thing, we would be at the library. I don't know what it was about the library, the libraries where we usually get these comments, but we'd be there for a storytime or whatever, pre COVID. And I'd be chatting with the librarian after everyone left, about his hearing aids. And she would talk about how she knew someone once who was deaf, and she would talk about ASL and I'd say, Oh, actually, we're doing LSL. And it's really great. And we're excited about it. And she'd be like, Oh, well, you know, it's best to give him ASL too. And I was like, What did you say? Like, I don't even know how to respond. Did you just tell me that? You don't know anything about this. You are not in this world. And you just told me to do this. And I just kind of ignored and we moved on. And I said, bye. 

And then a few weeks later, there was a parent at storytime. And I didn't know her from Adam. I did not know her. She didn't even know my name. And we were just talking, you know, like the casual like, "oh, how old is your child? They're so cute" kind of chit chat. And I told her about how we were doing LSL because it came up and she was like, Oh, you should be doing ASL with him that is so good for kids. And I looked at her thinking, are you kidding me? You don't even know me. Why are you telling me this? You don't know anything! Why are you telling me this? Because I think it's so like, it's kind of easy to just think like, oh, why wouldn't you give them both. But like, I just am baffled by the way that people can make those quick judgments about such a personal decision, like communication choice, and without knowing any of the research and without knowing all the "whys" behind it. And that was hard, it was hard to hear that kind of judgment against what we were choosing to do for Kimball. And I already felt really insecure in everything. And just being a parent I was trying to figure things out and how to get through that hellish first to year. And I have a friend (a different friend, another friend who also loves ASL), and she took a lot of classes in college for that, and she meant well. I told her, I explained to her the whole thing and how we were switching over to LSL. And she told me about her cousin who chose to learn ESL, which is English sign language. But she is American and how she's not really a part of the hearing community or the deaf community. And she feels kind of ostracized because of that she didn't really belong anywhere. And that really hit home for me, that really, that was just what I needed to hear to have a complete meltdown. I feel bad for her, but I just started crying. I was like, I don't want Kimball to be left out, I want him to feel part of the community, I want him to be included. And so hearing that and knowing that there's already this controversy of him wearing hearing aids at all, and then just hearing the way she said that, and picturing him in the future, not being included, because of the choices we're making now about how to communicate and what to teach him was really painful. And as his parents, we're just doing our best, we're just trying to figure out what the heck to do and how to help our children the best, and how to help them thrive the best they can, but there's also so much we can do. And I knew what Angie had said and was holding on to that research I was holding on to like the the stories of success and how LSL really could be so good for Kimball. But hearing her talk about him not being included like that or not feeling like he's a part of any community was SO painful. And, you know, I was able to reconcile and, and recommit, like no, I know, this is what feels right. This is what I'm gonna do and I'm the parent. But having that kind of controversy while trying to figure this stuff out is really hard. And I quite frankly hate it. There's no place for that in the community. I have hope for a community for as Kimball grows up, I want it to be a place where he feels included regardless of what he chooses to do, regardless of what we chose to give him regardless of his communication style or what he's wearing on his ears. The fact that what he's doing makes him more or less included is not okay. It's not okay. And it's something that I don't find in any other community he's a part of. Whether it be dwarfism or, or feeding tubes or vision loss, it's, it's just, it's just not okay. And around that time, I wrote this Facebook post. There's a lot of different Facebook groups, for parents of children that are deaf or hard of hearing. And I wrote this post on there just with this fire blazing within me because there are a lot of things posted on there "ASL this and ASL that" and "if you're great parent, you'll give your child ASL. ASL has this benefit and that benefit". And I just wanted to speak to the validity of choosing LSL. And so I made a post on there about our decision. 

And I had a picture of Kimball on me snuggling together and I felt very vulnerable. I put myself way out there. And I talked about the need for us to come together and to be supportive of each other and loving of each other while we're all trying to figure out what to do and what's best for our own child personally. I compared it to the Fed is best campaign for breastfeeding versus formula and said "communication is best." Like we need to give our children communication and we need to be supportive of each other. Regardless of what type of communication we choose. And I've heard of social media trolls and, and bullying that can happen like cyberbullying, I guess. But up until that point, I had not experienced that firsthand. And I was thrown under the bus. Quite frankly I was traumatized. These parents were so mean to me. After reading this , you probably think I'm super emotional. But I'm not. I'm not this super sensitive woodland creature. But these parents were chewing me out and and they were saying things like, "well, we'll see if it works. But I've not fun playing catch up." And a bunch of people like liked that comment. People were saying, give your child ASL. That's not okay. And explicitly calling me a bad parent. And it was so hurtful. It was so hurtful because I pictured this being this post where everyone came together and like, yes, we love you till you're right. There were such hurtful comments. And they were such personal attacks on me as a parent. And it was such a sensitive spot as I was just trying to figure out what to do. And I spent the weeks after that, just crying constantly, because it was just, it was such a hard thing. And Kimball was still not making progress. And it was just so frustrating. And I was just doing my best and bless Angie, I just kept going back to her and saying like "Angie, they're like attacking me" and she was so supportive, you know, she helped me and she reaffirmed the logic in our decision and how it really could help him and and I got really turned off towards ASL. I hated ASL because I was associating that with these parents that were so mean to me. And I also came to find out later, that that's not that's not uncommon, in fact, is quite common for other parents to to be thrown under the bus for using terms like hearing loss or hearing impaired, especially new parents. And I've seen it firsthand. It's, it's heartbreaking, these new parents will get on these Facebook groups, and they'll say, "I'm so heartbroken, my child just failed her hearing test. And I feel so lost. I don't know what to do. And I never knew I'd have a child with hearing loss. And please help me." And then just comment after comment of these people being so mean just saying like, don't call it hearing loss. That's not what it is. These parents are looking for support and love. And that's not what they're getting. They're getting these bullies. I know, it's not the entire community. And I this is just my experience. But these Facebook groups have a reputation for being really, really mean and in your face about ASL. And a lot of parents leave. As I was doing a little research, I saw so many parents saying "I'm out of here You guys are so mean. And I've been bullied and I don't need this kind of negativity." So I even I created a new Facebook group and we're just starting out but it's inclusive, parents of Deaf and Hard of Hearing because it's just not okay. It's just not okay that these groups are just are so charged and nonsupportive in places where people are looking for support. 

So back to my story. We dropped ASL completely. After that I talked to Angie and I was like, "You know what, let's drop all the signs." Because at that point, we were still doing some isolated signs, some more like baby signs. And we were doing things like "milk" and "paci". And I was like, No, no more. I think that's making it so he's not verbalizing, because he knows how to do "milk" and "paci". Let's just drop it off. So we dropped it. And I have to say that was definitely from a place of bitterness.

And he plateaued, he seemed confused, he was doing worse than ever, because we took away those signs that he already knew and those were the only ways he knew how to communicate. And then Christmas came and we had a Christmas party at the School for the Deaf. At this point Kimball was 18 months old. And there was this mom and her little boy. And they were doing ASL and they were signing to each other. He was the same age as Kimball. And it was so precious to see him communicate and see how happy he was. And I was like, "Oh, that is so cute." And I'm not sure exactly what it was, but it kind of hit me like I need to introduce isolated signs for Kimball, I still feel very strongly that LSL is the route for us. But I want to integrate isolated signs again. And I felt this fire I felt I felt so determined about it. And I talked to Angie again. And I was like Angie, I want to do this. And she was so supportive. She was like, okay, we'll do that. And at this point, we knew a lot of isolated signs, well over 200, because we had been learning ASL before. And so we started throwing in those signs throughout the day, along with our spoken language, the complete spoken language, but we would add the signs as a supplement. In just that month of December, he went from two signs to 25 signs just in one month. It was amazing. It was it was just what he needed. And it was just so thrilling. And he was so happy. He was so happy to do his little signs for cracker and window and light and, and milk and paci. And it was so thrilling. And from that point, Kimball has just continued to climb in his language development. And it has been so fun to watch that smashed through that brick while we were just pushing up against for so long. And he eventually as the months progressed, and he learned so many more signs, and he started verbalizing he had saying the words too. And as he learned the spoken words, he started dropping the the signed words, I think a lot of that was because he felt like he didn't really need them anymore, because he could just say them. And so we followed his lead, and we dropped off those signs. Now he speaks really well and that's something that I'm really proud of, because it's been a lot of work, not just up to that point, but also past that. And we just recently did testing for his vocabulary. And he is seven months ahead of the average for his typically-hearing peers, age-wise. 

And it's been such a fun journey past that point to watch him thrive and to see how much he loves communicating with us, and how much he loves his hearing aids, when the audiologist would take out his hearing aids to do a booth test, he would cry when they took him out because he loves them so much. And it's just such a part of who he is. And we are so happy. 

And it's not without its work. Again, hearing aids don't just, you know, fix hearing. So we've learned a lot of different techniques for LSL. LSL is not just a cop out, it's not doing nothing. There's a lot of work that goes into that and a lot of techniques that we've learned with Angie and that we use with him. And it's been quite the journey. But I I've learned the importance of following his lead. And I think that's a really something that I want to leave with parents too, is to follow your child's lead, even though that can make it a very messy adventure of a journey in figuring out what they need or what they want or what's best for your family. But I feel really good about where we are right now. And in the future if Kimball decides that he wants to learn ASL, we will 100% jump in with him and learn it all together as a family and we will support him and it'll be awesome. For right now, though, LSL is what seems to be the best choice for us. And that's our that's our journey. And so that's the path that we've chosen. And for those of you listening, who are my fellow LSL parents: you are not less than. You are not failing your child. They absolutely can thrive with that. And your place as a parent can never be taken. Other, maybe well meaning, parents who try to throw their opinions down your throat, that's that and it's unfortunate. But you are the parent, and you know your child and you're doing your best. You are absolutely the person that your child needs, and you will figure this out. 

And I dream of an inclusive community for my son and for all the children who are born with hearing loss. And I dream of a world where parents are completely supported and loved in whatever choice we make, whether it be ASL, LSL, or whatever, as long as we are giving our children communication. And I dream of a world where our children are welcomed into the community, regardless of their mode of communication, or lack or presence of hearing devices. And I think it starts with you and me of just being loving, supportive members of this community. And we can never underestimate the power of being kind and supportive. 

You can find me on Instagram @the_rare_life where I muse about my life with Kimball and share episodes as they are released. If you found value in this podcast, which I sure hope you have, please help support it by donating via Patreon. Even $5 is so helpful. There'll be a link in the show notes for that. If that is not your thing, a rating or review on iTunes or sharing it with a friend is so helpful in helping others find the podcast here. Also, I shared the story on the All About Audiology Podcast and that was a really fun one. If you want to hear about our hearing journey as a conversation with an audiologist, or if you just want to find a really great podcast created to support us in our journeys with children with hearing loss. Check it out. link in the show notes. Join us next week to hear The Story of Emery from the popular instagrammer behind @mothering_rare. It's a great one. Don't miss it. See you then.