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All About Deaf Plus and Rare Disorders – Episode 41 with Madeline Cheney

Welcome to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein and today I have with me Madeline Cheney from Utah, who is also the creator and host of the Rare Life podcast, which is a podcast for parents whose children have rare disorders. And we are very excited to have Madeline with us.

LS: “Welcome, Madeline!”

Madeline: “Thank you so much. I’m so happy to be here.”

LS: “And I’m so happy to have you on the show because one of the things that we have not talked about yet so much is children who are deaf plus, or have multiple things going on and challenges in different areas. It can be medical concerns, social concerns, all these other things where hearing loss may or may not be at the top of the list of priorities for themselves and their families. So, I think this is a very important population, a very important topic, and I’m really excited to chat with you today.”

MC: “Thank you. I have a lot of passion about this topic since his (my son) hearing loss is a really big part of who he is in our life since he’s been born and so I’m really excited to talk about this.”

LS: “Alright, so why don’t you start by telling us a little bit about yourself and a little bit about your inspiration, your little kiddo?”

MC: “Yeah. So, I live with my husband and my four year old daughter, that’s Kimball’s big sister. And she is completely typical in every sense of the word. In fact, she was even advanced in her language skills. And then Kimball is our almost two year old and he is our little special guy with a lot of different disabilities. And so, we have been dealing with that since, well really he was pre-diagnosed when I was pregnant with him. And so, that really, when he was 20 weeks gestation, that is when this roller coaster started, and we’ve learned a lot since then. I feel like a whole different person now.”

LS: “Yeah, yeah, absolutely. And I think that’s such an important point to mention that it really changes everything. It doesn’t just effect the child and what their life is going to be like, but it changes the parents’ life. And that, obviously, even when you know about it in utero, and sometimes you have more time, sometimes that’s better, and sometimes that’s more challenging. So, what was that like for you guys when you had that time?”

MC: “So, because we knew pretty far in advance before he was born that he had this issue, his specific condition, it has a really long name that no one’s heard of. So, I’m going to spare you but it is a form of skeletal dysplasia, which basically means issue with his bone formation. So, there are birth defects that were related to that. And so, we were given warning about different things like he has an unstable cervical spine, which basically means that the vertebrae in his spine are not fully hardened, and so it doesn’t protect his spinal cord from compression, which would lead to paralysis or death. So, like that was something we knew was on the table that’s associated with it. We also knew from ultrasounds that he did not have a nose bone forming. And so, he has a really narrow nasal airway. So, we knew a few things like that. But there was very little known. He also has dwarfism, which we were also able to see, that was one of the red flags we saw is that his limbs were measuring shorter for his gestational age.

But hearing loss is also associated with his syndrome. But we were not warned about it at all, we had no idea. That’s such a huge part of who he is in our life, his hearing loss, like that’s one of the forefront things of our life. Like that’s what we’re dealing with all the time is helping him learn language and things like that. And it was huge, we were very blindsided by that diagnosis a week after he was born. And so, we were given a heads up that he would have a lot of birth defects and difficulties but as far as his hearing loss, and then later we discovered his vision loss as well, he has a dual sensory loss, we were not prepared for the hearing loss thing. And so, that added a lot of complication to the process of grief that we went through learning that news.”

LS: “Yeah. And the fact that you just mentioned the process of grief, I think that many people who go through this might not recognize that as, like, that’s what they’re going through. But naming it and accepting that that’s kind of the process that’s ahead, can really be actually very helpful to some people to know, ‘Oh, this is very similar to other kinds of grief in life, where it’s like cycle and it’s not just five stages in order.’ It’s more like a star I think, because you like ping pong from all the different places, to go this you, go that way. So, yeah, it’s definitely interesting that you had some awareness of things that were to come and then actually there was this whole other thing that came up.

Wow. So, my audiologist brain is like, ‘What kind of hearing loss? Which part? Like the middle ear, the cochlea bone, the bones of the cochlea, or like middle ear bones?’ “

MC: “Yeah, so, he has a dual loss with the conductive bones. That’s why it’s associated with his syndrome because it’s another deformity of bones that did not form correctly. And then, he actually also has a sensorineural loss in one of his ears, which was really interesting to ask because we were like, this is supposed to be a bone issue. And there are other organs involved like his vision loss, he has an optic nerve hypoplasia. So, that just means that nerve is short. So, there are other organs involved, but that was kind of interesting to us. And his hearing loss is he is mild to moderate in both ears.”

LS: “But yes, it’s very interesting. The cochlea is housed in a bone, a temporal bone. So, even though sensorineural is more about the nerve cells, definitely bones are involved. There you go.”

MC: “So, yeah, it’s been a while since we’ve gone over the anatomy of the ear with his audiologist.”

LS: “So, was he born to term?”

MC: “Yeah, he was. And that right there has its own story, but briefly, I had a lot of excess amniotic fluid when I was pregnant with him. And that was part of his issue where he wasn’t swallowing the fluid, like he should be, like most babies do. And so, I had a lot of excess fluid. So, I got really big, and he wasn’t that big when he was born. He was six pounds, like my daughter, I have two small babies. And we had a scheduled induction. And it was at 38 weeks and it was kind of this like, will he make it that long? Like will he be born quite early because your body thinks that you’re further along because your uterus is so big, because of all the extra water and so that added a really big fear into that. But he was born term and he was born a healthy weight. He was, I think it was six pounds, eight ounces. And so, that was really helpful. In hindsight, I don’t think he would have survived if he’d been born premature, so, I’m now looking back. I’m really grateful that he made it that long.”

LS: “That’s amazing. Oh my God!”

MC: “You just gave me chills.”

LS: “Yeah.”

MC: “Yeah, I think when you get close to losing them, it just really does make you like, wow, if this one thing had been different, we wouldn’t have him here right now. And so, it is really chilling to think about it differently. I don’t know, there were a lot of moving parts to it and to think about them going wrong, it’s really scary.”

LS: “Totally. So, did he have a newborn hearing screening right away?”

MC: “Yeah. Because they knew it was on the table. We had no idea, I think they just didn’t think to tell us or they forgot or something. But we were there during rounds while he was in the NICU, that’s just when the different, like all of his, I mean he had this huge team of a dietician, and main doctor, and all these different people that were in charge of NICU babies. And so, they would go from child to child and kind of collaborate with each other on how they were doing. So, they did that on a daily basis, and we tried to be there for rounds. So, we were there and they kind of went through different things. And then they were like, ‘Oh, how did his newborn hearing screening go?’ And they were like, ‘Oh, he failed that.’ And then they kind of moved on. And I was like, ‘Wait, what did he just say? He failed it?’ And so after they had left, I asked the nurse, I was like, ‘Did they say he failed the newborn screening for his hearing?’ And she was like, ‘Oh, yeah, some audiologist will come talk to you about that.’ And I was like, okay, we were already dealing with a lot.

He has a lot of medical complexities. So, we were already dealing with far more than we could handle. And so, it was almost comical to be like, ‘Nah, there’s no way he also has a hearing loss.’ And later that day, the audiologist that is in charge of NICU babies came in and she was like, ‘We did an ABR right away.’ They jumped straight to that because they knew that he was higher risk for hearing loss. And at that point, he tested profoundly deaf in his left ear and moderate to severe in his right. Later they did an additional test, I think it was two weeks later, to kind of retest that and his left ear actually came up to the level of his right ear.

So, the beginning when we first thought his left ear was completely deaf, we were talking about cochlear implants. And she explained and showed us the little picture of the ear anatomy and all that and it was really a sucky day. I wrote that, I was looking through my NICU journal or I recorded stuff about when he was in the NICU, and that’s what I wrote about the day I was like, ‘Today we found out he is deaf. And what a sucky day.’ And it was. One way I can describe it is, it was kind of like our son Kimball was this house, and we knew a bomb had gone off inside and we knew that there were certain casualties like we knew like his neck, it was not stable, and we knew that he didn’t have a nose bone, but then it felt like we were walking through the wreckage and finding these other casualties. Like his hearing, we thought he’d have that, like that’s gone too and like these different parts of him that were broken, and later we found out about other, we had a lot of other diagnosis that we later learned about, like his vision loss. And it really was a grieving process of a part of him, it felt like it was gone, like it had died or something. Like this life that we had envisioned of him just hearing typically, like we just expected that, and to all of a sudden be thrown into that.

I had a best friend growing up was really passionate about American Sign Language. And she took four years of it and she was really good at it. So, I was exposed to that earlier in my life. So, that’s where my mind immediately jumped. I was like, we’re going to be doing sign language with him and the idea of learning an entire language, while we were already drowning with everything else. I think that is one thing that really added the magnitude of this, of this news that he had this, that moment. I mean, that was one of the hardest moments while he was in the NICU, and that is saying something because we had a rough time but I just cried and cried and cried as we drove home and I was like, things cannot get harder. But it got better. I adjusted. It didn’t end there.”

LS: “How many days, or do you measure it in weeks, how long was in the NICU for?”

MC: “He was there for 22 days. And it felt like a really long time especially having our older daughter and trying to balance that but there were people in there saying, ‘We’ve been here for eight months and we don’t know when we’re going home.’ So, that’s chump change. I mean, I’m really grateful of the short amount of time we were in the NICU, that really was a blessing.”

LS: “And it’s the kind of thing you don’t really measure comparatively, like each day, each moment in the NICU is its own, like you said, its own world. You don’t know what’s it’s gonna bring.”

MC: “Yeah, it was such a roller coaster.”

LS: “Yeah, you know, you mentioned that first rounds where you first heard about this but it was kind of brushed aside, because like it wasn’t on their radar. This team that’s doing the rounds they have what they’re supposed to do, each one from their own perspective of their specialties. They’re like, I’m here for kidneys. I’m here for GI, I’m here for, like, each one just kind of looks at the breathing, obviously, the things that are life sustaining as high priority and like, it’s really unfortunate and part of the reason we do the podcast is to get some education out there for everybody that this is not a trivial thing. Hearing loss is not in the back burner. It’s actually pretty important.

On the other hand, I also recognize, you know, in the conversation of Coronavirus, like, is audiology essential or non essential, like is it emergent to be able to hear and communicate and be involved in your life? If that’s your communication method, you know? Or are other things taking precedence and it’s really a case by case situation. But I can, you know, I can kind of see the doctors being like, ‘Oh, this isn’t relevant right now when he’s in the NICU but for you guys that’s like, well, what is his life gonna be like?!”

MC: “Yes, it was so life altering. It was such a life altering thing. And so, I do think that they could have been more sensitive about it.”

LS: “Yeah. I’m glad that you did have a meeting with the audiologist though, to be able to have some information and some answers. But yeah, that is definitely like you said, a sucky day. Tough and difficult. And I think for our audiology students who are listening, you know, we have maybe one course, maybe one day or two lectures on handing over news, but like, you can’t learn that in a lecture. And so, that’s why I was listening to people on the other side of the conversation to see what what would have helped you. What did you need to hear? And how individual that is also, like, you’re not going to sound a checklist, right? What does the other person need, you know. Some parents are going to be asking questions, some parents are not going to be taking anything in.”

MC: “Right.”

LS: “So, what advice would you have for our listening students and audiologists?”

MC: “I think recognizing that individuality of where each person is. I’m a part of a lot of different Facebook support groups for different hearing losses. And it’s interesting to see where someone will post like, ‘Oh, I’m so devastated. I just added this group, because I found out my child has this hearing loss. Does anyone else feel this sad?’ And then there were some people who were like, ‘I was ecstatic, because I have a hearing loss. And then to find out that my child has one was actually super exciting for me, because we could relate with that.’ So, that makes sense.

There’s such a range of feelings that can go with it. And I think, I’m not going to make a blanket statement, but I think for a lot of hearing parents, it is a grieving process. And if you are listening to this and you are the one that delivers this news, I would treat it like you’re telling someone that they have cancer or something like that, and maybe not quite that drastic, but there is this part of them that kind of feels dead. Like it feels like there’s a part of him that you expected to be there and functioning and you took for granted and now that’s gone. And so, that really is life altering news. And I think maybe just delivering it with that kind of sensitivity, and knowing that it probably will be something they grieve, I think that could go a long way with the way the news is delivered and explained.”

LS: “And I think, you know, I really value you Madeline coming and telling that to everyone because we can talk to each other, you know, professionals and say what we think is good, but it really comes down to what the patient in front of you wants and needs. And you know, it’s interesting, because I feel like some people might actually hear what you say, and then say, but it’s not cancer, you know, don’t say that it’s this big devastating thing when maybe for them, it’s actually good news or news that there’s things we can do. As opposed to something that there isn’t. It’s really individual.

And another thing you mentioned about the groups is, I think it’s so important to find a supportive group of parents. Because not only does that give you validation, it also brings in that other element of, ‘Hey, other people are experiencing this differently than me.’ And then you can learn from that how other people are handling it.”

MC: “Yeah, totally!”

LS: “Which can be positive. And it also can be difficult to see at other times, so you know, you gotta just do a balance and see if it’s helping you or if it’s being detrimental, right.”

MC: “I feel like I could talk about that negative Facebook experience right now. Do you want to talk about it now it’s about ASL…”

LS: “Totally, totally!!!”

MC: “So, I can’t not tell the story when you’re talking about positive and negative aspects to those Facebook groups. And this is just my experience in this group of people. So, I’m trying not to think like the whole Deaf community is terrible, and I don’t feel that way. About a year go, we stopped going full blown ASL mode. Before that we had a deaf mentor. We were trying to sign as much as possible. And I can go into the details of this later, but we had a lot of discussions with his hearing therapist that we were seeing very regularly and we decided that we wanted to focus on auditory and spoken language with Kimball. And that felt really right to us. And I was really reflective about it. And on this specific Facebook group and kind of in general, I feel like there’s such an emphasis on American Sign Language, but not so much about auditory oral. And I was like, I feel like there’s something I could do to kind of impact this kind of culture of, this is the only right way.

And so, I made this Facebook post and I had a picture of my son and me playing. So, it was very vulnerable. I really put myself out there and I just explained in there my feelings about how we just need to support each other in our various journeys and what we feel like is the best route for our child as far as language acquisition, and that every child needs communication. So, I’m not saying don’t teach them anything, but kind of like the ‘Fed Is Best’ campaign with breastfeeding or bottle feeding and all of that kind of thing, where it’s like, as long as they’re being fed, that’s what matters. And so, kind of like bringing that over to language and what kind of communication you’re giving your child that as long as you are giving them communication and you really are doing the research and you’re making an effort, that is what matters. And I was like, ‘We need to support each other and make sure to help each other or to really just give each other support in our various decisions, whether or not we agree with them or that’s what we’re doing.’

Okay, so, that was my post. And then in response, I got this onslaught of the most personal attacks I have ever received. I was floored. I felt so bullied. Because I kind of explained in my thing, my son has this issue, has this issue, has this issue, like all these birth defects, these are what we’re dealing with. And and I kind of used that as the beginning of my post. And they were like, ‘Well, my child has issues too and I’m teaching them ASL and you’re depriving your child and you need to teach them right away.’ Or this one mom ended with, ‘Well, your child is going to fail. Good luck playing catch up when you realize that they need sign language.’ And there were just these comments after comments of these really mean personal attacks, and I felt so vulnerable and just hurt.

I was so hurt and I honestly had a lot of trauma from that experience, which sounds dramatic, but because they were such personal attacks telling me I was depriving my son, that I was a bad mom, like they literally were saying that. I’m not this sensitive little woodland creature. I’m really not and having those attacks, especially back then because a year ago, I was struggling a lot. Kimball had a lot more going on, we’ve kind of leveled out now where we kind of have our groove, but we were really struggling. And to have those attacks from these other parents where I was like, ‘But you know what I’m going through, you know how this is, and you’re attacking me.’ And it was this place where I expected to get all of this support. And there were some people who are brave enough to say like, that’s great. ‘You’re right. I loved reading this, I needed to hear this.’ But there were those personal attacks, I went to my therapist to recover from them, they were that damaging.

And it really helped me become even more passionate about what I wrote that we do need to support each other like, ‘Oh my gosh, this is perfect. You are proving my point. Look at all of these attacks about the route of language I’m choosing from my child, and I don’t know, you don’t know me and you’re attacking me in this way.’ And so, anyway, I guess my point is that we do need to support each other and accept each other and recognize that every child is so different and every family is so different. And I’m learning to really follow Kimball’s lead and what he needs and what helps him learn language. And I’m able to project in his future, ‘What do I want for Kimball?’ And our therapist (his hearing specialist) is so good. She’s so good at helping us look forward. Like, what do I want for his life in 10 years? What do I want for his life in 20 years? Where do I see him? And in order, like when we look at it in that perspective, it really helps to make these kind of decisions based on what we want for Kimball and what we think is best for him and not every child out there.”

LS: “Wow, that does sound like a traumatic experience. And I have to validate that because that’s actually something I bring up in my advocacy workshops that I give to groups. Trauma is not only big, giant devastating things. Trauma is your body’s response to not being able to take in something, like you cannot process the incoming event. And so, if somebody is overwhelmed, like nervous system in their body by incoming information, that could be someone yelling at them, that could be someone cutting you off in traffic, like it’s more about your state and what you can hold, like your capacity to take things in, versus what the actual thing is. So, usually really big giant things like car accidents, death that’s in the family, or losing your job, those are usually traumatic because they are a lot to handle for even someone with a high capacity. But, you know, it doesn’t mean that people have higher or lower capacities as a judgement but more of how much your body can take. Your psyche and your nervous system and your experiences and your childhood and all the things that make up who you are, your personality, your resilience and trauma is not something to be ashamed of. It’s actually something that shows you the places where you are vulnerable like you said. So, you are coming already from a place of being so vulnerable. And then this thing happened where perfect strangers are attacking you for your choices, specifically where you thought they would be supportive. I totally get that.”

MC: “I expected support. I expected this rallying and I was like, this will be so great. And it was the total opposite.”

LS: “Kudos to you. Kudos to you for having a therapist, for processing your trauma because otherwise what happens with trauma is that it just keeps cycling back and coming back to that. You keep getting triggered back to those difficult things.”

MC: “Totally!”

LS: “You are amazing.”

MC: “Thank you!”

LS: “I moved through that now. Here you are talking about it and doing podcasts and supporting other people with this exact message. So, I hate the people who are like, ‘I’m grateful for my trauma.’ No! I’m not grateful for it, but I eat it. Hahahaha.’ “

MC: “Yeah, like I’m not letting them control me anymore. I kept that thread and those comments kept coming back and coming back in different situations. And it was great to be able to work through it because we were working through other stuff. And she was like, ‘Okay, are you good?’ And I was like, ‘I feel like we need to work through this.’ And this doesn’t seem like a big enough thing to have to work through at face value. But it was traumatic. So, I like what you said, it doesn’t matter. It doesn’t have to be a big thing. Like it was a really life altering thing for me just because it affected the way I felt about myself.

And it kept coming back in different ways. And one example of how it came back is after that, do you know I felt so much more turned off about American Sign Language? I wasn’t negative about it before. I still felt like it was this beautiful language and I did still feel like that it is a great option for a lot of people. It’s the blanket statements that I have a hard time with. I was so turned off, so I told his specialist, let’s just drop the signing. At that point, we were still at least doing isolated signs. So, it wasn’t the whole language but it was kind of like baby signs. But we were doing a lot of them. We were doing words like, I don’t know, milk and just a few because he didn’t have any words yet. And so, I was like, let’s just drop the signs all together. I feel like because he knows how to sign milk that’s making it so he’s not trying to say milk verbally.

And so we dropped it and he was just so confused after we dropped it because he still wasn’t able to articulate it and say anything and verbalize anything. But then we took away the sign. So, he had no way of communicating and that felt really yucky.”

LS: “And that’s where all those thoughts come in. Because the people are like, ‘You deprived your child…’ “

MC: “Yeah, and I felt so charged about ASL because I kind of like categorized it with that. I was like, but we’re not doing ASL because, I don’t know, I felt more defensive.”

LS: “But then here’s what you didn’t do. You didn’t just say, Ok. That’s it, you’re never going to be able to tell us that you want milk. We’re dropping this and you have no other option.’ But I’m assuming, given what you’ve told me that you were keeping him in sound and your head is hearing aids. Oh, yes, yes. And you’re creating an environment with tons of sounds and working on sound environment. And you had your speech therapist with you. And yeah, appointments. Like you were then committed to some other person.”

MC: “Yes. Totally. We were doing all the right things for him to learn auditory language. It was really interesting, though, because we did the target vocabulary, we were doing all the different things. We were very proactive. And he still wasn’t picking up on any of it. And I think that went on, I think when I said, we’re dropping ASL, because this was a little bit after that post. I mean, this is over the course of like nine months. So, then we said no more ASL. That was like for a couple weeks, like a two or three week period.”

LS: “Not like five years. Hahahaha.”

MC: “Right. Right. Right. During that time, I was like, ‘This is not what we should have done. He’s not thriving with this.’ And so, then I went to this event for Christmas. It was at the School for the Deaf. And so, there was a lot of signing. And it was really interesting to me because I was like, ‘Oh, I do love sign language.’ It kind of revived the good feelings towards it because I kind of became bitter because of that one Facebook experience. But being there, I was like, ‘I do love this.’ I kind of felt this little fire reignited inside me. And I remember this little boy interacting with his mom and he was about Kimball’s age. And he didn’t have anything else going on medically. But it was really cute because he would do his little sign and then she’s like, ‘Oh, you want your water.’ He was able to communicate with these isolated signs he was doing.

I remember watching him thinking, ‘I want that. I want Kimball to be able to communicate. If it’s in sign language, that’s great.’ I felt this truth, it was so real to me. You need to be doing more signing with Kimball again. I was like, Okay. And so, that was a little confusing, because I felt like we already made this decision. I was like, but we’ll do signs with him. And at that time, our main focus was still auditory oral. But I felt like we needed to introduce more signs to him to give him more ways to communicate. He really wanted to communicate and we knew that through a lot of different ways, but I could tell he wanted some kind of tool to communicate, because cognitively he is typical. And so, he had a brain of an 18 month old but wasn’t able to connect with us in a way of language.

And so, I was super excited about that. It felt so right and so I talked to his hearing specialist and I was like, ‘Angie, I want to add in isolated signs, like more baby signs. We’ll keep saying the word and going the auditory route, but using the signs to supplement,’ and she was like, ‘Great, we’ll do that. We’ll switch to that direction.’ And because I had already been learning American Sign Language before when we were initially going to use it as his primary language. I had a lot of vocabulary from that. And so, that was awesome because I could give him the signs for so many different things. And you know what, the next month he caught up for his age, he is caught up completely with his peers that are typically hearing. And when we started using those signs, he was six months delayed. He rocketed in his vocabulary. I think in that month that we started using the signs with him regularly, he learned 50 words, and some of those were auditory, and some of them were just signs which then became auditory.

And it was so interesting to me, because I was like, ‘That’s what Kimball needed.’ He needed us to be using auditory oral, but throwing in those signs so he can see it visually. And so he could have both of those inputs, the visualization of the sign while we’re speaking the word and he’s doing fantastic with that. So, we’ve kept that model. And even now, and as time has gone on, and he will know the word really well, he’ll drop the sign. And then when we’re teaching him a new word, sometimes we’ll use the sign, but sometimes he can just say it. And so, that was a great experience of just following his lead and giving him something that he really likes. And then our plan as of right now is just when he has his auditory language down, we will offer him American Sign Language. And if he thinks that’s great and awesome, we will all jump in headfirst and we’ll give him that. But right now our priority is the auditory oral and it was great to just see that like, these things can kind of work together and give him language.”

LS: “You know, I sometimes hear people say that sign language can be a crutch, and you don’t want to rely on it. And I never understand that argument because if someone has a broken leg and they need a crutch, they should use the crutch. Like this is not a bad thing to need additional support for something, even if you’re going with this one method, like why not do (something else). I think it’s signed support is what that’s called.”

MC: “Oh, that’s what it’s called, okay.”

LS: “Because it’s not like the sentence structure, right and all the things that come with the language, which you’re totally aware of, you know. It’s not either or. And the politics, the controversy, the drama, I think it stems from people’s own insecurity about what’s right, because, listen, nobody knows! Nobody knows if their child who is born hearing might also have language delays, or any other thing that comes in and comes with a specific language impairment, and maybe they need sign language, which has nothing to do with their hearing.

So, there are a lot of conversations happening that are not only hearing loss versus no hearing loss. Hearing loss is very varied. You got mild, moderate, or severe.”

MC: “Yes.”

LS: “All these different states. You got right your left here, maybe it’s not both yours and then you have the family context. Are their signers in the family? Or is this a hearing family with no concept of sign language who now need to learn a new language on top of everything else. Maybe that doesn’t work. Resources; Do you have time and money, and availability and accessibility to all of those things? Which is true, that exact sentence is true, both for getting sign language instruction and for getting LSL, listening and spoken language. What’s in your community? Are you in an urban environment where you have these choices? Is there a parent whose time and resources allows them to invest all this time and effort, whereas other people might not have that privilege? Like, there’s so many things going on. Not to even mention the health of the child. It could be other things and how many other children are in the family? I could go on and yeah, basically, it’s an individual decision.

That’s a major, major message from this entire podcast. Listen back to all our other episodes. You know, I had an episode with Kimberly Sanzo who is a major sign language promoter and supporter to not have language deprivation. That is an amazing incredible mission that I fully support. And me and Kim are cool friends. I love her! And I also interviewed someone from AV, auditory verbal. She brought auditory verbal to Israel. It’s a super cool story about her and her children. Elaine is the executive director of AV Israel here in Israel where they’re providing services for hundreds of families for the listening and spoken language in the Jerusalem area. Huge, huge! That is an incredible mission too, both of these two ladies can simultaneously exist and support the families that need the support for those things.”

MC: Totally! Give them language. That’s what we want. Give them communication, whatever that looks like for you.”

LS: “Language or speech. Exactly! And the most important thing is to connect with your child to also process your own story, which is hugely what this podcast and my entire mission is about. Yes. And why I have so many tools and resources that I keep talking about, you know. It’s not because I think you should buy my journal. It’s because I think you should journal. Hahaha. So, I’m giving you journal prompts.”

MC: “I think that’s one thing that we had to process too, is that if he only had a hearing loss that would be life altering. That right there, hearing loss is such a big deal. You have to do so much intervention. It’s not just give them hearing aids and they’ll be fine, they have normal hearing now. There’s so much work that goes into helping them thrive with their hearing loss. I think, that was a good thing to recognize. We need to prioritize here like what we’re going to work on, and his hearing and speech development is definitely a forefront on our minds, because that’s so important for a child and a person to be able to communicate what they want to communicate.”

LS: “Yes, exactly. There’s a sign that I will never forget. I love my speech therapy colleagues so much. They teach me so much. And when I was working in the School for the Deaf, she had a big sign and it said, ‘A child does not only need to name things like dog, cat, hat, water, or bathroom. What do we use speech for? We use speech for making jokes. We use speech we’re connecting, we use speech for singing and for celebrating. We also get angry and want to get angry at someone else.’ Like these are all communicative intents that we have with speech. And so, speech is one way to do that. But if a child is using AEC, a device, an iPad with pictures or any other communication method, the goal, the striving, of course, in tandem with their ability, is that they should have all of the communicative intents available to them, not just naming things.”

MC: “Yeah, yeah, that’s such a huge part of just being human. What a joy it is to be able to communicate with other people.”

LS: “So, going back a little bit to hearing aids and that whole process, how was that for you?”

MC: “So, Kimball was discharged from the NICU when he was 22 days old. And then when he was three months old, we went in for his surgery to have a G tube, which is like a feeding tube into his stomach placed. And on our way out, we picked up his hearing aids which I really regret because we had such an overload from that surgery and learning how to care for the surgery site and how to use it and all that and then we went down to the audiologist in the same hospital. We were like, we’ll save the drive and we went down and picked up his hearing aids. And we were told about how to check the batteries and how to keep them dry and trying to put them in his ear. It was a really overwhelming thing. I’ve learned a lot since then. I don’t schedule appointments like that one after another.”

LS: “That’s an amazing tip right there!”

MC: “Give yourself a breather. It’s okay to drive a little extra to be able to have more buffer to process things. But at first, because he had so many other devices, his feeding tube, like I mentioned, which is a huge, oh my gosh, what a pain that right there was really hard to learn how to use that and we had a lot of complications with that. And then he had this huge plastic collar we had to put on him every time we held him to protect his spine and we just had so many therapies going on. We didn’t put his hearing aids, I mean, I think he had his hearing aids on for maybe a cumulative time of 10 minutes per day for the first month or so. And I felt a lot of guilt about that. But I also felt like I was totally drowning. And so, that was what I could handle right then. And then our hearing specialist was coming. She kept on saying, ‘Okay, are you guys putting those in more?’ And he wasn’t awake very often. He slept a lot because of his medical stuff. So, at the beginning, that was what we were meeting about. That was our main goal, to get Kimball’s hearing aids in more often so he could be exposed to language. As time went on, I don’t remember what it was. It was like this click after I think a couple months of him having them, like, this is really important for him to be able to hear. There’s this hearing loss simulation on YouTube. It’s like the Flintstones.”

LS: “With the Flintstones. Yeah.”

MC: “Oh my gosh, I heard that and I was like, I am never going to leave Kimball without his hearing aids while he’s awake. I knew he couldn’t hear without them. But to hear that like muffled distant sound, I was like, ‘That’s terrible. I want him to hear me.’ So, it really was just a process of like feeling really converted to the idea that he really needed those and that that was a number one priority. So, now, fast forward a couple years and as soon as he wakes up, we pop those babies back in and we only take them out right before he goes to bed because I want him to catch everything and I want him to have access to every sound that he wants and he loves his hearing aids. He loves them like a toy. So, he does pull them out and chew on them like all the time. So, it’s like the worst. He’ll pop off the ear mold and pop it in his mouth and it’s terrible. I’m like, ahhh!”

LS: “Oh no!”

MC: “But he loves when they’re in so we’ll put them in and we’ll click them to turn them on and his eyes light up and he’s like, ‘Hi! Hi! Hi! I can hear you, you can hear me and it’s really cute. He really responds really well to it and he loves being able to hear.”

LS: “Have you tried using any headbands or clips or anything like that?”

MC: “We have the little, I don’t even know what that’s called, but we got it from his audiologist where it has a little slip knot that goes around the hearing aid and then it clips to his little shirt to keep them tethered together. And we use the little hearing cap, that works really well. So, on days when he’s pulling them out a lot like if he’s teething or something or just agitated, we will put the hat on him and that usually keeps his little fingers out of his ears. We really love his hearing aids and the technology. It just opens up a whole world for us and for him, and he’s so happy when he has those and he can hear. It’s really the best.”

LS: “That’s wonderful. How old is he now?”

MC: “He’ll be two in May. So, it’s been a journey.”

LS: “It’s all really fresh!”

MC: “Yeah, we’re still in the trenches here.”

LS: “Yeah. And how has it been for his older sister?”

MC: “With him just overall having a lot of extra attention because of all of his different medical complexities, he has a lot of therapists coming in and out. We go to a lot of doctor appointments. It’s rough. Therapists try to include her in some way, but I mean, the whole conversation is, “How’s Kimball doing? What’s Kimball doing? He’s so cute. How can we help Kimball?” Kimball, Kimball, Kimball.

We’re very similar, Wendy and I. She likes to be the center of attention and I recognize that in her because she is similar to me, and I’m thinking, this must be rough to just kind of be shoved to the side. I think the biggest struggle really has been during appointments, whether they are medical appointments or therapy appointments, as soon as the doctor or therapist comes in, she starts having a really hard time not hitting and acting out and trying to get attention. So, that’s been a really rough adjustment.

But it’s also been a process where she has become so much more loving towards him, where before she just kind of hated him. There were really no positive inner changes with them, but now she’s a lot more interested in him and loves him. She also, as a side note, when we were learning ASL, she loved little signing time videos and she picked up on it so well, where it makes me happy to picture her in the future, when Kimball has his spoken language down and stuff, we could show him a few of the sign times because it’s a fun way to expose them to sign language. It’s fun to picture that maybe he’ll love it too like she did. She really picked up on it. There was a point where she knew more signs than I did. That was really fun to see her involvement in his hearing loss world.”

LS: “Kids really have an ability to acquire languages. That’s zero to three right there. Zero to three is a critical period for language acquisition. Then, you have until about eight or nine for it to be mother tongue level. Some studies kind of move that until puberty, like eleven or twelve. If someone learns a language before that age, it can be as a native language proficiency. And then anything after that, it’s not as good as their first. So, yeah, kids are amazing. Maybe Wendy needs a podcast. You just give that girl a podcast.”

MC: “Yeah, I could totally picture her saying, “My mom did it so I’ll do it too.” That would make me so happy.”

LS: “Just thinking about my daughter who is five and a half, she loves talking to the mic and hear her playback. Maybe try that, she might be like, what’s up with this whole mic situation mom?”

MC: “That would be really fun. We could even record her little thoughts about it. It would be so fun.

One thing I really want to add in and talk about, hearing aids and his level of his hearing loss, that was one thing we did take into consideration when we were deciding. Actually, even just recently we had a deaf mentor again, because we thought that would help us get into that mode again of signing so that we can give him those isolated signs. And then we are also in the talks of ending those services again. One of the things we talked about with his hearing specialist, I mentioned before of looking in the long run, what do we want for Kimball? One thing I’ve recognized, is that I don’t relate nearly as much with other parents who have a deaf child as I do with other parents who have a hard of hearing child with some kind of hearing device. It just feels like a whole different thing. Obviously there are things that will overlap and you can relate with but I think having any level of hearing versus not having any hearing at all, I find that to be a really big deal. With having Kimball’s, well really our deaf mentor, because as parents we were meeting with him. It was really cool for him to tell us his story and how he was able to teach his friends sign language so they can communicate with him and a lot of different things. I thought it was so cool and he was so easygoing and just really positive about all of this and I would love for Kimball to be that way. But I feel like his story will be different as far as what it seems like right now. He will have the capability of hearing other people and talking to them so it really will be a unique situation from being completely deaf. We kind of went through this process thinking, do we want to really teach Kimball full ASL right now, now that he’s picking up on auditory and stuff. I was like, I don’t know, I wonder if he will feel like I do, if he will relate with other kids who are hard of hearing and have some kind of hearing device, more than kids who are completely deaf. So, if he went to social gatherings, who would he gravitate towards? Probably the kids with hearing devices because then they could make jokes of, ‘my mom said this and I popped out my hearing aid, hahaha’. The jokes would be totally different than if you’re completely deaf. That would have its own little set of jokes or culture inside beings associated with that. So, that was actually a part of the decision right now to focus on auditory oral, because that’s where I kind of visualize or picture our son being, and gravitating more towards other kids that are in more of a similar situation with him, rather than the blanket of any kind of hearing loss.”

LS: “I think that’s a very good point and that there’s a spectrum even with the identity with deaf, hard of hearing, hearing impaired, whereas some people are really against using the word impaired for having hearing loss. Is it deaf gain? There’s all these different places where it really comes down to the individual when they are gonna go through their identity formation as teenagers in every area of their identity life. This is also going to be part of it and we can’t predict that. We can try to guide them but influences like, listen I put this out there all the time as a disclaimer. My oldest child is almost six so I know nothing about having teenagers but from having been a teenager and knowing teenagers, there’s only so much parents can influence when it comes to identity. Hahahaha.”

MC: “Yeah, totally!”

LS: “So, you’re going to make the decisions that you believe in that are right to you. You do your research and then you make decisions. If you need help with that, like risk and benefit analysis, talk to people. Open up and learn other people’s stories and not just hear one thing from one professional or one loud person on Facebook. Go and do your own research and meet other people. Read lots of books and lots of stories and see what’s going to work for your family. The level of hearing loss is a big factor, that’s exactly what you’re saying. For sure.

Also, educational placement is this big next decision after the first couple of years. Then you go into kindergarden. What are we doing now? Are we going to deaf school, are we going to mainstream, or something in between? Again, there are so many factors that will come into that decision. Every program you go to, that’s the story. The story is you need to go to lots of programs. You need to see how you feel when you are in this building or among these children or how does this place feel. It’s more about if you are a good fit than what’s right. There is no one right, that’s why there are all these different options.”

MC: “Yeah, there’s just making an informed guess, really that’s what we are doing right now. They can’t tell us yet. It goes either way. We are just projecting that it seems like he’ll do this and this, and with his personality, he might like this and this. We’ll kind of go in this direction and we’ll follow his lead. That’s what we’re going to learn. We’re just following his lead.”

LS: “Exactly. And then be open to having to make a change. Maybe towards the end of the year, well not this year, but other years when life is normal hahaha, you kind of ask, are we going to keep him here next year or is it time for a change. If somebody is very dogmatic about wanting it one way, then I think that’s where they might come up with issues.”

MC: “Yes, totally.”

LS: “So, be open minded and do your own research and get support.”

MC: “Yeah, I love that. Totally.

Oh, I really wanted to talk really quick about what we love about his hearing loss.”

LS: “Oh, I love that.”

MC: “Because it is so stinkin’ convenient to be as loud, well within reason, we could be pretty damn loud when he’s sleeping and it doesn’t matter. People will come over, like if they are having a child come over to have a playdate with my daughter, they’ll be like, be quiet, Kimball’s sleeping. And I’m like, it’s fine, he’s deaf. Don’t worry about it. And they get all like, ahhh, because it’s so bold to say that, so blunt. But it is so nice and I can just sneak into his room whenever I want, as long as the light isn’t involved, because he can see that. But we’re good, he can’t hear me and it’s really convenient. Or if we want him to fall asleep on a road trip, we just pop them out (hearing aids) so we can be as loud as we want and it’s a lot easier for him to fall asleep. So, really, I picture having future children, and I’m like, we’ll have to be quiet when they are sleeping during naps. I’ve become very used to being able to be loud while he’s sleeping and I really like that. Hehehe.”

LS: “Number one, that is hysterical. Number two, I think you bring up a very important point for families where humor is an excellent tool. Sometimes there is like these gallows humor and people are not into it, they’ll say, ‘that’s insensitive, you can’t say things like that.’ But I think if anything it’s really super important to be okay with also noticing the great parts and not feel bad about them because things can be hard and funny at the same time. Things can be challenging or unfortunate or scary or unknown and also be hysterical.”

MC: “Totally!”

LS: “That doesn’t negate that it’s difficult. It doesn’t negate that it’s a big deal. But you can find joy in those moments.”

MC: “I think because the experiences are so dynamic, there are so many different moving parts, it’s not just that this is so sad and terrible or that it’s so happy and wonderful. It’s so complex. There are so many different emotions involved. How much better to feel that gratitude within that mix because it lightens it up a bit, otherwise it’s a super heavy, hard thing to handle. So, humor has helped me a lot.”

LS: “Yeah. It’s funny, because I’m often am doing this, if something is hard, we say it’s also okay for it to be liked. And when things are going great and some things are challenging and you’re feeling guilty about having a hard time, it can be great and difficult.”

MC: “Yes. I actually worked on that with my therapist because I had this other thing, it didn’t have a lot to do with Kimball, but I was like, ‘I feel so scared but also excited, but I need to get to the point where I’m just excited.’ And she was like, ‘No you don’t. You can totally stay there. You can be scared and excited.’ And I was like, ‘Thank you for giving me permission to have both those feelings.’ It translates all throughout my life. It was probably like six months ago, but now I feel so much permission to feel what I feel and be okay with it. And that’s been great. That’s a piece of advice too. It’s so life changing and it changes every day of your life and that is so worth it. You do therapies for your child and appointments for your child, but you matter too.”

LS: “Yes! If that is not a great way to end, I don’t know what is. Thank you Madeline. Thank you so much for joining us. This is the All About Audiology podcast and you can find the links to the Rare Life podcast over at allaboutaudiology.com, where we will also have a full transcript and links to follow Madeline. Yes? On Instagram and Facebook?”

MC: “Yes, yes, all of it.”

LS: “Okay, so I’ll put that all in the show notes. Thank you so much for listening. As always, I’m looking forward to your responses or questions you might have and it might end up on our All About YOU! episode, where every other episode is about your questions and your comments.

Thank you for joining us.”

MC: “Thank you so much!”

I’m Dr. Lilach Saperstein and this is the All About Audiology podcast.

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