Our 10th Child’s Voice Podcast was released on April 3, 2019. To listen to the Podcast, please Click Here.
(Episode transcript below.)
In episode 11 of All Ears at Child’s Voice, Jessica and Tatum interviewed a Child’s Voice mother, Dawn. Dawn’s son wears bilateral cochlear implants. Dawn joined us on the show to discuss her experience first learning about her son’s hearing loss diagnosis and her and her husband’s decision to use both Listening and Spoken Language and sign language with their son.
Tune in to today’s episode to hear Dawn share about…
- Her experience with Deaf culture and sign language prior to having her son
- The emotions she experienced while deciding whether to get her son cochlear implants
- Her and her son’s relationship with the Deaf community and their experience learning sign language
- Her son’s progress with his bilateral cochlear implants
- The unique advice she offers parents who are considering cochlear implants for their children
- And more!
Where to Find Us
This episode was edited by John McCortney.
Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice.
Tatum: Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. We’re your hosts, I’m Tatum Fritz.
Jessica: And I’m Jessica Brock. Last week we spoke with Theresa Harp about counseling families on communication mode. Before we get into this week’s episode, Tatum and I wanted to check in with our listeners about something.
Tatum: Jessica and I wanted to remind everybody about our own expertise, which I think we mentioned– way back depending on how long you’ve been listening. We’ve mentioned this in our very first episode. We are a listening and spoken language program. So Child’s Voice works with families and children on developing, listening and spoken language skills. And then that’s Jessica’s and my background. As a podcast discussing all things hearing loss, other communication modalities might come up, especially in our last two episodes, sign language was mentioned and as we were just discussing, cued speech was mentioned. In today’s episode, we’ll also be talking about sign language and Deaf culture and just to be open and honest with everyone– this is, these are not like the areas that Jessica and I have expertise or very much experience in.
Jessica: Yeah. But that being said, like our intentions are really good. We respect all of our families, communication choices and really openness is key to us. So if any listeners feel that we’ve misspoken or, um, could better clarify something, we are very open to learning and we’ll share any information that we learned with all of you. So feel free to reach out to us. All of our contact information is at the end of the podcast. In addition to us, like we are human, but so our guests and they have been very gracious to offer, um, their time and their stories with all of you. So please be open minded and–
Tatum: yeah, as always, feel free to give feedback. Um, we’re learning just as you guys are learning and just as our guests are still learning. So, yeah.
Jessica: All right. So now we will move on to today’s discussion. Today we will be talking with a mom of a child with hearing loss. Her name is Dawn and she has so graciously offered to share her journey with us. Welcome Dawn.
Dawn: Thank you.
Tatum: Yes. Welcome. Dawn has a fascinating story and we’re going to get more into that in a moment, but why don’t we start by just having you tell us briefly about your son.
Dawn: Okay. I will have a three year old in less than a month. My son and I have an unbreakable bond. He is loving and caring. He definitely wants to be heard. He enjoys looking at books and playing with cards.
Jessica: Sklar is very cute and adorable.
Tatum: And he does like to be heard.
Tatum: We’ll be talking with Dawn about her story, her son and, and their use of cochlear implants and sign language.
Jessica: So first do you mind sharing with the listeners your experience with sign language prior to having Sklar?
Dawn: Okay, sure. When I was in elementary school, one of the girls who was in my Girl Scout was deaf and blind. Her family would come and teach the Girl Scout troop ASL and Braille. Another experience was in middle school. My school partnered up with a neighborhood school that allows students at my school to work with kids who have special needs during their gym period. I was able to work with students who were deaf, hard of hearing or language impaired. I was exposed to sign language during this experience. This experience led to me wanting to learn more. I took American Sign Language for four years in high school. I loved the experience so much that I decided I want to be a deaf education teacher.
Jessica: When were you exposed to that? In middle school, you said?
Dawn: Yeah, in elementary school, like in fifth grade.
Jessica: That’s such a cool program. Did you opt into it or was it like an elective or how did that work?
Dawn: So the first time I learned there was a girl who was deaf and blind in my Girl Scout troop. And so the mom just kind of wanted to come in and teach us to sign and braille. So all those girls learned; it was pretty cool.
Jessica: That’s so cool.
Tatum: Yeah, It’s really cool. I didn’t realize you took it for four whole years in high school.
Dawn: Yeah, in middle school after the experience in my gym… So all of the students had an option to go over and volunteer. Um, and I decided that I wanted to do it the entire gym period. They had me, you know, do some extra things, but I was fine with it. Um, and so I got to work with the deaf/hard of hearing students for an entire year. A good experience. And then I wanted to continue in high school, so I would go back and volunteer there like through the high school and they worked with them as well. Um, and so yeah, it was a great experience.
Jessica: So tell us a little bit about your understanding of the Deaf community. Like did you know only people who were Deaf who signed or did you also know people who had hearing aids? What was that like?
Dawn: So most of the students at the school, I don’t believe had any device. They had other disabilities. So I don’t believe anyone there had hearing aids or implants. Um, and then I knew some people in the community who were Deaf. They did not use devices, they just used sign. And mostly it was like home signs. So they didn’t like, they weren’t like using ASL. It was more just sign language. And then in high school, I don’t think there were, there were no Deaf students or there were like, no, students who were deaf or hard of hearing. And my teacher, her husband was actually deaf. So I saw him for the first time with hearing aids. That was the first time I saw a person with a device. I didn’t know anyone prior to who use hearing aids or implants.
Jessica: Okay. So elementary school Girl Scout, middle school helping in gym class?
Dawn: Neighborhood school that had kids that were, had special needs and so we could volunteer during gym period to help them during their gym period.
Jessica: And then in high school you took ASL.
Dawn: Yeah, coursework.
Tatum: And then your ASL teacher has a husband who is deaf.
Dawn: Who had hearing aids.
Jessica: So was it just that initial experience with the girl in your girl scout troop that led you into that kind of path? Cause you didn’t know anyone in your family or anything like that who had hearing loss, correct?
Dawn: One of my cousins, but I don’t know much about that story. Actually, after the experience in Girl Scouts. I really wasn’t really into it. Um, when I went to middle school and I was able to volunteer at the neighborhood school was when I really fell in love with it.
Jessica: So then fast forward you had Sklar and um, tell us a little bit about the journey to his diagnosis.
Dawn: Well prior to having him, I was a preschool teacher and I was teaching my students like basic sign before having Sklar. And then Sklar was born. He was doing well. And he was in a program with the school district and they were asking me about like his physical and his hearing screening and not his physical but the hearing screening I just couldn’t find. And so I was like you can go ahead and do another one. Took two seconds. So she tested him, he failed the initial screening. She asked me a month later if she could do it again. I was like, sure. And then he failed again. So she tried it on me and I passed. So she was like you might want to take him in and get checked. We took him in and the initial test they were like we should go get his ears cleaned out, there’s maybe some wax, and try again. They didn’t tell us the results initially. Just tell us to get his ears cleaned out and we’ll see what the results are. Then we took him back to booth testing again and that’s when they told us that he was, I think like mild to moderate at that first test.
Jessica: And how old was he at this point in time? Roughly?
Dawn: I think about 13 months.
Jessica: Okay. So then did you go back for more testing?
Dawn: Yeah, we went back. We were going back probably every week.
Jessica: Oh my gosh.
Dawn: Yeah. And then probably the third week they were saying he was like mild to moderate, we transferred and they were saying he’s severe to profound within that same week, which is pretty scary.
Dawn: He was progressive, he had progressive hearing loss. So that played a role.
Jessica: That’s a lot of information to receive in a week.
Tatum: And all of this is happening when he’s around 13 months or was it spread out?
Dawn: It was like 13, 14 months. It had maybe been like a month at that point.
Jessica: So, okay. So his hearing loss was progressive. Did you have any feeling that something might be going on with this hearing prior to that testing? He was talking a little bit, right?
Dawn: Yes and no, his dad had some concerns because he would come in and close the door and Sklar wouldn’t look. I didn’t really feel like he had hearing loss. I was, I was, he would talk really loud and that was the only concern that something was going on. But, um, I didn’t think he had a hearing loss. It wasn’t, I didn’t think that.
Tatum: So then at 13 months, it’s just around the time kids start saying words. So it would probably be just around the time that you might start noticing a concern.
Dawn: Well he had about 25 words at that point when we found out. And he was kind of like starting to lose it a little bit, but I didn’t think it was hearing loss still. It wasn’t something I thought could be going on. And so,
Jessica: Had you started teaching him some signs prior to all of this, given your background in sign language?
Dawn: Yeah. So the day Sklar was born I decided to teach him sign. I would sign songs to him or like teach him little basic sign. So yes, he did.
Jessica: Um, was it your goal when he, what was your goal for him for his communication when he was born.
Dawn: So I wanted him to, um, learn Spanish, learn sign, and French. We were exposing him to a few different languages as a baby. So we wanted him to…
Dawn: …communicate with different people.
Tatum: I didn’t know that about the other languages. Do you know people who use Spanish and French?
Dawn: Yeah, so I took French. I took French in middle school actually. Yeah. And then, um, there was someone that was with us who was speaking Spanish to him daily, so he was exposed to both and I would teach him sign so he was exposed to a lot of different languages.
Tatum: So he’s been diagnosed, it’s a progressive loss. Were they talking to you yet about devices? Like how early did your audiologist start bringing up hearing aids or implants?
Dawn: So, um, initially they were not really telling us a lot at all, which was really frustrating. Um, we started and kept asking them questions. They were kind of, I don’t know, I think they were nervous about just how fast things were happening. And so I think they recommended doing the ABR first. Um, and then I think giving us an option. And I believe a month after the ABR he had his hearing aids. I’m not sure why they weren’t sharing information with us, but they were just, um, I don’t know, kind of, maybe they, they were probably nervous about telling us because he lost his hearing so quickly. And so after the ABR he received hearing aids like a month later. And then his dad and I asked about cochlear implants. That was an option for him and we wanted to learn more. So we started to kind of pressure them and ask them questions. He was a candidate and just how that whole process worked. So we did ask that after he had his ABR.
Tatum: And with your background, coming from someone who knew first about hearing loss through the culturally Deaf community, had you heard about cochlear implants? Did you have thoughts about them before Sklar’s diagnosis?
Dawn: Yeah, so I definitely knew a lot about cochlear, we learned about it in high school. Um, so it was that the term was familiar. I just had never seen anyone with them, you know, Sklar’s going to be the first one with implants, I don’t know how to feel about this. So yeah. I was really nervous when they finally did say he would need them. I wanted Sklar to be the person to decide if he wanted to get them or not. I felt like horrible making the decision for him. And so…
Jessica: That can be really hard. I feel like a lot of parents have said the similar thing, like there is a pressure to make that decision early, but when you make it early like you’re the only, like you can’t have his input, which is really, I imagine it can be really frustrating.
Dawn: I wanted to wait till he was at least five so he can tell me yes or no. But they said the longer we waited he would have more just like delays with his speech. So, I finally said yes.
Jessica: What research did you do besides talking to the audiologist about cochlear implants?
Dawn: Um, I would sit on the computer and just type in cochlear implants and just, I don’t know, looking at the device and um, how they look on people and just, I don’t know anything I could find. I started to meet parents, meet families with them. That really helped me seeing other people with them on, and then just learning about their story and the process they went through to get them. They went through similar situations that I did. So it was nice to learn I wasn’t alone, I didn’t feel that way alone.
New Speaker: How did you get connected with those parents? I feel like you’ve done a lot of reaching out to other families and people in the Deaf community. How have you made those connections?
Dawn: So I, um, asked his therapist, like all the time I was like please connect me with families. We’d find events in the community to go to and I’ll just, you know, ask parents and families if they wanted to talk about their stories and yeah, just networking was the way we found out and learning more about the device.
Jessica: Because prior you had never even seen it on a person, correct.
Dawn: On a person, correct.
Jessica: So it was probably helpful, I imagine to see other kids who are a little older than Sklar with them?
Dawn: Yeah, just to hear them talk, I think helped me feel better about them. Yeah.
Jessica: Okay, so you agreed to do the cochlear implants. What’s your perspective on his communication options at that point? Because cochlear implants sort of signify like a listening and spoken language approach, but you also have the sign language background. So talk through us, just your thoughts about his communication options at that point.
Dawn: Yeah, so, um, after he received his implants, he was still using ASL, um, and I was open to like, if he didn’t want to use it anymore, I will allow him to, to stop. And at this point he doesn’t really use it much anymore. But, um, I still sign to him because when he got implants off he can’t hear anything. And so in those, those times he does sign to me, he will, if he feels like I’m not understanding him, he will use some sign. But when his implants are on, he’s chatting away. So he’s definitely breaking away from it. But I still will sign to him sometimes. Um, when we’re at home.
Jessica: Yeah. It’s been sort of a journey with him. Like he has had moments of time where he’s using a lot of sign and not talking as much and then talking more and using less sign. How do you navigate that?
Dawn: Yeah. I just really follow his lead. If he feels that he needs the sign to be clear about what’s being said then I’ll use it. Um, if he’s telling me like, mom, just talk to me then I, you know, respect that. So I really try and follow Sklar’s lead.
Tatum: So we know that you’ve been involved with Child’s Voice and we’ve been helping you with the Listening and Spoken Language side of things. Who in your life, Sklar’s life has been helping you with the sign language side of things?
Dawn: So he has a Deaf mentor, two Deaf mentors. And they have been very helpful. They’re very open so they are open to him using the oral approach or using sign. I’ve also taken some sign language classes after high school. I’ve taken two courses. Um, and they’re also open. They know that he has implants and I was just talking to them about their opinion, you know, and learning more about how they feel about it and they’ve been very helpful. Just, you know, telling me to do what I feel is best and do what Sklar, you know, what he needs, if he wants you to sign, if he doesn’t. And so, just following Sklar’s lead.
Jessica: Do we want to talk about that a little bit more?
Tatum: Yeah, like the controversy?
Jessica: What I know based on like courses that I took years ago, so things may have changed between now and then. Um, there is what we sometimes refer to as like the culturally Deaf or capital D Deaf community, which are people who are Deaf and don’t use amplification and use sign language, and then the opposite end is people who have a degree of hearing loss and then use amplification and are learning Listening and Spoken Language and then there are all different variants in between. But sometimes those two different worlds can clash and that there can sometimes be controversy between those two. Do you want to talk a little bit about any experience that you have with that?
Dawn: Sure. I’ve had a lot of experience with that honestly. And then when I have Sklar present it just doesn’t make things better there. Yeah. People are very opinionated. And they will sometimes tell me like, why did you get those for your kid? Like people that are in that like Deaf world who don’t use any amplification. They’re really against hearing aids and implants. And when they see my son, they are like, why’d you do this to him? Like, what are you doing? Sometimes I respond and sometimes I’m just kind of like, I’ll just, you know, walk away and, remove Sklar and there’s others who are like, you know, this is awesome that you think this, got your son implants and you know, he’s able to, he still uses sign, which is awesome. And so yeah, people would just, I’ve gotten both sides, people that are supportive of it and people are like, what are you doing? There’s a guy that I know who is Deaf, doesn’t use any device. And I was like, excited for my son to meet him. I was like, look, my son’s deaf too. Like, you know, I was really excited for him to meet him and he did not respond really well at all. And I was just like– It was, yeah, it was difficult to, um, just his response kind of made me feel bad, but, um, it was okay. I was like, you know, now I understand that when he grew up there, the device wasn’t available when he grew up. So he has his opinion. I think he has a reason why he believes the things that he does. And so I respect his opinion as well, but I just was excited to share that my son had implants and he still used sign. He was not happy about my choice, so, yeah.
Jessica: Yeah, yeah, that’s gotta be tough.
Dawn: Before he had implants I would see people respond that way to other people. And so I knew it was coming. But,
Tatum: Have you been able to talk to other families about their experience with that?
Dawn: I have not actually, no.
Jessica: I think of the families that I work with, I think you’re more involved in the Deaf community than a lot of, so I can see you being in a position where that would happen a little bit.
Tatum: That must be very tough to face as a parent though.
Dawn: Yeah, like I said before, my son has implants, I’ve heard people’s opinion about it. I kind of knew people like, you know, are against getting devices and so I’m always aware that someone might, you know, not like that he has implants. And so I respect their opinion. Um, I just don’t like if they’re, you know, trying to attack me, you can say that’s why I’ve got it, you know, but just don’t try to make me feel terrible about doing it. Um, we had, we were at an ASL chat and there was a guy there who was like talking really bad about cochlear implants and I didn’t share with him that my son had them. So I just let him talk and express how he felt and I was like, I definitely should not share anything with
Jessica: Oh no
Dawn: And so he removes me. And I was like, you know, if that’s how he feels, you know, it’s fine. He didn’t say anything about my son in person. He was just sharing how we felt about them and he felt that it was changing, you know, who the person, the person was born without the or, you know, may have lost their hearing and they should stay that way and um, I felt he had a valid point or a reason for why he felt that way. But um, yeah, so I just listened to him. I allowed him to express how he felt and I didn’t share with him then my son had implants at that moment. He found out later so…
Tatum: Yeah, that’s understandable.
Tatum: I know you’ve mentioned sometimes when you are approached, sometimes you say something and sometimes you walk away. In the moments that you say something, do you have like a prepared response or something, a go to response?
Dawn: It really depends on the person. If they’re like really upset and really angry about it. And a person that’s kind of like more open, I’ll express how I feel but some people can be really angry that he has implants and so I just, um, I’ll just smile and walk away. Yeah.
Jessica: Conversely, I think there are some people in the Listening and Spoken Language world who have a hard time understanding why a family like would do sign, like there are extremes on both sides. Have you experienced any of that? questioning about the use of sign language with him?
Dawn: Most times people are pretty like, they were like, wow, I can’t believe you’re still using sign, he has implants. I don’t feel like I’ve been questioned a lot. People are kind of just tell me like not to use it because of implants, but they’re not like, why are you still using it? Why are you doing it? So most times people are like, you know, really happy that I’m still using it and he has the implants. That what we get more, people that are applauding us for still teaching it to him. So, um, yeah. Yeah.
Jessica: Like you said in the beginning, Sklar is a, likes being heard and he definitely, I’ve seen him at different points in time use different ways to communicate what he needs. He’s just so cute. Last, when I saw him most recently, he was doing his please, please, like, for our listeners he was putting his hands together like he was praying and like looking up with this adorable, please please. It was so cute. He’s becoming his own person, which is really cool. And it’s, I love that you guys give him so many different tools for him to express those things beyond just sign and spoken language. You also give him like pictures to point to. And I remember, um, before I even met you, you texted me and asked for a picture of me so that you can add it to his visual schedule in the day. Like you guys are just so open to giving him what he needs to understand his world and to communicate with you so I think that’s really cool. If I can brag on you for a second. I think that’s really cool.
Tatum: It sounds like the main reason that you were hesitant to decide on cochlear implants was that you wanted it to be Sklar’s choice and as we know, because of the way the brain develops, it’s beneficial to do it earlier. So that’s one reason why you did it earlier. But were there any other reasons you were hesitating to go ahead with the cochlear implants?
Dawn: No, I just really felt that I was like, this is Sklar’s body. I felt like he should make the decision. And still to this day I felt bad. I remember after he had his implants, I literally cried to put them on his head every single day. The therapist would come over, I’m like we had a rough time getting them on, but they’re on and she’s like, you have to stop like showing him that, you know, it hurts you and stuff. And, I think it took me a month to stop crying. He does like them. He loves his implants. Um, but he was having, initially when they got turned up, they were too loud and so it kind of scared him a little bit. So it was a rough, a rough time putting them on him in the morning. But once they were on, he loved him. He kept them on. It was just that period of putting them on his head.
Jessica: Did it get easier?
Dawn: Um, it did. And now he asks for them. He’ll go and he’s like trying to grab his ears and stuff. So it is a lot easier now, but I still think about it. It’s like I wonder what he’ll say when he’s about to talk to me, like if he’ll thank me or he’ll be upset with me. But we’ll see.
Jessica: I think it’s really admirable that you’re giving him all the tools, like I said it earlier. Um, but I understand that that can feel risky or unsure.
Tatum: And like you’ve said, you’ve been following his lead this whole time and as he gets older you can continue to follow his lead with when he starts thinking about his own identity as someone with hearing loss, someone who uses implants, someone who is deaf. Um, and you can continue to follow his lead. I did not know that about the beginning. Since you come to the center, I see you at the center and not at the home, I feel like you learn less.
Dawn: Yeah, it was very challenging. I, at one point I .was like, he doesn’t have to use these things anymore. He doesn’t like them. He’s crying. It’s really tough. He doesn’t need to wear them. Sometimes just think positive about it and that kind of helped me get through it. But it was very, very challenging.
Jessica: I also think too, it’s really important to communicate. And you do, you do communicate with your audiologist about how he’s taking it. Cause if they were too loud at first, like that can be really overwhelming and scary for a kid. Did you have any conversations with your audiologist about that or did he adjust to it on his own?
Dawn: He adjusted his own. Um, when he first got turned on, I said they were too loud and she turned them back down at that appointment. Um, it’s just, he was just nervous about wearing them. And we also changed devices. He was using the N7 initially and we changed to the Kansos, which he loves now. So that also helped.
Jessica: So he uses the Kanso though, so we’ve already talked a little bit about in previous episodes with other parents about choosing like which device and sort of the overall feedback that we get from our parents is that they tell you to just decide on your own. What was your experience with choosing which brand to go with?
Dawn: I met a few families that use Cochlear and so I think that kind of helped me pick, make the decision. We had the N7s and the Kansons and Sklar decided that he liked the Kansos and so we just kind of let him take, I still try to let them try it, let him use the N7s and he refuses to.
Tatum: I have heard from families that the preference can change over time. So it’s nice that you can get two devices here in the US. When we were in Israel, I learned they don’t do two devices.
Dawn: Yeah, there’s some hospitals that only get one. I’ve met some families that only have one. They were surprised that he had the choice of the Kanso and the N7s.
Tatum: It’s nice to have one of both I feel. Or if you have an option, having like different, having two that you were in different ways because it’s depending on what he wants to do when he’s older, he might prefer having something behind his ear.
Dawn: Yeah. I hope they get smaller. I keep on waiting for them to get smaller.
Jessica: Yeah, they have. I mean they have over time, they keep getting smaller. Yeah.
Tatum: Smaller is coming.
Jessica: Which is crazy. It blows my mind.
Tatum: So it was difficult to accept. Obviously Sklar got more used to wearing them that helped, that helped you accept them. Did anything else help you with that process of like accepting using the cochlear implants?
Dawn: Seeing him ask for them and seeing him happy with them. And like seeing him listen and learning to talk has really made me feel a lot better about them.
Jessica: So Sklar, before his implants was mostly relying on sign to communicate, is that correct? With like a few words as opposed to like spoken language?
Dawn: Yeah first he was using spoken language, he received his hearing aids, he lost the language after he got his hearing aids, he regained some language. Um, and then his hearing loss was progressive so he wasn’t hearing as well when he relied on, um, using sign and lipreading. Then he got cochlear implants, lost all that language again, relearning. He was using signing and lipreading again until he started taking language. Um, and now he just relies on listening. He does what, he will use sign, like I said, without his implants on, but he understands and listens pretty well now.
Jessica: Uh, what was the process sort of overall like when he transitioned? So learning how to listen with cochlear implants is its own whole different thing. It’s not the same as hearing aids. So I remember that time being tough for him both because we were working on the listening, which is hard at that point because he hadn’t yet learned how to listen with his cochlear implants. But then also like just the expectations changed a little bit. What was your perspective of that or do you have any thoughts on that at all?
Dawn: Yeah, you know, I definitely agree It was hard for me even to see him lose the language that he had and having to like listen and relearn to talk and with these implants on. So it was very hard for me to see him go through that for the third time.
Jessica: I remember having kind of a conversation with you about like spending a little bit of time in the day only working on listening and not doing sign and talking about how that was going to be like, probably frustrating for him. I probably didn’t do an amazing job at the time of having that conversation. Do you remember that conversation?
Dawn: Yes, I remember, um, and I spoke with his dad about it and we both tried like having chunks of the day without sign and his dad doesn’t sign, sign as much as I do. So he would just talk to him when he was home and Sklar was doing well, we noticed, um, that he can understand without the sign, but I didn’t really give him opportunity to like…
Jessica: Like show us that he could do that.
Dawn: To do it, yeah. So it was hard. I would always like sign a word or like sign at him. And so when dad would come home, I would just stop and we would just talk to him and he was doing well. He didn’t really get frustrated, um, because he wasn’t understanding. I think it was just, um,
Jessica: It was just different.
Dawn: Yeah it was just different. Like not having those signing. Um, so, but yeah, I think over like a month we kind of broke from it cause he kind of stopped. He wouldn’t look at us a lot when I was signing, he just started to like, use his ears to listen. So we’re like, well, let’s just try just seeing you know how it is without it. We can just try talking to him just so he can work on those skills of listening and understanding. A couple months after he just stopped signing to us, he does at night, but during the day he would just, he doesn’t really sign much. So,
Tatum: Yeah I’ve seen that before with families that use sign in the beginning just because most of the kid’s day is in a world where people are using spoken language and they tend to drop the sign when the spoken language becomes easy enough. And with some families I’ve worked with in the past, it’s been a difficult transition for the parents because they’re so used to communicating with their kid in one way and they’ve become attached to the sign, just because that’s almost — they first bonded with their child through using sign language. Um, so I’ve seen that be a tough transition.
Dawn: Yeah. So my plan is to still sign with Sklar. I want him to learn sign because when his ears are off he can’t hear me. So I definitely think it will be helpful for him in those times. So he’s still exposed to it. His Deaf mentor is still involved. Um, and he’s in a playgroup that uses total communication as well, so he is still exposed to it, which is nice and I’ll continue to use it.
Jessica: What are your long-term goals for Sklar? I know, you’ve just kind of mentioned a little bit, but um, it sounds like you want him to learn both listening and spoken language and sign language. Do you have any additional thoughts?
Dawn: Yeah, um, I guess I want him learn just because of the fact that when his implants are off he won’t hear. If he tells me later that he doesn’t want it to be that way, I’m fine with that, I respect his choice, but I just want to provide the sign in case, you know, or if his device break, I don’t know if something happens, he’ll have it as a backup language. So we’ll expose him to it.
Jessica: He’s doing really well. So that’s pretty cool.
Tatum: okay, so we’ll start wrapping up there, but before we wrap up entirely, do you have any advice for parents who might be debating what mode or communication modes to use with their child?
Dawn: Um, yes, I would say do your research, talk with other families that have success stories and some that had a rough time. I think it was for me, I was kind of upset. We didn’t get to meet any families who weren’t successful, meaning that the kids weren’t able to talk. Um, I kind of learned about that later and it made me upset because like, that could’ve been my son, you know, so it’d be nice to learn about it up front. So I think, yeah, just asking to meet some families whose kid didn’t do so well with the cochlear implants. I don’t really know how you would ask that but…
Tatum: That’s interesting yeah
Jessica: I mean that’s a good way to phrase it. I think, um yeah, that’s not like any feedback that I’ve heard before, but I think that’s really important. Like, you know, every kid progresses differently and like you said, you don’t know what your kid is gonna look like.
Dawn: Yeah. I’ve met a lot of families whose kids were doing really well. And it wasn’t till later that I started to meet some kids who could hear but weren’t able to talk. And so it was kind of scary to find out later after getting my kid implanted that, you know, he could go that route. We were told, I think after the surgery, um, or maybe like right when he was going to have the surgery that there’s a chance he wouldn’t be able to talk and I was like, wait, what? You know it didn’t click to me until that moment. I mean I’d heard about it, l had learned that it was like, but it didn’t really click and set in before his surgery and I was like wait, I don’t about doing that…
Jessica: So yeah, that’s super scary.
Dawn: When I met the kid I like it was, it was nice. I thought it was nice to see the whole family still. I’m like, um, the kids are able to hear, just they weren’t able to vocalize and they used sign to communicate and were, you know, were able to listen. So that was nice, you know?
Tatum: Yeah. I haven’t heard that either. Something that I think would be good to ask as well is the factors that go into that. Kids are so different and there’s a lot of different factors that have been shown through research that lead to certain outcomes. So knowing what those are ahead of time, why some kids do better than others, I think is good to ask.
Dawn: Yeah, I remember asking the audiologist, well, I was kind of upset with him, but after I was like, no one really shared this with us, you know, there’s a chance, like we were only told these success stories and things like that so it was nice I was able to meet families whose kids didn’t do so well with them, and the families were open to talk about it.
Jessica: You mentioned like, I don’t know how you would ask that. it’s the professional’s job to answer your questions and even if it feels kind of strange for like other parents out there who might have questions but don’t know exactly how to ask them, just go for it because we’ve probably heard it before, but also like if we haven’t, that’s, it’s good for us to know that that was helpful for you. I like that advice for parents.
Tatum: And then do you have any advice for professionals who are helping families? Um, either throughout the whole process or specifically about that time when they are deciding on a communication mode?
Dawn: So every child is different. It’s okay to change your teaching style to meet the kid’s needs. Please talk to the parents about what’s best for them and respect the child when they are showing and telling you, you know, that it’s too much. Communicating with other therapists I think is really important. Like working as a team I think that really helped us. So I think that’s something I’ve found helpful. Everyone would like get together and kind of figure out what is working best for the kid. And then, as far as like communication modes, I think allowing the parents to just choose. I think just telling them, giving the parents the option and, then letting them pick what they want and not pushing one over the other. I thought, I got that a lot. I got that a lot. They were telling me like, oh, you shouldn’t do this or do things this way. And, um, I think just provide information for me and letting me decide what I want and what I think is best for my child.
Jessica: I really have learned so much from working with you. I think you’ve gone way above and beyond in creating a team for Sklar and really like being the leader of that team. For our listeners, Dawn has coordinated different co-treats, she’s asked us to, you know, call and check in with the other providers. She makes sure that she’s always at the meetings, she’s involved in all the sessions. Like you just do such a good job of gaining all the information that you can about Sklar and his development and then making sure that everybody is on the same page. And too like you said, both in like making choices about communication mode, but also just in general, like you’re the expert on your son and the professionals are all the experts in their own areas, but you’re the expert on your son. And so Early Intervention is all about that collaboration. I’ve learned so much from you and from Sklar, like he’s just such an incredible little guy. So
Tatum: Yeah, I like too what you said about how we as professionals can individualize our teaching styles. Um, and also the way we work with families. Cause I also feel you’ve just individualized so much your parenting of Sklar, everything is based on his needs and like you said, following his lead and respecting his opinions and how he’s growing.
Dawn: Thank you.
Tatum: So before we wrap up, Jessica, I just wanted to go back to the advice that Dawn offered for families in the episode. kind of talk about the advice she had. We both feel like we didn’t do a really good job of telling her. I think she questioned like how she would broach this topic with professionals and we just wanted it to go back and talk about it a bit.
Jessica: So Dawn had mentioned that after her son had received his implants, she met some families of kiddos who had implants, but had a range of different what we referred to as outcomes, so spoken language skills, auditory skills, sign skills, et cetera. So she basically said when we first learned about cochlear implants, we were introduced to families who had children who have cochlear implants. And were talking a lot. But after meeting a lot of other families, we learned that there are all sorts of different outcomes for kids with cochlear implants.
Tatum: yeah, and this is something that Dawn was saying she wished she had known in the beginning, which I think is totally a valid perspective. When you’re out in the world and you meet a family whose child might have cochlear implants and you see such a range of outcomes, that can be really confusing, especially if you’re not familiar with all the research. So I sort of alluded to the research on the episode, but we didn’t get too far into it. So we just wanted to get a little bit more into it before we close out.
Jessica: So when we’re looking at kids who have cochlear implants and like Tatum said you don’t know their background, it can seem really random. Like maybe this kiddo just got implants like my kid did but he’s not talking. And that’s really scary. But what we know through research is that there are a lot of different factors that contribute to outcomes for kids who have cochlear implants.
Tatum: So some of the ones I can think of off the top of my head is the age that you were diagnosed with hearing loss. So we know getting diagnosed younger, getting intervention younger, getting amplification or hearing aids or cochlear implants at a younger age can lead to what we might call better spoken language outcomes. So you might be more successful at using spoken language.
Jessica: Another one is what we call wear time. So, if your child is wearing their cochlear implant more then we might see better outcomes and there are all sorts of different reasons why kids do and do not wear their cochlear implants all day, but your audiologist is probably telling you the goal is all waking hours. And that’s because we know that the more sounds and words and language that a child is exposed to throughout the day results in usually better outcomes.
Tatum: Other things that might play a role that research shows is the type of intervention you’re in, how early you get entered into an intervention program of some kind, whether that’d be like speech therapy or aural rehab therapy and then also…
Jessica: …auditory access.
Jessica: Yeah. So Theresa mentioned this a little bit in our episode two weeks ago, there are a lot of different factors that go into auditory access too, which we won’t get into necessarily, but if you have questions about that, you can listen to Theresa’s episode on Counseling Families on Communication Mode that was two weeks ago. Or you can listen to some of the earlier episodes from last season.
Tatum: We had two episodes on last season about the cochlear implant process. And on one of those episodes are two audiologists from Child’s Voice talked about the candidacy process and some of that will probably answer some of those questions.
Jessica: Definitely. So as a wrap up to this, Dawn had asked, how would I ask an audiologist or a therapist to see kiddos who have a range of communication modes and skills and levels and what we think is a good way to frame it is, first by starting with your kiddo. So what are the expected outcomes for my kiddo? What do you see his or her language skills looking like long term?
Tatum: And then if you are interested, you could also ask about the range of outcomes for kids and the factors that play into that. And that will probably come up anyways if you’re asking about your child’s outcomes. I think Dawn brought up a really good point that sometimes as professionals, we don’t always emphasize that there are a range of outcomes and we don’t always talk to families about all of the factors that research shows plays into it so I do think it’s important that she brought up this topic.
Tatum: So why don’t we wrap things up there. Dawn, thank you so much for joining us today.
Dawn: Thank you for having me.
Jessica: Listeners, we would love to hear your reactions from today’s episode. You can email us at podcast at child’s voice.org and you can find episode show notes and archived episodes at our Child’s Voice website, which is childsvoicesho.wpengine.com/podcast.
Tatum: Next time we will be talking with Michael Douglas about bilingualism and dual language learning in children who have hearing loss. We are really excited to have him on the show and we think it’s going to be an amazing episode, so please be sure to tune in. We release episodes of All Ears at Child’s Voice every other week on Wednesdays.
Jessica: You may have noticed some of our recent episodes sounding significantly better than our earlier episodes and that’s because we’re very honored and grateful to have the help of a sound engineer. His name is John McCortney. So special thanks to John for editing this episode.
Tatum: And then you can find us on Twitter and Instagram. I’m @TatumFritzSLP and you can find Jessica @JessicaBrockSLP.
Jessica: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook, Twitter, and Instagram with the handle @Childs_voice.
Tatum: We’ll see you next time. Bye.
CV Students: BYE, THANKS FOR LISTENING!