Cued Speech: a Mother's Perspective

ROUGH EDITED COPY

EHDI

SEGELL ROOM

"Cued Speech: A Mother's Perspective"

MARCH 10, 2015

2:15 P.M.

CAPTIONING PROVIDED BY:

ALTERNATIVE COMMUNICATION SERVICES, LLC

P.O. BOX 278

LOMBARD, IL 60148

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This is being provided in a roughdraft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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> LISA WEISS: I'm really happy to let them continue. I just wanted to present today because I get so many questions at these conferences because I've chosen to use cued speech with my family and with my sons so I just wanted to be available to let people ask me questions and tell people about what it really looks like in our lives, so I have a presentation, but it's not quite as fully formed as Sandy's and Rachel's, and I'm really happy that they're here.

So let me cue up my presentation real quick.

So I think I'm going to sit down because it's just a little bit easier for me to work that way. I'm not a professional presenter by any means. So my name is Lisa Weiss. I'm from Colorado. I just am here to give you my perspective of how it's been choosing cued speech as one of the things that we do in our family to support our family and my son, who is now 12 years old, almost 13 years old, and is deaf.

So this is a picture of my twins, who are now almost 13 years old. They're in the seventh grade. My son, Max, is the one on the left, wearing the orange. They're identical twins. They were born in April of 2002, and they were preemies, so they had complications, but hearing was never one of the things that we had considered as being one of the challenges that we were going to be facing.

So I feel like there's something going on because I have a technology person coming at me.

Okay. Thank you.

So these are my twins, and I titled this "Life before cued speech," and I was also life before realizing that being a part of the larger deaf society was going to be part of our lives. So we had almost three years before max was identified as having any issues with his hearing. He did fail they both failed in the NICU. Their newborn hearing screening and we followed up. We really didn't think it was much of an issue. And after the newborn hearing screening, they both actually passed all of their tests, so we had no reason to believe that there was anything going on with their hearing, but they received all kinds of early intervention services, including speech therapy and physical therapy and all kinds of things. So we had professionals who were watching and paying attention and hearing just still was never coming in to the picture for us until December of 2004, when max was about two years and nine or ten months. He failed his first hearing test. He had an auto acoustic emissions test at the suggestion of his speech therapist, who couldn't quite figure out why it seemed like he could hear sometimes and why it seemed like he couldn't hear other times. And we weren't really having that experience. He was very attentive. It was unusual, we thought, that you could vacuum in his bedroom when he was a baby and nothing would happen, but other than that, hearing was not something that I was concerned about. But as soon as we figured out that there was something going on with his hearing, he failed his OAE, and then he had his first auditory brainstem response test shortly after, and they came, you know, back in to me and kind of were preparing me for the shock action and really, I was just happy that I was getting an answer, and they told me that he was profoundly deaf and he would be eligible for cochlear implants if that was something that we were interested in, which is something I had never heard of, and that's when I started thinking about all of the things that this could be affecting in his life, how was his language developing? He had already missed over two years of language development. What was school going to look like for him. How were we going to educate him. I didn't know anything about cochlear implants. So I quickly had to start learning about the technology. And, you know, what were our relationships going to look like? What was his relationship with the world and with our family going to look like.

So the first thing I did was I did a Google search. We figured out that he had something complex called auditory neuropathy. I didn't really understand what that was but I, you know, was on a mission to figure out what was going on, and I got in touch with an audiologist who had been working with auditory neuropathy and studying auditory neuropathy for decades, named Chuck Berlin, and I had a twohour conversation with him, where he told me the best thing that I could do was educate myself on what the options were, and told me to go to the library and pick up a copy of a book called "Choices in Deafness." And "Choices in deafness" was basically explaining the different ways that you could communicate with your child the way that they could be educated. And it was oral education, sign language, or cued speech. And I didn't see that as having to make one particular choice, but the choice that immediately made sense to me, since he was almost three years old already, was cued speech. And these are the differences that I saw between American Sign Language, between using American Sign Language first and using cued speech first. American Sign Language to me was a completely different language. It was something that I didn't know. I was already using English. So cued speech is based on the linguistic principles of spoken language, which is what I was already doing. American Sign Language has a large variety of hand shapes. It's a whole other language. As they already explained to you, cued speech is a finite system. It's kind of like learning how to type, and then just getting better and better at it. ASL is considered a foreign language, and it takes a long time to learn the whole language. Cued speech is easily learned within a matter of days. I learned how to do it in about 12 hours. I had the system in my head, and I understood what the system was, and it took me about four months to become fluent. So this is why I decided to learn to cue first. I was already speaking English. I wanted to be able to get language in to Max as soon as possible since he had already lost quite a few years, and I wasn't really sure what we were going to do amplification wise. It just made sense to me that I would be able to try to get the language that I was already using in to him at the same time, instead of having to learn a new language. I could cue and talk at exactly the same time to both of my kids at that time, and I didn't have to translate it in to something else. I remember walking down the street with them in a stroller. Actually, I think they were walking next to the stroller shortly after I had learned how to cue, and it was springtime, and we lived in New Jersey, and they kept and the flowers were all blooming, and Cole, Max's identical twin brother, said what's that? And he was pointing at all the flowers. And I was cueing the names of the flowers. I remember cueing hydrangea, and it was at that moment that I thought oh, my God, I can actually say exactly, really exactly, the same thing, and they're going to learn in exactly the same way, and that's really sold me and how it has fit in to our life has really been pretty seamless.

Sandy and Rachel already went through a lot of this. So my slides are probably really duplicating what they've already said. But these are this is this is a business card that the system actually fits on a business card and shows the eight different hand shapes and the four positions. And people can really learn the system in a matter of days. I had somebody come out to our house when we lived in New Jersey who was a graduate student at Columbia in New York City, and they came out to our house on a weekend. We paid her something like $150 or something like that to come out and teach us how to cue in a weekend, so the first day, she kind of went through the history of it and explained what it was, taught us what the hand shapes were, and by the second morning when she showed up the next morning, I already understood the system, knew how to cue simple words, and it was just I mean, I just did it for four months, I would cue in the car, when I was driving max to school. I would cue the same song over and over again. I cued the ABCs so many times in those months because they were three, and it was all about the ABCs. So that's how I learned how to cue. And it was really simple.

These are my other Max's brothers, who are learning how to cue. On the left is my he was probably about five in that picture. He's now nine. Keith. And what it's cued speech really goes with spoken language. It doesn't have anything to do with the sound. It has to do with the mouth movements. So everything, what looks the same on the lips must look different on the hands, and that's the concept of cued speech. And they already kind of went through this.

So the way that it's kind of changed our lives is because we were the only cuers in New Jersey at the time that I knew of that were using cued speech. I didn't have a big system of support. I didn't have other people to really cue with or learn with or talk to about what we were doing, so cued speech has a really good system of cued speech camps, which are family learning camps, and it's a way for some of your family members to learn for the first time how to cue, how to get faster and how to get better, and for your family to see other families that are using the system has been really important for us. So these are some of the pictures of the various cue camps that we've gone to over the years. We usually go I think we might have missed one year, but I think ever since Max was probably four, and he's now almost 13, we've been to at least one cue camp every year. And it's just so nice to be able to see people like Rachel and Sandy, and, you know, kids who were raised with cued speech, and how they're all different and how they're all a little bit the same, and most of them, I don't think I think I've only ever met one adult deaf cuer who was raised with cued speech, who didn't sign, which I think is really nice. So I think that it enables these kids to become very flexible in their communication in the world. And that's something that I really value for Max, and I think that he's proving to be that kind of a flexible communicator as well.

When I first realized so for two and a half years, I would say, three years, I was I was only cueing to him, and whoever could cue in our family was cueing to him, but at school he wasn't receiving cued speech. He was in an oral deaf preschool and then he was in our mainstream neighborhood school where he had kind of very limited cued speech support. They were teaching a para how to cue so she was kind of very slowly learning how to cue, so he didn't really have anything except at home, and I wasn't really sure how it was affecting his language development until we moved across the country back to where I was from in Colorado. The school district, he had cued speech on his IEP, but I think they were kind of questioning how it really worked, and they hadn't had another kid with cued speech on an IEP, so they did a full evaluation of what of where he was, and this was kind of theaha moment, wow, it really worked, and I was patting myself on the back at that point, but it had been three years. He was in the first grade. And they decided to do speech perception and language testing with him, and they tested him with at the time he had one cochlear implant, and he was doing well. We thought he was doing really well with the cochlear implant. And he does do pretty well with the cochlear implant. But when they tested him speech perception, he, with only the cochlear implant, and no cued speech support, he tested about 30% in speech perception with just the cochlear implant. And then when they took off the cochlear implant and did another speech perception test using only cued speech, and no sound at all, he tested at 99% speech perception. So at that point, I knew that cued speech was working for him, and I wasn't looking back at that point, but I certainly wasn't about to turn my back on it then. And he would he has said that he would prefer if everyone cued. It would be easier for him. He uses his cochlear implants most of the day at school at this point. He's in the seventh grade. The language has gotten more difficult for him in terms of taking it in auditorily. So he becomes tired, and he takes off his cochlear implants at times when he doesn't really need to be hearing anything when he's just doing work, when he's reading or doing math, or something where he doesn't require hearing anything. But by and large, he wears his cochlear implants all day long at school. And then when he gets home, now, for the last probably year or two, he largely doesn't wear his cochlear implants at home, and it's because we can cue to him that we're able to do that. He would prefer to not wear his cochlear implants and to only use cued speech because it allows him to not have to think about it. It's automatic he's automatically processing whatever you're saying in his head without having to hear it, and I think that that is how he would prefer life to be. But I just kind of wanted to let you know how that was working for us.

So at home, he'll wear his cochlear implants if there are other people in the house that he can't communicate with using cued speech. He speaks orally. He does cue expressively, but he doesn't really have anyone else in his life that requires him to cue expressively because we can all understand him speaking and we don't receptively understand cued speech in that way, so he has learned how to expressively cue, but he doesn't do it a whole lot. My exhusband knows how to cue. I taught my mother how to cue in a very short amount of time, and she's pretty fluent at cueing. My kids cue. My boyfriend and his kids have now started cueing. So we're all kind of cueing in the house, and that's what it looks like in our house. We cue to him and he talks to us and we understand each other pretty well. At school, he wears his cochlear implants. He has a fulltime cued speech transliterator with him all day, and for afterschool activities, or whatever else he needs. He also has learned Hebrew. We're Jewish and he's having his Bar Mitzvah this summer. He's also learned Hebrew. He takes Spanish at school. He's taken Spanish for two years, and no problem at all with the cued speech transliterator. He could do it without his hearing at all.

His friendships at this point, he has a lot of different kinds of friends. I think the time in his life right now, he's a teenager, he's trying to figure out who he is. He's trying to figure out his identity, so I would say sometimes he's lonely. It's difficult because teenagers I think generally don't talk a lot, and he wants to talk. Like, he wants to communicate with people that way, so I think he struggles a little bit socially. I don't think it really has anything to do with cued speech, it's just him as a person. But out in the world, he does great, you know, he's very independent. Heck talk to anybody. He can hold a conversation with anybody. And his language is fantastic. He's on grade level for everything. He's a voracious reader. He's a fantastic writer. And I don't think that he would be in the place that he is had I not chosen to do this with him first.

That's pretty much the end of my presentation. These are my kids again. These are some resources that I like to use and tell people to use with cued speech, and I've included my name and my Email address on the bottom if anyone ever wants to contact me about it. But if anyone would like to ask me any questions, it's kind of the end of my presentation.

> AUDIENCE MEMBER: Do any of you know of a child who has no hearing whatsoever, no cochlea, so not a CI candidate or anything, who uses cue for literacy purposes? Spoken language is obviously not the goal.

> Yes. The woman, MaryAnn Lachman, who told us about cued speech many years ago, her son Ben has Mondini's syndrome and no usable cochlea. He actually not only used cued speech for literacy and language and academics, but he basically has elected, you know, to also use speech and he's in a phenomenal speech reader. He has absolutely no hearing, and he can talk he's brilliant. I mean, but he can just carry on a conversation with anybody face to face. And there was a little girl in the video that Serena did yesterday in her session or Sunday in her session. She went to our school in Illinois, and she had no her auditory something with her auditory nerve, so she had no hearing, and she couldn't benefit from an implant, and she used cued speech for her, and she became ageappropriate in language and literacy very quickly.