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Welcome back to the All About Audiology podcast. I’m your host, Dr. Lilach Saperstein.

Thank you so much for tuning in. I have to tell you that your reviews on Itunes and Apple podcast means so, so much to me and the show for more people to find the show and listen and join the conversations. On Instagram, we’re always interacting and I love meeting you guys and hearing about your stories, what brings you to the podcast and who in your life is bringing you to seek out this kind of information. So, definitely come join me over on Instagram @allaboutaudiology podcast. And if you leave a review and send me a screenshot, I will send you a little something as a “Thank You”.

Now, today’s episode is about Auditory Verbal Therapy. And if you’ve heard this term or if you know about this, you also know that it can be touchy for some people and I’m always really interested in learning how other people are approaching the entire story, the entire challenge, the entire journey of having a child with a hearing loss, of learning what the options are. Where on the process are they getting their information from? These are all the questions that really occupy me and make me so passionate about this work and in working with parents. allaboutauidology.com/guide

So, of course I wanted to learn more about this very important and prominent approach in the world of Auditory Verbal training for children with hearing loss and children who have hearing aids or get implanted with cochlear implants. And, so, I had the opportunity to speak with the executive director of AV Israel, an Auditory Verbal Therapy organization here in Israel. For those of you that don’t know, about a year and a half ago, I moved to Israel from New York. Actually there is a little bit of Hebrew sprinkled in our conversation when I spoke with Miss Elaine Matlow Tal-El and we’re going to talk about her journey in moving to Israel and her two daughters who are cochlear-implant users and what it was like. They’re now 29-year-old twins, and what it was like when they were young and cochlear implants were just coming onto the scene for children, and also being English speakers in a foreign country. The fact that she has done so much and started this non-profit and established a big supportive organization in Israel is really, really wonderful. It was wonderful to speak with her.

Just a couple quick notes about our conversation. You will hear some Hebrew words but we do explain them. The first one is called, making Aliyah, which is moving to Israel from another country, is sometimes referred to as making Aliyah. We also had this conversation back in July, so you’ll hear us talking about some dates which are not current to right now. I did ask her to just start off with an introduction to Auditory Verbal Therapy for people who don’t know what that is. So here is how she describes Auditory Verbal Therapy.

EM: “The auditory verbal approach is a science-based, an evidence-based practice for rehabilitation based on nine principles, if I’m not mistaken. Early intervention, early diagnosis, a use of technology, mainstreaming, parents as partners… It’s a diagnostic method that follows normative speech and language development markers so you can see that that’s working. But it’s based really on the fact that parents are at the center of a process that is there to expose the brain to be a hearing brain to technology in language, normative spoken language. So I think, I guess what I think AV is today, it’s a parent centered approach where parents are partners with their clinicians to learn how to develop the brain to normative spoken language. That’s what I would say.”

I had the opportunity to meet Elaine two times within a very short span of time. One was at a cochlear implant conference from the company Cochlear at their annual conference here in Israel. It was my first exposure to the community of audiologists and people involved here in Israel after I had moved. A couple of weeks later, there was a training for people involved with communication disorders; SLPs and audiologists who come together and learn about AV Israel. And so, I actually met her two times within a very short span of time, and I said, ‘I must have you on the podcast.’

She was so gracious to join us. She also sent me a video that they often send to people who are first exposed to AV from whatever source, usually after a diagnosis to their child. And when they want to learn more about AV therapy, they may see this video on the website or have this video sent to them, and it’s actually a TV promotion, like a spot on the news about when they were nominated for the Israel Prize for Innovation. She’s going to tell us more about that. So let’s jump right into it.

EM: “In 2014, we got an honorable mention in the Prime Minister’s prize in innovation and entrepreneurship, and for me it was a platform just to be able to get the word out that we exist. There was a teeny bit of money involved which is always good to go into the budget for a non-profit that receives microscopic government funding, so that was always welcome. And it was recognition of what we do and it’s interesting that that segment that was put on television was a story in and of itself. Because there were a bunch of organizations that were up for this award and there was a team of judges that made the choices, the decisions who would get the bigger prize and the honorable mention, there were three of us who got the honorable mention.

One of the judges is a professor at Ben Gurion University, whose daughter at the time Paz Shvartz, worked for the tenth channel and her mom called us after the results came out and said, ‘This is the group you have to do a segment on because this is a story.’ So that’s how we got this on television which was the best thing about the prize. I just sat down with a new family today, and they have a seven-month-old baby with CMV, one ear is certainly cochlear implant material and the other ear, they came here to get a hearing test and to get some advice. Their new to this, she’s a seven-month-old baby today and the dad was completely emotional about the whole thing. I had the great opportunity to be able to show them that segment on television and to show what’s possible today.

My girls are 29 years old, they’re on the older end, they were only diagnosed at over two and got their cochlear implants only when they were three and a half, and this little baby is up for bilateral cochlear implant surgery at the end of this month. She’ll just be eight-months-old. So to see him watching this and to see my girls grow up through that segment and see them today and see how confident and how funny they are, what large personalities they have, it was very moving for both the parents. So that’s the best part of the prize.”

LS: “That’s great. Yes, tell us about yourself, about AV Israel…”

EM: “My name is Elaine Matlow, and in Israel, Ayala Tal-El. I’m from Canada, I’m from Toronto originally and I made Aliyah in 1980, where I got out of college. I got married in 1983 to Eli, an Israeli Yerushalmi. We have four children, four daughters and the youngest two are twins who were diagnosed with profound deafness at the age of two and two months. At the time, it was this huge shock to me because I had no idea about anything about deafness. I have learned that in over 95% of the cases, deaf children come to normally hearing parents, so it’s no surprise that I didn’t know about deafness. I had never really seen hearing aids, except that I had gone with my 93 year old grandmother to get her some hearing aids. So I knew what they looked like, but I didn’t know that children could wear them too, so, that for me was a big eye opener. It was a whole new world.

Through this experience of having something come at you, this curve-ball, I met another family that made Aliyah from Toronto and they had children who were already grown and they had studied in Toronto, through the Auditory Verbal approach. They had undergone rehabilitation with Warren Estabrooks in Toronto. We combined forces, because they came to Israel and they said they wanted to make a contribution to this country and make this available. And I wanted this because I wanted the results of what AV could offer. We did research, we traveled back to Canada, I saw Warren Estabrooks at work, and I saw another center. I met a family here, my sister connected me to a family that had come through AV International. They were in Israel and I met this child, and I said, ‘Whoa, I want this for my children.’

This was an amazing thing, certainly compared to what I had been told after the diagnosis here, that they would never be like their older sisters, that they would never be able to go to school like them, and that they would never talk like them, that they would never, never, never… And I remember my husband saying, ‘Would they be in the Army?’ And they said, ‘No, they couldn’t be in the Army.’ It was all no, no, no, no, no. When I was exposed to the families and the children that I had seen who were rehabilitated through AV, it was just yes, yes, yes, everything is possible. It’s all possible. I do my share, we do our share as a family, we make sure they have good technology working in good working condition. We give the input that’s necessary. In those days, they didn’t really talk about necessary for the brain, that came a little bit later in my understanding. But we do the exposure that we need, we give them the experiences that they need and they should be able to develop spoken language.

So in 1994, we two Toronto families with my Israeli husband, created AV Israel, a non-profit recognized by the Ministry of Justice in Israel and we have been working ever since. We started very, very small, raising awareness that there is such a thing. My own family found this therapist who we facilitated her getting to Toronto and seeing AV and being exposed to the whole process and thinking and the whole approach. Family that we met through Mexico, we had the very excellent, good fortune to connect with Daniel Ling, who was the king, the master, the magician of AV in his day, who we brought to Israel and he lived in our house. He stayed in our house and we had families who were interested to know what this was about and some therapists, who, since we didn’t choose the route that was taken here, we did something else, and people were like, ‘Well, what are you doing?’ So anyone who was interested, we had them come and they met Daniel Ling, they had the opportunity to meet the man who could explain to them all about hearing and speech.”

LS: “Wow!”

EM: “He stayed with us a couple of times and my husband and I, in those days we were filmmakers, my husband is still a filmmaker. So one of the first trips that Daniel Ling was here, my husband took him on a trip to the Dead Sea and they passed a place where there was a camel, and Daniel Ling, who was well over 60 at the time, got on the camel and he went for a camel ride. He lived big and when he got off the camel, he said to my husband, ‘You know, this camel reminds me a lot of the llama I have on my farm.’ So my husband said, ‘Excuse me?’ He responded with, “Yes, Leroy. We have a farm on the Vancouver Island and we raise vegetables, and do this and I make violins and I play in an orchestra…’ Eli came home that day and said, ‘This man is a movie, we must make a movie about this man.’ So that’s what we did and we traveled around the world.

The movie is called, “The Power of Hearing”. And AG Bell carries it and it’s a wonderful movie about his life and the belief. It’s not voodoo belief and it’s based on science, he was a scientist, he was a very respected professional who was totally in tune, literally, with the whole concept of hearing. He had been in the Air Force during the Second World War, he was a radar technician. After the war, he wanted to be a music teacher. He played the violin and he was sent to a school to be a music teacher. He had a hearing-impaired child in his class. And he was like, ‘How can I have this kid hear music?’

Then, he was asked to go to Reading, England where they had the first class for hearing impaired children in a regular school and he became the homeroom teacher for these kids. He built their hearing aids and he developed this AV approach, so as part of the film, which was really, sort of, for me the crystal ball that I as a mom wanted to be able to see the future of my children of where they would be. So it was a good exercise for me, not just an amazing film experience but to travel the world with this man and meet his graduates, meet people he worked with.

So we went to Reading and we met these over sixty year old graduates who were talking and speaking, which at the time in England, was historical. It was unheard of. There is BBC footage of him teaching at the time and then we met those kids, who aren’t kids anymore, people who were in that footage. We flew to Mexico with them where he helped to open the Idea, a center in Mexico City for the rehabilitation of deaf kids through AV strategies. We flew to Montreal with him where he was the Dean of the school for communication disorders and brought AV into academia and trained a whole generation of people in the field. We were in London, Ontario where he was the Dean of the department also, and then we flew to his home and we met a family that lived on Vancouver Island, somewhere far away that he was helping.

We had really the good fortune to see what is possible, and I learned so much about listening and hearing. He always used to say, ‘There’s no reason a child with a hearing loss shouldn’t have a life abundance, and even more abundant than people with no hearing loss.’ He lived a life of abundance, but as a person he gave abundantly. He influenced my life to be abundant and he gave me the gift of giving my children a life of abundance through listening and through hearing. He always said, ‘We’re wired for sound. It’s all about hearing in the brain. We’re meant to hear. That’s how we were built.’ Today with the technology, and he was involved at some point in the early stages of the cochlear implant, but as the technology certainly today, allows you to get to that brain.

So Daniel Ling was a huge force in my own experience, which I was really blessed with that opportunity. So he met parents and he did lectures while he was here, he helped AV grow. Then we met other amazing professionals on the way, Dr. Carol Flexer from Ohio. She has a daughter who lives in Israel, so we met her. I met her at an AG Bell conference years ago but she has come many, many times and met with our families and spoken to our therapists and given lectures about the brain talk that she gives.

We had a wonderful mentor from Connecticut who came to Israel. Her husband was a Rabbi, who had come when he was a rabbinical student in 1949. She was on the boat with the head of the ENT program at Hadassah at the time in the early 50s or ’49, and they were talking and she was an audiologist and he said, ‘Would you come and create an audiology department at Hadassah hospital because we don’t have one?’ So she did, and she helped train some nurses, retrain them as audiologists and they bought some huge device that was available in the 40s, I don’t know what it was like then, it’s not like it is today. She trained them and then we had the good fortune of meeting with her and she became a great force for us to help us learn about AV, offer AV services, make people aware of the possibilities because Israel was not in that space at the time. Certainly, when my children were little, it was clear that the way to go was to go into a special preschool program.”

LS: “Take me back to when you have newborn twins, now they are growing up as babies do, crawling around and doing all the things that you got to do for your babies, feeding them, etc… Did you ever notice that they weren’t behaving like other kids, or weren’t hearing you when you called them? When was that point that you felt that there was something up?”

EM: “I have so many stories, Lilach, we could do this for days. But I’ll tell you, my eldest was not yet five when Donna and Tamar were born, I have four children under four and it was clear that it was a bit of a havoc in our household. It’s the last thing I was looking for that there should be an issue, and they were just angelic, beautiful babies. All four of them were just so gorgeous, wonderful, beautiful little girls and the last thing I was looking for was a disability.

And as they grew when they were about a year and a half, let’s put it this way, Friday night dinner they would have dinner, I would put them in their room that they shared, I would close the door and that was it. How many children at that age like a year and a bit, just go to bed when you put them in their room? I figured, these girls are very well-behaved because they know that there is so much going on that they better be well-behaved otherwise, I’ll lose it. So I thought, you know, that they just sort of got that this is what they had to do.

Then I saw a friend who had twins a few months older than my twins, and I asked her, ‘When did your twins start to talk?’ They told me around a year or something like that and they were already a year and a half and my girls were already a year. I thought, interesting, something was mulling in my mind.

The seminal event which was really the clincher for me, was that I took only one of them to the supermarket and we did our shopping and we got to the checkout, and she was ahead of me. The cashier loaded everything into the bags, and she started to leave, so I said, ‘Tamar, wait for me!’ She kept going, so I said maybe she doesn’t speak English because she had a Hebrew speaking metapelet (caregiver), so I said, ‘Tamar, Chaki Li (Tamar, wait for me).’ She kept going, so I said, maybe she doesn’t know which twin she is, because we used to do a lot together. So I said, ‘Donna, V’Tamar Chaku Li (Donna and Tamar, wait for me).’ She kept going, so I said to myself, there must be a problem.

So that was really the straw that broke this camel’s back. Then we went for a hearing test and the rest is history. They had their first hearing test when they were two and two months old. It was on May 22, which is my wedding anniversary so I will not forget that. I would just like to say that in the last many years, I have completely forgotten that May 22 was Family Deaf Day and it’s back to being our anniversary. It takes us a few hours into the day to remember that this is our lives. This is where our lives have been.”

LS: “Wow, very significant day for sure. So then you got the diagnosis that the girls are deaf, and then you’re told all these very difficult NOs! What were you told actually? Were you told that now they have to learn sign language and here’s the deaf route?”

EM: “First of all, because we live in Jerusalem, and the Micha Jerusalem, their philosophy was not sign language oriented because one of the heads of Micha, in her day, was very much against sign language. So they were very much oral education. So we were told that you have to be sure to seat your children on your lap looking at your face when you read them a story so that they can read your lips and read your facial expressions. You have to be sure that the light is on and not behind you so that they can see you.

I went to see the preschool when they were already two, they were already of the age to be going to preschool. So in order to make a decision about what to do with them, I went to see the preschool and they had a special program and there were about five kids in the room and it was very quiet. Then I saw the kindergarten teacher doing some activity with them and she was over-articulating, clearly lip reading was a big thing then. It was so unnatural to me, the over-articulation was unnatural to me and the silence of children in the room together, so I said there must be another way, there must be something else.

Fortunately for me, my sister did her research and found AV which is very much in favor of total mainstreaming. So while we learned what AV is, we got the hearing aids for the girls. We were very rigorous on maintaining the hearing aids, that they should work well for them as much as possible. We were following their progress. We brought Warren Estabrooks from Toronto to Israel to see the children. On the one hand, we did all we had to do in terms of the technology and the hearing aids and getting that working.

We decided to put them in the same preschool as their older sisters were, in a regular preschool. We found, fortunately for us, an amazing speech therapist who was interested in learning AV after she met this family from Mexico, who would come. And she said, ‘Whoa, where can I learn that?’ Which was so rare to have someone so open-minded and so moved to say that she was willing to move my cheese. She had been teaching in the school for the deaf in sign language here and she said she wanted to know more about this. And that was like, the beginning.

We sent her to Canada, I went to Canada, she learned from Warren Estabrooks and then she started coming to the preschool where the kids were at, at the YMCA kindergarten. In the beginning, she came three times a week to do speech therapy and I joined her in speech therapy because she was instructing me in what to do and the rest of the day they were with other kids doing what other kids were doing in the preschool, even though they were twins, and especially because they were in twins, they were not in the same group. We divided them up so that they had two different groups to be with. Then at the end of that first year when they were in that preschool, we brought Warren Estabrooks to Israel and he saw them and didn’t speak a word of Hebrew. He did some sort of assessment on them and he said that they didn’t have enough hearing for what we wanted for them. He said, ‘If I were you, I would consider cochlear implants in these girls.’ “

LS: “Which was quite new at the time.”

EM: “Totally new! We’re talking about 1993. They had only done adults in Israel at the time and this was in the summer because he came on my birthday, the 23rd of July.”

LS: “Well, Happy Almost Birthday!“

EM: “Thank you!

We started looking. We started searching what we were going to do and we connected with NYU, maybe through Warren, and we flew off that summer. So, they had the implant when they were three and a half. Then we came back and picked up where we left off, and they started moving because they could finally here.”

LS: “Wow!

Okay back to this question of sign language. Even sign language wasn’t really on the table. It was always some sort of oral. You always wanted some spoken modality. I’m getting to the question of, was there ever a place where you met a deaf adult or someone who was coming and giving you this welcome to a new world called deaf culture, deaf world, deaf identity, or that was never brought up?”

EM: “I have to send you our Daniel Ling movie, because as part of doing that movie, we definitely met people from that world. When we were in Vancouver, we met hearing parents, who had a child named Isaac, and they chose to do sign language with him. In Vancouver, there is quite a big deaf culture community and we met this family a number of times. They belonged to a church that had deaf people and signing was part of the language of the church. I remember them saying that for them it was very special to be, my husband would say, chosen. Chosen to have a child like this and to raise that child with sign language.

So, the first time we met them, our girls were already on their way but it was interesting to me and they were very into it. My husband went out to Vancouver Island a number of times and he met them more to the point that the mom said, ‘I’m so tired.’ Isaac was sent off to a boarding school of sign language, a school for the deaf. They could never keep up language wise.

They had three other children and I don’t know where they are at today. I think about them because that choice has such long-term implications because I speak two languages and I speak Hebrew pretty well, and English is my mother tongue. But even my Hebrew is not up to scruff as a native language. And to learn sign language, to be up to a level that is enriching enough for a deaf child [I can’t even imagine doing that]. I read a lot about what the interaction is in a family where there is a deaf child and at some point, that idea that the family cannot keep up with significant enough language that the deaf child will learn and out-speak them, and the need for the community for that child. So that’s disturbing.

And then when we were in Toronto, and it’s also in the film, we went to The Center For The Deaf in Toronto and we met the head of the center who was a signing person. He was such an angry person. Angry at us, he said, ‘The problem with you (through his interpreter) is that you don’t accept your child’s deafness.’ I remember coming home after that meeting and I called Daniel Ling on the phone. Every time I had a question, I would call him. So, I said, ‘What do you say about that, that we refuse to accept our children’s deafness?’ He said, ‘If you refuse to accept your children’s deafness, you wouldn’t do anything with them. What you’re doing is refusing to accept the implications of their deafness. The implications being limited life options. The implications being a bit marginalized, a little bit isolated in a community, so yes, if that’s what it meant to not accept the implications of their deafness, yes that is true. That is true.’

We met people along the way and I’m in Jerusalem with lovely people, very nice people. But I know, having worked in this now for so long and been exposed to so much of this, I know that the underemployment of the hearing impaired. Unemployment of the hearing impaired. I know of the difficulties. I know that there is limited access to sign language interpreting in Israel by law. So, if I have an option, why would I not take the option to give my kids as many opportunities as they have for independent living? Why would I not do that?”

LS: “So I asked this question. This has been a topic on this podcast before, different people on the show coming from deaf education and talking about language deprivation. How people talk about children who have hearing loss or are deaf, have outcomes that their language is impaired because they don’t have enough input. But were they to get language input from sign language, then you don’t see those outcomes and they do develop language. Is the issue that they are not getting sound or is the issue that they are not getting language, because you can provide the language in other ways.

I just find it very interesting that both sides really want the same thing. Everybody wants the best for their child, it’s just a question of what that is and which way to go. Nobody on any ideology says, ‘actually I want to keep my child limited.’ And what I hear from everyone is the issue of isolation where people say that the deaf culture is isolated because it’s a minority group and you only have a limited amount of people that you can communicate with who also know sign language. Whereas, the other side, deaf children who are put in a mainstream, they become isolated because they are having difficulty catching up and they are always behind. So, everyone is worried about isolation.”

EM: “Lilach, I would say, and this is where I come at this as a woman who is going to be 62 next week on that same July 23rd, that I have seen a revolution even since we began. And I had the great, good fortune to intimately know Daniel Ling, who had seen it even longer. Who could have anticipated that this little baby that came in today, seven months old, she will have bilateral cochlear implants at the age of eight months? Yes, she didn’t hear those 20 weeks of gestation, she didn’t hear for the pasts seven months. And with intensive auditory exposure, and everything that goes along with it, she could close the gap.

I have to say, we just came back from the AG Bell conference in Madrid, where we heard a lot, a lot of amazing stuff. Because now I have become a professional in this world, we have lots of material that sort of debunk the myth that if the child learns sign language first, they’ll learn spoken language later better. Everybody’s got their research. There is research to show that that’s not the case. Yes, what they say often is that sign language is good for enhancing for kick-starting language for all children and that could be for all hearing babies, hearing children, but it’s not so for deaf children. It doesn’t do that for them. There’s nothing like hearing. We are wired through sound. There is nothing like it and you heard that presentation this last week about the brain and how the hearing stimulates all those parts of the brain, there is nothing like it!

There was a time, and I think this is where Daniel Ling was even a larger than life personality because it was not available like it is today. And yet, he managed to raise entire generations of young people who can speak and talk. And yes, I’m not saying that they are like everybody else, except Carol Flexer would say that they are like everyone else because everybody is struggling with something. We’re not raising uber-mentch, we’re not raising super heroes, we are raising people to be able to live in the world and succeed and be independent. Isolation is not just the privilege of deaf people. Social isolation of the world we live in with technology and all that kind of stuff, I would say that actually the kids that were raised because we put so much emphasis on communicating, are much better communicators in some normative hearing kids.”

LS: “Yes!”

EM: “Like Daniel Ling says in this film that we did, he said, ‘If I lose my leg, would I not get a prosthetic so I could walk?’ There was a time where he said, ‘There were carriages for crossing the train to get somewhere. And then there were cars and then there were trains.’ The world has moved. Things have changed and the thinking about this for deaf people, it’s such a small population. It’s such a small group. I mean we saw in Madrid, it’s so difficult to do some serious research about outcomes for the deaf, even in America, because the parameters are so different. The age of diagnosis, the technology, the approach to the rehabilitation. So, they had to put six major centrists together, this consortium to be able to do one research project. I mean, it’s such a small population. They are isolated because it’s such a small population but the technology and what we know about the brain, and what we know about teaching language today, they don’t have to be isolated anymore.

So yes, I’ve been in all kinds of forums with government people and I sit at a table with people who support sign language and the woman in government, she was the minister of health at the time or assisted deputy minister of health. She said, ‘What do you do when you are around this table with all these people who are talking about sign language?’ So, I said, ‘They are talking about the past and I’m talking about the future. Because the future, which is here, allows almost every child the opportunity to learn normative speech and language through listening. That’s what AV stands for. That’s what we stand for.’

We have kids who don’t have an auditory nerve and they use the ABI (Auditory Brainstem Implant) and it works better for some and not as well for others. Parents want to try to give their children the option to hear and at the end of the day, some of these kids will need an alternate source of communication. But that’s such a small, small little percentage. Carol Flexer says, ‘A government budget, let’s say for the hearing impaired, should be invested in what is good for the majority of children and not the minority.’

The fact that AV is an organization that gets microscopic government funding is unconscionable in 2019. Other organizations that deal with the older, more traditional forms of rehabilitation are sitting pretty with government funding. We’ve got to change that because this should be accessible to every family who wants to try this. You can always do something else after but the brain as we know, is supple and is plastic and is ready from the very first day of a baby’s life. It gets less and less as they get older. So, when people say you should give kids the option after they want to have a cochlear implant, raise them in sign language if they want to learn speaking, after you could do that, it doesn’t work that way. We’re working against time with the brain.”

LS: “What do your girls say now that they, you know, are adults, when they have grown up with this, being the poster children for this movement in Israel? What is their opinion looking back? What do they say to you now?”

EM: “First of all, when my girls were in the army, they were invited to a day of all the hearing-impaired soldiers. They felt that there was a lot of anger and resentment of them when they came to this day, which I can accredit them for going to that day in the first place. Or when they were in base training, they brought a soldier to do sign language for the hearing impaired kids in the group, and Donna went to this soldier and she said, ‘Listen, you know, you can go on holiday as far as I’m concerned, because I’m not a sign language person.’ That’s when they were cocky 20-year-old kids. Today they are at a point where they embrace who they are.

Tamar just wrote a book when she finished Betzalel. Her final project was about being a hearing-impaired person and she talks there about how she lives in two worlds. She has the advantage of possibility to choose to live in both worlds and she’s so grateful for that possibility. She takes them out when she needs quiet and she puts them on and she’s part of the world out there. They love music, they love dancing, they’re very much in tune with the hearing world and they accept themselves and embrace themselves. They have this other part of them as well.”

LS: “Beautiful!”

EM: “I’m very proud of them because they don’t deny that they have a hearing loss. But it’s not what defines them of who they are. It doesn’t define them. It’s not at the top of the list of who they are. And they are grateful. In this thing that was on TV, you saw that at the end, it was Donna who studied photography at the Hadassah College and when we were doing this, we were asked to give old videos of them as children. I gave them to Donna who downloaded them at the college onto technology so that the TV could use them. It was the first time that she had seen tapes of when they were in speech therapy and this and that and she was so cute. She said, ‘I had no idea. I don’t remember it as a difficult period because it was lots of fun playing games.’ That day she said, ‘Thank you.’ She was grateful that we gave them this opportunity. So, I can live with that.”

LS: “So, I think that the other piece that people from the deaf community say is that not everyone will succeed with these outcomes. The problem, I don’t know, the sensitivity that people have with AV as an ideology, is that if only you do such and such and such, you will have these kinds of outcomes and a little bit of a promise that can’t be made. I think this is also part of the hesitancy that people have about AV, where there are children who are going to have some kind of developmental issues or they had a neurological event in-utero. And then parents are not educated on the fact that not everybody can succeed or benefit from technology and from this approach. So, I wonder if that’s something that you also bring up with parents who come in and say, ‘We can’t really make any guarantees or promises.’ So how do you deal with that piece of it?”

EM: “So, first of all, I say to parents that if there is no other issue that the child is dealing with, if it’s just the hearing, which often it is just the hearing, and yes, we have over 30% of our caseload are kids with multiple disabilities, but if it’s just the hearing, then that child should reach speech and language. If it’s just the hearing and I’ll tell you, there’s all kinds of research that has come out, and I believed this for these multiply-handicapped kids as well, that learning to listen and growing the brain and helping that brain to grow, helps them with their other challenges as well.

And I’m not saying that everybody is going to be a public speaker at the end of the day. My kids are not great public speakers but they will have the opportunity to have developed their brains so that they can do lots of things. They can do lots of things. We have our mentor from Connecticut, she also had a great line. She would say, ‘Show me a better program for this child.’ If you have a child who is multiply-disabled and also hearing impaired, that’s a case. That is a tik, like we say in Hebrew, that’s a problem. That is a package.

So, it’s not going to take it away, learning through AV strategies. The outcomes have to be reasonable for children. I mean, it’s not voodoo, it’s not magic, and we’re not saying what outcomes do you want; perfect speech and language in four different languages. No, we’re not saying that that’s necessarily possible for everybody. You have to be realistic within the world but yes, we do believe that using AV for children with other disabilities is a bonus. It’s a bonus. It helps develop the brain. It helps relieve them at least if they can be more communicative and hear and be able to express themselves, it leaves them some energy to deal with all the other challenges that they have at the same time. And there are statistics that show that 50%, we have this from ABUK, 50% of their case load of kids with multiple disabilities, reach speech and language, similar to their kids in their cohort or normative speech and language for their level. They’re not going to speak necessarily, but many of them do. It depends what the issue is. It’s so complicated because there is so many parameters.”

LS: “A huge variable is if they are able to use the equipment. Like if a child has some sort of issue where the device will constantly fall off of their head or that they can’t tolerate it, these are issues that you see that are overshadowing and overcoming. The hearing loss is not their first, second or third issue. So, I’m learning so much and I appreciate the AV. I just wish that there was this piece where it was like, this is amazing and it’s working and it’s proven *not for everyone.”

EM: “I hear what you’re saying, but I would say first of all, the “not for everyone”, what I find and it’s a great line that I’ve heard along the way is, ‘It could be for almost every child. It’s not necessarily for every family, because it’s a family centered program.’ You have to have a family that wants to be there and to be present and to be invested and to be available and to give that time that’s necessary to really invest in the language input, and whatever is necessary to grow that brain. So, even with these parents this morning, the mom said, ‘Well I work, I don’t know.’

You have to make this work. This has to be a priority and certainly in the early stages and those early years where you have to get in there. So, what does Carol Flexer say? ‘It’s an auditory emergency. You have to get in there and get it going now!’ So, if the family is not on board, that is something we would say to those people that maybe this isn’t for you. Maybe this isn’t for you and you should go to a different program where you would get more support, because it’s gotta be that the family will want to do it.

At the same time, Carol Flexer says, ‘You don’t need to be a big hero today to do AV, because it’s early diagnosis, early intervention.’ I mean it’s a whole different kettle of fish today. And I would also say that I understand that there are those cases that you’re talking about, but listen to this. You’re talking about 2 in 1000 babies are born deaf, already it’s a small population. Within that, 30% of that small population have other disabilities. Within that, the number of those who let’s say could not wear a cochlear implant because of a physiological whatever, it’s so small that I would hate to throw the baby out with the bath water. And that’s what I find sometimes people like to do. They focus in on those rare instances where it’s difficult, where it would be very difficult to overcome and make that seem that that’s the mainstream. Well it’s not. It’s not! Every family has the right to know about this possibility, to learn about it, to study it and make the choice.”

LS: “That’s exactly right!”

EM: “But in Israel, I have to say, people are not really given that choice in that because it’s overshadowed by other things. I feel that I’m lucky, and this is when I see families, we had a family come a long time ago and the dad was concerned that maybe it wasn’t just the hearing. You know that if it’s not just the hearing and it’s cognitive and it’s other physiological issues, it’s more complicated. How relieved he was to know that it was just the hearing. Well really, if it’s just the hearing, this is what should be done. Should, could, it’s possible. It brings amazing outcomes and gives these kids and the families a life, an integral life that the children are part of the community and not sent off somewhere else. Speaking the language of the community. It seems to me the natural choice. It should be the first choice, as we say.

And if it doesn’t pan out and the markers are not, the bench marks are not met because of whatever other issues are going on, it’s a diagnostic approach. At some point you say, ‘Listen, we might need to add something else.’ And we have had children where we’ve had to add more visual communication to or a tatach, one of those communication boards. And they will not consider AV children but we’re not going to hit our heads against the wall just to say that these kids are doing AV. It’s not good for us as an organization and it’s not good for the family.”

LS: “100%!”

EM: “And it’s not good for the child so we’re not stubborn at all costs.

LS: “Yes, it’s so interesting again, that what I’m hearing from you is echoing what I heard from a deaf educator, who was saying that the children who will develop speech and language to the extent that they’re going to go to regular mainstream college and be those superstars who also play violin and also, and also, and also. Those cochlear implant users, they’re the outliers, they are the superstars, but the majority or a big part of the people with a diagnosis of deafness will not reach those outcomes, will not have those kind of opportunities for other reasons, whether it’s their access to rehabilitation or their access to technology or whatever else is going on. But the promises being made about the outliers where the middle is getting lost. Which is almost exactly that, just switched.”

EM: “Well I don’t know if your deaf educator is in Israel because in Israel, universal screening at birth, bilateral cochlear implants in the health basket, support for rehabilitation, even if you come to AV, you pay privately because it’s not government sponsored but you get most of the money back from your health plan. So, I don’t buy what that person is saying. I can imagine if you are living in Africa, okay. But if you are living in the Western world today, absolutely, I don’t buy that line. I just don’t buy it. At the end of the day also, and we have proven through all kinds of research and stuff that doing the AV thing, saves money to the government and these kids become all kinds of, I’m not saying all of them are going to be violinists and brain surgeons, but they can all hold a job, be independent. My children are financially independent. They work in the field that they studied, they are living a wonderful, full life in the mainstream and they are hearing impaired. I think that that’s a pretty good outcome. I’m not talking about the outliers, they’re not going to get the Nobel Peace Prize. So, I don’t buy that line.”

LS: “Although your children are very special. Hahaha.”

EM: “Of course they are very special, because they are my children. They are very special but I don’t buy that. I think that’s a cop out to say that successful kids are the outliers. I think that that’s really robbing children with hearing loss an opportunity to live in the mainstream.”

Wow, thank you again to Elaine Matlow Tal-El for coming on to the podcast and telling us and teaching us all about AV Israel and telling us the story of bringing AV to another country and building up the resources and services as a non-profit as AVIsrael.org. I’m just really grateful that she shared her story with us and that she did something with her experience as a mom of these two girls and that she then is continuing to provide help and services and support for hundreds and hundreds and hundreds of families. Even though there might be some things that we might disagree on slightly, really, like I said, at the end of the day, all of us want what’s best for the children, what’s best for each individual family, in each individual kid.

But it certainly was very interesting hearing her talk about some of the issues that when you look at the diagnosis, the rehabilitation, and the treatment of children with hearing loss from a public health perspective, and you know, the long run and things like budgets. Because especially here in Israel, which has socialized medicine, all of the health insurances really runs specifically, directly through government funding and so having cochlear implantation as part of the automatic health basket, that’s what it’s called, the services that anyone can have access to, that was a huge, huge push and advocacy within the last couple of decades. That’s new things and to hear from someone who was on the front lines and on the forefront of all those conversations was actually extremely beneficial for me as someone new to this country and I think interesting to our international audience, because so many of you are listening from other countries and not just from the US or Canada.

So I hear from you guys on Instagram, as I said I love talking to you guys, so definitely come on over to @allaboutaudiology podcast and send me a DM or leave a comment and let us know what you learned from this episode. What you thought about our conversation, what you agreed with or disagreed with. And don’t forget that if you leave a review on Itunes and send me a screenshot, I’ll send you a little something. You can do that from the Apple podcast app and that would mean so, so much to me and help more listeners find the show. Making this podcast is a labor of love and I’m so grateful that you’re here with me.

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