All About “Parent’s Intuition”- Episode 29 with Avivah Werner
Lilach Saperstein 0:05
Welcome back to The All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. I’m so excited that you’re here. You’re going to love this episode because it combines everything that I’m all about. It is about audiology but also about the specific challenges of parenting a child with a hearing loss. I have a special guest for you today. Her name is Avivah Werner and she has a lot of experience and knowledge and expertise in parenting and a lot of wisdom to share with us. I really am excited for you guys to hear the conversation that I had with her and I definitely would like to send you over to avivahwerner.com to learn about her parenting leadership services. You’ll also have the link in the description. In a transcript. There’s always full transcripts of every episode at allaboutaudiology.com. So, let’s jump right into the interview and welcome Avivah!
Welcome back to The All About Audiology podcast. I’m your host, Dr. Lilach Saperstein. And today on the podcast we are talking about parents and the importance of parents’ intuition when it comes to anything having to do, I mean in general medically, but specifically in audiology, and I have a special guest with me today, mother par excellence and she will introduce herself. Welcome Avivah!
Avivah Werner 1:29
Hi, Lilach, thank you so much for having me. So, I’m Avivah Warner. I am-I didn’t know about the mother par excellence part but I am a mother. And like all mothers, I’m just trying to do my best every day and I’ve been blessed with a number of children, my youngest two do have special needs. And in regards to the hearing issue, I have a seven year old who we’ve been dealing with, a seven year old with down syndrome specifically. And I also have a three year old who has Down syndrome. So, we have been dealing with hearing issues.
Lilach Saperstein 1:59
Okay. So, can I ask you, before either of them were dealing with any of this, what did you know about audiology? Had you heard of Audiology at all? Like, what was? What did you know before all this became a big part of your life?
Avivah Werner 2:15
Very theoretically, I’m a pretty well educated person. So of course, I knew about audiology, but about the specifics, I didn’t have any reason to know about anything more specifically, because none of my kids needed that kind of help and because it’s not my specific area of specialty.
Lilach Saperstein 2:31
So, yeah, I mean, that speaks to a greater point. That’s why I’m asking because a lot of people they never had to deal with it. They really don’t know, unless maybe they have a grandparent who has hearing loss, someone in the family or something like that. But audiology is really not front and center in people’s minds until it has to be.
Avivah Werner 2:49
until you need it, you don’t need it.
Lilach Saperstein 2:52
Yeah. Okay. So, tell us, when did it come up? What’s the timeline?
Avivah Werner 3:00
Well, because my baby had Down syndrome right away, he was tested at birth. And then it was recommended to continue testing him, because children with Down syndrome often have hearing loss. And this I knew was going to be very important to me because hearing clearly is very important to speaking clearly, and speaking clearly is a sign of intelligence. And if you speak unclearly, people assume that you’re not as intelligent. So, I felt from the time he was a very young infant, this was something important to me to stay on top of. However, that’s not necessarily what happened. I did do regular testing when he was an infant and it repeatedly showed his hearing was fine. The hearing test under sedation, everything was tested and it was great. Somewhere along the way, I didn’t continue with the hearing test. I think as I was just so busy with so many other medical things, many medical issues, many things being tested therapies, dealing with my other nine children at the time. He also was born less than a year after having made Aliyah (moving to Israel). So we were in a new country dealing with a new language living and I was living in the north at the time with very unsupportive doctors and traveling all over to different cities for every kind of appointment. So, it was pretty hectic and pretty harrowing at times. And, so when it seemed like the hearing thing was fine, I didn’t feel the need to keep pushing and pushing. And, at a certain point, when he was about four, he did a hearing test, which showed he had some hearing loss. So, I said to the technician, to the audiologist doing the testing, ‘So what do we do now?’ And she said, ‘Well, it’s mild, you don’t do anything that doesn’t need to be treated.’ And I was actually happy to believe her. I was happy to let that be true because there was so many other things to deal with in life that I was happy for that to be the case. In any case, I took the findings to our ENT, who was excellent and considered really the top here in the country. He looked at me and said, ‘What did the audiologist say?’ And I told him, ‘Well, she said that, since his hearing was fine as a newborn and was tested in that way, it’s probably fine now and we don’t need to treat it.’ So, I said, ‘Okay, that makes sense to me.’
Lilach Saperstein 5:13
Did you know at the time, were they talking about sensory neural hearing loss or conductive hearing loss, like where in the ear the issue was?
Avivah Werner 5:21
No, I really don’t know. I don’t remember now, because that was about three years ago.
Lilach Saperstein 5:28
The reason I’m asking you is because were they saying, ‘Oh, this looks like maybe just fluid or something that might clear up?’ Or did they also do bone conduction testing at the time? I know, it’s like getting technical, but I’m just wondering.
Avivah Werner 5:43
I don’t, I’m sorry, I don’t remember. Even now I feel this is something I’m not really, I don’t feel very confident that I can tell you that I read the hearing test well, and I can tell you the results. So, I don’t know. It was tested and they said, ‘Well this area, whatever the question was, whichever of those it was that you asked about, and I believe was conducted, but I may be mistaken, since it was fine, and he’s a baby, probably nothing’s happening. And he’s probably not responding well to the testing.’ That was the assumption. And about two years, a year and a half later, I did the next step. And, by the way, in the next year and a half, when he went to speech therapists, he had two or maybe even three different speech therapists in the next year and a half. Each of them asked, because he had very, very delayed speeches, the quality of his speech, the words were great, the vocabulary, and the ideas he expressed were excellent. But it was so unclear that it wasn’t excellent. And it was that most people just couldn’t understand him. Even family members really had to work. And we knew that he didn’t start talking until he was five. I remember when he was little, I used to just wonder. So, he was not even speaking by the time we had that hearing test when he was four and a half. And when he was five was when he first started saying his first words. We went to a new speech therapist and of course they asked about his history and they asked about his hearing, have you had his hearing checked? So, I responded with all the past tests and comments of the recent audiologist. And she said, ‘Well, that makes sense to me. And what did the ENT say? And I said, ‘Well, the audiologist said this. And the ENT said this, and here are the results.’ And she said, ‘Okay.’ And again, honestly, I was happy that everyone was agreeing that he didn’t need it, because who wants your child to need hearing aids? You want to know that it’s just like a little thing. I did not understand what mild hearing loss meant in terms of what he wasn’t hearing. And I was relying on these people, on audiologists, on the ENTs, on a speech therapist and the next speech therapist. The next speech therapist, later when she found out she was flagellating herself, and she said, ‘I can’t believe it. I can’t believe I missed it.’ Because she had the test results in front of her and it was, you know, this was her training. And she felt very, very badly that there was this hearing loss that has just gone undiscovered. We were very fortunate when he was six, he went into a school with an excellent speech therapist. We had done a hearing test right before the school year, you know, so I would have the fresh hearing test. Again, it showed a mild to moderate hearing loss. This time, I’m really grateful to this speech therapist. She’s the one who said to me, ‘This is serious and it needs to be taken care of. I went to the ENT, who again was really not convinced. And he sent me for another hearing test. We spent another year going for hearing tests, repeated the hearing test again and again because he wanted to see consistently when you have the same results. It took months to get appointments and it was very, very challenging. It was a big time lag. I was on top of it. I was making appointments as fast as I could, but there’s just the logistics of the healthcare system here and the appointments and stuff. In time this speech therapist caught on something or realized, and she said, ‘Do you feel like he doesn’t hear things?’ And I said, ‘No, he’s very responsive. I really don’t see that at all.’ And she said to me, ‘I think he’s reading lips. I think he’s compensating to a very high level.’ And when she said that, all of a sudden, I felt sick. Because I remembered when he was a little child, and I had these flashcards that I made, you know, big flashcards by, like half of an eight and a half by 11. On one side, there was a picture on the other side was the word. And I would hold them up and I would say, ‘Rabbit and I would turn it around and showed him the picture of the rabbit and show him the word, and his eyes would go to my mouth, and I always thought, why is he looking at my face, and sometimes I would move the flashcard over my lips so that he would look at the word because that’s what I wanted him to see. As soon as the speech therapist told me that I just had this pit in my stomach, and I thought, ‘Oh my goodness, he is reading lips.’ And she said to me, ‘You can test it. Look at him when it’s dark in the evening and see what happens.’ And I did it that evening and it was clear right away and I was kind of horrified just thinking about it.
Lilach Saperstein 10:17
You know, when you’re able to connect the dots like that looking back, it’s 2020. But when you’re in it, and everything’s just, you know, day to day, we get that.
Avivah Werner 10:26
Right. Right. I am very grateful. I really will always be grateful to this speech therapist, because she’s the one that saw it and she didn’t explain it away and say, ‘Well, kids with down syndrome, they have hearing issues and kids with down syndrome don’t speak clearly. Kids with down syndrome don’t understand. She’s the one who said to me, ‘Your son is very bright. And the way his lags, she said, are not typical of a child with Down syndrome. His lags are typical of a child with a hearing loss.
Lilach Saperstein 10:52
Yeah. I remember that line exactly in school where the professor said ‘Just because it’s more common. and more likely among this population, doesn’t mean we shouldn’t treat it.’ And I just like remember that line and then I read your post, your story. And I said, This is what happens when, you know, sometimes the healthcare look at one thing. But I also think, you know, you mentioned that you moved countries and then also you moved within Israel, different cities. And the way that the whole appointment system goes here where it can be months from when you make an appointment to when you get in. And because if there was something conductive, like middle ear fluid or something like that, you do want to see that it’s sticking around and not like a fleeting thing. So, there’s like a small, I don’t know, like, comfort and knowing that like, not everybody necessarily meant harm along this line. Like there was a small place where it’s like, okay, we can wait to see what happens. And oh, it’s a new case. Again, it’s a new case again to all the new people. But, in no way shape or form is a mild hearing loss not important, even though it’s called mild. That’s a very important point and something that I think our listeners really will appreciate. And it’s something that I talk about a lot, the idea that understanding what the diagnosis is, is like prerequisite step number one for everything. Because even knowing is it conductive versus sensorineural is a pretty important thing. And actually it’s something that I offer people that I review their documents and all of the test results to really get a good grasp of what it is. And then also the degree like mild, moderate, moderately severe, profound. All of these are extremely different in how the person then interacts and communicates with the world. So, even a mild hearing loss, let’s talk a little bit about how does it play out like you’re saying, difficult to hearing when they’re not getting also visual reinforcement. So, if it’s dark or the person is far away, or they can’t see them, if it’s a noisy room, once there’s noise in there, and then it’s super hard to take out the signal. And the mild hearing loss also means that the softest sounds of speech are being missed. And the softest sounds of speech are usually those “S” at the end of sounds, or the high frequency consonants, like “th”, or the letter “F”. And these are super important for speech development and communication. So tell us more about how how it presented in your son?
Avivah Werner 13:36
Well, as I said, I wasn’t really noticing it originally as a speech delay. I’m sorry, there was a speech delay but I wasn’t recognizing that it was due to hearing. But there was always a lag when we would say something. And I thought it was a processing issue. It was processed fully, that we would say something and he would take a moment and then I recognized afterwards. He was trying to figure out what had just been said, you know, to fill in the missing information that he didn’t hear.
Lilach Saperstein 14:05
To think how, like you said, how bright he is and how hard he had to work…
Avivah Werner 14:08
Yeah, that is really the heartbreaking part because you take a child who already has a disability and who already has to work very hard. He’s growing up in an English speaking house, and I put him into school. He was homeschooled until age six. And the reason that was relevant for his hearing loss is because in the home environment, he performed great. I spoke clearly, I looked directly at him, there wasn’t lots of background noise. So, we weren’t seeing, I don’t feel like he was missing all the things you’d be missing in the classroom environment. Because he could hear pretty well, he could compensate very well. In the classroom environment, and I recognized how much he was not hearing, it was a bit heartbreaking. Here’s a child, a six year old trying to learn the language, not being able to communicate because he doesn’t have Hebrew yet, and really struggling to learn the language because he’s not hearing a lot. So, it was quite emotional for me when we first got hearing aids and we brought them home. Hearing aids has not been an easy story for us. You know, once he finally got approved, there was a whole process until that happened. It was a really long time. But, they said to sit down with him for an hour. The first time I sat down with him, the only way to get him to keep them in was to keep him very occupied. So, I was sitting with him and playing games with him and talking very interactively with him. And we were playing kind of like a word game, a reading game. So, it said, “Dad”, so he said it to me, like “Da-ddy”. Now, he’s never said daddy in his life. He said, “Da-ey”, he skips the middle D. And my eyes just filled with tears and I thought, ‘he has never been able to hear it clearly enough to say that’. He didn’t even realize he said something different. And we played this game and he said a few other words that he had never said before. And this was not speech therapy. I wasn’t practicing with him. He just naturally said things properly. And it was really like, “Wow!” It just hit me that he really has not been able to hear. It hit me very emotionally just seeing the difference. Of course, intellectually, I already realized there was something going on here. From like, one minute to the next minute with the hearing aids in and the hearing aids out. It was just very, very striking. I would love to say that it was still wonderful from then on, and he happily wears his hearing aids and spoke perfectly all the time. But that has not been our experience. Hahaha.
Wow, yes, I can imagine. When you said, ‘Okay, we’re going to get hearing aids, this is the treatment that needs to come up, what were the next steps? What was the reaction for you and for maybe other people in the household or him himself? How was that received?
It was really fine. From the time in August when he was six years old that I did this first test until he got approved, we had over a year of repeated hearing tests. And finally, I just switched to a different doctor because I said, ‘I just need the approval. I can’t wait three more months just for final approval.’ I had a lot of time to process it. It wasn’t like they said there was a hearing loss and one month later, we were getting fitted for hearing aids. There was a lot of time and in that time, I just felt like more and more of course, no one wants your child to have any kind of disability or challenge or anything that makes them look different or feel different. But what do we want most of all is for our kids to function effectively in the world. And, so, it wasn’t really a big deal for me that he had hearing aids. I wanted them! As soon as I knew there was that hearing loss, immediately I said, ‘I want him aided. He needs it!’ I really wanted it and had to do a lot of pushing for it. But pushing doesn’t get anything done faster here. So, I had to learn to say, ‘Okay, I’m staying on top of it. And I’m not going to get stressed. And I’m not going to get frustrated that my child needs this hearing support. And there’s this bureaucratic system that’s denying that.’ I felt like I just wanted to make up for lost time. When I thought about not having done anything a year and a half earlier, I just wanted to remediate that last right away so that he wouldn’t have any more. And the fact that here we are almost a year and a half after that hearing test, and we’re still not there yet. There’s a lot of acceptance as a parent, I think, for me. That I have to find and say this is just part of the journey. And it’s okay. It’s okay that it’s imperfect, and we’re just doing the best we can,
Lilach Saperstein 18:49
That’s right. And there’s absolutely no way to know how the story would have been different. Would things have gone a different way and what if, you know, because there there are 100 other factors that would affected the story that way. Everyone has their own journey and we hear from parents who, like you said, they have the diagnosis maybe like at weeks old, when their baby is so, so tiny. And then, now they have to look at their teeny tiny infant that they just brought home and they’re still like getting over the whirlwind of having a baby and meanwhile they’re dealing with surgeries and, or whatever else. So, no matter where you come in in the story, there’s a big process that goes after that.
Aviva Werner 19:32
Yes. And what I was going to add there is that, for me, it’s important for me not to focus on what if, where would he have been? How could we have avoided this? But instead, to say, ‘Look what we did. We did so many things so well. It’s not just that we did the best we could. We did a lot of things really well. He’s doing remarkably well. He’s a very happy, very healthy, well integrated child who has unclear speech, but he has great self esteem and he is really smart and really bright and has friends and loves to learn. He’s just doing really, really well. So, I have to say, ‘Okay, let it go.’ Alright, you could say that I dropped the ball, you could look for other people to blame. But, I was more inclined to blame myself and say I dropped the ball, I dropped the ball. How could I have dropped the ball? I knew that from the time he was an infant how important hearing was for intelligibility and for being perceived by others as intelligent. And I just had to say, there has to be humility as a parent. Humility and forgiveness of yourself. We do the best we can. And if we were meant to do better, we would have done better. If we could have done better, we would have done better. Everybody, we’re all doing the best we can right now. And that’s all our kids need is for us to do the best we can. Even though sometimes it feels like it’s not enough. Sometimes it feels like, ‘But I wish I knew more and wish I did better’ and you beat yourself up over the head again and again with that hammer. It’s not productive. We are where we are today. And we just have to move forward.
Lilach Saperstein 21:03
It’s one of those huge things people say, you know, you would never talk to someone else like that. If you saw another mom going through this story, you would never say to her, ‘Well, you missed it, lady!’ No, you would not say that. You would totally look at her whole circumstance and understand that there were a lot of things going on and professionals were telling you their professional advice, one after the other after the other. So, you know, I think that that is a helpful thing to sometimes look at yourself the way you would look at others, even though it is very hard. And when you start talking about that self blame that’s like, right there in the motherhood story.
Avivah Werner 21:42
You all recognize that right? And I’m a parenting consultant. So, I really hear other people’s stories. And I really tell people this all the time and I deeply believe it. You did the best you could, you did the best you could! Just forgive yourself and let it go and move on. But wow, in ourselves, there’s always that piece. I have to constantly have awareness in myself and say, ‘Wait, stop, it’s not productive, the self shame and the self blame.’ Why we do it or whatever doesn’t even matter. It just matters that it’s not helping us. I want to and I try to be as kind to myself as I am to my clients, my neighbors, the grocery store clerk, the taxi driver so I can show my kids that it’s a job for all of us. To really just love and accept ourselves as we are is the journey of a lifetime.
Lilach Saperstein 22:33
Can you tell me a little bit more about the parenting consulting you do? That’s so interesting.
Avivah Werner 22:39
Well, I work with clients from within Israel in person and over Skype and phone consultations for people outside of Israel. People come to me actually for all sorts of issues. Initially, I started specializing with kids who are dealing with a lot of oppositional defiant behaviors. Actually, I really wanted to focus on parents with teenagers because I felt they are a very under-served population. The population has a lot, a lot of issues and they’re not being addressed. But what I found is the parents felt like, by the time they got to that age, they just had given up. They felt like there’s no hope, we’re resigned to it. So, I found that most of my clients ended up coming at younger ages, which is actually really nice when you can help that child who is seven or nine or eleven with those significant, traditionally, the oppositional-defiant stuff, a lot of behavioral issues, resistance, and help their parents. It’s part of the process for parents, via their children, learning to love and appreciate their children where they are, and reflect back and then guide them appropriately. That place of just seeing that beautiful human being and dropping all the expectations and along with the expectations of our kids, it’s dropping the expectations of ourselves. I have had someone say to me, ‘I never thought I would have a child who was a monster.’ We know what kind of parents have those children, right, like the temper tantrums in the store and breaking things and being wild. It’s not going to be us, and then these parents have those kids and it kind of shatters a bit of their self-image. And so, it’s not just telling people well, this is how you get your child to act the way you want them to. Everyone wants me to tell them how to get their child to act the way they want them to? It’s not about that. It’s about building a relationship, building trust, building healthy communication, communicating to your child their deep worth and value and their potential, and believing in that potential. And that is what I tell people all the time. You’ve got to believe in their potential, especially the times when you don’t see it, especially when it’s the hardest. That’s when they need us to believe in them the most. And then after you got that emotional connection, then you can start to guide your children and make suggestions. But they’re not interested in what you’re going to say, they’re not interested in your feedback. They’re for sure not interested in your corrections of their behavior because they feel the same as us. If we could have done better, we would have done better. If our kids could do better, they would do better. Even these kids who are completely out of control, they’re actually all doing the best they can with the skillset they have and the tools they have. They’re doing the best they can to manage life. And sometimes it doesn’t look good enough to us, but we have to remember, we all want to be successful. We’re all trying to be successful every day in every situation. And if sometimes it looks like we’re failing, well, our skill set is just not up to that situation. Maybe I’m overtired, you know, maybe I got up at four in the morning, I was up two times in the night with a sick child. And so, I’m not up for being kind and reflective of my child, you know, when they’re having trouble transitioning and acting out because I’m tired and I have my limits and I’m not being nurtured. So, you know, the same person, we all have different skill levels at times. But that doesn’t mean in my day when I’m tired and grumpy. I’m doing my best when I’m tired and grumpy even though it looks really bad, that is me doing my best on that day with the challenges that I’m dealing with.
Lilach Saperstein 26:10
With the resources you have. Yep.
Avivah Werner 26:13
Lilach Saperstein 26:14
So, tell me more about how your experience with the work that you do, which is supporting other families with, you know, the challenges that they’re going through. How has that affected your relationship with your son, specifically, but you know, all the rest of them?
Avivah Werner 26:30
It really goes the opposite. My work came as a result of my work with my family first, it really very naturally evolved. We have a large family, we have 11 children, my oldest is 26 and my youngest will be three in a month. And my first 10 children are biological. A child with Down syndrome was my 10th child. My 11th child is completely a child of my heart, of all of our hearts, but I did not give birth to him. Someone else had that pleasure and we took him home from the hospital when he was two months old. So, he had been left there by his parents who, I don’t want to get into that, but unfortunately, it’s very common in Israel, for babies with down syndrome, to be advised not to bring them home. So, our baby was one of those. And our family has been very blessed by having him come into our life. Gosh, it feels like I unfairly weighted it to the younger side, right without talking about all my older wonderful children. But going backwards, I have homeschool my children, I’m homeschooling for 19 years now. So going way back, people used to say, ‘Oh, your kids are so well behaved.’ And I felt in myself like a lot of conflict and it felt hard. And I was constantly seeking better ways and better ways and better ways of communicating. And I would read the books and I felt like these books are not addressing my needs with five or six kids. I mean, at one point, I had nine children homeschooling at a time but when I was reading the books, I had a younger family. I was feeling that this advice is not working for this amount of people, this many interpersonal relationships, this many responsibilities for me as a mother to keep the house running and keep everybody happy and be the homeschooling parent. It was just not very helpful.
Lilach Saperstein 28:21
I know, sometimes I just think about the fact that everybody needs to eat three times a day.
Avivah Werner 28:26
It’s just so unreasonable, right?!
Lilach Saperstein 28:28
My goodness, can’t we charge them once a week, just keep them charged and full?! Hahaha. That’s a great idea. So yeah, just add the feeding responsibility alone, then you add laundry and then you add the housekeeping, and it’s like, oh yeah, they have to also have a soul that needs tending to at the end of that list, like, hmm, maybe it shouldn’t be at the end. Hahaha.
Avivah Werner 28:52
So, I always have this vision of having this family that was really harmonious. And I thought maybe that’s just not possible. But that was the vision I kept working toward. And I kept seeking out materials and learning and not all from parenting courses. I found learning from the leadership area. That’s actually my business is leadership parenting. I found those ideas were really helpful to me. And it’s just a lot of personal development being a parent, isn’t it? We’re just constantly learning and discovering things in ourselves and things that in our children. I started applying these ideas bit by bit. My kids were my guinea pigs. Some of my experiments were better than others. There are things that like, I’m really sorry that you know, but fortunately, it was a long time ago, my children are very forgiving. And people started noticing these results with my kids and with my family, and they’re like, Oh, you guys just like seeing each other. Someone just came to Israel. She had a family member who lived across the street and she said, ‘Well, you guys have a reputation like the family that they just love each other and like they sit around.’ I think they must have come over when Shabbat afternoon. ‘They just like sit around with their arms around each other singing’. My kids afterwards said what, ‘When do we do that?’ They do actually, but it’s not all the time. And people just started asking me years ago, like, ‘How are your kids like that? They just listen to you.’ And they’re not just listening because it wasn’t about discipline. I once had someone come over who is a very strong disciplinarian. And she said, ‘I cannot see what you’re doing why your kids listen to you. You’re not threatening them, you don’t yell at them. But like you just say something and they do it.’ And it was about the relationship. So really, my work evolved from my family life as more and more people asked me and I said, ‘Okay, I really see there’s something I don’t want to say missing in the parenting arena, other people have said things that I’ve said, but there’s so much focus on techniques and strategies and prize charts and sticky stars and we sometimes forget forget about just the core of it. Maybe sometimes we don’t even know the core is relationship relationship, relationship. A child who feels better, who feels loved and feels safe, is a child who does much better and is going to respond much better to you. So, that’s what I started doing in my own life. And then it just kind of evolved professionally. And I’m so grateful I now have a few married children, I have a few grandchildren. And it is beyond gratifying to see those adult children have their own lives and to watch them starting their parenting journey like 10 miles ahead of us. It’s natural to them to talk and the way they act and they’re so loving and responsive and respectful of their spouses and of their child. Each one has a child, and it’s just beautiful. It’s very, very beautiful. So, that’s how it kind of got started.
Lilach Saperstein 31:49
That’s incredible. We have many, many parents listening to the podcast, many of them have children with hearing loss, or also people who are working with children who have hearing loss. Speech therapists, teachers of the Deaf, audiologists. And I think you’re in a very unique position to give some loving words of wisdom and advice to our parents and our professionals. Please.
Avivah Werner 32:16
Words of advice. Oh, gosh, that’s so hard.
Lilach Saperstein 32:20
I’m putting you on the spot right there. Hahaha
Avivah Werner 32:24
But yeah, that’s really challenging.
Lilach Saperstein 32:26
I can rephrase. Listen, if there’s one thing that you would want someone to feel that they’re not alone, that they have some sort of direction and hope, like what’s the one maybe anchor thought or affirmation or thing that they can hold on to to carry them through the challenges?
Is that harder or easier?
Avivah Werner 32:51
It’s just such a long answer. I feel like for me, all my challenges have been having a relationship with whatever you call it, “Source” “Higher power” “God”, that is so primary to me that I believe everything happens for a reason, that there are no mistakes. It wasn’t a mistake that all those professionals said what they said, I was meant to be right where I am. When my child, my first child with Down syndrome, my seven year old was born, the doctor said to me I didn’t know about it was a surprise diagnosis of course. And they gather these three experts, you know, to deliver the news, they did it very carefully. And then I met again with three experts from three top departments. And they told us the news and I responded whatever way I did, which was pretty calm. It really took me about 30 seconds to process, Oh, okay. Because I felt it’s going to be fine. It’s going to be fine. A child is a child, and a diagnosis does not change that it’s just a child. And so they said to me, we never had anyone respond like you, I guess they usually treat people like you’re a china doll and you’re going to shatter into a million pieces on the floor. You can see it in their eyes and in their face and the way they’re waiting for you to collapse. And they said we don’t know what it is. Is it emunah? Is it faith? And I said yes, we feel this child as, maybe I don’t know if it’s faith, but I said for us, this child is a gift and is precious to us just like any other child. And so for me, my children with disabilities, I haven’t looked at them any differently. Every child is just a child who needs the support that they need. I haven’t seen such a thing as any perfect child. My kids are all smart and bright and beautiful. Like all our kids, right? All kids are just beautiful and perfect in their essence. They really are. And since this was my tenth child when I got this news and I thought I’ve been through enough challenges as a parent because that’s what happens. Our kids aren’t all born with exactly the personality that matches us. And every child challenges us to grow in a different way. And I told you, that was my 10th child, right? So I had plenty of challenges. And I thought, okay, we know all these other kids were born “normal”, I hate that term normal, but normal. Did that stop them from having life challenges and things they had to go through? Absolutely not. And I thought, okay, so he’s gonna have his challenges. And some of them are going to come with having Down syndrome. And some of them are going to come from just being a human on this planet facing things that you don’t yet have the skills to know how to deal with. He’s going to have to learn to deal with that, just like I do.
Lilach Saperstein 35:45
I have to tell you, it’s incredible that you’re talking about this, because when that thing happens when the same message comes at you a few times, and you’re like, ‘Okay, okay, I’m listening.’ Our previous guest on the podcast, Elaine Matlow, from AV Israel was talking about auditory verbal therapy and children who get cochlear implants and then have to really have this whole parent centered, family centered approach to developing speech after cochlear implantation. She was talking about how, you know, just because someone has a diagnosis, or a different kind of journey for their communication development doesn’t mean that they get a pass for a monopoly on isolation. Like not only deaf children have isolation, children who have hearing sometimes struggle with being isolated and not included and bullying and all these things. It’s a matter of do you make the connection with the problem is connected to the hearing, this other problem is connected to behavioral, is it relational and then everything goes back to the diagnosis. Or ,like you said, maybe it could have been there regardless of the other diagnosis or challenge or issue. And then, I think that it’s just like one of those things, we all have problems. Hey, hey. Hahaha. Welcome to reality! But sometimes nevertheless when it’s a specific kind of field and then there are meant to be people who are experts in that field who can then guide you and give you good recommendations and do proper diagnosis and provide proper treatment, and when that doesn’t go the way “it’s meant to”, or it’s expected to, then that probably also takes like some of the faith away from the system, from those professionals. So, I wonder if that’s something that you still kind of feel about in general, like medicine, you know, the the idea of trusting the medical establishment. How do you feel about that?
Avivah Werner 38:06
I feel this might not be the answer you’re thinking of, but I feel it kind of ties into what I was talking about before, which is it’s not them. It looks like it’s them and I can blame them but this is where I was meant to be in this situation. And so I don’t want to blame myself and I don’t want to blame them. I want to say we were all just doing the best we could. Having said that, I’m very proactive, I have been for many years researching alternative health which is also why I was so hard on myself like you know, this, you know this. I expected myself to know a lot of things. I expect myself to be, in a way that’s not possible. You know, when my baby was born, I think within two days they switched me to a ward where they had Wi Fi and I had my husband bring me a laptop. I spent hours for the first year he was born. I was deep in biomedical research understanding the biochemistry of Down syndrome and how that affects every different pathway in the body. So, what do you do with that? I mean, there are things you do with that. But, I like to understand certain things, that means you’re on the cutting edge that the doctors don’t yet know that you know because I can spend all these many hours on specialized knowledge that a typical pediatrician wouldn’t be reading that. And that has happened, that has definitely happened. I’m very careful that I’m very appreciative of our medical professionals and I’m very respectful of them. And I don’t feel it makes them less for me to know that there are things that I know. And there things that they know, we’re a team and we work together. I’m very careful not to step on their toes. Because it would be kind of hard for them not to be important, right? If I came along with like a chip on my shoulder, like, I’ve been researching for hours, you know, for like hundreds of hours and I know all about this and you don’t and that’s not helpful. It’s totally not helpful. So, I try to do the best that I can and I try to work with my care providers as I best can. And I try to be forgiving of all of us that we are where we are because they’re going back to the God part. And that is so big for me when I get frustrated about how can it be and why can it be? Why didn’t they do something different? Why didn’t I do something different? Just take a deep breath and stop. It’s okay. It’s a process. It’s not bad. We adjust. You could say it’s bad. What do you mean, ‘My child, he probably should have had hearing aids three years ago. And when I see those little kids, my almost three year old is in a class and there’s some other kids with down syndrome there and I see them walking around with hearing aids at the age of four. And I think that should have been my son. You know, I think like three and a half years ago when I think of three and a half years of not hearing properly, and struggling to speak. And I just have to say, and I do, I say that it’s really okay. It took me a few months to get to that point. I had a lot of self blame, but fortunately, that process was so long to get his hearing aids that I had a lot of time to just say it’s okay, it’s okay. It’s okay. Okay.
Lilach Saperstein 41:01
So, I think I found your answer, you did answer me in the end. I think for what the advice is for professionals, which is my biggest message from this entire project of the all about audiology podcast, which is to listen to parents, you know, from the professional side. The parent is the expert on their child, they are the one who was there the minute they were born, or as soon as they receive them into their home, right, they are the ones 24/7, in the middle of the night, on the weekends and all the time and you, you know, speech therapist who has three hours a week, that’s a very intensive and important three hours a week where a lot can get done. That’s three hours out of a whole week where, you know, the parents are getting all the rest of those hours. And also audiologists who where we are doing diagnostic testing, and we need to very quickly assess if this child’s going to participate in our testing, busting out the stickers and the bubbles and everything to try and get a rapport in 14 seconds. Like, listen, listen, listen to what parents say, how they’re experiencing everything.
Avivah Werner 42:08
I actually do have a little something to add to that summed up. And that is, I would say, make the time to develop a rapport with a child. It’s really almost impossible for a child to want to work with you. Like I was saying about parenting, everything is so much easier when there’s a relationship and then your children want to listen to you. I’ve been in so many assessment situations with my son, where the demand for him to do something. He didn’t know what was being expected. He didn’t know who the person was and why they were asking it. And many times he has not shown what he really knows because he just kind of shuts down or gets resistant. And I feel that taking the time to look the child in the eye, just smile. ‘Hi, what’s your name?’ Introduce yourself. I’m Aviva. And this is what we’re going to do today and really build that relationship. Take the time for rapport. People sometimes feel, ‘but we don’t have time for rapport, we’ve got to get this done. But everything goes faster. You don’t not have time for report. Because when you skip that step, you spend all your time on their behavior and trying to coax the child and that’s not fun or productive for anybody.
Lilach Saperstein 43:21
One of the tests that we do is tymponometry where we have a little earpiece that goes in the ear, and the child needs to be still for two and a half seconds. That’s how long it takes in each year, and it can take two and a half seconds, or it can take four minutes, seven minutes, 10 minutes, seven times that we’re trying it. And it’s so so clear that the whole dynamic between the tester, the parent and the child; If that’s imbalanced, then the child, like you said, feels safe. They’ll think, I don’t know who this lady is, but I’m in my mother’s arms and she’s hugging me. She’s holding my arms but gently, you know. That’s a totally different kid than someone who just takes a really big grip on their kid and then the audiologist tries to shove something in their ear and, you’re not going to get a good result. You have to keep trying and keep trying. And meanwhile, the kid is kicking and screaming.
Avivah Werner 44:15
I have a non-audiology related example. But it was a pretty powerful example of this idea. When I once had to take my son who was probably six at the time, almost six, something had gotten in his eye and my pediatrician said to take him to the emergency room because there were no eye doctors for pediatrics available. And we got there at the end of someone who clearly had no patience, no tolerance, and looked at him with disgust. And they had four adults holding him down to flush out his eyes with saline, and it was pretty horrible. It was like a second to take this little strip and touch it to his eyes or something. He wouldn’t let her do it. We were there for hours and finally I said when she walked out of the room, there was a very pleasant ophthalmologist. I said, ‘Would you be able to do this?’ He right away came over looked at the eye and said, ‘Hi, buddy. How you doing? He did it. One second later it was done. We were there for hours with this person who I felt she created this power struggle. He felt she didn’t like him. Now, would she say she didn’t like him, I don’t know. She was tired. She was stressed. She was tense. It scould have had nothing to do with him. But he was feeling unsafe with that person and disconnected. She wanted to do uncomfortable things that scared him. And he wanted no part of it and yet doing the same thing with someone he met two minutes before and it was finished. So it’s not the time that it takes. It’s just having the relationship that really makes that difference.
Lilach Saperstein 45:43
Yeah. And her parents, if there’s someone that doesn’t make you feel comfortable, you do not need to go back to them. There are other hospitals, there are other audiologists, there are other doctors. We didn’t get into this. You know if our professionals don’t get into helping professions to help, then what are we doing?
Avivah Werner 46:03
Where, if they lose it, they got into health and they got worn down by the day to day demands and person after person and like we said, you know, in the beginning, we start our day and we’re not always bringing our best. It’s the best we can do but it doesn’t look like our best because we’re tired or grumpy from financial troubles or interpersonal things and there are people too, and sometimes they lose sight of what they’re really there for.
Lilach Saperstein 46:27
Aviva, thank you so much for coming on to the all about audiology podcast. If people would like to learn more about you or your work, where can they find you?
Avivah Werner 46:35
You can find me online at avivahwerner.com. I’ve been blogging. I have about 2000 articles in the archive. I have tons of topics I’ve written about. And I love hearing from my blog readers if people want to connect with me privately if they’re feeling challenged. I have a free consultation that I offer an initial consultation, no obligation. No strings attached, it’s just my way of helping people. And if people feel they want to follow that up later on great, if not, that’s really fine. So they can find that information on my website as well.
Lilach Saperstein 47:10
Thank you so much. Pleasure to meet you. And we wish you all the best for all of your children.
Avivah Werner 47:17
Thank you very much such a pleasure to speak to you.
Lilach Saperstein 47:20
That interview was so incredible and meant so much to me. Because, as you guys know, if you’ve been following the podcast, what I do, what my passion is, it’s leading parents through this hearing loss journey. It’s something that I believe is missing in a lot of cases where the audiologist has a lot to do. The audiologist has to do all the testing and getting children involved with learning how to throw the block in the bucket or the lights, you know, and two audiologists working together even to get reliable results from young children. And then if there’s fitting appointments, all the things that go into setting the hearing aid programming and teaching you how to do the mold and all the things that you actually need to know in the practical sense with cochlear implants, lots of mapping appointments, and making sure all the different parts and components are working. So there’s just a lot going on in the clinical appointment. And I believe that audiologists have this other role and many times, we want to serve our patients and we want to help you but there’s just not enough time within the context of the appointments. So that’s why I offer informational and educational counseling for parents in a virtual setting, online, one on one or in a group. And it’s something that I truly, truly believe in, because it also incorporates the parents’ experience of what’s been going on, and acceptance of the diagnosis that you know, things like this that come in a circle. It isn’t just stages that you go, you know through acceptance into denial and anger and bargaining and all the things that happen when you’re faced with a difficulty not only grieving in the sense of mourning when there’s a death, but also when there’s a change in the understanding and the expectation of what your life is going to be like as a parent, or who your child is. So, when there’s all of that happening, there’s space and room to get support. To learn more about that, visit allaboutaudiology.com/hope, and you can get all the details on the service over there. Of course, you can always DM me on Instagram @allaboutaudiologypodcast and come join the Facebook group, All About Audiology. I’m so glad you’re here and thank you to Avivah for a wonderful interview. I can’t wait to hear what you thought of this episode. So definitely send me a note, email me through the contact link on the website. Instagram or Facebook, I’m here for you guys and I can’t wait to hear your thoughts for our upcoming All About You episode.