Ubuntu – Hearing, Language, Communication, Connection

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Bianka: Okay. Hi there, and welcome to Ubuntu, Hearing, Communication, Language, and Connection.The podcast where we explore the power of connection, shared experiences, and overcoming challenges related to hearing loss. I’m Bianka, a mom navigating life with my son, Oliver or Oli, who uses bilateral cochlear implants and the founder of Olipop Toyshop, where I create tools and resources for listening and language development.

Karen: And I’m Karen McCluvr-Lux. I’m an audiologist and LSLS Certified Auditory Verbal Therapist and co-founder of Thrive Together, a private practice in Toronto, Canada. Where I work with individuals of all ages with hearing loss and their families. So I bring Both professional expertise and personal experience as someone who uses a cochlear implant and hearing aid. We’re so glad you’re here.

Bianka: This is a space for honest conversations where we share insights, stories, and our journeys with hearing, communication, language, and connection.

Karen: But we’re not here to offer expert advice or um, tell you what to do. Instead, we’re sharing our experiences. Our challenges, our joys, and the many ways that we navigate the world.

Bianka: So whether you’re a parent, a professional, someone with hearing loss, or know someone with hearing loss, or just curious about communication and connection, you’re welcome here.

Karen: Pull up a chair and join us because I am because we are Welcome to Ubuntu, Hearing, Language, Communication, and Connection.

Bianka: I’m Bianka, and I’m here with my co-host Karen, and we’re so excited to launch this podcast on World Hearing Day. What a better time to start a conversation about hearing language and connection. Hi, Karen.

Karen: Hi, hi, Bianka. It’s so good to be with you today. So, so exciting. Very much so. Thank you.

Bianka: It’s, it feels like it’s been a long time. Going to kind of get this to actually come together, hey?

Karen: Oh, I know, but we, we met. Um, it almost seems like, ah, yes. Well, it seemed like yesterday for me, but it was about a year ago almost and no, quite no.

Bianka: May is a year ago.

Karen: Oh! Is it? That’s great. So we met at a conference and in South Africa in Johannesburg, Joburg? Yeah, and I was invited to, to do, um, a pre-conference You know, a day of training for speech-language pathologists and auditory-verbal practitioners, teachers of the deaf, and audiologists. Anybody else who serves families with hearing loss and it was so exciting. I was, it was so nice to meet everybody in, in South Africa. To meet my friends in South Africa because we’re all friends around the world and we’re all working towards the same goal which is helping our little kids who just have hearing loss or deaf or hard of hearing Learning to, to, to communicate to, and, and in my case I was talking about helping children learn to listen with their hearing technology and learn to Develop spoken language through listening and to help and guide their parents who are their primary All enduring most important teachers in life and what a privilege it was to be there. With my friends who are the parents and the professionals who are at the shop. Not y’all, but you! That’s how we met here.

Bianka: I was, I was a little bit starstruck because as, as a parent. Who knew all about auditory verbal therapy and to see the name, your name on a book that I was busy reading about that and now here you are in front of me. And yet so down to earth and just willing to share so much information with us. It was quite an incredible experience. And within your presentation, I’m sure you remember this, but you had actually mentioned how much you love this idea of Ubuntu that we use here in South Africa and Yeah, this is kind of where the, the podcast came from. You know, this idea of Ubuntu is that we, we cannot do anything on our own. We have to be, we have a community that helps us through everything that we want to do. And. Why I think this is such a perfect name for what we are wanting to accomplish here and be able to share with everyone, um, what our journeys have been like and then I think By virtue of that, others will share their journey as well.

Karen: Yeah, yeah, well, or our journey and who we are because of everyone around us. You know, um, it, it, it just, it’s impossible, a lot of, it’s impossible to describe how much The world around us, the people who come into our lives, really flavor and impact and make our journey the rich one that it is. And so that’s why I love this. This, this name too, Bianka. So thank you so much for having me right there. It’s such a privilege. It’s such a pleasure. It doesn’t feel like you’re with me. It feels like we’re doing this together.

Bianka: The true, in a true Ubuntu spirit. That’s right, that’s right, that’s right.

Karen: So, tell me about you. I mean, you told me a lot about you at the conference, but I just want to hear your story. How do this happen?

Bianka: Well, I suppose my, our, my experience with hearing loss has been so different to your experience in that it’s been not me who’s directly affected, but of course my son. So yeah, when it was how many years now in 2019 I gave birth to my son and we did not have a newborn hearing screening done because they are not mandated in South Africa. And yeah, fast forward five weeks, we were sitting in a, in the lounge and the door slammed. And the door slammed shut and he didn’t startle, he was fast asleep and we all got such a big frat. And everyone said, sorry. (Bianka’s printer making noise in the background)

Karen: You don’t even hear that, Bianca. Oh, you don’t? I’m sorry. It’s, it’s like the computer just got a mind of its own and it’s just.

Karen: Hey, well, you know what? This is, this is good that this is happening because I’m telling you, maybe this is a message for Zoom. To really bring back this musician’s feature because I find that the noise cancellation feature in the background for Zoom is really affecting Impacting negatively my therapy sessions because I can’t play background noise. I can’t get music with an overlay. Um, a background noise or I can’t get, um, any, uh, sound effects in the background to help people learn to understand speech in The presence of background noise that we encounter every single day. And that’s music and Zoom cuts it off. They cut it off and it doesn’t matter how Clever I can be, I’m not always clever, but you know, I get all these other people in there that are trying to reduce, trying to turn off this noise suppression feature in, in Zoom. That I can’t do my therapy as effectively as I would like to anymore.

Bianka: So, hmm. Quite synchronistic then, right? That it has to happen on our first recording. But that’s something that… So, I mean, beautiful in the sense, and this is exactly what the podcast is about. These are things that we take for granted as, as hearing people, as a hearing mom, I would have never thought about something like that. Um, and here it is. It’s, it’s a beautiful example of that. So, with, I suppose like the door slamming, it was, you get a fight and you move on, but if you don’t get a fight, there’s something wrong. It’s everyone in the room jumps. And as I said, my son didn’t jump. And yeah, fast forward to all of that, we ended up taking him for a An ABR and found out that he had some bilateral severe to profound hearing loss just before he was three months old. And it, it’s a, how do I put it? The news is devastating because you, because of your perspective in that moment, because I didn’t know anyone else with any sort of hearing loss. So I did, and everything I did know was a very, um, Biased, I suppose, is that the right way to put it? Because all I knew was sign language. You know, if somebody is deaf, that’s the only way that they can communicate. I had no idea there was an entire world beyond sign language. And so, yeah.

Karen: Well, that’s um, it’s a coup to the sign language community that they are getting their communication approach out there to the general public. So that the general public understands that they’re having much greater exposure in the movie industry, for sure. But where we don’t have, um, enough representation is what about those kids? What about those adults who have grown up learning to listen and talk with hearing technology? It doesn’t mean that, you know, one is better than the other. It’s just another way of being with With, with the hearing loss and so, um, I’m really proud of the, the Signing Deaf community for that, but it’s unfortunate that the listening and spoken language community hasn’t Really done a, a good a job as we could have done, you know, to Let you know as a new mom, well, you know, there’s a, there’s, there’s lots of things we can do, you know? So that must have been hard for you, huh? Or what was it like for you?

Bianka: So it’s gonna sound a little bit funny, but it was actually a bit of a relief because I had a mother’s intuition, if you want to call it that, that something was wrong with this hearing. You know, an audiologist did show up in the hospital to do a test, but we were already out the door. We had him in a car seat. We were ready to go. It was quite a dramatic experience the whole birth and I was just like, we’re, we need to go home. I don’t want to do one more test. Um, and The, so for me, I thought, okay, I’m not going crazy. There really is something wrong. For my husband, it was absolutely devastating. Um, And to navigate that as first-time parents is, is, is huge. Um, and I think that the As you say, I remember, I remember the audiologist turning around cause we, and he said, I’m really sorry, but it appears the loss is profound. And in my head going, I’ve got four years of a human physiology degree. What does profound mean? I don’t quite understand what profound means. And, and like looking to my husband and. And the language, you know, it was, you’re so overwhelmed in that moment by the look on his face. It’s not, it’s not good, but what does profound mean? Um, and definitely asked him that afterwards, but. How much went in after that? I’m not really sure. It’s almost like a room spinning kind of like WhatsApp. Um, so I think. I think that it was, it was scary if I could tell myself what I know now five years ago or six, almost six years ago. It’s, it’s such an incredible journey and yes, it has many ups and downs, but look at where my son is today. So we were incredibly lucky because of COVID and I know not a lot of people can say that because COVID was pretty um, not so nice for most people. Because of COVID, our cochlear implant team decided to push up all paediatric implantations. So at three months, he was aided with hearing aids. At the day after he turned six months old, he went for his sedated ABR, his MRI CAT scan. And six months and fifteen days old and he was being implanted bilaterally with cochlear implants. So, yeah, in the middle of COVID, which was just incredible, and he was switched on at seven months old, yeah. So he today at five years old doesn’t, you know, doesn’t really know life without his cochlear implants and

Karen: Can you tell me his ages again? Yes, I want to emphasize that. Tell me when he was implanted.

Bianka: So diagnosis was severe to profound hearing loss. Was it just before three months immediately aided with, with hearing aids. He was then implanted at six months and he was then activated or switched on at seven months.

Karen: Okay, this is… From a pro-professional act perspective, okay, this is outstanding um, because the early hearing Detections of hearing loss and intervention. That is our goal. We have met that goal for you in South Africa. Where universal newborn hand screening is not mandated as you said. Yeah. And yet you were able to get those. Ages at the most optimal position that we could get, which is earlier the younger the better. Yeah. That’s amazing. Yeah. That’s amazing.

Bianka: And, and we started AVT at three months where you don’t think you can do speech therapy from three months of age, but we started our AVT Um, appointments when he, the, the day after he was aided with hearing aids.

Karen: So the, one of the greatest things, there are two things that you mentioned that I would like to ask you more questions about if I go beyond that. Um. One of which is, how did you do it? We, we professionals, we choose this profession. We know exactly what we want, what we need to do. Maybe not exactly, but we really try our best to take the research and figure out what can we do to get the best outcomes we can for whatever the parents choose, whatever their desired outcomes are. Now I’m assuming your desired outcome was for your child to learn to listen and talk with whatever hearing technology that could be given to him. So that was number one. Um, now, you talked about This feeling that you got when this audiologist asked you, he told you, he says, I’m sorry, but this is a profound hearing loss and you didn’t know and what profound meant.

So there was, can you talk, like that would, you mentioned that it was very, you couldn’t process very much after that. Yes. The reality is, you, you did process very quickly. Um, because, you know, we professionals, we can move fast. But we often forget that parents are being forced to move fast in this world of, this new world of uncertainty for you. Can you address more of how you felt? Okay, we know how you felt during the, after the diagnosis was given. Um, how did you deal with that moving forward?

Bianka: So I think I do remember the very next sentence, maybe two sentences afterwards, the audiologist saying, you know, forty years ago, this would, this would mean you, your only option would be sign language. Okay. And I remember that sort of sticking there. So you’re trying to put all these pieces together in your head going, okay, so that means we have options for him to be able to hear one day. You know, that was sort of trying to go to, in my head, make sense of that. I think that being first-time parents in kind of the situation that we were in, so a slight bit of context to our story was that we had decided to emigrate to the U.S. And so we, Oli was born in November 2019 and we had decided we wanted to leave in March. So we already Actually sold up our house. We had given notice. I closed my business. So there was this added stress of, oh my word. And then COVID hits as well. Okay. So there’s quite a lot going on. And I think. The big, I hate to use this word because I don’t, I, but you, all you wanted to do was how can I make my son’s life easier? Your initial feeling is just, is it gonna be so difficult because, you know, I’m gonna be honest, I feel like life is already quite challenging. And now we’ve added another layer to it. So what can we do in order to make his life just a little bit easier? And again, as you said, there’s nothing wrong with learning sign language. It’s not that. But in order to also be a part of I want to say mainstream society. It does make it easier if you are able to communicate just like them. And so there was definitely a lot of, of, of that. And I know when I have new parents sort of Referred to me to chat about our journey and they always ask, how did you make the decision? How did you make the decision to get cochlear implants? And my husband and I often talk about this and say, There wasn’t really a decision to make. It was like, well, if we can do something for him, this is what we’re going to do. Um, and I know a lot of people, again, would may disagree with that, but that is there. It was almost, it just flowed. The fact that it happened so quickly, the fact that it, we didn’t have to even fight. That was one part of our journey where there was no advocating. It just happened. Um, So there was another mommy, Oli and her daughter had the same due date. And she was born two weeks early and Oli came two weeks late and she was also diagnosed with profound hearing loss bilaterally. And the two of us did, I will say, she contacted somebody at the Tracy Center in the U.S. And I contacted somebody at, um, OHSU and Tucker Maxon and we just chatted to them and they were also, they said exactly what you just said, the earlier the better. Um, and I think We didn’t even, as I said, didn’t have to advocate that to our team. Our team then came back and said, we’ve made this decision. So the feeling of relief of being told, actually, we’ve decided we’re going to do this. We’re going to push it all up and we’re going to do the cochlear implants. And we were like, this is great. Textbook wise, this is great. And then you put down the phone and you’re like, wait, are we doing the right thing? If it’s just happened, so it’s happened so quickly, even his, his sedated ABR CAT scan and MRI. I remember sitting in the ward waiting for him to wake up and I figured it would be a day or two before we heard from the surgeon and she phoned. Immediately I pick up the phone and she says, everything looks great, his anatomy looks great, we’ve booked it for two weeks from now. And I was like, two weeks from now? That’s… And then of course, it’s the idea of your child going and having surgery. And then that’s when you start to, but that’s the fear aspect of it that sort of throw kicks in. Is this the right idea? Is he not too young to put him under such a long surgery? Yeah. But… I think, I think those around us would have also said we felt everything as we went through it. There were lots of tears of going back and forth, but. And it’s easier, hindsight is so much easier to say it was the best decision that we could have ever made for him. There’s a lot of feelings involved and you have to ride those out. Otherwise, I think you just end up suppressing them, but you, you do, you feel a lot through those. And you still do. And I know that we’ll get into other episodes where we get to talk about how that plays out later on down the journey. But the feelings are much bigger in the beginning of the journey, I feel.

Karen: Oh, for sure, oh, for sure. I mean, I can, I can, um, I know this because as from my mom’s experience, it was big, big feelings for her. And um, even now that I am, I’m a seventies baby, okay? So we can all figure out how old I am. So, and back then, so now we are fast forward to here and I can still tell you my mom still worries. And I think as a mother, you know, now I know I still worry. And so I don’t think we ever stop worrying. I tell you this. I’m learning magic. But there are some things that I’m learning as a professional. So this podcast is really a learning experience for me as a professional and then And I want everybody to know this because even though I’ve worked in this profession since 1997, I don’t know it all and I’m constantly trying to figure out What we can do to be better at what we do. And you know where I get the best advice from? Who I get the best advice from? Parents. Parents. And, and when I’m working with adults, I get the best advice from them. And so what I learned from you From what you’ve talked about so far is, you know, the professional youth, he said, at the time of diagnosis, And believe me, professionals all around the world, we’re trying, we know, we know we use the jargon. What’s the jargon? The professional jargon. Because this is what we learned and it becomes automatic and it just comes out of our mouth. We can’t help it. And we’re just like, ah. And if we do use the jargon, and this is my theory, if we use the jargon and the parent is going, what the heck is this person talking about? Uh, it’s, it’s because we are We are, um, we’re nervous, we’re scared. We don’t, we’re nervous and we’re scared because we don’t want to scare you away. You know, and we, we just do what’s most comfortable in that moment, I think. And sometimes what’s most comfortable for us as professionals is the language that we had to learn. In order to get the good grades on the exam. Um, and so we all say, and I, there is no perfect professional out there. There isn’t. We all say things that I’m, ooh, That could have come out better, or we may think it was the great way of saying it, but we need to know there are better ways of saying that. So one thing is profound. What is that language? What does that? And there are a lot of professionals who have to learn how to use living room language, language that parents can understand. So, what does a profound hearing loss mean? Well, we know that it means, and you know now, that that means that without hearing technology, all sounds of speech… Are not accessible to the child at all. What do I mean by accessible? They can’t hear it. They can’t. Even no matter how hard they listen and try, try, try, try, it’s not coming into the brain. And, um, so, and then I think, okay, so how do we describe that? That’s how I would, would have described it. Recall that. Um, a profound hearing loss. It is a great, great degree of hearing loss. And, um, and then I immediately go into, but… There are some things we can do with hearing technology to give this person The ability to hear spoken language so that they can learn to talk if that is, if that is a desired outcome that you have. Because there are some families who want their children to learn sign language, you know, because for whatever reason that might be, um, you know, for a family from the, um, the culturally deaf community, This is, I don’t know, I don’t want to put, this is a diagnosis that, um, would Um, this is a diagnosis that they would take very differently. Yes. Um, and everybody takes it differently. Everybody is different. And sign language is, is accessible to their children because that is a language that they, that’s their native language. That’s what they feel the most comfortable with. Um, so, you know, for me, I think it’s wonderful that he said, but there are options. There are options in it. It almost, um, brings it back. It almost rescues it, you know, from, from what I’m thinking because I could hear myself saying exactly the same thing that audiologist said. And so it’s, it’s hard for us professionals, um, Really hard because we’re so afraid we’re going to scare our families off. That’s it, you know, and we don’t want to do that. But we do sometimes. And so it’s really nice to hear from you how you felt at that moment. How would you have told yourself about You talked about what the opportunities are, but if you were to take that diagnosis that that audiologist gave you, and how would you have liked to have heard it?

Bianka: You know, I was thinking now while you were speaking, cause I think if you, I love that. I’ve never heard that phrase before. Um, did you call it living room language?

Karen: Living room language, living room language. There’s professional jargon and living room language.

Bianka: I’ve never heard that before. And I think what made, I was sitting here thinking. Even if he, because I remember the motion, even if he turned around in his chair and said, I’m really sorry, it appears he can’t hear. At all, you know, or something like that. What, what would, I would, I think the reaction would have been the same. Um, which sounds silly and this was actually something that came up when, when you were here in Joburg. The different ways that different parents take information. And I think for me, I need to process. So I would have, I would have loved, to be real honest, a piece of paper. I would have loved a piece of paper that explained to me, explained to me what is profound. And we did get that about three days later, we got the speech banana and that whole thing. But I think I needed to go home with that even if it didn’t make any sense that it was just a security blanket in that moment because The way our appointment had worked, it was very late at night. We had load shedding where we have rolling blackouts here in South Africa. So the audiologist actually phoned to cancel our appointment. And we said, no, you can’t cancel it. We’ve been waiting weeks for it. And so, so as after hours gave us the diagnosis or that the profound there are options, please come back tomorrow morning so we can just retest. So we came back first thing the next morning and did that for two days. And it was on that third day that we then sat down and actually looked at everything. And let’s be honest, what did I do? I went home and googled. Okay, which, which wasn’t her? So we all do. I do it. I google all the time. So, and having a six-month-old baby who, breastfeeding and they say sleep when the baby sleeps and I’m just sitting on the phone just trying to do as much research as possible. But you’re in such a state of fight or flight, if you will, that you’re actually not comprehending anything you’re reading. And so A concise one-page document would have been quite amazing, I think, just to take home and say, these are the different levels. It doesn’t matter where it is, there are options and these are the different options that you would be given. Um, so yeah, in an ideal way.

Karen: Yeah, I think that’s really good and I think over the next All the podcasts that we’re gonna do, there’s no right answer. There’s no right answer. We just have to get through it with the information that is given to us because we can’t choose it. We just have to let it, let the language come in. And I guess I’m quoting Mel Robbins. I love this woman. We, we can’t control what people say to us, but we can control how we react to it. And I think that is something that I hope we can share in our Future podcast because that’s what it came to with my own mother back in, in, in the 70s. Um, she Or, ah, she figured out when I was eighteen months that I might be having trouble hearing. And my hearing loss was, ah, let’s use professional language. Okay. Well, it was a mild hearing loss at 125 hertz. What does that mean? That means that I could hear an mm, mm. That’s where 125 hertz is. So if I, and I heard that almost, almost normally. Almost. Okay. Um, normally, I mean typically. Now, uh, for 250 hertz, which is ooh, I had a Moderate hearing loss. That means that I could hear it, but I had to be a little bit closer to the speaker in order to hear it well enough to make sense of it. Okay? Then when it came to ooh, um, which is a little bit of mmm, At 125 hertz, where um is located, I had what professionals call a mild feeling loss. So whenever somebody said, mm, I could turn around and look at it and find them even if I was far away. Okay, then at 250 hertz, which is where ooh is more concentrated around, I could… That was at a moderate hearing loss. That means that if I was far away, I probably would not hear it. But if I was closer to you, like snuggling up and close to you, Then I would be able to hear you making that sound, ooh. When it comes to ee, which is getting a little bit higher in frequency, that’s around 750 hertz. Um, that’s why I put E, but not really. But anyway, um, at 750 hertz, I dropped down to what we call a severe. Fear hearing loss, which means that if I was far away from you, if I am close to you, I would not hear. E, I would d, I would know you’re making a sound because E has many ingredients. You know, E has an ingredient for um, and so I would catch that ingredient, but not the higher frequency ingredient that makes E sound like E, which is where 2000 is. Where 3,000 Hertz is located, okay? Now, at a thousand Hertz, which is where ah is, Really, right there, I had a profound hearing loss, okay? What does that mean? That means I could make ah as loud as an airplane. And maybe I will be. But that’s not within our own speech. We don’t talk as loud as an airplane. So that’s what I mean by a profound hearing loss. And then we go to… Which is even higher in frequency. Make it as loud as an airplane. I can’t hear it. And then, this is interesting. I had a severe hearing loss. Which means that if you would get really, really, really, really close to me and make a pure tone sound, which usually an element, you know, have you ever shaken keys? Yes, yes. And hear that tinkling sound, there’s a little bit of that 4,000, 6,000 hertz sound in there and I could hear that if it was nice and close to me. But if it was further away, forget it. That is why so many people, when they clap their hands, I could turn to them and they would say, there’s nothing wrong with their hearing. You’re overreacting. But I was, I just was not able to hear enough of the frequencies of speech, enough of the ingredients. That make up spoken language for me to learn it like other children could. And so I was like, ooh, ooh, ooh, ooh, ooh, ooh. And I was babbling but I wasn’t making sense at all and this was that. Um, and my mother kind of figured it out when she was playing the piano. She was a pianist, she was a musician. So she noticed that whenever she played in the upper end of the keyboard, um, I wasn’t paying attention and I loved music. But whenever she played a song like Moonlight Sonata, which is on the lower end of the key, I would come running and I would Lay down on the floor by the piano and listen to it and feel the vibrations of it and watch her feet go up and down on the pedal. And she says, I began to realize that you were having some difficulty hearing and then that started Um, that was eighteen months, another two years of begging and begging the doctor to get me in for a healing test. And so this is where, um, this is where a parent’s instinct Is so, so important to me. Um, whenever a parent has an instinct and they come to me for therapy and they say something. 99.9% of the time. It’s an instinct that makes sense. Yeah. And if you can’t figure out how it makes sense, then you need to investigate it. You know what I’m saying? Just because you can’t make… Just because one professional can’t make sense of that instinct doesn’t mean that that instinct is there and is not true. Just because that instinct doesn’t make sense to you as a professional, it doesn’t mean that it’s there. You have to figure it out. And if that means talking to other professionals, please do that. Please do that because parents need to be heard and they are truly, truly the experts in their children’s Abilities and the drive to succeed. You know? And, um, so, um, anyway, fast forward to three years and eleven months, my mother, uh, went to the family doctor’s office and said, I am not leaving here. This is in the morning of that one day. She says, I am not leaving here until you make arrangements for me to go to this hospital in Toronto and have her hearing tested in the afternoon of today. And that is what happened. And they tested me twice that afternoon to find a moderate, no, a mild, profound hearing loss. That means Karen can hear some speech sounds, but she cannot hear other speech sounds. She cannot. And back then, only body aids were available. Body aids were available and they had just come out with behind the ear hearing aids and they were power, power, hearing aids. And so they fitted me with that, but they said, you’re wasting your time. Mrs. Ivey, you’re wasting your time. And she says, Uh, I don’t care what you think. Um, and you know, and she, she was told over and over and over again, your daughter is not going to learn to talk ever. And um, you are going to have to send her away to a school for her to learn sign language and to learn how to read and she won’t go beyond a grade three level of reading. And um, for my mother, you know, sign language for her was, it’s not a bad thing, it wasn’t a bad thing, but she The thing about my mother is if you tell her her child can’t do something, which they told her they made the mistake of telling her that she’ll never learn to talk, my mother will Turn the world upside down to prove you wrong. And so that’s what she did. And, uh, she, um, relied on some speech-language pathologists, um, who, one speech-language pathologist who had just recently graduated from university And she didn’t know enough about hearing loss to know. To know that it’s not gonna work, okay? Um, traditional therapy is not going to work. And then my mother found Daniel Ling, who, um, Who was very famous back in our days. He was in Montreal at the time, which is, um, a, quite a bit of a drive from Toronto. And, uh, she got a hold of him and he came, uh, down for a conference in Toronto and my mother dragged my poor speech-language pathologist with her to this conference to have a conversation. You know, a meeting with him, told him the audiogram, and he said, okay, this is how you’re gonna do this. And so I had therapy sessions for two hours a week. And two hours in the room, my mother was in the room and then a half an hour with the speech language pathologist with my mother alone to figure out what we’re going to do with Karen at home. And I remember Spending a half an hour in the waiting room playing with all the Fisher Price toys. That’s why I have so many Fisher Price toys from the 70s in my therapy room because I love And um, it was so, there was so much pushback back in my days, so much pushback. You can’t do this, you can’t do that, you can’t do this, you can’t do that. And it was all just, just let her try. If she can’t do it, then okay, but I need to see it with my eyes. That was my mother. And um, you know, and I see that spirit in every mother that comes to see me and I don’t doubt them. And it’s wonderful to see and without that spirit, without all of those professionals who Just went with my mother and just thought, hey, let’s try. Just let’s give it a try. And, uh, that’s why I’m here and that’s Ubuntu. You know? Yeah. But that’s what it is. I’m here because of so many people and You know, to think of them would make me cry and I’m not gonna do that. But, but it’s, it’s, that’s what I love so much about the parents who make a decision about what it is that they want for their child. And then they say, this is what can I do to get there? No matter what it is. And, you know, and my thing is, oh, you want your child to learn to use ASL? I’m going to find you the very best I can do. You know, it’s not going to be me, but um, you know, but if you ever want to think about helping your child learn to listen and talk um, to the best of their ability I’m your girl, you know? It’s, I just want to do what you want to do, you know? And, and I, I just think there’s a lot of, um, We need to respect the parents’ wants and wishes, and we need to help them get the very best. And, and I’m so glad, Bianka, that you had that opportunity for Oli. Little Oli, Oli, Oli, Oli pop, Oli pop.

Bianka: No, and I, I agree with you and I think exactly how you speak is what you are as a therapist. That’s exactly what we really did experience as well, which I think is quite incredible that The, I want to say the, the, the field is quite small too. So the, the amount of work and the amount of, um, love that is shown from, because let’s be honest. I mean, I, your speech therapist becomes. Your, and that’s traditional speech therapy, but our LSL was really, she, we spoke to her every single day in those first two years, I almost want to say, because it was. You walk the journey with us. You know, it’s exactly that Ubuntu thing. It’s not just, here are the tools, let’s just go home and do this. Through the ups and downs, the highs and lows, these people are in your life on the journey with you. And I think that’s the most incredible part. And you’re, it is amazing. You know, your mom, your mom was that person who just like, I feel like I was to a certain extent who was like, we will get the best. If we’re told we need to do this, we’ll do this. We were told to read ten books a day. So we read ten books a day. People thought we were mad, but. We need to read ten books a day, you know, in order to.

Karen: Yeah, and, and there are some parents that say, I can’t do that. And then you go, well, then we’ll find a way for you to do it in another way. Whatever feels most comfortable for you and, you know, and this is something else that is really important for me, you know, just because we say this and it’s hard for the family to do, it doesn’t mean that that family is going to fail. We, it is up to us professionals to tailor any, to tailor our recommendations to the family’s life. Their daily life because if we don’t, um, that’s when it’s gonna get really rough and, and, um, so that’s why I, I need, that’s why And I say I need, it’s not just me. It’s so many therapists, so many professionals around the world. We need the parents. The parents, no matter where you are in this stage, we, we need you because we truly, truly, um, you guys know the best. You really, really do. And we have so much to learn from you and we feel so privileged to be a part of your journey and, and you were saying something about professionals. Being a part of our lives. Um, well, when it comes to children who Uh, deaf and hard of hearing, children who have hearing loss, whatever way the listener describes it. Um, yeah. You, it’s a lifelong thing. It’s not just for the first six years of life and uh, it, it, I, I think sometimes professionals don’t understand the, the The, the depth, the texture, the The, the, the, the sustainability of gratitude and love parents have for these professionals because The needs of the parents change over the years and I think for kids with hearing loss, um, we don’t know any differently. We just had a great life. Um, I did. A youth, um, I did a speaker’s session for a group of youth in the summer, last summer, and it was amazing, and I asked them, I said, do you What, what do you think it took for your parents and for professionals to get you to where you are today? They had no clue. They had absolutely no clue. They just said I wore hearing technology and I know I had some therapy but You know, they didn’t understand that. And I love that on the one hand because for them life was just being lived and in a joyful manner or maybe in a painful manner. Um, that’s life for everybody, right? But they had no clue, but the parents remember and the, the profession, the parents never forget. They never ever forget and they do consider professionals a part of their family. I, because I learned I chose this profession as my way of making a living. Um, of living my life and enjoying it. I was very fortunate to have parents who said, Um, your vocation should feel like a vacation too. You know, you should love it. And, oh my goodness, I love what I do. And, um, now that I understand If I were to have a three-year and 11-month-old child come into my therapy room, a little Karen, mini Karen, and my mama, um, I would know what it’s gonna have to take. To get to where I am today. And all the professionals are like my family. Every professional that was in my life, I talk to them still on the phone. And it’s like, thank you, thank you, thank you. Thank you for giving me the opportunity because if I wouldn’t have had the opportunity, I wouldn’t have been able to experience really precious moments in my life like, um, When hearing my daughter as she was being born, as I was giving birth to her, um, being very quiet, Me getting a little, what’s going on here? And that slap. Bink. And then the crying and then the relief that I get because I know what that bar means. And then I say to her, Emily, it’s okay. Mama’s here. When the doctors are ready and finished with you, You’ll come to me, don’t you worry. And she stopped crying. Yes. She stopped crying. And so that to me is my number one favorite moment in my life. And gosh, it wouldn’t have happened. It wouldn’t have happened if I wouldn’t have had Ubuntu. I think that is incredibly valid and very true. But that’s my moment, you know, and you know, you can have moments like that, but ASL, but. If you’re gonna do it in ASL, it’s a different, more just as rich, just as beautiful. It’s different, you know, and you want to be able to be fluent with your child, you know, as a person who is deaf and who uses sign language. And make those signs come out. And oh my goodness, you see those beautiful moments in the, in the breathing suite with them too. It’s just different. And just because it’s different doesn’t mean different, you know, that it doesn’t, it’s not as precious as your experiences, you know? And so this is what I hope everybody gets to enjoy out of our podcast is, is those conversations and those different, those, you know, can come out and, and, um. And you’re gonna have lots of those moments, too.

Bianka: Yeah, Karen. Brought me to tears, Karen. I cried first.

Karen: I don’t need to, I don’t mean to, but it’s, it’s, it’s the way it is. It’s just the way it is, you know, and You know, I have a lot of gratitude to my parents and to the professionals who worked with me and I just want to see and I just want to be One of, one of the world of amazing professionals that we have, every single one of them. Even those ones who challenge us, um, they teach us. They teach us and they give us that moment, you know, and um, Yeah, and I love your boys. That beautiful blonde.

Bianka: Thank you.

Karen: The kind of blonde here I wish I could have naturally, but I don’t.

Bianka: Okay. And I think Karen to sort of just end off that Ubuntu aspect of it, it’s exactly that. It’s It’s those moments and I feel in our journey, we’ve had so many of them where the first time, you know, the first time he said mama, the first time I truly believe he heard me say I love you and understood what I was saying to him. The, you know, the first time I realized he really gets theory of mind and I don’t need to worry so much about him. Um, and that’s a whole different conversation we can have at one point. But being able to express himself, you know, to tell me I feel frustrated, mom, um, and And the amazingness of that you are, I don’t think as a, as a parent to a child using cochlear implants, Little sounds. It’s just amazing. You are dumbfounded all the time. A very silly example and it was recently. We lie down every night and then he brushes his teeth and then I brush his teeth just to make sure we get everything. And he, his nails were a little bit longer than usual. And as he moved his fingers across the pillow, it made that, um, it made a sound. And he was like, mom, what was that? And I said, what was what? And he said, and he did it again. And he was like, that’s. And it’s strange since we lie like that every night, but he’d never heard that sound and how appreciative and excited he was about such a silly sound. You know, we can talk for twelve hours a day, but this little silly sound that brought so much Joy to his face, um, to hear that and to understand where it came from. It was, yeah, it was amazing and I think As a parent, I, the Ubuntu aspect of this goes even further than even our therapist. I’m incredibly, incredibly grateful for this incredible technology that has given my child this The chance to hear things, maybe not like I do, but to hear things because we don’t know how he hears them, but in his way and to be able to share that. And I think that’s, that’s just incredible. Um, yeah. And as you say, had we gone the sign language only would it have been that way. And it’s so funny. We, we, I wanted to sign with my child before I knew that Oli had a hearing loss. And because I had learned in college how great it was for your child to learn how to do that. Exactly. So we started. Right away and, and he, we still joke very often because the sign that he did, he started around for five months, was this. And I had obviously was speaking all the time. And so I would always say, do you want the other one? Meaning do you want me to switch over to the other breast so you could have more milk? So the word that went with this wasn’t milk. He used to call it the udder. So I would. No, he wouldn’t say the udder one.

Karen: And, and you know what? From, from my perspective as an auditory verbal therapist, I love sign language. And, and love it when parents use it because that gives me really important information that this baby can use has the ability to use language to communicate. Because we never know if that’s going to be affected with the diagnosis of hearing loss. You know, what else is going on because You know, communication is not just hearing, it’s cognition, it’s a theory of mind, which is being able to take other people’s perspective. You know, the best way to explain it is, you know, You know well enough to play a prank on someone. That’s what theory of mind is. You gotta have that. Ooh, gotta trick them. And, um, and when you see that and a baby is five months of age who’s able to use sign language, I’m like, oh, yeah, okay, I’m all ready for this. Yeah, gonna be. You know, this is going to be a nice smooth journey for a therapist and for a parent. Exciting one too, so.

Bianka: Absolutely, absolutely. Well, I think as far as the way forward for our podcast, I think I’m really excited about everything that we get to share from an Ubuntu point of view and just You’re, we’ve only touched on like a tiny bit of each one of our journeys and we haven’t even got, yeah, we get to dissect the rest of it and chat live.

Karen: We will, and, and, and we’ll get to it, right, Bianca? We have lots of time to get to it, and we’ll get to it with you as part of our conversation as well, so.

Bianka: So thank you very much for joining us today as we, yeah, as we start our own journey, if I can put it that way. Diving into hearing language, communication and connection, whatever that may mean. And we hope to see you at the next one when we get to really dive in a little bit deeper into our personal journeys. So that’s it for today’s episode of Ubuntu, hearing, communication, language, and connection. Thanks for spending time with us. We hope our conversation sparked new ideas and gave you some comfort or simply made you feel connected. We’d love to hear your story. Reach out, share your experiences, and keep the conversation going. Remember, we’re just sharing our perspective and our respective journeys. There’s no right or wrong path. Only the one that’s right for you.

Until next time, take care and stay curious.