Disclaimer: This transcript was generated using AI and may contain errors or inaccuracies. While we strive for accuracy, automated transcription may not fully capture nuances, context, or speaker intent. For the most reliable version, please refer to the original audio.

Bianka: Hi there, and welcome to Ubuntu, Hearing, Communication, Language, and Connection. The podcast where we explore the power of connection, shared experience, 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 I’m also the founder of Olipop Toy Shop, where I create tools and resources for listening and language development.

Karen: And I’m Karen McIver-Lux, and 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. I bring both professional expertise and personal experience as a cochlear implant and hearing aid user myself.

Bianka: We’re so excited to have you here. The space is for honest conversation where we share insights, stories, and our journeys with hearing communication and connection.

Karen: We’re not here to offer expert advice or tell you how to do things. Instead, we’re sharing our experiences, our challenges, joys, and the many ways we navigate the world.

Bianka: So whether you’re a parent, a professional, someone with hearing loss, or perhaps knows someone with hearing loss, or just curious, you’re welcome here.

Karen: So pull up a chair and join us because I am, because we are.

Karen: Hi, you look great today. How are you doing?

Bianka: Thank you. I’m well, thanks. How are you?

Karen: I’m, I’m so excited to talk about what we’re going to be talking about today, which is the activation. Um, and he was just looking at that video that you sent me of Oli when he heard sound for the first time with his implant. It was, wow. You know what? What a transformation.

Bianka: Absolutely.

Karen: What was going through your mind? Well, you know, Karen, I think it’s kind of a, it was a lot, but also not a lot, if I could put it that way. I think that we were prepped so well not to have any expectation whatsoever to kind of work and see what happens and then when the audiologist knocked, knocked, knocked, and I mean, you saw the video, his head, he didn’t even hesitate. It was just a split second and he, or less than a split second, and he was exactly localizing that sound. Um, And you heard us all in the video, we were just, we were, we couldn’t believe that. I think you don’t realize What your child couldn’t hear because he’s my first child and only child and didn’t have any reference for hearing something and having a reaction. And here a sound happens and he just, he immediately turned to it. So it was… There were lots of tears, um, and I was thinking about the emotion that came up and how it was different to the hearing aid. Switch on if you will want to call it that is that when we went through the whole hearing aid thing, we had so much grief behind it all because we, we were so new to the journey. We just had a diagnosis. We had no idea what to expect. And with the, with the cochlear implant activation, there was so much hope. You, you were like, wow, all those fears that you initially had with the diagnosis and is he going to be able to hear and what’s next and In a split second, we know there’s lots of work that comes after that, but in a split second when he reacted like that, you just go, wow, this has been all the tears and has been worth it.

Karen: You know, I can’t imagine, you were talking about hope, right? You know, you have so much hope, which was the difference between getting fitted during that time that he was getting fitted with hearing technology, uh, the hearing aids. And didn’t know what to expect. You were grieving. You had fifty million emotions running through your mind. And I, I can only assume that the process of preparing for the moment of when you turn on the hearing aids The, the process for preparing for the cochlear implant was different and you did, we, we’re talking about hope, that’s a big, big difference. Can you talk more about what the family was thinking, what you were thinking, even the process, the physical process of going through that activation with your baby?

Bianka: Yeah, I think, so again, ours was slightly different because of COVID. So we had I had really wanted my mom there, you know, my mom had been through the whole process with us with all so many appointments, but unfortunately she couldn’t because the room was very small and we had Only our speech, um, therapist with us and our audiologist and then myself and my husband and of course, Oliver. Mm-hmm. Even driving there was such a big deal because we had to get a permit to drive on the road. Um, as we spoke last time, we had so many problems with getting the actual kit to South Africa. And I remember because of the, um, having to come from England and I remember at one point having this conversation with the insurance lady and getting so upset because I said to her. This taking so long to pay out and get here and all this means that my son doesn’t have access to sound because at this point we had been very well versed on the importance of getting access to sound. And now he’s gone a whole almost five weeks for since the operation to activation when it shouldn’t have been that long. So I think. I think that that hope was absolutely there, but the frustration in the process of getting us to the, to that activation was such a big deal. Um, and then we didn’t know we were going to do it because of COVID the hospital was actually closed. So then the audiologist said, well, why don’t we do it at my home? And that didn’t work out. So eventually we got the right to go to her office and our speech therapist came as well. And they, they asked us about masks. Are they going to wear masks? Are we going to wear masks? Like, you know, we were in this whole.

Karen: Yeah.

Bianka: So we, uh, there were these, those big plastic screens and then three of us didn’t wear, um, any masks. And, um, I think I remember like almost sweating a lot like because you have no idea what to expect. We, we, we were nervous but excited all at the same time. And then the worst thing again that you can do is go into Google. Okay, because you have all the different, you have like the picture perfect switch on thing that can happen and you have the no reaction whatsoever and all the big tears. And, and so I think, honestly, if I can give any advice to any parent, it’s always saying, please try not have expectations and don’t go onto Google. Don’t do what I did. Um, and I think, Because everything had flowed, I know my husband and I had said, okay, well, it’s going to be great because we had the, he was immediately a candidate. He was implanted so early. I know when they tested the electrodes in theatre, everything worked really well. So I’m sure this is going to go well, but in the back of your mind, you’re still, and there’s also that conversation that you had that. It may not work. It’s just like sitting there, but you’re clinging on to hope. I feel like that’s all I can honestly say over and over again is that that This is, this is it. This is sort of the answer that we’ve been looking for. And yes, we can deep dive into that. And there’s a whole lot of opinions about that, but we wanted our son to be able to access. Spoken language and to be able to access sound. And so this is exactly what we needed to do for him. Um, I know they prep us for the amount of work that goes in afterwards, but in that moment, nothing matters. I just, I remember him turning like that and we’ll share the video on our Instagram page as well. But I remember him turning like that and just being like this, this, everything we’ve been through has been so worth this because he has just showed us exactly. What, what he’s capable of doing and here he is five years later and he’s phenomenal. So I think it’s. Yeah, it’s a, it was a beautiful, beautiful moment and I, and I hope that sort of answers your question but I think the family was very excited and I was sort of waiting for that video as soon as we had, had done it. And I remember getting back to Hopefield where we were staying close to my mom and they came over and they were all just so excited. At that point, you’re so nervous because you’re like, well, we can’t be too loud, but you know that you can’t, but you can. So, you know, everyone’s trying to be careful. He’s not used to this. How much are we allowed to speak? But we found our stride very quickly, I will say.

Karen: We found your stride very quickly and that is kind of, okay, this is what I want to explore a little bit more, um, Because you found your stride quickly. What does that mean, Bianka?

Bianka: So that was something that we actually prepped before in that time. It was figuring out a way to keep it on his head.

Karen: Okay.

Bianka: It was a big deal. So we had actually. Okay. From the time that he had surgery until activation, we had practiced wearing a headband. We had ordered some hearing hair. And we actually practiced wearing that. And he was not fazed by that at all. Because obviously we didn’t use headbands with the hearing aids. We just used wig tape at that point.

Karen: Yeah.

Bianka: But finding the new stride was every morning putting on those cochlear implants. Again, because we were using the hearing aids that that was part of it. I think also Celebrating every tiny little thing was part of finding our stride and I know that It’s, I remember having friends, my, one of my best friends, she had her baby two, four months after Ali. And she couldn’t, no one gets this because I don’t have another baby to compare it to, but I can compare it to my friends. And when my sister had a baby now as well, and you can hear how they just localized sound. Oh, sorry, let’s hear or see. And how they, when they hear something, how they react and how they get a fright. And that is not something I’ve ever seen Oli do. Oli had never gotten a fright before. You know, that startle reflex because… Not from sound anyway. And even, I’m going to be very honest, I’m not really sure there was any other time because we were just always with him.

Karen: Yeah, yeah, yeah.

Bianka: So seeing a baby… Get a fright for the first time because of a sound is quite an interesting, um, thing to see because we had not seen that with him. But as you said so beautifully when he When he heard with his cochlear implants, he came alive and he, as he was so relaxed, did at the same time, so much more aware of his environment. It just added a whole another level to it. So.

Karen: Yeah.

Bianka: You, and I’ve completely forgotten what you’ve asked me. Sorry, oh, finding our stride. So finding our stride was celebrating all those tiny little wins, okay? Was celebrating all those tiny little wins, finding the new… The new idea of when he goes to sleep, they come off, when he’s awake, they get put on. In the first couple of days, obviously, he didn’t wear them all the time. We slowly increased time. But it was, it was very quickly that we got to all waking hours he had his cochlear implants on. And at that age, keeping them on, he had no hair, um, so the headbands worked wonderfully. And he was, he was, had started crawling in the time that he had his operation to the time, the time that he had his activation. So he was like, yeah, so that was, that was something. But he, as I said previously in one of the episodes, we were very lucky in that he really wasn’t a child to take them off. You know, I hear about a lot of parents where they throw their, between the age of eighteen months and two years, we had a bit of a, but I think that was more of a defiance moment and learning who he was more than not one second on.

Karen: He figured, he figured out how to get a reaction from you. That’s it. And that is a beautiful moment in child development. Everybody, come back. But… Not as beautiful for the parents. Okay, I get that. When I see, when I see defiance in children, I love it. Because it shows me their will, it shows me their, um, that they understand how to get what they want and they’re gonna do it.

Bianka: Yes. Yes. That’s, that is very telling. And then of course I remember that this is not fast forward, but when he did throw them, he would quickly go over to them, pick them up and bring them back to put them back on. So it was never a, that he didn’t want them. As you said, it was that reaction that he got out of us. So that was kind of finding our stride. Obviously we were doing AVT and in those first couple of weeks afterwards we were, I think we, we mapped three times a week for a month. Um, if I remember correctly, and then it would go to every second week and then it would go, you know, very slowly. So I know as our audiologist explained to us, it was a very slow process and it wasn’t. I think it was good for him. I can imagine going up very quickly or changing that very quickly would have caused a lot of distress for him. I think.

Karen: You know, now I’m gonna step in and share my experience because I was writing it down, writing the notes down on my cell phone. If you saw me writing down, I was writing down. Because you talked about three main things. Um, Google, the process before the activation, um, you gave very, very good advice. Um, from a, this is advice that I would give as a professional and I would also give this advice as a person. Um. who got implanted. So finding your stride with the second thing and the frequency of session. So I’m gonna try and match that. First of all, um, I knew what was going to happen with me. Um, I had… Everything happened on schedule for me. I went home, so I was in Freiburg, Germany. And then we drove home, which was, I don’t know, I can’t remember, an eight-hour drive to Berlin. And home for me was Berlin because that’s where my husband’s family is and we were staying with them. And I really enjoyed the time to be able to recover and not have questions directed at me. That well-meaning friends, family members, and my extended family members, which are the clients on my case load, They’re my families too, you know, you can’t help but treat everybody you see on a weekly basis as your family, you know, because you’re so excited, you share their hopes and dreams. And, um, it was good for me to be in Berlin because I think I would have, um, these questions and these persistent how do you feel would have been very, very overwhelming for me. Um, and so my family was like, hey, you know, let’s just, you know, enjoy Berlin and um, so we did that. We drove back down and My brother-in-law came, I believe, to look after our daughter. I think, maybe he didn’t, doesn’t matter. Anyway, we had family present there in the background waiting if we needed them. That I appreciated. Uh, they weren’t hovering around me. They were there if we needed them. Um, now My cochlear implant surgeon happened to be in the activation session because she had the day off. And um, she was very, very good friends with my therapist. And my therapist, I flew from Toronto, Canada. Just for a whole week of the activation process. Now, at this particular centre, we were activated over one week to reach full stimulation levels or as close as we can get them. Uh, full stimulation meaning, um, the, the cochlear implant is working hard enough to give you all the Auditory access to all the sounds of speech so that your brain can figure out what to do with it. I did not go onto Google, but I had seen many activations and I knew that it was going to be different for everybody. But I was, I had, mm, I had a scenario all planned out. I’m thinking about myself and I’m thinking about how, Fabulous I am. How good of a listener I am. How everybody said, wow, Karen, if you can… Um, hear with just a little bit with your hearing aids. Like if you hear like, um, oh my goodness, ah, ah, one grape and you can taste it. And explore the world of flavours with one grape. What can you do with a fruit bladder? You know, and this is what the implant is going to give you. And I was thinking, wow. I’m gonna understand speech. It’s gonna sound distorted. Don’t worry about that, Karen. But you are going to understand everything. That good. Okay? It sounds cocky. It sounds mean. Um, and I don’t mean it to sound mean or cocky. I really don’t. But this was an expectation I have for myself and I set the bar really, really high. Big, big mistake. Because the fact of the matter is the Activation itself, I might have pushed myself to respond or to say a sound was comfortably loud when it was actually Really loud. And so that creates inaccuracies in mapping. You rush it. Too hard for your brain. And so when the implant turned on, Everybody waited and everybody waited for my therapist to say something. Um, I chose him just because he isn’t. It was my person and um, he knew me longer than anybody else in that room including my husband because Um, I went to his therapy program when I was eleven twelve thirteen fourteen So, I had that lifelong relationship and I think he just… If my memory serves me correctly, and I’d be happy to share that video, but I believe it was him who called me, and he just called me by my name, I think, I don’t know. Somebody said something and it sounded horrible. Um, it sounded horrible. What do I mean by horrible? Uh, It sounded horrible only because it sounded completely different than what I expected, which is, ooh. And it was so quiet. And I could barely hear anything. And here I am. I know somebody’s talking to me. I wouldn’t have recognized it as a voice, really. It was so foreign sounding. And so my expectations, wow. It went from here crashing down to Everything melts and um, and the devastation that I felt was very hard for me to get over and I Even though I heard, but the devastation, my reaction, my disappointment was so strong that I was speechless. And my therapist kept persisting or somebody kept persisting and I just didn’t know and they thought I wasn’t hearing anything and so they kept getting louder. I’m just like, You know, and um, everybody’s very nice and everybody’s sweet and and as the session goes on it was like um, everybody else is moving on at their pace and They’re doing their thing and everybody’s, everybody’s okay with their thing. They think it’s exciting. Um, but for me it felt like I was a couple of steps behind, a couple of scenes behind. Life that was actually happening at that moment. And, um, and then because I was so devastated, um, the tears were there and I was really trying hard not to fight, trying to Hard not to let them come. Boy, they were tears of, of, of devastation and what did I do to myself? And, um, And at that moment, I’m thinking, Karen, like, calm down, you know, you know, you know this is okay. You know this. But I couldn’t. It was just like I had two, um, personalities, a multiple personality thing going on and it was scary. And the professional part of me was gone. They just weren’t, the person was not available to me and that scared me and So I’m just answering questions and crying and everybody thought they were tears of happiness, but they were not. And um, I’m just holding it in and doing my best and to make everybody happy. And, um, because I’m a people pleaser by nature, I think. And, um, so, um, Uh, I remember thinking to myself, Karen, just get through this appointment, finish it, and then we’re going to go back to the hotel. And, um. Uh, I knew that wasn’t gonna happen because another reason why my surgeon was there was because my therapist is a world-renowned, um, auditory verbal therapist. We looked at him being at the hospital as a training opportunity for the other oral rehab practitioners who were in the program. And there were quite a few. I think there were about twenty people. Like, that’s how big the program was. Is, and um, and I think they not only had therapists, they had social workers, they had music therapists, they had occupational, everybody wanted to see Mr. Warren Estabrooks. And I was, I was very excited for them too, but I really didn’t want to I said to, to Warren, I said, I don’t think we should do this session. I said, I won’t be able to do a thing. And I’m not so sure I can make you look good. And he says, what do you mean make me look good? He says, it’s not about me. It’s about… It’s about the learning process. And he says, it doesn’t matter how you look. He says, it doesn’t matter. This is life. We need to, what do we do with that? He says, Karen, you’re going to do just fine. You know, come on, give it a try. And, um, I said, okay, okay. You know, and I sat down and, um, So now we go into the finding your stride part. Um, it was interesting because if I would have had my way, Bianka, and I’ll be very, very honest. If I would have had my way, I would have gone back to the hotel room and asked everybody to go about their day. I would have locked myself in that room and taken the implant off. And I, that would have been, and I knew that that would have been the worst thing to do, but I really needed somebody to I just didn’t see what the benefit was in wearing this implant. I really didn’t. Not for me. And that is why it was… So good that my therapist was there, that we paid for him to come, that we paid for this thing, we boom, boom, boom, boom, boom, boom, boom, boom. And I wanted to make him, you know, I just, I did something that I didn’t want to do and So my husband was filming and my daughter was there and she’s colouring and she’s sitting with my surgeon who is amazing. Um, she, I think I got more help from her. Because she just she was there.

Bianka: And she knew what she needed. She knew what mom needed too, huh? She did. Yeah. And as you said, she has taught you so much. And that was exactly it.

Karen: Yeah. Yeah, yeah, she was, she was sitting there with my daughter, like, you know, and she was just having a good time. She’s a woman, she’s, her partner is, um, the head of the obstetrics department at the hospital, and so she knew woman. Wow. I guess. Just like, you know, she had that strength, my surgeon. She just knew and she was there smiling and I’m looking at my therapist thinking, Oh boy, you better. I want to kill everybody. You know, I sat down. And we did the session and everybody’s watching and I just ignored. It didn’t, it didn’t bother me that everybody was watching. It really didn’t. I was excited for them. But I was so afraid of disappointing everybody. And um, so I sat down and my husband’s there filming and um, and Warren did his thing. And um, what was magical about it is that The therapy went as the therapy should go. And what was interesting was as time went on, In the session, and as he created some successful listening opportunities for me, I could hear the quality of his voice change and evolve and improve. To the point where I could understand, not a lot, not a lot, but understand enough for me to find my hope again. And so I got myself out of the crater or rather my therapist, Warren Estabrooks, and my surgeon and everybody that was in the room. And this is not a luxury that people have. It just happened this way. And um, and uh, And that is, and that hope was the light at the end of the tunnel and it kept me going and I found my stride and I started walking and I started walking fast. Um, and was like, okay, I can handle this and this implant is going to stay on. And I was, I found my drive, my excitement. Now, can you imagine what would have happened if I didn’t have a therapy session after that activation? Um, that is why I try to train audiologists who are doing cochlear implant activations to engage in therapy right away. So that the client walks out of that session having that hope and the drive to keep the implant on. If I didn’t have my therapist there, it would have turned out very, very differently. And for that, I am so grateful to my family and add the resources to be able to do that. You know, and you know, the therapists were there and they were learning and they would have been there too, but it would have been They would have been afraid to push me because they’re like, oh, well, Karen has been They knew me as well in my professional capacity and they would have been handling me like with kid gloves, if you will. And yeah, so, and then the frequency. Is key, I think. Um, because I was activated on Monday, And then I returned after listening through four listening programs that got progressively louder. This is fast. Um, other places don’t do it that fast, at least not in Canada, but that’s how they did it in Germany. And so I came back the second day for another map and I had better access and the access put me into um, a much better Ability to understand and better auditory performance. For sure. And I could hear that difference. And that gave me even more. Okay, so I quickly re-centred myself like as if you’re on a GPS system and you look too far ahead in the future. I went back to see where I’m going. Re-centred my location and saw me myself making progress, if that makes sense. So I had… I had another therapy session and then the next day we, um, I believe that was Wednesday so we had another session activation so Each time I saw the audiologist, I had a therapy session right after. And it was so encouraging. It was so enjoyable. It was hard. Um. But I could hear myself making progress. And that is what I think every implant recipient needs is the opportunity to hear themselves make progress. And, um, and then on Thursday we had a break, but I still break from the hearing technology piece of it, which is activating and fine tuning. We did not see the audiologist that day, but we had a therapy session again. And I did worse, I think, on that day than I did the day before. Um, and, but I wasn’t worried because the professional part of me, personality came back and said, again, up and down is good. It’s okay. It’s your brain going, I’m trying to prune. I’m trying to prune the garden right here now. And then on Friday, had another therapy session and an activation session. And then we went home. So I like that frequency. So I had a therapy session every single day that week. And it’s very similar to yours. You had session three sessions a week? Bianka.

Bianka: It wasn’t therapy though, it was just mapping. We didn’t, we had therapy though. Yeah. We had therapy weekly.

Karen: Okay. I like that way of because you’re trying to get as much as complete auditory access as your body can do. Allow you to have, you know, and I think that’s really important as quickly as possible. Um. In my personal and professional opinion, when adults are being fitted with hearing aids, they don’t get Most of the time they say they can’t tolerate the loudness of being at where the hearing aid is supposed to be set to give you full access. It’s such a shock for them. That many audiologists will say, okay, we’ll make an appointment in two, three weeks and then The person doesn’t come back or they don’t, or they say, you know, it’s too hard and then, and then the audiologist continues making adjustments to improve comfort which often means taking things away.

Bianka: Okay.

Karen: You know, and then if you take your access to sound away, you don’t understand it well. And then if you take your access away and you don’t understand it well, Do the hearing aids work? No. So they either return them or they put them in the drawer.

Bianka: Okay. Sure.

Karen: You know, and I will tell you my friend, my darling friend. I understood the benefit of how much benefit babies have over adults because they get what they need and they get it right away. Adults tend to get too much into the mix and they don’t give themselves as much as they actually need. And because it is uncomfortable, it is uncomfortable. It is weird. It is annoying to hear all of these sounds and you don’t know where they’re coming from and they sound so foreign. For example, the furnace coming on. You know that. The wind, the furnace. I don’t know how to describe the furnace. The furnace sounds like a furnace, right? But for me, when I was activated, it sounded like boop, boop, boop, boop, boop, boop, boop, boop. So those two sounds happening simultaneously, boom, boom, you know, at the same time. And it was just like, is that, that does not sound like the furnace. But that’s how your brain is interpreting it because it’s an electrically evoked signal. But what people don’t understand Most people think that, okay, Karen is relearning that the furnace sounds like boom, boom, boom, and that’s what she hears for the rest of her life. No, no, no, that’s not how it is. The brain adapts and changes. So it takes that signal, boom, boom, boom, boom. And it will say, okay, we’re freaking out. That’s why we’re giving you this interpretation. But what is it really? We’re going to work with it. We’re going to change it. We’re going to shape it. We’re going to make it sound more and more and more like, What you heard the furnace to be when it was acoustically evoked. And now the furnace sounds like the furnace. It sounds richer in quality than it did before. There’s more nuances to it, but it’s natural sounding nuances. What sounds artificial is the processing of the signal. And you guys hear this too. Have you ever watched A movie or a TV show where when someone is talking you don’t hear the background as well and then when the, you know, when the person stops Then the microphone brings out the background noise. Do you hear that? That constant shifting? That’s what we hear. And that is what sounds artificial. That’s not natural. Okay. Um, but ever since hearing aids came out with all their fancy digital Technologies and signal processing which is so helpful for people to use when it’s so noisy and somebody’s trying to talk to you. That’s what this technology is there to help you do. Um, but we have to understand that that is the microphone signal processing technology and the brain doesn’t do that. Um, it does it more sophisticated in a more sophisticated manner and you don’t even notice it. It’s just, it just happens, you know?

Bianka: And I think that’s such a, you, you asked earlier about sort of people around us and family. So for the most of the people who were going through the process with us understood that only getting switched on wasn’t a cure. But we still got so many questions about, well, now he can hear. So now it’s, it’s over and done. And I think what you’ve just mentioned about the brain and, and having such a good understanding that just because you have access to sound doesn’t mean that you can actually hear what’s going on. And that is something that I think is a huge misconception of both hearing aids and cochlear implants. Um, but more so with cochlear implants.

Karen: It, it is such a big misunderstanding and it’s very, very difficult for people to explain it. And, um, that is why Most of the therapy sessions that happen with adults is in the beginning stages is answering questions. And asking them guided questions. If they don’t have questions, then I ask them questions that I know will get them to address those topics that they’re afraid to address as Oh my goodness. Is it possible for it to sound this bad? And I made such a big mistake. Um, we have to talk about that. Um, And I explain why. And once they understand why, they’re like, oh, okay. And then the stress goes away and then we can get back on board. And this is what therapy did for me. It was like, I can hear myself. Like, you could actually hear the quality of sound, um, improve. Quality of sound is how my brain heard it. Nothing happened with the implant. The implant’s doing its job. What’s changing is how your brain reacts to the sound. Yeah, and So, it’s, it’s babies, I think, do this on a, well, I don’t think, I know. I know. They do it at warp speed. And… And that’s exciting to see, but, you know, parents are often asked to wait for a week. After their baby is activated before they have their therapy session, I try not to. I try not to. I try to see them as quickly as I can. The only time I wait a week is when they go for a mapping session, they’ve had the implant for a while, And they’re listening and they’re talking. They’ve gotten used to the implant. They just have a new map. Then I asked for a week. Um, because It’s more traumatizing because when they’re in a, in a small environment with me, this is where they hear the changes that happened and the brain is freaking out. And it sounds like muddled speech and I don’t want to stress them out. Okay? So I give them a week to get used to it and I keep in very close contact with the families by you know, and they send me pictures and stuff like that. So I talked a long time. I am so sorry, my friend.

Bianka: Interesting question from a baby’s point of view. So if, if you, if a baby has had access to sound with hearing aids, um, does that influence the, the cochlear implant activation or not? In the sense that, I would not want to say use the word guarantee, but would you see different results than a child who didn’t have any access to sound with hearing aids? No. Okay. Because it’s a different mechanism, I suppose.

Karen: Oh, gosh. Well, that’s such a good question, Bianka. Um… My, my overall answer is We need to dive deeply into what the therapy, what aspect of the activation the therapy is better for. And so I’ll break it down. Yes. Do children, so let’s talk about, I think what I’m hearing you ask me is, do children do better? Do they respond better after having therapy? Yes. When in the activation appointment, do they understand more? Do they have better outcomes at the time of activation? Is that what you’re asking me?

Bianka: Yes, those who’ve had therapy and or access to sound because, you know, there’s a lot of children that wear hearing aids and then they don’t necessarily get access to sound, but they’re still going through AVT, um, versus those who don’t.

Karen: Mmm, no. Um, why? Because there are some, there are many kids who did, amazing, with the hearing aids who did, um, I shouldn’t say many. Half of them did really well at activation and you would think, wow, they blew my socks off. Like, You know, and I’ve seen kids, you know, they get turned on and they’re understanding everything in the open set, which they weren’t able to do that as well with hearing aids, but they did it and they were like superstar performers. And then I see, I’ve seen some superstar hearing aid performers go into a mapping session and get activated and not do well. You know? Um, And that’s hard as a therapist because you would think, you want to think, you want to think. It’s going to make the activation process so much better. Um, I, you know, I can’t say a higher percentage. I think I would rely on research for that, but in my professional experience, I could not predict who was gonna do well because so many times when I had a baby that I thought for sure would do really, really well and They go for their mapping session and they bawl their eyes out. They’re so scared and they’re crying and crying and crying. And it’s so difficult to, to calm them down. And what an unexpected reaction, you know? And so that’s why I It is so important for parents to understand that just because The kid does well in therapy with hearing aids. It doesn’t mean they’re gonna do really well in the activation session. However, If we look at, um, if we look at longer term outcomes, it’s better. Um, because the brain is already used to adjusting and Fact number one, the brain is used to moving around and exercising and so it will be quicker to, to adjust and adapt. Okay, that’s number one. Number two, Remember, in AVT, the parent is the primary client, not the child. And so by then, um, parents are looking for the child’s responses. Behavioural responses to sounds, they, um, they see it as a response. And they respond to the child as if it’s an auditory response, which it is. And then they learn to pair spoken language that is meaningful. That is, um, that is understood because of the context. Babies are constantly learning and adapting to it. Um, and then hopefully the parents would have been well prepared by the ABT, um, in strategies like three strikes and you’re out. Not the kid. You as the speaker. If the child doesn’t respond to their name, You’re not gonna be panicking after you’ve called the baby three times. Stop it and let’s change the strategy to create some listening success. So it’s the parent guidance, I think, that they get in AVT that is the thing that matters. And the exercise and the listening attitude that you work so hard with babies, even when they don’t hear anything, With the eye hearing technology, they do understand this. They understand that, um, You do this, you do this. And so when they get activated with an implant, They hear something. And it’s a shock. And then you do this. And this is a smile. And it’s okay.

Bianka: Yeah. You know, I think that that’s, that answers my question. And it was my understanding of the brain aspect of it as well. And obviously our training as, as the parents, as you say, but I’ll be honest with you that If we didn’t have the reaction that we did in the activation, I think as a parent, I would have felt quite defeated as well. And just in that moment, I know that it wouldn’t be a reflection of what, what was going on and going forward, but. You know, he, he had like. A textbook type of reaction, you know, that was a full body turn the second he heard that sound. And that was just like so much hope, as I said, for me versus had that not happened. Like you said, we were explained by the audiologist and the AVT, but that can’t negate the feeling that I would have had, I think, if we hadn’t experienced it that way.

Karen: Can I ask you a question? And that’s fair. I think that’s very fair. I think the audiologist would have been concerned too. Because if you don’t get a behavioural response, we’re wondering, oh, it’s not Um, it would have scared us too. Um, but what about if the baby, what if Oli would have cried inconsolably and would have been so upset?

Bianka: And so towards the end of the session, he did start to cry, but it wasn’t a, it was more of a just tired and, and again. What the audiologist and speech therapist had explained to us is this is quite an exhausting experience. Then I know and so Britain here, I do remember that he, he was a horrible sleeper. Um, and, but he actually slept quite a bit more and he wanted to nap and he wanted, he wanted to have, Boob all the time as a comfort in those first couple of weeks, too, which I think kept him close and all that. So had he cried inconsolably, I think I would have. The feeling I’m getting right now is like, oh, is this hurting? Did we do something wrong? Did I, you know, was this the right thing to do? I think it would have brought up a lot of feelings of, you know, so. Yeah, I think we would have had to work through those feelings even though.

Karen: Yeah.

Bianka: I think that, I know this is now five years later, but as I’ve shared with you, with him recently having had a napping change, I did have those feelings when he expressed the fact that sounds actually were hurting. Um, and that was the feeling that I had. How can I have missed this as a mom that he was hearing something that was actually causing him discomfort? It was. So as a baby, when you can’t, he can’t actually speak to me and tell me what it is that’s causing him discomfort. It would have been quite unsettling, I think.

Karen: Yeah. Yeah. And I, and I can only imagine. And having that feeling, I mean, I had that feeling for myself. It’s the worst feeling ever. And, um, and that’s why I think it’s so important to have The, a really, really good Practitioner, whether it be an AVT, whether it be a teacher of the deaf, whether it be, um, it doesn’t have to be an AVT. It can be an audiologist. It doesn’t matter what approach. Communication, learning, early intervention approach you’re using. At the end of the day, it’s really important for expectations to be such that if the baby is crying, it’s a really good response. Please feel good about it. Now it’s gonna mean so hard, but it’s a really good response because we want the opposite behaviour. And, you know, um, and we’re gonna do everything to make sure that the sound is comfortable. It’s just a shock. That’s, you know, and we’re watching it, you know, and if it’s a nice response where they look at you, that’s great, too. It’s an opposite response. We’re looking for the opposite behaviour response. It’s gonna be okay and we’re here with you. That’s what I would do or say, but Bianka, you always have great ideas of what to say in these difficult situations of what, how a professional would respond. What would you say?

Bianka: Well, I think that we actually had You know, the whole Ubuntu thing comes back here again in the fact that we had such a great team. Both the AVT and the audiologist were amazing in how they explained this to us. And, you know, it’s something that I’ve… That is so subtle, but it’s that look. You know, I remember after Oli, so as he, in the video that I showed, he turned to the sound, but as we went through to more and more mappings, it was quite interesting. It’s almost like Oli associated the sound that he was hearing always with the audiologist. And it became a little bit of a joke because every time he heard something, he’d look straight at her. It was like, you did that. You did that. And it’s, it’s, it’s that same thing that you just said. It’s, it’s understanding is that If the parents understand what’s going on, it probably would be very different too. So I know the audiologist and our speech therapist said to us, there is a chance that he could react with crying. Absolutely. They did explain that to us. And by the end of it, he was, he was done. And I think that’s where information, which I know I’ve spoken about before in our previous episodes is so important to me as a parent. Tell me the facts. Tell me what can happen. Prepare me, you know, for worst case scenario or best case scenario so that I can go in and not feel blindsided by what could possibly happen. And so for me… It’s just that, it’s that connection. And, and even as the audiologist, audiologist and a speech therapist or what you’ve even just said, you know, if this was my kid, I know I could, I would probably feel the same way, but. We know what’s going on. We know that he’s having a reaction, which is great. We know that he’s hearing something and there is. So I think that’s, that’s how it played out. However, it doesn’t negate the parents’ feelings.

Karen: No, no. And, but, you know, I like, again, as you said, it’s an Ubuntu thing. And just. Anybody who has the honour of being present in the room um, when an activation comes on or even in a therapy, any type of intervention, If you are in the room and you have the honour of being in there, you can’t just sit off the side Um, let’s say it’s the audiologist who’s doing the, the therapy and the student is observing. The student is part of the process too and they have to be involved. Because it is an Ubuntu thing. Because I know I’ve been observed a lot. And I’ve looked at those people for support, oh my goodness me. And so I have to let my observers know that too, you know, you come in here, you, you, you. Be on your game.

Bianka: Yeah, you’re part of the process.

Karen: Yeah, be part of the process and um, and that’s why you know, and then the family behind us I think, what was that like for you? I mean, I just had my husband and my husband was well-trained. How to respond and he was, he was great. He was more interested in filming. He was busy. Um, And with me and my daughter, it was different. And she was involved in the therapy sessions. I’ll show you some sessions like that as well. Um, but. What was the family, the extended family like?

Bianka: I think we, we were so lucky in how supportive everybody really was. Um, specifically as I said, my mom and my stepdad, my dad was overseas. Um, so far away, but constant, constant checking in, but it is. I don’t often know how to describe it other than it’s so different even if your loved ones are right there because they’re still not going through it quite the same as what you’re going through as the parent. So, and I feel like sometimes you’re also sort of trying to manage other people’s expectations too, um, because they don’t quite understand the whole process. And so. I remember hope was the big emotion within the session, but I can close my eyes and I can still remember walking out of the office to the car and getting in the car and wanting to go to pieces and feeling a sense of relief. That we wouldn’t have to explain it didn’t go like we, it didn’t go according to plan or this and this. We could just say it went well and we could leave it at that. Because there was so many people who were supporting us, yes, but that there is a heaviness to have to answer all the questions all the time. I think which was kind of what you were saying about being away from… Your, your parents who knew they would ask you all the right questions, but there is a heaviness about having to answer all those questions. You know, what did he hear? How much can he hear now? What percentage can you hear? How many times we’ve been asked what percentage can you hear is like, and as we now know that not how you are.

Karen: And then, and then when you do hear well, everybody says, oh, you’re doing so well. And I’m thinking it’s three months post implant. It sounds awful still. Yeah, I, I, I, I understand everything that’s being said, but it sounds horrible. Don’t, don’t abandon me, please. Don’t.

Bianka: I don’t, I loved all the support, but it’s, it’s, it is, it’s a lot because we’re, we’re, you’re, I don’t want to negate anything that in all the support that we received, but it is, um, I do feel like at some point you’re also taking care of those people because they’re also just as upset through the process and they were worried about you and. And you’re just like, yeah, you’re falling apart.

Karen: Can you, can you say that again? Can you say that again? It is hard because we have to take care of everybody else and not everybody taking care of us. Please, please take care of us. Please focus on the parents who are with the children. Maybe not ask so many questions and just be there as a support and to help out. Um, I think that’s more, we’ll tell you. Yeah, I think, yeah, that’s the best advice I could have, yeah.

Bianka: And I, and I do know that it, it comes from such a good place because people don’t know what to do with their feelings around what you’re going through. So something that’s happened here in South Africa, I mean, and it’s just, it’s something that South Africans say and it was like such a big trigger for me through the process. And even today is when, um, somebody will say, yes, um, you know, Oli was born deaf. He wears cochlear implants. He’s doing well. Um, and then they’ll look at you and they’ll go, oh, shame. And it’s a term that South Africans use. It is.

Karen: It is. It is. And it’s almost positive.

Bianka: Yeah. They’re caring. I know they don’t know what to say and it’s a caring, it’s an endearing almost.

Karen: That’s how they do it. Oh, shame.

Bianka: Yeah. And I’m going, it’s not a shame. He’s doing so well, you know, he’s, he’s this perfect little child that he was, you know, he just hears a little bit differently to everybody else. And that, and I remember people, I went, when I shared this with family members and friends and they’d be like, well, you just need to get over that because that’s just your stuff. That’s not, but the thing is. He’s still, it’s the judgment, I suppose. Um, I sometimes felt that he can’t do anything that he wants to do and that’s why you’re saying, oh, shame, but He’s, he can do anything and everything.

Karen: Ah, so that was your mind frame and how you responded. Yeah. Oh, this is something that we need to talk about because in another podcast, because, uh, sometimes we have to Um, hear things. We hear things. In a very, very different way than it was intended. And this is the big, big fear of professionals. And we’re often, we’re getting to the point now, I think, professionals, especially physicians, Um, because they’re so stressed out that it doesn’t matter what they say, it’s gonna be misunderstood, and so they just better not say anything at all. And, and then that is interpreted as, she doesn’t care, and I’m just thinking… Oh, especially when things go wrong and um, and, and I’m not talking because they do and we should also talk about that because I had a cochlear implant soft failure. Um, and it’s nobody’s fault. Nobody’s fault. But we have so much to talk about, my friend, and I am so glad that we get to meet as often as we do and to share our conversations, our Ubuntu process with everyone. So next week.

Bianka: Exactly. I think we have to stop there. Otherwise we’ll end up speaking all day, but we’ll next week, I think we will chat a bit more about the early, the early days of the implants. I’m going to a bit more detail regarding that, the adjustment, the therapy, um, And, and the people who support us that make the Ubuntu part of it and sometimes it causes a little bit more stress than they, than they want to, hey? Or they tend to, I should put it that way. All right. Thank you very much and we’ll see each other next time.

Bianka: So that’s it for today’s episode of Ubuntu, hearing, communication, language, and connection. Thanks for spending time with us.

Karen: We hope our conversation sparked new ideas and gave you some comfort or simply made you feel connected.

Bianka: We’d love to hear your story. Reach out, share your experiences, and keep the conversation going.

Karen: 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.

Bianka: Until next time, take care and stay curious.

Disclaimer: This transcript was generated using AI and may contain errors or inaccuracies. While we strive for accuracy, automated transcription may not fully capture nuances, context, or speaker intent. For the most reliable version, please refer to the original audio.

Bianka: Hi there and welcome to Ubuntu, Hearing, Communication, Language, and Connection. The podcast where we explore the power of connection, shared experience, 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 I’m also the founder of Olipop Toyshop, where I create tools and resources for listening and language development.

Karen: And I’m Karen McIver-Lex, and 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. I bring both professional expertise and personal experience as a cochlear implant and hearing aid user myself.

Bianka: We’re so excited to have you here. The space is for honest conversation where we share insights, stories, and our journeys with hearing communication and connection.

Karen: We’re not here to offer expert advice or tell you how to do things. Instead, we’re sharing our experiences, our challenges, joys, and the many ways we navigate the world.

Bianka: So whether you’re a parent, a professional, someone with hearing loss, or perhaps knows someone with hearing loss, or just curious, you’re welcome here.

Karen: So pull up a chair and join us because I am because we are.

Bianka: So welcome to our third Ubuntu episode. We are really excited to be here and we are just going to continue the conversation from where we left off last time. So Karen, last time we really chatted about both of our stories. Leading up to Oli’s implantation and your own implantation and also the different feelings that, I guess I experienced as parent, but also as Oli, where I said he was so relaxed after having access to sound and you shared beautifully how you felt the same way. Especially in life with colour, which is such a beautiful metaphor to explain access to sound.

Karen: It’s amazing how this body language is so, so important to observe. I was looking for pictures of me in therapy with children. And uh, cause I was trying to find a picture for a publication and for an article that is being released in a journal. And I was looking at videos, you know, video footage and I was watching how I’m watching everything that the child is doing and I’m playing with them and I’m just looking at the body language in wonder. And I love that expression on my face because it, it truly is. It wonder at how the body responds to really, really good sensory information input, like being able to hear so well, yeah.

Bianka: I thought it was a great reminder as well. We’re at some point and we’ll have a chat, I’m sure enough, but this whole idea that cochlear implantation or even hearing aids, it’s not, it’s not a cure. You know, at the end of the day, there’s all this work that goes into it as well, which is this holistic way of looking at it. So yes, absolutely, the body language of the person using this technology has to be taken into account because they could be doing well, I’m assuming, but be in pain if it’s not working for them, yeah.

Karen: Yeah, yeah, it’s, it’s, I, I love that we talked about that, that physical aspect and you know Bianka as a kinesiologist. You bring so much into this conversation about how the body needs to be regulated, how do you get the body to be regulated, and um, I, I just, body language is so, so important and I think we, uh, professionals can miss those cues and, um, That’s what I try to talk about with the parents all the time. Do you see that?

Bianka: Yes.

Karen: Look at that. Did you see that? Did you see that? What? Um, and, and sometimes it can be just a child laying down on the floor and I’m like, oh my goodness. Did you see that? Look, do you know what your baby’s doing there? And they’re like, lying on the floor. And I’m like, he’s resetting his auditory system. He’s trying to ground himself. He’s overwhelmed and he’s trying to get himself, uh, a little less overwhelmed.

Bianka: Exactly, a little less dysregulated.

Karen: That’s right, that’s right. So, um, yeah.

Bianka: And I think that’s such a good way to lead on into We spoke last time about going into the operation and that little, I want to say ritual that you did for yourself, um, saying goodbye to your ear and, um, Yeah, I suppose what else were your feelings going into the actual operation based on not just the hearing aspect of it but the physical operation?

Karen: I think that’s really. Great question. So many people, they don’t talk about the part where they leave their hospital room. For me, in my case, it was leaving the hospital room and going down to the operating room. Um. One of the things I asked my surgeon, please, please, please, can I have my hearing aid on at all times? And I know it’s going to whistle so because you’re going to get my head into a certain position. And it’s gonna be uncomfortable, but I need to just poke it in, just do this, just do that, and just please, please keep it in because If I don’t have it in, I, I feel lost. And she said, absolutely. Um, and uh, so I remember just going down in. Actually. Yeah, I remember going down the hallway and the surgeon was with me. In fact, she spoke to me before we left the room and she said, you know, I’m just coming in here for five minutes. No, two seconds. I have to go to the OR, but to get ready for you. But she says, you know, it’s going to be okay. It’s going to be okay. And she says, you know, and, and, um, she says, is there any music that you would like to hear? I said, how about you pick what you want to hear? And she says, awesome. She says, I’ll pick my favourite music and um, and she says, we’ll just enjoy our time together. And um, So when I went into the operating room, there was a lot of questions. It was a lot of, you know, what’s your name? You know, what’s your date of birth? And, you know, what year do you want? And it’s this one, you know, and they’re checking every piece of documentation. That you have signed. These are decisions that you’ve made. And um, and I love the warm blanket, that I got. And um, being able to communicate and hear and understand what everybody was saying to me. I was so afraid of being off the air. And, um, and my surgeon was just, she didn’t even think of talking about it with me, but, ah, she said, this is what I do with all my patients. And, um, You know, I can’t imagine being turned off and fought Don’t worry, Ken, we’ve got you. Um, I was asking all kinds of questions in the, um, operating room when the anesthesiologist came in and, uh, I said to him, so… I asked him, I said, so how long will it take? And he said, well, he says, you should be falling asleep just about and then So that was it.

Bianka: Okay.

Karen: And I woke up. It was, it was like I went to sleep and had a nice solid sleep with no dreams and woke up and my, um, My hearing aid was in there. And I was so happy to have my hearing aid in there. And um, I wasn’t really expecting to be able to hear anything on the side that was operated on. Um, as I mentioned, I had some low-frequency hearing, so I could hear myself swallow and, um, you know, sniffle. Because that sound is so low in frequency and it’s so amplified when it’s covered up like it is when you finish surgery. And I could hear on that side. And I was… No way! This is cool! Like, it sounded exactly the way it did before going into surgery and, um, I kept, you know, rubbing the, the, the, the band-aid and, you know, thunk, thunk, thunk, thunk, thunk, thunk, and I could hear. And I was in shock about that because I was very, very prepared to say This is it, you know, and um, so the, you know, the surgeon comes in, the nurses come in, I said, I can hear, I can hear, I can still hear in that side. And she said, yeah, okay. You know, you never know. She, she doesn’t want to promise anything.

Bianka: Absolutely.

Karen: Yeah. So I was thrilled about that. Um, and um, when you fast forward six or seven months, that’s when the hearing starts to change because the, the act of the operation and the healing process and the Chemicals that run in there, the medications, whatever chemical they may be.

Bianka: Yes.

Karen: You lose your hearing slowly over time. Okay. And um, but it only dropped about ten to twenty dB, but I could still hear if it was loud enough. And that was good enough for me. That was a bonus. That was the cherry and the whipping cream of the banana split sundae. Wow, because the combination of what I could hear naturally and the cochlear implant was divine. Just divine. So when people are thinking about getting, um, a hybrid implant, you know, hey, you know. You’re gonna love the sound of that.

Bianka: Yes.

Karen: But one of the things, and people did ask me, why didn’t she get a hybrid implant? Well, I was afraid that You know, if I get a hybrid and I only partially implant the electrode and I don’t cover as much of the region as I want it to, which is the low frequency, too, then I would regret it.

Bianka: Okay.

Karen: And I’m so glad that I went with the full array and full name searching and um, And I came out and came into the hotel room, uh, hospital room, and um, I called my parents. They wanted to make sure that I was okay and I could call them because I could hear with the hearing aid. And um, They were thrilled and um, and then a couple of hours later it was like, hey, let’s go get something to eat. Like it was just really, really easy to recover from. Um, I think the first day was easier than the second day. The second day I was wiped out. I was super. Super tired. And um, when you’re a private patient in Germany at the particular hospital that I was at, because not every hospital does this, They wanted to keep me for five days and I loved that. Um, I really, really loved it. I don’t like staying in a hospital. It’s boring. When are you going to do that? But Every little aching pain, every little hiccup that I made, every little, you know, gurgling, um, Lots of things come up, you know, little things like swallowing a little bit of um, blood and because that’s the ear draining the blood from the middle ear cavity and it’s completely normal. Not a lot.

Bianka: Yes.

Karen: You know, it wasn’t painful, but it was just, should I be, should I be swallowing? Ding, ding, ding, ding, ding. Is this normal? Yeah, yeah. Well, it’s okay. And then I had a headache. It was so, the pressure of the band-aid was so tight and um, that headache kind of bugged me. Um, but it took me time to get out of the anesthesia.

Bianka: Mm-hmm. Groggy?

Karen: Yeah. Yeah. Yeah. And uh, I was very spoiled with within the five days. Every single morning we had an appointment with the surgeon or the resident or Whoever was on call to see patients on the floor. And it was nice because I could sit with other CI patients who had had surgery. And this is a hospital that does a lot of surgery. This is just not like a one surgery a day. They do quite a few because the hospital is back out there. One half of the floors were divided, uh, devoted to ophthalmology eyes and the other half was just ENT. And, uh, So there was a lot of operation going on and people are just sitting there and they’re just waiting and then we got to share our stories. And I cannot, that in itself was such a gift, being able to sit with other people who had the same surgery as you did, and then you go, what’s your story? What’s your story? What are you doing? There are some people who are being explanted and re-implanted because they had pain. Um, and I was very aware of these stories, like, because this is what happens on my case though, too. Right. So, I don’t know, I think, you know, every, everybody agrees that, you know, parent, parent, teen, teen, kid, kid, contact is so, um. Essential, it’s a need. And that was the opportunity that, um, I would have gladly paid for and I did, you know. Um, and then, um, I was able to leave. On day five and I was happy to stay. Okay, call me a princess. Call me a princess. But I, I really, really appreciated it because I wasn’t stressed. There were so many things that really stressed me out, but it was resolved in five minutes. And I could recover and then I went home to my husband’s family in Berlin and it was great because they didn’t know what to expect. They weren’t, you know, constantly hovering over me like my parents would’ve. Like, are you okay? Do you hear anything? What do you think? What do you think of that? Remember, you know, um, I just… They were easy going. Yeah, nice. It’s looking good. Nice to catch up with you. And um, and then a month later was the activation. Okay. And so what was the activation like for you? I want you to go first.

Bianka: Well, I want to, I want to kind of touch on something that you’ve just really shared about as far as your story and having that That connection with all those other patients who were sort of for a similar journey because as we spoke about last time we had those parents who came To the hospital, which was so amazing. And ours was a little bit different as I would have loved five days in the hospital because of everything that you just said. Every little thing. Every little symptom I would have wanted to query, I would have wanted to ask. So we were released two hours after his surgery. Because we were in the middle of COVID, the surgeon didn’t want us staying in the paediatric ward in case whatever was coming in. So yes. I recall just sort of kind of quickly getting the call. We were at the hospital already, so I just ran inside. And as I came into post-op, he was laying there with that, his face was so swollen from that compression bandage. And everything they’d done. And he was just looking, just looking, no stress, there were no tears. And we went back to the paediatric ward and they basically said as soon as he’d fed, um, and had a wet nap, a diaper, a wet nappy, we could go home, which he did on demand and off we went. So we stayed close to the hospital. That was the Saturday evening. And then we were given antibiotics. As you, and I could, we couldn’t get them in him. Everything we tried. So that was my first panic. We’re trying to get the antibiotics in and he is just spitting. I mean, we’re. We just couldn’t do it. So we phoned the, um, and throwing up as soon as it got into his stomach. So we phoned the surgeon. I think it was like eleven o’clock at night. And she said, okay, I’m going to call in another brand of antibiotics. And then there was a 24-hour pharmacy and my husband went out, quickly got it, and we got that in. And then that compression bandage, I remember so well because we, I don’t know how long did you have yours on for?

Karen: Mine was on for at least two days.

Bianka: Okay.

Karen: At least two days. Like they really wanted everything to be tight and compressed. In fact, uh, with my second surgery on the same year, more to come on that, but it was super, super tight. And it was giving me a headache. And I was just like, can you just loosen the bandage? A little bit. And they’re like, nein, nein, nein. I’m not exactly. And they’re like, we can give you Tylenol.

Bianka: Yeah, exactly. And that’s it. So, and we, I, you know, I don’t know if Ali had a headache because he was six months old, so he couldn’t tell us that. The first night was a bit rough and we, we stuck to the schedule. We woke him up every four hours and gave him pain medicine and all that. And. We have photos of the next morning where we were staying in my mom’s friend’s apartment and we’ve got all these pillows around him because all you’re now concerned about is him falling over. He just learned to sit before this, uh, About two months before the surgery and he was sort of already moving and attempting to crawl. So we were just packing pillows everywhere in case he would fall over because his balance was definitely somewhat thrown off and after the compression bandage came off his balance was fine so it i think the head wrap or the compression bandage was more of the cause of his I don’t know.

Karien: It does. It does feel. It does feel happy and you kind of feel lopsided and it’s more the anesthesia than anything like, you know, it just comes and goes and Like I’m saying, the minute you come out of surgery, you feel great and you’re like, you know, I went to the cafeteria to eat. Because I was still hungry. And that required walking outside of the building, right? Um, but the second and the third and the fourth day, uh-uh. No, no, no. And it’s just my body. It just takes time to get this stuff out of. Out of me.

Bianka: Absolutely.

Karen: And um, it, it, it’s just like, I don’t want to like babies bounce back. From a lot of things, you know, and what you’re describing there, you know, I saw that I had babies on my floor as well. They were on the other side.

Bianka: Okay.

Karen: And, but I could see them, you know, and then bouncing around, jumping up and down on the bed and When my surgery was with me and she’s like, yeah, the little one bounced back so fast, don’t they, you know? You’re not kidding. Yes. But, um, you know, it’s just, but, you know, I see it all the time on social media, Bianka, like, Babies and children are being, uh, released from the hospital and there’s so many things going wrong, like sometimes the, the, the stitches might, you know, swell up and bleeding might happen and, you know, um, you know, what comes in, what goes out, um, you know, there’s very specific, uh, instructions about how to, um, to, to go to the ladies room and uh, to the men’s room and whatever room. And um, you know, don’t push too hard, don’t strain, makes you got lots of fibre, and it’s true because you’re so, you’ve Somebody’s been in there and it just feels swollen and inflamed and you feel that. But if you push, if you lift anything, you really have to be careful. Yeah. And, um, I don’t know, I just feel badly for, for, for parents. I mean, I understand hospitals needing to discharge and It is an easy surgery to get over. It wasn’t hard, but There’s so many things going on around here that look normal, but there’s a wide range of normal. And parents are putting, you know, photos of their child. Post-surgical workup. And, you know, they’re like, should I go to the doctor? Should I call the doctor? And I’m just like, yeah. And they can’t, they can’t ask because it’s, you know, money.

Bianka: Absolutely. And I think that is so valid. And I do, again, our community, our surgeon was phenomenal. I mean, we had her cell phone number. As I said, we phoned her that evening at eleven. On the Monday morning, so Saturday evening we left the hospital, Monday morning we saw her and she took the compression bandage off. And that was again something that I wasn’t entirely prepared for. I was like, oh, it’s just a bandage you take off. But they actually had to like push on his forehead to cut that bandage loose because it was so tight. And I remember that scream quite well. He was not very happy about that. Um, and of course we’re holding him down as she’s doing this. So it’s, it’s not, you know, as a mom as well, you, you’ve never manhandled your child like that, you know, so it’s. You weren’t used to that kind of, but after that compression bandage came off, he was, I mean the swelling, it was amazing how he just looked, he really did bounce back very quickly and then we got to see for the first time, which something is, I wasn’t the recipient, I was just the mom, but you could actually see these Implants in his head and you can’t get a fright the first time because he’s still so little. Um, and here you have these, is his head going to look like that forever? Because they’ve got these big implants sticking out on the sides, you know? Which today you, you can’t even see them because he’s grown up and his head’s shape has changed and all of that. Yeah. But, but it was such a like, whoa. And the, the pen drawings that they do to placement and all of that, you know, like. Yeah, you see, so it was, it was something that she, I remember the surgeon telling us, you’re going to see the marker, don’t get a fright, I did write on him, so she prepared us for all of that. And we, I know on the same, on a lot of social media stuff, parents often then when they see it for the first time say, but the, but they’re not symmetrical. They don’t look like they’re in the same place. And I obviously asked this question and was told, well, often it’s not because of the anatomy. So Oli’s is quite symmetrical. It’s, it’s pretty perfect, I would say. Um, and, but, but it’s still, it’s a very strange thing. I remember having a few tears about the fact that his head would never look the same. Which, again, it’s such a silly thing. But you know, your baby is born and your baby is so perfect. And now I’m gonna go put you under this long surgery and you’re gonna come out and your head shape is different, which is so trivial. I completely understand that, but it is a, a feeling I kind of went through, um, of, oh, your, your head is different now. You’re not the same way you were when you were born in that first moment when I held you. Um, so yeah, but that’s.

Karen: I never thought of that. I mean, I have adult clients who have had surgical scars that, you know, the ones that go like this and everybody has different, you know, and it’s quite long, quite deep, and the same on both sides. And he had a very thick scar. About this wide and there’s no hair. So if he cuts his hair short you can see the scar.

Bianka: Mm-hmm. It bothers him so much. In fact, when he had his first session with me, all he wanted to talk about was whether he could get a hair transplant. On the scar. And, you know, would his surgeon allow it? And I said, I don’t know. I’m not a surgeon. You know, you can ask. But it bothered him so much and it would bother me too if I was a guy and I had short hair. Um, it doesn’t. It’s interesting you mention that because, um, I think there is an element of going through a grieving process. There’s nothing to apologize for. Absolutely nothing to feel badly about. You’ve got a baby and your baby’s going in somewhere and they’re coming out and they’re looking different and you wonder how that’s going to impact the future, you wonder You know, and, and it’s, it’s a valid concern because I do have some sensitivity where the magnet is. Um, and I think that’s just my, my, my body. Not everybody has this, but you know, I, um. You know, I have difficulty equalizing pressure in my ears.

Bianka: Okay.

Karen: And so I’m more sensitive where the scar tissue is and where the operation has taken out some of that bone. You get the electrode in there and I’m more sensitive. You know, I don’t like people putting pressure on it. And the only thing that gets rid of that discomfort is when I have a real intense And I don’t mean intense in like it. No. Um, I go to an osteopath and, uh, a kinesi- kinesiologist, um, who does, uh, Uh, sacro cranial therapy and he’s so gentle.

Bianka: Yes.

Karen: Gentle and he just, you know, releases, puts my head back on its axis, proper axis and Gets the bones connecting probably. I have no idea what he’s talking about. I’m telling you, when he’s done, My ears feel full, they feel normal, um, that I can put as much pressure on it and it doesn’t bother me and um, and I just, and my bite is different.

Bianka: Yes

Karen: Yes, yeah. My bite is, you know, nice and solid and where it’s supposed to be.

Bianka: Yes.

Karen: And um, but this is just me. This is just me. This is what I do and it’s a lifesaver for me because it’s discomfort. Uh, it was either bug my surgeon all the time and get tubes, you know, which you don’t want to get when you have an implant. Um, uh, you know, and when I found my, my osteopath, I was so, I was in tears. I was so grateful because I know, okay, well, if it starts getting, um, my ears feels plugged. I’m not gonna worry about it because I know I can get relief. Yes. So, my life goes on as is. Like, I don’t have to be Okay, it’s just time for, you know, have an appointment and boom, boom. And he gives me a lot of exercises, you know, to do. But, um… Yeah, it’s just, I have psoriasis on my scar. So when you have psoriasis, when you get a scar, it becomes psoriasis. So it’s like. It’s itchy and I try to keep that part of the skin, you know, well looked after, but it’s, it’s hard. So these are changes that Come with the price of, you know, wanting to hear better. But I’m telling you, oh, if knowing what I, if I would have known that What I know now, back then, uh, you know, uh, would you do it again? Would you do it again? Would you, if you were in the same situation, you were pre-implant and you knew you had to go through this, you know, Yeah, hint them.

Bianka: Yeah.

Karen: It’s so much easier to hear with the implant. Before it was so much struggle and now it’s like, again, the body language, right? And I never thought I would ever get to that point. Never.

Bianka: And amazing. And so those finer little things like the scars, like the, the discomfort, you know, the, it’s all. It’s all worth it in the end. And in Oli’s case, he doesn’t have this scar, but he does have the scar above his ear. So it’s funny that you mention this because I have mentioned this recently because he wants his hair a little bit shorter and I… There is a little bit of a, we’re gonna see the scars now, um, when he cuts his hair shorter. And it’s not, it doesn’t bother him in the slightest. I think you know, there’s an, it’s obviously a bit of a, whatever, if I’m still reacting to it, I haven’t completely gotten over it because there was a lot of trauma and Involved in all of this, because as you said, the grief was, I never thought we were going to be going through this journey with my child. And that is not a good or a bad thing. Um, it just is what it is. So the one the reason I said I wish we could have stayed in hospital was so the Monday the compression stock bandage came off and then we went back to Hopefield which is two hours from the surgeon. She said he looks great. No worries. I’ll see you again in a week. So we were supposed to see her the following Monday. That Thursday, sorry, and at this point, no blood had come out of his ears like we’d been warned or his nose or his mouth. He was just great. The only thing that she did caution was because it’s a cochlear implant, there’s a higher, there’s an increased risk of meningitis. So any new parent doesn’t want to hear anything about meningitis, but anyway. You know, it, it, she has to tell us what the.

Karen: Did you have the vaccine before?

Bianka: Yeah, we did. Yeah. Okay. So we, you know, we’re still told, you know, that you need to. It’s the worst case scenario ultimately is what it is. You know, you also sign that he, so we, that’s Thursday evening around twelve o’clock. He woke up for a feed. And he, he was shivering. He was like, like ice cold, like a opposite. And I was like, what is going on? So I phoned my mom to come from her house and he’s now. Almost inconsolable, he’s starting to cry and my mom walks in and she takes him from me because I’ve now phoned the surgeon. I think we phoned her at one o’clock in the morning. And she said, pack your stuff and come back right now. so my husband’s packing i’m helping him pack my mom’s holding Oli and all of a sudden he just vomits and it’s just blood and it’s all this gunk. And now in hindsight, I realized he was getting rid of everything that was obviously draining. But in that moment, she says, as long as he’s not throwing up, I’m sure it’s fine. So he’s now thrown up. So we’re like, we’ve got to get to the hospital now. We drive all the way through, but now it’s COVID, so at first they won’t let us in the hospital because we haven’t had a COVID test. And we’re saying we have, we’ve just had surgery. We haven’t been in contact with anyone outside who hasn’t been tested and the surgeons asking them, please let them in. So anyway, we get in. And long story short, but he was, he had his blood tested and then he slept for a good four hours and he was completely fine. So it was really just that vomiting up all of that stuff. Me having a complete panic attack, but, and my husband as well. But had we been in the hospital a little bit longer, it would have been It’s not a good or bad thing because you want to get out of the hospital too, but I understand how you say you were a princess. I could understand the princess treatment of any little thing that was going wrong, being able to question that. I thank the fact that our surgeon was our surgeon and that she would allow us to phone, um, at any time of day and ask questions like that. So

Karen: …that’s amazing. Yes. I would have felt a whole lot better if I would have had my surgeon and dial, but she’s, she said, I have in life. No, no, she didn’t say that. She just. She’s got other patients to see, right? And I knew that, but you know, it’s just every little thing, it was just It was nice to have that comfort. It really was. And yeah, the swallowing of the blood and if you swallow a lot of it, it makes you feel sick and nauseous and you’re shaky. Yeah, yeah. It just brings back memories. We need to talk about that. And, but then, you know, you hear stories of other people getting implants and they’re like, yeah, yeah, I went back to work the next day and it was just aces and I’m just like. You know, and that’s really good for you. Like, it’s like with anything in life, you know, if you’re pregnancy even. Like, I was sick the entire time.

Bianka: That’s true.

Karen: And there are other women who are just, oh, I love being pregnant. And they glow. I would not want one of those. And uh, happy, happy for them and happy for you. But yeah, it’s, it’s, it’s really hard because for a surgeon, they want to be there for us. They really, really do. But, you know, it’s the hospital system, it’s the administration, they’re demanding everybody to be.

Bianka: And again, our situation was so different being in COVID. So there was so much unknown from the medical profession. They were trying to do everything the best that they could, you know, and I think. They really did. Yeah. Because they had no idea at that point. That was May 2020. So that’s only three months into COVID. At that point, we had no idea what was happening. So I think it’s such a different story when you were able to hear, because of course you had the one, your hearing aid, and then the amazing residual hearing in the ear. We noticed very much with Oli. The difference in him in that month between our, his operation and then of course the activation or the switch on because he didn’t have his hearing aids on. So he didn’t have access to sound in that month, which was. It’s, we still continued to talk, you know, at this point we’d started AVT as well. So you, you do the same thing as what you’ve always done, but it was, It’s different. And then you, you have moments of like, did he hear that? You know, like you still have those moments, even though, you know, it’s impossible because he’s, he’s not wearing.

Karen: Or yes.

Bianka: Or, do you tell? Maybe not. Like, yeah. Now, so I firmly believe he, but he has to hear in a different way. He hears in a different way to us. Um, that is whatever that is, but he does definitely in that moment without his technology on his side, he was still hearing and communicating and speaking with us. And yes, we did use some sign at that point too, but it was more than that. You know, when we spoke about that, that in the first episode about the idea when he, no, sorry, the second one about having his Hearing aids switched on for the first time and how all of a sudden he wasn’t looking through us anymore, but he was sort of just looking at us and you used the beautiful word said he was seeing us and listening to us in a whole new dimension. And that didn’t go away in that month that he didn’t have access to sound. That was still there. You know, he, it was like. It was different, but it was still there. And is it the three months, what, four months of AVT we’d done before that and all the extra time and In a moment, both Daniel and I were at home the whole time during this, he had us at our, his beck and call twenty-four hours a day. So there was a lot of, but it was interesting. He’s never tensed up as much as he did before he got his hearing aids, even in that month without access to sound. So mom and dad were quite tense in that period because we also had a major insurance fight. Our bilateral cochlear implantation was approved. He went for it. And then they let us know when they needed to pay the, we’ve got a private company that sources Cochlear into South Africa. Um, they weren’t going to pay them because it hadn’t been approved. And we’re like, well, it’s too late now. He’s got the implants, you know, in him. And it was COVID and all of our, they don’t keep stock here. So all the activation kits have to be sent from England. There were only one flight a week from England to South Africa. And yeah, eventually we actually got the money together. As you know, a large amount of money from my mom and she, we paid them so that we could get the devices. Uh, eventually the medical aid came through and did it all, but it was. We had, my mom had a courier company help to try and get as soon as the plane landed in Joburg to get them to us right away in Cape Town. And so the switch on was delayed by about a week or activation was delayed about a week because of. All that stuff that was still going on in the background.

Karen: I, you know, you know what really touches me? That story really touches me in such a deep and profound way. Because… I heard my parents, I’ve, I’ve heard so many parents but grandparents, but especially, I’ve had grandparents say to me, they look at the child and wonder, they’re in a therapy session with me and and, um. You know, they’re going through the cochlear implant process and, you know, trying to get candidacy and they see that their child or their grandchild is not, you know, not responding to certain sounds that they can hear. And the thing that comes out of their mouth is if I could only give him my ears. And every time I hear that, I start bursting out into tears. And it’s, and it’s, you know, and some people may find offense with that. Nothing wrong with my child. Not about that. It’s just.

Bianka: Yes, so.

Karen: No, it’s about, you know, you want. To have your child experience this, the world of sound that you’re fully immersed in, you’re bathed in. And, um, and it’s, it’s, it’s hard, you know, for, for grandparents and for parents and they want so much the best for their children. My mom used to ask me, can you hate me for making you deaf? And I said, well, first of all, you didn’t make me deaf. It was the way I was born. It was the way I’m supposed to be here and I don’t know any differently. I just like the way I hear right now and keep these things on.

Bianka: Yes, exactly.

Karen: I remember telling her that and she was just, you know, and that’s such a, um, it’s a hard question to ask for a parent to ask a child, but that’s what parents go through. And I keep… I understand that and it’s just like, hey, you know, hey, look, I’m grateful that you You went through this. You know, your grandparents, you know, putting together their financial resources to make something happen for you and it’s incredible what they’re worth it.

Bianka: And I think, you know, two things on that is one that we, we still don’t know the cause of on his hearing loss, which we never will. And that’s fine. We did have Connexin 26 um, tested in South Africa. At the time of the surgery and CMV as well. And you know, all of those were came back inconclusive and negative. So, which is great, but. I remember very much being like, was it because I was so hardheaded and wanted a natural birth and laboured so long in the middle of labour, did I damage his ear? You know, I went through. Everything, every possible anti natal vitamins, you know, I was really sick between this week and this week. Um, you know, I was on progesterone at some point. Is it, and you absolutely go through that. Is it my fault thing? Um, but yeah, And then you look at him today and I truly, my belief system is that, you know, he’s here to do the journey that he’s also supposed to do and I can see that. Would I want him to, I can’t even imagine him without his cochlear implants. And again, my husband and I often will look at kids photos of babies, like toddlers between six months, twelve months. And then you’re like, where’s their cochlear implants? But you know, not every single child is deaf just because, but there’s something missing.

Karen: Yeah.

Bianka: He had this bald head, um, until about fourteen months old, so it’s, and the Ubuntu part of my, I mean, my mother was She was amazing. My mom was from the first, from the diagnosis where we spoke about in episode one. They were two hours away. It was eight o’clock at night when we left the hearing centre and I phoned her and she and my stepdad packed up their stuff and they drove through. And they stayed with us and she went to almost every single appointment until the surgery. Every single audiology, every single meeting our AVT, the chat team, Carel du Toit, she was there for all of those appointments. Um, and yeah, today, yeah, I don’t know what to say. So I always, and her and, her and Oli have such an amazing bond and I really think that they were there for us for those first two years of life. Um,

Karen: Yeah,

Bianka: …for him, that was just incredible.

Karen: I, I, yeah, I, I, I know what my mom went through and It’s, and I, I see what parents go through and I’m just in awe. And, uh, whenever my, my mom or my dad were in the hospital, I was there like they were for me. And I think I was there too much because I was probably getting on the nerves. I think they were more concerned about making sure that I was looking after myself because caregivers often don’t look after themselves and we should talk about that too. Yes. You know, they asked me like, you know, you don’t have to stay here. You can go home. And I said, I can’t. You don’t understand. I can’t. Because my parents did this, this, this, this for me. I, I am, I am deaf. I, I have. I can’t hear anything without my hearing technology. And um, my parents back in the 70s got me to where I am right now. And you don’t know how much it took for them to get me to where I am. And I need to give back to them. You know? And uh, it’s just, I was there. And they were just okay, you know, you know, you’re okay. Your parents, you’ve done a lot for them. And I said, I know, what? I need to do it. And I think a lot of parents, um, I can understand why they would feel a little bit, you know, oh, it’s my fault. It’s all my this, all my that. You know what? We don’t know any differently, number one. We are so happy because you spend a lot of time playing with us, hugging us, loving us. And doing everything. We, we know what you’re doing, but we often don’t remember. And, um, I always, and the more, it’s just, I don’t know.

Bianka: It’s what you know, and I think that was the best thing that anyone could ever say to me at that time. Yes, it was still very, at the initial diagnosis and in those first, before the implants, I would almost say. He doesn’t know any different. This is his normal. And so all we’re going to do is make it more colourful. I mean, as you, once he got those cochlear implants and. And we, and we’ll, we’ll talk all about, I think the activation and the way forward next time, but we really got to, he never fought. He never fought having to wear them. You know, I know that we would be totally, this would be a totally different journey, a totally different story if we had a child who didn’t want to wear them, but that wasn’t the case. Um, yeah. And so, yes, this is his new normal, and he hears however he hears, because I don’t know actually how he hears, but he… Yeah, it’s incredible and I think, thank you for saying that again and I think it’s something that new parents really have to hear again is that This is, this is what you know, and you are so grateful for all that is done as well. Um.

Karen: It’s good. It’s really, really good. And, and um, you know, I can’t We’re okay if you’re okay.

Bianka: Yes. And I think my mom was trying to reiterate to us the whole time because she was, like you just said, she was very concerned about me the whole time because I was. I was, you know, that, that evening after we got the diagnosis in the next morning, when we went back for a ABR. I was so tense that he wouldn’t actually fall asleep. So my mom actually, she sat with him. She sat and she did the first ABR after the diagnosis to confirm it. So I have photos. And the photos are so funny because they are very blurry and that’s a very beautiful, apt, real life, realistic way of how I felt in that moment. So it’s a blurry photo of my mom holding Oli while he’s got all his ABR. Wires on him. And that’s, that’s how that moment was. And she said to me then as well, take photos. You have to remember how far you’ve come. Right now this feels gut-wrenching, but look at where we are five years later. It’s… Incredible. So. So yeah, so we, funny story, but when I was pregnant with Oli, I bounced on a ball. You know those big yoga balls? The entire practice. It was the only thing that really helped my hips feel great. And in hindsight, knowing now that he couldn’t hear is he never reacted to like when I watch loud noises, you know, I’ve often seen other friends who are pregnant and if there’s a loud noise, the the baby inside their tummy will jump or they will, you know, they’ll, they can actually, I don’t know what they’ve described. If it’s the mom getting a fright and the baby getting a fright, but. Oli would stay consistent or making them listen to music with heads, you know, whatever it is. We, we didn’t do any of that. And Oli never really reacted to anything like that. But bouncing on the ball was his favourite thing. If I used to sit and bounce on the ball, he would just… Start to relax. So when I had him, the only thing that would put him to sleep for the first two years of his life Was getting on, getting on the yoga ball and sitting there and bouncing like this and he would go to sleep. And it’s so funny because today, even if he’s upset, then he’ll say. He wants to sit on my lap while I sit on the ball and he has his own little toy. And I often think of that for me as confirmation that, you know, his hearing loss happened in utero. It wasn’t necessarily because I did go through the birth thing a lot thinking it was the birth, which I know it wasn’t. But he did also receive antibiotics right after birth and it was an ototoxic antibiotic. Um, but it was one dose and he was forty-one weeks and six days already when he was born. So it wasn’t a… Anyway, it doesn’t matter. But for me, that’s, that comforts me that we have, he had, he loved that movement already and he’s craved that sensory input like that. And he’s a proprio-seeking child today still more than anything else. So it was, yeah, I don’t know why I thought of that. That was my mom sat on the ball that day and put him to sleep for his second ABR to confirm his diagnosis. Yeah.

Karen: That’s called being responsive to your child. Being responsive, being looking and observing and thinking about those moments, those things that you’re doing that is Causing the child or helping the child to react in a certain behaviour or to… You know, um, we always want to heighten that parent responsiveness as part of the therapy. In what way? When you have a diagnosis of being, yeah, for any type of degree, unilateral, um, bilateral, any type of hearing difference. Um, parents think the logical thing, which is my child is not getting any benefit from any auditory input. So what do they do?

Bianka: Stop talking.

Karen: Stopped talking. And I don’t blame them. Like that, that makes logical sense to me. And um, you know, This is where we have to get back into and this is why it’s so important to get to parents. Oh gosh, I sound like I’m talking like a cult leader.

Bianka: No, no, no.

Karen: What? If parents want their children to, to benefit from hearing technology and to learn to listening talk, we need to get to them, um, as quickly as possible so that we Can let parents understand that we have to continue that input that you think your child is not getting um, because it, it does Ah, it does make a difference. It does. And so my takeaway from this episode is what you said again. Is when Oli got his hearing aids and it couldn’t have been that much that he could hear with the implants, but with the hearing aid, but he heard something. And that was a sensory input that he could grab and hold on to and help him connect. And we’re talking so much about connection in our episodes and, you know, people connect with their children in different ways and, you know, they use visual, they use tactile. Oli really liked the bouncing. That’s being responsive. That’s giving him more. He liked it. He bounced. He liked it. Then you give him more. You respond. as a parent to this and so um, I just was looking through um, a book that a chapter that I co-wrote on um, coaching parents and caregivers in um, auditory verbal therapy and there was a quote that I loved so much that Doreen Pollack, one of the pioneers of AVT, auditory verbal therapy, Basically said, she said, Doreen Pollock, a pioneer of AVT, urged Practitioners to coach parents in creating the right learning environment, one in which the child who is deaf or hard of hearing could be bathed. Bathe. In sound. Surrounded by people. I’d like to add people who the baby loves.

Bianka: Yes.

Karen: And who loves the baby. But surrounded by loved ones who believe he, she, or they could hear. And expect the child to listen and respond in the relevant and meaningful context of daily experiences. And Yes, I know, you know, there are some times when the baby can’t hear enough, so if listening in spoken language is a desired outcome, you, we need to get the hearing piece You know, sort it out. And we do that with hearing aids. We do that with cochlear implants. We might do that with auditory brainstem implants. Um, and, and once we get that hearing technology, before we get that hearing technology, because we have to get the parents believing again, we need to grab onto that hope, right? And so this is another quote, um, by Silverman. And these guys are, these pioneers are back in the 60s, which is so incredible, so forward thinking. They said they, we recognize, recognizing that sound education for the child who is deaf or hard of hearing is much an attitude. As it is an atmosphere. So you have to, when you invest your time and your energy as parents, your financial resources, Um, or that of the insurance company, well, it’s your financial, you hear us this, right?

Bianka: Correct, yeah.

Karen: Um, you, you, you, You really have to change your attitude about from a child who can’t hear to a child who Can enroll here. And unless they get to the point where, you know, there’s and there’s really nothing we can do. And then at this point, we have to find. An alternative way to connect and to communicate with the world. And, and, and it’s just as beautiful, you know. Um, but I really love this quote. And I think this is what, if you want listening in spoken language for your child, um, then it’s about, it’s about getting an attitude adjustment. And I know now that I’m grown up and I’m a professional and I’ve seen lots of parents, I know how hard it is. Wow. To, to drive on to that. It’s so hard. But if you can, then it’s better for us. And this is a lifelong thing and you have to enjoy. Still, there’s love, there’s attitude, there’s responsibility in the children that we work with because eventually they’re gonna have to look after their own hearing.

Bianka: Yes, this is true.

Karen: Yeah.

Bianka: Well, and I think that’s such a lovely full circle ending to today’s episode about We started with body language and, and you, you, you summed it up so beautifully in the sense that it is all about connection and connection may not look exactly. It’s not just about the spoken word as well, but it’s also about looking holistically at how the, your child is. Experiencing life with or without hearing technology. Thank you very much. And I look forward to chatting about our activation experiences in the next episode.

Karen: See you soon.

Bianka: So that’s it for today’s episode of Ubuntu, hearing, communication, language, and connection. Thanks for spending time with us.

Karen: We hope our conversation sparked new ideas and gave you some comfort or simply made you feel connected.

Bianka: We’d love to hear your story. Reach out, share your experiences, and keep the conversation going.

Karen: Remember, we’re just sharing our perspectives and our respective journeys. There’s no right or wrong path. Only the one that’s right for you.

Bianka: Until next time, take care and stay curious.

We used an online AI transcription tool to transcribe the video for you – errors may occur. 

Bianka: 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 McIver-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.

Bianka: We’re so glad you’re here. 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

Bianka: All right, welcome to another episode of Ubuntu. Hearing, language, communication, and connection. And we are so excited to sit down and chat with one another and chat with you all today. Hi, Karen. Hi, how are you?

Karen: It’s good to see you. Sure. And to see everybody else too, so welcome. Thank you very much.

Bianka: So Karen, I know that we got to speak last time so much about the beginning part of our journey and I think today we’ll just kind of continue that and see where it takes us as well. And I think what makes this podcast so unique is that you and I can give an experience of Myself as a mother who has a child, I made the decision or the choice, I suppose, with my husband to implant our son and go through this journey. And then you as an adult who now has a cochlear implant as well.

Karen: As well as, yeah. So many families. I’m excited to share that, um, process because I learned a lot from parents, um, about what it’s like to get a cochlear implant before I got mine. And boy, was it a lot of learning. So I would love to open this up by hearing your story first.

Bianka: Okay. We can absolutely do that. So I think that. I was kind of thinking about sort of where we didn’t really chat much about the hearing aid trial that we sort of started at because obviously in every country I know the rules are different, insurance companies are also very different as far as having a hearing aid trial. So we were very lucky in that the audiologist that we started with did give us a, a set of hearing aids to use. So we didn’t actually have to purchase them, which I thought was standard, but I have since learned that many families actually have to purchase hearing aids before cochlear implants, which that was a bit of a shock because that’s another expense that we thankfully didn’t have to factor in. Yeah. So we were very lucky in that Oli did receive access to sound with the hearing aids, so When we switched them on, we got to see that little face, those big eyes that just turned when he got to hear it was, yeah, it was An unbelievable experience, definitely, for sure.

Karen: What did he hear with his hearing aids?

Bianka: We never did another audiogram, so I don’t actually know how much access he had, to be very honest. He was got the hearing aids at the end of February and then we went into lockdown. Um, because it was COVID time.

Karen: Yeah.

Bianka: Did I loose you? Oh, there we go. We’ve just had a bit of a frozen situation here. So we went into lockdown and then the only time that we really went back to the audiologist was all masked up. So that we could just get new earmolds made every two weeks because who knew a baby’s ears grew so much, so quickly?

Karen: I hear that!

Bianka: So I will say that the hearing aid, the experience of that switching those hearing aids on the first time was unbelievable. It was, um, I mean we just all cried in the room and he just looked at us with these big eyes and he His whole, like, being softened, if I can put it that way. Um… I know that we haven’t often spoken a lot about what I do outside of this world of hearing, but in my other profession, I work a lot with children, and one of the biggest things that I saw with Oli after he had access to sound, even with hearing aids, was his toes relaxed and it was so unbelievable when his sound he had sound his toes relaxed and then in the morning when he’d wake up his toes would be all curled again And that’s the fight or flight response. That’s a very like stressed out response to be like this versus you relax.

Karen: Yeah. So an interesting observation. That’s amazing because I remember getting fitted with my first set of hearing aids because I was four years old at the time. And because I could hear some music, I, my mom had me and baton, which is a music ruling, you have a baton in your toilet and And I could hear some, something I just didn’t really, I couldn’t connect it with what was going around me. What was going on around me. So I, I knew that I was expected to go to the dance studio and match all the movements, all the steps, all the twirls that all the other kids in my class did. And um, when I, the day that I got my hearing aid fitted to me for the first time, Was actually the day that my, uh, the rehearsal for the baton year-end, um, celebration would be. And, um, So I remember getting fitted and seeing the room glow in a golden yellow colour because for me Sound was colour. Like it just made the world glow in a richer due of whatever colour that was around me.

Bianka: Yes.

Karen: And um, yeah, and it was just, I remember being in awe. Um, and then running outside. With my mom, and my mom had, back in those days, an old granny plastic cap that Would keep the hearing aids, you know, dry from the rain. Because it was raining hard that day. And I could hear my mom’s crinkling sounds. Of the, the sound of the plastic being touched as my mother was, you know, what’s going on, Karen? And then we got on to the subway. I do not remember the subway. My mother does because apparently I screamed the whole way. And I must have been scared. I don’t know. But, um, I screamed the whole way, then got off the subway and walked to our car. And our car was this, um, An old car, I guess it was, um. Ford, like one of the big, big cars. Beautiful, shiny, teal, blue car with blue interior leather. And my mother said, and it was just, it just seemed that every colour was glowing. And um, and then my mom said that on the way home, I was cooing and then I would laugh and then I would say something else and then I would laugh and laugh and laugh because it was the first time I could hear myself. Um, but the most amazing moment of that day for me personally was, um, being at the rehearsal, getting set up. And then all of a sudden the music to our dance started. And it was the first time I heard the singer and it was the most beautiful song and it was called raindrops falling on my head. (singing) Rain drops are falling on my head. (singing) And I just was Wow. And I just stood looking around while everybody else is dancing. And I just stood there. I was just like, huh? So excited and just was so happy and moving around and all the mothers in the audience, were crying. Because they had never seen me. They knew that I had gotten hearing aids that day and they, they could see. You know, that look of wonder that you were describing with Oli. And I bet you I looked a lot more relaxed, too. And you know, I have a picture of me in my dance costume with the baton, a picture of me before I got the hearing aids and a picture of me after. And you can so see the difference. The whole body is relaxed, as you said, and is more in my face. You can just tell. That I am more connected. The life around me and I can’t describe it. And so one of my first lessons to interventionists when I’m training them to do the work that we do Is it’s not about looking at what the child can or cannot hear. It’s about looking at the behaviour of the child. What? They got their hearing technology and looking at their body language, looking at their, their being, their, their essence, how do they eat, drink, look at, feel, walk, life after they get fitted with hearing technology. And if you see the shoulders are a lot more relaxed, And joints? A lot more relaxed. Do you know? You’ve got some good outcomes. Link(fix there).

Bianka: And, and that is such a beautiful, I think such an important note, I think for maybe more practitioners and practitioners, but parents also to realize is that body language, because it, if I think back now, As soon as he had a bit more access to sound, his interactions with us changed so much. Even at three months old, those eyes were so big and Previously, I want to say that it was almost like he was looking through us, where now he was just sort of, he was really, he wasn’t looking, I mean, he was still standing our face and he’s only, he couldn’t, you know what you mean?

Karen: It’s like, he’s looking through you because it’s just, He’s seeing you for the first time. Different dimension, really.

Bianka: Yeah, so it was, it was It was really lovely. I think, I think, um, one of the things that we often, my husband and I, cause my, my husband was with me, um, we had the audiologist and my mom was there as well. Thankfully she was the one going, You need to take photos of this and you need to take videos of this so you can see how far you’ve come one day. Um, because we were both just crying through those days of appointments at that time. We, as she switched on the hearing aids, she did one side at a time. So his right ear was severe, where his left ear was pretty much profound and there was even no reaction. In the initial testing so they put right here on first and um, the one of the strange things that we didn’t realize at the time but only realized a little bit afterwards was How much the audiologist was speaking, um, when the switch on happened. So, and I know that that was part of her job, but in hindsight, both Daniel and I were like, If he heard her voice, her voice was the first voice he heard, and as parents we were feeling a bit, um, vulnerable about that fact, if I can put it that way. Um, and our, and our cochlea switch on was very, very different. Um, but it was, it was just, I think these are the feelings you go through because you are feeling so has my son ever heard me say, I love you. Have they ever heard any song I’ve ever sung to them? And now he’s got this access to sound, but I, my voice was not the first voice he heard. Um, so it was a bit of a mixed feeling, uh, situation that we went through, if I can put it that way.

Karen: I’m so glad you talked about it. Um, because I think, you know, um, I think that’s a very, very valid point. And I think audiologists, because we’re so excited about, you know, um, getting is this child detecting sound and we know that we we know which sounds to produce and we know what frequency range these sounds are and we want to check their auditory access, but that’s a really good point because, um, That sort of happened to me when I got my cochlear implant too. I’ll get to there in a minute. But, um, uh, I went to an activation. With one of my recently year and a half now. But when she was seven months old, she got her implant activated. Which is great for Toronto, Canada. And her parents, um, I told her parents, you know, Um, I want you to think about what you want to say to your daughter, you know, the first time she is activated. And they said, oh, no, no, no, we don’t want to talk. I said, no, no, you do the talking. And, um, and I… I kept saying, why? Well, you know, our voice is not very strong. Um, and this is the feeling that they came into because they both had hearing loss as well. And they used sign language to communicate and they were a little bit shy about the quality of their speech. To me, I love everybody, no matter what it is. And if you are constantly talking to your baby, which they were, While she had her hearing aids on, I said, your voice is the most familiar and the most precious to her. Please don’t put that on us because we don’t have that connection. And I’m like, you think so? You think so? And so I had to, to convince them, sell them on it. Um, and then I talked to them about it again and the audiologist that works with, that works with the family said, Um, was also very careful about that and she said, you know, I want you to be, you are going to be the first voice. That your baby says, so who’s going to speak first? And the parents were like, we want Karen to, and I just turned around and I said to the audiologist, please don’t, please don’t. And she says, I hear you Karen. And so we just waited. We just waited. And when she was turned on, she had already heard The sound of the environment and her eyes just went, her head stopped. And I looked expectantly as a therapist.

Bianka: Mm-hmm.

Karen: And they called out her name and um, the father said something in his native language was French and Hebrew and, and, uh, I just was just, and she was just smiling and looking and localizing and. Localizing meaning, tuning to his, his voice. And, um, and then the mother would start talking and, you know, and then… And then they were like, can I say something? And I was like, okay, now I can talk. And they said, okay, now I can talk. And then, you know, the child looked over at me and I said, hi, baby girl. And, you know, and, and that was that, you know, but for me that first moment is so precious and I think it should be the parents.

Bianka: Yeah.

Karen: So, yeah, that’s another, um, really important piece of wisdom, I think, that you just shared there, you know.

Bianka: And I, and I will say that I completely understand the absolute excitement, the pure heart and joy that this audiologist was in the journey with us. This is, you know, but it’s just something noticed. Um, So, and after that, interestingly enough, wearing the hearing aids is a whole different ball game to cochlear implants now that we’re on this side of the journey. Um, breastfeeding with hearing aids is a whole different journey. Just because they constantly make that noise when there’s, um, when the baby’s lying down and feeding. So that was, but we had this ritual every morning because obviously we’re in lockdown. My husband wasn’t working. I wasn’t working with the three of us. And we would sit down and we put the hearing aids on and then we’d click them on at the same time. And it was like switch on of the hearing aids every single morning. When they went on, his face would do the same thing. He would just get so happy and just look around and So we made that for it over and over again every morning that we put them on. So it was um, yeah, and then Once we had our hearing aids, because we were in lockdown, we were told that once he’s six months old, then we can see an ENT and then we can look and see if he is a candidate for cochlear implants. So what happened in the middle of COVID was obviously, I think we’re beginning to panic a little bit because we had no idea what was going to happen. This was March, you know.

Karen: And, I can’t imagine doing this during COVID. Wow. Yeah.

Bianka: So thankfully there was another little mom who I spoke about on the last podcast as well, who’s Oli and her, her daughter and Oli had the same due date and she came two weeks before Oli, a month before Oli. So two weeks before the due date and Oli. And she was also diagnosed, uh, profound bilateral hearing loss. And she, she and I were the ones doing all the calls to overseas to find out. So what’s the optimal age to actually implant and what’s happening. And we were both the same cochlear implant team and they then ultimately made the decision to fast forward paediatric implantation and put adult implantation on hold. So, we were still with another audiologist. And you know how this goes. My mom knew someone whose friend’s son was implanted and that mom reached out to me and she said, there’s only one surgeon who can do the operation. You need to go and meet her. She’s who did our son. So we lived two hours outside of Cape Town at that time so every time we came for appointments we had to really try and organize everything and Oli hated the car so it was always quite a stressful packing up and going. So we made an appointment with this. Uh, ENT absolutely loved her and but what that meant was we could not stay without audiologist. We had to, cause it was a completely different, um, team and also a different brand. So in the time, from the time that we had his testing done at six months. And I got that phone call in the ward saying, okay, it’s been scheduled for two weeks from now. We had not even met our audiologist yet. She then drove the two hours from where she lived to where we were to meet us for the first time a week before the surgery. Sit with us. I know, an absolute angel. She sat with us. She explained everything. She bought the cochlea. She bought the internal device. She met Oli. She… It was like just, it was like this, just meeting a friend and just to explain the whole process to us. The surgeon was also phenomenal. She, um, I think must have studied everything. So I’d get these messages like. Five o’clock in the morning and then she’d say, please take a photo of the outside of his ears and then I’d do that and he didn’t have much hair at that point so she could see all the bones and so on. And she would ask all these questions and so it felt like we were, we were going in ready to do this, if I can put it that way. Um.

Karen: And then the morning she involved you in the process. They involved you in the process by including you in, um, Getting an idea of what she’s looking at.

Bianka: Yes.

Karen: For example, taking a picture of his ears. She’d do that. Why would she do that?

Bianka: No idea.

Karen: Well, then a parent might ask. Did you ask your surgeon why she would do that?

Bianka: I asked her and she said something about the bones. Um, you know, when, how much went in, I have no idea, but I, I don’t, she obviously was looking at, I believe it’s the temporal bone that she was, um, Looking at and just looking at where she was going to place the implant and she at one point even had me measure something. So, you know, My measurement, obviously she redid all of that. when, she got into theatre. But it was such a, like you said, she was involved. So… Because ultimately after that phone call is saying it’s in two weeks, like I said last time, we definitely had moments of like, okay, now it’s actually happening. When he was three months old and we’re being told he could potentially be a candidate and then we’ll do a surgery and give him a cochlear implant. You’re going, it’s in the future. Nothing to worry about. Now that. Well, there’s something to worry about. So we, we left very early that morning to be at the hospital at six, so we had to leave at four in the morning to get up at six. And I will say I feel like the most stressful part of that entire operation is withholding breast milk from a six month old baby. Who’s used to being able to feed on demand. That’s probably the most stressful. So, yeah. You know, he’s used to being next to me and when he’s next to me, he can feed whenever he wants. So that was… That was quite difficult. And then obviously because it was COVID, I had to go into the hospital on my own. My husband wasn’t allowed to come with me. Yeah. So we, we went in, um, the, the hospitals were empty. It was a Saturday morning and the surgeon was quite concerned again because we didn’t know the repercussions of COVID. This is May 2020. It wasn’t even bad yet, you know, in that sense. So she had actually rented, she was using her day hospital, but she’d rented a separate cleaning team to first go in there and clean and make sure everything was absolutely Yeah. So, the… I think that, oh, that he didn’t, my, Oli didn’t ever take a dummy, um, a pacifier. And that day, that’s what I was trying and finally he took to it. And then as we were going into pre-op, one of the nurses obviously thought she was going to be funny. And she walked up to him and she pulled the dummy out of his mouth. And he, and to pull it out and, you know, play a game. And he started screaming. And so I unfortunately couldn’t settle him until we stepped into the theatre and I got to hold him and. It’s not, as any parent who’s been through this, not just with cochlear implants, watching your child sort of go limp in your arms is not a fun experience. Um, and this, I was, at that point, I allowed myself to cry because now he’s okay and I can cry. And the surgeon wanted to give you a hug and she’s like, I can’t, I’m already scrapped you, you know, but I’ll see you on the other side. And as I walked out because my husband Daniel waited for me in the parking lot and I was just going to be in the parking lot with him. Uh, the audiologist arrived and so she actually was with us. She said a prayer with us and. She went into the theatre and she stayed there and between her and the anaesthesiologist they actually sent us messages about every hour. So he was Bilateral implantation was almost eight hours. So it was a very long surgery. Yeah. So we were warned she’s very meticulous and that’s alright, it was good. We were staying in my mom’s friend’s apartment just down the road so we actually did leave and I got to see my mom for a bit and then we came back. Um, but again, you weren’t allowed to be just be driving because if you were driving, you had to have a permit to say why you were driving. And then I think the best thing that could have happened was another family With a daughter who has cochlear implants came to the parking lot with a bag of goodies and they were just there to check up on us and see how we were doing and To tell us that in a year from now, everything will look so different and this will all be worth it. Yeah. So, Ubuntu, that’s the community that we were talking about and the reason that we are doing this podcast.

Karen: How did that make you feel to have a child with a mom come to you with a bag while your son is in the hospital? Like, how did that? What did that do for you?

Bianka: I think, and as you said earlier, because of the circumstances of COVID, it meant more than anyone could ever have known because And they bought us little energy drinks, some magazines and chocolates. But, and then they, we stood there social distancing and pretending to hug and there, it was, It made us just feel like we weren’t alone in the process, you know, um, that, and they showed us videos and they just continue to reiterate that this feels so hard right now, but in a year from now, things will look so different. So it was, yeah, as I said, the Ubuntu thing. It is totally about community and connection. And yes, every single one of our journeys looks different. But being able to converse with someone who’s been through a similar journey is just a, it’s yeah.

Karen: Yeah, and you can see a little bit of that outcome too, you know. Um, wow. I would have loved that. I would have loved that. Even as an adult, um, because, uh, you know, um, We all know, I’m an audiologist. and my area, my passion, my living is, my work is with the oral rehabilitation part of working with any individual of any age from time of diagnosis to from there all the way to, you know, for some people they get their implant in their 90s and, you know, I’m there. I know the process. I know how it works. I know what’s involved. And um, but for me getting an implant, it was, it was, it was very much like the professional part of me left. It was gone. She was gone. Um, the audiologist went on vacation to Bora Bora somewhere. And there’s the personal me, the one who’s desperate, who’s, and I’ll be honest, um, it took me a long time to come to the decision of making to get a cochlear implant. Um, and first of all, it was because I didn’t qualify or I thought, you know, when I was working, the first I’d The first time I worked with a family who was in the position of having to consider a cochlear implant was when I was in graduate school. Learning to be an audiologist. And we were with the great Carol Flexer. Uh, she was my professor, my advisor, and what In my opinion, I think she is one of the most outstanding paediatric audiologists in the world. And I’m not biased. I learned so much from her and You know, we would catch this baby’s hearing and we would see severe to profound hearing loss and we would talk about hearing aids. Of course, and um, but then, and then we would talk about cochlear implants and when Carol, or Dr. Flexer, tells me to call her Carol, so I’ll call her Carol. When she was talking with the family, she would mention In all her greatness, all of this positive, the future is wonderful. It’s never looked as good as it looks now and we have even the option of cochlear implants and the parents the news was delivered beautifully, could not have gone better. The assessment was phenomenal, could not have gone better. But the parents, um, had this look of shock. In horror and, um, terror on their face, faces. And I, I was thinking, I was shocked that they were, they looked horrified and that they looked resistant to it and I, I couldn’t understand. Hey, why would you be resistant to this? This is, this is an amazing opportunity. I, I, oh my gosh, I would, you know, if I were that baby, I would love that opportunity. Okay, but I did not think that I was a candidate for a cochlear implant. Because I did too well with my hearing aids. And well, I should have because I spent so many hours in therapy, so many hours with my mother on my tail because back then with the degree of hearing loss that I had, The closer you are to your child, the easier it is for your child to hear, the easier it is for your child to learn to listen, and to speak, and to learn how to speak and then speak and then read and then write. Like everything was an active process for me. Nothing It really came naturally for me. I mean, it had to be taught to me. And so I was so proud of all those times I would go into the booth and the audiologist would assess my hearing and then he would do speech perception testing, you know, like say the word base, say the word mass, say the word, I know the list now.

Bianka: Yes, you do?

Karen: Yeah. But I was so good, I got 63% speech perception, which is incredible for my degree of hearing loss, but that’s with live voice. That means I got 64% of the words she said correctly, but I had to think about it. I had to work hard and I would ask him to wait and I would go through, I would take a recording of what he said in my mind and I would play it over and over and over again. And think about what it could best resemble. You know, was it, um, fat? Was it, was it. You know, and I’m, I’m analysing every little bit and making an educated guess. Is that what listening is like in the real world? No, it is not. But, I did so well in the booth. And they were… And back then, um, and it still is the case right now, you know, your speech perception, your speech discrimination scores in the booth are what were the key variables that would influence whether you were a candidate for a cochlear implant or not? And so then I started working as an auditory verbal therapist, seeing lots of kids with cochlear implants. And going to the hospital and meeting the paediatric audiologist on the cochlear implant team and then the audiologist said, Oh Karen, she said, what’s your hearing loss like? So I described it to her and she says, Yes. Yes. To, you know, to impress her. And then she says, well, have you ever thought about getting a cochlear implant yourself? And you know what happened? This reaction. Holding my chair back and looking at her like Yeah. And she, she smiled. She says, what was it? I don’t know. Um, oh, nobody’s ever asked that before.

Bianka: Okay.

Karen: And she says, what are your thoughts? Why would I want to, I’m doing so well and I work so hard twenty-six years, twenty-six years of my life to be able to hear and talk the way I’m talking right now. And that includes the time that I didn’t hear. Because that was a lot of work for me. And I’m not good enough anymore. That’s what came into my mind. I’m not good enough anymore. And she says, I wouldn’t look at it that way because I would look at it as you’re good enough to do it. And I said, okay. Okay. I said, I’m going to have to examine them. Okay. So it took me a couple of weeks. Um, no it didn’t. I was twenty-six and it wasn’t until I was twenty-seven that I went for the investigation.

Bianka: Okay.

Karen: In Toronto. Great program. And the, um, they tested me and they saw the 64% live voice. Speech perception scores and they, they then did recordings. Which, in which you don’t do as well. And I got 43% and they stopped the test. And this is without hearing aid. And they stopped the test and they took me into the room with the surgeon and the surgeon said, you’re not getting the implant. And then he got upset. Because nobody tells me whether I can have better hearing technology or not. Nobody gets to take that choice away from me. And so I said, well, how do you figure? And he says, well, he says, Karen, you’ve got your amazing speech perception scores and, uh, you know, we have 300 applicants a year. Many of whom are way worse than yours and you need to prioritize them over you and you don’t meet the criteria. Essential. And then he gave me some other information, which. I don’t want to go there, but it compromised my trust in the surgeon. And he was just really trying to get me out of the room because I was being very resistant to leave. And, uh, so I guess one, uh, other message is if a client is being resistant, just ride with them through it. Don’t give them information that is not true to get them out of the room faster because chances are they’re going to know. And you didn’t know that I was an audiologist. (laughing) So, um, but, you know, he meant well. He really meant well. So I had to learn from that experience. You know, not everybody is perfect. You know, and surgeons sure can’t be because they’re under so much stress to fundraise for cochlear implants and to get the surgeons, you know, trained and to deal with so many people who are desperate to hear. And you just, we just don’t have the resource, you know, but I get it. So please don’t go. Yeah. I love this guy. Okay. So, um, but, um, there’s lessons to be learned everywhere. And so I spent the next two or a year and a half Traveling around the world, well, traveling to the States to, to, to push, uh, for my, for my, to fight for my choice to be implanted. Um, because I want the option. I want the choice. Don’t tell me I can’t have something because then it’s going to make me fight for it, you know?

Bianka: You sound like your mom, a little bit.

Karen: A little. So I, I went to the U.S. and went to one of the cochlear implant centres down in, um, New York and I had a test and they did the same thing they did in Toronto. And I was so shocked because I was expecting more detailed testing, um, but I understood why they stopped the testing. But I was still shocked that they cut it short with me having spent all this money to fly there and all of that. So I was so shocked that I got on the plane and I and when you get on the plane and you’re way up in the air, you’re like, well, you should have said this and well, you could have done this and you could have done this and you could have done this. So, um, as soon as I got back in Toronto, I went running home, emailed the head of the program saying, well, you didn’t do this, didn’t do this, didn’t do this, didn’t do this. You need to reassess me. When’s our next appointment? And uh, so we went back down there and it was in nineteen almost 1999 in the winter time. So after that assessment, he said, okay, I will approve you for a cochlear implant in your right ear. This is not even my implanted ear. But anyway, more on that later. But, uh, he says, I will reluctantly approve you for one ear, but he says, and, and he says, I know the outcomes will be outstanding with you. He says, if you can do a lot with this, I can’t imagine what you will be able to do with this now. And I said, well, he’d had it. And I said, when can we book it? And he said, well, he says, I need you to think about this for three months. I need you to think. And, you know, I’m so glad he told me this. Really, I don’t regret it. Just give me the choice. And I’ll go home anyway. Um, in, in the second month I found out that I was pregnant. And so I decided to go on and have my baby and then my baby needed my attention. Um, she also had trouble learning to talk and learning, not to talk, but to use spoken language. Um, she was what we call now a gestalt learner and we can talk about that another time. But, um, she needed to be in therapy and I needed to work with her and learn from her and I learned so much from her. Um, she made me a much, much better therapist than I could ever hope to be. And I’m so grateful for that experience, but it took six years. For me, to get to the point in her intervention and her outcome that she would feel that I felt that she could be on her own and I could go and get myself an implant. Um, and then, uh, while I was working, there was a client who had exactly the same hearing thresholds. Exactly the same hearing thresholds as I did. And the same hearing aid, the same performance, and he got a cochlear implant. Well, he didn’t have the same performance I did, but he was the same as me as far as I was concerned. And he got his implant and I saw him bloom, blossom, fly like a rocket to outstanding auditory functioning, whatever it was that the implant gave him, it was extraordinary to see the rehabilitation process, um, that uh, he went through and I was observing and learning from it. And then after three months, um, he started getting infections. Um, he couldn’t wear the magnet or the implant and then it, ah, six months, eight months, ten months later, ah, it turned out that his body rejected the implant. Um, he just very, very rare case. Um, and I was, and he was so devastated. I was so devastated for him that it took me It takes a lot of time to get over that fear, you know. So this is 2007 and um, and I thought, oh my goodness, I’m too scared. I’m too scared. What if something goes wrong? And I’ve lost a perfectly functioning ear. And, um, I was scared. And, um, and at that time, I decided, what is it going to take for you, Karen? You feel comfortable getting this implant because you know failures are going to happen.

Bianka: Mm-hmm.

Karen: You cannot, you cannot control that. It’s beyond your control. And you need to be comfortable with the fact that it will fail and you need to have no regrets. So what’s it gonna take for you to make sure that you did everything you could in your power to make sure that a failure wouldn’t happen? And if it did, then you have no doubt that you did the best you could. And you know it’s not the end of the day. I’m a professional. Okay, cochlear implants plans fail, I know what needs to be done next and I can handle that. I’ve had Clients who have had cochlear implant failures and they want to be explanted and re-implanted. What’s a cochlear implant failure? A cochlear implant failure is either a hard failure or a soft failure. A hard failure is you wake up one morning, your processor is working great, put it on your head, but the internal component is not working. With the outside component. And so that’s a clear, uh, hard failure of the internal component of the implant. And so you go in, you explant it, put in a new device, and then usually everything is great, okay? And they say you expect an average lifespan of a cochlear implant is ten to twenty years. If it’s longer, great. If it’s shorter, great. We’ll, we’ll deal with it, you know? Uh, so I knew that and I expected it. And then there’s the soft failure, uh, where there’s a lot of distortion, there’s no clear evidence that the implant, that there’s something wrong with the internal component, but It’s not functioning the way it should, and those are much harder to identify. And so I’ve had many clients with soft failures, those really hard to identify ones. And so I was getting good at recognizing those, the risks that are involved with getting an implant and what to do and, you know. Um, so my, um, my parents were listening to my concern and my father said to me, Karen, he says, I want you not, I want you to be able to go somewhere else to get your implant outside of Canada because he says you, uh, You’re so well connected with the cochlear implant centres in Canada that I want you to have your privacy, which was really important to me. And uh, I, he offered that to me. Um, for which I’m truly grateful. And uh, so then it was urgent shopping. And I found a surgeon. Um, I don’t think she will mind me. There are amazing surgeons all over the world. Absolutely. I, I haven’t met a surgeon that I don’t love. But, um, this one that I chose was Dr. Aschendorff. Professor, doctor, professor, professor, professor. Dr. Antjie Aschendorff in Freiburg, Germany. And I chose her for many different reasons, um, because she was so easy to talk to. And she, I was introduced to her and she just sat down with me and, um, this is, so tell me what you, what you’re looking for, what you want. And why? And it was just like I was having coffee or drinks with an old friend. And, um, it was so easy to talk to her. And I said to her, you know, I said, what I’m looking for in a surgeon is I know someone who won’t abandon me. When it gets tough. And she said, what do you mean? What does that look like for you? And I said, well, I said, I know cochlear implant failure can happen hard. And I know that they’re pretty scary for a lot of surgeons to deal with. And I said, I just want to be in a position where if something happens to me, A mistake is made. A device is not functioning well. Please, please don’t abandon. Stay with me. And I said, I’ll be with you. I said, I’ll be the nicest gal ever to deal with. And she says, absolutely. I won’t, you know, like, she was able to reassure me and it also made sense to see her in Germany because my husband’s family lives in Berlin. And they also didn’t know anything about hearing loss. They didn’t know anything about cochlear implants. They knew a little bit about it, but Um, they just knew that I couldn’t learn German with hearing aid. So they spoke as much English as they could with me and I spoke as much German. They, they loved me. And I knew that if I went to them, they wouldn’t be saying, can you hear me? Are you okay? What’s the feeling? Are you able to hear? My parents know too much. I wanted to be away from them and also I had families on my caseload. Who was so, um, emotionally invested in my process as well. Um, and I said I need to be away. Far, far away because if something happens, I don’t want anything to to negatively impact their own journey, right? And uh, back to me, the surgeon, the hospital, um, then we had to figure out how were we going to implant me and map me. And follow up with the mapping because back then the rules were if you’re implanted elsewhere you have to be managed by that particular centre. You know, you can’t just get implanted and then go back to your home country and have the audiologist who didn’t want to implant you in the first place to map the device. So, um, we were able to arrange, the surgeon was able to convince Cochlear Germany to sell me the software, the fitting software. Which is you hook up the implant to the cords and to the computer and then you have the mapping software on your computer. So they agreed to sell it to me. Um, and because I was an audiologist, I said, you have to promise you’re not going to map yourself like crazy. I said, absolutely. I won’t touch it. Um, I even took training in how to map, but I said, I won’t touch it, you know. And, um, and the audiologist or the engineers, we call them in Germany, um, actually flew over to Canada with the software in their hands and they set it up on my computers and we Skype to remotely do this programming. They could see my responses and they took over my computer. Um, I just would give them a code and they could take over my computer. And they had control of the mapping software. I hooked myself up. And um, what a blessing that was because it ended up that I did have a soft failure and required a lot of mapping sessions. Almost every two weeks, I needed to be with someone to remap because the sound quality was so distorted and it was painful to wear. And those are some signs of soft failures. And um, I can also give a shout out to an audiologist in South Africa who also did remote mapping for me. So I was the only private client in the world at that time. Who had remote mapping capabilities, which is a dream come true. And I made, I made use of it, believe me. And um, so I think I will say one of the emotions that I had the night before the surgery was saying goodbye to my ear. Um. Because I felt like I was giving up on my ear. It worked so hard for me for so many years and hearing everything. It needs something new, you know, (mouthing sorry)

Bianka: No, no, don’t be. This is, this is the journey.

Karen: So I had a good cry. And so thank you for everything. Yeah, I had to be emotionally ready for that. But it took me so long to get the invite because I had to be Okay. If something would go wrong. And it did. And it did. And I knew that it wasn’t a surgeon. It wasn’t this. And she didn’t run away. And she didn’t run away. And how lucky I was.

Bianka: Absolutely.

Karen: How lucky. And I, yeah,

Bianka: I think it’s really, you know, the, your, your process to get to where you went to, and the same as what we did, I think you bring up a very important point for parents as well, is that You have to also be realistic in that it is a technology and it’s absolutely incredible. But as you said, there is a chance that it can fail and you, you can only be. You can hope for the best and you can do everything right, but things can still go wrong. And I think. Probably one of the most detrimental things in leading up to the journey is to the surgery itself was going on to Google and, you know, Googling all the things that could potentially go wrong. Having said that, the surgeon I think did prep us, you know, with the idea that there are cases where unfortunately something can go wrong. And um, but I don’t think that you had your year with you for so long compared to us who had such a short window in which to make that decision, if I can put it that way. We could have waited as well. But the way that you had gone your whole life and as you said worked so incredibly hard to do what you were able to do and do everything you did so well. And also understand the outcomes of cochlear implants. You, you, because of your profession, you know exactly how it works. Um, so I think you saying emotionally ready is such a valid point and it’s given me some insight into parents that I’ve also met who, who have really resisted. You use that word so beautifully. Um, to get the cochlear implant for their kids as well. And maybe that’s a part of it is, is just not being ready for it either.

Karen: Yeah, and you know, I feel for parents that are in the crunch of time because it really is truly a neurological emergency to get the implant as quickly as you can because it does change every aspect of the child’s, you know, development of the auditory process I’ve had. And what do I mean by that? What I mean is, um, I’ve had a parent tell me, you know, she has two boys and um, both of them born deaf and hard of hearing. And with um, one of them got his implant at fourteen months of age. Oh wait. God, it’s pretty fantastic.

Bianka: Yes.

Karen: Um, and then he learned to listen. Um, but his brother got his implant when he was eight months of age. And it was, um, very quickly after another. So he went bilateral within six months from seven months of age. So he got a first implant, then had a second surgery. Six months later, and so he was essentially bilateral by a year and a bit. His brother got his second implant when he was four years of age. And there is such a huge difference in the auditory capabilities, you know, their ability to understand speech and noise. And maybe not their ability to understand speech and noise, but the effort that it takes to understand um, you know, the older one needs more calling of his name before he responds to it. You know, whereas the younger one is, it’s instantaneous and we can localize quickly and And the mother said, you know, she says, um, it, it, I can tell my older son has trouble hearing. It’s subtle, but I can tell. He’s fantastic, but I know he needs a little bit of help. This is my younger son. I could not tell. And I would not be able to know, I wouldn’t realize that he had any hearing difficulty at all, unless you saw devices on his head. So that’s how much of a difference it makes in auditory functioning and the research shows this over and over and over again. The earlier you get the implant, the better the outcomes, the less remedial the intervention and the more developmental it happens. And so, you know, I can’t imagine the amount of stress parents have to be under, must be under, to make the decision so quickly. And they would love to ask their kids, what would you do? What do you want? Well, you can’t do that, you know? Um, and, you know, for me, Um, you know, it’s just my emotions. I, I, you know, I knew it would have been better if I would have gotten the implant. Before my daughter was born, it would have been so much better for me functioning-wise because the neuroplasticity of my brain auditory centres of my brain is so much better when I’m younger versus older. I will say this. If I would have, if you would have gone to me, If I would have known what I would have had to go through and I would have to make that decision again as to whether I’m going to get the implant, would I do it again? With going through everything I did again, a soft failure. (HUGE GAP HERE – last five minutes) I cannot believe how amazing this cochlear implant is. Okay, it’s not as great with music. But, but, it completes the hearing experience of music with my hearing aid. The implant completes it. But if I have the cochlear implant alone with music, It’s not as rich as it is. That’s the only problem. The only problem. And for me, the, the rest of the improvements has, have changed my life so dramatically. It’s so much easier to hear. It’s so much easier for me to get on the phone and call visa. And say, I’m having problems with my card and, you know, and I can tell whether the person on the line is speaking from a speaker. A microphone from, you know, one meter away versus the microphone on the headset. And I’ll just say, can you use your headset microphone? It will help me to hear better. Like, just having the confidence to ask for it. Like, if I would have had the hearing aid and if I would have had, you know, trouble hearing that operator, that assistant on Visa, I would have just said, you need to talk to my husband. Martin, I tried my best. You need to step in. And then he stepped in and he would look after it. But now, the only thing that’s a negative is that Martin won’t make any more fun.

Bianka: Good on him.

Karen: He learned from my mother. So, and I’m okay with that, you know?

Bianka: Well, that is, that’s such a lovely. Thank you for sharing that. And I think what’s so lovely about that and so fitting that this week we actually celebrated International Cochlear Day as well, because we are incredibly thankful for this technology, as you’ve just told us firsthand. And myself as mom to Oli who, as I shared with you the pictures this week, who at five is standing up in front of his class telling them about his cochlear implants and Is advocating for himself when he doesn’t hear something and says, excuse me, and gives his coaches his mini mic. He walks up to the coach and he asks them to wear it, which. He sees the benefit in it as well. And yeah, it’s an, I don’t think we can speak enough about how incredible the technology is. And just as you said, would we have gone to, I would go, yeah. In a heartbeat, you would do it all again to see what it’s given Oli and the little way that he has come today now. So. Well, I think, I think that is a absolutely good place to end off today. And I thank you so much for going in depth into your story today. And I think that we’ll have to dive into the soft failure at some point as well.

Karen: And cochlear turn on, what did it sound like to an, uh, to an adult? And what would be the difference with Oli? How would Oli perceive it? I have theories about that, by the way.

Bianka: And. No, we’re just banging the carrots. We’re just gonna keep on telling.

Karen: Here we go. we’ve got so much more exciting things to talk about, my friend, don’t we? And share.

Bianka: And again, like, like our theme for our podcast, uh, what we really got to chat about today was the Ubuntu aspect. The multiple people that have been in our lives from that family, from our surgeon to our audiologist. To your audiologist, to the engineers who came over from Germany all the way to Canada, to the surgeon, we have had this absolute Ubuntu experience.

Karen: Yeah, and don’t forget the audiologist in South Africa. I mean, how amazing is that?

Bianka: Yeah, absolutely. Thank you, Karen. And we will see all of you again in two weeks time.

Karen: Yeah

Bianka: Bye

Bianka: So that’s it for today’s episode of Ubuntu, hearing, communication, language, and connection. Thanks for spending time with us.

Karen: 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.

Bianka: 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.

Karen: Until next time, take care and stay curious.

We used an online AI transcription tool to transcribe the video for you – errors may occur. 

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.