Ubuntu – Hearing, Language, Communication, Connection

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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.