Episode 4 – Decisions evolve over time

Introduction

Hannah Cooper

Hello and welcome back to Little ears, big challenges, where we're talking about mild and unilateral deafness in children. My name is Dr Hannah Cooper.

Amanda Hall

Dr Amanda Hall. Today we're going to hear from all the parents who will be giving their advice to other parents who have perhaps just found out that their child has mild or unilateral deafness.

Hannah Cooper

But first we're going to start by talking to Abby, Clodagh and Kim about how the decisions they made when their child was first diagnosed with mild or unilateral deafness have evolved or changed over time, perhaps due to a change in circumstances or a change in hearing. Some of the parents talk about a device called a BAHA, which is a bone conduction hearing aid often worn on a soft band. Some of the parents talk about glue ear which is fluid in the middle ear, which can cause a temporary hearing loss. Let's hear from them.

Abby

Hannah Cooper

Did your decisions change over time? Tell us a bit about that.

Abby

We were at home and we'd noticed that a lot of, like, her language was really coming on. All of a sudden it kind of slowed right down, and we found that she wasn't listening as well to us, we were having to repeat ourselves quite a lot and other people found it as well. So luckily we called audiology and they got us in straight away, so I think the next day actually. And yeah, we just had her hearing check-up and her hearing hadn't changed, but she was congested. So what we found was with the congestion when they did her checks and her hearing tests, the sounds that she was hearing, particularly those speech sounds weren't there, they weren't at the same level that they were previously. We then tried with a BAHA, so with the radio aid and actually it got right through, cut through that congestion because obviously bone anchored, so it was going in, and yeah, so that was kind of a no brainer for us. I think had we tried the, the BAHA and it hadn't made any difference we probably wouldn't have introduced it, but because we know that that one good ear, it's so precious and it's so vital that she's got that those, kind of perfect hearing in that ear we knew the BAHA was going to help. We were supported, luckily, my husband and I were both on the same page, we both agreed, and Betsy was a little bit older then she was, yeah, like I said, two, two and a half, so you could kind of explain it a little bit. We showed her, she was really excited about the headband, it had all animals on it. So we just made it kind of a bit of a thing and made it exciting for her and she was more than happy.

Hannah Cooper

Was there anything that changed when she started at school?

Abby

No, I was just thinking when she was at pre-school she would wear her hearing aid, and it was just her mini mic then. So we've just always been in kind of close contact with the school, and we would always have a chat with them at the end of the day to see if there were any issues. They were happy with everything, so no, we kind of sent her into school like that, but spoke with the school, and her teacher of the deaf did, just about what's going to work for Betsy, so with her hearing loss and her unilateral hearing loss, she needs to be at the front of the class, and she would need her good ear facing the teacher, so she would sit to the teachers right, always. And it's the same when she's in, when they're kind of having their lessons and phonics classes and things like that, she would be in a slightly smaller group. A lot of the time when she's reading, she'd maybe kind of go out on her own and read. And we would find that at home, for example, when we're doing reading with her in the evening myself, my husband, grandparents would kind of take her upstairs so that she's away from, you know, if the telly's on or the boys are playing, we'd kind of take her away from the background noise, mainly for phonics and reading, just because it's kind of getting those sounds right for her, which is so important. So yeah, and school have been, like I said, she's been there a year, they've gone in and they've made adaptations already, so we're quite happy that with how Betsy is. And equally there's been a couple of mornings when I, you know, I've connected everything up and the BAHA, it just wouldn't stop buzzing. And I've disconnected everything and we've tried it again and it's done the same, and, you know, do it two or three times, and for some reason, just that morning it's not working. So I've said, right, I've sent her in without anything on and she's actually been fine, she's managed absolutely, yea, with no problems. And I've spoken to the teachers and they were like, yeah, she, you know, she could hear everything, she was responding. So it's good to know, I think as well that if, yea, if we didn't have anything, you know, we went away and we did forget the BAHA, that that she's all right. You know, she's reliant on it and we would always want her to wear it at school, but sometimes technology's technology, isn't it? And you can't always work it!

Hannah Cooper

Has she ever been reluctant to wear her hearing aid?

Abby

No, I've got to say she's really been, she's just taken it on board. She's always been happy to wear it, apart from those times when I'll put it on in the morning and it's just buzzing and I can't really, I'm sure if anybody's listening to this and they've got a BAHA they'll know the exact sound I mean, but it's just a very high pitched, horrible noise, and actually, if that was on the back of my ear, oh gosh, I'd want it off as well straight away. So no, she's never been reluctant. Sometimes in the winter months you can't really wear the BAHA with a hat because obviously you can't have anything covering it, so we just have to think, how cold is it today? What's going to be more beneficial? Obviously, I don't want her out in the cold, ear infections and things like that, so that's the only thing. You know, in the summer when they're in the garden playing, we've got the water out and stuff, we obviously wouldn't have it on then, but no, I've got to say she's always been pretty happy to wear it. And I think now that, you know, she has different bands and different clips so she can kind of accessorise, so she's happy. It's something else to accessorise for her.

Clodagh

So yes, when she was just so distraught when I was trying to put it in each day, it absolutely crossed my mind, look, one ear is enough, you know, she doesn't need a hearing aid, but that's what my husband always said, she doesn't need a hearing aid. And I'd say, oh, yeah, they've just spent, you know, all of this time and money to get us to this point, but, sure, she doesn't need one. But yes, when she was really upset, I thought, okay, we'll just take a break, we won't bother, we won't do it, we won't worry about it, we'll let her make a decision. But actually, I am really glad that I persevered every day. And yes, I did stop as soon as she showed signs of distress because I didn't want her to have a bad association with the hearing aid. But I'm really, really glad that I persevered with it. It does make a difference to her life if it doesn't make a difference then she wouldn't be so willing to wear it each day. So yes, that was the only time I sort of thought, oh, let's not bother anymore, but I am glad I kept trying. It was like something just clicked for her to be willing to wear it, and it wasn't us that it clicked with, it was somebody completely different. And if Bethany gets to school and says, I don't want to wear my hearing aid anymore, providing it's for the right reasons and not because people are being unkind to her, I will completely support her decision. If it is because people are being unkind to her then we'll deal with that in a in a different way. But if she says, look, I've tried not wearing it, I feel more comfortable not wearing it because, you know, I can hear certain sounds better or whatever it may be, then we will completely support her in her decision. You know, I know there's lots of people, adults who are in office environments, for example, who choose not to wear it. And obviously, the older she gets, the more ability she'll have to make those informed decisions. But while she is still my baby and can't make those decisions herself, then we will continue to do what we think is right. And that's it, every child is different, aren't they? What's right for Bethany is not going to be right for other children, but it may be that other parents have similar experiences to what we've had, and might feel that there's a bit of light at the end of the tunnel when the child is point-blank, refusing to wear it. And we think it's worth it. We were told at the start that it might be glue ear, and I felt that was pushed quite hard to the point where we were almost sort of doing all our research on glue ear and reassured that it wouldn't be permanent and there was things that could be done, blah, blah, blah. So I think from that point of view, I would just say to other parents, if that is really being pushed towards you, don't discount it entirely, but also don't pin your hopes on it because it is scary and it is upsetting when you hear that your child is deaf no matter what level, especially when you come from a family line that there is no deafness and you don't know why it's happened. And, you know, mums especially, oh, is it something I did when the baby was cooking? You know, what's the story here? So, yeah, glue ear for us was a complete red herring, and I wish that I hadn't pinned so much of my research and hope onto glue ear.

Kim

We did, um and ah a little bit about whether to go down the hearing aid route. It wasn't our first choice initially. We did think perhaps that Ela would be fine with her development if we left it and monitored it, and she certainly wasn't showing any signs of a delay in any communication or behaviour or anything. I mean, as a teacher, I just felt like if we could give her anything to support her with her communication, I think that's how that's always been our kind of key word, communication, and how could we support her with that. We didn't take the decision lightly to go down the hearing aid route. We don't see that we will change our minds anytime soon, particularly as the hearing has got worse. If anything, we're kind of looking down the route of how we can improve her hearing more because only recently has she been diagnosed with it being more severe to profound in that left ear. So the hearing aid that she's currently using is not really supporting her as well as it should, and we believe that she recognises that because she pulls out a lot more, she points to it and she, she recognises that something's not right with that ear. And we recognise that when she has her audiology appointments as well, because she reacts very differently and you can see that she's frustrated when she hasn't got the hearing in that ear, when they take the hearing aid out and they try and test her sounds, her frequencies and everything in there, there is a frustration there, she recognises that. So further down the line we probably will have to think of something more powerful for her to help her with her hearing in that ear. However, we know that her hearing is currently very good in the her right ear, we don't think that we'd ever say no completely, it's not impossible. But we want to wait until maybe if she's older, she can make that decision for herself if she would prefer. But currently we want to support her as much as we can so that she can have the best experience of life that she can.

Amanda

I think a lot of parents of deaf children might start off with that reassurance from hearing screening, that it could be fluid in the ear or glue ear, which is the reason their child's referred. And that's true for a lot of children, but not for all.

Hannah

Yes, and parents have told us that they've then been quite shocked to have a diagnosis of permanent deafness, as Clodagh mentioned. The final topic that parents are going to talk to us about though, is the advice that they would give to other parents in a similar situation. So let's hear from them.

Clodagh

It is really scary at first, but you soon get used to it. And I say, we've been chosen as parents for these children because we can advocate for them best, we have their best interests at heart, and there's a reason that we are the ones who have been given these children, because we can do our best for them. Lean on any support groups around you, whether that's on Facebook, whether that's the National Deaf Children Society, you know, lean on everybody you can because it's a completely, you know, it's uncharted territory, you don't know what you're doing, especially in our case, and other families who will be similar, first child, no family history of deafness. So just lean on any support that you can really and don't be afraid to ask questions especially of your audiologist. Just ask, ask, ask as much as you can. I send emails, you know, the middle of the night if something pops into my head. So yeah, and just, you know, you will do your best for your children.

Joe and Louise

Joe

You've got to remember, people will always, you know, write negatives more than positives online so you can really scare yourself. The situation, you know, everything from, kind of, finding out and going through as your child grows up, it is stressful. You've got to try not to stress, but you've got to work together as a family, support each other, and, you know, do the best by your child. And that doesn't mean it's the same as what somebody else has done, it's what's right for you. And our biggest benefit is just the amount of research and people that we've spoken to, the information is really the key, and it can seem quite a daunting and overwhelming task and not knowing where to start, but I'd say by starting, you know, you can start with NDCS, they really have got a lot of good, easily accessible information. You know, we’ve done an online signing course, six week family course, and that's done on Zoom, one hour sessions for six weeks, and that's a really good introduction. It's not intimidating because I think sometimes you can think, you know, I'm not going to be able to do it or everybody else is going to be really good. And it's not, it's a really good way just to, you know, kind of everybody's in their house, they're sitting on the sofa or whatever. It's a relaxed, open environment, and it's just an opportunity to also meet other parents in similar situations. And, you know, support groups are good, but you've got to remember, the support groups are worldwide and options are different and it can sometimes be frustrating when the UK seems behind. I think yourself, Hannah touched on it earlier about wrapping them up in a bubble. Me and Louise had multiple conversations over this, especially with George having the EVA and Pendred, and so you know, you can't let them go on anything bouncy like a trampoline, you can't do this, you can’t do that. You know, there was so much you couldn't do and would read on support groups, so there was a woman who'd wrapped her child up in an absolute bubble from birth, and at 13 years old, still the child lost the hearing. And then you hear others who just, you know.

Louise

Still play rugby.

Joe

Yeah, and they’re fine and I, you know, within reason, I really don't think it makes a difference. I don't think enough is known specific to those conditions. And we didn't want the approach of where we've stopped George living life and doing everything and it still happens. And that's the biggest worry, I think when you can accept that, you know, whatever happens, happens.

Louise

Some things are just beyond your control.

Joe

Don't wrap them up in a bubble because you'll stop enjoying things yourself. You need to enjoy life and not make, I think one of our biggest problems was we felt, you know, our life had become this, everything, and we stopped kind of enjoying everything else. And it took a long time to get back on track and, you know, go out and enjoy things as a family.

Abby

As soon as you get a diagnosis, you know, anything, and especially with children you do kind of spiral and you want to look at what can we do right away that's going to help them. And sometimes it's not always about that, you maybe have to see how things go. Everybody is completely different. I think the thing to think, we've never, and again, whether it's luck or it's perhaps people's perspectives that have changed over the years, you know, five now and we've never had anything negative being said about Betsy, you know, she's never come home from school, people call it her magic here, and everybody's just really accepting. And, you know, I'm sure as she gets older, if she continues to use the BAHA, it might not always be the case. I think it's, yeah, not worrying about what people think. I think be open with people. Don't be scared to say, oh, actually, she needs this, or, you know, if you go to a party, you know what children's parties are like, you know, if there's an entertainer, make sure that they're sat up at the front. Put them first, their needs, what's going to help them. And every child will, you know, react to things slightly differently. You know, some children won't want to wear a BAHA and I think in that case, you just have to persevere with it if you're going down that route. I think again, we've had a very positive experience with audiology and I know not everybody does, and the different services, but I think try to access different charities, support groups. I mean, we went to one and we stopped obviously when Betsy went to school and it was, they were amazing. And every couple of weeks we'd meet with them, you know, lots of different people. We first took Betsy when she was, oh, two months old. Yeah. And we could go with our eldest son, he used to come along as well, they were so accepting. And I think it's just talking to other people. And coincidentally, from that group, I saw a girl there who was older than Betsy, and she had double cochlear implants and I remember sitting with her and talking to her, and I was really surprised, you know, she was she was so fluent in her speech, and I think I thought, you know, our first thought when we found out Betsy with deaf was deaf was is she going to be able to talk? What's it going to sound like? Is she going to be able to do this? And actually seeing that girl, yeah, it kind of filled us with a lot of confidence and really a lot of the fears that we had disappeared. And actually, she now goes to school with that girl, so it was kind of a real, yeah, which, which we didn't realise, you know, it was a big, it covered a big area of the classes, so it's obviously coincidental. But yeah, I think just try not to panic too much I think listen to audiology. If there's anything you're not sure of, if you think there's any changes in hearing loss, make sure you get on it straight away, really push for an appointment. We've been lucky that if we think her hearing has changed, especially because of the condition she's born with, where it can change quickly, invariably, we'll call up and we’ll be in the next day for them to check them out. So yeah, just do what you can to support them. Have open and honest conversations, and if there is something that you want to do, you know, if you want to go for a different type of hearing aid or something that's going to help, then then say that and have that conversation and see what the pros and cons of that would be. For us it's been a positive journey. We’re just used to doing everything now. Try not to spiral a new support groups. I know lots of people don't necessarily use them, and they're a bit worried about going and what they're going to find and get panicked about what other people. Do what's best for your child, do what's best for you but reach out and I think you'll actually find there's a lot more people in your situation than you ever would have thought.

Kim

Well, first and foremost, I think that the audiologist is a really good person to ask questions to. In my case, I'm quite, I suppose, an extrovert, so I have the confidence in myself to ask challenging questions. But that being said, initially, when we first discovered that Ela had unilateral deafness, it was quite a shock, I wasn't expecting that, and so I probably didn't ask enough questions, and I think I probably should have asked more. So, my advice would be to ask as many questions as you can. No question is a bad question or a wrong question, because they have been working in the industry for however long they have. They are very experienced and if you feel that you want to challenge it more than, then do it because ultimately it's your child, it's their future you're thinking of. I think that seeking the advice of the teacher of the deaf is really useful as well. But as I said earlier, we've had a really positive experience, and we have a great relationship with our teacher of the deaf and I don't know that everyone has that with theirs. But our teacher of the deaf was so supportive, she gave us lots of advice. She gave us an idea of what to expect in other environments, because when we first had Ela's diagnosis, we were obviously, you know, it was basically just me and her at home because she was a newborn and all we did was eat, sleep, relax for a while. So in our little bubble it felt fine, but recognising that she would have to go to nursery at some point and understanding that in a more crowded environment, she might not recognise my voice from far away, or she would hear my voice but not know where I was coming from and so we had to think of it from a safety perspective as well. I think she opened our eyes to recognising the bigger picture. So yes, I would say ask as many questions as you can and use the professionals to help you because they ultimately know more about deafness than I do anyway. Ask questions and if you're not too sure, you know, I mean, obviously not everyone has it, but I just followed my instincts, and I just thought I had to think about Ela and her future, her communication and safety as well. So I use those to help me and my instincts just said this is the right thing to do.

Waqas

The first few months are going to be very tough. They were very tough for me, right, as a as a man of the house, right, I thought I would handle it well, but I didn't handle it well. Sana handled it really well, but I think it's her personality and she's a doctor as well. So I didn't handle it well, so it's like that thing right, the cycle of grief, right. The first is denial, then it's blaming yourself, then you go into depression and then you start coping with it, right. So you need to go through that cycle. You need to identify each stage. And the way I think it worked for me was I did a lot of research, and I talked to a lot of people, and that gave me the confidence that, okay, it's fine. There are strategies here. And believe it or not, right, I've lived in quite a few countries in my in my life. UK is the best country by far with all the challenges that NHS has, even with that, UK is the best country for a child with hearing impediment. So parents can do their research and research will give you, it will not give you all the answers that you're looking for, but it will give you the right venues that you can tap, just like I was able to tap a lot of funding resources, right. Do your research. There are amazing charities out there, NDCS is a of wealth of knowledge, a wealth of knowledge, and it's just free, free of cost, right. All you need to do is spend some time and research is free, of course, all you need is a phone and some decent internet connection. And that also helps from a mental health perspective, because if you know that you're doing something and they're showing some results, it gives you mental peace as well. It worked for me, at least for the first six months. It greatly helped me in coming up the curve and coming up to a realisation that, yes, Zoya is going to have this hearing loss, possibly for the rest of her life. Maybe if the medical therapy develops during her lifetime, at least not in our lifetime, but during her lifetime that can reverse her hearing loss, good for her. But we need to give her all the tools that can help her to basically become anything that she wants to be.

Amanda

What great advice from all the parents, and what a lovely note to end on from Waqas.

Hannah

It's been so amazing, hasn't it, to hear from Abby, Clodagh Kim, Jo, Louise and Waqas throughout this series, and we'd like to thank them so much for sharing their experiences with us. In the final episode, we'll be talking to young people and adults about their experiences of having mild or unilateral deafness. So do join us for episode five, positive about the future from Little ears, big challenges, here on UCL Minds.