Episode 3 – Prioritising your child as an individual

Introduction

Amanda Hall

Hello and welcome back to Little Ears Big Challenges, where we're talking about mild and unilateral deafness in children. My name is Amanda Hall.

Hannah Cooper

And I'm Hannah Cooper. Today we'll be talking with parents about how they prioritise their children as individuals, acknowledging that mild or unilateral deafness doesn't fit into the mould where one size fits all. We know that some parents are told that one ear is enough and a child will hear what they need to, and others are given technology such as hearing aids and don't feel they have a choice.

Amanda Hall

We ask Clodagh, Jo, Louise, Kim, Abby and Waqas to tell us about their experiences of how they prioritise their child and family's needs, and they also discuss other avenues they explored to help with their child's hearing and communication. Some of the parents talk about a device called BAHA, which is a bone conduction hearing aid often worn on a soft headband. Some parents also talk about the cause of their child's deafness, including conditions called CMV and EVA. CMV stands for cytomegalovirus and is a common virus that's usually harmless, but it can sometimes cause deafness in babies. EVA stands for enlarged vestibular aqueduct and is a difference in a person's inner ear, which leads to deafness of varying degrees. Some parents also mentioned BSL, which is British Sign Language. Let's hear from them.

Clodagh

I certainly never felt like I was given the hearing aid and we didn't have a choice. I didn't feel that at all. Um, one ear is enough; we were we were told that Bethany's hearing in her right here was, you know, pin perfect and it would carry her and we had nothing to worry about. Because I did get myself in such a tiswaz about her not wearing the hearing aid, but actually with the one ear is enough, the right ear will carry her. That reassured me but didn't make me feel that she shouldn't be wearing the hearing aid when she did agree to it. But I am much more relaxed now, you know, when she chooses to take it out and she's had enough, she has listening fatigue, she's had a busy day, we're in a noisy environment, I am much less concerned that, you know, she hasn't got her hearing aid in because I am confident that the right here is strong enough to carry for those short periods of time.

Hannah Cooper

And did you notice any difference with the hearing aid?

Clodagh

It's funny you should say that, because almost within I'd say a week and a half, maybe two weeks at a push, she had started stringing sentences together. Once she had agreed to wear the hearing aid and was wearing it every day all of a sudden her sentences really started to come together. Now I have no idea if this was age related, hearing aid related, or a mixture of both. I have no idea and obviously we'll never know, but it was very coincidental. She is just such a chatterbox and she loves dancing and singing and she has done from forever, so yeah, in that respect, I didn't notice a difference, if not a bit more singing. But yes, otherwise the sentences would be the thing that we noticed most.

Hannah Cooper

Was there anything else you did to help Bethany’s hearing and communication?

Clodagh

I did the free six week course via the NDCS which I think was on a Tuesday evening every week for six weeks. Unfortunately, my husband couldn't do it because he works nights, so he was always off by the time it was on and they weren't recorded, so I couldn't play them back. We've recently been told that, um, the London Freemasons have offered funding for an at home BSL teacher to come and teach, so I did a similar chat like this with a lady and I received an email a couple of weeks ago there saying that we'd been told that we were successful, so I'm just waiting to hear the details about the tutor who will be able to come to the house and teach us some more. And, yes, to start with, Bethany was very receptive and using it all the time I'd say, but she absolutely prefers speech over sign language. However, I think sign language is such a great skill to have you know. There was a lady at nursery, her child has left now, but she was deaf and watching her try to communicate with the nursery staff who don't use sign language and don't know much of it, I just thought, if, you know, if you just have a little bit and you're able to communicate even a tiny amount it's just such a valuable skill to have. And I remember going to, there's a few events that happen around here, the Families of Deaf Children in Essex, and I remember going there and everybody was so kind to us to our first event that we went to, and there was a particular lady who was deaf, as were both her children, and I couldn't even say, you know, sorry for getting in her way or anything like that. And I felt, I felt awful, you know, that I'd gone, you know, they'd accepted us so readily into this complete world of unknown for us, and I knew nothing to give back to them. So yes, and I've got, there's some great free apps available as well. There's one that is basically like a dictionary, you know, I type in ‘mouse’ into it and it'll tell me what the sign is for mouse. So, yeah, having resources like that are fantastic.

Hannah Cooper

Did you get in touch with any parent groups?

Clodagh

Yeah. So there's the Families of Deaf Children of Essex, I can't remember the exact name of it now, there's a Facebook group, which I'm now part of which our teacher of the deaf put us onto. Because she had put us in touch with another family who live quite close to us, who have a similar age daughter, and had also gone through the struggle of her not wanting to wear her hearing aid. So she'd put us in contact with one another, and they had then subsequently put me onto this group. So, yeah, to just have other parents that you can talk to who are in similar situations, you know, you have questions about earwax, for example. You know, the audiologist said that Bethany's ear canal was full of earwax and that might be why the hearing aid is ringing, and I put a message on there one day saying, okay, how do I get olive oil drops into a two year old's ear, please? So it's just things like that, having people who know exactly what you're talking about and are on the same journey as you. What do you do? How do you get a two year old to sit still and have the olive oil drops? The resounding answer was do it while they're asleep. But then you're relying on her not sleeping on her left side, you know, and being turned, and she is better now, you can just sort of wrangle her into position and say, you need to lay there for a minute. But yes, just questions like that, you know, I can't just go and ask my normal mums group because they're not in the same situation as me, but to have other parents who know exactly what I'm talking about, it's fantastic.

Joe and Louise

Louise

When George was first diagnosed, I could be wrong were we told the usually aid unilateral deafness when they start school.

Joe

Yeah, I think I can't remember, not saying verbatim here, but I think the general approach from them was, because we were pushing to get stuff done early as possible and they were saying no, at this stage, you know, he won't use a hearing aid because it can just distract the hearing on the good side and caused more problems.

Louise

Because he was severe to profound in his deaf side, so they said you'd need a really powerful hearing aid and it may cross over to the hearing side.

Joe

And then the BAHA, even then we kind of had to push for it and keep asking, it wasn't it wasn't as forthcoming, I think, as we would have liked it.

Louise

And when we found out he had a progressive hearing loss disorder I learned BSL level one, just to be prepared really in case that, I mean, just as well I did in the end because we did need to use it when he lost his hearing. And I taught you some of the signs because we couldn't afford to do the course together, so I tried my best just to teach you what I got taught on the course.

Joe

And, just communicating with your child, you know, facing them, making eye contact, choosing the environment, just being aware when they might struggle more. And just little exercises, you know, one of the biggest benefit is, you know, the teacher of the deaf was assigned from kind of pretty much straight away from a few weeks after finding out, and they are good support you know, both to George's development and family support, they’re really good, and, you know, I think that was one of the things that surprised us, just how early that was put in place, that was really good.

Louise

Because I think the teacher of the deaf, they contacted me the day after he was diagnosed, I said, God, that's quick!

Abby

I think for us it's been enough with Betsy, and I think now that she's been at, you know, she had a year at pre-school, she's been at school now for a year, so she's kind of got that under her belt, and we've seen how well she's done there, how she's progressed, so I think for us it's enough. But it's, you know, everybody's completely different. So actually for some other people know it might not be enough, you know. So, I know, I think I feel like most of the time it’s said that, yeah, if you've got one good ear that is obviously that doesn't have any hearing damage, hearing loss at all, it wouldn't be necessarily an option straight away to go for a cochlear implant and things like that. And I can understand that, it's a big thing to go through, it's a lot for the child to get used to. And actually, I think a lot of people think having a cochlear implant is going to give you hearing, like you or I would have, but actually it's very, very different. You know, they can try to give you an example of what the sound will be like, and it's a strange sound for the child to probably get used to, but obviously they are still getting something in that side, aren't they? Yeah, so for us it was enough, and perhaps we're just lucky with how things have worked out and that her hearing has stayed okay. We've got a younger son as well and I'm so used to when Betsy is sat on my lap or we're talking to her, talking into her right ear, that I find I do the same with him, I'll make sure that when I'm talking to him, I talk into his right ear, and I forget, obviously, that he can hear him both ears. But it's just something that, yeah, that we're used to doing and, you know, we're lucky with everybody that's around us friends, family, take everything on board and, yeah, have kind of looked after her the way that we would look after her and treat her, you know, how she needs to be treated. And there are changes that you need to make. And I think that's it, sometimes I think a lot of people get the diagnosis, you know, any diagnosis with children, you think you're going to have a child that's going to be born and they're going to be normal, and what is normal, you know, and then something comes up and you kind of just have to adapt to it. And I think lots of people are worried about those adaptations and what other people will think, whether or not children are going to judge them. And I think it's, and it depends what type of person you are, you kind of have to try and forget about that if you can. But it's easier said than done, of course.

Hannah Cooper

Was there anything else you did to help Betsey's hearing and communication?

Abby

So just, yeah, I mean, if we're looking at her, we would always try to get down to her level. Sometimes we will need to repeat things you, often you'll forget and I'll be in the park and I'll call her name and, you know, with all the noise in a park or a soft play, you just have to get a little bit closer to her. If we were coming up from behind her potentially, we'd always try and, like, tap her on the shoulder so that she knows that somebody is there. And things like when, when she was, with sleep and things like that, sometimes it's quite beneficial, actually, but you kind of don't know how, what it's like, I guess, having a one sided hearing loss. And if she wakes up and her bad ear is facing upwards and she can't hear anything, when you wake up in the middle of the night and it's a bit dark, you know, it's a bit disconcerting. So it's just trying to remember things like that because you do like, you know, myself and my husband will say, you kind of forget sometimes, and we treat her like her brothers and which we want to do. But sometimes you have to think, actually, it could be because of this, it could be because of that. And with one sided hearing loss, one of the things we noticed with Betsy, her balance is sometimes, not in terms of walking, running, but she wouldn't, in terms of going upside down or spinning around that can make that, she doesn't really like things like that. And again, that could just be Betsy, it could be her hearing loss, and they can't always voice what it actually is, but we just have to have that in the back of our minds. Yeah and school make different adaptations as well. She's got a teacher of the deaf that goes in, will check out how she's doing. But her teachers and all of, like, her classmates have been amazing, actually, just take it on board, treat her no differently. But the teachers make everybody aware of what's going on, which is great I think as well, just so that there's not kind of that stigma and the children are happy to talk about it.

Hannah Cooper

I think you mentioned that Betsy has a radio aid. Can you tell us a bit more about that?

SPEAKER 6

Yeah, so she used to, so she had her hearing aid, and then she would have a little mini mic, which we used to use, so I would wear it, her teachers would wear it, for example. Now, her teacher of the deaf went in and kind of looked at her environment and she recommended that we use, yeah, a kind of a slightly larger radio aid which is called Roger. So now Roger goes everywhere and the teachers call the little, have you got Roger? And I'm like, oh, yeah, yeah. Betsy will say it as well, ‘mummy, I need Roger’. And yeah, so Betsy now wears her BAHA, she wears a mini mic, and then the teacher will wear the radio aid, and the one that she's got is, it's just really good for the, kind of a school environment. If there's a lot of background noise, then the teacher's voice will automatically rise in Betsy's BAHA, her hearing aid. So, yeah, we've seen that that's worked really, really well. We don't use it at home. If she's at home and she's got her BAHA on then we don't feel that we need to use the radio aid and often, actually, when she's at home, she won't have her hearing aid on. We tend to take it off after school because it's quite a lot, it can be quite tiring. So we tend to take off just so that she's got a bit of time to relax and, yeah, just without the hearing aid.

Hannah Cooper

And do you have the option to use it at home if you want to?

Abby

Yeah, absolutely, yeah, so every morning I'll set it up before school just so that we know that it's working and everything, so yeah, completely, her teacher of the deaf and audiology have been great, and that's always been an option if we wanted to use it. So, yeah, there would be times like if, you know, on holiday, I'll take everything with me because I'll know that there will be certain places we go to where I want to use it, but generally at home we don't.

Waqas

In the first three months we made the decision that all the interventions we will go and then, you know, hearing aids coming in, going to the audiologist, etcetera, etcetera. During that time, we also got contacted by the teacher of the deaf and then the teacher of the deaf came, really, really, really helpful. They also connected us to the early years practitioner that works with the teacher of the deaf. Now, they assessed her and because of her mild to moderate, she comes in at a lower end of the spectrum of requiring support, so that was another area that we had to navigate through. Okay, she requires less support, but in the earlier years she needs as much support as possible. The teacher of the deaf could only do home visits once a term. But then they have this deaf club, deaf children club every second week. So she goes there so that she has access to not only teacher of the deaf and the early years practitioner every second week, but also other children of her age. And we can also connect with other parents in the in our borough who are also going through it. So with the teacher of the deaf and the early years practitioner, we go, we make an effort and get onto a personal basis, and then they also guide us in various strategies, in deploying. But most importantly, what we also found out was that while doing our own research there's something called radio aid. So radio aid is like a wireless microphone that you wear around your neck and then it gets directly connected to the hearing aid. And where it helps is if it's a noisy environment. So think about if you're travelling on a bus or on the tube or let's say in the nursery, right. So we talked about that with the teacher of the deaf and she said that for that we don't have funding for that, and we can only provide that once the child reaches reception, so that's after four years of age, right. And then we can only provide that to the reception staff at the school and not to the parents. So I took up that fight. During our research, we found that there are a lot of hearing aid charities. So one is of course NDCS, right, that's like creme de la crème, but they don't provide funding to individuals. So then I tried to find out what are the other funding sources out there and one of the best signpost for that was this website called Turn To Us. Went in there and put in all the, basically all the parameters, and they gave out a list of charities that can potentially help us. And then I wrote to everyone. So there was this charity that we contacted, out of the seven, eight charities, one of them said yes and they made the payment directly to the to the vendor and then the vendor, sorry, the distributor sent it to us.

Hannah Cooper

Can you tell us how much time that took you?

Waqas

It's a lot of work. So each application took me around a couple of days, and then you need to draft the letters, the support letters for the professionals as well so they don't have to spend time in drafting. So they just copy paste it onto their letterhead and then just send it across to us. But thankfully, the teacher of the deaf that we worked with is really good.

Hannah Cooper

What kind of conversation did you have with professionals about hearing aids and how to manage them?

Waqas

So we made our mind, even before we went to that stage, that hearing aids are going to be the way forward. But everything, all the professionals that we have interacted with, they have stressed that, make sure that the child has access to hearing aids during all her waking hours. And we actually saw that in some of the deaf club, in some of the interactions with other parents and other children that are coming to the deaf club, the reason for that was that a parent needs to be very persistent, particularly in the early 1 to 2 years, because as soon as the child, infant discovers their ears, they'll start throwing them off. And it's a hassle, right, it's a proper hassle, as I said. Now, Zoya is conditioned, after we have, I thought that by the time she hit 17, 18 months, she became really conditioned to wearing hearing aids. Now that when she's not wearing hearing aids, she's actively looking for them. So whenever she needs for the hearing aids to come off, after 18 months to 20 months, she takes them off and comes and gives them to us instead of throwing them around. So the parents need, it's a very high effort. Soldier through, I think that's the key word, to soldier through the first 18 to 20 months.

Hannah Cooper

What kind of support do you get from people around you and what support do you give to Zoya?

Waqas

When we are going to extended family visit, and particularly that cultural stigma comes up front and centre, right. Why is she wearing hearing aids? Is something wrong? Uh, okay. But she's hearing properly without the hearing aids. So that conversation every year when we go, we need to have that conversation again and again and again. So that becomes a bit tough, but it's only there for a few weeks. But I can imagine if the family, the full family is here, right, so for, for UK citizens or UK natives, as if I can use that term, so their entire family is here, so then you know, they need to be supported. Another thing we have noticed is children Zoya’s age ask questions, so in the playground they ask questions, they'll point. And then you need to, we are trying to condition Zoya to say that it's just like daddy's glasses that you're wearing hearing aids. We haven't reached a stage where, and I'm sure we will encounter that challenge where Zoya is going to get bullied because of her hearing aid. So we're trying to build her confidence up from the get go. that once she reaches that stage when she's getting picked on because of her hearing aids, she has the right set of strategies to encounter that.

Kim

I think initially we were more on the side of wait and see, one ear is enough, and then as Ela’s hearing got worse, we were given more options, and we were given a lot of different leaflets on the best route to go for the next kind of steps once the hearing was getting worse. In hindsight, I think perhaps we maybe were pushed down the hearing aid route, maybe sooner than we would have wanted to. But I certainly hold no regrets, it certainly wasn't forceful pressure, it was, you know, this would likely be better for her, that was more what we were told than being pushed into that decision. So we've had a fairly neutral kind of experience, I'd say overall. And I don't know, I think because Ela's hearing in her right ear is so good that perhaps we felt that it was okay to wait a bit longer than we did.

Hannah Cooper

Did you notice a difference in Ela's hearing when she had the hearing aid?

Kim

Initially, maybe not so much for the first few weeks. Unfortunately, the week that Ela first tried on her hearing aid she also had a horrible ear infection, so she was really reluctant to wear it and we realise that it was really painful because it was in her deaf ear. But once she settled into having her hearing aid, once everything healed up and she was feeling a lot better, we, slowly noticed that her communication became a lot better. I mean, she's always been quite chatty with her baby babble when she was very young, but we just noticed that she was beginning to say more words. And now she's such a chatterbox that we know that it has really benefited her. I think she was obviously not hearing a lot of the sounds that make up full words for her. So when she was used to the hearing aid, it's really helped her to recognise the sounds that she was missing. And even the nursery notice they, you know, they're quite quiet with the communication in our nursery, but they very clearly said we really recognised the change in her, which was really lovely to hear. It just helped us to recognise that we'd made a good decision for Ela's communication.

Hannah Cooper

Was there anything else you did to help Ela's hearing and communication?

Kim

So we have been using signing to help Ela. I went down the route of getting a private online course to BSL to help support Ela with her communication, and before we even knew that we were pregnant, I'd always said I wanted to use sign anyway, because I just think it's a really important way of being able to communicate with children. It just helps them to have another way of being able to express their feelings or their needs. So we kind of put that into motion as soon as we knew that she was deaf. I speak Vietnamese and my husband speaks Welsh and we speak English together, so BSL has really helped us to create a stronger communication between the three of us and our external family as well, because we all have a united language that we can speak, even if we're not speaking each other's mother tongues, and that has been really positive for us because I think Ela is able to use sign to support the way that she's communicating with us, especially when she hadn't formed full words yet. She knew the sign for more, she knew the sign for water, very child friendly, simple signs that she was able to use to help us to kind of understand what she was saying to us, especially when they're really young, you obviously don't know what they're saying, doesn't matter what language it is, they don't really say it the proper way anyway, regardless of deafness. So that's really benefited us. We've always used a lot of visuals as well, Ela’s very eager to learn, so being able to show her what we're doing as well, she really responds to that. But I suppose in some ways I have the benefit of being a primary school teacher so I have more ideas under my belt in some ways than a non-teacher. So I can use different resources, I have access to more people who can help me because I'm very close to the teachers who are in reception at my school, so I was able to ask them for advice on how to support her in a in a better way for the younger ages, because I teach older children. So I've had that as a benefits and obviously not everyone's going to have that. But signing has really helped us for sure, and we even signed up for the family NDCS signing course where it was six weeks and we got all the grandparents involved as well, and they responded really well to that, and I think that's really helped everyone to just be able to have better communication. Yes, we've had a very positive experience with Ela's deafness and being able to support her, but I know that we're very fortunate to have had that.

Hannah Cooper

Did you get in touch with any parent groups or deaf groups?

Kim

Actually, no, we haven't really been involved in any deaf communities. Firstly, when Ela was first diagnosed with her deafness she was equally also diagnosed with CMV. So the first six months of Ela's life, we were constantly going to hearing appointments, but also we had to go into central London to go to CMV appointments. So our weeks were just constantly appointments for the first six months of Ela's life, so we didn't really build a relationship, well find a way to build a relationship with anyone. We did get into contact with another parent whose child is profoundly deaf and both ears through NCT, because we did NCT courses when we were pregnant, when I was pregnant, I can't say we! But Ethe woman that I met, her son was, she was from a different group, and my NCT teacher had contacted me and said, oh, actually, I heard that your child was born with CMV, and another mum has had her son diagnosed with it, would you mind me giving you her number and you could get in contact? So we did talk a little bit but our journeys, we just didn't manage to see each other very much, and we had very different deafness journeys, being that Ela was at the time only moderately deaf in her left ear and her son was profoundly deaf, so they were going through the route of cochlear implants, and we were at the time just monitoring whether we needed to do anything at all, so we kind of drifted apart a little in that. Recently, actually, I've joined more kind of Facebook groups,  to kind of see if I can join some sort of community. But I guess because we've had a good experience so far with everything that's been going on with Ela we've been, we haven't really felt like we needed to find a community of people necessarily.

Hannah

Thanks so much to Abby, Claudia, Kim, Joe, Louise and Waqas for sharing their experiences and thoughts with us. It's great to hear about the support families have had from professionals, but also from other families and online groups.

Amanda

Yes, it does make such a difference to know there are others out there with similar experiences and that there are supportive professionals to help. Next time we'll be talking to parents about how decisions evolve over time. So do join us for episode four from Little ears, big challenges: navigating mild and unilateral deafness, here on UCL Minds.