Anyone here have a child with a hearing impairment?

Long story short, DS needs hearing aids for a moderate sensorineural hearing loss. I only found out yesterday. I was shocked, I knew he had some hearing loss, but I didn't realise how bad. He responds and reacts so well to sound.. I also know that without the hearing aids his speech would be affected quite badly, so we pick them up in 3 weeks.. I am scared now people are going to treat him differently. Do things like yell when they speak or treat him like he's slow.

I know that after all the challenges he's had, this is nothing, he is an amazing healthy bub who's development is coming along beautifully, better than expected. I am very lucky to have him. I was just a bit shocked.

Hi BAL

My sister was hearing impaired.

Can I ask if they know the cause of Jett's hearing loss. Was it the gentamicin? That's what caused my sister's.

I really hope you find someone to chat to to debrief.

I can give you my mum's number if you like. I am sure she would be more than happy to chat.

Take care x

N2L, yeah they think it was a combination of the gentamicin, long term ventilation and hypoxia. Or it could be genetic.. They want to do some tests for that, but I'm pretty satisfied that it was from him being prem.

How significant is your sisters hearing loss?

Our accountants grandson wears hearing aids and has adjusted really well. The hardest thing is getting him to keep them in.
It's good that this was found so early so he can be helped before bad habbits start.
After a while people will not even notice them.

It is natural to be a bit shocked but I know you will handle the adjustment with flying colours as will your beautiful and precious son

My sister died when I was in primary school so unfortunately, I cant answer your question :(

I know my mum always referred to her as being "profoundly deaf" and she had a hearing aid as a toddler. Not sure if that helps...

OMG N2L I'm so sorry :(... I only asked because I noticed you said 'was'. I was thinking maybe her hearing got better :(

Rivlas - I'm sure it will be fun with a curious baby with wandering hands. This is why I want to learn some sign, so if he doesn't have them in we can still communicate. I'm hoping the sooner he gets used to them the better.

No problems BAL xxx

DH is deaf in one ear - he was prem and it was attributed to gentamicin. He didn't need an aid because his other ear is fine...but he's been talking lately about looking into one as he really struggles to communicate when there's lots of background noise.

I'm sorry to hear DS's hearing is impaired...but being so young I'm sure he'll adapt really well :)

My DH has worn hearing aids for past four or so years - people never even notice them. My mum can only hear in one ear (since birth) due to a nerve growing in one place and a hearing aid would do nothing - you have to stand on right side of her and she does lip read a little but copes pretty well. DH's mum hearing is bad, I was always told was a diving accident but I suspect there is more to it due to DH's hearing loss and the fact hers seems really bad (far worse than my mums).

Anyway what I wanted to say really was is interesting about you saying how responsive to sound your DS is, as due to above history both mine have to have additional hearing tests - when DS had his a month or so ago - they said seemed to be some loss but could be due to middle ear infection clearing up - and I was really quite surprised he showed any at all because he seemed to respond to sound so well (we are having follow up for him and DD in a couple of months). I always thought it would be easy to notice any hearing loss especially in young children (DH took us ages to realize because he had become so adept at lip reading and filling in the blanks he wasn't hearing that he didn't know he wasn't hearing them) but have seen it appears is not - so I understand the shock a little.

We don't have hearing loss but I can relate to your fear of having DS treated differently and/or as if he's slow. Our DS is almost two and not yet walking. We've just seen relateives interstate with one repeating numerous times "he's very bright" as I think they were expecting the worst. I fluctuated between feeling "yes, that's our bright little boy" to "grrr, what were you expecting".
I do find myself getting defensive of my son and his accomplishments. At times it's harder to keep that in check than others. I know he's a happy, healthy boy who just has a difficulty in one aspect and dont want people to assume that means more than it does.
You and Jett have come so far together. You are a good team and will get through this together too. Xx

Thanks for support :) I have been reading through some of the material I have been given so I have plenty of access to support. I might access it to begin with but because I don't want it to define him, I don't think I'll go to specific playgroups/events etc.. I'll just see how I go.

My parents are both Deaf and I grew up with many Deaf and hearing impaired friends.

The Deaf community in Australia is very strong if you are interested in being a part of it. AUSLAN is a great language and even though he's only hearing impaired I'd still encourage you both to learn. It can help immensely in the future as it is a method of communication. I have a few friends who are hearing imparired and were never taught AUSLAN. When they got to mainstream schools, their hearing and speech wasn't good enough to learn or communicate. As such they had no way of communicating with people and then had to learn AUSLAN as teenagers.

Sorry if this is rushed, I'm finishing work now. PM me if you want more info or just to chat.

Fiona

Hi BAL

my youngest was diagnosed as moderate to severely deaf at 5 months old, and had hearing aids until 15 months when they discovered his deafness was conductive and not sensoineural and hence he needed grommets and not aids. When he had his aids I did notice a few people staring at him but like Jett he was blessed with incredible above average cuteness so I put some if it down to that. Most kids asked what they were for and just told them, we decorated them with dinosaur stickers and told people they were like bionic ears. Kids were interested and kind, it was the parents that made a big fuss.

I did start to learn Auslan though, because although he wouldn't need it the research I did suggested that lots of kids with hearing loss like to socialise with other hearing loss kids and so I wanted boytwin to be able to fully emmerse himself in the deaf community or in the hearing community. I also intended for the entire family to learn Auslan so that his friends would feel welcome and understood in our house but as his diagnosis changed so did this intent. I had decided that unless his communication was massively affected that he would go to a regular school though, as being one of 4 I didn't want to separate him from his siblings. That said there are some considerations for school, things like do they have carpets and curtains as this will help him be able to hear better as they absorb background noises.

If you have any questions please PM me.

Trav
xx

I am happy to learn Auslan now and I have got a chart of some simple signs that we will use but my question is if the hearing aids help him to hear why does he need to socialise etc in the deaf community? I'm thinking the more I focus on being 'in' with the deaf community the more I am segregating him? Does that make sense? He should be able to hear fine with the aids and communicate so there shouldn't be an issue for him to play with kids that don't have a hearing impairment. Maybe I'm still in denial a bit? I am really surprised how much this diagnosis has affected me.

I understand exactly what you are thinking BAL, but what I learned when I researched was that a lot of kids (not all) prefer to be in the deaf community where they are one of many, rather that try to integrate in the hearing community where they are the deaf child and therefore different from their peers. Quite a few deaf children will take out their hearing aids to fit in more with deaf children I wanted to give boytwin the choice about who he wanted to associate with.

Thanks Traveller, that makes sense..

For my parents and friends, it's mostly about communication. My Dad is profoundly deaf, my mum hearing impaired. They prefer to hang out with people that they can fully communicate with. My mum is very oral, can hear quite well with her hearing aids on and people can understand what she says when she talks. However she still prefers AUSLAN as it means she doesn't miss anything that people are saying. Even though she has good hearing, it's still not the same as understanding everything that people are communicating with her.

I also know of a few Deaf teenagers that took out the external part of their cochlear implants as they weren't really helping them much anyway and they wanted to be Deaf, not hearing.

It can sound a bit confronting and you are probably processing lots right now. At this stage, I think that Deaf playgroups, social groups when older etc are more about giving him choices than segregating him. At least then Jett has had exposure to a range of people he can hang out with and then he can make his own decisions based on what he feels most comfortable with.

People will sometimes try and speak loudly to my dad or talk to my mum with her back turned. Some people think my parents are stupid because they are Deaf and automatically turn to me in any conversation so I can translate. I see my role as helping to educate these people about how to communicate with Deaf people effectively. Basic stuff like speak slowly to my Dad and look at him, no point shouting as it doesn't make a difference. Make sure you have Mum's attention before starting otherwise she won't realise you are talking to her. If someone is particularly rude, I'll just walk away so they have no choice but to communicate with Mum and Dad as I've said. Mum and Dad are absolutely able to assert themselves if they don't understand what someone is saying and conversations can take a while in shops. However that's the way things work with them and they have as much right as everyone else to understand what is being said to them by a hearing person.

Thanks Fabfiona.. I think it is just processing. I am not sure why i am struggling so much. It could be so much worse! I guess the fact that he is now 'special needs' takes some getting used to. I don't know anything about hearing impairment really and how will impact on his life. I want him to be 'normal' whatever that means ;).. You make a lot of sense when you say I would be giving him choices. I have a social worker, I sent her an e mail so she should get back to me next week. She can tell me where to start. Honestly I just don't know. I don't want to have this huge label hanging over our heads, I don't want him known as 'the deaf kid' or to be treated like he is stupid, but I don't want to deny his hearing impairment either, as that could disadvantage him too.

I appreciate the advice.

I was thinking about this last night and you. Hope the new day has brought some light into your thoughts.

I know that you want Jett to be normal. Every Deaf and hearing impaired person I know is normal. One is an Olympian, a few are lawyers, two have received medals of the Order of Australia. My mum is national president of Deaf Australia, the peak advocacy organisation for people that use AUSLAN in Australia. Some are dead*****s who don't treat their partners properly and some have trouble keeping employment. Normal is whatever Jett decides.

Early intervention is critical but be wary of well meaning social workers and other professionals in this sector who try and band aid over Jett's hearing loss by telling you that he will be completely normal. All of these things will make it much easier for him when he grows up, but it doesn't take away from the fact that he can't hear everything so it's important that he have a range of tools at his disposal (including AUSLAN if you decide) as these will all help his choices in the future.

Hi BAL, good on you for asking about this. The more support you get, the easier it will be. I'm not sure what state you're in, but I'm a Teacher of the Deaf in WA with the WA Institute for Deaf Education, so if you have any queries about education I am very happy to help.

One
thing I can recommend though is early intervention. Whilst a moderate loss might not sound too bad, it can have some big impacts on learning. I'm not saying that's the norm, don't want to get you stressed or panicking or anything as most MHL children do quite well. Just want you to be aware that there are support services out there and they are amazingly helpful. If you PM me where you are I can find out the WAIDE equivalent in your state :)

Another thing I can say for now though is, although the HAs are a pain, they are incredibly important, particularly in these early years of language development. Full time use (obviously not when sleeping) is much better than part time use as the neurons are fired in the brain when sounds stimulate and neural pathways for hearing are formed. But they go away without the stimulation being constant, so consistent HA use is best. I hope I've been helpful and don't come across as bossy or anything! :) let me know if you'd like more info :)

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Normal is whatever Jett decides.

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Yes, very true, what I mean is I want other kids to treat him as 'normal'.. I am worried he will be 'different' so treated as such. I s'pose if he isn't the deaf kid, he'd be the fat kid, the short kid etc.. Kids always pick on something.

Phebee - I am definitely getting early intervention. No doubt about that. He is getting his hearing aids ASAP, and I am liasing with speechy's etc.. I have lots of info on websites and links etc.. I guess I don't know how much intervention I need for his level of loss. I mean I am willing to learn sign language etc, but I am just confused because my understanding is: He can hear but without aids he only hears about 50% of conversation and even less if there's background noise. If he doesn't have aids it will affect his speech and learning.

I am still blown away by this. He 'appears' to have no issue hearing! He ALWAYS responds to sound. Toys, my voice etc and is very reactive. To think he's missing about 50% seems so strange. It seems weird to think he would actually need to sign to communicate. Anyway.. Whatever it takes :D I am already signing for eat, drink, cat, milk, so that's a start :D

Another question...

I found a good site that shows Auslan signs, I learnt I love you, mummy, Jett, breastfeed :) but I just read on Deaf kids Australia that they run sign language classes. Is it worth it? It is $90 for the baby sign one.. Actually I couldn't do it anyway, classes are from 6 -8pm.. I couldn't have bub out in the cold and can't leave him with anyone.. I guess I'll just teach myself :)

If you have an iPad there's a cool app aimed at babies that uses proper AUSLAN. Otherwise there are heaps of good DVD and book resources available.


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AUSLAN have a great online dictionary for learning individual signs which I found great but I had decided to go to a class once he was older. I don't think there is any rush to go to classes until he is older and can he left with someone else.

If you see a speechie they might teach you some as well, I know there are plenty around that know it and can/do.

My daughter doesn't have hearing issues and hasn't learnt AUSLAN (yet, it might be something we need to look into soon) but she has a speech delay and impairment (12m+ behind), she uses makaton signs to supplement communication which we both learnt at speech (she has 2 sessions every week). Kids are the easy part - at a young age any difference is cool, neat and interesting - all the kids at the park want to learn DD1s signs and stuff. Adults can have their own perceptions, my DD1 being tiny and delayed often gets mistaken for much younger and treated as such which can be frustrating because her comprehension is well advanced and her physical ability is right where it should be which leads to unneccesary judgements say for letting her go off on equipment alone at the park or something and I've cracked it a couple of times "she's 3 and a half, she can understand everything you're saying, she can climb and slide and run and jump, she just has a different way of telling you about it".

:hug: it is really hard finding out your kid has something that could makes things more difficult for them, it is natural to feel concern for them and need to debrief about it. I still have days where my daughter's condition brings me to tears - good and bad. DD2 already makes proper 'sounds' and it has been so hard seeing what I've missed with DD1 but I try to remember all the things it has brought us - learning signs will be useful for DD2 before she can talk, speech sessions show me different ways to interact with my children so they can learn through play... and of course, it could be worse but yeah, doesn't mean it isn't hard or that it is easy to accept right away. You're allowed to feel what you feel, you'll both get through it :)

Hi BAL, just wanted to say good luck with it all :hug: another bump in the road along your journey together which will make you yet again even stronger ;) xxx

Hey lovely,

How are you going? Did the social worker come back with anything useful?

Fiona

Hi :) She just called me, i'm seeing her at 12 today..

Hi there,
How I wish this conversation was going on a few years ago but I have the most amazing success story to share now that I'm so far along this road with my profoundly deaf born daughter (for the uninitiated, profoundly deaf means completely, utterly deaf as a post).

if you want any specific details, feel free to ask me absolutely anything but I just want to tell you that once the initial shock wears off and whatever decisions you make that feel right for your family, it will all become second nature. If your child needs to wear hearing aids, there is very little stigma attached and on littlies they look cute. Jasmine was fully diagnosed and confirmed As profoundly deaf by three weeks, when she was fitted for her first hearing aids. She was born sooo little, so can you imagine the size of the aids. Basically most of her hearing aid history isn't going to fill you with confidence, as I started with a newborn and had absolutely no response or indication that she could hear, so basically for almost twelve months while we were jumping through hoops waiting for cochlear assessments etc, she had no access to sound.

Fast forward another sixteen months and my profoundly deaf child with cochlear implants, hears absolutely everything and her vocabulary increases daily. She now says at least three hundred words...the latest of which is the most amazingly, spectacular word in the world...Mumma:) whatever challenges you are faced with, you will overcome and you will become the expert and advocate in your child's life, just as you are already. If you receive attention over the hearing aids, hopefully you can use it as a chance to educate. People are usually just interested in the unusual. We chose not to hide jazzys cochlear implants and didnt get a colour to match her hair or skin. It's out and proud and of course we are constantly asked about them but we didn't want jazz to feel that we wanted them hidden. She can choose that when she is older if she decides but for now we choose to educate and share with anyone that asks and just last week, jazzy overheard a couple of old women talking about her and bless her little heart, she lifted her hair to show them.

Good luck and all the best.

Thanks Murph01.. DS got the hearing aids today, they look cute.. I am glad you have a success story. My decision now is choosing which early intervention route to go down.. I have an interview next week, i'll look at all my options and decide from there..