I need advice please

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sazza

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Hi my name is sarah I am not deaf or hstd of hesring my 5 year old son is he is also autistic and doesn't speak just growels alot.
I have recently been told that he needs cochlear implant if he has any hooe of being able to talk. We are bothe learning bsl together he is much better then me lol.
I dont realy know anything about the implants and would just like some oppinions bothe for and against :)
 
I don't have deaf children but if my child was deaf I would not do a cochlear. I think the surgery is much too invasive, I wouldn't want to put my child through an unnecessary surgery. Sign language is a beautiful language, and children usually pick it up faster than spoken language. When my daughter was a toddler she had difficulty speaking at first. She would get angry and frustrated because she couldn't communicate with me. So I started signing with her and she completely changed, she could tell me what she needed and she was much happier. The cochlear implant only helps them to hear electronically, but it doesn't fully turn them into a hearing person. I also worry about what the possible long term side effects might be. Anyways I'm no expert but that's just my opinion on the subject. Good luck to you and your son.
 
mnshorten said:
I don't have deaf children but if my child was deaf I would not do a cochlear. I think the surgery is much too invasive, I wouldn't want to put my child through an unnecessary surgery. Sign language is a beautiful language, and children usually pick it up faster than spoken language. When my daughter was a toddler she had difficulty speaking at first. She would get angry and frustrated because she couldn't communicate with me. So I started signing with her and she completely changed, she could tell me what she needed and she was much happier. The cochlear implant only helps them to hear electronically, but it doesn't fully turn them into a hearing person. I also worry about what the possible long term side effects might be. Anyways I'm no expert but that's just my opinion on the subject. Good luck to you and your son.
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What she said...exactly what I would say. I am deaf and have met many deaf children with CIs who were never able to pick up speech skills. Having a CI doesn't guarantee if a child will develop speech skills or not.

Born with a severe-profound deafness..who has near perfect speech skills. Can carry on conversations using spoken English. No CI here....didn't need one to be able to develop speech skills.
 
Not to mention that autism affects spoken language skills. It's hard...does he have severe autism?
 
sazza said:
Hi my name is sarah I am not deaf or hstd of hesring my 5 year old son is he is also autistic and doesn't speak just growels alot.
I have recently been told that he needs cochlear implant if he has any hooe of being able to talk. We are bothe learning bsl together he is much better then me lol.
I dont realy know anything about the implants and would just like some oppinions bothe for and against :)
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My advice would be to see more Doctors and make sure that your child can benefit from an implant. Especially being autistic. If they agree that your son can benefit, I say go for it! CI's are wonderful technology. It does require surgery, but for the most part that surgery is very minor. The best advice would be to ask the Doctor about the benefits and risks and weigh those. Also make sure to see a Dr to make sure that your is healthy enough for surgery.

Good Luck!
 
Thankyou all for your comments I realy appreciate them . To answer acouple os questions his autisum is so suvier that he hss the rolling eyes and rocks he is very ocd and repetitive has alot of asperges trates but because he doesn't speak it is not considered. I do believe his lack of speach is partly down to his hearing but also his asd however the doctors disregard this and say all todo with hearing.he is realy good with sign and will always encourage it regardless of what we decide I worry tho that apart fron immediate famiy his world will be so small as we dont know anyone else children or adults who are deaf or hard of hearing.
Thankyou again you have a lot to chew over x
 
Sazza - I'd also look at the various studies on the "success rate" (meaning usable speech and hearing) of CI in Autistic children as it's very different (significantly lower).

I do know a lot of Autistic children who are hearing but use ASL to communicate because of the way they process language.

At the end of the day the choice of CI or not will be up to you, however I'd make ASL fluency a priority.
 
Personally, you know the child, has he been diagnosed as autistic?

I am deaf with CI and I work with autistic teenagers (moderate to almost profound) from 16-19, about 5 of 20 can't speak or even sign as well so communication with them is impossible and frustrating for them! So its great that your son is getting the language he needs to communicate. If he's autistic it's better to stay on one track at a time, overwhelming/over stimulate posses more difficulty. Do speak as you sign he may pick it up at his own pace.

Although CI is an amazing technology but it doesn't guarantee any speech... It gives sounds but speech comes with hard work.

I was born profoundly deaf but dx at 2 and it was 6 months before I was given any aids to suit my loss , my mum learnt BSL. When I discovered my voice at 5 (yeah that late) and said chocolate clear as day.... That's when my spoken language sky rocketed. I used SSE since then, now as adult, i was implanted at 30, I use SSE/BSL with deaf friends and normal speech with hearing colleagues/friends, I do sign to my hearing students as much as possible in hope they would reply.
 
I have never been told where on the spectrum ellis is he enjoys being with ppl if he knows them eg school but acts oddly at play areas he retreats into his room and own world for a day ot t we o at a time he obsesses over maps and numbers and food touching ect ect he laughts when he finds somthing funny ect ect but iv never been told where on the spectrum he is I do feel his sutisum is partly to blame for him not talking but no one will listen to me, his hearing loss is server I no that.

So the doctor who said that the best chance for him to speak is a ci and if he doesn't do so within the next year he probably wont isnt necoseraly right? Hi is 5 now
 
mnshorten said:
I don't have deaf children but if my child was deaf I would not do a cochlear. I think the surgery is much too invasive, I wouldn't want to put my child through an unnecessary surgery. Sign language is a beautiful language, and children usually pick it up faster than spoken language. When my daughter was a toddler she had difficulty speaking at first. She would get angry and frustrated because she couldn't communicate with me. So I started signing with her and she completely changed, she could tell me what she needed and she was much happier. The cochlear implant only helps them to hear electronically, but it doesn't fully turn them into a hearing person. I also worry about what the possible long term side effects might be. Anyways I'm no expert but that's just my opinion on the subject. Good luck to you and your son.
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Completely agree with this as far as signing ( I dont know much about the cochlear Implants myself) but from experience, My son (almost 3) signs more than he speaks, he was a late talker but he really picked up the ASL faster than anything else, he was frustrated trying to tell me what he wanted and ASL was his opportunity to communicate with me.
 
sazza said:
Thankyou all for your comments I realy appreciate them . To answer acouple os questions his autisum is so suvier that he hss the rolling eyes and rocks he is very ocd and repetitive has alot of asperges trates but because he doesn't speak it is not considered. I do believe his lack of speach is partly down to his hearing but also his asd however the doctors disregard this and say all todo with hearing.he is realy good with sign and will always encourage it regardless of what we decide I worry tho that apart fron immediate famiy his world will be so small as we dont know anyone else children or adults who are deaf or hard of hearing.
Thankyou again you have a lot to chew over x
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Can you relocate to a School for Deaf Children? I'm not sure if the UK may have schools specificly for Deaf Plus kids....Here in the US, we have Austine School for the Deaf that has a Deaf Autism program.
There are also Deaf Children organizations..
 
and I would strongly strongly suggest getting him into either a school specificly for Autism and or Deafness......He might be able to swing it if he was just dhh in the mainstream.....but he does need a specialized educational placement.
 
sazza said:
I have never been told where on the spectrum ellis is he enjoys being with ppl if he knows them eg school but acts oddly at play areas he retreats into his room and own world for a day ot t we o at a time he obsesses over maps and numbers and food touching ect ect he laughts when he finds somthing funny ect ect but iv never been told where on the spectrum he is I do feel his sutisum is partly to blame for him not talking but no one will listen to me, his hearing loss is server I no that.

So the doctor who said that the best chance for him to speak is a ci and if he doesn't do so within the next year he probably wont isnt necoseraly right? Hi is 5 now
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If him being able to speak is important to you, I would suggest you go for the CI. While there is no guarantee, it will give him a better chance at developing speech. At least there wouldn't be any "what if"s.

But in the meantime, continue with ASL. CI is not 100% and with his autism it is quite possible he still does not develop speech.

Good luck!
 
Ye we are going to look at a mainstream schook that has a special unit fir the deaf it is a bit of away especially as my daughter will be in our local school by then and moving at the moment is not an option but we will sort somthhing, the other obstacle is a statement of spcial needs wich over here you need to attend a specialist schoool but somthhing that the powers that be dont like to give, its a very lengthy prosess with no guarantee at the end.


Thankyou again ppi for all your advise support and coments
 
It might be worth contacting Burwood centre to talk about your child, feelings, the experience with doctors you had. And hopefully they will guide you to the right places.


In my job we have 3 classes, one is very small, 4/5 kids, mainly 1-1, doesnt interact,they can be violent hence team teachh trained staff can only work in this class, I am trained and cover break times etc in that class. My class, 7 kids, loving, attentive, can talk, sign, do maths/ English, few subjects, interacts well, but life skills are very basic. Other class are non verbal non signer but very sweet natured, doesn't interact much but are working on it. Overall, They all are very individual in their autistic tendencies, OCD habits.
 
South of England.

If you google up burwood centre and see if that's what you are looking for. I used to work at school that connects to burwood centre. They may have had assessed few deaf kids with autism tendencies. So I guess no harm in talking to them.
 
sazza said:
Ye we are going to look at a mainstream schook that has a special unit fir the deaf it is a bit of away especially as my daughter will be in our local school by then and moving at the moment is not an option but we will sort somthhing, the other obstacle is a statement of spcial needs wich over here you need to attend a specialist schoool but somthhing that the powers that be dont like to give, its a very lengthy prosess with no guarantee at the end.


Thankyou again ppi for all your advise support and coments
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On the other hand, he's Deaf plus so it might be a bit easier for him to get statemented.....
 
I'd be hesitant implanting a child with autism. I've met two children who were deaf and autistic, both implanted with no benefit.

If I were you, I would research across the country and world statistics on (if they exist) autistic children and CI's. If that doesn't exist, I would call (or ask your Audi) various major CI centers and see what their experience has been.

It is very different for a child with autism to get an implant than it is for a child who has no other issues.

I would encourage you to learn BSL (if you haven't already).

Have you guys looked into a Dynavox? I'm all for encouraging direct communication through a visual language, especially for a child with Autism. However, a Dynavox could be a great supplement that could begin to enable him to communicate with you guys.
 
Another thing that comes to mind, the ear foundation, they do a lot of researches and they might be able to pin point you to the right directions.

As csign had suggested dynavox is fantastic, pecs too. We are currently working on apps for ipad suitable for their communication needs, we only got the iPads recently at school.
 
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