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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Deafness

21 replies

mrsmalaprop · 10/02/2008 15:52

Hi all. My DS (2 and a half)is profoundly deaf and due to have his cochear implant operation sometime in the next few weeks.

I just wondered if there are other parents of deaf children on here willing to have the occasional chat about TODs, Hearing aids, Implants, Statementing...etc.

I could sometimes do with talking to people who understand!

OP posts:

lottiejenkins · 10/02/2008 17:28

Me Me!!!
I'm the Mum of an 11 yr old Deaf son hes not implanted though but do chat away to me....
Also contact the NDCS they have their ParentPlace site which can help you too!
ndcs.org.uk/

smartiejake · 10/02/2008 18:25

I am a ToD if you have any questions about education. I have worked with lots of deaf dcs with CIs.
Good luck with the CI op.

lottiejenkins · 10/02/2008 18:29

Hi Smartie nice to see more people with deaf connections on here!! My son goes to Royal School in Margate!!

Original poster

mrsmalaprop · 10/02/2008 18:31

Thanks both of you. I do go on the NDCS one sometimes, but find it's always the same people on parentplace, which is fine, but I thought I would cast my net a bit wider.

I would be interested to hear from you, Smartiejake. We are so fed up with our ToD at the moment to the extent that we are not totally sure what she's there for. She has her own agenda about everything and won't inform us about things if she doesn't agree with them. It is so frustrating. Can we ask for another one to be assigned?

OP posts:

smartiejake · 10/02/2008 18:33

I visited margate once- what a lovely place. I have always fancied working in a school for the deaf but they don't have any Essex.

I am the teacher in charge of a UHI attached to a lovely junior school. ALso teach music. I absolutely love it.

smartiejake · 10/02/2008 18:44

I assume you are talking about a peripatetic teacher of the deaf. SOme of these I know do rather have their own agenda. She has no right to tell you what you should be doing. Her job is not to tell you what to do but to do but to inform you of all your choices about your son's future (communication issues, choice of school placement, things you could be doin to help etc.) and if she is not doing that I would definitely ask for someone else. I would also second getting some advice from NDCS they are very helpful and will offer impatial advice.

Having said that you will be assigned a tod from the hospital where your son has the op who will follow his progress/ deal with his rehabilitation for some years and perhaps you could ask him/ her for advice. Also if you have a local UHI where you live, there may well be ToDs who could give you some advice.

smartiejake · 10/02/2008 19:03

Where is he having the operation done?

geogteach · 10/02/2008 19:20

Me too. My nearly 7 year old is severe/ profound, we will end up with a CI but have just turned down an assessment as my son is quite anti, I am hoping as he gets older he will understand the benefits.
I am considering retraining to be a TOD when I eventually get round to going back to work.

Original poster

mrsmalaprop · 10/02/2008 19:55

He's having the op in Nottingham. It has been a horrible decision and we are only going ahead because they are implanting his left ear, which has so little hearing that he wouldn't lose a lot if it didn't work. We want him to be bilingual and he signs at the moment. He wears aids, but doesn't benefit enough to develop speech.

Why is your son against it,gt?

Thanks for the advice, SJ. You are right that he will have a ToD from the implant team and I think they will be more helpful.

How does your son get on at the Royal school, LJ? We are trying to decide on schooling at the moment and it's such a thorny issue. We have just received his statement and have a week to name a school. We are in Birmingham and are considering a school for the deaf nearby. It isn't a strightforward decision at all!

OP posts:

geogteach · 10/02/2008 20:03

He is against because he doesn't want the op and he doesn't really see his deafness as a problem. He uses aids well and has good speech, unfortunately though he has a progressive loss so it is really a question of when rather than if. DS is at mainstream, he has no statement as the amount of help he would require is below the minimum for a statement. At the moment he has 3.5 hours TA time a week.

smartiejake · 10/02/2008 20:26

Mrsm. The CI team at Nottingham are absolutely brilliant. I have found all the SALTS and ToDs from there very supportive and helpful.

Geog- A girl I work with was recently turned down for a CI on the strength that SHE didn't want to have it done. Her parents were gutted.
However your son already has a good level of speech and language and is doing well academically the CI is less crucial at this point.But as his hearing deteriorates he may well need more support especially as the pace of the curriculum hots up at about year 4. He may well make the decision as he gets older for the CI. If he is at a mainstream school he may well not have been exposed to others with a CI. Does he have any deaf friends? If not it might be good for him to get together with other deaf kids who may well have a CI and can share their experiences with him.

A father of one of my pupils has recently had one fitted. He was born born profoundly deaf but had a little usable hearing in one ear which disappeared overnight about two years ago. He absolutely loves it and I have noticed that his speech, which was quite hard to understand before the CI, has really improved.
His younger daughter has had one fitted and now my pupil (8) who has poor speech but excellent language/ reading/ general academic ability has decided to have one having seen how well his father and sister do with them.

lottiejenkins · 10/02/2008 20:39

My son loves it at the Royal School he went when he was seven, i was more worried than he was it is a FANTASTIC school!!

Original poster

mrsmalaprop · 10/02/2008 20:57

It's so political, though. Our ToD has really pushed the school for the deaf and we loved it when we went to visit. We pretty much decided then and there, but the SALT is concerned that they are too BSL centred and don't give implanted and aided children enough support with their listening. We are a bit torn, but I think we will still go with that school. After all, his statement clearly states that he is entitled to a proper SALT programme, so we could insist on it, couldn't we? Or am I being Naive?

OP posts:

smartiejake · 10/02/2008 21:05

Yes you can insist. Even if it goes to tribunal- you only have to state a few plausible reasons for why your choice is right for your son and they will crumble. A tribunal is SOO expensive to put on that it probably won't go that far if you put your concerns and reasons in writing.

And yes a SALT programme is obligatory if it is on his statement. Be proactive and you will get what you want.

lottiejenkins · 10/02/2008 21:24

When I was trying to get my ds into Royal School, i was having problems due to banding. In the end i got so cross i rang up our local county councillor and explained the situation said right ive voted you in what you going to do? within two days i had the place confirmed by letter and phone!!

smartiejake · 15/02/2008 18:22

Have you got a date for ds's CI op yet Mrsmalaprop?

smartiejake · 15/02/2008 20:31

bump

yurt1 · 16/02/2008 13:21

I'm biased but I think special schools have lots of advantages if a child's needs are in any way complex.

Just looked at the Royal School website- looks great.

yurt1 · 16/02/2008 13:23

oh there's loads of royal schools Well the websites I've looked at look good

lottiejenkins · 22/02/2008 11:51

www.rsdcm.org.uk/portal.aspx?mlmenuid=2000&TargetPortal=39&ApplicationID=33&MID=&offset=
Hows things going mrs malaprop?

smartiejake · 29/02/2008 14:26

Has your son had the op yet Mrs Malaprop?

Funny you should moan about peri teachers of the deaf. I've just been to a meeting with some other regional ToDs and they were all saying the same about some of their peris who work with the preschoolers.

Said that quite often peris do not give parents a balanced view of what educational settings are available.

We find alot of profoundly deaf kids initially thrown into their local mainstream schools have several years of struggle and failure before they find their way to us in the enhanced provisions claiming they didn't know we existed.

Of course there are some profoundly deaf kids who thrive in mainstream but the options should be explained to parents so they can make an informed decision.

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