Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

SN children

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

Flip

Original poster

it is always speach

18 replies

2shoes · 15/08/2007 22:42

noticed on another thread that i wasn't the only one who wished for speach. I know that there is no cure for cp. but for her to speak.............

OP posts:

magsi · 15/08/2007 22:46

I would also give the skin off my back for my ds to speak. You can put things in place for the physical, but its just so cruel if they can't just 'be'

Nat1H · 15/08/2007 22:48

I feel exactly the same. Don't mind if he's in a wheelchair all his life, but if he can't speak he's knackered! Found out results of an MRI yesterday, and upon doing my own research I think he may never speak properly. Have worried about this for ages, but now it seems more real somehow.

geekgirl · 15/08/2007 22:50

yes, yes, yes - I can deal fine with everything else but the lack of speech just breaks my heart

magsi · 15/08/2007 22:55

Nat1H

I remember when we had the results of ds1's MRI (5.5 and has cp - hemiplegia). The damage was on his left side of the brain and the speach centre was almost completely gone. We were painted a grim picture at first but actually, he does vocalise really well and will 'mouth' some words. He will get the vowel sounds right, its just using his toungue which is not happening. I do have a feeling (and I never used to) that he will be able to use some words when he is older. I think the brain is an amazing thing and constantly shocks us all with its ability to re-wire etc.

Original poster

2shoes · 15/08/2007 22:55

dd works so hard to speak. sometimes words are there. mum is her latest. but I know it will never be full speach. and an untrained ear might not understand it.

OP posts:

gess · 15/08/2007 22:58

Hi 2shoes

DS1 tries hard to speak. But he only has vowel sounds. If he could speak it wouldn't be sentences, but I think we'd have something to build on. He's been trying so hard to share things he likes with me recently (which for an autistic child is hypothesis breaking) but it's justb"ehe he ehe eh" with pointing and I have to guess.

Having said all that I also know children with speech who are every bit as disabled and challenging as ds1- so I know it isn't always the key. IN his case though I think it would alter his entire life prospects. Even single words.

magsi · 15/08/2007 23:10

I think giving them communication is the thing. Our ds uses a communication aid quite well and is building up to 2 to 3 words at a time. Of course though we know what he means and I am sure I will spend my life as his 'interpreter' for people.

Original poster

2shoes · 15/08/2007 23:18

dd has a c.c.s and is trying new switches so hopefully she will be able to use a computor aid. but it is so heartbreaking when she wants so badly to talk..........funny her "hurry up" an No is so clear.

OP posts:

magsi · 15/08/2007 23:28

like we have already said, there seems nothing more cruel and frustrating than not being able to speak but we have to remember that talking is not the only means of communication, it may be the most effective and quick, but not the only one. I went to a local sn meeting earlier on in the year and their was a lovely young man who was a quadrapliegic (sp?). he used a 'pointy-thing' on his head with an infra-red beam and moved his head until he was pointing at the words he wanted to say. It was fantastic and he was communicating really well. I remember his amazing sense of humour that came accross in his communication and I also remember thinking that next time people look at a severely physically disabled person in a wheelchair, don't assume the mind is not fully capable even if the body isn't.

Original poster

2shoes · 15/08/2007 23:30

oh dd's mind is capable she will do it if it is possible. by what ever means.

OP posts:

magsi · 15/08/2007 23:34

It is still probably the worst thing in the world though isn't it. I just try to make sure I am there for ds to moan at, take out his frustrations on, cuddle, kiss and love. If I could have one wish.....

gess · 15/08/2007 23:41

There's a great book written called 'autism and the myth of the person alone' it's interviews with so called severely autistic individuals. In the main non-verbal, but able to use things like typing. I find Lucy Balckman inspring- she is so like ds1 - even as an adult- and yet she's gota degree, written a book, been able to find a way to control her thought and language and communication. I think (now I've read more) that children like ds1 are very like chldren with CP. He can move etc- but he cant control his responses on demand on time, so he has thoughts etc but he can't get them together into a recognisable form.

He communicates well with us, I'd just like hik to be ablke to boss social workers around in the future as I think they won't out the effort into understanding him- hence my wish for speech.

magsi · 15/08/2007 23:44

gess, there are many things he could 'say' with his fingers

gess · 15/08/2007 23:47

PMSL. If he does get some speech I think I'd love it to be f off!

Sidge · 16/08/2007 11:29

My DD has no speech she is now 3.5

I would give anything to hear her say Mummy.

Or bugger.

Or fishcake.

Or anything really!!

She now has a TCA (total communication aid) that we are learning to use, but nothing would beat hearing her voice.

I think it also makes socialising with her peers incredibly hard, if she can't talk to them she must find it hard to play with them. I know she doesn't mix well with children and much prefers adult company.

maybe one day...

magsi · 16/08/2007 13:47

Sidge.

Actually ds1's communication aid is proving to be a bit of an 'attraction tool' to the other kids and they are fascinated by it. Ds1 was in a split placement but is due to start full time at ms from September (not shitting myself too much!). I have observed him in class and the kids will always come over to him to watch him 'talk' etc. Sometimes he gets protective of it and will not let them look but other times he will 'show' them what to press and it has given him a confidence i never thought I would see in his ms situation . I just wish they could give us a 'little boy's voice' instead of it sounding like a flippin robot or an american grown woman!

Sidge · 16/08/2007 14:15

Thanks Magsi - it's nice to hear how other children do with their TCA's. We haven't had ours long, so still getting used to it!

She had it for the last few weeks of term (she is at preschool) and got on very well with it apparently - I believe the other children were fascinated by it!!

Which one do you have? We've got a Dynovox (on loan) and you can change the voice, but to be honest they all sound a bit robotic. But it is lovely to hear her use it to tell us what she wants

magsi · 16/08/2007 16:18

We have a 'Future Pad'. It looks like a mini computer with plenty of rubber protection round the edge and is Windows based. It uses a 'grid' system the same as the Dynavox and it works by ds1 choosing symbols and words which form a sentence accross the top. He then presses the 'speak sentence' button and it 'talks' the sentence. There are several voices to choose from which you can alter the pitch and speed of. We have played round with them to make what we think is closest to a little boys voice but it is not very good. I programme it every week to say what he has done at the weekend so he can tell his classmates and it really makes him feel involved. It is supposed to last him right through schooling and you can do loads of things with it. The problem is it is not very portable for ds1 to carry. It is quite heavy and because he can only use one arm and hand, if it wasn't for his 1:1 at school, he would not be able to carry it around. Perhaps they will the size of your hands in the future, who knows.

Flip