Aspergers/ASD support thread

mandy.h_2

the first place to go is to your gp start pushing now for answers as to what to do,as he gets older he will become much more difficult, my sons primary school years were a doddle compared to now and it takes years to go through assesments etc and then you might have to fight for the help. He will need help in secondary school and to get that you need a reason for his behaviour

i have also noticed there is a pattern to ds behaviour at school, the classes with 1:1 in he is much better, its not even about the subject or teacher. he is good in one maths lesson doing sats level 6-7 work with support next day no support work level drops to level 3. We are in process of askng for further help but it alla bout funding. You think they would want it if it makes teachers life easier we have managed to get 1:1 for real sats in two weeks time

Sarahsaver

Just thought some of you may like this, a poem by a girl with Aspergers:

Ironing Out the Wrinkles

Life was once a tangled mess.
Like missing pieces, in a game of chess.
Like only half a pattern for a dress.
Like saying no, but meaning yes.
Like wanting more, and getting less.
But I'm slowly straightening it out.

Life was once a tangled vine.
Like saying yours, and meaning mine.
Like feeling sick, but saying fine.
Like ordering milk, and getting wine.
Like seeing a tree, and saying vine.
But I'm slowly straightening it out.

Life is now a lot more clear.
The tangles are unraveling,
And hope is near.
Sure there are bumps ahead.
But no more do I look on with dread.
After fourteen years the tangles have straightened.

(Vanessa Regal)

Snaggles

Ryan (aged 7) announced last night that he has a girlfriend...

He says she really likes him but has asked him to just say a few sentences when he's telling her something, instead of a million!

And bless him, he's really trying!! He was chatting to me last night, and trying to mimic 'normal' conversation, for once letting me get a word in edgeways. I could see the effort written all over his face. I was really touched that he cares enough about this girl to want to try, and also quite amazed that a seven year old girl managed to do what me, his teachers, and even the SALT haven't yet managed - to tell Ryan simply and clearly how to improve his conversation skills, and get him to WANT to try!

Sarahsaver

Aah thats so sweet
My DS's teacher said about him in the report to the child psych, that DS would 'never be mean or nasty to anyone' He just doesnt understand why other people are mean and nasty sometimes.
Stomping off to the school next week after my letter saying he has a diagnosis elicited....ZERO response from them. In fact the very same day he got told off for something he did not do, then got told off when he told the truth about what happened I told they they are having a meeting with me and the parent partnership people have been great, they will send someone to accompany me at any meeting.

Snaggles

Thanks - meant to say as well that I loved the poem.

Sorry you are having a bit of difficulty with the school - I didn't realise parent partnership would send someone to accompany you to meetings, that's really good, and worth knowing. I hope you manage to get a bit more response from them following your meeting.

D&DD

Our parent partnership are very good and also come to meetings if asked.
I haven't been around for a while due to our boy having a breakdown due to school 'issues'...
Now,finally, after 6 years we have got the LEA to listen and his papers have now gone to 3 schools to ask for placement,all of them specialist ASD schools.:j
I prepared our case for the Annual review so it was as watertight as possible with regards to moving him.I got all the professionals who work with him to do reports stating his difficulties across the board and for once the school had the decency to agree with them and us...so we are awaiting news but at long last things are looking up!:T

Snaggles

That's great news D&DD....will keep everything crossed for you.

blue_monkey_2

Moring everyone,

I've not posted for ages I apologise, everything was going 'too well' and with everything else going with the housing situation on it seems one thing has to come above another.

I went to see the paed yesterday and it turned out to be a duplicate appointment from the CDU which I was a bit embarrassed about. I had been offered a cancellation a a different clinic, took it and then another appointment came through but never received any paperwork (I am hopeless with names and did not note his down) but it was OK and he did a few extra checks.

However, I found out that CAMHS have bounced Ryan again. Before it was because he was too young and they did not see children under 4 (2 months before his 4th birthday), this time it is because he is too young and they do not deal with children under 10!!! Unless he was either excluded from school, been done by the police or if we had been referred to a parenting group. Or if he had been diagnosed with ADHD - but the doc diagnosed something else so he could be helped with behaviour therapy by CAMHS and then ADHDwhen he is 7!! Are you confused yet??

I have to speak to the co-ordinator of a parenting group as if we go to that then we can get seen at CAMHS. CAMHS were supposed to be arranging the parenting group.

Of course, nothing ever comes to me and they never tell me. I only found out when the doc checked his notes - they have only written to the doc at the hospital but we are not seeing her again until he is 7!! Nothing to my doctors or anything.

So now I have to go and see the doctor to find out who 'diagnoses' his 'Autistic Spectrum Disorder' that the hospital doc said he had. The doctor at the ADHD Clinic told me CAMHS woud do this but they only seem to have replied about his hbahviour problems.

I hate the fact I do not get any correspondance, the only one I have had is from the doctor that I have seen twice (once by mistake) that arrived yesterday AFTER I had been to the appointment and the stuff he photocopied for me and let me take home.

The whole thing is frustrating!! I feel like it is 5 steps backwards!! And if I did not go to the appointment yesterday I would probably have never had known.

blue_monkey_2

Just read your news D&D that is great news for your DS. x

shazrobo

blue monkey, why did the doctor say he can't diagnose your son ADHD til he was 7?
i asked because one of my twins was diagnosed at 3 and the other at 4,