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SN children

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

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Original poster

Just received Aspergers/ASD diagnosis for DS - please talk to me.

84 replies

Bugsy2 · 05/02/2007 11:34

Feel so mixed up about this. On the one hand I'm glad I'm not a crazy woman for thinking there was something wrong for my DS, but on the other hand I'm so upset for DS & even though I knew there was something wrong, I feel shocked by the unequivical diagnosis.
Also realise I have a steep learning curve ahead. Please other ASD/Aspergers mums talk to me.

OP posts:

MegaLegs · 05/02/2007 11:37

It must be a weird feeling Bugsy - when your gut feelings are confirmed. Can't offer advice on the ADS/Aspergers front (yet??) We're stiil actively trying to get a dx for our ds. I'm pretty certain lots of support is on it's way

Dinosaur · 05/02/2007 11:37

Oh Bugsy .

I know all too well how bittersweet it is to get a diagnosis.

But having a diagnosis is the key both to understanding and to getting support.

PersonalClown · 05/02/2007 11:44

I remenber feeling that way after my ds was dxd.
Half of me felt great that he had finally got a diagnosis and half of me felt so upset that the hope that he was just delayed(Ha!) was gone.

Dinosaur · 05/02/2007 11:46

When you're feeling up to it, tell us a bit more about what the paed said.

What (if anything) have they offered you in terms of ongoing support?

Original poster

Bugsy2 · 05/02/2007 11:46

Thanks Megalegs & good luck with your diagnosis.
Dino, any clues as to where I should look for support. I have been forcing myself not to do lots of internet research as I didn't want to frighten myself & now I feel unprepared. Where do I start?

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Original poster

Bugsy2 · 05/02/2007 11:48

Going back to see the paed in about 6 weeks. She will be strongly recommending (in her report) that DS get a statement for school & is going to send me fact sheets & a list of recommended reading books.

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Dinosaur · 05/02/2007 11:49

Tony Attwood is pretty good on Aspeprger's - website here .

And the National Autistic Society is very good.

They do a free course for parents of recently-diagnosed children which I went on a few years ago - it was very good.

Original poster

Bugsy2 · 05/02/2007 11:50

Sorry not thinking very clearly.
Paed said deffo Aspergers/ASD. She said that DS had managed to cope because he is very bright & has lots of home support.

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Dinosaur · 05/02/2007 11:56

As you probably know from other posters, getting a statement can be a real battle, but if the paediatrician has said he should have one, that should help a lot.

You can apply for a statement for him - you don't need school to do that. From memory, it helps with the appeal procedure if you do it yourself too.

IPSEA give advice and free representation at tribunal - they are marvellous.

My DS1 (also aged 7) doesn't have a statement. He is very high-functioning, and he is managing without one-to-one, but he still struggles a little bit with the social aspects.

Original poster

Bugsy2 · 05/02/2007 12:01

Dino, this is so helpful - thank you. I know nothing about this really, so it is interesting to hear anything at all you can tell me.
What exactly is a statement?

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Bumblelion · 05/02/2007 12:07

A statement is a legal document that sets out your child's "special educational needs" if there are any.

It is a legally binding document that the school has to adhere to.

My DD has had one for 2 years now (she was 5 in October) and it started with her in the nursery class. It gave her one-to-one help and, although she follows the national curriculum, this is at her own pace. She goes to mainstream school but is definitely behind other children her age but seems to be managing fine, albeit at her own pace. Every small step takes her longer to accomplish (walking, talking, potty training, reading, writing, etc.) but once she reaches one stage, she can then progress to the next (whatever that may be).

Dinosaur · 05/02/2007 12:10

IPSEA website

Troutpout · 05/02/2007 12:24

Aww Bugsy...i know it's coming and i know i will feel exactly the same as you when we finally get a dx for ds (9).
It must such be a victory tinged with sadness. i know my boy has asd...aspergers most likely...and i finally want someone to say it back now ...but at the same time

You are doing the right thing by your boy though Bugsy...and he will be getting the support he needs now.

Aloha · 05/02/2007 12:30

Hi, sorry you feel so shocked. I do know EXACTLY how you feel and what a horrible shock this is, but it need not be a disaster. When ds first got a dx he was having a very distracted, flappy sort of day and the paed took literally one look and went, 'he has Aspergers' which was just awful. I felt he really disliked ds. The second time we went we had such a lovely paed who pointed out all the wonderful things about ds. Ds was being much calmer and even the original paed (who was at both meetings) was very much more positive about him.
A dx means yOu can now get help and explain things better to yourself and others. Dinosaur's ds1 is such an amazing boy. Obv I have never seen him at school but I was blown away by how bright, interactive, clever & sensible he is. My ds has an Aspergers dx and yes, he does struggle socially (really not helped at all by his dyspraxia, which I sometimes think is actually a worse social disadvantage at five than his Aspergers, as it means other children can literally run away from him. (((hug)))

Original poster

Bugsy2 · 05/02/2007 12:32

Thank you Bumblelion for explaining that. Thanks for the IPSEA website Dino. I'm glad I have a bit of time to sit look through some of this.
I have an appointment with the head teacher tomorrow. Is there anything particularly I should say / not say?

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Aloha · 05/02/2007 12:33

I actually didn't find the Aspergers literature very useful, but I suspect ds is quite atypical in many ways.

FioFio · 05/02/2007 12:34

This reply has been deleted

Message withdrawn

Original poster

Bugsy2 · 05/02/2007 12:35

Thank you TP & Aloha too. DS does struggle socially & finds it very difficult to play with other children. If you ask him who is best friend is, he says it is his guinea pig, Ginger.
Last week some children in his class said they didn't want to play with him because he had mental problems. He find social interaction a minefield.

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Aloha · 05/02/2007 12:36

That's the worst thing.
How old is he? What made you seek the dx?

Original poster

Bugsy2 · 05/02/2007 12:37

Funny thing is it has been so easy to get a diagnosis. I went to the GP, she referred me to the child psych. I saw her once, DS saw her once, the school & I filled out a load of forms & today I got the diagnosis. I had expected years of battling.

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Original poster

Bugsy2 · 05/02/2007 12:40

I've been worried about DS for years Aloha. He saw someone when he was about 4 but at the time his symptoms were diagnosed as fallout from his parents splitting up. I didn't feel that this was so, but put lots of their suggestions into practice & we made some progress. However, over the last year it has become sooooooooooooooo apparent that however much progress we have made in the home environment that DS is really, really struggling at school and any other environment where I am not there to help him.

OP posts:

expatinscotland · 05/02/2007 12:41

(((HUGS))), Bugsy.

We knew something was wrong for so long, but it is tough when you finally get the d/x.

saintmaybe · 05/02/2007 12:42

Oh Bugsy.

I know it's such a mixture to get a diagnosis, relief on one hand but it's all become so 'real' as well.

He's the same lovely boy that you love

The best reason to get a diagnosis is so that you can access resources that will be useful for him and for you.

I think for a lot of us, we don't realise how many assumptions we've made about what our children will be like and what kind of lives they're going to lead until we're forced to reassess those assumptions. To some extent all parents probably have to do it - we just have to do it all at once.

Do you know of any other parents of sn children near you? When ds2 was diagnosed an early years outreach worker put me in touch with a local mum who was a bit further down the line and it was so helpful. As is mumsnet.

{{{hugs to you}}}}

Aloha · 05/02/2007 12:42

I'm really sorry Bugsy. I do know what a hideous shock it is. Ds is Ok at school atm, though I am taking it day by day. Am picking up his IEP this afternoon, actually after they 'forgot' to give me the last one
Have you talked to the senco?

FioFio · 05/02/2007 12:45

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