aspergers

[seeking-sanity]

Hi

Went to feedback meeting today and officially told J has aspergers, Ive seen people on this forum say when you have official dx it opens doors to other services, but Im not sure what?

Js been referred to cams to help with his rages and anxiety.

We were told the meds will now report back to the education for them to set help up, whether this will help or not as our lea are refusing to even assess!

They are also going to send info on support groups to us etc.

Can't help feeling what now?

My husband and I are finding things so hard, I know there is no magic wand, but still feel very confused by it all.

Sorry for keep asking so many questions, but still not sure which way to turn.

Thanks

[TuX]

The services I can think of are-NAS youth clubs-or drop in centres for older teens and adults,social services/disability team,respite,residential,special schools,ASD units,extra help at school.....

 

If you have a look on the NAS' PARIS site:

http://www.info.autism.org.uk/Pages/Index.aspx

and under the area you live in,it will give details of services available.

[kazzdt]

Hi

 

Don't know if this will be of any help to you,but at Sams dx we were given a management plan, which was along the following lines

 

Areas of needs i.e. ADHD, AS, Secondary Transfer

 

Plan of Action, i.e. Continue with ADHD Clinic

Refer Specialist Advisory Teacher for Autism Service

Further input from TW (therapist) home visits

AS workshops at health center

Liaise with primary schoolto organise professionals

meeting with secondary school SENCO.

 

Sam was DX in March, and all of these plans are being put into action. The dx has made all of these provisions possible, and it has been a huge relief to finally get there after such a long battle, especially just in time for secondary transfer in September. In our area it seems very difficult to get into the system, but once you're there (and have found the right place), it appears to be working well.

 

Hope this gives you some guidelines as to what can be expected, but I know that all areas vary so much, it so hard to compare.

 

Take care

 

Kazz

[Elanor]

I'm amazed at Kazz's management plan - what a great idea. When my son was diagnosed (over 3 years ago) it was a case of 'oh yes, he's got Aspergers - now you're on your own'.

 

We couldn't access any of the NAS programmes because he was too old, the school was obstructive, and no-one told us about benefits! As for therapists - well, I guess there's more demanding cases than ours.

 

Now we've got this forum, and there's so much help and information here. I really hope that in the last few years things have changed - but if help doesn't come your way Seeking-Sanity, then go out there and demand it!

 

Elanor

[Hectorshouse]

Elanor it was the same for us, 'heres your dx now off you trot!' ... 4 years later and we are still fighting, respite has been promised but never materialised, statements are fought bitterly over and still in negotiation, the NAS programmes weren't around then for us, and as for benefits ... didn't have a clue.

 

But now things are better, but everything I have learnt has been after much blind alley navigation, and if it wasn't for places like krism I don't know what I would've done.

 

SS it is as Elanor says, ask ask and ask some more, followed by some serious pestering, and there is always krism to come back to too sound things out.

 

HHxx

[sam5886]

SS,

 

Don't take any notice if the LEA refuse to assess - they do that to everyone. Gather your evidence write loads of stroppy but factual letters, let them know you will NOT be browbeaten by their so-called budgetary and policy issues and request an assessment again and again and again until they agree. The LEA will try to put you off at every hurdle - you need to fight, fight and then fight some more. They try to make you feel isolated and stupid and forums like this and many others I have known prove that there are loads of people out there going through the same experiences as you who are prepared to give advice and support.

 

My son was dx with Aspergers last November. Nothing happened. Then he was seen by and Educational Psychologist in February and a Specialist Teacher was put in place last April as was a Speech and Language Therapist in May (he has since been diagnosed with a Severe Expressive Language Disorder and Dyspraxia). None of this happened without me jumping up and down and making loads of telephone calls and writing letters.

 

The LEA turned down my parental request for an assessment/statement but that just made me madder than a pitbull chewing a wasp. So I wrote letters to the Head of County Council, Head of SENaPS, our local Councillor and MP. They were all very very supportive but it still took me going to a meeting with the Head EP and telling her exactly why my son needed assessing and that she had better get her Panel to agree (I get a bit forceful at times but I was polite ).

 

Now the LEA have finally agreed to assess my son and have put in place a new EP.

 

The Specialist Teacher, SaLT, SENCO, Social Services and OT all agree that he needs a Statement listing and quantifying his difficulties and what help he needs.

 

All this info has to be back to the LEA by the 14th July (professional reports by the 7th July). TO DATE the new EP has never met my son and yet she is going to write a report on which the LEA Panel will base their decision on my son's future......

 

Sorry this has turned into a huge waffle BUT what I wanted to say is don't sit back and let it come to you - go out, ask questions from anyone and everyone - pick out the good advice and dump the bad (not all will be relevant to your case) and demand help for your son.

 

I'll get off my soap box now. <'>

Good luck.

 

Sam

xxx

[tizzmeclare]

Hi seeking - sanity,

 

Dito to what the guys have been saying. Our SENCO put off applying for our sons statement until he got his dx ( not that I agreed with her) but she said, through experience, that children with AS without a dx have a very slim chance of even being assessed, but those with a medical dx stand a far better chance.

 

Anyway our sons proposal was delivered a couple of days ago, and we are now well on the way to finally getting what he needs.

 

So now you've got more evidence, start beating on the schools SENCO and the LEA's door to get him assessed.

 

Good Luck, tizz

[Zemanski]

that bit of paper was all it took to get the LEA to back down on assessing Com - although we did have to produce his consultant at tribunal because they tried to say it was late evidence and so wouldn't accept it

 

the battles continue and they don't like to let you know what there is to ask for if they can help it - we were left on our own too - but if you can find out what's available then it is easier to actually get it if there is a dx to wave at them.

 

ask your responsible officer if there is an advisor/team for autism/AS you can talk to - they will know most of what is what in education.

 

also talk to the NAS and Ipsea - very good on advice about statements and assessment

 

do you have a person from Parent Partnership to help you with paper work and meetings? - worth getting, again ask the responsible officer for the number.

 

stay strong

 

Zemanski

[mossgrove]

You may wish to speak to the NAS about going on a Help! couse, which is aimed at parents of children who have had a recent diagnosis.

 

They cover education, benefits, coping techniques, involiving social services and all the rest.They take place in 6 sessions over a period of two or three weeks and are well worth going to, as you will feel less lost in all the terminology.

 

The are free to attend (I belive Vodafone are meeting the cost)

 

If you want to know any more, feel free to PM me.

 

Simon

Edited July 1, 2005 by mossgrove