Aspergers/ASD support thread

Savvy_Sue

mum, welcome to this thread.

Firstly, with your hearing difficulties, make sure the schools are aware of these, and use the communication means you find most helpful. For example, if it's easier to email rather than phone, request that they respond that way. You also get confirmation of what's been said that way.

If you have a meeting, ask that someone should be there to take notes at the time, that you be provided with the notes, and then check that they agree with what you think was said. If they're awkward about a note-taker, is there another mum you'd be happy to have present?

Then there's IPSEA and Parent Partnership - google that plus your area.

As for the whinging, been there, done that, got the t-shirt. You may be told to ignore it, however what worked for me was to say very firmly "ENOUGH! STOP! I know you are not happy about this, you do not need to tell me again." Ignoring it did not help at all! When DS1 had whinged for a week about leaving home, I did also go through all the places I thought he might think about going, and told him why he wouldn't like it any better there, and that anyway, no-one else's mum would have him. Felt very cruel, but it did shut him up!

Own_My_Own

jackieb wrote: »

Well done to him!

That cartoon is funny. :rotfl:

My 19yo son has just been diagnosed with Asperger's. My 16yo daughter was diagnosed last year. I wonder what i've done wrong that's taken so long to get them a diagnosis? Should I have been more pushy? My daughter's psychologist said it's because we've both coped so well with it. I don't know if coping is the right word.

My son was not diagnosed until he was 16 and left school. He tried to kill himself, by head butting the wall so hard he cracked the plaster. It was all pretty quick after that. ( the actual diagnosis was done in under an hour 8 weeks later.)
Mind you a diagnosis was all the help we got. As he wasn't statemented at school nobody wants to know. But he got awarded ESA today so we are happy:j

After his diagnosis I went back to his old school MAPs team to tell them. I thought it might help another child get help earlier. Their reply was 'That explains a lot !'

Says it all really !!!!!!!!!!

asparagus1968

seven-day-weekend wrote: »

Just to say my son is now buying his own flat! We gifted him the deposit to make the mortgage repayment affordable.

He and his girlfriend have lived in it since Febraury.

He says he has to be a grown -up now and has behaved very responsibly with it, asking my advice on financial matters if he does not understand them. Things are looking up!

He sent me a wonderful cartoon through on e-mail, which could be entitled 'B--'s trip to the solicitor's office'. Made me :rotfl::rotfl:

this made me laugh then cry.just the sort of thing my 11 year old boy (pdd) comes out with......

daska

mum26 - what kind of help are you wanting/ expecting for DS3? I would second SavvySue's recommendations of ParentPartnership and IPSEA.

Also, are you aware that it's possible to make a parental application for a statement - that might focus them a little.

Some school just don't want to be good for kids with special needs - we moved DS2 at Easter and the difference is astounding!

mum26

Hi Daska, what I really want is for people to understand why he behaves as he does, after that I have no idea what they can even offer! A little bit of help so he is clear with what is likely to happen when goes a long way with him, things like that?

I have no idea about statements etc etc, the senco at the school who told us to go via GP was the head teacher and tbh she didn't seem to have a clue. I was told by the senco at ds1's other school that the ed psych team had gone and had a meeting with my gp, not about ds1, but to tell them off for refering him that way! Seems they have time to do that...

Thanks for the advice, I shall get in touch with parent partnership so I know what I should be doing and when. x

Savvy_Sue

TBH, once you've worked out a few things which 'work', it's well worth going in with a written list. For example, the knowing what's going to happen when can make a huge difference, so knowing what days they will do PE, so that your son is forewarned, will help, and making sure that the class teacher knows that suddenly changing expectations will 'throw' him.

jackieb

Own_My_Own wrote: »

My son was not diagnosed until he was 16 and left school. He tried to kill himself, by head butting the wall so hard he cracked the plaster. It was all pretty quick after that. ( the actual diagnosis was done in under an hour 8 weeks later.)
Mind you a diagnosis was all the help we got. As he wasn't statemented at school nobody wants to know. But he got awarded ESA today so we are happy:j

After his diagnosis I went back to his old school MAPs team to tell them. I thought it might help another child get help earlier. Their reply was 'That explains a lot !'

Says it all really !!!!!!!!!!

You and your son have my sympathies. I hope he gets some help now.

My son only started to get help after taking an overdose. He attended the young person's dept of the local psychiatric hospital until he turned 18 and was too old for it. It then took ages for the adult services to be put in place. He only got tested for Asperger's because his sister had been diagnosed last October. Her assesment took months, she was videotaped and had 1-1 sessions with a lovely psychologist. My son was referred to a place through the NAS and his diagnosis took only a couple of sessions to be diagnosed.He doesn't get ESA as he goes to college but he does get DLA now. My 23yo has dyspraxia and ADD, also not diagnosed until he was 15, and he has just been referred by our GP to see a psychiatrist too.

All of them saw the same school doctor throughout their junior and secondary schools, at least twice a year because they were different basically, but no help was offered to any of them. I even suggested to the same doctor that my daughter might have selective mutism, and she said, 'oh no, it's definitely not that'. So I asked her if she could refer us to see someone, which she did, and my daughter was actually diagnosed with selective mutism a year before she even got tested for Asperger's. It's a joke how some people just seem to slip under the radar.

PasturesNew

davidgolf44 wrote: »

This is amazing,it's exactly the way I feel.I was recently diagnosed as having Aspergers, and I hope you get a formal diagnosis soon.

I've still not even started to ... stuff happened, stuff got in the way .... and, I note from my original posting that I wanted to tell my parents it "wasn't me", well that won't happen as one died and the other's ga-ga.

daska

mum26 wrote: »

Hi Daska, what I really want is for people to understand why he behaves as he does, after that I have no idea what they can even offer! A little bit of help so he is clear with what is likely to happen when goes a long way with him, things like that?

I have no idea about statements etc etc, the senco at the school who told us to go via GP was the head teacher and tbh she didn't seem to have a clue. I was told by the senco at ds1's other school that the ed psych team had gone and had a meeting with my gp, not about ds1, but to tell them off for refering him that way! Seems they have time to do that...

Thanks for the advice, I shall get in touch with parent partnership so I know what I should be doing and when. x

PP advised us to do a parental application simply because it would be turned down but would trigger an ed psych assessment as a result. (It's dead simple to make the initial application.) It went in last July and DS2 got his statement at Easter. DS2 is a lovely lad but has severe language delay, DCD and a history of violence, probably ASD/ADHD. He's starting in the specialist ASD/S&L unit this term, we're very excited!

Your GP probably needs to refer to a paediatrician, who will then refer forwards for assessments for ASD etc, rather than direct to the EP - would be typical though for them to tell him what not to do rather than how to do it properly LOL.

You say he's loud, doesn't sleep etc? Have a google about sensory integration, it might ring some bells. If it does then ask the GP to refer to Paediatric Occupational Therapy. They might have some techniques to help calm him. DS2's key area is his head, he's only been sleeping through since he was 4.8, prior to that he'd sleep 4 hours max, frequently up until 3am. I discovered our miracle treatment on a very cold night: a tight hat or usually 2 buffs, one worn as a beanie to keep the second, folded like a headband, in place. That and some joint compression and he's a totally different lad.

seven-day-weekend

Just visiting this thread to report some more good news for my son - he has been 'head-hunted' internally again (Morrisons) and has been offered an opportunity to train in Butchery. Don't know when it will happen, but good that he is considered suitable.

I think when it does come to pass, he will do the same as when he moved from checkouts to Oven Fresh - ask if he can have a trial period so that if it doesn't work out he can go back to where he was (to Oven Fresh or Checkouts). They were quite happy with this last time.

He's now trained on Checkouts and Oven Fresh, as a Supervisor on Automatic Checkouts and now this opportunity comes about. All good training for a supermarket worker, he'll be able to take these skills to any supermarket.