Aspergers/ASD support thread

Js_Other_Half

At least now you know Sam - and you won't be left wondering in years to come if there was something you could have done earlier.

D&DD

Apologies for my absence been overrun for a few days trying to salvage what I think should resemble a house *Its under here somewhere*

DS3 went back to school on the 3rd :eek: I can tell you he wasn't impressed...and still isn't...I think most of his Xmas break was spent winding down and by the time he finally got there it was time to go back!

In a bit of a poohy mood at the moment (probably brought on by all the cleaning);) Have CAMHS on the 17th so hoping for a good session with his pysch,I'm not really sure where we go from here though...

DS3 is struggling in mainstream(always has but because he's not having meltdowns in school he's just left to get on with it...)
Finally he has all the support in place we asked for plus a few extras and its actually giving us an easier life at home now...because he's kicking off in school instead it used to be the other way round!!

I know its because he feels comfortable*at last* with his TA (who is brill!!!!) but its still obviously not enough for him sadly.

I am so,so pleased with their attempts to put things right at last but so sad that its never going to work.I don't know wether to request a move again now or wait and see if it will eventually pay off...any ideas??
(He's year 4 )Sight reads pretty well,can't write very much at all,was doing well in maths but now due to profound communication disorder is struggling with 'the language' within all subjects...

duchy

Big hug for Carrera
I too am currently dealing with DS's depression. He's older than your son but had a massive meltdown on the last day of term and school went back today. I was dreading it-especially as I knew he'd get results from his GCSE mocks for his weakest subjects (English and History) and not the good subjects like Maths where he's predicted for A's. I finally gave in and looked at medication last year-our GP refused to prescribe so we went privately and it has made a big difference overall-he copes much better. I don't think he'd still be in school without it-mix in hormones with AS and depression is awfully common and for the first time ever we started to see our son's anger show outwadrly instead of been directed at himself
It is really difficult for the schools as they have to protect ALL the children (as well as been a Mum I worked for a year as a classroom assistant so I have dealt with ASD from both sides of the fence). I'm not sure how you can be qualified to be a good support for an ASD child-I think you either "get" it or you don't. My son had a fabulous classroom assistant right through primary school who had no qualifications or experience but totally understood him and was his advocate. (First year or two of secondary school we got a rubbish one supposedly qualified so it all balances out)
Please let us know how the meeting goes-it is quite usual to have these meetin gs without the parent been present so even if you had spoken to the head they may have said no.

Savvy_Sue

For D&DD: my gut feeling is that if you don't think mainstream school is ever going to work, it's worth asking now about the alternatives and expressing your worries.

I have a friend who felt she was pushed and pushed to keep her child in mainstream, it was important for socialisation etc and with a full-time TA it was felt the child could manage etc etc etc. That was do-able while one particular TA was there every day, but my friend didn't feel that her child was really learning much, just being 'managed'. And when that TA went sick, it was just not working.

So my friend started pushing for special ed. Even then the LEA were suggesting split schooling - half the week mainstream, half the week elsewhere. But she held out and got her child into a special school.

Within a few weeks she asked the new school how things were, and where on the ASD spectrum they felt her child was. And the school said that this child was one of the most severely affected children they had. And yet, mainstream was supposed to have been in the child's best interests.

When's your next review due? Do you think it can wait until then? If not I think you can ask for an early review.

duchy

There is too much emphasis put on socialisation with AS I feel. Most AS kids find socialising plain hard work-the mysteries of socialising are bad enough for the average teenager ! My son simply couldn't cope in mainstream. The LEA refused him a place in an attached AS unit and he found the size of HS to simply be too much. I eventually got funding for a private school by claiming the HS placement was not meeting his needs because it was too big for him to cope.....with over 2000 kids it wasn't something they could put in an action plan to change so I got my way and he moved to a mainstream private school with no ASN support whatsoever but with ten kids in each class he didn't need it as they treat ALL the kids like individuals. It isn't ideal but it's a million times better than having a quivering wreck who was starting to hate school and everyone in it....and himself for not been able to cope ! I'm sick of LEAs who put money before the needs of our kids-integration is all very well but somne kids simply can't cope (or maybe it's the schools who can't/won't cope )

kylieM_2

I have just found this thread, and I can not get over how many people are in the same boat.

My bother Sam (12) has autisim, I am quite a bit older than him and have had to watch my poor mother devestated about his condition. The usual story he seemed to be growing up the usual way, then when he was around two or so we noticed things were not quite right.

He can't speak very well, mabye the odd sentance like " I want pizza hut please" or " I want video" which is his obsession.

He doesn't go to mainstream school as he is too difficult to handle, he is a big boy as he eats a whole loaf of bread in one sitting if we keep our eye off him for 1 minute. He runs off as well.

He managed to escape out of the window once and run naked down the road to the shop to get some sweets, we found him just as the police were putting him in their car (god knows what people thought)

I will point my mother in the direction of this site and of this thread as she would benifit from reading your posts.

My familly and I all agree that if we had the chance to make him 'normal' we probably wouldn't as Sam just wouldn't be Sam

D&DD

Thanks so much Savvy your wonderful advice managed to get us through the last crisis *remember the pants in the swimming pool episode??* It's much appreciated :A
His review is not til June..his teacher has just left(which is a good thing!) but the new one is even worse...she doesn't 'do' SEN kids :eek: He started back to school on Thursday and shes had him in tears twice already...

First time she told him something and didn't explain it in Mikeyspeak so he got really confused then upset,Second time he had PE and didn't have kit as they NEVER do it on the first week back so she made him sit and read the dictionary as punishment for forgetting it...

Your friends situation sounds very similar to mine..I know 2 people whos kids have been shipped out to ASD units because the kids are too noisy but have no communication probs etc..My son has multiple difficulties but he doesn't get any choice??

NoahsPennilessMummy

D&DD (((hugs))) what an awful way for a teacher to behave:eek: how do they get away with it??...it is time they all had an nderstanding of ASD included in their training.

it has been useful to come on here and see what people are going through further down the line as their kids get older.

It seems to be common that writing skills are not good.....Noah is very good at numbers and music and can verbally spell his name but cannot write it as his fine motor skills are poor....unfortunately he has noticed that others can write theirs and so now wont even try it.

I would lke to think that Noah would manage mainstream through his educational life but i think that once he gets past primary this will be difficult.

He has 15 hours support a week which is not enough and am fighting with LEA for more....they have said if he needs more he needs integrated resource.....i do not want that!
It seems to be all about inclusion policies these days....which is all well and good but they need the support to back it up:rolleyes:
I am sure we all would like our children included but not at the detriment of their safety, security and happiness.

It is a shame we all have to spend our lives fighting for our children against such a rubbish system but well done on us all for doing it:T

Snaggles

It's unbelievable what people are dealing with on a day to day basis. It makes me feel sad and frightened. (((Hugs))) to anyone who is having a hard time.

DS has gone back to school today and I feel sick to my stomach wondering if he will get through the day without hitting anyone or yelling the 'f' word at the top of his voice (a new talent that he's found :rolleyes:). I live in fear of the headmaster's office. I feel like scum when I get dragged in there to be told how 'bad' my son is, and at the moment I feel like all the fight has been knocked out of me. I never know what to say to the headmaster or his teacher - I don't want to sound like I'm making excuses for him, or condoning his behaviour, but at the same time, I hate hearing them speak about him so negatively. It's like a knife in my heart, especially when I see his sad, confused little face, and then watch as he turns his anger on himself.

I'm probably just feeling crap because I'm exhausted. I've had terrible insomnia for the last few days (averaging 2-3 hours sleep a night), and when I do sleep, I have nightmares so vivid and disturbing, I wish I had just stayed awake. I'm pretty sure it's all down to stress.

DS refused to get ready for school this morning - I had to virtually carry him into the bathroom, wash him and clean his teeth for him. He wasn't having a tantrum, he was just sitting down, making excuses and refusing point blank to do it (although was surprisingly compliant when I did it for him). But with a baby to get ready as well, getting to school on time is becoming more and more difficult.

*Sigh* sorry for the miserable post, just finding things a bit difficult at the moment.

D&DD

Morning NPM
How are things going for you and Noah? I think I made the right choice at infant level to keep him in mainstream,mainly due to the wonderful teacher he had..it's purely down to her that he's where he is now.Juniors however I've found is a whole different ball game :eek:

As DS3 has got older a lot of 'new' difficulties have kicked in..ones which although they have always been there (like the poor muscle control,sensory issues,speech probs)have never significantly impacted on his learning/coping until now...

The language in all subjects is becoming more complex and a lot of the work is writing,2 things which for DS are like water torture..
For example he was tested on his mental maths,the test should have been completed in 2 minutes,it too him 10 to attempt it due to processing the language involved.

CAMHS say he needs a special school for definate at high school level..the only reason they are vaguely happy for him to stay at his current primary is because his class are so used to him just being him he is really well accepted ..he's just DS3 to them so I'm made to feel like I'd be taking him away from his 'friends' if I request a change of school..*wicked Mother that I am* :rotfl: