Aspergers/ASD support thread

sarah1975uk

Savvy_Sue wrote: »

Magnetic locks: keep the magnet in your pocket or too high for them to reach, they are quite tricky to fit sometimes and can be fiddly to get the magnet in the right place, but no chance of 'forgetting' to lock them! Plus they are nigh-on impossible to open without the 'right' magnet, a 'toy' magnet will not be strong enough. (Can you tell we locked our magnets in the cupboard one day? :rotfl:)

Could do with these, to stop little fingers helping themselves to food and snacks etc

Savvy_Sue

blue_monkey wrote: »

Why is it that a lot of the places offering 'support' want you to pay for it? Dore wanted £70+ a month for their programme and there is another one I was directed to: http://www.dyscovery.co.uk/index.pl# and they want £75 fee for a medical questionnaire. I guess people will pay when trying to seek another opinion.

There are no simple answers to this.

On the one hand, desperate people will pay anyone any amount if they are sufficiently desperate. And, indeed, who can blame them. And there are people out there who will take advantage of your desperation.

On the other hand, a good therapy which helps even a few people is going to cost money. The research, the staff to put it into practice, the materials, the advertising, the follow-up, the people to answer the phone and tell you whether it's suitable for your child or not. Even if there's a charity promoting the therapy, they're likely to need staff of some kind.

And our children deserve the best, don't they? And the best costs money!

Obviously, once a therapy is 'proven' we would like to think that the NHS will fund it for all the people it's suitable for. But we know that's not happening for things like cancer. And we know that the LEA should pay for the right education for our child. But we also know that's not happening without a huge fight.

How we steer our way through this maze - what does my child need, how do I find out what's best (or even what will help at all!), who's going to pay for it - is different for each of us. How we get independent evaluation of things like DORE and Dyscovery I don't know - although no doubt the NAS would be a good place to look. But we do need to listen to those independent evaluations, because otherwise we'll be trying the next 'miracle programme' on a regular basis.

Savvy_Sue

BTW, blue_monkey, I would think whoever you saw today should be able to write direct to the council's housing dept to strengthen your case - see what the lady you see on Monday says, and then maybe phone and ask if they would do that.

PasturesNew

Programme on Autism on BBC2 Wales right now

Where Are They Now?

Probably normal BBC2 as well

seven-day-weekend

Savvy_Sue wrote: »

If I PROMISE not to laugh if I ever meet your DS, am I allowed to have a little private giggle at the thought of reading aloud to the hamsters?

If I could be more helpful than that, I would. DS1 made friends at secondary school who made him look positively normal! And he has never minded being 'different', which we were warned was a key thing: if he wanted to be like everyone else, and found he couldn't, he might become upset / distressed etc.

I hope Seven-Day-Weekend will be along in a mo as her son is older and she might be able to encourage you better.

Hi, I've only just read Justintime's post, it was so interestring and many of the things sounded like my son when he was younger, especially not wearing appropriate clothing.

He is 28 on January 30th and he still doesn't always wear appropriate clothing. He very rarely wears a fleece or any sort of outer coat (he says he doesn't feel the cold, apparently some Aspie's don't), never wears a raincoat like justintime's son - he too would rather get wet!

I rang the other day to remind him of an appointment as he is not too good at organistaion. However on this particular occasion he had remembered and was a little put out with me reminding him. He said, 'I am able to tie my own shoes mum'. I told him he couldn't for ages and then asked him if he could tie a tie yet. He said no, actually he never did master that one! (This was all very light-hearted, we were not having an argument!).

Anyway justintime's post made interesting reading and I think it is very good that this thread is here for mutual support with our Aspies - of whatever age they are!

justontime

Savvy_Sue wrote: »

Magnetic locks: keep the magnet in your pocket or too high for them to reach,quote]

I hope nobody else had to find out the hard way, but beware of the damage a child with a magnet can do. My son decided to do an experiment (he does tend to get random ideas) and drew pretty patterns on the TV screen with the magnet. There was no picture left afterwards, but he was very impressed with the pattern!! It was done so fast and just with a toy magnet.

seven-day-weekend

Also something else I would like to say to justontime (sorry about getting your name wrong before), is my son had hardly any friends for ages. He had one close friend from when he was a toddler until he was 18, a lad just as unusual as Ben and very quiet. Then this lad just upped and went to Australia without telling anyone as he wanted to escape from his home situation. We've not seen him since (but Ben still refers to him as his 'best friend' ten years later, I think that's rather nice).

He does have several friends now, all slightly different in one way or another, but nice lads, and he also has a girlfriend . So he has had more of a social life as he has got older and matured as a person.

He is very loyal to his friends and in fact they all help each other out with their respective difficulties! (one is very badly dyslexic, one has mental health problems, another is in a wheelchair as he has spina bifida - but he's the one who drives all the others around! - and his girlfriend has AS). It's nice to see them all supporting each other as well as being friends.

It's good to see him having a social life at last.

D&DD

Respite etc..
I felt much like you about respite.I wouldn't hand my DS3 over to anyone for anything!!! I resisted for 3 years feeling guilty about asking for help,how he would cope etc etc..
One day I got chatting to our Estate Manager who had a son with physical disabilities and she asked me if I had considered it.I told her my feelings about the subject and she spoke about her experiences of it.When I left her I rang SS and made an appointment they came home to do a carers assessment and asked ME what would be best for DS3...they offer many variations of care and the one we chose has been a total blessing
I say just consider it,now may not be the right time for you but do keep it in mind for if you do feel you need it.Dee XX

shazrobo

hiya, blue monkey, just been catching up with posts, my twins have ADHD, one also has oppositional defiant disorder, the other has conduct disorder, which is even worse :eek: . just to say your not alone, in having a "naughty" son, i have two, medications can work, when its the right one, and they can also make it worse, if its the wrong one, case of findin out what works and what dosen't. hope you get something sorted re housing as soon as possible, must be so hard for you, (((((big hugs)))))
shaz x

fallen_angel_69

blue monkey neither of my 2dd have birthmarks at all on them thanks for telling me about next dd2 went to book signing today i was really disapointed she only got to say hello and she was holding her panto prog and he just looked at it and said i'm only signing books today which i had bought a copy from waterstones took her picture with him and never got either of there faces in it .I e mailed birmingham hippodrome explaing all about her condition and if they could arrange it if she could be the one on stage at the end (seen panto before so knew they did it) they replied they would see what they could do when we sat down a lady came and asked how old she was .dd2 said 9 then later on they chose a little girl in front of us who was sat in the middle of row whereas we were right at end,so have got her all upset saying why ask me how old i am if they didn't pick me (i never told anyone about me sending a e-mail so she could't have known ) Only high point of day was her face when i said she was going to see it again

the lea rang today and said they had sent out statementing forms to school today i told them it will take him ages to fill them in because trying to get him to do anything was a pain and she said he had only had a set amount of time to do it ,have got a review with him on monday so he's gonna be shirty with me as i went through lea instead of him because of him dillydallying about

had better go now dd2 doesn't want to settle down and watch torchwood before bed because he wouldn't do my programme the joys of being a parent