Aspergers/ASD support thread

shazrobo

my two boys are very picky over their clothes too, at primary school, i managed to find elastic waisted trousers and school let them get away with polo shirts, but they would never ever wear proper shoes, so had to send them in black trainers, despite the school saying smart shoes only.
now they are both at special schools, there is no dress code, my kids pick black fleecy jogging bottoms black fleecy crew neck jumper and white polo shirt, look like they picked their own uniform lol.
for weekend wear, again its trackie bottoms, t shirt has to have slogan or design on front, never plain, and jumpers have to be of the hoody type.
they are still only wearing trainers, which at a size 13 is becoming harder to find

blue_monkey_2

shazrobo wrote: »

t shirt has to have slogan or design on front

yes, that is weird, Ryan is the same, I have tons of t-shirts but he only ever picks out the ones with pictures of cars on the front, the others always get pushed aside. I just managed to get 2 identical tops in the next sale with cars on the front and back - he loved them, if I find something he is going to love wearing I'll buy several as he is kind of funny that is he gets the slitest mark or drop of water on them he will want to change.

Another thing to ask - do your children bite their sleeves? I've had several tops that I have had to throw away and the school told they had caught him biting his sleeves.

Also, another question (so sorry) do any of your kids bite THEMSELVES when they are frustrated? Both my kids do this and will bite their hands/wrist to leave deep bite marks and they various bite marks on their hands permanantly. Is this common? They don;t seem to notice it causing them pain when they d it. Do ASD kids feel pain when they are angry or frustrated? Ryans teacher told me she saw him doing it and I said 'yes, they both do it quite a lot but I figured if they are biting themselves they are not biting anyone one else so I've never thought anything of it'. It sounds daft but it is so hard to know what 'normal' kids do, I do know that none of my friends children do anything like this. They still have 'security blankets' as well but I have managed to get them down to having them just at bedtime. DD is 5, Ryan will be 4 in February.

Savvy_Sue

We never had animals: we once 'borrowed' our best friends' rabbit, guinea pig and hamster while they went away, but as it was not only me who had to do all the feeding and cleaning out but also all the petting because everyone was scared of them, that was the end of getting pets! In fact DS1 was fairly timid with animals: various friends had cats but he never wanted to be near them and usually the feeling was mutual. and as for dogs :eek: but then my parents had dogs who barked at him, so I don't blame him at all!

blue_monkey wrote: »

Sue, i did laugh at your son in this t-shirt for the smart do, bless his heart. Do the people he is at uni with know of his ASD? what is he studying, does he live away from home from you now? How did he cope with the change?

He's away at Uni, yes (well home for Christmas). Funnily enough, he's always coped better with change than I expected, and he was glad to get away, although I was very flattered to see that his choices for Uni were mostly within a 2 hour drive. I'm assured this was accidental. I supposed his 'good' reaction to major change is because it's always been either "This is going to happen, so I've got to deal with it" or his own choice. Plus it is very mild ASD.

Studying computing, doing very well on the whole. But he came home and announced that he needs some post-16 medical evidence of his 'disability'. Because he's struggling with getting his project organised, his tutor referred him to learning support services, and they want to give him a mentor, but to pay for that he needs a Disabled Student Grant, and the local authority want more than a letter written 8 years ago saying he 'may' have ASD. For which one can't really blame them.

I am sure the evidence exists, because there was a panic in the January before his GCSEs: he looked as if he could fail English, and his teacher asked if there was a problem with exams, and he said "I do have Asperger's". I'm sure it was on his record, but because he'd always functioned OK, most of the teachers didn't seem to know. Anyway, we went to see our GP, he referred him to child something or other, we were summonsed to the school doctor, and suddenly he had extra time for exams.

And he then had extra time for his A levels as well. But I don't think we were ever sent a copy of any letters confirming this, or saying what the doctor thought. I did phone the Uni learning support people before he went up there and we agreed that as he didn't need special equipment there wasn't a lot of point applying for DSG immediately, we'd wait and see how he got on.

Only now, suddenly, he needs help and we've got to jump through hoops to get it. Of course it doesn't help that he didn't tell me until he was home, and then he didn't get round to making any phone calls for a week or so, and now everywhere we need to speak to is unavailable until after New Year.

He phoned his old school, but they said his records had been 'archived' and it might take a while to get them. I phoned the GP surgery here: they said there was something on the computer about him still, but he'd have to phone them to discuss it - by the time he phoned them back there WASN'T anything on the computer. He phoned the GP surgery at Uni, and they wouldn't talk to him at all over the phone, so he's leaving that until he goes back (and boy will I be :mad: if he doesn't do it quick!) - I'm just hoping his medical records haven't disappeared into a black hole, because although he registered in his first year he was living on campus then, and of course he's moved a couple of times since then, and the Uni website says they must keep their addresses up to date and if they don't they'll be struck off the lists.

the other thought I've had is that if the school doesn't want to un-archive his records promptly he'll have to ask for them under the Data Protection Act because then there are time limits!

I'll pay privately for an up-to-date assessment if we have to, although I do worry that a current assessment might say "He's fine, just disorganised" - but he IS different, he DOES react differently to things - and he still doesn't 'do' love! :rotfl: Or many other emotions, come to that. The good news is that he does now realise that he's onto a good thing at home: I don't charge rent while he's still a student, I will give him the odd lift, and if he needs anything I'll usually buy it for him. Like those trousers ... he wants me to mend them but I'm not convinced it's worth it!

mummytofour

Ooohhh just found this! Shall keep me busy for hrs lol
Just wanted to come and play, I am mum to five one with ADHD adn ASD plus a couple with un-dx ADHD.
Off to read now.

shazrobo

blue money, both sons bite themselves, bite sleeves on clotheing, chew collars on polo shirts, chew zips drawstrings, anything they can get in there mouth. my sons have never had a security blanket, but are very very fond of cuddly toys as their comforter, they take one in the car, and they are 12, definatly not like other children their age.
my sons try all sorts of self harm when they are frustrated from biting themselves so hard they draw blood, they bang their heads against hard surfaces, and daniel also punches himself, it so sad seeing them so upset and frustrated.

ms_piggy

My DS2 self harmed when he was frustrated all the above and attempts at suicide. He's better now I have learned to intervene before things get too bad. I have taught him coping strategies to calm him down until we can talk about it.We still get the occasional meltdown though.
Apparently they do this as it gives them some sense of control

Savvy_Sue

Well, I thought biting sleeves was 'normal', because I think all of mine did it at Junior School, we had cuffs hanging off! And DS3 bites himself sometimes but he's only started now he's a teenager, he doesn't draw blood.

blue monkey, I would not fuss about a security blanket kind of thing at this age, or even quite a bit older, if it helps stop the chewing and biting.

karmacookie

Hi Blue monkey

I live in a lovely 3 bedroom housing asociation house. Long story but basically we did not have a secure tenancy so I spoke to my son's consultant at the CAMHS who filled in a health form for the Housing Association. we were awarded maximum points for health grounds and got this house within 3 months.

At the time we had a dog and 3 cats and although you are not supposed to have as many pets as this we were given permission to keep them all.

good luck, there is no way I would have wanted my son to share with my daughter her life was hard enough!

fallen_angel_69

there is a 6yr age gap between both my girls who both have asd and we got a letter from camhs and gp saying they couldn't share a room and we got moved into a 3 bad house within 6mths

dd2 bites holes in her clothes all the time and only wears jogging pants she still has her blanket of her cot that she takes to bed with her sometimes and she is 9

took her to the panto yesterday and she was brilliant sat through it not wanting to go lou every 5 mins like a cinema and she cheered and booed in all the right places was really pleased with them both for being good usually if i can get one to be good then the other a pain but they were so good when i said would you like to go next year they both said yes so have already booked tickets manage to get front row tickets but not the day i wanted but hopefully they will behave just like this year i hope well i can dream

blue_monkey_2

Evening everyone,

Karma and FA, that is really interesting thank you - I've not known anyeon be housed by the council at all to be honest so your post has given me some confidence. I am going to give the council a call tomorrow and find out how many points I have now (I've still not had the letter but with Xmas and all I was not rushing) and how many rooms they are going to give us. if it is only 2 then I will go and see the doc and ask for a letter and explain how life is (I have already told him, if he seems problem enough to refer me once to CAMHS and then when CAMHS refused us due to age, to the CP then I am sure he will vouch for us and do the letter. The problem for us is that we have had no 'diagnosis' as we are waiting for the appointment. I guess I've lived with things so long you get used to them and if the school had not done something about it then I would not have realised he had anything tbh.

It was interesting about the clothes biting, we have old cot sheets that the kids chew - my daughter just holds them but Ryan does shew the corners, but we have 2 sizes crib and cot and he refuses to have the cot ones it has to be crib size and if I try and fob him off in the dark with cot size he is having NONE of it, LOL. He took it to school one day (it was the only way I could get him out of the door) and they said he could not keep it with him. has anyone else had that said to them?

In regard to the self harming, I have wondered what would happen if this carrys on into teenage years. MP I am so sorry to hear about your son, I cannot even imagine how hard it must be just day to day, I did then start thinking about whether the biting as a form of release might turn into more when he gets older. The future is sometimes csary when you think about it too much

You know, most of this for me is that I have had a retty crap life (before I got married) and I have always been self sufficient. Because my mum was so badly treated by my dad and because she was an alcoholic I have always been able to get by without anyone. Even now if I have a problem i won;t ask anyone for help that I know as I feel I am being a bother, so I'll keep things to myself and just get on with what needs doing. All the things I need to do for Ryan and to get a place to live really feel too much at times and I don't like to feel like I am bieng pushy and 'needy' and telling people 'I need your help', I don't like to think I am being a nuisance as in the past when I have asked people for help they've always turned around and said they can;t help me, so I guess I have managed to get by with being 'self sufficient'. I know what I have to do but it makes me feel really embarrassed that I need this doing and this looked at, I guess I have more of it to come but I don;t like to bother people and this is what I feel like I am doing right now. but, have learned from you buys that I HAVE to be pushy, I kind of think that I should be as I need to get the best for my family (not just for me) and this is what I should be focusing on right now, that it is not me I am doing the bothering for.

Thanks once again. I know it sounds daft but it is so nice to have people to turn to, I don't know about you guys but I don;t think anyone takes me seriously about Ryan and I feel bad for coming here to have a moan and a whinge but it is my only outlet right now.

Do any of you have groups that you go to with your children, aor are there support groups out there at all that can offer more help and advice. Do you have to be diagnosed to speak to anyone??

DD got Polly Pocket for Xmas, she got a car set and also the little dolls. Yesterday I found Ryan playing with the set - cute you might think, until i tell you he had the doll on the floor and was rolling the car over her going DIE DIE DIE DIE DIE!! :rolleyes: