Aspergers/ASD support thread

shazrobo

my sons pychiatrist, and ex social worker blamed me as a single parent for my sons behaviour, they even went as far as to say they cant possibly both have adhd, its down to my parenting, and i was sent on loads parenting courses, which obviously didnt change my sons.
a friend recommended a pychiatrist in another town, different hospital, and i managed to get a referal through gp, and they were so understanding, and helpful. and because they identical twins who share the same dna, then course they would both have it. seeing him has made me feel better about myself, as i now know it is a medical condition, and not my fault.

incidentally, one son has just been sent home from school today for having a severe temper tantrum, and the teacher said he needs to learn to grow up, :eek: some people are in the wrong job, especially as this is a special school

blue_monkey_2

Hi guys, thanks it is so nice to speak to people that understand about this. I do find it diffult when Ryan looks so normal on the outside. We were at family the other day and he just will run and jump on people - no warning - he just does it. FIL was 'get down, get down' and I said he wont you'll have to just push him away, he turned and said 'he will if I smack him'. My husband sat there and said nothing, I said you will not and then said you cannot punish him for stuff he does not understand! It then transpires that DH used to be exactly the same as Ryan with tantrums in shops etc... So it makes you wonder.

My husband annoyed me the other day, I simply do not know how I can stop Ryan jumping on people when they are sitting down, you can be sitting there and he is all over you, it is just get him down he gets up - and repeat for the whole day. I am not sure how we stop this unless we just do not sit down. I know brothers and sisters will always argue but Ryan cannot be left unsupervised with his sister else he just launches himself on her. How do I ever stop this? Stickers? Give me strength!!

I've started a list, I need the list of things to say to her and I am going to ask her what she thinks I am looking for? I've been making a list of things I want to address and I am going to ask her if she thinks his behaviour is my fault. I am also going to tell her I do not need any more meetings as I do not need the help. I do think I am coping OK and until I find out what is wrong with Ryan by diagnosis how can I do anything further. I will just say I get so little time I do not want to be in the house getting the house tidy and the like, I'd rather be out and about.

I saw a new Child Developement Doctor last week. What a waste of time. He introduced himself and Ryan hid and would not speak to him. We went to the room (why have they never got any decent things for them to do in there) and ryan refused to draw a picture of me for 20 minutes, then he did. He was climbing on tables, not getting down when asked so I'd have to go get him. Playing with the taps and sink when I asked him not to. Wanted the toys in the cupboard that he could not have. After 35 minutes of this Ryan was happy to be weighed and measured and looked at. The doc moaning about his excema - as I had been given the wrong creams (my fault) he said his skin was dry so I have to use E45 on it all over every day. This was all I got out of it.

On the way out of the room he turned to me and said 'he is very co-operative isn't he. Are you sure that you want the appointment at the communications clinic, it is a 3 hours appointment' I said '3 hours' and he said 'yes, it is a long appointment, I can cancel it if you wish'. I said 'no thanks, the other doctors said he needs to go so I'll stay on the waiting list'. I cannot beleive that he tried to get me to take my name off the list. 3 other docs have asked for him to go there yet he decides that he does not need it because the appointment is a long one. What is that all about??

You know, I cope with him and the school copes with him, all I want is his ASD diagnosed so we know where we are, what he is suffering with and how we move forward. Is that too much to ask.

blue_monkey_2

TOld to grow up? In a special school? OMG, that just about sums things up I guess. You really do have to wonder.

seven-day-weekend

Yes, we were blamed too for our son's condition -'well he SHOULD be able to fasten his tie and shoes at 7' (he still has trouble with a tie at nearly 29), 'he's very irritating isn't he?' (Yes, but what am I supposed to do about that) 'he's very young for his age' (Yes, but don't care, we'd rather he was that way than into sex and designer fashions at 10), 'all he needs is a bit of discipline' (Really. I'd never thought of that), 'Hasn't got many friends' (Do you think I wouldn't give my right arm for him to have more?)...so it goes.

The amount of Parents' evenings I would come away from in tears! I always had to go on my own as my husband was always 'the teacher' seeing other parents. He used to tell me not to go to them as they upset me so much, but I felt I was letting Ben down and always went (if I had my time over again I wouldn't!).

A nice little story though.....Ben always used to cry (at home, not at school) when he had to do creative writing. He just hadn't got a clue what he had to do. One day I just said to him about something he was supposed to do, 'well you tell me about it then, don't bother writing it' and he told me a really imaginative story about space-age soldiers, and as he did so I wrote it down as best I could. When he'd finished I gave him the paper and said 'there is your creative writing homework'. You could see the lightbulb come on and he said 'you mean it just has to come out of my head?'

The next parents' evening I went to (the GCSE year) , I'd heard all the usual about how he didn't concentrate, was always reading a book or looking out of the window, lazy etc etc and was close to tears. Then I got to the English teacher who said' Ah! Ben!' I prepared myself for the worst. He then went on to say 'Ben's coursework folder is a delight to behold. I wish I had a classroom full of students like him. He's a delightful young man, original and quirky, and writes terrific stories. In fact they are so good I've entered one in a creative writing competition'.

Well at that I DID burst into tears, I felt a real idiot!

Suffice it to say, AS was not recognised in those days. I'm glad that nowadays on the whole children on the spectrum are getting their needs met (albeit with a lot of struggle).

Wishing you all well..

blue_monkey_2

Thank you SDW, that is a lovely story, it is lovely when one person sees your childs potential. Because of all the leaping I am sure that Ryan will be well suited for Gymnastics and I have him on the waiting list. A few weeks ago I was walking to school and a lady stopped me asking if I was Ryan's mum. Uh-oh. Yes. She said that her daughter had gone home and had been telling her about this boy called Ryan at school who was only 4 but her and her friend were holding one of his hands each, he was in the middle, and he was able to somersault while holding onto their hands. And that made me smile for the rest of the day. It does take just one person.

It probably sounds weird to say that I am glad it is not just me but thank you all for setting my mind at rest, it just seems how these so called social type workers are always looking for someone to blame for a condition and cannot accept that these things just happen for whatever reason. The world would be a sad place if we was all perfect.

Strapped

Hi everyone, it looks as though my 6 year old is heading for a "formal" diagnosis through the NHS. (I say "formal" because we already have the County autism team inolved with him at school, which has helped a huge amount). After waiting since the summer, we saw a paedatrician last week. This seemed very much a "gatekeeper" appointment; he took a history (we went armed with our observations, plus reports from professionals who have seen him at the school) - while DS ignored him and played with a very impressive Brio train set - and agreed to refer him on "for full assessment" because he has classic signs of Asperbergers. They will also test for ADHD, although he thinks it's unlikely that DS has this. DAK, who he will see / what they'll do? We were warned that it will be at least 3 months before an appointment.

blue_monkey_2

Hi strapped, good to see you are getting there - I think just having the diagnosis makes all the difference, great news.

Strapped

Thanks, I think a diagnosis will help a lot re. accessing what he needs (and perhaps make people see it's not just his parents' fault!) The paed did say that a lot of people don't want a formal diagnosis but he also said that, although it's not supposed to, it will help with the statementing process (although timescales mean we won't get one before the statementing process has finished). He's managing to be in school at the moment because he has 1:1 attention from a TA, but that is only because the school has students in at the moment, who are covering what the TA is supposed to be doing - when they go back to uni I'm not sure what will happen so I hope the statement will recognise that he needs extra support and provide funding for it. The County autism team is providing advice and training to the school staff which has helped a lot too as DS has violent outbursts and they just didn't know how to cope with them before. (He has been excluded twice and then was on part-time hours for the last half of term). I've given up my job as it was all getting just too difficult so fingers crossed with everyone concentrating on him we can get him settled and happy in a routine.

guruo

My son was just like this as a child and in fact is still like it now!

seven-day-weekend

guruo wrote: »

My son was just like this as a child and in fact is still like it now!

Hi, guruo, welcome!

How old is your son now?