Aspergers/ASD support thread

Carrera74

Hi everyone

Hope you're all okay today.

I spoke to the Head yesterday and DS has got a 5 day fixed exclusion and by Thursday next week she'll decide whether a permanent exclusion is appropriate. She's asked for witness statements from everyone involved including DS and then she'll go from there.

DS was diagnosed as being ASD yesterday. I'm so relieved! I'm not sure whether this is how I am supposed to feel. I've always known something wasn't quite right but put it down to what he saw and heard during his early years (my ex was a bully) and my parenting skills. I have felt like a rubbish Mum on so many occasions and been told that too and had the looks off people who have thought 'get your child under control' Now we have the diagnosis we can put more strategies into place and hopefully (fingers crossed) that we get the support he deserves. He goes to High School in September so that's something to have a long think about. Also what to tell him if anything at all. He knows his visits to CAMHS have been about looking into what makes him get anxious and upset at school. He asked me yesterday if they would be able to tell him why he keeps getting excluded I just want to wrap him up in cotton wool.

peachespeaches

My daughter is 21 and we have just realised that its likely she has Asperger's. Our GP agreed straight away and referred her through the adult route, but I was fortunate enough to come upon a contact at the University who will assess her more quickly.

She had been seen by CAFTs or was it CAMHs when she was 14 but as she refused to speak to them they said they couldn't help.

I feel guilty because we didnt know before and I feel I should have done more about it. Unfortunately, she had rather a bad start to adult life with 2 teen pregnancies and I am bringing up both the grandchildren concerned. I now have to watch them even more carefully, as it may be that the eldest is also on the spectrum.

I was a relief to think that she probably has Asperger's though. Other family members have just dismissed her as rude, stupid, ignorant, callous etc. I was the only one who hadnt given up on her.

If anyone is in a similar position and wants to PM me please do.

Savvy_Sue

Sarahsaver wrote: »

I just heard someone on radio 4, she has written a book called 'Not stupid' which is about aspergers. The programme, loose ends I think, may be on the r4 website to listen again. bit pressed for time now but i will have a look later

It was Saturday Live, I think Sarah, very interesting. She and her husband started a school in Hillingdon because mainstream just wasn't 'working' for her sons.

Snaggles

peachespeaches wrote: »

Other family members have just dismissed her as rude, stupid, ignorant, callous etc. I was the only one who hadnt given up on her.

I find this one of the very hardest things to deal with. Even my own Mum and Dad seem to think that if I was stricter with him, I wouldn't have half the problems with him that I do. They think he does these things on purpose, and I have already had comments that he is using Aspergers as an excuse to behave how he likes. They call him names like 'heedless' and make comments about talking to the wall, which make me soooooo mad!

I think I've partly brought this on myself in a way, because for years I have hidden the problems, and not told anyone what one of Ryan's meltdowns is like. I'm only just starting now to feel as though I can speak up about what has been going on.

I also think my family don't want to face what's going on either - it's more comfortable for them to believe that all Ryan needs is some decent parenting, than it is to believe he has a brain disorder/condition.

I think we are making *some* progress with them though.

Carrera74

I used to get that too with my Mum and Dad saying I was too soft with him and he just needed more discipline although they know how to deal with him know it's so much easier.

My sister's OH once said he just needed a good hiding!!!! He's even said that he doesn't want his kids growing up like my son. That really hurt

Snaggles

Carrera74 wrote: »

My sister's OH once said he just needed a good hiding!!!! He's even said that he doesn't want his kids growing up like my son. That really hurt

How horrible (((hugs))).

There's not much you can do really - you can't change some people, but you can change how you react to them. If you really believe you are a good Mum, and have done nothing but your very best, and if you keep telling yourself that whenever the going gets tough, it does counteract the impact that silly thoughtless comments will have on you.

It's not easy to develop a thick skin....I'm still woefully over-sensitive to criticism about Ryan, but it's because we are probably already working harder that most other parents are, so to be told you are not doing a good enough job is really hard to take.

sarah1975uk

Thought things were going too well., Got a phone call Friday saying son not allowed in the office because he wont be covered on the insurance. Spoke to social services again and they are trying to help me out with childcare but think the way they are talking it will just be a case of them giving me some money to pay someone myself to look after him:( easier said than done finding someone to look after him myself as i dont have a great social network of friends and the ones i do have work and have their own kids to worry about. Monday tomorow and he is due to be going to the centre the lea are running from 9am to 1pm. but this wont give me enough time to do my contracted hours at work = less money now:( and son only allowed in the unit monday to thursday:( Because he is now permanently excluded now LEA are supposed to provide full time education for him..but are not saying havent got the resources! what can i do about that? legal obligation is a legal obligation surely, if they havent got the resourses thats not my problem, they should make resourses happen.

Savvy_Sue

Phone IPSEA as soon as you can.

blue_monkey_2

Sarah,

Give that childrens legal advice line a call from a few pages back - see what they have to say. Looks lik it will be free but at least they might have more weight. I would have thought that if you can get sent to prison for not sending your child to school then THEY are the ones exclusing him so THEY have the legal obligation to find him somewhere to be taught. Give them a call, you won't know unless you ask.

I have to confess that today I took Ryan to a party DD has been invited to and it was a huge mistake. I kept on asing him to behnave he was under the tables and chairs, the other mums were asking him to get out, he was running around while the other kids were watching the entertainer - so I gave him 3 warnings before I dragged him out (yes, he refused to walk with all the other mums watching as well) and took him home to hubby (who had just got in the bath, LOL!!). One of the mum who knows about Ryan said to me that I should hav not taken him home but I said there was nothing more I could really do. not many people know what he has and to everyone else he just looks like an uncontrolable brat. Today was the first time I felt so embarrassd that he would not do anything I told him and he was doing all his facial movements, noises and pointing and he bit himself really hard and hurt himself (which is a fair) I guess it is only when they are in a confined area with a lot of other children you can see how they act and Ryan is nothing like them at all and does 'odd' things. Made me feel a bit about things. I thought that today I could have done with 'the badge' or something so i did not feel I should have to explain to people about him running around but then you get to thinking 'am I using this as an excuse for not making him behave?'. And that is what i wonder sometimes, am I making excuses for him, should people have to put up with him being disruptive and disobediant. It is not like I left him to it I had to keep on getting up to get him and bringing him back to me but he refused to stay. So what would everyone else have done out of interest. I feel like I am doing everything wrong these days as far as Ryan is concerned.

sarah1975uk

i called the childrens legal service last week but havent herd back from them, probably will do tomorrow.

What can be done here ? regarding the fact they are only providing part time care? as i said not my problem they cant the fact is they should be!