Aspergers/ASD support thread

D&DD

rovers wrote: »

Thanks SavvySue for such an kind and thoughtful post. I really appreciate it. I've tried the measles line on MIL (we're the only one who has MMRed her grandchildren.....)she'll just see this as evidence. luckily dad is on board. i don't know how to explain this to my son who as the assessment team said "tries soo hard to be normal". will sleep on it and hope it's clearer in themorning. thanks again.

Hi Rovers have a huge hug from me too the next few days you may go through every emotion known to mankind but you WILL come through it
Give the National Autistic Society a ring tomorrow if you haven't already they have a wealth of info they send out to newly diagnosed parents.As for your darling boy..he hasn't changed..you just have gained the tools now to know how to help him by getting the diagnosis :T
With the extended family it will take time..they may never come to terms with his DX or know how to deal with you over it,take it slowly and only tell them what you feel comfortable with..
DO NOT EVER FEEL GUILTY!!!!!!!! It is nobodies fault!!!
Best of luck on your special journey

quietheart

D&DD, thanks so much. might wait til Monday but do plan to call the NAS, think i'd blub tomorrow and that wouldn't make anyone feel good. i keep just thinking "my child's autistic" and i can't quite believe it. i do believe it, i understand the evidence but probably don't want to believe it's always gonna be a struggle for him. i know realistically it's good to have a diagnosis, it's good to be able to get support, it's good to know I was right that something was up and I wasn't just the over-anxious parent that I was accused of being so many times. I just didn't expect to be told comparing his IQ to his spoken and written abilities is "very worrying". too much info going round my head tonight. thanks for your help.

D&DD

Dear Rovers we are always being told what they will not do and won't/can't achieve but our kids are just the same *with added bits* as any other kids and they surprise you everyday
I was told my son would never read,talk,understand many things but he has proven so many experts wrong:T They never took into account his spirit and although he has learning difficulties and a speech&language disorder(& other bits won't bore you with the list lol) thrown in he has learnt to read and can write his name and a few other bits too
(He's 9 by the way )He does learn but just in his own way..he is a very visual learner so we have learned over the years to concentrate on his strengths and use his 'obsessions' to help him learn things.Have you any local support/other parents who can help you through the early days when you feel ready to talk about it??

Savvy_Sue

rovers, I don't know how you talk to a younger child than mine about it, but I am sure the NAS will have some advice, and I will recommend The Blue Bottle Mystery by Kathy Hoopmann, and I'm sure she's written other books too. It's a delightful book about a child of primary school age with AS and how he both struggles and copes with different things.

You may find - and I hope you do, especially as time goes by - that your child actually copes better because he KNOWS he is different to other children. I guess the key thing is that it's OK to be different.

My friend who said "I'm one of them!" said that when he was a teenager, he was miserable for a while because he was trying to be like everyone else, and couldn't. Once he realised he couldn't, and stopped trying, he was a whole lot happier in himself. Our biggest worry on moving was that DS1 would be hitting the teenage years just as he'd 'lost' the few friends he had. In fact he coped the best of our boys with the move, and made a new bunch of friends who made him look positively boring! :rotfl:

Snaggles

Hi Rovers, first of all (((hugs))) because no matter how much you prepare yourself, I think it must still be a shock when you finally get a diagnosis.

If your MIL is intent on blaming you for the MMR, there's not much you can do about her ill-informed leap to a half baked conclusion. BUT there is something you can do about how you react to it. I'm a big believer in not giving attention to behaviours you don't want to see, so I would just politely ignore her. Don't get drawn into an argument, no matter how tempting it is, or whatever ridiculous accusations she makes. Hold your head up high sweetie, you have done NOTHING wrong.

I don't yet have a diagnosis for my son, I am hoping we will have one by Xmas, but I'm not sure. I am more worried that they will say he doesn't have Aspergers than that they will say he does, because at least if he has a definite diagnosis, I feel he will get more of the support he needs.

But there's a little voice at the back of my head that keeps saying 'if you were a better parent, he wouldn't be like this'. I try not to listen to it though, because I know (or at least, hope) it's telling me lies.

I wish you all the very best, and remember, getting a diagnosis isn't the end, it's the beginning.

xxx

quietheart

Thanks for the kind words.
MIL has been giving me earache since the day we had DS1 jabbed. I've tried to reason with her and luckily I'm totally behind the vaccine but she has english as a second language and just shouts "you are stabbing your babies with poison" so it's quite hard to ignore! There won't be any benefit to them knowing, just "i told you so" so I don't think we can do it.
I spent today at the xmas fair in the grotto, i was so acutely aware of the kids in my son's class and suddenly they seem so different to him. he isn't classic aspergers at all. he doesn't have any particular interests, he doesn't have advanced language, he just struggles with understanding what on earth is going on around him.
What about your kids, what have been the toughest things for them? What support do they get at school? Do they have any outside help?

Snaggles

Oh no rovers, she sounds like an absolute nightmare. I wouldn't even dignify such a ridiculous statement with a response. Could your OH have a word with her? It doesn't seem fair at all that you are putting up with such awful treatment.

The toughest thing for Ryan is school in general. He doesn't understand things sometimes, but his language skills cover this up, so people don't make allowances for him (and he has been shouted at several times because he's said he didn't understand something, and his teachers haven't believed him). So then he gets frustrated, angry, aggressive, ends up in trouble, his self esteem plummets.....it's like a vicious circle sometimes.

They ARE now starting to give him some help at school, but he wont really get any 'official' help unless his diagnosis is confirmed.

We are doing a 'Parent Survival Course', which isn't particularly aimed at Aspergers children, more at families who are having difficulties (of any kind) with their childrens behaviour, and while it's not having a major impact on how Ryan behaves, it's definitely helping us cope much better.

Savvy_Sue

Snaggles wrote: »

But there's a little voice at the back of my head that keeps saying 'if you were a better parent, he wouldn't be like this'. I try not to listen to it though, because I know (or at least, hope) it's telling me lies.

Snaggles, Rovers, all the rest of you out there, IT'S NOT YOUR FAULT! NEVER listen to that voice.

DS2 is a bit weird too, IMO. He WANTS to study Maths at Cambridge - wait for it - FOR THE FUN OF IT! :rotfl: Is that my fault too? If I'd read him more poetry, would he want to read English?

And as for DS3 - where did I go wrong there? He wants to do Philosophy A level! :rotfl: With Physics and Chemistry!

(Of course, I have to admit that genes may be involved here - their Dad did Maths and Philosophy at Uni, and my uncle did degrees in Chemistry and then Maths at Cambridge ...)

So, let's get this straight. If you were a DIFFERENT parent, your child might be DIFFERENT. But they'd still have AS, ADHD, blue eyes, brown hair, big feet, a delightful smile (however rarely seen). However, you are most definitely the BEST PARENT YOUR CHILD WILL EVER HAVE! No-one could love them more or care for them better.

You MAY, no you almost certainly WILL, be able to mitigate the effects of their lack of ability to cope with 'normal' life - whatever that is - now you know there's a problem. And of course it's not just THEIR problem, it's now the whole family's problem, and the school's problem. It's something to work on together.

Can you tell I've heard that little voice too? Actually, I've also imagined / felt huge waves of disapproval coming my way because my boys didn't ever enjoy the happy clappy children's bit of church services ...

Where's the raspberry blowing smiley when you need it ... That's your best response!

Snaggles

Fantastic post Savvy, thanks! You are absolutely right of course. I don't think we have a raspberry blowing smiley, will this do?

But.....studying maths for fun??? Sorry hun, but that IS weird!!! :rotfl:




(only kidding I actually find maths really quite interesting too :eek:)

D&DD

Hi everyone
Savvy lol you are blessed in this day and age to have kids that wish to study at all!!
Snaggles..I so know where you're coming from re the DX..I was worried sick he wouldn't match their criteria but worried sick that he would :eek: I understand completely..in our area(sadly) it means a difference having a label,without one you get nothing..no statement,no help at all..

Rovers...hmm It doesn't sound like she'll ever 'get it' so leave her to come around in her own time..she may do,I was going to suggest if she likes to read lending her a few books such as Daniel isn't Talking,it has a lot of info about Autism in it but wrapped up in a good story Eye contact is another good one or Worm in the bud..(can you tell I have such an interesting library lol)
You both (Rovers and snaggles) must persue the SALT as if your kids have trouble processing language (understanding what is said/finding the right words to answer/seperating a lot of noise in a busy room)this is the thing my son is struggling with the most now he's 9...The language at school has 'changed' to more complex and grown up now..I noticed the gap has leapt this year between him and the other kids in his class..