Aspergers/ASD support thread

Snaggles

NPM, if you need to rant, it's best to get it out of your system, so please don't apologise....we all need to get things off our chests sometimes.

It is soooo hard at times, and school holidays are a nightmare - have you looked into any holiday activities that might be suitable for him? If you have any local support groups, they might have details of those sorts of things.

Does he have any special interests? Can you tailor your days out around those? Ryan loves things like the Science Museum, or anywhere with a really cool adventure playground. Or even better, a theme park, but obviously that's too expensive to do on a regular basis.

This website is fantastic: http://www.dayoutwiththekids.co.uk/ for anyone struggling to find things to do locally. We have found that even some places that sound a bit dull can end up being great days out.

Another thing that occurred to me is, are you getting any ongoing support? We are on a course run by the Cygnet Group which is really helping us get an understanding of why Ryan behaves how he does, and they have also told us that Parent Partnership are good people to contact if you are having problems at home (as any help you get tends to be directed at school etc, rather than at home).

Sarahsaver

I dont know if this will help anyone but DS is having a meltdown which has been escalating since before 7am.
i suppose at least if it happens to you you genuinely know you are not alone;)

Nothing, absolutely NOTHING will break him out of it
I am exhausted.

halia

this is a quick post on a long subject cos I'm tired.

I have a 3 yr old boy and tbh since he was about 5 months we've felt somethign was wrong. He has had very delayed speech (its picking up now thank god) and odd behavours for over 2 yrs.

At the moment i am just struggling with him every day, he cannot sit still - even sitting watching TV at the end of a day he is all over the palce wriggling and constantly moving in his seat. He get 'stuck' if you don't do soemthign exactly right he will flip. He has odd routines he has set up for himself.
The worst part is when he gets stuck in an emotion or undesirable reaction, for example despite loving his bath he screams and struggles every time I get him ready for it.

He seems to be sensitive to stimulus, noises and texture/touch. He gets upset by the wind blowing in his face and will always notice noises.
mealtimes are a nightmare because anything can and will distract him, the best way to get him to eat is to put him in a white room with no furniture, food on the plate that can be eaten with his hands and let him loose for 30 minutes! (I know this cos we were decorating and it worked a treat).

I'm just so tired, its like at the moment every single thing we do is a fight, getting dressed because first he wants PJ trousers on because he is cold but then he screams when you try and put his proper trousers on. breakfast the toast is too cold, too hot, too dirty etc. He wants to walk to nursery but is too tired to walk, he wants to sit down but not in the pram.

I'm finding myself feeding him snack food (cheese/apple/muesli bars) all the time cos he spits other food out or just doesn't eat and he watches far too much TV (2-3hrs a day) cos its the only thing that calms him down.

Its getting harder to take him places as he either 'zones out' and just sits staring into the distance, (which really upsets DH) or he goes mental.

He has seen an educational Pysch team last year and they assessed him as having delayed speech and mild general developmental delay. It just all feels like its got harder and I dont' know how much is terrible 2's (delayed) and how much is honest to god developmental problems.

right now I hate him, i can't do anything without thinking of the effect on him, we tried going to the shops today.
only a 21/2 hr trip
we stopped for juice and biscuit somewhere he could run around
we made another stop off in a park for 20 minutes
we had plenty of snacks and drinks for him
we only went in a total of 3 shops

it was a screaming, mental nightmare the whole time. The only time his behaviuor was acceptable was at the park, and that was because running roudn spitting and flapping at birds, rolling on the ground and screaming are OK in a park - but he does that everywhere.

cheapscate

Halia, I really want to give you some hope.
My boy is diagnosed ADHD and autistic, he is now 15.
12 years ago I could easily have written the post you have just made.
Life was, quite frankly, hell. I had no support, no money and felt angry and confused about what was going on.
Now he is calm. He is at a mainstream school(with support). The difference between then and now is huge - but the changes came really slowly, and I mean really slowly! I continually reminded myself that it was not my fault and when people commented on his behaviour I would let them know that he had a disability and needed help and compassion. I attended a parenting course that I heard about and this reinforced to me that I was a good parent.
I went to the library and read everything on his conditions and how to help him. I tried really hard to let go of the guilt and accept that life is different when you have a child like this.
I actively looked for the positive things he did, rather than look at the overwhelming amount of negatives. Accepting the situation and letting yourself grieve for the life you wanted is really important.
Your child needs a super mum - and I am sure you are that already.
Time for yourself is really important - ask for help from family, friends and speak to your doctor. Join an adhd or autistic support group.
There is light at the end of the tunnel -honest!
Now I can say 'My son is special, I wouldn't change him for the whole world and I am a damn good Mum' - give it time and I,m sure you will too.

lil_me

Carrera maybe totally not relevant to your situation as I don't know your partner, but mine struggled to accept my DS1s diagnosis because he was just like he was as a child, because he had similar issues and didn't want to see himself as different. He's now accepted DS1s diagnosis, that DS2 will likely be diagnosed and that he's different himself, especially after he was offered assessment :rotfl: his face was a picture when DSs psychiatrist just out of the blue said 'It's not too late to be assessed' she haddn't even spent that long with him.

I'm with cheapscate on this one, the days never get any easier but I cope much better than I ever have. I still don't have much support apart from a group once every few months, where I end up giving advice more than getting, but I have built my own coping mechanisms in like my sons have had to. DS2 concerns me the most, previously he was the more gentle one, the one who liked close tight hugs unlike his much more distant brother (2 opposites) but as he gets older and more frustrated with the communication side especially, he's becoming more violent, unfortunately as he's the largest of the boys this gets worrying so considering doing another handling course if I can find one on locally, he's nearly as tall as me and he's only 7, so need to make sure I can deal with it if he gets as rough as DS1 can.

When's a problem not your problem - when it's someone elses! If someone else has a problem with your child/you and behaviours displayed, that is their problem not yours

People that mind don't matter and the people that matter don't mind!

Nothing is impossible, it just might take a little longer.

NEVER EVER GIVE UP ON THESE CHILDREN - IF YOU DON'T BELIEVE IN THEM, NOONE ELSE WILL!!

Chollita

Danni wrote: »

I also don't understand the concept of "How are you?". Most people who ask it don't want to know the answer, and those who do don't seem to understand that often I don't actually know how I am.

I've never got why people ask that when they don't really want to know! I've always wanted to answer 'Well, terrible actually, my dog spontaneously combusted, my house collapsed, and my entire family's perished in a freak paperclip accident, but you know, mustn't grumble ...' and just watch their face as they don't know how to react ...

PN, I think the problem for Aspies when it comes to emotional issues is that other people's reactions are very unpredictable, and when we make a response that we think is helpful or practical, it may be seen as insensitive.

Chollita

PasturesNew wrote: »

"You don't let anybody get close to you".

I said "I would. Just nobody's ever wanted to"

And that got me thinking ... I don't know about being close with anybody. About sharing. I have never been close to anybody.

Funny ... I think I am Aspie, don't know about OH, but what you said here has made me wonder again. It has occurred to me before that he could be somewhere on the spectrum, probably below me.

He was 36 when we met, and had never had a serious relationship. He's said he never wanted to before he met me. Our relationship is a bit of a rollercoaster. Sometimes great; other times he finds me difficult to deal with (what I think is my Aspie behaviour). I've told him that I think part of his problem is that he doesn't know how to compromise, having not had the experience before. Now I wonder if there are other factors ... I've also said that I think he gets mad with me because I remind him of himself (he is, by his own admission, not good at going out and meeting people, like me).

mandy.h_2

haila

you have just described my DS life at the same age down to a t my only advice i cannot stress enough is go to your gp and health visitor and insist on help and support.
My only regret is i knew there was somthing not right but allowed myself to be fobbed of with other reasons for his behaviour, i think i found it easier than accepting the true reason if i had not been he would have gotten the support in primary school he so desperatley needed. I finally went again when he was 10 and about to go change class I sat in my gps room and refused to move till he reffered him to someone, your his mum u know him best.

the guilt i have for not doing it earlier i have to live with but i have learnt know one will fight for your child u have to do it and if it upsets the so called proffesionals feelings well thats tough.

DS is 14 now not saying its a stroll in the park but u survive ( only just some days) and make the most of the good days

would not swap him for the world, id just like to make him a bit happier sometimes

good luck

fallen_angel_69

finally some positive news for a change had dd2 review at school today and they have said she has made a couple of friends (at last) she is more confident and outgoing and generally more mature than she was 12mths ago Its nice somebody has said something positive for a change although have said her dr who and torchwood obsessions haven't changed she still manages to bring both into the subject somehow and she is having the same teacher next year this is going to help wonderfully as it all the progress is down to her at school as i see it never had any positive news before

As regards to the john barrowman front if you seem to recall in jan he really upset my dd2 when he couldn't sign her panto programmme at the book signing a signed photo arrived yesterday in the post no little letter to say how he wasn't allowed to sign anything but books but a signed photo anyway for the letter and drawing she sent to him in the post and she went to bed with it on her pillow last night she was thrilled to bits to have it.Now all i have to listen to now is its only 6 mths till we go to the panto and see him again mum.

fallen_angel_69

where's everyone gone it seems ages since anyone posted on here

i was wondering has anyone heard about how blue monkey about she getting on in her new house i was subscribed to her other thread and for some reason i can't find it listed in my threads anymore

the jb photo is still next to bed 2 weeks on and is not allowed to be moved dd2 even watches and makes sure you put it back exactly when you dust it's not allowed to be any where else