Cariad

Thanks both, I had to have a rant and get it off my chest. I feel much better now..

Last night was awful, it's never good but he exceeded himself!! It was a late night last night they all got ot bed at 10.30pm as the girls had a school disco.. I did his usual routine, he didn't want a number two but sat on the loo for 30 minutes. Then he called non stop for anything and everything.. I finally got to bed at midnight, then the sniffing starts *snifffff sniff sniff* and clearing of the throat on volume number 11. I gave him his nasal spray and vicks and blew his nose and gave him a drink as he has hayfever. Then he decides to get up and *play* and stamps about which echo's throughout the house. I put him back to bed about 10 times, by now it's 4am. I had a cup of tea and went up again, then tried to sleep and ignore the sniffing. The Alarm goes off, I can't see as I have a migraine and a banging headache.. T is asleep and then gets up after 2 HOURS OF SLEEP feeling fine and then poos in his pull up which falls out in the dining room.. I'm sooooooooo worn out as he didn't settle last night or the night before. On another note who's children get hay fever and how can you stop it at night? I do the usual no window open, washing of hair etc but he's terrible!

I get those days too, everything spills out.. <'>

http://news.bbc.co.uk/player/nol/newsid_70...ws=1&news=1 If you go two minutes in you can see the event Mr Cariad attended, he isn't on there and was obscured by several people and was at the back

LOL Mumble, I think you are right, all the ASD people could squeeze into Wales and maybe if they are in one area they could channel all the money into *rainy atm* Wales :lol: Mr Cariad did well, said his part about the lack of funding etc and even suggested why isn't there a helpline for times when we are at the end of our tether with meltdowns with our ASD children. Wouldn't it be nice to have someone who knows all about Autism on the end of the phone 24/7. Even a youth club geared for ASD..anything? I know it will probably never happen, we can all live in Hope.

Apparently I already get it, now to sort out my Annual Declaration for tax credits

The DH and I were watching this programme last night about benefit fraud. Then they showed this lady with 3 children, she had an autistic son. They showed her on the phone asking about how much her carer's money would go down if her son went to a special boarding school. Then she said "So you are saying we have missed out on disabled child premium and thousands of pounds we are entitled to" I've never heard of it? Does anyone get it?

at this: http://www.dcmw.org.uk/news.cfm He's going to say our story and speak on behalf of others who just don't get the help and support we need. He'll be bringing up how there aren't enough resources for children with Autism in Wales. I hope they listen and throw some money into ASD schemes in and around Cardiff.

That sounds fab KarenT, I wish they had something like that in Cardiff. He'll have a great time I'm sure

Death hit T really bad when his grandad died last year, he was 58 years old. They did everything together and they were very close. He started fantasising about death and wanted to jump in front of a car.. It was a tough time.. We did get a diary and he did drawings of how he felt, and we had to keep a close eye on him as he "wanted to be with him and go to heaven". Sorry this is all happening to you <'>

I think we have the lot Enid, we have CAHMS and a psychologist who comes to the house every 2 weeks and respite etc. He is so complex and I feel like I'm not getting anywhere with him. Saying about his brain not working etc worries me, what is going on in there? A book I've got is helpful about AS and I have tried them out, but it's the meltdowns and mornings try me mad. Also his food, only burgers and toast and coco pops

A bottle more like, I could do with a vineyard with T lol

Enid I've read your posts and it's so draining. You just know that once they start you can kiss goodbye to the day/night, it's so horrible. I'm worried about the things he says. He said "The screaming got the bad toby out and I'm fixed" he says there are duffesses in his head..he is talking to himself more and more..

I've managed to put him in the bed with me and cuddle him and take him out of his room away from DH, he had worked himself up soooooooo much he couldn't stop. Sorry to sound like a drama lama but that was really bad.. The DH is now reading Dr Who to him.. I'll be taping that onto a DVD and showing his teacher and therapist, thanks everyone who replied, I really appreciate it a lot! <'>

He's got back from trampolining and has gone downhill from there. He was "talking to his mind" in the bath and he screamed at me as I asked what he said as I thought he was talking to me. He is very obsessed with Mario and said the good "T" has gone and has been replaced by the bad "T".. He said he can't sleep, eat and he is bad, he can only be ok playing Mario. He's wrecked his room, given himself a nosebleed hit me, kicked me and he has been doing this for 2 hours now. He has recently had his doseage put up from 10 mg fast release and then 30mg slow release ritalin, to 10 mg fast release in morning and 40 mg in the afternoon. He's uncontrollable.. I've taped him on the camcorder as it's really bad, he won't stop shouting and swearing and shrieking. Is it the constant Mario playing (he does have breaks) or the increase in dosage, and how can I calm him down. I'm so worn out He is now being held down by the DH as he is biting and lashing out.

Elun, I get days of pure helplessness and think why me.. I so know where you are coming from. Sometimes I think is there a god up there testing me and am I winning? <'> Also I got sent to counselling, I tried through the NHS and she was hopeless. In the end I had to pay �60 an hour, I went twice and couldn't afford to anymore. So now I drink a bottle of wine most nights and eat junk.. Maybe I might shift my crutch to working out at the gym

Gene Hunt and Sam Tyler sandwich..YUM! As you were

Yes please, T is 12 and is developing very fast down below and is very sexually aware, it makes showering him a bit more for me. I'm wondering how to tell him in an AS way about sex and girls. ATM is all crude with him and lad talk, he talks about "humping" things and I try to change the subject *gulp*..

I read a few bits out of it and I felt a strange calmness creep over me last night. Things suddenly started clicking, I could see my faults and why T goes ballistic and where I can fuel the tantrum. I sat by him while he was in the bath and had a lovely conversation about Mr Bean the movie, we even laughed about it.. I really don't spend enough time with him, it's eaten up by his sisters and housework and life. So after delving into the book I'm going to make time to have a conversation everynight about whatever. Just had to get that down as I'm feeling rather proud of myself, I'm usually at the end of my tether 24/7

Hi Peaches I have one if you want it. It was a bit babyish for the DS as he's almost 13 now and didn't like it much. PM me your address and I'll mail it to you

I think they both have their challenges, it's unfair that you can only have respite and some services if they have a low IQ, the thing is you still are exhausted and worn out if they are severe or HFA!! <'>

LOL I just replied to your other post, I'm not stalking you honest.. T is like this, he doesn't like sleep, he's "allergic" to it he says What I found helped is activities where they can bounce on a trampoline or run or anything which will tire them. Then the same routine every night, sit on the loo with a Dr Who magazine for a number 2 (a typical man he takes up to an hour), then a warm bath to relax, his comfy PJ's and dressing gown. Then we have some toast and warm milk, then a quick story and a night light on. The night light took months to get in his room as he was scared of the dark, but the light made him even more awake when brightly shining in his face. T does call down for about an hour for silly things and is still awake until around midnight, he will eventually drop off with "planet rock" on the radio as he likes background noise. He is up around 5.30 - 6am as he could hear a pin drop in his sleep and has never slept in. So my advise is try a routine and stick to it, or if you are desperate try melatonin from your GP, not all GP's like it though and aren't convinced it works. It worked for T for a while then had no effect.

Good luck Freedom, I've been through this and thought I was going to have a breakdown!!! The amount of time and work you have to put in to get the right help for our children is unbelievable, the DH and I would be up until the early hours emailing, photo copying and reading up on things. The phone bill was huge and we were totally exhausted! I hope you get whats right, as I noticed your child is very complex as is mine, which makes it even less cut and dried.

Thanks all, it's just important that the DX is right. I'm going to get some books and read up as I'm not handling him very well ATM, and I want to get the know him a little better.

From the beginning we had a battle on our hands as at 19 months it was clear DS wasn't like the others. So half of his brain is flat so they (or we found the DX) and said he had cerebellar ataxia and they agreed 100% or they said it could be mild CP. A few years later T starts playing up, is behind with his peers, and starts ticking and swearing, so he gets DX with Tourettes. So I try to find a school with a unit who knows about Tourettes. Then everyone including his teacher says he is Autistic so after two years of fighting I get to see a Professor in the hospital who diagnoses him with ASD, ADHD, TS (later SID). Now his behavioural therapist who is helping us with him say he is Aspergers not ASD. He does have learning difficulties though, she said it was his social and ADHD problems stopping him from learning as he has had an IQ of 95 plus and tests can be spiky and never the same. Now I'm confused, as his friend is Aspergers and is totally different to him, his friend is alert, very clever and intense (he has ADHD also) I am so confused to where his DX lies, can anyone else shed some light on it?