Aspergers/ASD support thread

blue_monkey_2

Hi Snaggles,

Me too, from what I read it means, for example, if Ryan goes to football he might need someone to staywith him rather than you being able to go home. I have put on mine that because of Ryan's unpredidictable behaviour he is unable to attend any clubs or events away from home. It says on the cereba sheet it can mean trips to the shops, library, swimming pool - anything that is away from home. I think they are asking what help does he need and what is it. it is difficult when they are younger as there is not a lot he can do, but the things he could do he cannot as I am unble to leave him - where I could my daughter, so this is a difference.

I just have mine to check and a few bits to add and then mineis going off next week so ours will arrive on the same day

Make sure you pay for Recorded Delivery to ensure that you know it gets there. Just in case!!

blue_monkey_2

Did anyone watch the one how tonight: http://www.bbc.co.uk/theoneshow/article/2008/02/cb_smartdogs.shtml It is about a little boy with autism who has a 'smart dog'. Have a look.

That little lad was wearing a Tantrum Alert t-shirt, I have had a look at some of the stuff on eBay and I think I might get a t-shirt. Would be handy for the supermarket when I go (doing a monthly and top up shops now to save money) and it always means a tantrum. I am reading some sites to get some fedback on what other people think. I found this in the process though,it might be some help:

http://www.asdfriendly.org/board/index.php?&

Sue-UU

A very smart dog indeed BM. It seems as though Joe now has a new lease of life, Mum too and all down to Lacey and the lovely lady who heard of Joe's plight. Amazing how Lacey's acting almost as a mediator between Mother and Son, but if it works and Joe learns through her (Lacey) and his Mum, what more is there to be said! Thanks so much for putting the link on as it was really heart-warming. Sue

lil_me

blue_monkey wrote: »

Make sure you pay for Recorded Delivery to ensure that you know it gets there. Just in case!!

I was told not to bother as noone signs for them. I would however advise you take a copy of it to keep yourself. Filling in the claim form is never easy, more difficult when it is for your child as you are forced to focus on the negatives all the time. DLA claims more recently seem to be requesting doctor visits if they haven't been seen by a proffesional involved with their care recently, in most cases with ASD related conditions the children are seen on a regular basis.

Snaggles an example I gave for the 'what would they do' etc is my son is able to go to a swimming pool with supervision of support workers who attend with him, other children his age are able to go in alone, dress themselves, dry themselves etc where as my son can not.

Another point with DLA is you don't need a diagnosis of anything to claim and a diagnosis shouldn't effect a claim. What matters is the care/mobility needs of the child. If the child needs more care/supervision/attention than other children of the same age then it is worth applying, the worst that can be said is no.

As far as the tshirt etc goes I wouldn't put my son in one which aimed to 'excuse' his behaviour before it occurs. I disagree with those who make a very large profit from parents for the products, I was quoted £3 each on a small order of similar printed tshirts which would get cheaper with larger orders. I agree everyone has to make money some how but I have no idea how they can justify charging what they do for a lot of the items (prices are shocking on most of the items available! some of the NAS priced ones are more 'realistic') knowing a parent or carer of a disabled child is paying for it, I wouldn't be able to sleep at night!

Savvy_Sue

Taking a copy is ESSENTIAL because if you need to appeal you need to know exactly what you said, and if you get it you'll have to re-apply in a few years' time so knowing what you said before will be useful.

LilySue

Yes, I so agree about taking a copy, only remembered to do this when I re-applied this year, previously had been sweating somewhat tearfully through the form afresh every time.

Blue Monkey, I loved that clip of Joe, Lacey and his Mum, I remember reading once about the fact that autistic children in British Columbia get their own dogs, sounds like a great idea, I know that when our Hamish was small he seemed to relate much better to animals than to humans.

fallen_angel_69

i think i'd have really hard time having a dog in my house dd1 is actually petrified of them won't even go past one in street she has to cross over rd or we have to take a detour to go past it although dd2 would be absolutley delighted she is mad on animals and wants to be a vet when she is older.
Have had a real contrasting week of school reports this week dd1 in trouble disruptive could do better all the usual really but dd2 has really improved since i've been getting her extra maths lesson will contribute in class now and her teacher says she has got a bit more confident now
Talking dd2 she has heard nothing from jb as yet but has anouced on his website he is doing the panto this year agian in birmingham it's not listed on there site as yet but we're going twice again. i booked straightaway at christmas to go once and paid full price didn't realise they did discount for dla recievers,booked again today for last day apparently best day to go so she all excited again and instead of eggs for easter this year she has new dr who and torchwood posters for bedroom

Princess_Sparkles

Hello All,
First time poster, so bear with me.. I've been reading all these posts and my heart has gone out to all of you as you struggle. I just wanted to tell you about my DS,('scuse me as my heart swells with pride & love). My son is now 20 yrs old. He has Aspergers & togther we have been through sooo much. The bullying at school, his huge frustration at the way his world didn't fit, certain teachers who should at best be ashamed of themselves, and more specifically should go back to school to learn about diversity properly (it isn't always about race or language you know..).
I could go on at length about the sleepless night worrying about him & his future, the times my heart broke for him as he was exploited by other kids as he made tentative forays into friendship (that stopped completely when at the age of 9 he realised he couldn't trust anyone outside the family.) So please belive me when I say I really know what you're all going through.
What I really wanted to say was that through his determination and the help of one or two more enlightened individual teachers DS is now in his second year at university and happier than I have ever seen him. (In fact he chooses to stay there through most of th holidays - something I cannot take personally, its part of him being safe in his world.) Yesterday he told me something that made me cry - he has friends!!!!! Theres much more to this & I'm leaving huge lumps out because I don't want to bore you but I just wanted to say don't ever give up - take things slowly & believe in your child. It is horrendous at times but keep putting one foot in front of the other (with the necessary chocolate/gin breaks of course..) and things will get better. I always felt I was the only advocate he had & i just couldn't let him down. Don't imagine I don't still lay awake scared for him, but the man that stands before me now, although still an aspie, seems to have found his road at last! Much love to you all.

Olliebeak

I'm another first time poster on here and my concerns are about my DGS1 who is now 6 (almost 7).

He has had 'challenging behaviour' since about the age of 2 or 3 when we noticed that the word 'No' had an alarming effect on him. But you find ways around that one - offer alternatives rather than an outright 'No'. When he started Nursery, it became apparent that his behaviour was not what would be considered 'usual' even for age 3. When asked to sit down for story-time, he would wander around the nursery playing with toys that had been 'put away' or crawl around underneath tables. 'Sitting and listening' is not something that comes easily to him. At the age of 4, he went into 'Reception Class' where he was expected to concentrate to some degree, and it was noticed that his concentration levels were almost non-existant. At this time, the school started to offer extra support/help for him in a small group. This help has continued throughout his time in school but has had to be increased. His reading skills are very poor for his age, although he does seem to be far better with numeracy skills. He also takes great interest in what the school calls 'science projects' and computers. When he does 'show progress in reading/writing', he rarely retains the progress. The one thing that he CAN do ahead of most of the class is - he can tell the time - again it's numbers!

Now in Year 2, he spends his playtimes searching out the company of much younger children (age 4 Reception Class) as he has more in common with them than he does with his peergroup. When his mum/dad take him to school, he will look around the playground and, if he doesn't see anybody that he feels comfortable with, he will stand and face the school wall alone. This is heartbreaking to see. Next year, he will have to go into another playground, where he will be among the youngest children - this is going to prove difficult for him to relate to the other children around him.

He is an extremely lovable little boy, but can throw the most amazing strops when thwarted in some way. He has been known to throw things in temper. He does not respond well to changes in his routines. When he's accidentally locked himself in my downstairs toilet, he has screamed the place down hysterically and cannot be reasoned with. He is not very good at dressing himself and always looks for excuses not to do PE (says he hasn't got his kit when he has). When asked what he's done in school today, he refuses to give any answers. He is fascinated by all things electric (lights, plugs, switches, wires etc) - for years he has altered the thermostat on my fridge/freezer without my knowing he's done it - so we have to check whenever he's been to the house!

My daughter and son-in-law are at their wit's end with what is going on with him. He's been referred to the Ed Psych who has done an assessment - he doesn't think, based on some of my daughter's answers to his questions, that my grandson has ASD though there is some degree of ADHD. Personally, I think that my daughter was possibly confused by some of the questions (she says she can't remember what she was asked about his behaviour/habits/traits). My son-in-law appears to be looking for 'something to fix the problem'. At the last meeting, two weeks ago, there was a decision to ask for extra funding so that more support can be 'bought into the school' - with the opportunity to go for 'statementing' if the extra help doesn't appear to be beneficial. My dd and s-i-l feel that everything is dragging on without any progress being made.

This evening, my daughter has been in tears over his behaviour while shopping in Tesco's. Apparently he climbed into the freezer cabinets. When pulled out and told off, he did it again. He's never done that when out with me, although he is prone to wandering off if 'something catches his attention'. I have suggested to my daughter that, she should wait until his dad is around so that shopping is a 'shared effort' - there is an older girl of 9 and a baby of 4 months. He really does require 100% of your attention when out somewhere.

Sorry for going on a bit, it's helped getting it all down and thanks for your patience in reading this.

Snaggles

Princess Sparkles - that was a lovely post, it brought tears to my eyes. How proud of your son you must be. It must be hard to take when he chooses to stay at uni through the holidays, but you support his decision and try to understand it, even though it hurts you, and as a Mum that is the hardest thing to do.

Olliebeak, welcome - your daughter does sound to be having a hard time of it.n Any kind of diagnosis seems to take forever to happen, and it can be so frustrating when no-one seems to take your concerns seriously. Just keep supporting your daughter and reassure her that she is coping really well. Not all Grandparents are as supportive as you sound, so she is lucky to have you.

Supermarkets seem to be especially problematic for many of our children, and I recently had a massive insight into why this is. I had an ear infection (in fact I've had it for months), and it has affected my hearing somewhat. For some reason, the noise in a supermarket is the MOST difficult to deal with. It's not the volume, it's the number of different noises all at once, and the echoeyness.

When my hubby or DS speak to me in the supermarket, I find focussing on their voices incredibly difficult - it's like I'm lost in my own little world, and their words are like a tiny pinprick of light in the distance that I try to focus on but can't quite see. It makes me feel completely alone, anxious, stressed and angry, and a few times I have snapped at them through sheer frustration and unhappiness.

And Ryan lives with that feeling his whole life.

We are having a bit of a rough period with Ryan at the moment. I'm not sure why really, I can't think of anything that has caused upheaval or upset. The other day he had a huge meltdown that involved throwing furniture around (where do they get their strength when they are like that?!), and stabbing a (luckily blunt and plastic) toy into my throat (no major damage but it scared me and made me panic about what the future would bring).

He realises that he's going through a bad patch too, which is even more heartbreaking, as I can see him turning his anger in on himself again, which is something we haven't seen for a few months.

All I can do is keep trying with him though. He's been in trouble at school too, for being aggressive with other children. Apparently I should be trying to teach him that 'aggression isn't acceptable'. Silly me, why didn't I think of that....:rolleyes: