Aspergers/ASD support thread

jb1964

Brenny wrote:

Just looked at link to Amazon in JS's post and the book I read was Asperger Syndrome, the Universe and Everything; ~ Kenneth Hall (on same link!)

Brenny

We've read this - it one was of the first ones we read and it was excellent. It's only a small book and we gave it to our daughter to read to let her know she wasn't on her own - she couldn't get over there were other children that knew how she felt. The other one she read was 'Freaks, Geeks and Asperger Syndrome' by Luke Jackson, which was just as good.

With reference to the knickers, Matalan - a 10pair pack with very fine loose elastic around the edges. Trouble is 11-12yrs is the largest they do. Tried other brands, M&S, BHS, Asda, Tesco, Woolworths etc - and if I remember the Woolworths one came a close second so will probably look there next time

D&DD

moo842 wrote:

we are trying to get my 3 yr old son diagnosed with aspergers at the mo... why don't they listen!
he always wants a jumper on even mid summer, and buying him new clothes is the biggest nightmare ever. he won't wear anything new so it is a physical battle to try and get new stuff on him!! i'm dreading as he gets older, anyway i just wanted to ask all those with autistic children, did it get worse as they got older or have you known since they were little. we have been told that it is very rare for a 3 year old to be diagnosed, so am terrified that its just gonna get worse.
sorry to kidnap your post!

In reply to your question Moo I always knew there was 'something' just couldnt put my finger on it..We had headbutting,grunting instead of speech and were just told he was lazy :rolleyes: Good on you if you're heading towards a diagnosis already it took us from when he was 2 til he was nearly 7 to get one here!A lot of people dont like labels but in the school world it does help I have to say, at least where I live.I didn't really have the mourning stage a lot of parents experience because I already 'knew' but I do count myself very lucky to be able to be his mum and know he's dearly loved for just who he is.There are many blessings that come with having a special child as well as all the ups and downs.Do look to the NAS (national autistic society) for support if you need it they are fantastic and also contact a family are very supportive. With the right support (which does sometimes takes a while to find)you will be okay.Other parents are a godsend to talk to I often ask how is my boy going to be??The answer is noone really knows but other parents will help you all they can and tell you what works for them.Our kids are their own little puzzle and finding out what works for them is a long and often tiring road but you WILL get there :grouphug:

moo842

you hot the nail on thehead with something you just can't put your finger on.. i guess i knew from a baby that something was wrong, he hardly smiled, never really made eye contact and at 2 years old still didn't speak, (well 3 words mama, dada and baba) he used to headbutt the floor at around six months and i was told it was his teething, then it was because i fussed too much...
we're trying desperately to get him diagnosed as i'm so sure this is what he has, 1/2 the proffesionals agree, the other half...the ones that do his progress tests say he's advancing too quickly to be autistic, but he is so clever and he remembers the tests. i'm sure he does.
clothes are my biggest stress, as it upsets me so much when he gets distressed and all they say when i ask what to do, is if it's not going to cause problems in the future let his little whims go as it's a comfort, but it is causing problems but they don't listen.
sorry to ramble, i just find this so hard and have had a bit of a bad week with him. in fact can i ask... is it normal to have good and bad days, where some days they seem less as than others?

ozzyfan_2

Hi Brenny

have pm'd you

blue-kat

my 10 yr son has been referred for 2 day assessment for AS/ASD. He's previously been dx-d with aspects of PDD/ADD + severe dyslexia yada yada

I've spend hours searching for comfy undies too

Marks do plain boxers which he finds acceptable. currently onlyshowing grey + white colours. they also do navy.
he wears them back to front and there is a small opening which would need to be sewn up for a girl. Call them French knickers then they are for girls:rolleyes:.
I'd suggest avoiding the boxers that are cotton jersery attached to a 1" elastic piece. The plain ones have a folder-over piece to carry the elastic, my son says these are the most comfy,( also the cheapest ) and refuses to wear all others.

also Matalan do seamless ladies knicks which are v v comfy:D

KWYM about difficulty finding the inbetween sizing for girls, when they grow out of kids sizes but ladies are too big.
BHS does some teen size knickers.

good luck !

D&DD

oh yes there are good days and bad days and there are bloody awful ones when he still won't even wear pants apart from on his head! I remember when he was 3 and it was a really tough time for us..I was trying to work still (2 jobs) due to debts so a dear friend babysat as she was the only other person who could cope with him.Hubby at that stage still had his head well and truly in the sand (my boy's normal) so I was on my own..He frequently escaped the house,naked most of the time :eek:(son not hubby) ,destroyed our walls with a stick,damaged my pubic bone with a headbutt.. oh the list goes on..But I will say this you do learn in time what sets them off,what not to do,say etc..Its a steep learning curve and extremely hard work but believe me you WILL cope.I was at my wits end with the behaviour by that age,our saving grace was the school.They gave me a couple of hours sanity a day which got me through the worst time behaviourwise,they also started the ball rolling with the specialists.You have survived probably the worst year so its hopefully onwards and upwards from here on in!On a more positive note we saw a great improvement with him moodwise after starting him on eyeq,as I say thats one part of his particular puzzle,you will as time goes on find yours.Some people advocate diet changes for our kids and I also follow some of these ideas as I say you see what works for you and your family.We just had parents day on Friday and they are so pleased with him at school he has other learning difficulties and physical bits too but can now read :T little bits perhaps but he's getting there,he can write his name and if you put him anywhere near a computer he's a genius LOL..He's a very visual learner which it took us a while to find what that meant but now we have learnt how to communicate with him we are chugging along nicely..
On the clothes issue as I say we still have issues now at 7..once he started school we seemed to crack it,he stripped off as soon as he got home again but 2 hours per day was a good acheivement for him!Labels can be a pest and certain fabrics/colors even.He has a thing about army gear so we do give in to that but use bribery for school time,well you can wear those when you get home sort of thing now hes older it is easier but we did still end up going as Darth Vader complete with talking helmet on mufti day :rolleyes:

Zziggi

Our health visitor has been quite involved with my DS since he was born as he has a few health probs. Last christmas she came round and asked me if she could refer him for assessment due to "social communication difficulties". Reading between the lines a bit of direct questioning at a later date, she suspects he has aspergers and wants him checking out before he starts school. I was extremely shocked when she first told us she wanted him to be assessed but really i should be please that she has doen her job, noticed difficulties and is referring him on. He does have some "odd" behaviours, strict routines and a bit of an obsession about clean things ( REALLY hopign it doesn't become hygiene OCD) and things that must stand on their own and not touch (toy cars, food, furniture). He won't have anyone come anywhere near the front door with their shoes on. They have to take them off before even coming in the house and then he "checks" them and hides them. Even the postie! (fortunately he has an autistic son so is kinds used to quirky kids).I always put this down to his age 2/3 yrs. He also has an issue with clothes - never connected it until i read this thread. He is still at the toilet training stage (very late in this respect) He will be persuaded to wear pants but not trousers. I can just about get him to keep trousers on when we are out but as soon as we are home he whips them off. I've told him to keep his pants on because "big boys" don;t show everyone their bits so we need to keep pants on. Kind of reluctantly he accepts this. I am trying to get him to wear soft shorts. My logic was that he may get cold legs but if he will wear shorts then he is more covered up and i am not having to constantly watch him when we are out in case he starts trying to take his trousers off in the middle of Asda!!!

I only really began to wonder when he started at pre-school and avoided all the other kids, was quite aloof and uninterested in them and ran away to hide when there was any noise or if it was busy at the start/end of the sessions. Only when he was put with his peers that i started to notice he was markedly different in some areas.I'm really worried about how he will cope with school. To me he is just a lovely adorable, quirky, little boy.

Brenny

There are a few things I have learnt - AS kids are usually of above normal intelligence so try and drum that into them - DD (who is 25) is very able and intelligent but she is convinced she "is thick". She was never diagnosed and had bad time at school, especially in last year (when I managed to get her there!) and no amount of telling her she is intelligent goes in. DD and DGD (7) extremely able on computer. And I have just started the reward scheme talked about in Asperger Syndrome, the Universe and Everything; ~ Kenneth Hall, which is having great results in DGD's behaviour. (Costs a bit to keep going though!)

There is no cure, but just being diagnosed is such a help because DGD not just being written off as being a naughty child and you do find that people become more tolerant towards them.

Savvy_Sue

There's another book with bluebottle in the title which is a good one for younger children. The Freaks, Geeks and AS is probably best for teens. And of course the Curious Incident of the Dog in the Night-Time is good for older children and parents!

Too late to go book-hunting tonight: will try to do so tomorrow if no-one beats me to it.

kabie

Blue Bottle Mystery : An Asperger Adventure
by Kathy Hoopmann

Think that must be the one you mean?

I wouldn't take the early dx to be anything scary; AS isn't usually diagnosed that early but ASD often is. (or ASC if you're up to speed apparently).

My son was dx at about 5 (ASD) but at age 3 he was much more flappy and communication resistant that at 5: it was the nursery that first picked something up, I thought he was a pretty regular child.
My younger son though I thought was pretty odd (still do) but he seems to be pretty much what society expects him to be (all be it a little overenthusiastic in his approach to life).