Aspergers/ASD support thread

tilly's_mum

Hi

My daughter is autistic and wouldn't walk anywhere too - my local lions group bought her a maclaren major - a really good buggy - it may be worth asking a charity.

If you are on a low income the family fund may be able to help - they also help with washing machines, tumble dryer and holidays for the family of disabled children.

Your local carers centre may be able to advise you on sensory toy libraries or light rooms - I live near Preston and we have a fanastic huge light room called space - my daughter loves it and its well padded so she can't hurt herself.

Cerebra www.cerebra.org.uk does have a sensory toy library - I don't know how long the waiting list is - they also have a book library, give out grants for equipment and send out regular newsletters full of useful info.

penguin83

Hi Kev - my son has recently been diagnosed too - he is 2 yrs and 10 months - its nice to hear from someone else with a toddler as many people seem to have older kids.

Sorry cant help with your query but try posting on this forum (asd-forum) - they have been an invaluble form of support to me x x

Savvy_Sue

justontime wrote: »

As a fairly ordinary mum (I think) I struggle to understand why he does things and in my efforts to help him I probably make things worse. If I ask him how his day was he accuses me of subjecting him to 20 questions, and if I ask what subjects he has at school today (to check that he has the right books with him)he thinks I am interrogating him.

Now either ALL my sons have AS, or that's a fairly typical teenager thing. It really does get difficult when AS and normal teenage hormones combine ...

Would he cope better with "Was your day OK?" And is it worth having a copy of his timetable on the fridge or somewhere so that he or you can check the night before that he has what he needs?

As for your 'phased plan' to get him into town, that sounds exactly what I did with ALL of mine, from about the age of 13. Is it really that different from what happened with your daughters?

I also used to make excuses to ferry them sometimes (still do, as it happens). "Oh, I was wanting to go into town today, I'll give you a lift, shall I?"

I do feel for you with your son being beaten up: we had several problems while DS1 was doing a paper round. We had to change the area he was delivering in. Although I'm not sure his AS had anything to do with it, because we'd moved here a few years previously he wasn't 'known' to these boys (notorious ones!) and they just didn't like him on their 'turf'. And then the same gaggle 'got' DS2 several years later.

As for extra time in exams, I had no idea it was a possibility, but because he seemed in danger of failing his GCSE English his teacher asked if he had a problem. He said he had AS, and it all went from there. It takes him longer to work out what the examiner wants to know: really, the examiner should KNOW the answer, shouldn't they, so why does he have to tell them? It would be worth asking the SENCO about it.

Also I used to work in a University, as did DH, and we carried on moving in student circles for quite a while. You really do get some very odd sorts, and yet they get there, and cope, and some do very well indeed!

justontime

Savvy_Sue wrote: »

Would he cope better with "Was your day OK?" And is it worth having a copy of his timetable on the fridge or somewhere so that he or you can check the night before that he has what he needs?

Thanks for the advice. That sounds so simple doesn't it. I have his timetable etc and we have special drawers in the hall to keep his school books and other school essentials. I do my best to check, but he is a 'bag person' and touching his rucksack provokes hysteria. He goes everywhere with a rucksack. To him interfering with his rucksack is as bad as interfering with him. Any conversation that is not initiated by him is intrusive, so asking him if he has the correct books or how his day was just makes him stressed or angry. When he does talk he can go on for hours (without seeming to breathe) but only on his terms.

As far as the going to tow thing is concerned, I think I just let it get to me tonight, you know when you convince yourself that you are a useless parent and that you are probably the cause of your child's problems. I know those thoughts are nonsense, but sometimes you just can't help it.

The phased plan is much the same as the arrangements I had with his older sisters when they started going to town alone. The difference is that they were fairly sensible, had good judgement and didn't have AS. My son has poor judgement especially when under pressure, and he isn't good at keeping himself safe. I am going to press on with the phased plan if I can get him to co-operate.

PasturesNew

justontime wrote: »

... touching his rucksack provokes hysteria. He goes everywhere with a rucksack. To him interfering with his rucksack is as bad as interfering with him...

Privacy issues. I am like that. I don't like anybody touching anything I own, or even looking at it in some instances.

e.g. if I were in my room and a parent opened the door to tell me something and I could see them looking around my room I'd feel invaded.

It's all part of the 'being watched' thing.

shazrobo

am expecting trouble anytime soon lol.
school just rang to say they are flooded and are sending all the kids home, so daniel is not going to be happy, he loves school, and the routine, as he is a resident there mon til fri too, means he going to be staying at home for a night or two extra too, so no rest for poor mum lol, the hardest thing is trying to keep him entertained and out of mischief, this weather dosen't help, otherwise i would take him out. any suggestions for keeping a 12 year old entertained that dosent involve tv, computer, or electronic games, as i'm sure they are not good for his eyes over prolonged use

NoahsPennilessMummy

Hi kev

My son was diagnosed early like yours and he is now 4 and a half and still lies on the floor and refuses to walk at many times...also has sensory issues in supermarkets and shops so needs his buggy then.
He has a maclaren elite like the one you saw in mothercare and it is great, he finds it comfortable.....family fund would help bt can sometimes take a few months to sort ...maybe you could hire one in the meantime with his DLA money?
I bought one before i knew about the family fund :rolleyes:

With regard to the bus issue i would see about getting one of the passes someone else suggested as it gives you a legitimate reason for not folding buggy......ie he is disabled not just a child in ordinary buggy.

hth

samf1971

Hi Kev, I'm in pretty much the same situation. My DS is 2 years and 2 months! he's just going through the diagnosis procedures now and I've had him in an Urban Detour pushchair, but he's already 3kgs overweight for it!

I've looked at Mountain buggies - very expensive but take more weight up to about 35kgs (My DS is 16.5kgs) so would do for a while, they can be a bit cheaper on ebay - they also do a special needs version of the mountain buggy terrain which has a higher seat and longer footrests to accomodate.

I've looked at the major elite too but still not made my mind up! lol - DS is a bouncer and bounces like mad in his pushchair so not sure how the major elite would cope!

I don't think we'd be entitled to the bus thing as it mentions that the person holding the pass would have to have high rate DLA and as our boy is under 3 he can't be awarded high rate - and can't have mobility until he's at least 5.

shazrobo - my Hubby went through wakefield earlier today (just gone back there actually) and he said the canal/river was really up and there were lots of men in hi-visibility vests lurking with sandbags!

Nikki

PasturesNew wrote: »

The friend I have who has ADHD seems to think talking of/threatening to punch everybody for everything is a valid solution.

DS1(12) talks like this and he has AS, however he only puts this into practise with his brother and sister. If he has been hit by someone else, he is more likely to come home and have a meltdown and a rant about how he is going beat the crap out of them when he sees them next - it never happens.

shazrobo

been a long day both sons ended up being sent home, been a long day, and i'm ready for bed lol. took them both to the supermarket, bad mistake, but i was leaving it til today, thinkin they would be at school. you should have seen the looks on other peoples faces when both of them started first joshua had a tantrum over pushing trolley, so i gave trolley to him, and daniel started a tantrum, laid on floor kicking and screaming, they are both 12 and big lads for their ages, so embarrasing.
good thing that came out of it tho, there was a stand in supermarket for RAC and as i been thinking of joinin, had a look, and talked to the man, who gave them a puzzle, yay, keep em quiet while we talked, and i got half price cover as i told him, they were disabled, result