Aspergers/ASD support thread

Js_Other_Half

It sounds as if they really haven't grasped some aspects of his ASD. I really don't know what I would suggest - does he want to go to the play and the party?

Js_Other_Half

http://www.direct.gov.uk/en/Parents/Schoolslearninganddevelopment/SchoolLife/DG_10013990 gives details on free school transport.

I would also say applying for any benefit you are entitled to seems reasonable to me. I know DLA forms can be a hassle, but even so, low rate mobility is currently £17.10 per week. That would certainly go a long way towards fuel etc if you need to do a school run in the future.
It will not affect any other benefits you may be in receipt of.

http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925

shazrobo

hi all, my sons are 12 now, and only last year did i claim DLA, i would advice anybody who thinks they may qualify to get the forms asap. the money makes an enormous difference to the quality of life my kids receive.
ie can afford to run a car now, which helps tremendously, ever tried public transport, with two then 11 year olds throwing tantrums, it isnt easy i can tell you.
also if you claim DLA you can sometimes get discounted entry into some places, eg flamingo land.
blue_monkey, i would probably tell school that he is ill tommorrow, so he dosent have to miss out on the party, dont lie as a rule, but sometimes small ones make life easier.
if your child has a statement you could probably apply to the local authority for transport to school, both my boys attend schools out of local area and get transport
shaz x

blue_monkey_2

Js_Other_Half wrote: »

It sounds as if they really haven't grasped some aspects of his ASD. I really don't know what I would suggest - does he want to go to the play and the party?

I am struggling to understand the school today and what they actually want from me or the point of having the TA. They have giving him this classroom assistant - who has apparently had training to deal with him, he is on an IEP (Individual Learning Plan) with bullet points in it about how his behaviour has to change. Now, his teacher has started saying it is all about him wanting attention and that he is just attention seeking - yet the observations notes she has given me for the doctor and the stuff that is on the IEP is nothing to do with attention seeking so I am at a loss now (no creative play, throws tantrums if other children want to play with him, no eye contact when she speak to him, etc...). There are issues we deal with at home, the doctor and the HV certainly seem to think he has a problem say he is attention seeking because he likes being in adult company (another trait of ASD I beleive). So I don't know. I am going to push all of this stuff aside until we have been to see the Paediatrician and that should be in a few weeks time, I guess what they say will have some credibility and will help us move forward. It seems to me that they want to 'prove' to themselves that this is just an 'episode' or that he is a 'naughty child' and that they can snap him out of it or cure him completely and when he does well he does really well and they love him to bits but when he has a bad day it seems like, actually, he really is too much trouble and they get the !!! with him and me. The thing I don't get is that why pull me in and tell me he has done this, that and the other? I don't understand what they want me to say or do, surely the point of him having the TA is to help him through days like this and not to pile it on me when I get him and make me feel bad for having a child that will not do what they want when he wants (like a puppet!!!).

He has started doing odd things lately, like if need to ask him not to do something or if you want to ask him something he opens his mouth really wide while looking at you. It sounds stupid written down here - but why would he do that?

As for the play/party thing - I am not sure. i asked him after you wrote it here and I think he understood but an hour later I asked him and he didn;t have a clue about the punishment if he was not good in the play. I don't think he wants to do it. He has been a different boy this afternoon, not naughty but deaf to anything and anyone when they ask him something, his cheeks were blazing when he went to bed tonight, he refused to get his pyjamas on, refused to get into bed, refused to eat his dinner - I just feel that it is all related as we have not had a day this bad for a long time. I am still torn though as to what to do for the best. I do think I might go to the school and tell them I am not sending him as I have spoken to him and he has no understanding of being punished with the loss of the party and he wants to go to the party and in turn he has just been a nightmare - all for the sake of 20 minutes dressed as a snowflake for heavens sake!! One minute they are saying it is fine because his TA is sitting next to him and can take him out if he starts acting up, the next it is that you will sit there and do as you are supposed to or else there is no party. No wonder he is stressed over it, I think I would be let alone him!!

I bet you wish you had never started this but it is great to have somewhere to come to let off steam and to get another opinion as I don't have anyone else to speak to really. Sorry if I've been going on today - it's been a bad day and now I have written this I feel even more frustrated and anger over what is going on. Don't feel the need to reply, it has been great to get this muddle out of my head tonight - I think once it is written down it is less to think about - does that sound strange, sorry if so.

PS. Another thing that crossed my mind.... Apprently they would get funding for his TA, the lady who does M/T would be paid as someone I know does know her and should could anot afford to be a volunteer. however, the lady on W/T/F is a parent/govenor and I wonder if she volunteers (don't get me wrong she is lovely with Ryan) and the school would get the funding and then would have the money for something else. It was just a thought so correct me if I am wrong on this one but it did cross my mind.

karmacookie

Hi Blue Monkey

I just wanted to say that its great that your son wants to go to the party and its a good social opportunity for him. There is no way that the school should use this as a punishment. If they do this they are depriving him of an excellent opportunity due to his disability, does this not come under the Disability Discrimination Act?

blue_monkey_2

karmacookie wrote: »

Hi Blue Monkey

I just wanted to say that its great that your son wants to go to the party and its a good social opportunity for him. There is no way that the school should use this as a punishment. If they do this they are depriving him of an excellent opportunity due to his disability, does this not come under the Disability Discrimination Act?

Thanks karma, that is what I would of thought. I hate the thought he is going to being punished for behaviour that they have been warned of is a possiblity. I still don't know what I want to do tomorrow - I am torn. He woke up tonight with a screaming fit and it took him ages to settle down from crying - maybe he is worried to and I don;t want him to have those feelings to deal with too. Tonight I decided I have to keep a diary of all of these things and how he reacts, what has happened, whather it has woke him in the night (he does this a lot!). I feel they are definately going to punish him if he is 'naughty' but I am also worried he might behave himself and then he has missed out. I guess this is just the start of all the problems.

Savvy_Sue

I hope I haven't missed all the chocolate cake? Had a busy couple of days, and didn't recognise which thread it was, although I think it's a great idea.

penguin83 wrote: »

My son is due to see a paedeatrician soon (beginning of Jan) regarding the possibility of ASD. I am ashamed to admit I knew very little about it when the health visitor first mentioned it at his assessment (she was the one who referred him).

What have you got to feel ashamed about? The only POSSIBLE reason for that would be if you've worked professionally with children. And even then, you can't be expected to know ALL there is to know about children, you learn what you need to learn.

penguin83 wrote: »

There are 2 things I especially feel bad about. The first is the feeling of guilt that I have in a way delayed getting him seen by not realising there was an explanation for his 'little ways' Even though he is only 3 (almost) I feel that I have hindered his development in some way by not getting advice sooner.

Send the guilt packing. You know now, and you're doing something about it: the only way you should feel guilt is if you KNEW there was something major wrong and you did nowt.

We got our diagnosis when DS1 was 12. And I've sometimes wondered what he'd be like if I'd had it earlier. Yes, he always had his 'little ways', he wasn't quite like other children, but as I've said before, it was never bad enough that I felt like marching into the surgery and refusing to leave until the GP told me WHAT was wrong. In fact I think he'd have a lot more 'little ways' if we'd known earlier, because I wouldn't have tried so hard to do 'normal' things with him.

And I think the schools had their suspicions right from nursery. I remember the head at nursery accosting me one day (she scared me rigid! and I don't scare easily!) and asking in a very accusing tone: "Mrs SS, do you SING with your child?" And I thought and said, "yes, I do sing a bit." (I love singing, but life was tough and I didn't have a lot to sing about at the time!) "Because he doesn't seem to want to join in with the other children." "Well, maybe he'd rather be singing his own song?"

penguin83 wrote: »

My other problem is my family. When I told my parents what the HV said they completly dismissed it out of hand, commenting that all little boys are like that, he will grow out of it etc. I'm sure that they are judt trying to make me feel better but it is having the opposite effect. Its actually making me feel more alone as I can't discuss anything about it with them. Luckily OH has been great as has my Nan. x x

Well, stick to your nan. I don't think my in-laws accept there's anything wrong with DS1, but then he's very like his Dad, and if Grandad doesn't have AS I'll eat my hat!

Bluemonkey, FWIW, unless your son WANTS to be in the play tomorrow, I wouldn't take him in. I don't know if in your situation my son would have a cold, or just have had a very disturbed night and be too tired to cope but if you take him in you're in a no-win situation.

Costumes can be a real problem. No-one's really mentioned what dressing AS children can be like - apart from pants / no pants! - but they can have very real problems with the 'wrong' clothes. DS1 didn't wear anything with buttons until he started junior school: astonishingly I accidentally got this right, and just said "This is what we wear for Big School, shall we try it on?" And he put on a polo shirt with buttons, the like of which hadn't gone over his head for YEARS!

Then we got to Secondary School, and there was a shirt, a blazer, and a tie! :eek: But "This is what we wear ..."

Out of school, when he was younger, he'd only wear jog bottoms, t-shirts, sweatshirts, completely plain, AND everything had to be the same colour. So we had red days, green days, blue days and black days. Couple of years ago I bought him some of those socks which have the days of the week on them, and he carried on wearing them on the 'right' days until they fell apart! :rotfl:Even now he only wears plain jog bottoms and sweatshirts: his t-shirts now have clever slogans, is all. Being a student suits him. Although he does have one pair of smart trousers and one plain white shirt, which he wears for work.

We also find 'the rules' are useful: even now I will sometimes have to say "I know you are not going to enjoy this, I know you are going to find it very boring, and I know you can't see the point. But you will do it for your grandparents, you will be pleasant and polite, and it will make THEM very happy."

Droned on enough. But please, ditch the guilt. You did your best before, you're doing your best now. No-one can ask more. Sometimes you get it wrong, but you're still the best mums your little ones are ever going to have - even when they're taller than you! :rotfl:

studentphil

I always do find it a bit strange that many people with kids find it shocking their kids have SPLDs as they run in families. When a woman meets the man who will later father her kids, doesn't she sort of notice that he or his brother or dad or grandad is a bit different? I accept people hide their family and maybe having a partner heals some of their hurt at being different, but still I just find it odd how no one notices the family history until kids pop alone.

Savvy_Sue

Oh don't worry, sp, I knew just how weird DH had been as a teenager / young adult, I've known him since he was 7 or so! :rotfl: But he did learn to socialise as a student.

blue_money, you need to find what works for you. Some families are very physical and fight a lot, others don't. One tip, which I offer not knowing if it will help or not, is that a friend whose eldest is quite severely autistic, found that saying "No" or "Not" invariably led to a full-blown tantrum. So she found other ways of saying things - "Please stop" was OK, but "Don't do that" was a disaster.

studentphil

Savvy_Sue wrote: »

Oh don't worry, sp, I knew just how weird DH had been as a teenager / young adult, I've known him since he was 7 or so! :rotfl: But he did learn to socialise as a student.

blue_money, you need to find what works for you. Some families are very physical and fight a lot, others don't. One tip, which I offer not knowing if it will help or not, is that a friend whose eldest is quite severely autistic, found that saying "No" or "Not" invariably led to a full-blown tantrum. So she found other ways of saying things - "Please stop" was OK, but "Don't do that" was a disaster.

So maybe love is blind and all that or some women like the novality of a different person. It has a type of logic to it as much as emotions can be governed by love.