Aspergers/ASD support thread

Snaggles

Hiya, thanks for the replies, I'm feeling a lot less overwhemed today, and ready to start tackling it all again.

I've just downloaded the SEN code of practice, and when the kids are in bed, I will read through it - I've had a quick glance and it seems to be quite easy to understand (I was a bit worried it would be very wordy and unclear ).

Just to answer a few questions:

Ryan has various problems at school mostly seem to revolve around his inability to contain his anger or frustration, and his inability to settle down and work with the rest of the class.

Some of the things they say are he wont (can't?) get on with his work (he sometimes just completely 'zones out' and does nothing at all), he interrupts, he shouts out, he's incredibly loud, he doesn't know when to stop talking, he can't focus, but sometimes over-focusses to the point where he wont listen to anyone, refuses to stop what he is doing when it's time to do something else, and gets angry and sometimes violent when he is stopped from doing something he wants to do, he plays 'differently' to his peers (he will play, but only if he makes the rules, and everyone else plays exactly how he is expecting them to), he disrupts the class, he doesn't like changes to routines, he gets very cross when others break the rules, so he's often accused of 'telling tales', and has even gone so far as to injure another child when they were breaking a rule about playing with sticks (he snatched the stick off them and hurt their hand). I've probably missed lots of things but I've probably bored you to sleep by now anyway....lol.

And yes, his behaviour can be completely different for different people. He responds best when people sort of join him in his own little world and gradually draw him out of it, but if anyone gets frustrated or angry with him, he just digs his heels in more and more.

I hope it didn't sound as if I was criticising his school - in general they are being quite supportive, and they do seem to care about him. It's just a bit frustrating because I think they are trying to second guess his diagnosis, and are tailoring their reports towards their own personal opinion of what's going on with him. I know I'm guilty of second guessing the diagnosis too, but I've never mentioned Aspergers to anyone during any of his appointment, it has always been them that have mentioned it as a possibility, and it was only when I started reading up on it that I became convinced that it describes Ryan perfectly.

Right, sorry for the essay (hmmmm, maybe I should write a book ), I'm now going to start Googling the parent partnership.....it's amazing the new things I'm learning about, I'd never heard of them before!

quietheart

Glad you're feeling ok today Snaggles. Parent Partnership will probably arrange to come out and see you to get a picture of what is going on. Best of all they're on your side, they know what your LEA are good at, what their weaknesses are etc and what help you should be receiving.
Let us know how you get on.

Ellidee

:grouphug: Hiya hon just catching up and wanted to send you a hug (dodgy)because you are having so much angst over Ryans' diagnosis. Don't know anything about his problem to give any advice but I think he is so lucky to have you for his Mum. Take care XX

blue_monkey_2

Snaggles wrote: »

Ryan has various problems at school mostly seem to revolve around his inability to contain his anger or frustration, and his inability to settle down and work with the rest of the class.

Some of the things they say are he wont (can't?) get on with his work (he sometimes just completely 'zones out' and does nothing at all), he interrupts, he shouts out, he's incredibly loud, he doesn't know when to stop talking, he can't focus, but sometimes over-focusses to the point where he wont listen to anyone, refuses to stop what he is doing when it's time to do something else, and gets angry and sometimes violent when he is stopped from doing something he wants to do, he plays 'differently' to his peers (he will play, but only if he makes the rules, and everyone else plays exactly how he is expecting them to), he disrupts the class, he doesn't like changes to routines, he gets very cross when others break the rules, so he's often accused of 'telling tales', and has even gone so far as to injure another child when they were breaking a rule about playing with sticks (he snatched the stick off them and hurt their hand). I've probably missed lots of things but I've probably bored you to sleep by now anyway....lol.

And yes, his behaviour can be completely different for different people. He responds best when people sort of join him in his own little world and gradually draw him out of it, but if anyone gets frustrated or angry with him, he just digs his heels in more and more.

Hi everyone,

I've been lurking around this thread for ages, I nearly posted the other day but I was not sure whether to but after reading the bit above I thought I would.

Funny that the paragraph you typed could have been describing my own son. He is 3 and also called Ryan (I got told when we named him that all Ryas were trouble, LOL) and even though he only goes to morning nursery tied to the school they have assisgned him his own Teaching Assistant because of how he is and because he has bitten or hit so many of the children. I think the final straw for them was when he hit or bit 3 children on one day as they were not playing the way he wanted them to. Going down to nursery each day was something I dreaded and I used to spend the whole 2 1/2 hours in 'limbo' of not daring to go anywhere or do anything incase I got called in to go get him. In fact, LOL, this morning was the first morning I've ever been out while he was at school and he started in September!!

He does responds well to the TA and has a good morning but when she is not there (they have been off on training courses over the last month or so) he is a complete pain in the !!! and tell me this when I go to get him. So, from this they have concluded that it is because he likes the attention. However, I don't think this would explain his behaviour at home which is very erratic and we don;t really do anything or go anywhere because of it. Just an example, in the summer we went to the park with some other children. ryan did not want to come home so I started walking back - I looked around and he had disappeared off in the other direction back towards the park. I had to run the length of the playing field to get him and he threwself down as a sdead weight and refused to budge and then he had a major full on fit because I picked him up and carried him home. He is very full on, likes to clamour on you and cannot understand that he might have hurt you and so continues time and time again - my legs are literally covered in bruises (which he has started counting, cheeky so & so). I guess it is hard to explain. I try to explain to people and I just think that they think 'he's a booy, that is what they do' and then i feel bad for thinking he has to have a label (or an excuse, maybe) and it starts a whole vicious circle again. For me though it is more I want to know the best way of dealing with him. I have sure realised that shouting and threatening him with the take away of things has no effect whatsoever. I've smacked him when he has been very naughty and again, it has no effect whatsoever. He runs off into the road, goes off and talks to strangers, I know he is young but my daughter understands and there is a year between them. It is hard to know whether it is just because of his age or if it is something else. As I said to everyone, I'd rather rule out what it could be rather than trying to struggle on with life as it is!! either way I'll learn how to deal with him and I don't think that 'label' is going to help me sleep at night, go shopping or do things that we otherwise wouldn't, it is just that I would be able to have more of an understanding of things instead of thinking is it this, that or the other.

The doctor has referred him to CAMHS but they have come back and said they won't see him as he is not 4 - he is 4 in Feb!! They could have given us an appointment for then but the doctor has now referred him to the Community Peadiatrician - which is what I wanted in the first place to be honest. And so it now starts for us. I do think the school are going to say it is attention - does that means that he just likes to have the one on one attention or whether they think it is ADHD, I am not sure, but it is still very early days for us. That being said, after spending an hour in the HV office yesterday I think she came to the conclusion that he needed to be seen - so that was one bonus.

Anyway, I've wasted enough of everyone's time, I think it's great that we can all help and support each other here and tell each other what we are going through. Does anyone know if there are support groups that meet local to them and help each other rather than people thinking we cannot control our children (LOL) and where I can find them. I think that would be a great help to me, just other parents help and advice would go a long way to be able to get me through something simple, such as going to dinner when Ryan does not demand we should or should not. Last time we tried to go to the Harvester he 'was not hungry' and refused to sit at the table and spent the entire time running around, disrupting everyone else and running through the bar bit to sit under the table the other side of the restuarant to where we was sitting. At that point we got our stuff, made our excuses and left and my daughter was still needing food so we resorted to crappy Burger King. I don't want everyone else to be the one that suffers as he 'cannot get his own way' and therefore makes the whole time unbearable to everyone else within a 100 yeard radius. Short of strapping him into a highchair (it was easy in the early days, right?) what else can you do if he is refusing to sit down at the table and refusing to eat and is screaming the place down? What does everyone else do in situations like this? Do I have to put up with the Burger King/McDonalds drive thru forever??

me_and_me_monkeys

Hi

Just wanted to say (((hugs))) to all those with ASD children - diagnosed or just suspected.

As for putting up with drive through - I have spent many many family restaurant meals in a toilet cubicle with my oldest ASD child - while the rest of the family ate, then someone would come and get us and my husband would take over (if needed) while I ate. Took 6 months but now he can sit quietly as long as he is occupied - sometimes I still don't get to eat as I am watching 2 children with ASD now (as well as my youngest monkey) but the view is better than the toilet! Hang in there!!!!

blue_monkey_2

Thanks monkeys, not just me then. I get really envious of the people sitting with their kids all nice and eating dinner and drawing on those little booklets while mine is running around throwing cutlery and getting up and down and sitting under the table while having a strop about something or another. Don't you find that everyone just looks at you in digust though? Especially when you have been waiting ages for a table, unless we are desperate we eat and run these days. Pizza hut buffet is good as there is no waiting so we can get in and out ASAP!!

Strapped

We go to a pub restaurant which has an indoor ball pond "cage" to throw them in - best invention ever! (They also have an outdoor play area for the summer but it's too easy to run off from...)

Snaggles

Hi guys - I'm going to catch up with the recent posts in a second, but I hope no-one minds, I've changed the title of the thread. I feel like it's become (for me anyway) more than just a quick question about birth notes - I have found some real support and fantastic advice here, and I'm really grateful.

Thanks everyone xxx

quietheart

good move Snaggles, I don't know how other people have stumbled across it so far!
I'm up to my eyes in other stuff at the mo but will be back to chat with everyone soon!

kit

I've just come across this thread and I think its great.
I am currently setting up an employment project for adults with Aspergers and one of our aims is to teach NT's that THEY have to change, not the people with ASD. Its refreshing to find so many people that understand all in one place!
Good luck to all of you and your children.