Aspergers/ASD support thread

tillycondy

Hello I am new and dont know how to start new post or thread.. unless this is one? I am not stupid (honest!) Just very new to forums and pc!
If this is in wrong place Sorry! can anyone tell me how to start a new thread..
I am a single mum to ds who has recently been diagnosed with autism. Big shock and finding it all a bit scary at times!

Zara33

tillycondy wrote: »

Hello I am new and dont know how to start new post or thread.. unless this is one? I am not stupid (honest!) Just very new to forums and pc!
If this is in wrong place Sorry! can anyone tell me how to start a new thread..
I am a single mum to ds who has recently been diagnosed with autism. Big shock and finding it all a bit scary at times!

tilly i personally would just stay put here, loads of helpful info from parents going through the same thing.

trubster

Hi guys,

I am sorry I havent been online recently, The whole thing is driving me mad. I finally sorted out a major buggy to be issued by the NHS for my son, and we are due for the final stage of diagnosis, the only problem we are having is that the hospital pay for taxis to and from our sons play sessions but now he has started physiotherapy and they refuse to provide them, so we have to take 2 children on 2 busses for over an hour to get there and they want us there as early as 9am on one appointment

We are getting an appointment on monday where everyone who has been involved with him is going to meet us and discuss what is wrong, they have not sounded too optimistic about giving any clues about what they think.

The problems we are having with him is he constantly throws tantrums when in shops and on busses, also because he is not verbal yet (at 2 1/2 years) we can not reassure him or understand him. Its heartbreaking nearly.

Is it normal that autistic children get up through the night and jump on the bed (I couldn't believe how much energy he has) but he can jump on the bed for about half an hour watching tv(yes, he turns it on and puts a dvd on... lol)

Finally, I need to know how we go about getting him "Statemented" as we calledup sheffield CC and they said he can not be statemented until he goes to a normal school which i dont believe for a second.

Thanks for advice

Kev

blue_monkey_2

Hi all,

Ah Kev, yes, I think so as DS is up very early too. It is exhausting in all honesty and this is the bit I cannot cope with. DD will get up and just lie on the bed but Ryan will be leaping and jumping around all over the bed and he does not stop until bedtime. He cannot even sit to eat a meal, he is all over the place, popping back to the table for a mouthful of this and that. Somethings are not worth a fight over!!

Have you applied for DLA? That should help with the travelling costs if he is awarded that. I know what you mean about supermarkets, DS is 4 and hates the supermarket and you have to just ignore the looks you get to be honest. Have you thought of the cards (people will give you the proper name) for your son so he can understand where you are going. He can then also have a card so he can point out how he is feeling. Have a look on eBay and you'll get some more ideas. I have to confess to being a home shopping convert - I go to the supermarket only if essential these days and the charge for delivery is worth it for not having the hassle of the shops.

Hi Tilly,

Welcome to the thread and please do stay here. Please ask for any advice you can and anything you are not sure about. DS has jus recently been diagnosed but we can all offer as much support and advice as we can to each other. If you press the User CP link near the top of the page then it'll showyou any new messages that have been added and saves you having to look for it. Please feel free to ask any questions or let off some steam - you'll find it really helps.

blue_monkey_2

Not been around much because of the holidays, but wanted to hare with you. We got a new Tvv today as our other one had it, and as I am home all day I NEED the TV, LOL!! Anyhow, we got the old TV off the stand and put the new one on ad Ryan just freaked. He was still freaking at bedtime 7 hours later as he did not want a different TV and he even punched the TV 6 times before bed. Ooer!! Looking forward to moving house - NOT!! It is going to be huge, I thought it was going to be easy - but now I am not so sure if a TV caused this reaction.

Hope everyone else is OK. Not much else to report, a few appointments coming up after the Easter hols, getting an eviction date on Wednesday, it'll be nice to have an end in sight at long last.

blue_monkey_2

Oh Kev, I could well be wrong but if he is at Nursery then they will be able to get him statemented as it is something that the LEA does. I might be wrong but I gathered that this is what happend, there is another mum on this thread who has a little boy of the same age who is statemented for Nursery so someone will advise better than I.

Can I ask what you need the statement for as it is usually for schooling and so that children get the help they need on a 1:1 basis and at a certain school. If your son is not at school then he won't need it but if you feel that you need it so you can apply for travelling money then I would go down the DLA route and see if you can get funding this way through the Mobility Rate.

HTH

trubster

blue_monkey wrote: »

Hi all,

Ah Kev, yes, I think so as DS is up very early too. It is exhausting in all honesty and this is the bit I cannot cope with. DD will get up and just lie on the bed but Ryan will be leaping and jumping around all over the bed and he does not stop until bedtime. He cannot even sit to eat a meal, he is all over the place, popping back to the table for a mouthful of this and that. Somethings are not worth a fight over!!

Have you applied for DLA? That should help with the travelling costs if he is awarded that. I know what you mean about supermarkets, DS is 4 and hates the supermarket and you have to just ignore the looks you get to be honest. Have you thought of the cards (people will give you the proper name) for your son so he can understand where you are going. He can then also have a card so he can point out how he is feeling. Have a look on eBay and you'll get some more ideas. I have to confess to being a home shopping convert - I go to the supermarket only if essential these days and the charge for delivery is worth it for not having the hassle of the shops.

I tend to do that alot too, I shop at tesco and get 1000 clubcard points on every shop... lol, makes it worth while as it is £40 towards a holiday

I have applied for DLA and he has been awarded the higher care rate but no mobility as he is 2 1/2.

Can you also tell me what you mean when you say DD and DS... lol, can I have an abbreviation dictionary, lol

Also, the cards are a good idea but he is not at that stage either, the nursery tried teaching him maccaton but he was not interested.

Thanks

Kevin

penguin83

Hey everyone hows it going? Got a letter from the DLA this morning to say that they are still processing our claim and we will hear soon. We applied in January. My son is awaiting a statement for nursery and he is only just 3 and he is due another child development appointment with the paed in April so everything moving along. How is everyone else doing x x

Savvy_Sue

trubster wrote: »

Is it normal that autistic children get up through the night and jump on the bed (I couldn't believe how much energy he has) but he can jump on the bed for about half an hour watching tv(yes, he turns it on and puts a dvd on... lol)

I would hesitate to describe anything as 'normal' in the world of autism, but if it's any comfort, my friend has got through several beds because of her child's bouncing. She found a trampoline a good investment ...

One question, is the TV in his bedroom? Only my friend found it helps to have the bedroom as dark as possible, and no distractions. She was in a two bedroomed house but split the children's room so her other child wasn't disturbed, and she kept the lightswitch OUTSIDE! Blackout curtains too. It's not a complete solution, but it helped.

Also, if I say that the pictures are far simpler than Makaton, I might be wrong, but they don't require a response from the child, if that makes sense. Even if the child doesn't respond, you can work through the a series of pictures to show what's happening today. blue monkey, I don't know if they'd help your son when it's time for the move: he MAY surprise you just because it's a big change rather than a small one. But I don't know how far in advance you'd need to start with them. Maybe even now it's not too late for the TV: picture of him happy with TV, picture of him sad with broken TV, picture of new TV and him happy. Has the old TV gone or can he be left to see that it is broken?

My friend has help to make the pictures she needs, btw, don't know if anyone else does, and I don't know if it's 'official' or a friend who helps her out.

Carrera74

Things have been a little hectic here so not had chance to vent on here.

DS has been permanently excluded and he has got a place back at the local short stay school which he was happy about (wasn't at first but we visited last week and you could see the relief in him!).

The Head there is absolutely fantastic. Such a warm caring person. She oozes positive karma she really does. They are going to wait until he settles then get onto working out where will be best for him for high school come September. I feel like a weight has been lifted as I'm sure DS does too.

Hope everyone is okay and not having too many dramas at the moment!