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Autism - Support, what a joke ?? - Carers UK Forum

Autism - Support, what a joke ??

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Came across this link on Twitter earlier, posted it on FB too as I am sure there are many parents going through similar circumstances just now.
This morning the kids have broke yet another thing as they try to cope with the summer school holidays. Why aren’t they coping well they have the additional problem of being autistic, they strive on routine. As you all know in the UK its the 6 weeks school summer holidays what a joke that is. HOLIDAY – yes pull the other one its blooming hard work .

What makes me laugh at all this, people know that autistic children thrive on routine so why is there no support for the thousands of families like us. Why is there no help or someone say as soon as school finishes well actually we have this group that the child could attend but they don’t. Some how we have to struggle through each day being a constant battle, we have to endure meltdowns, tantrums, shouting and screaming. I myself suffer from unstable blood pressure and have been on tablets for nearly 2 years to help keep it under control, these last few days and especially today my blood pressure has spiked, I know because of the way I feel . What has caused this well basically my children and their behaviour.
read the post in full here
http://www.savette.com/blog/support-what-a-joke/
Its so true.

About 3 years ago i put Zac in the local play scheme, i asked for additional help for him whilst he was there but as he is able body it was turned down.
Thought it might still be good for him to attend ..What a disaster.
He was all over the place, they kept punishing him as he was a bit of a whirlwind, he was given a black mark against his name for every little thing he did "wrong"..this freaked him out even more.
I put in a complained and pulled him out after a few days..wasn't worth the stress..they since apologise and asked for him to go back..no way.

But it is hard to find things to do..we do still stick to a routine ie, meal times, bath times, walk in the park in the afternoon..but unstructured times are really hard.Plus there is only me to entertain him.

Will read the link now x
Thanks for posting the link R.
So true and gets even harder at adulthood - no services or support whatsoever. No funding/decision on funding if you do get a place ....

I found it easier to give S enough structure and activity when he was younger, now he no longer goes to bed before me ... I have longer hours to fill and when he is anxious he is more challenging as he is now a lot bigger.

Shall now read the link.

Melly1

PS Tracey when S was younger he would never have coped with the mainstream or special school playschemes (M/S - no asd understanding; same sadly of the special school ones - total freedom and no structure.) There is now an ASD specific scheme where we live - but of course after this summer he will be too old. He does well on this scheme. He has one week on it this summer.