DLA

[RatsUnderTheDecking]

Ds(8)(ASD) was awarded high rate DLA with low rate mobility 3 months ago. This is to be reviewed in 2 years.
This has meant that we've been able to put all sorts of things into place for him, which has been brilliant for him

Ds's sleeping was always a real issue, too anxious to get to sleep, and frequent nightmares and sleep waking (up and angry but not "with it"). Since getting a weighted blanket, he is still tricky to settle, but the wakings have all but stopped (fingers crossed!)

We have got him a trampoline (we have very understanding neighbors lol) which he loves and spends hours on.

Right now, Dh and I feel uneasy about DLA as his behaviour is so improved. We know this is down to no school, being at home and us being able to indulge him and let him decide what we are (or mostly aren't) doing, so he has no pressure on him.

I know that high rate was awarded because of the night wakings, which aren't happening any more because of the blanket. Should I be contacting DLA about this to re-review?

I told tax credits about DLA, as it was a change to our circumstances, and tbh I thought tax credits would go down because of this, but they've gone up.
Dh and I feel like complete fraudsters, as we've managed everything so far, but without the extras that have made such a big difference.
I am a sahm, as ds doesn't cope well in school and I am often called in - working proved to be impossible. So the extra money feels like a life saver, but we feel so guilty about it.

[ouryve]

If oyu no longer got the DLA and could no longer afford to implement the improvements in his environment and routine, do you think the changes in his behaviour would persist?

Trampolines wear out. Blankets get puked on. The novelty of a calming activity wears off etc etc.

If there had been a deterioration in his behaviour, they would expect you to wait for 3 (or maybe 6 - need to double check) months before you can ask for a higher rate, to demonstrate that it's persistent. I think you need to hold your horses and prove that the improvement in his sleep has been persistent before informing them that you no longer need higher rate care because he no longer has night time care needs. Is he jsut off for the school holidays? If that is the case, you at least need to see what happens come September.

As for his day time behaviour - consider all the hours that you're putting him to keep his behaviour on an even keel. It will still be far more than that required for a NT child of the same age.

[LadySybilLikesCake]

IME, once you find one thing has eased, something else pops up out of the woodwork. I wouldn't let them know just yet.

[Ineedmorepatience]

It took me ages to apply for DLA, my Dd3 has Asd, sensory processing disorder, hypermobility etc etc.

I finally filled the form in when some children we knew started secondary school and they were only a few weeks older than her [she is a September baby]. It suddenly made me realise how independent they were and how reliant she is on us.

What you wrote on the form was true when you wrote it and you should always write the worst case scenario.

Who is to say that he wont start waking in the night again when he goes back to school.

I wouldn't rush into anything until they go back to school.

We have also been able to provide Dd3 with lots of things she wouldn't have been able to have including a weighted blanket and a holiday with her Scout group but at the same time, she cannot go to the shops with her friends or walk to school independently.

Good luck whatever you decide to do

[RatsUnderTheDecking]

Without it, I think we'd be back to square one with his behaviour.

We also have a 5 year old dd. ds needs far more input than she does.

He can be fairly independent in our village, but definitely not in unfamiliar places.

Will hold off and see how things go into the new term.
Many thanks x