Advice about DLA

[Opal93]

My son is 6 with ASD. The first time I applied for DLA he was 3 and he was turned down as all three year olds need a lot of care and supervision. So I applied again when he was five and it was successful and I got middle rate care and low mobility. For every point I made i emphasised he needs substantially more care and supervision due to his needs than typical children his age. I also included his first report from an educational psychologist advising that he attend a special needs school as he would struggle in mainstream because he is significantly behind his peers and needs a high level of assistance. The award is until 2022 so renewal is not for a while. He is doing well at school and is very happy there but still needs a very high level of care compared to peers. I can’t help feeling enormous guilt for getting dla and feel pangs every day is there a child worse than him would need it more. I think because he is in a special needs class he doesn’t stand out as much IYSWIM and I start thinking he is normal and I shouldn’t be getting as much dla. But then when he is with a neurotypical child his age or when his 3 year old brother is actually further ahead in development than him it sinks in that actually, yes he is that bad. He sometimes has little moments of improvement that would never have happened a year ago when I claimed. For example, he for the first time ever pulled his trouser down to go to the loo on his own. He still needed help pull them up but that is something he’s never done before! And then I wonder if he is improving should I tell dla. I think it’s just guilt. I think the form made me feel guilty as me and his teachers do try to be very positive and talk about where he is improving as well as his struggles but dla form is just so brutally negative! So I guess what I’m asking is, are these feelings normal? And how much improvement needs reported? He has also got harder in different ways now he’s older I.e he’s bigger and stronger so it’s harder to restrain him if he’s going to hurt himself. Is it all just considered again at time of renewal?

Your feelings are totally normal. My DS got DLA from 7 (he is now 31) and DD from a similar age, and is now 14.

I've had friends query why DD gets DLA when she is "the same" as their children, but then they talk about theirs doing perfectly normal things that 14 yos do and you have to point out that DD can't/doesn't do that.

As he grows, the differences between your 6 yo and his brother will get bigger and bigger, and more obvious. DLA is given to you in recognition of how much harder things are for your 6 yo. Just a small example, my DD started swimming as a baby & did really well until she got to the age when most other children have lessons. She was fine swimming under the water or vertically as she did at baby swimming. Trying to swim with her head above the water with her legs behind her, and moving her arms and legs in particular "strokes" was too much for her. She had years of 1:1 lessons, while all her friends had the far cheaper group sessions, and her teacher told me she couldn't co-ordinate her arms and legs and breathe at the same time. DLA paid for those lessons.

She wasn't allowed to be in her ballet recital because she would distract the other children (and I wasn't told until after I'd queued for an hour to buy a ticket ). DLA bought individual music lessons from somebody who really "got" her.

You will spend ages telling yourself he "isn't as bad as xyz", then hours in tears filling in the renewal form when you realise that actually he is "so much worse than abc"".

You really don't need to report an improvement. Your award is for a fixed time. Please be kind to yourself

You really shouldn't feel bad at all OP. Children with additional needs need so much extra care, IMO the dla (and especially careers allowance) barely scratch the surface of the additional costs involved.

Echoing what the others have said. Your award is for a fixed period. Upon renewal they will make any changes they see fit.

Ds has been on dla since the month before he turned 3. He was 7 in January.

He gets high rate care / plus mobility. Some things have improved loads over the 4 years he’s been in receipt. Whilst other things are worse than I could of imagined.

He’s still fully entitled to high rate care. His award that was renewed at age 5 is until 2026. Then I’ll renew again.

He starts special school in a fortnight and I can imagine he will be easier in some respects to the other children (he’s verbal and can communicate for starters and I know several children in his new class are non verbal) but his behaviour is atrocious at best and he needs watching constantly for his and others safety. He also has adhd along side his autism and is extremely impulsive and hyperactive.

When I first applied for dla and even when I did the renewal at 5 he was more or less non verbal / just learning to talk, he’s very verbal now. I’ve not updated dla that because just because he can now talk that doesn’t stop the thousand other difficulties we have.

He’s harder work now than he ever was when he was non verbal. In fact he was an absolute breeze when I look back to how he is now 😂

Compare him to another child of the same age who is typically developing and you’ll see that he is fully entitled.

Ds is 7 but realistically speaking he has the mind of a toddler, bless him x