I have spent most of yesterday and some of today trying to fill in the renewal forms for Tink’s Disability Living Allowance (DLA). This is a payment that she receives as a result of needing extra care and she’s been receiving it since she was diagnosed, at the age of three. The money allows us to buy her things that help with her condition – resources, outdoor toys and so on, and it also allows me to not have to work, meaning I’m here for her more. It needs to be re-applied for at intervals decided by the powers that be, and that time has come. There’s a worry that it won’t be renewed; I see awful stories regularly about families being refused even though it’s clear to see their child requires significant extra care to a typically developing child (and not just autistic children, but all sorts of disabilities). If I’m honest, I don’t feel totally comfortable claiming, but we’re entitled to claim for her and the money does benefit Tink and, therefore, all of us.
The forms are notoriously hard. Not just because they are around 40 pages long (!) but because it’s so important to write down all the negatives of your child’s disability. Usually, we try to remain so positive; yes, it can be hard and there are bad days, but we try to look on the bright side and find the silver lining. But, with these forms, question after question asks for the difficulties your child faces, the problems they have and the ways in which they are so very different from ‘normal’ children of the same age.
Can they walk, and if so, how far and how long does it take them? Do they go to bed ok? Do they stay asleep? Do they need help using the toilet, washing and dressing? Do they need help eating and drinking, taking medicines or having therapy? Can they see and hear ok? Do they have difficulty speaking and communicating? Can they keep themselves safe? Do they need help with their development or encouragement, prompting or physical help at school? What about hobbies and activities? Can they do these without help or do they need assistance? These are just some of the main questions – each is then broken down further to gather more specific information and then there are boxes to fill in with even more evidence if you need.
It’s mentally and emotionally draining to sit and do this. It takes some people weeks to fill in the forms as it’s just too much. I prefer to get it done and out of the way, so I have ploughed on, but now I’m spent. I didn’t cry this time though, unlike the first time I applied. No, this time, even though she has made absolutely no progress in development in many areas over the last 20 months or so, and I wrote so much more this time, I tried to keep in the back of my mind just how much she has come on in some areas.
Nobody wants to sit for prolonged periods thinking about all the things your child cannot do, but really should be able to at their age. Nobody wants to dwell on the significant differences between your child and their peers. Nobody wants to fill it in on a form and read and re-read it to make sure nothing has been forgotten, that every little issue has been accounted for. But that’s what we do, we parents of children with extra needs, in order to prove that our children require extra care, supervision and general ‘stuff’ than typically developing children.
And now it’s filled in, and I’ve checked and double-checked it’s all correct and I haven’t missed a question out or not ticked a box, I will pay a fortune to print it and send it recorded delivery, because I need to know it gets to where it’s going safely. And then I’ll sit and wait for the decision, and hope that it’s positive and that I won’t have to do this again for at least a couple of years, and, preferably, longer. I want to get back to thinking positively, about all the things Tink can do and the progress she has made.