Was that the post…?

Close up on the inside of a front door – specifically the letter box.
As we pull back an extremely thick A4 brown envelope is pushed through the letter box.

Switch back to close up on the letter as it drops onto the mat in slow-motion and we see the address for DWP on the back.

‘Oh good,’ we hear off camera, ‘The DLA renewal pack has arrived, I do enjoy filling that in’.

Said no parent of a child with additional needs. Ever.

DLA – for those of you new to this benefit (for it is a benefit) – stands for ‘Disability Living Allowance’ and is money to help with the care of a child whose disability means they need more looking after than a child of the same age who doesn’t have that disability. It’s divided into two parts – care and mobility – and those parts vary depending on how much care your child needs during the day and night compared to a neuro-typical child of the same age and how mobile they are when compared to… well, you get the idea.

This is a form/ pamphlet/ short story that has to be filled in because it is the gateway to be accepted as ‘disabled’ in the wider world. ‘Are you in receipt of DLA?’ is a much asked question on forms/ questionnaires/ waiting room tick lists where the answer more often than not has to be yes in order to proceed forward to the next stage of appointment/ funding/ equipment provision.

It is a soul-destroying form. For starters, it’s not a form, it’s an overlong pamphlet, or a short story. It runs to 70 odd pages and though it does have large type that doesn’t take away from the daunting feel of it. When I do Alex’s I have to steel myself. The process usually goes:

1) Letter arrives. I ignore it and put it on the pile of other paperwork I can’t deal with.
2) Because of its size, it remains quite dominant in the pile – even under school dinner money requests and free papers – and I know it’s there. Waiting.
3) With a little sleep behind me and feeling brave I open it. Then I remember how much I hate it and re-file in the ‘to do’ basket.
4) Eventually, with deadlines looming I attack it with vigour. I get maybe… half way through and decide I’ve been worn down enough for one day and leave it.
5) Repeat step 4 a week later. Realise I need a mound of paperwork photocopied in order to prove Just How Disabled my son is and take it all down to the library to get that done.
6) Pile everything into the envelope triumphantly, post it off and reward self with chocolate.

This routine is practised by thousands of parents of children with additional needs up and down the country.

Because. And this part is important. We are told to, and indeed we do, focus on the positives of our children every every day. Every tiny achievement, every miniscule step along the developmental curve, every – frankly – not bad day… it’s a winner. We celebrate, we feel our lives are working well.

But this form?

Every single question is about what they cannot do. Can they dress themselves? Can they feed themselves? Can they go to the toilet/ take a shower/ leave the house by themselves… And every time it is a ‘no’. The further into the form I get, the more I find myself writing ‘Alex is unable to do [insert activity] by himself. He needs full support from a 1:1 in order to fully access/ engage in it’. It makes for depressing reading. And, my favourite: ‘Can your child walk? No? Skip the next 30 questions’.

Before my eyes Alex transforms from my beautiful, giggly, jolly little boy… A boy who loves to explore his environment, study his toys, ride his bike… to: ‘Alex cannot…’, ‘Alex is unable…’, ‘Alex requires…’ He changes from someone who is growing and changing as a person to a huge burden on my time with no discernible upside for him or myself or the rest of my family. Once finished I have to really remind myself of all the truly great things about Alex and our life with him.

2015-03-08 10.23.31

This is a complicated post really because, don’t misunderstand me, I’m incredibly grateful for the end result, this is much needed revenue. I think I’ve mentioned before that we never talk about money but having a child with a disability is expensive. We wouldn’t be fund-raising otherwise. Everything costs more… from the big items – the bed, the tricycle, the car seat – down to the smaller every day items: twenty different sippy cups to find one they can actually hold; bigger car to accommodate enormous buggy and still leave room for everyone to get in; more petrol because you have to drive everywhere when you would possibly have walked – not to mention the hospital appointments… more washing going on because of more clothes ruined through play/ food/ *whisper it* poo – long past the age when you would have reasonably expected that to have ceased.

And. The elephant in the room: making up for lost income. That extended maternity leave when you realised where your life was headed, that part time job because full time doesn’t fit with a disabled child, that untaken better job/ promotion because you just can’t guarantee you’d be reliable and at least your current employer understands your situation.

I just wish there was an easier, more positive way of working this form. To not leave me – and countless other parents – feeling emotionally bruised at the end of it. To leave us putting off till the eleventh hour something that takes weeks to go through the system. And- election over – I worry that this system will change again. Probably not for the good.

Having filled the form in three times now during Alex’s busy nearly five years we’ve been awarded DLA till he’s 18. This is a very much silver-lined cloud. I am over joyed not to have to fill it in again till then but… oh, he really is *that* disabled? You don’t think that’s going to improve? Well, maybe not, not in your tickbox world he won’t but in mine… that boy has a long way to go yet.

2015-04-08 13.31.10-1
Mummy says please send wine and biscuits. And cake. Always cake.

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2 Responses to Was that the post…?

  1. Amy Johnson says:

    I always love reading your blogs because they show me a point of view I wouldn’t maybe have considered before and help, in some small way, me to understand what you deal with/go through. This post sums up totally the different ways to look at disability and in my opinion the way the form forces you to think is wrong – I love how positive your outlook is and believe, beyond a shadow of a doubt, that your attitude will help Alex reach more than any health professional every believed possible. He is very lucky to have you :)

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