Joe is sixteen, and shortly after his birthday, the house shook as the package containing his PIP form and accompanying documents plummeted through the letter box, seismically hitting the ground. PIP is the government’s new version of Disabled Living Allowance – Personal Independence Payments. I dreaded filling in the Disabled Living Allowance forms but until the last time I did it, I was wonderfully supported to complete them; last time, I just copied the previous form with alteration where necessary. This time I have just over two weeks to fill in fifteen new questions. It sounds easy, but it isn’t. It’s hours of sitting in front of a screen, writing endless examples of when things have gone wrong for Joe because of his autism, why he finds life a struggle, why things that a normal sixteen year old would find simple are nigh on impossible for Joe. It’s depressing; it emphasises just how hard it is for me to care for Joe, reminds me how different my life is to mothers of neurotypical children, puts into black and white how difficult Joe’s life is for him to live, it narrows perspective. I worry that I have missed vital information that will mean Joe will no longer be supported in the way he should be. Time ticks away, the form glowers at me. I write lists and dream at night of the incomplete form. I have one week left and I am only up to question five, though I seem to have written pages.
The burden of the form, makes other burdens heavier: the meeting about Joe’s future post-GCSE, that I fought to bring forward, ended up being postponed due to the weather (ironically, if I hadn’t made a fuss the meeting would have happened this week), the need to keep Joe calm with his GCSE’s approaching, the need to help Joe prepare for a practical catering exam in two weeks – he practiced yesterday for the first time and ended concluding he was ‘just going to fail’ as his bread dough resembled a granite rock rather than the fluffy risen dome in the instructions. And that is just the start; the form sets off worry after worry, until I am drowning under concern about all my children, how the current situation in the UK and the world at the moment will affect us, about the future. I search through the form – is there not one question that is positive in the whole of the document? No, of course there isn’t – realistically, that is not what the form is about.
But I am going to answer the non-existent question sixteen because, when you are a carer, you can spend so much time having to justify why you need support, why your child needs support, why you are exhausted/cynical/angry/hopeless, that you never get the chance to think about what you and the person you care for has achieved. So I am going to answer Question 16: ‘How have things moved on positively for you since you last applied for Disabled Living Allowance?’; then I will have something that I can hold on to for perspective. Things that come naturally to many people can be huge achievements for Joe – such as recognising when something was meant as a joke, letting a small inaccuracy pass in conversation to keep the household peace or being able to watch a film with the family without it causing so much anxiety that we have to skip bits. All of these things are reasons for celebration and they need room in my head as well as everything I have to write in questions one to fifteen. I hold the picture in my mind from last time we were up at the wood; our four children who had been working together to chase out the sheep and rebuild the wall that had come down, now walking together side by side, friends – joking, accepting of each other, having fun. We are still all together despite our difficulties, and that has to be something to grab hold of. As I sit down this week to tackle the next hurdle of the PIP form, that is what I have to remember.