I came up with a new non-sweary swear today. It was a tweak of Sylvester the cat’s “Sufferin’ succotash”. “Perseveratin’ balderdash!” hasn’t quite got the same ring to it, but saying it to myself in a lispy cartoon moggy voice possibly saved my sanity (although if anyone had overheard they would have thought otherwise).
You see, my daughter has been putting the persevere into perseveration this week. (Perseveration is the uncontrollable repetition of certain phrases and questions. It’s a common trait with Prader-Willi Syndrome. She’s done it forever, and ever, and ever, and ever, and ever, and ever...well, you get the idea).
Some of her questions and mantras have been around for a while, but what I realised today that one in particular is growing. It is having extensions added to it.
I had a little search through the posts on this blog, and discovered the earliest recorded instance of the pick of her perseverations was in April 2011, when I noted that “Have I still got lots of teeth?” was high up in that week's Top Five of her repetitive sayings. Over the months, this morphed into “Do I grind my teeth?” and later: “Do I gnash my teeth. I don’t gnash my teeth do I?”, and then later still the addendum: “This tooth is worn down more than that one, isn’t it?”
A few weeks ago, I broke my rule of not engaging with the tooth questions after five times of answering them, and told her in no uncertain terms that she didn’t need to ask them any longer as she hadn’t ground her teeth together since she was little. She demanded to know exactly how long, and I came up with an arbitrary answer, which has now been tacked on. So the perseveratin’ balderdash now goes something like this (keep in mind this is a sample of my girl having a complete conversation with herself, answering all her own questions in a slightly exasperated manner, at the same time as directing all the questions to the silently teeth-gnashing me)...“Do I gnash my teeth? I don’t, do I? No, of course you don’t. Is this tooth worn down more than that one? It is, isn’t it? No it’s not. Do I gnash my teeth? I don’t do I? No, of course not. You haven’t done it for 12 years!”
Ad. Bleedin’. Infinitum.
So I’ve started to have this thought. It’s kind of wicked. I’m going to have to think carefully about it, because it has every chance of backfiring. But I’ve realised that I probably have the power to shape the continuing growth of the Tooth Chronicles. What will the next clause be? And can I lob in something random, just to amuse myself?
I’ll report back in a few weeks. I’m thinking along the lines of: “You’re not a pterodactyl in a tutu.”
Any parent or carer of a disabled child is used to forms. But that doesn’t make them any easier.
They loom.
There’s this underlying anxiety that the next time you fill out the form, the criteria will have changed, the rulebook will have been rewritten, and your child’s difficulties will be judged differently.
And then you start to wonder how on earth you’ll manage financially if the safety net of support for the disabled is downsized, loosened, or whipped away. I tend to picture myself landing face-first in the sawdust like Burt Lancaster in Trapeze. Sadly, I do mean Burt. I look more like him than I do Gina Lollobrigida.
Over the last few years I’ve filled out a few hundred pages of Disability Living Allowance forms. It has destroyed a little piece of me every time I’ve done it. Because when it comes to spending hours poring over the minutiae of a DLA application, there’s this thing you have to do: go negative. It’s a toxic process. You flip everything onto its head. Instead of the necessary positivity you need to cope with the challenges of disability, instead of the joy you take in every achievement, however minor, you have to wallow in what your child can’t do.
My daughter turned 16 in October. So I knew there was a formidable form on the way. As someone with a disability who was previously claiming DLA, her 16th birthday meant she would now be ‘switched’ to something called the Personal Independence Payment (PIP).
We’d already had an initial ID meeting, where a very nice woman visited us to determine that we were indeed who we said we were, and that my daughter, although now 16, was not capable of dealing with her own claim or managing her own finances.* [*Two things: 1) They’ve been paying DLA for a good number of years now, so you would have thought the ID part would have been a given. 2) I think the sight of my teenager reading a Topsy and Tim book may have provided some clues for our visitor].
We were told to expect a PIP form once my girl’s birthday had passed. I’ve been preparing a little bit by downloading a 46-page guidance document from Disability Rights UK, because, hey, I know how to spend a fun evening or two.
The big brown envelope hit the mat this week. My heart sank, but I tried to convince myself I was geared up and ready to go. I'd sharpened my pencil. I was prepped for the PIP.
The covering letter was headed Personal Independence Payment. It blah blahed on a bit about me acting on my daughter’s behalf, and I jumped to the form itself, to see if it tallied with the guidance notes and scoring system I’d been poring over.
It didn’t. It was weird. It didn’t seem to match anything. It wasn’t exactly like the previous DLA forms I’d filled in, and it wasn’t like the PIP form I’d been expecting. What the hell was it?
I went back to read more of the detail in the letter. And then I twigged what had happened. They’d flipped it. Or to be more precise, they’d faffed it. The telling phrase was as follows: “We’ve decided to gradually introduce Personal Independence Payment for existing DLA claimants into just a small area so we can monitor this new process.” Translation: “We’re hopelessly behind and the backlog is horrendous.” So what I’ve actually got is the old Rising 16s DLA form. And God knows when the PIP will pop up.
So I suppose I'd better stop blathering on here, and get on instead with the new type of form that isn't exactly the new type of form I was expecting. In the words of Hall and Oates “She’s a maneater!”. Hang on, that's wrong. I mean in the words (ish) of Captain Lawrence Oates: “I’m just going in and may be some time.”
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