Saturday 27 December 2008

Unwrapping another layer

Christmas can be a good measure of progress in children. This year Euan didn't want to open his presents. That was a step forward from last year, when he didn't want to be in the same room as them. The reason, with hindsight, was simple and a classic piece of autistic logic: we'd talked to Euan about Christmas lunch, cooked the turkey and set the table - and then gone into the living room to open presents. And in his mind he must have thought: they've promised me a slap-up feed, so why are they wasting time in the wrong room tearing paper off strange boxes?
This year Euan was happy to be among the boxes, but took no interest in them until someone else had taken off the wrapping. It was striking that his favourite presents were things already familiar to him: an Elefun game that one of his friends has, and a set of reading books he knows from school.
Euan's progress is erratic, unpredictable, alinear, but it is progress nonetheless. Every step along the way is a minor triumph. What's heartening is his determination to learn things that don't come naturally to him. When he started school it was unimaginable that he could do something as demanding as perform in a drama, yet last Tuesday he "sang his heart out" (Magteld's words) in the school nativity play chorus. In the first rehearsals Euan was distracted by the noise and struggled to follow the script, but as they practised more and the story became familiar, he became more comfortable. As it turned out, rehearsing a play over and over from start to finish played to his strengths: his remarkable memory and his ability to learn in sequences. The same faculty has helped him to learn the alphabet and to read books from cover to cover.
It also characterises his speech. Euan is getting better at asking for what he wants, but still can't really string a sentence together. Here's a conversation we had yesterday:
Euan: "I want some toast". (This is a good sentence, using 'some', an indeterminate quantity, in the right place. It's only in the last few months he's been doing this).
Me: "No, Euan, it's not time for toast. How about a roll?" I hold up the roll to show him.
Euan: "Yay! Roll! 'r', 'r'!" (rolling the r to show he's thinking of how to write the word).
Me: "What do you want on your roll? Cheese?"
Euan: "No, there's no cheese in the house. I need jam."
That last part needs a bit of decoding: what Euan actually meant was: 'I don't want cheese'. He's heard me say "There's no jam/cheese/peanut butter in the house" when we've run out of something, but it seems he understands it to simply mean a wrong choice. It's a classic piece of Euan-speak, taking a set phrase he's heard and trying to apply it, but not quite getting it right. (Using "need" to mean "want" is another example.) This way of using language in chunks makes it hard for him to string a sentence together or hold a conversation, but it still represents a giant leap forward and a huge effort on his part.

Saturday 6 December 2008


A cause for minor celebration: after three months of anxiously waiting and fearing the worst on our part, Euan's Disability Living Allowance comes through. It's the end of an exhausting and nerve-racking process whose keytone has been to expect the worst.
The anecdotal evidence amounted to a slurry of arbitrary decisions, torturous panel hearings and questions that would have poleaxed the Sphinx. "Everybody gets knocked back first time" was a phrase that became as familiar as a patch of mould on the bathroom ceiling, and indeed, as we spoke to people, a pattern seemed to emerge: you fill in your application form, wait a few months, receive the rejection letter, appeal to the appeals panel, sit in a room facing a forbidding-looking triumvirate of grim-faced civil servants, sweat another few months, and eventually pull off an against-all-odds victory. So when we were told we would be exempted from this merry-go-round, the relief was palpable.
The first step is to fill in a 40-page form, which is so daunting and bafflingly worded it must put many people off right from the start. (If we found it confusing, how must it be for someone with a basic level of literacy, or whose English is rudimentary? Yet these are often the people who need the money most urgently.) We had invaluable help from our local autism support group, yet even so, it took four nights to complete the form - four exhausting nights when we wrote until words failed us and we slunk off to bed emotionally drained. At the very time when a chorus of experts and source books were encouraging us to focus on the positive aspects of Euan's diagnosis, to work to build a viable future for him and for ourselves, and to appreciate the child he is rather than mourn the child we never had, here was a form asking us to detail in bald terms the worst, most debilitating consequences of his autism. In short, to measure the unfathomable. It asked us to describe an "average day" - belying the fact that the problem with autistic children isn't the average days. The average days, when everything goes by the set routine, are fine. You can almost forget your child has a problem at all. The times when you need help are the days that break the routine: going away on holiday, visiting family, wearing a new pair of shoes, deviating from the normal shopping list in the supermarket, and so on. We were advised: "describe the worst day possible." It didn't quite go that far, but we did have to detail, in unsparing and unflinching terms, the severe effects that these breaks from the norm can trigger. So being told we would not have to reapply until Euan's 11th birthday was a double dose of relief.
It's not just about the money, though that does come as a comfort and will enable us to give Euan all kinds of support we would have struggled to fund by ourselves. DLA is also the most widely accepted official recognition that your child is disabled - a stamp of approval that opens other doors. If I were advising anyone else applying, based purely on my own experience, I'd say the following: include as much official paperwork as you can - your diagnosis report should be top of the pile, along with any assessments you have from educational psychologists and therapists - be honest but unflinching about your child's condition (in other words, don't be shy to spell it out), and be very, very patient. It worked for us.