My friend reminded me last night, as we made our way to Show Boat at The Crucible, that this time last year we saw Anything Goes. ‘Do you remember,’ she said, ‘that it was your last respite night’. I hadn’t, but she was right. What’s more it was a year to the day exactly; I knew that because I had cited 18th December on official paperwork as Dylan’s ‘last respite date’. ‘It’s becoming a tradition’, my friend said: ‘let’s hope they stage something for us next year’.
The reason it was my last respite night, this time last year, is that Dylan’s short break provider no longer felt able to support him given his increasingly ‘challenging behaviour’. I remember it as a bleak period; Dylan was displaying behaviours in the home as well as at his day and respite centre so the withdrawal of support left me alone at a time of particular need. This morning, thinking about how much had changed, I looked back through an old diary. In an entry on 20th December 2014 I noted that I had been to Anything Goes for my final respite ‘with nothing on the horizon until the confusion of whatever next is sorted out’. I recorded that I had: ‘tried to take every minute of pleasure I was offered, knowing that for the next three weeks I will be head down, alone and without support.’
I smiled wryly at this. I had assumed that I would be able to identify another respite provider in the new year. In the event, however, none of the settings I visited after Christmas were able to meet Dylan’s needs. How would I have felt, I wondered, had I known then that ahead of me lay six months without respite? I turned the pages in my diary, trying to remember how I coped alone with Dylan through Christmas and the new year. My entries reminded me that he had settled a little over the holiday period but become anxious and distressed again in the new year. Dylan’s need for higher levels of support meant I was encouraged to consider residential settings. After a visit to a provider in the new year, however, I had doubts. A diary entry on 10th January ruminates on Dylan’s options and the difficulty of making a decision:
Oh I don’t know. I honestly don’t know anymore, if I ever did, what to do for the best. I am losing my heart and nerve about this. Several things have happened to make me think, increasingly, that it is not right, the move. The move to there anyway. That day in the park at Christmas – I had been talking to him about moving out. Maybe he knows. Understands more than I think. Everyone is saying ‘anxiety’. Perhaps this is the anxiety now? Other than that day, he has been settled recently and seems happy. I keep remembering that the bad attacks started after I’d been away for a few days in June. That sometimes they have happened when things are ending or there is a sniff of change. It isn’t the whole explanation but transition/change and anxiety is part of it.
Well that isn’t a reason not to introduce change is it? No. And it’s also true that I’m tired and almost at the end of myself as a carer. This has to happen. But perhaps he needs less change. Maybe it should be [our home city]. And the day centre still. And a quiet house not a noisy one. This week we visited [the setting] briefly and I honestly could not see Dylan there: it was noisy and the young men were shouting and distressed and they weren’t eating together (it didn’t feel like a home). And I just didn’t want Dylan there. It felt claustrophobic upstairs – all those bedrooms clustered around.
But what can I do? I need something. I have to have some respite at the very least. I haven’t had any since 18th December. What to do?
Reading this diary entry I’m struck by three things. Firstly, some of the judgements I made are not the basis for a good decision; my observations about eating arrangements, for example, and noise levels are based on a comparison with my own home rather than communal living (which can be noisy and in which context people with autism may prefer to eat alone). This is not significantly different to the arrangements in the home where Dylan now lives, and with which he doesn’t seem unhappy.
Secondly, many of the observations I made – even those which appear contradictory – are reasonable and may well be the case: Dylan does and doesn’t like change; he does and doesn’t understand me; he is and isn’t anxious; he does and doesn’t tolerate noise. This can make it difficult to come to a clear view or confident decision. But maybe there can’t be any confidence or clarity about decisions, only a commitment to think carefully and (so far as is possible) through the eyes of your child, and to resolve to keep things under review. If a decision turns out to be the wrong one it can always be changed.
A year on I feel as if I got a bit lucky last year; I trusted an instinct not to go ahead with a perfectly good provider which gave Dylan a chance of a place at his current care home where he seems happy (that’s not to say he wouldn’t have been happy in the other setting). In the past, I’ve sometimes wished for a crystal ball; making decisions can feel so capricious that the desire to see into the future becomes powerful. The third thing that struck me when I read my old diary today, however, is that it’s not a good idea to know too much about the road ahead; the best way of surviving six months of struggle and despair, perhaps, is to tell yourself it will last three weeks. So maybe it’s best not to wish for anything or look too far ahead (except, perhaps, to hope for a Christmas show next year).