As Christmas approaches it becomes more difficult to maintain the pattern of my visits to Dylan and his trips home. I want Dylan to have the opportunity of spending time with me while I’m off work but I don’t want to interrupt the routines he enjoys at his residential setting. Getting the balance right will be important, I suspect, as Dylan could easily become anxious and overloaded at this time of year.
I have suggested that Dylan be given a two week programme over the Christmas break so that he can see the pattern of his visits home and the rhythm of the Christmas and New Year holidays. My current theory is that Dylan doesn’t mind if I don’t visit on a particular day as long as I am on his programme somewhere in the week. My plan this year is to have Dylan at home for familiar rituals and routines so that his first Christmas in residential care doesn’t feel too strange. I’ve arranged for Dylan to come home for a few days this week, for example, to celebrate the winter solstice with me.
Dylan was waiting for me when I arrived to collect him today. ‘Cake’ he said to me as he led me through the house to get his bags. Well-remembered Dylan, I thought to myself; I’d told Dylan, when I saw him earlier in the week, that we would be picking up a cake today. Although the cake must be very attractive to Dylan (especially as holly is one of his particular interests) he won’t be able to eat it due to his sugar-sensitivity. It’s hard, if you live with someone with a restricted diet and limited capacity, to know what to do for the best in relation to your own diet. I don’t usually have sweet foods myself when I’m with Dylan but I decided that this Christmas I would.
I have some awareness of how it might feel for Dylan not to have sugar when there is so much of it on offer because, as an ex-drinker, I can sometimes get stressed by the amount of alcohol on display. I’d do well to remember this if Dylan gets agitated about sugar over Christmas. There are ways of softening the frustration too: vanilla kipferl baked with sugar substitute for Dylan, ginger beer for me.
Once we’d got the cake safely home today I expected Dylan would want to watch a film but he hovered around, looking at me as if there was something I’d forgotten. ‘I’ll just make a cup of tea’, I said. Dylan looked at me alarmed. ‘Sam’, he said. I looked at him, puzzled. ‘Sam’, he said determinedly, ‘Sam’.
It took me a while to remember that Sam was the name of the man who sold us our Christmas tree last year. We had bought it from a local farm which Dylan was attending, at the time, as part of an educational programme. Perhaps it was for this reason that Dylan remembered Sam’s name and associated it with this thing he wanted (as it turned out) more than anything else today. Fortunately the farm was still open when we got there, although there weren’t many trees left and there was no sign of Sam. The man who helped Dylan pick out a tree assured us, however, that Sam still works there. ‘Maybe you’ll get to see Sam next year’ I told Dylan as we drove our Christmas tree home.