Although Dylan’s speech is limited he is pretty good at communicating his needs and desires; over the years he has developed a system of sound and gesture from which I can usually figure out what he wants. Sometimes, however, I am stumped. Tonight, for example, Dylan was trying hard to communicate something to me during dinner and I simply could not figure out what it was he wanted to tell me.
I had driven to see Dylan after work; as I was away last weekend it had been a week since we’d seen each other, the longest that Dylan and I have been apart. When I arrived he was in his coat waiting, bag stuffed with books and DVDs. We were about to head out when Dylan darted back to his room to fetch his visual schedule: ‘he likes me to talk him through his week while we’re waiting for the food’, I explained to the care worker. Once we were in Pizza Hut, however, the visual schedule became all-consuming. ‘Why don’t we look at one of your library books?’ I suggested. But Dylan was locked into ‘Sunday’ with its photo of me followed by a photo of home. I assumed Dylan needed reassurance about the weekend following last week’s change of rhythm: ‘You will be coming home soon’, I told him.
But this didn’t seem to satisfy Dylan. He kept tapping his nail on the photograph of home. Tap, tap, tap, went his finger – then he would look directly at me, waiting for me to supply him with the words he was looking for. I wasn’t sure what these were. Perhaps Dylan was upset because he didn’t get to come home last weekend? ‘That’s your bedroom, Dylan’, I said, thinking he might be pointing to the upstairs of the house. I got my pen and drew an arrow then wrote ‘Dylan’s bedroom’ next to the photograph. ‘You will sleep in Dylan’s bedroom on Sunday’, I told him. But this wasn’t the right answer. Tap, tap, tap went Dylan’s finger on the photo. Perhaps he was pointing to the downstairs room? ‘That’s the living room’ I said to Dylan: ‘where your favourite picture is: man, curtain, cross on the floor’ (chanting the litany of words which Dylan often asks me to speak). For once, however, talking about his favourite picture wasn’t enough: tap, tap, tap, went Dylan’s finger. ‘I’m sorry Dylan’, I said, ‘I don’t know what it is that you want’.
It had been lovely to see Dylan but I felt frustrated that communication between us had failed on this occasion. Dylan had something in his head that he wanted to tell me, or needed me to confirm, and I had let him down. I looked through Dylan’s filofax to see if anything in the notes could shed light on this for me; Dylan had clearly missed me at the weekend but that didn’t explain his tapping or the quizzical look in his eye. I couldn’t think of anything else I could do: ‘Come on Dylan’, I said, ‘let’s go’.
The first part of the drive to the residential home from the restaurant is through suburban streets. By this point in advent, most people have their decorations up. ‘Look at the Christmas trees in the windows, Dylan’, I exlaimed: ‘don’t they look pretty’. And as I said this, something dawned on me; the downstairs window of our house is where we stand our tree. Could Dylan have been checking that we would be putting our tree up this weekend? With my most reassuring voice I told Dylan that when he came home we would stand a tree in the downstairs window and make it pretty with lights and bows. When we got back to the residential home Dylan put his schedule back up on his pinboard. Tap, tap, tap went his finger on the photograph of home. This time I said: ‘and then we will decorate a tree and stand it in the window of the front room’. Dylan smiled: this was what he had wanted to hear. He turned to me: ‘bye, bye’, he said.
I took some photos tonight of the Christmas trees at Dylan’s residential home. Our family tradition is to put a tree up quite late, on the solstice, so it’s nice that Dylan has other trees to enjoy this year. Perhaps, next year, he will be tap, tap, tapping in the corridors of the residential home 🙂