It’s a while since I posted an update on Dylan’s progress. Reflecting on it today I am mostly struck by how well things are going. Christmas isn’t an easy time if you are autistic but Dylan seems to have taken it in his stride this year and coped with the changes in routine which a holiday brings. I suspect that is testament to Dylan’s increasing maturity as well as to our growing understanding of what helps Dylan to manage times of challenge and stress.
We have realised the need to organise Dylan’s weekly schedule, for example, so that it always ends on the day he comes home. What this means is that Dylan’s week is not always the same as a calendar week; awkward for fitting in with staff rotas and fiddly to customise the schedule columns, but worth it to avoid the stress it causes Dylan if the week doesn’t end at home. A calendar week, after all, is a construct and utterly meaningless to Dylan; we have to keep the rhythm of time which Dylan feels.
It took a while for us to grasp what was causing Dylan anxiety about his schedule. After I realised, I thought about how frustrating it must have been for Dylan, trying to communicate to us what he wanted. His attempts to show us had involved such things as him asking us to cut the last day off his schedule. When we had done that he would often want it re-instated. We puzzled away at Dylan’s to-ings and fro-ings about the end of the week. Perhaps we haven’t completely understood what he wants but I’m fairly optimistic that we’re in the right area. Dylan has been pretty patient with us while we’ve been trying to figure this out 🙂 That’s one of the things I had in mind when I referred to his ‘increasing maturity’.
Dylan seems to have coped with the loss of E, the key worker who settled him into his residential setting and who he had come to love. There were a few incidents in the immediate aftermath of E leaving (to take up a new post) and I was a bit concerned about Dylan. Dylan has experienced the loss of a number of key people from his life over the years, something which has caused him huge sadness and grief. “Mummy will always be here for you”. I sometimes tell Dylan when I think he is grieving. It can’t always be true, I know, but it seems to help.
So after E left I tried to be more present for Dylan. I resumed my mid-week visits to Dylan, for example, and we went to Pizza Hut for dinner as we had when Dylan first moved to the care home. This seemed to help, perhaps through the association with a period of change which Dylan had already successfully negotiated.
I will be grateful to E for many things but one legacy in particular is her focus on equipping Dylan with strategies for self-managing his anxiety. While we cannot stop Dylan from experiencing anxiety, she explained, what we can do is help him to recognise it and adopt methods for de-escalating it. Tearing paper, for example, is something which seems to calm Dylan and he now has a ‘ripping box’ which he can be directed to when he becomes anxious. Sometimes Dylan doesn’t get to the ripping box in time and tears one of his books or his weekly scheduled instead – but as E pointed out to me, we can always print out another schedule and replace a book, if necessary.
Dylan did quite a lot of ripping in the aftermath of E leaving and I tried to reassure myself, during this time, that this was a positive behaviour and that Dylan was managing his emotions. The extent to which this represents a significant development is clear when I recall that previously Dylan would have become physically aggressive at such times.
As well as using methods for coping with anxiety that have been suggested to him, Dylan seems to be adopting strategies of his own. He has always been very attached to a photograph of my mum which he keeps by his bed at his residential setting and brings home at weekends. Recently, Dylan has been carrying the photograph with him on day trips as well.
Sometimes it seems to be enough for Dylan that he has the photograph of his Gran with him and she remains in his backpack during the trip. Other times, however, Dylan gets the photograph of my mum out of his backpack and places it next to him. I’m curious that these times are often in locations which Dylan probably associates with my mum. One day we went to the bookshop, for example, and Dylan placed the photograph of mum on a beanbag then took from the shelves two books which they would often read together: Handa’s Surprise and The Mousehole Cat. I liked the idea that Dylan was sharing the books with his Gran and that he was finding some comfort in this.
I think of the photograph of my mum as an ‘object of reference’ for Dylan. I could consider it inappropriate for him to take it out with him into the community, but I think it is helpful for Dylan and I prefer to let him use it as an emotional support. My guess is that it’s a response to a change in key worker; Dylan is adjusting to the loss of E by referring back to other instances of change and loss. I assume that in due course he won’t feel the need to carry the photograph with him, always.
I miss my mum as well, of course. Supporting Dylan with his grief helps me to manage my own, especially at times when we are vulnerable, such as Christmas. Dylan carrying the photograph of his Gran around with him enables me to talk about her in a way I might not without such an object of reference for grief. “Your Gran used to like to come here for Christmas Eve, didn’t she?” I said to Dylan as we walked around Castleton village, as we do every year, on the night before Christmas. It’s one of her traditions which I’ve kept going in the belief that continuity helps Dylan to develop a sense of his own life history and place in the world.
Castleton is famed for the caverns which lie beneath its limestone hills and on our Christmas Eve visits we always walk up to the mouth of Dylan’s favourite cave, The Devil’s Arse (or Peak Cavern, as it is also known). Dylan has a particular interest in caves; he likes the blackness and the acoustics, I think. If you have sensory issues, a cave is probably quite a comforting place to be. There is something about cave space which absorbs chaos. So a visit to Castleton, which isn’t far from where we live, is a popular outing with Dylan and we quite often go there to take a trip down a cave. Not on Christmas Eve, however, as it is closed for regular visits. Instead, a Christmas concert takes place inside the cave: a brass band, mince pies and mulled wine, song sheets and family singing. As this completely undoes the usual charm of the cave, it’s not the sort of event I would ever plan to take Dylan.
The concert takes place in the early evening so when we arrive at the cave in the late afternoon the gate is barred and I manage to explain to Dylan that we can’t go in as it is closed for Christmas. When we arrived this year, however, it was to the hum and bustle of an earlier-than-usual concert about to start. The cave was lit like a ship and inside people were seated as the band tuned up. Curious, Dylan pulled on my arm. “You won’t like it Dylan”, I said. “There will be music. And babies.” Dylan continued to pull me over to the gate. The doorman explained there were no tickets anyway: it had sold out in November and two tickets that had been returned that day had been reallocated within five minutes. Dylan, of course, didn’t understand this. He pulled on my arm. “Let’s go, Dylan”, I said. But we were going nowhere – Dylan wanted to go in. I would just have to let things unfold, I decided, and deal with whatever happened.
We were given the nod just as the concert was about to begin. This was probably helpful in that we were able to find seats in the far reaches of the cave, beyond the last row of seats. Dylan doesn’t like mince pies but he’d taken the one he was offered and now proceeded (to my amazement) to eat it. The next surprise was that Dylan didn’t cover his ears when the band started up. Another surprise when he started clapping, spontaneously, at the end of the first carol. And then, glory be if he isn’t swaying to the music, stamping his feet and flashing his best grin at me. And so we spent Christmas Eve in a cave – or at least an astonishing 50 minutes of it, leaving only just before the end, when Dylan decided he had heard enough. I was thrilled by the experience, not just for Dylan, but myself: I got to go to a carol concert this year 🙂
This was the highlight of my Christmas but there have been other things to enjoy too. Dylan and I spent Christmas Day, as ever, out in the Peak District with a picnic. This year I had chosen Stanage Edge, hankering after a high place. As Dylan’s visual programmes are produced in advance, I have to make decisions about how Dylan and I will spend our time a week before the activity. When I opted for Christmas Day on Stanage Edge, what I didn’t know was that Storm Barbara was due to make landfall and would be passing through the Peak District.
Our walk that morning would best be described as ‘challenging’; we inched our way along the edge, battered by high winds. At some point I became anxious that we could be blown over the top so spent most of my energy trying to draw Dylan inland through the marsh and bog I would normally steer him round. “Picnic”, Dylan asked hopefully. If it’s on the schedule, not even a storm can blow Dylan off course…
Dylan certainly extended his vocabulary this Christmas. “Wee” (wind) he said to me repeatedly. “Wee, wee”. “Yes Dylan”, I replied, it’s very windy today.” As we picnicked under a sheltering rock I smiled at the thought that the storm was called Barbara. That was my mum’s name. “It’s your Gran” I said to Dylan as the wind whipped his Santa hood up around his head – “It’s your Gran wishing you happy Christmas”.
Season’s greetings to those who celebrate
Happy New Year
Thanks for following Dylan’s Story in 2016