It’s a while since I posted an update about Dylan. I’m not sure why: life has continued its twists and turns, with plenty to reflect on as ever. I’d like to say that my silence here has been because I’ve been writing poems but I’m not sure that’s true. Work more likely 😦
Well, I’ve made a bit of space today for a quick post about silver linings. As I type that I call to mind a favourite song which Dylan and I often listen to while driving so let’s have a burst of that first…
Silver Lining Number One
I often say that what matters is not the error but the fix. When my students complete evaluation forms at the end of semester it frustrates me when they complain about a problem I thought I’d responded to during the module. ‘Please don’t focus on the things that went wrong’, I want to say to them before they fill in the form: ‘think about what I did to make it better’.
Something went a bit wrong at Christmas when Dylan didn’t have a Christmas card or present to give to me. I had assumed Dylan would bring something home with him as this is what has happened every year since he moved to residential care. I will never forget the impact of this the first Christmas; Dylan’s gift and card were completely unexpected and moved me to tears. Before that, I had never received a present from Dylan that I hadn’t chosen and bought myself. The soaps and candles Dylan gave to me that year were the sweetest indicator of my son’s growing independence. Since then, Dylan has brought gifts for me every Christmas, birthday and Mother’s Day without fail.
So I was puzzled that Dylan didn’t have even a card for me and sister this year. Dylan seemed conscious of his lack of something to give on Christmas morning; we have built a routine in the last three years for the exchange of gifts and something in Dylan’s body language made me imagine him anxious or sorry (though this could have been projection). I took the label off a Christmas hamper meant for my father and gave it to Dylan to give to me instead.
Afterwards, I wasn’t sure whether to say anything to staff at Dylan’s residential home or not. I felt a bit of a Diva complaining that I hadn’t had a Christmas present. In the end I did, however; the exchange of gifts with family and friends is important social learning which Dylan needs support with. And I was glad that I did mention it as it turned out to be simply one of those things that had slipped through the net. They thanked me and assured me it wouldn’t happen again.
As I have observed, what matters is not the error but the fix. After Christmas, parents were asked to send the birthday dates of family members for the diary. And here is Dylan delightedly clutching the gift he made for my February birthday. The new social enterprise coordinator, J, is now supporting residents to make their own presents. It’s a small thing, but a silver lining to a parent.
Silver Lining Number Two
As I’ve noted before, When Dylan is very upset he destroys the things he loves most. These incidents – in which Dylan can become consumed with despair – arise, I assume, from our failure to understand what he is trying to communicate. Dylan has, in the past, shredded cherished photographs, leaflets, Filofaxes, schedules, clothes, books and DVDs. Afterwards, when Dylan has calmed, he faces the additional distress of no longer having the comfort of objects which meant a great deal to him.
Over the years, there has been a lot of ‘re-buying’ of pajamas, books and DVDs. The ripping of PJs, in particular, has proved quite challenging. Dylan is a man of taste; his preference is for classic trouser and jackets, usually in good quality (but nonetheless rip-able) fabrics. At the end of last summer we decided to call a halt to the expensive replacement of PJs by keeping Dylan’s clothes drawers locked. He does still rip PJs from time to time but he no longer has free access to them for ripping sprees overnight.
When we moved to locking Dylan’s drawers I felt sad. It seemed to me a regressive step and a reduction in Dylan’s independence. Each time we have decided not to replace something Dylan has destroyed – a photograph album, a Filofax – I have felt the erosion of his independence and dignity in the loss of the object itself. So it was with a heavy heart, following a particularly distressing incident recently, that I suggested the time had perhaps come to lock Dylan’s DVDs away.
There was something about restricting Dylan’s access to his DVDs which I found difficult. He has his favourite films on his ipad (which Dylan has not so far attempted to break) but the DVDs serve a deep need which Dylan has for physical artefacts. He likes to look at the covers, open the cases, hold the discs in his hands – the pre-play rituals which Dylan associates with his DVDs can last for anything up to 30 minutes. Because of this way Dylan has of organising and handling his DVDs, I had never seriously considered limiting his access to them.
Once I’d accepted that a lockable cupboard was the only way forward, however, I decided I may as well commit to the project and take the opportunity to re-organise Dylan’s room. The residential home donated a heavy duty, clear-view cabinet where Dylan could keep his DVDs. I took leave from work and spent a day shifting, scrubbing, polishing and sweeping. Relocating Dylan’s (somewhat depleted) collection provided an alternative space for Dylan’s books, allowing surplus shelves to be moved out of his room, creating a sense of light and space. This, I said to a member of staff who came to see how I was getting on, might be the silver lining.
Based on my experience of making changes at home I had decided it was probably best for me to re-organise things while Dylan was out. If he could see my completed ‘suggestion’ he might accept the change but would almost certainly resist any moving of furniture if I tried to involve him in the process. I wasn’t sure how Dylan would react to the re-organisation but was in no doubt that he would let me know if he didn’t approve. So I was a little nervous when I heard Dylan bounding up the stairs, returning early from his swimming trip. I hadn’t quite finished. I pushed a pile of rubbish out of sight, straightened his duvet, lined up his remote vehicles, sat Buzz and Woody on his newly-positioned chest. They can see the TV from there, I said to Dylan. You can sit here, look. And see: here are your DVDs.
Dylan’s eyes darted quickly around, taking everything in. Then he smiled his silver lining smile…