Day 100: End Post

solstice 009In September this year I wrote a couple of posts reflecting on the role which blogging had played in developing my thinking about autism and my practice as a parent to Dylan. One of the posts focused on the process of writing and the other on the role of online dialogue; both factors, I suggested, had contributed significantly to the way in which I support Dylan.

I wrote those posts to mark the end of Living With Autism and the beginning of the 100 Day Transition Project I called Living With(out) Autism. The new name was an attempt to capture the dual, and shifting, nature of the space I would occupy in the early months of Dylan’s transition into residential care. I wasn’t sure, at that point, how my writing would change or if a daily blog could be sustained. In Learning By Writing, for example, I expressed doubts about my ability to produce the shorter posts required for a daily blog and questioned whether such posts would be of interest to readers. In the last 100 days, however, I have discovered I was wrong on both counts.

As well as being pleasantly surprised by my stamina and ability to write more briefly, I am pleased that the everyday focus of my transition blog has been of interest to others. Above all, however, I am glad that it has been capable of supporting my learning and development. Shifts in understanding are not always dependent on critical incidents and some of my strongest insights have emerged from the most quotidian of days; like a good poem, my 100 day project has encouraged me to ‘shake the ordinary into new shape’.

solstice 011Sometimes the insight came not from the day itself but from the process of writing about it. Making daily blog posts is such an intense activity that the project has been almost as much about the writing, for me, as about the 100 Days. Considering Living With(out) Autism to be partly a vehicle for writing practice feels acceptable – even appropriate –  because the focus of my project was transition, a process which affects me as much as it does Dylan. While my blog posts have tried to consider transition from Dylan’s point of view, more often (I think, though I haven’t checked) they have focused on my own needs as I adjust to living without Dylan.

There is a sense, then, in which this project has been about the working out of new identities for Dylan and for myself. I have always been aware of  my multiple identities as poet, academic, mother to my children and Dylan’s advocate. Since Dylan moved to residential care, however, the balance of these identities has shifted; some have moved sideways, into the wings, while others are stepping forward, out of the shadows. My self-identity will, in future, no  longer be constructed quite so much around my relationship to Dylan. Furthermore, instead of being Dylan’s ‘carer’, I am now simply his ‘mother’; this makes a difference to how I think about myself as well as to our relationship.

A few people have asked what my plans are after the 100 Days. There are a couple of academic papers I’d like to write. Maybe I’ll get around to starting the novel I’ve been turning over in my head these last 20 years. I think what I want to do most of all, however, is focus on writing poetry for a while. But who knows  – perhaps I’ll take a complete break from writing and do none of these. I’ve also been asked if I’ll post updates about Dylan in the future. I haven’t ruled that out (perhaps as an occasional strand of a more general blog rather than a focus in itself) but I hope I never feel compelled to tell Dylan’s story as I did when I started this blog in 2013. When Dylan was born I wished for ordinary happiness for him; now, more than ever, I bless the unremarkable, quotidian days.

I’m marking at the moment. One of the observations I sometimes make on a student’s work is: ‘This essay doesn’t end, it just stops’. I fear I may be tying myself in a similar knot. To close, therefore, I will simply thank each and every one of you for reading my posts and for your interest in Dylan and his story. It has made a good difference to us. I wish you a happy and peaceful New Year: I will miss you.

 

solstice 008

 

Images:
The photos were taken in Sheffield city centre this week. I like the multicultural, multi-faith nature of my hometown. Dylan has his head turned to the sky, by the Christmas tree, to look at the statue of Vulcan on the town hall. All his life he has loved this: ‘A man! A man!’ he cries. In the last three years I have watched my son become one.

Day 99: Solstice

solstice 003I wanted Dylan to be at home today so that we could celebrate the solstice together. Marking the midwinter festival is a family tradition which involves holly-gathering, wreath-making and, as the light fades, decorating the tree while eating mince pies and vanilla kipferl. I could, I told myself, get some work done this morning and head up the valley for holly with Dylan before it got dark.

This year, however, our solstice celebration went awry.  Because I had succumbed to Dylan’s request to buy a tree yesterday (an activity which was on his programme for today) when he woke up this morning he thought it was Tuesday. Dylan had wanted to decorate the tree when we got it home last night and although I saved some of the decorations for this morning (to keep the spirit of our solstice tradition) as far as Dylan was concerned, our midwinter celebration had already happened.

I know that Dylan accepts change to his timetable when required as I sometimes get reports of this from his care home manager. Yesterday’s premature solstice, however, was not so much a change as an acceleration. I was anxious that Dylan might stay a day ahead for the rest of the week: that could be tricky (and disappointing) on Thursday morning, it occurred to me. After trying, and failing, to explain this to Dylan I decided to give in to the situation; a trip to the cinema to see The Muppet Christmas Carol and a ride on the winter carousel would, I hoped, distract Dylan and fill his spare day.

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This spare day was also, of course, the shortest day.  As I watched Dylan, riding the painted horses in the gathering dark,  I thought about my mum and of how she would have loved to see him on the carousel, today. The thought conjured the old ache, the one I get on the longest night each year.

Solstice

I count the shortening days to Solstice Eve –
stand each advent afternoon in winter light.
A slant of sun casts this room into relief –
long shadows repossess the last white
breath of light. My simple Christmas wreath
greets the longest night. I ache for her bright
voice to praise my plaited ring of ivy leaves,
to ask (so we avoid repeats) what she might
give her grandchildren this year. I do believe
she’s gone – I wish there were some respite
from belief in loss. But even in the night
my clocks don’t stop; absence takes light
hold and keeps a steady watch. There’s no relief.
Night outruns the sun and days dissolve to grief.

solstice 023Reading my poem tonight I am struck by the line ‘absence takes light hold and keeps a steady watch.’  Although I wrote the poem about my mum, I could equally apply the line to learning to live without Dylan: our hold on each other is lighter now, I think, but our watchfulness no less steady.

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‘Solstice’ is the penultimate poem in a sonnet sequence, Kingfisher, written in response to my mother’s death. The sequence was published in my collection A Dart of Green and Blue (Arc Publications, 2010).

After writing this post I discovered that Dylan wasn’t the only one accelerating through Christmas week this year; apparently the Solstice fell on the 22nd, not the 21st as it usually does (due to some astronomical quirk I don’t profess to understand), which means I held my vigil a day early this year. I like the connections I sometimes find between myself and Dylan :-)

 

 

Day 98: The Meaning Of Sam

cake and tree 003As 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.

cake and tree 004Once 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.

Day 97: A Year Ago

WP_20151219_006My 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).

Day 96: Disguise

Social Club 006I might not have done very much during my 100 days but this week I seem to be caught in a flurry of seasonal activity.  It’s certainly easier to accept invitations than it used to be; I’ve been out virtually every night this week. It feels good not to always be the person things have to be worked around; daytime socials or evenings planned to coincide with a rare respite night, for example.  So, for a change, the annual gathering of hilarious women was held last night instead of during the day; here I am, disguised behind a funny mouth.

As well as invitations being easier to accept since Dylan moved to residential care, they are harder to decline. Now I don’t have my stock excuse of ‘I’d love to but I’m afraid I can’t leave Dylan’ I have found myself at gatherings, sometimes, I would have done well to avoid. Happily, I have only been to one such event recently; enough to feel grateful to Dylan, however, for the events over the years I’ve been spared. I’m quite aware that, in the past, I have sometimes played my automatic line with relief; I’m going to have to script some new ones for myself in future.

Not today, however, as ahead of me are genuine treats: afternoon tea and cake at my favourite café; Christmas shopping for Dylan; dinner at one of my favourite restaurants; and Showboat with one of my nicest friends. And as I type this I am reminded that I am lucky indeed: not a single thing in my list would have been possible last year. Dylan has settled so well into his new home, and the transition process has felt so natural, that it is easy to forget, some days, how different life once was.

Less than half a year ago I would rarely consider going to a café during the day; life was lived at high-speed, with me rushing between home and work in the morning, and back again in time for Dylan arriving home for tea. I remember how stressful the late afternoon would feel as I raced between appointments or prepared lectures at my desk frantically, clock-watching and dicing with leaving times, pushing the limits of my home ETA. Afternoon tea and cake at 4pm? Impossible. A meal out and trip to the theatre? Once in a very blue moon.  A leisurely approach to Christmas shopping for Dilly? No chance: I would race around a single shop in a single lunch hour, hoping for serendipity. Which (it occurs to me, looking at the time) is what I’ll be doing again this year if I don’t get going :-)

Day 95: Borders

DSCF1244So my friend and I decided that this transition blogging has been time well-spent in that it has encouraged me to be watchful about Dylan (and myself) as we learn to live our separate lives.

I have needed the light and shade of these 100 days. In July I made a list of things I was looking forward to taking up once I was no longer a carer. On Day 79, however, I reflected that I hadn’t yet managed to kick-start my life. Five months since Dylan moved into residential care, I said to my friend, and I still hadn’t done anything on my list.  ‘Oh I wouldn’t worry about that’, she shrugged, ‘you can do those things later’.

By committing myself to observing this process for 100 days I have created a physical and psychological landscape as well as a virtual space. It can feel, on different days, like a limbo place, half-way house or no-man’s land: metaphors of loss, healing and conflict can all be applied to this learning to live without Dylan. Life as a carer is another country; I have been taking my time, crossing its borders slowly.

Day 94: Tap, Tap, Tap

Dylan's first other tree 002Although 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’.

Dylan's first other tree 004It 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.

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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 :-)