May Is The Cruellest Month

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

 T.S. Eliot, The Burial of the Dead

It may have been April for Eliot but for me it is May, with its pattern and paradox, its light and shade, which is cruellest. O I know that it is lovely. When I lift my head I catch sight of the blossom. Here is wisteria blooming in my courtyard and bluebells at the foot of a neighbour’s tree. Here are wild service trees along the route to work and cherry petals heaped on pavements. Here, at the edge of the city, are fields of yellow rape and hawthorn hedges.

                                                If you came this way,
Taking the route you would be likely to take
From the place you would be likely to come from,
If you came this way in may time, you would find the hedges
White again, in May, with voluptuary sweetness.

 T.S. Eliot, Little Gidding

But I know that when the May breaks out in creamy flowers, musky as death, I must keep my head down.

last day of May 010

Marking Time

As a child and young woman May enchanted me. Not one to believe in the stars I had to admit there was something about Taureans; my best friends and nicest boyfriends, it seemed, had birthdays in May. There were high days and holidays: May Day, Half Term, Spring Bank. And there were days of sudden warmth better than any in mid-summer. May was charmed and lovely.

May 013Only in adulthood, once I’d entered the education workforce, did it became cruel. I’m lucky to earn my living as I do; I love my teaching. But twice a year, in January and May, it is marking time. The marketisation of higher education in England has led (among other things) to an increased emphasis on accountability and efficiency. The prompt assessment and return of student work is something which is believed to influence student satisfaction and most universities have reviewed their policy and practice in relation to marking. it is not uncommon, as a result, for academics to be working to assessment deadlines of three weeks or less.

It is undoubtedly the case that some of the developments in higher education in the last five or ten years have enhanced the student experience. There was, it’s true, a laissez-faire approach to the return of student work in many institutions previously. I’m not convinced that the three week turnaround is appropriate; I think students care about the quality as well as speed of feedback and the short deadlines do, without doubt, limit the time which can be spent on individual scripts. However, I support the general principle of setting and meeting deadlines for the return of student work. And I actually don’t dislike marking: even with the limitation of feedback deadlines it offers an opportunity for dialogue. Why, then, is Maytime marking so cruel?

Marking and Caring

I’m fortunate to work in a sector where it has been possible (with reasonable adjustments) for me to continue working while caring for Dylan. That wouldn’t be so easy in some occupations I know. Even with adjustments, combining working with caring is challenging when you are a single parent. For me, marking time is when I particularly feel these pressures.

Working parents of very young children may recognise some of the conflict I experience at these times. In order to meet marking deadlines it is quite normal to have to work through weekends and at evenings. Like a much younger child, Dylan finds it difficult to understand why it is that ‘moo-ey’ (as he calls me) is suddenly not as available or responsive to him at these times. Whereas normally we would be out and about in the community and going for long walks in the Peak District, during the marking period my caring is limited to ensuring that Dylan is safe in the home while I work.

During the January marking period this somehow doesn’t feel so bad. The weather is usually poor and the days are short, lessening the hankering after time outdoors. I can often hunker down with my marking while Dylan watches DVDs. But in May Dylan’s frustration with the situation is palpable. He has a built-in body clock (which I’ve written about elsewhere) which means that at 2.30, on the dot, if we are still in the house he wants to get out. Dylan will come to find me, then, wherever I am and strike his ‘I’m waiting’ pose. This involves Dylan standing – back straight, arms crossed – with a fixed stare. He waits patiently in this position, watching me. His gaze is steady. ‘Two minutes’ I sometimes say, ‘just two minutes and I’ll come’. That’s not true and Dylan knows it. Eventually, holding his position, Dylan will tell me what it is I am doing: ‘poota’ or ‘rea’ or ‘wye’. Under normal circumstances, I will stop, then, and respond to his not unreasonable request. In May, though, with a self-imposed daily quota of scripts to read in order to meet my deadlines, I may stall. And then ‘na na na na na’ Dylan rattles at me, like an angry machine gun.

May 011When Dylan was still at school the challenge of marking during May was compounded by the regular school holidays. The May Day, Half Term and Spring Bank which had so beguiled me as a child became a headache as a parent. It always felt to me like a lose-lose situation. If I succumbed to Dylan and the outdoors I couldn’t relax for worrying about getting the marking done. If I tried to manage Dylan at home while I worked we would both end the day frustrated and unhappy. While we were a two parent family my ex-husband and I would alternate shifts of child care and working which was slightly easier – though still, I recall, with the potential for angst and frustration.

There is no easy solution to the challenge of managing caring responsibilities with pressure points in working life. Having friends and family who are able and willing to help out at such times has to be the best possible solution. For those of us who don’t have such networks, play schemes and holiday activities would be a great alternative. In England, though, we don’t have the same culture of ‘camps’ as in, for example, the United States. Very few such opportunities exist and where they are available they are usually only for a few weeks in August and for limited hours. Furthermore, they are rarely (if ever) inclusive. Throughout his childhood Dylan was only ever able to access one play scheme, organised by a local parents group. He briefly attended a Saturday club but when that closed there were no other social opportunities appropriate to Dylan’s level of need in the city. For young people like my son, who present with complex needs in addition to autism, it is virtually impossible to secure satisfactory out-of-school care.

Healing May

last day of May 007In last week’s post I described how, earlier this month, I took Dylan for a short break in Scotland. Part of my aim in timing the holiday as I did was to give Dylan a bit of attention before the bulk of my marking was due. I knew that, for the rest of May, I would be juggling caring with marking. It seems to have helped a bit; I’m almost half way through my marking now and the process does feel a little easier than in previous years.

That wasn’t the only reason for the timing though. If you work in a sector where there are specific pressure points in the year it is possible to have your head so far down you can no longer see. This year I didn’t want to miss the blossom; I wanted to make room in my life for May. I like to think that, as well as signalling a fresh approach to marking and caring, this indicates a sense of healing. For here is another reason why May can seem the cruellest month: it is when my mother died. I suspect that since her death, in 2006, part of me has been prepared to miss May, while I marked, in order to avoid painful associations with the time of year.

My most recent collection, A Dart of Green and Blue, opens with a sequence of poems which track my grief in the aftermath of mum’s death through a period of nine months. In the following poem, which is located early in the sequence, I repeat selected words (including May/may) to represent the way in which the bereaved can get stuck at the moment of death but also want to hold on to it in order not to forget.

May

Everything slow this year. Heavy and green with rain
hawthorn hung stubborn, withholding the May.
At the edge of my distracted sight I may
have caught the vaguest sign of change the day
she died. But it was the next day
(the 4th) I woke to an absence of rain.
Cruel – indifferent – the sun rose again
and, as if spring were remembering itself again,
buds opened. Even the wisteria she’d said may
not flower threw clusters of blue jewels. All day
I thought: She’s missed it. It’s too late. Last May
we walked the hedgerows on the Edge. The rain
had drawn the hawthorn’s musky scent that day:
brings death, I’d thought, as I broke a branch of May.

*

last day of May 009Grief, somebody once told me, involves the reconciliation of the fear of forgetting with the pain of remembrance; eventually we realise that we will never forget but that it no longer hurts so much to remember. This year I am trying to celebrate May by remembering my mum and the way she helped me to love this time of year as a child. I hope that, as well as getting my marking done, I am finding time to teach Dylan how to love May too.

References

Elizabeth Barrett (2010) ‘May’ in A Dart of Green and Blue. Arc Publications
T.S.Eliot (1922) ‘The Burial of the Dead’ from The Waste Land. Faber and Faber
T.S. Eliot (1944) ‘Little Gidding’ from Four Quartets.  Faber and Faber

Autism And Transitions: supporting Dylan through change and loss

transition 002The Rule of Three

When I was training to be an English teacher my supervisor gave me a piece of advice:  focus on your classroom transitions he told me. Children and adolescents, the professor explained, don’t find it easy to move from one activity to another; they tend to get settled with one thing and then resist moving onto something else. Transitions within lessons, I was warned, are a flash point for disruption and managing them is key to an effective learning environment.

Prepare your class, I was told, by warning the pupils five minutes before that you intend to move them onto another activity. At the point of transition, name the activity which is ending and the one which is about to begin.  Five minutes later, reinforce the transition that has taken place by reminding pupils that one activity has ended and another has begun.

Years after I was given this advice I still draw on it even though I teach university students rather than school pupils now; my experience has confirmed its good sense and contribution to learning in all educational contexts. If mainstream students need this type of guidance, it’s no surprise that autistic children and adults require support with transitions.

The Rule of Half As Long Again

Dylan leaves school 014Many years ago, when I was grieving the loss of a lover, a girlfriend told me that it takes half as long again to get over a relationship. So if you’ve been in a relationship which lasted three years, for example, it’s likely to take you 18 months to fully recover.  Over the years I’ve applied this rule again and again and it has proved uncannily accurate. Perhaps because I am conscious of the  ‘rule of half as long again’ I make my healing happen to that time scale, but there have been times when I honestly haven’t been thinking about it and have suddenly realised that it has happened again. In 2009, for example, I woke up in a Paris hotel one February morning and remembered that it was the 5th anniversary of the end of my ten year marriage. Previously, this particular date in February had been a struggle each year as I saw the anniversary looming and rehearsed painful history and difficult feelings. That morning in Paris I realised that I hadn’t even noticed the anniversary; I was just getting on with my life.

I am so convinced by the rule that I apply it to all sorts of things. Quite often the calculation helps but sometimes, I admit, it can be sobering; there simply aren’t enough years left in my life for me to get over some of the things I’ve lost. I raise this rule  (a little playfully perhaps) in order to illustrate the impact of loss and change on our lives. It is said that life events such as divorce, moving house and changing job are the source of some of the highest levels of stress we are likely to experience. Each of these events, of course, represents a transition in that they all involve an ending and a beginning. Certainly I recognise in my own experience of relationships ending and of career and house moves, a period of grief, anxiety and sadness at what I have lost, as well as the anticipation of starting something new – and these are feelings I experience even when I’m looking forward to change. Is it any wonder, then, that Dylan should mourn for the loss of his school?

Dylan attended a National Autistic Society school between the ages of 11 and 19. He went to that school five days a week for eight years. He got on the school bus every morning at 8.15am and returned on it every day at 5pm.  That’s a lot of hours.  That’s a lot of time to spend getting to know every nook and cranny of a playground. That’s a lot of years to spend getting to know the way your teachers’ faces look and the sound of their voices and the rhythms of their classrooms.  That’s a lot of minutes to spend learning to be part of a group in assembly each day.  That’s a lot of seconds to spend getting to know a place so well you feel that you belong. That’s a lot of snow and sunshine and wind and rain and light for darkness and silence to fall, suddenly. Applying the rule of half as long again, I make that four years of Dylan grieving for that school. Starting now…

Objects of Reference

As a parent of an autistic child it can feel as if life is one long transition; as soon as one phase is negotiated I am looking ahead to the next, wondering what provision is available and how I can support my son to access it. The move from a school placement to adult services would, I knew, be the most challenging  transition Dylan had faced yet. I also knew that I’d need to actively support Dylan with transition from school because of his experience of leaving his respite (short break) provision the previous year.

transition 005Transition from school to adult education takes place at 19 whereas transition from children’s to adult services in the respite sector is 18. Dylan had been accessing a respite setting one night a week since he was at primary school and leaving the setting therefore represented a significant challenge for Dylan. Although the lack of alignment between the transition from education and respite care  is awkward, it could potentially ease the process by staggering change, allowing a young adult to manage a transition in respite care at 18 while in a familiar school placement, and then a transition from education at 19 once the new respite provision is established. Unfortunately it didn’t happen this way for Dylan; a four month gap in provision left him anxious about the break in routine and confused about why he could no longer go to the respite setting he loved.

Dylan leaves school 007When Dylan left the short break setting he was given a photo album record of his time there. Nearly two years later Dylan continues to look at the photos regularly. Recently he has started carrying it around with him and bringing it to show me photos and to ask me to talk to him about his time there. The album seems to be an important object of reference for Dylan; I think it represents a period of stability and Dylan looks at it at times of confusion to comfort and reassure.

Because of the lack of support for transition from respite I paid extra attention to preparations for Dylan as the end of his time at school approached. Unfortunately, in spite of years of researching and lobbying for Dylan, the experience of transition from school turned out to be  worse than from respite; four months after he left school Dylan still does not have a full time adult placement. In the absence of any plan for when he left school, Dylan’s teachers and I were unable to prepare him in the way we knew he needed. We did our best.  I visited the school to discuss and develop the use of an i-pad to support Dylan’s transition. I started using communication software at home which Dylan used at school. I made a gallery of photos of Dylan’s time at school. The school speech and language therapist wrote a social story about leaving school – not ideal, as we couldn’t be sure where Dylan might go instead, but we opted for one of the placements that was being discussed and crossed our fingers.

cetificates 005At the school Leavers’ Assembly I wasn’t sure whether or not Dylan understood what was happening. He only half-accessed the event, collecting his certificate from the side rather than the front of the hall and legging it at high speed afterwards. I thought that Dylan probably either knew exactly what the significance of the event was or had no idea. Afterwards I encouraged him to choose a frame for his leaving certificate and helped him hang it on his bedroom wall, wondering  if this object of reference would become another focus for grief – and if so, whether or not this was really helping Dylan?

Loss and Remembrance

Since Dylan left school I have been in continuous negotiations with relevant professionals while he accesses an ‘interim package’ of support.  The difficulty for Dylan, of course, is in the interim-ness of the care. With the false starts, uncertainty and lack of a fixed schedule it has been hard for me to tell Dylan what is happening from day to day. Despite best efforts, this is the worst case scenario for Dylan and I’ve been watching him carefully, trying to fathom how he is feeling and how well he is coping with the loss of school and the lack of certainty in his days.  There have been some signs of anxiety – the jumping which Dylan does when he stressed, for example – but, generally, I’ve been surprised by how well he is coping.

transition 001However, when I went into his bedroom one evening last week I was amazed to find it full of greetings cards. Dylan had arranged these on his drawers, shelves and wardrobe; the room was a riot of colour. You will see from the photograph that the cards mark a variety of different events but prominent among the messages are ‘Good Luck’ and ‘Sorry You’re Leaving’.  These are the cards which Dylan received from his short break provider and from school when he left. I’d stored these, along with last year’s birthday cards, in a box in Dylan’s room. I had no idea Dylan knew they were there but clearly (as with many things) he knew exactly where they were. Why did Dylan decide to get them out of the box and stand them up in his room? I assume because they are ‘objects of reference’ for a transition – or process of change – which he is struggling to come to terms with and which creates strong emotions in him.  Getting the cards out of the box and putting them where they could be seen seemed to me to be Dylan’s way of recognising and acknowledging his continuing sadness and loss. The cards represent places where Dylan was happy; displaying the cards appeared to comfort him but they also acted as a means of communication with me, letting me know that he was thinking about places he has lost and was feeling sad.

transition 006At this point I made a connection between the incident with the greetings cards and something else that Dylan has been doing recently.  I keep a photo of my mum, who died in 2006, on a high shelf.  It is the only photo of my mum on display in the house and one day I noticed it was missing. I found Dylan with it; he was sitting downstairs, holding on to it and looking at her intently.  Part of me was delighted to see this. Dylan adored his Gran; when she died suddenly, and without Dylan being able to see her or prepare in any way for what was to happen, I was very concerned about the likely impact on him (and on my younger daughter). Dylan’s social worker at the time gave me social stories to read to Dylan and made various suggestions about how I might help him to understand, but Dylan appeared unconcerned. His apparent lack of interest in my mum’s sudden disappearance from our lives both troubled and relieved me; part of me didn’t believe it, part of me was glad that Dylan appeared not to be suffering.

transition 007Finally, seven years after my mum died, I think Dylan has started to openly grieve for her. The photo regularly goes missing from the staircase now; I know, when it does, that Dylan is experiencing feelings of sadness and loss. The photo of his Gran seems to comfort Dylan. He has also started talking about her and bringing me a particular story book which he associates with her. Last week, on our trip to the library, he chose The Train, a book  which ends with a little boy getting off the train to be met by his Gran at their destination station. This worried me a little as I had booked a steam train trip for us that weekend, which I knew Dylan was looking forward to – was he expecting to find his Gran at the end of the line I wondered? I was so concerned about this I mentioned it to a counsellor. Her reaction surprised me. She thought for a moment then said this was probably a healthy thing for Dylan to be doing: that if we all joined up our experiences of loss and grief, and put them together as Dylan seemed to be doing, then we might find better ways of healing. Dylan, she suggested, is making creative links between periods of loss and change in his life, and is grieving in his own way, in his own time. This makes sense to me and has been a help. Now, instead of feeling anxious that Dylan is feeling sad when he fetches the photograph of my mum, I talk to him about his feelings and try to affirm them. I also try to remember that the link which Dylan has made is that he misses school like his misses my mum: ‘Your Gran would be so proud of you’ I said to him last week:  ‘to see you leave school and start at the day centre, all grown up.’

What have I learned from this? That ‘transition’ is another word for loss. That when we lose something we don’t always show at the time how sad it makes us.  And that Dylan has his own ‘grief map’ of things he has lost and which he misses. Transitions are never easy to prepare for but some are more difficult than others; my professor’s ‘rule of three’  can’t help with the death of a parent, as I found out.  Such a  reflection raises the difficult thought that one day Dylan will face a deeper loss than any yet. Perhaps these smaller losses, and Dylan learning how to remember them, are part of the preparation for that.