Day 25: Quarter

quarter 007

A year ago, when I realised that Dylan would have to move to a care setting, I started seeing a Gestalt therapist. I knew that after so many years of caring for Dylan, adjusting to life without him would be difficult. The therapist was great and I found it very useful. Last month, however, I decided I needed to reduce my outgoings and that she was a luxury. Besides, we agreed at our final meeting, I was doing OK –  and I had a plan to write my way through the first 100 days.

Before I began the 100 days I had some idea about how it might feel to write each day. Years ago, when I was separated from someone I cared for, I wrote a sequence of poems called ’16 days Without You’. I borrowed the framework for these poems from a sequence by Anne Sexton, one of my favourite poets. In 1969 she had published ’18 days Without You’, a series of poems which explored her response to a temporary separation from a therapist on whom she depended heavily (and with who, against professional codes of ethical practice, she had become emotionally involved). I had long admired these poems which seemed to me to move through all colours of absence: tenderness and passion; anger and impatience; doubt and anxiety; impotence and empowerment. When I attempted to write within a similar framework, I found the physical and emotional effort involved in producing a poem a day for 16 days utterly exhausting but exhilarating.

I never published my 16 pieces as a sequence; not because of Sexton’s (far superior) poems, nor because of anxieties about subject matter (my love affair was not with my therapist) but because, when I reviewed the sequence with a cool eye, the constituent parts did not seem to me to stand up. Some of the pieces did –  and I have published these as individual poems –  but many of the days, I decided, were about process rather than product. I’d say the same is true of daily blog posts; some stand by themselves whereas others need the company of surrounding days.


For me, writing is a process through which I make sense of the world as well as a vehicle for discovery. As I wound up my Living With Autism blog I reflected in this post that writing had led me to new understandings and realisations as well as to ideas for alternative ways of supporting Dylan. I wasn’t sure whether I would experience such learning through shorter daily pieces for a re-focused blog – but if I didn’t, I promised myself, I would stop.

Writing short daily prose pieces for a blog can be challenging to fit into the day sometimes but it is not demanding in the way of writing poems. So while I’m not sure if I’ll get as far as the solstice date I set myself, I am going to go on with this for the moment. I am, of course, conscious that the absences which Anne Sexton and I explored in our poem cycles were temporary; our lovers returned and brought a halt to our frantic poems.  The difference with Dylan’s departure is that his flight is forever; I will have to be the one who, one day, calls ‘enough!’

A quarter of the way through the time frame I set myself, however, I can say without hesitation that I am finding the process useful. I have certainly had flashes of insight and found new ways of thinking about Dylan’s transition as a result of my daily posts. I may have got to such positions without writing of course, but I like the way the blog encourages me to attend. In a previous post I reflected that my dialogue with others through Living with Autism had brought fresh perspectives and shifts of understanding. I wasn’t sure whether my shorter daily posts on Living With/Out Autism would generate the same dialogue but if anything I’d say the comments I’ve received in the last 25 days have been even more valuable. Thank you for reading and for your support :-)

Day 24: Winding Things Up

winding up 003You don’t want to let it run down, he said to me on Saturday when he brought it back. It doesn’t like that. Usually I say do it once a week but yours struggles a bit. It’s the dual train mechanism you see. It has to work harder. So you need to be topping up mid-week really.

Now if I give you this key I want to see you do it. Do you think you can manage that? Left hole first. That’s the tick. Now yours is quite strong so I need to see whether you can wind it. Clockwise. That’s towards your kitchen. Go on. Keep going. No you can’t over-wind. That’s a myth. You need to take it right to the top.

You still have a way to go. Just keep going. You’ll feel it hit resistance. Good. That’s right. I needed to see you do it. Some people just don’t have the confidence to wind, you see, but you’ll be OK. Now the right hole. That’s the chime. Same thing. Clockwise. Towards your kitchen. Now you need to do this without fail on Tuesdays and Fridays.

Oh no, I said. Not Tuesdays and Fridays. I’ll do it on Wednesdays and Saturdays.

He looked at me quizzically. Well I suppose you could. But I always suggest Tuesdays and Fridays. They are the obvious days.

Well, I said, I don’t think it really matters. And Wednesdays and Saturdays will fit nicely with one of my other routines. I promise you, I will never forget. Not on Wednesdays and Saturdays.


So this morning I wound it up. Left hole first, then the right. All the way to the top. That should give it enough oomph to keep going until the weekend, singing the quarters and gonging the hours in its comforting, ancient voice. And tonight after work, when I go to see Dylan, I can wind me up I thought to myself: all the way to the top, so that I last until the weekend.

Day 23: Photo

I was fiddling at my desk this afternoon, preparing to teach a session for the second time and wondering whether to switch round the activities. I wasn’t happy with the way it had worked earlier but couldn’t be sure whether that was due to the fire drill or my planning. I was feeling a bit flat and in need of a lift. As an email pinged into my inbox I glanced up, automatically.


I love it when Dylan’s care home manager emails me instant updates about his day. A friend told me this is something that happens on social media: people tweet ‘what I’m doing now’. That sounds like the sort of thing I wouldn’t have understood previously. I can see the value in it now though; these snapshots of Dylan not only reassure me he is happy, they help me to feel part of his life.

Today’s photo was taken at a farm which Dylan visited this morning. He’s often anxious about touching animals so I know that Dylan’s being brave here. I can tell from the photo that he is feeling relaxed though too. Photos don’t give us the whole picture, I know, but they can reassure us about some things.  I can see, for example, that Dylan is wearing his heavier coat which shows me staff are helping Dylan to dress appropriately for the weather (which was colder today). That’s a small detail I wouldn’t have got from Dylan’s daily care record but one which reassures me he is being well looked after.

Photos can be illuminating too. I notice, for example, that Dylan is carrying his sports shoulder bag. I have wondered, recently, why Dylan seems to have stopped using the Nike backpack he used to carry everywhere and seeing the photo reminds me to ask care staff about this.

I love receiving these updates. Care homes are busy places and I really appreciate that staff make time to send me such photos in addition to the regular updates I get about Dylan. When I receive one, as I did today, I remind myself that I’m lucky.

Day 22: TGIM

WP_20150912_15_20_34_ProNot because I particularly look forward to Monday but because for the last few weeks I have found Sunday evenings really difficult. This is definitely the time of week I miss Dylan most; there is something about leaving him after the weekend which is hard in a way my mid-week visit isn’t. So last night, feeling empty and unsettled, I found myself wishing it would hurry up and be Monday. Then, I thought,  I could at least distract myself with teaching.

I’ve used work as a strategy for coping with difficulty since I was a child so I know the dangers of such a behaviour pattern. In this instance, however, it is probably quite useful; I just need to find ways of riding these early weeks out, I tell myself. I don’t know why it should be so difficult on Sundays. It could be because at weekends, when Dylan comes home, there is a partial restoration of our life together. Or it may be that in taking responsibility for Dylan’s care at weekends I am reminded of his vulnerability and find it harder to leave him. Whatever the reason, I have to work hard at distracting myself on Sunday evenings.

Even when the evening is over the challenge doesn’t end. One strange reaction I have had to Dylan going into care is to feel more anxious overnight. This really is bizarre as I was far more vulnerable with Dylan in the house than without; if there had ever been (I don’t like to even think this) an intruder or fire, I would have struggled to keep us safe. So I really cannot fathom why I am more nervous without Dylan. Did I imagine, when he lived with me, that Dylan would spring from his bed and save us in an emergency? Or was it that his presence simply comforted me and allowed me to relax?

I have been Dylan’s sole protector for so long that I have come to think of myself as Amazonian, fearless in my defense and protection of him. So why, I asked myself as I checked the house for a final time last night, was I wishing that Sunday night would turn into Monday?


The photo is of Dylan trying out bell ringing at Sheffield Cathedral during a recent weekend visit :-)

Day 21: Backwards In Time

lily 001I can sense some anniversaries in the quality of light and feel of the air at a particular time of year; I don’t need a calendar to anticipate the dates on which my children were born or my mother died, for example. Although I’ve been divorced for many years, I am also still aware of the approach of my wedding day. This is particularly the case if the weather happens to mimic conditions on the day I married, as it did today.

Driving Dylan back to his care home this afternoon, I couldn’t help but remember how 19 years ago the sky had been equally cloudless, just as blue.  My ex-husband and I married in a meadow in Derbyshire; as well as family and friends, our witnesses that day were stones, trees and a river. Our daughter and Dylan (who had been diagnosed autistic just six months before) were in the meadow that day too.

So on the motorway today I was thinking about this and reflecting on how Dylan’s life might have turned out had the marriage lasted. Would he still have needed to go into residential care, I wondered? Perhaps not; maybe with two parents he would have got the support he needed at home? Then again, maybe not; he might have had to go into care earlier. Or perhaps Dylan would have needed the care he does now but not been able to access it? There is no telling what the situation would have been for Dylan, except that it would have been different. He would have benefitted from having another parent around, I acknowledged to the blue sky blue as I drove. But at the end of the day, I thought to myself, I can’t imagine Dylan in a better place than he is now; and it is the future that matters, I told myself.

The minute I had that thought, however, I questioned it; if that was the case, why was I driving myself so far backwards in time like this? And then I remembered how, when Dylan left school, he carried around a photograph of my mum and retrieved things from the past, such as old birthday cards. I knew that leaving school would be difficult for Dylan but I worried that the focus for his sadness seemed to be other things which had happened, in the past. When I mentioned this to a therapist, however, she had a different perspective. Joining up different types of loss, she said, was a resourceful thing to do. Making connections between things which had come to an end could help Dylan to understand and accept his feelings, she suggested. It was actually a good way of dealing with grief; if we made connections between different types of loss more often, she speculated, we might live more integrated lives.

If the therapist is right, going backwards in time could be a necessary part of going forwards. It hadn’t occurred to me, before today, that in order to open some doors to the future I might need to close some doors on the past. But perhaps that is a challenge for all parents when a child leaves home?



Day 20: In His Own Time

clock 003In May 2011, on a whim, I bought a wall clock from a junk shop. It reminded me of the clock that had hung in my grandparents’ dining room. I had lived with them for a short period as a child, while my parents were estranged, and the sound of their clock chiming the quarter hours had seemed in some way comforting.

“It has a beautiful song” the shop worker had said to me when he found me gazing at it. His translation for chime, from whatever mother tongue he spoke, charmed me.  “I’ll take it”, I said, as it played the quarter hour. Later, I discovered it was a Westminster chime, made in the 1930s by the Hamburg American clock company; my clock, however, only sang for three of its quarters due to an unusual dual train mechanism.

When my clock broke down the following summer this rare feature meant finding someone to repair the clock was tricky. I decided to trust my instinct for a repairer with respect for the past and a love of mechanism. I don’t remember exactly when he collected my clock but I think it was August 2012. I remember it was a Saturday morning and that he put it in a black bin bag; I have a vivid memory of watching from my front window and thinking ‘I have just let a stranger put my clock in a bin liner and disappear with it.’ Perhaps I wondered, even then, if I would see it again.

I still have the compliments slip the clock repairer gave me that morning. Later that year, when I’d heard nothing about my clock, I telephoned the number on it nervously, wondering if I’d been the victim of a clock heist. But I had nothing to worry about; the clock repairer gave a perfectly plausible explanation and I had said ‘no problem – in your own time’.

A few months later I rang again; ‘just checking on the progress of my Westminster Chime clock’. Again there was an explanation. From May 2013 I started recording my calls on the compliments slip (not that I made regular enquiries – it was half a year until my next call). On 21st July 2014 I was promised my clock by September. When the clock didn’t appear I telephoned on 24th November and was told the spring had broken; he would fit a replacement and return my clock in the new year. When I telephoned on the 2nd April 2015, not having heard anything, the repairer explained that he’d had to make a spring as they are no longer manufactured; he needed time to test my clock now.

I was starting to lose confidence. It was almost three years since my clock went for repair. Should I be worried? Each time I telephoned there was an explanation as to why it hadn’t been returned but how long could this continue? Should I be suspicious? And if I had been foolish to let a man take away my clock in a bin liner, what was the worst case scenario? If he had stolen my clock then it was to satisfy a need. I could live with that couldn’t I? Even so, when I was told (June 22nd) that my clock was still being tested and wouldn’t be ready for a few weeks I heard the frost creep into my voice.

I made my final telephone call on 1st September this year. My clock, I was told, would be ready the following week. This time I didn’t react; I had stopped believing in the clock. If I make any further calls, I told myself, they will only be to keep up this charade.  ‘In your own time’, I said.

Imagine my surprise, then, when I received a phone call on Friday evening. My clock was ready. Would I, by chance, be at home this weekend?  So more than three years after it went for repair, my clock returned today (in a black bin bag). The repairer has done a good job; my clock is singing the quarter hour as I type, its song bright and clear.


This afternoon, while out with Dylan, I thought about those long years and my patience through them. These are not qualities I particularly associate with myself – waiting, having faith in someone or something, being patient. And as I was thinking this I realised that I was standing still in a wood, waiting. Dylan had reached the part which he feels enchanted. Here, Dylan stands in trance, hugs trees, stares motionless across a field and reaches on tiptoe to hold his face to the pines. I am so used to this enchantment that I stand patiently, until Dylan is able to move on, without even realising.

I have had to learn such patience to let Dylan live the way he needs; waiting by streams and trees and dragons made from cutlery is what I do now. It can be difficult to wait but it is usually worth being patient, with Dylan. I was reminded of this earlier in the week when I visited him at the care home. I took Dylan to look around the local church. I let him pace the nave, as he likes to, and stare upwards at the glass. I waited while he walked the pews and checked the pulpit. Then, as I was about to suggest we leave, I realised Dylan was stuck  – not literally, in pulpit or pews, but in his head.

Dylan was counting. He was turning pages in a book and looking left, rhythmically. He had scrunched up his eyes in a way I know means he has temporarily screened out the world. I paused, wondering what to do. I really ought to get Dylan back to the care home; I needed to get to work. But interrupting whatever pattern Dylan had established could, I knew, lead to terrible distress. It was better, I decided, to be patient; I would wait for Dylan to do things in his own time.

Day 19: Walking, Interrupted –

walk 001The first casualty of Dylan’s transition turns out to be my left foot which this week protested it did walk too much. I hadn’t an inkling of the injury, earlier this week, when I told colleagues I was taking the challenge of walking-to-work in my stride and had ‘gone through a barrier’. The only barrier I was aware of by Wednesday evening, alas, was pain.

Subsequent investigations revealed a stress injury and possible nerve damage. My foot is painful, flaring like fire in my shoes. The likely cause is the sudden physical demand on my feet, combined with less than ideal footwear for the job. So I am back in the car, driving my foolish self to and from work, feeling chastened. I claimed, too soon, that I could walk my life without Dylan. So I have been thinking about exodus; I only walked for two hours a day in the last few weeks (and not every day). Imagine walking, for refuge, through day and night? Or as pilgrimage?


This morning I was puzzled to find emails and tweets in my inbox when I switched on my PC. I had forgotten that one of my poems was due to be featured on a poetry site today and the situation took me a few moments to grasp. I clicked onto the site to check all was well with layout  (not meaning to do more than this) then stopped stock still (left foot burning): I had forgotten it was this poem.

The piece is one of the first I wrote after my daughter disappeared in 2010. I didn’t write it immediately –  it was a long time before I could write anything at all  – but when I did start writing again, this piece, recording the last time I saw my daughter, was one of the first I wrote (happily my daughter and I were reunited a couple of years later).

As I read through my poem this morning it came back to me; the terrible absence of my daughter and hollowness of those days without her. And all I could do then, I remembered this morning, was swim; the only way I could stop myself from thinking was to thrash my body up and down the pool, repeatedly, until I was exhausted. I would go almost every day, in my lunch hour or on my way to work after Dylan’s bus had picked him up. Quite often I would swim a mile before work. This was the only way, it seemed, that I could cope.

Six months later my back broke down catastrophically. One day, out of the blue, I could hardly stand. My back and shoulders and neck were knotted and inflamed with pain; the physical demand on my body of the months of fierce swimming had stopped me in my tracks. And so this morning I made a link between these things; the frantic swimming when my daughter left unexpectedly and my determined walking when Dylan left as planned. Perhaps, I thought, this is my way of dealing with loss: submerged, physical, dogged?

pull buoy 008Only now, after years of recovery, am I returning, cautiously, to the pool. This time, I have promised myself, I will not be so foolish. I have something called a pull buoy to slow me down and protect my back. I promised myself, this morning, that I will take care of my burning feet now too. I will rest. I will use ice. I will not be afraid to face loss sitting down.