The Emptying Nest: autism and leaving home

Renishaw Hall

Renishaw Hall

The start of the academic year can signal a new phase of life for parents as well as 18 year olds; over the last few years I have watched my fifty-something friends learn to cope as their sons and daughters depart for university. Empty nest syndrome, I claimed, was one thing I would be spared.

Although I try to offer Dylan age-appropriate opportunities, the nature of his disability affects the timing of key milestones. For many years I was determined that Dylan would experience being away from home in the same way his non-autistic peers leave for university. I discovered, however, that it is virtually impossible to access funding for this; residential places tend to be associated with crisis rather than choice. Dylan therefore continued to live at home after he left school and I avoided the challenge of an empty nest.

26 years

Renishaw Hall

Renishaw Hall

As it happened, by the time Dylan left school I was glad he wasn’t going away.  Although Dylan’s chronological age was 19, developmentally he was around five years old (I reflect a little more on the gap between chronological and developmental age here). Very few children are sent away from home at such an age and those who are often report painful memories of their early separation from family. My instinct was that Dylan needed longer at home.

I was aware, however, that I couldn’t look after Dylan forever; we are on reverse physical trajectories and caring for Dylan alone was becoming increasingly difficult. I have always believed that 26 is the age we tip from child to adult, leaving behind the experimental years for something more settled; as Dylan reaching this age would coincide with my retirement it seemed an appropriate year for me to set as a watershed for Dylan leaving home. I knew this could only be aspirational – some autistic adults continue to live with their parents for much longer – but it would give us something to prepare for, practically and emotionally. There wouldn’t, I told myself, be any sudden emptying of the nest.

Sudden absence

Renishaw Hall

Renishaw Hall

It is natural for parents of disabled children to feel protective but I have perhaps been more inclined to this because of my experience with my daughter. While I might not have had to face an empty nest I have had to cope with sudden absence. When my daughter was 14 she failed to return after a routine access visit to her father; for the next year I didn’t have any contact with my daughter or know anything about her life or how she was. The only information I received was through my solicitor’s communication with my ex-husband’s solicitor; the details are a case study in how not to co-parent a child following divorce. That story is not for here; this week, however, I made a link between my expectations about Dylan’s future and my daughter’s departure. To draw this connection I need to reflect a little more on my daughter’s sudden absence.

The prodigal

Wyming Valley

Wyming Brook Valley

My daughter would be 16 before I saw her again. By the time her father and I had slugged things out through the courts she was settled in a new school and country. Although I hadn’t wanted her to leave, in time I adjusted to her being elsewhere. Nothing would ever make Dylan or I as happy as having her home but eventually we embraced the gains as well as the losses of living on our own. Dylan and I drew closer and he benefitted from having more of my time, attention and support than he would otherwise have received. When my daughter decided to resume her schooling in England and returned to live with us, we all struggled; she had got used to a different way of life and in the years she had been gone Dylan and I had got used to our own way.

When my daughter decided to return to Scotland for the final year of schooling I thought it wouldn’t feel as bad as before; this time it was my daughter’s decision rather than one that had been made for her and she was a young adult now, not a child. Still, I suffered; the prodigal had returned only to leave again. How could I have been so careless as to lose a daughter twice? One day, hopefully, I will make better sense of it; for the moment I tell myself that life is complicated and decisions often multi-factorial. As Pascal reminds us: la coeur à ses raisons que la raison ne connaît pas.

Written on the body

Renishaw Hall

Renishaw Hall

If the heart can direct us with its reason then so can other parts of the body. The first time my daughter left, my back broke down catastrophically. After the initial shock at my physical collapse I wasn’t surprised; my back had behaved this way before when I was in deep grief. I have heard it said that the spine represents esteem and that back problems arise when our sense of self is under threat; my daughter’s disappearance certainly undermined my identity as a mother.

I was immobile with pain so decided to see an osteopath. The one who was recommended and who I have seen since is a Hakomi practitioner who, as well as working miracles on my body, offers me alternative ways of thinking. Once my back improved the pain moved into my left jaw; it was so bad I could barely open my mouth. I had extensive medical investigations which revealed nothing. Have you considered that the difficulty with your jaw might be about the blocked communication with your daughter? the osteopath ventured one day. It may be coincidence but after my daughter made contact my jaw healed. When she left the second time my right arm developed a problem which didn’t resolve until I’d learned to live alone again (without my right hand daughter).

Bolton Abbey

Bolton Abbey

Last year I developed a left shoulder problem. At first I assumed this was an injury I had picked up in the gym (showing Dylan how to use kit I didn’t know how to use myself) but the osteopath offered an alternative reading: that shoulder might not improve until you can put down your shield. I had been fighting for provision for Dylan for so long I was battle-weary and bowing under the weight of my shield, she suggested.

In the weeks since I heard that Dylan’s funding has been approved the ache in my left shoulder has eased. This week, however, I complained to the osteopath: I’ve had a terrible acid stomach for days. I don’t understand why, I told her, I don’t usually have stomach problems. Perhaps there’s something in your life you’re finding hard to digest right now, she replied.

Empty or emptying?

My daughter in a tree on the  Isle of Skye, 2009

My daughter in a tree on the Isle of Skye, 2009

During the last four years I’ve sometimes felt less than sympathetic towards parents with empty nest syndrome; they have had the satisfaction of supporting their sons and daughters to a planned departure at 18. What was there to mourn? With Dylan still around, and having already coped with my daughter’s absence, I would be spared the dazed emptiness I saw in the faces of friends and colleagues who had waved their children off, I told myself.

My stomach, however, may be telling me something else. Last week my daughter visited to say goodbye before she leaves for university in France. I was surprised by my sense of loss; although we had spent the last four years learning to live apart there was something different about our leave-taking this time. After I dropped her off at the railway station at the end of the visit I sat in the car park and cried; this, I thought to myself, must be the empty nest.

Wedding meadow 015

Harper Lees, Hathersage

Perhaps when my daughter is safely settled in her new life I’ll start to relax. It’s possible, however, that the thing that’s hard to digest is not my daughter leaving but my son. Given changes to Dylan’s support needs, funding for residential care has now been approved. I know this makes sense; I am struggling to keep us both safe during ‘incidents’ (though there have been far fewer since the introduction of a low-sugar diet) and can’t offer the level of support Dylan needs to access the community. But when Dylan is his gentle self it is hard to accept the need for something I had thought wouldn’t happen until he was 26. My daughter had launched herself from the nest but Dylan would need a push; being left with an empty nest is one thing, emptying it myself quite another.

Community

Shakespeare's Church, Stratford-Upon-Avon

Shakespeare’s Church, Stratford-Upon-Avon

So I have been trying to digest the implications of this and figure out what is best for Dylan. I am well-supported; Dylan’s social worker, health care professionals, and his day and respite service are all in regular contact. The sense of community around us will make a difference to our capacity to manage the decision-making process I’m sure. Dylan and I have visited settings and drawn up a shortlist of providers. We are now at the point where a decision has to be made about whether or not to take one of these forward. I have been prevaricating; on good days I can see no reason why Dylan can’t continue to live at home but on difficult days I am resigned to him leaving, like his sister, suddenly and earlier than planned.

The blog community, I have discovered, can offer practical and emotional support to its members like any community. The other day I was reading the latest post from Juniper Hill Farms, a community setting in the US. The post reflects on communal living and some of the issues that can arise in relation to food choices and responsibility to others. As I was reading the post I was reminded of the benefits of communal living and of the opportunities for learning and development which such settings present. I could, I reflected, consider a residential place an opportunity for Dylan rather than a loss.

Roseberry Topping, Yorkshire

Roseberry Topping, Yorkshire

The Juniper Hill post also reminded me of the importance of finding ways to involve Dylan in decision-making; a paper cited in the post, on the right of people with developmental disabilities, argues:

The crux of the issue is that interdisciplinary teams (educational or residential) should not make decisions about the client’s future without client input (Bannerman, 1990, p.85)

Dylan at Lea Gardens, Matlock

Dylan at Lea Gardens, Matlock

This is going to be one of the key challenges for me in the days and weeks ahead. What makes the difference to how we feel about change, I think, is choice. When my daughter took control of her life and made her own choices about where to live and study it was easier to accept and support these. Choice may leave a parent crying in a car park but that is easier to stomach than the unease created by decisions made for a child or young person by someone else. The significance of Dylan’s disability makes it more difficult to involve him in decisions about his future but I have some ideas for ways I can try. An empty nest has to be better than emptying the nest and if I can think creatively about Dylan’s voice then, like his sister, he might fly.

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Reference:

Bannerman, D.J., Sheldon, J.B., Sherman, J.A. and Harchik, A.E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties: The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behavior Analysis, Vol. 23, Number 1, Spring 1990, pp 79-89

Images:

All  photographs by Liz

School Holidays And Autism: juggling work and childcare

Earlier this week I was in my office, head down in papers, when I was struck by the silence. Where was everyone? It took a moment for me to realise that the schools had finished for summer and that colleagues with children were taking annual leave. Dylan left school just a year ago; how quickly, I thought to myself, I had lost the rhythms of the school year.

Dylan leaves school 013Last week I listened to an academic on the radio arguing that school holidays should be spread more evenly across the year because the free meals provided by schools are critical for some families; new research indicates that children from the poorest backgrounds may not get enough to eat during the long summer holiday. Educational arguments for adjusting school holidays have also been made; pupil regression, it is suggested, would be lessened if the summer break was shorter.

For autistic children, for whom routine and structure are key, the summer holiday can also be  challenging. Dylan was lucky enough to attend a National Autistic Society school where the calendar had been designed to take this into account; holidays were spread across the year so that pupils did not have a long break from school. So while the vast majority of schools in England are already closed for the summer, this time last year Dylan’s final school year had not yet ended.

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summer schedules 009It doesn’t surprise me that an adjustment to the school year for autistic children could benefit  children more generally; it is often noted that good practice for pupils with Special Educational Needs is good practice for all. As Dylan’s school was unique in its approach, however, his alternative calendar was not without problems; having children whose school holidays were different presented challenges when taking vacations, for example, and there were significant  implications for me as a working mother.

If you are a parent of a disabled child school holidays can be difficult, especially if you are single. Working in the education sector I am fortunate to be able to take leave during the summer. School holidays at other times of year, however, were always problematic for me; half term break can be tricky for any working parent but a two week half term holiday (to allow for Dylan’s shorter summer) was a nightmare. In the silence of the office this week I remembered how difficult it had been to manage school holidays; for all the difficulties I had encountered since Dylan left school, I was glad that I no longer faced that particular challenge.

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Brittany 13 084Part of the challenge for working parents of disabled children is the lack of childcare. Apart from attending a play scheme organised by a parent support group, Dylan was looked after in the home by my mother or a childminder during holidays. There were no camps, social organisations or summer activities which Dylan could attend. My experience may not be atypical; a 2013 survey of summer holiday childcare for disabled children (reported in Waving Not Drowning, a newsletter for carers and parents of disabled children who work or wish to work) found that most parents used care provided by a friend or family member. At the start of the summer holidays many families reported that they had yet to find care or had only tentative arrangements for the summer:

What resonates from the responses is how piecemeal, precarious, expensive and stressful cobbling together the summer provision is for many parents of disabled children. (Waving not Drowning, Autumn 2013)

The survey reported cases of parents having to leave their jobs because of summer care difficulties as well as changing hours, taking unpaid leave and working from home. There were also reports of family and mental health breakdown as a result of the stress of trying to arrange summer childcare. The Waving not Drowning report concludes:

Clearly lots of difficult, individual compromises are being made to survive the challenging summer holiday period and at considerable expense.

Brittany 13 086The WND survey of summer childcare focuses on the needs of the parents of disabled children. Appropriate child care is not only in the interests of parents, however; the home is not an easy environment for children who require specialist provision. I don’t have rebus symbols and timetables displayed around the house (though there are some). I haven’t got a ball pool, snoezelen, playground or even a garden. The home has flashpoints and hazards. Spending three or four weeks in this environment during the summer is not ideal for Dylan.

In the absence of appropriate holiday provision, however, parents of autistic children and young adults do the best they can to manage the summer holidays. When my children were small I would plan a diet of summer activities, balancing days aimed at my daughter’s interests with days based on Dylan’s needs. This was challenging but it was key to managing the school holidays. When my daughter outgrew my summer schedules I went on designing them for Dylan. Because Dylan’s interests are, for the most part, the same now as when he and my daughter were young, I have spent nearly 20 years doing the sorts of things parents usually get to do only briefly; my summers are still full of zoos, adventure playgrounds, museums, parks and sandcastles.

My summer schedules always included a mix of the tried and tested and the new. Trips that proved particularly popular made a repeat appearance the following year. Sometimes there was a theme; in 2011 for example the focus was ‘caves’ (I’d noticed Dylan was attracted by the darkness and acoustics). That summer the schedule included Cresswell Crags, Castleton and a visit to a lead mine.

Such schedules helped Dylan to manage a period of time which he would otherwise have found challenging. As well as benefitting Dylan, however, they supported me; I could get up in the morning, check the schedule and get on with the day. I found this helpful; no matter how difficult the previous day may have been, the schedule kept me focused. This is important given that, living with autism, there will always be days which challenge. It is easy in the aftermath of a difficult experience to stay home rather than access the community. However, when falling off a bicycle you have to get back on and a summer schedule enabled me to do this; it was a scaffold for Dylan and a safety net for me.

Summer 2013

Summer 2013

A schedule can only ever be aspirational however: in the last three summers there were days which didn’t happen. Some of the aborted activities were pulled through to the following year (and sometimes still didn’t happen). I’m the sort of person who makes lists but I know that sometimes I have to be flexible and let them go; a summer schedule must never become a tyrant.

This year I am working hard at letting go. If you’ve been following this blog you’ll know that Dylan has been unsettled recently. Everyone involved in his care is trying to work out what is triggering Dylan’s behaviour but as yet we have not been able to fathom it. As Dylan is no longer at school there is no need for a summer schedule this year (his day centre is open all year). Because he has been so unsettled, however, I thought it might help to do some of the things we have done in the past. I therefore drew up a plan for Dylan which included some time at his day centre, some time with me and a summer holiday. Dylan’s social worker expressed concern about my plans to support Dylan alone and to travel to France but I was optimistic; I will get Dylan on a summer schedule, I thought to myself; that will settle him.

Summer 2014

Summer 2014

This week, however, I have accepted that it isn’t wise to travel this summer and have cancelled our holiday; how short-lived my joy at last year’s trip to France turned out to be (you can read about that here). I should only ever make plans I am prepared to break, I tell myself. So I have redrafted the summer schedule to include some less ambitious days at the seaside; there will, hopefully, be other holidays in France. Who knows, though, what the future holds: these recent events remind me to live each opportunity as if it is the last (though on a schedule, naturally).

Happy summer!

Seagull in St Malo

 

Reference:

Waving Not Drowning: Newsletter (Issue 37, Autumn 2013)

All images taken by Liz (the seaside photographs taken while on holiday in Brittany, August 2013).

 

Autism And Alcohol: reflections on an anniversary

The Old Horns, Bradfield

I often mention pubs in my posts about living with autism. Perhaps I should clarify: Dylan’s drink is a pint of blackcurrant cordial made with tap water and served with ice and a straw. Dylan won’t touch anything with bubbles, or even a barely perceptible fizz, nor will he drink anything which is warm or tastes bitter. This leaves only water and non-carbonated soft drinks. As there are also rules about juice (no bits, cloudiness or tropical fruits) Dylan is limited to apple juice at home and blackcurrant when he’s out. There is no danger that he will ever be drunk or addicted to coca cola.

Dylan’s interest in pubs is, I think, primarily social. He enjoys the ambience of a pub garden in summer and an open fire in winter. He likes the quiet hum of voices and the sudden bursts of laughter, the activity at the bar and background music. He might not want to take part in conversation but he likes listening in. While my daughter lived with us Dylan witnessed language as a backdrop to family life but since she moved away Dylan and I often fall to companionable silence; going to the pub satisfies the need we both have to be exposed to language.

When we go to the pub I usually order a lime & soda for myself. It’s taken time for me to appreciate – six years in fact – but it tastes good. Although these days I enjoy our pub visits it wasn’t always the case. In fact for a while I avoided them. In England the one thing you can bank on, town or country, is a pub (sometimes several in quick succession). Imagine the effort, then, to cross the road or look away. But I couldn’t trust myself. Not at first.

Alcohol and Belonging

The oldest pub in Sheffield

The Old Queen’s Head, Sheffield

My 18 year old daughter is due to go to University this year. A gifted linguist, she plans to study Spanish in France. I spent a year abroad as an undergraduate but I was older than she is, it was an English-speaking country and I had the support of a UK institution. I understand that my daughter wants to challenge herself by not just learning a language, but learning through it: still, part of me is anxious about her leaving.

She telephoned recently (she lives with her dad) to tell me she had found herself a summer job using her languages. Great I replied, remembering how I had spent the summer between school and university working in a hotel. My enthusiasm waned, however, when she revealed more; the job, it transpired, was in Morocco. Haven’t you got enough to look forward to? I asked her. Isn’t going to live in France adventure enough? In the event she decided not to take the job: right opportunity, wrong time she concluded.

Afterwards I asked myself why I had felt so anxious about the proposal. I had been a bit off-the-page with my own life after all. She’ll fall in love! a colleague had exclaimed when I mentioned my daughter’s plan. She’ll not get to France! I suspect it was this which led me to reflect on how life-changing the summer after leaving school can be.

My memory of the time is vivid 35 years on. Plunged into double shifts at a city hotel I discovered there were new rules to follow (and break). I was on the bottom rung covering leave: I had to be chambermaid, chef’s assistant, waitress and barmaid. Nothing had prepared me for this; without structure or sense I needed a role model. My older sister – the hotel manager – had employed me and that summer she mesmerised me; feared but fair, she commanded loyalty and respect.

My sister was also hardly ever without a drink and cigarette. She smoked Dunhill and drank vodka; in her hands these tricks of the trade became impossibly glamorous. At the end of my first week I queued outside her office for my pay packet. As I signed her ledger she asked whether I’d like to join her for a drink in the bar. At last, I felt as if I belonged. By the time I left for university I was a regular drinker with a pack a day habit.

Alcohol and Anxiety

DSCF1007

Dylan Thomas’ pub, Laugharne

Arriving at university I discovered that my newly-acquired habits eased the anxiety of making friends. When I started writing I found they helped with that too; drafts of a poem became associated with endless drinks and cigarettes. As a poet I was able to embrace smoking and drinking as writerly adornment. This was also useful as smokescreen; alcohol can be an effective way of controlling nerves and in some professions (among classical musicians for example) is commonly used to enhance performance. A drink before a poetry reading, I found, calmed me.

I didn’t reflect, at the time, on my use of alcohol. I certainly didn’t think of it as unusual or consider it a problem. Drinking and smoking were part of an identity I had constructed; this was about being young, free and creative. I don’t think it ever occurred to me that I might be using it to assuage anxiety or relieve stress. Now, having lived alongside Dylan, I would say that he is at the extreme end of a spectrum of anxiety from which many of us suffer. I have never been diagnosed with autism or anxiety but perhaps a proneness to using alcohol is a risk for those with such traits. Maybe Dylan’s anxiety appears so great because he doesn’t control it with the methods which others habitually use.

Alcohol as Anaesthetic

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Waggon and Horses, Langsett

While my relationship with alcohol at university was playful it would quickly become serious. My professional and creative life often brought me into contact with other addictions. It goes with the territory, I told myself. One boyfriend (let’s call him Hans) was diagnosed with alcoholism in his early 30s. With a respectable job it was possible to think that Hans lived clean – at least on 19 days out of every 21. The remaining 48 hours would see Hans bingeing in one of the pubs from which he had not yet been barred. The difficulty for me was accepting those 24 hours as reality not aberration; because they were such a small proportion of our overall time together, it took me a while to realise that the binge was as much a part of Hans as the other 19 days.

Hans tried to stop drinking one summer. I wasn’t sure whether I should stop too, to support him, but my GP observed: you don’t have the drink problem, your boyfriend does. Hans was doing well so we decided to take a holiday in Germany where he had relatives. One day I suggested we visit Dachau. At the end of a long day’s visit, arriving back in Munich, Hans headed straight for a Biergarten and ordered a ‘mass weizen’: a large glass of beer. I didn’t understand at the time why Hans ‘slipped up’ (as he put it) that day. Later, though, I realised that in the face of horror he had needed to anaesthetise himself. The incident made me realise how difficult the road to recovery is.

The Cricketers

Soon after I would meet a recovering gambler (let’s call him Ash). Two things he told me stay with me. The first is that a gambler needs to place larger and larger bets as the risk involved in losing (or winning) smaller amounts no longer produces an adrenaline rush. This is the other side of the anaesthetic coin; addictive behaviour because you feel too little rather than too much. The second is of Ash’s grandfather (who also liked a flutter) at the kitchen table one day, palms turned up, fingers spread wide: All gone, he said. It’s all gone. That sense of loss is something Ash would often refer to: the emptiness of losing everything (money, job, relationship) to addiction.

What impressed me about Ash was his strength; we would go regularly to the races but he never placed a bet himself. Lots of people start gambling, he observed, but few are able to stop. Recovery was the point, not the addiction. Later, one of my landlords would make the same claim (in relation to mental illness): he had been sectioned and spent time in an institution. In order to get out, he told me, a doctor had certified him sane. Has anyone ever certified you sane? he asked.

Recovering (from alcohol, gambling or mental illness) was increasingly attractive. I had quit smoking and drinking while I was pregnant in 1985 but after the baby died I, like Hans, had discovered alcohol as anaesthetic and resumed old habits. In the 90s I had another chance to quit when I was pregnant again. Within months of my daughter being born, however, Dylan was diagnosed autistic. Again I resumed drinking and smoking, this time heavier than before. The summer I left school I had used alcohol to belong. At university I used it as mask for my anxiety. Later I used it to numb myself. Now I would discover the most insidious use of all.

Alcohol and Autism

DSCF1435

The Ranmoor

Organising child care  is difficult for parents of small children. In the early years life can feel like a never ending night feed. If you have family or willing friends then evenings out can be arranged, though they tend to become planned rather than spontaneous happenings (which, when the time comes, parents may be too tired to enjoy). If your child is autistic, however, all of these challenges are greater; it is more difficult to find someone to babysit and considerably less likely that you will have the energy for a night out. Furthermore, these difficulties can increase rather than lessen as your child gets older; while my mum was prepared to look after Dylan when he was little, she was less confident as he got older.

I remember feeling hard done by, when Dylan was younger, if my husband and I couldn’t get to an event or had to decline a social invitation. In time, however, staying home became easier and less stressful. While this began as a practical response to circumstance, declining social events presented itself as preferable once we’d established a routine of relaxing at home. Alcohol – a flexible and reliable reward – quite naturally became part of this routine.

The need to spend more than usual amounts of time at home can encourage a gradual increase in the routine use of alcohol. While this was never dramatic, given the context of caring responsibilities, the cumulative effect was significant. Reference is often made to the ‘invisibility’ of alcoholism among steady users in white collar professions; those people who never appear drunk or incapacitated by alcohol because they have become accustomed to consuming excessive units each week as part of their working life. I suspect that some carers may find themselves in a similar position, albeit via rather different routines.

The Freight Train

Kent August 2012 170

Somewhere in Kent

Perhaps I am painting it darker than it really was. I never poured a drink before 6pm in the evening. I rarely drank more than three quarters of a bottle of wine. I was never drunk, ill or incapable in the evenings or the next day (though I was frequently tired). I never thought of my relationship with alcohol as problematic and I would certainly never have called myself an alcoholic. In fact my problem, in so far as I admitted one, was not alcohol but nicotine.

I had tried everything I could think of to quit. Patches (zero impact). Chewing gum (my skin broke out). Zyban (four unbearable days without sleep). Hypnotism (I was awake throughout). Self-help books (I was too cynical). The Russian mystic in Brookline, Massachusetts (he was good but I wasn’t).

I never meant to give up alcohol but in the end it seemed the only way to stop the freight train. ‘The freight train’ was my description of a phenomenon I would experience roughly once a month when I would spend the day flaked out on the sofa feeling extraordinarily tired. Only with huge effort and will could I attend to the bare minimum (providing food and ensuring Dylan was safe). It was, I used to say, as if I’ve been hit by a freight train. The impact was comparable to a day off sick. I now think that this was probably the cumulative effect of regular daily alcohol consumption; never having so much as to be incapable, but topping up and topping up until I was just dog tired. In the end I couldn’t bear one more hit; I had to get off those tracks.

First Summer

The Norfolk Arms, Ringinglow

19th July 2008. School holidays just beginning. My daughter in Scotland for the summer with her dad. Freight train day. Was this exhaustion at the end of a busy semester? Or me succumbing to the space to relax? I was tired of excuses. I remember my slow walk to the kitchen. I poured a bottle of wine down the sink (I can still visualise the red swirl and hear the glug glug) then threw a packet of Marlborough Lights (18 left) in the bin. Not drinking, I told myself, could be part of stopping smoking. Perhaps my attempts to quit cigarettes were failing because alcohol weakened my resolve. I would drink again, I promised myself, when I’d conquered the nicotine.

And so I embarked on my first summer. It helped that my daughter was away; Dylan couldn’t ask me questions or enquire how I was feeling. I was glad of that: I could only do this in complete silence. Pubs were out of bounds. I declined invitations to events I thought might be tricky. I turned down dates with men who smoked and drank. I didn’t trust myself; I might reach for their packet or say oh go on then if told to have a ‘proper drink’. That summer was hard. A family holiday in Cornwall at the end of it was probably as close as I came to failing. But I did it. I coped. I had discovered the Will Power Road.

Recovery

The Moon, Stoney Middleton

The Moon, Stoney Middleton

Six years later I am comfortable in pubs. I don’t falter or flinch. I trust myself. I haven’t reintroduced alcohol as I thought I would; I tell myself one day I will but I doubt this. What I noticed, a month after my double quit, was that I felt better for not drinking. I’m better for not smoking too but the effects of not drinking are more obvious. No more freight trains. More energy. Clear head.

I still don’t use the term alcoholic. ‘Wine’ Dylan says sometimes, pointing at the vinegar bottles in the fridge or to a display in our local shop. He didn’t have many words when he was young but this was one of them. I might tell myself that I didn’t have a drink problem – wasn’t an alcoholic – but my son’s quirky core vocabulary ought to raise at least one of my eyebrows.

Since I’ve kept this blog I’ve encountered a number of people who write about the impact of alcoholism and recovery on their life; more than any other, these are the blogs which move me. They have also helped me to reflect on my own experience and the possible links between alcohol and autism. In this post I have suggested that some people may use alcohol to manage conditions associated with autistic spectrum condition such as anxiety or the need for control. I have also speculated that parents and carers may be vulnerable to increased routine use of alcohol due to the emotional and practical circumstances of caring. Hopefully I have also, however, managed to convey my admiration for those who confront and defeat an addictive relationship. As Maya Angelou says:

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.

The Sir William, Grindleford

The Sir William, Grindleford

Postscript:

This post has been a bit different from my usual pieces, glancing only tangentially at autism. Thank you for reading and for supporting my 6th anniversary celebration 🙂


Respite Or Short Break: what does it matter?

Bridlington retreat 026If someone were to ask what single thing makes the most difference to my life without hesitation I would say respite. Well actually I might hesitate a bit but only over terminology: there has been a move in the last few years away from the term respite, which is felt to have negative connotations, in favour of short break.

Whatever we call it I’m very glad of it. For some years Dylan has spent one night a week and occasional weekends with a care provider. Recently I decided that it was time to trial a slightly longer period away from home. Last week, therefore, Dylan had five sleepovers while I had my first significant break from caring in 20 years. In this post I reflect on the value of short breaks for carers while in a linked post I consider some of the challenges involved in accessing short break provision.

What we mean when we talk about respite short breaks

I didn’t know about this shift in terminology when my local Council awarded families with a disabled child a one-off short break payment last year. As far as I was concerned a ‘short break’ was something I had with Dylan whereas ‘respite’ was something I had alone; one was a break from our daily life and the other was a break from each other.

Knaresborough 045Surprised by the payment but pleased to receive it I provided details, as requested, of what I would do with the grant: I would take Dylan to Knaresborough to see Mother Shipton’s Cave and for a trip by steam train. We had a lovely time but a man from the Council later explained to me that the short break payments were aimed at carers, not the person with the disability. That money was for you he told me, barely hiding his amusement: it was for you to have a break, not Dylan.

I understand the reason for the change in language; the word ‘respite’ problematises the disabled person by suggesting that the carer requires space from a burdensome situation. It also implies that the benefits are only for the carer. Neither of these are the case. ‘Short break’ may be more neutral but it is also unsatisfactory because it doesn’t indicate what the break is from. In the absence of an alternative, however, I will use the term short break here to refer to breaks for carers from which the disabled person also benefits.

Spending time

I know families who don’t feel the need for short break provision. In some cases this is because they already have access to informal support from relatives and sometimes it is because parents don’t want to be away from their child. For other families, however, short breaks are invaluable; in my case they have enabled me to continue to care for Dylan at home.

When I first became a single parent Dylan’s overnight breaks were essential as I taught an evening class; while my mother was able to look after my daughter, caring for both children became increasingly difficult. In time I was able to reorganise my teaching so that I no longer worked outside school hours though I continued to use Dylan’s short breaks to meet workplace demands at certain times of year. For some families, then, short break provision enables employment.

Maintaining a job or career is not just about financial independence; it also contributes to my sense of self. In this way, short breaks help to nourish the parts of my identity which are not solely about being a carer. They also provide space for my identity as the parent of a non-disabled child; while my daughter lived with us she had first claim on this time. Enabling parents to give siblings the attention they need is perhaps one of the key benefits of short break provision.

When time away from caring is limited it encourages careful reflection on priorities. I have always liked to spend short breaks doing things which Dylan has no interest in (I suppose this removes any guilt that he is being excluded from something he would enjoy) which would typically involve the arts or sports. There is a tendency, when time is limited, to make every minute count. This can create its own stress however: I am often exhausted when Dylan returns home, having rushed back from somewhere myself (during weekend breaks I have made regular trips to London and even Paris). I can also feel frustrated at ‘wasted’ time; tolerance for a bad movie is low when doing that meant not doing something else. Recently I’ve discovered that one of the best ways of spending time is to simply stay home and enjoy the space (a sign, no doubt, that I’m getting old).

Learning to let go

I remember how reluctant I was, initially, to accept short break provision. For parents, such support can feel like an admission of failure or an abnegation of responsibility. It can also provoke feelings of guilt as well as anxiety about whether your child is being cared for as you would want. My conversations with other parents lead me to believe this is entirely natural and part of the process of learning to let go of a child who has additional needs.

Although I know that Dylan and I benefit from short breaks the wrench at separation never ends. A single night, or even a weekend, is not long enough to switch off the alert of the carer brain. If I dose off on the sofa in the evening I wake with a start, my first thought where is Dylan? then the panic that I’ve slipped asleep while he is still awake and the race upstairs to check on him. On short break nights, my second waking thought reminds me that I am alone in the house; I can relax. But this state of constant alert doesn’t subside. I live my life this way; antennae listening out through the night, in case he wakes and needs me. And as well as the fundamental caring of the brain there is the mother’s heart which, sensing an absence, aches its remembrance.

Recently I have realised that it is not only me who has had to learn to let go; Dylan also has to accept change. I wanted Dylan to spend a longer period away last week as part of what I hope will be a phased transition to him eventually leaving home. I don’t want this to happen yet but when the time comes I don’t want Dylan to move suddenly from living at home to living elsewhere. My aim, therefore, is to gradually increase Dylan’s overnight breaks so that the balance shifts away from me. Although I am not a fan of Personal Budgets I have to acknowledge that it is thanks to this system that I was able to organise such a break for Dylan. While the standard care package offered to children up to 18 is excellent it isn’t flexible in that you cannot change or save days in order to access short break provision at different times or for alternative periods. A Personal Budget can, however, be used to fund a longer break, providing it is approved as part of a Support Plan.

Making self matter

How long before I have no right to call myself a poet? I asked a friend recently. I haven’t managed to write anything new for months. It may be hard for me to consistently live this but writing poetry is the most important thing I do for me: it is the critical part of my identity. Writing poetry makes a difference to who I am – it is what matters. It is perhaps strange, then, that the description I gave of the things I spend my short break time doing doesn’t include writing poetry.

The reason I don’t use Dylan’s short breaks for writing poetry is that they are overnight breaks and I can only write in the mornings. If I work on a poem after 2pm I usually ruin it. Since keeping this blog I have discovered I can write prose later in the day, but the only thing I can do with a poem is a bit of editing if I’m lucky. As I’m at work or caring for Dylan in the mornings, getting any writing done means being up at dawn. So when Dylan’s short break provider agreed to support Dylan for a longer break I knew that what I wanted to do with the time, more than anything else, was write.

I would rent a cottage, I decided, within a two hour journey from home (so that I could get back easily if needed). I would choose the time and location to fit in with a poetry festival so that I could socialise if I wished. As the main aim was to write I would choose a quiet location. I would allow myself a laptop for typing up drafts but prose and social media were banned. And, at a girlfriend’s suggestion, I would take my bike.

Going solo

Bridlington retreat 018I don’t use my bike often because I am usually with Dylan who needs to ride tandem. Taking my bike to the cottage was not something I would have thought of if Caroline hadn’t planned to join me for an afternoon’s cycling while I was there. In the event it didn’t work out for us to meet up but I was enormously glad that we’d talked about it seriously enough for me to sort myself out with a bike rack and take my Tantrum with me.

It had been touch and go, though, whether I would even get to the cottage. On the morning of departure, not having packed or found a bike rack I was competent to fit, I temporarily lost confidence in the trip. I’d tried to prepare Dylan as best I could for what was to happen but as I put him on the bus for his day care centre that morning I could tell by a look in his eyes there had been a misunderstanding. Dylan had his trundle case with him as he was going to be away for longer. I suddenly realised that he had assumed that the suitcase meant we were going on holiday together as we had recently. Indeed, when I returned to the house I found that Dylan had put steam train leaflets on my desk. And so I burst into tears convinced I couldn’t leave him with such disappointment.

Later that morning I remembered that I had persisted with overnight breaks in the past when Dylan had been reluctant to go. I reminded myself that it wasn’t so surprising that Dylan would want to be with me; of course he would prefer an easy life with his indulgent mother or to be in his own space. This, I realised, reinforced the need to go ahead; Dylan would have to be independent from me one day and spending a longer period of time away from me now could help him to prepare emotionally. I ticked myself off for the suitcase mistake and went to look for a bike rack.

In praise of short longer breaks

Bridlington retreat 027

South Cliffs, Bridlington

And so I set off for the Yorkshire coast on a sunny Wednesday, my bike strapped to the back of my car and my face puffy from crying. I was conscious of Dylan not being in his seat in the back. I found myself saying ‘Dylan would like that’ or ‘I wonder what Dylan is doing’. At some point though I put on a U2 CD which Dylan won’t let me play: may as well make the most of it.

When I stopped at a pub for a meal en route I automatically ordered for Dylan as well. Arriving at the cottage I felt a twinge of guilt when I saw that I had booked into Dylan’s dream world (sand, sea, barn owls and nearby swimming pool). As I chatted to the owner that evening about his autistic son (what were the odds on that I wondered?) I realised how impossible it was to stop being a carer; I might be off-duty but caring for Dylan was part of my identity and I couldn’t drive away from that. I had to hope the poet in me wasn’t easily lost either.

South Landing

South Landing

The first night I did the dosing on the sofa thing – woke and sat bolt-upright trying to figure out whether I’d put Dylan to bed or not – but within 48 hours I’d managed to embrace the joy of pleasing myself. The moment I felt my freedom from responsibility came the next evening while cycling into the local village to post a letter. This might seem a small thing but slipping out to buy a pint of milk or catch the post is not something I would normally be able to do. I would have to take Dylan with me, which would involve interrupting his evening routine, getting him ready, explaining what was to happen and hoping that he would cope (such a brief outing would be  frustrating for Dylan). This is the sort of scenario that I would avoid by always planning ahead and ensuring that we have everything we need at home and I have done all urgent jobs. Cycling impromptu at nine o’clock at night to post a letter felt absolutely joyous.

Bridlington retreat 038

Flamborough Old Lighthouse

Though the jewel in my week was undoubtedly the four hours uninterrupted writing each day, I discovered there was no end to the benefits of not caring. There were irregular meal times. Lane swimming. No Disney. Cherries to myself. Poem breaks during cycle trips. Waiting half an hour (quietly) for the barn owl to return from hunting. Leaving the cottage door unlocked. Having my papers spread all over the table (Dylan constantly tidies my desk). Lingering over coffee. Browsing antiques in the Georgian Tea Rooms. Sitting on the pier. Just sitting. Watching the gannets at Bempton Cliffs. Staying out late on the bike, into the evening, hungry and tired.

Towards the end of my week away I cycled down to the post box again. This envelope was addressed to Dylan at his short break home. I calculated it would just reach him before I got back. I’d never been away from Dylan long enough to send him something through the post. Was it silly of me? How would he know who the card was from? I chose a leaf-cutter ant. No one but me, I thought, knew that he liked them; surely he would understand the card was from mummy? As I dropped it in the post box I realised that Dylan had grown-up; he was at the start of his adult life. It felt like I was at the start of another life too, learning to let go.

 

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I returned home with a draft of a tricky poem I’ve been wanting to write for two years. As I drove back I told myself that I should be glad of this, even if I found things hadn’t gone so well for Dylan. I was delighted to find, however, that he had been fine; the trundle case, I was told, seemed to have helped him understand his short break would be for longer. Dylan seemed delighted to see me. I gave him the white chocolate footballer I had bought him and later, when he had unpacked, he showed me the card he had stood on his cupboard.

return from brid 001

All images, including a selfie, taken by me.

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

The Frog Prince: autism, poetry and transformation

batdetectorIn a recent post reflecting on the causes of autism I referred to ‘magical thinking’.  By this I mean explanations for disability which aren’t based on scientific rationale or evidence but which acquire narrative status across a cultural group or society. In this post I present four poems which represent a mother’s changing view of autism in the years immediately following diagnosis. The post opens with a poem in which I try to make sense of autism through magical thinking. It then traces critical shifts in my understanding through poems written within the first five years of Dylan’s diagnosis and published in my collection, The Bat Detector.

Responding to my son’s autism through poetry has, I believe, shaped my thinking about disability. Writing a poem is a journey and in the course of it I frequently discover things I wasn’t previously aware of.  Furthermore the act of writing is transformative; I am changed not just by what I have written but through the process of writing itself. In this sense poetry can be considered as epistemology (i.e. a ‘way of knowing’) as well as a form governed by aesthetic and other principles.

Poetry is not, of course, my only way of knowing but it is important to me as a creative approach to thinking about autism. Partly this is because poetry allows me to adopt other voices and perspectives, something I have referred to in a previous post as ‘ethnographic practice’. This can be particularly illuminating as a way of knowing about parenting and disability. In this, of course, it is not unique; researchers also engage with other perspectives. However, poetry also allows us to engage with affective (emotional) material and gives us permission to explore our magical as well as scientific thinking. This post considers the contribution which such an epistemological approach can make to our understanding of autism.

*

moonIn the poem below I consider magical thinking as an explanation for autism through reference to an English folk belief that boys born on a moonless Monday become ‘idiot children’ (as they were known in the 19th century).  Dylan was born by the sea and that landscape makes an appearance in the poem. In the first section I use female mythology of the moon in the mother’s attempt to gauge her fertility by lunar cycles.  In the second section of the  poem I refer to the baby missing its opportunity to be born while the moon is visible in the sky (by the time Dylan put in an appearance it had gone).

The third and fourth sections of the poem refer to a trip to France the year after Dylan was born (see also this post).  Dylan was 15 months old and beginning to show symptoms of autism though we didn’t realise this at the time. I remember joking to my husband about the full moon shining on Dylan’s cot at night and us laughing about Dylan emptying the cupboards in the holiday home and arranging the pots. We had no idea of the significance of this. The day at Carnac (a megalithic site aligned with the moon) became legendary in our family history because of the severity of Dylan’s crying that day and our inability to calm him. In the final section of the poem I reflect that the lives of mother and son are somehow bound up with and controlled by the moon.

Moonstruck

Mother know’d ’twas no moon, for she asked another woman that had an almanac, as she did whenever a boy was born to her, because of the saying, ‘No moon, no man’ which made her afeard every man-child she had…  Thomas Hardy, The Return of the Native

i.  Moon Dates

I timed my eggs by the moon,
knew that when it bellied in the sky
my linings would break to maddening blood.

There must have been fog over the sea that June –
something to obscure that bony annulet from my view,
to wrench from my miscounting on it

an alternative computation.
I converted lunations to trimesters,
waited, patiently, for a March moon.

ii.  No-Moon Child

Waters lapping at toe and fist, cast out on a hawser,
syllables form, echoing in the stabbing dark:
I will be the moonstruck man you never wanted,

 the boy feared beyond imagined daughters.
The sea heaved, spilling spring tide

from a silver moon, shivering a swatch of light

to fill the emptiness, the silence of my due night.
Tick, tick. Its fullness splintered back to blackness
and the month stitched a no-moon Monday to his cry.

iii.   Afeard

As I set the child to sleep that night in a white cot
beneath the eaves of a manor house in France
I shuddered at the sight of moon

pooling full through un-curtained glass,
said that I had read this could send a person mad.
What lunacies beamed from that stark land

into his dreaming no-moon skull?
What fingers of leaching light softly thread
around my shuttered sleep into his exposed head?

iv.   No Man

The megaliths at Carnac point to the moon.
How he cried that day at those lunate bones
divining time from the sky’s light –

gouged the terrible sight of those stone fingers
(their silent, commanding point) from his eyes,
then emptied cupboards of annular things,

spread cups and saucers, pans and bowls in complex order
across the floor, moved his planets inch by inch into a
mooncalf heaven, mapped his constellation from these stars.

v.   Moon Life

And now, wordless, inhabiting a world as strange
and far away as moon he greets its mad latescence
with howling wails and wakefulness,

meets the coldness of its hoary stare through fingers
spread across the glass shredding silver,
minting slivers of no-moon in the sky.

His life and mine still timed by moon he lives
within the darkened days between its blooming,
breathes in space between its lunatic albescence.

*

Moonstruck is an example of magical thinking about autism in that it locates cause in folk mythology and nature. The philosophy of the poem is that the mother and child are victims of something which was inevitable and for which they were marked out by a force unknown and larger than them.  The mother and child have no power, or ‘agency’, in this process; they will not resist what has happened or attempt any change and, in this respect, there is an acceptance of the autism. However, this is not a positive acceptance; the actors are passive onlookers, constructed as victims.

In the following poem, by contrast, the mother-narrator does not accept her child’s autism. Although the representation of her son is loving, autism is depicted as something ‘other’ to him; it is an alien force which has taken over the child’s body and stolen the son from the mother.  There is no acceptance of autism – rather the mother is resistant to the idea that autism could be part of her child.  However, it is magical resistance she engages in rather than scientific challenge; the rescue narrative she dreams for her son is as romantic as the explanation she offers for his autism. A section of the poem is presented below.

Breath

 ii

When my son was less than two years old –
just before his autism was diagnosed
and my whole world fell apart as the child
I thought he was (and would become)
slipped suddenly away from me,
like the death of someone known, familiar –
I had a dream (or vision) in the night.
As I slept, became aware of someone
watching me – woke to see at the entrance
of my attic room, standing at the top of the stairs,
a blond-haired boy regarding me silently,
wise and sad-eyed. I knew it was my son –
though older (maybe seven or eight).
Then a voice – not his, but in my head,
like Aslan’s:  Wait, be patient, it said,
I have to go away but will come back
to you one day
.  I sat up straight –

anxious, wanting to hold on,
not let him slip away, be gone.
Then a flicker of breath against
my cheek as he disappeared.

That was years ago:  my son is seven now.
Sometimes I turn – try to catch
him at the top of the attic stairs
looking the way I dreamed he would –
try to conjure from his absent eyes
an answer to the patient watch
I’ve kept for his delivery back.

*

Dylan, seven

Dylan, seven

In the opening section of Breath (not included here) the mother-narrator reflects on her previous loss of a daughter through stillbirth. Breath, then, becomes a poem of sudden loss in which children are stolen away; these losses take place overnight when there is permeability between the living and spirit worlds and souls can cross over. In this sense the loss of the son to autism is constructed as an ‘othering’. The absent-eyed child is an imposter who has taken the place of the lost (non-autistic) child who the mother-narrator prefers.  The non-autistic child is constructed as superior not just to the imposter but to the mother; in this poem, it is the lost child who takes the explanatory narrative (‘I have to go away’) and who is charged with responsibility for managing his own return. The mother simply has to wait. This abnegation of maternal responsibility is part of a construction of the mother as passive victim who has to endure magical fate (Moonstruck) and mystical crime (Breath).

all that's left 002

Dylan in his helmet

In the next poem, instead of magical thinking the mother embraces scientific explanation. The poem uses the language and vocabulary of genetics. Through this, the mother  begins to construct herself as part of her son’s autism. This is not a positive involvement however – rather she fears her  potential responsibility for the wider family and future generations.  The poem explores fertility and reproduction and I relished the opportunity to write about menstruation, ovaries and eggs. However in other respects the poem was difficult for me to write. Reference is made to the mother’s new daughter as well as to the daughter who died; this living daughter is seen as the only ‘normal’ child, with both the dead daughter and the autistic son described as carriers of genetic ‘abnormality’. In this, then,  the mother continues to privilege normalcy over diversity.

I wanted to try and capture the reality of being a mother to an autistic toddler – the days when it’s a struggle to keep going until the release of sleep. While I was writing the poem I forced myself to be very detached about Dylan. At the time he had a policeman’s helmet (not a real one) which he insisted on wearing constantly and which makes an appearance in the poem. I don’t know who bought it for Dylan but I’m pretty sure I wouldn’t have. I came to really dislike that helmet.

Monster

The morning brings stench of broken linings,
blood like a butcher’s shop, thick and liver-brown.
Menstruating again – shedding another
of the last surviving eggs
from the store I was born with.

A geneticist assured me once it was all
a bit of a lottery; told me that in every
woman’s cargo of eggs there are some
that are bad – chance statistics of
abnormality or spontaneous abortion.

One of my long-shot eggs grew hardly
human. Today he is a monster on a train,
wearing a helmet. He emits strange shrieks,
makes bizarre grimaces with his face.
Except for providing food

I cannot connect with him today.
This defect cannot be detected
or tracked back, with certainty,
to the egg. But I know the possibilities –
the endless varieties of bad ovum.

Recall how, years ago, the geneticist
talked me through my still-born
daughter’s post-mortem.  The shock of it:
sheer extent of things gone wrong –
impossible – inside her.

I’d held her: committed her to memory,
through unstoppable tears.  She’s beautiful,
she’s so perfect
I’d said. I remember

how the doctor had touched her left foot,
showed me the odd splay of her toes –

said it sometimes indicated things gone wrong.
Later, the confirmation of ugly words:
fixed flexion deformities, syndactyly,
webbing, micrognathia.  It was the egg,
the geneticist said, that failed to divide:

an extra set of chromosomes –
Triploidy Karyotype XXX.
The only thing normal
reported about her: female genitalia
and reproductive system intact.

Now I have another daughter: she is
my bright and bouncing perfect egg.
Today, mourning my losses, feeling
ache and cramp of blood (the odds
on my eggs being good lengthening)

I fear the gift I have bequeathed:
wonder what the clutch of eggs
inside her holds, whether time-bombs
are already ticking, waiting to release
their hair-sprung triggers and go off.

*

Although the language of the post-mortem report is monstrous the mother finds her daughter ‘beautiful’ and ‘perfect’.  While she cannot connect with the monster on a train we are (twice) told that this is her experience ‘today’; the implication is that, as with ‘ordinary’ parenting, there are good days too.  Here, then, there are chinks of light: the mother finds the disabled child beautiful and claims disability as part of her life history.

dailymail.co.ukThe final poem in this post, Frog Prince, captures further change in the mother’s views as the narrator reflects back on herself over a three year period. The trigger for these reflections is the appearance of a frog in the garden. The poem recounts a real incident which offered a way for me to address perceptions of disability; through the narrative of the tadpoles I explore feelings of denial, responsibility and guilt, as well as raising the issue of the ‘invisibility’ of autism and its emotional impact on parents.  By the end of the poem the mother realises she has moved beyond acceptance of autism to celebration of difference: ‘I no longer wish for transformation’, she reflects, ‘would not plant the kiss’.

Frog Prince

A frog visited me this morning –
sat still as brown stone in the rockery,
rain falling on her pointed head.
I assumed, at first, this frog was there by chance,
her appearance not to do with me.
But she bulked big as a fist until I had to admit
it was probably her third summer,
could date her hatching to the year we’d stashed
a greedy harvest upon our bathroom windowsill.

As the spawn crammed in the plastic boxes, jars and pots
grew inky dense, we’d looked on aghast
at the wriggle and bud of tadpoles
sprouting extra limbs, additional heads –
stood by while some grew monstrously
as they fed on the weakened, selected the grotesque.
Witness and accused in this fishy metamorphosis
I’d closed the bathroom door on the alchemy,
tried to ignore my part in it.

But then, the night the comet came,
I’d rushed to wish into transfigured sky  –
one more try for my miracle,
for something to unravel and re-thread
the tangled wires in my son’s head,
for a word, a gesture, a touch of human love
to issue from his perfect lips, his gilded arms.
But tadpole-skulled, head full of frogs,
I’d  imagined, instead, this simplicity –

that my son had grown two heads, no legs,
been eyeless, deaf – that some strange growth,
or absence, had marked him out, made difference clear.
And in this horror I’d turned them out – stumbled in
to the stagger and slosh of stairs, the weeping garden,
stood beneath a tail of light, frogs falling from me,
their mutant bodies sliding through guilty hands.
Next day I watched birds come at dawn,
their derrick heads bobbing, clean-picking the lawn.

The escaped frog that visited today
brought me in a leap of time to realise
that, since her freedom, things were changed.
The difference this – that I no longer wish
for transformation, would not plant the kiss.

*

wildlife-imaging.co.ukLooking back at these four poems years later I can detect the shifts in thinking which I perhaps wasn’t conscious of at the time but which poetry helped me to explore. Mapping models of thinking about disability onto these poems, you could say that the mother moves from ‘primitive’  beliefs about autism (Moonstruck and Breath) through a Medical Model approach (Monster) to a position more akin to that of Neurodiversity (Frog Prince). While parents may not find it helpful, in the aftermath of diagnosis, to think in terms of philosophical models, applying such thinking retrospectively can be illuminating. The practice of writing creates a reflective space which allows us to record our journey through difficult terrain, thus supporting a process of discovery and transformation.

Reference:

Elizabeth Barrett (2005) The Bat Detector, Wrecking Ball Press
Thomas Hardy (1878) The Return of the Native, Penguin Books

Source of images of frog, tadpoles and moon unknown but appreciated.

Poetry And Postmen: a parent’s journey through autism

The_Guardian_12_10_2013The Royal Mail Share Offer in England has meant a lot of coverage in the British Press for Postman Pat. “Pat”  Dylan said to me yesterday, pointing to a picture in my newspaper of a City Trader wearing a Postman Pat costume.

I wouldn’t want to return to the days of Postman Pat. Between the ages of 3 and 11 Dylan’s constant companions were soft toys of Pat and Jess which Dylan would not be parted from; we lived in a loop tape of Pat’s jolly theme tune. I tried to think positively about Dylan’s obsession, imagining that one day he would help deliver letters in an idyllic community where everyone knew and loved him. I bought Pat’s educational videos and used these to encourage Dylan to learn his colours and numbers. I attempted to support Dylan’s communication and basic social skills with Pat games and toys. I did my best to turn Postman Pat into a resource.

Dylan’s fixation on Pat during these years answered a need which would vanish one day as quickly as it had emerged. What I didn’t realise, when the Pat era ended, was that he would be replaced in Dylan’s affections with other characters. We have since moved through a range of total and all-consuming interests, the latest of which is Peter Pan. On days when I am fed up with Peter Pan, I remind myself that this interest will also give way in time to new passions and desires.  I say ‘interest’ rather than ‘obsession’ deliberately: this shift in my language represents the transformation my thinking has undergone in relation to Dylan over the years. This post offers some reflections on that journey.

Being Dylan

carlisle 028Another memory of a postman: I am working from home while Dylan and his younger sister are at day care and my husband is at work.  I’m supposed to be writing a report but my mind keeps wandering to Dylan.  Recently, he has been gathering up his toy cars and lining them bumper to bumper through the house.  He spends hours fussing about the line, making choices about which car goes where and seeming to have a very clear set of rules for the making of the line. Once made, no one can touch or interfere with the line; if a car is accidentally knocked, Dylan cries inconsolably, destroys the rest of the line and flails around in distress. My three year old daughter has started copying him; one day I find her lining the cars up just like him, only her play is accompanied by a commentary: ” black one; you are sad; your wheel is broken blue one.” 

This morning, alone in the house, I fetch the cars. I lie on the kitchen floor. The quarry tiles are hard and I like the way the cars skid as I wheel them into position. I squint under the low chassis of one and at the angles made by another. I try and make sense of their colours and shapes and sizes.  My husband has taken the rubber tyres off the wheels so that Dylan doesn’t swallow them and I notice how the cars make wobbly contact with the floor. I am annoyed by this and try to bend some of them with my teeth. ‘Like Dylan’ I think. 

It is a sunny morning and the back door is slightly open to create a through-draft out onto the patio. I run my line of cars across the kitchen floor then up over a chair and onto the kitchen table, then down again and onto the carpet. I am almost at the patio doors when a noise makes me turn around.  Standing in the doorway watching me, a mix of amusement and concern on his face, is my postman. He is clutching a package that won’t go through the letter flap. He is sorry he says – the door was slightly open. I stand up, still holding half a dozen matchbox cars I haven’t been able to fit into my line. I feel flustered and that I ought to explain.  “They’re not my cars” I say at last. “They’re  my son’s. I’m just checking them.” 

By handling the cars as if they were mine,  by squatting down on the floor as if I were a child and by focusing on the sensory  elements of the play I entered a different realm and a new way of apprehending the world.  Afterwards I wrote the following poem which was included in my second collection,’ The Bat Detector’. I’ve only ever published two poems in Dylan’s imagined voice: this one and another (‘Toe-walking’, in my first collection). Reflecting on these early poems I realise they were part of my process of coming to terms with Dylan’s diagnosis and trying to understand his autism.

Dylan’s Cars

Green vintage (top gone, radiator rough on my tongue).
Daddy took the tyre off.
Spin, spin. Yellow van with springy wheels.
I flick my nails against them, make them spin.
Black cab J219 CYO, big and curvy,
Makes the line messy.
I spin its wheels then slam my arm down, let it go.
Silver tanker with four at the back two at the front:
nice and long (spin spin spin spin)
wheel it up behind the van.
Yellow bus, 8 windows one side, 7 and 2 the other,
3 at the back, 1 at the front. 21.
Only 4 wheels though. Spin, spin.
Number 5:  green racer.
Then the  neee naaa neee naaa
thin white car with blue windows
and a red box on its roof.
Good spinner.
Blue vintage next. White roof, long wheel arches,
tyres missing, front right wheel sticks.
Move it into position (nice and slow).

I squat down, chin on the floor,
so they grow big like mummy’s car
and all the others going past
with spinning wheels and flashing lights
and jumbled bits of people:
eyes, mouth, hands that don’t make sense.
This is my line.
Bumper to bumper,
these are my stuck cars with no drivers,
going nowhere.
Spin, spin.

Writing in Other Voices

Writing in another voice was not something that was new to me; it is common practice among writers and is something I had done as a poet and asked others to do when running writing workshops. One of my favourite exercises is to get students to write from the perspective of another character drawn from an envelope of possibilities. My envelope would typically include characters such as ‘undertaker’, ‘vicar’, ‘prisoner’ or ‘refuse collector’.

lightbulbOne year a student approached me after class to say that she had Asperger’s Syndrome, struggled with empathy, and did not think she would be able to tackle the writing exercise. She had drawn ‘Butcher’ from the envelope which she didn’t want to try. Drawing an alternative from the envelope didn’t seem to help.  In the end I suggested to her that she might be able to apply some of the technical principles we had been talking about in class to an inanimate object rather than another character.  The student agreed to have a go and produced a marvellous piece spoken in the voice of a building she was familiar with.  She went on to produce a series of poems spoken in the voice of objects, a project which proved so rich that the following year I included a number of inanimate objects in my envelope. That  year, however, one of the students wrote on her module evaluation:  “I did not appreciate being asked to be a light bulb, thank you.” 

Writing and Parenting as Ethnography

mocassinsI often refer to the Native American saying about not being able to know another man until you have ‘walked in his moccasins’.  I ask students to take off their shoes and imagine themselves walking in the shoes of another.  This is a bit like method acting where an actor attempts to physically experience some aspects of a role which they are to play. 

This process of inhabiting the life world of someone who you want to understand better also reminds me of ethnographic research. In my discipline of education, ethnography is defined as ‘culture studying’ and is used as a framework  through which to understand groups who might not otherwise be accessible to researchers or whose experience of education is so particular that this up-close approach to research is required.  Ethnographic research requires the researcher to gain privileged access to the community they wish to study. The researcher needs to spend long periods living alongside the group, observing group members and shadowing their experience of the world. The researcher needs to become part of the group and to participate within it, observing the group’s rituals and practices, and showing an understanding of and respect for the group’s values.

The responsibility of the researcher in conducting an ethnographic study, I tell my students, is both to the community  being studied and to the research community itself.  In gaining access to a group the researcher has ethical responsibilities to members of the group.  However, the  researcher also has a responsibility to return from the community which she has studied and report back to the wider research world, sharing and interpreting the life world of the culture-sharing community for the benefit of others. This requires the researcher to enter into the world of the community she is studying sufficiently to understand it as if she were an insider, but to retain enough detachment from the community in order to report back to the world as a privileged outsider. 

I sometimes think of writing as ethnographic practice, particularly when I am trying to write in a voice other than my own or encourage my students to write. I also sometimes think of parenting Dylan as a form of ethnography; many of the key features of ethnography I suggest here could equally be applied to caring for an autistic child. This would also apply to the requirement that the ethnographer interprets and reports back to the world as a privileged outsider; parents of autistic children spend a lot of time explaining to others and awareness-raising in the wider community.

Going Native

carlisle 029Sometimes researchers become so involved with the community they are studying that they struggle to retain the detachment required, a process referred to as  ‘going native’. In my last post I referred to a conversation between myself and a counsellor in which we used the metaphor of walking in Dylan’s shoes to describe being absorbed by the process of parenting  to the point of neglecting my own needs.  I can see that spending significant periods of time walking in your autistic child’s shoes, and coming to identify with the meanings they attribute to the world, could be considered a sort of ‘going native’.  There is a fine line to walk, perhaps, between wanting to enter into your child’s world in order to understand him better, and empathising  with his world to such a degree that you forget it is not the ‘norm’. I can see how the latter might happen; families become so accustomed to life with an autistic child that it can genuinely become a ‘new norm’. And if in the process of living with people we tend to take on some of their characteristics and beliefs, why would this be any different if we live with somebody autistic?

But what about the other side of the line? Do the benefits outweigh the potential risks of ‘going native’.  I would suggest that the more I can see the world through Dylan’s eyes, the better equipped I am to intuit his needs and support him to negotiate the non-autistic world. In my experience, it is my attempts to ‘walk in his shoes’ which have increased Dylan’s trust and confidence in me more than anything else. If I have tried to experience something the way that Dylan experiences it, then I am far better placed to help him avoid or cope with the things in life which he finds most difficult.

Woods and Shopping Centres

Christmas 2013 028When  Dylan was very young he used to lie down in the woods and stay there for long periods on his back, staring upwards. During these times he would make noise, squint his eyes and contort his hands in front of his face.  I couldn’t really tell how he felt at these times, nor did I know how to manage these walks so that I could keep Dylan moving. In the end, rather than stop the walks or intervene, I decided to walk in his shoes. This involved me mirroring everything which Dylan did, a response which I knew about having visited the Options institute in the USA, where this approach was pioneered.  Once I was in Dylan’s world I was able to experience the sensory world – the light through the leaf canopy, the wetness and softness of the leaves underneath me, the scent of soil – as he does.  This felt like a gift to me: a way of experiencing the world which convention would have prevented me from having, but which Dylan allowed me to enjoy.

The experience in the woods gave me the confidence to adopt the same non-directive strategy in a quite different environment.  Meadowhall Shopping Centre is a large indoor mall in our home city; while I wasn’t in the habit of going there I had noticed that Dylan sometimes found the environment difficult when we did.  On one occasion this involved a full-blown meltdown during which Dylan was prostrate on the floor, hysterical and unreachable.  I decided to copy him, thinking Dylan was more likely to let me help him if I got alongside him. This proved instructive.  Not only did I find that this was indeed a way of reaching Dylan at a moment of crisis, I also discovered that a shopping mall is a peculiarly unpleasant place if you experience it solely with your senses. Once I had stopped thinking about whatever it was I was there to buy, and let myself simply experience the place with my body, I realised how confusing and distressing Meadowhall must be for Dylan.

Poetry and Parenting

Not only did this process help me to develop an imagined voice for Dylan, I think it helped me to care for him with more confidence and respect. Once I had lived alongside Dylan in this way I had a clearer view of why our non-autistic world might often seem strange and difficult and frightening to him. Parents caring for children with limited communication need to develop ways of understanding which help them to care and to advocate  positively and effectively. This will vary for different families but all parents, I think, need the skills of ethnographers in order to understand their autistic children’s interests and needs.

For me, my writing practice has been an important part of this ‘ethnographic parenting’. I don’t think I would have understood some things about Dylan without trying to write about them; certainly the poems I have written in Dylan’s imagined voice and the events I have described here make sense to me as ethnography. In this respect, my writing has influenced the way in which I’m a mother to an autistic child. However, being the mother of an autistic child has had just as powerful an influence on my writing and on the  poet I have become..

 

Reference:

Elizabeth Barrett (2005) ‘Dylan’s Cars’ in The Bat Detector, Wrecking Ball Press