Reasonable Adjustments: working and caring

May 011I went back to work recently after having some time off sick at the end of the summer. I had an infected ear as a result of Dylan’s attempts to remove it and stress-related symptoms which made it hard to concentrate. Previously I’d managed the demands of being a carer alongside a full time job but last month I knew I had reached my limit. I had never had a sick note before: what do I do with this? I asked my General Practitioner.

I’ve almost caught up at work. It helps that Dylan has been generally calmer in the last few weeks; although there have been occasions when he has become distressed, I’ve managed to head off potential incidents. Being able to predict the signs, and having some strategies for settling Dylan, help me feel more confident. I wouldn’t say things are alright, but I’m treading water not drowning.

The cost of adjustments

2013-11-30 16.39.46Dylan may be calmer due to some of the changes I’ve made in his care. One intervention which seems to have made a difference is removing high-sugar foods from Dylan’s diet (I have written about this here and here). This change has come at a cost, however, as implementing it sensitively has meant the removal of some of Dylan’s favourite routines.

Dylan was in the habit, for example, of going to a cafe following a weekly trip to the library. Because this routine was embedded, in order for Dylan not to have cake I have had to remove the library visit from his schedule. Another activity which has had to stop, at least for the moment, is the cinema. When I first started taking Dylan to the cinema I used sweets as rewards for appropriate behaviour; as the habit of buying sweets continued, if I don’t want Dylan to have them it means no cinema visits either.

Kent August 2012 171As well as changing Dylan’s routines I have had to adjust the way he accesses the community. While previously I would take Dylan most places, providing I had a back-up plan, there are now some activities I wouldn’t attempt alone. My new risk assessment has to involve a consideration of how I would protect Dylan and myself, as well as members of the public, if Dylan became distressed. Because of the changes in Dylan’s behaviour he now receives 2:1 support in respite care and has access to a team of staff at his day centre.  I can’t provide this level of support at home but weekends would be impossible if we never went out so I do still take risks.

Four Days

While looking after Dylan used to be relatively low key it now requires my constant focus. Evenings and weekends are no longer a rest from work but rather my busiest times. I have always regarded caring a full-time responsibility but since June it’s felt like a full time job.

limitsFortunately, as it turned out, I’d negotiated a reduction in my working hours before the changes in Dylan emerged. It wasn’t that I had a crystal ball and had foreseen that home life would become challenging; I requested reduced hours because the education provision I had spent a year fighting for was due to start in September (you can read more about this here and here). While I was delighted that my effort to secure this had paid off, it meant that Dylan’s day would now end at 3pm. This presented me with a problem I could only solve by reducing my working hours.

Dylan had been accessing education provision one day a week as an interim measure so I had already had a taste of how difficult things would become for me after the summer. The situation reminded me of primary school years; when my children were young the lack of fit between the end of the school day at 3.30 and the end of the working day at 5.30 was a constant source of stress. After my marriage broke down, this exacerbated; as a single parent I was dependent on after school club for my daughter and on my mother or a childminder for Dylan. The situation eased as the children moved to secondary school; although never easy, their end-of-days became more manageable. Now, it seemed, Dylan would revert to primary time.

While it’s hard to find satisfactory childcare for an autistic child it is almost impossible to find for a ‘high need’ autistic adult, especially for a handful of hours on the edge of a city. With Dylan’s education provision set to increase from September I would have to work shorter days and collect Dylan myself.

The cost of flexibility

2013-10-17 12.42.01Parents of disabled children and adults have been entitled to request flexible working patterns (part-time working, compressed hours or working from home) under employment legislation for some time. A 2013 survey of working parents of disabled children (conducted by Working Families & Mumsnet) reported that the most important factor keeping respondents in employment was flexible working (36.5%) and an understanding employer (21.2%). My employer has, over the years, made it possible for me to continue to work full-time by accommodating my requests to work flexibly. My classes, for example, are not timetabled until 10am, giving me leeway in case Dylan’s transport is running late. It isn’t easy – I’m often running at high speed between places and I never take a lunch break – but I manage.

From June 30th this year the right to request flexible working was extended to all employees with 26 weeks of service with an employer. Employers have always had the right to refuse a request to work flexibly if they can demonstrate an adverse impact on business. Multiple requests for flexible working could potentially increase their ability to claim this; if everyone started teaching at 10am there would be an awful lot of empty classrooms in the early morning. It will be interesting to see how the extension of the right to request flexible working impacts on requests granted to employees with caring responsibilities.

The guidance which has been issued to employers includes suggestions about what to do if several employees request the same thing. As ever, the distinction between what an employer is required to do and what they are encouraged to do is critical; there are more ‘shoulds’ than ‘musts’ in the revised legislation. Bearing this in mind, I’m happy with the agreement I secured of a temporary one year reduction in my contracted hours.

The fifth day

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What might have been…

I had an email from a parent last week asking whether I could update her on the education provision I’d been involved with setting up. She had heard it was open – was this true? And had it kept its original purpose to provide for ‘high need’ adults? By the way, she hadn’t seen me and Dylan at the inclusive cinema screenings recently – she hoped we were alright?

The email brought home to me how much had changed and how quickly. I replied that the new provision was indeed open but that changes in Dylan’s needs and funding meant it was no longer appropriate for him. Of course I don’t begrudge another young person taking up the place which Dylan might have had but I feel sad that he won’t access the provision I lobbied so hard for.

So, as it turns out, I don’t need to pick Dylan up at 3pm after all. For the moment, he is attending his day centre (which operates longer hours) five days a week. Still,  I’m glad for my fifth day. It helps to be able to leave work early enough to have a break before Dylan arrives home from his day centre. The time is also invaluable for doing the chores I can no longer manage at weekends; Dylan used to enjoy shopping with me but with so many of his favourite foods off the menu, and his behaviour unpredictable, this isn’t an option anymore. The fifth day, I’m discovering, helps me tread water.

A reasonable sacrifice

2013-10-17 12.41.52It must have been on a day off that I caught an item on the TV news about downshifting to a four day week. Two young researchers (themselves part-time) were being interviewed about a report they’d authored expounding the benefits of 0.8 employment contracts. Naturally I listened in. All seemed to be going sweetly until the interviewer asked the million dollar (or rather 20%) question: how many people did they imagine could take such a hit to their pay?

There is no getting away from the impact on disposal income; not everyone could sacrifice a fifth of their income or make good the loss from a savings pot. So while it’s great that we have the right to work flexibly, it does come at a cost (and one which is often borne by women). Ironically those most in need of flexible working may be least able to sacrifice income: if you’re on your own no one else is going to pay the mortgage or build your pension. While I’ve never regretted leaving my marriage I am continually struck by how hard it is to bring up a disabled child alone. Two’s certainly better than one if you can keep it together.

There’s a storyline in the BBC Radio Serial The Archers at the moment which involves independent entrepreneur Debbie Archer giving up work to look after her child. Actually it’s not clear whether she’s staying home on account of the child (who she has brought up on her own so far) or the new man in her life. Debbie’s mum Pat, an activist and Greenham Common veteran, is troubled by her daughter’s decision. Listening to Pat bewailing the death of feminism the other evening I almost capitulated on my decision to cut back my hours; income, I realised, isn’t the only thing I stand to lose. Still, I can understand where Debbie’s coming from. Mothering. Caring. These are important. They make a contribution to society and to the lives of those we love. Dylan is calmer now. I have more space in my week to support him and to ease his transition to what lies ahead. It’s a reasonable sacrifice.

Images:

The photographs were taken by me except for the roller coaster (a gift from a friend, original source unknown). I took the photos of the steel helter skelter at the Electric Works, an office building in the city where I live. I attended a conference there last year on women in the workplace so the photos seemed appropriate. I loved that office workers were using the helter skelter instead of the stairs; I watched people on the top floor casually taking a sack from the pile and, sandwiches in hand, sliding out of the building for their lunch break. A perk worth working full time for perhaps 🙂

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The Working Families ‘Working On Campaign’ aims to:

  • raise awareness of the difficulties faced by parents of disabled children who seek to combine work and care;
  • encourage change in childcare provision and employment practices to enable parents of disabled children to remain in work;
  • change attitudes so that it is recognised that parents of disabled children can work but need support to remain in employment.

Useful resources:

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.

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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.

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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: by the time I left for university I was a regular drinker with a pack a day habit.

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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.

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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.

Der Mass Weizen

Today, we take the lime green S2 line
in the direction of Petershause.
I have chosen, without thinking,
a green cotton blouse embroidered with yellow stars.
Our stop is the one after Karlsfeld,
just past the Ford factory and the big houses
with swimming pools. I hadn’t expected
people to be living here – am surprised
by their laughing gardens as the train rolls by.

~

You have been dry now for ten weeks.
We are on holiday, making our slow way
past mountains, cathedrals, sliding rivers.
You have unpacked your pills, nightly, at each hotel.
You sweat and tremble, pointing to places
you remember.  This is your country –
but unfamiliar, in the heat, to walk so quickly
past the kiosks and bars.

~

For the last bit of this journey we take a bus.
It is full of American voices, Japanese cameras,
a few people wearing headscarves.
It was my idea to come here.
We climb off and stand aside, let others
tramp in lines along a narrow track, the gravel
underfoot unbearable against the silence.
There is no shelter here from the high sun; it burns
through the thin fabric on my shoulders.

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The crowd troops to the sheds to see for itself
while we walk the perimeter, looking for a gate.
I stare upwards at the barbs along four lines
of wire above our heads, a white concrete tower
with four small windows in its roof.
I stumble; slip as the gravel skitters away
under my smooth-worn soles. Out of water,
our lips begin to crack.

Beside me you are walking, as always,
with a stoop; trying not to be so tall,
as if you have no right to be here.
You lift your anxious eyes to mine and I turn
away, thinking how ragged you look today
with your sunken cheeks. And I wonder, then,
if this is your country; if perhaps you live
with these walls and watchtowers and the gravel
crunching and sliding underfoot.

~

Later, arriving back in Munich too late
to leave by the early evening train,
you head for a Biergarten –
order ein viertal liter und mass weizen.

~

The Cricketers

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. 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.

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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. Later I used it to numb myself. Now I would discover the most insidious use of all.

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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.

~

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.

~

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.

~

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 🙂

Reference:

‘Der Mass Weizen’ was published in my first book, Walking On Tiptoe (Staple, 1998) and also included in the re-issued version of that book Walking on Tiptoe and Other Poems (Bluechrome, 2007).

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