The Physical And The Emotional

wp_20170101_008I’d been reflecting that I was finding it hard to move on; 18 months since Dylan had moved to residential care and I’d managed hardly any of the things I’d told myself I was looking forward to.  I wasn’t sure what I’d done with the extra time; in fact I’d written fewer poems, been to the cinema less often and swum hardly at all.

I seem to have spent a lot of time thinking about Dylan, I said to a friend. That’s understandable, she replied. You haven’t stopped caring full-time for Dylan emotionally just because you’re not taking care of him physically.

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wp_20170101_009So I’ve been thinking about the relationship between the physical and emotional labour of caring for Dylan. One of the things I was concerned about when Dylan moved to residential care was that I’d forget how to look after him.  I worried that I’d lose the rhythm of bathing and shaving him if I wasn’t doing it every day. I feared the habit of being alert might leave me; that I wouldn’t hear the change in his footsteps or sudden silence summoning me to check that all was well. I was relieved I no longer had to do all the caring single-handed but I envied those who had taken my place; the fruits of this labour would now be theirs.

And the rewards of physical caring, I came to realise, are rich indeed. In this blog post, written 29 days after Dylan moved to his residential setting, I reflected on the possibility that chores are a currency of care. If you have a disability that means  you can’t take care of your own needs, perhaps care-giving acts, such as laundering clothes, acquire emotional freight? In the aftermath of Dylan leaving home, I realised that the physicality of caring for him had been a language of love.

I have learned that we don’t forget how to care for someone physically if we no longer do it every day; the rhythm is as deep in my body’s memory as climbing the stairs or swimming a length of the pool. The challenge is not remembering how to care for a person we love but finding a way of sharing responsibility for this. Perhaps, as a long-term single parent, I am less used to this than others. I have asked myself whether I would find it easier to share Dylan’s care with others if I had had to negotiate this with another parent while Dylan was at home. As I’m sure I’ve reflected before, there is something limiting as well as liberating about having sole care.

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wp_20170101_010And although Dylan is 22 years old he does still need physical care; he has to be supported to wash, dress, eat and to access the activities which he enjoys.  Since Dylan moved to residential care his ‘care plan’ has developed to reflect minor changes in his support needs;  Dylan needs more help selecting appropriate clothes than staff realised, for example, but minimal supervision when organising his daypack.

Sometimes Dylan shows a new streak of independence. When I arrived to collect him from his residential setting at New Year he took off at high speed. Where is he going? I asked staff. They weren’t sure. A support worker followed him and returned with a smiling Dylan: He’d gone back to his bedroom, she explained, to fetch his water bottle.

I was absolutely delighted.  The water bottle was new –  a present from Santa – and I wasn’t sure whether or not it was something Dylan would use.  It turned out that in the week since Christmas Dylan had got into the habit of filling it up each day and taking it with him on daytime activities. I could tell the present was a success – the fact that Dylan had remembered it, when we had not, indicated this. As we drove to the seaside to celebrate the new year I reflected that this may well have been Dylan’s most successful Christmas present this year.

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wp_20170101_011I used to love listening to Alistair Cooke’s Letter from America on Radio 4. In one programme he introduced me to the term ‘not on my watch’, a plea which Cooke suggested American presidents made in relation to errors happening during their term of office. I have taken this phrase and applied it to my various responsibilities over the years, albeit for less-significant events. ‘If the course fails to recruit, let it not be on my watch’. ‘If the External Examiner isn’t happy, let it not be on my watch’. ‘If the children don’t have their lunch boxes, let it not be on my watch’…

The problem is, if you’re a single parent it usually is your watch. Sharing Dylan’s care gives the term more currency. I was thinking about this at new year because a breakdown in communication had meant Dylan didn’t have appropriate clothes for our planned trip. When I returned Dylan to his residential setting after the holiday I discovered this was because he is running low on trousers and needs to buy some more. I was feeling a bit grumbly about this as I settled Dylan back into his room after our trip to the seaside.  I’ll do an online order when I get home, I said, hopefully they’ll come fairly quickly.

I didn’t like that we hadn’t noticed Dylan needed to replace clothes. We need a better system for keeping track of Dylan’s things, I said.  And as I said that, something different but related came into my head.  Dylan, I said, Where’s your water bottle? What happened to your water bottle?  He looked at me, inscrutable. I’m pretty sure he knew what I was asking and what the implications were.  I thought he looked a little sad, but perhaps I imagined this. I checked Dylan’s bag and the car but there was no sign of it.  Staff must have worked hard to help Dylan build the water bottle into his routine and to look after it while he was out and about, I thought to myself. I’d been looking after Dylan for less than 24 hours and had managed to lose it. I’m so sorry, I said to the support worker. I’m afraid that was on my watch.

Later, when I looked at the photos from our trip, I could see the water bottle in the pocket of Dylan’s backpack while we were kite flying on the beach. Perhaps it had fallen out then.  Still, I telephoned the restaurant where we had eaten dinner afterwards. They hadn’t got it. Those Jack Wills things are really popular with the young folk, the manager said. Someone probably picked it up.

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wp_20170114_003Last month I noticed that Dylan’s railcard had expired so I took it home to renew. Last week I remembered that I hadn’t done it and went to get the expired card from the ‘to do’ tray in my study. No sign of it. That’s odd. I hunted around a bit. It hadn’t fallen on the floor. I hadn’t put it in a drawer. I couldn’t remember for certain when I’d last seen it.  So much for keeping better track of Dylan’s things, I thought to myself. Now what to do? I searched though old emails for a record but drew a blank. I would have to sort this out: I had promised Dylan a train journey in the new year.

Can I have your Filofax please, Dylan? I asked him this weekend.  Dylan loves his Filofax and carries it everywhere with him.  He isn’t so interested in the daily records that we fill in (though he realises that they are important to us I think) but he’s very attached to the passes, tickets and concessions cards which he keeps there. As he gave it to me the Filofax fell open at his travel cards and to my amazement there was his rail card, neatly filed in its place. Dylan must have seen the card in my study and taken it back – keeping track of his own things, taking responsibility. Rather than just remove it again, this time I took the time to explain why. Dylan probably keeps better tabs on things than we realise.

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As I reflected at the start of this post, I might not look after Dylan full-time but I spend a lot of time thinking about him.  This week, I’ve mostly been feeling bad about that water bottle. This is a small thing, I know, but I’ve been surprised at how much a lost water bottle has taught me about sharing Dylan’s care. So while Dylan and I were shopping for clothes yesterday I encouraged him into the shop where I had bought the original. Dylan seemed delighted and quickly picked out an identical replacement.  Hopefully I’ll be a bit better at keeping an eye on it this time, at least until Dylan has built it so firmly into his routine that he looks out for it himself.

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The photographs of Dylan flying his kite were taken in Cleethorpes on New Year’s Day

The Key

berrien-2016-047This week is the start of the academic year in England; pretty soon I will be deep in teaching. Although September no longer marks a transition point for Dylan I don’t think I will ever lose the anxiety that the end of summer brings for parents of children with disabilities. Each year I would live on my nerves through the first weeks of term, hoping desperately that all would be well.

It is three years, now, since Dylan left school. That was the hardest end of summer ever; my nerves burned for months. Happily, Dylan is settled at last and can live his life without such difficult jags of time; there are no sudden changes to the year’s rhythm, or inexplicable annual endings, in his residential setting. There is a reassuring continuity to Dylan’s life.

berrien-2016-046That’s not to say there aren’t changes; periodically something disrupts a routine or we deliberately introduce a new pattern to Dylan’s week. The last time I posted an update here, for example, I was anticipating taking a holiday without Dylan. I fretted terribly about the proposed trip, concerned that Dylan would be upset by my absence, but he was absolutely fine.

The key to this, I’m sure, was the extended timetable the care home staff made for Dylan. Instead of a weekly programme Dylan had a schedule which ran for the time I was away, ending with the day he would see me again. Dylan also had a weekly ‘overview’ schedule so that he could count the sleeps until his next visit home.  It didn’t seem to matter to Dylan that the gap between my visits was longer as long as he knew he would see me again.

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13901449_293441187680481_5004186233514663936_nI’m really glad that I took that ‘next step‘ during the summer. I had a fantastic week in Brittany and relaxed into the different pace of time without Dylan. Some of the things that my girlfriend and I did Dylan would also have enjoyed, but I was able to linger over them in a way that hasn’t been possible in the past: a Chagall exhibition in Landerneau; a beach day at Poul-Rodou; a folk festival in Plomodiern; cycling on the Isle de Batz. I returned from holiday this year refreshed instead of exhausted.

I missed Dylan of course. I kept his timetable close by me and checked it each day to see what he was doing. Initially I talked about him a lot. In fact on the drive down to Portsmouth for the ferry I must have come close to driving my friend away with my talk of Dylan. That journey was terrible for me. I was in such a state of anxiety about leaving Dylan I had made myself ill: my stomach was in knots and I had a dreadful sense of foreboding. My friend let me talk or not as I needed. Having her to support and encourage me was probably key to my being able to take the step at all.

wp_20160821_006I’m not sure how patient she would have been with me had I continued to talk so much about Dylan during the week. At some point in the Channel , however, I felt the knots in my stomach loosen and my anxiety lift. The sun was shining. We were on deck. I could sit and read Zola and drink tea, as I had dreamed of doing. And so the week continued; while we were in France I made only one phone call to Dylan’s care home and sent just one email.

The email was to ask staff what size Dylan’s head was.  The last time he and I were in Brittany he bought a Breton cap which he has worn constantly since and I wanted to get a new one for him, as a gift. He looked a bit puzzled when I gave it to him on my arrival home, as he did about the Breton biscuits which had mysteriously appeared in the house.  I think he pieced things together when he saw my photos from the holiday, however. Usually Dylan looks through photos from our trips with great interest but I’d describe his interest in my pictures from Brittany as ‘passing’. So mummy had been away without him.  He ate the biscuits. He put on his cap…

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berrien-2016-025Dylan’s care home manager told me she thought parents should take a holiday, even if it causes separation anxiety. I understand that now.  It is important for parents of disabled children and adults to have a complete break, not just from caring but from thinking about themselves as care-givers.  And, I remind myself, learning how to be apart from your adult child is part of learning how to be a parent. In this respect the experience of a parent of a disabled adult is not dissimilar to the experience of any parent;  I was also anxious about being far from my daughter when she lived in France.

There is  something about being away from a disabled child or adult which can provoke particular anxiety, however.  Their vulnerability and dependence on others means you need to have complete confidence in the people caring for your son or daughter.  I feel lucky that Dylan is finally living somewhere I can put my trust in others.  This week I’ve been thinking a lot about how we make such decisions.  How do we figure out levels of confidence in someone? Is there a science to it? Do ticks on a checklist really reassure us?  Parents of children with disabilities spend their lives making difficult decisions about care provision,  but how we make them – well, that’s something I’m not absolutely certain of.

As well as the checklist there is surely something magical to this? Call it intuition, if you will. Something in your guts, perhaps. An unknotting.  Sense of lightness. Je ne sais quoi.  I’ve written about this before; how some of the critical decisions I’ve made about Dylan’s care have been based on something entirely irrational magical. And this week it struck me that I’ve been relying on such seventh sense since Dylan was born. Because, as a single working parent, I had to go back to work when Dylan was only a few weeks old so needed to find someone to look after him. I was pretty clueless about the berrien-2016-088 process; I didn’t know how to care for babies and certainly had no system for figuring out how to choose a childminder. But someone very special came into our lives and I was able to get back to work – which some days meant working a distance from Dylan – with the complete confidence which comes from knowing you trust someone else to care for your child.

Blogs can be wonderful can’t they? I was so thrilled to find a message on mine last week from Dylan’s first childminder 🙂 I moved away from the area quite soon after Dylan was born but Tan has remained a precious memory. She was a key person, perhaps, because she made my first difficult separation from Dylan not just possible but positive. I think that is probably also an accurate description of my experience this summer.

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berrien-2016-153The thing about key people is that they tend to be transitory:  children outgrow childminders;  parents move away; friends move on.  I can add something else now:  care workers get promoted.  Dylan’s key worker will be moving onto a new role next month so one of the things we will be discussing at his annual review this week is her replacement. E has been a fantastic key worker; she has developed a great relationship  with Dylan and has been instrumental in developing critical aspects of his care, particularly around communication and behaviour support. Although I was sad to hear Dylan would be losing her as his key worker, I can’t say I was surprised. Key people are special people and if they are young,  gifted and ambitious they inevitably get promoted 🙂   The only question in my mind had been when and to where she would move.

Happily, the promotion is within the organisation so Dylan will still have occasional contact with E. I am telling myself that Dylan was lucky to have her as his key worker during his first year in a residential home; E has helped him to settle in and created a system of care around Dylan which should ensure continuity. As the message from Dylan’s first childminder reminds me, we keep people in our hearts and minds long after they have moved on: I’m sure Dylan will not forget.

One of the many things I love about Dylan is his capacity to form deep  relationships.  He has his own magical system for deciding whether to trust someone; I’ve seen Dylan reject some people entirely while embracing others with utter loyalty and commitment.  The transparency of Dylan’s affections means I am confident his ‘voice’ will be heard in the process of selecting a new key worker.

berrien-2016-104There are, of course, no promotion opportunities for parents; it is a role for life, with no possibility of moves up, down or sideways.  While that means there is no escaping the temporary anxiety of being far from your child, from time to time, it also means you are their continuity; the birth rock on which their whole life pivots. So although I don’t care for Dylan on a daily basis now, and am no longer the only person who knows how to do this, I am the one with the long view, holding his narrative together. That, I tell myself, is a privileged position to be in.

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A final key is for my daughter. She will turn 21 this week, a birthday we used to refer to as the  ‘key to the door’.  So this September I’m making wishes for both my children to walk  happily through their newly-opening doors …

 

Except for the photo of Dylan (looking uncertain in his Breton cap) the photographs were taken in Brittany in August.

Zen And The Art Of Caring: the swept path

wet leaf fall 004The Anglo-Saxon name for an October moon isn’t Falling Leaf Moon without reason; for the last few weeks I’ve been meaning to sweep my front path. Dylan will slip on those leaves, I’ve kept telling myself.

Since Dylan started going to and from school on local authority transport at the age of five he has had the habit of hurtling at high speed into the house on his return. Without stopping to look or check for potential obstacles along the route he sprints like a German ICE or Japanese Bullet train to his destination. This habit has stayed with Dylan through 19 years of schooling and four different houses, three different schools and dozens of different drivers and escorts.

Although this behaviour may not appear unduly worrying it can be problematic. There are pedestrians, for example, who may be knocked to the ground by whirlwind Dilly. As the behaviour continues year round, unchecked by weather conditions, there is the danger that Dylan could fall badly in icy weather (or wet autumn leaves). And there is the possibility that in Dylan’s 50-250 yard sprint (depending on where the minibus has managed to park) he will encounter something to spook him – a dog say – and throw him catastrophically off his stride and into passing traffic. For in this brief time, Dylan is beyond any supervision or control; all a carer can do is stand back and watch, fingers crossed.

While the home sprint may be relatively low-risk, I worked with Dylan’s teachers and escorts periodically to try and re-shape the behaviour. We tried rebus symbols, rewards and changes to the drop-off routine but nothing made a difference. Eventually I gave up, thinking that perhaps once Dylan left school it would no longer be an issue, especially as the behaviour seemed to apply only to local authority transport (Dylan walks perfectly calmly into the house from cars and public transport). The behaviour appears, however, to be deeply embedded; Dylan has continued to sprint into the house from the minibus which now brings him home from his adult day centre.

wet leaf fall 005I must sweep these leaves up, I said to Dylan as I locked the front door of the house one morning last week: I’ll do it tonight. I put Dylan on his minibus and raced to work. I am always rushing to and from work. I have perfected the art of being back in time for Dylan’s bus while wringing every last minute from the working day; I know the shortest time it takes from desk to front door and I almost always bank on it. It’s a vital calculation; get it wrong and the consequences are horrible. Dylan would not understand, if I wasn’t home, why he couldn’t get off the minibus. Having to wait for me to arrive would not only distress Dylan but would have knock-on effects on other service users and families.

When Dylan was at school I was aware that local authority transport was only allowed to wait for an absent parent for so long before taking the uncollected child to what I always thought of as ‘the pound’. While I never had had to retrieve Dylan from such a place, I did slip up a few times. Usually I was stuck in traffic within striking distance of home; over a 15 year period, given that I’m a single working parent, that’s not bad. I always cut it fine though and one thing my calculations never seem to adjust for is the sweeping of paths: I didn’t, of course, get home in time to do this last week.

The swept path

wet leaf fall 001So when I got Dylan off the bus that night I hollered slow down, you’ll slip as he raced towards the house. The bus had had to park further away than usual that night due to workmen; as I had walked up the road to get Dylan I told them they might want to stand back a bit as in a moment my big boy would come tearing past at high speed – which is exactly what happened, with me in hot pursuit.

I don’t know what I expected to gain by chasing after Dylan like that. He is nearly 21 and in his physical prime. I wasn’t going to catch him. Even if I kept him within ear shot he wasn’t going to listen to my exhortation to walk. So haring after him, I now realise, was pointless and silly. But that is what I did and yes, you’ve guessed: I fell on the unswept path. And I went with such a bang and a crack on those wet leaves I lay dazed on the ground wondering what on earth I had done and what I would do next. When I limped into the house Dylan had his arms clamped around his ears, a sign that he was distressed. So instead of letting myself cry or peel off my clothes to inspect the damage I said ‘mummy fell’ then maintained our usual routine of reading and signing Dylan’s link file entry about his day. I would deal with the blood and bruises later.

wet leaf fall 008Happily they turned out not to be so bad; a few days later and I am already mending. I could have done without that fall though; it has made caring for Dylan and myself, as well as working and doing things like driving, slow and difficult. The first night, struggling to cook, shave Dylan or type, I chided myself for not keeping a swept path. I need a more zen approach to caring, I told myself; taking a few moments for small tasks, like clearing leaves, could make a difference to my well-being.

wet leaf fall 009So the next day I swept my path. It only took ten minutes but from that short time I took something valuable. And while I was sweeping I remembered a poem about a swept path. The poem, by Helen Farish, is not about autism; the narrator is learning to care for lavender, rather than for a child. The process Farish describes, however, and its impact on her sense of self, resonates with my experience in many ways. Farish reminds me to celebrate myself; this week the achievement I am most proud of is, indeed, my swept front path.

Programme
Helen Farish

She loves the radio, the freedom it gives
to listen out the back as she’s passing to and fro
or sitting in the half-house half-garden room

on a midsummer’s Sunday evening
listening to a three-hour programme on the monsoon,
and the front door is open and the back,

and every now and then the setting light
coming past the lavender she’s recently started caring for
and the honeysuckle she never used to notice nor those roses

hidden till she chopped back the buddleia – the light
coming past the flowering jasmine and the hanging basket
she’s so pleased with stops her,

makes her see how much of her life
has been lived in this house,
that she’s become who she is here

and what she will remember of these years is not
the times when living alone seemed a problem to solve
but the peace:

looking at a house she has done her best in,
loving small successes, the hanging basket, the picture in the half-
house half-garden room, that repotted plant,

and her larger successes – allowing herself the pleasure
of a three-hour programme on the monsoon
sorting through a box of postcards with a green glass of gin,

wet leaf fall 011seeing all those places she’s been to: but her journey
to this programme, her swept front path, this is
the one she’s most proud of.

Reference:

Helen Farish, ‘Programme’ in Intimates (Cape, 2005)

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

2013-12-20 09.56.41

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:

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.

*

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.

*

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.

*

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.

~

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

~

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.

~

20130714_164902

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.

~

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.

~

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.

~

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.

~

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).