The Eyes

WP_20150518_19_49_08_ProPlanting sweet peas in my backyard recently I tried to remember how the occurrence of flower shades had led Mendel to explain the genetics of eye colour. Although I couldn’t recall the details, I had retained the basics from school biology. What I couldn’t remember, I realised, was the colour of Dylan’s father’s eyes – that detail I had airbrushed from my memory. But not brown, I assume, like mine: I must carry a recessive gene for sea-coloured eyes as Dylan’s are gooseberry-gray.

London Lions 005I love Dylan’s eyes: in some lights they are green and in others gray. There is no agreement about them. When Dylan was at school he would sometimes bring home worksheets describing pupils in his class: names, hair and eye colour. Each of Dylan’s teachers, it seemed, had a different view of Dylan’s eyes: one year his worksheet said blue; another teacher wrote ‘green'; yet another thought them gray. Sometimes it isn’t easy to tell what colour Dylan’s eyes are not because of the light but because, like many autistic people, he won’t let you look.

Madonna

eyes 001I watched Madonna being interviewed on The Jonathan Ross Show recently – or rather I listened as background to whatever else I was doing at the time. Ross is a skilful interviewer; he establishes connections with guests which make them feel safe and inclined to be open. As a result his interviews can drift like private conversations with neither party entirely in control of where they might end. When he interviewed Madonna, however, I found myself looking up at the screen increasingly often, puzzled by the flow of the conversation.

The interaction was not as fluid as usual. Ross seemed to be struggling to find a way in or make a connection; he couldn’t lure, tempt or tease his guest. And then it struck me; Madonna was refusing eye contact. Keeping her eyelids lowered while she listened and spoke – raising them only briefly to acknowledge a question or to signal she had no more to say – Madonna sidestepped or declined Ross’ attempts to connect. Her behaviour didn’t strike me as overtly sexual; she wasn’t avoiding eye contact to project herself as demure or to smoulder (à la Bacall). Rather it seemed self-protective; Madonna didn’t want to be vulnerable through the eyes.

John

eyes 002For ten years I watched one of my university tutors keep his eyes lowered. A brilliant historian and Bentham scholar, as well as teaching the political ideas strand of my undergraduate course John was my academic tutor. In that capacity we had regular contact and when I became a PhD student at the same college we maintained the relationship although he wasn’t my supervisor. This man was good to me; it is him I have to thank for a scholarship to the USA and other awards. As well as a mentor he was a father-figure and friend to me; he hired me as a babysitter, invited me to lunches at his lovely home and gave me the dressing downs I needed when I went off the rails.

In all these years I saw his eyes only a handful of times. He kept them firmly to the ground; usually fixed at a point just beyond my left shoulder. Sometimes, in the early days, I would glance behind me to see what it was he was looking at. Later I realised that this was simply how he lived. Before I understood, I would delight in trying to get him to look at me. With all the wild confidence of twenty I tried every trick I knew to make him lift his eyes to mine. I managed this only a handful of times. As I remember them his eyes were pale blue (and, I now realise, anxious).

A man I loved, a history man (let’s say a surrogate dad)
put his long noble legs, scholarly elsewhere-head,
into the ordinary mechanism of his undistinctive car
and drove to where no one would know. The car park
of The Runnymede Hotel is unremarkable but for this:
a meadow border with the Thames, the weir
and grit. The 200 yards of sting and cut it took
to walk, barefoot, to the water’s edge.

 

eyes 003The memory of that kind and clever man has stayed with me. That he averted his gaze is not the only thing I remember about him, of course, but it is one of the things I have thought about while parenting a child who also avoids eye contact. I don’t mean to suggest more than a fragile link between Dylan and this man; at first glance they have little in common. I find it helpful, however, to think about what connects people rather than to think about difference; if I consider the reasons why other people habitually avoid eye contact, perhaps this will help me to understand Dylan.

We all avert our eyes sometimes of course. Often it is to conform to social rules – not making eye contact on the underground or in public toilets for example. Children and adults with an Autistic Spectrum Condition are usually not aware of such protocol; Dylan sometimes stares in ways considered socially inappropriate just as he ‘inappropriately’ withholds eye contact. As his gaze is never (or rarely) a result of social convention, rule-governed eye contact cannot tell me much about Dylan’s experience; it is voluntary gaze-avoidance which interests me.

Some of us avoid eye contact when we aren’t telling the truth or are bored or disagree. Students sometimes look away from me so that I won’t ask them a question. I avert my eyes in impatience. My tutor, I told myself as a student, was probably shy. Recently, as Dylan’s behaviour has become more ‘challenging’, I have paid attention to the things which provoke anxiety. Even if I cannot identify a trigger, quite often I can gauge how anxious Dylan is through his eyes. It was when I realised this that I remembered John; on the handful of times he looked me in the eye, this is what I would have seen had I understood what I was looking at.

Dylan

eyes 004Though he does sometimes look at me when I speak to him, more often Dylan looks over my shoulder at a place not dissimilar to the point at which John would fix his eyes.  When he was very young Dylan rarely if ever made eye contact. It took me a while to realise that this did not mean Dylan didn’t notice things. On the contrary, he commits every detail of a situation to memory within minutes of entering a space; with a fleeting glance Dylan mentally ‘photographs’ an environment, noting each object and the relationship of objects to each other.

The speed and accuracy of Dylan’s observations is impressive; that he makes them while appearing not to look is extraordinary. As this seems to be a fairly common skill among autistic children and adults it is fair to assume that levels of eye contact are not linked to levels of observation. An artist friend once reminded me that we see with our brains, not with our eyes; Dylan’s brain is working so well in this respect he doesn’t need to look at something for long to understand it.

eyes 005As Dylan’s observational powers are so good I dismissed the possibility that they might be linked to his lack of eye contact. If something is working smoothly it is easy not to consider that it might also be part of a conundrum. Recently, however, there have been suggestions that autistic people may avoid eye contact precisely because of their observational powers. There is speculation (based on accounts from autistic people) that sustained eye contact is avoided because of the ability to see in so much detail. It is possible, perhaps, that autistic brains ‘over-see'; the sheer quantity of visual information bombarding the person is physically painful.

I don’t think it is about quantity of information alone; I suspect that for Dylan it is also about what he sees. I sometimes watch Dylan flinch or look away from my eyes after holding their gaze momentarily and I find myself wondering what it is he has seen. Is it my sadness? Did I give away, in my eyes, that I worry about his future? Or that sometimes I am scared? I think Dylan sees these things. Sometimes I think of this as his heightened empathy – a connection with me he has forged in the absence of language.

I find this surprising but plausible. Dylan appears to have a photographic gaze; if you combine this recording of visual information with an ability to ‘feel’, the potential for emotional overload is enormous. While we readily acknowledge that to be exposed is to be made vulnerable, we rarely consider the vulnerabilities of the person to whom information is revealed. Looking away can, perhaps, be a form of protection from seeing too much as well as from too much being seen (as in the case of Madonna). If eyes are the windows of the soul, imagine how it might feel to look through them.

The owls

eyes 006Dylan has always loved owls and my mum used to look out for any that might catch his eye. When he was around nine she bought him a set like Matryoshka dollies – one inside another and another and another, becoming smaller and smaller. This particular gift would get its eyes caught by Dylan however; within an hour he had systematically scratched them out. We could think of no reason why. Since then I’ve watched Dylan adopt other strategies with eyes that trouble him: a photograph of a friend he insists must be turned from view (‘eyes’ he says to me, pointing at them); a book of piano music with Beethoven on the cover which I continually find turned to face the stand. Some eyes, it seems, are too painful to contemplate.

The poet

Sometimes we encounter something which transforms the way we think. After years of being told to demand eye contact when interacting with Dylan I read something about a year ago which suggested the opposite; you don’t need to make eye contact, the article argued, in order to listen. Why then would you insist somebody looks at you when you speak to them? As I monitored my own behaviour I realised it is indeed the case that my ‘deep listening’ is never accompanied by eye-gaze. In meetings, when teaching or during private conversations I tend to look away if I need to think very hard about something. Maintaining eye contact actually distracts me from processing complex information; if I lock-on eye contact with someone I invariably stop listening to what they are saying.

Since reading that article I have radically changed my practice not just with Dylan but when teaching too. I no longer assume people are not listening if they are not looking at me and the only time I ask Dylan for eye contact is if I want to show him something (demonstrating an emotion with my face for example). Recently I have developed the habit of touching Dylan’s cheek with my finger if I would like him to look at me. The gesture reminds me of an encounter on a train years ago.

It was 1984 and I was travelling from Belfast to London via the overnight service between Stranraer and Euston, I found myself seated with a poet and a novelist. After a while I was seated with just the novelist as the poet spent his time wandering the train, drunk and a bit disruptive. Several times he was told by the guard to remain in his seat or he would be asked to leave the train; by Carlisle the situation had deteriorated and he was ordered off. I remember how troubled and vulnerable the poet seemed that night. I also remember his eyes averted, fixed to the carriage floor.

“Give me your hand”, his friend said to him softly: “give me your hand.”  This seemed to calm him and the two men sat holding hands. As the transport police arrived to escort the poet off the train he became distressed again: “Give me your foot”, his friend said to him, “give me your foot”. I looked on in astonishment at the man holding a hand and a foot; I had never seen communication like this before. What I witnessed that night, as well as a tender friendship between two men, was the intuitive action of someone who understood that eyes can sometimes see and feel too much.

Reference:

Extract from ‘Ways of Drowning’ in Elizabeth Barrett (2005) The Bat Detector. Wrecking Ball Press

On Not Putting An ‘X’ In A Box: the disenfranchisement of the learning disabled

Today is polling day in the United Kingdom; people over 18 in England, Wales, Scotland and Northern Ireland will be putting an ‘X’ in a box on a ballot paper. Some people will not be able to vote in the Election, however, even if they are registered: Dylan, for example. It’s not that Dylan isn’t entitled to vote – he has the same right to participate as other adults – but entitlement does not necessarily translate to participation.

One Person, One Vote

WP_20150506_21_02_29_ProThree years ago, when Dylan became eligible to vote, I telephoned a Government helpline for advice on elections and the disabled. Dylan, I was told, could have assistance reading the ballot paper but would have to go alone into the voting booth. I explained that Dylan would not be able to do this; he would need support to allocate and insert an ‘X’ on a ballot paper. Dylan, I explained, could choose between concrete objects which are meaningful to him but would not be able to discriminate between candidates on a ballot paper. This does not, of course, disqualify a person from voting; you don’t have to have a learning disability to be unable to distinguish between politicians. As the organisation Every Vote Counts note:

Like anyone else, someone with learning disabilities has the right to choose who they want to vote for by any criteria they like. It is not up to anyone else to judge if reasons for choosing someone are valid or not. Equally, the decision over whether someone votes or not must be theirs and theirs alone. Carers and support workers are not allowed to make decisions on behalf of the person they care for when it comes to voting.

While it is important to support adults with learning disabilities to identify their own voting preferences, those with significant support needs may be disenfranchised by the stipulation that carers cannot vote on their behalf. Certainly this is the situation that emerged in relation to Dylan. If Dylan couldn’t vote in person, it was suggested when I sought advice, I could request a postal or proxy vote for him. As the Government advisor talked me through the requirements, however, it became clear this was no solution.

Whether voting in person, by post or by proxy, a vote must be cast for the candidate that the person with a learning disability chooses. If that person is unable to engage with the political process in order to do so, this clearly raises challenges in terms of exercising the right to vote. Furthermore, Section 29 of the Mental Capacity Act (2005) states that a person can only appoint a proxy if they have the mental capacity to do so. I can’t see how Dylan can use his vote, I said to the woman on the helpline. It was possible, she suggested, that carers in a similar position to me were claiming proxy votes anyway – but it was up to me whether or not to apply for one, she added.

Two People, Two Votes

independent.co.uk2It is not the case, of course, that because Dylan cannot engage with the voting system he does not have political interests. As a vulnerable adult, Dylan has a stake in policy decisions about disability benefits and the organisation of health and social care. More specifically, he has an interest in public transport systems; inclusive sport and leisure facilities; the maintenance of public parks; and the availability of high quality care workers. These are the things which matter to Dylan and which make a difference to the quality of his life. Because Dylan has an interest in the provision of these local services, on the run-up to council elections (the first vote Dylan was eligible to participate in) I thought about applying for a proxy vote for him. I wasn’t comfortable with the implications, however: firstly because I would have to lie about Dylan’s ‘capacity’ in order to be allocated such a vote and secondly because if it were allocated I would have to vote on his behalf.

news.bbc.co.ukIf I were to vote on  Dylan’s behalf, I asked myself, would I cast his vote the same way as my own? Our interests are shared, after all; an inclusive society which protects the vulnerable and prioritises health and social care. Surely this  would mean two identical votes: ‘one person, two votes’? Or would it? What Dylan needs above all is effective local representation: a confident MP who knows the system, has leverage and can advocate for him. We live in Sheffield Hallam, Nick Clegg’s constituency. Although Clegg’s role as Deputy Prime Minister could have reduced his effectiveness as a constituency MP, that has not been my experience in relation to Dylan. Actually, Clegg was rather good when I asked for his help with a funding problem. Of course I cannot be sure that the swift resolution was due to Clegg’s intervention – maybe it was coincidence – but other parents of autistic children and adults in my constituency have reported similar experiences. I have never voted Liberal Democrat myself but if I were to vote on Dylan’s behalf I might. It is thus possible I would argue, when acting on behalf of someone else, to be ‘two people, two votes’.

Two People, One Vote

independent.co.ukFrustrated by Dylan’s situation, on the run up to today’s election I tried a different approach. I have Power of Attorney for Dylan: were there special arrangements for those with such authority, I asked?  As it turns out, there are, though this proved to be no solution either; as with vote by proxy, the person for whom you hold Power of Attorney has to authorise you to vote for them.

Today, therefore, Dylan and I are still ‘two people, one vote’. I assume that other adults whose learning disabilities mean they are not able to appoint a proxy are in a similar position. In addition, adults with learning disabilities who could vote with appropriate support may be unable to access this. Effectively, this disenfranchises adults with learning disabilities.

An entitlement to vote is not sufficient; it must be possible to exercise this right to vote. The nature of Dylan’s disability means that he requires someone to act in his best interests. While a vote on his behalf could be seen to threaten the principle of ‘one person one vote’ this does not, as I have argued here, have to be the case. It should be possible for the interests of adults with severe learning disabilities to be represented within a democratic system. A simple form, for example, could require those casting a vote on behalf of someone for whom they have Power of Attorney to include a brief rationale. Those of us who support adults with learning disabilities are quite used to justifying the decisions we make on their behalf; explaining a vote would not be excessive burden.

Alternatively, the government could just trust us.

*

Reference:
Every Vote Counts provide information and support to people with learning disabilities and their carers.

http://www.everyvotecounts.org.uk/

Images:
The composite images of the three main party leaders are from The Independent and the image of Nick Clegg is via bbc.co.uk

Mother And Son In Aspect Ratio 1:1

showroomOne of the things I have missed most while Dylan has been without respite is the cinema. I’ve always loved the movies, especially in the late afternoon, so there was little I liked better on a night off than to catch an early evening film at the cinema across the road from my office. It’s more than four months, now, since I was able to do that. I can hardly believe I’ve managed for so long.

Recently there was a day when I thought I wouldn’t manage. The yearning was physical: I longed for the particular darkness and to feel the tang of marmalade ice cream on my tongue as I waited, in a pulse of white light, for the film to begin. How, I asked myself, could I have this? Screenings don’t start until the afternoon; I couldn’t be home in time for Dylan’s return from day centre even if I went to the first film of the day. Maybe the out-of-town multiplex offered earlier start times but not for the films I wanted to see (or with marmalade ice cream).

I would have to think creatively. The independent cinema I favour offers special screenings for particular sections of the community; once a month, for example, there is an autism-friendly event. I scanned the listings to see if there were an early day group I could join. The new mum club looked good but I didn’t know anyone with a baby I could borrow. The Over-55s? Now that would be the one. There was an 11 a.m. screening that day of a film called Mommy. Perfect.

soundonsight.orgI requested a day’s leave then checked the blurb. Xavier Dolan wasn’t a director I knew and the film was not one I recognised. My heart fell as I read; I wasn’t sure a narrative about a single mother’s struggle to support her violent adult son was what I needed. I was living this reality; I had coped with two incidents that week already. My plan had been to have a couple of hours not thinking about being such a mommy. I let myself feel sorry for myself for a while. Then it occurred to me that  today’s screening might be a gift: perhaps there was something art could teach this just-coping mommy about life?

*

english.rfi.frOnce I was seated in the pulse of light I started to relax. This was exactly what I needed, I told myself. There was a hum of anticipation in the auditorium as a man took the stage; tickets for the 55 club, it turned out, included a talk. Xavier Dolan, I discovered, is a young Quebecois film maker who had turned 26 only the previous week. Mommy was his 5th film; his first, made when he was 19 years old, had received an eight minute standing ovation at the Cannes film festival. Dolan is so very talented, the man giving the introduction mused, and still so young, it will be exciting to see where he goes next.

Dolan had, apparently, created a slightly altered version of Canada for Mommy – a ‘stretched reality’ . The film returned to one of Dolan’s favourite themes: the claustrophobic relationship between a mother and son (his previous films included the ‘semi-autobiographical’ The Reason I Killed My Mother). In order to represent the intensity of the mother-son relationship Dolan had filmed Mommy in something called a 1:1 aspect ratio. This would be immediately apparent to us, we were told, as the screen would look narrower than usual. Dolan had claimed this was the only way to shoot his film; the 1:1 aspect ratio ‘mirrors the turned-in circumstances’ of the mother and son. I had guessed that Mommy would be bone-close viewing. Now I was sure of it. I settled back to watch our narrow world unfold onto a narrowed screen.

*

Earlier that week Dylan had become anxious one evening. Later, when I considered the possible triggers, I couldn’t identify with any certainty what might have caused it. He’d had a calm enough day and was watching a film. My daughter was in her room. I was working in the attic. Perhaps it was a scene in the movie that upset Dylan. Or a sudden memory . Maybe it was confusion at the changes since his sister returned. Whatever it was it made Dylan come hunting for me, intent on tearing off my ears (his particular behaviour). Usually I can predict such an attack and ensure I am safe but on this occasion Dylan had me cornered. I held my arms up to protect myself but I knew it was no good. It would have been much worse, I’m sure, if my daughter hadn’t come to see what the fuss was about and pulled Dylan off.

That’s how it can be sometimes. Dylan doesn’t mean to hurt me. It is a flight/fight response to something which has made him anxious and emotionally overloaded. I probably head off three or four times as many of these incidents as I witness. It’s easy not to notice when we get something right, though, or to overlook the times we handle a situation skilfully. We tend, instead, to remember when we miss something or a situation goes wrong. Dolan understands this; he gives us a mommy sometimes at her glorious best and some days way out of her depth.

*

thechildrensmediaconferenceThe son in Mommy is not autistic. ADHD is mentioned but not as the cause of violence; we are offered social as well as psychological explanations (poverty, an absent father, educational failure, inadequate social care). Nonetheless I recognised the relationship between mother and son and found parallels with my own experience.

Dolan wants us to see the closeness of the mother-son relationship as both nourishing and limiting. The mother (‘Die’) is the best thing her son, Steve, has; when everyone else has given up on him, she refuses to. But Die also holds him back. She cannot contain her son’s anger by narrowing his world to the walls of her house; when she tries, the violence turns on her. At these times the screen can hardly contain the charge; it spills out of frame as mother and son struggle for control. The intensity of the relationship (its 1:1 aspect ratio) becomes clear as they absorb the violence, refusing to give up on each other or walk away.

As I watched I kept thinking about a book I’d been reading. Phoebe Caldwell, reflecting on her work with autistic adults with learning disabilities, suggests that challenging behaviour can arise from a failure to differentiate from the mother. In ‘normal’ child development, Caldwell explains, mother and baby enter a ‘dyadic state’ in which baby’s every movement and action triggers a response from the mother. For the baby this is confirming; it learns something about its mother but it also learns something about itself. The baby therefore starts to understand that it is separate from the mother. It is possible, Caldwell suggests, that an autistic baby’s brain is unable to interpret the mother’s signals and the baby therefore fails to develop a separate sense of ‘self’. As a result:

Mother and baby remain bonded in this bubble of infantile need – infant because it needs to survive, and mother because she is drawn in by the maternal instinct to meet infantile need. The mother’s agenda remains the child. The baby may grow physically into adult but remains in the infantile state of critical need for the mother’s nurture. It still retains the fear of extinction if it feels it is not receiving this nurture or that the ‘dyad’, the infant survival state, is threatened. (Caldwell, 2006, p. 140)

Violence and aggression are common, Caldwell claims, where there has been a failure to separate from the mother as an infant. When the situation is complicated by autism, she suggests, it is extremely difficult to establish separation as an adult. Direct physical separation, Caldwell explains: ‘simply heightens anxiety, which sends the adult-infant back into the bubble.’ (Caldwell, 2006, p. 141). Recently I have been asking myself whether Dylan and I could be in a dyadic bubble. Perhaps, I reflected as I sat in the darkened cinema, this is what linked me to the woman on the narrowed screen?

*

Viewed through the lens of failure to differentiate from the mother, Dolan’s film made much sense to me. There are other representations of mothering in the film, however. The neighbour, Kyla, for example who befriends Die and Steve. Although we are aware Kyla has children, we don’t see her performing her mothering role; this part of her identity is ‘bracketed’. Kyla’s initial contact with Die and Steve is as a mother-son unit but she soon develops friendships with them as separate individuals. ‘From the point of view of the outsider ‘, Caldwell notes:

the mother/adult-infant bubble ‘feels’ exclusive and others involved in care will feel shut out. It is difficult to cross the boundary either way – the feelings involved are so intense and primal. It requires enormous emotional effort to establish communication between the different parties involved in care since all parties will feel protective. However, a real sharing of feeling may be almost the only way to stand back and see what is happening. (Caldwell, 2006. p. 141).

This process is, I think, one of Dolan’s preoccupations. When Kyla first gets drawn into the mother and son’s world, Die is struggling to establish boundaries that she and Steve can keep. Kyla’s increasing involvement in their lives is transformative. She gives Die a break from caring; she shares some of the practical and emotional responsibility of parenting Steve; she equips mother and son with education and life skills; and, crucially, she models alternative (non-maternal and non-infantilising) ways of building relationships.

Part way through the movie it seems that this support will be enough. It’s a film about community, I thought to myself; Dolan is inviting us to consider society’s role in supporting families. Mommy does not, however, resolve so simply. Unable to continue supporting her son, even with the help of Kyla, Die turns Steve over to the authorities. In a harrowing closing scene we are reminded that there are no winners in this situation. If you are vulnerable and troubled – because you are autistic, perhaps, or have ADHD or learning disabilities or are anxious or mentally ill – then you will struggle to receive the support you need either at home or from the state.

The laws on care and incarceration which Dolan explores may be a ‘stretched reality’ but they didn’t feel too far away from where we are or might be in my own son’s life time. While Steve’s relationship with his mother is claustrophobic and limiting, public services are depicted as chronically damaging. There is a sense in which the relationship between the mother and son, for all its flaws, had been the greater resource; for while such a relationship can be claustrophobic it can also be enabling. Although by the end of the film Die can no longer manage alone, she had at least tried to confound the skeptics; from the ‘turned in’ circumstances of a mother and son, stretched vision can also come. Mommy turned out to be gift indeed.


References:

Dolan, Xavier (2014) [Director] Mommy
Caldwell, Phoebe (2006) Finding You Finding Me. Jessica Kingsley Publishers

Images:
Showroom cinema by libcom.org Mommy by soundonsight;Xavier Dolan by english.rfi.fr; interior of the Showroom by thechildrensmediaconference

Shredding Pinocchio

WP_20150331_17_33_36_ProSo the other evening I heard the most terrific commotion from Dylan’s room; nothing unusual about that, I thought to myself as I took the stairs two at a time, except that something seemed different about this noise. But by the time I got to Dylan’s room it had stopped; he was sitting on his bed, absorbed by something. As I approached I couldn’t believe what I was seeing: Dylan was shredding Pinocchio.

What are you doing Dylan? I asked, alarmed. What are you doing to Pinocchio?!

But Dylan had disappeared into the zone where he is unreachable. I moved towards him wondering whether or not I should stop him from tearing the book but he pushed me firmly away. He was intent on ripping. I watched Dylan work carefully through the pages tearing each one into strips and throwing them in his waste bin. He was systematic and purposeful. The book had to be shredded.

more dylan's 21 053Tearing pages creates sensory effects which can be soothing or stimulating if you are autistic. Although Dylan doesn’t usually shred, he appeared to have established a rhythmic pattern of tearing which he found calming. Still I was alarmed – not because of the shredding per se but because it was happening to Pinocchio.

Dylan has been in love with Pinocchio since he was a boy. Although he has collected various Pinocchionaelia over the years, his focus has settled on this particular book. I have described the book, in a previous post, as a sort of witness or friend. The book goes everywhere with Dylan; it waits behind him on the piano while he has his meals and it sits on the laundry basket in the bathroom, open at a favourite page, while Dylan takes a bath. It is carefully positioned on his bed while Dylan is in his bedroom and is carried in his backpack wherever he goes. Dylan even manages to hold it when he goes climbing.

independence 016Why then would Dylan shred it? His relationship with the book had seemed as usual less than an hour before when Dylan had it with him during his evening meal. Had something happened to the book to ‘spoil’ it perhaps? Could Dylan be upset because he had accidentally torn or spilled something on one of the pages or it had become creased or in some way damaged? If Dylan had learned to love the book so much maybe an alteration to it, however slight, would be disappointing and frustrating for him? This was the only possible explanation I could find for Pinocchio being so suddenly, and so thoroughly, rejected.

To try and understand how Dylan might be feeling I searched for a parallel in my own life. Was there something important to me which I could feel let down by? I could think of plenty of objects which have sentimental value or which I care about and wouldn’t want to damage. I keep these in relative safety, however, rather than carrying them with me. If I restricted myself to thinking about things which are portable the only object I could come up with was a mobile phone. Perhaps it would help me empathise with Dylan if I imagined the frustration of not being able to get a signal? Might I be tempted to bin or smash my phone? I’m actually not very interested in mobile phones so maybe not. Still, this was the closest I could get to imagining how it might feel if something I depended upon let me down.

WP_20150331_17_33_44_ProMy concern at the shredding of Pinocchio reminded me of how I would panic if we didn’t have a spare dummy in the house when Dylan was a baby. I’d been set against using dummies (or pacifiers) before my children were born but Dylan turned out to be a sucky baby who wouldn’t settle without one. So for years we lived in the shadow of Dylan’s dummies – just as now I was living on the end of Pinocchio’s strings.

Although Dylan has an interest in collecting duplicates  this edition of Pinocchio was a one-off; he has two copies of another version but there were no spare copies of this favoured edition. As Dylan shutteres 012turned and tore the pages, however, he appeared calm. I considered the possibility that I might be more anxious about this than Dylan. I remembered a woman I used to live with who would sometimes take a pot from the kitchen cupboard and hurl it across the backyard on her arrival home from work. She was a teacher at a London secondary school and smashing crockery helped her to release stress. Though the behaviour made me anxious it calmed her; afterwards she would put the kettle on for tea as if nothing had happened. Perhaps in a similar way shredding was helping Dylan to feel better.

This helped me understand why Dylan might feel compelled to tear his book but I was concerned that the benefits would be only temporary. For while my housemate smashed pots she didn’t like anyway, Dylan loved Pinocchio. What would he do without his book by his bed through the night? How would he eat his breakfast without Pinocchio? Or be comforted by the weight of his backpack if Pinocchio wasn’t in it? What was going to happen to us without Pinocchio?

*

WP_20150418_19_43_59_Pro-1The dummy-sucking years had made me anxious. One day a friend advised: loosen up a little Liz – he’ll stop using it when he’s ready – when did you last see an adult with a dummy? Perhaps it was my more relaxed attitude as a result of this advice which enabled Dylan, soon after, to give up his dummy. He did this with the same determination that he had kept it for so long; one day he simply spat it out and never bothered with a dummy again.

I would have done well to remember this instead of messing around online trying to source a replacement copy of his preferred version of Pinocchio. That night, Dylan took himself quietly to bed and the next day simply carried on with his life. It’s true he replaced the shredded Pinocchio with one of the alternatives but I saw this as positive change and development, like a hermit crab discarding a too-tight shell for one in which there is still space to grow. The thought of Dylan the hermit crab brings to mind one of my early poems, ‘The Littoral Zone’. The piece opens:


This is the littoral zone, you say, as we scavenge below strandline,

picking out shells and weeds for the children.
You lift a Dog whelk, turn it in long-fingered hands,
place it gently on your palm. Hermit Crab, you whisper,
as the barnacled shell rolls over, sprouts a pincer.
Gull-eyed, you pluck a tiny periwinkle from the sandy flats,
show me a speck of crab curled inside,
explaining it will leave this for a bigger shell in time.
This recluse, this little anchorite, is in the first shell of its life:
strung out ahead of it, across this beach, a future of univalves.

I like that, I tell you:
the thought of wearing a right-sized shell
with room enough to grow; getting the fit right –
feeling snug (but not too much).
And I realise, as I say this, that I’ve been crawling backwards,
reversing across the littoral zone –
cramping into ever smaller shells.

…/

The poem goes on to describe the discomfort of this process and the way in which it can involve a loss of self and  ‘voice’. It ends optimistically, however, with the speaker resolving to: ‘fill my lungs, cry with the gulls’. As I re-read my poem I enjoyed the link I had found, years later, with Dylan’s pattern of growth and development. It also occurred to me, however, that  I could be viewed as still ‘reversing across the littoral zone’.

Pinocchio 003Last month, for example, I resigned my management role at work. Given most people seek promotion rather than demotion this is not the expected direction of travel, professionally or materially. The decision, however, was driven by a desire to make space in my life for the things which matter, not least my children. I prefer to think of it as seeking a larger not a smaller shell:  The amazing thing, I said to a friend, is not that I quit but that I managed it, while being a carer, for so long.

Stepping back at work has had some immediate unexpected benefits. Within a couple of weeks I had drafted a couple of new poems (even with the ‘plenty else’ going on in my life for which I had resigned my role). They weren’t particularly successful drafts but I had, at least, made space for them. Then, the other day, I picked up a manuscript of poems which has been languishing on my desk: perhaps I would get around to sending this to a publisher now too?

After re-reading it I decided not to bother. There’s nothing terribly wrong with it. The poems are OK. Most have already been published in magazines. But really, I thought to myself – does the world need another book of love poems? Probably not. And I kept finding faults with the poems. I’m tired of conceits. Unimpressed by sestinas. Fed up with words like ‘heft’. So I did something I have never done in all my years of writing: I scrapped the lot (well, six poems got a reprieve). Time to move on.

I like the idea that starting over with my poems and giving up my management role are not very different to Dylan shredding Pinocchio; we sort of liked them, but they didn’t really satisfy us anymore. Something else will turn up, I tell myself, if we stay brave and open-hearted.

Reference:

Barrett, E. (1998) ‘The Littoral Zone’ in Walking on Tiptoe. Staple First Editions.

For information about my work as a poet please see the pages ‘Liz‘ and ‘The Poems‘.

Staying Alive: autism and risk

risky flight 003In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

risky flight 009Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult'; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

risky flight 005These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

risky flight 008So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.


Images:

The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.

Celebrating Dylan: afternoon tea, music and dancing

21st cake 002Although I accepted long ago that Dylan doesn’t like parties I decided to throw one for his 21st birthday. Why? I suppose because it is considered a year to celebrate. I can succumb to such suggestion: I don’t like parties either but I marked my 50th when the time came.

As well as 21 being a special number, the time seemed apposite. As I reflected in my last post, the search for somewhere for Dylan to live appears to be reaching an end. If all goes to plan I would expect Dylan to be embarking on the next stage of his life fairly soon. While the proposals are still on the drawing board, and subject to Dylan’s approval, it does seem that we have reached a crossroads. Dylan’s 21st birthday therefore seemed a good opportunity to take stock and look back in celebration at his life so far. [postscript: as I was about to publish this I received devastating news about Dylan’s placement about which more in a future post]

Earth, Sky and Stone

Once I’d decided to hold an event I was faced with the questions what and where. Dylan hodsock 027had enjoyed a friend’s ‘at home’ party recently but this wouldn’t work for Dylan who retreats to his bedroom if we have visitors. A Disney movie at Dylan’s favourite cinema would go down a treat with Dylan but wouldn’t be anything out of the ordinary or to everyone’s taste. An ice-skating party would also delight Dylan but would exclude others – and although pleasing Dylan and his peers was important, most of the guests would be adults who had supported us over the years.

In the end I settled on a tea party with music and dancing at the Yorkshire Sculpture Park. The park is one of Dylan’s favourite places and somewhere he has visited since he was a baby in a backpack. The combination of earth, sky and stone is magical and has brought us peaceful healing at times of grief as well as much joy. Happily, a room in the visitor centre appeared perfect for Dylan’s party: clear boundaries, white walls, natural light, good acoustics, and a lobby and annex for timeouts.

Anxieties and Absences

While the room and venue seemed ideal I was concerned that Dylan already associated the park with a particular routine; a trip there involves a two hour hike around the perimeter before a switchback past the lake and refreshments at the visitor centre. Would Dylan accept a visit for a different purpose? There was a possibility, I reflected, that he might not get to his party on the day.

WP_20150308_15_32_32_ProTaking Dylan to see the room reassured me he would walk down a corridor we didn’t usually use and allowed me to photograph him for a social story. Another way I tried to prepare Dylan was to involve him in sending out invitations. While Dylan might not connect sticking stamps on envelopes with a party, the activity provided an opportunity for me to talk to him about the event. Dylan understands the words ‘birthday’, ‘balloon’, ‘cake’, ‘music’, ‘dancing’ and ‘presents’ so I repeated these while pointing to the invitation and naming his guests.

How Dylan would cope with the guest list I had drawn up was another of my worries. I had envisaged the party as a celebration of Dylan’s life so it was important to me that I invited people who had supported him in the past. This meant that the guest list included care workers and PAs, childminders and neighbours as well as family friends and young people with autism. Some of the guests had provided support to me, rather than directly to Dylan, so he knew them less well. Others have a special role in our lives – two friends who are Dylan’s trustees for example. What would be the impact on Dylan of bringing together these various people from different contexts? And what sense would he make of absences? If someone who Dylan hadn’t seen since 2006 appeared, would he expect his Gran (who died that year) to walk through the door as well?

Support and Loss

Two people who would be out of context at the party were J and A, care workers at Dylan’s day centre. I would, I realised on the run up to the party, find it difficult to manage the event while supervising Dylan who requires 1:1 support at all WP_20150330_18_05_02_Protimes and 2:1 support in the community. As a single parent I cannot provide this so I continually run (sometimes erroneously calculated) risks; such hazarding at a party for 35 guests was not, I realised, a good idea.

Fortunately J and A, who know Dylan and have a good relationship with him, agreed to work the party. Having PA support for Dylan was an enormous help and freed me to spend time with Dylan’s guests. It also had an impact on how Dylan spent his time however; while untroubled by J and A being out of context, Dylan stuck very close to them. I wondered if this was Dylan’s way of managing an event which brought together multiple contexts; rather than move between them, he opted for the clarity of a familiar relationship. This definitely seemed to help Dylan to settle and as the party progressed he moved around the room more independently.

Although I was glad to have the PA support, it did mean a certain ‘loss’ of Dylan on the day (though I would have experienced other losses had I been supporting him myself). It was Dylan’s party though, not mine; the important thing was that he was happy. And everyone agreed that Dylan seemed to be having a magnificent time; by the end of it, he was up on stage, high kicking to the music.

Take Me To Church

imagesXD2UE9JJDylan chose the music for the party which included a Blues compilation, Hozier, Adele, Sam Smith and Florence and the Machine. Giving Dylan control of the music was a way of engaging him in the event and creating a sense of ownership. It was also important because Dylan uses music to ‘screen out’ sound, smells and touch which he finds uncomfortable. Playing familiar music, I hoped, would help Dylan to cope with sensory aspects of the party which he found disturbing.

I knew that chief among the environmental disturbance for Dylan would be us, his guests. Always ambivalent about human interaction, Dylan can range from seeking contact with others to pushing them away. Although I can’t always work out his reasons, some things I know. Dylan, for example, doesn’t like loud voices; shrill voices; excited voices; quick voices; tears; sudden movements; uninvited touch or eye contact. I know this because I am guilty of an awful lot of things on that list. Some people find it quite natural to adopt a manner which Dylan finds comfortable but I’m not one of them; I have to work hard at being the sort of person who Dylan can cope with.

dylan liz 1Because I know that I am many of the things which Dylan finds difficult I assume that I also have the potential to irritate and disturb other autistic people. And if an irritated autistic person goes into ‘meltdown’ then there can be a domino effect where other autistic people in the vicinity become distressed. I know that this is true of Dylan who becomes very anxious if one of his peers gets shouty or disturbed.

Dylan’s party contained ample scope for someone or something to trigger an autistic person to behaviour which could trip another autistic person to meltdown which would in turn feedback the trigger with added anxiety and accumulated distress to another young person. While there was a bit of this, I was struck far more by the impressive way in which Dylan and his guests managed themselves in the environment. It was partly the music, I think, which helped Dylan to ride out his anxiety at quick movements and noise. A couple of times, conscious that Dylan was getting anxious, I cranked the music and let Hozier’s voice melt the noise in the room: Take me to church…

Never Never Land

_WEA6744The music which helped Dylan to feel comfortable was, of course, just as likely to cause discomfort to someone else. But at his own party Dylan was allowed to make his own noise and quick movements :-) He was also permitted (for one day only) to eat three pieces of cake. I’m not sure I would have allowed this but it was one of the advantages for Dylan of being supported by PAs rather than low-sugar mummy. But perhaps I’m just envious; by the time I went to find myself a piece of his cake there was none left.

I’m not surprised that Dylan went back for more; the ‘number 2′ was his Never land sponge. A silhouette of a city skyline (to represent the Darlings’ London) was iced around the edge of the cake with Peter Pan standing on top and ‘never grow up’ inscribed down the 2’s curve. The ‘number 1′ , meanwhile, was a fruit cake with a seascape around the edge and Dylan’s beloved Ariel on top; this cake carried the inscription ‘a part of our world’. Creating a coherent design out of two characters was the source of such anxiety that in the end I opted for simplicity and hoped that the cakes would at least taste good.

SAMSUNG CAMERA PICTURESUnfortunately this strategy didn’t work so well for the buffet. Conscious of the need to cater for Dylan I asked for the afternoon tea menu to be simplified. Could we have some sandwiches without garnishes and condiments please? And could two of the sandwich options be on white bread? And could we perhaps have some vegetarian sausages, even though not traditionally part of afternoon tea? What I hadn’t anticipated, when I requested this autism-friendly food, was just how beige the whole thing would look. It can be hard to make plain food look appealing and nothing on the table tempted me (or, judging by the leftovers, others). I got home from the party feeling hungry.

The Presents

_WEA6733I had thought food might be an important way of helping Dylan to manage the event but on reflection I should have ordered it to please Dylan’s guests rather than to suit Dylan – particularly because, as it turned out, Dylan was far too busy opening presents to bother much with the buffet. For after refusing to open his presents all day, Dylan suddenly decided that he knew exactly what to do with them. It’s probably true to say that Dylan greeted his presents arriving rather than his guests; he tore off paper at high speed, leaving his PAs to juggle wrappings and gifts into separate bags (which they did brilliantly). I had little idea, afterwards, who had given what to Dylan.

_WEA6732I was sorry that I hadn’t taken the opportunity to thank people more carefully on the day; I had, after all, had the perfect opportunity while Dylan was pouring the wine. I’d asked Dylan’s PAs to support Dylan to go round the room with a bottle of bubbly, filling glasses for a toast. I was pretty sure this would engage Dylan as I’d watched him pouring wine for people at a friend’s party. I thought this might be a good way of encouraging Dylan to interact with his guests.

Although I’d thought that Dylan pouring the wine would give me a perfect opportunity to say a few words, I was too preoccupied with how the pouring was going to focus. Perhaps, on reflection, I should have helped Dylan with the wine as that would have helped me to interact as well :-) As far as I could tell, however, Dylan filled up glasses beautifully; the only thing that went awry was when, searching for an alternative to singing Happy Birthday (which Dylan doesn’t like), I proposed Three Cheers which one of Dylan’s guests didn’t like.

And the Past

_WEA6751But the greatest hit with Dylan was probably not the wine or music or the dancing or cake, or even the presents, but a slideshow of his life I had put together. From time to time I would see Dylan glance up at the wall where the images were projected and smile. I suppose, given the importance of the visual world to Dylan, it’s not a surprise that this would appeal.

SAMSUNG CAMERA PICTURESDylan’s guests also had reason to look up from time to time; a challenge I’d set myself, when putting the slideshow together, was to include photos of as many people at the party as possible. One such photograph was of Dylan at a friend’s 50th birthday party. Could I email a copy to him at some point? my friend’s husband asked; his mother-in-law (who had since died) was in the frame. His request reminded me that I had something of my mum with me; I had brought (thinking I might read it) a blessing for Dylan which she wrote before she died.

My very special grandson, Dylan. I have seen you grow from a tiny baby to the very grown up boy you are today. I am so proud of the way you have learned to live your life. You are so happy and my wish is that you can always be so…

Wherever there are gatherings there are absences. Sometimes, though, it is in the spaces that we find our celebrations. I enjoyed the party but my special moment was before people arrived, almost alone in the room with Dylan, dancing to Paper Moon. As we danced, a photo of my mum ghosted onto the wall: Look Dylan, I said, your Gran.

tears 001

Images:

I had in mind to make an album of the party for Dylan but for one reason and another didn’t take any photographs on the day. It is my biggest disappointment :-(  A big thank you to Bill, Bryony and Caroline for these. The photos of baby Dylan and his Gran and of big Dylan checking out the party venue are by me. The photograph of me and baby Dylan at YSP was taken by my ex-husband. The cake design and invitation are by me and my daughter. The Hozier album cover image is from Wikipedia.

Nae Narrative: Goldilocks and the handbrake turn

april-may 09 011It’s been a while since my last post. The fairly predictable rhythm of life with Dylan has been interrupted by the arrival home of my daughter. Last month she became unwell in France, where she had been living since September, and following emergency surgery had to return to the UK. Receiving a phone call to say your child is in hospital, especially when they are hundreds of miles away, must be one of a parent’s worst nightmares. It has been a stressful time but happily my daughter is recovering.

I think Dylan is pleased too although it is more complicated for him. Although he has someone else to play ‘one potato, two potato’ with, Dylan has had to give up his video den so sister can have her room back. There has been a lot of baking since my daughter returned which Dylan approves of, but he has had to share his ‘moo-ey’ and not be first priority all the time. There have been fewer steam train trips and less wild walking at weekends and Dylan has missed these. He seems to like his sister joining us for cinema trips though. And I think he enjoys listening to our conversation – though at times the language gets too much. One day in the car, unable to hear the CD for my daughter and I chatting, Dylan reached across and nipped her.

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untitledThere’s an excellent interview with the Scottish writer Kathleen Jamie in the current issue of Poetry Review. I admire Jamie’s ability as an essayist as well as a poet and was particularly interested in her reflections on writing prose. Jamie does not think of her essays as ‘shrunken prose pieces’ but rather ‘extended poems’. Her essays, she says, come from the ‘poetry side’. The essay form, Jamie asserts, needs to be reclaimed from the academics to whom it was given over. For Jamie this involves downplaying the role of a ‘narrative arc':

…I had a sign above my desk for years that just said “Nae narrative”. Because that was the thing to avoid. The trick is to just let it rest on its images like a poem does. Every time I felt the urge to go, “And then this happened, oh, and then that happened”, I just pulled the stuff out. Got rid of that. And let the piece move image to image. Amazing how much you can just skip over between paragraphs. Like a stone being skimmed over a loch. And you can do a sort of handbrake turn in the middle of it.” (pp38-39)

The ‘poetry side’ of me recognises Jamie’s description of the process of writing. Not only is this how my poems get made, it is my preferred way of approaching prose. For it is when I approach a subject tangentially – through association, imagery and handbrake turns – that I feel the white heat of transformation. By this I mean the way I emerge from the experience of writing changed, knowing something about a subject or myself that I didn’t know previously, a process I think of as shaking the world into new shape in order to make the ordinary extraordinary and the extraordinary tangible.

*
I read the Jamie interview at a time when I was feeling a bit detached from my own poems and struggling to maintain my identity as a poet in the face of other demands on my time. At least I was managing to make regular blog posts, I told myself, although these had become prosaic blow-by-blow accounts of caring for Dylan. “And then this happened, oh, and then that happened” as Jamie would say. Perhaps I should just pull the stuff out, I reflected?

The thing is, in my caring role I am often in search of a narrative. Autism land is a bit of a mystery a good part of the time; in fact it can seem a series of handbrake turns (on icy roads). Sometimes I need a storyline to bear the aggressive behaviour out of the blue sky blue or understand the bear hug Dylan gives me one morning while we wait for his bus. I try to make sense of the unexpected twists and turns in the day, hunt down reason and explanation constantly. I suppose it’s a way of convincing myself I’m in control of events which, in truth, I can feel powerless to influence.

*

You look like Rafiki hit you over the head with his stick I said to my daughter the other morning. What is that supposed to mean Mum? she asked. I wish you wouldn’t talk in metaphors all the time. I’ve watched so many screenings of The Lion King with Dylan the narrative may be as real to me as the psychiatrist tells me it is likely to be for him. It’s a way of making sense of the world I suppose, a reality which leaves Dylan convinced that puppet boys walk and mermaids sing.

But it’s the house of bears I’ve been tiptoeing through recently, trying out chairs and eating porridge. I feel like Goldilocks I told a friend, close to tears about a burnt mouth and broken chair. For this is how I have come to view the process of looking for somewhere for Dylan to live: one setting too salty, another too sweet, one too small, another too large. Parents of autistic children spend a lifetime visiting residential schools, respite providers, independent living settings and care homes. I have been doing this since Dylan was three and I imagine it will continue for as long as I live – though I go on hoping I will find a forever place for Dylan before I wear out.

I am fussy I know (as I expect are all parents). I visited every specialist school within travelling distance of home when Dylan was school age and on the run-up to him leaving school a couple of years ago I viewed dozens of adult settings. I was one frantic Goldilocks. I didn’t know it at the time but I was lost in the woods, trying to find the bear house.

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Then, last summer, something happened. Oh no. Handbrake quick!

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goldilocksamazonThe first house was so sweet and tidy it made me gasp. Plump cushions in perfect order on the sofa. The chairs so soft! Alphabetical DVD collection. Pine table in the kitchen with heart-shaped ornaments and arts and crafts decor to die for. Oh this is lovely, I exclaimed, this is just so nice. I was making notes in my head: I could hang some dried flowers like that I suppose. Ooh. Nice teapot. Wonder where they found that. Love those tiles!

Well we like to think that just because you’re disabled doesn’t mean you can’t have nice things, the member of staff replied. The colour scheme in the bedrooms was terrific. Silver and purple! Not sure about the big floral print on the soft furnishings. A bit girly. Someone with a design eye had clearly had fun though. And no expense spared.

At my side, Dylan was pulling and tugging. He’d spotted the DVDs. Uh oh! I’m so sorry but you see he’s probably looking for something – oh you have Pinocchio – that will be it. I’m so sorry he’s upset the display. Here, I’ll get him to help put them back. Oh. Are you sure? Alright then. Probably best anyway. But thanks for showing us around. Yes, I’ll call.

It was possible, I realised on the drive home, to be too tidy (my daughter would laugh to hear me say that). I had been charmed through my own eyes but looking through Dylan’s was a different matter. Dylan likes his environment to be ordered but this house had been designed for the care staff not for the residents. The lesson was a useful one: if I was Goldilocks in the house of bears then I would have to test the chairs for Dylan not me. And the ones at this setting had been too soft.

*
The second house, a converted barn, could not have been more different; it was as if I’d looked for the opposite of the first (or perhaps, I considered, I just didn’t know what I was looking for). There were no chairs here; you brought your own. That’s one way of making sure they are the right size and softness I thought to myself, surveying the vacant empty bedroom. I could put Dylan’s bookshelves against that wall there. Plenty of space here for my bouncing boy.

I was glad to see that the communal spaces were relaxed and unfussy. Music was playing. A resident was dancing with her care worker. There were books around the room and an oilskin cloth on a dining table. Dylan and I sat down on the sofa to take in the view. Outside, in this quiet valley at the end of a long farm track, there were fields and a ruined abbey, a river and horses. Dylan would love the walks I thought to myself…

So, last summer, two members of staff from the barn house came to visit Dylan at home. They were very nice but they didn’t stay long and I knew they hadn’t asked the questions they needed to. It was too painless. Caring for Dylan – keeping him safe and happy – needed support they hadn’t asked me about. I’d volunteered some of it but not all. They couldn’t possibly put together a realistic plan for Dylan based on the information they had, I thought to myself. I looked at the young care workers sitting awkwardly, balancing their note books on their laps; perhaps my sofa was too hard? Later the manager phoned me, pushing for a decision. Otherwise I will have to re-market the room, he said. It stopped me in my tracks: Dylan might be in a marketplace but it was a home I was looking for.

*
When I arrived at the third house I all but collapsed into the chairs. At last, I thought to myself: here was somewhere I could imagine Dylan being comfortable and which I might relax into too. The house was not too tidy, not too shabby. There was a garden with a sensory area and trampoline. The rooms were spacious and airy. The ceilings were reinforced and light fittings adjusted for bouncing; Dylan could jump when he needed to! Most importantly, the staff were professional and relaxed, inspiring quiet confidence. This, I thought to myself, was a safe place and a home. Breathe now, breathe…

*
I knew this would happen, I told myself, as I sat parked up in a lay-by close to tears. I had no idea where I was. I didn’t recognise the neighbourhood at all. I had been driving for over two hours and was already more than an hour late. I was hungry and exhausted. I tried, again, to make sense of the directions I had printed before I set off. Perhaps if I tried to find my way back to the motorway I could pick up the route?

Unlike my son I have virtually zero visual-spatial awareness. I am hopeless at directions. I struggle to read maps and i cannot memorise routes and landscapes as Dylan does. Every time I drive down a road it is as if it is for the first time. ‘Get a Sat Nav Liz!’ friends say to me repeatedly. But I’m hopeless with technology too and gadgets make me nervous. Over the years I have missed ferries, taken a 100 mile detour and abandoned planned destinations because of my poor sense of direction. So it didn’t surprise me to be sitting at the side of a road in an unfamiliar town, but it did frustrate me.

Today’s appointment was important: I was supposed to be at a planning meeting at the ‘third house’. Although I had visited the setting twice before, I had taken the precaution of printing directions for myself and setting off with an hour to spare today. Why had this not been enough? How had I still managed to be lost? I decided to abandon and head home.

*
It was purely by chance that I stumbled across the house as I attempted to find my way out of the town. I stopped and rang the bell, wanting to at least explain myself. I hadn’t been able to telephone them as I didn’t have the number with me and hadn’t been able to figure out how to find it on my mobile phone (I did say I was hopeless at gadgets).

The people I had been due to meet were still at the house so we were able to go ahead that day after all. And so it was agreed that the house was appropriate and that as part of Dylan’s transition I would support him for tea visits in the new year. We can meet you as you come off the motorway and escort you to the house, the manager suggested as I prepared to leave. We don’t want you getting stressed with Dylan in the car. But I declined; I will have to learn the route if Dylan is to live here, I said.

*
goldilocks2en.wikipediaSo let me linger with this narrative a little longer – long enough, let’s say, to return and taste the porridge. And this turned out to be smoother than expected; I found the house with only one wrong turn next time. The visit went fine and Dylan and I were relaxed enough to stop for a drink en route home: we can come here sometimes, I told him, when I visit you in the new house.

But then something happened. That might sound suspiciously like ploddy narrative but on this occasion it really was a squeal of tyres: sccrreeeecch!

‘But why?’ people asked. This is not how the narrative was supposed to arc. The case for a residential placement for Dylan had been accepted. Funding was in place. Transition plans had been made. I wouldn’t advise doing that my GP said when I told her I was thinking of pulling out: you might not be offered anything else. Dylan’s social worker concurred: You could lose the funding completely, she said. But it was too late; I could already smell the rubber burning.

*
Why? What happened? The chairs were comfy and the porridge good. The beds were probably fine too – though Dylan didn’t get as far as testing them. So what was it that sent me into spin? It was, I told myself when I tried to rationalise it later, about community. The third house was only in the next town over but may as well have been at the end of the earth; we didn’t know the town and it wasn’t our world. Sure I could have learned the way and Dylan would have found new routes, but I came to believe I ought not to remove Dylan from the community he knows and loves. His life is in this city on the edge of fields and sky and Dylan belongs to it with his heart and nerves.

Surely, I said to Dylan’s social worker, we can find somewhere for Dylan here? I would be willing to compromise on some things on my wish list, I told her, if Dylan could stay in his own community. I want to be able to visit him on my way home from work and take him out to the pub on an evening and drop in for ten minutes or so when I feel like it, I said. I don’t want to have to drive for two hours to a place I don’t understand.

*
While this was true I was aware there was something else going on that might be truer still. When I hadn’t been able to find the house that day I told a friend, afterwards, that I needed to be careful not to let it affect my rational thinking. I have a tendency, I explained, to make magical meaning of such incidents. Perhaps I was meant to get lost? What if someone was trying to prevent me from making a wrong decision? Maybe Dylan wasn’t meant to go there?

goldilocks1Daft isn’t it? But if I hadn’t let at least a little bit of that magical thinking into my heart I might not have questioned the narrative arc and made “a sort of handbrake turn in the middle of it”. And as it turns out I’m glad I did because, soon after, I heard about some new provision close to where we live. When I visited recently I let myself believe there might be a magical purpose to everything: If I hadn’t pulled out of the other place I would have missed this, I sighed. I am optimistic it might not be long before Dylan is checking out the beds.

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

Note
I considered another setting for Dylan during this process which I don’t mention in this piece (but which I have written a little about here). Taking Jamie’s advice I avoided the real narrative arc in order to ‘move image to image’ through the Goldilocks metaphor. I like to think that this helped me to make sense of the experience differently than if I had faithfully reported events. [The omitted setting was one I considered at a time when Dylan’s ‘challenging behaviour’ required support levels which we were later able to reduce].

References

‘The Interview: Kathleen Jamie in conversation with Colette Bryce’ (2014) in Riordan, M. [Ed] (2014) Poetry Review, Vol. 104:4 Winter 2014, pp 26-43

The image of me (with car) was taken after a particularly tricky drive on the Isle of Skye. The photo of Kathleen Jamie is from http://www.Guardian.com. The images of Goldilocks and the Three Bears  are taken from (in order from the top) Amazon, Wikipedia and allposters.com