Learning By Writing: reflections on blogging (i)

booksIt’s two years – virtually to the day – since I made my first blog post. I had no idea what I was doing that day: I simply typed into my barely-developed WordPress site and hit publish. The piece was different to my subsequent posts in that I didn’t write it offline, there were no drafts, I didn’t include images and it was relatively short. It was also different in terms of ‘voice’: more meditative and detached. Nonetheless, it has consistently been near the top of my blog post leader board and currently stands as my 6th most popular post (out of 82). This is not due just to longevity; there is no direct relationship between the number of views a post has received and when it was posted. My advice to anyone reading this who is hesitating about making that first post? Just do it!

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The focus and style of my first post puzzle me as my reason for setting up the blog had been more campaigning than musing. It was my frustration at the lack of provision for autistic adults with severe learning disabilities in my area that led to Living with Autism. My son had left his autism-specialist school that summer but had not been allocated any continuing provision. I was concerned about Dylan, who needed the structure and routine of a specialist environment, but was also anxious about how I was going to return to work. When a legal action against my local authority uncovered failures and omissions in Dylan’s care, my instinct was to share what I had discovered. My blog would be worthwhile, I told myself, if it helped other parents to get information I had not had access to.

If someone had told me, when I made that first post, that it would be two years before Dylan was allocated an appropriate placement I would have said I could not manage. And if I had known that I would have to learn how to support Dylan through some difficult ‘challenging behaviour’ I would have doubted my capacity to cope. If it had been explained to me, then, that in order to keep Dylan at home through these darkest of days I would have to make radical changes to my working life, I would have hesitated. And if I had been aware that surviving these years would come at high cost (to my poetry, my relationships and my health) I would have wondered whether I had the resources.

Perhaps it’s just as well we don’t know how the road ahead looks and what it will require of us. Most parents, when facing a challenging situation, give what is needed – and sometimes it is through such challenge that we discover just how deep our resources are and how much we are able to give. But I don’t think that we find this in ourselves alone; most of us also draw strength from some external force. For many of us, this is friends and family. For some, it is faith. For others, work or an interest or hobby. All of these have been important to me. I want to use this post, however, to reflect on the positive contribution of something I did not anticipate: blogging.

Learning through writing

batdetectorFor me, the most interesting writing is transforming; if I don’t come out of the process seeing the world differently, I’m not really interested in finishing it. This is true of any piece of writing, whether it is a poem, a short story or an academic article –  so perhaps I shouldn’t be so surprised that writing posts for this blog turned out to be a vehicle for learning and development.

If I want to be changed by what I write, I cannot be too in control of it. While I always have a defined topic in mind, and some key points or examples I want to communicate or explore, I try to leave enough space for a piece to breathe by itself once it has lungs. It can feel very scary when a piece heads off down a branch line, but I know that these diversions can lead to unexpected blessings as well as to dead ends. So I never plan a piece of writing (a poem or article or blog post) in too much detail or to the end because I don’t know, until I’ve written it, what I know. This might sound strange to people who don’t connect writing with thinking but for me the two processes seem to be inseparable; I simply don’t understand something until I’ve written about it.

I think for me this is to do with being a visual learner. I need to see how things connect with each other so I love moving sections of text around in a piece of writing to see if I can find new and surprising links. The connections between sections are important to me; I think this is about finding the progression and coherence in ideas. Perhaps my main preoccupation, however, is pattern and paradox; a concern with things that are similar and things that are different seems to underpin most of my writing. I suspect that it is through this re-organisation of material that (if I’m lucky) I happen across new connections and alternative ways of knowing.

So, at its best, writing blog posts has been a process of discovery; some of the pieces I have written have genuinely changed the way I think. This has particularly been the case for posts which focus on knotty abstract concepts, such as ‘independence’ or ‘voice’, and for sensitive topics, such as suicide and ‘challenging behaviour’ , but has also been so for posts with a more applied focus. Writing about the early interventions I made with Dylan when he was first diagnosed, for example, enabled me to understand the meaning and significance of the ‘treatments’ in a way I doubt I would have grasped had I not explored them through writing.

Writing is increasingly used therapeutically with professionals, particularly in health and allied sectors, and for several years now I have used it myself with staff and students in education in order to explore issues in personal and professional development. Keeping this blog has reminded me of the power of writing as a tool for exploring and transforming our knowledge, understanding and beliefs. Perhaps there should be more opportunities for parents and professionals to explore their experiences of autism through writing in structured and supported settings?

Making space

The other way in which keeping a blog has been helpful is in the space it creates for thinking and reflection. It’s a bit like having time in the therapist’s chair; setting myself a target of one post a week encouraged me to prioritise and make room for this. I would choose a topic from the scribbled list on my desk and spend half the week thinking about it (in whatever space I was in) before making the space to sit down and see where it would lead. Sometimes the posts would be written swiftly but if it were a thorny topic, or I found myself up a branch line, it could take longer than planned. Occasionally something I hadn’t expected came bowling in, elbowing its way to the top of the list, and sometimes (by contrast) the magic didn’t happen: there was no flash of pattern or paradox.

One thing I resolved when I started the blog was that I wouldn’t keep it at Dylan’s expense; on the ethics page of this site I identify a range of ways in which it could enrich Dylan’s life and a protocol to protect him from harm. One issue I don’t refer to on the ethics page, however, is the practical challenge of making space. When I set the blog up I told myself that it would be daft to be tapping away at a keyboard, writing about caring for Dylan, instead of actually caring for him. I had to find a space to blog which took nothing away from the time I spent with Dylan. How, as a single parent with a full time job, did I manage this? The short answer is that I sacrificed my diary and my poems.

The early morning hour before Dylan wakes, which I had previously used for writing, became ‘blog time’. Consequently, I haven’t done much with the manuscript of poems I was working on when I started this blog. In fact I have been so little involved in the world of my poems that it has been hard to think of myself as a poet at all some days. This would make me sad except that a) I’m not scared of fallow periods b) I have continued to edit poems that were already written c) the poems worth writing will still get written (albeit differently) and d) even if I never write another poem it was worth it.

The other sacrifice I made was to reduce the amount of time I spent writing a journal; a daily diarist from the age of 14, in the last two years I have allowed myself only one entry a week. Could I not have made the discoveries I refer to above through the process of writing in a journal? I doubt it. In fact I suspect that I have rarely discovered something new through a journal entry . I think this might be because I don’t pay the same attention to structure and organisation in a diary; as it’s handwritten, text does not get moved around and re-organised. I am therefore less likely to unearth pattern and paradox. I am also less concerned with logic and evidence in a diary entry and am far more indulgent and much less rigorous. Perhaps it is the one form of writing where I don’t expect transformation?

Being Provisional

dartofgreenAs I begin to think about writing poetry again I ask myself if blogging will have spoiled my poems the way squash once ruined my tennis (or so I claimed in the summer of 1986). What, I wonder, is the impact of one form on another? I am convinced that we take it into our deep subconscious; I know by instinct, for example, when I have written a sonnet-length piece.

When I started blogging I realised my posts were longer than most. I also realised, however, that I was incapable of writing to the more usual length of 1000 words and I have to work to limit myself to 2000; my natural ‘prose breath’ is, I suspect, closer to 4000 words. One thing I have enjoyed about the form, however, is its provisional nature. The WordPress facilities allow me to go on editing a piece even after it has been published; for me (for whom nothing is ever finished and everything can only ever be provisional) this is a marvellous format. I am an inveterate drafter and editor of my own work. Blogging allows me to go on polishing and I love it for this.

I have a reservation about this post-publication editing facility, however. If someone has ‘liked’ my post and I then edit it, how do I know they would still approve? I comfort myself (and, I hope, you) by limiting my edits to style not substance. If I change my mind about something as a result of comments from readers then I add a postscript or correct myself through the comment trail or in a subsequent post. Reader interaction with a blog is of course a central feature of the medium, particularly in relation to the capacity for learning and change. In the early days of my blog, when I had posted only a handful of pieces, a colleague suggested that my voice sounded ‘careful’. I replied that I checked my claims, of course, and was careful to make clear that my observations were based only on a single story. I realised later, however, that she hadn’t used ‘careful’ in the sense of ‘rigorous’; my colleague had meant I was holding back. Perhaps as well as being excited by the idea of a conversation with an international audience, I was nervous about the interactive format? My next post will reflect on this and on what I have learned through dialogue.

Transition To Care: the phoney time

It is nearly week seven of Dylan’s residential placement but it still feels as unreal as the ‘Phoney War’ my dad used to refer to when things you expected to happen didn’t materialise. It’s not that Dylan isn’t based at his new home: he is. But transition thus far has been so quiet that neither Dylan nor I really believe it. I’m not sure whether this is a good or a bad thing. Some days I tell myself it is going so well because of this phoney time. Other days I hold my breath; the reality will sink in one day soon and then I’ll wonder if I should have faced up to it before.

A bit of everything

phoney 002What I am calling phoney time arose through fortune as much as planning. The first stroke of luck was that after Dylan’s residential placement had been approved his day centre requested a month’s notice. Had this not been the case Dylan’s social care-funded day centre placement would have ended one day and his health care-funded residential placement started the next. Clearly this would not have been great from Dylan’s perspective (or from anyone’s except the funders) but this is standard practice and difficult to challenge. The 28 day notice period, however, provided a fortunate opportunity for a programme of interim activities involving home and both providers.

For the first three weeks of Dylan’s residential placement therefore he was based sometimes at his day centre, sometimes at his new home and sometimes with me. On the days Dylan was at his day centre he was observed by staff from his new home and on days when he was at his new home, members of staff from Dylan’s day centre provided guidance and support. This gave Dylan an opportunity to get to know care workers from his new setting as well as enabling the exchange of information, practice and expertise across staff groups.

This process was not without its challenges. The two settings had different values and practices which were evident in some of their approaches to supporting Dylan. By the end of the third week staff from the new home were keen to employ their own systems and establish consistency in Dylan’s care. Observing staff and managers trying to accommodate practices from another setting helped me to understand how confusing transition could feel for the autistic person at the heart of the process. The exchange of staff across settings gave those involved a glimpse of this through Dylan’s eyes.

So for the first three weeks of his placement Dylan got a bit of everything: his favourite activities (swimming, skating and library) continued with his day centre; other familiar activities (his exercise routine for example) were established in the new setting; and some new experiences (such as helping in a community shop) were introduced. During these shared weeks Dylan didn’t have to say goodbye to anything; he continued to see his familiar day centre staff and he saw plenty of me as well. This was partly because of the amount of ferrying between places I had to do during this time; Dylan and I spent hours together on the road, working our way through favourite CDs. Although the nights Dylan spent at his new home increased each week, he never stayed longer than his longest respite. So as far as I was concerned Dylan hadn’t yet left home; we were in a phoney zone.

Lots of mooey

Reighton 2015 125Dylan and I had a holiday booked for the fourth week of Dylan’s residential placement. This was not something I had expected earlier in the year; Dylan’s increasingly ‘challenging behaviour’ meant I had resigned myself to not being able to take him away this summer. Dylan loves his holidays so accepting that I could no longer support him by myself had been hard. But isn’t it just the way of things that the minute I made this decision my friend Julie asked whether we would like to rent a holiday cottage with her and daughter Ella :-)

There was a chance that supporting Dylan and Ella would be too much for us if they became distressed by each other or at the same time – and if Dylan became very upset I would need to protect Ella and Julie as well as myself. Julie would be able to offer support to me, however, and her presence might have a positive effect on Dylan. We would, we decided, try it; if it proved too difficult I would head home.

Happily, we had a good week. Dylan seemed to enjoy having other people around and we did lots of fun things. There was a focus on transport (steam trains, land trains, miniature trains, pedalos, boats, buses and chair lifts) but we also spent time on the beach, visited churches and a stately home, and ate at the Magpie Café. And Dylan, of course, got to spend a whole week with his ‘mooey’; that he had already left home could not have been further from our thoughts.

Phoney signs

phoney 005Before we left for our week by the sea it was agreed that when we returned Dylan would be based full time at his new home. Although we were still within the 28 day notice period it was also decided that joint staffing would end and the new setting assume responsibility for Dylan’s care. In this way our holiday would signal the end of the first phase of transition.

As I am on leave during August however, and able to spend time with Dylan, I am still around too much for him to miss me or think anything amiss; Dylan still hasn’t been away from home for more than three nights at a time.  As well as allowing me to spend time with Dylan, the timing of his transition has been useful in other ways. One thing that has taken me by surprise is the effort parents need to put into the process. In addition to the ferrying between places there are meetings to attend, paperwork to complete, care plans and transition documents to develop, emails to write, phone calls to make, admin to sort out (mostly relating to change of address and adjustment to benefit entitlements) and the not insignificant time (and money) on, of all things, shopping.

I had originally assumed that Dylan would take his belongings from home to his residential setting but was advised this would not be a good idea: remember how it felt when you left home, one of the care home managers observed, and how important it was to you that your childhood room was still there? So I’ve been buying duplicates instead. I’ve tried to introduce some differences but have played safe and reproduced key items like Dylan’s CD player, TV set and his toiletries and personal items. I arranged for some things to be delivered (like Secret Santa) while we were away and am introducing others gradually; a ‘big bang’ approach would be too overwhelming I decided (not least financially).

Some days I feel exhausted by the process. I suppose it’s not dissimilar to the way the bereaved are kept busy in the aftermath of a death and grieving must wait – or, to be less melancholic, the effort expended by parents helping a child to leave for university. But because of Dylan’s disability, and particularly because he doesn’t use speech to communicate, the time taken to record his care and other needs is enormous. I could not have undertaken this at any other time of year; had transition happened while I had work commitments I would simply not have coped. The second stroke of luck, then, was that the timing of Dylan’s transition could not have been more perfect.

Yesterday, while I was in the city, I called into my office to pick up some marking. That’s a sign that the summer is over, I told the friend I was with; this phoney transition will have to end then too. But, she observed, from what I had said things were going well for Dylan? Well yes – except I’m not sure he realises yet that he’s left home. Dylan still keeps his day centre diary in its ‘overnight’ spot (not even the place he kept it at weekends and holidays) and, even more worryingly, he refuses to leave any of his possessions at his new home. When I pick Dylan up he has packed everything and is ready and waiting to load up the boot of my car. Oh dear, my friend said: that’s not good.

Positive signs

phoney 003I’m quite sure this isn’t because Dylan is unhappy in his new home. On the contrary he appears to be having a fine time. Dylan’s programme has been full and varied with the familiar activities he loves as well as new challenges and experiences. He is always happy to return after he has spent time with me and he seems to be settling into his room and to the routines of the home. As well as getting used to new support workers, Dylan is responding well to a communication system which promises to make a positive contribution to his life. Apart from a minor incident on our return from holiday, he has been calm and happy.

The fact Dylan transports everything to and fro suggests, however, that he doesn’t yet realise this is his home now rather than his respite setting. Dylan has always been careful with possessions, taking responsibility for his belongings and managing them independently, so it is quite understandable that he would continue to bring these home with him. He only tries to bring home things he has seen me take or has taken there himself (not the things from Secret Santa). Perhaps, as far as Dylan is concerned, someone else uses the room he sleeps in on the nights he isn’t there (as happens with a respite bed)? And why should he respond to my suggestion: why don’t you leave these here Dylan? I have, after all, spent years telling him not to leave things behind. The fact I have duplicated his belongings doesn’t stop Dylan from bringing them home either; as he collects multiple copies of books and CDs, having duplicate hair brushes, toiletries and CD players is a bonus.

phoney 006Although a visual timetable helps Dylan make sense of his life in concrete terms (where he will be and what he will be doing) it cannot communicate more abstract concepts. ‘Home’ is a complex idea. It is more than the house where you spend your time; it is the place where you feel safe and loved. The circle around the house in the symbol system which Dylan uses is an attempt to communicate the emotional freight of a building, i.e. that this particular house is the one where you belong. This is not something that can easily be explained however; it is through lived experience that Dylan will come to understand this in his heart.

Some of what Dylan is experiencing is not specific to autism or learning disability; anyone moving house or leaving home for the first time would take a while to feel at home or become accustomed to living independently from parents. If the key difference in relation to Dylan is that it is harder to explain the process, maybe the challenge is to help him understand it emotionally rather than cognitively. It is perhaps for this reason that I haven’t written a social story about ‘leaving home’ for Dylan. The ones he has been offered so far focus on more immediate and concrete events. This week, for example, I was unable to use my car so had to collect Dylan by train. This provided a useful opportunity to encourage Dylan not to pack all of his belongings for the visit. Staff at Dylan’s residential setting wrote a social story explaining that he wouldn’t be able to carry everything on the train so should take just an overnight bag with him. This seemed to help and for the first time Dylan left things in his room.

It may be that these early weeks have been about allowing Dylan to absorb the experience of transition rather than trying to explain to him what is happening. There could, I realise, be challenging times ahead, especially as Dylan can have a delayed reaction to change. Maybe my ‘Phoney Time’ is another person’s ‘Honeymoon Period’?  In which case I should probably ask myself why I chose a military rather than a romantic metaphor. But whatever I call these early weeks, they have been helpful in alleviating rather than creating anxiety. And while I know the move to a specialised setting cannot magically eradicate the behaviours which triggered the placement, the early signs are positive.

Real time

phoney 004There is still one more piece I want to write before the end of phoney August. After that I will consider Dylan and I to have crossed the line and I will start a daily diary. Those posts will be different to the ones I have been writing in the last two years and will focus less on Dylan and more on the experience of separation from a parent’s perspective.

There are things I could say already: that it was almost harder to leave Dylan the night he was charming and chatty and held on to my hand, smiling and laughing, when I dropped him off. That there are nights I have walked my house crying, heaving with grief. That I have loved walking the hour it takes into the city instead of driving. That I have swum first thing in the morning. That I spent a day with a girlfriend without looking at my watch (except to make sure we didn’t miss the film). That I said ‘are you alright for time?’ to someone instead of being asked it. That it was with shock I realised that I could read during the day instead of only last thing at night. That I sleep through the evenings as if making up for years of exhaustion.

All this and it hasn’t yet begun…

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Images:

The photo of Dylan, Ella and Julie was taken in Whitby; I bought the wooden letters for the door of Dylan’s new room the other day, hoping they might help identify it as his space (he has some on his door at home); the ‘home’ symbol is from makaton but is commonly used across communication systems.

The Humber Bridge

humber5Before I had my own family I used to say that for every child I gave birth to I would adopt another. This seemed a small but realistic way of balancing the desire to have a biological child with the desperate need of already-born children for a family.

After Dylan was diagnosed I gave up my pledge; with an autistic child to care for, I told myself, it wouldn’t be fair and, anyway, I probably wouldn’t be approved to adopt. Later, other promises would be adjusted. I couldn’t, I realised, volunteer regularly or even for Crisis at Christmas; Dylan needed me and it wasn’t possible to undertake such commitments with him in tow. So I made donations to charity instead; I might not be able to give my time but I could at least do this.

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‘I’m thinking of volunteering’ I said to my daughter the other day. Just weeks since Dylan’s residential placement had been approved and already the idea had risen to the top of my newly-shuffled priority pack. ‘Good’, she said, ‘I’m glad to hear it’. My daughter understood the new imperative; not just my earlier idealism but the desire, now that Dylan is receiving help from society, to give something back.

I’m not sure the job I do has given me many useful skills but I’m hoping that I acquired some from my years supporting Dylan. At the moment I’m open-minded about what I might offer but am drawn to end-of-life care. The only thing I would rule out right now is autism. ‘I need a break ‘ I told my daughter. But it’s not just that. If I volunteered my time to autism I might as well be with Dylan. It has to be something different; a bit like a collective where you trade and exchange.

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humber bridgeI remember making the case for collective child rearing in an undergraduate seminar in the early 80s. I can’t imagine how we got on to the topic but perhaps the discussion arose from the study of a political thinker. Rousseau maybe or Dewey. I’m not sure. What I do remember, though, is that I was a lone voice that day. After arguing valiantly but without effect I turned to Dr Robinson and appealed for his support against my peers. But he wouldn’t give it; having children, he told me, was not motivated by a will to improve society but by the desire to perpetuate the self.

I understood this a little better once I’d had my own children. Perhaps having an autistic child added to my growing realisation that families are private entities, managing themselves according to their own value systems. An autism diagnosis forces us to confront aspects of our practice which might previously have run humdrum and unexamined. I found myself weighing the cost and benefit of every decision: whether to be relaxed about diet or intervene; how to manage meltdowns; when to use directive approaches and when to be non-directive. Sure there was professional advice for parents but ultimately the choices were my own; there is thus no less variation in how autistic children are raised than in that found across all families.

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For some parents the desire to raise a family without interference from the outside world is strong. I suspect there are different reasons for this: the parents whose own upbringing was so troubled they want to do things differently, their own way; or the mother who has so little power over her life she wants control of the way her children are raised at least. I once knew someone like this. I wasn’t close to him (he was the husband of a friend) so didn’t have a context for his parenting except that it was NYC in the early 90s. Every morning he would take the bus from their Central Park apartment and head downtown with the baby. Why is it, he asked me when I visited, that people think it’s OK to interfere in your life when you have a baby? A private man, he was not enjoying the way fatherhood had turned him into public property; strangers, he complained, would stop to talk at and even touch his son. These unsolicited approaches were a source of great irritation to him.

I remember him telling me how the baby had been crying one day while they were riding the bus. A woman seated behind started to dispense advice. He needed to take the baby out of the sling. He should give the baby a pacifier. That baby needed to get into a routine. Suddenly, he told me, he’d had enough. He took out a pad of paper and a pen and thrust them at the woman. Lady, would you write your name and telephone number down here for me ? Because the next time my son’s crying at 3am in the morning I’d like to call you up and ask your advice. He reported this with glee, happy he had found a way to tell this member of the public to butt out of his life.

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humber8To make a call for help at 3am in the night you have to be desperate and my friends were not – they were simply new parents dealing with the usual demands of a not-unusually unsettled baby. A desperate night is one when you are scraping poo off the walls yet again (I haven’t done that for years but will never forget when I had to, repeatedly). It is when you have lain next to your screaming child for five hours and they are still screaming. It is when you fall down the stairs because you are dog-tired from weeks of being up all night. It is when you drive 100 miles in darkness trying to settle your crying child. It is when you sit in the garden or barricade yourself in your room because you fear you will be hurt by your anxious son whose needs you have failed to understand well enough to help and who is in meltdown, a danger to you and to himself. It is when the house finally falls silent and you go to bed and cry yourself to sleep because you couldn’t be better or make a difference. It is when you stay up all night googling for answers or writing long letters, asking for help, which you know you will never send.

These are just some of the ways to become desperate in the night. There are others (some harder). I’ve heard parents of autistic children say that you only get help when you get desperate. I’ve said it too. It’s right, of course, that scarce resources should go to those in most need but it scares me (I mean it really did scare me) that the trigger for allocation is a crisis.

Some years ago Dylan and I went for a walk one summer with two autistic boys and their mothers. I had been invited by the woman whose child’s 12th birthday we were celebrating but didn’t know the other mother. Still, we talked the same easy language that parents of autistic children tend to when they are together. At some point we swapped stories about autism services within our Local Authority. They just don’t seem to hear, the mother I had just met complained. They don’t listen because they think I’m coping. But I can guarantee that if I go within 50 miles of the Humber Bridge they’ll listen.

We didn’t have to ask her to explain.

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humber4The Humber Bridge is a beautiful bridge over a wide river in the east of the county where I live. But in 2006 the way I would think and feel about that bridge changed forever when a mother and her autistic son climbed over the railings and down onto the underbelly of the bridge and jumped.

Alison Davies and her 12 year old son Ryan were caught on CCTV camera moments before they fell 100 feet to their deaths on Easter Day. The Humber is a tidal river with sands which shift so dramatically it has to be re-charted each week. In such conditions, finding Alison and Ryan was difficult. It was four days before Ryan’s body was discovered, upstream of the bridge, and it would be some time before his mother’s body was found. In the days after the tragedy, while the police waited for the river currents to surrender Alison, the media speculated on what had led her to the bridge.

CCTV footage had recorded the pair arriving, smiling, at Hull railway station in the morning. They no longer lived in the town but, we would learn later, it was a place where they had once been happy. There were reports of an interrupted 999 call having been made from Alison’s mobile phone moments before a camera on the bridge recorded them falling – not together but 8 seconds apart.

We will never really know what happened that day or why. The tragedy was, commentators agreed, a result of the strain Alison was under as a single mother of an autistic child (Ryan’s diagnosis was Fragile X Syndrome). The Independent reported that the closure of a parents group had represented a significant loss to Alison who had no other support mechanisms apart from limited help from her mother. A friend of Alison’s, also the carer of disabled children, said: “She just didn’t get the help she needed. You have to fight for everything when you are looking after children with disabilities because if you don’t fight for it, you don’t get it.”

And yet, it seemed, in the days before the tragedy Alison had been feeling quite positive. She had started a new job, passed her driving test and was tackling some DIY projects at home – challenging for anyone, never mind a single parent with caring responsibilities. The picture which emerges from neighbours is of a well-liked mother and son with an active and happy life. As the newspapers later reported, however, this was a veneer; Alison Davies was, in reality, struggling to care for her son.

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humber6Sadly there have been similar cases, often involving mothers who had appeared to be coping. I have listened to people express astonishment at such tragedies and suggest that had they only known they would have helped. I remember reading a request by one woman, in the aftermath of a similar case in America, that mothers bring their autistic children to her, rather than kill them, ‘in the middle of the night if need be’. 

So we are back to that call at 3am (the one my friend’s husband threatened the woman on the bus with). Such night calls may not be easy to receive but they are even harder to make in a society which does not encourage collective responsibility for parenting. And if you are a family in crisis there is a tipping point beyond which it becomes hard to even pick up a phone; holding on to any sense of your own agency, or a belief in the power of others to help, is difficult when you are at the bottom. In a note which Alison Davies left she referred to having failed as a mother and of the need to ‘end the pain’. She didn’t want her family to ‘have to worry any more’ about her and Ryan. ‘Clearly Alison was in distress’, a police investigator observed: ‘clearly she felt a burden and clearly she felt that she wanted to relieve her family of that burden’.

I recognise some of these feelings: doubting you will ever get the help you need; not wanting to ask for it; feeling helpless; wondering if your child might be better off without you; the impossibility of life alone. When you do your best and it doesn’t seem to make a positive difference to your child you can question whether there is anything anyone can do. You are the mother. You love your child more than anyone else in the world will. If you can’t help, who can? These feelings are natural and some may even be necessary. But if they combine in a particular way on a particularly bleak day or night, their impact can be devastating.

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humber3Later, in August, the coroner would refer to Alison Davies’ ‘life of despair’. Although she was struggling to cope with her son’s increasingly violent attacks, Alison was determined that Ryan should not be taken into care. ‘She loved Ryan so much and she tried so hard; her bank of resilience had been depleted ‘, her family said in a statement following the inquest. Alison was, they added, ‘a wonderful mother’.

It emerged that Alison had a history of depression and suicidal tendencies which made her and Ryan particularly vulnerable. Her family had intervened to help the mother and son on previous occasions. The call from Alison’s mobile phone had, apparently, been made 30 minutes before the tragedy but was not effectively followed-up. The inquest was told that Ryan was not pushed but jumped independently; it was noted however that Ryan had no understanding of danger and would have jumped, with encouragement, if told he could fly. The second person falling from the bridge was Alison. The coroner recorded a verdict of suicide on her and a verdict of unlawful killing on Ryan.

During media reporting of the tragedy and inquest there were frequent references to other such cases, no less tragic. The Guardian reported that the incident had led to calls ‘for more respite care for families with autistic members’. The Independent, meanwhile, quoted a National Autistic Society spokesperson as saying that: ‘if one good thing comes out of the tragedy it is an awareness of the lack of support for respite care. Local Authorities are reluctant to pay for support.’ Other newspapers reported sympathetic interviews with parents of autistic children, explaining some of the stresses of living with autism and the benefits of regular respite care.

I would hazard that every one of these tragic cases could have been averted had there been a timely response to the family’s need before they reached the tipping point. For an autistic child to be safe and to flourish, the family that provides care also needs to be well. Parenting an autistic child can become more challenging with adolescence and adulthood but instead of increasing with age, support falls away. Is it any wonder that parents are pushed to breaking point, especially if they have few support networks or are battling an existing mental health condition? I’m one of the lucky ones. I’ve got support. But I would be lying if I said that I’d never, sometimes, tried to think of places where Dylan and I had been happy.

*

humber7In the US, where there have been similar cases, there has been much discussion in the press and much condemnation of the mothers on social media. I understand this response but worry that a backlash against individuals obscures the spotlight from shining, as I believe it must, on all of us. I am not questioning that Ryan was unlawfully killed. Nor am I suggesting that Alison’s actions could ever be justified or excused. I do believe, however, that we are all involved in these tragic deaths because, in a civilized society, caring for vulnerable children and adults is a responsibility we share.

While it is not natural or intuitive for us to adopt a collective approach to parenting, we need to be better at offering and receiving support. Alison Davies seems not to have found this easy – certainly she was reluctant to let others care for her son. And who can blame her? There are so many awful reports of care standards that it is hard for parents to trust their children to others. But instead of closing down specialist services because they have failed in the past, we should be improving them. If we put our energy into achieving excellence in the care system, with effective mechanisms for supporting families before they are in crisis (without creating a sense of failure or fear in parents that they are letting down their child) then we might help avert at least some of these tragedies.

The more individualistic a society, the less likely it is that the vulnerable will survive; certainly Dylan’s disability means he will only ever flourish in a society that prioritises social care. If we are to emphasise the importance of human flourishing, rather than human capital, we have to develop more cooperative and community-based approaches to supporting one another. With so much concern about our ability to meet the cost of an increasing care sector, developing sustainable models of support has to be a priority. I would hazard that those who receive support from others, offer it in return. Hopefully, as I adjust to no longer being a full time carer, my own life will bear this out.

*

Disturbed by the tragic case of Alison and Ryan Davies, I kept news reports of these and similar stories determined that one day I would write something. I haven’t got around to the poem I thought I might write but let this stand, instead, as my small wreath. RIP.

Acknowledgements:

I have had these images of the Humber Bridge on my PC for years. I’m unsure of the sources now but hopefully they are from public domain sites such as Wikipedia.  In this post I refer to media cuttings of the incident (April 2006) and the inquest (August 2006) from The Independent, The Guardian, The Mail Online and the BBC.

Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

*

IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

*

When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

*

The piece I had planned to write (which I referred to in my previous post) is coming soon…

And Finally

more garden in may 009I am relieved to report that my request for a place at a National Autistic Society home for Dylan cleared the final hurdle last week and was approved. I’m not sure the implications of this have sunk in yet but it is what I have been advocating for and I am pleased to have achieved this for Dylan at last.

It is two years since I set up this blog. I started it because I was dismayed by the lack of options for Dylan when he left school. Initially my concern was that he wasn’t allocated enough day care to enable me to get to work (which I needed to do as a single parent) but I soon realised the issue was not how many hours Dylan was or was not entitled to but the shortage of appropriate adult provision.

This blog records Dylan’s difficult transition to the adult sector and its impact on us both. My posts during the first year described my attempts to secure education provision for Dylan, having established his entitlement to this through a legal action against my Local Authority. While I waited for a suitable post-19 setting to be developed, Dylan attended two different part-time placements during the week (one social care and one education-funded) and was cared for some of the time by me. That year was confusing and chaotic. The placements weren’t joined up and there was no continuity of care for Dylan. Leaving school was always going to be a difficult transition for Dylan but replacing a full time setting with a mixture of part-time care escalated the anxiety.

garden june 004Who knows to what extent this hotchpotch provision triggered the behaviours which emerged in Dylan at the end of that first year. Since then, my posts have focused on my attempts to understand Dylan’s ‘challenging behaviour’. My search for explanations has focused on physiological as well as environmental factors but the consensus is that the underlying cause is psychological. It seemed to help Dylan when it was agreed he could attend his day centre full time rather than continue with the miscellany of provision he had been accessing. Even with adjustments to his care, however, it was clear that Dylan needed more support than previously in order to stay safe and to access the community.

Within a year of leaving school, therefore, Dylan’s profile and the priorities for his care had shifted from continuing education to continuing health. Some of my posts during the last year describe my attempts to secure health sector funding so that Dylan’s needs could be met. Perhaps my earlier battle for education funding gave me the confidence to challenge an initial decision against health funding for Dylan but I would urge any parent in a similar position to do the same; having to appeal decisions seems to be increasingly standard so don’t expect the first judgement to be in your favour. When I eventually secured health funding for Dylan, more appropriate options for him opened up.

garden june 003When Dylan left his National Autistic Society school in the summer of 2013 a residential home  was being established for school leavers who needed higher levels of care. Dylan was familiar with the setting as he had stayed there overnight occasionally (it was previously used for respite for children attending the school). Some of his peers would be moving into the home and Dylan knew some of the staff too. Naturally I requested a placement for Dylan, thinking it would offer a seamless transition to an appropriate setting.

My request was turned down two years ago, partly because Dylan didn’t have health funding at the time but also because my Local Authority’s policy is to place adults in the community, rather than residential care, and not to fund placements out of city. My request for Dylan to be allocated a place at the NAS home failed against both criteria. This rigid approach is, I would argue, short-sighted. While I understand the ideology (post-Winterbourne) it remains the case that for some young people a specialised residential placement is appropriate. Dylan, for example, needs the customised living and outdoor space which residential care offers as well as access to a team of professionals rather than the single care workers who typically support adults in the community.

WP_20150712_18_21_50_ProFinally, after months of crisis and distress, Dylan’s need for such provision has been accepted; two years (almost to the day) since he left school, the NAS home I originally requested is the one that has now been approved. Although the home lies just beyond the city edge, I would have happily accepted somewhere within the authority had anywhere been suitable; indeed I pulled out of another out-of-city placement partly because I was reluctant for Dylan to leave his community. When I tried to identify a local residential placement, however, there was nothing adequate or appropriately specialised. If local authorities cannot make suitable provision for autistic adults with high care needs, they are not in a position to refuse to fund specialist placements out of city (or borough).

Because the setting that has been approved is a familiar environment for Dylan, transition so far has seemed relatively comfortable  (although I have been warned that behaviours are likely to increase initially). The plan for supporting Dylan into his new home is the best it could be; although the placement started this week, Dylan will be jointly supported by staff from his day centre and residential home and will continue to live partly with me for the first month. A holiday planned for August will mark a natural end to this initial transition period, after which the aim is that Dylan will be based at his new home.

more garden in may 018I know that there will be challenges ahead for us both. Although I was relieved to receive the news I have felt utterly exhausted since and have had moments of terrible doubt and anxiety. I tell myself this is surely natural. On Monday night – the first day of Dylan’s placement – he stayed overnight at his new home so I could fulfil a long-standing poetry commitment. I wasn’t sure this was what I needed on the day as I felt tired and emotional. On reflection, however, it was an appropriate way to mark the start of this next phase of our lives, living more independently of each other. The poetry reading was also useful in distracting me from my anxiety and preoccupation with the new arrangement; better than sitting at home, fretting.

A friend, recognising something of what I was going through and with the wisdom of already having waved goodbye to a grown-up son (though not in the context of autism), sent me a poem yesterday. The piece, Walking Away by C. Day Lewis, ends like this:

I have had worse partings, but none that so
Gnaws at my mind still. Perhaps it is roughly
Saying what God alone could perfectly show –
How selfhood begins with a walking away,
And love is proved in the letting go.

garden june 008I can see that even with the extra challenges confronting a parent of a disabled child the ‘letting go’ still has to be faced and embraced. Our life together is changing, I tell myself, not ending.  Although like Dylan I will live with autism forever,  I will no longer be living with it in the same way. Over the next few months, therefore, this blog will change and in due course come to an end. It has served its original purpose and Dylan and I have grown beyond its focus.

My plan is to keep the blog going, however, while I learn to let go. I have in mind to use it as a diary space where I can record my thoughts and feelings in the first 100 days of living without autism. I’ll start counting when Dylan moves full time into his new home after our August holiday. Before that, however, I have two more posts to write. One is on a difficult subject which I’ve been meaning to confront since I set the blog up; I have been ducking it but cannot any longer. The other post will offer some reflections on what I have learned from this blog and the ways in which it has been a positive force for me (and I hope Dylan) in the last couple of years.

And finally, I want to thank you (yes, you) for reading, for your encouragement, and for your friendship and support.

*
Images:
The photographs were taken in my backyard in May and June this year. I have never been a gardener and I don’t have much outside space but recently I have spent more time in my yard and found it therapeutic. I have come to think of this as a safe space where I can let go of some of the anxieties of being a carer. I think I will always associate it with this period of my life with Dylan.

Autism And The Alphabet: Dylan and the ‘W’

Munch 003My last couple of posts have focused on Dylan’s love of paintings and my attempts to understand the role of art in his life. In order to do this I identified imagery which Dylan seems to respond to and constructed a therapeutic narrative around it. A comment on my last post, however, reminded me that I was making assumptions about Dylan’s viewing. How could I be sure Dylan was responding to the images in a painting? Perhaps he was attracted by the light or by a picture’s lines?

My initial reaction to the question ‘why don’t you ask Dylan what he likes about the paintings?’ was that I couldn’t. He (I mean we) don’t have the language. But the question set me thinking. Maybe Dylan was indeed gazing at darkness rather than thinking ‘rock’, or enjoying the quality of contrast rather than the thing I call ‘a cross’. I convert the light and the dark, the colours, shapes and lines to concrete nouns for Dylan but perhaps what he likes about the paintings aren’t the things I give him words for.

Maybe I need to view Dylan’s paintings with the part of my brain which sees spatially instead of with language. Rather than labelling objects in a painting I could offer Dylan the spaces and shade. Such an approach would fit with what I have already learned about the way he sees the world. Elsewhere I have described how Dylan sees hair on trees instead of leaves and tells me that the cheese is crying when I melt it. I have suggested that Dylan’s lack of language might allow him to experience phenomena more intimately and intensely than I am able to because he uses his senses rather than these inadequate words. Dylan’s perception of the world, I have speculated, may be right-brained whereas mine is left; where I see ‘curtain’ Dylan might see silver light spilling from a vertical edge.

See saw

W 005I must have been thinking about this a few days later when I picked up a magnetic letter from Dylan’s bedroom floor. Because I was about to say ‘Oh look Dylan there’s a letter’ or ‘look here’s a W’ when I remembered Elisa’s question ‘Why don’t you ask Dylan what he likes about the paintings?’. Could I be open-ended about the W? Could I ask Dylan what I had found on the floor?

Oh look. What’s this Dylan?

See saw

I stared at him in shock. Then I asked again.

See saw

You should have seen my face :-) I cracked such a grin. What a gift. Dylan sometimes hands me these, unasked for, but I might never have received this one if I hadn’t asked the question that way. The see-saw was my first open-ended gift.

Seeing W

wikipedia.orgDylan’s magnetic W is the same shape as the version produced by a keyboard: not actually ‘double U’ (as the letter is pronounced in English) but rather ‘Double V’ (as it is pronounced in French). Although this version of W is commonplace today, when I was a child it had curves not angles. In handwriting lessons we were taught to practice forming our Ws by joining Us together and moving our hand briskly and freely across the page, line after line.

UUUUUUUUUUUUUUUUUUUUUUUUUUUUU
UUUUUUUUUUUUUUUUUUUUUUUUUUUUU

Just like Dylan I made letters into pictures. My friends and I thought we were terribly risqué when (collapsing in giggles) we decorated our UUs with squiggles and dots to turn them into bottoms and bosoms. Perhaps I didn’t see a see saw because of the cursive way we wrote our Ws but I can’t help thinking that had I looked carefully – as Dylan does – I might have seen a swing boat.

Hearing W

publicdomainpicures.netAs well as the mismatch between the visual ‘W’ and the heard shape ‘UU’ I encountered other problems with this letter as a child. I remember sitting on the back step of a friend’s house on a warm day one long school holiday. We had got the writing bug and were sitting in the sun with paper and pens. I don’t know how old we were – perhaps seven or eight, maybe a little older. I remember my friend asked her dad, working in the drive nearby, for a spelling.

How do you spell daffodil?

D- a- double f – o – d – i – l

I had never heard anyone use the ‘double letter’ device before. I remember I felt anxious about the letters I had heard but didn’t have the confidence to ask my friend’s dad to repeat them. I did my best but something seemed wrong with my word:  Dawfodil. It looked a bit odd. I wasn’t going to question my friend’s dad though.

Suddenly he was hovering above me, looking down at my page: ‘What have you got there?’, he asked, ‘Why have you written a W?’ He had said W I told him. He checked his daughter’s writing; she hadn’t made the same mistake. My friend must have heard the double letter expression before but it was unfamiliar to me; I had assumed a letter with a ‘double’ sound in it meant W. Afterwards I would use the double device triumphantly and often:

M – i – double s – i – double s – i – double p – i

I’d do well to remember the confusion and anxiety I felt about my dawfodil though; it might help me understand just a stamen of being Dylan.

Teaching W

W 003Because the names, shapes and sounds of letters aren’t intuitive or easy, attempts have been made by practitioners and publishers to develop teaching resources and methodologies. Whether or not these help probably depends on an individual child’s learning style. A kinaesthetic learner, for example, might respond to the Steiner approach to learning the alphabet through music, movement and drama. This method involves children physically taking on the attributes of each of the letters of the alphabet and embodying learning through the senses. The magnetic letters which I use with Dylan are also aimed at children who learn through their senses as they can be experienced by touch and smell as well as sight.

amazonw2As a phonetic method the commercial resource Letterland focuses primarily on sound. Available in a range of formats (jigsaw, books, video etc) it works through the association of each letter with an alliterative character (human or animal). So, for example, C is Clever Cat, J is Jumping Jim and W is Walter Walrus (though when my children were small it was Wicked Water Witch). Many children respond well to the Letterland alphabet – I remember my step daughter liked it and it really did seem to help her developing literacy. It doesn’t suit every child though; my daughter was lukewarm about it and it never held any interest for Dylan. Now, perhaps, I can understand why; Dylan doesn’t hear a Walrus, he sees a see saw.

Just as I put a  ‘w’ in daffodil because I thought I heard one, perhaps Dylan visualises see saws in words with w:

Yelloseesaw [Yellow]

Seesawonderseesawall  [Wonderwall]

Seesawindoseesaws  [Windows]

I have been wondering what else Dylan sees in the letters of the alphabet. One day I will ask him but not all at once as it would overwhelm him. I’ve tried to guess though – O could be wheel perhaps:

Twheelwheelkit  [Toolkit]

Wheelseesawl  [Owl]

Mwheelther  [Mother]

W 007Looking again

If Dylan sees letters as objects unconnected with the sounds they represent then it must be very hard for him to make sense of letters as signifiers. To my knowledge the only group of letters Dylan recognises is ‘Dylan’ and this is because he has been exposed to them as a sequence rather than as individual characters. What might be the implications for supporting literacy development in children and adults with autism and learning disability? Based on my limited observations of Dylan I would hazard that for some young people the ‘look say’ method might be a more appropriate approach than a phonetically-based system. Learning words certainly seems more effective than learning letters for Dylan and if I had his early years again this is probably what I would focus on. Then again, that way I might have missed the see saw…

W 014

Images:

The daffodils are via publicdomainimages.net; the swingboats are via wikipedia; the Letterland book is via Amazon and the other photos are taken by me. The picture of Dylan on a seesaw (aged three) was taken in France in 1997.

Dylan’s Pictures: stunned into words

barnes thesundaytimes.co.ukIn his book Keeping An Eye Open Julian Barnes claims that ‘it is a rare picture that stuns or argues us into silence.’ In my last post I noted that the opposite is true for Dylan; a few special pictures can stun him from silence into words. Reviewing the therapeutic approach to art advocated by Alain de Botton, I asked whether such a framework might help me to understand Dylan’s response to art.

june 15 023 Here I explore that possibility by applying de Botton’s methodology to Dylan’s favourite pictures. To do this I identified the pictures in our home which Dylan particularly likes; it is clear which these are as Dylan spends time with (and sometimes talks about) them in contrast to others in the house which he ignores. I then grouped the pictures according to possible ‘function’. Although I have aligned my categories with some of the functions described by de Botton I started by generating my own functions, grounded in observations of Dylan, rather than attempting to apply de Botton’s schema. This seemed appropriate as de Botton’s typology was developed from a neurotypical perspective and art may have alternative functions for an autistic adult. From this process I identified four categories which I discuss below.

a) Remembering: the comfort of mother

june 15 004One summer in Margate I stepped inside a vintage shop wondering if Dylan would be patient while I rummaged through clothes. A print of Tamara de Lempicka’s Mother and Child (1931) on the shop wall caught Dylan’s attention. He stood transfixed by it until closing time when (with difficulty) I encouraged him out. I gave Dylan a print of the painting for his 18th birthday the following year; it hangs above his bed and I think is one of his favourite images. I sometimes wonder if its function is along the lines described by de Botton and that its primary purpose is as comforter. My attention is also caught by the unusual eyes, however; perhaps it is those which attract Dylan to this painting?

june 15 006Some of Dylan’s other favourite pieces involve female forms which I think Dylan connects with mothering. Dylan sometimes names Claude-Emil Schuffenecker’s Madame Champsaur (1890), for example, as ‘mooey’ although I am fairly sure he knows I am not (and was not) the woman in the painting. I have written elsewhere about Dylan’s deep memory of his encounters with this painting while in France and I think he perhaps links ‘the woman with a fan’ to his experience of being a child. Dylan is particularly fascinated by Madame Champsaur’s hands and often says ‘hand’ while looking at the picture. This interests me as when Dylan was young he would frequently take my hand and match my palm against his own, placing them next to each other as if comparing them. He doesn’t do it anymore but I used to think of it as Dylan’s way of working out that he was connected to me.

I could cite other examples of Dylan responding positively to mothers in art; the de Lempicka and Shuffenecker are particular favourites but they are illustrative of a broader preoccupation with madonna imagery. This category aligns fairly well with de Botton’s discussion of William Dyce’s Madonna and Child (which I referred to in my previous post) and with his suggestion that such an image might offer ‘comfort’ to the viewer. In terms of de Botton’s seven functions I would say that the examples I give here are about ‘remembering’.

b) Self-understanding: belonging and community

june 15 014Dylan has other favourite pictures which incorporate representations of the female form but not in ways which he connects with ‘mothering’. When Dylan first paid attention to the figure in this Oxfam poster I thought it might be the representational nature of the image which appealed to him; symbols are easy for Dylan to make sense of and he can find meaning in line and abstract drawings quite quickly. The figure in this print was the first one which Dylan appeared to recognise and respond to when he was young; it is also the first picture which ‘stunned Dylan into words’. I remember my amazement when Dylan pointed to and named ‘knee’, ‘arm’, ‘elbow’, ‘chin’, ‘nose’, ‘eye’, ‘hair’, ending with a triumphant ‘woman’. Dylan still engages in this naming. I sometimes try to change or develop the features Dylan names but he is not having any of it; in this sense Dylan’s engagement with the picture has become routinised. I’m interested in Dylan’s focus on anatomy. Perhaps it is through this he develops a physical sense of self? This poster belonged to Dylan’s biological father so I enjoy the fact that Dylan has such feeling for it.

june 15 017Gauguin’s Breton Peasant Women (1894) is a particular favourite of Dylan’s and one which I often find him staring at in the evening in the dining room where it hangs. At such times the picture seems to induce a trance-like state. At other times, however, Dylan likes to talk to me about the picture, naming its features in a particular order as with the Oxfam poster. What interests me about Dylan’s relationship with the Gauguin, however, is that the things he names are inanimate rather than figurative: stick (in one of the women’s hands); bag; rock; sand; shoe. Here, then, Dylan seems to be focusing on the physical world the women inhabit rather than on the women themselves.

I have described these pictures as developing a sense of ‘belonging and community’ as Dylan seems to be responding to the physical experience and the location of the figures in these pictures. This most closely approximates de Botton’s function of ‘self-understanding’.

c) Re-balancing: the love of order

june 15 005Like others with ASC Dylan can appear more interested in objects than in people. His attraction to the material world is not random and indiscriminating however; he is drawn to pattern and symmetry and to phenomena which shape-shift (such as water and steam). Dylan’s interest in architectural drawing could be considered stereotypically autistic; the attraction of this drawing of Ulm Cathedral seems to be in the number of windows which Dylan likes us to count together.

june 15 020Dylan’s interest in this French exhibition poster, meanwhile, focuses on the car and, more specifically, the wheels. Dylan likes me to name parts of the car such as the lamps and windows but it is the shape of the wheels which seem to bring him particular satisfaction. Dylan has a natural curiosity about the material world and an appreciation for buildings and machines. I’m not sure I realised this when he was younger but I think it is clearly expressed through his orientation to art.

Dylan’s enjoyment of these prints is perhaps illustrative of the impact of neurodiversity on visual orientation and perspective. If I were to analyse what it is that he responds to in these example pictures I would say it is order and pattern. This may correspond with de Botton’s function of art as ‘re-balancing’ us.

d) Growth: nature and spirituality

june 15 003Dylan has what I think of as a spiritual dimension which he often seems most in touch with near water and in light. He has a strong orientation to nature and a particular interest in solitary figures in landscape. I bought this watercolour in 2008 at an art fair in Portreath, Cornwall; I wanted to support a local artist (Beth Edge) and I liked that it depicted a spot where Laurence Binyon is reputed to have composed the poem ‘For The Fallen’. When I chose the painting I don’t think I noticed the detail which would subsequently captivate Dylan: two figures sitting on a bench by the Pepperpot, looking out to sea. I wonder if it is the grandeur of the seascape he is absorbed by as much as the tiny human smudges gazing at it?

Munch 003In Dylan’s very favourite picture a man sits alone at a window looking out across a body of water in moon and lamplight. This Munch painting (Nacht in Saint Cloud, 1890), reproduced as a poster for an exhibition I visited before Dylan was born, is possibly the most important thing in Dylan’s life. It is so crucial to him that I have written into my will that it must stay with Dylan always. I don’t know what it is which enchants Dylan about the image but I have some clues in the words it stuns him to. Dylan asked me, a long time ago, for a word for the reflection of the window frame: ‘it’s a sort of cross on the floor’ I suggested. Later he told me that the diaphanous light at the left hand side of the painting is a curtain. Dylan also fixes on the light above the seated man. All my attempts to offer other details from this dark, indistinct print have come to nothing: ‘Lamp’, ‘Curtain’, ‘Cross on the floor’, Dylan chants.

If I were to apply de Botton’s functions of art to these paintings I would perhaps identify them as addressing the need for ‘Growth’. Analysing their content for ‘the concerns of the soul’ (as de Botton terms it) I might suggest that the metaphysical themes and imagery focus the viewer on the concepts of awe or grace. Maybe Dylan is responding to a compositional aesthetic as much as to a painting’s content, however. An artist once explained the ‘Golden Ratio’ to me and I have sometimes wondered if the relationship between lamp (top), curtain (left) and floor (bottom) in Nacht in Saint Cloud offer Dylan that sort of beauty. Or perhaps he has an intuitive feel for other artistic formulae such as the ‘Serpentine Line’ or ‘Venetian Secret’? The explanation, I suspect, will remain Dylan’s secret.

Rethinking autism and art

‘Art therapy’ usually involves attempts to engage people in producing art. While there are some valuable examples of such work I would argue that it isn’t appropriate for everyone with an Autistic Spectrum Condition. Dylan has no interest in participating in art sessions but, as I hope I have shown in these posts, art is something which is important to him and from which he benefits. It is surely the case that just as you don’t have to play an instrument in order to enjoy music, so you don’t have to hold a brush to derive pleasure from art. An art appreciation model is, perhaps, a therapeutic approach with potentially broader application within autism education and care.

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Note:

Other prints in the home which Dylan enjoys, and which I could have included as further illustration of the categories identified in this post, include La Toilette by Toulouse-Lautrec (1896), a portrait of Vivienne Westwood and a vintage railway poster. Pieces which Dylan ignores include reproductions of work by Schiele, Picasso, Blake, Rossetti and Macke as well as two other de Lempickas, some original paintings by local artists and various posters and maps.

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References:

Julian Barnes (2015) Keeping An Eye Open: Essays in Visual Art. Jonathan Cape
Alain de Botton and John Armstrong (2013) Art as Therapy. Phaidon Press
Grayson Perry (2013) The Reith Lectures, 1-4 [for the ‘Serpentine line’ and ‘Venetian Secret’]

Episode One of Keeping an Eye Open by Julian Barnes (BBC Radio 4 Book of the Week, 22/06/15) is available at: http://www.bbc.co.uk/programmes/b05zhhhy

*  This post builds on my earlier blog post:  Art And Autism:  Psst you. Hey kid. Yes you.