The Book Hedgehog

In a previous post I lamented the departure of a member of staff who had coordinated the social enterprise activity at Dylan’s setting. During the recruitment process for a new social enterprise coordinator, the workshop and shop at the residential setting remained closed to members of the public and to residents.  This meant that there was a gap in Dylan’s daily schedule which had to be filled with alternative activities. Although staff did their best to keep Dylan purposefully occupied, he was more unsettled during this time and clearly missed his work in the shop.

In my post in December I described how, on the run up to Christmas, Dylan had been insistent that the shop be opened so that he could make the holly wreaths which he associated with that time of year.  I reflected:

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

I am very happy to report that a new social enterprise coordinator is now in post and that Dylan has resumed the ‘anchoring rhythm’ of his daily work in the shop. This seems to be going well. Since the shop re-opened Dylan has been more settled and has seemed generally happier.  As well as enjoying the rhythm and structure of working in the shop, it helps that Dylan knows the new coordinator; ‘J’ worked at the National Autistic Society school which Dylan attended so she is a familiar face. Not only does this mean that trust is already established, the continuity in terms of J’s knowledge of Dylan’s interests and skills is fantastic.

The arrival of J has provided an ideal opportunity to review Dylan’s work and to introduce new activities.  Since the social enterprise activity resumed Dylan has participated in a range of arts and crafts activities including candle making, paper printing and model making. He has also made ‘book hedgehogs’; these are ingenious creations, made by cutting the pages of a book. I am told that Dylan worked carefully and methodically at the hedgehogs; this is not something I would have expected Dylan to enjoy and reminds me (again) of the importance of keeping an open mind. As well as introducing Dylan to new activities, J is planning to continue the woodwork which Dylan enjoys so much.  She has identified some fantastic potential projects for Dylan and a new woodwork bench is due to be delivered.  Some new, and more accessible, qualifications are also planned.  Exciting times ahead for Dylan and the other residents  🙂

In my December post I drew a distinction between ‘consistency’ and ‘constancy’, suggesting Dylan might need the latter more than the former.  At the moment, serendipitously, Dylan seems to have both; the new coordinator provides Dylan with some consistency while the work offers him constancy.

Heigh-Ho, Heigh-Ho…

I’ve written about the social enterprise activity linked to Dylan’s care setting in previous blog posts.  This is a craft and horticulture enterprise with a small retail outlet through which the produce and makings are sold to members of the public. The residents at the home are fully involved in the enterprise and work in the shop, supported by members of staff and the social enterprise coordinator.

When Dylan first moved to the residential setting I didn’t pay much attention to this aspect of the provision. While I supported the principle behind the initiative it wasn’t something I thought Dylan would access; he had never shown any interest in gardening, small animal care or crafts, as a child or adult, so it’s fair to say that I viewed the social enterprise activity on Dylan’s timetable with scepticism.

How wrong I would turn out to be. Dylan’s regular afternoon sessions in the shop proved a great hit with Dylan and the source of some of his most significant learning. Since Dylan moved to the residential setting, just over two years ago, he has taken part in a range of activities including woodwork, jam-making, gardening and the production of arts and crafts. Dylan has also worked in the shop, serving customers.

One of the factors which seemed to be key to Dylan’s engagement with the social enterprise activity was the coordinator (I’ll call him A) with whom Dylan developed an excellent relationship.  Dylan seemed to realise that A had a different role to the other staff at the home and this allowed Dylan to adopt a different approach to the relationship. The difference is subtle but significant; because the coordinator is not involved in personal care, an alternative form of trust and closeness was able to develop.

There have been many highlights to the social enterprise activity which Dylan has taken part in since he moved to residential care but the one I would pick out, first and foremost, is his woodwork.  One day, apparently, A  noticed Dylan gazing over the fence which separates the home from a neighbour’s property. Dylan was transfixed by the neighbour’s  shed where a range of woodworking tools were kept. When this happened on several occasions, A decided to take Dylan to a local lumberyard in order to choose some wood and begin a simple project using some basic woodworking tools.

The results were quite extraordinary. Dylan demonstrated a love of working in wood and some good skills. In time, he was producing goods for sale in the shop.  Dylan, apparently, had several orders from members of the community for these wooden planters, which I was informed by A represented ‘90% Dylan’s own work’  (including the painting, which Dylan also enjoys).

Another highlight of last year’s enterprise activity was when residents at the home entered some of their produce in the local agricultural show. Dylan took 3rd prize for his strawberry jam and another resident was awarded first prize for a pot of apricot and passion fruit. These entries were judged alongside produce from across the region so it was an amazing achievement – and as A pointed out to me, ‘strawberry jam’ is a popular category so Dylan did really well.  The icing on the cake (or the ‘toast under the jam’) is that all of this activity has been recorded in support of a folder of work towards an ASDAN qualification.

When Dylan moved to residential care I was told that health stream funding would mean an end to formal education for Dylan.  It is through Dylan’s residential place, however, that he has accessed the only educational provision he has received since leaving school at 19. The ASDAN framework for these activities is, of course, a plus; what is important is that Dylan has enjoyed the activities and engaged in some valuable learning. As the basis for personal development, the social enterprise activity has been fantastic.

One of the unexpected bonuses of Dylan’s relationship with A has been ‘brum brum’ time. Dylan has a deep interest in vehicles. He loves to watch me drive and often ‘asks’ me about the controls, particularly the gear stick, which fascinates him. Staff noticed that Dylan would often stand watching as A cut the grass with the ride-on mower.  ‘Brum brum’, Dylan said one day. After discussion, it was decided that Dylan would be allowed to ride with A (without grass-cutting blades) in order to get a close-up experience of driving.  For Dylan this was joy indeed!

You might have detected my use of past tense and references to ‘last year’ rather than present time. The reason is that since the end of the summer, following A’s departure for a new job, the programme of social enterprise activities has been on hold. I was surprised and (selfishly) disappointed by the news of A’s resignation, but not exactly shocked; the departure of Dylan’s much-loved key worker earlier in the year had alerted me to the fact that staff move on and that Dylan’s life in residential care will be a series of Hellos and Goodbyes.

Christmas makings, 2015

This is difficult as Dylan forms strong bonds and attachments. Dylan has struggled in the past with the sudden  absence of loved people; the death of his grandmother and his sister leaving home are significant examples but there have also been school and care staff who Dylan has missed enormously when they have moved on. For this reason, I was anxious about how Dylan would react to A leaving; not only would there be an interruption in the scheduling of activities which Dylan has come to enjoy, he would surely miss having A in his life more generally?

Dylan’s wreath, 2016

In the event I didn’t see any obvious reaction from Dylan in the weeks following  A’s departure; Dylan was unsettled some days, but not in a way which could be specifically linked. I was mildly surprised. Perhaps Dylan hadn’t enjoyed the social enterprise activity as much as I imagined? Maybe he thought A was on holiday and would return? Or could Dylan be more flexible than I thought?  I was a little disappointed as well as relieved; while I was glad Dylan didn’t seem distressed, part of me had wanted it to be important enough to Dylan to miss and mourn.

Dylan’s wreath, 2017

Then, in the last two or three weeks, a development. One of the support staff has been opening up the shop one afternoon a week in order to keep things ticking over until a new coordinator is appointed. Dylan pointed at the shop one day, insisting ‘Chri’. It took me a while to realise that Dylan was saying ‘Christmas’. Social enterprise time has been used to make wreaths and hampers to sell in the shop, in previous years, and although Dylan has only lived at the home for a relatively short time this must have become an important way marker for him. While Dylan had coped with the interruption of his regular social enterprise activity, he was not going to accept the absence of Christmas activity. So last week Dylan made a wreath for our door and put together a hamper for his Granddad…

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

The closing date for applications for the coordinator role has now passed and I am fingers and toes crossed that Dylan can get back to his woodworking and ASDAN qualifications  soon 🙂

The Next Step

Another Place July 2016 002This summer I’ve been taking Dylan on overnight trips to different locations instead of for a week’s holiday to one place.  Dylan loves staying in hotels and he responds well to variety so our summer trips have proved very successful so far. It also means that I am supporting Dylan for just 24 hours at a time which is sensible given that he is usually on 2:1 support ratios in the community. I love the time I spend with Dylan but it is demanding physically and mentally.

The overnight breaks have allowed me to take Dylan to places which are a little too far to travel to in a day but which we haven’t managed to visit from our previous holiday destinations. Recently we have enjoyed visits to Whipsnade Zoo and to see Anthony Gormley’s Another Place installation at Crosby Beach.  My aim is to sprinkle these trips across the summer so that Dylan and I are able to enjoy the equivalent of a week away together.

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Another Place July 2016 031Taking a holiday myself is something that has been on my ‘bucket list’ since Dylan moved to residential care.  Although I have had occasional weekends away over the years I’ve never been able to consider more than this. Once free of caring responsibilities, however, I still didn’t find it easy to contemplate. For the first half year I was focused on settling Dylan into his new home; as this involved regular visits there wasn’t the space for a break.  Since then I’ve managed to find all sorts of reasons not to go away: work; decorating; poems; money.  The usual excuses.

But sorting through drawers one day I found a voucher for ferry travel to France.  A few years ago, when Dylan was very anxious and his ‘challenging behaviour’ at its height, I decided to cancel a holiday. Although I had travelled alone to France with Dylan before, it didn’t seem wise that summer. The holiday company with whom I had booked the gîte weren’t sympathetic but Brittany Ferries didn’t hesitate to issue me with a voucher for replacement travel. I had filed it away, assuming it would be used when Dylan was settled enough to travel at some point in the future. Suddenly, it seemed, the future had arrived: the voucher was due to expire August 20th this year.

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Another Place July 2016 036Since Dylan has moved to residential care I’ve realised, and come to accept, that he needs more support than I can give. Dylan benefits from 2:1 support in the community and responds positively to a ‘fresh face’ at times of anxiety; having access to more than one adult, so that a support worker can be strategically swapped, is good for Dylan and a more positive experience for his carer(s). These are things which aren’t possible  when supporting Dylan alone. This is partly why I’m limiting the time I am in sole charge of him this summer and explains why, with some sadness, I have decided that it’s not possible for me to take Dylan to France by myself again.

But what to do about the voucher? Without it I would probably have hummed my way through the summer, fiddling with paint and trying to write a poem. It pained me, however, to sacrifice those ferry crossings. So oh joy and delight when a girlfriend declared she would be happy to put up with accompany me to Brittany for a week. Fantastic. We agreed easily on a location and gîte. Figuring out the crossings and bicycle rack was a bit trickier but we worked it out. What I was especially looking forward to, I told my friend, was reading on the ferry.  During Channel crossings with my children I had watched others doing this and hankered after such space. Instead of having to hire a cabin for meltdowns and timeouts, and be on high alert, this time I could relax with a book.

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Another Place July 2016 043Planning the holiday wasn’t all plain sailing, however. In fact I had a whole bag of worries about it which I discussed at length with the manager of Dylan’s residential home.  How would Dylan manage the longer than usual gap between my visits? What would we tell him and how? If there was an emergency, how would I be contacted? What if I couldn’t be contacted? These might be quotidian worries but they are not insignificant in the context of autism where happiness depends so much on reassuring routines.

Facing these anxieties and challenges seemed to be a necessary next step in the transition process, however.  The parents of other residents, I was told, had experienced similar anxieties the first time they had left their son or daughter in order to take a holiday by themselves. The staff would keep Dylan busy while I was away, I was assured, and make sure that his favourite activities were scheduled.  Confident that I had considered the situation from all angles, I booked the trip.

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Another Place July 2016 040What I hadn’t factored in, however, was Daesh.  As the attacks in Europe increased in frequency and scope, the possibility of being caught in a random act of violence ratcheted up my anxiety. Rather than worrying about how Dylan would cope with my temporary absence, I started to consider the implications of my not coming back at all. The scenario was awful but not unthinkable. We are more likely to be victims of a traffic accident, my friend pointed out, especially on the wrong side of the road. She was right. Why then was Daesh increasing my anxiety about being away from Dylan?

Having a dependent child or adult to care for makes us feel vulnerable. In such a situation there can be a tendency to become risk-averse, as I explore in this post. But what are the implications for autistic children and adults at times of conflict? I reflected on some possibilities in this post and in this book review.  When I wrote those posts, not so very long ago, the war in Syria felt like news from another country. Now, suddenly, it involves us all.

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Another Place July 2016 039I thought I’d let you know, I told Dylan’s care home manager, that I’m having second thoughts about my trip to France. I probably would go, I told her, but I was trying to think through the implications of the recent attacks.  I needed to be comfortable with my decision, I explained, or else I wouldn’t be able to relax. Earlier that day I’d watched a public information video about what to do in the event of  a ‘terrorist attack’. The advice came down to this: Run, Hide, Tell.  I watched the video through trying to imagine how I’d follow the guidance if I were with Dylan. It made no reference to people with disabilities or the vulnerable. It seemed to assume we are all fit, agile, able-bodied and verbal.

It would be impossible to keep Dylan safe in such a situation. He wouldn’t follow an instruction to run. He doesn’t understand the concept ‘hide’. He would behave erratically and probably noisily, drawing attention to himself and others. One of the pieces of advice in the video is to always show yourself to be empty-handed, particularly at point of rescue. This is important, apparently, because police might otherwise assume you are holding a weapon and mistake you for a terrorist. There is no way that I could persuade Dylan to show you his hands; in the community he hangs tight onto the arm of whoever is supporting him, burying his hands deep under their arms. If police are casting around for someone likely to be concealing a weapon, Dylan may well arouse their suspicion.

So I asked the care home manager what training staff had received for managing a ‘critical incident’ while supporting a resident in the community. Was this covered as part of  staff training? And given the current level of anxiety among the general public, were staff aware that the erratic behaviour of a resident might cause alarm and suspicion in the community? The manager assured me that staff had received training for explaining autistic behaviour to the general public but couldn’t, of course, allay my fears about a terrorist incident. I think we just have to get on with our lives, she said.

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Another Place July 2016 004I’d been letting three things get in the way of me and Dylan living our lives: my anxieties about his ability to survive an incident; my concerns about my own safety given his dependence on me; and my worries about not being there for him.

But my response to these anxieties, I realised, had been what my daughter would call ‘cotton wool’.  Would you put that cotton wool back in your pocket? she asked me one day as I told her to take care on some play equipment. I suspect I’ve never quite taken the cotton wool from Dylan but I have, at least, learned to let go of it a bit since he moved to residential care.  But wrapping myself in cotton wool instead? I can only imagine what my daughter would say to that.

Happily, the friend I will be holidaying with understands these anxieties and has listened while I talk them through. Something I’ve found useful is identifying a practical response to an anxiety: things that we will and will not do while we are away, for example, and how we would travel home in an emergency. Such concrete plans feel  better than the softest of cotton wool – even if, in truth, they probably wouldn’t be much use. I suppose that’s also the point of Run, Hide, Tell

 

wishing you a safe and happy summer…

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The photos of Anthony Gormley’s Another Place (on Crosby Beach) were taken by Liz, July 2016.

The Familiar And The Strange

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Arriving

It’s not surprising that Dylan likes Premier Inns: the rooms are identical, the facilities standardised and the buildings similar in style. Such predictability  can be enabling; I’m not sure Dylan would be as relaxed as he is away from home without the reassuring familiarity of a ‘moon hotel’. When we arrived at a  Premier Inn last weekend, however, I was shocked; the twin room wasn’t configured in the same way as those we had stayed in previously and the narrow space between the beds made them feel more like a double.

In the context of a mother and adult son the room wasn’t acceptable. Dealing with the situation, however, was potentially tricky; Dylan was already looking around, working out where to put his things. If I were to do something about the situation I had to act quickly. I managed to persuade Dylan to leave bags unpacked while we returned to reception. It was a holiday weekend and as I had struggled to find accommodation for the evening I wasn’t confident about my chances but, keeping my voice cheery so as not to make Dylan anxious, I explained the problem with the room.

Once again I was struck by how improved autism awareness is; the staff instantly understood the situation and dealt with it beautifully, identifying  potential solutions and involving Dylan in the process.  Would Dylan like to view an alternative room, one of the receptionists asked? We followed her up the stairs where we were delighted to find a larger room with a bed by the window for Dylan. I am sure that involving Dylan in this way helped him to understand the situation; had I simply negotiated the room change at the desk  then returned to the original room to retrieve our bags he would probably have thought we were leaving and become anxious.  With the visual support of visiting the alternative room, however, Dylan accepted the change without a problem.

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Departing

This turned out not to be the only disruption to routine Dylan had to cope with; returning to our room after a meal out  I discovered I couldn’t get Brave to play on his ipad mini. As I mentioned in my last post, the ipad mini is a new acquisition. I haven’t used it for Facetime with Dylan yet as I am still trying to get myself up and running with Dylan’s old ipad.  I thought, however, that I’d managed to transfer Dylan’s music and films across to the mini and that all was well. ‘You can watch a film on your new ipad when we get back to the moon hotel’ I had said to Dylan as we left the restaurant.

Fortunately I managed to distract Dylan with a bath when Brave wouldn’t play as promised. The next morning I managed to head off a repeat request with the suggestion of breakfast.  I had figured out that the films Dylan used to have on his old ipad were ‘in the cloud’ on his new mini; rather than available to him at all times these are now dependent on Dylan having an Internet connection capable of downloading them (which the hotel’s free Wi-Fi service was not). This is not ideal and will be very confusing for Dylan who was previously able to watch whenever he wanted. For his technophobe mother, meanwhile, it’s another argument against life’s unremitting upgrades.

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York Minster

Last weekend’s ‘moon hotel’ was in Chester, a place neither Dylan or I had visited before (except for trips to Chester Zoo which hadn’t involved driving into the town centre).  When introducing Dylan to new  experiences it is useful to make a connection with things which are already familiar. This is true of all learning, of course, but seems to be particularly the case for Dylan who embraces new experiences happily, with confidence, when they are grounded in something he already knows. So my reason for taking Dylan to Chester was the town’s similarity to York, Dylan’s favourite place in the world.

As I have noted before,  Dylan has been visiting York for years; he recognises and collects information about York, says the word ‘York’ beautifully, and spends much of his time looking at pictures of York.  Part of this attraction is the Minster but recently I’ve realised that of even more interest to Dylan are York’s city walls. We have developed a hand sign for city walls which involves drawing a horizontal circle in the air; ‘York’ Dylan says to me optimistically, tracing a flat ring with his finger. Surely, I told myself as we drove into Chester last Saturday morning, Dylan would love it; there was a cathedral, a railway, a river and city walls, just like at York.

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Chester Cathedral

Serendipitously we found a mobility car park (hats off to Chester Council) at the entrance to the Cathedral and city walls. Dylan was on alert; he had the quick look about him that means something has caught his attention.  As I switched the car engine off I turned to him and drew a circle in the air; ‘there are city walls here’ I said. I didn’t need to tell Dylan; he had already clocked them.  As we emerged from the car park into a stained glass dazzle of light I wondered if Dylan might head into the Cathedral first? But no:  off he tore, anti-clockwise, around the walls.

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City Walls, Chester

Perhaps Dylan likes city walls because the way they encircle an area is intuitive to him and feels comforting.  When Dylan was very young – before we realised he was autistic – one of the things he did was stake out perimeters. It’s quite a common behaviour among autistic children: lining objects up around edges, creating boundaries. Before I knew it wasn’t playing I used to smile at Dylan’s imaginatively-placed bricks and cars and tea set pieces. The first time I remember puzzling at it was on holiday in France when Dylan was 16 months old.  As we only had a few toys with us Dylan emptied the kitchen cupboards of pots and used those instead.  I have a memory of watching him scratch his head like an old man as he surveyed a border he’d built around a room with cups and plates and saucers. There was something about it that didn’t seem right.

Looking back I can see that being taken into a new environment with differently-configured space must have been very confusing for Dylan. With no knowledge of his autism, I wasn’t looking out for Dylan or mediating the world for him as I do today. For the undiagnosed child, the world must seem a very scary place indeed. Now I can smile because I understand that  Dylan’s attempt to impose order on the holiday cottage was smart; he found the pots, on his wobbly toddler legs, and did his best.

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River Dee, just outside the Walls

Later, I would watch Dylan mark territory with his body: pacing the edges of a library or art gallery; establishing a boundary in a park or field; setting himself limits when visiting friends. ‘It’s alright’ I would say, ‘once Dylan fixes his boundary he’ll keep within it’. It is a way of mapping but also a safety mechanism; when Dylan has paced a border, or marked a route, he seems to feel less anxious about inhabiting the space. I think this is partly about his location in relation to others but is also about his embodied self; he needs to know where he is in relation to himself as much as to the outside world.

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Dylan with his book

As well as visiting Chester Cathedral we visited St John the Baptist’s Church, Chester’s  original Cathedral.  There was a second hand book sale in the church and Dylan went rummaging, returning with a Thomas the Tank Engine book (no surprise) and a coffee table book (which was unusual). ‘What is that you’ve got, Dylan?’ I asked, pointing to the large book under his arm as I helped him find his purse.  ‘York’ he replied.  The book was called ‘Colourful Britain’ and had photographs of various iconic locations in Britain. The reason Dylan wanted the book was the photo of York Minster on the cover.

Was Dylan making an explicit link between the town we were visiting and his beloved York? Could his experience of somewhere strange be helping him re-think the familiar? As I wondered this I recalled how, at Dylan’s age, I had spent a year in the USA as part of an exchange programme. As Christmas approached one of my English peers felt so homesick she decided she would go home for Intercession. I hadn’t settled either but I didn’t want to spend money on a round trip flight to England; I decided to go travelling in Mexico instead.

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Magnolia, Chester Cathedral Garden

Those weeks turned out to be some of the most difficult of my life; I got into scrapes I shiver to recall 35 years on. But one of the positive things that came out of the experience was that when I made it back to the University of Massachusetts it felt different. I remember how relieved I was to see the vast campus (which before Christmas had seemed so alien) and hear the American accents telling me they would see me later (which had seemed unintelligible before but was now reassuringly familiar).  It was wonderful to be back, I told my friend Nettie: it was as if I’d come home. 

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Water of Life (Garth, 1992)

Before we set off to drive back over the Pennines on Saturday evening I showed Dylan his programme for the next day and week ahead. The plan was that I would return Dylan to his residential setting  but I wasn’t sure whether Dylan would accept this; usually I see him Saturday/Sunday at home rather than Friday/Saturday away from home.  I pointed at the symbols and photographs and tried to explain, reassuring Dylan that he would see me as usual the following weekend.  I fell silent, wondering if he had understood. Dylan looked  at his programme and pointed to the photo of our house:  ‘Home’, he said to me.

This is the first time Dylan has said ‘home’ unprompted. I have never been sure whether or not he understands the word or knows where home is – and since Dylan moved to residential care I have become even more confused about this. Should I call his care home ‘home’, I have asked myself,  or the house where we used to live together and which he now only visits?  I have kept fudging this, never quite sure what to say. But Dylan seems to have it figured out. Perhaps moving to residential care has given Dylan a stronger sense of home in the same way that I came to appreciate the familiar through the strange at his age?

‘Yes Dylan’, I replied: ‘That is our home’.

Learning Through Dialogue: reflections on blogging (ii)

Photo075This is the second of a two-part post reflecting on some of the things I have learned through Living with Autism. In part one I suggested that the blog has been invaluable in providing me with a space to reflect on key issues in relation to Dylan’s care; it has encouraged me to think more deeply about a range of topics and to pay closer attention to Dylan than I might otherwise have done.

For one post, for example, I kept a log of Dylan’s vocalisations in order to illustrate his engagement with speech and language, something I doubt would have occurred to me without the blog. I learned a lot from this activity, and from other observations made to inform blog posts, and Dylan and I have benefitted  from this process. I also noted, in my last post, that the blog has been helpful in the sense that writing can be transformative; while drafting posts I found new ways of thinking about familiar issues and emerged from the process of writing having learned something about myself and Dylan.

This growth and development does not take place in the writing alone however; it is through dialogue with others that some of the most significant and creative learning ocurred. One post, for example, reports what happened when I tried an approach with Dylan suggested in a comment on my blog. I have previously noted (in a post about autism and divorce) that what single parents of autistic children lack is space and dialogue; these two resources, I suggested, are invaluable if carers are to feel nourished and supported. As well as providing me with a sense of space, Living with Autism has been crucial in providing such dialogue. I am immensely grateful for the ideas, musings, suggestions, examples and encouragement received from others, and for the friendship and support Dylan and I have found here. The rest of this post celebrates the reader’s role by sharing what I have learned from (and about) an audience.

Being careful: reflecting through Chimamanda

untitledI’ve just finished reading Chimamanda Ngozi Adichie’s superb novel Americanah (Fourth Estate, 2014). The main character, Ifemelu, is a blogger; when she moves to the US from Nigeria she sets up a WordPress site called Raceteenth or Curious Observations by a Non-American Black on the Subject of Blackness in America (she later changes the tag line to Various Observations About American Blacks (Those Formerly Known as Negroes) by a Non-American Black). Later, returning to live in Nigeria, she sets up a new blog, The Small Redemptions of Lagos.

Ifemelu’s reflections on blogging punctuate Adichie’s novel and extracts from it are used both to carry the plot and to illustrate key themes. As well as being an inspired narrative device the material makes fascinating reading for anyone who blogs (especially chapter 33 which is devoted to the subject). We hear, for example, that Ifemelu checked her blog ‘like a child eagerly tearing open a present she is not sure she wants’ and that she received mail from people ‘asking for a drink, telling her she was a racist, and giving her ideas to blog about. ‘ (p. 303) When Ifemelu’s blog starts to generate interest among educators and business leaders and she is invited to speak at diversity workshops, to take phone calls she: ‘wore her most serious pair of trousers, her most muted shade of lipstick, and she spoke sitting upright at her desk, legs crossed, her voice measured and sure’. (p. 304)

Yet, we are told, ‘a part of her always stiffened with apprehension’. Initially this is because Ifemelu fears she will be exposed as a fraud – that she is no expert on ‘race’ and has no particular credentials to speak publically on the topic. She prepares carefully for her first engagement and feels deflated when her talk receives a lukewarm reception. That evening she received an email:

YOUR TALK WAS BALONEY. YOU ARE A RACIST. YOU SHOULD BE GRATEFUL WE LET YOU INTO THIS COUNTRY. (p.305)

untitledThe email is a revelation to Ifemelu who subsequently realises that the people who extend invitations to her to speak at events want to ‘feel good about themselves’ rather than to be inspired to enact change: ‘They did not want the content of her ideas; they merely wanted the gesture of her presence’. These people, Ifemelu came to understand, were not the same people as those who read her blog. These different audiences were open to different conversations. So, for example, Ifemelu tells her all-white audience at a diversity talk ‘America has made great progress for which we should be very proud’ whereas on her blog she writes: Racism should never have happened and so you don’t get a cookie for reducing it. (p. 305).

Ifemelu’s blog becomes so successful that in time she is able to hire an assistant to delete inappropriate comments on her blog ‘almost as soon as they were posted’. Living with Autism clearly does not occupy the same space as the fictitious Observations by a Non-American Black. While Ifemelu’s blog attracts thousands of readers and comments, this one is much more modest of aim and scope. I’m interested, however, in Adichie’s observations about blogging and particularly in the possibility that a blog audience may be more open to radical thinking than a non-virtual audience.

At the end of my last post I referred to an observation, by one of my colleagues, that the tone of my posts was ‘careful’. I suspect this was partly from my concern to write clearly but mostly because I was anxious. ‘Autism’ is a slippery subject. Nothing about it is generalisable. Everything can be qualified. The concept is contested. The language is different (and differently contested) in different countries and contexts. The ethical issues are complex, particularly when they involve individuals with learning disability and without speech. There are competing philosophical models and oppositional positions on policy and provision. The concerns of autistic people, professionals and parents are different. And (as with everything) there are agendas, trends, fads, heroes and villains. Like ‘race’ it is a topic which challenges and which demands our emotional as well as intellectual engagement.

When I started blogging I realised (from reading other blogs) that there is as much conflict as harmony in the online community and I trod carefully. As well as wanting to respect divergent views, and to embrace professional and personal perspectives, it was important to me that Living with Autism created a space which was accessible to people without a connection to autism. Juggling these different constituencies is perhaps one explanation for the caution in my voice.

untitledIn Adichie’s novel Ifemelu occupies an increasingly courageous space as she becomes more comfortable with her role as a ‘provocative race blogger’. While Living with Autism may not have courted this, I’d like to think that at least some of my posts challenge established ideas. Certainly, as time went on, I felt braver about discussing sensitive topics; recently, for example, I published a post on carer suicide/killing, a subject which has provoked fierce debate and which I would once have been too anxious to tackle. In the event I need not have feared; the ‘careful’ voice that my colleague identified has been equally true of the dialogue on Living with Autism. I’m pleased that the comments on this site, while not always in agreement, have been respectful and non-inflammatory; for this, Dear Reader, I thank you.

Namastē and Olá

wikiindiaBecause Living with Autism has not been as ambitious in scope I have not had to deal with the fear triggered in Ifemelu by the readers of Observations by a Non-American Black:

The blog had unveiled itself and shed its milk teeth; by turns, it surprised her, pleased her, left her behind. Its readers increased, by the thousands from all over the world, so quickly that she resisted checking the stats, reluctant to know how many new people had clicked to read her that day, because it frightened her. (p. 303)

wiki brazilAs I find statistics fascinating I am not capable of exercising Ifemelu’s restraint. Besides, the WordPress data is rich: it is not only possible to identify the popularity of posts and track waves of interest, visitors to a blog can be mapped by location. Living with Autism might have been viewed only five times in Ifemelu’s native Nigeria but I am surprised that it has been viewed at all in some of the 122 countries listed in my blog stats. I love the roll call of Myanmar and Mongolia (1 each), Curaçao and Nepal (2 each), Kazakhstan (3), Costa Rica (4), Georgia (5) and Mauritius (6).

It isn’t particularly surprising that the majority of readers come from five English-speaking nations (UK, US, Canada, Australia and Ireland) but I could not have predicted the position of some countries on the leader board: India, for example, is in 6th position with 287 views and Brazil is not far behind in 7th  (220). I realise these viewings could be from multiple readers or from a few loyal followers; whoever you are, Namastē and Olá.

Making sense

wikiusThere are other, more complex, statistical analyses which can be done and, indeed, once a year WordPress sends a ‘review’ to bloggers, offering headline statements about their blog’s performance. At the end of my first year of blogging, two things caught my eye. Firstly, the majority of readers of Living with Autism were located in the United States. I saw annual reviews of other UK bloggers (on different topics) and noted with interest that their readers were overwhelmingly British. This could be linked to focus; certainly there seems to be more interest in autism in the US than in the UK (these statistics have recently changed and I now have slightly more British than American readers).

wikiukThe other headline finding from the WordPress review of my blog was that my posts had ‘staying power’. I should ‘consider revisiting some of the topics I’d already written about’, the review advised, as my historic posts continued to receive relatively high numbers of readers. This advice didn’t seem very meaningful as all my posts are on the same broad topic: Dylan and my attempt to understand how best to care for him. It occurred to me recently, however, that what the statistics might do is indicate specific areas of concern within the autism community.

While all blogs have some loyal followers, many readers arrive at a site via an internet search on a topic of interest to them. These searches must sometimes be very disappointing; when I wrote a post called He’s Not My Toy Boy, for example, Living with Autism received a number of hits from people who were probably hoping to find one. Some of my posts, however, are found by people who seem to be searching for exactly the topic I have written about.

Reader Concerns

tears5A post I wrote about Dylan not producing ‘real tears’ (Why Doesn’t My Autistic Son Cry Tears?), for example, receives unwavering attention. Every week it is at or near the top of the week’s viewings and it stands third in the overall rankings. What is distinctive about this post, and what intrigues me about it, is the way it has made quiet progress up the statistics page, overtaking even those posts which received a flurry of attention in the aftermath of being selected by the WordPress editors to be freshly pressed.

The post is actually one of my least favourite pieces of writing; it is short and inchoate, offering an observation but ultimately (I think) unsatisfactory. It is my third most popular post only because people keep finding it when they type ‘why doesn’t my autistic child cry’? (or something similar) into Google. If I were an autism researcher I would definitely be asking questions: if you have such a background, please note that significant numbers of parents claim their autistic children do not cry! Other common interests and concerns (if numbers of viewings can be considered an indicator) include the difficulties of chronological age in relation to autism (my most popular post by a long way); understanding autism through poetry (My Trees Have Grown Hair and The Frog Prince); and the gender implications of autism.

wildlife-imaging.co.ukTwo of these posts were Fresh Pressed so it is not surprising that they are among my most-viewed posts. What I do find surprising, however, is that (with the exception of my post about crying) my top five posts are among the most demanding of those I have written: they are long; some draw heavily on (and include) poetry; and they engage with sociological or philosophical ideas. The fact that these are my most popular posts reminds me to trust the reader; visitors to this blog have clearly been prepared to read longer posts, to engage with difficult ideas and to read poetry. These data also remind me of Ifemelu’s reflection that the readers of her blog were more prepared to be challenged than were the audience at her workshops; I will not assume in future, that virtual dialogue must by its nature (or format) be less challenging.

My Preferences

The readers’ favourite posts are not the same as my own preferences. The posts which I have most enjoyed writing, or which I feel most satisfied by, tend to be those which have made me think very hard (this one, for example, which tries to apply a scientific paper to Dylan’s life history); which I have needed to be courageous to write (such as this one about alcohol and autism); or which have been demanding in terms of format (usually because I incorporated poetry or fiction as in this one about the sea and this one about air travel). I have also enjoyed reviewing films and books  – though, again, my favourites are not the same as the readers’.

caul 002As well as identifying autism and ‘crying’ as a likely subject for further exploration, I have suggested other potential research ideas in some of my blog posts. In this post, for example, I hypothesise that Dylan’s use of the camera suggests lip gaze may be a more appropriate focus than eye gaze when considering the communication of ‘non-verbal’ children and adults, while in this post I suggest that the letters of the alphabet may be ‘read’ by visual learners as objects rather than as symbols. I have also tried to promote lines of enquiry into the role of the senses in memory and the role of art in the education. These, however, have not generated any particular interest 🙂

As well as not being beguiled by potential research questions or hypotheses, the data suggest that readers are less interested in ‘diary pieces’ (recording small incidents in my week) and posts which focus on my life rather than on Dylan’s or on religion/spirituality. These least-viewed posts often (though not always) have ‘less to say’ (i.e. they lack a revelation or transforming moment); like Ifemelu’s readers, visitors to this blog seem to have appreciated discussion of the ‘big ideas’. It seems to be the pieces with a tentative and more meditative voice – often those which incorporate poetic texts – that have been particularly popular with readers. While this doesn’t mean readers demand to be ‘uplifted’ or can’t ‘do dark’, there is an appreciation, I think, of the beauty and the celebration – what I think of as the ‘poetry of autism’.

Not learning from statistics

IMG_0029 (2)My purpose in setting up this blog was to share my experience of attempting to secure appropriate provision for Dylan after he left school. When he finally took up a residential place this summer, that journey came to an end and a new one began. As I noted in a previous post, the initial weeks of Dylan’s placement have felt like a ‘phoney transition’ in that I have been able to see him during the week as well as at weekends. Furthermore, as the majority of Dylan’s things are still with me, rather than at his new home, the full implications of the move have not yet sunk in for either of us.

In a few days time, however, it will be two months since Dylan’s placement began. I have returned to work after the summer break and a new academic year is about to start; I won’t be able to continue the transition activities which I have been able to prioritise during the first eight weeks of Dylan’s placement. The phoney time is over and real time is about to begin.

Rather than close this blog down immediately, I plan to keep a daily diary recording the first 100 days of living without autism. I imagine the pieces will be short and ephemeral and if they contain any ‘big ideas’ at all they will be stumbled upon. I noted earlier that the ‘diary type’ pieces on Living with Autism have been among my least-viewed posts which suggests that the next phase of this blog is unlikely to be popular 🙂 You could be forgiven for asking if I had learned anything at all from the WordPress statistics? Well, yes – but reader numbers have always been a bonus rather than an aspiration and I imagine this will be even more the case in future.

My aim in recording the first 100 days is to observe the impact of separation on me and on my relationship with Dylan. I hope that this will be as helpful to us in learning to live without each other as it was in helping us to live our lives together. Whether you are staying or leaving, thank you for accompanying us this far.

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Reference:
Adichie, C.A. (2014) Americanah. Fourth Estate

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.

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.

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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.

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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.