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.

Small Steps Back, Big Leaps Forward

Picture1When I looked back in my diary last weekend I discovered it was exactly a year since Dylan went for his first night’s respite at the house where he now lives. Although he had spent occasional nights there during his time at a nearby National Autistic Society school, Dylan hadn’t had any contact with the setting since his transition to adult services. An escalation in ‘challenging behaviour’ after Dylan left school meant I had been unable to find a respite provider willing to accommodate him.  As Dylan had not therefore spent any time away from home for months,  it was with a mix of relief and trepidation that I dropped him off for an overnight stay a year ago.

I had spent over a year trying to identify a specialist provider able to support Dylan and after months of frustration and disappointment it seemed I had finally found the perfect place.  This felt like the last chance saloon though.  What if something went wrong and the key to the golden gate was withdrawn?  Reading last year’s diary entry reminded me of just how anxious I had been. I seem to have had two main concerns: whether staff would be able to keep themselves as well as Dylan safe if there was an incident and the potential  impact of the trial on Dylan’s proposed residential place.

If it is challenging and they see the full extent of D’s behaviours there could be a high risk situation… someone could get hurt and they could say  – I’m so sorry but we can’t possibly accommodate Dylan after all – we didn’t realise the extent of the CB.  So I need him to be good (but not too good). Well: breathe now, breathe. Try to relax. This is what I’ve been desperate for and needing. I have until tomorrow. Only tomorrow!!

Needless to say, that first overnight stay, and subsequent visits, went fine. There were some incidents but nothing the staff couldn’t handle or to cause concern. Dylan was just the sort of young man, the manager told me, their provision was aimed at. So he was  offered a place at the house and, as I commented to staff when I collected him last Saturday, his progress has been remarkable.  Dylan has settled well; he has developed some great relationships and seems to thoroughly enjoy his programme of activities. Although there are still incidents from time to time, Dylan’s anxiety levels are significantly reduced thanks to the specialist support he receives.

Dylan is doing so well in fact that he went away with staff on holiday at the beginning of this week. ‘I can hardly believe’, I said as I handed over Dylan’s trundle case at the weekend, ‘that it is only a year since Dylan’s first sleepover’.  If someone had told me, then, that just 12 months later Dylan would be doing this I would perhaps have breathed more easily. As Dylan hasn’t been on holiday without me before this is a significant step for him. It represents a pretty big leap for me too though. At the weekend I realised I had left Dylan’s suitcase for staff to pack without feeling the need to also provide a list of instructions and details of what Dylan should pack. This  didn’t so much as cross my mind:  I trust the staff to care for Dylan and accept I am no longer the only one who knows what he needs.

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89a02f168afcaab595550196bc3871bbThe Log Cabin on the coast which Dylan’s care provider have rented is being shared across the week by the residents at the home. The young people take turns to have a couple of days away, one by themselves and one shared with another resident; Dylan was first to go on Monday morning and he was joined  the next day by another young man who took Dylan’s place in the cabin on Tuesday night.  Apparently Dylan had a lovely time and thoroughly enjoyed himself.

I say ‘apparently’ because I am, of course, dependent on reports from others. I did glimpse Dylan, briefly, on his return from the short break as ‘Facetime with mum’ was on his programme that evening. Facetime, however, hasn’t been very popular with Dylan recently.  The days of kissing the screen appear to be over.  In the last couple of weeks Dylan has clutched his ears, closed his eyes, moaned softly and walked out of view during our calls.  ‘We might want to step back a bit with Facetime’, I suggested to the activities coordinator: ‘Dylan doesn’t seem very comfortable’.

Parents and professionals will perhaps recognise this pattern of engagement and disengagement; Dylan quite often appears OK with something initially but then decides it’s not for him after all (and vice versa). This delayed reaction is typical for Dylan who, like many autistic children and adults, needs extra processing time for new experiences. Consequently, it can take a while for Dylan’s authentic response to a situation or activity to become clear. I should know this by now; my rejoicing about Facetime was almost certainly premature.

51b5dd798d9adbf39a1b93ded520d811So when I got an email last week asking whether I thought Dylan would like to join an early evening running group, and if so would I mind rearranging our Facetime session, I jumped at the suggestion.  Physical exercise is one of the best ways of involving Dylan in community activities and I loved the idea he could take part in a fun run with staff from the home and members of the public. That would be great, I replied, and no problem at all about the Facetime session.

When staff tried to do a ‘Programme Change’ , however, Dylan wasn’t happy. He pointed repeatedly to the Facetime icon, insisting it be reinstated. I was surprised by this, having convinced myself he wasn’t enjoying the sessions. Maybe in his own way he looked forward to them? Had I been too quick to make assumptions? How could I be sure Dylan’s behaviour meant he didn’t enjoy Facetime? So we decided to leave Dylan’s programme as it was and schedule the running to start this week instead. Come the Facetime session, however, it was a struggle to stay positive; you would never have guessed, from Dylan’s reaction, that he wanted it on his schedule.

c15611269b52da129a0117ce6b4065ddAs Facetime is fundamentally about communication maybe it is no surprise that Dylan should feel anxious. Although it is visual, Facetime still requires direct interaction in that it demands a face and assumes speech.  For Dylan, for whom eye contact and voices provoke anxiety, this is not ideal.  During one session, realising that Dylan was uncomfortable, I fell silent and started making simple actions: putting my tongue out, touching my nose, pulling a funny face. After a while I had Dylan’s attention.  Gradually he started to copy some of my actions. I heard Dylan’s support worker laughing at us (in a nice way). It felt a bit weird but it was probably the most relaxed I’ve seen Dylan on Facetime recently.

So I haven’t wanted to give up on  Facetime too quickly in case it is something we only need to tweak. Maybe we are scheduling it at an irritating time of day when Dylan is wanting to do something else? Or perhaps we need to move it to another area of the home where Dylan is less distracted? Maybe Dylan and I will develop a silent Facetime language. I would be sorry to lose Facetime as I find it more comfortable than the telephone. At the moment, therefore,  I am asking whoever is supporting Dylan to chat to me, rather than try to involve Dylan – perhaps watching from the sidelines will be enabling for Dylan. I’m not sure what will happen next.  Perhaps we’ll knock it on the head for a while. It feels like a step back, but only a small one.  And who knows – the running group could be a big stride forward.

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‘I have to accept that there will be setbacks’, I told myself on Sunday as I sat alone in a cafe over a bowl of soup, wondering what to do with my unexpected free time.  The battery on my phone had inconveniently died so I couldn’t phone a friend to ask if I could visit or we could meet.  I tried to stay positive while I re-thought the rest of my day. Because, for the first time in the year since Dylan had moved to a residential home, which only the previous morning I had been rejoicing, I had telephoned staff to ask if I could return him earlier than scheduled.

9235c2ffd9004f1f6c76b96e9579c75bThere had been an incident and I had decided it probably best to abandon our planned activity.  So I had dropped Dylan off at the home before lunch on Sunday, rather than at the end of the day, and was pondering my next move from a nearby cafe. I’d probably been undone by my own hubris that morning, I reflected. I had been too relaxed.  I had taken my eye off the ball. I had forgotten that with Dylan I must be vigilant and prepared for the unexpected. It was good to be reminded of this, I told myself –  and lucky that it had been in such a safe environment.

I had taken Dylan to an Autism-Friendly screening of Angry Birds at an out of town multi-screen entertainment centre which Dylan has been to numerous times.  Dylan doesn’t need to go to inclusive screenings any more as he is a seasoned cinema goer and understands the routine. I like to support AF initiatives, however, and as the film was at a convenient time and location I had suggested to Dylan that we go before lunch out and an afternoon walk.

I had a relaxed swagger about me as I helped Dylan to use his CEA card to buy his ticket and queue for his salty popcorn and water. I bought a cup of coffee. I was aware of parents of young autistic children doing what I had needed to do with Dylan years ago: encouraging them into line; helping them to wait and to choose appropriately; supporting them through terrors and tears and mini meltdowns; picking up and carrying or patiently waiting. I probably let myself feel glad that my young man was quietly waiting to be served, behaving beautifully.

cd4c980c1b4e1978ed7fc085e53e708aAnd then it kicked off.  The film wasn’t in the cinema Dylan wanted it to be in (up the escalator). He became an Angry Bird. I saw, in the split second before Dylan did it, what was about to happen: backpack off, frog-jump as high as he could manage, popcorn falling everywhere, like snow, and then Dylan squirming in it, on the floor, yelling in anger.  The staff had clearly had autism awareness training and were prepared; they appeared with brushes and pans and a ‘hazard’ sign, asked me whether it had been sweet or salty (for  a replacement) and what they could best do to support me.

I said that Dylan could sweep it up himself – that it was important that he did – and that I wasn’t sure I wanted him to have replacement popcorn.  So, to the staff’s surprise, I got Dylan to help them clear up. Was there another way into the cinema I wondered? Could we go up the escalator and enter through a back door? But there wasn’t. I wasn’t convinced that I was going to get Dylan into the cinema but thought I would try again and agreed he could have more popcorn. When I told Dylan again, however, that the film was on the ground floor, he prepared to repeat the popcorn party trick. At the very  moment he bent his knees to propel himself into the air I slipped the carton out of his fingers. ‘I think we’ll leave’, I said to the member of staff, as  I escorted Dylan from the cinema, shouting and waving his arms, still pointing to the escalator.

Should I have let him go upstairs? Maybe. Perhaps he only wanted to ride it and would have come back downstairs for the film. I doubt it though. I suspect more likely is that he had a particular auditorium  in mind. I decided I couldn’t take the risk of letting Dylan head upstairs to find myself with a more difficult situation to manage on the mezzanine. Leaving the cinema, however, had made me feel sad;  going to a film together is something we have done for years and a shared activity I have loved. I couldn’t guarantee a film would be showing in a particular auditorium for Dylan.  Were our cinema trips in jeopardy? Was this something else to lose?

WP_20160607_005When I dropped Dylan off at his residential home a member of staff told me I had done exactly as they would by encouraging Dylan to sweep up the mess and then changing the activity. And, she suggested, I might not have to give up cinema trips altogether, just avoid the multi-screen  for a while. Still, I sat staring into my soup, feeling disappointed not just about the day but the  loss of future days. How could I possibly take Dylan to the cinema again, I wondered? It hadn’t occurred to me before that a trip to the cinema might be as much about the auditorium and environment as the film itself for Dylan. I searched through all my cinema memories, asking myself how many times we had been upstairs and how many downstairs. Which films had we watched in which auditorium? I knew Dylan usually headed for particular seats. Now I realised that this varied by auditorium; in one cinema it is row F on the far right, in another it is row A on the far left and in another it is the very back row, far left. Perhaps that morning Dylan had wanted to sit on a particular seat rather than in a particular auditorium?

So I sat turning things over, trying to figure them out. But then I remembered my old diary entry. Instead of staring into my soup, I told myself, I should be enjoying the time I had to myself. A year ago I would have done anything for a bit of space on a Sunday. In the scale of things this was a small step back, after all, not a significant loss.  I had a book of poems in my bag, waiting to be read. And then I would go and look for that laburnum tree I had promised myself…

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The photographs of Dylan were taken by staff during his short break this week. I am really enjoying the laburnum tree which I planted outside my back door.

 

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 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.

Art And Autism: “Psst, you. Hey kid. Yes you”

In a recent post I mentioned that Dylan enjoys art galleries. Actually I would go further: art is not only a comfortable medium for Dylan, his relationship with it seems essential. In galleries Dylan will stand for long periods before particular barnes thesundaytimes.co.ukpaintings, absorbed by the experience to the point of trance. At home I quite often discover Dylan standing stock still and silent, staring at a favourite print. This love of art is something Dylan is at times moved to share; our most frequent ‘conversations’ are about his favourite pictures.

Listening to an extract from Julian Barnes’ new book of essays, Keeping An Eye Open, on the Radio this week I was struck by his claim that ‘it is a rare picture that stuns or argues us into silence.’ For my son, whose world is mostly silent, the opposite is the case. In this post I consider a therapeutic approach to art and in a linked post I reflect on some pictures which move Dylan to words. In trying to understand Dylan’s response to art I ask whether there is something I might learn from his aesthetic about its therapeutic role in his life.

Recovered words, restored sight

Georges Braque, Barnes informs us, claimed that ‘great paintings need us to say nothing at all.’ Dylan, I’m sure, would agree; when he speaks about a painting it is from a place of joy, not need. What Braque had in mind is the explanatory voice which artists hope their work does not require. As Flaubert reminds us, as well as not needing us to say anything, ‘nothing needs to be said’ about a great painting. It is interesting, however, to watch people read accompanying text in an art gallery. In the Louvre with my daughter a few years ago I was astonished to watch a visitor focus on the explanations of paintings to such an extent that it was the text boxes she photographed rather than the paintings. It often seems to me that the majority of visitors read the accompanying caption before looking at a painting – and I could not claim not to have done this myself sometimes.

perry tes.co.ukGrayson Perry, in the 2013 Reith Lectures, noted that our aesthetic is constructed by contexts such as family, education, nationality and religion and validated by ‘experts’ – artists, curators, dealers and critics. Thus as well as being guided by expert views, our response to art is shaped by what is usually a linear narrative through the socio-economic and political contexts from which it arose. Such organisation is helpful, Barnes claims in his essay on the visual arts, because the ‘conversation’ between successive movements is clear and helps us to understand innovation and shifts in beliefs and practices. When paintings are placed next to each other which are not in conversation, he suggests, the result is an ‘aesthetic squabble’ which can leave the viewer disoriented and confused.

Dylan is not swayed by such considerations. Although he responds to what Perry refers to as ‘familiarity’ (i.e. things he recognises), the broader social and historical context of a painting is of little influence and the views of others (whatever their expertise) of no interest. Perry tells us that curators and art dealers consider large paintings and red paintings of high value (based on sales and consumer demand); although one of Dylan’s favourite pictures happens to be quite large I don’t think this (or redness) is part of his aesthetic. Dylan really does plough his own furrow.

So when I visit a gallery with Dylan there is little point in my attempting to hold to conventional ways of viewing. Because text and sequencing are of no consequence to Dylan, the only thing to do is to follow his path. Thus my experience of the space is his: this room is skipped; this one we walk through backwards with eyes closed; in this room we look at one painting; we check everything briefly in this room; at the end of this space, we run twice from side to side; and here we sit down, on this bench, to stare at a favourite painting for as long as I will allow. We don’t read text boxes. We don’t follow any order except for the one Dylan has constructed for this gallery. In this way Dylan restores my sight and is, sometimes, stunned into words.

Psst, you

june 15 024In Donna Tartt’s The Goldfinch, thirteen year old Theo and his mother are caught up in a terrorist attack while visiting a museum. In the moments following the explosion (in which his mother dies) Theo impulsively takes his mother’s favourite painting – ‘The Goldfinch’ – from the wall. The painting will draw Theo into a world of violence and criminality but also serve as a vehicle for the longing he feels for his mother. Towards the end of the tale Theo’s Guardian, Hobie, reflects on the way a painting can take possession of us:

…you can have a lifetime of perfectly sincere museum-going where you traipse around enjoying everything and then go out and have some lunch. But…if a painting really works down in your heart and changes the way you see, and think, and feel, you don’t think, ‘oh, I love this picture because it’s universal.’ ‘I love this painting because it speaks to all mankind.’ That’s not the reason anyone loves a piece of art. It’s a secret whisper from an alleyway. Psst, you. Hey kid. Yes you. (p.849)

I think Dylan hears that whisper from the alleyway.

Therapeutic uses of art

june 15 023Alain de Botton, in his book Art as Therapy and in his pioneering work at The School of Life, argues that we need fresh ways of thinking about our relationship with art. The problem with museums, he suggests, is that they tend to display art using academic and historical categories rather than grouping paintings according to their essential ‘function’. Art, he claims, has seven key functions: remembering; hope; sorrow; rebalancing; self-understanding; growth and appreciation. ‘A more ambitious, and beneficial, arrangement’ of paintings in a gallery, de Botton argues, would be one in which works were arranged ‘in line with the concerns of our souls, bringing together those objects which, regardless of their origins in space and time, address the troubled areas of existence. ‘ (p.91)

There could be a gallery named Tenderness to help us to understand what the quality is and why it is so hard to preserve in the conditions of daily life. We could meet Donatello here, but his presence would be subsumed under a higher heading and enriched by items from other parts of the collection. There would be space for Henry Raeburn’s portrait of the Allen Brothers, currently marooned in the British room, because it matters less that this work is by a Scottish painter of the European Enlightenment, as the caption tells us, than that it, like the Virgin and Child, has many important things to tell us about how to bolster the more delicate inclinations of our hearts. (p. 94)

When I encountered de Botton’s work it felt like a light bulb. Could this be what Dylan does? Is he curator of his own exhibition, using principles similar to those outlined in Art as Therapy? Although some of the thinking made me uncomfortable, it offered a possible way of understanding Dylan’s response to art. In particular I wondered if de Botton’s examples might help me to identify and understand the imagery which attracted Dylan. He has this to say, for example, about William Dyce’s ‘Madonna and Child’ (c. 1827-1830):

… Such an object is delicate with our longings. It knows that we might still need to be mothered, even though we are adults, and that we might still need a great deal of reassurance and kindness. So much of growing up is about becoming independent and getting by without the comfort on offer here. Being a mummy’s boy remains a stinging insult to our autonomy. This kind of toughness represents an exaggerated repudiation of an important need. The painting offers comfort by proxy. In our imagination we can get close to Mary without needing to give up the hard-won advantages of adult life (and it might help our identification that the baby looks about 27). In art, the longing that might otherwise damage us and undermine our claims to an adult identity, finds a safe and acceptable home.  http://www.artastherapy.com/

This description illustrates the way in which the grouping of paintings by function is subjective and problematic; there is little doubt about the classification of Dyce’s ‘Madonna and Child’ as ‘Early 19th Century’ but we could challenge de Botton’s reading of the painting. While not convinced by his interpretation of the image I did find myself intrigued, not least because the Madonna is one of Dylan’s favourite images. In a linked post, therefore, I attempt to apply de Botton’s methodology to Dylan’s pictures and reflect on the possible ‘function’ and role of art in his life.

*

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) ‘Playing To The Gallery’, The Reith Lectures 1-4
Donna Tartt (2013) The Goldfinch. Abacus

Episode One of Keeping an Eye Open by Julian Barnes (BBC Radio 4 Book of the Week, 22/06/15) is available at:

http://http://www.bbc.co.uk/programmes/b05zhhhy

Images:

The photo of Grayson Perry is via the TES and the image of Julian Barnes’ book is via The Sunday Times.

 

Why Friendly Can Be Better Than Relaxed: autism, accessibility and the arts

2014-02-22 14.59.39I’ve been wanting to write about accessibility for a while but have hesitated because ‘Tinc’ (who blogs at Tincture of Museum) already does it brilliantly. Tinc is well-qualified to do so; having resigned a career as a librarian to spend more time with her family (which includes a daughter with Aspergers) she now supports a variety of museums as a volunteer and blogger.

Tinc focuses on a range of issues of interest to museologists but her personal experience of autism means that she has particular insight into the ways in which museums can improve accessibility for visitors who are autistic (see for example her post about the London Science Museum). After Tinc generously tagged me in a round-up of blogs on museums and autism I thought I’d offer some reflections on Dylan’s experience of accessing the arts. In this piece I explore the terms ‘autism friendly’, ‘inclusive’ and ‘relaxed’ in relation to a range of artforms and organisations. There doesn’t seem to be agreement, within or across sectors, about the various terms used by organisations so the sense I make of these definitions is my own, based on personal experience. I make only brief reference to museums, however, and refer anyone with a particular interest in that sector to Tinc 🙂

Definitions

2014-03-23 14.24.44If I encounter the term ‘Autism-Friendly’ I assume adjustments have been made to a venue or event with specific reference to the needs of autistic visitors. Such adjustments could include the selection of material; trained staff; adaptations to the environment to reduce sensory stimuli; changes to the timing and sequencing of an event; production of autism-specific resources; or ring-fencing of places to the autism community.

An event advertised as ‘Inclusive’ may also include adjustments to the environment and scheduling of an event; while these are often helpful in relation to autism, such events are not developed specifically for autistic visitors but aim to improve accessibility for all disabled visitors. I’ve encountered the term ‘Relaxed’, meanwhile, in relation to live theatre performance. My experience was that the event  did not incorporate significant adjustments to the environment. At relaxed performances, however, the audience is not required to adhere to the usual conventions (for example being silent) and audience participation is encouraged. I suggest that not only are such events not autism-specific, some of their features may be challenging for some people with ASC.

Managing without adjustments: libraries and art galleries

2014-03-08 14.38.38Of course not everyone who is autistic requires adjustments in order to access ‘the arts’. Even with severe autism and a language and learning disability, Dylan manages perfectly well without adaptations in some settings. Libraries, for example, are fine; in fact they are one of Dylan’s favourite places and a regular fixture on his weekly schedule. It might be more of an issue if Dylan needed to access the adult section of a library but the material he is interested in is located in the children’s section which tends to be less formal.That’s not to say issues don’t arise: he has had to learn not to remove library labels from books and to accept that an item he wants might have been borrowed by another library-user. These are reasonable lessons, however, rather than accessibility issues.

2014-03-08 14.37.59Because Dylan doesn’t read or write his interest in books is based on his love of illustration. Dylan’s strong orientation to the visual world means that art galleries are also of interest to him and, as with libraries, he manages these without adjustment. Although Dylan negotiates the space idiosyncratically, no adaptations are needed. Dylan has had to learn not to touch and to accept that if other people are looking then he will have to wait; equally he knows that if he stands too long before a painting I will encourage him to move on. But, again, these are reasonable things for Dylan to learn. I don’t think I’ve ever seen an art gallery advertise ‘inclusive’ viewings and I don’t think this is something Dylan needs. I do sometimes wish, however, that separate sessions could be scheduled for those who look askance at Dylan for being vocal or for moving quick, quick, slow.

Understanding adjustments: managing museums

Although, as the blogs showcased by Tinc illustrate, some museums have become accessibility trailblazers, Dylan has so far managed without adjustments; this is not because he wouldn’t benefit from autism-friendly sessions but because I haven’t as yet been able to visit (these are mostly offered by the London museums). Although there are aspects of museums which Dylan finds challenging he copes pretty well. We make regular visits to local museums and, as with art galleries, Dylan has favourite exhibits. In the Millennium Galleries it is ‘cutlery dragon’ and at Weston Park Museum it’s the Polar Bear, the leaf-cutting ant colony and some local landscapes and portraits. Dylan often performs ritual greetings with his favourite exhibits; in front of Bear’s display cabinet, for example, he repeatedly charges a nearby whale harpoon.

The above examples illustrate Dylan’s preference for natural history and art. He also enjoys machines, particularly those involving steam, so local museums linked to our area’s industrial history are popular. Dylan tends to have less interest in social history unless there is something about the presentation which captures his attention; he loves the carriage ride around a Viking village at Yorvik Museum, I suspect, because the reconstruction feels like a movie set.

What Dylan needs when he visits museums is understanding as much as adjustment; at Yorvik for example it takes him a little while to get in and out of the carriage and he needs help to turn off the audio information. Ideally, we need to ride in our own carriage (and have been able to except for at very busy times). Dylan usually gets this sort of understanding in bucket loads from staff at museums. Although members of the public are also usually understanding, if Dylan experiences an obstacle it does tend to involve other visitors. Although this is sometimes because Dylan’s presence unsettles a member of the public, it is more often the other way around. Perhaps one of the key benefits of autism-friendly initiatives is that they offer autistic visitors a bit of time with the museum to themselves.

Inclusive cinema

thechildrensmediaconferenceSometimes an adjusted setting can be a stepping stone to a regular setting and I have used inclusive cinema screenings for this purpose with great success. Dylan has been passionate about film since he was young but because his habit is to watch alone the cinema did not appear to be an option; after various attempts to take Dylan ended in failure I gave up. The introduction of monthly ‘inclusive screenings’ at a local cinema, however, offered me the confidence to try again.

The first inclusive film we attended was one of the Harry Potter films. Although there were still some challenges for Dylan, leaving the lights on low (rather than viewing in complete darkness) and lowering the sound were adjustments which seemed to make him more comfortable. It helped that it was a film which Dylan knew  – and it certainly helped me to know that people would understand if we needed to leave. But, I told myself, I might not feel the need to leave if Dylan was noisy as he wouldn’t, presumably, be the only one. When he stayed in the auditorium until the end of the film that day it felt like my best birthday ever (it was my 50th).

Canal day 006Having spent the last four years taking Dylan to inclusive cinema he is now able to access regular screenings. The first time I tried this it was motivated by self-interest: The Borrowers had just been released and I wanted to see it. It was half term and the cinema was full with school children. I’d managed to get Dylan’s preferred row and seat (right hand side, four from the back, far aisle) but I felt hemmed in and anxious as the trailers started. Luckily it was a Studio Ghibli production which I think helped Dylan through an unfamiliar film in darkness with surround sound and chattering children. At inclusive cinema screenings I had been modelling appropriate behaviour, encouraging sit and ‘sshussh’. It turned out I had coached Dylan well; he pointed to a noisy child seated nearby and said ‘shouting! sshussh!’.

Since then we have been frequent visitors at a range of cinemas. Some trips have been more successful than others and I don’t ever quite relax; I have to stay alert to Dylan’s impact on others as well as to how comfortable he is. One of the things Dylan always does at the end of a film is run to the front and sprint from side to side of the auditorium repeatedly. It is a stim, triggered by the rolling credits which he loves (at home, with no space to run, he flaps instead). At busy regular screenings – especially when there are small children – I have to manage the timing of Dylan’s run to the front  (if people haven’t noticed there is anything different about us, this blows our cover). And because this can be quite stressful, we still go to (and prefer) inclusive cinema.

Relaxed Theatre

Stratford 038One experience which has not been a stepping stone to mainstream events was a ‘relaxed performance’ of Peter Pan at the RSC in Stratford-Upon-Avon last year. Having had some positive experiences of accessibility initiatives an advert for the production caught my eye. Dylan is a serious fan of Peter Pan and it seemed a wonderful opportunity. I loved the idea of being able to take Dylan to the RSC in the same way that I might take my daughter; this was my dream of inclusion.

So, with friends, I booked tickets for a  matinee performance. Dylan and Ella coped with the production but it was challenging for Dylan. The performance did not appear to have been significantly adjusted in terms of, for example, lighting or sound and there weren’t any obvious time-out areas. The play was also heavily language-based and only loosely-based on the original; there is, of course, nothing wrong with this but I hadn’t grasped from the available information that it wouldn’t be suitable for Dylan.

The audience was also challenging for Dylan; the event had attracted school parties and the theatre was buzzing with chattering children. As the performance had a relaxed approach to audience noise this low level hum continued. Dylan tends to vocalise so a relaxed approach to noise was ‘a good thing’ in a way; however, he finds lots of language distressing so spent much of the time with his arm clamped over his head, stoppering his ears. For some autistic theatre-goers this environment would perhaps be tolerable but for Dylan it was possibly worse than a non-relaxed performance. Also challenging was a ‘Question and Answer’ session immediately following the close of the play. Not only had I been unaware this was scheduled, as there was no break between the curtain call and questions we found ourselves trapped in the theatre in what was for Dylan an inappropriate session.

Friendly West End

The only challenge at an autism-friendly production of The Lion King at The Lyceum in London’s West End the previous year had been that it came to an end at all. This was Dylan’s first experience of a live performance and it set the standard. As I recall, the theatre had worked with the National Autistic Society to develop the performance and certainly for me one of the key features of the event was the way in which the theatre staff appeared to be autism-aware.

Before the performance, for example, I witnessed what could have been a difficult incident in the sweet kiosk handled with sensitivity by a theatre employee. At the interval I was in a long queue for refreshments with Dylan, fretting a little about whether he’d understand that we would be returning to our seats with our ice-creams (not familiar with the interval concept he had insisted on gathering up our bags and coats). I overheard a man I assumed was the event manager discussing the length of the queue with members of staff and deciding that there would need to be a delay re-starting the show; everyone had to be served, he said. On balance this seemed like a good decision to me; an unplanned adjustment based on understanding and good sense.

Debris from the ice cream queue was scattered across the cinema after the interval but staff remained relaxed and smiling. Several melting children were carried in and out by parents; doors were quickly opened for them and those in need were made welcome on bean bags in a foyer (where some families, inevitably, spent the entire show). Our children could make whatever noise they wanted and move around if and as they wished. One member of the cast (Scar, I think) took off his mask and explained to the children that he was only a man pretending to be a lion. The show itself (unadjusted in terms of content and length) was magnificent. It had never occurred to me that I could take pleasure in this; I might not be interested in Harry Potter on the inclusive silver screen but The Lion King in the friendly West End: well, that was really something.

And finally

2014-02-22 14.58.32After writing this I’ve realised that understanding goes a long way to making mainstream settings feel inclusive and that special initiatives don’t necessarily make Dylan feel comfortable. I’m also reminded that language-based arts are challenging for Dylan and that the most inclusive arts tend to be visual. Perhaps not surprisingly, cinema is one of the most readily-adapted art forms where small adjustments can make a significant contribution to the quality of someone’s life.

While this post doesn’t respond to the precise challenge set by Tinc I hope that readers from the museum and education sectors, as well as those with an interest in autism, have found it illuminating. I’ve certainly found it helpful to write – thank you, Tinc!

Images:

The photos were taken by me on visits to Weston Park Museum, Kelham Island Museum, Magna and The Millenium Galleries (all in or near Sheffield). Other photographs were taken in the Children’s Library, Showroom and Cineplex in Sheffield and outside the RSC in Stratford-Upon-Avon and (with Ella) at The Lyceum in London.

The Last Lap And The Car Wash

dylan meltI think this might be the last lap. At least I hope so: I’m not sure I have any reserves left for what has been a two year marathon. Since Dylan left school it has been a frustrating time of dead ends and disappointments. I have coped this far but am exhausted; if the finishing post moves one more time I doubt I could manage another lap.

I’ve been enjoying writing some general pieces about living with autism recently. Such reflections keep my eyes on the skies instead of on the grubbing detail of the road. With things in the balance this week, however, I thought it a good time to record what is hopefully the last bit of the circuit. Who knows whether these reflections will indeed turn out to be my log from the home strait but hopefully they will be illuminating.

Replay

2014-08-05 17.24.48If you’ve been following Dylan’s story then you might recall that my original battle, after he left school, was to secure continuing education. Dylan had been happy at school and was a settled young man, calm and with no ‘behaviours’ other than a liking for letting off fire extinguishers and smashing light bulbs. Initially Dylan wasn’t provided with any post-19 education and the social care funding he was offered for day care wasn’t sufficient to cover more than three days a week. When I won a legal challenge against my local council, Dylan was given a patchwork of provision while an appropriate education setting was developed in the city where we live.

For the year after he left school Dylan appeared to cope with part-time care which lacked consistency and routine and which wasn’t autism-specific. I reduced my working hours so that I could support Dylan as much as possible. It was messy and difficult. I felt stressed from one day to the next, wondering how I would juggle different settings and collection times and key workers. So it’s not surprising, really, that by the end of that first year Dylan started to show signs of distress.

The ‘challenging behaviours’ started last June. Some of my posts in the last year have described my search for explanations and answers. With incidents happening daily I took Dylan for neurological and psychological investigation, attended intensive support services, removed sugar from his diet, banned films with ‘separation narratives’ and asked for help from the ‘sex nurse’ (she probably has a different title but that’s how I recorded appointments with her in my diary). All these roads, it turned out, led to what was likely to be anxiety: the best we could do was increase the structure and consistency in Dylan’s care and adjust his activities.

In the last 12 months I have moved from utter disbelief at the changes in Dylan to a realisation that if you are severely autistic with severe learning disabilities and very few strategies for communication, and if your life changes profoundly so that things which you rely on to keep you comfortable – structure, routine, a calm environment and familiar people – suddenly disappear (as happened when Dylan left school) – well, it isn’t surprising is it? Anxiety can provoke feelings of frustration and anger in any of us. In the context of Dylan’s disabilities, his anxiety must some days feel scary indeed.

U-turns, false starts and golden gates

2014-08-05 18.44.12Unfortunately for Dylan the changes in his behaviour triggered further changes. Although one care setting has provided on-going support, other providers (including Dylan’s respite setting) felt unable to, given the changes in Dylan’s behaviour. Following a separate battle for funding, I had finally secured health care support for Dylan; the challenge, however, was to identify a setting with the necessary expertise to care for him.

A number of my recent posts have described the agony and confusion of trying to choose somewhere to live for an adult with Dylan’s profile of need. There are few such settings. Where they exist they are rarely local. Because of their specification (generous space, adapted buildings, small groups, high staff ratios and individualised programmes) they tend to be expensive. Factoring in economic and practical considerations as well as the desire to keep Dylan nearby, it is not surprising that finding somewhere for Dylan would be so difficult.

And then there are the curved balls that can come spinning. I have described elsewhere the way I pulled a u-turn when I lost my confidence (and my bearings) for a setting which Dylan was due to move into after Christmas. It was brave but possibly foolhardy, I was told, to pull out of a perfectly good placement. So I was relieved to quickly find a replacement which seemed just as good and was closer to home. As I recorded subsequently, however, the plan for Dylan to move there after Easter had to be abandoned following a safeguarding issue. I had let myself believe in that placement; getting a phone call to say we would have to abandon felt like a false start (or finish).

I hardly dare write that I think I can finally see Golden Gates glinting up ahead. Like other writers I observe the rule of not talking about a poem until I’ve written it in case I lose the magic. Perhaps I’ll apply the same rule to Golden Gates so as not to break the spell. Besides, even if there is a gilded tomorrow, today there is still this view from the road.

The road

2014-08-06 16.46.52It’s not an easy road to be on if you are in crisis. Even when a setting has been identified the process of assessment and transition takes time. Something that has made these months particularly hard is the loss of Dylan’s respite. At the point at which I was in need of more support I got less. In fact I got nothing. I have written elsewhere about the contribution which respite plays to the lives of carers; having been without it for nearly six months I can confirm this support is vital.

My last night off was 18th December. Since then I have been on duty every weekday from 4pm to 9am and every weekend from 4pm on Friday to 9am on Monday. I have not had a break during this time; I have not been able to go out or even, given Dylan’s anxiety, to have visitors. This period, of course, includes Christmas and other public holidays and celebrations. As well as having an impact on my ability to work (during this time I have had to reduce my hours and resign a management role) I have been obliged to turn down opportunities to perform at events (as a poet) and to attend social activities.

I don’t mean to sound complaining. I’m not. I accept all of the above as the price of caring for someone who is my responsibility and my world. But to be a carer I need to stay well and healthy which means being able to rest and recuperate. I haven’t been able to do that; I’ve found that trying to rest during the day is no replacement for the benefits which come from having a break from caring overnight. For me they are these: not having to bathe and put Dylan to bed in the evening then stay awake until he is settled; not having to be alert through the night in case I am needed; not having to get up early enough to juggle my own self care with waking Dylan in time to bathe and shave [I often skip this stage in truth – I have a lot of sympathy with men on this one] and dress and feed him before it is time for his bus; not having to pace the house waiting for the bus and willing it to arrive in time for me to get to work.

Gardens, mud and dirt

dylanmelt2Dylan’s anxiety has been acute in the last few weeks and his aggressive behaviour has escalated. I have gone on trying to identify triggers but can’t always predict or head off incidents. I am no match for Dylan physically (21 and more than six foot tall, fit and strong) and after being hurt on a number of occasions I have learned to prioritise keeping myself safe. Recently, I have spent a lot of time in the garden where I go, now, to sit and wait until Dylan has calmed down. Sometimes it is five minutes, sometimes 50. Sometimes I am barefoot, sometimes better prepared. Sometimes it is fine, sometimes raining. Sometimes it is light, sometimes dark. Always I wait with my heart in my mouth for it to be over, praying that Dylan doesn’t hurt himself.

I am better at keeping myself safe than I was; I have learned to make judgements about when I can intervene safely and when I can’t. I have agreed strategies with Dylan’s social worker such as keeping my mobile phone with me and when to call for help (I haven’t so far). Clearly it would be better if Dylan could be helped not to feel so frustrated but for that he needs specialist care and support in an environment with the space he needs. I don’t believe, however, that there is a magic formula which will eradicate Dylan’s anxiety; I suspect he may be prone to it through these difficult early adult years. And because life with Dylan can be so unpredictable (and I must stress that it isn’t like this all the time – we have wonderful joy-filled days too) what he especially needs is more than me.

Dylan and I have always had an active life and I’ve continued these activities at weekends. He needs this: he’s a fit and active young man. With incidents happening increasingly often, however, I have recently found myself in compromising situations where I have been hurt or Dylan is at risk (sometimes both) away from home, in vulnerable locations or public space. Three times I have fallen in the last few weeks when trying to catch or restrain Dylan (without adequate training) in order to keep him safe. One incident a couple of weeks ago left me terrified by the combination of Dylan in violent meltdown, an unleashed dog (with slow-to-act owner), bleeding ear (mine) and fast approaching road.

I’m not sure why Dylan was out of control that day; we were in a familiar valley which we have walked many times. Dylan loves to be near water but it can sometimes lead him into a trance-like state which in turn triggers a violent outburst. This  may have been what happened on that Sunday afternoon walk. It was a wake-up call and a turning point for me; I managed to get Dylan back to the car, albeit muddy and bloody, and the next morning I phoned his social worker.

The car wash

33524547-car-wash-with-soapIt took quite a lot for me to admit that I couldn’t keep Dylan safe anymore. Some people have suggested that I might get more support with Dylan if I didn’t appear to cope so well. You appear too competent for your own good, one friend told me. Well I was perfectly happy to admit, now, that I wasn’t. I couldn’t manage weekends alone anymore, I told Dylan’s social worker. Neither Dylan nor I were safe. For Dylan’s well-being and my own safety, I said, if I can’t access some support at weekends then I shall just drive away. I shall leave. I could hardly believe what I heard my mouth say. I wasn’t even aware that I had thought it. I certainly wasn’t sure I could ever do it. But in the silence that followed my announcement, I thought that this must be how breaking point feels.

We explored various options in the aftermath of that incident but in the timescales it wasn’t possible to put together an acceptable alternative for the following weekend (i.e. last weekend). In the end, therefore, I decided to support Dylan myself but agreed that I wouldn’t  access the community with him and that I would put some simple procedures in place to stay safe at home. I approached last weekend with anxiety and trepidation. Fortunately the weather wasn’t remarkable – it’s easier to stay home, somehow, when it’s raining – and I hadn’t lost my creativity. Racking my head for an idea which bent but didn’t break the rules, I decided to take Dylan for a joy ride in the country and then to the car wash. The car wash would, I hoped, be enough to give Dylan the pleasure of running water but without the danger; it was what I judged a ‘contained risk’. Happily, Dylan seemed calm enough as he watched the water cascading down his rear window…

Postscript

I heard yesterday that some emergency respite for Dylan has been approved for this weekend. Dylan hasn’t had any since December mainly because we have struggled to find a provider who felt able to support Dylan given his needs. I’m pleased to say that the place I refer to in this post as Golden Gates are happy to have him. Dylan already knows the setting and the staff and residents and will have a lovely time I’m sure. I’m hoping that although this is emergency respite, it will be the start of what in time becomes transition. May the finishing post stay still long enough for me to guide Dylan through 🙂

Images:

The photographs of fire hydrants and of Dylan curled on one of our local paths were taken by me. They are images I particularly associate with anxiety and meltdown.