Kissing The Screen

speed cameraSo last week Dylan had Facetime scheduled on his programme on Tuesday and Thursday after his evening meal.  The icon looked like one of those warning signs for road traffic cameras I thought to myself.  I doubted I would be up to speed: I wasn’t even sure I’d created the accounts correctly. If something unexpected happened would I be able to sort it, I wondered?  Or would techno-anxiety get the better of me?

Even though the Facetime symbol didn’t mean anything to Dylan I was conscious that if it didn’t work he might be upset at not completing an activity that was on his programme. It was also likely that Dylan would be less than interested if we attempted to re-schedule (in the future) an activity that hadn’t impressed him the first time. No pressure then. It was with some nervousness I tapped the Facetime icon for the first time last Tuesday evening…

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Proloquo2go (assistiveware.com)

I had spent the previous Sunday restoring both ipads (Dylan’s old one and the new ipad mini) to their factory settings. I had decided that I wasn’t happy with Dylan’s favourite films being ‘in the cloud’ on the mini as he needs to access them without an internet connection (when travelling for example). I was also uncomfortable with the way the ipads were linked, allowing my personal data to be accessed (hypothetically) by Dylan’s support staff.

In the process of setting the ipads free of each other  Ariel’s Beginnings disappeared and some photographs were lost. Other than that, however, the restore was a success and I was able to load Dylan’s resources onto the mini. This clearing of the digital decks also encouraged me to think about how Dylan might use his new ipad in the future. I’ve been wanting to get Dylan a copy of the well-regarded communication software Proloquo2go for a while and, with my newfound confidence, last weekend felt as good a time as any. On a roll, I also subscribed Dylan to Disney Life, an app which allows him to watch any movie he wants as well as offering access to songs, books and games. While Dylan will only be able to use this with an internet connection it is potentially a good use of his pocket money, providing Dylan with on- as well as off-line access to new and familiar resources.

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WP_20160517_006As Dylan didn’t understand what the Facetime symbol on his programme meant he didn’t have the fear I had but nor did he know what to expect. For our first session Dylan was in the corridor outside his room as if unsure where to locate this new activity on his mental map.  I wasn’t surprised – even with some awareness of what would happen I’d wondered where in the house to sit for our Facetime call.

Dylan was clutching his ears and moaning softly, something he does when encountering experiences for which he has no coordinates. I decided to wander around the house, hoping this would help Dylan see we were in real time.  Look Dylan, it’s raining in the garden.  This is what I’m going to cook tonight. The day bed arrived today – let me show you – here I am, walking up the stairs.  As I moved around the house, visiting various rooms, I could see Dylan peeking at the camera from time to time. When I got to the attic (where Dylan watches his old VHS videos when he comes to stay) he lifted his head and looked straight at me.  Good:  I had caught his interest:-)

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facetimeiconDylan finds the telephone distressing and computer activities can make him anxious if they involve audio. I knew, therefore, that I had to stay open to the possibility that Facetime might not work for him. Although Dylan’s glances at the camera during the first session were encouraging it was hard to know if he was comfortable; Dylan needs time to process new experiences and I didn’t want to make assumptions. Perhaps, I suggested to the staff supporting Dylan, I could have a conversation with them while Dylan watched?

This proved really useful as through it I discovered that Facetime is a great way to chat to staff even if Dylan doesn’t join in. I found it far richer than my daily telephone calls as I had so much more context information and therefore a better understanding of how Dylan was.  While I chatted to a member of staff, for example, I could hear Dylan in the background. Because I know Dylan’s vocalisations so well this gave me valuable information about how he was feeling and when to finish the call. Dylan kept drifting in and out of view, drawn by my voice and image, so as well as hearing him I was visually reassured that he was appropriately dressed and (apart from the ear clutching) at ease physically. This information was so much more powerful than any phone call.

When I waved goodbye to Dylan and tapped the icon closed I felt such relief and delight: it was like magic, almost a miracle. How could it be that I could see and talk to Dylan so simply, at the swipe of an icon? I walked around the house smiling:  even if Dylan decided he wasn’t interested in Facetime, I thought to myself, I could use it to chat to staff.

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WP_20160517_004Dylan had a second Facetime session scheduled  for Thursday. After our first session I had emailed staff to say that I thought it had gone well but I would understand if Dylan didn’t want to do it again. I then tried to be as good as my word by not looking forward to our Thursday evening arrangement too much in case it didn’t happen.

Perhaps that’s why, this time, I signed in rather casually at the appointed time rather than ten minutes early, as I had before. Imagine, then,  my excitement when I found a message from Dylan to say he was waiting for me to do Facetime:-)   This time Dylan was sitting downstairs in one of the resident lounges with E, his key worker.  I chatted with E about Dylan’s day and held up some things to show Dylan. Dylan seemed very relaxed next to E on the sofa and looked straight at the camera for a full 15 Facetime minutes. This is great, isn’t it? I said to them.

As I made to wrap up the session, aware that Dylan was getting itchy feet, I waved my hand and blew a kiss. Bye bye, I said, lovely to see you. See you on Saturday.  Dylan looked at me for a moment then suddenly all I could see were his features looming, getting closer – the top of his head first, as he stooped down towards me, then his eyes, nose and finally his mouth, kissing the screen.

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’.

Kicking And Screaming To The Moon

untitledIt’s not Dylan who is kicking and screaming, this time, but me:  all the way into the 21st century. As you might have gathered I am not keen on the digital world.  While colleagues book out laptops for seminars I am still using the laminator and asking the technician for string and stickle bricks.  ‘When you answer the item on your module evaluation questionnaire about my use of technology’, I tell students, ‘please remember that twisting cotton into a ball of twine is technology – it’s just been around a bit longer’.

People who know me express surprise that I have a blog: ‘It’s got pictures in it as well’, someone said to me the other day. But if I can see a purpose to technology I will apply myself doggedly until I have figured it out; Living With Autism arose from a determination to share my frustration at Dylan’s poor experience of transition to adult services rather than the desire to blog.

Purpose. Function. Appropriateness. These are terms I use with students when we discuss the use of technology to support learning in schools.  I apply the same principles to my own use, I suppose, in that I take no pleasure from technology in itself but only in the affordances it offers.  I resist adopting gadgets which I can’t see a role for in my life or from which I think I will derive no benefit. Smart TV, smarter phone, satellite and cable, iPad, iPod, dongles of this and bundles of the other – these might represent wonderful opportunities for others but, I have repeatedly claimed, they are not for me.

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001I might have a heart of string and a head that thinks in pen and ink but there’s nothing like parenting to challenge me – and being the peripatetic mother of an autistic adult, I am discovering, can lead to some unexpected places.

Last week, for example, I bought an iPad. Nothing extraordinary about that but for my steadfast resistance, over the years, to the idea of a tablet computer. So when I announced that I was going to buy one in my lunch break my colleague’s eye-rings widened in disbelief. ‘Have you thought about a mini?’ she asked once she realised I was serious. It would be wasted on me, I told her.

I only wanted an iPad so I could keep in touch with Dylan; as I have noted in previous posts I have found it difficult not to have daily contact since he moved to residential care. Because Dylan is non-verbal I am reliant on staff for information about him during the week. The telephone, however, is not a mode of communication I’m comfortable with and the evening phone call is often a source of anxiety. So when a member of staff mentioned, recently, that some non-speaking residents keep in touch with their family through Facetime my interest was piqued; I had finally been offered a reason for technology I couldn’t resist.

Although I have never owned an iPad myself I bought one for Dylan when he left school in 2013. He has used it mostly for music and film but recently has been developing new skills during ‘iPad time’ which is scheduled on his programme each week. Apparently this has been going well, with Dylan showing an interest in playing games with staff.  It would be great if Dylan could add Facetime to his use of the iPad I told my colleague. ‘You might find your use increases too’, she said as I headed out of the office: ‘If I were you I’d definitely think about getting yourself a mini’.

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WP_20160424_002I did buy one, though not for me. The extra capacity and portability would be ideal for Dylan I decided: I could have his old iPad. So yesterday I rigged up a maybe-system for transferring Dylan’s content to the new iPad mini. My main worry was accidentally deleting the copy of Ariel’s Beginnings I had gone to such lengths to download at Easter. I was also unsure when and how to introduce the idea of a new tablet to Dylan; in the back of my head was the possibility I wouldn’t manage the transfer and would have to have the mini myself instead. So I was hedging my bets a bit; not really telling Dylan what I was doing.

Sunday morning. Dylan hovering. I had promised him a ‘picnic and an explore’ up the next stretch of a river bank we had discovered the previous weekend. I watched with  a sinking feeling as the predicted time for the sync extended itself: 15, 17, 18, 20 minutes the dialog box read.  Dylan was pointing impatiently to the screen. He wanted me to do something but I wasn’t sure what. He gestured to the mouse. To the scroll bar. To the little cross in the corner. ‘We have to wait for it’, I said: ‘Let’s leave it and go downstairs’.

One the final day of our recent Easter holiday Dylan had tried to use his schedule to tell me what he wanted rather than what the schedule told him we were doing. Now Dylan took this a step further: he fetched some brochures and showed me a picture of a hotel bed. Then he pointed to the programme for his week which I had shared with him earlier that morning. ‘Moon’, he said.  He pointed at my computer again and pushed the mouse toward me. ‘Moon’, he repeated.  The dialog box read 5 minutes. This would be five long minutes if we stayed where we were, I thought to myself.  Dylan looked at me and pointed at his programme: ‘Moon bed’. Ah. So that was it!

Dylan had remembered a conversation from the previous week when I promised to take him to a Premier Inn. He’s interested in this particular hotel chain because of the moon logo; every time we drive past one of their hotels Dylan cranes his neck and tells me ‘moon’ or ‘bed’.  Our recent holiday, I assume, has triggered Dylan’s memory of overnight stays in the past and so last week I promised we could do this again.  ‘Soon’, I had said. So when the iPad had finished its sync I decided to search for a moon hotel. It was like magic, I thought to myself as I checked the content, how everything seemed to have restored itself. ‘Would you like to take this special iPad with you to the moon Dylan?’ I said.

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Easter, Restored

Wales March 2016 160Dylan and I had a tradition, for many years, of going away for Easter week; in the last ten years we have spent delightful holidays in Scotland, Ireland and Wales as well as across England and particularly in our beloved Yorkshire Dales. Since Dylan became unsettled in 2013, however,  I haven’t been able to take him away by myself and our Easter breaks have been a thing of the past.

In the new year, with Dylan continuing to do well in specialist residential care, I felt confident enough to book a cottage for Easter week. I chose the Llŷn peninsula in Wales; as well as beautiful walks there are steam trains, churches, castles and slates mines, all of which Dylan enjoys. On the run-up to the holiday I temporarily lost my nerve after an incident with Dylan while I was out in the community. I had struggled to manage the situation on my own and was worried about my ability to keep us both safe if Dylan became distressed in a vulnerable location while we were away. ‘Had I been foolish to plan the holiday?’ I asked Dylan’s care home manager. But she was reassuring:  I had thought things through and based the holiday on Dylan’s needs as well as my own; if I was prepared to be flexible and return home if necessary, she didn’t see any reason why I shouldn’t give the holiday a try.

So on Good Friday Dylan and I set off on our trip. I think we were both really happy to have our Easter tradition restored; there was something wonderfully familiar about the time, like deep memory. Because there have been significant changes in our lives, however, there were things we had to rediscover about each other. Here are seven things I learned…

  1. Dylan’s key worker is key

Wales March 2016 001This was the first time I hadn’t packed for Dylan myself. I wondered whether he would have the clothes with him that he needed and enough music, books and films for the week. What I discovered, however, is that I am not the only person who knows what Dylan needs:-) Apart from a belt and DVD, Dylan had what he required.  Furthermore, Dylan’s key worker had prepared symbols, choice boards and day and weekly timetable strips for Dylan to take on holiday.  She had tried to think of all the things Dylan might need to communicate while we were away. This support proved invaluable!

  1. The schedule is essential

Wales March 2016 008One of the first things Dylan did on arrival at the cottage was give me a timetable strip to fix for the next day. I suggested we might spend the morning looking through leaflets to pick some activities for the week followed by a trip to the supermarket and a walk on the beach in the afternoon.  The weather during the holiday was a mix of blue blown sky and heavy rain; the first day, however, it poured.  After lunch, therefore, I suggested a film. Dylan hovered nearby. ‘Why don’t you get a film?’ I repeated. He crossed his arms.  ‘Dylan’, I said, ‘do you want to watch Pinocchio? Or The Good Dinosaur perhaps?’  Fixed Stare.  After a while he disappeared. I got out a book and settled myself on the sofa. Soon after, Dylan reappeared, timetable in hand, showing me the beach.

We had a lovely walk, of course, and I was glad I hadn’t been so easily let off the hook; we were on holiday in the UK after all and walking the beach in rain is part of the deal.  I was aware that Dylan’s support staff have a method for ‘change of schedule’ and that Dylan is usually happy to accept this but I didn’t attempt it again. Instead, I was careful to promise only things I was pretty sure we would be able to do. What I discovered was that as long as we followed the schedule Dylan didn’t mind if something went wrong.  The day we visited ‘Electric Mountain’,  for example, all the tours were full.  At the booking desk, I felt my heart sink; there would be a scene I was sure. But Dylan was fine; he seemed to understand and accepted my proposed alternative of a steam train by the lake.

  1. It’s getting to the start of something, not the end, that matters

Perhaps this was because, for Dylan, it is getting to the start rather than the end of something that seems to matter. During the week we had a routine of preparing Dylan’s schedule each evening, sifting through the leaflets and symbols to build the next day’s activities. And each day, wherever we went, Dylan carried his schedule with him, pulling the symbols off one by one until the strip was empty. Early in the week I puzzled as to why Dylan removed the symbols  before he started the activity rather than when he had finished it which seemed counter-intuitive to me. I ended the week, however, appreciating the sense of achievement in getting to the starting point rather than the finishing line.

  1. Technology sometimes saves the day week

Wales March 2016 018Holidays might be a welcome break from email and social media but I was glad, on Easter Sunday, that I hadn’t left all our technology at home.  Dylan doesn’t use an ipad to communicate but he has one and at the last minute – literally as we were saying goodbye to his key worker – I decided to bring it with us. I’m not very comfortable with technology  so I didn’t think it likely I’d be able to support Dylan with his ipad while we were away. In the event, however, it virtually saved the holiday.

‘Memo’ Dylan started saying to me loudly and repeatedly as soon as we arrived at the cottage on Good Friday evening: ‘Memo.’  I knew the word was familiar but I hadn’t heard it for a while and couldn’t quite place it. There were pictures of clown fish on the wall of the room Dylan was sleeping in and that night it occurred to me that he was perhaps wanting to watch his Nemo DVD. I looked through the films he’d brought with him; his key worker had restricted Dylan to seven films and Nemo wasn’t among them.

Next day, at the supermarket, Dylan made a beeline for the DVD display. ‘Memo’ he said repeatedly as he flicked through all the racks systematically: ‘Memo’.  There was no Nemo. Dylan became distressed. ‘We will look somewhere else’, I told him. Dylan picked up a copy of The Good Dinosaur. ‘That’s a good choice’, I said. Dylan wasn’t entirely satisfied and continued asking for ‘Memo’ while we shopped. ‘What does he want?’ the check out girl asked. ‘Nemo I think’ I replied:  ‘Do you know anywhere he might find it today?’  But she didn’t. ‘There isn’t anywhere else in the town really’, she replied. ‘We might find Memo’, I reassured Dylan, ‘when we go on our train trip tomorrow’.

What I’d forgotten was that the next day was Easter Sunday and the shops would be closed. Dylan hadn’t forgotten about ‘Memo’ though.  Although he enjoyed the trip his anxiety about finding ‘Memo’ was palpable. When we arrived back at the end of the day Dylan prostrated himself on the station platform in protest. These ‘lie down’ protests can last a while and escalate; I looked at Dylan lying in the rain, face to the ground.  What could I do? Then I remembered the ipad…

A few years ago, when we took a short break by plane instead of car, I had downloaded a couple of films onto Dylan’s ipad. If we went back to the cottage, I told Dylan, I could get try to find Nemo. Eventually I persuaded Dylan to get up – we headed back towards the car. ‘Memo’ he insisted:  ‘Memo’.  And then, another light bulb moment:  ‘Memo’ was not Nemo  – it was Dylan’s word for The Little Mermaid. What he wanted was his beloved Ariel. Could he really not have this with him?

Back at the cottage I discovered he didn’t.  As this is probably Dylan’s favourite film (along with Peter Pan and Pinocchio) the fact he didn’t have it made me realise that Dylan does still need support to pack the things he is likely to want.  My technological anxiety meant it took me ages to get Ariel’s Beginnings onto Dylan’s ipad but I finally managed it. This made Dylan so happy:-)

  1. I’m no longer a carer

It was with a shock I realised that I had lost the rhythm of caring for Dylan; washing and shaving him each day, and supporting him with self-care skills, was something I had got out of the habit of doing. Only eight months since Dylan moved to residential care and already I had forgotten so much.  Instead of doing it automatically, now I had to make a conscious effort to care.

  1. Sugar might not be the problem

Wales March 2016 145‘Shortbread’ Dylan said to me on day four.  Since he has been following a low-sugar diet Dylan bakes with a sugar-substitute so that he can still enjoy sweet-tasting treats. I had neglected to think about Dylan’s supply of sugar-free cake; I didn’t have any xylitol with me and there was no possibility of buying low-sugar products in the places we were visiting. I realised, too late, that I should have made a batch of Dylan’s special shortbread and brought it with us.

As Dylan doesn’t understand why some shortbread is OK for him to eat and some shortbread isn’t,  my refusal to let him have it must have seemed unfathomable. The next day, therefore, I decided I would let Dylan buy some regular shortbread. I prepared myself as best I could for the aggressive behaviour that has been linked with Dylan eating sugar by making sure we were safe home before it was likely to kick in. There was, however, no reaction (except joy).  Next day, curious, I let Dylan have an ice cream (again as we were about to head back to the cottage). Again, nothing.  On our final day: another ice cream. And, again, nothing. Ho hum. What to make of that? Maybe sugar isn’t the problem I thought it was?

  1. Symbols can be reinstated as well as removed

Wales March 2016 185As well as a daily schedule Dylan had a weekly chart which I used to illustrate the number of days we would be staying at the cottage. So that Dylan understood when the holiday would be over I encouraged him to remove a photo of the cottage from the chart each day.  On the final day of our holiday, as I was gathering things for departure, I glanced at Dylan’s schedule: he had stuck all seven photographs of the cottage back up. ‘Very clever, Dylan’, I told him, ‘but I’m afraid we do have to go home’.

As we walked down to the beach to say goodbye I realised Dylan understood this perfectly well. It was good that he was initiating two-way conversation through his schedule, I told myself, even if it was a request to do something over again. I’ll take that as an indication the week was a success: not just symbols reinstated, but Easter restored.

Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

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Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

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References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury

The Ridiculously Heartbreaking Child’s Horse

It’s been a lovely spring day here so there were more people than usual, this afternoon, walking in the valley which runs behind my house. Dylan and I are regulars here; one of our city’s five rivers runs through the valley, providing Dylan with plenty of opportunities for leaning over bridges, leaping across stepping stones and staring transfixed at waterfalls.

Dylan usually steers a wide berth around passers by, especially dog owners, but today he strode purposefully towards a couple walking towards us. He stretched out his arm to shake the man’s hand and declared ‘Kwi’ (Chris). The man’s name was indeed Chris, it transpired, but how Dylan knew this we were unable to figure; Chris and I didn’t know each other nor did he recognise Dylan. ‘He’s been retired ten years as well’,  Chris’ partner observed.

Chris had worked in the special educational needs sector before retirement it turned out, at a school in the city which Dylan might have been allocated had he not attended a National Autistic Society school. I assume therefore that at some point Chris must have visited one of Dylan’s settings or been involved in a joint event. Perhaps he’d had passing contact with a group of pupils, one of whom was Dylan? While I wouldn’t expect Chris to remember Dylan from such a situation, Dylan would have logged the encounter in his memory.

‘Nice meeting you’ I shouted (wondering if I’d recognise them if I saw them again) as Dylan veered off up the valley.

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WP_20160313_004Although Dylan has been walking the valley virtually all his life, since we lived close by he has developed fixed routines. Occasionally Dylan will adjust his route or add something new. Recently, for example, he decided we have to climb some steps and add a spur to the outward journey; I think this is so we can pass by three cottages Dylan has developed an interest in. I’m usually pleased when Dylan decides to change his routine but today I wasn’t sure his proposed adjustment could be considered a ‘development’.

Half way up the valley there is a cafe (featured in the Pulp song Wickerman) which Dylan used to visit as a child. In recent years we have continued on, to the top of the valley, where Dylan enjoys a drink in a country pub instead. When we reached the cafe today, however, Dylan was adamant we were going inside. While Dylan didn’t reject the food I ordered for him I could tell there was something else on his mind – some preoccupation I couldn’t fathom.

Then, as we were leaving, I realised what it was: Dylan wanted a ride on the rocking horse (the one Jarvis describes as ‘ridiculously heartbreaking’). ‘That’s for babies Dylan’ I said. ‘You’re too big’.  And:  ‘You’re a man now’  (making the beard sign). ‘You’re too heavy’, I said. But Dylan clung on. Dylan had loved this horse as a child but he hadn’t asked to ride it for years. What, I wondered, had triggered this request today? I should, I told myself, stick to the line I use about equipment aimed at younger children. Today, however, it felt inadequate: Dylan seemed to have a deep need to ride that horse. ‘Would it be OK’, I asked a member of staff, ‘if my son has a go on the horse?’

As the 20 pence tune started up and the horse began to rock, a look of sweet joy spread across Dylan’s face:

This evening it occurred to me that perhaps it was seeing ‘Kwi’ that triggered Dylan’s desire to ride the horse. Maybe he associated Chris with a particular period of his life during which this was something he did? Could the encounter have unlocked one of Dylan’s deep memories, building and re-building the connections he makes between people and things? Whatever the reason I’m glad that, on the eve of his 22nd birthday, I let Dylan ride the ridiculously heartbreaking child’s horse.

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The youtube clip is of the Pulp song, Wickerman, set to narrative film shot in Sheffield by Stephen Woollen. The cafe and rocking horse can be seen at 3:39-4:14.

Things To Celebrate

March 2016 002My presentation at last week’s National Autistic Society conference seemed to go well I’m pleased to say. I will share a summary of it, and some reflections on the conference more generally, very soon. In the meantime I have two pieces of news to share.

Firstly, I am delighted to report that Dylan started an ASDAN qualification in Horticulture yesterday. Isn’t that marvellous? I have mentioned, in previous posts, how much Dylan enjoys working with the activities coordinator in the social enterprise shop at his  home. This has become a very positive aspect of Dylan’s programme and it’s fantastic that the work Dylan is doing is being recognised in this way.

In my conference presentation last week I referred to my attempts, when Dylan left school, to secure post-19 education provision for him. It seemed to me that, in my area at least, the developing agenda around community-based autism services had created a situation which was working well for some individuals but had nothing to offer to others. This seemed, in general, to divide around what is sometimes referred to as ‘high and low functioning’ adults (terms I dislike).

So many people, at the time, were of the view that education was not possible, or even appropriate, given Dylan’s intellectual disability and limited communication. I should focus instead, I was told, on identifying social care provision for Dylan. By the time the Local Authority had accepted their obligation to provide education services to autistic adults with complex needs, Dylan was too unsettled to access such provision. It is ironic, perhaps, that it is through a residential setting  – a model of provision which some people argue should be phased out – that Dylan has finally been able to access the education which is appropriate to his needs and from which he can benefit.

I have always argued that the challenge, in the aftermath of the Winterbourne View scandal, is to ensure residential settings for adults with disabilities are excellent rather than to close them down. While community-based support will be an infinitely better option than residential care for some adults (providing it is properly resourced) there will always be others for whom residential services are essential. Our task, surely, is to identify what the key factors are in the development of excellence in relation to residential settings for autistic adults?

When parents and relatives visit a prospective home for autistic adults they try to make careful judgements about the setting. Is this a safe place? Is it a happy home? Are the residents purposefully engaged and well-supported by trained and caring staff? Such judgements can be difficult to make, however, and parents receive little support with the decision. We do our best but, inevitably, worry about whether this will be good enough.

2Happily I’ve never doubted that the home I eventually chose for Dylan was the best that could be. Even so, it was fantastic to receive independent confirmation of this at the weekend: Dylan’s home, I am delighted to say, has been judged ‘outstanding’ in a CQC Inspection. It’s a wonderful acknowledgment of the time, effort and care the staff and management invest in Dylan and the other young people at the home.

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The pictures of Dylan are from the Home’s February newsletter to parents. They show Dylan working on the firebrick stand he has been making as part of his woodwork project.