Emotes

Dylan turned 23 this month. To celebrate his birthday I took him to Chester for a short break. A trip to the zoo and an overnight stay in a ‘moon hotel’ was followed by a day walking the city walls and looking at the river, canals and cathedral. These are things which Dylan loves and we had a marvellous time.

This year I gave Dylan a remote-controlled car for his birthday. He has taken an interest in cars recently, pointing them out to me and saying ‘car’. His particular interest seems to be black taxi cabs but I couldn’t find one so he has a red saloon instead. Still, its headlights and rear lights flash and it moves left and right as well as forwards and back. It’s quite exciting but a bit tricky to manoeuvre so I’m not sure it will work for Dylan who could find it frustrating  (or pointless).

I didn’t have a particular gift in mind for Dylan this year so I looked around a ‘gifts and novelties’ section of a department store for inspiration.  As well as the car, I picked out a ‘Gentleman’s Hardware’ picnic box which Dylan seems to be enjoying. He often takes a packed lunch on his trips out so this is something he’ll get lots of use out of. While I was in the store, my attention was also caught by a box of ‘Emotes’…

Because Dylan uses symbols to communicate I’m always on the look out for visual resources and the Emotes looked interesting. Essentially, the product is an emoticon glossary, presented as a card index: one side of the card has a picture of an emoticon and the reverse side carries a definition and explanation of use. A fun present for a social media junkie. I flicked through the cards in the box, embarrassed (by how much I had misunderstood) and  amused (pile of poo? really?).

I don’t text very much or use social media language. I understand happy and sad faces, and I include them in messages sometimes,  but that’s about my limit. I’m too scared of making a faux pas after spending years thinking that ‘lol’ meant ‘lots of love’ and wondering why people I hardly knew kept sending it to me. Now, I try and avoid inserting funny faces into my emails and texts.

But while I could clearly learn things from the cards, it wasn’t really myself I was thinking about. Could the emotes help Dylan to understand his emotional life and communicate his feelings, I wondered? Some of the Emotes are the same as makaton signs so would be reassuringly familiar, but there were symbols that might develop nuance and range. Here is worried for example, an emotion which I think Dylan experiences quite frequently:

And this is confused:

Although I spend most of my time encouraging Dylan to find his voice, there are times when this might be useful:

And there’s even a blank to create your own emote. I like the idea of leaving it empty, actually; having an option for not feeling anything strikes me as pretty useful. While the box includes some inappropriate cards (a gun), others would almost certainly amuse (that pile of poo)  or excite Dylan (piece of cake). The set cost £12.00.  I decided to buy one – not to gift wrap  (Dylan would probably think that a disappointing present) but to introduce as part of the on-going attempt to support Dylan’s communication.

I don’t think that, so far, they’ve been of much interest to Dylan.  When I showed them to him on his birthday he had a giggle at the pile of poo and put the picture of a piece of cake in the plastic stand. Fair enough – this was the bit of his day he was most looking forward to.  Dylan also enjoyed the ‘fist bump’ card and quickly grasped this as a greeting or alternative for ‘good job’. Two weeks later, Dylan is still fist-bumping me. The cake is still in the stand, however, and Dylan shows no interest in changing it or in looking at the other symbols. ‘Never say never’, is my mantra, however;  Dylan may pick them up one day.

I do think Emotes are a potentially useful resource for people (children or adults) who struggle to understand socio-emotional communication. And you don’t need to have an autism diagnosis to be in that category lol 🙂

The Tandem Of Memory

Cornwall, 2008

Cornwall, 2008

One of the things Dylan and I enjoy doing (which is perhaps obvious from our blog photo) is tandem cycling. I will not forget our first time. We were on holiday in Cornwall in the summer of 2008 so Dylan would have been 14. Our holiday cottage was close to a cycle hire on Cornwall’s coast-to-coast trail and all week, as we drove by on our way elsewhere, I found myself hankering after a bike ride.  ‘If your brother wasn’t autistic’, I told my daughter, ‘we could do that.’

There are some things which aren’t possible with an autistic child in the family. Mostly I try not to represent this within a deficit framework, as a loss, but focus instead on the opportunities which Dylan’s interests allow –  rides on steam trains for example. Sometimes, though, my daughter or I would sound a note of frustration at perceived obstacles. On summer holidays, in particular, we seemed to be presented with opportunities which didn’t feel like an option for us. So every day on that holiday in Cornwall, as we drove by the cycle hire, I rehearsed the reasons it wasn’t possible.

Dylan wouldn’t be able to balance. He had no awareness of people or traffic so wouldn’t be able to steer.  Even if he managed to stay on and avoid other cyclists he wouldn’t know how to brake. He would fall off and hurt himself.  And he wouldn’t wear a helmet.  He could be seriously hurt. No, it was out of the question. ‘We could get a tandem mum’ my daughter retorted.

While being on holiday with an autistic child can bring to mind all the things that aren’t possible, equally they can stimulate a certain courage. Everyday routines may be enabling when you are living with autism but they can also be limiting; holidays can be like lifting a sash window after rain and letting it stand open just a little. ‘No way’, I replied: ‘we’d both end up in the hospital. Your brother is heavy. And he’s taller than me. No way’.  But all week that window stayed cracked open. And each day, as we drove past, we could feel the air on our faces.

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Norfolk, 2010

Norfolk, 2010

On the day before we were due to leave  I said Yes. In my memory it has remained one of the most joyous days of my life. I remember chatting to the cycle hire lad, explaining the situation and hoping to be talked out of it. There was something encouraging about his nonchalance; he had no doubt that I would be able to manage. He showed us to a car park and told us to practice a little; if we changed our minds that was fine. But oh the exhilaration as I managed the first few yards. The excitement was overlaid by apprehension as we wobbled along  the trail later that day but the main feeling I remember is happiness.

Since then, tandem cycling has been a regular activity. I tried Dylan on a solo bike once, in an empty car park, to see if he could manage but he became distressed.  Dylan wasn’t comfortable or confident and that’s fair enough; I need to trust his evaluation of his own limitations sometimes. And in any case, tandem cycling has all sorts of benefits.  It helps develop  Dylan’s  coordination, for example, and his trust in somebody else. He also learns to work in partnership and to understand the importance of team work.  Perhaps one of the most significant benefits, however, is that tandem cycling requires us to develop alternative ways of communicating.

Monsal Trail, 2012

Monsal Trail, 2012

Because I have my back to Dylan on a tandem we  can’t use the non-verbal strategies we usually do. So, for example, if we approach a junction  I can’t point left then right and ask ‘which way, Dylan?’  because I can’t see his answering point. Dylan doesn’t understand the abstract ‘left’ and ‘right’ so I can’t ask a straight question. What to do? I could make the decision for us but that takes away Dylan’s participation.  I could stop at each junction so we can use non-verbal communication but that means a stop-go ride (not great on a tandem).  So what we have developed instead is a system of vocal response to gesture, something I hope will encourage Dylan’s use of language off the tandem as well as on it (by increasing his understanding of ‘yes’ and ‘no’ for example).

Derwent Water, 2014

Derwent Water, 2014

For me, then, the greatest gift of tandem cycling is that it is a shared practice which requires the social use of language.  Dylan doesn’t simply have to pedal; he has to communicate with me so that we do it together.  Dylan’s limited core vocabulary includes the expression ‘pedal ready’, which he responds to perfectly, spinning his pedal to midnight to bear down on it in time with me:  ‘One, two, three, push Dylan’.  Dylan’s balance is marvellous and he sits impeccably on the back, responding to an increasing repertoire of commands and instructions:  ‘Duck Dylan’ if a tree branch lours too close to my head or ‘Bumps ahead’ if I spot sleeping policemen on the trail. He can, it’s true, be a bit of a slacker at times: ‘Push Dylan’ I shout ‘come on, push’. Sometimes I take my own feet off the pedals to encourage him to put his back into it – and when he does it’s like a sudden wind at mine.

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Clumber Park, 2015

Clumber Park, 2015

Our home city (sometimes referred to as The Rome of England) lies in the bowl of seven hills. You have to be fit to cycle here; whether I turn left or right from my front door within five minutes I have hit a gradient to raise the heart’s beat. Of course the serious athletes and cyclists love it;  high-viz vests jog and glide by my window in a constant stream from 5am till midnight.  But it’s not so great on a tandem when you are at the front and the man on  the back is over 11 stones and not pulling his weight.

Tandem cycling has always been something we do on holidays, therefore, and on the more manageable  trails which criss-cross the nearby Peak District and skirt the lakes and reservoirs. Although I’d love to own a tandem I cannot imagine lifting and securing one on a car roof rack by myself. So instead we hire them when we need to and, since that first ride in Cornwall, have enjoyed fabulous cycling across the country and locally. So last weekend, hankering after a bike ride, I planned a trip to one of our favourite places.

‘It’s exactly a year since we went to Clumber’ I told Dylan on the drive there. I knew that because earlier in the week I’d commented to a friend that the Honesty I’d bought at Clumber Park that day had done spectacularly well in my garden.  ‘In fact’, I said to Dylan, ‘I think that might be the last time we went  cycling’. I fell silent. I’d realised that it was approaching a year since Dylan moved to residential care.  For whatever reason, adjusting to new patterns of contact seemed to have meant less cycling. Then I remembered something:  ‘But you’ve been cycling haven’t you?’ I said: ‘Just not on the tandem with mummy’.  Dylan was silent; he  stared, inscrutable,  through the car window.

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Weir Therapy

Weir Therapy

At the cycle hire all seemed well. It had been raining a little so it was quiet and there were plenty of  tandems available. I decided to book one out for the whole day rather than our usual two hours:  we had a picnic with us and it was still early enough to explore as well as ride our usual route.  Within five minutes of setting off, however, it was clear that something was wrong. Dylan started chanting ‘hego, hego, hego’  (i.e. here we go), not in the excited way he announces the start of something he is looking forward to but repeatedly, meaning ‘I’m not comfortable with this, please stop’.  A moment later, the tandem wobbled and juddered as Dylan put his feet to the ground (something he has never done in all our years of cycling). I pulled up. ‘What’s wrong Dylan?’  I asked. ‘What is it?’  He couldn’t tell me, of course. And I couldn’t figure it.

Time to read a couple of poems...

Time to read a couple of poems…

I set off again but the chanting began instantly and, as we cycled downhill towards the bridge over the lake, Dylan scraped his feet on the ground shouting ‘oops, oops’ (meaning  ‘I’m scared of falling’). I had never known Dylan like this. Unsure what to do I suggested we wheel the bike along the path. This seemed to calm Dylan so after a while I indicated to get back on.  But Dylan was clearly still uncomfortable on the tandem; half way around the lake, a distance from the cycle hire and very close to water, the last thing I wanted was for Dylan to have a full-blown anxiety attack.

For the next hour I took things slowly. We walked quite a lot. We cycled short stretches. I chatted to Dylan while we were cycling to try and distract him from whatever thoughts were intruding. I got us back on the safest and most familiar routes of all the ones we have ever taken in the park. And I headed for the weir which Dylan loves to watch. The water seemed to calm him a little but when we set off again, heading away from the lake and onto a short section of road, Dylan put his foot down. He really did not want to cycle through the approaching gateway.

This is wider than the gate we had fallen at the previous year but still enough to make Dylan nervous.

This is wider than the gate we had fallen at  but still enough to make Dylan nervous.

Then I had a memory. The last time we had cycled in the park I had misjudged the gap between a similar set of gateposts and, for the first and only time in our tandem-riding experience, we took a tumble. It wasn’t a serious spill; we were going at a sedate pace and I took the brunt of the fall and managed to hold the falling bike against me so that Dylan more or less stayed on. But it had shocked him  and he had said ‘oops’ repeatedly as we made our way back to the cycle hire that day. Was that why Dylan seemed so nervous today? Was this now his overwhelming tandem memory?

Once I had made the connection I could sense Dylan’s agitation increasing as we approached the junctions to gated trails.  I made a point of dismounting and pushing the tandem through instead of riding. Slowing to dismount in good time seemed to calm Dylan.  Stopping for a picnic also seemed to help 🙂   Dylan wasn’t completely restored though; he wanted to return the tandem after we had eaten rather than head off again. I persisted gently, building in lots of choice and stops at junctions as well as a detour to look at a ford in the road which Dylan hadn’t encountered before.

 

Transpennine Trail, 2015

Transpennine Trail, 2015

I wouldn’t say Dylan was at ease on the tandem but he was certainly more relaxed. ‘Shall we head back’ I said to Dylan, thinking I should end the day while it was good, ‘and have a drink in the cafe?’ At the cycle hire people were returning their bikes in good time. One family walked by with a trike triggering me to exclaim: ‘Look Dylan – a trike like the one you rode with [naming staff at his residential setting]’. Dylan pulled away anxiously, covering his ears and moaning.  ‘It’s alright’, I reassured him, ‘we’re not hiring one now. Mummy was just remembering something’ (I have been working on ‘remember’ with Dylan recently).

I had been astonished, last summer, when a photo of Dylan on a trike pinged into my inbox. I knew cycling on the Transpennine trail was on Dylan’s programme for that day but I’d expected him to be on the back of a tandem. I hadn’t ever hired a trike because, as far as I was concerned, it wasn’t balancing that was the issue for Dylan but being in sole control.  I had spent years riding tandem with Dylan because I thought he couldn’t steer or brake. Had I got things so wrong?  I was delighted at this apparent development but somewhat incredulous. Later I discovered that shortly after the photo was taken Dylan had steered the trike off the trail and taken a tumble.  Twice.  ‘Why wasn’t he on a tandem?’ I asked. Apparently the staff supporting Dylan that day didn’t feel confident enough to ride one.  While I understood this, I didn’t understand the decision to hire a trike instead: ‘Do you want to leave the cycling for now’ I said to the care home manager ‘and I’ll take Dylan at weekends instead’.

Except I hadn’t managed it since, I thought to myself, as we handed our helmets back to the cycle hire.  Dylan was pulling at me, wanting to get away from the trike: ‘Oops’ he said:  ‘oops, oops’. Could this be what he was remembering as well? Not just the spill from the tandem but the tumble from the trike? Dylan dislikes falling; if his previous two experiences of cycling had involved a fall, no wonder he had been reluctant. I was reminded, once again, of how powerful Dylan’s memory is but also of how quickly he loses confidence.  ‘There’s a saying’, I said to Dylan as we sat with our drinks in the cafe, ‘that when you fall off a bike you get back on again. Well done today.  We’ll come back again soon’.

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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assistiveware.com

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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Transition To Care: the phoney time

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

A bit of everything

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

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

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

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

Lots of mooey

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

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

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

Phoney signs

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

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

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

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

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

Positive signs

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

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

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

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

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

Real time

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

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

All this and it hasn’t yet begun…

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Images:

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

Autism And The Alphabet: Dylan and the ‘W’

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

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

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

See saw

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

Oh look. What’s this Dylan?

See saw

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

See saw

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

Seeing W

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

UUUUUUUUUUUUUUUUUUUUUUUUUUUUU
UUUUUUUUUUUUUUUUUUUUUUUUUUUUU

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

Hearing W

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

How do you spell daffodil?

D- a- double f – o – d – i – l

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

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

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

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

Teaching W

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

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

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

Yelloseesaw [Yellow]

Seesawonderseesawall  [Wonderwall]

Seesawindoseesaws  [Windows]

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

Twheelwheelkit  [Toolkit]

Wheelseesawl  [Owl]

Mwheelther  [Mother]

W 007Looking again

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

W 014

Images:

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