At-Ankle Support

wp_20170205_013As I’ve mentioned previously, Dylan has a tendency to jump. When I say jump I really mean bounce. Or perhaps pogo is a more accurate description. Because Dylan’s jumping seems not to be to touch the sky (as Higashida explains this behaviour in The Reason I Jump) but to relieve extreme anxiety. There are happy exceptions, but Dylan’s jumping is mostly a sign that something in his world has gone wrong.

I’ve always been a little bit scared of Dylan’s jumping. It doesn’t sound threatening, I know. Jump.  Quite Innocuous really –  fun and friendly, even. But when someone is pounding up and down, over and over, higher and higher, bending at the knees to increase height and acceleration – well, in a restricted indoor space it is intimidating and outdoors, in a high risk environment, it can be terrifying (I will never forget a cliff top episode that nearly ended in tragedy).

Dylan’s jumping has been less of a concern since he moved to a specialised setting where his anxieties have reduced. When he needs to jump he has staff to support him and a safe environment. The rooms at the residential setting are larger than an average home environment and there is space for Dylan to jump in order to manage his anxiety. Because, as Dylan’s Behaviour Support Coordinator stresses, the behaviour is functional for Dylan; if his anxiety escalates then the sensory experience of rhythmic leaping into the air is something which Dylan seems to find helpful.

This slideshow requires JavaScript.

 

wp_20170205_014But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while  jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .

We have become so used to exchanging images by email it’s easy to forget that this is still a recent development; a few years ago I would have had to drive to Dylan’s care home to see the situation for myself. Without doubt, new technologies are helpful in supporting communication between a residential setting and family home and thus in promoting an active partnership around care. Daily phone calls and email updates not only reassured me about Dylan’s injury, they enabled me to take an active part in discussions about how to support him with it.

Helping Dylan to manage pain and encourage healing is challenging as Dylan won’t take oral medicines and will tolerate only very limited interventions. Furthermore, Dylan is a very active young man who is constantly on-the-go. The ankle injury was therefore significant in that ‘resting it’ was not realistic; sitting quietly with his feet up was not something Dylan could understand or accept.  The doctor, however, advised that there were benefits to keeping an ankle moving after such an injury as some mobility promotes the healing process. It was really therefore a question of degree:  ice-skating on Friday would have to be cancelled but a brief walk around a favourite museum on Wednesday would be OK.

*

wp_20170205_015Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.

Although I was sorry that Dylan had to lose his fabulous first key worker recently, as E’s new role in the organisation is regional Behaviour Support Coordinator, Dylan still gets to benefit from her expertise. So when I asked for a review of Dylan’s jumping after the incident it was to E that Dylan was referred. The incident analysis which she conducted suggested patterns to Dylan’s jumping. This particular incident, for example, seems to have occurred when Dylan became frustrated about his swimming towel not being folded in a particular way. A newish member of staff wasn’t aware of the importance of this to Dylan who became frustrated at his inability to communicate how he wanted the towel folded. Tracking through Dylan’s records revealed other incidents when Dylan had become frustrated by a routine not being followed.

When Dylan chooses a jacket potato for lunch, for example, it is very important that two portions of butter are placed on the side of the plate (so he can put the butter on himself) rather than the potato being served with butter already added. Such details may seem minor to us but they can mean the difference between happiness and despair to Dylan. The thing is, E noted, she had got to know Dylan so well during her time as his key worker that she instinctively built Dylan’s routines into her care and modelled these to other staff with whom she was working.  Furthermore, members of staff who know Dylan well are familiar with the signs that he might be about to bounce and are often able to react in order to head off the jumping. There had, however, been a number of staff changes and some of this ‘craft knowledge’ of Dylan’s routines had been lost.

While Dylan’s basic care routines are recorded in his care plan there was perhaps a need, E suggested, to produce more detailed written guidance about Dylan’s context-specific routines. As the review of Dylan’s records had suggested that a significant number of Dylan’s jumping incidents happened around food choices, E suggested that Dylan’s communication book be enhanced so that he is more aware of what food options are likely to be available on a particular day. This might help Dylan to manage his expectations around meals, particularly in the community.

*

wp_20170205_012Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication.   There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely.  As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.

Nonetheless, reviewing and developing the symbols we use with Dylan has to be worth our constant time and attention. E has some other ideas for communication which we hope will empower Dylan. She has suggested introducing a key ring system, for example, to promote independence.  Again, there is nothing radical about this  – I tried using a key ring with Dylan when he was around seven years old. But the point is to go at Dylan’s pace and to find methods with which he’s comfortable; some of the strategies I tried with Dylan as a child, without success, may be more effective now.

While some autistic children and adults are confident users of communication software, this hasn’t been something which has worked for Dylan so far. I suspect this is because of Dylan’s dual diagnosis of intellectual disability and autism, a combination which impacts significantly on communication and thus on Dylan’s life more generally.  As Dylan’s ankle injury demonstrates, this can affect physical health as well as emotional well-being.

*

wp_20170205_011I’ve written previously about the importance of promoting positive contact with the health services for autistic children and adults with intellectual disability.  Happily, the annual ‘Cardiff Check’ seems to have borne fruit in that Dylan seems comfortable visiting doctor’s surgeries and hospitals, although he won’t tolerate much in the way of intervention.  Coincidentally, Dylan’s annual review was scheduled  last week so the GP was able to check his ankle during the appointment. It had been, the doctor suggested, ‘a very bad sprain’ but seemed to be healing nicely and he had no concerns.

My concerns that Dylan might damage his injured ankle by bouncing on it have, happily, not come to pass.  ‘I absolutely take your point about improving communication’, I had said to E after Dylan’s accident, ‘but what if Dylan does start to bounce? We need to be able to redirect him, at least while his ankle is injured’. E suggested that we encourage Dylan to make use of his exercise ball at such times; seated-bouncing on his ball, she explained, would deliver the rhythmic movement which Dylan appears to benefit from but the ball would take the impact of his weight rather than the floor. Staff could use a ‘Stop’ card with Dylan at the onset of bouncing and re-direct him to the exercise ball.  Longer term, the aim would be for Dylan to develop the habit of seated-bouncing rather than his standing leaps.

While Dylan’s ankle has been sore he has been happy to make more use of the exercise ball. Dylan uses such a ball as part of a morning exercise routine so it is a familiar piece of kit. Although this is not something which can be used outside the home, it feels positive as a strategy for promoting emotional self-regulation. The hope is that once Dylan has accepted re-direction to the exercise ball he will use it voluntarily, instead of jumping.  As he learns to manage his anxiety, staff will support Dylan to use other resources, such as his weighted blanket and a ‘sensory box’. This sensory approach makes sense to me; I bought an exercise ball for Dylan to use at home and I must confess to having bounced on it myself, one evening last week, after a particularly stressful day 🙂 As ever, there are self-care lessons to be learned from caring for Dylan.

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.

 *

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.

 *

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.

 *

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’.

The Familiar And The Strange

WP_20160429_002

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.

*

WP_20160430_001

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.

*

York Feb 16 001

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.

Chester 05-16 017

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.

*

Chester 05-16 004

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.

Chester 05-16 002

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.

*

Chester 05-16 014

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.

Chester 05-16 009

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. 

*

Chester 05-16 010

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.

*

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’.

*

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.

untitled

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.

*

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.

*

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.

Day 40: Standpoint

trance2You have to find multiple and competing perspectives, I told my students; the aim is to look at your chosen issue from a variety of standpoints. But, a student asked me, what if I can only find one? What do I do then? Perhaps, I replied, you try to imagine another point of view?

We have been looking at visual sources of information this week, analysing them for content but also discussing their reliability as a way of knowing. Sources based on visual rather than verbal data, it is claimed, can be helpful as a way of understanding those whose ‘voice’ it might otherwise be hard for us to hear: very young children, for example, or people who (for various reasons) don’t use language to communicate.

Inevitably, while discussing this, I thought of Dylan. Without recourse to language I have had to understand him through a sort of visual anthropology. I have scrutinised videos and photos of him and observed his actions and interactions. I have watched each body twitch and facial gesture, logged his outbreaks of frustration and anger. It is with these visual sources of information I build my theories of Dylan: how he feels, what makes him anxious, why he sometimes becomes aggressive. It is by such methods I make my claims.

One of the claims I have made recently is that three factors have been crucial to the success of Dylan’s move to residential care. The underpinning assumption that Dylan’s placement is going well is based on empirical observations of the sort made by anthropologists or ethnographers; in this instance, that there has been a significant reduction in Dylan’s ‘challenging behaviour’ and an increase in his positive behaviours. What evidence is there, however, that the three factors which I cite are responsible for these changes in behaviour?

This week, as I urged my students to find ways of considering competing perspectives, I asked myself whether I had really done this in relation to Dylan. If I were to test my claims, I reflected, I might need to look at what Dylan has lost as well as what he has gained. It may be the case that he is calmer because of the benefits his new placement brings. Another way of looking, however, might consider whether there was something in Dylan’s life, previously, which was causing him distress? And that, I told myself as I cleared my desk for the weekend, would be a challenging standpoint.

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.