The Next Step

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

wishing you a safe and happy summer…

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

Small Steps Back, Big Leaps Forward

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

The 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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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:-)

*

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.

*

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.

*

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.

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Easter, Restored

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

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

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

  1. Dylan’s key worker is key

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

  1. The schedule is essential

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

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

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

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

  1. Technology sometimes saves the day week

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

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

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

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

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

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

  1. I’m no longer a carer

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

  1. Sugar might not be the problem

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

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

  1. Symbols can be reinstated as well as removed

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

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