Dylan On The Island Of Sodor

I had the idea to take Dylan to the Isle of Man after reading that it was the basis for the Thomas the Tank Engine stories. The Isle of Man forms the Diocese of ‘Sodor and Man’ and the island’s Bishop is known as ‘Bishop of Sodor and Man’. There is, however, no island of Sodor;  the name is Old Norse and refers to the Scottish Hebrides which were once part of ‘The Kingdom of Mann and the Isles’ but over which the Bishop no longer has authority. The Reverend W Awdry modelled his fictional Island of Sodor on the Isle of Man, inspired by holidays he spent there as a child.

My research suggested the Isle of Man could be an ideal holiday destination for Dylan as well:  far enough to require an overnight stay in a hotel (which he loves), a ferry trip (which he adores) and (once on the island) trams and trains galore.  I am happy to report that the island didn’t disappoint…

Day One

I have kept my resolve of ‘no more Premier Inns‘  and Dylan, it turns out, is perfectly happy to stay in any chain of hotel.  What this has taught me is that Dylan uses language creatively:  when he said ‘moon’  (based on the Premier Inn logo) he meant hotel. Without the word ‘hotel’, Dylan found a word to describe the thing he wanted to talk about.  Now that we are not staying in Premier Inns, he uses the word ‘bed’ instead of ‘moon’.

Our en route overnight stays in Liverpool also reminded me how keen Dylan’s memory is. We had visited Liverpool once before and Dylan had enjoyed riding a carousel at the Albert Docks.  I had forgotten this but Dylan hadn’t; he said ‘horse’ repeatedly over dinner that evening and afterwards set up such a pace along the quayside I fell over trying to catch up. He was heading for the carousel I realised later (unfortunately, not working).

The fall was a shock: I sprawled flat out on the cobbles. Of course, people rushed to help me and I brushed them off – but afterwards I realised I was sore and bruised. It was a good reminder about supporting Dylan; after that, I made sure I kept him within reach, at the end of my voice. ‘You have to wait for your mum. Dylan’, I said. ‘I’m not as quick as you are’. For the first time, I had a sense of what it feels like to be an ageing parent.

Day Two

We left England in a heat wave and sailed to the Island of Sodor on a perfectly still sea. The next day, however, we woke to soaking rain. ‘Henry, Henry’, Dylan kept telling me. It took me a while to realise he wanted me to talk about the story where Henry stays in a tunnel because he doesn’t want to get his paint wet. It turned out that we would talk about Henry a lot during the week 😦

After a drenching on the coast path above Peel on our first day on the island, we headed back to our cottage in St John’s, the centre of the Isle of Man and the site of a Viking Parliament (or ‘Thing’). I was interested in the history and politics of Tynwad Hill but Dylan was more interested in the Tynwald Inn. He really enjoys spending time in pubs;  a packet of crisps and a couple of pints of blackcurrant cordial make Dylan very happy indeed.

We had daily ‘programme strips’ and an assortment of symbols with us and each evening Dylan and I would negotiate activities for the following day.  Later in the week Dylan picked out a ‘pub’ symbol and, looking to see if I agreed, added it on our programme for the following evening. I love it when Dylan’s symbols become genuine two-way communication like this.

 

Day Three

More rain so we drove to Port Erin where we took a steam train to Douglas. Dylan’s delight in the crashing waves in the bay reminded me not to assume that bad weather is a bad thing.

Day Four

As well as steam trains the island has an electric train line. Today we took it from Douglas as far as Laxey where we visited a water wheel – another of Dylan’s special interests. Then, it was up Snaefell, the highest mountain on the island, by electric rail. We couldn’t see much but sometimes it’s the journey not the destination that matters.  Dylan seemed to like riding the electric trains even more than the steam trains.

Day Five

today we woke to a strange silence on Sodor:  it had stopped raining.  We chanced the coastal path, tracking the southern peninsula between Port Erin and Port St Mary. We didn’t see any porpoises in The Sound but it was a fabulous day. The only tricky moment was when the steam train back to Port Erin which I had promised we would take (and clock-watched all day, so as to be in time for) didn’t turn up 😦  Dylan was rattled but he accepted the ordinary alternative (under any other circumstances his heart’s delight) of a country bus…

Day Six

More rain. More road diversions (something to do with Quad bikes and the TT). Undeterred we found a way to Ramsey where we took the electric train south to Laxey, the point at which we had left the line earlier in the week. This was not my best idea; having been to Laxey before, Dylan wanted to re-visit the wheel and take the mountain train again. And the train timetable wasn’t set up to accommodate my itinerary; we had a long wait on the platform for a northbound train. Back in Ramsey, it was still raining…

Day Seven

On our last day we woke to sun 🙂 I had been told to make sure I visited one of the island’s many glens so today we followed a Greenway before plunging into Glen Maye. Here was justification for rain: green, lush, strangely tropical.  Oh it was glorious! The attraction, for Dylan, was a waterfall; he watched the water, transfixed. The glen winds down to a small cove where Dylan threw stones. Then it was a scramble up to the coast path and on to Peel where we visited the castle and (at last) paddled in the sea.

Day Eight

Douglas is famed for its horse trams but we hadn’t seen them all week due to the rain. Dylan had seemed curious about the ‘horse and carriage’ symbol we had with us so I was pleased to see them in Douglas on the day we were leaving. They operate to a strict timetable, however, and there wasn’t time for us to ride around the bay before check-in for our ferry.

Explaining this to Dylan was difficult. He was insistent, pulling me towards the horse and trying to climb into the carriage. A quick-thinking passenger  suggested we ride as far as the Villa Marina and walk back in time for our ferry. I was a little nervous about whether Dylan would get off when the time came but I decided to chance it.  I am glad that I did as it turned out that Dylan had a particular reason for wanting to ride in a horse tram. As we set off he turned to me and said ‘Pinocchio’, with an air of satisfaction. Pinocchio? I replied, puzzled. Then I remembered that, at some point in the story, Pinocchio rides in a horse and carriage; Dylan had made a connection between his life and his books.

On the boat, Dylan loves to look out at the wake behind us.  I had pre-booked seats in one of the lounges and we were lucky that this gave access to a small deck at the back where Dylan could stand. He was there for over an hour after we left Liverpool and it was the same when we left Douglas. As we pulled away, the Isle of Man seemed tethered under cloud like myth.

Day Nine

We stayed a night in Liverpool again on our return journey (sadly, the horse carousel was still not working). Before we left next morning, we called in to see an Egon Schiele/Fancesca Woodman exhibition at the Tate. I hadn’t been to Tate Liverpool before so this was a great opportunity to visit and an excellent end to the holiday. How lucky I am that Dylan shares my love of art – his visual intelligence and sensitivity make him a most excellent person to visit with 🙂

Stopping to picnic on the way home, we needed sun hats; England was as warm as when we left. We had had such a good time on the Island of Sodor, though, the rain didn’t matter. ‘We weren’t like Henry’ I said to Dylan. ‘We didn’t mind getting wet’.

 

 

No More Moons

Dylan and I usually go away twice a year, at Easter and during the Summer. For the first time ever, we didn’t have a holiday at Easter this year. I wasn’t sure whether Dylan would notice but he was clearly disappointed.  Although time is not an easy concept for Dylan he makes associations with key events through the year and keeps track of it. So when I gave Dylan his Easter Egg he looked at me and said ‘cot’ quizzically. He was, I realised, asking me when we would be setting off to a holiday cottage. ‘Not this year, Dylan’ I said.  ‘Boat?’ he asked, hopefully.

I hadn’t booked a cottage (or boat) for Easter because I thought my marking might fall awkwardly  this year and that I would have to work through the break. In the event the students have only just submitted their assignments so I could have taken Dylan away after all. Perhaps next year I will. Meantime, I am experimenting with regular overnight trips instead;  the money that we would have spent on a week’s holiday I am planning to use across the year.  This should mean that I can take Dylan on a short break every six to eight weeks.  I will be curious to see whether ‘little and often’ is better for Dylan than less frequent longer breaks.

So last weekend Dylan and I went to Durham, a place he loves and which he has recently been ‘asking’ to visit again (‘asking’ involves Dylan collecting leaflets of things he is interested in and stacking these up in piles in his bedroom like ‘vouchers’). Conscious that the last time Dylan and I went on an overnight trip (visiting Brighton for his birthday) I  vowed never again to stay in a Premier Inn, I decided  this trip would be a good opportunity to try and extend Dylan’s repertoire.

I knew that moving Dylan from the Moon wouldn’t be easy. Dylan has been fixated on ‘Moon Hotels’ for years and staying in Premier Inns has been part of the raison d’être of our trips. Dylan adores the moon logo and enjoys  the familiarity of the purple branding and predictability of  facilities and services. The buffet breakfast (as much as he can eat of things he loves) is probably also part of Dylan’s love affair with Premier Inns 🙂 I figured that if we were going to stay somewhere different I needed to ensure it offered something the Premier Inn couldn’t; I wanted a hotel with compensating attractions. So I browsed the other hotel options with Dylan’s favourite places and activities in mind and opted for a hotel on the bank of the river which Dylan likes to walk, with a view of his beloved Cathedral.  I also had an Ace in my pocket:  the hotel had a swimming pool.

Staff at Dylan’s care home suggested that I show Dylan the hotel website and include a photo of it on his programme. This seemed to go well. The pool, in particular, captured Dylan’s attention and was the thing he talked about on the run-up to the trip; when he pointed to the photo of the hotel on his programme, the words he said were ‘pool’ and ‘swim’ rather than ‘bed’ and ‘moon’. So I set off for Durham optimistically, fairly confident we had prepared Dylan for the change of routine.

On arrival it was clear that  Dylan had  understood we would not be staying at the Premier Inn; he didn’t protest at all when I made a right rather than a left turn on the walk from the railway station. I had put a note on the hotel booking to say I would be supporting my autistic son and if we could be allocated a twin room with a decent amount of space between the beds that would be appreciated. I had also said that if there was any way we could have a room with a river view that would be fantastic, but that space was the priority.

In my experience such requests are frequently ignored; I have often had to return to reception to ask for an alternative room.  As for adding a note about dietary requirements (I am vegan) I have wondered why I bother.  So I was amazed, on arrival at the hotel, to find that we had been upgraded to a family room (lots of space) overlooking the River Wear and that there was a jug of soya milk in the room.  Dylan seemed to enjoy the space and the view from the window!

Food is very important to Dylan and, happily, dinner and breakfast met with his approval.  Best of all, however, was the pool.  I hadn’t scheduled it on Dylan’s programme as I needed to check it was safe and that I could supervise alone. This is important because Dylan is a non-swimmer with high risk behaviour around water: in the past, he has leapt into water fully clothed, waded out of his depth  and plunged underwater, attempting to stay below.  Fortunately, the hotel pool turned out to be ideal (it did occur to me that had I found otherwise it would have been very difficult to say no):  fairly small, not deep and quiet.  We spent a lovely hour in the water before breakfast on Sunday morning, an excellent way to start the day.

I had assumed that staying at a different hotel would be challenging for Dylan and that it would be important to maintain his other routines while we were in Durham. However, breaking the Moon habit seemed to loosen Dylan’s patterns more generally. So instead of having lunch in our usual café on  Saturday we tried a different  place. I was thrilled; the vegan options were much better and Dylan caught the spirit of adventure and had a Panini.  I am guessing this was a positive experience because he accepted a different café again the next day.

Dylan was also open to taking different routes around Durham,  changing the order in which we did some of his favourite things and trying new activities. So on this trip we walked further down the river path than we had previously and discovered Old Durham Gardens. Further on, we happened on a pub – this was just what we needed after a long walk on a sunny Saturday. Dylan enjoyed it so much I suspect future trips to Durham might involve a walk to the Rose Tree 🙂  Then, on the rainy Sunday, we looked around exhibitions at the Cathedral  and Palace Green Library, something we hadn’t done previously. Again, this was a great success with Dylan’s interest captured by the acoustics of the Great Kitchen and a collection of skulls and bones.

I will be interested to see if Dylan builds some of these places into a revised repertoire next time we are in Durham. Another visit might not involve the same hotel – although we got a good deal on the booking it was more expensive than usual and I don’t want Dylan to grow too accustomed to such facilities 🙂  However, I now have the confidence to try something different again if need be.

 

 

 

What have I learned from this experience?  That Dylan’s ‘routines’ are partly maintained and constructed by me.  Once he has enjoyed something, I tend to let him repeat the experience as it gives him pleasure.  This becomes a pattern that is familiar and dependable and which Dylan starts to recognise. However, he is dependent on me breaking these patterns as well as creating them and I should perhaps be more proactive in suggesting changes to routines. The memory of Dylan smiling and laughing on the train home should help me not to forget this 🙂

 

The Book Hedgehog

In a previous post I lamented the departure of a member of staff who had coordinated the social enterprise activity at Dylan’s setting. During the recruitment process for a new social enterprise coordinator, the workshop and shop at the residential setting remained closed to members of the public and to residents.  This meant that there was a gap in Dylan’s daily schedule which had to be filled with alternative activities. Although staff did their best to keep Dylan purposefully occupied, he was more unsettled during this time and clearly missed his work in the shop.

In my post in December I described how, on the run up to Christmas, Dylan had been insistent that the shop be opened so that he could make the holly wreaths which he associated with that time of year.  I reflected:

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

I am very happy to report that a new social enterprise coordinator is now in post and that Dylan has resumed the ‘anchoring rhythm’ of his daily work in the shop. This seems to be going well. Since the shop re-opened Dylan has been more settled and has seemed generally happier.  As well as enjoying the rhythm and structure of working in the shop, it helps that Dylan knows the new coordinator; ‘J’ worked at the National Autistic Society school which Dylan attended so she is a familiar face. Not only does this mean that trust is already established, the continuity in terms of J’s knowledge of Dylan’s interests and skills is fantastic.

The arrival of J has provided an ideal opportunity to review Dylan’s work and to introduce new activities.  Since the social enterprise activity resumed Dylan has participated in a range of arts and crafts activities including candle making, paper printing and model making. He has also made ‘book hedgehogs’; these are ingenious creations, made by cutting the pages of a book. I am told that Dylan worked carefully and methodically at the hedgehogs; this is not something I would have expected Dylan to enjoy and reminds me (again) of the importance of keeping an open mind. As well as introducing Dylan to new activities, J is planning to continue the woodwork which Dylan enjoys so much.  She has identified some fantastic potential projects for Dylan and a new woodwork bench is due to be delivered.  Some new, and more accessible, qualifications are also planned.  Exciting times ahead for Dylan and the other residents  🙂

In my December post I drew a distinction between ‘consistency’ and ‘constancy’, suggesting Dylan might need the latter more than the former.  At the moment, serendipitously, Dylan seems to have both; the new coordinator provides Dylan with some consistency while the work offers him constancy.

Christmas In A Cave

wp_20161219_003It’s a while since I posted an update on Dylan’s progress. Reflecting on it today I am mostly struck by how well things are going. Christmas isn’t an easy time if you are autistic but Dylan seems to have taken it in his stride this year and coped with the changes in routine which a holiday brings. I suspect that is testament to Dylan’s increasing maturity as well as to our growing understanding of what helps Dylan to manage times of challenge and stress.

We have realised the need to organise Dylan’s weekly schedule, for example, so that it always ends on the day he comes home. What this means is that Dylan’s week is not always the same as a calendar week; awkward for fitting in with staff rotas and fiddly to customise the schedule columns, but worth it to avoid the stress it causes Dylan if the week doesn’t end at home. A calendar week, after all, is a construct and utterly meaningless to Dylan; we have to keep the rhythm of time which Dylan feels.

It took a while for us to grasp what was causing Dylan anxiety about his schedule. After I realised, I thought about how frustrating it must have been for Dylan, trying to communicate to us what he wanted. His attempts to show us had involved such things as him asking us to cut the last day off his schedule. When we had done that he would often want it re-instated. We puzzled away at Dylan’s to-ings and fro-ings about the end of the week. Perhaps we haven’t completely understood what he wants but I’m fairly optimistic that we’re in the right area. Dylan has been pretty patient with us while we’ve been trying to figure this out 🙂 That’s one of the things I had in mind when I referred to his ‘increasing maturity’.

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picture1Dylan seems to have coped with the loss of E, the key worker who settled him into his residential setting and who he had come to love. There were a few incidents in the immediate aftermath of E leaving (to take up a new post) and I was a bit concerned about Dylan. Dylan has experienced the loss of a number of key people from his life over the years, something which has caused him huge sadness and grief. “Mummy will always be here for you”.  I sometimes tell Dylan when I think he is grieving. It can’t always be true, I know, but it seems to help.

So after E left I tried to be more present for Dylan. I resumed my mid-week visits to Dylan, for example, and we went to Pizza Hut for dinner as we had when Dylan first moved to the care home. This seemed to help, perhaps through the association with a period of change which Dylan had already successfully negotiated.

I will be grateful to E for many things but one legacy in particular is her focus on equipping Dylan with strategies for self-managing his anxiety. While we cannot stop Dylan from experiencing anxiety, she explained, what we can do is help him to recognise it and adopt methods for de-escalating it. Tearing paper, for example, is something which seems to calm Dylan and he now has a ‘ripping box’ which he can be directed to when he becomes anxious. Sometimes Dylan doesn’t get to the ripping box in time and tears one of his books or his weekly scheduled instead – but as E pointed out to me, we can always print out another schedule and replace a book, if necessary.

Dylan did quite a lot of ripping in the aftermath of E leaving and I tried to reassure myself, during this time, that this was a positive behaviour and that Dylan was managing his emotions. The extent to which this represents a significant development is clear when I recall that previously Dylan would have become physically aggressive at such times.

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untitledAs well as using methods for coping with anxiety that have been suggested to him, Dylan seems to be adopting strategies of his own. He has always been very attached to a photograph of my mum which he keeps by his bed at his residential setting and brings home at weekends. Recently, Dylan has been carrying the photograph with him on day trips as well.

Sometimes it seems to be enough for Dylan that he has the photograph of his Gran with him and she remains in his backpack during the trip. Other times, however, Dylan gets the photograph of my mum out of his backpack and places it next to him. I’m curious that these times are often in locations which Dylan probably associates with my mum. One day we went to the bookshop, for example, and Dylan placed the photograph of mum on a beanbag then took from the shelves two books which they would often read together: Handa’s Surprise and The Mousehole Cat. I liked the idea that Dylan was sharing the books with his Gran and that he was finding some comfort in this.

I think of the photograph of my mum as an ‘object of reference’ for Dylan. I could consider it inappropriate for him to take it out with him into the community, but I think it is helpful for Dylan and I prefer to let him use it as an emotional support. My guess is that it’s a response to a change in key worker; Dylan is adjusting to the loss of E by referring back to other instances of change and loss. I assume that in due course he won’t feel the need to carry the photograph with him, always.

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christmas-eve-2016-017I miss my mum as well, of course. Supporting Dylan with his grief helps me to manage my own, especially at times when we are vulnerable, such as Christmas. Dylan carrying the photograph of his Gran around with him enables me to talk about her in a way I might not without such an object of reference for grief.  “Your Gran used to like to come here for Christmas Eve, didn’t she?” I said to Dylan as we walked around Castleton village, as we do every year, on the night before Christmas. It’s one of her traditions which I’ve kept going in the belief that continuity helps Dylan to develop a sense of his own life history and place in the world.

Castleton is famed for the caverns which lie beneath its limestone hills and on our Christmas Eve visits we always walk up to the mouth of Dylan’s favourite cave, The Devil’s Arse (or Peak Cavern, as it is also known). Dylan has a particular interest in caves; he likes the blackness and the acoustics, I think. If you have sensory issues, a cave is probably quite a comforting place to be. There is something about cave space which absorbs chaos. So a visit to Castleton, which isn’t far from where we live, is a popular outing with Dylan and we quite often go there to take a trip down a cave. Not on Christmas Eve, however, as it is closed for regular visits. Instead, a Christmas concert takes place inside the cave: a brass band, mince pies and mulled wine, song sheets and family singing. As this completely undoes the usual charm of the cave, it’s not the sort of event I would ever plan to take Dylan.

christmas-eve-2016-015The concert takes place in the early evening so when we arrive at the cave in the late afternoon the gate is barred and I manage to explain to Dylan that we can’t go in as it is closed for Christmas. When we arrived this year, however, it was to the hum and bustle of an earlier-than-usual concert about to start. The cave was lit like a ship and inside people were seated as the band tuned up. Curious, Dylan pulled on my arm. “You won’t like it Dylan”, I said. “There will be music. And babies.”  Dylan continued to pull me over to the gate. The doorman explained there were no tickets anyway: it had sold out in November and two tickets that had been returned that day had been reallocated within five minutes.  Dylan, of course, didn’t understand this. He pulled on my arm. “Let’s go, Dylan”, I said. But we were going nowhere – Dylan wanted to go in. I would just have to let things unfold, I decided, and deal with whatever happened.

christmas-eve-2016-007We were given the nod just as the concert was about to begin. This was probably helpful in that we were able to find seats in the far reaches of the cave, beyond the last row of seats. Dylan doesn’t like mince pies but he’d taken the one he was offered and now proceeded (to my amazement) to eat it. The next surprise was that Dylan didn’t cover his ears when the band started up. Another surprise when he started clapping, spontaneously, at the end of the first carol. And then, glory be if he isn’t swaying to the music, stamping his feet and flashing his best grin at me. And so we spent Christmas Eve in a cave – or at least an astonishing 50 minutes of it, leaving only just before the end, when Dylan decided he had heard enough. I was thrilled by the experience, not just for Dylan, but myself: I got to go to a carol concert this year 🙂

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christmas-day-2016-004This was the highlight of my Christmas but there have been other things to enjoy too. Dylan and I spent Christmas Day, as ever, out in the Peak District with a picnic. This year I had chosen Stanage Edge, hankering after a high place. As Dylan’s visual programmes are produced in advance, I have to make decisions about how Dylan and I will spend our time a week before the activity. When I opted for Christmas Day on Stanage Edge, what I didn’t know was that Storm Barbara was due to make landfall and would be passing through the Peak District.

christmas-day-2016-006Our walk that morning would best be described as ‘challenging’; we inched our way along the edge, battered by high winds. At some point I became anxious that we could be blown over the top so spent most of my energy trying to draw Dylan inland through the marsh and bog I would normally steer him round. “Picnic”, Dylan asked hopefully. If it’s on the schedule, not even a storm can blow Dylan off course…

Dylan certainly extended his vocabulary this Christmas.  “Wee” (wind) he said to me repeatedly.  “Wee, wee”. “Yes Dylan”,  I replied, it’s very windy today.” As we picnicked under a sheltering rock I smiled at the thought that the storm was called Barbara. That was my mum’s name. “It’s your Gran”  I said to Dylan as the wind whipped his Santa hood up around his head – “It’s your Gran wishing you happy Christmas”.

Season’s greetings to those who celebrate

&

Happy New Year

Thanks for following Dylan’s Story in 2016

The Next Step

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

wishing you a safe and happy summer…

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

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.

On Not Putting An ‘X’ In A Box: the disenfranchisement of the learning disabled

Today is polling day in the United Kingdom; people over 18 in England, Wales, Scotland and Northern Ireland will be putting an ‘X’ in a box on a ballot paper. Some people will not be able to vote in the Election, however, even if they are registered: Dylan, for example. It’s not that Dylan isn’t entitled to vote – he has the same right to participate as other adults – but entitlement does not necessarily translate to participation.

One Person, One Vote

WP_20150506_21_02_29_ProThree years ago, when Dylan became eligible to vote, I telephoned a Government helpline for advice on elections and the disabled. Dylan, I was told, could have assistance reading the ballot paper but would have to go alone into the voting booth. I explained that Dylan would not be able to do this; he would need support to allocate and insert an ‘X’ on a ballot paper. Dylan, I explained, could choose between concrete objects which are meaningful to him but would not be able to discriminate between candidates on a ballot paper. This does not, of course, disqualify a person from voting; you don’t have to have a learning disability to be unable to distinguish between politicians. As the organisation Every Vote Counts note:

Like anyone else, someone with learning disabilities has the right to choose who they want to vote for by any criteria they like. It is not up to anyone else to judge if reasons for choosing someone are valid or not. Equally, the decision over whether someone votes or not must be theirs and theirs alone. Carers and support workers are not allowed to make decisions on behalf of the person they care for when it comes to voting.

While it is important to support adults with learning disabilities to identify their own voting preferences, those with significant support needs may be disenfranchised by the stipulation that carers cannot vote on their behalf. Certainly this is the situation that emerged in relation to Dylan. If Dylan couldn’t vote in person, it was suggested when I sought advice, I could request a postal or proxy vote for him. As the Government advisor talked me through the requirements, however, it became clear this was no solution.

Whether voting in person, by post or by proxy, a vote must be cast for the candidate that the person with a learning disability chooses. If that person is unable to engage with the political process in order to do so, this clearly raises challenges in terms of exercising the right to vote. Furthermore, Section 29 of the Mental Capacity Act (2005) states that a person can only appoint a proxy if they have the mental capacity to do so. I can’t see how Dylan can use his vote, I said to the woman on the helpline. It was possible, she suggested, that carers in a similar position to me were claiming proxy votes anyway – but it was up to me whether or not to apply for one, she added.

Two People, Two Votes

independent.co.uk2It is not the case, of course, that because Dylan cannot engage with the voting system he does not have political interests. As a vulnerable adult, Dylan has a stake in policy decisions about disability benefits and the organisation of health and social care. More specifically, he has an interest in public transport systems; inclusive sport and leisure facilities; the maintenance of public parks; and the availability of high quality care workers. These are the things which matter to Dylan and which make a difference to the quality of his life. Because Dylan has an interest in the provision of these local services, on the run-up to council elections (the first vote Dylan was eligible to participate in) I thought about applying for a proxy vote for him. I wasn’t comfortable with the implications, however: firstly because I would have to lie about Dylan’s ‘capacity’ in order to be allocated such a vote and secondly because if it were allocated I would have to vote on his behalf.

news.bbc.co.ukIf I were to vote on  Dylan’s behalf, I asked myself, would I cast his vote the same way as my own? Our interests are shared, after all; an inclusive society which protects the vulnerable and prioritises health and social care. Surely this  would mean two identical votes: ‘one person, two votes’? Or would it? What Dylan needs above all is effective local representation: a confident MP who knows the system, has leverage and can advocate for him. We live in Sheffield Hallam, Nick Clegg’s constituency. Although Clegg’s role as Deputy Prime Minister could have reduced his effectiveness as a constituency MP, that has not been my experience in relation to Dylan. Actually, Clegg was rather good when I asked for his help with a funding problem. Of course I cannot be sure that the swift resolution was due to Clegg’s intervention – maybe it was coincidence – but other parents of autistic children and adults in my constituency have reported similar experiences. I have never voted Liberal Democrat myself but if I were to vote on Dylan’s behalf I might. It is thus possible I would argue, when acting on behalf of someone else, to be ‘two people, two votes’.

Two People, One Vote

independent.co.ukFrustrated by Dylan’s situation, on the run up to today’s election I tried a different approach. I have Power of Attorney for Dylan: were there special arrangements for those with such authority, I asked?  As it turns out, there are, though this proved to be no solution either; as with vote by proxy, the person for whom you hold Power of Attorney has to authorise you to vote for them.

Today, therefore, Dylan and I are still ‘two people, one vote’. I assume that other adults whose learning disabilities mean they are not able to appoint a proxy are in a similar position. In addition, adults with learning disabilities who could vote with appropriate support may be unable to access this. Effectively, this disenfranchises adults with learning disabilities.

An entitlement to vote is not sufficient; it must be possible to exercise this right to vote. The nature of Dylan’s disability means that he requires someone to act in his best interests. While a vote on his behalf could be seen to threaten the principle of ‘one person one vote’ this does not, as I have argued here, have to be the case. It should be possible for the interests of adults with severe learning disabilities to be represented within a democratic system. A simple form, for example, could require those casting a vote on behalf of someone for whom they have Power of Attorney to include a brief rationale. Those of us who support adults with learning disabilities are quite used to justifying the decisions we make on their behalf; explaining a vote would not be excessive burden.

Alternatively, the government could just trust us.

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Reference:
Every Vote Counts provide information and support to people with learning disabilities and their carers.

http://www.everyvotecounts.org.uk/

Images:
The composite images of the three main party leaders are from The Independent and the image of Nick Clegg is via bbc.co.uk