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’.

 

 

A Fruit Shoot And Pastilles At 23,000 Feet: autism and air travel

The wind is rising – we must try to live (Valery)

In my last post I mentioned that Dylan and I were about to take a railway tour in Scotland. I booked the holiday at new year when Dylan seemed a bit down; he’s not had an easy time since leaving school and it seemed to me he needed cheering up. Around that time, serendipitously, Dylan received a larger-than-usual payment from his father as the final settlement of a child maintenance arrangement.

It’s possible as the parent of a disabled child (particularly one in need of long term care) to spend time worrying about planning for the future. It would have been easy for me, then, to bank the windfall. However, conscious that I was acting for Dylan, I considered the question I periodically ask: What would Dylan be doing now if he wasn’t autistic? Dylan is 20. At his age, some young people might use an unexpected gift from a parent to clear their student loan or avoid getting into further debt. Others might spend a cash bonus on a second hand car. No doubt plenty of 20 year old’s would upgrade their phone or buy a new gadget. At 20, I reminded myself, I had spent every last penny I had on travel. It was likely, I decided, that Dylan would choose to spend rather than save the money he’d received.

It was relatively easy to identify what Dylan would spend his money on – while his material needs are simple Dylan loves holidays. The short break rail holiday in Scotland I decided on presented itself as suitable and perfectly formed: three iconic rail trips (including one across Harry Potter’s viaduct) and a funicular, coming in on budget for the right sort of duration at the right sort of time and location. When I booked the holiday I had already taken Dylan on day trips by steam train (which you can read about here). This slightly longer break promised to be an extension of what had already proved a winning formula. There were, however, some features of the holiday which would be different and could be challenging. In particular, I had made an impetuous adjustment to our travel arrangements which, once made, caused me some trepidation.

 A Bit of Stretch

I have a habit of looking for opportunities to build ‘a bit of stretch’ into Dylan’s life. I have found that I can introduce new and potentially challenging experiences to Dylan providing I support these with some familiar routines and activities. Looking for ways of extending Dylan is good for two reasons. Firstly, if I don’t introduce new things to Dylan I am capping his potential for development and happiness. Secondly, the longer I leave it before introducing something, the more chance there is that Dylan will resist it when I do. When I booked the short break in Scotland it occurred to me that as Inverness, where our holiday would be based, was a relatively short distance from our local airport, it was a perfect opportunity to fly.

Flying might not seem like a big deal but for an autistic person it can involve significant preparation. Dylan had flown once before but he was only six at the time. Although he perhaps remembers his childhood trip, I wasn’t sure how much it was going to help Dylan. It seemed to me that Dylan may exhibit more anxiety about flying as an adult, particularly as he has developed a wariness of heights. Nonetheless I decided to try and build on his earlier experience as part of preparations.

On the run-up to the holiday I showed Dylan a photograph of his previous flight, prepared some rebus symbols and taught Dylan the makaton sign for plane. It can be tricky to judge how much to share with Dylan and when to share it. I didn’t want lack of awareness to make Dylan anxious on the day but nor did I want to create anxiety with information he didn’t need. One day, out walking, an aeroplane passed overhead. I pointed to it then at the two of us and made the aeroplane sign. ‘Fall’, Dylan said looking at me anxiously.

I love these moments when Dylan demonstrates that he is capable of complex thinking; his awareness of the material world, I realised, had developed enough for him to question the possibility of flight. Dylan is right of course. During the trip I was reading Julian Barnes’ remarkable book Levels of Life. Barnes reminds us that early aeronautics was considered to be not just a ‘supreme emblem of modernity’ (along with photography and electricity) but a form of magic. In the beginning, Barnes writes: birds flew, and God made the birds. Angels flew, and God made the angels. Men and women had long legs and empty backs, and God had made them like that for a reason. (Barnes, 2014, p.11). But don’t worry, I told Dylan: we will not fall.

It was good for me to focus on Dylan’s worries about the trip instead of on my own. One of my anxieties focused on luggage. Apart from the trip to the USA we have only taken holidays with Dylan by car. This is partly because private transport is flexible and allows a swift response to individual need. It is also, however, for the convenience of transporting the things required to maintain Dylan’s routines. I remember one holiday when we travelled with 12 cans of macaroni cheese in the boot of the car. We would often take a small TV set with us so that Dylan could watch his videos. Later a portable DVD player was a huge help – though Dylan insisted on travelling with large numbers of DVDs. Recently I’ve been trying to introduce an i-pad in order to travel light but with only limited success. How, I asked myself, was I going to manage the flight to Scotland?

Dylan, I realised, was going to have to accept that he couldn’t take his usual pile of books and DVDs with him. A few days before the holiday I decided that as well as taking fewer things Dylan would have to take responsibility for his own belongings. This, I thought, could be challenging. Dylan is physically able and stronger than I am so the issue was not the weight but his willingness to carry. There was also the issue of keeping his luggage with him (it was possible he’d abandon it) and, probably crucially, his awareness of other travellers. To encourage a sense of responsibility for his luggage I took Dylan to choose his own trundle case. I was surprised when he insisted on aubergine – not the colour I would have picked out and a good reminder that I don’t always know what Dylan likes. We spent two hours in the city centre practising walking with the case: abandoned once and rolled over twice but no scraped ankles. Fingers crossed for Manchester Airport.

 Lounges, Walkways and Yellow Lines

Arriving at Inverness Airport

Airports are not an ideal environment for autistic people: they are noisy and crowded, usually involve queues and waiting, may be subject to unplanned changes to schedule, and present sensory challenges particularly in relation to sound and touch. On the face of it, this is not an environment you’d enter unless you absolutely had to or the benefits far outweighed the costs. For us, this was exactly the point: in case Dylan ever needed to fly, I wanted to have done what I could to prepare him; if it turned out Dylan could cope – well that would open up a whole new world.

I know when Dylan is experiencing sensory challenge because he has developed a strategy for blocking. He scrunches his eyes up, twists his head to one side, towards the sky, and marches stiff-limbed past the source of disturbance. Sometimes Dylan blocks both ears with a single arm clamped over his head though he can do this, I think, for reasons other than sensory disturbance.

It was clear that Dylan experienced sensory disturbance in specific locations in the airport. However, it wasn’t where I would have predicted. The airport lounges were fine, as was the aeroplane itself. For Dylan, the problem areas were the connecting inside walkways (tube-shaped and clinical). The moving floors helped compensate; Dylan loved these enough to cope with the weird acoustic tunnels. Outdoor walkways at the airport, by contrast, were a huge hit. A yellow line on the floor to direct passengers between terminals was a massive help when covering the distance between the railway station and Terminal 3; Dylan understood and enjoyed walking the line which meant I didn’t need to guide him through a busy environment.

Checking Baggage at Inverness Airport (return trip)

I had booked a flight which left enough time for us to get to Inverness by train if Dylan wouldn’t board. Although our flight was at 9am on a weekday morning Terminal 3 was calm. This is no doubt because it is the domestic rather than international terminal. I’m sure this helped; introducing air travel on a short flight, via a local airport, was probably sensible. The other thing which helped was having alerted the airline (in this case Flybe) to the fact that I was travelling with a disabled passenger who may or may not board and who might need adjustments.

Although Flybe are a small budget airline I can’t fault their service and care. They were flexible about making adjustments, happy to take their lead from us and to respond to Dylan’s individual needs. Seat reservations and boarding priority were made for Dylan then adjusted in response to how well he was coping. At Manchester Airport, Flybe paged us to check that all was well when we didn’t present for early boarding. Sensitive adjustments were also made to customs checks; Dylan was given the time he needed to remove items for the scanner and allowed to carry his Thomas The Tank Engine book through the security arch. Everyone in the chain of customer service appeared to be aware of and expecting Dylan on the flight that day. This made an enormous difference to our feelings about the trip and thus to its success.

Dylan’s suitcase being loaded at Inverness

The trickiest moment? Undoubtedly baggage check. That aubergine trundle case turned out to be a big hit. So just why should I expect Dylan to let it go chugging along some rubber belt and topple off the end into the abyss? Would he let go of his new case with his favourite sneakers and hats in? After all my exhortations to him to ‘keep hold of your case Dylan’? Of course not.

I did, eventually, persuade Dylan to put his case on the conveyor belt though he wasn’t happy about it. The return journey, though, reminded me how quickly Dylan can learn; this time he checked-in his baggage like a pro. Inverness Airport is small and, again, the calm atmosphere was great for Dylan; while we were waiting to board I noticed Dylan’s little aubergine case being uploaded to the hold. Look Dylan, I said – there goes your case. But, already a nonchalant flyer, my boy wasn’t interested.

 Cloudland

After take off from Manchester

Written following the death of his partner, Barnes’ book The Levels of Life is a study of grief using the metaphor of flight. Tracing the early flights of pioneering balloonists, Barnes quotes Dr J.A. C. Charles, a physicist, who made the first ever ascent in a hydrogen balloon on 1st December 1783:

When I felt myself escaping from the earth, my reaction was not pleasure but happiness… It was a moral feeling, I could hear myself living, so to speak. (Barnes, 2014, p. 12)

As we lifted off from Manchester Airport, and gained height, I thought I could hear Dylan living, his face not just pleasure but happiness. ‘Snow?’ he said to me with the rising intonation in his voice I have noticed recently, and which suggests he understands the role and purpose of question. ‘Clouds’ I replied. ‘They look like snow. But they are clouds’.

I don’t know whether Dylan knew the word ‘clouds’ before last week or if he had paid them much attention before. I like to think that they were part of Dr Charles’ moral feeling and that they also contributed to what the actress Sarah Bernhardt described, after her short balloon flight, as ‘not silence, but the shadow of silence’. This seemed to be an appropriate place for my son whose world is, if not completely silent, then one around which the shadows of silence have been thrown.

Barnes tells us that Bernhardt felt the balloon to be ‘the emblem of uttermost freedom’ and Felix Tournachon, another early aeronautist, referred to:

 the silent immensities of welcoming and beneficent space, where man cannot be reached by any human force or by any power of evil, and where he feels himself live as if for the first time. (Barnes, 2014, p. 13)

Manchester Airport

Although Dylan and I weren’t in a hot air balloon last week, we were in a smaller aeroplane than I had anticipated. I had been alarmed at Manchester airport to find that we were expected to walk across the tarmac to a plane which appeared to have propellers. Oh dear. In all the preparations for Dylan I had forgotten to remember that I did not enjoy flying. In the event it was me, not Dylan, who needed support. I had only ever flown in jumbo jets. This experience was quite different; I could see the cockpit and the pilot’s face and could feel every rush and tremble of air around us. For Dylan, this was marvellous, but while he was living as if for the first time, I was fretting as if it were my last. As we landed at Inverness I was the one clutching onto Dylan. ‘Whoops!’ he laughed at me. ‘Bump!’

Inverness to Manchester

Barnes tells us that on her flight in the Doña Sol in 1878 Sarah Bernhardt drank champagne from a silver goblet and ate tartines de foie gras and oranges. Fred Burnaby, meanwhile, is reported to have taken two beef sandwiches, a bottle of Apollinaris mineral water and a supply of cigars on his 1882 trip in The Eclipse. It was not, apparently, recorded what food Felix Tournachon and his travelling companions took with them on their trip in the ultimate balloon, The Giant, in 1863. I am able to report, however, that Dylan ate fruit pastilles and drank a fruit shoot during his 2014 flight from Inverness to Manchester.

In his book Levels of Life Barnes brings together ‘things that have not been put together before’ in order to show us how the world can be changed. Love, Barnes writes: ‘is the meeting point of truth and magic. Truth, as in photography; magic, as in ballooning’ (Barnes, 2014, p. 37). Dylan reminded me, throughout our time in the air, of the magic which is flight. Dylan’s world, I realised as I photographed the clouds, had been changed utterly.

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Aeroplanes are beautiful cursed dreams waiting for the sky to swallow them up (Hayao Miyazeki)

Reference:

 Julian Barnes, (2014) Levels of Life. Vintage

A Really Inclusive Engine: autism and the steam train

Faster than fairies, faster than witches,
Bridges and houses, hedges and ditches,

Like many families living with autism we spent hours when Dylan was young listening to Thomas audio tapes, watching Thomas videos and reading Thomas books. Dylan had a variety of engines and Thomas paraphernalia and while he didn’t play with these he did carry the engines around with him. They also proved really useful during Dylan’s home education programme (about more of which in a future post).

Because of Dylan’s discomfort in noisy and crowded locations we didn’t often take him to public events when he was young. However, we made an exception for the Thomas the Tank Engine fun days which are a regular feature of schedules at train stations all over England. I’m not sure how much Dylan enjoyed these – I certainly found them stressful – but if there were any outing that was likely to be a success with Dylan, we told ourselves, then it was these.

And charging along like troops in a battle,
All through the meadows the horses and cattle:

Later, during family holidays, we took Dylan for rides on regular steam trains. I wasn’t sure whether these would be of any interest without the storybook engines. However, the trips were a big hit with Dylan. While the cartoon faces and colours are undoubtedly part of Thomas’ charm, at the heart of Dylan’s passion appears to be a deep love of steam.

Southern Railway, Isle of Wight, August 2009

Saltburn, Yorkshire, August 2011

Kent 2012

Bure Valley, Norfolk, April 2010

Leyburn, Yorkshire Dales, Summer 2010

Dungeness, Kent, Summer 2012

Accommodating the various interests of children within a family can be complex when living with autism. While we were a two parent family Dylan and my daughter could do separate supervised activities. As a single parent, however, this was no longer an option. It took me a while to realise that what made one of my children very happy might make the other very unhappy.

The photograph I use on this blog of Dylan and I on a tandem was taken by my daughter while we were on holiday in Norfolk in 2010. I had proposed a steam train trip which I knew Dylan would like. We were about to set off to drive to the railway when my daughter announced that she didn’t want to go. Why did we always have to go on a steam train when we went on holiday? She was fed up with steam trains. She had no interest in them. She didn’t even like steam trains. The compromise we arrived at that day was that we would hire cycles and ride on the track that ran alongside the steam train so that Dylan would have the excitement of the passing trains while my daughter had the joy of cycling.

All of the sights of the hill and the plain
Fly as thick as driving rain;

The Norfolk revelation was important because it reminded me that while I might be prepared to indulge Dylan’s passions others might not be so tolerant. At that stage steam trains were certainly something which I tolerated rather than enjoyed: Do you think that I like them? I had asked my daughter, I go on steam trains for your brother.

This was actually taken on a later trip – but it was dark like this…

I felt some sympathy with my daughter’s position when, the following year, I found myself before dawn one Saturday morning on a cold, dark platform at our local railway station. Dylan had started collecting flyers advertising steam train trips and leaving these for me on my desk. He had been very persistent with one leaflet. However many times I moved it into a drawer or onto my pile of ‘maybe papers’, Dylan would retrieve and replace it at the centre of my desk. Eventually I gave in and booked two tickets for a day trip.

The train was due to depart from our local station at 6am and return at 10pm. The destination was Scarborough, a seaside resort on the Yorkshire coast where we would have two or three hours to look around. The rest of the time would be spent on the train. On the platform that morning I eyed the groups of waiting men with their thermos flasks, goggles, manuals and gadgets and felt decidedly out of my comfort zone. Apart from a range of practical worries about how I would manage the day I was dreading having to spend such a long time doing something I wasn’t interested in.

And ever again, in the wink of an eye,
Painted stations whistle by.

The trip to Scarborough went well; in fact, I told a friend later, I’d sort of enjoyed it. As well as groups of men like the ones I’d spotted waiting on the platform, I discovered there were couples on the train. I thought that some of the women were probably there as accompanying partners but, I told myself, that was what I was (except I was accompanying a son instead of a husband). On that trip, Dylan and I were seated with a pleasant couple who inducted us into the culture of the steam train. They were friendly and supportive and gave me the confidence to look for other ways I could extend Dylan’s interests (you can read a bit more about that here).

Last year Dylan and I took another steam train, this time to Carlisle. It was a longer journey with less time at our destination but I approached the trip with more confidence. This time I’d brought the weekend newspaper, telling myself that while I didn’t share Dylan’s interest in steam trains, it was relaxing for me. I found our seats and was organising Dylan when a man charged by, knocking the coffee I was holding out of my hand and the contents all over me and other passengers. A man nearby became very upset on our behalf, complaining at the man who had barged me and wanting to find and reprimand him. However, I had seen something in the hurrying-man’s manner: Oh it’s fine, I said – I have some tissues. Don’t worry.

As the trip got underway I listened with interest to the men with whom we were seated. Four were together as a party, celebrating a birthday, and two were travelling alone. They were all extremely kind to us and good with Dylan, chatting and sharing their food. As the miles passed, the men relaxed in our presence. I don’t think I’d had an opportunity to observe men together in such a naturalistic setting before. Being alongside this group felt like a rare privilege in that it gave me an eye into the world of male friendship. I observed among this group of men (against all stereotypes) examples of emotional communication, intimacy and tenderness. I remembered the group of men I had eyed on the platform a couple of years earlier; my experience this trip, I realised, was giving me a different way of thinking.

Sitting alongside this group of men also gave me a new way of thinking about steam trains. As I listened in to their conversation I started to notice things I hadn’t previously. The tick tick ticking of the engine as it laboured up the inclines. The beauty of its carriages curling around the iconic Ribblehead viaduct. The role of water and pathway stops. The significance of the different classes of engines. The precision of the timings marked on the route maps we had been allocated. The beauty of the livery. And then (with my poet’s head) the scattering of deer and horses as we plunged through their world, the play of steam on the carriage windows and a memory of my Grandma telling me that steam engines sing alamamoosh alamamoosh.

As Dylan and I were readying ourselves to leave the train and saying our goodbyes, one of the men told me that they had moderated their behaviour a bit in my presence – they’d had a system of kicking each other under their table if they thought anyone out of line. I thanked them for that, and for the tea, biscuits and entertainment. I had, I told them, rather enjoyed the trip and been touched by their friendship.

 Here is a child who clambers and scrambles,
All by himself and gathering brambles;

 It’s not usual to comment so openly to strangers. However there is something about the steam train, perhaps, which encourages a sense of community. The idea of community felt particularly relevant on the next trip Dylan and I made. At Easter this year we travelled to Newcastle with our friends the Corbetts (who appeared in my earlier post about a weekend in London). This time the train was longer than on previous trips and as we were seated in the back carriage the sense of being steam-hauled was less powerful. We were too far from the engine to hear the ticking or to witness the dance of steam outside the window. The only clues that our trip was special were the vintage carriages we were travelling in and the speed of the train.

At one of our pathway stops we were overtaken by a diesel, on its way to Newcastle. We could have taken that service, I said, and had longer in Newcastle. But the people on that train were commuting, Julie pointed out; they were on their way to somewhere else and the train was simply a means to an end. For us, the journey was the point, not the destination. We were being hauled by the Duchess of Sutherland 46233 (the second time for Dylan and I). When we arrived at Newcastle we would leave some of our belongings on the train, unlike the commuters on the diesel service, because we would be returning to the Duchess. We weren’t concerned to get home by the quickest service but to continue our journey on the 46233. We had a shared interest and purpose. We were a community.

While I wasn’t wishing the day away I was looking forward to the journey home. Will they put the engine on this end of the train on the return journey? I’d asked one of the stewards as we left Chesterfield. I was looking forward to having more of a sense of steam, I explained. We’ll have to see how she turns at Newcastle, had been his non-committal reply. So I was delighted to find, when we gathered on the platform for the journey home, that the last carriage had become the front carriage for the return trip and that we would be directly behind the engine.

As we left Newcastle Dylan went into a trance as the white steam rubbed its back against the window pane and the ticking of the engine lulled us. I sat back with a book of poems and bag of almonds thinking life did not get much easier or pleasanter than this. But after less than an hour, just outside Durham, we came to a halt. The 75 year old Duchess, it seemed, had run out of steam. We eyed the anxious-looking stewards and listened in to requests for technical explanations from passengers with gadgets. None of these, however, were going to lessen the impact of the word ‘rescue’. A diesel had been requested, it seemed, and was on its way to us from York. We would be steam-free for the rest of the journey and stationary for at least the next hour.

We were glad that we had saved our picnic for the return journey. Being stranded on a broken steam train is not the best formula for a party which includes two autistic adults, at least one of whom has a love of steam and an inability to wait. We unpacked the picnic and I pretended to Dylan that this was a scheduled stop so the drinks didn’t spill. What I noticed was how accepting everyone was of the breakdown. No one was complaining that we weren’t continuing our journey by steam. I didn’t hear anyone moaning that we would be later than scheduled arriving home. There was none of the hoo-ha you get on a regular service when it breaks down. Just as we were a community in our outbound joy, so we were united in our disappointed return. The diesel which rescued us was, Julie observed: a really useful engine.

 Here is a tramp who stands and gazes;
And there is the green for stringing the daisies!

If I’d had the crystal ball I sometimes wish for and been forewarned that the train would break down, that we would have to wait for nearly two hours to be rescued, and that we would return by diesel instead of steam I would, of course, not have gone. However, I learned (again) that sometimes we cope with the unexpected better than we imagine. Dylan managed the wait and rather enjoyed the trip home. He was bouncing up and down on his seat as we came through Ferrybridge, which could have been because the diesel was hitting some pretty cool speeds but could equally have been due to these.

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One of Dylan’s special interests is cooling towers. We had some in Sheffield which Dylan loved but the council knocked them down and now Dylan only has photos of them. His face was a picture as we passed these in the early evening sun. He strained in his seat to watch them retreating as we passed. Here was some steam compensation, then, for our train’s lack of it. I’m not entirely sure I understand the attraction of cooling towers. I do, however, finally understand the love of steam: Alamamoosh alamamoosh I whispered to Dylan, conjuring his Great-Grandma’s engine in his ear.

 Here is a cart run away in the road,
Lumping along with man and load;

 I haven’t forgotten the man on the Carlisle train who bumped into me. It transpired he had been rushing to secure prime place at a carriage door. Standing at a train door with your head out of the window is, I later realised, an essential way of travelling for some passengers. I saw the man again on our arrival home that day, his face blackened from soot except for two pale rings where his goggles had been. What I’d glimpsed in my earlier encounter with him was his connection with Dylan and myself. Some people were on the train, I realised, to answer a need which does not always take account of social etiquette. Dylan would have bumped past someone too if he had something particular in mind. So, in fact, might I.

I’ve not embraced the steam experience enough to buy goggles and give up my seat but it’s true to say that I look forward to the trips now as much as Dylan. I doubt this is something I would ever have discovered without Dylan. I like that our trips by steam train have become a shared interest and I love that this is a result of Dylan communicating his passion to me. It makes our relationship feel more equal; we can learn from and inspire each other. Now I think of these days out as trips on the train of inclusion, the full spectrum shining quietly through the carriages.

 And here is a mill, and there is a river:
Each a glimpse and gone for ever!

Reference:

The italicised extracts are from R.L. Stevenson’s poem From a Railway Carriage. The poem is in two eight-line stanzas which I’ve split into couplets and run in sequence through my text. I’ve taken the poem from my first ever poetry book, Poems Old and New Book II: Magic Words, which was compiled by H.N. Alton and published by The Grant Educational Co. (London) Ltd in 1941. The book belonged to my mum before me (she was given it for Christmas in 1942) so there is a link back to her mother (my grandmother) who appears in this blog post. In my memory Grandma told me that trains say alamamoosh after reading Robert Louis Stevenson’s poem to me from this anthology.

A Weekend With Lions: autism and risk

Dylan, like many autistic people, likes his routines; he seems to find the pattern of attendance at his day centre reassuring and to enjoy the rhythm of his regular activities. It’s not just the autistic person who can feel comfortable with routine though – parents and carers can also fall back on tried and tested activities rather than risk something new.

My trips out with Dylan habitually involve a back-up plan in case Dylan becomes distressed or a situation becomes unsafe. In some ways this is not dissimilar from the process we might go through when supervising an activity with any young person. With Dylan, however, I have to also consider when to abandon a trip or ask for help. As a single parent I am conscious of the extra challenge this presents. I don’t have family I could call on and I would not expect friends to be on hand if I found myself in a situation where I needed support. The implications of this are that I either trust that in such a situation there will always be a generous member of the public around or I don’t put myself and Dylan in a situation where we need help. For some parents of autistic children, then, routines appear attractive in that they can reduce such risk.

 The Calculated Risk

This isn’t good enough though is it? Apart from the fact risk can never be entirely eliminated it is not healthy to live life so fearfully. I have made passing reference to the impact of fear on my caring for Dylan elsewhere (see, for example, this post). While I realise that such feelings are motivated by wanting to keep Dylan safe, I am aware that this is not something I can allow to get the better of me.  Curiosity and novelty are as much a part of learning for autistic people as for non-autistic people; if I want Dylan to reach his potential then I need to develop the confidence to support him into new situations so that he can discover things  about himself and the world.

Happily, something comes along every so often which offers just the right degree of novelty.  In summer 2011, for example, I took Dylan on a steam train trip from our home city to the coast. Although to some people this may not seem like much of a risk it required me to think through contingencies.  How would Dylan cope with a 12 hour trip away from home without a car (many families living with autism depend heavily on private vehicles to manage outings)? Would the noise of the engine bother him? What if Dylan didn’t like our seats or the carriage was over-crowded? How could I help him to understand that we were only getting off the train at our destination station for a short while? What if Dylan wouldn’t get back on? And (crucially!) how would I go to the toilet on the train given that Dylan can’t be left unsupervised?

On the day of the trip we happened to be seated at a table with a couple who, although they didn’t use the term autism in connection with their grown-up son, had an understanding of Dylan which I usually only observe in other parents of autistic children.  The trip was a success and passed pleasantly both directions with our carriage companions intuitively understanding Dylan  and even supporting him while I nipped to the loo and to buy refreshments. At some point our companions enquired if Dylan was interested in zoos.  Their son, apparently, had developed a passion for them which had taken him all over the world. This would later transform my small risk of a steam train into the scary prospect of lions.

Lions and Tigers

Chester Zoo 2011

After the trip I thought about the couple with the zoological son and decided to try an outing to a zoo (Dylan had been on family visits as a toddler but not since). I did quite a lot of preparation in advance of our first visit but with the wrong animal. My prediction had been that Dylan would like monkeys so on the run up to our first trip (to Chester Zoo) I spent a lot of time talking about them with him, waving my arms around and hooting, and borrowing monkey-themed resources from the library.  As it happened, Dylan wasn’t overly bothered about the monkeys. The lions however – well that was another matter. Our entire day at Chester  Zoo – and every zoo we have visited since – involved us circling the big cats.

Private Zoo, Kent 2012

A marvellous thing about zoos is that once you’re inside they are traffic free and safe. I’ve discovered that I can reduce the level of supervision I would normally give to Dylan so I tend to ignore the map and leave the route to Dylan to negotiate; always, and almost uncannily, he leads me to the lions. Zoos have became a passionate interest for Dylan and we have spent the last few years systematically visiting them in the way the couple on the train probably did with their son when he was younger. This has been fantastic for Dylan; it has supported his language development and his interests. As well as leaving flyers of trains on my desk for me to find, he now periodically leaves me the hint of a lion picture.  Holiday destinations in the last few years have been carefully selected to be within reach of a) a tandem cycle hire b) a steam railway and c) a zoo.

Edinburgh Zoo, March 2012

I realise this is beginning to sound more like routine than risk – and it’s true that with Dylan things that begin risky quickly become routines if they prove popular. But the way in which the lions posed an additional risk was that in due course we had visited all the zoos which I considered to be possible. This included Edinburgh Zoo which, although in a capital city in another country, had somehow seemed manageable. What we were left with, if we were going to continue, were far more challenging locations. Our tour of zoos, which had started from a chance encounter during the comfortable risk of a steam train, had led us to London.

 The Capital Risk

Edinburgh Zoo

Did I fancy taking Dylan and Ella to London Zoo? Julie asked. I had met Julie at a poetry festival the previous year. She had an autistic daughter only slightly older than Dylan and so, through our shared interest in poetry and autism, we had kept in touch. Dylan and Ella had met a couple of times and while they didn’t pay much attention to each other there had been encouraging displays  of tolerance. Ella had been to London several times previously but hadn’t been to a zoo before, so that would represent something new for her.  Dylan, by contrast, had been to lots of zoos and would be comfortable once he was inside London Zoo – for him it was negotiating the city which would be the challenge.

I lived in and around the capital in the 80s and 90s and am quite comfortable in London. While Dylan was still only a baby, however, I moved north; although we visited friends in London for a few years afterwards, after the autism diagnosis visits with Dylan stopped. There seemed to me to be no good reason to take Dylan there; he doesn’t like crowds, hates noise, isn’t interested in London’s cultural attractions and has no road or traffic sense.  In fact, Dylan likes the routine of home and to be out walking in unpopulated countryside. So while Dylan was growing up I made quick forays down to London alone while he was in respite.

Trafalgar Square

My initial reaction to Julie’s question was that it was impossible; there was no way I had the confidence to manage Dylan in London by myself. However, Julie was encouraging, reassuring me that she and her partner would be there if I needed support with Dylan and that their experience with Ella was that it was fine, providing you calculated the risks. What this involved, they explained, was doing things which were familiar such as eating at favourite restaurants and using the buses. Getting around the city was one of my key concerns; I had visions of Dylan going into meltdown in the deepest underground station and refusing to get on a train or take an escalator back up to street level. Although I knew walking routes across the city, the hubbub of the crowds and traffic didn’t make this a good option for Dylan, so not using public transport, I predicted, could create a problem.

Sometimes I can talk myself into taking a medium-sized risk by flirting with an even bigger hazard.  Noticing an advert for an Autism Friendly production of The Lion King in the West End I was seduced by the idea of turning the proposed trip into a lion-themed weekend. Shall we take Ella and Dylan to see The Lion King while we’re there? I asked Julie.

Tunnel Vision

London Zoo

So at Easter last year we travelled to London from our respective cities for the weekend.  I had no doubt that Dylan would enjoy the zoo and he did, indeed, appear to (though I suspect it wouldn’t make it into his top three zoos). What I was certain Dylan wouldn’t tolerate, however, was the theatre. Dylan had not been to the theatre before and  I was sure that he wouldn’t accept the changes which a live production would involve to a story he already knew; he has been watching the Lion King DVD every week for years and I was quite prepared for Dylan to be furious at any deviation from the film version.  I was, however, prepared to risk trying Dylan at the theatre given that it was an Autism Friendly production and I would have the support of Richard and Julie. These two factors – an inclusive production and the encouragement of friends – were absolutely key to me taking the risk

Dylan and Ella
outside the Lyceum

It was more than worth it.  Dylan, against all my predictions, stayed for the full show. It was a wonderful production (it had never occurred to me that I might enjoy it) and Dylan certainly seemed interested; it might not have been the same as his DVD, but he recognised characters and songs and paid attention to unfamiliar aspects of the show. Because The Lyceum’s production of The Lion King was the first inclusive theatre production we had attended I didn’t realise that it was the Gold Standard.  However, having recently taken Dylan to another theatre production,  I would describe The Lion King as exemplary  Autism Friendly provision. I’m glad that this was the case as it meant that Dylan’s first experience was a positive one, something which has been very enabling (I will reflect on the growth in inclusive cultural events in a later post).

The success of the theatre visit astonished me. Equally astonishing, though, was Dylan’s reaction to London itself. It turned out that he loved the crowds and traffic. He walked the streets of London like a native, leading me with delight to shops and cafés. Dylan quickly learned the route back to our hotel and settled himself as if at home. Most striking of all was his quick interest in riding the underground. All my pre-visit fears were unfounded; Dylan adored the Tube trains so much that every time we walked by the mouth of an underground station he tried to pull me in.

Dylan on the underground

The Shard

On the South Bank

Costa-on-Thames

St Paul’s Cathedral

Camden Lock Market

Once I had got over my surprise I understood why this might be. Dylan has always had a fascination for tunnels, something which I think stems from a scene in Thomas the Tank Engine where Henry won’t come out of the tunnel in case he gets his paint wet. On regular trains I had noticed that Dylan makes a particular hand signal whenever the train passes through a tunnel;  turning them palm up, Dylan cups his hands gently until we emerge into the light. If I’d have thought a little more about Dylan’s love of tunnels, I might have realised that the capital would be a huge hit with him. Imagine it: one great network of tunnels under the city with entry points wherever you walk and escalators waiting to take you up and down. It must have seemed like a giant fun fair.

Wizards and Lions

In the Wizard of Oz it is Lion who sets off down the Yellow Brick Road in search of the Emerald City to ask the wizard for some courage.  I think that out of that quartet of friends – Dorothy, Tin Man, Scarecrow and Lion – I am most like Lion. When  I watch the Judy Garland version of the film now I am struck by the fact that the actors who play the farm hands on Aunt Em’s Kansas farm are the same actors who play the characters in search of what they lack. I don’t think I noticed this as a child. Now I enjoy the way that it reinforces the idea that we actually already have the things we think we are most in need of; that our intelligence, love and courage are not qualities that exist somewhere outside of us, but are right here in our own backyard.

Acting with courage to raise a child or support an adult with autism is something that we can all do if we believe that we can; lion had courage all along, he was just sometimes a little afraid of himself. What he did need in order to realise that the courage was within him, though, was friends to help him along the way. Parents and carers of children with autism sometimes need people to support them as they  learn to take new risks. I have done a number of things with Dylan in the last year (including driving alone with him to France which you can read about here) which I doubt I would have contemplated without the weekend in London.  I’d therefore like to dedicate this post to the Corbetts for their encouragement and friendship that weekend and since.

You can catch up with Ella’s travels here: www.facebook.com/pages/Ellas-Travels/383690745077645