‘L’ is for Llangollen: a road trip with my son

I have an interest in fictional representations of autism as a reader and as a mother. Encountering fictional characters who are autistic or intellectually disabled encourages me to reflect on Dylan and the ways in which I care for him, a process I have found as useful and illuminating as reading a research report or any professional advice.  As a reader, meanwhile, I am interested in the ways in which authors can create ‘authentic’ narratives of autism.

A review of Census by American writer Jesse Ball caught my attention recently. The novel features a character with Down syndrome, rather than autism, but a couple of things drew me to it. Firstly, the novel has ‘personal authenticity’ in that Ball based the character on his own brother, Abram, who died aged 24. Secondly, as well as Down syndrome the character has an intellectual disability and, like Dylan, needs constant care.  In the introduction to his novel, Ball explains why he wanted to write the book:

people with Down syndrome are not really understood. What is in my heart when I consider [my brother] and his life is something so tremendous, so full of light, that I thought I must write a book that helps people to see what it is like to know and love a Down syndrome boy or girl. It is not like what you would expect, and it is not like it is ordinarily portrayed and explained. It is something else, different than that.

I am interested in the way that Ball claims a unique role for fiction in the representation of disability and privileged access for family members in understanding the lives of the disabled. His aim in writing Census, Ball claims, was to place his brother ‘in the middle of it’. This he has done –  although on reading the book I found myself as interested in the novel’s representation of the father as the son…

Census

It is the father in Census who is the care-giver and his response to receiving a terminal diagnosis is at the heart of the novel. With limited time to live, and his wife already dead, the father has to face difficult issues:  Who will care for his son when he is gone? How will his son cope without him? Will he be happy?  These are questions I imagine all parents of disabled adults ask themselves – I know that I do. And, as we age, the questions become more insistent and more terrible. Some days – most days I confess – I am scared to die.

Fiction is good at going to places that make us fearful and from which our instinct is to turn away, but it also has redemptive power. The ‘narrative arc’ of Census is a road trip which the father and son make from the town of A to the town of Z. The father has resigned his position as a doctor to take on the role of census taker. This involves father and son travelling through an alphabetical landscape, interviewing residents of the places through which they pass and leaving a physical mark on those they meet.  The jacket blurb claims that: Census is about the ways in which people react to the son’s condition, to the son as a person in the world. It is about discrimination and acceptance, kindness and art, education and love.

In embarking on the road trip with his son the father hopes to reassure himself about the future:  This father believes that the good is possible. It must be possible.  Could I be as brave and optimistic and hopeful and philosophic in the face of death, as this man I asked myself?

The Magical Town of Llangollen

I struggled with the novel initially. I didn’t really get the tattooing of people they interviewed for the census.  I felt lost in time and space. Where was I?  America?  Some dystopian future? I almost put the book in the ‘recycle’ pile.  But it so happened that as I approached L (the chapters are alphabetical, following the journey taken by father and son) Dylan and I were due to go to Llangollen for Easter. Perhaps I should take the book with me and compare the reactions to father and son in the fictional town of L with the experiences of a mother and son in Llangollen?

 

Dylan and I have spent time in Wales previously but never in the Welsh border lands. I was drawn to it having seen footage of the canal aqueduct at Pontcysyllte on Countryfile. That looked like something Dylan might enjoy, I thought to myself. When I researched the area I discovered that not only was there a canal and aqueduct at Llangollen but a waterfall, beautiful river (the Dee), chain bridge, castle, viaduct, church, abbey and (how much better can it get?) steam train. This promised to be Dylan wonderland – and just as I thought it couldn’t get any better, when I searched for accommodation I found a Station Master’s cottage at Berwyn, one stop up the line from Llangollen, situated by the chain bridge with a view of the Dee and passing trains.

The real town of ‘L’ lived up to its magical promises. The cottage came with complimentary passes for the steam train which we used daily to travel up and down the line, walking stretches of the Dee Valley Way and visiting sites of interest, beauty spots and pubs. Highlights of the week for me were a trip to Plas Newyd (home of Eleanor Butler and Sarah Ponsonby, the ‘Ladies of Llangollen’) and hikes up Velvet Hill and to Castel Dinas Bran. For Dylan, I think, it was rides on the steam train and the experience of living in a cottage with a window seat view of the river and passing trains. He also thoroughly enjoyed our boat trips, picnics, canal walks and pub visits 🙂

 

 

And the people of ‘L’?  How did they react to the son’s condition, to the son as a person in the world?  With acceptance, kindness and love, as I so often find when I travel with Dylan.  The station volunteers returned his firm handshakes. Passing engine drivers waved to him each day. In cafes, pubs and shops, assistants listened carefully as Dylan had a go at ordering for himself.  He was helped into his preferred seat on canal boats and buses. When the heating broke down in the cottage it was quickly fixed so that Dylan could have his bath.  People could not have been kinder.

But it is easy to be kind when someone is happy and calm – the real test is when Dylan becomes anxious or frustrated. On our last day in Llangollen, there was a ‘Thomas’ event.  I was a bit nervous about it, thinking Dylan would not like the crowds and disruption to ‘his’ steam train. Sure enough, when we took the train one stop to Llangollen from Berwyn that morning Dylan flung himself full-stretch on the platform at sight of Thomas. Onlookers were shocked but not troubled or unkind: intuitively, they made space for Dylan to recover himself…

The Fictional Town of L

Census paints a rather different portrait of the fictional town of L. Their arrival in L represents a low point for the census takers:

As my son and I drove down the long slope putting K well behind us, I could see through the fogged glass of the window a long valley presented ahead and on either side.  The remainder  of our trip would be made in a sort of industrial hell interspersed with bands of what might be called wilderness, but what were, in essence, abandoned tracts, towns not thought worth exploiting, and the lands around them.

My condition pressed upon me as we went, and I felt again that we should stop, perhaps that we should even stop for some days, but the first motel we came to was filthy, and  though we bought a room, my soon would not enter it, and we ended sleeping in the car.

                                Will you please go in? Please?

                                He would not go in, not for anything.

The motel was the Leapley Motor Inn, and I confess that I did not want to sleep in the room either.

The next morning, we went to an apartment complex and knocked on the first door we came to.

My son and I had argued about whether people would be different here. Or rather, we both agreed they would be, but he thought they would be nothing like the ones before. I disagreed… (p. 164)

The father and son are increasingly isolated in L, spending time alone and sleeping in their car. The father is troubled by dreams of humiliation, torture and abuse.  He is dizzy and breathless.  At nights, he imagines the car is a coffin. Bleak as L is, however,  it is not terminal: the promise of M (and N and O and P…) still lie ahead for father and son:

There was nothing for it but to continue to Z. And at the same time, as my condition worsened, I felt sure that I would not make it to Z. What then? When there is nothing to do, you do what little there is – what little is left.  (p. 172)

Through the Triangle Window

The father and son do make it to Z. They arrived (by which I mean ‘I finished the novel’) on the last day of our holiday in Llangollen. My road trip with Dylan had provided the space I needed in order to understand and appreciate this very special book. A cover review declares:  ‘I defy anyone not to read its final pages through tears’. Dylan gets upset when people cry so I was glad for the secrecy of my attic room with its triangular window. My experience of the narrative became so powerful that I cannot separate this image from the father putting his son on a train in Z:

After many days, after an almost impossible distance, the train will stop at a little station near nothing. It will have to travel that far – until is almost near nothing. The train will halt,  grinding its metal brakes. The conductor will look around. The conductor will find my son in the seat he has chosen, a window seat from which he will be looking out. My son will be used by then to the traveling. He will have become fond of the train. The conductor will help him up, will get this bag. They will go together to the exit. During the trip, a trip that will last months, maybe even years, the conductor will have become fond of my son… My son will step onto the platform and stand there. He will stand there. The train will pull away.  (p. 240)

The Llangollen trains through my triangle window made the son’s metaphorical train ride heartbreakingly real. What they also made real, however, were the blessings received by the father during the journey they had taken together. Here he is in ‘J’ reflecting on he and his wife’s feelings about their son:

We felt lucky to have had him, and lucky to become the ones who were continually with him, caring for him. I have read some books of philosophy in which the freedom of burdens is explained, that somehow we are all seeking some appropriate burden. Until we find it, we are horribly shackled, can in fact scarcely live.  (p. 153)

Our trip to Llangollen ended with me feeling grateful for the fortune which had bestowed the ‘freedom of a burden’ through which I have learned to live (if not to die).

Note:

Census by Jesse Ball is published by Granta (2018).

 

Silver Linings

It’s a while since I posted an update about Dylan. I’m not sure why: life has continued its twists and turns, with plenty to reflect on as ever. I’d like to say that my silence here has been because I’ve been writing poems but I’m not sure that’s true. Work more likely 😦

Well, I’ve made a bit of space today for a quick post about  silver linings. As I type that I call to mind a favourite song which Dylan and I often listen to while driving so let’s have a burst of that first…

Silver Lining Number One

I often say that what matters is not the error but the fix.  When my students complete evaluation forms at the end of semester it frustrates me when they complain about a problem I thought I’d responded to during the module.  ‘Please don’t focus on the things that went wrong’, I want to say to them before they fill in the form: ‘think about what I did to make it better’.

Something went a bit wrong at Christmas when Dylan didn’t have a Christmas card or present to give to me. I had assumed Dylan would bring something home with him as this is what has happened every year since he moved to residential care.  I will never forget the impact of this the first Christmas; Dylan’s gift and card were completely unexpected and moved me to tears.  Before that, I had never received a present from Dylan that  I hadn’t chosen and bought myself.  The soaps and candles Dylan gave to me that year were the sweetest indicator of my son’s growing independence. Since then, Dylan has brought gifts for me every Christmas, birthday and Mother’s Day without fail.

So  I was puzzled that Dylan didn’t have even a card for me and sister this year. Dylan seemed conscious of his lack of something to give on Christmas morning; we have built a routine in the last three years for the exchange of gifts and something in Dylan’s body language made me imagine him anxious or sorry (though this could have been projection). I took the label off a Christmas hamper meant for my father and gave it to Dylan to give to me instead.

Afterwards, I wasn’t sure whether to say anything to staff at Dylan’s residential home or not. I felt a bit of a Diva complaining that I hadn’t had a Christmas present.  In the end I did, however;  the exchange of gifts with family and friends is important social learning which Dylan needs support with.  And I was glad that I did mention it as it turned out to be simply one of those things that had slipped through the net. They thanked me and assured me it wouldn’t happen again.

As I have observed, what matters is not the error but the fix.  After Christmas, parents were asked to send the birthday dates of family members for the diary. And here is Dylan delightedly clutching the gift he made for my February birthday. The new social enterprise coordinator, J,  is now supporting  residents to make their own presents. It’s a small thing, but a silver lining to a parent.

Silver Lining Number Two

As I’ve noted before, When Dylan is very upset he destroys the things he loves most. These incidents  – in which Dylan can become consumed with despair – arise, I assume, from our  failure to understand what he is trying to communicate. Dylan has, in the past, shredded cherished photographs, leaflets, Filofaxes, schedules, clothes,  books and DVDs.  Afterwards, when Dylan has calmed, he faces the additional distress of no longer having the comfort of objects which meant a great deal to him.

Over the years, there has been a lot of ‘re-buying’ of pajamas, books and DVDs. The ripping of PJs, in particular, has proved quite challenging.  Dylan is a man of taste;  his preference is for classic trouser and jackets, usually in good quality (but nonetheless rip-able) fabrics. At the end of last summer we decided to call a halt to the expensive replacement of PJs by keeping Dylan’s clothes drawers locked. He does still rip PJs from time to time but he no longer has free access to them for ripping sprees overnight.

When we moved to locking Dylan’s drawers I felt sad. It seemed to me a regressive step and a reduction in Dylan’s independence. Each time we have decided not to replace something Dylan has destroyed – a photograph album, a Filofax – I have felt the erosion of his independence and dignity in the loss of the object itself.  So it was with a heavy heart, following a particularly distressing incident recently, that I suggested the time had perhaps come to lock Dylan’s DVDs away.

There was something about restricting Dylan’s access to his DVDs which I found difficult.  He has his favourite films on his ipad (which Dylan has not so far attempted to break) but the DVDs serve a deep need which Dylan has for physical artefacts. He likes to look at the covers, open the cases, hold the discs in his hands – the pre-play rituals which Dylan associates with his DVDs can last for anything up to 30 minutes. Because of this way Dylan has of organising and handling his DVDs, I had never seriously considered limiting his access to them.

Once I’d accepted that a lockable cupboard was the only way forward, however, I decided I may as well commit to the project and take the opportunity to re-organise Dylan’s room.  The residential home donated a heavy duty, clear-view cabinet where Dylan could keep his DVDs. I took leave from work and spent a day shifting, scrubbing, polishing and sweeping.  Relocating Dylan’s (somewhat depleted) collection provided an alternative  space for Dylan’s books, allowing surplus shelves to be moved out of his room, creating a sense of light and space. This, I said to a member of staff who came to see how I was getting on, might be the silver lining.

Based on my experience of making changes at home I had decided it was probably best for me to re-organise things while Dylan was out.  If he could see my completed ‘suggestion’ he might accept the change but would almost certainly resist any moving of furniture if I tried to involve him in the process.  I wasn’t sure how Dylan would react to the re-organisation but was in no doubt that he would let me know if he didn’t approve. So I was a little nervous when I heard Dylan bounding up the stairs, returning early from his swimming trip. I hadn’t quite finished. I pushed a pile of rubbish out of sight, straightened his duvet, lined up his remote vehicles, sat Buzz and Woody on his newly-positioned chest. They can see the TV from there, I said to Dylan. You can sit here, look. And see: here are your DVDs.

Dylan’s eyes darted quickly around, taking everything in.  Then he smiled his silver lining smile…

Three Years and Three Months: A Mother Adjusting

There is increasing pressure to evaluate things immediately. Have your students secured employment within six months of graduating? Did you enjoy this evening’s production? How would you rate your learning on this module?  I tell my students that some of the things they are experiencing will make different sense to them in the future. I’m not saying an instant impression is worthless but I always regret that we don’t revisit our evaluations months (or even years) later.

And so it is the case when supporting a disabled adult to leave home.  Although it is over three years since Dylan moved to residential care, I am struck by the extent to which transition is an on-going process and one that I am definitely still evaluating and adjusting to.

Exhaustion

When Dylan first moved to residential care I set myself the challenge, during the first 100 days, of recording my feelings about the process. That created a rich picture of the minutiae of adjusting to Dylan’s move: my daily blog posts were full of laundry, food and bedtime routines.  What I was too up-close to see at the time, however, was how exhausted I was.

Now I remember sometimes having to stop the car on the drive home from visiting Dylan, too tired to continue safely. There was a particular lay-by where I would sit, windows down, chanting half-remembered poems and songs to wake myself up. When I wasn’t visiting Dylan after work in those early weeks, I would be asleep on the sofa by 7pm. Perhaps my sleepiness was a mechanism for dealing with the emotion of the situation but I think I was also chronically tired after years of caring.

On the run-up to Dylan’s move to residential care I promised myself I would enjoy doing all the things I hadn’t been able to as a carer. I assumed I would be out and about, taking advantage of my sudden freedom to do as I pleased. What a mistake that turned out to be. Only very recently, more than three years after Dylan left home, have I found myself with a little more energy. I have started going out after work more often and staying up slightly later in the evenings.  I am amazed how long it has taken me to feel able to do this.

Involvement

Since Dylan moved to  residential  care I have phoned the home almost every evening.  This is not something I’ve enjoyed doing (I’ve written about that here).  An attempt to use Facetime with Dylan hadn’t worked, however, so a  telephone conversation with staff was my only option and my need for reassurance about Dylan was enough for me to overcome my dislike of using the phone.

The calls have been a hit and miss affair. Sometimes I was able to speak to someone who had been working with Dylan that day but more often the member of staff had to look for information about Dylan ‘on the system’ .  My experience has ranged from feeling reassured after a friendly chat to being upset  by staff abruptness. Evening  telephone calls from parents, I quickly realised, were not usual; even having established that nine o’clock was the best time to call, I knew my calls could be an irritation, particularly if staff were busy. They  were important to me, however; this was my son and I wanted to create a space in my day to connect with him.

Although the calls could be frustrating they helped me to feel involved in Dylan’s life. This summer, however, I had to re-think my routine. In June I heard that I had won a Northern Writers Award which involved funding to be used to complete the book of poems I am working on. I needed to spend some time away from home, free of distractions, in order to get on with the project. At the artists’ colony where it was suggested I go for a week, however, I would have only limited and intermittent contact with the outside world.

What was I to do? I knew I couldn’t turn down the opportunity because of a routine which was (I  knew in my heart of hearts) beyond its use-by date.  As Dylan was not aware of my daily calls, he would not know I wasn’t calling the setting each day; the only impact would be on me.  What was the point of me knowing whether or not Dylan was settled for the night? I couldn’t do anything about it. Staff would contact me in an emergency.  There was no guarantee that Dylan wouldn’t get ill or have an accident while I was away, but it would be very unlucky. I knew I had to go.

So as not to spend my week away worrying about being out of contact with Dylan, I practiced for it the week before I left:  I didn’t make any telephone calls in the evening or send any emails, other than responding to a request for information. The trial week helped me to break my evening routine and I coped perfectly well, while I was away, without a mobile network or internet connection.  In fact I did more than ‘cope’; I had a productive time and returned with the confidence to go away again.  Furthermore, I seem to have broken my habit; I haven’t made any evening phone calls since.

I report this because I am struck by how individual a process transition is for parents.  I have no doubt there are a range of parental responses to a disabled adult child moving into residential care. Probably there are some parents who never make an evening phone call, some who call occasionally and some who make regular calls for a limited time.  Perhaps some  parents telephone every day for the rest of their lives, but I suspect this is rare. I’m prepared to accept my own extended transition period might have been a bit of an outlying spike in the pattern of parent behaviour,  but everyone has to find their own way.  I am very grateful that staff at Dylan’s care home allowed me to take the time I needed and that no one ever suggested to me that I didn’t call.

Although this is progress there is a downside as well.  Since I’ve stopped making daily phone calls I don’t feel as involved in Dylan’s life as I did. Some evenings, to feel closer,  I bring Dylan to mind and sit with gentle thoughts of him. I suppose this is not dissimilar to my meditations on other people I love who have moved away. In this respect it is, I suppose, a natural letting go.

Letting Go

There has been another ‘letting go’ recently; since the summer I have accepted a more relaxed approach to the dietary routines which have previously been an important part of Dylan’s care. This was triggered by our holiday on the Isle of Man where  it was difficult, some days, to find a vegetarian option which Dylan wanted to eat. Two or three times during the week I let Dylan have a non-vegetarian option rather than ask him to wait until we found something else or were back at the cottage. This made eating in the community easier for Dylan and less stressful for me.

Although I never experienced Dylan’s vegetarian diet as a ‘problem’ while he lived at home, it has proved one of  the most challenging aspects of his move to residential care. Dylan has a limited diet (only things which are beige and bland to taste and smell) but he eats with huge enjoyment (I have written about Dylan’s favourite foods here).  When Dylan moved to residential care, something which was very important to me was that he should continue to eat familiar food which could comfort and support his transition. The psychological benefits of such foods are well-documented in relation to communities in exile and more generally.

My ‘100 day’ posts often focused on food and my frustration at the constant need to justify Dylan’s vegetarianism. At the height of the silliness, it was suggested that this might have to go to a ‘Best Interests’ panel for discussion as it could be considered a deprivation of Dylan’s liberty to eat meat. I asked whether Dylan’s diet would be similarly challenged if he were a vegetarian on religious grounds? When I claimed ‘cultural practice’ , however, I was asked to explain in what respect Dylan’s vegetarianism could be classed as ‘cultural’.

The constant  challenges and explanations were wearing.  Although the issue didn’t go to a Best Interest panel, in the event, Dylan’s vegetarian diet has been the focus of constant discussion at periodic reviews and  whenever there was an ‘incident’ involving food. Many of the ‘incidents’ in relation to food turned out to be triggered by Dylan being offered unfamiliar vegetarian foods.  So while he may love ‘vegetarian Kiev’, this is a particular brand of Kiev (quorn, entirely beige) not any old Kiev  – and especially not a Kiev made from aduki beans (wrong colour, texture and flavour).  So when Dylan rejected an aduki bean Kiev one night (and grabbed a chicken Kiev  being eaten by another resident) it did not mean that he does not enjoy his vegetarian diet.

Well, I am rehearsing old arguments here.  Although I found the issue of food the most exhausting and frustrating aspect of Dylan’s move to residential care, things did settle down eventually and fewer questions have been asked, recently.  In this context, my relaxation of Dylan’s dietary rules this summer could seem odd.  I am sure it surprised staff when I announced, at Dylan’s recent review, that I was happy for him to have a non-vegetarian option while he was out in the community if he preferred it to the vegetarian option.  Having realised, while we were away,  that this can be a sensible option, it seemed only right to apply the same principle to Dylan’s everyday life.

How do I make sense of this change of heart?  Mostly, like the relaxation of my daily telephone calls, as part of the process of adjustment to a child moving into residential care.  I think this is particularly relevant in the context of someone who lacks capacity. If Dylan cannot make informed decisions about issues such as diet, who should do so on his behalf?  Parents are used to taking such decisions and, I would argue, continue to be best-placed to inform decision-making during transition.  But over time (three years and three months, perhaps) it is probably right that a parent starts to step back and relax into a partnership approach.  In this spirit,  I have decided to trust staff to offer Dylan a vegetarian diet at the home but to have flexibility, if they need it, when out and about.

Is there any loss involved in this, as with the reduced telephone contact?  I think so, yes. As I noted above, the food we eat reminds us of home; it connects us to our family and community and creates a sense of belonging and identity.  Whatever a health care professional may say, I claim diet as ‘cultural practice’.  In this respect, even a slight shift in Dylan’s separates him from home a little. But this is probably no more than the adjustments my daughter might make to her diet as she learns to live away from home. So perhaps it is a sign that, like his sister, Dylan has flown…

 

Images:

The photograph of the porthole window is the view through the shipping container I stayed in during my residence at Cove Park. The photo of the rainbow over Loch Long  (featured image) was taken from my writing desk at the end of my week away. The other photographs were taken on outings and home visits during the last few weeks.

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 🙂

 

Residential Snow

When Dylan first moved to residential care one of the things that made me anxious was the idea of not being there for him if he became upset or was ill. The setting isn’t far from where I live, relatively speaking, but the quickest cross-country route from home takes 50 minutes; as it’s all but impossible by public transport I worry about being unable to drive.

As I’m not a particularly confident driver my anxieties about not being able to get to Dylan are compounded by bad weather.  I know emergencies are rare and that the chances of Dylan having an accident don’t increase when it is snowing  (well, perhaps a smidge).  I also accept that there is no need for me to drive to the home in response to minor incidents; familiar staff are there to support Dylan at such times. So it ought to be possible not to worry about the weather, even when conditions are arctic. This is not, however, necessarily the case.

Routine Emergency

One of the most important things to Dylan is his visual programme. He has various routines around this, one of which is that he likes his week  to end on the day he comes home.  Dylan really enjoys looking through his ‘new programme’ with me while he is visiting. For this to work, however, we need to agree Dylan’s weekly programme two or three days before he comes home for the weekend. What this means is that some of his activities are planned as much as ten days before they are to happen.  The weather  forecast is not something that can be reliably factored into planning.

At the height of last week’s snowfall, all planned activities at Dylan’s residential setting had to be cancelled as it was no longer safe to transport residents by car. This meant that a programme change had to be communicated –  not easy for Dylan, but he accepted it well and was happy to spend time in the snow instead.  The possibility that Dylan might not make it home at the weekend, however, worried me; this was not a disruption to routine that Dylan would so easily accept.

Essential Work

As well as feeling anxious about getting myself to Dylan’s home I worried about whether the care home staff could get to work. I know this is not my responsibility but because staffing is essential in a setting such as Dylan’s I still thought about it. The residents are bound to be unsettled by the change in routine and the inability to make trips out means they have to spend more time in the home together than usual. This is potentially a tricky situation and the best resource is plenty of staff.

I need not have worried of course; the managers had everything under control and the staff did what essential workers do and made it through the snow to the home.  When I asked how they had managed on the worst of the snow days, one member of staff told me that those who had got through ‘stayed on’, doing double shifts and sleeping over.  So while I spent most of the week working from home, work at Dylan’s home continued as normal.

No Snow Drama

This triggered two reflections. Firstly, that when we refer to ‘essential workers’ at times of extreme weather or public holiday we rarely think about the thousands of staff who work in residential settings supporting  the most vulnerable members of society.  Because the focus in such settings is about keeping residents calm and comfortable by maintaining routine and structure,  snow and ice doesn’t generate dramatic footage for the national news. Workers driving emergency response vehicles, Chinook helicopters and roadside recovery trucks may appear more heroic, but my heroes last week were the staff who took care of Dylan without turning the weather into a drama.

The second thing was a memory of when Dylan was living at home. The experience is still recent enough for me to remember how challenging it was to keep Dylan calm and happy during extreme weather. The disruption to Dylan’s routine if his school or day centre was closed, and the difficulty of being confined to a relatively small space,  without access to the therapeutic resources and spaces he needs, would often trigger anxiety and frustration. Recalling this, I was glad that Dylan was not only safe, but in the best possible place.

Weekend Work

There have been wintry weekends while Dylan has lived at his residential home but they have never prevented me from collecting Dylan for a home visit. With England in the grip of extreme weather, however, the situation was different. By the end of the week I had accepted that I could not get to Dylan and that he was safest staying where he was. The snow was so heavy that rather than fret about how Dylan would respond I settled into the idea;  there was nothing could be done and it would probably be good for me to have a break from caring for Dylan.

In the event, however, one of the support workers (a more confident driver than me) brought Dylan to me and collected him the next day. Although this was not quite the routine Dylan was used to it meant he had some time at home as well as relieving pressure on staff at the residential home. Dylan and I enjoyed our time together but I was a bit anxious about not being able to take him out for an activity as I usually do. This made me realise that Dylan and I have constructed a weekend routine which isn’t sustainable; there will be other times when the weather closes in and (in due course) age and ill-health to prevent me from looking after Dylan. I need to prepare us both for this somehow. I think an unsnowy break from our weekend routine may be on the horizon…

Dylan enjoying himself in the residential snow…

Finding Plato (or ‘getting back to work after having been a long-term carer’)

While organising child care is challenging for all working parents it can be particularly difficult for parents of disabled children as care needs often extend into adolescence and increase in complexity as the child gets older. This is frequently the case for autistic children with intellectual disability and for those children and adolescents whose behaviour may be considered challenging.

When Dylan was living at home I wrote several blog posts reflecting on the difficulties of managing the demands of a full-time job alongside my role as carer. While my employer was accommodating about certain aspects of my work, there were some employment practices about which nothing could be done; participation in evening research seminars, conferences away from home and professional development activities such as external examining were simply not possible.

As a single parent, I had to make sacrifices in the workplace in order to care for Dylan. I don’t regret these for a moment. I don’t recall ever having met a parent who has regretted the impact on their working life of caring for children. In fact I have probably read more accounts of parents who feel grateful that their caring responsibilities enabled them to re-think their relationship with the workplace and their career aspirations.

Obstacles

Academics often come into the sector on the back of their early experience of research, perhaps direct from their own PhD study or having worked on a research project. In this respect, I was a typical  early career academic when I took up my first appointment as a university lecturer in 1991. For the first six or seven years of my career I maintained a research-oriented focus to my work, contributing to articles and books while developing my experience of teaching and administration. From soon after 1996 however (the year Dylan was diagnosed autistic) my research articles started to decline and gaps began to emerge in my publications record.

Although there was still a trickle of papers through the 90s, these tended to be shorter and opportunistic. Then in 2004 (the year my ex-husband and I divorced) the publications come to an abrupt halt. From this point on the focus of my work would shift; I switched from research to undergraduate teaching (as this was easier to fit into the school day) and in order to manage financially I pursued promotions in leadership. While these roles took me further away from the research work I had wanted to do, it was a pragmatic strategy and I was glad I had the option.

One thing I have discovered about caring for someone with a disability is that fresh challenges emerge across the life course. Such spikes in the rhythm of family life can make the demands of the workplace feel overwhelming from time to time. When Dylan transitioned from school to adult services the lack of appropriate provision for his complex needs meant we hit crisis. The pressures were so great that, despite having managed as a lone working parent of a disabled child for years, it no longer felt possible. My responsibilities at home were overwhelming and had to take priority. I decided that I needed to reduce my working commitments. I had already given up research; now I gave up my leadership role as well.

Finding Plato

While there were downsides to this decision (the reduction in salary, for example) I was surprised to find that within a short period of time I was enjoying my work more than I had for years. As I no longer received remission from teaching for leadership responsibilities, and couldn’t claim any for research,  I had the heaviest teaching load of my career. I was physically exhausted but I found the teaching energising; suddenly I had the mental energy needed to advocate for Dylan and  renewed confidence in my ability to support him.

In the event, Dylan wasn’t offered an appropriate placement for another two years. The fact I was enjoying my teaching, however, meant that rather than feeling like a drain on my resources, work helped me to cope. Returning to teaching had allowed me to reconnect with my reasons for wanting to work in higher education and therefore with my sense of self.  In order to act as an effective advocate, it seems to me, such self-care and attention to our own needs and identity is essential. Setting up this blog became part of that process of re-connection and renewal.

Sometime in 2016, after Dylan had been allocated a residential placement, I was reading The Republic for a philosophy of education module I was teaching. I was struck by Plato’s suggestion that Guardians (the educated class of Athens) should give themselves to public service during the ages of 35-50 but then withdraw from  leadership in order to resume a focus on scholarship and private study. In the aftermath of Dylan leaving home I had been struggling to find a sense of purpose and to accept my new identity as an ex-carer.  The idea appealed; here was a self-justifying framework I could live with.

Opportunities

The problem was, it had been such a long time since I’d done any research I wasn’t sure how to go about it.  I hadn’t kept up with developments in fields I had previously researched and, in any case, had lost interest in them.  I no longer had a track record so there was no chance of being awarded funding to set up a research project in something new.  By now close to retirement, I was ineligible for the development initiatives which offered support to new researchers. Just how was I supposed to jump start my stalled academic career? Is this what happens to those with long-term caring responsibilities, I wondered? That by the time we are ready to resume a career it is too late?

I like to think that over the years I have turned my experience of supporting my severely disabled son from what could have felt like an obstacle into an opportunity. In relation to career, however, this had been a struggle. I was glad to feel re-engaged with teaching and not sorry to have given up my leadership responsibilities. I had worked hard to re-position myself in the workplace and not to care that the research route appeared to be blocked. Finding Plato, however, had stirred something in me.

I wish there was still some research I could do, I said to a colleague one day.  I explained how impossible it felt to return to research, more than a decade after I’d stepped back to focus on other things.

But you’ve so much to write about, she replied.  You have enough material in your blog for several papers.

Tied to the Worldly Work of Writing

My colleague knew what she was talking about as she had recently published an article drawing partly on a blog in which she documented her experience of caring for her elderly father. I had supported my colleague to set up her blog, based on my experience of keeping Living with Autism; now my colleague supported me to think about my blog as a resource for scholarship and enquiry. As well as listening while I tried out ideas, she suggested readings and scheduled writing days during which we worked alongside each other developing plans. The process was time-consuming; we spent over a year discussing ideas for a paper. The final outcome of this process was not what I’d anticipated; instead of a joint paper based on both blogs, the article which emerged focuses on parents of children with intellectual disability:

The premise of the paper is that parents and carers of autistic children acquire skills similar to those used in ‘ethnographic research’, a method based on participant observation in which a researcher immerses herself in the life world of another.  Parents of disabled children, I argue, need to adopt such an approach to parenting if they are to understand the world through their child’s eyes. This is particularly important, I suggest, when supporting a non-verbal child or adult with intellectual disability.  Based on this, I claim ‘ethnographic parenting’ of disabled children as a useful epistemology or ‘way of knowing’. Online blogs kept by parents of autistic children, I argue, represent valuable ‘single stories’ which enable us to build our understanding of children and adults whose voice would not otherwise be heard.

Writing the paper turned out to be an immensely satisfying process, enabling me to draw together the threads of years of parenting and academic work. As well as encouraging me to think deeply and carefully about the role of parents in advocating for children and adults with intellectual disability, writing the paper allowed me to acknowledge the intersectionality of my own working and family life. I know that I would not have embarked on this project without the encouragement of my colleague and I cannot stress the importance of her support enough. The experience leads me to suggest that we should do more to enable long term carers to resume their work and careers.