“It’s a Blue ‘Un”: cars, colours and autism

Blue ‘Un

My father, from a coalmining family in Northumberland, tells a story of the first person in his village to acquire a motor car. It would have been the early 1950s, before Dad moved south. In answer to the question ‘what sort of car is it, mother?’ my Grandmother had apparently replied ‘it’s a blue ‘un’.

When I was young I was amused by the story but later, when I realised the joke was on women, I stopped enjoying it. Then I would reprimand Dad for the sexism inherent in his anecdote. And besides, I told him, didn’t my Grandmother have more important things to think about than the make and model of a car? Could any of the seven men in the family have named the brand of blacking she used on the hearth or the soap she scrubbed their pit clothes with?

Grey One

My father’s move to South Yorkshire was part of his commitment to self-improvement.  He took  an apprenticeship to become a colliery electrician and enrolled in night school. He met my mother and by the end of the decade had managed to save enough money for a deposit on their first home.

The arrival of three children in seven years meant Dad had to upgrade his motorcycle with a sidecar to a car. It was a Ford Anglia (registration plate 243 PAU).  My father’s commitment to social mobility included the requirement that we speak in standard English rather than the local dialect;  if anyone had asked me what colour the Anglia was I would have replied  ‘a grey one’

 Green ‘Un

On Saturdays the local newspaper, the Sheffield Star, produced a separate publication devoted to sport. It was called ‘The Green ‘Un’, a reference to the colour of the paper it was printed on.  In a soccer-mad city, with loyalties divided between two clubs (Sheffield Wednesday and Sheffield United) The Green ‘Un was popular and widely read.

My father had no interest in football but my mother was a lifelong Sheffield Wednesday fan.  One Saturday evening I was judged old enough to go alone to the corner shop and was asked to ‘go and get a Green ‘Un’.  I remember the laughter of the newsagent and customers as I held out my money and asked for ‘a copy of the Green One please.’

 Blue ‘Un

The car I have driven for the last nine years is an ex-Motability car which I bought just out of warranty with very low mileage. After a string of breakdowns in my previous car I had decided I needed something more reliable to keep myself and Dylan safe. It is never comfortable to be stranded at the side of a motorway or remote road, particularly as a single woman, but to breakdown while responsible for an autistic adult who lacks capacity and has limited communication is very stressful.

Dylan does not understand any sort of delay or wait. Being stopped at a red light is sometimes frustrating for him so waiting hours at the side of road for assistance (assuming we can get a mobile signal and request help) is a nightmare scenario. As Dylan doesn’t easily take instruction and lacks road awareness, leaving a broken vehicle to get help is not an option. For these reasons I decided that I could not compromise on vehicle safety.

On advice I bought a Skoda Fabia – not a car I would have considered normally but I was assured it would be reliable because Volkswagen (who own Skoda) make the engines. I asked a local dealer to find me one. ‘I don’t care about the colour’ I told him. When he telephoned with one I might be interested in he said:  ‘It’s a blue ‘un. Is that OK?’

 Good One

The advice I received was sound. The only time I ever needed to call breakdown for the Fabia was during a visit to Spurn Point when a  grinding noise from the front nearside convinced me I had a wheel bearing problem. It turned out I’d picked up pebbles from the shingly land; all that was needed to dislodge them was to reverse, hard and fast. Not a mechanical failure then…

But last May, when I got the car tested, the mechanic told me my gearbox ‘might be going’.  For the next 4000 miles I listened as my Fabia became grumblier. Finally, in September, I decided that after nine good years it was time to exchange rather than repair. Dylan was so comfortable with the Fabia, and it had been so reliable, I reasoned it was probably a good idea to get an identical make and model. ‘I don’t care about the colour’, I told the car dealer.

Grey One

Back seat of the bus

Before the car dealer could find me a replacement, my blue Fabia took a turn for the worse. I decided I could no longer risk Dylan in the car so for the last seven weeks have been managing without a vehicle. This has been tricky as Dylan’s care home isn’t reachable by public transport. Staff have driven Dylan to me some weekends and I’ve planned local activities on foot and by bus for his visit. When this hasn’t been feasible, Dylan and I have had the ‘weekend off’. A couple of times, however, I’ve hired a car…

The first time I was allocated a Vauxhall Corsa. I’d asked for a car as close to a Fabia as possible, in terms of size and style, and was reasonably confident the Corsa would be  acceptable to Dylan. My main worry was that it didn’t have a CD player. ‘I’m sorry Dylan’, I said when I picked him up. ‘We’re in a different car this weekend and there are no CDs.’  I felt Dylan hesitate. He scanned the car park from left (the side I usually park) to right and left again. Before I had chance to point out the Corsa, Dylan strode confidently across the car park. His quick sweep of the vehicles had given him all the information he required. Curious to know where Dylan was heading, I followed behind.

With barely a glance Dylan passed a line of cars and stopped by a large saloon. He gestured to me to open the boot so he could put his overnight bag in. The car bore no resemblance to the Fabia or to any other car Dylan had been a passenger in. Why had he decided on this one I wondered? ‘Not this car Dylan’, I said. ‘Ours is the grey one over there’.

Colour Sense

When we were settled in the Corsa I realised why Dylan had picked the car he had; it was a ‘blue ‘un’. Perhaps, like his great grandmother, the distinguishing feature of a car for Dylan is not the make or model but what colour it is. I know people who assign colours to  words, numbers, feelings and thoughts  – why should I be surprised if Dylan categorises familiar objects and processes by colour?

I ran through the colours of all the cars I have owned, chanting their names like pearls…

Silver Renault 4; Yellow Renault 4; Red Citroen Dyane; Green Renault 5; White Renault 4; Sky Blue Beetle; Turquoise Blue Renault 5;  Blue Morris TravellerWhite Fiat Punto;   Blue Renault Scenic; Blue Skoda Fabia.

All but one of the cars in Dylan’s lifetime, I realised, has been blue. Is it such a surprise that he should live by the law that ‘Mummy drives blue cars’ ?

 Blue ‘Un

Joke picnic

When Dylan was young I tried to teach him to learn his colours through Thomas the Tank Engine. I’m not sure that  Edward and Henry helped Dylan to identify ‘red’ and ‘green’ but his favourite engines may well have informed his colour preferences. When I ask Dylan to choose the colour of things such as t-shirts and slush puppies what he could be expressing when he chooses blue (as he tends to) is love of Thomas. Perhaps Dylan simply prefers Thomas-coloured cars? 

So, the next time I hired a car for the weekend I asked if they had a blue one available. The customer services assistant seemed exasperated by my requests (could you also put the child locks on for me please and could you please tell me whether it has a CD player). The colleague she passed me to was gentler and I explained about Dylan and why I was concerned about details. He had a blue Nissan Juke that might suit me, he said.

It was one of those weekends when plans go awry. I’d hired the car so that Dylan and I could drive out to the Peak District and do one of our ‘big walks’ but that weekend Sheffield was caught in a deluge which brought floods to the city and surrounding area. The hire car sat unused outside the house until, frustrated by lost opportunity, I suggested to Dylan that we go for a short drive and have a picnic in the car.

Dylan was very happy with this.  The car suited him just fine. CD player. Comfy cabin. Nice gearstick (a particular interest of Dylan’s). Blue.  It didn’t, however, suit me at all. This was a Nissan Joke, I decided: keyless gimmicks and blind spots. I didn’t mind the colour though. I could live with that.  Suddenly it occurred to me that I’d been approaching the process of changing my car from the wrong starting point: instead of asking the car dealer to ‘find me a Fabia’ I should have told him ‘find me a blue ‘un’.

Red ‘Un

Last week I got a call from the car dealer. He’d told me that he wouldn’t waste my time and would only contact me when he found a Fabia in great condition. As I’d been waiting seven weeks, I assumed this wasn’t proving easy. ‘Am I going to have to compromise?’ I asked him. ‘Well it doesn’t have a CD player’ he replied. I pondered the news. I really needed to get back on the road. It was the mechanical condition and price that mattered, surely? It would be foolish of me to rule out a car on such grounds.  ‘Probably not a deal breaker’ I replied.

‘Great. I think you’re going to love it’,  he said:  ‘it’s pillar box red.’

Daddy

I’m always amazed by the way Dylan intuitively grasps new technologies. Even with his learning disability he is a Digi kid, understanding (unlike his mother) that devices need to be swiped not clicked.

One of Dylan’s favourite things to do is scroll through the photos on my iPhone at breakneck speed (recent to oldest and back again) pausing only for a favourite image (York Cathedral) or to query a photo taken in his absence. These include the photos my daughter sends via WhatsApp which magically appear in my photo stream: ‘Sister! Sister!’ Dylan tells me when he encounters them.

I often imagine I hear sadness in Dylan’s voice as well as bewilderment. I tell him that ‘sister is at school’ which is the nearest I can get to an explanation for my daughter’s absence. It seems to satisfy Dylan in that he repeats it back to me: ‘Sister school’ is one of the few two-keyword utterances he produces regularly.

‘Daddy! Daddy!’

My ex-husband remarried recently and my daughter and her half-sister were bridesmaids. Swiping through my iPhone photos the weekend after the wedding, Dylan froze, his finger hovering mid-air over a photo of the three of them (sent by my daughter via WhatsApp): ‘Daddy!  Daddy!’ he shouted.  I didn’t know what to say. I don’t have photos of my ex-husband around the house and Dylan hasn’t had more than fleeting contact with him since we divorced 15 years ago. I thought my heart would break.

I should have realised. Although my ex-husband is not Dylan’s biological father he co-parented Dylan from six months old to ten years. My ex-husband (my daughter’s biological father) is the man Dylan knows as ‘Daddy’.  And I know from my own experience, and from what my daughter tells me of hers, that separation can have an enormous impact on a child.

I really should have realised. After all, I have just finished writing a book about the impact of divorce on a mother’s relationship with her daughter.  I have reflected on and written about the ways in which the end of my marriage affected my daughter. Why didn’t I consider that Dylan would also be affected by this? Because Dylan wasn’t able to talk to me about it I was able to ignore the weight of it? What else is Dylan carrying, I wonder? How much more lies underground?

Step Relationships

I think I knew really. I just didn’t want to admit it.  I’ve written before about the way Dylan finds emotional release through music. How he loves Sting’s Fields of Gold (which his Daddy used to dance him around the room to). How he can’t bear to listen to U2s All That You Can’t Leave Behind (the soundtrack to my divorce). And now I remember the way Dylan would look at me with questions in his eyes when his Daddy called to collect just his sister at weekends and holidays.

I remember my solicitor telling me, during divorce proceedings, that in her experience non-biological parents rarely claim access to a child following a divorce. While I didn’t think I had any grounds for claiming access to my step-daughter, I thought it might be different for my husband and Dylan. After all, my stepdaughter had a mother whereas my husband was the only daddy Dylan knew. They were, to all intents and purposes, ‘father and son’.

I was surprised my ex-husband didn’t want contact with Dylan after the divorce especially as he’d previously asked if he could adopt Dylan. Already aware the marriage was unravelling, I had said no to his request at the time.  Perhaps in this I considered my own best interests rather than Dylan’s? Maybe it would have been better for Dylan if I’d have said yes…

Long Lost Families

I might not have realised how hard being a parent is but Dylan’s biological father had been clear about this. He was not prepared to co-parent another child he told me (he had two from a previous marriage and had not found parenthood easy). If I continued with the pregnancy, I’d be on my own.

When a relationship ends we are careful to tell children it isn’t their fault and that the split is nothing to do with them. How would I explain things to Dylan when he was old enough to understand I asked myself, after he was born? Watching Long Lost Families I wondered how a searching child would feel if they found a father like Dylan’s, who didn’t want to be found.

Anxious about the future, I asked Dylan’s biological father to write something I could give to Dylan when he reached 18. When he refused, my patience ran out and I hacked into a display case of photographs at the college where we worked, replacing a professional shot of my ex- with something a little more personal. It was wrong (today we call this ‘revenge porn’) but it made me feel better. The photo I stole from the display case is lost. It doesn’t matter now. As it turned out, it wasn’t needed:  Dylan doesn’t have the capacity to understand his biological father’s absence.

Finding Daddy

The photo of my daughter and her half-sister at their dad’s wedding arrived on the day Dylan and I headed south for our annual summer holiday. This year I had booked a cottage on the coast, selected for its proximity to the things which Dylan loves: beaches, steam trains, country walks, rivers, castles and cathedrals. I didn’t subconsciously choose it (did I?) because it lay within spitting distance of the college where his biological father and I had worked.

If I had been taken by the idea of taking Dylan down memory lane I didn’t think about it while we were there. Even Dylan’s ‘Daddy! Daddy!’ cry didn’t bring that other daddy to mind in the week we stayed nearby. It wasn’t until the morning of our departure, when google maps directed us to an alternative route and I found myself driving past the college, that I thought about him. I cast a sidelong glance at the campus as I drove by. Then, from compulsion, did a u-turn and pulled into the college carpark.  Dylan looked at me quizzically. His script read: ‘next stop lunch’.  “Let’s have a walk before we get on the motorway, Dylan.” I said.

So Dylan and I spent a half hour strolling around the college grounds in the blossomy hum of summer. There were a few new buildings but the place felt eerily familiar. “That is where mummy used to work” I told Dylan, pointing at a red brick house.  “And here”, I added, “is where your daddy’s office was”. I photographed Dylan standing by the building, looking like his father.

It isn’t easy to talk about complex issues with someone with a learning disability, especially when they are ‘non-verbal’, and I have no idea how much Dylan understands of what I shared with him that day. But Dylan’s reaction to the photos on my iPhone had revealed how important family is to him, and how acutely he feels the loss of it, and I wanted to acknowledge Dylan’s emotional life by bringing his history out, into the open.

 

Selfie in the college car park…

 

 

 

 

 

‘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’.

 

 

Being Harry: Autism and Virtual Reality

While I was watching England hold their nerve against Columbia last week,  Dylan was in Whitby with his key worker and another member of staff. Dylan is impatient for the sea and the overnight trip had been planned to help Dylan manage the wait-time for his summer holiday.

I know that not everyone is interested in football. However, the progress of the current England team is so unexpected that even those without any interest  in the game (my Dad, for example) are aware of what is happening.  It feels a bit like fantasy football.  I’m sorry that the trip has coincided with the England match, I said to Dylan’s key worker.  I had an idea he might otherwise have been  watching the match in the pub with his mates.  That’s OK, he replied.  I would have been working anyway.

Team Changes

Dylan’s key worker also told me he would be moving on soon.  I wasn’t surprised by the news. I understand that young people, wanting to start a family of their own or buy a first home, have financial considerations which affect decisions about work. As I’ve noted before, support workers are not well paid for the job they do.  Caring for others is one of the most demanding and valuable of roles and yet it is also one of the mostly poorly rewarded. As a consequence, staff turnover is high.

Dylan has been lucky to have been matched with experienced staff  but, even so, he has already had three different key workers. When Dylan’s first key worker left I was devastated. It hadn’t occurred to me, at that point, that this would be a feature of life in residential care. When Dylan’s second key worker left, after a fairly brief succession, I realised the role would always be temporary. The key worker may be the warden of the key but I shouldn’t assume they would be around long enough to unlock the door (as it were).

A potentially positive outcome of this situation, however,  is that it has helped me identify one of the  arguments I will make on my application to be appointed Dylan’s Welfare Deputy:  given the high staff turnover in the care sector, the continuity of support which a family member provides is invaluable, particularly in the context of someone who, as well as lacking mental capacity,  is autistic and non verbal.

Harry’s World

An American friend emailed recently to say she would be visiting with her teenage children next month.  Maybe we could visit Harry Potter World? she wrote.  I was excited by the idea but when I looked online I realised it was impossible; Harry Potter World is already booked up for the summer.

When Dylan’s first key worker moved to a new job she organised a trip to Harry Potter World for Dylan and another young adult. As well as a fabulous day out for the staff and residents, this was a good way of marking E’s departure. So when Dylan’s current key worker told me he had a new job, I commented that the trip to Whitby was perfectly timed in terms of helping Dylan make a connection with saying goodbye.

The trip to Harry Potter World was Dylan’s first immersive experience (I’m sure he would love Disneyland but I’ve never had the oomph to take him). Dylan, apparently, had a marvellous time,  ‘laughing all day’. They had arrived slightly early for their tour, having driven down from Yorkshire,  and the Harry Potter staff, realising the wait might be difficult for Dylan, had let them join an earlier tour and proactively made adjustments for Dylan, such as front row seating.  I couldn’t fault their practice, his key worker told me, it was an absolutely brilliant day.

 

Virtual Reality

Afterwards I wondered what Dylan had made of the experience. Did he think he was at Hogwarts? Does he believe Harry Potter is real? I remembered a conversation with a clinical psychologist at a time when Dylan’s ‘behaviours’  were a cause for concern. As we worked through his ‘incident charts’ the psychologist noted the link between Dylan’s anxiety and the films he watched.  It may be the case, the psychologist suggested, that Dylan cannot differentiate fantasy from reality. Perhaps, when he is watching a distressing scene in one of his DVDs, he finds it difficult to regulate his emotional response. Dylan’s extreme reactions to some of his films are understandable if you imagine them as responses to situations he believes are real. After all, these are extreme situations:  separation; loss; death; war.

Apparently there are ‘immersive cinemas’ which offer a total sensory experience. As well as a film being a visual and aural event, the senses of smell, touch and taste are engaged.  Thus during an ocean scene the audience might be sprayed with water; in a domestic setting, smells of home cooking could be released into the auditorium. I’m not sure whether this would be a good or a bad thing for Dylan, given his heightened sensory function.

I have similar reservations about the possibilities offered by Virtual Reality Headsets.  As they have become available on the mass market I’ve toyed with the idea of buying one for Dylan. Some aspects might appeal  – Dylan spends so much time watching films that the idea of him being able to enter an immersive and participatory environment is quite exciting. I’ve seen some people, however, become disoriented  when using the Headsets and describe the experience as unsettling. Equally, therefore, I can imagine Dylan being made anxious by such full engagement of the senses.

Fantasy Football

Right now, I feel as if I’m wearing a Virtual Reality Headset. England? In the World Cup semi-final? For the first time I changed my plan for spending time with Dylan last weekend. After the 120 minutes plus penalties marathon against Columbia earlier in the week, I wasn’t sure Dylan and I could spend Saturday afternoon together without one or both of us becoming frustrated. Dylan can cope with a little bit of football on TV but he has his limits. And I really wanted to watch the England v. Sweden match. Could I pick Dylan up on Sunday instead of Saturday? I asked staff.

It really does feel like a Fantasy Football Tournament. The scenes from the Samara Stadium last Saturday seemed beamed from a parallel universe.Are those fans trapped in Virtual Reality, I wondered? Has my TV turned into a giant VR Headset? When England won I toyed with the idea of getting on a plane to Moscow to find out.

If England do get to the World Cup final this year, I told myself, someone will set up an It’s Coming Home theme park where we can re-live the matches, as players or fans, in a fully immersive world.  The theme park will probably be somewhere just off the MI –  hopefully in the north, rather than the south, in honour of the contribution made by South Yorkshire to the winning England team. So while Dylan hangs out with Harry Potter, I can celebrate with Harry Maguire…

 

 

Note:

The photographs of Dylan at Whitby and Harry Potter World were taken by staff on the trips.  The other images are sourced from the Internet and to the best of my knowledge are copyright free.

The photograph from the 2018 World Cup shows England players celebrating a goal in their match against Sweden at the Samara stadium on Saturday 7th July. The goal was scored by Harry Maguire (second from right in the photo) who is from Sheffield, my hometown. In the photo he is being congratulated by John Stones who is also from South Yorkshire (Barnsley). The photograph shows Kieran Trippier on the left and another Harry (Kane) on the far right.

The final photograph shows the 1966 England World Cup squad. I was alive but too young to remember 🙂