Routine is important for Dylan, but he also responds to variety. Routines can be comforting, but the more routinised Dylan’s care is, the more scope there is for Dylan to become upset when things don’t happen as he expects. Much better, perhaps, to surprise Dylan with a new experience about which he has no expectations and around which no routines have had chance to form. This Christmas I was reminded of some of the benefits of that.
Chatsworth House
On the run up to Christmas, Dylan started collecting leaflets for ‘Christmas at Chatsworth’. Dylan makes piles of leaflets to show us what he’d like to do. They’re his way of putting in a request. It took me a while to realise this is why Dylan picks up leaflets when we’re out and about, but once I did it made good sense. Now, Dylan has his own leaflet rack in his apartment, where he can sort and store flyers and brochures.
When I looked at the ‘Christmas at Chatsworth’ leaflet I had my doubts. The event involved a tour of the House, a Christmas Market, and an illuminated garden walk. While the event looked lovely, it wouldn’t fit with Dylan’s routines. We are regular visitors to the Chatsworth estate, but Dylan’s routine doesn’t include the House. The illuminated walk around the gardens would almost certainly not follow Dylan’s usual route. What if the Maze was closed? The café would be too busy or not serving Dylan food. The Market Stalls would be noisy with people. It was after dark. Really, there was nothing to recommend it.
But feeling brave one morning I booked tickets anyway. I was sceptical about our allotted 18.15 admission to the House (teatime) and unsure how long to allocate for pre-House activities. With transitions between activities needing to be smooth and perfectly timed, I approached the event with low expectations and some trepidation. However, it was a perfect evening. There is something about the dark, perhaps, which helps us try new things. Dylan adored the outdoor Market. He danced to a rag ‘n’ skiffle band, browsed the market stalls, and enjoyed a street food tea. He followed the illuminated walk happily, even though it ran counter to his usual route and omitted his favourite places. Other things seemed to become magically possible for him: Dylan stood for a long time watching a sound and light show unfold a storybook narrative on the façade of the House.
Inside the House, Dylan made his way through the rooms in amazement, lingering over paintings and staircases, eyes popping at the advent decorations hanging from ceilings and walls. We’ll come back soon, I promised Dylan, as I encouraged him from the House. I suspect we’ll also return next Christmas: from such experiences, Dylan’s routines form!
Disney on Ice
A change of email address meant I didn’t get the usual notification for Disney on Ice and by the time I’d realised there were few options left. The idea that Dylan wouldn’t go was unthinkable: all year, driving past the Sheffield Arena, he reminds me. I spent a frantic hour on the website. There were a few likely seats, but I couldn’t see a way of booking Disabled and Carer, as I usually do. Why is it that these are so often not selectable online? I decided it was more important that I snapped those tickets up while I could. If I kept fiddling with the website, trying to find accessibility options, I risked losing them.
The only problem, I realised after, is that I hadn’t been able to book disabled parking for Dylan. Our routine, each year, has been that we drive to the Arena and have a pre-show meal in Bella Italia. Dylan loves this, it seems, as much as the ice dancing. ‘Di-ne-i-pas-ta’ he chants when we drive past the Arena. But Disney on Ice with pasta is dependent on precise timings and transitions which I had no intention of attempting to orchestrate without a parking space. What was I to do? I decided we would use the tram. Although the logistics meant there would be no meal, I hoped the novelty of a tram ride would be compensation enough. Happily, this proved the case. Dylan’s joy on the tram was a joy to witness.
We can get ourselves boxed into over-preparing for a vulnerable adult. It’s great to have the option of Blue Badge parking and useful to have access to private transport when things go wrong. Essential, you could say, when a vulnerable person becomes distressed while out and about in the community. However, it can also limit the opportunities for joy. I suspect I may hear a new song this year when we drive-by the Arena: ‘Di-ne-i-tram’.
Polar Express
Over-preparing may have its shortcomings but so does under-preparing. I accused myself of this on the platform at Sheffield station, waiting for a train to Birmingham, Dylan flapping with excitement on my arm. I had only just noticed that our tickets didn’t include reserved seats. I’d been so keen to save money I’d selected an offer which left seats open. Friday, late afternoon, on the most popular office party day of the year. How foolish of me.
Dylan had been collecting leaflets again. Like many childlike souls, Dylan is obsessed with the Polar Express. Let me see that, Dylan, I said to him one day, when he greeted me clutching a wad of flyers. ‘Press’ he said (meaning Polar Express). But this is for Birmingham, I exclaimed. Too far away. Sorry. No. But Dylan kept finding these leaflets somewhere. Every time I picked him up he came clutching a thicker wad of Polar Express leaflets. Call me soft but after one home visit, when he’d carried the leaflets with him everywhere, I relented.
Perhaps I booked the tickets at high speed before I changed my mind? I remember it was quite complex. Tickets for the Polar Express ride on Saturday morning. A Premier Inn booking for the night before. Pizza Hut reservation for tea. Return rail Sheffield to Birmingham. Maybe by then I was too weary to check the T & Cs. At any rate, here we were on the platform, waiting for what would no doubt be a standing-room only train. I booked the trip believing but didn’t feel so brave now.
I was wrong not to believe. The truth is British people are lovely. I’m sure people are lovely everywhere but let me celebrate the British public on the train that day, and particularly the woman in the powder blue coat who swapped her seat to make space for us. Also, the couple on the even-more-packed Birmingham to Sheffield train the next day who let us have their seats because they were ‘only going as far as Derby’. Blessings on you lovely people. And let me never forget that nine times out of ten, when I’m out and about with Dylan, members of the public are understanding, helpful and kind.
The train journeys there and back would have been exciting enough for Dylan, by themselves, but these were only the bookends of our trip. We arrived in Birmingham to find the biggest Christmas Market ever. The city centre was a heaving sea of people. Dylan held tight to my hand as if in a dream. We rode the carousel and big wheel, ate pizza, walked canal towpaths, and stood for over an hour watching people ice skating, Dylan laughing and shouting: Whoops, Whoops, O Dear!
Arriving at Moor Street Station for the Polar Express ride the next day, I was amused to discover we were virtually the only people not wearing pyjamas. A humongous queue. Lots of little people. Maybe this wasn’t such a good idea. Except beside me, Dylan was waiting patiently. ‘Press!’ ‘Press!’ he shouted, squeezing my hand. Against all odds I would have hazarded, Dylan stood in that long line until we were through the barrier, then danced to the live music and song while we waited to be boarded.
Believe in what you feel inside
And give your dreams the wings to fly
You have everything you need
If you just believe
On the train, they were handing out cookies and hot chocolate. My son won’t drink his, I said. Still, they poured him some. Dylan transferred it into the ceramic mug he’d been given. Careful, I said. It’s hot. Dylan paid attention to the actors and dancers, listened to the story, and helped turn the big book pages. He ate my cookie and shouted ‘Steam! Steam!’ as our window turned white. What was there not to like? Only the hot chocolate, really.
Hot! Hot!
Ooh, we got it!
Hot! Hot!
Hey, we got it!
Hot! Hot!
Say, we got it!
Hot chocolate!
Why don’t you try it, Dylan, I said. It’s only chocolate milk. Leave it to cool if you want. And to my surprise, Dylan picked up his Polar Express mug and drank it up. Back at Moor Street, with time to spare before our journey home, I headed back to the Christmas Market. There was something I needed to check. Come on Dylan, I said. I’d seen people walking around with little red cups earlier. I hunted down the stall. Hot chocolate, Dylan, I said. To my amazement, he drank it. At almost 30, Dylan has added a hot drink to his repertoire.
The Sea
Between Christmas and New Year my car let me down twice. I had to wait two hours for recovery from the short stay car park at the railway station where I’d gone to say goodbye to my daughter, returning to London. Freezing. Hungry. No money. Miserable. At least I didn’t have Dylan with me, I told myself. A couple of days later, when I left my friend’s almost new year party, my car wouldn’t start again. I abandoned it and got a cab. At least I wasn’t with Dylan, I told myself.
And then I realised I might be. Dylan and I always go to the coast for New Year. It’s what I call a tradition (rather than a routine). Cleethorpes, in Lincolnshire, happens to be the nearest sea to Sheffield so that’s where we go. We walk the coastal path to the Humberston Fitties where Dylan checks on all his favourite chalets before heading back to town for a chip supper. The thought of Dylan and I stranded in Cleethorpes preoccupied me the whole of the next day, even when my friend assured me he’d found and fixed my car problem. And then, a solution. If Dylan had accepted Disney on Ice by tram, perhaps he would accept Cleethorpes by train? Providing, I told myself, I could reserve seats.
On the website, I found something even better: First Class tickets at a not unreasonable cost. So, we travelled in style through fields of dykes and winter cabbages under a bright sky, the carriage to ourselves and Dylan in his element listening to Adele on his iPad and admiring the curtain at our window and the table lamp, while I got to relax. On the return journey I vowed that (providing the prices weren’t silly) I would always book First Class when travelling with Dylan in future. The next day, however, hundreds of people were reported to be stranded at Doncaster Station as the line was flooded, and services cancelled. First Class rail might be better than driving, but only if the trains are running. It seems we got lucky.
*
The things Dylan and I enjoyed most this holiday season were twists on familiar activities or new experiences which required one or both of us to be a bit brave. These might seem like very small challenges, but if your needs are as complex as Dylan’s then they are enormous achievements. This Christmas, Dylan tasted his first hot chocolate. That it’s still possible to introduce Dylan to new experiences and activities gives me hope.
https://www.youtube.com/watch?v=sc6IHUdl3V8
The annual report I have to submit as Dylan’s Court of Protection Deputy is due so I’m reading through my ‘Dylan book’, noting the significant things that have happened in the last 12 months. I’ll need to explain the decisions I have taken on Dylan’s behalf and the issues I anticipate having to respond to in the future. Although the reporting process is a bit onerous, it’s a useful exercise in that it requires an evidence-based review of Dylan’s life. 
The difference between how Dylan is with me at weekends and his behaviours during the week is stark. There are regular reports from Dylan’s residential setting of behaviours which are considered challenging, but I rarely witness these myself. As it’s not appropriate or possible for me to care full time for Dylan, I need to identify the aspects of home life which promote Dylan’s well-being and happiness in order to apply these in his placement setting. 
So, when I returned Dylan to his care home last Easter, I explained how beneficial physical exercise appeared to be to Dylan and asked whether his long afternoon walks could continue. My sense was that walking helped. Could Dylan please do as much as possible, preferably between his preferred hours of 2 and 6pm? 
The challenge of advocating for a young man who ‘lacks mental capacity’ and who doesn’t use speech to communicate is understanding what his behaviour signifies and working out how best to respond. Hunches about what might be distressing Dylan may be interesting and sometimes accurate but difficult (or impossible) to confirm with data. While I quite often act instinctively, I much prefer firm (or even soft) ground for my decisions. In this respect, Dylan’s daily care (not just my annual report) is based on evidence. What other way is there to figure out what is in the best interest of someone non-verbal who lacks capacity?
As it turns out, the summer numbers I thought untrustworthy were probably not. The data collected subsequently replicates the initial readings, suggesting a clearly differentiated step pattern in the different settings. This may or may not be related to patterns of behaviour in Dylan’s two locations. I haven’t mapped the step data against the incidents of ‘challenging behaviour’ in the care home but that would be the thing to do to fully explore the relationship between walking and well-being for Dylan. 
By chance I was ten minutes away from Dylan’s care home when I took the call. I had arranged to meet a friend at the cinema that night. ‘I’m just going to check all is well with Dylan’, I said to her as I arrived. ‘I missed a couple of calls while I was driving’. ‘At least we’re nearby if not’, she replied, rolling her eyes. 
In the seven years he has lived at the care home Dylan has never attempted to leave the setting. He doesn’t have a history of running away although he will run towards something he wants and can see (sweets, for example, or DVDs). Although Dylan isn’t technically an ‘absconder’, the risk of him running from carers is written into his care plan. 
Later, I remembered that there had been another time. I don’t have a strong memory of it because the details reported at the time were sketchy. Enough to terrify me though – enough for me to have blocked the memory, buried it deep in my core. While I don’t recall exact dates, I’m pretty sure Dylan still had that green polo shirt. Eleven years old perhaps? My ex-husband and I were not long divorced. I was working full time and struggling to get chores done. I couldn’t take Dylan to the supermarket. No online shopping back then. My daughter to get to Stagecoach too. I just couldn’t manage Saturdays. So, I enrolled Dylan in a play scheme at a local Inclusion Centre.
The child in a green t-shirt. The boy on Penistone Road. The young man running from the care home. Dylan has used up three of his lives, it seems. On each occasion he was being supervised by a parent or professional who believed Dylan was safe. Each time, he evaded their care, placed himself at risk. How do we keep children and adults who lack capacity safe? How can we plan for the unpredictable and unexpected – the ‘never before’ – without leaving life a dull and limited thing, removing the space a person needs to breathe?
Coal miners carried caged canaries into underground tunnels as the birds would alert them to the presence of noxious gases. I think of Dylan as a sort of ‘pit canary’ for the environments we have to negotiate in our daily lives. If a place or situation triggers ‘behaviours’ in him then It might suggest that there is something stressful about the circumstances which could potentially unsettle any of us. 
Speaking of Arenas, I was relieved to be able to take Dylan to his beloved Disney-on-Ice at Sheffield Arena last month. It’s become an annual Christmas tradition for Dylan and one that he missed terribly in 2020 when it was cancelled due to Covid-19. I optimistically bought tickets for this year’s show and crossed my skates that it would go ahead. 
In November Dylan thoroughly enjoyed an overnight stay at the Premier Inn in Cleethorpes. We have visited the resort regularly as it’s the closest coast to our home city but we have never stayed overnight. On previous day trips, Dylan has pushed and pulled and cajoled me to the Premier Inn so that he can stand and gaze at it. He was needless to say in high excitement that this time he got to go inside (with a pumpkin lantern and Doctor Who).
To tell this story I have to go back to Mother’s Day which this year fell on the Sunday after the start of lockdown. Dylan and I had been celebrating his 
Government guidelines allowed me to take Dylan for exercise somewhere local. I decided the best replacement for our cancelled trip was a reservoir walk, something Dylan enjoys and for which there are multiple options . As I considered their relative merits, however, I realised that Dylan tends to associate reservoirs with pubs. Agden and the Old Horns. Langsett and The Waggon & Horses. Underbank and the Mustard Pot. Redmires and The Three Merry Lads. Dale Dike and The Strines Inn. This could be problematic.
As Dylan strode purposefully up the road I thought of her. How could I not? This is where my sister used to live, in a waterside house, off to the right, tucked in under ancient trees. Perhaps she still did? I hadn’t had any contact with my sister since our mother died . Across those 14 years, the weight of silence had become too heavy to carry and too much to break.
When Dylan and I walked this way, three summers before, I had been aware of his gaze on the house beneath the ancient trees. Perhaps he gestured at it in the questioning way he has. I don’t know because I had turned my face to the ground, tightened my hold on Dylan’s arm, hurried him along. I remember feeling overwhelmed and anxious. What if she saw us?
As the first weekend we would be in lockdown happened to coincide with Mother’s Day, Government briefings had particularly noted that the rules meant no contact with families. After 14 years of having had no contact, Dylan and I stayed a couple of hours with my sister and her husband. We spent the time chatting and drinking tea. Dylan gazed at an architectural drawing of the Natural History Museum and lobbied for chocolate biscuits. By the time we left he had explored every room in the house and helped himself to four DVDs. On our way out of the door, unprompted, Dylan extended his arm to his aunt and uncle in turn, shook them by the hand. ‘We’ve broken every rule in the book today’, I observed.
An NHS guide for patient management during the coronavirus pandemic notes that ‘People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely’ (see link below). In 2018-19, apparently, at least 41% of deaths of people with a learning disability were from respiratory conditions. Among those with a learning disability there is a higher prevalence of asthma, diabetes and weight conditions (obese or underweight) which make this group ‘more vulnerable to coronavirus’. The guide notes there is therefore ‘strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic’. It also cites evidence that people with autism have higher rates of health problems which ‘may result in elevated risk of early mortality’. Although Dylan doesn’t have the underlying conditions which increase vulnerability to coronavirus, his autism and learning disability mean it’s impossible not to worry.
Dylan’s combination of autism and intellectual disability (which I’ll refer to as AutID from this point) means he requires 1:1 support in a residential setting. This puts him at increased risk of infection because he has contact with a large number of support workers (and, by association, their families) which increases his potential exposure to the virus. As we have seen in relation to the elder population, the social ‘bubble’ of a locked-down care home is large and intimate enough for the virus to spread quickly once it has been introduced.
It’s all very well having an adequate supply of PPE but adults with AutID may not accept these. This will vary for individuals but Dylan will not tolerate wearing a mask or other people using them. The NHS guidance referred to earlier acknowledges this and advises clinicians that ‘masks and protective clothing may frighten [people with AutID], make them more anxious and lead to adverse behaviours, such as hurting other people, hurting themselves and destroying property.’ This is a pretty accurate description of Dylan’s likely response to an insistence on wearing face masks and it’s good to see such information being issued to front line staff. While I don’t think Dylan will ever accept a covering over his own mouth and nose, I’ve found he will accept me wearing a scarf over mine. This is a simple adjustment, enabling me to do what I can to protect Dylan.
As the NHS guidance notes, some people with learning disability may be unable to explain how they feel or ‘not be able to articulate their response to pain in the expected way’. Dylan’s communication is limited but he does say ‘oo’ or ‘poor Dylan’ if he is in pain or feels unwell. Sometimes the words he chooses can mislead, however; Dylan uses ‘sick’ to communicate that he is hungry for example. It took me a while to figure this one out but it makes perfect sense – a not very nice feeling in his tummy – and reminds me that Dylan is creative about communication and will substitute a word he knows for one he doesn’t. The NHS guidance includes links to useful resources such as the Non-Communicating Adult Pain Checklist and Wong-Baker FACES Pain Rating Scale, which I’ve been using with Dylan at weekends to encourage him to show me how he feels.
The NHS guidance is aimed at front line staff treating people with AutID for coronavirus infection in a hospital setting. While it is reassuring that specialised guidance has been provided about the needs of this very vulnerable group of people, the prospect of Dylan requiring hospital treatment for Covid-19 fills me with dread.
For Dylan, support is everything at this time. His contact with me continues as normal, thanks to the guidelines which allow people to provide care for the vulnerable. Dylan’s relationship with support workers is also continuing as usual, due to good management and health practices in the home. Perhaps Dylan notices subtle differences in the way we interact with him. He has a range of games and rituals which involve physical contact, for example. I’ve noticed some members of staff pull back or move Dylan on (understandably) and sometimes I think I see a puzzled look in Dylan’s eyes.
It’s a nice idea isn’t it? I would like to believe this might be how the story ends. While I don’t doubt there is strong public support for the health and care sectors, it would be easy to doubt the political will. In particular, some of the provisions of the Coronavirus Bill, which slipped quickly through Parliament at the start of the pandemic with minimum discussion or scrutiny – and which passed into law as the Coronavirus Act on 25th March 2020 – are a cause for concern.
Dylan is in the habit of greeting people with a hand shake while out and about in the community. He doesn’t take the hand of every passing stranger, and he doesn’t do this every time he goes out, but if he sees someone he likes the look of he will extend a hand.
After the trip to Bakewell I suggested to staff at Dylan’s care home that he wear gloves on trips out. That should reassure the public, I thought. More importantly, someone pointed out to me, it would protect Dylan. While Dylan wouldn’t choose to put gloves on, he is quite happy to wear a pair if he is given them. That’s a lucky thing, I thought to myself.
As February gave way to March I turned my attention to plans for Dylan’s birthday. As well as a weekly programme Dylan has a monthly countdown chart and for weeks Dylan had been ‘asking’ when his birthday would appear. Dylan had been promised a trip, by train, to his beloved Durham and an overnight stay in his hotel chain of choice (Premier Inn). I had already booked the tickets and accommodation and on weekend visits home Dylan would check the documents were still on my desk and ask ‘Deeham? Bur?’
I wondered if I could persuade Dylan to wear a face mask. I trialled two versions: dust masks from the local hardware store and medical masks from Dylan’s care home. Not only would Dylan not accept either of them, he wouldn’t let me wear one either. This may be because the 
My anxieties about the journey proved unfounded and we arrived without incident. As well as an emergency kit I had packed candles and matches as the first activity on Dylan’s programme was to buy a birthday cake. We called at a supermarket on our way to the hotel. Dylan chose a Peppa Pig cake (I would never have got that right if I’d bought it in advance).
Dylan re-traced a familiar route through the city but there were changes since our last visit. Dylan’s favourite café had been re-branded and now sells Thai food. Dylan had been talking about the potato with butter and cheese he was planning to order for his lunch since we planned the trip and I felt my sharp intake of breath as I steeled myself for Dylan’s reaction. And is it the magic of being 26 that means Dylan can shrug this off, accept my proposal of the Cathedral café for lunch instead?
After years of renovation, the Cathedral tower had re-opened. Dylan chose to climb the 325 steps to the roof where he edged gingerly around the railings saying ‘whoops’. Inside, the university orchestra were rehearsing for a performance of Bruckner’s 4th Symphony. After our trip up the tower, Dylan and I sat for a while. A birthday blessing.
The next day, over breakfast, I checked the local attractions. Apart from the Castle, everything appeared to be open as normal. I suggested to Dylan that we take a walk around Wharton Park which we hadn’t visited before. From the Battery above the railway station we watched people waiting for the Plymouth train. I tried to count the peals of bells ringing out across the city. We walked down Sidegate to Crook Hall where the maze had thickened since our last visit. Dylan checked all the dead-ends before heading to the café for lunch.
The departing students and disappearing paracetamol were the only signs that we were on the cusp of change that weekend. An ‘essential journeys only’ directive was issued the day after we got home. The next day, the university where I work moved all teaching online. The following day, confirmed cases of Covid-19 in Sheffield reached 36. By the end of the week the schools had closed. At the weekend we were asked (and, when the public disobeyed, subsequently told) to stay indoors. Dylan’s birthday trip had turned out to be a last gasp before the collective intake of breath.
The combination of a dog and Dylan is unthinkable. While there are moving ‘rescue narratives’ of therapy dogs who have transformed the lives of autistic children and adults, narratives of autism and dog anxiety are equally powerful. Dylan is absolutely terrified of dogs and I know from contact with other parents of autistic children he is not alone in this.
While the calmest of dogs is not enough for Dylan to unlearn fear, the thing that is guaranteed to send his anxiety sky high is an excitable dog. What Dylan cannot cope with is unpredictable behaviour. The reality is, however, that it is usually Dylan’s reactions to dogs which trigger their excitability, creating a situation where both Dylan and dog are leaping about, running in frantic circles, barking or shouting. ‘Worry, worry, worry’ Dylan yells repeatedly. This is Dylan echoing back the final part of the phrase I say to him when we encounter a dog: ’It’s alright, Dylan. Don’t worry’.
But then, shortly before Dylan moved to residential care, Dylan had a curious encounter.
The friend who questioned my reasons for wanting a dog, in the immediate aftermath of Dylan moving to residential care, was right to do so. Since then I’ve realised that if I ever do get a dog it will need to be once I’ve retired; that (never having owned one) I would need to do a lot of research; and that Dylan would need careful introduction. Also, it would probably need to be a cockapoo called Coco.
Living with Autism 