In my last post I reflected on the challenge of caring for a vulnerable adult who lacks the capacity to understand lockdown. Dylan’s intellectual disability and autism mean that even in ‘normal’ times he engages in what could be considered socially inappropriate behaviour; in the context of a public health crisis, a lack of regard for social norms such as distancing can result in challenging rule breaks. In this post, I celebrate the fact that Dylan breaks the rules and rejoice in the unexpected places this can lead…
22nd March, 2020 (Mothering Sunday, UK, Ireland)
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 26th birthday in Durham the previous weekend but returned to the news that we were to stay at home other than to take exercise, shop for food, travel for essential work or provide care to vulnerable people. The trips and activities which had been scheduled for the week, and which Dylan was expecting to happen, could not go ahead.
While staff at Dylan’s home threw themselves into designing lockdown activities for the residents, I tried to think of alternative activities for the up-coming weekend. As I would be providing care to a vulnerable person I could still see Dylan, but our planned outing to Renishaw Hall was out of the question. This is an annual routine which helps me with Mothering Sunday, a day I have found difficult since my mother died in May 2006. I enjoy receiving cards and gifts from my children but it doesn’t lessen the pain of not being able to see my own mother. In some ways it makes her absence more acute, now I am un-mothered.
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.
I set off driving along the road between Dylan’s residential setting and my home, along which the reservoirs are scattered. ‘Renishaw is closed today, Dylan’ I told him. ‘Let’s walk around a reservoir instead.’ I was still wondering which one when, at a bend in the road, I remembered Broomhead. It isn’t a reservoir we visit, really. We walked around it three summers ago for the first time in years. There are no routines associated with it and there is no pub nearby. It also tends to be quieter than other reservoirs. Perfect for lockdown then.
I eyed Dylan through the rear-view mirror as I parked up. He was thinking about something I could tell, his face a blend of surprise and alert. Dylan and I set off walking anti-clockwise along the reservoir’s south bank. When we reached the cross-wall at the reservoir end, where I expected Dylan to turn left and head back by the north bank, he chose to walk on. Here, Broomhead Reservoir trickles into Morehall Reservoir like a tear. As we more often walk around Morehall, I assumed Dylan was hankering after a familiar landscape. There was probably enough time for us to walk around both reservoirs. ‘Alright Dylan’, I said.
But to my surprise Dylan made a wedge-shaped turn and doubled back on himself to the road which runs between the reservoirs, separating their two tears. He must be crossing to the opposite bank to walk our usual clockwise direction around Morehall, I thought to myself. I quite liked the idea of walking a figure of 8. But rather than make a right turn when we got to the other bank, Dylan turned left. So, he did want to walk around Broomhead? I looked at Dylan. He had a glint in his eye. There was, I suddenly realised, something looming up ahead.
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.
Why? I don’t remember. The wrong word at the wrong time. A mistaken look. A misjudged silence. ‘Something and nothing’, as my mother used to say to us when we squabbled as children. The only thing I’m sure of, looking back, is that grief undoes people. It pulls the ground from under them. And it takes people in different ways at different rates. And in those desperate days we can say and do unthinking things. It is a painful unravelling. A wild reeling. A terrible scrabbling while the earth tilts.
After, as the estranged days became weeks then months then years, I wished there was someone to help fix things. Someone who would have understood it was because we were hurting. Someone who could have supported us through our stubborn silence. Someone who would have helped us to heal. What do you do when that person has gone? I didn’t realise, while she was alive, how responsible she was for holding the family together.
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?
Today, Dylan is ahead of me, gathering pace. As we draw level with the house in the woods I call his name softly, hold out my arm. Dylan ignores me and I call him again, more urgently: ‘Dylan! Dylan!’. But there is no stopping him this time. He is heading towards the house that he remembers. He is striding up the path at the side of the house, following the route he has always known. I call him more sharply: ‘Dylan! Come back Dylan!’ But he has crossed the back yard and is heading for the door.
What is he remembering? Family gatherings on Boxing Day. Cakes and biscuits and orange juice. An exercise bike in an upstairs room. A fire. Men with beards. His Gran. Watching films in a room with a big glass window. Escaping unnoticed upstairs while the big people talk and laugh. Riding pillion with me on his uncle’s motorbike along the private track (probably especially that). Who knows what Dylan remembers of those days.
I pick up pace. I must hoick Dylan back to the reservoir path. I need to restore the day to normal. I want to shout but don’t want to attract attention. ‘No, Dylan, no!’ I hiss at him. But it is too late. He is opening the door. Walking in. Not even knocking! Now he is in the house. I am outside, utterly at sea. Surely, it will swallow me? I poke my head around the door pleading: ‘Dylan come back.’ But he is on his knees in a corner, browsing DVDs. ‘I’m so sorry’ I say, as my sister and her husband appear. ‘I’m so sorry’. She takes me by my hands, looks into my eyes. ‘It’s alright’, she says. ‘It’s alright. Don’t worry.’
After 14 years it took Dylan to bring this reconciliation about. Only Dylan could have done this. It needed someone driven by feelings and desires – uninhibited by real or imagined hurts and slights, ungoverned by social rules or convention. After all these years of wondering whether a family wound could ever be healed and worrying that none of us would fix things, it was Dylan who made it better.
Bless Dylan. How I love that, in the end, it was this young man – whose autism and intellectual disability famously confer deficits of imagination, social understanding, empathy, cognitive capacity and communication – who brought this about. Blessings on my passionate, strong-willed, opportunistic son.
Breaking the Rules
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.
As Dylan and I made our way back to the car I was conscious of a slackening inside, a different relaxed. The light was warm and honey-coloured. We stopped once or twice and took photographs. Later, when I looked at the pictures on my phone, I was struck by the relief in my face. I texted my sister. ‘I am smiling at the news on the radio not to see family today.’ ‘I think we can just about make an exception in this case’ she replied. We marvelled at the circumstances that had reunited us and at the serendipity of it being Mother’s Day. ‘Mum will be smiling on us’, my sister reflected.
Since Mother’s Day, my sister and I have observed lockdown. We hope to meet again soon!