The Shaking Man

Or, as happens to be the case, The Unshaking Man.  Happily, Dylan hasn’t had a seizure since June 2021 when he received a diagnosis of epilepsy following three generalised tonic clonic seizures within six months. At least, as far as we know he hasn’t. 

Straws & Water 

‘Could you remind staff to offer Dylan extra fluid’, I emailed his care home during this week’s heatwave. One connection that was made, during Dylan’s previous seizures, was with hot weather. Another observation that was made, at the time, was with coronavirus. Dylan, like many young people with autism, found lockdown difficult.  There is evidence that epileptic seizures can be brought on by anxiety, something worth considering in relation to a young man whose lack of capacity and speech often leave him with extreme anxiety. This was almost certainly made worse by the pandemic. 

At least, that seems a reasonable assumption. It’s not easy to make claims about the medical and social impact of the coronavirus pandemic. While I don’t go looking for hypotheses or urban myths, I trip over a fair few in my real and parasocial lives (although as I’ve recently closed my social media accounts, I should encounter fewer in future). I tend to ignore these and would certainly not want to be responsible for spreading disinformation. 

However, something that I’ve been struck by (and hope someone somewhere is investigating) is sudden onset of epilepsy in adults following covid infection. I’ve spoken to several people (in clinical and other settings, as I’ve been supporting Dylan or accessing services myself) who’ve mentioned an adult family member who had an epileptic fit during the pandemic. These were described as one-off incidents that hadn’t developed into regular seizures, as seems to have been the case with Dylan. Maybe I’m clutching at straws, but the possibility that Dylan’s fits were triggered by a covid infection reassures me.  I suppose because it would reduce the likelihood of it happening again.  

Still, best keep that water bottle topped up.

Scales & Granules

‘How has Dylan put on a stone in weight?’ I asked the care home manager.  I already had a suspicion that he wasn’t getting enough exercise (which I’ve written about here). Now the possibility that Dylan’s sweet tooth had outwitted the support workers presented itself. We set up a Food Diary to identify any unhealthy habits. When nothing emerged, it occurred to me that Dylan’s weight gain might be linked to the daily 800 mg of Epilim Chronosphere granules (a form of sodium valproate) he has taken since his epilepsy diagnosis. A call to the GP confirmed this was likely: ‘lifestyle changes would need to be made’, the doctor advised, ‘to offset the long-term impact of the medication’.

‘Lifestyle changes’ in relation to food for someone who is autistic and who lacks capacity (and for whom food is a key interest and pleasure) are not easy to make. In fact, they are rather difficult for Dylan and likely to make him unhappy. Clearly, however, it is in Dylan’s best interest to maintain a healthy weight. If it is the Epilim granules that are raising the reading on the scales, then we must support Dylan to make those lifestyle changes. ‘Just one trip a week to Costa for millionaire’s shortbread, Dylan’. 

Happily, once we’d introduced a few changes Dylan quickly shed the excess weight and he is back to his lithe and lovely self. The potential impact of his medication on general health and wellbeing, over the longer term, does raise some questions for me, however.

• Is the Epilim preventing Dylan from having epileptic seizures? 
• What if the seizures Dylan had were due to covid or lockdown anxiety? 

If the absence of seizures is a result of effective prescribing, an associated weight gain seems an acceptable price to pay. But neither weight gain nor requiring Dylan to make distressing lifestyle changes are justifiable for unnecessary medication. The only way to test for this (controlled reduction of the medication) carries risks.  It’s harder to argue the case to trial this with someone else, than for yourself. 

Best keep giving the granules, then.

Epilepsy & Empathy 

In June 2021, when Dylan had his third and most dramatic seizure, I happened to be reading The Shaking Woman by Siri Hustvedt. The book had been recommended to me by a colleague who suffers from migraines. He had found Hustvedt’s story helpful in managing what had become for him an almost debilitating condition. Reading it might help me to understand my daughter’s severe attacks and to feel more able to support her, he said.

Hustvedt’s story begins in 2006 at a memorial service for her father at the American University where he had been professor of Norwegian until his death in 2004. Siri (an experienced public speaker) is about to deliver an address:

Confident and armed with index cards, I looked out at the fifty or so friends and colleagues of my father’s who had gathered around the memorial Norway spruce, launched into my first sentence, and began to shudder violently from the neck down.  My arms flapped.  My knees knocked. I shook as if I were having a seizure.  Weirdly, my voice wasn’t affected. It didn’t change at all.  Astounded by what was happening to me and terrified that I would fall over, I managed to keep my balance and continue, despite the fact that the cards in my hands were flying back and forth in front of me.  When the speech ended, the shaking stopped. I looked down at my legs. They had turned a deep red with a bluish cast. (p.3)

Epilepsy is ‘the most famous of all the shaking illnesses’, but Hustvedt’s convulsive illness differed in that it did not interrupt her awareness or speech. The medical center which treated her following the incident diagnosed vascular migraine syndrome. Hustvedt (who had suffered from migraines since childhood) reflected:

Whatever had happened to me, whatever name could be assigned to my affliction, my strange seizure must have had an emotional component that was somehow connected to my father. (p.7).

To make sense of the condition, Hustvedt (who experienced further episodes) embarked on a journey through neurology, psychiatry, and psychoanalysis. What strikes me about Hustvedt’s carefully researched account is the close link it makes between migraine and epilepsy. I began the book in a quest to understand my daughter’s migraines but kept stumbling into my shaking son. Also striking is the possibility that the emotions (specifically empathy) play in role in both conditions. 

The nervous overload which triggers migraine attacks and convulsions, it is suggested, could arise from ‘excessive empathy’. Through this lens, a migraine attack or epileptic seizure may be the result of a sufferer identifying too closely with the experience of others. We might describe this as being ‘over-sensitive’ to the feelings of others or (more positively) as emotional intuition. Could it be the case that an awareness of the emotional state of others (in a family, social or professional environment) may lead some people to experience a migraine or seizure?  Thinking about the stories in Hustvedt’s book, and my observations of my children and colleagues, I wouldn’t rule out the possibility.

Autistic people, we are sometimes told, are not capable of empathy, but this is an increasingly discredited narrative and one which I have countered in several posts. Now, when I think back to the pandemic years, it strikes me as quite plausible that Dylan (without language or the capacity to comprehend events) relied on his emotional antennae to process what was happening at the time. Although we tried to conceal our anxiety and uncertainty from him, more than likely Dylan will have picked this up from those around him.

Best try to be a zen mum, then 🙂

Notes:

Siri Hustvedt, The Shaking Woman or A History of my Nerves (Hodder & Stoughton, 2011)

Sorry Is Not The Hardest Word

With the removal of coronavirus restrictions, Dylan is getting back to some of his pre-pandemic activities and his preferred version of autism-friendly social distancing. While this helps alleviate some of the anxiety he experienced during lockdowns, life with Dylan will never be incident-free.  In this post I reflect on some learning from a couple of recent events.

Scripting

I’ve always prompted Dylan to verbalise key words in response to specific social situations.  ‘Say Please Dylan’.  ‘Dylan, can you say Hello?’  ‘Say Thank You Dylan’.  ‘Dylan,  say Bye Bye’. ‘Night Night, Dylan. Can you say Night Night?’ Dylan will sometimes produce one of these phrases spontaneously but usually they have to be scripted for him. In this way I scaffold the development of Dylan’s social as well as language skills, nudging him to respond appropriately to social cues. 

Dylan also has scripts which he uses unprompted, not in response to a specific situation but in order to initiate interaction or manage anxiety. One simple script is:

‘Hey!’

‘Back’

This has no meaning in itself but Dylan started to use it as a script after he slapped me on the back one day (when I wasn’t expecting it) and I reacted with a spontaneous ‘hey! That’s my back’.  Dylan enjoyed the reaction from me and now demands that I respond with ‘back’ whenever he says ‘hey!’. Another script involves Dylan saying ‘Baby wears a nappy’. Dylan likes people to say this with him or echo it as a ‘call and response’ text. It seems to amuse him (Dylan is still at the stage when bottoms and farts are funny) but also calms him down if he is feeling anxious. 

Sorry

These cases of scripting are fairly straightforward.  A more complicated example is my attempt to scaffold the word ‘sorry’ for Dylan. This is challenging not only because it’s difficult to predict the need to say sorry, but because it involves an understanding of cause and effect (the impact of our actions) empathy (how our actions make another person feel) and remorse (regret for our actions). It could be argued that adults with autism who lack capacity are incapable of understanding these concepts and thus are unable to offer a meaningful apology. Nonetheless, I script the word for Dylan:

Dylan don’t break the CD. That makes mummy sad. Say sorry.

Dylan look at all this water! Can you say sorry?  Now help me mop up.

Dylan that hurt. What do you say?

Sometimes, when I’ve been demanding an apology from Dylan in public or at his care home, I have sensed sceptical (even disapproving) eyes upon me.  Why is she bothering with that? Why get him to parrot back a word he clearly doesn’t understand? How ridiculous. 

I’ve persisted with it because learning abstract information (such as formulae and foreign languages) involves recitation and rehearsal followed by appropriate retrieval and application. In a sense, Dylan is a foreign language learner, needing to absorb abstract knowledge which might not always make sense to him but which he needs to produce if he is to assimilate the culture. Scripting, I have told myself,  offers a useful way of supporting this process of recitation, rehearsal and retrieval.

Of course, I’ve had my doubts.  There are times when Dylan has produced ‘sorry’ on demand with such a smile on his face or look in his eye that I have wondered whether he has any understanding at all (or perhaps too much). But something happened recently which has given me confidence that it is indeed worthwhile.

Remorse

Dylan was at home one weekend, happy enough but tight as a  spring, pinballing around the house. ‘Slow down Dylan’ I shouted as I heard him clattering on the stairs, taking three steps at a time in his long stride, hooting like an owl. I was sweeping the fire out downstairs, preparing for our Saturday evening.  Then, suddenly, a bang and a crash and a crack sent me running to investigate…

We live in a tall, narrow house with two staircases.  At the foot of the first flight of stairs lay a picture that Dylan must have caught and knocked off the wall.  Dylan loves the pictures in our house and has fantastic spatial awareness, usually negotiating furnishings and fittings like a long-eared bat.  But on this particular evening Dylan’s sonar had misfired and the result was a frame of cracked (but fortunately not shattered) glass.

The picture is a block print my daughter made at primary school.  I want to say that she did it at infant school but that seems unlikely so perhaps it was junior school. Either way, she was at the age when artwork produced at school would usually be displayed at home for only a limited period.  But I have kept this picture on a wall  for over 20 years and cannot imagine life without it. As well as loving the colour and movement in the print, I adore the title:  Big Searches for Happiness. Some days I  imagine ‘Big’ is the name of the elephant and some days a description of the elephant’s search. I love that ambiguity.

Although the glass is easily replaced I was sad that it had broken and a little unsettled at the thought of how much worse the accident might have been. Look Dylan, I said, you’ve broken sister’s picture.  I asked you to slow down. Please go to your room.  I don’t often ask Dylan to go to his room but a strategic time out can be good for us both.  It’s not a punishment in that Dylan enjoys spending time in his room and has access to his iPad and books. I’ve never been sure whether he understands being asked to go to his room as a consequence, but it is a process he recognises and accepts. 

Usually, I go and fetch Dylan after a short time out. I started cooking. Fifteen minutes later all was quiet. Dylan was probably absorbed in something, I decided. But then suddenly he appeared – of his own volition – at the entrance to the kitchen. Dylan looked straight at me: ‘Sorry’, he said. I was speechless.  Not only had Dylan demonstrated awareness of the impact of his behaviour, he had worked this out in a period of solitary reflection, suggesting a level of understanding that is not always evident from an immediate response. Could all these years of scripting ‘sorry’ have ended in genuine remorse?

Sorry By Any Other Word

Sometimes it can feel as if the staffing situation at Dylan’s home is more challenging now than it was during the height of the pandemic. Although some care workers had to self-isolate during lockdowns, I don’t recall significant staff shortages. The Omicron mutation may be less deadly than previous variants, and resistance in the community higher, but the spread of the virus through the population has had a devastating impact on public and social services.

One weekend in January I was asked if I could keep Dylan at home for an extra night as only two members of staff were available for the Sunday evening shift. Hindsight is a marvellous thing but, with its benefit, I wonder why I didn’t remember that on the couple of occasions Dylan had stayed at home on a Sunday night previously, there had been ‘incidents’ when he returned to the care home on the Monday. I had experienced it as unsettling too, I reflected at the time. I’d had to write the day off. If I found the change in routine so disruptive, no wonder Dylan struggled. But this slipped my mind when I was asked if I could keep Dylan at home that Sunday night in January.

Arriving at the care home the next morning,  I didn’t realise how unsettled Dylan was or detect that he was becoming anxious. And because I missed the signs, I didn’t react quickly enough to prevent him from hurting a member of staff who had come to greet us. This is not something Dylan does on a regular basis, but he can bite and scratch if he becomes upset. I have had my ears pulled in the past, but not been bitten.  This time, however, as I tried to separate Dylan from the care worker, my little finger got caught between his teeth.

Although my injury was relatively minor it was painful and a shock. I had been told about similar incidents but this was the first one I’d witnessed. How to react?  My gut response was that ‘sorry’ was inadequate.  It might be appropriate if we spill something or hurt someone’s feelings, but to bite someone then say ‘sorry’ just didn’t seem right. It’s not how things work.  Having said that, Dylan’s cognitive understanding is akin to a child of five. At that age, scratches and bites can still happen (indeed I recall two biters in my daughter’s Year 2 class) and in those situations we would expect an apology. 

Look Dylan, I said, showing him my bitten finger. You’ve hurt mummy. Say Sorry.  

The care worker had been replaced by another but I made some general observation about ‘not hurting people’. Even as I said this, I felt the inadequacy of my words.  What do you do? It’s so hard to know what to do, I said to a member of staff. That’s a parent’s perspective, of course; care home staff are used to dealing with such incidents and are trained to respond. I decided to leave them to it…

In the days after the incident I wondered whether it would have an impact on my relationship with Dylan. Having bitten me once (even by accident) would he be more likely to do it again? Would the possibility cause me to lose my confidence when caring for Dylan?  The care home manager encouraged me to put the incident behind me and to continue as before. Dylan would probably have forgotten all about it…

Except, of course, that Dylan doesn’t forget. The first thing he did the next time he saw me was to inspect my little finger.  ‘Finger’ he said. I rolled my eyes at the care worker.  How should I respond to this?  Before I could decide, Dylan started laughing; his mischievous laugh, eyes sparkling and crinkling, head thrown back. I ignored him. I wasn’t going to encourage that, I thought to myself. But Dylan hasn’t needed any encouragement. He has continued to shout ‘finger’ at me every time we see each other. He holds my little finger and roars with laughter.

It’s nerves of course.  Nervous laughter.  Dylan knows that what he did was wrong.  Just as Dylan thought about breaking the picture frame before coming to say sorry, so he seems to have thought about hurting my finger and is (in his own way) expressing remorse. When he asks to see my finger, Dylan is demonstrating his awareness of cause and effect.  When he looks at me as he inspects it, he seems to understand that he hurt me. And that inappropriate laughter is, I tell myself, Dylan’s way of processing the complex feelings which are part of remorse. Just as a rose by any other name would smell as sweet, a laughing ‘finger’ can be as acceptable as ‘sorry’.

 

Canaries, Covid and Christmas

I’m happy to report that Dylan has continued seizure-free. This suggests the medication he has been prescribed is a good starting point for managing the epilepsy. Equally, the absence of episodes could be linked to the fact that Dylan has been able to resume some of his regular activities. Certainly, he seems to be less stressed than he was a year ago. In this blog I share some Christmas updates and reflect on the continuing impact of coronavirus on Dylan.

Canaries

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.  

Dylan has no ‘filter’ so if he finds an environment uncomfortable or threatening he will express his feelings through behaviours ranging from mild (jumping and pacing), to moderate (smashing or ripping) or extreme (hurting himself or others). Those of us who are not autistic and learning disabled know that it is not acceptable to bite someone or smash crockery but it doesn’t mean we experience the world as any less stressful than Dylan. I’d hazard I’m not alone in having felt like smashing a few plates over the last couple of years. 

Living in the age of pandemic will be taking a toll on all of us. Observing Dylan’s unfiltered physical and emotional reactions to  the environment leads me to reflect on the impact of managing our stress and anxiety through internalising rather than externalising behaviours. Perhaps someone should set up jumping, tearing and plate-smashing arenas where we can self-regulate as Dylan does.

Testing Times

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. 

On the run-up to the performance all seemed well so we included it on Dylan’s programme and allowed him to feel the anticipation he experiences so intensely.  To my dismay, just days before Dylan was due to attend the show, new regulations meant that all ticket holders would have to provide proof of C-19 vaccination or a negative Lateral Flow Test (LFT).  Dylan has refused all attempts at vaccination and we had never attempted to test him for C-19, assuming he would not consent to a process which is physically invasive and can be experienced as distressing. I was beside myself.  What to do?  I dreaded the meltdown that would ensue if I told Dylan that Disney-on-Ice was ‘closed’ after all.

I received daily texts from the venue reminding ticket-holders of the requirement to provide proof of Covid-19 status and including additional guidelines such as the need for an LFT to have been reported and notified to a mobile phone. A test kit showing a negative result would not be acceptable. Part of me was concerned that this new world was one from which Dylan (and those like him) would be excluded. Having spent the last few months returning to his regular activities, would Dylan now find himself locked out of some of the things he likes to do because his disability means he can’t provide the necessary documentation? The other part of me was determined to get him  in. 

The only option seemed to be to persuade Dylan to cooperate with an LFT. So,  a week before the event I got Dylan to watch me testing myself and to copy everything I did.  To my surprise he was quite comfortable swabbing the back of his throat – more reluctant to insert the swab in his nose but able to do enough to get a valid reading. This was an exciting breakthrough. If we could test Dylan regularly this would not only open up opportunities for activities but enable informed decisions about managing Dylan’s health care.

On the day of the performance I was nervous about whether Dylan would be willing to take a test for a second time but he cooperated beautifully. This was not the end of my anxiety about getting Dylan into Disney-on-Ice that evening, however. Having reported Dylan’s negative result  in the afternoon, it had still not been notified to my phone by the time of the show. I tried reporting again, and the care home submitted an additional report, but still nothing.  I was a bag of nerves, checking my phone and thinking how terrible it would be if having encouraged Dylan to cooperate with the testing process he was denied admission. To my huge relief, however, Covid-19 status wasn’t checked at the gates that evening. 

Notification of Dylan’s test result was finally delivered to my phone five hours after I reported.  I guess on a Friday night the system was log-jammed with people like us, needing proof of a negative LFT. The stress and anxiety I experienced getting Dylan into the Arena were worth it, however.  Dylan spent the performance on the edge of his seat, clapping enthusiastically (in appropriate places) especially for his beloved Ariel and the clock and candlestick in Beauty and the Beast.  It was lovely to see him so happy. It’s great that we can now test Dylan regularly and the experience has reminded me not to assume that Dylan won’t do something until I’ve tried everything, including authentic motivators such as admission to Disney-on-Ice.

Back to the Moon

Dylan has continued to enjoy the resumption of his overnight stays at the moon (aka Premier Inn). One of the benefits of my having retired is that I now have the flexibility to support Dylan during the week as well as at weekends. This means I can look for the cheapest night on offer at his beloved ‘moon hotels’ instead of having to pay high rates at peak times. The savings are so dramatic I’ve decided it is perfectly reasonable for Dylan to make a trip to a moon once a month.

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).

For December I had booked a stay in one of the Premier Inns in Chester, to coincide with a visit to see the Christmas Lanterns at Chester Zoo. Storm Arwen scuppered our plans, however, with the Zoo having to close its gates in order to clear the debris and the Pass over the Pennines too treacherous to risk. I figured Dylan would cope with the cancellation of the Zoo trip but not with the disappointment of no moon.  In a moment of inspiration I booked a night at our local Premier Inn as replacement.  It’s a high-rise hotel which we drive-by every week and which Dylan has rubbernecked for years: ‘moon, moon’ he shouts.  The storm might have interrupted travel but it wouldn’t stop us walking three miles …

Dylan and I had a marvellous night. I had asked to be allocated a room on the top floor. Dylan was mesmerised by the view and enjoyed picking out familiar places.  We spent an evening being tourists in our home city, riding the Christmas carousel and dining out. What I learned from this is that the highlight of our trips for Dylan is staying at a moon hotel – he’s as happy three miles as 103 miles away from home. Still, I re-booked the Chester Lanterns after the storm had passed: two moons in December for Dylan!

First Christmas 

After Dylan helped me decorate our Christmas tree one weekend it occurred to me he would probably enjoy decorating his own flat. Any 27-year old spending their first Christmas in their own place would surely love that. Jay, who coordinates the social enterprise at Dylan’s residential home, supported Dylan to choose a tree and make his own decorations and trimmings for the walls. Dylan’s flat looks fabulous.  I especially like the paper chains. This is the sort of thing about Dylan’s life which makes me smile.

Dylan came home for the Christmas holiday.  I decided not to take him to visit my Dad, who isn’t well, but we saw my sister and enjoyed winter walks, good food and favourite films. 

Dylan made the wreath for our door and helped to decorate the Christmas Cake. The Poinsettia was his Christmas gift to me.

Another Covid Year

As the year turns, my concern for the future is not so much the threat of the virus to Dylan as its impact on his quality of life. Dylan is young and fit and if he does contract C-19 there is every reason to believe he would cope with the infection.  The current regulations around testing and isolation, however, are causing chronic staff shortages in the care sector, including at Dylan’s setting. This is a situation which poses a range of challenges and risks for staff and residents, especially in the context of adults with intellectual disability and autism. 

By way of illustration, some of the consequences of staff shortages for Dylan include the cancellation of trips and activities; inability to support with some personal care routines (such as shaving); reduction of supervision at key times of day; and the need for Dylan to spend additional nights with me. Fortunately, I am able to support with this (again, thanks to my having retired) but it’s not a satisfactory or sustainable solution to caring for a vulnerable adult with complex needs. Dylan and other adults like him require high levels of staffing in order to maintain the routines and activities which promote their health and well-being, particularly in relation to managing anxiety. I fear that the current situation leaves Dylan vulnerable to stress and therefore at risk of further epileptic episodes.

I suspect the issue of staffing in care homes is going to be a key challenge in 2022. While the regulations around the management of C-19 is creating the current crisis in staffing, the reality is that it has always been difficult to recruit and retain care workers. If the present situation leads to a review of employment pay and conditions in the care sector, then that will be a silver lining from yet another Covid cloud. Here’s hoping for better times ahead.

Thank you for following our blog in 2021

 Health and Happiness in 2022

Family Lockdown: Dylan breaks the rules

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…

22^nd 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 26^th 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.

Reservoir

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.

Matriarch

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.

Dylan Remembering

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.’

 Healing Dylan

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!

Dylan’s Rainbow: Crock of Gold or Empty Promise?

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.

Coronavirus and Capacity

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.

Fortunately, all is well at Dylan’s setting; no one has contracted the virus and the staff are all well and still at work. It is not inevitable, of course, that if a resident or staff member catches the virus they will spread it to others in their care bubble. There are processes (such as testing and using appropriate Personal Protective Equipment) that are designed to prevent this from happening. There’s been a lot of discussion in the media about the shortage of tests and PPE but there are places where supplies are getting through as they should which, happily, is the case at Dylan’s care home.

Even so, it is challenging to provide care for someone with AutID during a pandemic. Those who care for Dylan have to keep him safe while protecting themselves and others.  This isn’t easy, even with PPE and full access to tests, because of Dylan’s lack of understanding of social distancing and his inability to protect himself or show consideration for others. Added to this, some people with AutID won’t accept the preventative care and monitoring that are so important during a pandemic.

How do you protect someone with AutID?

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.

Fortunately, Dylan is quite used to people wearing aprons as this is part of the routine he follows for his social enterprise activity.  I’ve also recently managed to persuade Dylan to wear protective gloves when we are out in the community.  The first time I wore some I offered a pair to Dylan.  He wasn’t interested and pushed them away. I kept mine on and put the spare pair in the side pocket of my backpack.  To my surprise, within half an hour of our walk Dylan pulled the gloves out of my pack and put them on.  This is the first time I’m aware of Dylan copying behaviour I’m modelling which feels like a real breakthrough. It doesn’t take Dylan long to adapt to something once he’s taken the plunge: the next time we went walking Dylan expertly showed me how to blow into a glove before putting it on.

Monitoring Dylan is a little more challenging.  Staff are taking the temperature of residents on a daily basis but Dylan won’t allow this.  The only way I managed to get a temperature reading from Dylan as a child was with a Headscan thermometer.  There are none to be found at the moment but I keep looking. Taking a temperature reading could be important for monitoring Dylan’s health as he has limited strategies for communicating how he feels.

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 warns that the presentation of coronavirus among people with a learning disability ‘may be different from that for people without a learning disability’.  In some cases, the guidance notes, frontline staff will need to understand behavioural responses to pain such as laughing, self-harm or becoming withdrawn. It’s good to see these examples in the guidance and to read the advice to clinicians to listen to the family or carer as ‘They know the person who is unwell best.’

How do you treat someone with AutID?

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.

I heard recently that someone with AutID may be accompanied to hospital by one other person (a parent or carer). I found this reassuring as previously it had been unclear and the cause of much concern.  Anyone caring for a child or adult with AutID would probably agree that the idea of them being alone in a hospital  doesn’t bear thinking about. ‘You cannot let that happen, mum’, my daughter told me.  ‘Promise me you won’t let that happen’. I have had to think through some difficult (almost unimaginable) scenarios as the parent of  a vulnerable adult. Sometimes there is a flash of intuition which causes me to try to extract promises from others.  I telephoned Dylan’s care home manager. ‘Please’, I said ‘Please promise me you will not let Dylan go to hospital alone if he becomes ill.’

For Dylan, and I suspect for many adults with AutID, hospital-based testing and treatment (from pain relief through to ventilation) would necessitate restraint, sedation and inconceivable distress. This is such a difficult possibility to consider, the only way of coping is to focus on keeping Dylan safe at home. Recently, listening to the latest bulletin about testing for coronavirus in care homes, I realised this was not necessarily a good thing, from Dylan’s  perspective. The antibody test for coronavirus is a blood test and the test for COVID-19 a nose swab.  Both procedures would cause Dylan enormous distress and require restraint and sedation. I telephoned Dylan’s care home manager.  ‘I don’t want Dylan to be tested’, I said,  ‘Please tell me he won’t be tested’.

Fortunately, everyone involved in Dylan’s care knows him well enough to agree about such things. There is no plan to test Dylan for coronavirus as long as he is symptom-free or managing his symptoms.  If he becomes ill, we have a quarantine plan that would allow Dylan to continue to follow his routine as much as possible with minimum disruption. I find it very reassuring to have conversations about such things and to have these plans in place.

 Dylan’s Rainbow

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.

One day, while out for a walk with Dylan, I pulled back myself. Half way around our planned route, we were taking a break. Suddenly, Dylan pushed his water bottle against my mouth. I flinched, pushed it away.  I couldn’t believe it. What had been the point of my scarf and careful distance?  If Dylan was carrying the virus, he had now certainly passed it to me.  Then I saw Dylan’s face, looking dejected.  Any other day I would have been celebrating his generous gesture.  I had forgotten my water bottle that day and Dylan was simply trying to share what he had with me.  Overwhelmed by a bittersweet mix of sadness and joy, I praised Dylan for this suddenly (confusingly) unwelcome social act.

Perhaps one of the hardest things to consider is something happening to me. Statistically I’m far more vulnerable to the virus than Dylan. The section in the NHS guidance about the importance of listening to parents/carers ends with a warning to ‘remember the carer they  come in with may not be their usual carer at this unusual time’. I read the sentence twice, turning the various scenarios over in my head. I telephoned the manager of Dylan’s home: ‘if I become ill and can’t look after Dylan…’ I began.  Next,  I telephoned my daughter: ‘If anything happens to me…’ I began.  ‘Oh mum’,  she said, ‘don’t’.  But it is reassuring to have such conversations; now, more than ever, we need to build circles of support around our family members.

Dylan has been helping to make a rainbow of thanks for everyone who supports him at the care home. It’s been great to see such support for the NHS and care sector in recent weeks; the rainbows and clapping have certainly captured the public imagination . This grim crisis has shone a light on care workers, in particular, and helped to build more understanding and respect for their role. Those who work in or use the care sector have complained about low pay and poor conditions for a long time. Surely supporting the most vulnerable members of society – the elderly and disabled – should be work that is most valued by society, not unacknowledged and underpaid?   Maybe the crock of gold at the end of the rainbow is that coronavirus will help us re-evaluate our priorities, as a society?

Where does it End?

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 25^th March 2020 –  are a cause for concern.

The Coronavirus Act suspends the duties of Local Authorities (under the Care Act 2014) to meet the eligible needs of disabled people and their carers (Sections 18 and 20). Under the Act, Local Authorities only have to provide care if not to do so would breach the European Convention of Human Rights (ECHR).  As access to care and support is not a human right under the ECHR, this opens the door for Local Authorities to withdraw health and social care funding from disabled adults. Other provisions in the Act allow for a delay in carrying out assessments for eligibility for NHS continuing care. How could I not be made anxious by the introduction of this legislation, given that Dylan depends on such funding?

You might say  it’s cynical of me to suggest that the Coronavirus Act could pave the way for the removal of health and social care funding from adults with autism and intellectual disability. However, spending priorities will need to be reorganised, given the scale of the economic collapse, and it’s not inconceivable that removing the obligation on Local Authorities to provide health and social care will be part of the recovery plan. If, after all the rainbows and the clapping, we look to the most vulnerable in society to pick up the bill, that won’t be a crock of gold but an empty promise.

 

Key Document:

NHS.  Mental health, learning disabilities and autism:  Guidance.  Coronavirus, COVID-19  (25 March 2020, Updated 9 April, 2020)

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0074-MHLDA-Covid-19-Guidance-Workforce-final-v1-1.pdf