I haven’t updated Dylan’s blog for a while. All has not been well but I haven’t felt able to write about it because I’ve been struggling to make sense of the situation. While there are still plenty of unanswered questions, recent developments shed light on some of the challenges of the last few months. As you read this account, those of you familiar with the terrain will no doubt recognise the landmarks in Dylan’s story much earlier than I did.
Looking back, I think that the last time Dylan was happy was August 2020, during a holiday in the Lake District. Even with social distancing measures in place, and some necessary adjustments that must have seemed puzzling to Dylan, he was his joyous, passionate and energetic self that holiday. In the autumn after that trip, things changed.
When Dylan is distressed he tends to shred his belongings, starting with schedules and books before moving onto CDs, DVDs and ultimately clothes. The ripping behaviour seems to be an attempt to regulate his emotions, i.e. it is a way of releasing his frustration and anxiety, particularly when we haven’t understood his attempts to communicate. We assume this is the case with his other behaviours: jumping, flooding, urinating and biting. When even this fails, Dylan hurts himself, scratching his arms and body and scraping his knuckles.
In the autumn, there were reports of Dylan engaging in all of these behaviours at the care home. This was distressing but (I told myself) understandable. The situation was frustrating. Dylan’s daily activities were restricted by Covid-19 regulations. There were staff changes which meant Dylan’s attempts to communicate might not always be understood. On top of this, building work on new accommodation for Dylan (designed to relieve his stress at living in proximity to other residents) had been suspended. The behaviours would decrease, I reassured myself, once these temporary problems had been resolved.
In November, Dylan had to self-isolate as he had been in contact with a member of staff who had tested positive for C-19. This meant he missed his regular weekend visit home. I was concerned about Dylan as there had been multiple reports of incidents that week. I became increasingly anxious, the following week, when incidents continued, with a new behaviour added. Staff had noticed Dylan had a sore tongue. They wondered if he had been picking at or biting it. Really? Would Dylan injure his own tongue? What would it take for someone to do that? How distressed must he be if he needed to do this to numb the pain? I started to wonder if the problem was the pandemic, or if it could be something else.
Christmas at home was quiet but I became increasingly concerned about Dylan during January. There were reports of more incidents at the care home and, as well as the usual behaviours, concerns that Dylan wasn’t getting up in the morning. Towards the end of the month I had to work one weekend so Dylan wasn’t able to make his usual visit home. I was shocked when I collected Dylan the following weekend. I could see he was tired but he also seemed depressed. Dylan hardly seemed to recognise me and to care little about going home. I watched Dylan in my rear-view mirror as I drove to a valley where I had planned a picnic and walk. There was something not right. When we arrived, Dylan got out of the car and started leaping in the air, his face twisted, as if in pain.
When I managed to get Dylan back into the car, I decided it was time to act. Dylan was in distress and I needed to respond. I resolved that I would bring Dylan home to live with me for a while. The home visits seemed to be good for Dylan. I rarely witnessed any behaviours at home and on the infrequent occasions I didn’t have Dylan at home for the weekend, the incidents increased. Perhaps the care home environment was just too stressful for him during lockdown. I could look after Dylan until his new accommodation was ready.
That evening, Dylan seemed tired but relaxed. At some point he went upstairs to his room. All was quiet. No jumping or sign of distress. A little later Dylan appeared at the foot of the stairs, staring at me. What’s that on your cheek, Dylan I asked? It was dried blood. Dylan regularly has nose bleeds but he usually comes to find me for help. As he hadn’t, I assumed it hadn’t been very serious. When I went upstairs with Dylan, however, I found a pool of blood on his bed. How odd, I thought. Dylan watched while I stripped the bed. There was so much blood I had to throw the quilt away. I thought again how strange it was that Dylan hadn’t come to find me, and how odd that the blood was pooled rather than smeared. I looked up his nose and into his ears but couldn’t see anything amiss.
Next morning, at breakfast, Dylan showed me his tongue and said ‘ooh’. It was badly bruised. Could the blood have come from his tongue? I struggled to make sense of what I was seeing. Is this what staff had noticed in November? Did Dylan do this to himself while I was downstairs the previous evening? Surely not? In discussion with the care home manager, the possibility of epilepsy was raised. As I worked through online training materials (in case it was) I felt terrible about all the things I had done wrong. Because I hadn’t realised Dylan may have had a seizure I didn’t check him over or monitor him through the night. I hadn’t realised that he was tired and disoriented afterwards and that I needed to adjust my expectations and care. I shuddered at the thought of what I had not known and tried to be reassured by the fact that Dylan had survived my ignorance.
For a referral to the epilepsy clinic a seizure needs to have been witnessed. We were still in the realm of speculation with no actual evidence of what had happened. Meantime, the spike in incidents at the care home continued. I decided to go ahead and bring Dylan home, to see if I could settle him. So, during February and March, Dylan spent six weeks with me, with a day’s respite each week at the care home. I had assumed I would need to take time off work but I managed to keep things going by pre-recording lectures late at night and seeing students early in the morning, before Dylan woke up.
I was exhausted but knew that I had done the right thing and that it was worth the effort. In the time that Dylan was with me there were no incidents. Dylan and I found a rhythm which allowed me to work in the mornings before eating lunch together and heading out for a long walk in the afternoon and early evening. The physical activity and home environment seemed to do Dylan good and to remove his stress and anxiety. His distress must have been environmental, I decided. I was relieved to hear that Dylan’s new accommodation would be ready by Easter. Hopefully this would allow us to create a calm and homely environment for him. I also planned to suggest some changes to his programme of activities, based on my experience of having Dylan at home.
I felt cautiously optimistic when Dylan moved into his new accommodation in April. By reconfiguring a wing of the building where Dylan and another resident had neighbouring upstairs bedrooms and a shared downstairs area, two self-contained flats had been created. This would give both residents the separate space they needed and support their independent living skills. Dylan had the downstairs flat (because of his jumping) with a view of the garden and his own kitchen, lounge, bathroom and bedroom. The lounge had a new wooden floor and the new bathroom (cleverly created from a walk-in storage space where the Christmas decorations used to be stored) was not dissimilar to the bathrooms in Dylan’s beloved Premier Inn. The flat was a lovely light-filled space. If the environment had been a trigger for Dylan’s anxiety and distress, I told myself as I unpacked his things, the new accommodation should surely help to settle him?
But within a few days of moving in, there were reports of Dylan ripping, jumping, urinating and hurting staff and himself. I couldn’t keep up with the tearing of clothes. The plan not to lock Dylan’s cupboards (thinking that if we addressed the issues that Dylan was finding challenging, locks wouldn’t be needed) had to be abandoned as Dylan tore his way through a pile of new clothes and pyjamas. The situation was out of hand and I was close to despair.
I’ve always believed that behaviour is ‘functional’. So, what was Dylan trying to tell me? It couldn’t be the environment – Dylan’s new flat was lovely and gave him space and privacy. Was it his activities? I was concerned that these were scheduled around shift patterns which might not fit in with Dylan’s natural rhythms and with staff who might not enjoy supporting Dylan on long walks. Could staff be recruited who shared Dylan’s interests and who could work alternative shift patterns for Dylan? I was disappointed, but not surprised, when the answer was no. It is complex running a home for multiple residents and care cannot be individualised as much as I might like. Perhaps residential life just didn’t suit Dylan? Maybe what he needed was a supported living setting in the community, with a home-based care routine around his needs? I asked for a review meeting and spoke to Dylan’s care package manager about the possibility of looking for an alternative placement.
Then, in early June, I took a call late one evening. Dylan had had a seizure. This time, it had been witnessed by a staff member. As Dylan was unconscious for more than five minutes, paramedics had been called and were on their way. I tried to wait patiently for an update but it was too stressful. I got dressed, headed out into the night.
Dylan was conscious but sleepy and confused and his tongue was badly injured. The member of staff reported that Dylan went rigid just before it happened and that he fell from standing (Dylan is 6 feet tall and over 12 stones in weight), hitting his head on the hard kitchen floor. Later, the consultant would tell me that many epilepsy-related deaths are due to the fall, not the fit – that a key reason for controlling seizures is to prevent the falls.
The paramedics were (as everyone says) brilliant. They saw immediately that it was not in Dylan’s interests for them to follow strict protocol and take him to hospital – it was better if we did the necessary checks on Dylan through the night at the care home. So, I helped put Dylan to bed and did the first couple of half hourly checks myself, before realising that night staff were perfectly able to do this and that I should leave Dylan to their care and routines.
Driving home down country lanes and across the city I was struck by how many insomniacs there must be. I passed only a handful of cars on the road but my journey was lit by house windows all the way, like ships passing in the night. The world seemed out of kilter. Adrift. ‘The pandemic’, I thought to myself. I slowed down, took a deep breath.
A Different World
I’ve always been aware that living with autism is a lifelong journey, full of turns in the road and no arrivals – as soon as you’ve sorted one thing, another is on the horizon. I don’t think I’d ever considered that one of the bends in the road would lead me into a new country. And epilepsy does feel like a different world – one I find scarier than ‘autism’ or ‘learning disability’. Supporting Dylan could be challenging but I knew the terrain. Now, I am in a world of uncertainty. What is causing the seizures? When will the next one be? Will someone be there? Will Dylan be OK?
It is early days and perhaps there will be answers to some of these questions. Dylan has appointments booked for investigations, if he cooperates. I’m keeping an open mind because Dylan has already surprised me by accepting the epilepsy drug – the first time he has ever consented to take medicine. Is it because at some level he realises it will help him? Perhaps. More likely because it looks like sugar, sprinkled on his yoghurt. What else is new? Epilepsy bed mats and monitors. Anti-suffocation pillows. Hydration tablets. Suspension of swimming. Constant vigilance and observation. An epilepsy journal. Hopefully some patterns will emerge and help anticipate the next seizure. Already (building retrospective graphs) it is clear that Dylan’s behaviours increased in the week before the seizure incidents and continued to be high for a week afterwards, before falling.
How to make sense of this? Are the behaviours caused by the seizures or causing them? For months I have been trying to work out why Dylan has seemed so distressed and to suggest adjustments to his care (or even a change of placement) in response. Autism ‘experts’ tell us that behaviour is functional and that we need to consider it as an attempt to communicate. But what if the trigger for some of Dylan’s behaviours is neurological? That these are compulsive acts caused by seizure activity in his brain? The neurologist observed that Dylan may have been having minor background seizure activity for years, but at a level where we wouldn’t notice. The different world for Dylan, perhaps, is the development of the tonic clonic seizures which cause loss of consciousness and can result in injury.
I’m hoping the epilepsy drugs control Dylan’s seizures but I’m trying to figure out what else we could do to help. Stress would seem to be a factor. Levels of sleep, sugar, exercise, temperature and hydration are all under my forensic lens. I wish Dylan could tell us how he feels. But, as the neurologist reflected, making sense of Dylan’s behaviour may have been difficult before but it will be even more complex now, with epilepsy factored in. In the past I have referred to my quest to ‘see the world through Dylan’s eyes’. Having my eyesight tested recently, the optometrist reminded me that we see with our brain, not with our eyes. Indeed. Now, I am asking myself what the world looks like through Dylan’s brain.
The deep breath I took on the drive home turned out to be too late. A couple of weeks later I received a court summons for speeding that night (35 mph in a 30 mph-zone) as I result of which I was given penalty points and a £100 fine. Another early lesson from this is not to be so distracted by fear and anxiety that you take your eye (I mean brain) off the road.