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)

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

A Different World: Making Sense of Things

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.

November 2020

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.

January 2021

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.

At Home

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.

Home-from-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.  

June 2021

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. 

Postscript:

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.