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)

Death and The Queen: explaining to Dylan

Dylan and I were on the canal tow path near Bingley on Thursday 8^th September when my phone pinged. I had taken Dylan on an overnight visit to see the 3- and 5-Rise locks on the Leeds-Liverpool Canal. Dylan loves water and is fascinated by engineering so I figured the locks might capture his interest (and mine).  We had walked to Saltaire that morning and were heading back for a late lunch at the 5-Rise café when my phone interrupted us. 

‘Muss’, Dylan said, meaning ‘message’.  I have taught this word to Dylan since he developed camera phobia so I can reassure him I’m not getting the phone out to take a photograph if it pings.  ‘That’s right Dylan’, I said.  ‘A message. Let me see who it’s from’.  When I saw  my daughter’s name I decided I’d better open it. She knew I was away with Dylan and that I don’t use my phone while I’m with him. ‘It’s from sister’, I said to Dylan as I clicked on the message.  ‘Have you heard the news about the Queen?’, my daughter asked. 

*

One of the presenters of my favourite podcast happened to mention in a recent episode that she had received the news that Princess Diana had died two hours before it was made public. She had been due to present a radio programme that day and needed to be informed in order to prepare.  It had been strange, she reflected, living with the news of something so momentous while others were unaware the day was about to be shattered.  

Now, scanning the BBC news, I remembered that podcast. A debate about the energy crisis – the first substantive Commons business since the appointment of a new Prime Minister – had been interrupted by messages passed to leaders on both sides of the House. They had left the Chamber. Could the Queen already have died?   Were politicians and TV presenters running through protocol and procedure, perhaps, changing their clothes to black?  

After a life of service, lived in the public eye, there is an unusual privacy about the moment of a royal death. Although it hadn’t yet been reported, I felt sure the Queen was already dead. As I walked with Dylan along the tow path I wondered if it showed on my face. Members of the public sometimes look at us with curiosity, especially if Dylan is holding my hand, but passers-by seemed to be looking at me with concern, as if on the verge of asking if I was alright. I would make a terrible politician, I thought to myself. I can’t hide anything.

I can’t hide anything from Dylan, that’s for sure. It is said that people on the autistic spectrum lack empathy but my experience suggests the opposite may be the case.  Dylan is hyper-empathic and can detect the subtlest shifts in my emotional state. Now, Dylan tightened his grip on my arm. He was getting anxious, sensing that I was distracted. I felt a need to explain the situation to him but wasn’t sure what (if anything) I should say. 

*

It’s difficult to explain death to someone with a learning disability.  My dad passed away at the end of June and I still haven’t told Dylan. I decided that Dad’s death wouldn’t have a significant enough impact on Dylan’s life to justify attempting this. Dylan and my Dad weren’t close. Dad never visited Dylan at his care home so the only time they saw each other was when I took Dylan to visit Dad. Dylan seemed comfortable enough with this arrangement but Dad (and more to the point, his wife) didn’t find the visits easy. 

I would tell myself, sometimes, that it was Dad’s age that meant he struggled to understand that Dylan behaved as he did not because he was ‘naughty’ or had been badly brought up (by me) but because he was autistic. This is nonsense of course. It isn’t generational.  My mum was marvellous with Dylan. Some people are good at adapting to Dylan but others can’t help wanting Dylan to be something else. Dylan just didn’t fit into the model my dad and his wife had for how grandchildren should behave.

As dad got frailer I stopped taking Dylan to visit. Dylan is very strong and quite physical. He loves to shake hands, pumping a greeting with his iron grip. In the last year, Dad became too weak for me to risk Dylan unintentionally hurting him. Dad never asked about Dylan and, if Dylan ever thinks about my Dad, he doesn’t have the language to ask about him.

*

Living alongside Dylan it is easy for me to realise that language (by which I mean communication with words) is a privilege and not a right. Witnessing my son’s attempts to find alternative ways to communicate reminds me that I’m fortunate to be able to read, write, speak and understand the spoken word, but also makes me wonder whether I would be as inventive and resilient as Dylan, should I find myself suddenly without words.  

Since midsummer, when Dad died, I’ve found myself thinking about the impact on a person of the absence of words.  Death is a hard thing for us to talk about. In the last couple of months, when I’ve tried to write about it, I’ve found myself face-to-face with an unmarked page or crossings out. Death is hard to explain. Perhaps this is part of the reason I haven’t told Dylan his Granddad has died?  It is too difficult a concept for even me to grasp. 

*

Philosophers, psychologists and writers (Bertrand Russell, Lev Vygotsky and Oscar Wilde to give an example from each) have argued that our capacity for thought is related to language use. I don’t agree that the absence of language limits our thinking, necessarily, but as we tend to address complex ideas through language-based means, Dylan has had to find alternative ways to build his understanding of death. 

From experience, Dylan knows that death makes him want to walk very quickly with his eyes closed tightly, swinging his arms (small animal deaths we encounter in the countryside). From his films, Dylan quite possibly believes that after you have died you talk from the sky (Lion King). Also that death is beautiful and temporary, like a sleep, and involves glass and roses, a handsome prince on a horse and a kiss (Snow White). 

One of the beliefs about death which Dylan seems to have developed is that when people die we put them in photograph frames. I wasn’t aware of this seven years ago, when Dylan moved to his care home, so I put framed photos of family members in his new room. Dylan wouldn’t accept the photos of myself and my daughter, I was told.  He turned them face down or put them away in his drawer. Only the photo of my late mum was acceptable to him.  At the time I was  hurt but I subsequently realised that Dylan is uncomfortable with photos of any living person being on display.  [As I write this post I am wondering whether Dylan’s resistance to photography could be connected with his apparent beliefs about death].

Last week I sorted through photographs for a picture of dad to put in a photo frame I’d picked up in a charity shop. Perhaps when I find one I’ll be able to use it as a prop to explain  to  Dylan about Dad’s death. I don’t think I’ll be taking the same approach with the Queen, however. A jubilee crest on a kitsch mug is as much as I can cope with in the house 🙂

*

I tried really hard, when Dad died, not to let Dylan see that I was feeling sad. I wonder if perhaps I didn’t tell Dylan about Dad because I didn’t want Dylan to see my grief, rather than because I thought Dylan didn’t need to grieve himself?  Now, at the thought that the Queen might have died (or might it have been at the memory of Dad?) I found myself fighting back tears. Just how was I going to explain this to Dylan? I turned my face quickly away, quickened my step on the tow path.

Something that puzzled me after Dad died was that I couldn’t cry, even though I felt desperately sad. Equally puzzling was that, at the same time, I found myself crying at reports of the deaths of minor public figures who I’d never met and hadn’t even cared for, particularly. Why couldn’t I cry for dad but I could for these others?  

I’ve written elsewhere that Dylan doesn’t cry tears and have speculated about why this might be. Dylan can be wracked with physical emotion – his chest heaving with sobs and the air filled with his howl – but there are never tears. Perhaps deep grief wracks us dry, unable to cry?  I think Dylan understands that tears mean someone is feeling sad but I have no doubt that he is also capable of feeling my tearless grieving for my Dad.

*

I checked my phone again as we got to the locks.  No change. Even so, I could feel a tearing behind my eyes and a sense of being distracted.  Others would feel it too, I thought to myself, as the news developed and filtered through. Just how was I going to explain the show of public grief to Dylan?  I decided I couldn’t pretend anymore. I would have to try.

‘Mummy is feeling a bit sad because the Queen has died’, I said to Dylan. 

Here I was, suddenly, talking about death after I’d studiously avoided the subject in relation to Dad.  I watched Dylan trying to process what I was saying. I can see when Dylan is thinking.  He thinks with his eyes.  Now, they were flickering anxiously.

‘Don’t worry, Dylan’, I said.  ‘It’s OK. She was very old. It was time for her to die.’

Dylan looked unsure. Perhaps the fact the Queen wasn’t particularly meaningful to Dylan would mean it wouldn’t upset him, but I didn’t want to take the risk. What if it led Dylan to have difficult feelings about his beloved Gran or to worry about other people that he loves? These things will come to Dylan one day. Now wasn’t the time. I decided to reassure Dylan by looking forward instead. 

‘We are going to have a king now’,  I said.

‘ King’, Dylan repeated after me, his eyes smiling. ‘King’.

Selfie Sabotage: Dylan Develops Photo-Phobia

It didn’t take long, following Dylan’s autism diagnosis, for me to realise that visual images – photographs, symbols, videos – would play a central role in his life. One of my earliest memories of that time is of walking around the village where we lived, photographing places we visited to add to the communication book I was making. It was 1996 and Dylan had just turned two.  Digital photography and mobile phones had not yet landed.  I shot rolls and rolls of film in those early years and (with an industrial camera which made my shoulder ache) produced numerous home videos –  not to record, celebrate or share our lives, as is the case today, but as teaching resources for Dylan’s home education programme and communication aids to support our family life.

Such visual supports are helpful for any child who receives an autism diagnosis but for Dylan, who has remained non-verbal, they are essential. The visual world is Dylan’s language, his ‘mother tongue’. At 28 years old, Dylan has a vast visual vocabulary, supported by thousands of photographs taken over the course of his life. Dylan processes, organises and records visual information at astonishing speed. He can scan an environment and log it visually within minutes.  When Dylan is given his visual programme for the day, his eyes flick quickly through the images, absorbing the information.  If he encounters an unfamiliar symbol or photograph, he scrutinises it intently, looking for clues, before asking for more information or (sometimes) becoming anxious about what he doesn’t understand.

The photos developed from hundreds of rolls of analogue film have, of course, been superseded by digital images stored on various devices: computers, lap tops, iPads,  iPhone and USB sticks. These technological developments may not have been made with disabled people in mind but they have helped to meet Dylan’s needs as a non-verbal autistic man with an intellectual disability. In particular, phone-based photography has given Dylan access to a portable archive which he uses for a range of purposes. Dylan browses the photos on my phone to communicate, for personal pleasure and for reassurance. Sometimes, multiple functions are served at once; while having a drink in a pub, for example, Dylan will scroll through the images on my phone while I read, the pleasure and reassurance he finds in this activity punctuated by conversations about selected images.

Not only have these advances in photography helped me to create a visual archive for Dylan, they have enabled the production of instant images. Being able to record Dylan in the landscape and share this with him immediately has strengthened his sense of place and helped him to develop a sense of identity and belonging. This has been further helped by the ‘selfie’ option, which has allowed Dylan to locate himself in the landscape with others and has enabled him to take photographs himself, with minimum support. How marvellous that there have been all these developments in Dylan’s lifetime, I used to think to myself. Used to?  Yes, because this has all changed. Suddenly (I suspect) and recently (I think). Although I can’t be sure – maybe I only noticed suddenly and recently and it had been brewing a while?  I am having to re-think everything. This post is part of that process…

                                                                        *

My mobile phone is packed with photos, the vast majority involving Dylan in some way. They are records of places we have visited, mostly landscape but sometimes featuring one or both of us (sometimes ‘selfies’ but more often not) generally taken by me but a few by Dylan, my daughter or friends. The gallery is added to on a weekly basis, when Dylan comes for home visits, and more often during holidays and trips. But here’s a thing. The most recent photo of Dylan on my phone is a selfie of us at Cleethorpes, taken on New Year’s Day. Dylan has made numerous home visits, since then, and we have been on overnight trips and spent a week in Wales. But, except for one landscape shot taken in Wales on 21^st April, there is no record on my phone of these visits.

The photo in Wales (on the left) was taken to see if Dylan would allow me to use my camera phone after months of him objecting. How many months? At least five, maybe more. I can’t pinpoint exactly when it started. I wish I could because then I might be able to work out why. Looking back at the photos of Dylan on my phone immediately before New Year’s Day, he seems to be smiling and happy. There are fewer than in previous years, perhaps. Now, as I search my online records, I see that on 26^th December I reflected to friends that Dylan seemed to ‘have become camera shy’ and reported that I’d shaved him in case he disliked his full  beard. So, Dylan was already feeling uncomfortable about phone photographs in December? 

And now I think about it, perhaps that could explain the day I had to report an ‘incident’ during a home visit (such a rare occurrence that the care home manager commented to me that she was surprised to see the report). Dylan and I were completing a familiar and much-loved walk when he became distressed and started jumping wildly (one of Dylan’s anxiety behaviours) at the edge of a steep path. It was a difficult situation for me to manage and I was badly shaken, especially as I didn’t know what had triggered it. But now I remember that I had taken my phone out to photograph the valley. According to my diary that was 17^th October. Could Dylan really have been anxious about photos as long ago as that? How much discomfort might I have put him through before he managed to communicate this to me?

Now, because I’m alert to Dylan’s discomfort, he only has to say ‘no, no’ and wave his hand. I thought that I had always asked Dylan for his consent before taking his picture, but I realise now that I probably did this in the same way that I ask my dad or daughter for permission to photograph them. Dylan needs to be given more opportunity to communicate consent or refusal than a neurotypical person because he doesn’t have access to the usual strategies, such as spoken language. Obviously, since Dylan has refused to be photographed I’ve stopped sharing pictures online and I’ve been giving some thought to archival material (such as on this blog) and reflecting on ethical and other implications. However, I’m not convinced that whatever is underlying this is quite as straightforward for Dylan…

                                                                        *

Dylan’s current objection to photography goes beyond my taking his picture; he objects to my taking any photographs at all. There are only 16 shots In my mobile phone gallery since I photographed the two of us on New Year’s Day. With the exception of the photo in Wales, they were all taken when Dylan wasn’t with me. Even if I reassure Dylan that I am not going to take a picture of him, he still says ‘no, no’ and waves his hands if I get my phone out. Sometimes he tries to grab the phone from me and once or twice he has become distressed enough for this to threaten to lead to the jumping which signals anxiety. 

Obviously, this is a risk I have not been prepared to take for the sake of a photo of, for example, Devil’s Bridge at Pontarfynach. Our visit there at Easter was the highlight of Dylan’s holiday. Dylan was utterly transfixed by the chaos of water and stone and he lingered at the Punchbowl and viewing platforms on Jacob’s Ladder as long as I would let him.  Previously, Dylan would have wanted me to photograph this magical place so that he could return to images of it whenever he wanted. ‘Do you want me to take a photograph of the water for you, Dylan?’ ‘No, no, no’.  Of course, I could not risk Dylan jumping into the Mynach Falls. Serendipitously, on this occasion, a print of Devil’s Bridge was hanging in our holiday cottage and every evening Dylan would stand before it, entranced.  Since we returned from our holiday I have bought a copy of the print (Clever Girl) and a sister piece (Spring) by the same artist, Chloe Rodenhurst, so that Dylan can continue to enjoy the visual world that speaks so eloquently to him (if no longer via photographs).

I might not have risked photographing the Mynach Falls but I did conduct an experiment that week. One of the theories I’ve developed is that Dylan dislikes me using my phone rather than the phone camera. Could he be trying to sabotage my conversations with his sister? Maybe he doesn’t like the effect of speaker phone on language. Or perhaps Dylan resents any time I spend on my phone (checking for news and email) and wants my attention to himself. Quite right too. Or (a wilder hypothesis) could he have developed anxiety about my phone as a result of a specific incident?  Dylan may, for example, have made a connection between my mobile phone and a Lateral Flow Test he had to take for Disney on Ice (due to a problem with the notification).  That was in December which might fit with the Christmas/New Year dates (but wouldn’t explain the October incident I’ve recalled while writing this blog). To test whether Dylan’s protest is about my phone or my photography, I took my old digital camera on our trip to Wales.

I was able to take 14 photographs that week, including one of Dylan under the Jubilee Arch at Hafod (which I won’t share). I would say that Dylan wasn’t super relaxed but he gave consent and seemed happy enough. It was for this reason I attempted to take a photo with my mobile phone on 21^st April. Having used my Fujifilm all week, how would Dylan react to the iPhone? I took the shot but Dylan wasn’t at all happy about it and, given the terrain, I put my phone away. What do I surmise from this? It may be the phone, rather than the phone camera, which makes Dylan anxious, but I need more evidence. If it is the phone, then I have a not-insignificant problem. I need to be able to use my mobile in emergencies and for navigation. I should be able to take calls from friends and family if they need me. I have to be able to use digital apps (railcards for example) when we are in the community. And, importantly, I need to be able to record medical and other incidents for Dylan’s records. 

Recently, for example, Dylan sustained a cut on the head which I asked him if I could photograph with my phone. Dylan refused and the cut had to be photographed without Dylan’s consent by the care home. While not ideal, there will be other incidents and injuries, particularly given Dylan’s epilepsy, which need to be recorded in this way. I’m told that care home staff photograph Dylan using a variety of devices, including iPhones, but I don’t know whether this is with Dylan’s consent or if he has ever protested about it. Is it only my phone that Dylan objects to?  I need more information. Meantime, I am trying to stay alert and open enough to hear what it is Dylan is trying to communicate and work out why. I’d be glad to hear from anyone who has experienced anything similar or has new ideas and fresh eyes. 

Images:

The images of the mobile phone, roll of analogue film and view over Bradfield Valley are free stock. The images of Clever Girl and Spring are by the artist, Chloe Rodenhurst.The other images in the post are by me, except for the photo of me which was taken by a friend. That photo, and the photo of the ceiling fresco, were taken at the Watts Gallery at Compton in Surrey. The photo of Cleethorpes beach was taken on New Year’s Day with my mobile phone. The photos in Wales were taken at Easter and include the Gothic arch at Hafod (mobile), a waterfall at Hafod (digital camera) and a view of Aberystwyth (digital camera).

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

Lockdown: Creativity, Flexibility and Adjustment

My last post ended as lockdown began.  I returned Dylan to his care home after our trip to Durham, uncertain what the full implications might be but aware that Dylan’s life was about to change dramatically.

It was clear the rhythm of Dylan’s days  –  organised around an afternoon activity in the community – could not be maintained. The museums, galleries, country houses, cathedrals, sports venues, cinemas, cafes and pubs which Dylan regularly visits had closed. Even the country parks and community spaces were wrapped in sticky tape. How would Dylan cope?

There are ‘bigger’ worries than these of course. What if support staff at Dylan’s home got sick?  How would the home cope with significant absences? What if Dylan or one of the other residents got sick? How could Dylan be quarantined? With shortages in the shops, would the supply of food and essential goods to the home be maintained? And what about the supply of PPE?  It is the care home manager’s role to address these issues and plan for contingencies, of course, but parents still worry about them.

Then there are other,  potentially bigger, worries. The pandemic poses significant challenges in relation to the health care and medical treatment of autistic adults with intellectual disability. In the longer term, after the immediate crisis is over, it will raise difficult questions about the funding of care for vulnerable adults in the community. In a social and economic crisis, vulnerable members of society typically become more vulnerable.

In previous posts (here and here) I’ve reflected on the position of autistic children and adults caught up in war zones.  While writing those posts I tried to think deeply about the challenges of caring for a vulnerable family member at a time of chaos. Never did I imagine this particular scenario, however.  Nor did I consider something could happen that would make me feel as anxious for Dylan as I do now.

Dylan isn’t aware of any of this of course.  Ironically, while many people who wouldn’t have described themselves as suffering from anxiety are now experiencing it, Dylan (for whom anxiety is a core challenge) has no notion of this source of anxiety at least. For Dylan, the challenge of lockdown is simply the disruption to his routines and activities.

 Creative Lockdown

I will no doubt return to some of those ‘bigger’ issues in future posts. Today,  however, I want to celebrate the creative ways in which staff at Dylan’s care home have risen to the challenge of lockdown and the positive way in which Dylan has responded to it.  Here are ten things that have helped Dylan to live in this strange new world.

1. Disney +

The day after I had returned Dylan to his care home I saw an advert for the newly-released Disney streaming service. The timing felt serendipitous.  Although under normal circumstances we try to limit the time Dylan spends on his iPad, nothing about the current situation could be considered ‘normal’. The manager of the care home agreed it was a good idea to purchase a subscription for Dylan. So, on the first full day of lockdown I nervously made the two-hour round trip to the home, telling myself it was an essential journey and that I would find a way of explaining why if I was stopped.

When I arrived at the home I was struck by the calm, happy atmosphere. I’m not usually there during the week and Dylan isn’t used to me turning up unplanned.  I was therefore a little nervous about whether my visit would be disruptive. Dylan seemed surprised and pleased to see me but equally committed to continuing to follow the activities on his programme.  He was perfectly happy to leave me in his room, setting up a Disney+ account on his iPad, while he went off to water the plants in the garden with a member of staff.

I sat for a while in Dylan’s room thinking how fresh and clean it was and how happy the atmosphere in the home felt. This felt like a gift and I’ve kept it in my memory. Disney+ has also proved a huge hit with Dylan. Well worth the 60 quid.

2. Movie Afternoon

Dylan might have Disney movies streamed to his iPad, but you can’t beat a big screen, a squidgy sofa, a choice between popcorn, pizza or sweets and a bit of company.

3. Bake Off!

What is Dylan’s favourite thing to do after watching a movie? Oh yes.  That will be eating cake.  An afternoon Bake Off isn’t such a disappointing substitute for a trip to Magna.

4. If Dylan can’t go to the Slush, the Slush will come to Dylan

Dylan loves a Blue (as he calls slush puppies). He has amazing antennae for cafes, pubs and kiosks which sell them. Normally, one of Dylan’s weekly outings would include an opportunity for a Blue. How can we help Dylan to cope with lockdown? Dylan’s care home manager had the most amazing idea:  buy a slush machine for the home. Oh my!

5. Scooter Games

Dylan has always been good at physical activities. At school, he worked pretty much at age-appropriate levels  in PE (although he has little interest in team games). In particular, Dylan has fantastic balance.  From an early age Dylan has had a range of outdoor equipment, including a scooter which went with him when he moved to the care home three years ago (or is it nearly four?).  The staff noticed Dylan had outgrown the scooter and have bought a new one. Dylan is loving it, apparently, and choosing it independently, even when it isn’t on his programme.  I love that when it is a planned activity, staff have found a way of building in educational opportunities, such as a colour-matching task.

6. Picnics

Dylan loves eating al fresco. A key part of his regular activities involves packing his lunch box and enjoying this in community parks and picnic areas.  Fortunately, Dylan has been able to use the home’s outdoor areas to keep this routine going.  The generous grounds have proved to be essential for Dylan (and other residents) during lockdown. While they were always well used, they are now central to many activities. I can’t imagine how difficult lockdown must be for families who don’t have access to outdoor space.

7. Easter Eggs

An afternoon Easter Egg hunt in the garden (Dylan had no trouble finding the eggs).

8. Celebrating Achievements

Dylan’s ASDAN certificate, confirming his completion of a unit of work, arrived during lockdown. As the photo shows, staff celebrated with Dylan and treated him to a bowl of ice cream…

9. Letters Home

One morning I received a letter from Dylan in the post.  As well as being a great activity for Dylan to do during lockdown,  this is a reassuring gift for a parent to receive.

10. Go-Kart

Inspired by reports of Dylan’s scooter I asked friends for ideas for any other outdoor equipment I could get for Dylan.  There was a strong pitch for a Go-Kart and I managed to get this one delivered to the home this week.  I’m told that it is a big hit with Dylan!

Flexible Lockdown

As these activities illustrate, all is well at Dylan’s care home and staff and residents are doing fine.  Although Dylan seems to be enjoying the new activities, something else that has probably helped with lockdown is that his weekend visits home have continued.

I wasn’t sure whether the guidelines would permit this, initially, but following consultations with relevant agencies it was agreed that the clause relating to the support of a vulnerable adult allows for this. Dylan’s risk assessment and care plan note that if Dylan were not able to continue his home visits there would be a risk of heightened anxiety causing challenging behaviour and possible safeguarding issues.  Other than seeing Dylan at weekends I am self-isolating so am low risk to Dylan and I follow government guidelines while caring for him. Dylan and I are both well but if either of us did develop symptoms during a home visit I would keep Dylan with me rather than return him to his residential setting.

I am relieved that it is possible to build flexibility into the guidelines in this way.  Adults with autism and intellectual disability who live in care homes are vulnerable, but not necessarily in the way that elderly care home residents are. Dylan is physically strong but he is vulnerable psychologically and emotionally, at this time. Continuing to have contact with me and to maintain his regular visit home is critical to his health and well-being.

Dylan is having to adapt  to some changes, of course. We would have been on holiday in Cumbria this week without Coronavirus. Dylan has asked repeatedly about ‘bed’ and ‘sea’ and I have reassured him ‘soon’.  Rather than our usual trips out, we have been restricting ourselves to walks near Dylan’s home.  I  have been careful to plan routes which don’t take us past pubs or cafes so that the issue of them being closed doesn’t arise.  And as picnics are not allowed, we wait until after lunch for our trips out.

Even with these changes, Dylan seems happy at weekends. In fact, Dylan is coping brilliantly with the whole situation. Lockdown may even have brought some benefits, from Dylan’s perspective. He seems to be enjoying the opportunity to spend more time around the residential setting, for example. Perhaps going out into the community every day was tiring for him? Maybe, when this is all over, we can learn from this and make sure that Dylan has some days at the home as well as in the community.

Adjusted Lockdown

I was pleased to read the updated exercise guidelines for children and adults with autism and intellectual disability (see link below).   It is acknowledged that for some autistic people, exercising in their local area may not be comfortable or appropriate, particularly if changes have been made to a familiar landscape (such as routes taped off) or an area become busier. This is definitely the case in the area around my house where I’ve been reluctant to walk out with Dylan, given his tendency to try and shake hands with members of the public. I’ve since taken Dylan on a couple of walks which have involved a short drive. Both days, we didn’t see a soul.

This week the Government have announced a relaxation in the rules around exercise more generally, declaring that all members of the public are now able to drive outside their local area in order to take ‘a long walk’.  Presumably this is an attempt to reduce the numbers exercising in city parks. I will need to be prepared for things being a little busier this weekend…

Thanks to the wonderful staff at Dylan’s Home –
it’s been great to see care sector staff getting the recognition they deserve.

However you and your family are spending Lockdown,
 keep safe, stay well.

 

Useful Links:

This is an article written by Julian Norman (Barrister at Drystone Chambers) interpreting the Government guidelines on exercise in relation to queries from parents of children with SEND (published 30th March 2020). There is a useful example of an information card you can carry with you while out with your SEND family member.

https://www.linkedin.com/pulse/coronavirus-regulations-guide-exercise-send-parents-julian-norman/?fbclid=IwAR3r5YSiKkzl0AISDhaRAyyfV6-KzbYj0xo6XlcdVqrZb9Xmr5j9QHYBinQ

Here are Government FAQS (published 29th March 2020) on exercise. Point 15 specifically refers to children and adults with autism and intellectual disability.

https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do

New guidelines are being issued continuously so the above have already been superseded.

The Curious Case of Coco: Dylan and Dogs

After Dylan moved to residential care I told a friend I was thinking about getting a dog.

 What do you want to do that for? You’ve  just got your life back and you want to tie it down again? 

She wasn’t a dog owner herself and wasn’t sympathetic.

I get it.  You want something to care for, don’t you?  You don’t know what to do with yourself now Dylan has moved out.

It wasn’t that, I protested. It really wasn’t. My identity did not depend on looking after others.  People or animals. I just thought my lifestyle would suit a dog.

You mean so you have a dog to take on walks instead of Dylan?

 A bit harsh but probably on the nose. I backtracked with what nonchalance I could muster.

Well it’s not going to happen. Dylan’s going to be coming home at weekends.

Autism, Animals and Anxiety

The combination of a dog and Dylan is unthinkable.  While there are  moving ‘rescue narratives’ of therapy dogs who have transformed the lives of autistic children and adults, narratives of autism and dog anxiety are equally powerful. Dylan is absolutely terrified of dogs and I know from contact with other parents of autistic children he is not alone in this.

It isn’t just dogs, in truth.  Dylan isn’t fond of any small animal. He can walk through a field of sheep, cows or horses (I am the one anxiously clinging to Dylan’s arm in a field of cows). He also loves going to the zoo and spends long periods gazing at lions, giraffes and bears.  But cats, dogs, rabbits, guinea pigs, chickens, birds and butterflies he cannot tolerate.

Nevertheless, when the children were small we made a point of having family pets.  “At the very least”, I told my husband, “they teach children about death”.  This was a lesson my daughter duly learned when Dylan dropped her lead soldiers in the fish tank killing the fish (she insisted) from toxin or a blow to the head. Goldfish and Dylan were not a good combination, we realised, when he was caught with the school goldfish in his mouth. Family cats were in less danger from Dylan but provoked high alarm in him. Potter the rabbit (in an outside hutch) was barely tolerated. A dog, I maintained, was out of the question.

Friends with dogs suggested they bring their pooch to visit or that we join them for a walk. Too risky, I  contended. Encouraging Dylan to walk near a dog can be difficult if there is something about the dog which unnerves him. I’ve tried to find a pattern but I don’t think there is one.  At various times over the years I’ve had the idea that small dogs, black dogs and dogs with protruding muzzles (so you can see their teeth) can especially trigger Dylan. But I may be wrong. Every time I think I’ve established a ‘law of dogs’ to help me to manage Dylan’s anxiety, I discover an exception.

Worry, Worry, Worry

While the calmest of dogs is not enough for Dylan to unlearn fear, the thing that is guaranteed to send his anxiety sky high is an excitable dog. What Dylan cannot cope with is unpredictable behaviour. The reality is, however, that it is usually Dylan’s reactions to dogs which trigger their excitability, creating a situation where both Dylan and dog are leaping about, running in frantic circles, barking or shouting. ‘Worry, worry, worry’ Dylan yells repeatedly.  This is Dylan echoing back the final part of the phrase I say to him when we encounter a dog: ’It’s alright, Dylan. Don’t worry’.

It might be the case that I can’t help Dylan and that he doesn’t help himself but dog walkers don’t always help either. Some people realise quickly, through experience or intuition, that Dylan is anxious and that he has autism and/or learning disability. These dog owners do everything right, calling their dog to heel and leashing, holding or carrying the dog while Dylan walks past. Others, however, seem to have no grasp of the situation whatever.  A typical (unhelpful, infuriating) response is:  ‘Oh s/he’s alright. S/he won’t hurt you. S/he just wants to play’.

I know that dogs become part of the family for their owners but I am always amazed by the tendency of some people to treat their dogs as humans and afford them equal rights with Dylan. I suppose some animal rights activists might disagree but I am of the view that the needs of my anxious, autistic son to access the community safely should have priority over that of a dog’s. I know that most dog owners are responsible and supervise their animals in the community but it is the minority who don’t that helped to create and sustain Dylan’s fear of dogs.

It is not so much encounters in open land that I have in mind. I know that dogs need to have spaces where they can run freely and when I am supporting Dylan in such places I see it as my responsibility to anticipate and head off potential incidents.  This involves a range of strategies: pausing; changing course; calling Dylan to my arm; moving Dylan to my other arm; calling to the dog owner to alert them to the situation. And (not so effective) trying to soothe Dylan with “It’s alright Dylan. Don’t worry.”  These encounters I can usually manage (though they are wearing). The ones I find much harder to tolerate are dogs running free on beaches between months they are forbidden or on paths where notices clearly require them to be on leads.

Coco

But then, shortly before Dylan moved to residential care, Dylan had a curious encounter.

A young woman at a day placement Dylan attended before he moved to his care home had a dog called Coco.  The dog would come to meet the young woman at the end of the day so Dylan became familiar with Coco. Over time, Dylan was able to observer how Coco interacted with humans and he started to show an interest. Dylan’s support worker suggested we capitalise on this and see if Dylan might be encouraged to stroke Coco.  With the patient understanding of Coco’s owner, Dylan was eventually prepared to do this. Around this time Dylan moved to his care home and didn’t see Coco again.

Curiously, however, Dylan thinks he sees Coco constantly. When we are in the community Dylan shouts ‘Coco, Coco’ at every passing cockapoo. Dylan reliably identifies and responds to this particular breed.  Sometimes he wants to say hello. Once, I was convinced Dylan was mistaken and commented to the owner: ‘He’s only usually interested in cockapoos’.  But she is a cockapoo, the owner replied.  I’ve googled cockapoos and can find nothing in their profile which suggests the breed is particularly suited for people with anxiety so can only assume it was Dylan’s positive experience of Coco which made the difference.

Kizzy

The friend who questioned my reasons for wanting a dog, in the immediate aftermath of Dylan moving to residential care, was right to do so.  Since then I’ve realised that if I ever do get a dog it will need to be once I’ve retired; that  (never having owned one) I would need to do a lot of research;  and that Dylan would need careful introduction. Also, it would probably need to be a cockapoo called Coco.

In the meantime, I told myself recently, it felt a bit hard that I couldn’t have a pet, given that Dylan had moved out of the family home and only visited one night a week. Surely there was something I could do? Some balance to be struck between Dylan’s needs and mine?  I had ruled out a dog, but maybe a cat wasn’t out of the question.  I explained my situation to the local cat shelter and asked whether they had an older cat who would rather sleep than play.  A cat who wouldn’t behave unpredictably or try to interact with Dylan. A cat who wouldn’t mind curling up in a ball at weekends and sleeping through Dylan’s home visit …

Kizzy came to live with us at the end of last year. She is a 20 years old indoor cat whose preferred activity is sleeping on a lap, in a patch of sunlight or on a high platform. Dylan was alarmed initially, yelling worry, worry, worry on his visits.  Once he realised that Kizzy barely moves position, however, and has little  interest in him, Dylan calmed down.  Dylan is still nervous about Kizzy but he can tolerate being in the same room, at a distance, providing I am there to supervise.

Dylan would prefer that Kizzy wasn’t around but a slow old cat is infinitely preferable to Dylan than a youngster. From my perspective, however, the adoption has turned out to be less successful. It quickly  became apparent that Kizzy is not a well cat and a trip to the vets confirmed kidney disease. If my friend had been right in her observation that I just wanted something to care for I would perhaps feel better about the situation. As it is, I am trying to comfort myself that older pets also help adults to come to terms with death…

 

 

 

Images

Apart from the photo of Kizzy all images are sourced from the Internet and to the best of my knowledge are not copyright restricted.

About Time

Dylan in Durham earlier this month…

The trip to Durham might have been successful in all sorts of ways but it didn’t satiate Dylan’s desire for a holiday. We had only been back 24 hours when the questions about ‘cottage’, ‘ sea’ and ‘boat’ started up again.  Dylan enjoyed our city break but it wasn’t the holiday he knows, in his sinew and bone, he has not yet had this year and which he is not going to let me forget.

Are you sure we can’t make him a countdown chart to our Summer holiday? I asked the staff at his care home.  I have booked a holiday on the Isle of Man, which I have an idea might be Dylan heaven: an overnight hotel en route, a ferry boat crossing, holiday cottage, sea all around us and trains, trams and funiculars. But that isn’t until the end of July.  I don’t think we can give him a three month countdown chart, the team leader reflected.  Having a picture of the holiday such a long way off could be difficult for Dylan.

So Dylan has continued with just his weekly programme. When he’s asked ‘cottage’ or ‘sea’ or ‘boat’ we’ve said:  not this week, Dylan, or later, or sometimes (in desperation) soon Dylan. Of course, none of these are easy, or I suspect meaningful, for Dylan. Time, as I have frequently noted, is one of the most difficult concepts for Dylan to grasp.  If you add to this our inability to explain to Dylan the practicalities of work and money, and that we cannot take holidays whenever we want to, then we have a potentially frustrating situation. Dylan is communicating beautifully with us and waiting patiently for a response, but it must feel as if all he is hearing is ‘No’.

The future is a cork board

Cork board with countdown chart added

One of our routines, when I return Dylan to his residential setting after his weekend at home, is to go through his weekly programme.  Dylan’s programme is fastened to his whiteboard and we talk about everything he will do in the week, ending with my arriving to collect him the following weekend. Dylan points to the pictures and I name them, sometimes signing and sometimes pausing to see whether Dylan is able to name them himself.

When I was talking Dylan through his week a couple of weekends ago, however, his finger didn’t stop pointing when we got to my arrival the following Saturday – instead, he gestured at the cork board to the right of his whiteboard.  He walked over to it, stabbing at it with his finger and looking at me quizzically. I’m not sure what you want, Dylan. I said. The member of staff who was with us pointed out that the cork board is where Dylan pins his countdown charts when he has them. He was asking what would happen after next week.  So Dylan does have a sense of future time, albeit in a representational way:  the future is a cork board.

The shop that sells the sea

So I drove away thinking about our summer holiday and how best to support Dylan with this. I calculated that if I speeded up a bit with my marking I could take a couple of days off work later in the month.  Added  to a weekend, this would give Dylan four or five days at the coast. That would do it, surely?  So later that week I booked a few days on the Yorkshire coast; while we won’t need a boat to get there, it is by the sea and we will be staying in a cottage.

That afternoon I received Dylan’s weekly update; this is a summary of Dylan’s week with a particular focus on any ‘incidents’. The email opened : Hi Liz, He’s had a really good week this week no incidents so far he has been trying to get into travel agents while in [nearby town] but he was directed away.  Trying to get into travel agents!  How I laughed.  I have never taken Dylan into a travel agents and to my knowledge he has never been in one. And yet he had figured out  – presumably from the visual clues in the window – that this is a shop that sells the sea. How clever! Visual intelligence. Initiative. Creativity. Communication. And Dylan’s steel will and determination…

Managing time

I replied to the email to say I’d fixed something up for later this month.  The staff were also thinking of ways to respond to Dylan’s requests; his key worker had volunteered to investigate the possibility of taking Dylan on an overnight trip to the coast in June.  With countdown charts to the breaks in May and June, Dylan should hopefully find it easier to manage time.

When I saw Dylan last weekend he had the chart with him and seemed to be enjoying crossing off the days. Back at his care home he requested tape to fasten the chart to his cork board, next to his weekly programme (as in the photo above). Dylan didn’t seem as anxious about his schedule when I left and needed less reassurance than the previous week about the ‘sea’ and  ‘cottage’ (I am trying to play down the issue of a ‘boat’). When I telephoned for an update last night I was told Dylan has been calm and happy all week and that the chart seems to have helped.

The red book

Perhaps, as Dylan’s understanding of time develops, he will need new strategies for managing it? Something which seemed to help Dylan in the past was his filofax. Although this didn’t have countdown charts and schedules in it, Dylan used it as an ‘object of reference’ for the management of time. He was aware, for example, that it contained the key information and cards he needs to access the activities he enjoys. He carried his filofax everywhere and would bring it to us if he wanted to request an activity. The filofax seemed to be such an important part of Dylan’s life, and so precious to him, that I was horrified when he destroyed it one night when he was anxious and upset about something which the support staff, on that occasion, were unable to fathom.

Since then, we have used a notebook to keep records and pass messages between home and care home. Dylan knows these notebooks have replaced his filofax and he keeps them in the same place, but he has never had quite the same attachment to them. Last weekend I noticed we had filled the last page of his current book so I suggested to Dylan that we go to the store to get a new one.  We went to a large Office Supplies shop where Dylan bought his filofax three years ago. As I picked up various notebooks  Dylan pushed my hand back towards the shelf in his ‘put it back, I’m not interested’ gesture. This continued all the way up the aisle. Then Dylan escorted me to the filofax section where, after consideration, he picked one out.  I suggested some alternatives but he wasn’t having it; Dylan hugged the red book to his chest as if to stop me from taking it from him.

Anxious Times

Dylan stood the empty frame in its usual place when he came home…

I hesitated about  buying the filofax for Dylan because it was upsetting when he destroyed the other one – not just for those who care for Dylan, but for Dylan himself. Dylan only ever destroys things which matter to him; he seems to self-regulate,  at times of high anxiety, by channelling his emotion through meaningful objects.  So although we have made  various ‘ripping’ resources available to Dylan, it is his favourite books and DVDs he tears when he is anxious. This means the aftermath of these events is upsetting for Dylan as he realises the loss of things which were important to him.

Dylan tearing possessions to self-regulate could be seen as a positive development in that he used to tear people’s ears when he was anxious, something which he now does only rarely. As the cycle of destroy-replace became increasingly entrenched, however, it no longer felt like a practical strategy. Recently, I’ve been experimenting with not replacing the things which Dylan rips.  This has been partly effective in that Dylan hasn’t been tearing books and DVDs as he used to. What it has meant, however, is that his focus sometimes switches to other things.

I was devastated, a few weeks ago, to hear that Dylan had torn the photo of his Gran during an incident.  Like filofaxgate, it was the sort of event that was difficult to fathom. Why? Dylan loved that photograph. He kept it by his bed, took it on overnight trips and carried it with him at times of emotional need (or at least that’s how I perceived it). It was, as far as I was concerned, the most precious of his possessions (greater than even his filofax had been) and therefore immune from danger at times of distress. Well, I turned out to be wrong about that. When I told my daughter she was upset (for Dylan) and cross (with me). She reminded me that the photograph had belonged to her, originally. Don’t give Dylan photos of my Gran if you don’t have copies of them, she said.

Changing Times

The ‘duplicate’ of the one Dylan chose…

So the following weekend, when I found Dylan with a photograph of mum he had snaffled from my room, I took it from him:  That picture of your Gran belongs to mummy, I said. The next day I went through old albums.  I didn’t have the time or energy to make copies right now (a  project for retirement maybe) but  I found some ‘duplicates’ – photos where another was taken soon after, so there is hardly a difference between the shots. I made an album of these, and some other photos, and showed them to Dylan. Would he like to choose one to keep, I asked?

I was surprised by Dylan’s choice. It is an aerial shot of me and Dylan on a beach in Dorset, taken in 2007. We are absorbed in the pebbles and too far away for Dylan and I to be ‘subjects’ in the photo (unlike the photo of his Gran, which was a portrait shot).  Presumably he chose this picture because it reminds him of a happy time?  I liked the fact that Dylan replaced the photo of his Gran with something quite different. There is a sense in which it represents him moving on, perhaps; finding new ways of using the past to help manage the present.

About Time

When I collected Dylan last weekend he wasn’t wearing his trademark Breton hat.  I was shocked. Dylan is never  without that hat; it stays fixed to his head when he is out of the house and he is very good at looking after it. Where is your hat, Dylan? I asked. He hasn’t ripped it, has he? I asked the member of staff who was with him. She didn’t know. In fact she hadn’t noticed that Dylan didn’t have it.  But now I had mentioned it, Dylan was on it:  lost it, he said, lost it.  Then:  find it, find it. 

We checked Dylan’s drawers and cupboards and the cars and rooms of other residents.  I drove to the pub where Dylan had been for lunch the previous day. The hat could not be found. Why don’t you wear a different hat for now, I said to Dylan, giving him a choice of three caps from his cupboard.  He chose a green one.  I’ll sort it out for you I promise, I said to Dylan.  I was telling the support worker that I had brought the lost hat back from Brittany and that Dylan had bought his first Breton cap in St Malo when we were on holiday in 2013, when I noticed Dylan looking at me as if he was listening to the conversation (as I think he quite often does).  Hey  Dylan, I said, perhaps we should go to Brittany next year and get you another hat? Boat, Sea, Cottage I thought to myself as I said this.  Dylan rolled his eyes as if to say About time.

A Room Of My Own

I’ve hesitated to blog about Dylan since my last post, in the spring, because he has been more unsettled and I’ve not been sure what sense to make of it.  Having reflected over the summer, however, I have some tentative observations to share…

Happy Days

While Dylan may have been more unsettled generally, he has continued to enjoy his short breaks and holidays. It is at these times that Dylan is at his calmest and most relaxed (as I suppose is the case for most of us). Since I last blogged about Dylan we have spent time at Spurn Point, where we joined our friends the Corbetts for a Safari, on Anglesey and in Northumberland.

In Northumberland, Dylan particularly enjoyed Alnwick Gardens, with their stunning fountains and cascades, and the gloriously empty Northumbrian beaches and coast path. We had some spectacular walks and a fabulous boat trip around Coquet Island, near to where we were staying. Dylan was calm throughout and happy to accept direction even at times which could have been flashpoints; in Barter Books, for example, he had to be persuaded to reduce his selection of 35 books (!) making what for Dylan were some very difficult choices 🙂  I was impressed by the way Dylan accepted this and moved on from his disappointment. A few years ago, I told myself, there would have been trouble.

Anxious Nights

I very nearly didn’t take Dylan to Northumberland, however.  I had made the booking in the new year, involving Dylan in the selection of the cottage.  Our annual summer holiday is very important to Dylan and (after Christmas) the highlight of his year.  Apart from  the year prior to moving into residential care, when Dylan’s behaviour had been very challenging and I was advised not to take him, Dylan and I have enjoyed a holiday together every year.  So it was with some concern, on the run up to this year’s trip, that I watched as Dylan grew increasingly unsettled.

The incidents being reported by Dylan’s home were not only becoming more regular but more severe.  There are a variety of behaviours but one that has been troubling to witness is the way Dylan breaks the things he loves most at these times.  This is something Dylan does (we think) as a way of managing his emotions. In a sense  it is a positive development in that Dylan now focuses his frustration on objects rather than on people . However, as Dylan typically destroys favourite DVDs and books, the incidents leave him distressed afterwards.

I have spent months re-buying possessions which Dylan has broken, only to see him break them again when he is upset. Recently I have tried not re-buying broken DVDs (Dylan can still access films via his ipad) but this has meant the focus of Dylan’s behaviour switches to other things. I’m not sure this is any better: replacing pyjamas has proved considerably more expensive than re-buying Disney DVDs and far more challenging in terms of maintaining standards of personal care.

It is very difficult to know how to respond to this situation. Clearly these behaviours are functional and Dylan is using them to cope with an anxiety and frustration which we have not yet been able to understand. Various attempts have been made to identify the trigger for these incidents (which almost always happen in the evenings) but so far we haven’t been able to figure out the cause. We have adjusted bedding (is Dylan overheating?); checked that staff are following Dylan’s bedtime routine (is he going twice through his schedule as he likes to?); monitored which DVDs Dylan was watching before an incident (is he getting over-stimulated?); looked ahead at planned activities (is there something scheduled for the next day which is making Dylan anxious?); and checked to see which staff were supporting Dylan (he has his likes and dislikes). None of these have provided a clear answer.

Favourite Things

A couple of nights before we were due to go on holiday there was a major incident. On this occasion Dylan was distressed for a significant period of time and destroyed a number of his things. There had been an incident earlier in the week and I had ordered replacements but they hadn’t yet arrived (this was before I had decided to stop re-buying DVDs).  Dylan must have been frustrated by not being able to work his emotions out on his favourite DVDs so switched his attention to an alternative which, on this particular night, was his Filofax.

Now Dylan loved his Filofax and carried it everywhere – that he would destroy something so precious was shocking. Apart from the physical  effort of tearing through leather and steel I found the emotional significance of what he had done overwhelming. Not realising that Dylan had destroyed his Filofax because he didn’t have access to the DVDs he would normally turn to at these times, and not understanding what was triggering the behaviours, I felt lost without a map.

As Dylan’s weekends at home had continued to be incident-free  I hadn’t been overly anxious about taking him on holiday in the summer but now I doubted my ability to cope. What if Dylan had a major incident while we were away? Would I be able to keep him safe and prevent damage to people and property? Providing I understand the source of Dylan’s anxiety I can respond confidently, but the unpredictability of the situation made me anxious.  It was, I decided, too risky. I telephoned the care home: ‘I don’t think I can take Dylan on holiday’, I said. I collected Dylan from his care home later that day; I would spend some time with him overnight then go away by myself the next day.

The problem next day, however, was that I struggled to pack my bag. How could I go without Dylan? We always spent our summer holiday together. It wasn’t fair that he wouldn’t get to walk the beaches and do all the things which I had told him we would do there. And how would he feel about being left behind? Surely that was likely to make him even more upset? I prevaricated for 24 hours while the holiday cottage I had booked stood empty. Then, the next day, I decided I would risk it. I telephoned the home again: ‘I’m so sorry to mess you around but I think I would like to take Dylan with me after all. Do you think you could help him to pack his bags?’

In the event Dylan was a dream. He was calm and happy all week (even  when the heating in the holiday cottage broke down and we had to manage without hot water for two days).  Potential flashpoints – being overwhelmed by goodies in Barter Books, the bus that failed to turn up – were shrugged off by Dylan with maturity and humour. Spending time with Dylan was a joy…

Precious Space

One of the things which is desperately important to Dylan – and which on this occasion we realised we had got wrong – is that his week must end with a visit home.  I had planned to pick Dylan up en route to the holiday cottage, rather than having Dylan at home the evening before departure, so his weekly programme had ended with a symbol for holiday rather than home.  Although you might think a holiday would be more exciting than a trip home, it may be that Dylan’s distress was triggered by his week not ending where he likes it to.

Although this doesn’t explain the incidents more generally (as Dylan’s programme usually does end with him coming home) it does offer a possible clue as to the source of Dylan’s distress.  Since we returned from our summer holiday it has occurred to me that perhaps what is important about coming home, for Dylan, is the opportunity it gives him to have some peace and quiet. Maybe he looks forward to his visits home not because they involve seeing me (although I’m sure he likes this) but because of the precious space it gives him from other people.

Group Living

Residential homes for adults with complex needs are busy and sometimes chaotic places. Although they are routinised they are also unpredictable environments as the individual needs of residents emerge and require response. For Dylan – who hates noise and has very low tolerance of others – this must be a challenging and sometimes stressful environment.  The mix of residents in a care home is not something any individual has control over – they are a cluster rather than a group – and there will inevitably be clashes of interest and personality.

I had hoped that living in residential care would provide Dylan with opportunities for social and emotional learning, teaching him key skills such as empathy and negotiation in order to live effectively alongside others.  Conscious that Dylan had spent the significant part of his life alone with me, I was attracted by the idea of group living and the possibility that Dylan would enjoy and respond to a livelier home environment than the one I had been able to give him. I even let myself imagine Dylan developing a special relationship – dare I say ‘ friendship’? –  with another resident.

My dream for Dylan probably included a good dose of neurotypical projection; my assumptions about group living, and its potential benefits, were based on my own beliefs and ideas about life as a young adult, rather than viewed through Dylan’s eyes. Recently I’ve realised that the other residents at Dylan’s home are probably nothing more, as far as Dylan is concerned, than an irritation ranging from minor to major proportions.  As a slight irritation they are useful; pairing residents up for outings leads to economies of scale which mean trips can last longer and be to places which are further away and more exciting.  When tolerance levels are low, however, such arrangements are out of the question; even having to share home space, at these times, is a challenge for Dylan.

There have been a number of low level incidents between Dylan and other residents recently which are probably illustrative of Dylan’s need for space.  As a result, Dylan’s programme has been reviewed and his ‘paired activities’ reduced.  Although this means he has fewer ‘big trips’, the impact on Dylan of other residents (and vice versa) is reduced. While it is possible to manage daytime activities in this way, what is perhaps less easy to mitigate are the effects of group living at night.

I don’t know from experience what a care home is like in the evenings because it’s not a time when I visit. It is widely reported, however, to be a period when the ‘institutionalisation’ of residential settings is most obvious. The staffing and environmental pressures tend to be high during the evening; all residents need to be supported with their bedtime routine, often simultaneously and before the arrival of overnight staff. Some residents may have particular anxieties around bedtime, needing  repeated reassurance and the comfort of an individual routine. This is certainly the case for Dylan who expects particular phrases to be spoken, objects to be placed in specific places and bedtime routines (such as going through the next day’s schedule) to be done twice.  Not adhering to his routine makes Dylan anxious and unsettled as, presumably, is the case for other residents.

There will be times, I’m sure, when everyone requires attention at the same time or when one or more of the residents are particularly anxious and need extra support. Responding to  these complex individual needs  must be challenging for staff working in residential settings.  Such evenings will be difficult for residents too; it’s hard waiting for help with something we can’t do for ourselves. Perhaps Dylan’s unsettled evenings are, in  part, a response to the challenge of group living?

A Room Of My Own

My daughter is about to move into shared university housing and I’ve been chatting to her about this over the summer and recalling my own ‘group living’ days. While not wanting to put my daughter off, I couldn’t help but be honest with her the other day: ‘you know what, darling? I hated it.’

Although I appreciated the benefits of my years in shared accommodation, I was relieved when I finally managed to rent a room of my own.  Whatever flexibility and tolerance I may have had in my late teens and early 20s was running out by the middle of the decade; I didn’t want to live with other people’s mess and noise anymore.  I hated getting home to find dirty pots in the kitchen and the sound of a TV or music system booming.  I had learned to live alongside others but I found it stressful; the economic benefits of shared living no longer outweighed the anxiety it provoked.

As I reflected on this I thought about Dylan. I don’t have an autism diagnosis and I found living in shared accommodation difficult – Dylan’s preferences  (keeping windows closed, putting things away as soon as they are used, ensuring nothing is out of place) suggest this is likely to be particularly the case for him.  Certainly Dylan will find noise a challenge; at home, he often asks me to turn off or stop making sound which causes him discomfort or anxiety. The environment is not something Dylan can control in a group living situation, however, and this is no doubt a potential source of stress for him. Even without his complex disabilities,  Dylan’s patience for shared living may be running thin; he is nearly 24, an age at which many young adults start to think about a room of their own.

When Dylan was a small child I assumed he wouldn’t change fundamentally, only grow bigger.  His progress through childhood proved me wrong and his developmental steps – albeit slow and idiosyncratic – surprised and delighted me. The recent developments in Dylan’s behaviour remind me that he will continue to mature as an adult. I hadn’t  previously considered that the type of adult provision Dylan requires might change –  I had assumed the severity of his autism and intellectual disability meant residential care was the only viable option. While residential living is appropriate for Dylan at the moment, now I am wondering if this will always be the case?

A seed has been planted in my mind; perhaps Dylan could live in more independent accommodation, alongside, and as a satellite of, linked residential provision? Dylan will always need 24 hour support and access to specialised care and resources, but the environment through which this is provided could change as Dylan develops. Having to consider what is best for a person who lacks capacity is a burden of responsibility, as well as of love, but  if I were to hazard on what Dylan dreams of, I might say:  ‘A room of my own, one day’…

At-Ankle Support

As I’ve mentioned previously, Dylan has a tendency to jump. When I say jump I really mean bounce. Or perhaps pogo is a more accurate description. Because Dylan’s jumping seems not to be to touch the sky (as Higashida explains this behaviour in The Reason I Jump) but to relieve extreme anxiety. There are happy exceptions, but Dylan’s jumping is mostly a sign that something in his world has gone wrong.

I’ve always been a little bit scared of Dylan’s jumping. It doesn’t sound threatening, I know. Jump.  Quite Innocuous really –  fun and friendly, even. But when someone is pounding up and down, over and over, higher and higher, bending at the knees to increase height and acceleration – well, in a restricted indoor space it is intimidating and outdoors, in a high risk environment, it can be terrifying (I will never forget a cliff top episode that nearly ended in tragedy).

Dylan’s jumping has been less of a concern since he moved to a specialised setting where his anxieties have reduced. When he needs to jump he has staff to support him and a safe environment. The rooms at the residential setting are larger than an average home environment and there is space for Dylan to jump in order to manage his anxiety. Because, as Dylan’s Behaviour Support Coordinator stresses, the behaviour is functional for Dylan; if his anxiety escalates then the sensory experience of rhythmic leaping into the air is something which Dylan seems to find helpful.

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But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while  jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .

We have become so used to exchanging images by email it’s easy to forget that this is still a recent development; a few years ago I would have had to drive to Dylan’s care home to see the situation for myself. Without doubt, new technologies are helpful in supporting communication between a residential setting and family home and thus in promoting an active partnership around care. Daily phone calls and email updates not only reassured me about Dylan’s injury, they enabled me to take an active part in discussions about how to support him with it.

Helping Dylan to manage pain and encourage healing is challenging as Dylan won’t take oral medicines and will tolerate only very limited interventions. Furthermore, Dylan is a very active young man who is constantly on-the-go. The ankle injury was therefore significant in that ‘resting it’ was not realistic; sitting quietly with his feet up was not something Dylan could understand or accept.  The doctor, however, advised that there were benefits to keeping an ankle moving after such an injury as some mobility promotes the healing process. It was really therefore a question of degree:  ice-skating on Friday would have to be cancelled but a brief walk around a favourite museum on Wednesday would be OK.

*

Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.

Although I was sorry that Dylan had to lose his fabulous first key worker recently, as E’s new role in the organisation is regional Behaviour Support Coordinator, Dylan still gets to benefit from her expertise. So when I asked for a review of Dylan’s jumping after the incident it was to E that Dylan was referred. The incident analysis which she conducted suggested patterns to Dylan’s jumping. This particular incident, for example, seems to have occurred when Dylan became frustrated about his swimming towel not being folded in a particular way. A newish member of staff wasn’t aware of the importance of this to Dylan who became frustrated at his inability to communicate how he wanted the towel folded. Tracking through Dylan’s records revealed other incidents when Dylan had become frustrated by a routine not being followed.

When Dylan chooses a jacket potato for lunch, for example, it is very important that two portions of butter are placed on the side of the plate (so he can put the butter on himself) rather than the potato being served with butter already added. Such details may seem minor to us but they can mean the difference between happiness and despair to Dylan. The thing is, E noted, she had got to know Dylan so well during her time as his key worker that she instinctively built Dylan’s routines into her care and modelled these to other staff with whom she was working.  Furthermore, members of staff who know Dylan well are familiar with the signs that he might be about to bounce and are often able to react in order to head off the jumping. There had, however, been a number of staff changes and some of this ‘craft knowledge’ of Dylan’s routines had been lost.

While Dylan’s basic care routines are recorded in his care plan there was perhaps a need, E suggested, to produce more detailed written guidance about Dylan’s context-specific routines. As the review of Dylan’s records had suggested that a significant number of Dylan’s jumping incidents happened around food choices, E suggested that Dylan’s communication book be enhanced so that he is more aware of what food options are likely to be available on a particular day. This might help Dylan to manage his expectations around meals, particularly in the community.

*

Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication.   There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely.  As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.

Nonetheless, reviewing and developing the symbols we use with Dylan has to be worth our constant time and attention. E has some other ideas for communication which we hope will empower Dylan. She has suggested introducing a key ring system, for example, to promote independence.  Again, there is nothing radical about this  – I tried using a key ring with Dylan when he was around seven years old. But the point is to go at Dylan’s pace and to find methods with which he’s comfortable; some of the strategies I tried with Dylan as a child, without success, may be more effective now.

While some autistic children and adults are confident users of communication software, this hasn’t been something which has worked for Dylan so far. I suspect this is because of Dylan’s dual diagnosis of intellectual disability and autism, a combination which impacts significantly on communication and thus on Dylan’s life more generally.  As Dylan’s ankle injury demonstrates, this can affect physical health as well as emotional well-being.

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I’ve written previously about the importance of promoting positive contact with the health services for autistic children and adults with intellectual disability.  Happily, the annual ‘Cardiff Check’ seems to have borne fruit in that Dylan seems comfortable visiting doctor’s surgeries and hospitals, although he won’t tolerate much in the way of intervention.  Coincidentally, Dylan’s annual review was scheduled  last week so the GP was able to check his ankle during the appointment. It had been, the doctor suggested, ‘a very bad sprain’ but seemed to be healing nicely and he had no concerns.

My concerns that Dylan might damage his injured ankle by bouncing on it have, happily, not come to pass.  ‘I absolutely take your point about improving communication’, I had said to E after Dylan’s accident, ‘but what if Dylan does start to bounce? We need to be able to redirect him, at least while his ankle is injured’. E suggested that we encourage Dylan to make use of his exercise ball at such times; seated-bouncing on his ball, she explained, would deliver the rhythmic movement which Dylan appears to benefit from but the ball would take the impact of his weight rather than the floor. Staff could use a ‘Stop’ card with Dylan at the onset of bouncing and re-direct him to the exercise ball.  Longer term, the aim would be for Dylan to develop the habit of seated-bouncing rather than his standing leaps.

While Dylan’s ankle has been sore he has been happy to make more use of the exercise ball. Dylan uses such a ball as part of a morning exercise routine so it is a familiar piece of kit. Although this is not something which can be used outside the home, it feels positive as a strategy for promoting emotional self-regulation. The hope is that once Dylan has accepted re-direction to the exercise ball he will use it voluntarily, instead of jumping.  As he learns to manage his anxiety, staff will support Dylan to use other resources, such as his weighted blanket and a ‘sensory box’. This sensory approach makes sense to me; I bought an exercise ball for Dylan to use at home and I must confess to having bounced on it myself, one evening last week, after a particularly stressful day 🙂 As ever, there are self-care lessons to be learned from caring for Dylan.