Blue Mind

Last weekend, we were battered by Storm Babet. My city sits within a basin of five rivers inside a circle of seven hills. In the southeast, the Don burst its banks and flooded Catcliffe.  In the southwest, the Porter plunged my local park underwater and turned my cellar floor black. I climbed up and down the steps to my basement, checking for damp.  

Not anticipating the storm event, I’d put Ladybower Reservoir on Dylan’s programme for a Saturday afternoon trip. Dylan’s visual schedule is important to him, but we can make changes when necessary. Dylan listens carefully if we tell him that something is ‘broken’ or ‘closed’, then he gets his felt tip pen and puts a cross through it.  Thanks to Storm Babet, this is what I would have to do. 

But the drive to Dylan’s care home, north of the city, wasn’t so bad. I figured the high road over the moors to Ladybower might be passable. The Snake Pass would be closed, for sure, but perhaps we could get to the dam. And while we wouldn’t be able to do the walk I’d planned, there would be something there today that I knew would thrill Dylan.

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Up on Strines moor, in the Dark Peak, I drive slowly across the streams and waterfalls fording the tarmac. Storm water is a force from the hills, tumbling through woodland and between the crevices of drystone walls, gushing across fields and over roads, down into the valley below. The reservoirs are brimming tears today, but the rain has stopped.  The sky is brightening. ‘Splash’ says Dylan as I drive down the centre of the road, water spraying around the car.

At Ladybower, as predicted, The Snake is closed, but there are parked cars and a small group of people gathered around the spot I’m heading for.  We pull on wellies, extend our walking poles, and head for the dam.  As we approach, Dylan squeals and jumps into the air.  He has pieced it together. Mummy has brought him to see the plugholes. 

Today, they are a riot of churning water. Dylan jockeys his way to the front and hooks his arms over the wall. He greets the reservoir, splicing the air with his hands in a water-worshipping gesture of respect. He scrunches his eyes. Goes ‘bah bah bah’. He will stay there now for maybe 40 minutes, doing what he does.  Counting, I think.  Following the journey of a single drop, perhaps.  Committing the water into his visual memory. I stand behind him, keeping an eye. I smile at other visitors. Explain or apologise if Dylan is blocking a photograph. I encourage him to take a step sideways, let someone else in.

Most people are understanding. The majority are probably here for similar reasons to me and Dylan. On pilgrimage. Men with enormous lenses and recording equipment, settling in. Dylan won’t allow me to take photos. I try to think of as many ways of describing the foaming water with words as I can. Top of a Guinness.  Cherry Meringue Pie. Chantilly Lace.  Old Snow.

 *

Not everyone is so understanding. Recently, I had an email from the care home to say there’d been an incident. Dylan had tried to bite one of his carers while on a trip to the Yorkshire Sculpture Park. I read the email a few times before it made any sense. The park is Dylan’s favourite place in the world. He has been going there since he was a baby. He held his 21^st Birthday Party there. It’s where he goes to celebrate and rejoice. There shouldn’t be any problem taking Dylan there, providing staff stick to the drill. This, of course, means allowing Dylan the time he needs at the weir. 

I emailed to ask if the incident had happened there. Perhaps staff had tried to move Dylan on before he was ready. You must let Dylan work through his water ritual. Counting or following water droplets or becoming one with the water or whatever it is. He will be ready in his own time. If Dylan’s in the zone, he must not be disturbed. I’m sorry he tried to bite, but interrupting Dylan’s water-watching will make him frustrated. If there isn’t time to let him stand at the weir, better not to take him at all. 

As I wait for Dylan by the plug hole, I remember this exchange. How long will we be here today I wonder.  I get out my book. I carry a slim volume to pass the time when Dylan halts at water or doesn’t want me to talk. Today, it’s Coleridge’s The Rime of the Ancient Mariner. ‘Water, water everywhere’ I say to Dylan. Eventually, he peels off and we wade through rivers of rain to a bench with a view of the reservoir. Dylan gets out his sandwiches. Gazes ahead, at the water.

*

Recently, I came across a reference to ‘Blue Mind’, a phenomenon first recognised and named by Wallace J. Nichols in 2014. Martinez (2022) describes Blue Mind as a mildly meditative state. ‘Water in the ocean, rivers, lakes and even baths’, she explains, ‘can make us feel calmer, increase well-being and boost creativity.’  Could Blue Mind Theory explain Dylan’s relationship with water? I read on with interest.  

Alexandra Benedict reports that a review of 35 studies investigating Blue Mind (by BlueHealth2020) concluded there is a positive association between proximity to water and improved mental health. Martinez (2022) identifies some of the ways in which Blue Mind acts on us physically and mentally:

• Bodies of water trigger involuntary attention, which is essential to problem-solving and creativity.
• Water increases the neurotransmitters dopamine, sometimes called the feel-good hormone; serotonin, also known as the happiness hormone; and oxytocin, described as the cuddle hormone; and decreases cortisol, described as the stress hormone.
• Water is a source of awe that expands a person’s compassion.
• The color, sound and feel of water can lower pulse rate and increase feelings of calmness.

These claims could offer plausible explanations for the way Dylan experiences water.  Certainly, water absorbs his attention. The concentration with which he focuses puts my own attempt at study to shame. I don’t know whether Dylan is more creative and logical as a result, but I’d be surprised if these attributes weren’t part of the water-gazing process. Happiness?  Check.  Awe?  Check.  Compassion?  Not sure. 

This feels like something and nothing, but I’m intrigued enough to read on. Blue Mind Theory, according to Martinez, enables people to improve their well-being through the use of water.  We can experience Blue Mind, she argues, by going for a swim; having a bath; visiting an aquarium; or drinking a glass of water.  Staying hydrated is good sense whatever colour your mind, but what of the other suggestions? 

As it happens, Dylan loves them all, deriving significant benefit from bathing, swimming, and trips to sea life centres. Other favourite activities, such as hot tub sessions and visits to museums which feature water installations (Eureka, the Children’s Museum of Science in Halifax, and Magna, the Science Adventure Centre in Rotherham, for example), may well come under the category ‘Blue Mind Theory’. As, would Dylan’s love of splashing in puddles, walking by rivers and reservoirs, and trips to plugholes.

This is hardly a Eureka moment. I noticed Dylan’s love of underwater scenes in Disney movies when he was a small child. He adores Ariel the mermaid (coincidentally, his second name). He is happiest in the sea (can it really be coincidence that Dylan means ‘son of the sea’?). He hunts for watering cans, bottles, hoses, and cans to upend or spray (concentrating carefully or squealing with delight). He points to the activities on his weekly schedule demanding: ‘wa-er, wa-er, wa-er’.  No, the fact that Dylan likes swimming, bathing, underwater worlds and walking by water is not new.   

What is potentially helpful, however, is a language for this. If we have a way of talking about Dylan’s love of water (Blue Mind) it’s easier to understand and explain it.  And if there’s a theory about why this might be beneficial to Dylan, there’s more chance that water-based activities will be systematically planned. That’s got to be a good thing, not just for Dylan but for all Blue Mind Babes. Now where did I put my swimming costume?

Sources:

All images are freestock.

Benedict, A. (2023) The Writer and Nature. https://www.rlf.org.uk/showcase/alexandra-benedict-wan/

Martinez, S. (2022) What Is Blue Mind Theory? https://www.mibluesperspectives.com/stories/mental-health/what-is-blue-mind-theory

Nichols, W.J. (2014) Blue Mind

Sex Education and the Learning Disabled

I had assumed that sex was something I wouldn’t blog about, thinking the topic too personal to discuss in relation to someone who lacks capacity. However, my increasing frustration with the lack of resources and support aimed at autistic adults with intellectual disability has persuaded me that this is exactly the sort of issue I should be writing about. It’s a topic with significant implications for the lives of the learning disabled and my observations from personal experience will, I suspect, be relevant to others in a similar situation.

*

I should clarify that I’m referring specifically to male masturbation and not to the wider sex education curriculum (such as menstruation and where babies come from). Education for adults who are diagnosed with intellectual disability should be responsive to need and masturbation is (so far) the only topic of direct relevance to Dylan.

I was a little anxious, when Dylan hit puberty, about what might lie ahead and how well I would cope, as a single mother. I had heard various second and third hand stories from parents.  One mother, I was told, was mortified to discover her son masturbating in the Food Hall of Marks and Spencer (fruit and veg aisle). Another mother reported a fondness for public transport.  As adolescence approached, I was on high alert.

In the event, this turned out to be something I didn’t need to stress about. I caught Dylan humping the sofa a few times but he quickly learned that this was something for ‘private time’. Can you go and do that in your room please, Dylan?  I tried to follow the advice to keep my voice matter-of-fact and to disapprove of the location, not the activity. It wasn’t long before Dylan was taking himself upstairs quietly (almost, it seemed, discreetly) and closing the bedroom door firmly behind him.

*

Enabling an adult who lacks capacity to have privacy is not easy, particularly when there are comorbid conditions such as epilepsy.  Bathing is a context, for example, in which the safety of an adult with intellectual disabilities has to take precedence over the aspiration to provide private space for personal care routines.  Allowing an adult with an intellectual disability the privacy required for masturbation may not pose the same level of risk, but it does still raise difficulties.  Without language, someone with a disability can’t call out ‘just a minute’; at what point is it reasonable for a concerned parent/carer to open a closed door and check that the vulnerable person is alright (and not having a seizure, for example)?

After initial errors and stumbles I learned to knock softly on Dylan’s door and call Are you OK Dylan?  We developed an understanding that if Dylan responded OK I wouldn’t disturb him.  OK, in this context, is a request for privacy. If this ‘call and response’ doesn’t work, I knock again, more loudly. Can I come in Dylan?  This is Dylan’s second chance to reassure me and to ask for privacy, and he will do this either by saying No(which Dylan sometimes uses correctly in response to a direct question) or, more commonly,  OK (‘yes I’m fine, please go away’ not ‘ yes come in’). This mostly avoids any misunderstanding or awkwardness.

*

It’s easy to misread a situation, however. If we make assumptions or project our own feelings onto a disabled person we are likely to get things wrong. Dylan puts up with our misunderstandings sometimes (a lot, perhaps) but he has his limits. His protests, over the last two or three years, have become more frequent and increasingly forceful to the extent that ‘challenging behaviour’ is now a fundamental part of his profile. Recently, concerned by an escalation of incidents involving ‘ripping’, I asked staff to keep a log of the behaviour, noting the time of day; location; activity; environment; and item ripped. Based on these records, It seemed to me that the ripping incidents were associated with masturbation.

It can’t be easy for adults in residential homes.  Care homes are busy places. They involve levels of support which may feel like surveillance. Even with sympathetic routines and staff, regular checks need to be made on vulnerable residents. Non-verbal adults who lack capacity may find it particularly difficult to protect their private space in such a setting. But it ought to be possible, I argued to Dylan’s care home manager, to make sensitive adjustments to care so Dylan could have the space he needs. If it was his frustration at being interrupted that was resulting in the incidents of challenging behaviour, any attempts by staff to follow schedules and routines would be counterproductive. Could the visual checks be suspended at such times?  And could the cleaner wait until Dylan gets up? 

*

Such adjustments seemed to me a reasonable and sensitive way of providing Dylan with some privacy and I was optimistic this might reduce the behaviours that appeared to be linked with masturbation.  Still, it occurred to me, it might be useful to also offer some sex education. Adults with intellectual disability need support to negotiate the skills and practices of daily living, which includes masturbation. Dylan had shown no interest in a book about puberty when he was younger, but perhaps he was ready for more information now: a short film would be good, as this is the format he engages with and processes most easily. 

My first step was to request resources and support from the National Autistic Society, as this is the organisation which provides Dylan’s care. They had some material for parents and professionals but nothing aimed at autistic people themselves – or rather nothing aimed at autistic adults who have an intellectual disability. I wasn’t particularly surprised as this is often the case with the NAS; MENCAP tend to be a much better source of support. When that also drew a blank, I had to widen my search. After hours of googling YouTube clips and educational videos, however, I had found nothing suitable.  There are plenty of materials for parents and professionals, and some aimed at autistic adolescents who don’t have an intellectual disability and who can read, but nothing for young men such as Dylan.  This is yet another way in which adults with an intellectual disability are either made invisible or perceived not to have the same feelings, desires and needs as other adults.

*

What is a mother to do?  Ideally nothing at all; this is one thing I would prefer not to have to take responsibility for. But in the absence of any intervention or resource from the care provider (or anyone else in the sector as far as I could tell) parental support was probably better than nothing. Too bad there wasn’t a father around, but I’d managed pretty well on my own so far and I’d sort this too. Still, my commitment wavered as I searched for appropriate resources.  Trying permutations of requests for a video brought up endless porn and dating sites. My search history made me blush. ‘Don’t be going missing now’, I told myself, alarmed at the thought of someone analysing my laptop for clues about my life.

When a search turned up an ‘anatomically accurate model’ one day, the word ‘educational’ in the description was a relief after so much of the other material. I wasn’t quite sure how it might be used to support Dylan, but ‘objects of reference’ had been helpful in the past and at £24.22 it wasn’t too expensive. As I still hadn’t been able to find an appropriate visual resource for Dylan I decided to order it. I didn’t pay much attention to the manufacturer but I wasn’t particularly surprised, when I received the confirmation email, to discover that my package would be coming from Rotterdam.  The customs fee, however, was a shock. There was no way that I was going to pay that; it would have to be left to languish at the sorting office I told myself.  So, I was surprised when my postman turned up at my backdoor with it one day; I smiled at him and crossed my fingers he wouldn’t ask what was inside. 

*

I’m writing this around three months after delivery. For most of that time, the model penis has been in Dylan’s drawer. When it arrived, I showed it to Dylan in a matter-of-fact way;  he looked slightly askance at me and pushed it away. Although there has been a decline in the number of challenging incidents associated with masturbation, my sense is that any improvement in the situation is due to the adjustments to routine and environment that have been made, rather than any attempt to address the issue directly with Dylan.

We continue to search for resources on this topic; NHS Leeds, for example, have produced a useful document, Puberty & Sexuality for Children and Young People with a Learning Disability. These materials are designed, however, to be used in a classroom context with an educator, rather than accessed individually. For older adults in residential settings, an individual resource such as a short film would be a more appropriate intervention. Surely it can’t be too difficult, especially in this era of animation and AI, to produce, such a thing? I cannot believe that I am the only parent or professional who has identified this as a need. If anyone is aware of a resource which might be suitable, please let me know!

Resources:

NHS Leeds (2009) Puberty & Sexuality for Children and Young People with a Learning Disability.

Kate E. Reynolds (2014) What’s Happening to Tom? A book about puberty for boys and young men with autism and related conditions. Jessica Kingsley.

Images:

The first two images in the post are of the cover and an inside page from the book by Kate Reynolds.

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…

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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…

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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).

A Different World: Making Sense of Things

I haven’t updated Dylan’s blog for a while. All has not been well but I haven’t felt able to write about it because I’ve been struggling to make sense of the situation. While there are still plenty of unanswered questions, recent developments shed light on some of the challenges of the last few months. As you read this account, those of you familiar with the terrain will no doubt recognise the landmarks in Dylan’s story much earlier than I did.

November 2020

Looking back, I think that the last time Dylan was happy was August 2020, during a holiday in the Lake District. Even with social distancing measures in place, and some necessary adjustments that must have seemed puzzling to Dylan, he was his joyous, passionate and energetic self that holiday. In the autumn after that trip, things changed.

When Dylan is distressed he tends to shred his belongings, starting with schedules and books before moving  onto CDs, DVDs and ultimately clothes. The ripping behaviour seems to be an attempt to regulate his emotions, i.e. it is a way of releasing his frustration and anxiety, particularly when we haven’t understood his attempts to communicate. We assume this is the case with his other behaviours:  jumping, flooding, urinating and biting.  When even this fails, Dylan hurts himself, scratching his arms and body and scraping his knuckles. 

In the autumn, there were reports of Dylan engaging in all of these behaviours at the care home. This was distressing but (I told myself) understandable. The situation was frustrating.  Dylan’s daily activities were restricted by Covid-19 regulations. There were staff changes which meant Dylan’s attempts to communicate might not always be understood. On top of this, building work on new accommodation for Dylan (designed to relieve his stress at living in proximity to other residents) had been suspended. The behaviours would decrease, I reassured myself, once these temporary problems had been resolved.

In November, Dylan had to self-isolate as he had been in contact with a member of staff who had tested positive for C-19. This meant he missed his regular weekend visit home. I was concerned about Dylan as there had been multiple reports of incidents that week. I became increasingly anxious, the following week, when incidents continued, with a new behaviour added.  Staff had noticed Dylan had a sore tongue. They wondered if he had been picking at or biting it. Really?  Would Dylan injure his own tongue? What would it take for someone to do that? How distressed must he be if he needed to do this to numb the pain? I started to wonder if the problem was the pandemic, or if it could be something else.

January 2021

Christmas at home was quiet but I became increasingly concerned about Dylan during January. There were reports of more incidents at the care home and, as well as the usual behaviours, concerns that Dylan wasn’t getting up in the morning. Towards the end of the month I had to work one weekend so Dylan wasn’t able to make his usual visit home. I was shocked when I collected Dylan the following weekend. I could see he was tired but he also seemed depressed. Dylan hardly seemed to recognise me and to care little about going home. I watched Dylan in my rear-view mirror as I drove to a valley where I had planned a picnic and walk. There was something not right. When we arrived, Dylan got out of the car and started leaping in the air, his face twisted, as if in pain. 

When I managed to get Dylan back into the car, I decided it was time to act. Dylan was in distress and I needed to respond. I resolved that I would bring Dylan home to live with me for a while. The home visits seemed to be good for Dylan.  I rarely witnessed any behaviours at home and on the infrequent occasions I didn’t have Dylan at home for the weekend, the incidents increased. Perhaps the care home environment was just too stressful for him during lockdown. I could look after Dylan until his new accommodation was ready.

That evening, Dylan seemed tired but relaxed. At some point he went upstairs to his room. All was quiet. No jumping or sign of distress. A little later Dylan appeared at the foot of the stairs, staring at me. What’s that on your cheek, Dylan I asked? It was dried blood.  Dylan regularly has nose bleeds but he usually comes to find me for help. As he hadn’t, I assumed it hadn’t been very serious. When I went upstairs with Dylan, however, I found a pool of blood on his bed. How odd, I thought. Dylan watched while I stripped the bed. There was so much blood I had to throw the quilt away. I thought again how strange it was that Dylan hadn’t come to find me, and how odd that the blood was pooled rather than smeared. I looked up his nose and into his ears but couldn’t see anything amiss.

Next morning, at breakfast, Dylan showed me his tongue and said ‘ooh’. It was badly bruised. Could the blood have come from his tongue?  I struggled to make sense of what I was seeing. Is this what staff had noticed in November? Did Dylan do this to himself while I was downstairs the previous evening? Surely not? In discussion with the care home manager, the possibility of epilepsy was raised. As I worked through online training materials (in case it was) I felt terrible about all the things I had done wrong. Because I hadn’t realised Dylan may have had a seizure I didn’t check him over or monitor him through the night. I hadn’t realised that he was tired and disoriented afterwards and that I needed to adjust my expectations and care. I  shuddered at the thought of what I had not known and tried to be reassured by the fact that Dylan had survived my ignorance.

At Home

For a referral to the epilepsy clinic a seizure needs to have been witnessed. We were still in the realm of speculation with no actual evidence of what had happened. Meantime, the spike in incidents at the care home continued. I decided to go ahead and bring Dylan home, to see if I could settle him. So, during February and March,  Dylan spent six weeks with me, with a day’s respite each week at the care home. I had assumed I would need to take time off work but I managed to keep things going by pre-recording lectures late at night and seeing students early in the morning, before Dylan woke up. 

I was exhausted but knew that I had done the right thing and that it was worth the effort. In the time that Dylan was with me there were no incidents.  Dylan and I found a rhythm which allowed me to work in the mornings before eating lunch together and heading out for a long walk in the afternoon and early evening.  The physical activity and home environment seemed to do Dylan good and to remove his stress and anxiety. His distress must have been environmental, I decided.  I was relieved to hear that Dylan’s new accommodation would be ready by Easter. Hopefully this would allow us to create a calm and homely environment for him. I also planned to suggest some changes to his programme of activities, based on my experience of having Dylan at home.

Home-from-Home

I felt cautiously optimistic when Dylan moved into his new accommodation in April. By reconfiguring a wing of the building where Dylan and another resident had neighbouring upstairs bedrooms and a shared downstairs area, two self-contained flats had been created. This would give both residents the separate space they needed and support their independent living skills. Dylan had the downstairs flat (because of his jumping) with a view of the garden and his own kitchen, lounge, bathroom and bedroom. The lounge had a new wooden floor and the new bathroom (cleverly created from a walk-in storage space where the Christmas decorations used to be stored) was not dissimilar to the bathrooms in Dylan’s beloved Premier Inn. The flat was a lovely light-filled space. If the environment had been a trigger for Dylan’s anxiety and distress, I told myself as I unpacked his things, the new accommodation should surely help to settle him?

But within a few days of moving in, there were reports of  Dylan ripping, jumping, urinating and hurting staff and himself. I couldn’t keep up with the tearing of clothes. The plan not to lock Dylan’s cupboards (thinking that if we addressed the issues that Dylan was finding challenging, locks wouldn’t be needed) had to be abandoned as Dylan tore his way through a pile of new clothes and pyjamas. The situation was out of hand and I was close to despair. 

I’ve always believed that behaviour is ‘functional’.  So, what was Dylan trying to tell me? It couldn’t be the environment –  Dylan’s new flat was lovely and gave him space and privacy. Was it his activities? I was concerned that these were scheduled around shift patterns which might not fit in with Dylan’s natural rhythms and with staff who might not enjoy supporting Dylan on long walks. Could staff be recruited who shared Dylan’s interests and who could work alternative shift patterns for Dylan? I was disappointed, but not surprised, when the answer was no. It is complex running a home for multiple residents and care cannot be individualised as much as I might like.  Perhaps residential life just didn’t suit Dylan? Maybe what he needed was a supported living setting in the community, with a home-based care routine around his needs? I asked for a review meeting and spoke to Dylan’s care package manager about the possibility of looking for an alternative placement.  

June 2021

Then, in early June, I took a call late one evening.  Dylan had had a seizure. This time, it had been witnessed by a staff member.  As Dylan was unconscious for more than five minutes,  paramedics had been called and were on their way. I tried to wait patiently for an update but it was too stressful. I got dressed, headed out into the night.

Dylan was conscious but sleepy and confused and his tongue was badly injured. The member of staff reported that Dylan went rigid just before it happened and that he fell from standing (Dylan is 6 feet tall and over 12 stones in weight), hitting his head on the hard kitchen floor.  Later, the consultant would tell me that many epilepsy-related deaths are due to the fall, not the fit – that a key reason for controlling seizures is to prevent the falls.

The paramedics were (as everyone says) brilliant. They saw immediately that it was not in Dylan’s interests for them to follow strict protocol and take him to hospital – it was better if we did the necessary checks on Dylan through the night at the care home.  So, I helped put Dylan to bed and did the first couple of half hourly checks myself, before realising that night staff were perfectly able to do this and that I should leave Dylan to their care and routines.

Driving home down country lanes and across the city I was struck by how many insomniacs there must be.  I passed only a handful of cars on the road but my journey was lit by house windows all the way, like ships passing in the night. The world seemed out of kilter. Adrift. ‘The pandemic’, I thought to myself.  I slowed down, took a deep breath.

A Different World

I’ve always been aware that living with autism is a lifelong journey, full of turns in the road and no arrivals – as soon as you’ve sorted one thing, another is on the horizon. I don’t think I’d ever considered that one of the bends in the road would lead me into a new country. And epilepsy does feel like a different world – one I find scarier than ‘autism’ or ‘learning disability’. Supporting Dylan could be challenging but I knew the terrain.  Now, I am in a world of uncertainty. What is causing the seizures? When will the next one be? Will someone be there? Will Dylan be OK?

It is early days and perhaps there will be answers to some of these questions. Dylan has appointments booked for investigations, if he cooperates. I’m keeping an open mind because Dylan has already surprised me by accepting the epilepsy drug  – the first time he has ever consented to take medicine.  Is it because at some level he realises it will help him? Perhaps. More likely because it looks like sugar, sprinkled on his yoghurt.  What else is new?  Epilepsy bed mats and monitors. Anti-suffocation pillows.  Hydration tablets. Suspension of swimming. Constant vigilance and observation. An epilepsy journal. Hopefully some patterns will emerge and help anticipate the next seizure.  Already (building retrospective graphs) it is clear that Dylan’s behaviours increased in the week before the seizure incidents and continued to be high for a week afterwards, before falling.  

How to make sense of this? Are the behaviours caused by the seizures or causing them? For months I have been trying to work out why Dylan has seemed so distressed and to suggest adjustments to his care (or even a change of placement) in response. Autism ‘experts’ tell us that behaviour is functional and that we need to consider it as an attempt to communicate.  But what if the trigger for some of Dylan’s behaviours is neurological? That these are compulsive acts caused by seizure activity in his brain? The neurologist observed that Dylan may have been having minor background seizure activity for years, but at a level where we wouldn’t notice. The different world for Dylan, perhaps, is the development of the tonic clonic seizures which cause loss of consciousness and can result in injury.

I’m hoping the epilepsy drugs control Dylan’s seizures but I’m trying to figure out what else we could do to help. Stress would seem to be a factor. Levels of sleep, sugar, exercise, temperature and hydration are all under my forensic lens. I wish Dylan could tell us how he feels. But, as the neurologist reflected, making sense of Dylan’s behaviour may have been difficult before but it will be even more complex now, with epilepsy factored in. In the past I have referred to my quest to ‘see the world through Dylan’s eyes’. Having my eyesight tested recently, the optometrist reminded me that we see with our brain, not with our eyes. Indeed. Now, I am asking myself what the world looks like through Dylan’s brain. 

Postscript:

The deep breath I took on the drive home turned out to be too late.  A couple of weeks later I received a court summons for speeding that night (35 mph in a 30 mph-zone) as I result of which I was given penalty points and a £100 fine.  Another early lesson from this is not to be so distracted by fear and anxiety that you take your eye (I mean brain) off the road.

Daddy

I’m always amazed by the way Dylan intuitively grasps new technologies. Even with his learning disability he is a Digi kid, understanding (unlike his mother) that devices need to be swiped not clicked.

One of Dylan’s favourite things to do is scroll through the photos on my iPhone at breakneck speed (recent to oldest and back again) pausing only for a favourite image (York Cathedral) or to query a photo taken in his absence. These include the photos my daughter sends via WhatsApp which magically appear in my photo stream: ‘Sister! Sister!’ Dylan tells me when he encounters them.

I often imagine I hear sadness in Dylan’s voice as well as bewilderment. I tell him that ‘sister is at school’ which is the nearest I can get to an explanation for my daughter’s absence. It seems to satisfy Dylan in that he repeats it back to me: ‘Sister school’ is one of the few two-keyword utterances he produces regularly.

‘Daddy! Daddy!’

My ex-husband remarried recently and my daughter and her half-sister were bridesmaids. Swiping through my iPhone photos the weekend after the wedding, Dylan froze, his finger hovering mid-air over a photo of the three of them (sent by my daughter via WhatsApp): ‘Daddy!  Daddy!’ he shouted.  I didn’t know what to say. I don’t have photos of my ex-husband around the house and Dylan hasn’t had more than fleeting contact with him since we divorced 15 years ago. I thought my heart would break.

I should have realised. Although my ex-husband is not Dylan’s biological father he co-parented Dylan from six months old to ten years. My ex-husband (my daughter’s biological father) is the man Dylan knows as ‘Daddy’.  And I know from my own experience, and from what my daughter tells me of hers, that separation can have an enormous impact on a child.

I really should have realised. After all, I have just finished writing a book about the impact of divorce on a mother’s relationship with her daughter.  I have reflected on and written about the ways in which the end of my marriage affected my daughter. Why didn’t I consider that Dylan would also be affected by this? Because Dylan wasn’t able to talk to me about it I was able to ignore the weight of it? What else is Dylan carrying, I wonder? How much more lies underground?

Step Relationships

I think I knew really. I just didn’t want to admit it.  I’ve written before about the way Dylan finds emotional release through music. How he loves Sting’s Fields of Gold (which his Daddy used to dance him around the room to). How he can’t bear to listen to U2s All That You Can’t Leave Behind (the soundtrack to my divorce). And now I remember the way Dylan would look at me with questions in his eyes when his Daddy called to collect just his sister at weekends and holidays.

I remember my solicitor telling me, during divorce proceedings, that in her experience non-biological parents rarely claim access to a child following a divorce. While I didn’t think I had any grounds for claiming access to my step-daughter, I thought it might be different for my husband and Dylan. After all, my stepdaughter had a mother whereas my husband was the only daddy Dylan knew. They were, to all intents and purposes, ‘father and son’.

I was surprised my ex-husband didn’t want contact with Dylan after the divorce especially as he’d previously asked if he could adopt Dylan. Already aware the marriage was unravelling, I had said no to his request at the time.  Perhaps in this I considered my own best interests rather than Dylan’s? Maybe it would have been better for Dylan if I’d have said yes…

Long Lost Families

I might not have realised how hard being a parent is but Dylan’s biological father had been clear about this. He was not prepared to co-parent another child he told me (he had two from a previous marriage and had not found parenthood easy). If I continued with the pregnancy, I’d be on my own.

When a relationship ends we are careful to tell children it isn’t their fault and that the split is nothing to do with them. How would I explain things to Dylan when he was old enough to understand I asked myself, after he was born? Watching Long Lost Families I wondered how a searching child would feel if they found a father like Dylan’s, who didn’t want to be found.

Anxious about the future, I asked Dylan’s biological father to write something I could give to Dylan when he reached 18. When he refused, my patience ran out and I hacked into a display case of photographs at the college where we worked, replacing a professional shot of my ex- with something a little more personal. It was wrong (today we call this ‘revenge porn’) but it made me feel better. The photo I stole from the display case is lost. It doesn’t matter now. As it turned out, it wasn’t needed:  Dylan doesn’t have the capacity to understand his biological father’s absence.

Finding Daddy

The photo of my daughter and her half-sister at their dad’s wedding arrived on the day Dylan and I headed south for our annual summer holiday. This year I had booked a cottage on the coast, selected for its proximity to the things which Dylan loves: beaches, steam trains, country walks, rivers, castles and cathedrals. I didn’t subconsciously choose it (did I?) because it lay within spitting distance of the college where his biological father and I had worked.

If I had been taken by the idea of taking Dylan down memory lane I didn’t think about it while we were there. Even Dylan’s ‘Daddy! Daddy!’ cry didn’t bring that other daddy to mind in the week we stayed nearby. It wasn’t until the morning of our departure, when google maps directed us to an alternative route and I found myself driving past the college, that I thought about him. I cast a sidelong glance at the campus as I drove by. Then, from compulsion, did a u-turn and pulled into the college carpark.  Dylan looked at me quizzically. His script read: ‘next stop lunch’.  “Let’s have a walk before we get on the motorway, Dylan.” I said.

So Dylan and I spent a half hour strolling around the college grounds in the blossomy hum of summer. There were a few new buildings but the place felt eerily familiar. “That is where mummy used to work” I told Dylan, pointing at a red brick house.  “And here”, I added, “is where your daddy’s office was”. I photographed Dylan standing by the building, looking like his father.

It isn’t easy to talk about complex issues with someone with a learning disability, especially when they are ‘non-verbal’, and I have no idea how much Dylan understands of what I shared with him that day. But Dylan’s reaction to the photos on my iPhone had revealed how important family is to him, and how acutely he feels the loss of it, and I wanted to acknowledge Dylan’s emotional life by bringing his history out, into the open.

 

Selfie in the college car park…

 

 

 

 

 

Being Harry: Autism and Virtual Reality

While I was watching England hold their nerve against Columbia last week,  Dylan was in Whitby with his key worker and another member of staff. Dylan is impatient for the sea and the overnight trip had been planned to help Dylan manage the wait-time for his summer holiday.

I know that not everyone is interested in football. However, the progress of the current England team is so unexpected that even those without any interest  in the game (my Dad, for example) are aware of what is happening.  It feels a bit like fantasy football.  I’m sorry that the trip has coincided with the England match, I said to Dylan’s key worker.  I had an idea he might otherwise have been  watching the match in the pub with his mates.  That’s OK, he replied.  I would have been working anyway.

Team Changes

Dylan’s key worker also told me he would be moving on soon.  I wasn’t surprised by the news. I understand that young people, wanting to start a family of their own or buy a first home, have financial considerations which affect decisions about work. As I’ve noted before, support workers are not well paid for the job they do.  Caring for others is one of the most demanding and valuable of roles and yet it is also one of the mostly poorly rewarded. As a consequence, staff turnover is high.

Dylan has been lucky to have been matched with experienced staff  but, even so, he has already had three different key workers. When Dylan’s first key worker left I was devastated. It hadn’t occurred to me, at that point, that this would be a feature of life in residential care. When Dylan’s second key worker left, after a fairly brief succession, I realised the role would always be temporary. The key worker may be the warden of the key but I shouldn’t assume they would be around long enough to unlock the door (as it were).

A potentially positive outcome of this situation, however,  is that it has helped me identify one of the  arguments I will make on my application to be appointed Dylan’s Welfare Deputy:  given the high staff turnover in the care sector, the continuity of support which a family member provides is invaluable, particularly in the context of someone who, as well as lacking mental capacity,  is autistic and non verbal.

Harry’s World

An American friend emailed recently to say she would be visiting with her teenage children next month.  Maybe we could visit Harry Potter World? she wrote.  I was excited by the idea but when I looked online I realised it was impossible; Harry Potter World is already booked up for the summer.

When Dylan’s first key worker moved to a new job she organised a trip to Harry Potter World for Dylan and another young adult. As well as a fabulous day out for the staff and residents, this was a good way of marking E’s departure. So when Dylan’s current key worker told me he had a new job, I commented that the trip to Whitby was perfectly timed in terms of helping Dylan make a connection with saying goodbye.

The trip to Harry Potter World was Dylan’s first immersive experience (I’m sure he would love Disneyland but I’ve never had the oomph to take him). Dylan, apparently, had a marvellous time,  ‘laughing all day’. They had arrived slightly early for their tour, having driven down from Yorkshire,  and the Harry Potter staff, realising the wait might be difficult for Dylan, had let them join an earlier tour and proactively made adjustments for Dylan, such as front row seating.  I couldn’t fault their practice, his key worker told me, it was an absolutely brilliant day.

 

Virtual Reality

Afterwards I wondered what Dylan had made of the experience. Did he think he was at Hogwarts? Does he believe Harry Potter is real? I remembered a conversation with a clinical psychologist at a time when Dylan’s ‘behaviours’  were a cause for concern. As we worked through his ‘incident charts’ the psychologist noted the link between Dylan’s anxiety and the films he watched.  It may be the case, the psychologist suggested, that Dylan cannot differentiate fantasy from reality. Perhaps, when he is watching a distressing scene in one of his DVDs, he finds it difficult to regulate his emotional response. Dylan’s extreme reactions to some of his films are understandable if you imagine them as responses to situations he believes are real. After all, these are extreme situations:  separation; loss; death; war.

Apparently there are ‘immersive cinemas’ which offer a total sensory experience. As well as a film being a visual and aural event, the senses of smell, touch and taste are engaged.  Thus during an ocean scene the audience might be sprayed with water; in a domestic setting, smells of home cooking could be released into the auditorium. I’m not sure whether this would be a good or a bad thing for Dylan, given his heightened sensory function.

I have similar reservations about the possibilities offered by Virtual Reality Headsets.  As they have become available on the mass market I’ve toyed with the idea of buying one for Dylan. Some aspects might appeal  – Dylan spends so much time watching films that the idea of him being able to enter an immersive and participatory environment is quite exciting. I’ve seen some people, however, become disoriented  when using the Headsets and describe the experience as unsettling. Equally, therefore, I can imagine Dylan being made anxious by such full engagement of the senses.

Fantasy Football

Right now, I feel as if I’m wearing a Virtual Reality Headset. England? In the World Cup semi-final? For the first time I changed my plan for spending time with Dylan last weekend. After the 120 minutes plus penalties marathon against Columbia earlier in the week, I wasn’t sure Dylan and I could spend Saturday afternoon together without one or both of us becoming frustrated. Dylan can cope with a little bit of football on TV but he has his limits. And I really wanted to watch the England v. Sweden match. Could I pick Dylan up on Sunday instead of Saturday? I asked staff.

It really does feel like a Fantasy Football Tournament. The scenes from the Samara Stadium last Saturday seemed beamed from a parallel universe.Are those fans trapped in Virtual Reality, I wondered? Has my TV turned into a giant VR Headset? When England won I toyed with the idea of getting on a plane to Moscow to find out.

If England do get to the World Cup final this year, I told myself, someone will set up an It’s Coming Home theme park where we can re-live the matches, as players or fans, in a fully immersive world.  The theme park will probably be somewhere just off the MI –  hopefully in the north, rather than the south, in honour of the contribution made by South Yorkshire to the winning England team. So while Dylan hangs out with Harry Potter, I can celebrate with Harry Maguire…

 

 

Note:

The photographs of Dylan at Whitby and Harry Potter World were taken by staff on the trips.  The other images are sourced from the Internet and to the best of my knowledge are copyright free.

The photograph from the 2018 World Cup shows England players celebrating a goal in their match against Sweden at the Samara stadium on Saturday 7th July. The goal was scored by Harry Maguire (second from right in the photo) who is from Sheffield, my hometown. In the photo he is being congratulated by John Stones who is also from South Yorkshire (Barnsley). The photograph shows Kieran Trippier on the left and another Harry (Kane) on the far right.

The final photograph shows the 1966 England World Cup squad. I was alive but too young to remember 🙂

 

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.

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.

*

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.

The Tandem Of Memory

Cornwall, 2008

One of the things Dylan and I enjoy doing (which is perhaps obvious from our blog photo) is tandem cycling. I will not forget our first time. We were on holiday in Cornwall in the summer of 2008 so Dylan would have been 14. Our holiday cottage was close to a cycle hire on Cornwall’s coast-to-coast trail and all week, as we drove by on our way elsewhere, I found myself hankering after a bike ride.  ‘If your brother wasn’t autistic’, I told my daughter, ‘we could do that.’

There are some things which aren’t possible with an autistic child in the family. Mostly I try not to represent this within a deficit framework, as a loss, but focus instead on the opportunities which Dylan’s interests allow –  rides on steam trains for example. Sometimes, though, my daughter or I would sound a note of frustration at perceived obstacles. On summer holidays, in particular, we seemed to be presented with opportunities which didn’t feel like an option for us. So every day on that holiday in Cornwall, as we drove by the cycle hire, I rehearsed the reasons it wasn’t possible.

Dylan wouldn’t be able to balance. He had no awareness of people or traffic so wouldn’t be able to steer.  Even if he managed to stay on and avoid other cyclists he wouldn’t know how to brake. He would fall off and hurt himself.  And he wouldn’t wear a helmet.  He could be seriously hurt. No, it was out of the question. ‘We could get a tandem mum’ my daughter retorted.

While being on holiday with an autistic child can bring to mind all the things that aren’t possible, equally they can stimulate a certain courage. Everyday routines may be enabling when you are living with autism but they can also be limiting; holidays can be like lifting a sash window after rain and letting it stand open just a little. ‘No way’, I replied: ‘we’d both end up in the hospital. Your brother is heavy. And he’s taller than me. No way’.  But all week that window stayed cracked open. And each day, as we drove past, we could feel the air on our faces.

 *

Norfolk, 2010

On the day before we were due to leave  I said Yes. In my memory it has remained one of the most joyous days of my life. I remember chatting to the cycle hire lad, explaining the situation and hoping to be talked out of it. There was something encouraging about his nonchalance; he had no doubt that I would be able to manage. He showed us to a car park and told us to practice a little; if we changed our minds that was fine. But oh the exhilaration as I managed the first few yards. The excitement was overlaid by apprehension as we wobbled along  the trail later that day but the main feeling I remember is happiness.

Since then, tandem cycling has been a regular activity. I tried Dylan on a solo bike once, in an empty car park, to see if he could manage but he became distressed.  Dylan wasn’t comfortable or confident and that’s fair enough; I need to trust his evaluation of his own limitations sometimes. And in any case, tandem cycling has all sorts of benefits.  It helps develop  Dylan’s  coordination, for example, and his trust in somebody else. He also learns to work in partnership and to understand the importance of team work.  Perhaps one of the most significant benefits, however, is that tandem cycling requires us to develop alternative ways of communicating.

Monsal Trail, 2012

Because I have my back to Dylan on a tandem we  can’t use the non-verbal strategies we usually do. So, for example, if we approach a junction  I can’t point left then right and ask ‘which way, Dylan?’  because I can’t see his answering point. Dylan doesn’t understand the abstract ‘left’ and ‘right’ so I can’t ask a straight question. What to do? I could make the decision for us but that takes away Dylan’s participation.  I could stop at each junction so we can use non-verbal communication but that means a stop-go ride (not great on a tandem).  So what we have developed instead is a system of vocal response to gesture, something I hope will encourage Dylan’s use of language off the tandem as well as on it (by increasing his understanding of ‘yes’ and ‘no’ for example).

Derwent Water, 2014

For me, then, the greatest gift of tandem cycling is that it is a shared practice which requires the social use of language.  Dylan doesn’t simply have to pedal; he has to communicate with me so that we do it together.  Dylan’s limited core vocabulary includes the expression ‘pedal ready’, which he responds to perfectly, spinning his pedal to midnight to bear down on it in time with me:  ‘One, two, three, push Dylan’.  Dylan’s balance is marvellous and he sits impeccably on the back, responding to an increasing repertoire of commands and instructions:  ‘Duck Dylan’ if a tree branch lours too close to my head or ‘Bumps ahead’ if I spot sleeping policemen on the trail. He can, it’s true, be a bit of a slacker at times: ‘Push Dylan’ I shout ‘come on, push’. Sometimes I take my own feet off the pedals to encourage him to put his back into it – and when he does it’s like a sudden wind at mine.

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Clumber Park, 2015

Our home city (sometimes referred to as The Rome of England) lies in the bowl of seven hills. You have to be fit to cycle here; whether I turn left or right from my front door within five minutes I have hit a gradient to raise the heart’s beat. Of course the serious athletes and cyclists love it;  high-viz vests jog and glide by my window in a constant stream from 5am till midnight.  But it’s not so great on a tandem when you are at the front and the man on  the back is over 11 stones and not pulling his weight.

Tandem cycling has always been something we do on holidays, therefore, and on the more manageable  trails which criss-cross the nearby Peak District and skirt the lakes and reservoirs. Although I’d love to own a tandem I cannot imagine lifting and securing one on a car roof rack by myself. So instead we hire them when we need to and, since that first ride in Cornwall, have enjoyed fabulous cycling across the country and locally. So last weekend, hankering after a bike ride, I planned a trip to one of our favourite places.

‘It’s exactly a year since we went to Clumber’ I told Dylan on the drive there. I knew that because earlier in the week I’d commented to a friend that the Honesty I’d bought at Clumber Park that day had done spectacularly well in my garden.  ‘In fact’, I said to Dylan, ‘I think that might be the last time we went  cycling’. I fell silent. I’d realised that it was approaching a year since Dylan moved to residential care.  For whatever reason, adjusting to new patterns of contact seemed to have meant less cycling. Then I remembered something:  ‘But you’ve been cycling haven’t you?’ I said: ‘Just not on the tandem with mummy’.  Dylan was silent; he  stared, inscrutable,  through the car window.

 *

Weir Therapy

At the cycle hire all seemed well. It had been raining a little so it was quiet and there were plenty of  tandems available. I decided to book one out for the whole day rather than our usual two hours:  we had a picnic with us and it was still early enough to explore as well as ride our usual route.  Within five minutes of setting off, however, it was clear that something was wrong. Dylan started chanting ‘hego, hego, hego’  (i.e. here we go), not in the excited way he announces the start of something he is looking forward to but repeatedly, meaning ‘I’m not comfortable with this, please stop’.  A moment later, the tandem wobbled and juddered as Dylan put his feet to the ground (something he has never done in all our years of cycling). I pulled up. ‘What’s wrong Dylan?’  I asked. ‘What is it?’  He couldn’t tell me, of course. And I couldn’t figure it.

Time to read a couple of poems…

I set off again but the chanting began instantly and, as we cycled downhill towards the bridge over the lake, Dylan scraped his feet on the ground shouting ‘oops, oops’ (meaning  ‘I’m scared of falling’). I had never known Dylan like this. Unsure what to do I suggested we wheel the bike along the path. This seemed to calm Dylan so after a while I indicated to get back on.  But Dylan was clearly still uncomfortable on the tandem; half way around the lake, a distance from the cycle hire and very close to water, the last thing I wanted was for Dylan to have a full-blown anxiety attack.

For the next hour I took things slowly. We walked quite a lot. We cycled short stretches. I chatted to Dylan while we were cycling to try and distract him from whatever thoughts were intruding. I got us back on the safest and most familiar routes of all the ones we have ever taken in the park. And I headed for the weir which Dylan loves to watch. The water seemed to calm him a little but when we set off again, heading away from the lake and onto a short section of road, Dylan put his foot down. He really did not want to cycle through the approaching gateway.

This is wider than the gate we had fallen at  but still enough to make Dylan nervous.

Then I had a memory. The last time we had cycled in the park I had misjudged the gap between a similar set of gateposts and, for the first and only time in our tandem-riding experience, we took a tumble. It wasn’t a serious spill; we were going at a sedate pace and I took the brunt of the fall and managed to hold the falling bike against me so that Dylan more or less stayed on. But it had shocked him  and he had said ‘oops’ repeatedly as we made our way back to the cycle hire that day. Was that why Dylan seemed so nervous today? Was this now his overwhelming tandem memory?

Once I had made the connection I could sense Dylan’s agitation increasing as we approached the junctions to gated trails.  I made a point of dismounting and pushing the tandem through instead of riding. Slowing to dismount in good time seemed to calm Dylan.  Stopping for a picnic also seemed to help 🙂   Dylan wasn’t completely restored though; he wanted to return the tandem after we had eaten rather than head off again. I persisted gently, building in lots of choice and stops at junctions as well as a detour to look at a ford in the road which Dylan hadn’t encountered before.

 

Transpennine Trail, 2015

I wouldn’t say Dylan was at ease on the tandem but he was certainly more relaxed. ‘Shall we head back’ I said to Dylan, thinking I should end the day while it was good, ‘and have a drink in the cafe?’ At the cycle hire people were returning their bikes in good time. One family walked by with a trike triggering me to exclaim: ‘Look Dylan – a trike like the one you rode with [naming staff at his residential setting]’. Dylan pulled away anxiously, covering his ears and moaning.  ‘It’s alright’, I reassured him, ‘we’re not hiring one now. Mummy was just remembering something’ (I have been working on ‘remember’ with Dylan recently).

I had been astonished, last summer, when a photo of Dylan on a trike pinged into my inbox. I knew cycling on the Transpennine trail was on Dylan’s programme for that day but I’d expected him to be on the back of a tandem. I hadn’t ever hired a trike because, as far as I was concerned, it wasn’t balancing that was the issue for Dylan but being in sole control.  I had spent years riding tandem with Dylan because I thought he couldn’t steer or brake. Had I got things so wrong?  I was delighted at this apparent development but somewhat incredulous. Later I discovered that shortly after the photo was taken Dylan had steered the trike off the trail and taken a tumble.  Twice.  ‘Why wasn’t he on a tandem?’ I asked. Apparently the staff supporting Dylan that day didn’t feel confident enough to ride one.  While I understood this, I didn’t understand the decision to hire a trike instead: ‘Do you want to leave the cycling for now’ I said to the care home manager ‘and I’ll take Dylan at weekends instead’.

Except I hadn’t managed it since, I thought to myself, as we handed our helmets back to the cycle hire.  Dylan was pulling at me, wanting to get away from the trike: ‘Oops’ he said:  ‘oops, oops’. Could this be what he was remembering as well? Not just the spill from the tandem but the tumble from the trike? Dylan dislikes falling; if his previous two experiences of cycling had involved a fall, no wonder he had been reluctant. I was reminded, once again, of how powerful Dylan’s memory is but also of how quickly he loses confidence.  ‘There’s a saying’, I said to Dylan as we sat with our drinks in the cafe, ‘that when you fall off a bike you get back on again. Well done today.  We’ll come back again soon’.

The Familiar And The Strange

Arriving

It’s not surprising that Dylan likes Premier Inns: the rooms are identical, the facilities standardised and the buildings similar in style. Such predictability  can be enabling; I’m not sure Dylan would be as relaxed as he is away from home without the reassuring familiarity of a ‘moon hotel’. When we arrived at a  Premier Inn last weekend, however, I was shocked; the twin room wasn’t configured in the same way as those we had stayed in previously and the narrow space between the beds made them feel more like a double.

In the context of a mother and adult son the room wasn’t acceptable. Dealing with the situation, however, was potentially tricky; Dylan was already looking around, working out where to put his things. If I were to do something about the situation I had to act quickly. I managed to persuade Dylan to leave bags unpacked while we returned to reception. It was a holiday weekend and as I had struggled to find accommodation for the evening I wasn’t confident about my chances but, keeping my voice cheery so as not to make Dylan anxious, I explained the problem with the room.

Once again I was struck by how improved autism awareness is; the staff instantly understood the situation and dealt with it beautifully, identifying  potential solutions and involving Dylan in the process.  Would Dylan like to view an alternative room, one of the receptionists asked? We followed her up the stairs where we were delighted to find a larger room with a bed by the window for Dylan. I am sure that involving Dylan in this way helped him to understand the situation; had I simply negotiated the room change at the desk  then returned to the original room to retrieve our bags he would probably have thought we were leaving and become anxious.  With the visual support of visiting the alternative room, however, Dylan accepted the change without a problem.

*

Departing

This turned out not to be the only disruption to routine Dylan had to cope with; returning to our room after a meal out  I discovered I couldn’t get Brave to play on his ipad mini. As I mentioned in my last post, the ipad mini is a new acquisition. I haven’t used it for Facetime with Dylan yet as I am still trying to get myself up and running with Dylan’s old ipad.  I thought, however, that I’d managed to transfer Dylan’s music and films across to the mini and that all was well. ‘You can watch a film on your new ipad when we get back to the moon hotel’ I had said to Dylan as we left the restaurant.

Fortunately I managed to distract Dylan with a bath when Brave wouldn’t play as promised. The next morning I managed to head off a repeat request with the suggestion of breakfast.  I had figured out that the films Dylan used to have on his old ipad were ‘in the cloud’ on his new mini; rather than available to him at all times these are now dependent on Dylan having an Internet connection capable of downloading them (which the hotel’s free Wi-Fi service was not). This is not ideal and will be very confusing for Dylan who was previously able to watch whenever he wanted. For his technophobe mother, meanwhile, it’s another argument against life’s unremitting upgrades.

*

York Minster

Last weekend’s ‘moon hotel’ was in Chester, a place neither Dylan or I had visited before (except for trips to Chester Zoo which hadn’t involved driving into the town centre).  When introducing Dylan to new  experiences it is useful to make a connection with things which are already familiar. This is true of all learning, of course, but seems to be particularly the case for Dylan who embraces new experiences happily, with confidence, when they are grounded in something he already knows. So my reason for taking Dylan to Chester was the town’s similarity to York, Dylan’s favourite place in the world.

As I have noted before,  Dylan has been visiting York for years; he recognises and collects information about York, says the word ‘York’ beautifully, and spends much of his time looking at pictures of York.  Part of this attraction is the Minster but recently I’ve realised that of even more interest to Dylan are York’s city walls. We have developed a hand sign for city walls which involves drawing a horizontal circle in the air; ‘York’ Dylan says to me optimistically, tracing a flat ring with his finger. Surely, I told myself as we drove into Chester last Saturday morning, Dylan would love it; there was a cathedral, a railway, a river and city walls, just like at York.

Chester Cathedral

Serendipitously we found a mobility car park (hats off to Chester Council) at the entrance to the Cathedral and city walls. Dylan was on alert; he had the quick look about him that means something has caught his attention.  As I switched the car engine off I turned to him and drew a circle in the air; ‘there are city walls here’ I said. I didn’t need to tell Dylan; he had already clocked them.  As we emerged from the car park into a stained glass dazzle of light I wondered if Dylan might head into the Cathedral first? But no:  off he tore, anti-clockwise, around the walls.

*

City Walls, Chester

Perhaps Dylan likes city walls because the way they encircle an area is intuitive to him and feels comforting.  When Dylan was very young – before we realised he was autistic – one of the things he did was stake out perimeters. It’s quite a common behaviour among autistic children: lining objects up around edges, creating boundaries. Before I knew it wasn’t playing I used to smile at Dylan’s imaginatively-placed bricks and cars and tea set pieces. The first time I remember puzzling at it was on holiday in France when Dylan was 16 months old.  As we only had a few toys with us Dylan emptied the kitchen cupboards of pots and used those instead.  I have a memory of watching him scratch his head like an old man as he surveyed a border he’d built around a room with cups and plates and saucers. There was something about it that didn’t seem right.

Looking back I can see that being taken into a new environment with differently-configured space must have been very confusing for Dylan. With no knowledge of his autism, I wasn’t looking out for Dylan or mediating the world for him as I do today. For the undiagnosed child, the world must seem a very scary place indeed. Now I can smile because I understand that  Dylan’s attempt to impose order on the holiday cottage was smart; he found the pots, on his wobbly toddler legs, and did his best.

River Dee, just outside the Walls

Later, I would watch Dylan mark territory with his body: pacing the edges of a library or art gallery; establishing a boundary in a park or field; setting himself limits when visiting friends. ‘It’s alright’ I would say, ‘once Dylan fixes his boundary he’ll keep within it’. It is a way of mapping but also a safety mechanism; when Dylan has paced a border, or marked a route, he seems to feel less anxious about inhabiting the space. I think this is partly about his location in relation to others but is also about his embodied self; he needs to know where he is in relation to himself as much as to the outside world.

*

Dylan with his book

As well as visiting Chester Cathedral we visited St John the Baptist’s Church, Chester’s  original Cathedral.  There was a second hand book sale in the church and Dylan went rummaging, returning with a Thomas the Tank Engine book (no surprise) and a coffee table book (which was unusual). ‘What is that you’ve got, Dylan?’ I asked, pointing to the large book under his arm as I helped him find his purse.  ‘York’ he replied.  The book was called ‘Colourful Britain’ and had photographs of various iconic locations in Britain. The reason Dylan wanted the book was the photo of York Minster on the cover.

Was Dylan making an explicit link between the town we were visiting and his beloved York? Could his experience of somewhere strange be helping him re-think the familiar? As I wondered this I recalled how, at Dylan’s age, I had spent a year in the USA as part of an exchange programme. As Christmas approached one of my English peers felt so homesick she decided she would go home for Intercession. I hadn’t settled either but I didn’t want to spend money on a round trip flight to England; I decided to go travelling in Mexico instead.

Magnolia, Chester Cathedral Garden

Those weeks turned out to be some of the most difficult of my life; I got into scrapes I shiver to recall 35 years on. But one of the positive things that came out of the experience was that when I made it back to the University of Massachusetts it felt different. I remember how relieved I was to see the vast campus (which before Christmas had seemed so alien) and hear the American accents telling me they would see me later (which had seemed unintelligible before but was now reassuringly familiar).  It was wonderful to be back, I told my friend Nettie: it was as if I’d come home. 

*

Water of Life (Garth, 1992)

Before we set off to drive back over the Pennines on Saturday evening I showed Dylan his programme for the next day and week ahead. The plan was that I would return Dylan to his residential setting  but I wasn’t sure whether Dylan would accept this; usually I see him Saturday/Sunday at home rather than Friday/Saturday away from home.  I pointed at the symbols and photographs and tried to explain, reassuring Dylan that he would see me as usual the following weekend.  I fell silent, wondering if he had understood. Dylan looked  at his programme and pointed to the photo of our house:  ‘Home’, he said to me.

This is the first time Dylan has said ‘home’ unprompted. I have never been sure whether or not he understands the word or knows where home is – and since Dylan moved to residential care I have become even more confused about this. Should I call his care home ‘home’, I have asked myself,  or the house where we used to live together and which he now only visits?  I have kept fudging this, never quite sure what to say. But Dylan seems to have it figured out. Perhaps moving to residential care has given Dylan a stronger sense of home in the same way that I came to appreciate the familiar through the strange at his age?

‘Yes Dylan’, I replied: ‘That is our home’.