iPad Sabotage: Dylan Loses His Music

In my last post, Selfie Sabotage, I reported that Dylan seemed anxious about people taking photographs by camera or mobile phone. This is now written into Dylan’s care plan so he is no longer exposed to photography at the care home or while he is with me.  Although this has involved a change in practice, I have found it surprisingly easy to put my phone away while I’m with Dylan. Last week I took Dylan to Marske-by-the-Sea for his summer holiday. As well as spending time on the beach we visited places I would previously have photographed but which I didn’t even consider getting my camera out for. It’s reassuring to me that habits can be quickly and painlessly changed when necessary.

My impression is that the ban on photographs has made Dylan more comfortable and I’m pleased I spotted that this was an issue for him.  Something that struck me last week, however, is that anxiety about photographs could, in time, be replaced by something else. Because I wasn’t able to take photographs, I made written notes about our trips and the places we visited instead.  By the end of the week Dylan was shouting ‘pen, pen’ at me every time I got my notebook out. 

Turkle and Technology

I was minded of Dylan’s phone-phobia recently while reading a Jonathan Franzen essay on Sherry Turkle (a ‘technology skeptic who was once a believer’). Children, Turkle writes,  ‘can’t get their parents’ attention away from their phones’. The decline in interaction within a family, Turkle suggests, inflicts social, emotional and psychological damage on children, specifically ‘the development of trust and self-esteem’ and ‘the capacity for empathy, friendship and intimacy’.  Parents need to ‘step up to their responsibilities as mentors’, Turkle argues, and practice the patient art of conversation with their children rather than demonstrating parental love (as Franzen puts it) ‘by snapping lots of pictures and posting them on Facebook’.

Turkle’s points about the impact of technology on child development could perhaps also apply to Dylan. If patience is a necessary quality when engaging a child in conversation, this is even more the case when communicating with someone who is non-verbal. Although Dylan is an adult in terms of chronological age, cognitively he is around five years of age (according to best attempts to assess this). Certainly, I would identify the development of empathy, trust and self-esteem as relevant to his nurturing and care. 

If there is any chance at all that exposing Dylan to technology could be limiting his opportunities for development then of course I should follow Turkle’s advice.  But perhaps Dylan intuitively knows this?  His protests about my phone were maybe because he wants my undivided attention – in which case, having to wait while I write in my notebook might be just as irritating to him as waiting for me to take a photo. Reading Franzen’s essay brought to mind another technology-related issue that I’ve had to deal with in relation to Dylan’s care recently. Rather than Dylan being the one protesting about the technology (as with phones and cameras) however, in this instance I have been the one doing the sabotaging.

Dylan’s iPad

Dylan has been using an iPad for years, primarily to access CDs and films he has purchased and downloaded and which he can watch offline. Previously, Dylan had portable DVD and CD players for this purpose but the iPad proved a better option practically and for promoting independence. Although initially intended for use during journeys and holidays, Dylan became increasingly attached to his iPad and built it into his daily routine, often preferring it to his TV or over other activities.

Recently, however, a problem emerged. On a number of occasions, Dylan managed to ‘lose’ the music he had purchased. This happened every three months or so, always while Dylan was at his care home.  Staff didn’t notice Dylan’s music had disappeared but they did report ‘challenging incidents’ for which there was ‘no apparent trigger’. Dylan would, however, show me that his music was missing when he came on a home visit and I would then have to set about fixing the problem. This was more complicated than Dylan merely ‘hiding’ the purchases (for which there are retrieval instructions) and required Apple technicians recovering the music so that it could be re-downloaded to Dylan’s iPad. The technicians were always professional, efficient and impressively competent but the process was time-consuming and frustrating. 

After the third fix, I asked if care home staff could provide more support to Dylan while he was using his iPad and suggested that they check it regularly, particularly if Dylan seemed frustrated or upset. When Dylan presented me with the problem again, just a week later, I decided a different solution was required.  Fair enough to fix something once or twice, but Dylan’s iPad seemed to have become a source of stress rather than a resource. How had this problem developed and why was it happening more regularly? I checked the stats to see how long Dylan had been spending on his iPad. Quietly aghast, I opened my secret drawer – the one where Dylan doesn’t know to look – and slipped the iPad inside. 

Intellectual Disability and Technology

It is very hard to remove something from an adult, even when they lack the capacity to make decisions and need someone to act in their best interests. Dylan had been using an iPad for years and it had a key role in his life. I was aware that in removing it I could create more problems than I solved. The iPad, however, was itself the source of some of the difficulties which Dylan was encountering.

Tech companies do not have intellectually disabled adults at the forefront of their mind during research and design and, as consequence, even the most intuitive apps and products are not always accessible, particularly to those adults who do not use speech to communicate (i.e. who are not literate and who cannot process spoken language). Although there are some great pre-school and pre-linguistic resources on the market, Intellectually disabled adults are not pre-linguistic children, they are adults who do not (and probably are not going to develop) spoken and/or written language. 

Like the school curriculum, technology is language-based and thus inaccessible to people who do not use language to communicate. It is sometimes possible to adjust a setting on a device so that it uses visual information. For example, Dylan is perfectly able to choose between the album covers of his music downloads. Apple’s default setting, however, is to display his music alphabetically, by artist/CD name. Dylan cannot read the text so he has no idea where to click. If his iPad defaulted to the text-based rather than visual setting (which it did, with every upgrade) Dylan would become disoriented and distressed. 

This has always been an issue for Dylan, but the problem seems to have become more acute since January when Apple rolled out a major upgrade to their music streaming service. Of course, what Apple want is for people to use their Music streaming service rather than purchase albums as Dylan does.  However, Dylan is not able to use the streaming service because it is language-based.  He needs his pre-purchased music, visually displayed. When it isn’t available to him in accessible format, Dylan tends to press keys and click icons and hit whatever message (language-based, which he can’t read) appears on the screen. I assume that it is at these times that Dylan manages to alter his settings and services.

The Apple Scruffs (my affectionate name for the wonderful telephone support guys) are happy to support me to recover Dylan’s music as often as he needs, but clearly it would be better if he wasn’t able to lose it in the first place.  One of the Scruffs advised that I send some feedback to Apple, suggesting that they put an option for preventing the removal of downloaded music on Parental Controls. I never had a response to that request  – presumably it isn’t a priority as Apple want to encourage the use of their subscription streaming service rather than downloaded purchases. So, as things stand, Dylan has hundreds of pounds worth of films and music which he has bought via iTunes, but which he cannot use. These will, of course, remain his personal purchases and at some time in the future, hopefully, he will be re-united with his iPad and able to enjoy these again. At least, that’s what I’m telling myself …

Support and Technology 

What the recent problem with the iPad has demonstrated is that, given the built-in obstacles in the technology, Dylan requires support to use it. Dylan generally recognises when he needs support with something language-based and will request this.  However, the personal usage data suggests that Dylan had been spending significant amounts of time on his iPad. The reality is that if staff are not available (or able) to support Dylan with the technology, rather than a resource it becomes a source of frustration and anger, leading both the technology and Dylan to breakdown.

When I confiscated Dylan’s iPad I was aware this would be difficult for him. I told Dylan the iPad was ‘broken’ (which Dylan knew because he had shown me that the music had disappeared). This time, I told him, it had to ‘go to the shop’ to be fixed, but for how long would he accept that story? Confiscating the iPad would also be challenging for support staff. Not only would they have to field Dylan’s questions and manage any incidents arising from my removal of the iPad, they would need to find something else to occupy Dylan’s time. Turkle might approve of what I had done, but I wasn’t sure the care staff would.

I held my breath as I explained to the team leader that I was returning Dylan to the home without his iPad. To my surprise, she reacted positively; she’d had a hunch, she said, that many of the ‘incidents’ involving Dylan were caused by his frustration with his iPad. Perhaps removing it would reduce Dylan’s stress and mean there were fewer incidents of ‘challenging behaviour’? 

Dylan and Technology

At the time of writing (11 weeks after I confiscated the iPad) there is some evidence to suggest that the iPad had become a source of distress for Dylan rather than a support; certainly there has been a reduction in the total number of incidents when Dylan has become upset at the care home. I’ve been most struck, however, by the ease with which Dylan has accepted the change. Just as I quickly got used to life without my camera phone, so Dylan has adapted to life without his iPad. He asked about it a few times in the early days but hasn’t mentioned it (at least to me) for weeks. 

Going on holiday last week presented me with a dilemma, however.  Dylan would need access to his music and films while we were away. Should I produce his iPad (music restored)?  If I did, Dylan would expect to keep it on our return from holiday and the cycle would begin again: staff not available to supervise –  Dylan spending too much time on his iPad –  music lost –  Dylan frustrated – challenging behaviour –  me back on the phone to the Apple scruffs. Nothing about that felt positive. So instead, I bought a portable DVD/CD player for Dylan to take on holiday with a selection of discs.  Old technology it may be, but it worked a treat.

In terms of new technology, the dream for the future is that tech companies give more thought to designing (or adapting) products so that they are accessible to adults who are non-verbal with intellectual disability. Perhaps that’s a pipe dream. In the meantime, it surely isn’t too much to ask that all disabled adults in care receive the support they need to access technology safely and effectively?

Notes:

The photos of Sherry Turkle and the iphone are free stock images. The other photos are of Dylan’s iPad and were taken by me. The final photo is the view from a window of our holiday cottage in Marske-by-the-Sea, taken opportunistically one morning while Dylan was still sleeping.

Johnathan Franzen, ‘Capitalism in Hyperdrive (on Sherry Turkle)’, pp 67-74, in The End of the End of the Earth:  Essays (Farrar, Straus and Giroux, 2018)

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 21st 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 26th 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 17th 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 21st 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).

Better Safe Than Sorry

In my last post I recounted some of the challenges involved in teaching Dylan to say sorry and to understand feelings of remorse. The following week I found myself in the car park of Dylan’s care home gesturing, gesticulating and trying to communicate, in simple terms,  the enormity of an incident which – I told him, shaking my head and wagging my finger – he must never, ever do again. He stood stock still, staring intently at me.  ‘Sorry’, he said.

But Sorry is not enough this time.  The thing is to be safe…

Telephone Call

By chance I was ten minutes away from Dylan’s care home when I took the call. I had arranged to meet a friend at the cinema that night.  ‘I’m just going to check all is well with Dylan’, I said to her as I arrived.  ‘I missed a couple of calls while I was driving’. ‘At least we’re nearby if not’, she replied, rolling her eyes. 

In the pub, before the film,  I kept trying the care home number.  It’s always difficult to get a pick-up in the evenings. Finally, success. The reassurance of ‘Don’t worry, Dylan is safe’ quickly gave way to numbness at the realisation that he could as easily (more easily) have not been. ‘Dylan could have been killed’ I exclaimed as the full implications dawned on me. My friend raised her eyebrows at me, quizzically. 

I was glad she was there and that we had plans for the evening. Otherwise, I would have spent the time upsetting myself by going over and over what I’d been told or rushed to the setting to fetch Dylan home. Neither of these would have been helpful. Dylan was OK. But he could so easily have been hit by a car in the busy rush hour traffic on the road which he (inexplicably) crossed having (inexplicably) run from the garden, across the car park and (inexplicably) down the driveway of the home. Totally unexpected. Unpredictable. Inexplicable.  

But there would be time to look for explanations later…

 Little Boy in a Green T-Shirt

In the seven years he has lived at the care home Dylan has never attempted to leave the setting. He doesn’t have a history of running away although he will run towards something he wants and can see (sweets, for example, or DVDs). Although Dylan isn’t technically an ‘absconder’, the risk of him running from carers is written into his care plan. 

Caring for an autistic child or adult with learning disability develops a custom and practice alongside a care plan. It’s important to consider all the possible scenarios while risk-assessing and developing plans.  In everyday practice, however, many of the policies are not required. Routines become familiar. Safe practices are  embedded.  We establish a norm. What made Dylan break that norm? Why, out of the blue, did he run away from the setting instead of taking the few steps from the garden back into the home? 

In the pub, trying to process the phone call,  I remembered the little boy in a green t-shirt. He would have been ten years old perhaps.  The doors were locked. Early evening. Not long home from school. His mother was busy preparing his tea. Veggie sausages and chips maybe.  Something the little boy liked.  She still doesn’t know what made her walk away, leaving an unguarded pan on the stove.  She wouldn’t normally have done that.  She could find no explanation later (just luck) for why she had walked into the front room. There was nothing she needed there.  Nor could she tell why she had walked to the bay window and looked out of the window and down the road. But when she did she noticed a little blond-haired boy in a green t-shirt across the road, heading down the street.  ‘That little boy looks like Dylan’, she thought to herself.  Then ‘Dylan! Dylan! Dylan!’ she screamed.

Afterwards,  – after I had gone screaming out of the house then had the presence of mind not to shout Dylan’s name –  not  to startle him or do anything to make him run – after I had composed myself enough to calmly call  ‘Wait Dylan. Stay there’, then dashed across the road to scoop him in my arms – after I had said ‘never, never’ and tried to communicate what he must not do again – after I had not just locked the door but removed the key too (so, he can turn it now, I thought to myself) –  Afterwards, I had asked myself why Dylan would leave home while I was cooking tea? Surely that should be the least likely time?

But with someone like Dylan, you have to be ready for the out of the blue…

‘Dylan Won’t be Coming Next Week’

Later, I remembered that there had been another time. I don’t have a strong memory of it because the details reported at the time were sketchy. Enough to terrify me though – enough for me to have blocked the memory, buried it deep in my core. While I don’t recall exact dates, I’m pretty sure Dylan still had that green polo shirt. Eleven years old perhaps? My ex-husband and I were not long divorced.  I was working full time and struggling to get chores done. I couldn’t take Dylan to the supermarket.  No online shopping back then. My daughter to get to Stagecoach too. I just couldn’t manage Saturdays. So, I enrolled Dylan in a play scheme at a local Inclusion Centre.

The Centre came highly recommended by parents and professionals and the shadow visits seemed to go OK.  I had the usual anxieties about leaving Dylan to the care of others when the time came, but no reason to doubt the processes in place or my decision. But when I collected Dylan that day – just two hours after I had left him for the first time – I was told (casually? or is that a false memory?) that Dylan had managed to give play workers the slip and leave the setting by a side door. It was alright, I was told – Dylan had been recovered from the Penistone Road, kept safe by passing police.

The Penistone Road. Everyone in my city knows the nose-to-tail horror of that mad arterial road north out of the city, past the Sheffield Wednesday football ground.  When the children were small we drove that road daily for work and school and friends and family.  Once, I had found my young daughter and step-daughter with Dylan’s cars lined up bumper to bumper through the house – starting at the back door then through the kitchen and dining room, into the lounge and up the stairs. ‘What’s going on here, girls?’ I’d asked them, picking my way through the cars. ‘Does Dylan know you have these?’.  ‘We’re playing Penistone Road’, my step-daughter replied.  I remember telling my ex-husband, worrying about the amount of time the children spent commuting.  That’s where Dylan was found that day.  Wandering on the Penistone Road…

It’s hard to hear something critical in the presence of Dylan. Because he picks up my mood I have to stay calm while I’m supporting him, however I feel inside. This can be a battle sometimes.  It means I have to push upsetting news on the radio or telephone out of my head and smile. It means that discriminatory members of the public (fortunately rare) rarely feel the cut of my sharp tongue. It means care workers can deliver difficult news without facing difficult scrutiny or question, at least at point of delivery.

But I was shaking as I delivered my parting shot that day.

Three Lives

The child in a green t-shirt.  The boy on Penistone Road. The young man running from the care home. Dylan has used up three of his lives, it seems. On each occasion he was being supervised by a parent or professional who believed Dylan was safe. Each time, he evaded their care, placed himself at risk. How do we keep children and adults who lack capacity safe? How can we plan for the unpredictable and unexpected – the ‘never before’ – without leaving life a dull and limited thing, removing the space a person needs to breathe?

No one ever thought that the large and heavy gate at the entrance to the care home was necessary before Dylan squandered his third life on the road that day. Now, it is kept firm closed against the unexpected and unpredictable. A holding measure against runaways. A reasonable restriction on freedom. It brings peace of mind,  but for me the more interesting boundaries are not physical but in the mind. Why did Dylan tacitly consent to observe the boundaries without a gate for seven years?

The thing is, I told myself, to try and understand what caused Dylan to run away. So, I looked at the number and type of ‘incidents’ recorded for Dylan in the previous three months. There were some patterns. Dylan’s most serious incidents seemed to happen in the car park, a place of transition where physical and psychological boundaries are less clear. More permeable. Perhaps an activity hasn’t ended as Dylan expected or he isn’t ready to move to the next. Maybe there are too many or not enough cars. Carers may be differently preoccupied or behave differently. The wind might blow a memory of another day.  Different possibilities and opportunities may present themselves. Perhaps some of these things lined up for Dylan that day.  Or maybe there is something else I need to take away?

Only writing this today has it occurred to me that the little boy in the green t-shirt and the boy in the traffic on Penistone Road might have been reacting to disruption in the aftermath of a divorce. Why, I wonder, didn’t I consider this at the time? I know from my daughter and step-daughter how painful the breakdown of a marriage is for children.  We watch our neurotypical children and teenagers behave in unexpected, unpredictable and sometimes unsafe ways at such times. Why not Dylan? It seems entirely plausible to me, now,  that his leaving the family home and running away from Saturday Club could have been expressions of his confusion or unhappiness at the time.

But what, I wonder, might Dylan be expressing now?

Sorry Is Not The Hardest Word

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

Scripting

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

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

‘Hey!’

‘Back’

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

Sorry

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

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

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

Dylan that hurt. What do you say?

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

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

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

Remorse

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

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

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

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

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

Sorry By Any Other Word

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

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

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

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

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

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

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

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

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

 

Canaries, Covid and Christmas

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

Canaries

Coal miners carried caged canaries into underground tunnels as the birds would alert them to the presence of noxious gases. I think of Dylan as a sort of ‘pit canary’ for the environments we have to negotiate in our daily lives.  If a place or situation triggers ‘behaviours’ in him then It might suggest that there is something stressful about the circumstances which could potentially unsettle any of us.  

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

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

Testing Times

Speaking of Arenas, I was relieved to be able to take Dylan to his beloved Disney-on-Ice at Sheffield Arena last month.  It’s become an annual Christmas tradition for Dylan and one that he missed terribly in 2020 when it was cancelled due to Covid-19. I optimistically bought tickets for this year’s show and crossed my skates that it would go ahead. 

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

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

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

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

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

Back to the Moon

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

In November Dylan thoroughly enjoyed an overnight stay at the Premier Inn in Cleethorpes. We have visited the resort regularly as it’s the closest coast to our home city but we have never stayed overnight.  On previous day trips, Dylan has pushed and pulled and cajoled me to the Premier Inn so that he can stand and gaze at it. He was needless to say in high excitement that this time he got to go inside (with a pumpkin lantern and Doctor Who).

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

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

First Christmas 

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

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

Another Covid Year

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

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

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

Thank you for following our blog in 2021

 Health and Happiness in 2022

Weighing the Cost of Caring: From Barriers to Golden Gates

I’m happy to report that Dylan hasn’t had any further seizures. In fact, he is in quite a settled period with few of the behaviours which were previously causing such concern.  Still, I’m having to practice vigilance and learn new habits. On a recent trip to the coast, for example, I realised at the last minute that I would need to bring Dylan’s epilepsy pillows and overnight monitors. I was anxious about taking Dylan away by myself but decided it would be sad  to stop doing the things that make Dylan happy. Good call.  We had a fabulous week.

While we were away, I was weighing my options. I’ve been eligible for retirement since I turned 60 last February but it seemed I should continue to work. My pension is modest and below the level recommended for retirement income. I will be OK once I can claim State Pension but that is still some years off, given the recent rise in retirement age for women.  That could sound as if I have been foolish or profligate which isn’t the case. The reality is that carers face a range of obstacles in the work place which limit their opportunities and which carry economic as well as socio-psychological penalties. 

Those of us who maintain a career while caring for a family member may choose not to focus on the financial implications while working, but they cannot be ignored in the final reckoning. This post is an attempt to acknowledge those barriers and the impact they have on carers generally and women and single carers in particular.  

Barriers

Across all sectors of employment, carers of disabled family members are likely to take time out of the workplace, to work part-time and to take periods of unpaid leave to fulfil their caring responsibilities. I have had to do all of these things and l have witnessed colleagues with caring responsibilities do the same. This pattern of combining unpaid care work with paid employment has a significant impact on overall years in service and thus on pension contributions. 

This cost can be more easily absorbed or offset where two parents are working but takes a painful toll on the pension of a single parent. While divorce law now acknowledges these periods of unpaid work, and the parent who has provided unpaid care is entitled to access pension benefits earned by his/her partner during such periods, those single carers who divorced before the mid-noughties bear the cost of those years together, alone (unless they had a particularly good divorce lawyer). So, it makes financial sense for parents of a disabled child to stay together if at all possible. 

Where this isn’t possible, the lone parent not only has to accept reduced years of service through breaks in and part-time employment, they also face a range of in-service barriers. These vary across employment sectors but in my own field a key barrier was not being able to attend the events, such as conferences and seminars,  which support career progression. The difficult of securing twilight, overnight and holiday care for a disabled family member effectively excludes carers from these opportunities. Furthermore, the expectation that activities to support career progression, such as research and writing for publication, is conducted in the employees ‘spare time’ (i.e. at home) also operates as a barrier for carers.

Opportunities

But (I’ve always maintained) every barrier creates an opportunity. At a psychological level, the very existence of an obstacle can motivate us.  Thus, I had been successful in gaining a promotion to middle management which meant I was able to offset some of the impact of divorce and caring on my longer-term finances. I’m glad I took that opportunity. It is too easy for carers not to put themselves forward for promotion for fear it won’t prove possible to juggle such responsibilities with the unpredictable and sometimes all-consuming demands of caring for a disabled family member.  

Indeed. Seven years after my promotion, I resigned from the management team because life at home was overwhelming and I didn’t feel able to manage my responsibilities at work as well as home. Dylan had left full time education but not been allocated a suitable adult placement.  He was in crisis. Simultaneously, my daughter had a medical emergency which meant she needed nursing care. All I could contemplate was being available for my children.

I needed more support at a transition point which requires many parent-carers to make adjustment to their own lives in order to accommodate the different pattern of care in adult services.  This situation is usually temporary.  The decisions about work and careers which carers make at this juncture, however, can carry permanent financial hurt. Certainly, I found myself half-wishing, after Dylan was settled again, that someone had guided me to take sick leave or negotiate a temporary release from my management role, rather than resign.

But (to return to opportunities) the other half of me acknowledged that the decision I made allowed me to focus more attention on securing an appropriate placement for Dylan. Furthermore,  once Dylan was settled in an adult placement, my demoted role provided me with the opportunity to develop my practice as a teacher and to focus more  energy on the students. While these things haven’t helped my pension, their contributions have been rich in other ways and have sustained me for the seven years since I left the management team. 

Being Brave

Dylan’s recent epilepsy diagnosis prompted me to re-evaluate my situation. I recalled how I had taken a career break following Dylan’s autism diagnosis at the age of two. ‘Early intervention’ was said to make a significant difference to outcomes for autistic children and I had been determined to give my son the best chance, whatever the cost. While I don’t think my career-break made any difference to Dylan’s trajectory,  it had a significant impact on my parenting skills.  Perhaps resigning would help me to understand Dylan’s epilepsy just as my time out of the workplace 25 years ago had helped me  to understand his autism? 

Did I really need to take such a radical step given the financial implications? Could I not continue to work while supporting Dylan? Combining work with care seemed to me to be increasingly untenable. Earlier in the year I had cared for Dylan at home for six weeks because I was concerned about him.  Although I didn’t realise at the time, Dylan’s behaviours were probably linked to his epilepsy. I managed to keep working during that period but it had exhausted me. I knew I couldn’t do that again. What if Dylan needed to come home in future? Even if I didn’t take over his care, I would want to be available in the event of further seizures.  Many adults with epilepsy are able to manage their life perfectly well with medication and hopefully this will be the case for Dylan. It is too early, however, to know what the future holds and during this early period of adjustment my instinct was to prioritise Dylan, not my job.

While I was weighing the costs of resigning against the benefits, some voluntary redundancy packages were offered to middle managers by my employer.  I expressed an interest, noting that I had worked at that grade before resigning due to caring responsibilities. I explained I would need to re-prioritise those responsibilities over the coming year and would  be interested in negotiating a package to enable me to leave. I hoped that my length of service and contribution, as well as my role as carer, might carry weight. Supporting carers to work effectively, I would argue, should include enabling them to leave a workplace (temporarily or permanently) when required, through appropriate, equitable and commensurate financial acknowledgement. 

Sadly, we are not yet at that point in terms of inclusive practice. While there are some good equal opportunities initiatives in the workplace, the particular needs of carers are largely ignored and unrepresented.  Given the lack of prioritisation of social care, it seems unlikely that a Government, or employer, would be brave (or flexible) enough to offer a decent scheme of support for carers in the workplace. In its absence, it is the carer who must stay brave. Being refused a leaving package appeared (on paper) to be a final barrier to retiring but, I decided, there are other ways of weighing work and care and I resigned anyway.

The Golden Gates

Two weeks into retirement, I’m feeling optimistic about the future. Although I’m frustrated that a lifetime of working and caring has not resulted in a living pension, the situation has spurred me to think creatively about options I could pursue in the future, once Dylan is settled. I already have plans for some part-time projects focused on writing. These will represent a return to my first love and the prospect fills me with excitement for the future. I  doubt I would have had the courage to give up work for writing without the events of recent months. The obstacle course of caring could, again, become a path with golden gates.

The photos were taken on the Lincolnshire coast in September.

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.

Parent, Carer, Deputy: Lockdown and Identity

This summer I’ve been working on an academic article about parental experiences of the transition of adults with autism and intellectual disability to residential care. While reading the literature I was struck by one parent’s observation that ‘Parents don’t see themselves as carers, not at all, not until they got to an adults’ service’ (Unwin et al, 2008, p. 24).

Although parents of disabled children and adults are also caregivers, the terms are not equivalent even if used interchangeably. ‘Carer’ seems to emphasise a relationship which is practical and prescribed, rather than emotional and  intuitive, a set of behaviours rather than feelings.

Parents whose sons and daughters are disabled need to be parents, even though their role may also involve care-giving. And children and adults with disabilities need their mothers and fathers to respond to them as parents, not just as providers of care. I’ve been reflecting on these  multiple identities recently as my role in Dylan‘s life has changed.

Parent-Carer

When Dylan turned 19 I noticed a shift in language overnight. When completing paperwork on Dylan’s behalf, or acting for him at meetings, I was described as ‘carer’ rather than parent. I learned about the ‘carer’s allowance’ (which I wasn’t eligible for) and the ‘carer’s assessment’ (which I was). Publications aimed at families supporting disabled adults referred to me as a ‘carer’.  Support and online discussion groups also tended to use the term ‘carer’. In time, I adopted the language and applied it to myself without question.

When Dylan moved to residential care two years later I had to redefine my role. I found I could reclaim my identity as Dylan’s mother (at least during the week) as he was now cared for by professionals. When Dylan came for home visits at weekends, however, I was his ‘carer’.  I was still his mother, of course, but my responsibility for supporting Dylan to bathe, dress, eat and access the community safely, and to respond appropriately if he became anxious or distressed, meant that my primary identity was as ‘Dylan’s carer’.

This shift in identity which parents undergo as their adult child moves to residential care is at the heart of the article I am working on at the moment. One of the key themes in the paper is that it is through partnership with the residential setting that parents are able to reconstruct their identity in relation to their adult child. An effective partnership with a residential setting , the literature suggests, is built on a range of factors including sharing of expertise, dialogue and participation in decision-making.

Losing My Identity

Although my experience of Dylan moving to residential care was generally positive,  a couple of years into Dylan’s placement something happened which undermined my confidence in my role and identity. At what I assumed would be a routine meeting to review his care, the panel member representing Dylan’s funding body asked on what grounds I was attending the meeting.  As Dylan’s mother, I replied.  But what was my official role, she asked? She passed me a form and asked me to indicate which of the descriptions applied to me.  Did I have Power of Attorney, for example.

What transpired from that meeting shocked me.  After a disabled child moves to adult services, parents no longer have a voice in decisions affecting their life.  While this is perfectly reasonable in cases where disabled people are able to represent themselves, adults with a learning disability may need someone to support and to represent them. However, Dylan’s disability is severe enough for him to be assessed as lacking capacity under the Mental Health Act (2005) which means he is unable to appoint another person to represent his interests.  I therefore had no legal grounds or basis for involvement in decisions about Dylan’s life.

While it is good practice for funding bodies, residential settings and professionals to involve family members in these processes, the views of families don’t have to be accommodated. I was allowed to remain in the meeting but the panel member who had questioned my role in proceedings made it clear my voice did not carry the weight of others. I listened helplessly to discussions about which number to assign Dylan within each of the domains by which adults with disabilities are assessed. Were Dylan’s communication needs low, moderate, high or severe? I didn’t agree with the suggestion made and tried to challenge it with evidence from  my life with Dylan. The panel member stopped making notes while I spoke.  There was space at the end of the form for parents to express their views, I was told.

The review meeting lasted nearly three hours.  I drove home afterwards with mounting anxiety. If a disabled adult has the capacity to appoint a parent (or someone else)  to represent them then they can get their voice heard. But if an adult lacks the capacity to appoint a representative – well, then they have no representative. Dylan had no voice. No advocate. No one whose main concern was his interests. The funding body were juggling budgets to meet the needs of hundreds of adults. The care provider had other residents to consider as well as their own business interests. Professionals attending a meeting may never have met the person about whom decisions are being made. After years of advocating for Dylan I no longer had a role in his life.  I had let Dylan down. And I had lost my identity.

Lacking Capacity

I found this experience difficult to process. I was embarrassed that I’d been erroneously referring to myself as Dylan’s Power of Attorney.  I was aghast that it had taken me over two years to realise.  I was surprised that no one at Dylan’s residential setting had alerted me to the situation. Mostly, however, I was alarmed by the implications for Dylan.  Presumably this is how authorities can withdraw funding to disabled adults without challenge?  Presumably this is how a disabled adult can be moved hundreds of miles away from home, against the family’s wishes?  Presumably this explains the media interviews I had seen with distraught family members, unhappy about their adult son or daughter’s care? I knew that I had to do something. That unless I did, Dylan would be constantly vulnerable to decisions being made about his care by people who didn’t know him or who didn’t have the capacity to put his interests first.

In the aftermath of that meeting I embarked on a long and difficult process to be appointed Dylan’s deputy in relation to Property and Affairs and Personal Welfare.  These are two separate roles, both requiring a Court of Protection (COP) Order. The application to the COP to be appointed deputy is a two-stage process.  Initially, you have to demonstrate that the adult for whom the application is being made requires a deputy.  If you are able to demonstrate this then you receive permission to proceed. The second stage of the process concerns the suitability of the applicant to fulfil the role of deputy.

This might not sound difficult on paper but in practice there are some significant barriers. Perhaps foremost is that the deputy system has not traditionally been applied to people with learning disabilities.  More commonly, it  has been used for adults who have lost capacity (rather than who never had it) or who require decisions to be made in relation to medical interventions. As such, it can be difficult for families to demonstrate that a learning- disabled adult requires a deputy. Recently, the families of three young people challenged the current welfare deputyship law through a test case in which lawyers argued that the Code of Practice which guides the courts’ interpretation of the Mental Capacity Act should be amended.  Justice Hayden subsequently ruled (June 25, 2019) that the wording of the Code of Practice should be revisited but suggested that in the majority of cases a welfare deputy would not be necessary. Would that verdict support or undermine the case I would make in relation to Dylan? It was hard to tell.

The current welfare deputyship law was not the only barrier. The legal costs associated with an application to the COP to be appointed as a deputy are high.  I spoke with a number of families who had already made deputy applications. Some had been successful and some not. One family who had been rejected initially but who made a second successful application reported total legal fees of £18, 000. More commonly I heard from families who had spent between £3, 000 and £6, 000 on the process. I would have to prepare and submit the application myself, I decided, without the help of a lawyer.  Even then, the cost of lodging property and affairs and personal welfare deputy applications with the COP would be close to £1,000.

Although court fees can be reimbursed, payment is upfront. This makes the system out of reach for some families. Access to a representative should not be dependent on the ability to pay. And what about disabled adults who don’t have anyone to apply to be deputy for them? I would argue that every person deemed to lack capacity should have a deputy appointed on reaching adulthood – not necessarily a family member (as not every parent or sibling would be able or willing to take on the role) but someone to represent a person who is not able to self-advocate. Otherwise, those making decisions about the lives of adults who lack capacity are the funders and providers of care.

Becoming Deputy

I felt reasonably confident that I had the skills I would need to undertake the process myself. I quickly discovered, however, that it was not going to be easy. Little information was available to parents about the deputy system.  Dylan’s residential setting could not advise me (although they put me in touch with someone who could).  The National Autistic Society were no help (I found more information via MENCAP). Internet searches left me confused and despairing.  Luckily, a friend who was slightly ahead of me in the process was generous with his experience.  Michael is a long-standing  activist for families of autistic children and adults, having been instrumental in founding the National Autistic Society as a parents’ organisation when his own son was diagnosed as autistic in childhood. The advice and encouragement I received from him kept me going many times over what turned out to be a two-year journey.

I found the multiple forms that had to be completed not so much difficult as time- consuming and cumbersome. It was hard to figure out which forms to complete and to learn the language; I frequently started over or changed my mind about what was needed.  Some of the information I needed took time to gather.  Sometimes I put the forms aside while I waited to see what would happen to in a court case. Mostly, I struggled to find the time to give to the process while working full-time, caring for Dylan at weekends and trying to finish a long-overdue book. So, I worked at the forms slowly, occasionally being swept into frantic action by a new alarm or worrying development.

Finally,  at the end of last summer, I submitted the forms. My application to be Property and Affairs deputy proceeded without a hitch but the forms for Personal Welfare deputy were returned with a request for additional information. I had failed to convince the Judge that Dylan required such a deputy.  On the one hand I was glad to not be turned down outright. On the other hand,  I was downhearted. What else could I say? The Judge had given me a specific deadline of 4pm on a particular day to return the papers. Determined to get it right, I worked on my revised statement up to the 11th hour.  In a farcical final act, when I needed to take the forms to the Post Office I found I couldn’t open the door of my house. It had rained heavily and (I discovered later) my wooden front door had swollen in its frame. When I finally managed to tug it open, it wouldn’t close behind me. I couldn’t leave a house door open in a city street so I heaved my shoulder against the door to force it closed, splintering the frame. Never mind that. I had to get to the Post Office.

Lockdown and Identity

When I received the Court Orders to say I had been appointed Dylan’s Property and Affairs and Personal Welfare deputy I could have cried.  Blessings on the Judge, I chanted. It felt like a weight had been lifted from my shoulders.  Almost immediately, however, I found myself carrying the weight of being Dylan’s deputy in the time of  Coronavirus.

There have been a number of decisions that have needed to be made on Dylan’s behalf and I have tried to work through the balance of risk for each one and make decisions in his best interests. Fortunately, I have been helped in this by fantastic support from everyone involved in Dylan’s care. I’m pleased to say that my earlier negative experience of a panel review has not been repeated. Representatives of Dylan’s funding body have been particularly understanding during lockdown and have certainly exemplified the three key factors in partnership mentioned earlier; decisions about Dylan’s care have genuinely felt like an exchange of expertise and a participatory dialogue. Perhaps this would have been the case with or without the deputyship, but I’ve been glad to have it.

I have found myself wondering whether I would have come to different decisions about Dylan’s care as his mother, rather than his deputy.  Maybe. I would say that I have thought more about Dylan’s needs and less about my own, since I was appointed. Certainly,  our relationship has felt different, recently.  I’m not sure that’s because I have a new role in Dylan’s life, however; I suspect the change is due to the Covid-19 pandemic.

In lockdown, we have had time to reflect on the things we appreciate about our lives as well as the things we have lost. When I had to reschedule a holiday that I had planned for Dylan at Easter I realised that I would also miss the steam train, the sea, the walks and the picnics. ‘Will we ever enjoy those together again, Dylan and I?’ I wrote in my diary. The entry goes on to reflect on the nature of my relationship with Dylan and my role in his life:

What I realised this morning is how much I love my life. That although it’s possible to  think of my responsibility to Dylan as that of ‘carer’,  in actual fact we thoroughly enjoy our weekends and holidays together. We go to lovely places and we have found a way of being together that is joyous and fulfilling. This goes beyond my duty or his need.

‘Identity’ is a slippery concept and we slip between the categories that describe our lives. During lockdown, rather than thinking of myself as Dylan’s mother, carer or deputy, I have considered myself his friend.

Reference

Unwin, G., LeMesurier, N, Bathia, N & Shoumitro, D. (2008). Transition for adolescents and young adults with learning disabilities and mental health problems/challenging behaviours:  the parent carers’ views. Advances in Mental Health and Learning Disabilities. 2:1, 22-28

The photos were taken earlier this month during a short break on the Yorkshire coast.

Family Lockdown: Dylan breaks the rules

In my last post I reflected on the challenge of caring for a vulnerable adult who lacks the capacity to understand  lockdown.  Dylan’s intellectual disability and autism mean that even in ‘normal’ times he engages in what could be considered socially inappropriate behaviour; in the context of a public health crisis, a lack of regard for social norms such as distancing can result in challenging rule breaks. In this post, I celebrate the fact that Dylan breaks the rules and rejoice in the unexpected places this can lead…

22nd March, 2020 (Mothering Sunday, UK, Ireland)

To tell this story I have to go back to Mother’s Day which this year fell on the Sunday after the start of lockdown. Dylan and I had been celebrating his 26th birthday in Durham the previous weekend but returned to the news that we were to stay at home other than to take exercise, shop for food, travel for essential work or provide care to vulnerable people. The trips and activities which had been scheduled for the week, and which Dylan was expecting to happen, could not go ahead.

While staff at Dylan’s home threw themselves into designing lockdown activities for the residents, I tried to think of alternative activities for the up-coming weekend. As I would be providing care to a vulnerable person I could still see Dylan, but our planned outing to Renishaw Hall was out of the question. This is an annual routine which helps me with Mothering Sunday, a day I have found difficult since my mother died in May 2006.  I enjoy receiving cards and gifts from my children but it doesn’t lessen the pain of not being able to see my own mother. In some ways it makes her absence more acute, now I am un-mothered.

Reservoir

Government guidelines allowed me to take Dylan for exercise somewhere local. I decided the best replacement for our cancelled trip was a reservoir walk, something Dylan enjoys and for which there are multiple options .  As I considered their relative merits, however, I realised that Dylan tends to associate reservoirs with pubs.  Agden and the Old Horns. Langsett and The Waggon & Horses. Underbank and the Mustard Pot. Redmires and The Three Merry Lads. Dale Dike and The Strines Inn. This could be problematic.

I set off driving along the road between Dylan’s residential setting and my home, along which the reservoirs are scattered. ‘Renishaw is closed today, Dylan’ I told him. ‘Let’s walk around a reservoir instead.’  I was still wondering which one when, at a bend in the road, I remembered Broomhead.  It isn’t a reservoir we visit, really.  We walked around it three summers ago for the first time in years. There are no routines associated with it and there is no pub nearby.  It also tends to be quieter than other reservoirs. Perfect for lockdown then.

I eyed Dylan through the rear-view mirror as I parked up. He was thinking about something I could tell, his face a blend of surprise and alert. Dylan and I set off walking anti-clockwise along the reservoir’s south bank. When we reached the cross-wall at the  reservoir end, where I expected Dylan to turn left and head back by the north bank, he chose to walk on. Here, Broomhead Reservoir trickles into Morehall Reservoir like a tear. As we more often walk around Morehall,  I assumed Dylan was hankering after a familiar landscape. There was probably enough time for us to walk around both reservoirs.  ‘Alright Dylan’, I said.

But to my surprise Dylan made a wedge-shaped turn and doubled back on himself to the road which runs between the reservoirs, separating their two tears. He must be crossing to the opposite bank to walk our usual clockwise direction around Morehall, I thought to myself. I quite liked the idea of walking a figure of 8. But rather than make a right turn when we got to the other bank, Dylan turned left.  So, he did want to walk around Broomhead?  I looked at Dylan. He had a glint in his eye. There was, I suddenly realised, something looming up ahead.

Matriarch

As Dylan strode purposefully up the road I thought of her. How could I not? This is where my sister used to live,  in a waterside house, off to the right, tucked in under ancient trees. Perhaps she still did?  I hadn’t had any contact with my sister since our mother died . Across those 14 years, the weight of silence had become too heavy to carry and too much to break.

Why? I don’t remember. The wrong word at the wrong time. A mistaken look. A misjudged silence.  ‘Something and nothing’, as my mother used to say to us when we squabbled as children.  The only thing I’m sure of, looking back, is that grief undoes people. It pulls the ground from under them. And it takes people in different ways at different rates. And in those desperate days we can say and do unthinking things.  It is a painful unravelling. A wild reeling. A terrible scrabbling while the earth tilts.

After, as the estranged days became weeks then months then years, I wished there was someone to help fix things. Someone who would have understood it was because we were hurting. Someone who could have supported us through our stubborn silence. Someone who would have helped us to heal. What do you do when that person has gone? I didn’t realise, while she was alive, how responsible she was for holding the family together.

Dylan Remembering

When Dylan and I walked this way, three summers before, I had been aware of his gaze on the house beneath the ancient trees. Perhaps he gestured at it in the questioning way he has. I don’t know because I had turned my face to the ground, tightened my hold on Dylan’s arm, hurried him along. I remember feeling overwhelmed and anxious. What if she saw us?

Today, Dylan is ahead of me, gathering pace. As we draw level with the house in the woods I call his name softly, hold out my arm. Dylan ignores me and I call him again, more urgently: ‘Dylan! Dylan!’.  But there is no stopping him this time. He is heading towards the house that he remembers. He is striding up the path at the side of the house, following the route he has always known. I call him more sharply: ‘Dylan!  Come back Dylan!’  But he has crossed the back yard and is heading for the door.

What is he remembering? Family gatherings on Boxing Day. Cakes and biscuits and orange juice.  An exercise bike in an upstairs room. A fire. Men with beards. His Gran. Watching films in a room with a big glass window. Escaping unnoticed upstairs while the big people talk and laugh.  Riding pillion with me on his uncle’s motorbike along the private track (probably especially that). Who knows what Dylan remembers of those days.

I pick up pace. I must hoick Dylan back to the reservoir path. I need to restore the day to normal. I want to shout but don’t want to attract attention.  ‘No, Dylan, no!’ I hiss at him.  But it is too late. He is opening the door.  Walking in.  Not even knocking!  Now he is in the house.  I am outside, utterly at sea.  Surely, it will swallow me?  I poke my head around the door pleading: ‘Dylan come back.’  But he is on his knees in a corner, browsing DVDs. ‘I’m so sorry’ I say, as my sister and her husband appear. ‘I’m so sorry’. She takes me by my hands, looks into my eyes. ‘It’s alright’, she says. ‘It’s alright. Don’t worry.’

 Healing Dylan

After 14 years it took Dylan to bring this reconciliation about. Only Dylan could have done this. It needed someone driven by feelings and desires – uninhibited by real or imagined hurts and slights, ungoverned by social rules or convention. After all these years of wondering whether a family wound could ever be healed and worrying that none of us would fix things, it was Dylan who made it better.

Bless Dylan. How I love that, in the end, it was this young man – whose autism and intellectual disability famously confer deficits of imagination, social understanding, empathy, cognitive capacity and communication – who brought this about. Blessings on my passionate, strong-willed, opportunistic son.

 

Breaking the Rules

As the first weekend we would be in lockdown happened to coincide with Mother’s Day, Government briefings had particularly noted that the rules meant no contact with families. After 14 years of having had no contact, Dylan and I stayed a couple of hours with my sister and her husband. We spent the time chatting and drinking tea. Dylan gazed at an architectural drawing of the Natural History Museum and lobbied for chocolate biscuits. By the time we left he had explored every room in the house and helped himself to four DVDs. On our way out of the door, unprompted, Dylan extended his arm to his aunt and uncle in turn, shook them by the hand. ‘We’ve broken every rule in the book today’, I observed.

As Dylan and I made our way back to the car I was conscious of a slackening inside, a different relaxed. The light was warm and honey-coloured.  We stopped once or twice and took photographs. Later, when I looked at the pictures on my phone, I was struck by the relief in my face.  I texted my sister. ‘I am smiling at the news on the radio not to see family today.’ ‘I think we can just about make an exception in this case’ she replied.  We marvelled at the circumstances that had reunited us and at the serendipity of it being Mother’s Day. ‘Mum will be smiling on us’, my sister reflected.

 

 

Since Mother’s Day, my sister and I have observed lockdown. We hope to meet again soon!

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

An NHS guide for patient management during the coronavirus pandemic notes that ‘People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely’ (see link below).  In 2018-19, apparently, at least 41% of deaths of people with a learning disability were from respiratory conditions. Among those with a learning disability there is a higher prevalence of asthma, diabetes and weight conditions (obese or underweight) which make this group ‘more vulnerable to coronavirus’. The guide notes there is therefore ‘strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic’.  It also cites evidence that people with autism have higher rates of health problems which ‘may result in elevated risk of early mortality’. Although Dylan doesn’t have the underlying conditions which increase vulnerability to coronavirus, his autism and learning disability mean it’s impossible not to worry.

Coronavirus and Capacity

Dylan’s combination of autism and intellectual disability (which I’ll refer to as AutID from this point) means he requires 1:1 support  in a residential setting.  This puts him at increased risk of infection because he has contact with a large number of support workers (and, by association, their families) which increases his potential exposure to the virus. As we have seen in relation to the elder population, the social ‘bubble’ of a locked-down care home is large and intimate enough for the virus to spread quickly once it has been introduced.

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

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

How do you protect someone with AutID?

It’s all very well having an adequate supply of PPE but adults with AutID may not accept these.  This will vary for individuals but Dylan will not tolerate wearing a mask or other people using them. The NHS guidance referred to earlier acknowledges this and advises clinicians that ‘masks and protective clothing may frighten [people with AutID], make them more anxious and lead to adverse behaviours, such as hurting other people, hurting themselves and destroying property.’ This is a pretty accurate description of Dylan’s likely response to an insistence on wearing face masks and it’s good to see such information being issued to front line staff. While I don’t think Dylan will ever accept a covering over his own mouth and nose, I’ve found he will accept me wearing a scarf over mine.  This is a simple adjustment, enabling me to do what I can to protect Dylan.

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

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

As the NHS guidance notes, some people with learning disability may be unable to explain how they feel or ‘not be able to articulate their response to pain in the expected way’. Dylan’s communication is limited but he does say ‘oo’ or ‘poor Dylan’ if he is in pain or feels unwell. Sometimes the words he chooses can mislead, however;  Dylan uses ‘sick’ to communicate that he is hungry for example. It took me a while to figure this one out but it makes perfect sense –  a not very nice feeling in his tummy – and reminds me that Dylan is creative about communication and will substitute a word he knows for one he doesn’t.  The NHS guidance includes links to useful resources such as the Non-Communicating Adult Pain Checklist and Wong-Baker FACES Pain Rating Scale, which I’ve been using with Dylan at weekends to encourage him to show me how he feels.

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

How do you treat someone with AutID?

The NHS guidance is aimed at front line staff treating people with AutID for coronavirus infection in a hospital setting. While it is reassuring that specialised guidance has been provided about the needs of this very vulnerable group of people, the prospect of Dylan requiring hospital treatment for Covid-19 fills me with dread.

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

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

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

 Dylan’s Rainbow

For Dylan, support is everything at this time.  His contact with me continues as normal, thanks to the guidelines which allow people to provide care for the vulnerable. Dylan’s relationship with support workers is also continuing as usual, due to good management and health practices in the home. Perhaps Dylan notices subtle differences in the way we interact with him. He has a range of games and rituals which involve physical contact, for example.  I’ve noticed some members of staff  pull back or move Dylan on (understandably) and sometimes I think I see a puzzled look in Dylan’s eyes.

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

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

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

Where does it End?

It’s a nice idea isn’t it? I would like to believe this might be how the story ends. While I don’t doubt there is strong public support for the health and care sectors,  it would be easy to doubt the political will. In particular, some of the provisions of the Coronavirus Bill, which slipped quickly through Parliament at the start of the pandemic with minimum discussion or scrutiny –  and which passed into law as the Coronavirus Act on 25th March 2020 –  are a cause for concern.

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

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

 

Key Document:

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

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