Being Harry: Autism and Virtual Reality

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

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

Team Changes

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

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

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

Harry’s World

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

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

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

 

Virtual Reality

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

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

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

Fantasy Football

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

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

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

 

 

Note:

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

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

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

 

Mothers

In the news recently, a claim that ‘missing microbes cause childhood cancer’. New research, apparently, suggests that a child’s immune system can become cancerous if it is not exposed to enough bugs early in life:

https://www.bbc.co.uk/news/health-44199844

Although we are reassured that ‘This study is absolutely not about blaming parents for being too hygienic’,  imagine the impact if you are the mother of a child with cancer? As well as dealing with the distress of witnessing your child’s illness, you are offered the possibility that your own care-giving practice might have been responsible. ‘Another way to knock mothers’  I thought to myself when I read the report. I’ve about had my bellyful recently…

Mother blame

Last semester I was asked to take a seminar group for a module which focuses on psychological perspectives on educational processes. I don’t usually teach on the module and I found the opportunity interesting and often valuable. One thing I was struck by, however, was how often mothers are blamed for poor educational outcomes.

I was already aware of the link between early literacy and maternal education, a relationship which tends to act as an indicator of socio-economic class.  Last semester, however, I encountered research which linked  child outcomes to psychological factors such as maternal self-efficacy, maternal self-esteem and maternal resilience. While these may also be associated with social class, I found it interesting that there was no mention of paternal well-being; rather than associate poor outcomes with the broader context of home, they were laid firmly at the feet of the mother.

As well as linking mothers to outcomes in relation to child development and achievement, research studies have suggested a relationship between mothering and a child’s experience of school. Studies of bullying, for example, have suggested that ‘maternal hostility’, ‘maternal mental health’, ‘maternal demand’ and early motherhood all positively correlate with a child ‘having a participant role in bullying behaviour’.

A framework of ‘cumulative risk’ identifies ten key factors which affect educational outcomes, four of which focus explicitly on mothers: mother-child interaction during infancy; maternal mental illness; maternal education; and maternal anxiety (the other factors involve  structural risks, such as family size and minority ethnic group, and circumstance, such as life events and family support). Mothers have also been blamed for not doing enough to assuage educational disadvantage;  not only do they comprise 40% of the cumulative risk to children, mothers are the key  to protection as ‘maternal resilience’ is identified as most likely to offset risk.

Had I been resilient when my children were young, I asked myself?  Was I emotionally available through those difficult post-diagnosis years?  Did I control my anxiety about the future? Make appropriate demands on my children?  Had I kept my spirits up and sense of identity intact? I couldn’t, in all honesty, answer Yes to any of these questions…

Bettelheim and beyond

Most mothers with a child who has been diagnosed autistic hear about Bruno Bettelheim’s ‘refrigerator mothers’ at some point. Even though we are assured his work is now discredited, for the mother of a newly-diagnosed child it is very difficult to encounter Bettelheim’s claims. I certainly experienced them as cruel following Dylan’s diagnosis: I was doing everything I could to support my child, yet here I was being framed as the problem.

You’d think this was a thing of the past. In recent years, however, a new form of mother blame is gaining currency. Mothers (for it is typically mothers, not fathers) are framed as ‘infantilising’ their autistic children by over-protecting them and failing to recognise them as autonomous individuals. This is a discourse which has emerged in tandem with a commitment to developing independence, an agenda freighted by the voices of self-advocating autistic adults.

Two assumptions seem to be at work here. The first is that a non-autistic mother of an autistic child will necessarily privilege the neurotypical and try to ‘fix her child up’ and/or be over-protective and infantilise her child.  Allied to this is the suggestion that mothers who are not diagnosed as autistic themselves have no right to speak for their autistic children due to their lack of understanding of autism.  A recent blog by Paula Sanchez refers to the “warring factions of ‘autism moms’ and autistic activists”. In the article, Sanchez caricatures a neurotypical  ‘autism mom’ and an ‘autistic mother’:

https://autisticmotherland.com/2018/04/20/from-autism-mom-to-autistic-mother/

Sanchez  urges  ‘autism moms’ to ‘prioritise your child’s autonomy over and above everything else’  and to encourage their autistic identity as part of the process of self-advocacy.  While of the view that non-autistics can probably never understand being autistic, however, Sanchez acknowledges: “it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.”

Who speaks?

As the mother of a non-verbal autistic man I find it useful and often illuminating to hear the testimony of autistic adults who self-advocate.  Their voices give me new ways of thinking about Dylan and how he might experience the world. The demand by autistic self-advocates for ‘nothing about us that isn’t by us’, however, challenges parents (such as myself) who advocate for and on behalf of a son or daughter.

Once again I find myself struck by the complexity of the intersection of intellectual disability with autism. As someone who lacks mental capacity, my son is not able to take part in the conversation; not only does he not have a ‘voice’, he is unable to make informed decisions about his life.  As I have argued elsewhere, concepts such as ‘independence’ and ‘autonomy’  take on a different shape when viewed through the lens of intellectual disability.

So who should identify Dylan’s best interests? Who speaks for Dylan and other autistic adults with intellectual disability? Sanchez acknowledges, in the post referred to above, that: “My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children.” The fact I don’t have an autism diagnosis might prevent me from understanding some aspects of Dylan’s experience,  but the deep and enduring relationship I have with him as a mother must surely have heft? And, as I have argued elsewhere, the alternative to advocacy for those with intellectual disability is not self-advocacy, it is silence.

Liminal mothers

Some academics (mothers of disabled children themselves) have questioned the assumptions which have been made about the role of parents in a disabled child’s life. Ferguson (2001) argues that parents carry their child’s impairment as part of their own lived experience and are therefore well placed to advocate for their disabled children and bring about positive change in their lives. Similarly Kelly (2005) observes that parents ‘act as experiencers, interpreters and agents’ through their intimate connection to the experience of their disabled child. Parents’ embodied experience of care-giving is not ‘second-hand knowledge’ of disability, Kelly argues, but rather a ‘partial knowledge’  which allows parents to share some of their child’s experience and meaning-making.

Ryan and Runswick-Cole (2008) have described the position of mothers of disabled children as ‘liminal’, rather than partial. They argue that mothers who are not themselves disabled must operate in a landscape of ‘oppressive mothering ideologies and disabling environments’.  Because of their distance from mothers of non-disabled children, as well as their tenuous position within the disabled community, non-disabled mothers of disabled children occupy a liminal space. Ryan and Runswick-Cole refer to the resulting ‘difficult and contentious debates about the role of non-disabled people within the lives of disabled people’ and the way in which ‘the actions of mothers have been interpreted as constraints within their children’s lives’.

It is interesting that the two concerns highlighted by Ryan and Runswick-Cole  – advocacy and autonomy – are the same as the issues identified in this post, written ten years later. It seems the current wave of mother blame may have been a long time gathering. In their 2008 paper Ryan and Runswick-Cole suggest that one of the reasons mothers might seek diagnostic labels for their children is in order to shift the discourse from ‘mother-blame’ to ‘brain-blame’.  While this may have been the case ten years ago, particularly in relation to autistic spectrum conditions, there has been a significant shift in the discourse to a celebration of neurodiversity and the claiming of autistic neurology as a vital part of self-identity. Against this backdrop, perhaps, there is a tendency to reposition blame (for a perceived lack of independence and the appropriation of voice) with the mother.

Liminal sons and daughters

Although I am uncomfortable with the way in which it is the mother, rather than father, who is subject to surveillance and criticism in relation to the ability to parent a disabled child, I am not averse to critical feedback and scrutiny. I often wish it were kinder, more supportive and more sympathetic. I would also prefer those without experience of parenting (even if they are themselves autistic) to acknowledge their own partial knowledge. Sanchez, in the post referred to above, makes some helpful observations and suggestions for building bridges between the ‘warring factions’ of autism parents and autistic adults.

What is still absent from these conversations, however, is any acknowledgement of autistic adults with intellectual disability. If the position of mothers of disabled children is liminal, then the space occupied by adults with intellectual disability is a similar limbo. As I argue above, the position of autistic adults who lack mental capacity is often unrepresented and overlooked. In challenging the ability of parents to advocate for their disabled sons and daughters, I would argue, we are putting the welfare of adults with intellectual disability at risk.

There is a legal system in the UK for the protection of the financial and welfare interests of those who lack capacity. It is a little-used system and one which is not easily accessed or much discussed.  In the last year, increasingly frustrated by the position of parents in relation to an adult child with an intellectual disability, it has become clear that it is a system I need to engage with.  So, once I’ve finished work and the football is over, my plan is to start the process of applying to the Court of Protection to be Dylan’s Deputy.  More about this in a future post…

Note:

The claims in the section of the post entitled ‘Mother Blame’ are from chapters 8, 9 and 11 of Woolfson (reference below). The images are sourced from the internet and to the best of my knowledge are copyright free. I’ve been unable to identify an artist for the image of the ‘floating woman’ but it was used as part of a lecture series on liminal space by Dr KD Farris. The image of the floating man is ‘Liminal Space’ by Nicholas Scarpinato.

Sources:

Barrett, E. (2017). Tied to the Worldly Work of Writing:  parent as ethnographer. Journal of intellectual Disabilities.  https://doi.org/10.1177/1744629517741008

Ferguson, P.M. (2001). Mapping the Family: Disability studies and the exploration of parental response to disability. In G.L. Albrecht, K.D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 373-395). Thousand Oaks, CA: Sage.

Kelly, S.E. (2005). ‘A Different Light’:  Examining Impairment through Parent Narratives of Childhood Disability. Journal of Contemporary Ethnography, 34, (2) 180-205.

Ryan, S & Runswick-Cole, K (2008). Repositioning mothers:  mothers, disabled children and disability studies. Disability & Society, 23 (3) 199-210

Woolfson, L.M. (2011).  Educational Psychology:  The impact of psychological research on education. Harlow:  Pearson

 

Mother

Dylan missed being born on Mother’s Day, in 1994, by 21 minutes.  “Hurry up”, the midwife said to me towards the end of my 72 hour labour “or you won’t get a mother’s day baby.”  I wanted it to be over but I didn’t give a fig about Mother’s Day.  In more than 30 years,  I’d given my mother no more than a handful of cards to mark the day. I wasn’t the sort of person who cared about such things.

I care now I’m a mother myself of course. I love it when Dylan gives me a gift on Mother’s Day. This year, it was the most glorious bunch of roses: pink, lemon, cream, peach, apricot and white.  Yesterday (more than two weeks since Mother’s Day) I said to a member of staff at Dylan’s home: “the roses Dylan gave me have been amazing: I still have a few in a jug”.

As I threw the last stems out this morning I wished I’d given roses to my mum more often.

*

Dylan and I drove to Brighton on Mother’s Day to celebrate his 24th birthday.  We hadn’t been back since we left when Dylan was six months old but this year things fell auspiciously for a return visit to the town where he was born.

Firstly, Dylan has developed a passion for Premier Inns; an overnight stay in a different one, for his birthday, should go down a treat.  Secondly (by coincidence) it is the town where Dylan’s beloved ex-key worker now lives; if Dylan could meet up with E while we were there, that would be birthday happiness indeed.  And thirdly, my work commitments meant that (unusually) I could take a couple of days leave. For me it would be a welcome trip down memory lane; I wanted to find my old flat, by the sea, and piece together the life I’d lived.

This would be a joint and double celebration then: something for both of us.

*

What I hadn’t bargained for was my mother.  I didn’t connect her with the trip at all but as soon as we arrived I was ambushed by memories. Although she and I hadn’t been particularly close, mum stayed in Brighton with me after Dylan was born. This wasn’t planned; she had only meant to visit while her first grandchild made its arrival. But I didn’t have a clue how to look after the baby and when she realised this mum asked for leave from her job in a school so she could stay on for a couple of weeks.

Although mum and I hadn’t spent much time together previously we got along just fine. Full of tact and diplomacy, she was the ideal mother of the child’s mother. Her presence was empowering; she suggested ways of taking care of Dylan but always left it up to me to decide.  We had a lot of fun together taking the baby out for the first time and hanging out in my airy flat in the sky. I remember how she loved the sound of the gulls and the sea at the end of the avenue.

When the day came for her to leave I didn’t want her to go.

*

I had taken ‘Baby’s First Photo Album’ to Brighton hoping it might help me to explain to Dylan that we had once lived there.  I’m not sure Dylan understands that he is the baby in the photographs or, indeed, that he was once a baby himself. Babies hold a special terror for Dylan; he hates the sound of them crying and is made very anxious by their presence. So Dylan has not really been interested in looking at photo records of his early life.  Knowing Dylan’s interest in matching images, however, I thought he might pay attention if I could recreate the photographs while we were there.

So when we arrived at our Premier Inn, on Mother’s Day evening, I flicked through the album for a photo to take with us on a short walk along the seafront before dinner.  Surely I had a picture of the stretch between the town centre and Hove, where we had lived?  The ones I found were of Dylan’s first day at the beach; according to the inscription on the back he was one week old when mum and I took turns to push him along the front. “Look Dylan”, I said, “you and your Gran.”

This year, on Mother’s Day, I celebrated my mother and me, by the sea.

*

“I have become my mother” I said to my friend R over coffee next day.  I’d suggested meeting a poet friend and his partner for a walk while Dylan and I were in town. It was a cold, wet day and we’d retreated to a cafe for coffee and cake.  “I wear my hair longer than she kept hers but otherwise we look the same, right down to our coats of green”.  OK, mine is lime and hers was emerald. But even so…

Dylan was twitchy, asking when he would see E, so I kept him moving through the rainy day. But everywhere we went I found my mum; we rode the carousel and the ghost train on the pier and I remembered her with an ice cream, fending off a gull. In the Brighton Lanes I recalled her buying gifts to take back for a colleague and her Head. Even when Dylan and I went to ride the brand new i-360 (where mum could not possibly be) I heard her voice in my ear, telling me how much she loves this town, how comfortable she feels here.

And then, of course, she was waiting for us at my old flat.

*

“Smile, Dylan” I said.  “Let mummy take just one more”.  Dylan grimaced at me in the rain. I put my arms together and rocked them. “When you were a baby”,  I said, “this is where mummy and Dylan lived. Mummy and Dylan the baby lived here in this house”. I pointed up at my top floor flat. It looked shabbier than I remembered but just as lovely. “We were  very happy here”,  I told Dylan. “And your Gran stayed with us and helped mummy to look after you.”  Dylan tugged at me.  It was past lunch time…

The thing is (I thought to myself as we walked down the Western Road looking for somewhere Dylan- and vegan-friendly to eat) things were different then.  Were they? What was different? Actually, the place seemed remarkably unchanged.  I couldn’t find my beloved Sanctuary Cafe and the sea front had been tidied up a bit, but these were superficial changes. Other than the i-360, it was all pretty much as I remembered.  So what was the thing? I grew sad. The cafe I had decided would be OK had been awful. The rain was falling slantwise.  I was cold and exhausted.  I felt as old as my mother. “Mummy’s tired, Dylan”, I said. “Let’s go back to the hotel. You will see E later. I promise you.”

What was different, I realised, is that I didn’t know Dylan was autistic then.

*

Caring for Dylan is as natural, now, as breathing.  My mum taught me how to look after a new born baby and I learned, from Dylan, how to take care of my autistic son.  Our six months in Brighton, 24 years ago, seemed suddenly unreal; I had been in a bubble then, my eyes fixed on a thin blue line between sea and sky. Today, I couldn’t even see the horizon. I wanted to cry but I said “Dylan, let’s buy an umbrella then go and find E.”

By coincidence, it is E’s birthday as well as Dylan’s. In the pub where we have arranged to meet they exchange gifts. Dylan beams at the fiddle toys she gives him and gazes at her, unbelieving. Here is another thing for Dylan to process; just as he has a past, here, so E has a present. ‘Time’ is a difficult concept for Dylan and his birthday trip has been full of its knottiness. On the way back to our hotel afterwards, I find more knots: the number 7 bus passes the hospital where Dylan was born and where, four months later, he would spend a week on a drip, being treated for meningococcal  septicemia.

I push it out of my head:  some questions are too difficult to ask.

*

The next morning is the bluest of blues.  After breakfast we walk down to the beach.  The thin line at the edge of the world is so clear I imagine the ships could tumble off.  I watch Dylan throw stones into the sea. He concentrates hard on this for 40 minutes, testing the arc of his arm against the waves. I read some poems, try to make out the avenue where we lived, away in the distance. I think of mum and Dylan and feel part of a chain, a piece of their history.

“Let’s go back to the hotel and get our bags”, I say. “Then find a birthday cake to take home.”  There was almost a meltdown but I somehow managed to head off Dylan’s disappointment at not being able to strike out along the seafront, explore some more, and his intense frustration at the broken slush machine at the end of the pier.  As I steered Dylan away from potential triggers, and toward the sublime joy of a Rainbow Unicorn Cake, I realised Brighton was no longer my rinky-dink town;  the place belonged to Dylan too.

“But”, I said to Dylan as we left; “I am never staying in a Premier Inn again”.
*

It was a particularly grotty Premier Inn (though the staff were lovely).  I know Dylan adores this chain but I really think I have reached my limit. Suggestions for moving Dylan on to alternatives gratefully received 🙂

 

 

 

Residential Snow

When Dylan first moved to residential care one of the things that made me anxious was the idea of not being there for him if he became upset or was ill. The setting isn’t far from where I live, relatively speaking, but the quickest cross-country route from home takes 50 minutes; as it’s all but impossible by public transport I worry about being unable to drive.

As I’m not a particularly confident driver my anxieties about not being able to get to Dylan are compounded by bad weather.  I know emergencies are rare and that the chances of Dylan having an accident don’t increase when it is snowing  (well, perhaps a smidge).  I also accept that there is no need for me to drive to the home in response to minor incidents; familiar staff are there to support Dylan at such times. So it ought to be possible not to worry about the weather, even when conditions are arctic. This is not, however, necessarily the case.

Routine Emergency

One of the most important things to Dylan is his visual programme. He has various routines around this, one of which is that he likes his week  to end on the day he comes home.  Dylan really enjoys looking through his ‘new programme’ with me while he is visiting. For this to work, however, we need to agree Dylan’s weekly programme two or three days before he comes home for the weekend. What this means is that some of his activities are planned as much as ten days before they are to happen.  The weather  forecast is not something that can be reliably factored into planning.

At the height of last week’s snowfall, all planned activities at Dylan’s residential setting had to be cancelled as it was no longer safe to transport residents by car. This meant that a programme change had to be communicated –  not easy for Dylan, but he accepted it well and was happy to spend time in the snow instead.  The possibility that Dylan might not make it home at the weekend, however, worried me; this was not a disruption to routine that Dylan would so easily accept.

Essential Work

As well as feeling anxious about getting myself to Dylan’s home I worried about whether the care home staff could get to work. I know this is not my responsibility but because staffing is essential in a setting such as Dylan’s I still thought about it. The residents are bound to be unsettled by the change in routine and the inability to make trips out means they have to spend more time in the home together than usual. This is potentially a tricky situation and the best resource is plenty of staff.

I need not have worried of course; the managers had everything under control and the staff did what essential workers do and made it through the snow to the home.  When I asked how they had managed on the worst of the snow days, one member of staff told me that those who had got through ‘stayed on’, doing double shifts and sleeping over.  So while I spent most of the week working from home, work at Dylan’s home continued as normal.

No Snow Drama

This triggered two reflections. Firstly, that when we refer to ‘essential workers’ at times of extreme weather or public holiday we rarely think about the thousands of staff who work in residential settings supporting  the most vulnerable members of society.  Because the focus in such settings is about keeping residents calm and comfortable by maintaining routine and structure,  snow and ice doesn’t generate dramatic footage for the national news. Workers driving emergency response vehicles, Chinook helicopters and roadside recovery trucks may appear more heroic, but my heroes last week were the staff who took care of Dylan without turning the weather into a drama.

The second thing was a memory of when Dylan was living at home. The experience is still recent enough for me to remember how challenging it was to keep Dylan calm and happy during extreme weather. The disruption to Dylan’s routine if his school or day centre was closed, and the difficulty of being confined to a relatively small space,  without access to the therapeutic resources and spaces he needs, would often trigger anxiety and frustration. Recalling this, I was glad that Dylan was not only safe, but in the best possible place.

Weekend Work

There have been wintry weekends while Dylan has lived at his residential home but they have never prevented me from collecting Dylan for a home visit. With England in the grip of extreme weather, however, the situation was different. By the end of the week I had accepted that I could not get to Dylan and that he was safest staying where he was. The snow was so heavy that rather than fret about how Dylan would respond I settled into the idea;  there was nothing could be done and it would probably be good for me to have a break from caring for Dylan.

In the event, however, one of the support workers (a more confident driver than me) brought Dylan to me and collected him the next day. Although this was not quite the routine Dylan was used to it meant he had some time at home as well as relieving pressure on staff at the residential home. Dylan and I enjoyed our time together but I was a bit anxious about not being able to take him out for an activity as I usually do. This made me realise that Dylan and I have constructed a weekend routine which isn’t sustainable; there will be other times when the weather closes in and (in due course) age and ill-health to prevent me from looking after Dylan. I need to prepare us both for this somehow. I think an unsnowy break from our weekend routine may be on the horizon…

Dylan enjoying himself in the residential snow…

Finding Plato (or ‘getting back to work after having been a long-term carer’)

While organising child care is challenging for all working parents it can be particularly difficult for parents of disabled children as care needs often extend into adolescence and increase in complexity as the child gets older. This is frequently the case for autistic children with intellectual disability and for those children and adolescents whose behaviour may be considered challenging.

When Dylan was living at home I wrote several blog posts reflecting on the difficulties of managing the demands of a full-time job alongside my role as carer. While my employer was accommodating about certain aspects of my work, there were some employment practices about which nothing could be done; participation in evening research seminars, conferences away from home and professional development activities such as external examining were simply not possible.

As a single parent, I had to make sacrifices in the workplace in order to care for Dylan. I don’t regret these for a moment. I don’t recall ever having met a parent who has regretted the impact on their working life of caring for children. In fact I have probably read more accounts of parents who feel grateful that their caring responsibilities enabled them to re-think their relationship with the workplace and their career aspirations.

Obstacles

Academics often come into the sector on the back of their early experience of research, perhaps direct from their own PhD study or having worked on a research project. In this respect, I was a typical  early career academic when I took up my first appointment as a university lecturer in 1991. For the first six or seven years of my career I maintained a research-oriented focus to my work, contributing to articles and books while developing my experience of teaching and administration. From soon after 1996 however (the year Dylan was diagnosed autistic) my research articles started to decline and gaps began to emerge in my publications record.

Although there was still a trickle of papers through the 90s, these tended to be shorter and opportunistic. Then in 2004 (the year my ex-husband and I divorced) the publications come to an abrupt halt. From this point on the focus of my work would shift; I switched from research to undergraduate teaching (as this was easier to fit into the school day) and in order to manage financially I pursued promotions in leadership. While these roles took me further away from the research work I had wanted to do, it was a pragmatic strategy and I was glad I had the option.

One thing I have discovered about caring for someone with a disability is that fresh challenges emerge across the life course. Such spikes in the rhythm of family life can make the demands of the workplace feel overwhelming from time to time. When Dylan transitioned from school to adult services the lack of appropriate provision for his complex needs meant we hit crisis. The pressures were so great that, despite having managed as a lone working parent of a disabled child for years, it no longer felt possible. My responsibilities at home were overwhelming and had to take priority. I decided that I needed to reduce my working commitments. I had already given up research; now I gave up my leadership role as well.

Finding Plato

While there were downsides to this decision (the reduction in salary, for example) I was surprised to find that within a short period of time I was enjoying my work more than I had for years. As I no longer received remission from teaching for leadership responsibilities, and couldn’t claim any for research,  I had the heaviest teaching load of my career. I was physically exhausted but I found the teaching energising; suddenly I had the mental energy needed to advocate for Dylan and  renewed confidence in my ability to support him.

In the event, Dylan wasn’t offered an appropriate placement for another two years. The fact I was enjoying my teaching, however, meant that rather than feeling like a drain on my resources, work helped me to cope. Returning to teaching had allowed me to reconnect with my reasons for wanting to work in higher education and therefore with my sense of self.  In order to act as an effective advocate, it seems to me, such self-care and attention to our own needs and identity is essential. Setting up this blog became part of that process of re-connection and renewal.

Sometime in 2016, after Dylan had been allocated a residential placement, I was reading The Republic for a philosophy of education module I was teaching. I was struck by Plato’s suggestion that Guardians (the educated class of Athens) should give themselves to public service during the ages of 35-50 but then withdraw from  leadership in order to resume a focus on scholarship and private study. In the aftermath of Dylan leaving home I had been struggling to find a sense of purpose and to accept my new identity as an ex-carer.  The idea appealed; here was a self-justifying framework I could live with.

Opportunities

The problem was, it had been such a long time since I’d done any research I wasn’t sure how to go about it.  I hadn’t kept up with developments in fields I had previously researched and, in any case, had lost interest in them.  I no longer had a track record so there was no chance of being awarded funding to set up a research project in something new.  By now close to retirement, I was ineligible for the development initiatives which offered support to new researchers. Just how was I supposed to jump start my stalled academic career? Is this what happens to those with long-term caring responsibilities, I wondered? That by the time we are ready to resume a career it is too late?

I like to think that over the years I have turned my experience of supporting my severely disabled son from what could have felt like an obstacle into an opportunity. In relation to career, however, this had been a struggle. I was glad to feel re-engaged with teaching and not sorry to have given up my leadership responsibilities. I had worked hard to re-position myself in the workplace and not to care that the research route appeared to be blocked. Finding Plato, however, had stirred something in me.

I wish there was still some research I could do, I said to a colleague one day.  I explained how impossible it felt to return to research, more than a decade after I’d stepped back to focus on other things.

But you’ve so much to write about, she replied.  You have enough material in your blog for several papers.

Tied to the Worldly Work of Writing

My colleague knew what she was talking about as she had recently published an article drawing partly on a blog in which she documented her experience of caring for her elderly father. I had supported my colleague to set up her blog, based on my experience of keeping Living with Autism; now my colleague supported me to think about my blog as a resource for scholarship and enquiry. As well as listening while I tried out ideas, she suggested readings and scheduled writing days during which we worked alongside each other developing plans. The process was time-consuming; we spent over a year discussing ideas for a paper. The final outcome of this process was not what I’d anticipated; instead of a joint paper based on both blogs, the article which emerged focuses on parents of children with intellectual disability:

The premise of the paper is that parents and carers of autistic children acquire skills similar to those used in ‘ethnographic research’, a method based on participant observation in which a researcher immerses herself in the life world of another.  Parents of disabled children, I argue, need to adopt such an approach to parenting if they are to understand the world through their child’s eyes. This is particularly important, I suggest, when supporting a non-verbal child or adult with intellectual disability.  Based on this, I claim ‘ethnographic parenting’ of disabled children as a useful epistemology or ‘way of knowing’. Online blogs kept by parents of autistic children, I argue, represent valuable ‘single stories’ which enable us to build our understanding of children and adults whose voice would not otherwise be heard.

Writing the paper turned out to be an immensely satisfying process, enabling me to draw together the threads of years of parenting and academic work. As well as encouraging me to think deeply and carefully about the role of parents in advocating for children and adults with intellectual disability, writing the paper allowed me to acknowledge the intersectionality of my own working and family life. I know that I would not have embarked on this project without the encouragement of my colleague and I cannot stress the importance of her support enough. The experience leads me to suggest that we should do more to enable long term carers to resume their work and careers.

The Physical And The Emotional

wp_20170101_008I’d been reflecting that I was finding it hard to move on; 18 months since Dylan had moved to residential care and I’d managed hardly any of the things I’d told myself I was looking forward to.  I wasn’t sure what I’d done with the extra time; in fact I’d written fewer poems, been to the cinema less often and swum hardly at all.

I seem to have spent a lot of time thinking about Dylan, I said to a friend. That’s understandable, she replied. You haven’t stopped caring full-time for Dylan emotionally just because you’re not taking care of him physically.

*

wp_20170101_009So I’ve been thinking about the relationship between the physical and emotional labour of caring for Dylan. One of the things I was concerned about when Dylan moved to residential care was that I’d forget how to look after him.  I worried that I’d lose the rhythm of bathing and shaving him if I wasn’t doing it every day. I feared the habit of being alert might leave me; that I wouldn’t hear the change in his footsteps or sudden silence summoning me to check that all was well. I was relieved I no longer had to do all the caring single-handed but I envied those who had taken my place; the fruits of this labour would now be theirs.

And the rewards of physical caring, I came to realise, are rich indeed. In this blog post, written 29 days after Dylan moved to his residential setting, I reflected on the possibility that chores are a currency of care. If you have a disability that means  you can’t take care of your own needs, perhaps care-giving acts, such as laundering clothes, acquire emotional freight? In the aftermath of Dylan leaving home, I realised that the physicality of caring for him had been a language of love.

I have learned that we don’t forget how to care for someone physically if we no longer do it every day; the rhythm is as deep in my body’s memory as climbing the stairs or swimming a length of the pool. The challenge is not remembering how to care for a person we love but finding a way of sharing responsibility for this. Perhaps, as a long-term single parent, I am less used to this than others. I have asked myself whether I would find it easier to share Dylan’s care with others if I had had to negotiate this with another parent while Dylan was at home. As I’m sure I’ve reflected before, there is something limiting as well as liberating about having sole care.

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wp_20170101_010And although Dylan is 22 years old he does still need physical care; he has to be supported to wash, dress, eat and to access the activities which he enjoys.  Since Dylan moved to residential care his ‘care plan’ has developed to reflect minor changes in his support needs;  Dylan needs more help selecting appropriate clothes than staff realised, for example, but minimal supervision when organising his daypack.

Sometimes Dylan shows a new streak of independence. When I arrived to collect him from his residential setting at New Year he took off at high speed. Where is he going? I asked staff. They weren’t sure. A support worker followed him and returned with a smiling Dylan: He’d gone back to his bedroom, she explained, to fetch his water bottle.

I was absolutely delighted.  The water bottle was new –  a present from Santa – and I wasn’t sure whether or not it was something Dylan would use.  It turned out that in the week since Christmas Dylan had got into the habit of filling it up each day and taking it with him on daytime activities. I could tell the present was a success – the fact that Dylan had remembered it, when we had not, indicated this. As we drove to the seaside to celebrate the new year I reflected that this may well have been Dylan’s most successful Christmas present this year.

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wp_20170101_011I used to love listening to Alistair Cooke’s Letter from America on Radio 4. In one programme he introduced me to the term ‘not on my watch’, a plea which Cooke suggested American presidents made in relation to errors happening during their term of office. I have taken this phrase and applied it to my various responsibilities over the years, albeit for less-significant events. ‘If the course fails to recruit, let it not be on my watch’. ‘If the External Examiner isn’t happy, let it not be on my watch’. ‘If the children don’t have their lunch boxes, let it not be on my watch’…

The problem is, if you’re a single parent it usually is your watch. Sharing Dylan’s care gives the term more currency. I was thinking about this at new year because a breakdown in communication had meant Dylan didn’t have appropriate clothes for our planned trip. When I returned Dylan to his residential setting after the holiday I discovered this was because he is running low on trousers and needs to buy some more. I was feeling a bit grumbly about this as I settled Dylan back into his room after our trip to the seaside.  I’ll do an online order when I get home, I said, hopefully they’ll come fairly quickly.

I didn’t like that we hadn’t noticed Dylan needed to replace clothes. We need a better system for keeping track of Dylan’s things, I said.  And as I said that, something different but related came into my head.  Dylan, I said, Where’s your water bottle? What happened to your water bottle?  He looked at me, inscrutable. I’m pretty sure he knew what I was asking and what the implications were.  I thought he looked a little sad, but perhaps I imagined this. I checked Dylan’s bag and the car but there was no sign of it.  Staff must have worked hard to help Dylan build the water bottle into his routine and to look after it while he was out and about, I thought to myself. I’d been looking after Dylan for less than 24 hours and had managed to lose it. I’m so sorry, I said to the support worker. I’m afraid that was on my watch.

Later, when I looked at the photos from our trip, I could see the water bottle in the pocket of Dylan’s backpack while we were kite flying on the beach. Perhaps it had fallen out then.  Still, I telephoned the restaurant where we had eaten dinner afterwards. They hadn’t got it. Those Jack Wills things are really popular with the young folk, the manager said. Someone probably picked it up.

*

wp_20170114_003Last month I noticed that Dylan’s railcard had expired so I took it home to renew. Last week I remembered that I hadn’t done it and went to get the expired card from the ‘to do’ tray in my study. No sign of it. That’s odd. I hunted around a bit. It hadn’t fallen on the floor. I hadn’t put it in a drawer. I couldn’t remember for certain when I’d last seen it.  So much for keeping better track of Dylan’s things, I thought to myself. Now what to do? I searched though old emails for a record but drew a blank. I would have to sort this out: I had promised Dylan a train journey in the new year.

Can I have your Filofax please, Dylan? I asked him this weekend.  Dylan loves his Filofax and carries it everywhere with him.  He isn’t so interested in the daily records that we fill in (though he realises that they are important to us I think) but he’s very attached to the passes, tickets and concessions cards which he keeps there. As he gave it to me the Filofax fell open at his travel cards and to my amazement there was his rail card, neatly filed in its place. Dylan must have seen the card in my study and taken it back – keeping track of his own things, taking responsibility. Rather than just remove it again, this time I took the time to explain why. Dylan probably keeps better tabs on things than we realise.

*

As I reflected at the start of this post, I might not look after Dylan full-time but I spend a lot of time thinking about him.  This week, I’ve mostly been feeling bad about that water bottle. This is a small thing, I know, but I’ve been surprised at how much a lost water bottle has taught me about sharing Dylan’s care. So while Dylan and I were shopping for clothes yesterday I encouraged him into the shop where I had bought the original. Dylan seemed delighted and quickly picked out an identical replacement.  Hopefully I’ll be a bit better at keeping an eye on it this time, at least until Dylan has built it so firmly into his routine that he looks out for it himself.

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The photographs of Dylan flying his kite were taken in Cleethorpes on New Year’s Day

The Key

berrien-2016-047This week is the start of the academic year in England; pretty soon I will be deep in teaching. Although September no longer marks a transition point for Dylan I don’t think I will ever lose the anxiety that the end of summer brings for parents of children with disabilities. Each year I would live on my nerves through the first weeks of term, hoping desperately that all would be well.

It is three years, now, since Dylan left school. That was the hardest end of summer ever; my nerves burned for months. Happily, Dylan is settled at last and can live his life without such difficult jags of time; there are no sudden changes to the year’s rhythm, or inexplicable annual endings, in his residential setting. There is a reassuring continuity to Dylan’s life.

berrien-2016-046That’s not to say there aren’t changes; periodically something disrupts a routine or we deliberately introduce a new pattern to Dylan’s week. The last time I posted an update here, for example, I was anticipating taking a holiday without Dylan. I fretted terribly about the proposed trip, concerned that Dylan would be upset by my absence, but he was absolutely fine.

The key to this, I’m sure, was the extended timetable the care home staff made for Dylan. Instead of a weekly programme Dylan had a schedule which ran for the time I was away, ending with the day he would see me again. Dylan also had a weekly ‘overview’ schedule so that he could count the sleeps until his next visit home.  It didn’t seem to matter to Dylan that the gap between my visits was longer as long as he knew he would see me again.

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13901449_293441187680481_5004186233514663936_nI’m really glad that I took that ‘next step‘ during the summer. I had a fantastic week in Brittany and relaxed into the different pace of time without Dylan. Some of the things that my girlfriend and I did Dylan would also have enjoyed, but I was able to linger over them in a way that hasn’t been possible in the past: a Chagall exhibition in Landerneau; a beach day at Poul-Rodou; a folk festival in Plomodiern; cycling on the Isle de Batz. I returned from holiday this year refreshed instead of exhausted.

I missed Dylan of course. I kept his timetable close by me and checked it each day to see what he was doing. Initially I talked about him a lot. In fact on the drive down to Portsmouth for the ferry I must have come close to driving my friend away with my talk of Dylan. That journey was terrible for me. I was in such a state of anxiety about leaving Dylan I had made myself ill: my stomach was in knots and I had a dreadful sense of foreboding. My friend let me talk or not as I needed. Having her to support and encourage me was probably key to my being able to take the step at all.

wp_20160821_006I’m not sure how patient she would have been with me had I continued to talk so much about Dylan during the week. At some point in the Channel , however, I felt the knots in my stomach loosen and my anxiety lift. The sun was shining. We were on deck. I could sit and read Zola and drink tea, as I had dreamed of doing. And so the week continued; while we were in France I made only one phone call to Dylan’s care home and sent just one email.

The email was to ask staff what size Dylan’s head was.  The last time he and I were in Brittany he bought a Breton cap which he has worn constantly since and I wanted to get a new one for him, as a gift. He looked a bit puzzled when I gave it to him on my arrival home, as he did about the Breton biscuits which had mysteriously appeared in the house.  I think he pieced things together when he saw my photos from the holiday, however. Usually Dylan looks through photos from our trips with great interest but I’d describe his interest in my pictures from Brittany as ‘passing’. So mummy had been away without him.  He ate the biscuits. He put on his cap…

*

berrien-2016-025Dylan’s care home manager told me she thought parents should take a holiday, even if it causes separation anxiety. I understand that now.  It is important for parents of disabled children and adults to have a complete break, not just from caring but from thinking about themselves as care-givers.  And, I remind myself, learning how to be apart from your adult child is part of learning how to be a parent. In this respect the experience of a parent of a disabled adult is not dissimilar to the experience of any parent;  I was also anxious about being far from my daughter when she lived in France.

There is  something about being away from a disabled child or adult which can provoke particular anxiety, however.  Their vulnerability and dependence on others means you need to have complete confidence in the people caring for your son or daughter.  I feel lucky that Dylan is finally living somewhere I can put my trust in others.  This week I’ve been thinking a lot about how we make such decisions.  How do we figure out levels of confidence in someone? Is there a science to it? Do ticks on a checklist really reassure us?  Parents of children with disabilities spend their lives making difficult decisions about care provision,  but how we make them – well, that’s something I’m not absolutely certain of.

As well as the checklist there is surely something magical to this? Call it intuition, if you will. Something in your guts, perhaps. An unknotting.  Sense of lightness. Je ne sais quoi.  I’ve written about this before; how some of the critical decisions I’ve made about Dylan’s care have been based on something entirely irrational magical. And this week it struck me that I’ve been relying on such seventh sense since Dylan was born. Because, as a single working parent, I had to go back to work when Dylan was only a few weeks old so needed to find someone to look after him. I was pretty clueless about the berrien-2016-088 process; I didn’t know how to care for babies and certainly had no system for figuring out how to choose a childminder. But someone very special came into our lives and I was able to get back to work – which some days meant working a distance from Dylan – with the complete confidence which comes from knowing you trust someone else to care for your child.

Blogs can be wonderful can’t they? I was so thrilled to find a message on mine last week from Dylan’s first childminder 🙂 I moved away from the area quite soon after Dylan was born but Tan has remained a precious memory. She was a key person, perhaps, because she made my first difficult separation from Dylan not just possible but positive. I think that is probably also an accurate description of my experience this summer.

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berrien-2016-153The thing about key people is that they tend to be transitory:  children outgrow childminders;  parents move away; friends move on.  I can add something else now:  care workers get promoted.  Dylan’s key worker will be moving onto a new role next month so one of the things we will be discussing at his annual review this week is her replacement. E has been a fantastic key worker; she has developed a great relationship  with Dylan and has been instrumental in developing critical aspects of his care, particularly around communication and behaviour support. Although I was sad to hear Dylan would be losing her as his key worker, I can’t say I was surprised. Key people are special people and if they are young,  gifted and ambitious they inevitably get promoted 🙂   The only question in my mind had been when and to where she would move.

Happily, the promotion is within the organisation so Dylan will still have occasional contact with E. I am telling myself that Dylan was lucky to have her as his key worker during his first year in a residential home; E has helped him to settle in and created a system of care around Dylan which should ensure continuity. As the message from Dylan’s first childminder reminds me, we keep people in our hearts and minds long after they have moved on: I’m sure Dylan will not forget.

One of the many things I love about Dylan is his capacity to form deep  relationships.  He has his own magical system for deciding whether to trust someone; I’ve seen Dylan reject some people entirely while embracing others with utter loyalty and commitment.  The transparency of Dylan’s affections means I am confident his ‘voice’ will be heard in the process of selecting a new key worker.

berrien-2016-104There are, of course, no promotion opportunities for parents; it is a role for life, with no possibility of moves up, down or sideways.  While that means there is no escaping the temporary anxiety of being far from your child, from time to time, it also means you are their continuity; the birth rock on which their whole life pivots. So although I don’t care for Dylan on a daily basis now, and am no longer the only person who knows how to do this, I am the one with the long view, holding his narrative together. That, I tell myself, is a privileged position to be in.

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A final key is for my daughter. She will turn 21 this week, a birthday we used to refer to as the  ‘key to the door’.  So this September I’m making wishes for both my children to walk  happily through their newly-opening doors …

 

Except for the photo of Dylan (looking uncertain in his Breton cap) the photographs were taken in Brittany in August.