Awkward Greetings: a neurotypical in autistic space

For many academics, now (before the marking comes in) is the ideal time to get away to a conference. As well as providing feedback on work in progress, conferences are a chance to network with colleagues from other institutions.

“You love it, don’t you.”  I said to a colleague as she put the finishing touches to a paper she is presenting in New York this week.

“Love what?” she replied.

“The conference thing.”

“Oh yes.” she said. “Absolutely. It’s my thing.”

Conferences aren’t my thing. They make me anxious. I have three issues with them. Firstly, they tend to be held in venues I find difficult to navigate;  I don’t like unstructured or open plan spaces with confusing layout and flow.  Secondly, I hate the eating arrangements at conferences; typically these involve juggling with a plate, cutlery, drink and conference papers while making small talk with a stranger, standing up. And thirdly I dislike the constant social demands. I don’t have an autism diagnosis but put these things together and a conference is likely to trigger my version of a meltdown: imploding in my room, avoiding everyone. I imagine the way academic conferences make me feel may be similar to the way Dylan experiences the world much of the time.

*

Developing enough self-awareness to recognise  conferences make me uncomfortable was helpful but it took years for me to admit that I didn’t enjoy them, even after I’d stopped going. Then, a couple of years ago, I was asked to give a presentation at a National Autistic Society (NAS) conference. This presented me with a dilemma.  I had been asked to contribute a parent’s perspective of supporting a young person with autism and intellectual disability (i.e. Dylan) into adult services.  This was a story I felt passionate about sharing; the experiences of ‘non-verbal’ autistic children and adults with a co-morbid diagnosis of intellectual disability are so often overlooked and I was delighted that the conference organisers were making  space to represent a narrative from this group.

I find it frustrating that Dylan is usually absent from accounts of what it means to be autistic:  the representations on TV, in film, in books, on the radio, on social media, in campaigns and (sadly) in training sessions and at conferences (even those which purport to focus on ‘autism’) tend not to have much relevance to my son’s life. I understand why this might be the case.  Those with intellectual disability as well as autism don’t always make for easy footage; there may be behaviour which is difficult to understand or which may challenge. If the young person or adult is also non-verbal the narrative is difficult to access; the process of advocacy is mostly conducted through language and without this people tend to be invisible.  Perhaps more importantly, those who are judged to ‘lack capacity’ as well as being ‘non-verbal’ are not only incapable of self-advocacy but unable to give consent to someone else to advocate on their behalf.  It is hardly surprising, given these layers of complexity, that people such as Dylan should be absent from accounts.

I am of the firm belief, however, that it is better to have the account of an advocate than to have no account at all; as I argue elsewhere, “if we are to include the perspectives of those with intellectual disabilities, we must accept the voice of an interlocutor” (Barrett, 2017, p. 5).  The invitation to speak at the conference was not something I could dodge; however difficult I found the process, I had to do this for Dylan. Besides, this was an NAS conference;  I would probably find the practices designed with autistic delegates in mind helpful.  I could, for example, wear a red badge to signal ‘please don’t approach me’ if I felt overloaded socially.  If I could be comfortable at any conference, surely it would be here?

*

So I went to the conference and, happily, all was well. I think this was because of the company of a couple of people I felt comfortable with and the privileged access I enjoyed, as a speaker, to a  sort of ‘green room’. I made heavy use of the room, retreating there with my plate of food at mealtimes and in-between sessions. I was conscious, during the conference, that I would probably not have found the event so comfortable were I attending as a delegate.  The NAS had introduced some thoughtful practices (such as the red badges) but these could not counter the usual challenges.

The venue involved difficult mezzanine spaces with noisy break out areas and cavernous rooms with difficult acoustics. As well as the lack of physical boundaries and the noise and cold, there was a lot of juggling with difficult food and a lack of private space. And I don’t even have an autism diagnosis, I thought to myself as I scuttled back to the Speaker’s Room after a presentation on the second day. But then neither did the majority of delegates, I reminded myself.  It was, after all, a Professional Conference, aimed at those who work with and support those with autism; a delegation from my son’s NAS residential home were attending the conference, for example.

The NAS annual conference provides an opportunity for autism professionals to reflect on their knowledge and skills, review new resources and network with colleagues in other settings.  Why, you could ask, should adjustments be made at a Professional Conference where the target audience are not (typically) autistic?  Well, yes.  Except that the NAS  (quite rightly) prides itself on making space for autistic voices. These were much in evidence at the conference; I probably heard more autistic than neurotypical voices, certainly from the floor and in the social space.  This is a good thing but, I reflected after the conference, it has implications…

*

Soon after I returned from the conference a friend told me how, meeting a new group of people for the first time, she had taken the hand of a man to shake it in greeting. But, she cringed, it turned out he wasn’t actually offering his hand:  “imagine how embarrassed I felt”, she said to me.  I could, I reassured her;  I had been equally embarrassed not to take a hand that was offered to me at an event at the NAS conference.  The hand I failed to shake belonged to someone who identifies as autistic and (I realised later when she confronted me about it) it had mattered to her that I hadn’t returned that handshake.  “I hadn’t meant to offend”, I told my friend. “Like you, I just misread the signals.”

Why was that I wondered? My undiagnosed autism or my neurotypicality?  Or perhaps simply because hand shaking  occupies an increasingly blurred space socially with many of us unclear of the rules?  And there is no agreement about the meaning of such behaviour either. While I may have upset the woman whose hand I failed to shake, not everyone would have shared her reaction.  This was brought home to me when a woman sitting next to me at dinner the next night told me that there was, apparently, someone at the conference who doesn’t shake hands.  “Isn’t it marvellous”,  the woman said to me, “that they feel able to say this?”  She seemed to enjoy the idea so much I didn’t have the heart to tell her that it was me and that, actually, I did shake hands really.

I don’t know whether this is an example of being ‘a neurotypical in autistic space’ or ‘an autistic in neurotypical space’ but I recall it as an incident which made me think about the challenges of being truly inclusive and enabling everyone to feel comfortable in a social space.  I have no idea whether autistic delegates felt any more comfortable with the social space than I did but I’m guessing that at least some of them may have shared my neurotypical discomfort.

*

What I quickly realised at the conference, however, was that autistic delegates were made very uncomfortable (understandably) by presentations which adopted a medical approach to autism and by the use of terminology which is not that preferred by the ‘autistic community’. One presenter came in for a particularly rough ride. He was presenting research from a project which drew on  development psychology and which was not framed within the discourse of a social model of disability. A number of articulate autistic delegates challenged the project’s attempt to scientifically classify different ‘autisms’ and the medical language which the presenter used. While I understood the objections of autistic delegates, I didn’t share the view that the presentation should not have been included in the Conference programme; on the contrary, I welcomed the challenge and an opportunity to think differently.

This was a couple of years ago now and I’m conscious that my recall may be blurred and even distorted by time. But the gist of the presenter’s argument (as I understood it) was that if we  can clinically identify different ‘autisms’, with differing profiles and needs, then we can plan more efficacious interventions.  This is an argument I find attractive; although I understand the ways in which Dylan’s autism links him with others who share his diagnosis, I am conscious of the way in which his co-morbid condition (intellectual disability) means his experience and needs are significantly different. If the clinical identification of different ‘autisms’ allows individual needs to be met isn’t that ‘a good thing’?

Well, not necessarily. The problem with identifying different ‘types’ of anything is that it divides people; the larger population is divided into sub-groups which do not carry the same weight as they did together and, inevitably, competition emerges between the groups for resources and representation.  The attempt to support a sub-group by specifying their particular needs can thus undermine support in two ways; firstly, by the articulation of multiple and competing messages about the thing in general (‘autism’) and secondly through the emergence of hierarchies in relation to things in particular (the different ‘autisms’).

An example which the presenter gave struck a chord with me. He described how (in the US, where he is based) a group of autistic people without intellectual disability and with self-care skills and the potential for independence had initiated a campaign to close down the residential settings which had previously provided accommodation for autistic adults. The group had been well-organised, vocal and very effective in articulating their position in the community and on the media; their aim  was to challenge the concept of residential care and the discourse around such provision.  The presenter described how he had  challenged the campaigners:  ‘But the homes are not for you!’ The problem, the presenter explained, was that these autistic campaigners were undermining the availability of provision for other groups of autistic adults; for those  adults with co-morbid diagnoses who need additional care, residential living may be a good option.

The suggestion that different ‘autisms’ should be clinically classified did not go down well with autistic delegates at the conference because of the framing of the presentation within a model of disability which appeared at odds with the current discourse.  As the mother of an autistic son with additional needs, however, I could see the potential value in such sub-classification.  It is fantastic that autistic people who are capable of representing themselves are doing so but the problem with listening to some autistic voices is that others get lost. What are we going to do about the autistic people with intellectual disability who lack capacity and who don’t use speech to communicate? Without someone to advocate for them, they are not even in the conversation.  The idea that there is an ‘autistic community’  and that it speaks for all those with an autism diagnosis is, of course, a myth.

*

One of the best sessions I went to focused on language; a panel of ‘experts’ made position statements before a general question and answer session with the audience. The discussion was useful with deep attention paid to choices about person first and identity first language. The knotty issue of whether autism could ever be an ‘identity’ for someone with intellectual disability and who ‘lacks capacity’, however, was not tackled.  Nor was there a single mention of the difficulty posed by ‘learning disability’ as opposed to ‘intellectual disability’. As is perhaps clear from my own language choice, I prefer the term ‘intellectual disability’. This is because I find it a more exact way to describe Dylan, who is perfectly capable of learning and who is learning all the time; the fact that Dylan has not learned the same things as other people of his age is because he has a cognitive ‘impairment’ – a disability of the intellect – and not because he is unable to learn.

Although ‘intellectual disability’ is recognised terminology internationally, and used in many other countries (including the USA), in England we say ‘learning disability’. I make a real effort to use my preferred term of ‘intellectual disability’, and to apply this consistently, but it is very hard when other people don’t;  because language is about communication, for the sake of clarity I will sometimes adjust my own language so that I am understood by others. It occurred to me, at the conference, that if no one is talking about the language we use about people like Dylan, we are a very long way from bringing them respectfully into a respectful conversation.

I worry that autistic adults such as Dylan are not only absent from the conversation, but not even in the room.  While I was pleased to be invited to speak at the conference, and to describe my experience of supporting Dylan through the process of transition to adult care, there were no other sessions  at the conference which felt relevant to my life or to Dylan’s. The staff who had travelled down from Dylan’s residential home for the conference reported this was typical; ‘it’s not usually aimed at those with learning disabilities’, one of them told me.  An attempt had been made to acknowledge the diversity of interests at the conference through the organisation of sessions into different ‘streams’. I’m not convinced these worked, however; I found myself hankering after a ‘parents strand’ or a ‘Learning (sic) Disability’ strand so that I could find somebody who spoke my language and could understood my silence. Perhaps what is needed before we can find what unites us is a safe space to talk about our differences?

*

I intended to write this piece immediately after the conference; I have no idea why it has taken me so long to write, except that I find these issues challenging and my position is still evolving.  I’ve no doubt that the piece I am finishing today is a very different one to the one I would have written two years ago. What hasn’t changed, however, is the main impression I came away from the  conference with: that little attention is paid to those like Dylan who have intellectual disability as well as autism. Great leaps forward have been made for many autistic people in recent years, largely because of their own efforts and the fantastic contribution they have made to campaigning organisations, such as the National Autistic Society, through self-advocacy.  Part of me is heartened by this but I am also worried that the different interests of those who can’t self-advocate are lost in this process.

The NAS started life as a parents’ organisation and I imagine that, in the early days, most of the support it offered was to parents, such as myself, who needed to learn how to care for and support a child with autism and intellectual disability. The NAS is no longer a parents’ organisation, primarily, and this leaves a gap in provision.  As became clear to me at the conference, the NAS is not a professional organisation either (even though the annual event is billed as a ‘Professional Conference’). I’m not clear who the NAS is for; it  seems to be trying to be all things to all people but in the process is, perhaps, failing to meet all our needs.

The Book Hedgehog

In a previous post I lamented the departure of a member of staff who had coordinated the social enterprise activity at Dylan’s setting. During the recruitment process for a new social enterprise coordinator, the workshop and shop at the residential setting remained closed to members of the public and to residents.  This meant that there was a gap in Dylan’s daily schedule which had to be filled with alternative activities. Although staff did their best to keep Dylan purposefully occupied, he was more unsettled during this time and clearly missed his work in the shop.

In my post in December I described how, on the run up to Christmas, Dylan had been insistent that the shop be opened so that he could make the holly wreaths which he associated with that time of year.  I reflected:

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

I am very happy to report that a new social enterprise coordinator is now in post and that Dylan has resumed the ‘anchoring rhythm’ of his daily work in the shop. This seems to be going well. Since the shop re-opened Dylan has been more settled and has seemed generally happier.  As well as enjoying the rhythm and structure of working in the shop, it helps that Dylan knows the new coordinator; ‘J’ worked at the National Autistic Society school which Dylan attended so she is a familiar face. Not only does this mean that trust is already established, the continuity in terms of J’s knowledge of Dylan’s interests and skills is fantastic.

The arrival of J has provided an ideal opportunity to review Dylan’s work and to introduce new activities.  Since the social enterprise activity resumed Dylan has participated in a range of arts and crafts activities including candle making, paper printing and model making. He has also made ‘book hedgehogs’; these are ingenious creations, made by cutting the pages of a book. I am told that Dylan worked carefully and methodically at the hedgehogs; this is not something I would have expected Dylan to enjoy and reminds me (again) of the importance of keeping an open mind. As well as introducing Dylan to new activities, J is planning to continue the woodwork which Dylan enjoys so much.  She has identified some fantastic potential projects for Dylan and a new woodwork bench is due to be delivered.  Some new, and more accessible, qualifications are also planned.  Exciting times ahead for Dylan and the other residents  🙂

In my December post I drew a distinction between ‘consistency’ and ‘constancy’, suggesting Dylan might need the latter more than the former.  At the moment, serendipitously, Dylan seems to have both; the new coordinator provides Dylan with some consistency while the work offers him constancy.

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.

Sun And Rain

One of the things I enjoy about being at home for Christmas is the way it helps me to see familiar objects in a new light. This is partly a consequence of living in a smallish house;  to make space  for a Christmas tree I have to move things around a little. This year, the tree is behind the front door. As well as creating challenges for Postie and me (I have to scramble beneath the tree to retrieve the mail as he slides it gently through the flap) it means Dylan’s favourite picture is currently obscured by spruce.

I’ve written previously about Dylan’s love of art and the importance to him of a Munch print that hangs on our living room wall. He ‘talks’ about this image even when we’re away from home and the recollection of it is only in his memory: lamp, curtain, cross on the floor, he says. So I figured Dylan wouldn’t miss Munch behind the spruce; he would enjoy peeking through the branches at it, perhaps. And the process helped other images to step forward. Look at the light on the bubbles Dylan, I said, as I finished rearranging the room…

I don’t know if Dylan (or, indeed, the artist) sees bubbles, but I think of rain on glass or water in a bottle when I look at this print, by the artist Sarah Sharpe.  Sarah submitted the piece – entitled Spiritus –  as part of a cross-arts initiative in which visual artists were invited to respond to a selection of poems in a newly-published anthology. Spiritus, entered in response to my poem ‘Lighteater’, was one of the winning images.

Lighteater

Sunday afternoon: a west-facing room.
The sun streams through a pane of glass
above the door, casting a column of held light,
a slide of particles suspended in the air.
My silent son moves trancelike into the room –
walks deliberately as if drawn on thread –
cups his palms together then reaches up
above his head – tries to hold the shaft of sun
in his hands – tries over and over, lacing
his fingers tight then unclasping them.
Surely he has seen this play of light
a hundred times?  Today he is absorbed by it –
tilts back his throat so that his face lifts softly
like a moth to the source – opens his mouth
and walks forward, arms outstretched, the length of it.

 

In ‘Lighteater’ I celebrate Dylan’s relationship with the sun. When I look at Spiritus, I see rain. I like the fact that the companionship between poem and print is elemental, rather than literal; this bringing together of light and water seems to me to be at the heart of their dialogue. The pairing of verbal and visual text also helps me to understand something about Dylan; that his fascination with water is perhaps, at least partly, about its relationship with light.

I wasn’t familiar with Sarah’s work prior to the arts initiative with which I was involved. At the event to announce the prize winning images, however, I discovered that one of the influences on Sarah’s work is her experience as the mother of a child (now an adult) with disabilities. The correspondence in our situations feels to me to be at the creative core of the dialogue between poem and print and in our shared identities as mothers and artists.

 

Notes:

 

Heigh-Ho, Heigh-Ho…

I’ve written about the social enterprise activity linked to Dylan’s care setting in previous blog posts.  This is a craft and horticulture enterprise with a small retail outlet through which the produce and makings are sold to members of the public. The residents at the home are fully involved in the enterprise and work in the shop, supported by members of staff and the social enterprise coordinator.

When Dylan first moved to the residential setting I didn’t pay much attention to this aspect of the provision. While I supported the principle behind the initiative it wasn’t something I thought Dylan would access; he had never shown any interest in gardening, small animal care or crafts, as a child or adult, so it’s fair to say that I viewed the social enterprise activity on Dylan’s timetable with scepticism.

How wrong I would turn out to be. Dylan’s regular afternoon sessions in the shop proved a great hit with Dylan and the source of some of his most significant learning. Since Dylan moved to the residential setting, just over two years ago, he has taken part in a range of activities including woodwork, jam-making, gardening and the production of arts and crafts. Dylan has also worked in the shop, serving customers.

One of the factors which seemed to be key to Dylan’s engagement with the social enterprise activity was the coordinator (I’ll call him A) with whom Dylan developed an excellent relationship.  Dylan seemed to realise that A had a different role to the other staff at the home and this allowed Dylan to adopt a different approach to the relationship. The difference is subtle but significant; because the coordinator is not involved in personal care, an alternative form of trust and closeness was able to develop.

There have been many highlights to the social enterprise activity which Dylan has taken part in since he moved to residential care but the one I would pick out, first and foremost, is his woodwork.  One day, apparently, A  noticed Dylan gazing over the fence which separates the home from a neighbour’s property. Dylan was transfixed by the neighbour’s  shed where a range of woodworking tools were kept. When this happened on several occasions, A decided to take Dylan to a local lumberyard in order to choose some wood and begin a simple project using some basic woodworking tools.

The results were quite extraordinary. Dylan demonstrated a love of working in wood and some good skills. In time, he was producing goods for sale in the shop.  Dylan, apparently, had several orders from members of the community for these wooden planters, which I was informed by A represented ‘90% Dylan’s own work’  (including the painting, which Dylan also enjoys).

Another highlight of last year’s enterprise activity was when residents at the home entered some of their produce in the local agricultural show. Dylan took 3rd prize for his strawberry jam and another resident was awarded first prize for a pot of apricot and passion fruit. These entries were judged alongside produce from across the region so it was an amazing achievement – and as A pointed out to me, ‘strawberry jam’ is a popular category so Dylan did really well.  The icing on the cake (or the ‘toast under the jam’) is that all of this activity has been recorded in support of a folder of work towards an ASDAN qualification.

When Dylan moved to residential care I was told that health stream funding would mean an end to formal education for Dylan.  It is through Dylan’s residential place, however, that he has accessed the only educational provision he has received since leaving school at 19. The ASDAN framework for these activities is, of course, a plus; what is important is that Dylan has enjoyed the activities and engaged in some valuable learning. As the basis for personal development, the social enterprise activity has been fantastic.

One of the unexpected bonuses of Dylan’s relationship with A has been ‘brum brum’ time. Dylan has a deep interest in vehicles. He loves to watch me drive and often ‘asks’ me about the controls, particularly the gear stick, which fascinates him. Staff noticed that Dylan would often stand watching as A cut the grass with the ride-on mower.  ‘Brum brum’, Dylan said one day. After discussion, it was decided that Dylan would be allowed to ride with A (without grass-cutting blades) in order to get a close-up experience of driving.  For Dylan this was joy indeed!

You might have detected my use of past tense and references to ‘last year’ rather than present time. The reason is that since the end of the summer, following A’s departure for a new job, the programme of social enterprise activities has been on hold. I was surprised and (selfishly) disappointed by the news of A’s resignation, but not exactly shocked; the departure of Dylan’s much-loved key worker earlier in the year had alerted me to the fact that staff move on and that Dylan’s life in residential care will be a series of Hellos and Goodbyes.

Christmas makings, 2015

This is difficult as Dylan forms strong bonds and attachments. Dylan has struggled in the past with the sudden  absence of loved people; the death of his grandmother and his sister leaving home are significant examples but there have also been school and care staff who Dylan has missed enormously when they have moved on. For this reason, I was anxious about how Dylan would react to A leaving; not only would there be an interruption in the scheduling of activities which Dylan has come to enjoy, he would surely miss having A in his life more generally?

Dylan’s wreath, 2016

In the event I didn’t see any obvious reaction from Dylan in the weeks following  A’s departure; Dylan was unsettled some days, but not in a way which could be specifically linked. I was mildly surprised. Perhaps Dylan hadn’t enjoyed the social enterprise activity as much as I imagined? Maybe he thought A was on holiday and would return? Or could Dylan be more flexible than I thought?  I was a little disappointed as well as relieved; while I was glad Dylan didn’t seem distressed, part of me had wanted it to be important enough to Dylan to miss and mourn.

Dylan’s wreath, 2017

Then, in the last two or three weeks, a development. One of the support staff has been opening up the shop one afternoon a week in order to keep things ticking over until a new coordinator is appointed. Dylan pointed at the shop one day, insisting ‘Chri’. It took me a while to realise that Dylan was saying ‘Christmas’. Social enterprise time has been used to make wreaths and hampers to sell in the shop, in previous years, and although Dylan has only lived at the home for a relatively short time this must have become an important way marker for him. While Dylan had coped with the interruption of his regular social enterprise activity, he was not going to accept the absence of Christmas activity. So last week Dylan made a wreath for our door and put together a hamper for his Granddad…

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

The closing date for applications for the coordinator role has now passed and I am fingers and toes crossed that Dylan can get back to his woodworking and ASDAN qualifications  soon 🙂