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.

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 🙂