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.


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.


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.


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.


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.




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.


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.


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.


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.

Zen And The Art Of Caring: the swept path

wet leaf fall 004The Anglo-Saxon name for an October moon isn’t Falling Leaf Moon without reason; for the last few weeks I’ve been meaning to sweep my front path. Dylan will slip on those leaves, I’ve kept telling myself.

Since Dylan started going to and from school on local authority transport at the age of five he has had the habit of hurtling at high speed into the house on his return. Without stopping to look or check for potential obstacles along the route he sprints like a German ICE or Japanese Bullet train to his destination. This habit has stayed with Dylan through 19 years of schooling and four different houses, three different schools and dozens of different drivers and escorts.

Although this behaviour may not appear unduly worrying it can be problematic. There are pedestrians, for example, who may be knocked to the ground by whirlwind Dilly. As the behaviour continues year round, unchecked by weather conditions, there is the danger that Dylan could fall badly in icy weather (or wet autumn leaves). And there is the possibility that in Dylan’s 50-250 yard sprint (depending on where the minibus has managed to park) he will encounter something to spook him – a dog say – and throw him catastrophically off his stride and into passing traffic. For in this brief time, Dylan is beyond any supervision or control; all a carer can do is stand back and watch, fingers crossed.

While the home sprint may be relatively low-risk, I worked with Dylan’s teachers and escorts periodically to try and re-shape the behaviour. We tried rebus symbols, rewards and changes to the drop-off routine but nothing made a difference. Eventually I gave up, thinking that perhaps once Dylan left school it would no longer be an issue, especially as the behaviour seemed to apply only to local authority transport (Dylan walks perfectly calmly into the house from cars and public transport). The behaviour appears, however, to be deeply embedded; Dylan has continued to sprint into the house from the minibus which now brings him home from his adult day centre.

wet leaf fall 005I must sweep these leaves up, I said to Dylan as I locked the front door of the house one morning last week: I’ll do it tonight. I put Dylan on his minibus and raced to work. I am always rushing to and from work. I have perfected the art of being back in time for Dylan’s bus while wringing every last minute from the working day; I know the shortest time it takes from desk to front door and I almost always bank on it. It’s a vital calculation; get it wrong and the consequences are horrible. Dylan would not understand, if I wasn’t home, why he couldn’t get off the minibus. Having to wait for me to arrive would not only distress Dylan but would have knock-on effects on other service users and families.

When Dylan was at school I was aware that local authority transport was only allowed to wait for an absent parent for so long before taking the uncollected child to what I always thought of as ‘the pound’. While I never had had to retrieve Dylan from such a place, I did slip up a few times. Usually I was stuck in traffic within striking distance of home; over a 15 year period, given that I’m a single working parent, that’s not bad. I always cut it fine though and one thing my calculations never seem to adjust for is the sweeping of paths: I didn’t, of course, get home in time to do this last week.

The swept path

wet leaf fall 001So when I got Dylan off the bus that night I hollered slow down, you’ll slip as he raced towards the house. The bus had had to park further away than usual that night due to workmen; as I had walked up the road to get Dylan I told them they might want to stand back a bit as in a moment my big boy would come tearing past at high speed – which is exactly what happened, with me in hot pursuit.

I don’t know what I expected to gain by chasing after Dylan like that. He is nearly 21 and in his physical prime. I wasn’t going to catch him. Even if I kept him within ear shot he wasn’t going to listen to my exhortation to walk. So haring after him, I now realise, was pointless and silly. But that is what I did and yes, you’ve guessed: I fell on the unswept path. And I went with such a bang and a crack on those wet leaves I lay dazed on the ground wondering what on earth I had done and what I would do next. When I limped into the house Dylan had his arms clamped around his ears, a sign that he was distressed. So instead of letting myself cry or peel off my clothes to inspect the damage I said ‘mummy fell’ then maintained our usual routine of reading and signing Dylan’s link file entry about his day. I would deal with the blood and bruises later.

wet leaf fall 008Happily they turned out not to be so bad; a few days later and I am already mending. I could have done without that fall though; it has made caring for Dylan and myself, as well as working and doing things like driving, slow and difficult. The first night, struggling to cook, shave Dylan or type, I chided myself for not keeping a swept path. I need a more zen approach to caring, I told myself; taking a few moments for small tasks, like clearing leaves, could make a difference to my well-being.

wet leaf fall 009So the next day I swept my path. It only took ten minutes but from that short time I took something valuable. And while I was sweeping I remembered a poem about a swept path. The poem, by Helen Farish, is not about autism; the narrator is learning to care for lavender, rather than for a child. The process Farish describes, however, and its impact on her sense of self, resonates with my experience in many ways. Farish reminds me to celebrate myself; this week the achievement I am most proud of is, indeed, my swept front path.

Helen Farish

She loves the radio, the freedom it gives
to listen out the back as she’s passing to and fro
or sitting in the half-house half-garden room

on a midsummer’s Sunday evening
listening to a three-hour programme on the monsoon,
and the front door is open and the back,

and every now and then the setting light
coming past the lavender she’s recently started caring for
and the honeysuckle she never used to notice nor those roses

hidden till she chopped back the buddleia – the light
coming past the flowering jasmine and the hanging basket
she’s so pleased with stops her,

makes her see how much of her life
has been lived in this house,
that she’s become who she is here

and what she will remember of these years is not
the times when living alone seemed a problem to solve
but the peace:

looking at a house she has done her best in,
loving small successes, the hanging basket, the picture in the half-
house half-garden room, that repotted plant,

and her larger successes – allowing herself the pleasure
of a three-hour programme on the monsoon
sorting through a box of postcards with a green glass of gin,

wet leaf fall 011seeing all those places she’s been to: but her journey
to this programme, her swept front path, this is
the one she’s most proud of.


Helen Farish, ‘Programme’ in Intimates (Cape, 2005)

Reasonable Adjustments: working and caring

May 011I went back to work recently after having some time off sick at the end of the summer. I had an infected ear as a result of Dylan’s attempts to remove it and stress-related symptoms which made it hard to concentrate. Previously I’d managed the demands of being a carer alongside a full time job but last month I knew I had reached my limit. I had never had a sick note before: what do I do with this? I asked my General Practitioner.

I’ve almost caught up at work. It helps that Dylan has been generally calmer in the last few weeks; although there have been occasions when he has become distressed, I’ve managed to head off potential incidents. Being able to predict the signs, and having some strategies for settling Dylan, help me feel more confident. I wouldn’t say things are alright, but I’m treading water not drowning.

The cost of adjustments

2013-11-30 16.39.46Dylan may be calmer due to some of the changes I’ve made in his care. One intervention which seems to have made a difference is removing high-sugar foods from Dylan’s diet (I have written about this here and here). This change has come at a cost, however, as implementing it sensitively has meant the removal of some of Dylan’s favourite routines.

Dylan was in the habit, for example, of going to a cafe following a weekly trip to the library. Because this routine was embedded, in order for Dylan not to have cake I have had to remove the library visit from his schedule. Another activity which has had to stop, at least for the moment, is the cinema. When I first started taking Dylan to the cinema I used sweets as rewards for appropriate behaviour; as the habit of buying sweets continued, if I don’t want Dylan to have them it means no cinema visits either.

Kent August 2012 171As well as changing Dylan’s routines I have had to adjust the way he accesses the community. While previously I would take Dylan most places, providing I had a back-up plan, there are now some activities I wouldn’t attempt alone. My new risk assessment has to involve a consideration of how I would protect Dylan and myself, as well as members of the public, if Dylan became distressed. Because of the changes in Dylan’s behaviour he now receives 2:1 support in respite care and has access to a team of staff at his day centre.  I can’t provide this level of support at home but weekends would be impossible if we never went out so I do still take risks.

Four Days

While looking after Dylan used to be relatively low key it now requires my constant focus. Evenings and weekends are no longer a rest from work but rather my busiest times. I have always regarded caring a full-time responsibility but since June it’s felt like a full time job.

limitsFortunately, as it turned out, I’d negotiated a reduction in my working hours before the changes in Dylan emerged. It wasn’t that I had a crystal ball and had foreseen that home life would become challenging; I requested reduced hours because the education provision I had spent a year fighting for was due to start in September (you can read more about this here and here). While I was delighted that my effort to secure this had paid off, it meant that Dylan’s day would now end at 3pm. This presented me with a problem I could only solve by reducing my working hours.

Dylan had been accessing education provision one day a week as an interim measure so I had already had a taste of how difficult things would become for me after the summer. The situation reminded me of primary school years; when my children were young the lack of fit between the end of the school day at 3.30 and the end of the working day at 5.30 was a constant source of stress. After my marriage broke down, this exacerbated; as a single parent I was dependent on after school club for my daughter and on my mother or a childminder for Dylan. The situation eased as the children moved to secondary school; although never easy, their end-of-days became more manageable. Now, it seemed, Dylan would revert to primary time.

While it’s hard to find satisfactory childcare for an autistic child it is almost impossible to find for a ‘high need’ autistic adult, especially for a handful of hours on the edge of a city. With Dylan’s education provision set to increase from September I would have to work shorter days and collect Dylan myself.

The cost of flexibility

2013-10-17 12.42.01Parents of disabled children and adults have been entitled to request flexible working patterns (part-time working, compressed hours or working from home) under employment legislation for some time. A 2013 survey of working parents of disabled children (conducted by Working Families & Mumsnet) reported that the most important factor keeping respondents in employment was flexible working (36.5%) and an understanding employer (21.2%). My employer has, over the years, made it possible for me to continue to work full-time by accommodating my requests to work flexibly. My classes, for example, are not timetabled until 10am, giving me leeway in case Dylan’s transport is running late. It isn’t easy – I’m often running at high speed between places and I never take a lunch break – but I manage.

From June 30th this year the right to request flexible working was extended to all employees with 26 weeks of service with an employer. Employers have always had the right to refuse a request to work flexibly if they can demonstrate an adverse impact on business. Multiple requests for flexible working could potentially increase their ability to claim this; if everyone started teaching at 10am there would be an awful lot of empty classrooms in the early morning. It will be interesting to see how the extension of the right to request flexible working impacts on requests granted to employees with caring responsibilities.

The guidance which has been issued to employers includes suggestions about what to do if several employees request the same thing. As ever, the distinction between what an employer is required to do and what they are encouraged to do is critical; there are more ‘shoulds’ than ‘musts’ in the revised legislation. Bearing this in mind, I’m happy with the agreement I secured of a temporary one year reduction in my contracted hours.

The fifth day

2013-12-20 09.56.41

What might have been…

I had an email from a parent last week asking whether I could update her on the education provision I’d been involved with setting up. She had heard it was open – was this true? And had it kept its original purpose to provide for ‘high need’ adults? By the way, she hadn’t seen me and Dylan at the inclusive cinema screenings recently – she hoped we were alright?

The email brought home to me how much had changed and how quickly. I replied that the new provision was indeed open but that changes in Dylan’s needs and funding meant it was no longer appropriate for him. Of course I don’t begrudge another young person taking up the place which Dylan might have had but I feel sad that he won’t access the provision I lobbied so hard for.

So, as it turns out, I don’t need to pick Dylan up at 3pm after all. For the moment, he is attending his day centre (which operates longer hours) five days a week. Still,  I’m glad for my fifth day. It helps to be able to leave work early enough to have a break before Dylan arrives home from his day centre. The time is also invaluable for doing the chores I can no longer manage at weekends; Dylan used to enjoy shopping with me but with so many of his favourite foods off the menu, and his behaviour unpredictable, this isn’t an option anymore. The fifth day, I’m discovering, helps me tread water.

A reasonable sacrifice

2013-10-17 12.41.52It must have been on a day off that I caught an item on the TV news about downshifting to a four day week. Two young researchers (themselves part-time) were being interviewed about a report they’d authored expounding the benefits of 0.8 employment contracts. Naturally I listened in. All seemed to be going sweetly until the interviewer asked the million dollar (or rather 20%) question: how many people did they imagine could take such a hit to their pay?

There is no getting away from the impact on disposal income; not everyone could sacrifice a fifth of their income or make good the loss from a savings pot. So while it’s great that we have the right to work flexibly, it does come at a cost (and one which is often borne by women). Ironically those most in need of flexible working may be least able to sacrifice income: if you’re on your own no one else is going to pay the mortgage or build your pension. While I’ve never regretted leaving my marriage I am continually struck by how hard it is to bring up a disabled child alone. Two’s certainly better than one if you can keep it together.

There’s a storyline in the BBC Radio Serial The Archers at the moment which involves independent entrepreneur Debbie Archer giving up work to look after her child. Actually it’s not clear whether she’s staying home on account of the child (who she has brought up on her own so far) or the new man in her life. Debbie’s mum Pat, an activist and Greenham Common veteran, is troubled by her daughter’s decision. Listening to Pat bewailing the death of feminism the other evening I almost capitulated on my decision to cut back my hours; income, I realised, isn’t the only thing I stand to lose. Still, I can understand where Debbie’s coming from. Mothering. Caring. These are important. They make a contribution to society and to the lives of those we love. Dylan is calmer now. I have more space in my week to support him and to ease his transition to what lies ahead. It’s a reasonable sacrifice.


The photographs were taken by me except for the roller coaster (a gift from a friend, original source unknown). I took the photos of the steel helter skelter at the Electric Works, an office building in the city where I live. I attended a conference there last year on women in the workplace so the photos seemed appropriate. I loved that office workers were using the helter skelter instead of the stairs; I watched people on the top floor casually taking a sack from the pile and, sandwiches in hand, sliding out of the building for their lunch break. A perk worth working full time for perhaps 🙂


The Working Families ‘Working On Campaign’ aims to:

  • raise awareness of the difficulties faced by parents of disabled children who seek to combine work and care;
  • encourage change in childcare provision and employment practices to enable parents of disabled children to remain in work;
  • change attitudes so that it is recognised that parents of disabled children can work but need support to remain in employment.

Useful resources:

The Emptying Nest: autism and leaving home

Renishaw Hall

Renishaw Hall

The start of the academic year can signal a new phase of life for parents as well as 18 year olds; over the last few years I have watched my fifty-something friends learn to cope as their sons and daughters depart for university. Empty nest syndrome, I claimed, was one thing I would be spared.

Although I try to offer Dylan age-appropriate opportunities, the nature of his disability affects the timing of key milestones. For many years I was determined that Dylan would experience being away from home in the same way his non-autistic peers leave for university. I discovered, however, that it is virtually impossible to access funding for this; residential places tend to be associated with crisis rather than choice. Dylan therefore continued to live at home after he left school and I avoided the challenge of an empty nest.

26 years

Renishaw Hall

Renishaw Hall

As it happened, by the time Dylan left school I was glad he wasn’t going away.  Although Dylan’s chronological age was 19, developmentally he was around five years old (I reflect a little more on the gap between chronological and developmental age here). Very few children are sent away from home at such an age and those who are often report painful memories of their early separation from family. My instinct was that Dylan needed longer at home.

I was aware, however, that I couldn’t look after Dylan forever; we are on reverse physical trajectories and caring for Dylan alone was becoming increasingly difficult. I have always believed that 26 is the age we tip from child to adult, leaving behind the experimental years for something more settled; as Dylan reaching this age would coincide with my retirement it seemed an appropriate year for me to set as a watershed for Dylan leaving home. I knew this could only be aspirational – some autistic adults continue to live with their parents for much longer – but it would give us something to prepare for, practically and emotionally. There wouldn’t, I told myself, be any sudden emptying of the nest.

Sudden absence

Renishaw Hall

Renishaw Hall

It is natural for parents of disabled children to feel protective but I have perhaps been more inclined to this because of my experience with my daughter. While I might not have had to face an empty nest I have had to cope with sudden absence. When my daughter was 14 she failed to return after a routine access visit to her father; for the next year I didn’t have any contact with my daughter or know anything about her life or how she was. The only information I received was through my solicitor’s communication with my ex-husband’s solicitor; the details are a case study in how not to co-parent a child following divorce. That story is not for here; this week, however, I made a link between my expectations about Dylan’s future and my daughter’s departure. To draw this connection I need to reflect a little more on my daughter’s sudden absence.

The prodigal

Wyming Valley

Wyming Brook Valley

My daughter would be 16 before I saw her again. By the time her father and I had slugged things out through the courts she was settled in a new school and country. Although I hadn’t wanted her to leave, in time I adjusted to her being elsewhere. Nothing would ever make Dylan or I as happy as having her home but eventually we embraced the gains as well as the losses of living on our own. Dylan and I drew closer and he benefitted from having more of my time, attention and support than he would otherwise have received. When my daughter decided to resume her schooling in England and returned to live with us, we all struggled; she had got used to a different way of life and in the years she had been gone Dylan and I had got used to our own way.

When my daughter decided to return to Scotland for the final year of schooling I thought it wouldn’t feel as bad as before; this time it was my daughter’s decision rather than one that had been made for her and she was a young adult now, not a child. Still, I suffered; the prodigal had returned only to leave again. How could I have been so careless as to lose a daughter twice? One day, hopefully, I will make better sense of it; for the moment I tell myself that life is complicated and decisions often multi-factorial. As Pascal reminds us: la coeur à ses raisons que la raison ne connaît pas.

Written on the body

Renishaw Hall

Renishaw Hall

If the heart can direct us with its reason then so can other parts of the body. The first time my daughter left, my back broke down catastrophically. After the initial shock at my physical collapse I wasn’t surprised; my back had behaved this way before when I was in deep grief. I have heard it said that the spine represents esteem and that back problems arise when our sense of self is under threat; my daughter’s disappearance certainly undermined my identity as a mother.

I was immobile with pain so decided to see an osteopath. The one who was recommended and who I have seen since is a Hakomi practitioner who, as well as working miracles on my body, offers me alternative ways of thinking. Once my back improved the pain moved into my left jaw; it was so bad I could barely open my mouth. I had extensive medical investigations which revealed nothing. Have you considered that the difficulty with your jaw might be about the blocked communication with your daughter? the osteopath ventured one day. It may be coincidence but after my daughter made contact my jaw healed. When she left the second time my right arm developed a problem which didn’t resolve until I’d learned to live alone again (without my right hand daughter).

Bolton Abbey

Bolton Abbey

Last year I developed a left shoulder problem. At first I assumed this was an injury I had picked up in the gym (showing Dylan how to use kit I didn’t know how to use myself) but the osteopath offered an alternative reading: that shoulder might not improve until you can put down your shield. I had been fighting for provision for Dylan for so long I was battle-weary and bowing under the weight of my shield, she suggested.

In the weeks since I heard that Dylan’s funding has been approved the ache in my left shoulder has eased. This week, however, I complained to the osteopath: I’ve had a terrible acid stomach for days. I don’t understand why, I told her, I don’t usually have stomach problems. Perhaps there’s something in your life you’re finding hard to digest right now, she replied.

Empty or emptying?

My daughter in a tree on the  Isle of Skye, 2009

My daughter in a tree on the Isle of Skye, 2009

During the last four years I’ve sometimes felt less than sympathetic towards parents with empty nest syndrome; they have had the satisfaction of supporting their sons and daughters to a planned departure at 18. What was there to mourn? With Dylan still around, and having already coped with my daughter’s absence, I would be spared the dazed emptiness I saw in the faces of friends and colleagues who had waved their children off, I told myself.

My stomach, however, may be telling me something else. Last week my daughter visited to say goodbye before she leaves for university in France. I was surprised by my sense of loss; although we had spent the last four years learning to live apart there was something different about our leave-taking this time. After I dropped her off at the railway station at the end of the visit I sat in the car park and cried; this, I thought to myself, must be the empty nest.

Wedding meadow 015

Harper Lees, Hathersage

Perhaps when my daughter is safely settled in her new life I’ll start to relax. It’s possible, however, that the thing that’s hard to digest is not my daughter leaving but my son. Given changes to Dylan’s support needs, funding for residential care has now been approved. I know this makes sense; I am struggling to keep us both safe during ‘incidents’ (though there have been far fewer since the introduction of a low-sugar diet) and can’t offer the level of support Dylan needs to access the community. But when Dylan is his gentle self it is hard to accept the need for something I had thought wouldn’t happen until he was 26. My daughter had launched herself from the nest but Dylan would need a push; being left with an empty nest is one thing, emptying it myself quite another.


Shakespeare's Church, Stratford-Upon-Avon

Shakespeare’s Church, Stratford-Upon-Avon

So I have been trying to digest the implications of this and figure out what is best for Dylan. I am well-supported; Dylan’s social worker, health care professionals, and his day and respite service are all in regular contact. The sense of community around us will make a difference to our capacity to manage the decision-making process I’m sure. Dylan and I have visited settings and drawn up a shortlist of providers. We are now at the point where a decision has to be made about whether or not to take one of these forward. I have been prevaricating; on good days I can see no reason why Dylan can’t continue to live at home but on difficult days I am resigned to him leaving, like his sister, suddenly and earlier than planned.

The blog community, I have discovered, can offer practical and emotional support to its members like any community. The other day I was reading the latest post from Juniper Hill Farms, a community setting in the US. The post reflects on communal living and some of the issues that can arise in relation to food choices and responsibility to others. As I was reading the post I was reminded of the benefits of communal living and of the opportunities for learning and development which such settings present. I could, I reflected, consider a residential place an opportunity for Dylan rather than a loss.

Roseberry Topping, Yorkshire

Roseberry Topping, Yorkshire

The Juniper Hill post also reminded me of the importance of finding ways to involve Dylan in decision-making; a paper cited in the post, on the right of people with developmental disabilities, argues:

The crux of the issue is that interdisciplinary teams (educational or residential) should not make decisions about the client’s future without client input (Bannerman, 1990, p.85)

Dylan at Lea Gardens, Matlock

Dylan at Lea Gardens, Matlock

This is going to be one of the key challenges for me in the days and weeks ahead. What makes the difference to how we feel about change, I think, is choice. When my daughter took control of her life and made her own choices about where to live and study it was easier to accept and support these. Choice may leave a parent crying in a car park but that is easier to stomach than the unease created by decisions made for a child or young person by someone else. The significance of Dylan’s disability makes it more difficult to involve him in decisions about his future but I have some ideas for ways I can try. An empty nest has to be better than emptying the nest and if I can think creatively about Dylan’s voice then, like his sister, he might fly.



Bannerman, D.J., Sheldon, J.B., Sherman, J.A. and Harchik, A.E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties: The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behavior Analysis, Vol. 23, Number 1, Spring 1990, pp 79-89


All  photographs by Liz