Day 74: Moon

moon14day-1985c Dylan’s residential home is in the dip of a valley in a semi-rural area with only thin fingers of light from nearby towns. His bedroom window looks out on open fields and sky. I imagine he loves the blackness at night and the sharp silver of the stars. Last night, as I drove Dylan back to the home after my regular Wednesday visit, a mesmerising moon glowed gold as a lantern in the sky.

‘Look Dylan, Moon’ I said.

Moon is a word Dylan has known since he was small; one of his first words in fact. It is something Dylan and I talk about; he tells me if he spots a moon on a billboard and sings ‘moon’ when we pass a Premier Inn. Dylan can sometimes be overwhelmed by moon in the sky, wanting to only sneak a look, but it is a constant which he recognises. I have written, elsewhere, about the role that moon has played in Dylan’s life. In one poem, Moonstruck, I view the full moon he was born under as prefiguring (even causing) his silence. In subsequent poems, meanwhile, I have used the image of moon as dual symbol of detachment and belonging.

Last night, as we got out of the car in the care home car park, Dylan glanced upwards. ‘What is the moon?’ I chanted at him, ‘The moon is a place.’  Dylan looked quickly at me, waiting. ‘Why does it smile?’, I continued, ‘It looks like a face’.  I had Dylan’s attention now. ‘Sometimes thin, sometimes fat?’  ‘Yes’, Dylan said, anticipating my next word. ‘…the moon is like that’, I continued, nodding my head to praise Dylan for joining in.

51DG8X79YQLDylan knows these extracts from his book  What is the Sun? by heart. He listens attentively and joins in with single syllable words every so often, especially if I pause long enough between lines. The book (a dialogue between a grandmother and grandson) has captured Dylan’s imagination since he was very young; the combination of rhyme, meter, illustration and grandmother seem to cast a spell on him. This book is, I suspect, the real reason why Dylan is moonstruck.

After I had settled Dylan in his room last night I got down the book and read it to him. While I chanted the poem Dylan clutched his care worker excitedly, the words at times on the tip of his tongue and sometimes in his fingers flapping in air. He listened attentively to the whole book as if waiting for his cue on the last page as the grandmother declares: ‘I love you, goodnight’.

‘Goodnight’ Dylan echoed back, kissing my cheek.

‘Good listening’ the care worker told Dylan, ‘good talking, Dylan’.

I pulled back his bedroom curtain and pointed to moon outside and then at the picture of moon in his book. ‘See Dylan’, I said, ‘moon and you and someone who loves you, like in the book’. As I said this I remembered my mum saying ‘look at the moon and think about me, thinking of you’. I left Dylan and drove home under the yellow moon, hoping he was still looking.


Images of moon from Wikipedia and

Day 73: Remembrance And Forgetting

October 2012 007Today, for me, is about a daughter not my son. It’s the anniversary of the birth (and death) of a baby girl I named Hannah Joy thirty years ago today. I can hardly believe how grown she would have been had she lived – or rather how young I must have been (though I didn’t realise) when she was born.

The pregnancy was problematic and I had been in hospital for months. It was as if I was sealed in a glass ship, crossing an ocean to somewhere or other. From my ward window I watched the summer give way to autumn and tracked the falling light across white walls. I remember realising, from the clothes visitors wore, that temperatures outside the hospital must be dropping. My memory is of the birds gathering on the telegraph wires outside my window, preparing to leave.

I was well-supported in 1985. If the National Health Service is a postcode lottery then I was lucky to be a student, at the time, in a well-heeled part of England. I had superb care throughout the troubled pregnancy and afterwards, including genetic counselling when the post mortem revealed the extent of my baby’s disability. Hannah Joy had an extra set of chromosomes:  Triploidy XXX. Her condition was fundamentally incompatible with life; she could not have lived longer than she did. What was remarkable, the Registrar told me when he went through the file with me, was the length of time I had carried her. Even so, she was my baby; in my arms, she had been perfect. Afterwards, although I accepted she could not have lived, I found the grieving as hard as if she hadn’t had to die.

While I was pregnant I had been allocated a social worker (I assume because I was a student). I liked her but preferred one of her colleagues who I would see visiting other patients on the ward. He and I discovered a shared interest in poetry and fine art and so this other social worker (the one who wasn’t really mine) took to bringing me books. I looked forward to his visits; he had a knack of finding just the right poem and of knowing exactly what to say. Some of his sayings have stayed with me and one of them in particular. The process of grieving, he told me, is the reconciliation of the pain of remembrance and fear of forgetting. It hurts us to remember but, because we are scared we might forget, we keep bringing our loss to mind.

How had he known I was doing this I wondered? I was constantly trying to recall my baby’s face, how she had felt in my arms, the moment of her birth, as if trying to fix these things in my memory forever. But each time I did this, I seemed to open the wound of it again. With time, the social worker told me, it won’t hurt as much to remember and you will realise that you will never forget. The last time I saw him, on the day before I was discharged, he warned me that it was colder outside than when I was admitted; had I noticed, he asked, that the birds had left?

I thought about this wise man’s advice last week. My grown daughter – the one whose life I celebrate each day – had come home again. My evenings were different suddenly; they passed more quickly, chatting and cooking, sharing stories. One day, however, I realised with a panic that I hadn’t thought about Dylan. I had been so focused on my daughter, I had forgotten to call the care home for my daily update. I felt terrible. How could I have forgotten? What was I thinking? Then (although it is not the same I know) I remembered that advice from long ago; perhaps, I told myself, adjusting to Dylan’s absence is also the reconciliation of remembrance and forgetting.

Day 72: Challenging Master Narratives

S5000238Following yesterday’s seminar on narrative methods I’ve been reflecting on which ‘master narratives’ Dylan’s story might challenge. His story has raised questions about a range of issues in relation to autism  including, for example, early intervention, eye gaze and memory. These issues are, however, subjects of continuing debate in which no single narrative has taken precedence over others.

Assuming a ‘master narrative’ to be the dominant discourse about a topic or issue, i.e. the taken-for-granted assumptions or prevailing view, I would suggest that Dylan’s story presents the following key challenges:

  • The construction of the category ‘autism’ tends to obscure and exclude the needs of those autistic children and adults with a co-morbid condition (learning disability, for example).

One of the things I find frustrating is the tendency of autism-related issues to be represented and discussed from the perspective of children and adults who are verbal. Almost equally frustrating is the assumption that a non-verbal child with autism can be facilitated to communicate (through a keyboard for example).  It is very difficult for young people with intellectual impairment as well as autism to claim the discursive space in relation to autism.  The ‘Rainman Effect’ is still alive and well in that the master narrative is of someone who is verbal and/or cognitively able (albeit with a spiky profile).

  • For some people with an autism diagnosis, particularly where a learning disability is also involved, social constructs such as ‘independence’ and ‘competence’ may require re-conceptualisation.

These ideas have become so much a part of the master narrative that they have been incorporated into monitoring and review systems across a range of contexts including, for example, health and social care.  As I have argued previously, however, ‘independence’  may not be an appropriate goal for some young people. Furthermore, the concept itself is open to challenge; why should we assume that independence is inherently a ‘good thing’?

  • For some autistic adults, a residential setting may be an appropriate model of care.

Since the Winterbourne View scandal there has been a backlash against placing adults with disabilities in residential settings. The preferred model of health and social care is now community-based supported living in which bought-in care (from a personal budget) is provided to small groups of adults. While this is an appropriate framework for some people it is not suitable for everyone. Dylan’s story can be perceived as challenging this ‘master narrative’ through the construction of a competing narrative of residential homes as expert and caring places which can be well-managed and effectively run.

Day 71: Living In The Brackets

260px-Brackets_svgNow I no longer have to be at home for Dylan at the end of the working day I make a point of going to events which I wasn’t able to get to previously.  Recently I have been enjoying a series of seminars on theory and methodology and was particularly looking forward to tonight’s discussion of the use of narrative methods in research. The research discussed during the seminar included projects undertaken with prisoners, asylum seekers and young people who have a parent with dementia. There was some reporting of project data but because the primary concern was with methodological issues the main focus of the discussion was story as a ‘way of knowing’.

Although the event was not ‘about’ the topic I write about here, I found myself making links with Dylan. One researcher, for example, reminded us of the difference between ‘story’ and ‘narrative’; the personal material which prisoners had shared during interviews were ‘stories’ but the researcher’s re-telling of these stories turned them to ‘narrative’.  This blog also incorporates these different layers of text in that it reports Dylan’s story through my narrative lens. Given the orchestration of such narratives is in the hands of the researcher (or blogger) rather than the story-teller, ethical issues are raised by the subject’s lack of power or control.

I wondered, during the seminar, if we could increase the power of subjects by involving them in the construction of their own narrative; could creative writing techniques be used, for example, to help them re-frame their stories? This was something I had tried to do, I reflected, when working on a project with prisoners some years ago (albeit as a writer rather than researcher). It is, however, considerably more challenging to find ways of involving Dylan in the construction of his own narrative. Perhaps this is something which marks the learning disabled out from other vulnerable groups whose stories we need to hear; refugees and asylum seekers, for example, or elders.

Inevitably the seminar discussion turned to the therapeutic use of story. Despite the unequal distribution of power, the subject was felt to benefit from involvement in the research. The simple act of ‘being heard’, it was argued, was helpful to those whose stories might not otherwise be told; ‘being present’ was therefore as much a gift as ‘the sacred stories’ themselves. Again I tried to apply these ideas to Dylan. Does a blog enable me to be more present for Dylan? Or would I hear his story anyway?  Am I present for him differently because I challenge myself to narrate his tale?

This blog is, however, no longer Dylan’s story: the switch from Living With Autism to Living With(out) Autism marks a shift from writing about Dylan to writing about the impact of Dylan’s move to residential care on me. In this situation, I am both story-teller and narrator. There is still, however, a therapeutic quality to the story-telling: my 100 day framework for transition is a sort of ‘half way house’ from where I look forward and back. This is limbo land, a place in brackets; I am neither living with autism nor entirely without it. From this healing space I can hopefully learn to let go lightly. It is, perhaps, a therapeutic place in so far as a blog offers the story-teller the gift of ‘being heard’.

One of the presenters at tonight’s seminar suggested that stories are powerful because they can challenge ‘master narratives’.  Single stories, it was argued, can undermine a dominant discourse, unsettling traditional power structures and establishing new knowledge. The examples given included beliefs about teachers wrongly accused of sexual misconduct and beliefs about the experience of being parented by a mother or father with dementia. In both cases, it was suggested, we need to listen to individual stories in order to adjust our perception of the issue.  As I drove home from the seminar I asked myself which ‘master narratives’ about autism Dylan’s story might challenge and transform.

Day 70: Disney On Ice


more DOI 005Looking back I can hardly believe that I took Dylan to Disney on Ice last year. At the time, he was very unsettled; there were regular incidents in the home and day centre and Dylan was on 2:1 support in the community. Life with Dylan was unpredictable and could be challenging but, because nobody involved in his care could figure out what was underlying the behaviour, it was difficult to know how best to support him. Against this context, I am amazed I went alone with Dylan to the show.

Occasionally I do something like that: step out into the road instead of hugging the pavement, waiting for a cautious gap in the traffic. And it was a risk: Dylan likes Disney but he was not used to going to crowded events; wasn’t familiar with the venue (the Sheffield Arena); and didn’t have a good track record with ‘live’ shows. Although Dylan had coped with a couple of autism-friendly theatre performances previously, live events had mostly been unsuccessful. As well as not being comfortable with audience participation, Dylan doesn’t like to see his favourite Disney characters adopt unfamiliar narratives or appear other than the way they are represented in film.

more DOI 002There was plenty, then, for me to be anxious about when I took Dylan to Disney on Ice the first time. I was so focused on the need to manage Dylan, and to stay alert to any potential challenge, that it wasn’t until after the event I realised it had been a success. In his undemonstrative way, I thought to myself, Dylan had enjoyed himself. This was confirmed for me when, some months after the production, I found Dylan looking at the programme from the show. Since then he has frequently taken it down from his shelves; in particular, Dylan likes to look at a photo of Pinocchio leaping in the air, legs outstretched, hands touching his feet.


more DOI 004After the success of last year I decided to take Dylan to Disney on Ice again this year. When I collected him from his care home yesterday evening a member of staff said: ‘I bet you’re looking forward to it aren’t you?’ ‘Actually’, I replied, ‘it’s not really my cup of tea. I’m doing this for Dylan’.

I wasn’t entirely sure, however, whether Dylan understood the plan; he had ‘Disney on Ice’ on his schedule but as we turned off the motorway at the ‘wrong’ exit (i.e. not the one for home) I heard him moan softly in the back of the car as if disappointed. But once we arrived it became clear that Dylan knew exactly what was afoot (or askate) as he led me confidently up a staircase to enter by the same door as last year, re-tracing our footsteps exactly.

This time, however, I had bought seats in the bay reserved for disabled spectators. One of the things that had been challenging for Dylan last year was the lack of personal space around the seats in the Arena; in the middle of a row, Dylan had appeared to feel hemmed in and uncomfortable. Dylan is noise-sensitive and finds small children difficult; while noise and children are inevitable at such a show, it is their proximity which can be particularly distressing for Dylan and the disabled bay had appeared, from the floor plan, to offer a potential solution. Although I don’t often claim ‘disabled’ space for Dylan, on this occasion I think it helped enormously.

Initially reluctant to sit on a regular chair (rather than in a fixed stadium seat) in an area which wasn’t clearly demarcated, once Dylan accepted the space it gave him lots of freedom. He could, for example, bounce up and down on his chair without interfering with the enjoyment of that of anyone else. Dylan’s bouncing is often so extreme it needs regulating in public space (and sometimes in the home). I have never been completely sure why Dylan bounces but last night, because I didn’t feel it necessary to discourage, I was able to observe more freely. Dylan’s bouncing at Disney on Ice, I decided, was definitely joyous (even though this year there was no Pinocchio).

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For me, however, the best thing last night – and I don’t think I have ever seen this before – is that Dylan applauded appropriately after each scene. At first I thought he was simply copying me but at some point in the show I noticed he was clapping before me and, once or twice, without me. Another great breakthrough for Dylan was that twice he turned to me and said ‘laughing’, tracing a circle in the air around his face with his finger. It was, I assumed, Dylan’s way of telling me he was having a good time.

Disney on Ice 009Dylan was also at his mischevious best last night. Towards the end of the show (how long was he planning this?) he made a dash for it, sprinting at top speed down the staircase next to his chair. It took me a moment to gather my wits; Dylan was already half way down the aisle and heading for the ice. I had visions of him vaulting the rink-side and slithering towards Elsa and Anna, watched by thousands. I tore after Dylan (abandoning my valuables in a vulnerable gangway) who, seeing me in pursuit, changed course and headed back up the stairs and into the arms of a watching steward.  ‘Gosh he was quick’, she said, smiling. She had taken a photo of us before the show and, I think, had enjoyed watching Dylan: he was exuding such delight I’m not surprised. ‘Disney on Ice not my cup of tea’?  I’ve changed my mind.


Day 69: Dylan On Ice

WP_20151121_08_30_47_ProAfter yesterday, when Dylan went out without a coat, I woke this morning to a covering of snow.  My first thought, when I looked out of the window, was of Dylan hugging his hoodie sleeves over his hands in one of the photos from yesterday’s trip. My second thought, as a gritter truck thrummed by outside my house, orange lights flashing, was of the roads.

Dylan already has ice on his schedule today; following last year’s successful trip to Disney On Ice we have two tickets for tonight’s show. How would I manage this, I wondered, on snowy roads? The rural setting of Dylan’s home might be enchanting in the summer but, it suddenly occurred to me, it could be a challenge in winter. I’m not sure why I haven’t thought this through before. The road from the motorway exit to the care home is twisty and unlit. It dips and climbs to places I know the frost and ice will cling. It’s the sort of journey on which you lose your mobile phone reception. Not the most confident driver at the best of times, these conditions are my nightmare.

Why have I never envisaged the residential setting in bad weather I wonder? I will surely not be able to maintain my mid-week visit to Dylan on winter evenings. And what about the days of sudden snow – if it falls on a Saturday when I am due to collect Dylan, say? Or during the weekend, while Dylan is here with me, so that we can’t make the return journey? The home is not on a public transport route; if I don’t feel confident enough to drive, I will have to let Dylan down. The idea of my not arriving when Dylan is expecting me ranks as high on my discomfort scale as him being without a coat in winter (higher perhaps). If I replay the memory reels from all my Februaries I could consider the situation bleak: if snow falls badly, I might not see Dylan for weeks.

I will have to ask the manager what the roads around the care home are like in winter and talk to other parents about how they manage this. But then fresh worries form (worries I know are not strictly mine). How do staff get to the care home in winter? What happens if they can’t get through and the home is short-staffed? And what about the risk to Dylan of trips on icy roads? Such thoughts are not helpful I know; I have to hand over responsibility for these decisions. On the positive side, I tell myself, Dylan will have a great time this winter if care home staff have more confidence than I do in the snow; Dylan loves to skate and sledge and  will probably be in his element (providing he is properly dressed).


Day 68: Context

IMG_4018Everything that can be said about autism can also not be said: as the maxim goes, when you’ve met one person with autism, you’ve met one person with autism. Dylan certainly contradicts a few stereotypes: he appears to empathise with others; he can be sociable; and he enjoys variety. Sometimes, however, Dylan follows the text book.

I’ve had to reach for the autism manual more than once while Dylan has been transitioning to residential care. Today, for example, I received a photo of Dylan enjoying himself on a trip. As I’ve mentioned previously, I love receiving these: photos reassure me that Dylan is happy and help me to feel involved in his life. I smiled as I opened the email:  just the sort of outing Dylan loves, I thought to myself.  I closed the email and continued working.

After a while, however, I started to feel unsettled. I wasn’t sure what it was but something about Dylan hadn’t seemed quite right. I opened the email again and clicked on the photos. What was it? As I enlarged one of the images I realised:  Dylan wasn’t wearing a coat. Although it is November, and the air temperature is plummeting with the forecast of first snow, Dylan was dressed only in a hoodie. I am aware that one of the issues I tend to fuss about is Dylan’s clothes so I’m trying not to over-react to inconsequential differences in practice. The thought of Dylan not being warm enough, however, triggered my maternal concern.

Dylan, I was told in answer to my query, had had a coat with him but didn’t want to wear it. I remembered that Dylan hadn’t had a coat on either when I collected him on Wednesday evening; I’d decided that it didn’t matter as we wouldn’t be outdoors, but I noticed it. Then I recalled that at the weekend when I collected Dylan he had had two coats on, one on top of the other. There seemed to be a coat problem developing. But it surely couldn’t, I reflected, be about the coats: Dylan has a choice of three, all of which he has always seemed happy enough to wear. The other really strange thing, I thought to myself, is that I have the opposite problem with Dylan: when he is with me he is reluctant to go out without a coat.

‘Er-jay, er-jay’ (meaning t-shirt) Dylan says to me, pulling at my clothes, when I go outside without a coat in the summer. I am constantly reassuring Dylan that it is alright to go out without a coat when it is sunny. Sometimes when we have gone out without coats Dylan has become so anxious that we have had to return for them.  And it is very difficult to persuade Dylan to take his coat off while travelling in the car; when I manage to, he leaps out as soon as we arrive and gets his coat out of the car boot.

The fact that Dylan has always been particular about coat-wearing might suggest that it is a particular habit, i.e. that it is context-dependent. Perhaps Dylan will have to learn about wearing a coat in his residential setting just as he had to learn about wearing a coat at home?  This would be one way of making sense of Dylan’s refusal to wear a coat. Certainly it would fit the text book explanations: it can be difficult, apparently, for children and adults with autism to generalise a behaviour from one context to another. I have sometimes considered this lack of generalisation an opportunity;  relearning something in a new context offers me a chance to alter a routine or to develop Dylan’s practice in some way.  The positive aspect of this, I suppose, might be that Dylan re-learns the habit of wearing a coat but that he assumes it less rigidly than before.