Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

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Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

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References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury

Learning By Writing: reflections on blogging (i)

booksIt’s two years – virtually to the day – since I made my first blog post. I had no idea what I was doing that day: I simply typed into my barely-developed WordPress site and hit publish. The piece was different to my subsequent posts in that I didn’t write it offline, there were no drafts, I didn’t include images and it was relatively short. It was also different in terms of ‘voice’: more meditative and detached. Nonetheless, it has consistently been near the top of my blog post leader board and currently stands as my 6th most popular post (out of 82). This is not due just to longevity; there is no direct relationship between the number of views a post has received and when it was posted. My advice to anyone reading this who is hesitating about making that first post? Just do it!

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The focus and style of my first post puzzle me as my reason for setting up the blog had been more campaigning than musing. It was my frustration at the lack of provision for autistic adults with severe learning disabilities in my area that led to Living with Autism. My son had left his autism-specialist school that summer but had not been allocated any continuing provision. I was concerned about Dylan, who needed the structure and routine of a specialist environment, but was also anxious about how I was going to return to work. When a legal action against my local authority uncovered failures and omissions in Dylan’s care, my instinct was to share what I had discovered. My blog would be worthwhile, I told myself, if it helped other parents to get information I had not had access to.

If someone had told me, when I made that first post, that it would be two years before Dylan was allocated an appropriate placement I would have said I could not manage. And if I had known that I would have to learn how to support Dylan through some difficult ‘challenging behaviour’ I would have doubted my capacity to cope. If it had been explained to me, then, that in order to keep Dylan at home through these darkest of days I would have to make radical changes to my working life, I would have hesitated. And if I had been aware that surviving these years would come at high cost (to my poetry, my relationships and my health) I would have wondered whether I had the resources.

Perhaps it’s just as well we don’t know how the road ahead looks and what it will require of us. Most parents, when facing a challenging situation, give what is needed – and sometimes it is through such challenge that we discover just how deep our resources are and how much we are able to give. But I don’t think that we find this in ourselves alone; most of us also draw strength from some external force. For many of us, this is friends and family. For some, it is faith. For others, work or an interest or hobby. All of these have been important to me. I want to use this post, however, to reflect on the positive contribution of something I did not anticipate: blogging.

Learning through writing

batdetectorFor me, the most interesting writing is transforming; if I don’t come out of the process seeing the world differently, I’m not really interested in finishing it. This is true of any piece of writing, whether it is a poem, a short story or an academic article –  so perhaps I shouldn’t be so surprised that writing posts for this blog turned out to be a vehicle for learning and development.

If I want to be changed by what I write, I cannot be too in control of it. While I always have a defined topic in mind, and some key points or examples I want to communicate or explore, I try to leave enough space for a piece to breathe by itself once it has lungs. It can feel very scary when a piece heads off down a branch line, but I know that these diversions can lead to unexpected blessings as well as to dead ends. So I never plan a piece of writing (a poem or article or blog post) in too much detail or to the end because I don’t know, until I’ve written it, what I know. This might sound strange to people who don’t connect writing with thinking but for me the two processes seem to be inseparable; I simply don’t understand something until I’ve written about it.

I think for me this is to do with being a visual learner. I need to see how things connect with each other so I love moving sections of text around in a piece of writing to see if I can find new and surprising links. The connections between sections are important to me; I think this is about finding the progression and coherence in ideas. Perhaps my main preoccupation, however, is pattern and paradox; a concern with things that are similar and things that are different seems to underpin most of my writing. I suspect that it is through this re-organisation of material that (if I’m lucky) I happen across new connections and alternative ways of knowing.

So, at its best, writing blog posts has been a process of discovery; some of the pieces I have written have genuinely changed the way I think. This has particularly been the case for posts which focus on knotty abstract concepts, such as ‘independence’ or ‘voice’, and for sensitive topics, such as suicide and ‘challenging behaviour’ , but has also been so for posts with a more applied focus. Writing about the early interventions I made with Dylan when he was first diagnosed, for example, enabled me to understand the meaning and significance of the ‘treatments’ in a way I doubt I would have grasped had I not explored them through writing.

Writing is increasingly used therapeutically with professionals, particularly in health and allied sectors, and for several years now I have used it myself with staff and students in education in order to explore issues in personal and professional development. Keeping this blog has reminded me of the power of writing as a tool for exploring and transforming our knowledge, understanding and beliefs. Perhaps there should be more opportunities for parents and professionals to explore their experiences of autism through writing in structured and supported settings?

Making space

The other way in which keeping a blog has been helpful is in the space it creates for thinking and reflection. It’s a bit like having time in the therapist’s chair; setting myself a target of one post a week encouraged me to prioritise and make room for this. I would choose a topic from the scribbled list on my desk and spend half the week thinking about it (in whatever space I was in) before making the space to sit down and see where it would lead. Sometimes the posts would be written swiftly but if it were a thorny topic, or I found myself up a branch line, it could take longer than planned. Occasionally something I hadn’t expected came bowling in, elbowing its way to the top of the list, and sometimes (by contrast) the magic didn’t happen: there was no flash of pattern or paradox.

One thing I resolved when I started the blog was that I wouldn’t keep it at Dylan’s expense; on the ethics page of this site I identify a range of ways in which it could enrich Dylan’s life and a protocol to protect him from harm. One issue I don’t refer to on the ethics page, however, is the practical challenge of making space. When I set the blog up I told myself that it would be daft to be tapping away at a keyboard, writing about caring for Dylan, instead of actually caring for him. I had to find a space to blog which took nothing away from the time I spent with Dylan. How, as a single parent with a full time job, did I manage this? The short answer is that I sacrificed my diary and my poems.

The early morning hour before Dylan wakes, which I had previously used for writing, became ‘blog time’. Consequently, I haven’t done much with the manuscript of poems I was working on when I started this blog. In fact I have been so little involved in the world of my poems that it has been hard to think of myself as a poet at all some days. This would make me sad except that a) I’m not scared of fallow periods b) I have continued to edit poems that were already written c) the poems worth writing will still get written (albeit differently) and d) even if I never write another poem it was worth it.

The other sacrifice I made was to reduce the amount of time I spent writing a journal; a daily diarist from the age of 14, in the last two years I have allowed myself only one entry a week. Could I not have made the discoveries I refer to above through the process of writing in a journal? I doubt it. In fact I suspect that I have rarely discovered something new through a journal entry . I think this might be because I don’t pay the same attention to structure and organisation in a diary; as it’s handwritten, text does not get moved around and re-organised. I am therefore less likely to unearth pattern and paradox. I am also less concerned with logic and evidence in a diary entry and am far more indulgent and much less rigorous. Perhaps it is the one form of writing where I don’t expect transformation?

Being Provisional

dartofgreenAs I begin to think about writing poetry again I ask myself if blogging will have spoiled my poems the way squash once ruined my tennis (or so I claimed in the summer of 1986). What, I wonder, is the impact of one form on another? I am convinced that we take it into our deep subconscious; I know by instinct, for example, when I have written a sonnet-length piece.

When I started blogging I realised my posts were longer than most. I also realised, however, that I was incapable of writing to the more usual length of 1000 words and I have to work to limit myself to 2000; my natural ‘prose breath’ is, I suspect, closer to 4000 words. One thing I have enjoyed about the form, however, is its provisional nature. The WordPress facilities allow me to go on editing a piece even after it has been published; for me (for whom nothing is ever finished and everything can only ever be provisional) this is a marvellous format. I am an inveterate drafter and editor of my own work. Blogging allows me to go on polishing and I love it for this.

I have a reservation about this post-publication editing facility, however. If someone has ‘liked’ my post and I then edit it, how do I know they would still approve? I comfort myself (and, I hope, you) by limiting my edits to style not substance. If I change my mind about something as a result of comments from readers then I add a postscript or correct myself through the comment trail or in a subsequent post. Reader interaction with a blog is of course a central feature of the medium, particularly in relation to the capacity for learning and change. In the early days of my blog, when I had posted only a handful of pieces, a colleague suggested that my voice sounded ‘careful’. I replied that I checked my claims, of course, and was careful to make clear that my observations were based only on a single story. I realised later, however, that she hadn’t used ‘careful’ in the sense of ‘rigorous’; my colleague had meant I was holding back. Perhaps as well as being excited by the idea of a conversation with an international audience, I was nervous about the interactive format? My next post will reflect on this and on what I have learned through dialogue.

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.

Programme
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.

Reference:

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

The Little Mute Boy: autism in translation

In a previous  post I reflected on the way we keep some poems as talismans, pinned to walls and notice boards. This week I found a charm poem taped into one of my old notebooks.

The Little Mute Boy

The little boy was looking for his voice.             
(The king of the crickets had it.)                     
In a drop of water                                                   
the little boy was looking for his voice.

I do not want it for speaking with;                             
I will make a ring of it                                                    
so that he may wear my silence                            
on his little finger

In a drop of water                                                          
the little boy was looking for his voice.

(The captive voice, far away,                                          
put on a cricket’s clothes.)

The poem is by Federico García Lorca, a writer who has been important to me in recent years. I didn’t always care for poetry in translation; sound is as integral to a poem as meaning and I wanted poetry in its first language. But then, four years ago, a Lorca translation saved me.

 Córdoba             

I was in deep grief; not over Dylan, this time, but my daughter from whom I had been suddenly separated. One of the ways in which it affected me was that I found myself unable to write. I had written poetry all my life; hard times had not previously silenced me. ‘The blood jet’, as Sylvia Plath wrote: ‘ is poetry/there is no stopping it.’ And yet suddenly I couldn’t make a sound. Nothing made sense to me. I was inhabiting a world of confusion and doubt; finding the words from or about the place seemed impossible.

A poet friend, gently concerned, gave me a copy of Robert Lowell’s Imitations for Christmas that year. I might find reading poetry in translation helpful, he suggested, as it would engage my heart and mind differently. Soon after, he called round again, this time with a Lorca poem in the original and translation. My friend was taking a Master’s course in poetry and one of the exercises he had been set was to produce a version of the piece. Why didn’t I have a go too? If I could experience the poem without thinking too much about what it communicated then I might find I could catch its rhythm; perhaps the spirit of the language could restore me to sound.

 Canción del Jinete  /  Song of the Horseman

Córdoba  /  Córdoba
Lejana y sola.  /  Far off and solitary.

 Jaca negra, luna grande,  /  A black horse, a round moon
y aceitunas en mi alforja.  /  and olives in my pack.
Aunque sepa los caminos, /  Although I know the roads
yo nunca llegaré a Córdoba.  /  I will never get to Córdoba.

 Por el llano, por el viento,  /  Across the plain, into the wind,
jaca negra, luna roja.  / a black horse, a red moon.
La muerte me está mirando  /  Death is staring at me
desde las torres de Córdoba.  /  from the towers of Córdoba.

 ¡Ay que camino tan largo!  /  Oh what a long road!
¡Ay mi jaca valerosa!  /  Oh, my brave horse!
¡Ay que la muerte me espera,  /  Oh, death is waiting for me,
antes de llegar a Córdoba!  /  before getting to Córdoba!

Córdoba.  /  Córdoba.
Lejana y sola.  /  Far off and solitary.

That Christmas I read Lorca’s Horseman. Its melancholic rhythms and pace appealed but it was the moon which caught me. I remembered my Grandmother telling me to look up at the moon when I was away from home and remember she’d be looking too. I knew my daughter had, in turn, heard this from her Grandmother. Perhaps this moon, passed down the spindle side, was my song.

fall (my gone daughter)

dearest beloved 
grain moon     our same moon

my nut-eyed little bear (mater dolorosa)
a cotton square soaked in scent
the grainy aerial view
of woods where you’ll grow

if I’m sorrowful and red-eyed
my little bear has been sharp-clawed
torn us from the black earth
faces appear in the night     (and dissolve)

I stand aside
fruit moon     little blood-eyed bear
loss is hiding in your fur
fastening ribbons in our hair

falling leaf moon       our same moon
dearest beloved

*Grain (August), Fruit (September) and Falling Leaves (October) were Anglo Saxon names for the moon.

My version of the Lorca poem wandered so far from the original that I didn’t feel the need to provide an epigraph ‘After Lorca’. I can feel the DNA of the poem, though, in its structure (2, 4, 4, 4, 2), imagery and voice. And so Lorca saved me: the poem was my breakthrough back to sound. Later, fall (my gone daughter) would win a prize in the Ilkley Poetry Competition. By then my daughter had returned; one of my happiest memories is of her being in the audience for the prize-giving.

The cricket

diaries 001And because Lorca had saved me, my prejudice against translation faded. So when I encountered The Little Mute Boy one day I paid attention. The English version, translated by the American poet WS Merwin, delivered an instant strike to my heart. I was, as with De La Mare’s Sea Boy, transported into Dylan’s world.

What is it about the poem which works such magic on me? Mostly I think it is the way it makes me re-think the meaning of ‘voice’. Here, the voice becomes something which is concrete rather than an abstract concept. I like this transformation of sound into object; rather than feel frustrated by Dylan’s silence I can visualise it as a ring on his finger.

But such things can be lost, given away, stolen or bartered with. The idea of bartering with a voice reminds me of Ariel in The Little Mermaid who trades her voice for legs. In Lorca’s poem, however, a voice can be desired not in order to be used (‘for speaking with’) but simply to be worn as adornment or to be magically transformed into something else (a cricket for example). Not only does the ‘captive voice’ in the poem ‘put on cricket’s clothes’, it becomes king of the crickets. Crickets, of course, are famed for their night song; the stolen voice thus becomes more beautiful and magical than in the throat of a human. Because Dylan is so utterly absorbed by Pinocchio, the cricket in the poem also puts me in mind of Jiminy Cricket, the puppet boy’s conscience. The Lorca poem offers such comforts: from Dylan’s silence I can make crickets sing and golden rings.

El Niño Mudo

El niño busca su voz.
(La tenía el rey de los grillos.)
En una gota de agua
buscaba su voz el niño.

No la quiero para hablar;
me haré con ella un anillo
que llevará mi silencio
en su dedo pequeñito.

En una gota de agua
buscaba su voz el niño.

(La voz cautiva, a lo lejos,
se ponía un traje de grillo.)

 The sky is,

Once I’d appreciated translation it opened up new vistas especially as my daughter (with whom contact was re-established) had developed a passion for languages. The paradox of my children was not lost on me; one who didn’t speak and the other fluent in three languages. That summer I sent my daughter poems by Jacques Prévert, Pablo Neruda and Paul Verlaine. One weekend I received a rare phone call from my ex-husband, the tension in his voice palpable. Our daughter would not be able to catch the train that day to visit as planned; she had to stay and put something right. She had, it transpired, taken paint from her father’s shed and decorated a road. The road in question may be narrow and surrounded by lochs and mountains but it leads to somewhere not nowhere; in fact it is the only way into the community where my daughter was living. Everyone in the village had to travel that road, sometimes twice or more a day. The Verlaine poem (in pink) was not something you could ignore.

IMG_1477Le Ciel Est, Par-dessus le Toit

Le ciel est, par-dessus le toit,                                   
Si bleu, si calme!                                                     
Un arbre, par-dessus le toit,                                     
Berce sa palme.

 La cloche, dans le ciel qu’on voit,
Doucement tinte.
Un oiseau sur l’arbre qu’on voit
Chante sa plainte.

 Mon Dieu, mon Dieu, la vie est là,
Simple et tranquille.
Cette paisible rumeur-là
Vient de la ville.

-Qu’as-tu fait, ô toi que voilà
Pleurant sans cesse,
Dis, qu’as-tu fait, toi que voilà,
De ta jeunesse?

IMG_1484Later, I would discuss the difference between public art and graffiti with my daughter; her lettering was impeccable and the poem beautiful, but what gave her the authority to decide what should be written on a public highway? What if someone painted an offensive poem on the road – about autistic people for example? Painting the poem, my daughter countered, was the most powerful act of community she had engaged in. As a result, she had got to know neighbours and people she had not previously spoken to. Out of her act came friendships and respect. No one in the village had expressed anything but support for her. Even so, her father was concerned that he would be liable for street cleaning if anyone complained; it was, technically, defacement of public property. So my daughter wasn’t able to take the train that day because she had to paint it out with bitumen.

 On the road

IMG_1560When my daughter painted the poem in the road I’d asked her whether she planned to leaflet the community with a translation: mais non, she’d replied. Soon after, my daughter returned to live with us. Sometimes I’d catch her muttering at me in words I didn’t understand: speak English please, I’d say. Perhaps my children weren’t such a paradox after all; I needed as much skill to translate my daughter’s speech as Dylan’s silence.

If poems are powerful because they help us see the world with fresh eyes, poetry in translation makes us look twice; it can take a second language, sometimes, to understand a mother tongue. Le Ciel Est, Par-dessus le Toit is a talisman for my daughter as The Little Mute Boy and The Sea Boy are for me. The influence of these poems endures: on a Scottish road, I’m told, pink paint is showing through bitumen. I like to think that, nearby, the king of the crickets is singing.

IMG_1513The Sky is, Above the Roof

The sky is, above the roof,
So beautiful, so calm!
A tree, above the roof,
Lulls its palm.

The bell, in the sky, that one sees,
Gently rings.
A bird on the tree that one sees,
Sings his complaint.

My God, my God, life is there,
Simple and quiet.
This calm rumour
Comes from the town.

What have you done, O you there
Crying continually,
Say, what have you done, you there,
With your youth?

References

Road art, and photographs of the road art, are by my daughter.

IMG_1505

Ways Of Drowning: water, autism, the sea etc.

caul 006For I was born the sea’s eternal thrall 
~ Sea Longing, Sara Teasdale

A small bottle of almond oil caught my eye in the Asian foods section of the supermarket last week. I lingered over it, pulled by two memories. The first was of a boyfriend’s sister telling me that she soaked her hair in almond oil overnight. The second was of a midwife at the hospital where Dylan was born asking my mum to bring almond oil with her next time she visited.

Shops did not routinely stock nut oils in the early 90s so I was impressed when mum turned up with a bottle the next day. The midwife showed us how to massage the baby with the oil. He had been born with skin flaking like tissue paper from his body. It was sometimes a sign of post-maturity, the midwife said. Was he an overdue baby? But Dylan had appeared more or less on cue, his birth only slightly delayed as if (I reflected later) to coincide with a high tide and full moon. His skin was a mystery. Mum and I rubbed the oil into the tiny soles of his feet and the palms of his hands with our finger tips. It’s nice for baby to be massaged, a passing midwife commented: he’ll like that.

The Caul

Brittany 13 082When Dylan was diagnosed autistic, one of the things I fastened on in my search for cause was his difficult birth. I have written elsewhere about my long labour and the way Dylan’s head was born but then withdrew. Later I would read in African folk lore that magical spirits can obstruct a birth. I would also recall that it is magical, in English folk lore, for a baby to be born in its caul. My brother’s had been intact at birth and Dylan’s might have been  had a midwife not broken my waters. My poem Ways of Drowning opens with these births.

It had felt like an ordinary birth
(my mother’s third) until she heard
the midwife’s urgent voice: Forceps quick
her astonished words: This one will never drown
at sea – he’s one in a million, love, born in a shroud.

My brother does not swim in freshwater,
cannot relax in the bath.
*
caul 003My waters would not break: I laboured three days

with membranes intact until a siren midwife stuck
a sort of crochet hook up my vagina – wriggled it around
between the ebbing contract of my womb – tore the sac.
The head bore suddenly down on me: flaking and wrinkled
in sloughing skin, he beached reluctantly to spend his life
in search of underwater – wait for me to falter, let him slip.

The first stanza of my poem ponders a darker side to the caul’s charm; as the protection is specifically against drowning at sea, I imagine my brother reluctant to enter water where he isn’t protected (a lake, say, or bath). A suggestion implicit in the second stanza is that by breaking my son’s caul, I not only destroyed the protection he might have had, but made him vulnerable: my baby’s arrival with flaking feet signalled an affinity for water, his desire to be under it.

The naming

caul 002I will go back to the great sweet mother,
Mother and lover of men, the sea.    

~ The Return, Algernon Charles Swinburne

Only after I had named my baby did I realise that I’d called him for the sea. I had intended it as an homage to Dylan Thomas and Bob Dylan, not the waves. Still, as Dylan had been born in a seaside town it felt appropriate; I’d held him to the high window so the first thing he saw, after me, was the sea. The serendipity of Dylan’s name soon became apparent. Before I noticed the symptoms of autism I’d puzzled at the pull of water; not only was Dylan soothed by it, he could sense its presence. I describe this in my poem Into The Blue.

He is a diviner:
his body shakes at the prospect
as he veers swiftly from my side, flapping and trembling

to silent springs bubbling from underground.
He has led me to still fountains, hidden wells and troughs;
searches through his picture books for lakes and lochs.

The poem goes on to describe my urge, in sea, to ‘loose my grip, let him go’ believing that he ‘would skim easily/across the water’. I use the image of a butterfly to suggest transformation; in imagining such a re-birthing, I make the sea more of a mother to Dylan than me.

Merman

Brittany 13 164And all the mermen under the sea
Would feel their immortality
Die in their hearts for the love of me. 
~ The Mermaid, Alfred, Lord Tennyson

It wasn’t only Dylan’s first name that turned out to be appropriate; years later, on hearing Dylan’s full name, a child would ask why I had called him after a girl. But I haven’t, I replied, confused. Ariel, the child told me, was the name of the little mermaid: she was a girl. I had intended Dylan’s middle name to refer to Shakespeare’s The Tempest and to Sylvia Plath, not a Disney film.

For years I fielded questions wearily. No, Dylan’s name was not because of The Little Mermaid: I had never seen the film and knew nothing about it. And actually (by the way) Ariel was a male name. But then out of the blue, on the run-up to Dylan’s 20th birthday, he developed an interest in The Little Mermaid. A year later, Ariel the mermaid is Dylan’s heart’s delight.

Kent August 2012 002I have written elsewhere about the impact of film on Dylan. While Disney has been the trigger for some positive learning, Dylan’s love of Disney also has its challenges. Given his passion for the sea, for example, Dylan likes to copy the underwater sequences. I can understand why he would do this; the action tends to be exciting and lead to narrative transformation. Unfortunately, however, Dylan’s attempt to copy the underwater antics of his favourite characters is potentially disastrous.

As a non-swimmer Dylan is at high risk in water. Lacking awareness of its dangers, he has been known to leap into pools and wade out to sea. Dylan would, I am convinced, simply keep walking into the ocean. I have had to yank him up from the bottom of the bath and from swimming pools repeatedly. After an incident when Dylan had to be rescued from the deep end of a pool where he had leapt, fully-clothed, after a lesson, staff at Dylan’s school decided they were no longer able to take him swimming. Supervising Dylan at the edge of water – beaches, harbours, river banks – makes me nervous.

That torn caul could not possibly be the cause of Dylan’s vulnerability in water. Still, I think about it sometimes. It’s strange that I prefigured the way Dylan would ‘spend his life/in search of underwater’ in a poem written years before. This, of course, makes me even more nervous.

Elemental

DSCF1291I am too long away from water.
I have a need of water near. 
~ Exiled, Edna St. Vincent Millay

Years ago a Medium told me I should always live by water. The simplicity of it appeals; that I am the best I can be by water. There is some truth in it I think. I have always been a swimmer. Walking by water soothes me. I am in awe of the sea. Perhaps that is what distinguishes my simple love of the sea from Dylan’s more elemental need. Dylan isn’t in awe of the sea: he wades in as if it is home.

The Sea Boy

Brittany 13 006I am the sea, I am the sea!
~Mana of the Sea, D.H. Lawrence

It is the sense of exile strikes me; being away from the sea is represented, in literature, as estrangement from self. This idea is in The Little Mermaid as well as the great sea poems like Coleridge’s Ancient Mariner and Masefield’s Sea-Fever. Could Dylan’s identity as a human being – his sense of self – depend on his relationship with the sea not people?

‘One of poetry’s jobs’, Ruth Padel writes, ‘is to transform real life imaginatively so we understand our lives more pointedly, more fully.’ (Padel, p.18). It is in the close observation of a poem that we feel the thrill of the familiar made strange and the strange, familiar. Poetry helps us to recognise ourselves but with fresh eyes; such recasting of experience changes the way we think and feel about our lives.

Some of the poems which influence us this way, Neil Astley notes, are encountered by accident: ‘That short poem we stared at, read and re-read, on the underground or subway train. Or the one photocopied by a friend, now a personal talisman pinned to the kitchen noticeboard or kept in a wallet’ (Astley, p. 19). Last week I re-encountered a poem which, years ago, I pinned to a noticeboard.

material literacy 004The Sea Boy

Peter went — and nobody there —
Down by the sandy sea,
And he danced a jig, while the moon shone big,
All in his lone danced he;
And the surf splashed over his tippeting toes,
And he sang his riddle-cum-ree,
With hair a-dangling,
Moon a-spangling
The bubbles and froth of the sea.
He danced him to, and he danced him fro,
And he twirled himself about,
And now the starry waves tossed in,
And now the waves washed out;
Bare as an acorn, bare as a nut,
Nose and toes and knee,
Peter the sea-boy danced and pranced,
And sang his riddle-cum-ree.

Walter De La Mare

It isn’t one of De La Mare’s more renowned pieces and reading it today there are things about it I don’t care for. But at a time when I was struggling to come to terms with Dylan’s diagnosis the poem helped me. What it did was offer me an affirming mirror; the boy in the poem, I realised, was like Dylan. Was he autistic? I remember asking myself. I wasn’t sure I’d encountered such a representation of autism in literature before.

I kept the poem on my noticeboard for years. I found Peter both strange and familiar; while I recognised Dylan in him, it made me rethink what I knew. Peter and Dylan, I realised, were sea boys; they had an essential connection to the sea. For me, I think, this was part of the process of seeing Dylan for who he was instead of who I’d expected him to be.

References:

Neil Astley [Ed] (2002) Staying Alive: real poems for unreal times. Bloodaxe
Elizabeth Barrett (1998) ‘Into The Blue’ in Walking On Tiptoe. Staple First Editions
Elizabeth Barrett (2005) ‘Ways of Drowning’ in The Bat Detector. Wrecking Ball Press
Ruth Padel (2002) 52 Ways of Looking At A Poem. Vintage

Images:

Except for the pictures of me with Dylan (which were taken by my ex), the photographs were taken by me  in Brittany, Pembrokeshire, Saltburn, Norfolk, Kent and the English Channel between 1996 and 2013.

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The Best Words In Their Best Order: language and autism

Living with an adult who doesn’t use speech to communicate means that I spend a lot of time thinking about language. People often remark on the irony of a poet having a ‘non-verbal’ son but I have come to realise there are more connections between Dylan and myself than differences, not least in our approach to language. How can that be when words are a writer’s currency and Dylan has so few?

The Language Barrier

NPG 192; Samuel Taylor Coleridge by Peter Vandyke

Samuel Taylor Coleridge

Poets, it seems to me, are as interested in the way that words fail as in the way they work. When poets write it is from a place of agony. Language is inadequate. We make faltering choices and wrong turns. We cannot find the exact description for the light outside a window. We fail to find a way of distinguishing one feeling from another. Constantly we delete, discard, begin again. Our quest is for the ‘best words in their best order’ (Coleridge, 1827). No word should be wanted or wasted. We will work a piece over and over to find the ‘truth and beauty’ (Keats, 1820). Even then, some poets consider their entire oeuvre to be no more than work in progress. This difficult search for the right word is a process which my son also knows.

NPG 58; John Keats by Joseph Severn

John Keats

Poets vary in the time they spend writing but I cannot engage in it for more than a few hours. I find the experience mentally and physically exhausting. If I think about the agony of writing it helps me to understand why Dylan may choose silence. Consider how it might feel if communication were like this all the time. What if it is so difficult for Dylan to find the right words that ordering breakfast is as challenging as writing a poem? Or if he experiences the world in so many colours the words to differentiate between them don’t exist? If Dylan can hear sound above and below 20KHZ, how might he begin to utter a word? If his senses are flooded with stimuli, as some autistic people report, then is Dylan’s silence so surprising? It can be safer, sometimes, to say nothing at all (a state poets refer to as writer’s block). Language is only a representation of the world; words are at least one step removed from the phenomena they describe. As I have argued elsewhere, Dylan may experience the world more intensely and essentially than those of us who live behind the language barrier.

Three Writer’s Maxims

New Year's Day 2013 013Dylan does, however, need some strategies for communication and much of my time is spent trying to help Dylan to develop these. At the moment Dylan’s favoured methods are visual. Photographs approximate the thing that they represent most closely and communication can be reliable this way. I might use this photograph, for example, to explain a trip to The Old Horns. However, the specificity of the photograph also limits its usefulness. I couldn’t use the same photo to communicate that at some point today we’ll stop for a pint somewhere because ‘somewhere’ is general and can’t be photographed.

This reference to the general and the specific reminds me of three writers’ maxims, commonly used in creative writing workshops:.

  • The concrete not the abstract
  • The particular not the general
  • Show don’t tell

20130714_164902I know writers who get quite agitated about these maxims, arguing that poetry cannot be reduced to rules. I am aware that there are plenty of fine poems which break these rules. Subversive practice is, I know, often at the heart of the startlingly original. However as a starting point for writing poetry the maxims are not a bad framework to inform our choices about language.

I would, for example, urge a beginning writer not to use abstract nouns such as poverty or anxiety but to focus on concrete images to communicate these: show the poverty in the way she walks, I might say, or: don’t tell us he is worried; show it in the dart of his eyes. I would ask the writer for particular rather than general information: not music, but Bach’s Overture in D; not the pub, but The Waggon and Horses. Precisely which pub is the sort of detail that is important to Dylan too; he is particular, not general. Dylan is concrete, not abstract. Dylan shows me things, he does not tell. Dylan, I would argue, intuitively adopts a writerly approach.

Flipping The Maxims

Dylan cannot, however, live wholly in the particularity; he needs ways of thinking about pubs in general and of understanding abstract concepts such as love and fear. As a writer I spend my time supporting students to make their writing concrete and particular; realising that my work with Dylan must travel in the opposite direction can feel quite challenging.

Although Dylan hasn’t engaged with communication systems that have been offered to him in the past there have been recent indications that he may be more receptive. Dylan has moved, for example, from using only deictic gestures (pointing to request, declare or ‘share the world’) to copying my use of representational gestures such as mimicking drinking and driving (not at the same time of course). This is an important shift in that it signals Dylan’s developing awareness of communication and its uses (I have written about Dylan’s use of gesture  here and about his use of speech here).

Symbols and signs can offer a good staging post between the specificity of photographs and the abstractions of language. I used these with Dylan when he was younger but he wasn’t particularly responsive then. In due course my signing tailed off and, without regular practice, I forgot the signs I knew. I suspect that Dylan wasn’t ready for the introduction of symbolic language at the time, but his recent interest in representational gesture has encouraged me to try again. ‘An idea in the highest sense of that word’, Coleridge reminds us, ‘cannot be conveyed but by a symbol’ (Coleridge, 1817).

Fingerman

Makaton is a language programme based on British Sign Language which combines signs with symbols and speech. In a previous post I’ve referred to the tendency of parents of autistic children to use gesture and facial expression so makaton feels like a natural and comfortable development for me. I’m hopeful that signing might be the next step for Dylan’s development in that it includes abstract concepts but makes these concrete by representing them through hand and finger pictures.

fingermanPractising signing recently I was reminded of one of my favourite movies, Stand and Deliver (1988). The film tells the true story of how a group of students at Garfield High, East Los Angeles, pass an AP Calculus test against the expectations of school and community, thanks to the dedication of their teacher Jaime Escalante. It is a wonderful movie which I’ve used for years with my students in order to explore key educational and social justice issues. It is also a marvellous source of examples of supporting the learning of students who aren’t used to succeeding and who lack confidence. Señor Escalante understands that his role is to give his students strategies for learning and that in Maths – like language, a subject of signs, symbols and abstraction – that means making learning concrete. One of the tricks Escalante offers his students is a method for calculating their Times Tables on their fingers; come on Fingerman, he says to one of his students who is hesitating to solve a problem: you can do it Fingerman.

I’ve been feeling a bit like Fingerman as I try to build signing into my everyday language practice. It’s early days yet but Dylan seems to enjoy watching me. Even if he doesn’t always attach meaning to the signs, I get the sense that he finds them pleasing aesthetically. This week I was signing the comment in Dylan’s link file, reading back what the care staff had reported about his day. As I signed, Dylan watched me intently, copying back my gestures. I was conscious of the dance of our hands through the air, drawing shapes and objects, describing actions and feelings. There was, I thought, a truth and beauty to our hands; they were searching for the best words in their best order.

 

References:

Samuel Taylor Coleridge (1817) Biographia Literaria
Samuel Taylor Coleridge (12th July 1827) Table Talk
John Keats (January 1820) Ode on a Grecian Urn
Ramón Menéndez (1988) Stand and Deliver


John Keats by Joseph Severn
oil on canvas, 1821-1823, dated 1821
National Portrait Gallery

Samuel Taylor Coleridge by Peter Vandyke
oil on canvas, dated 1795
National Portrait Gallery

The Frog Prince: autism, poetry and transformation

batdetectorIn a recent post reflecting on the causes of autism I referred to ‘magical thinking’.  By this I mean explanations for disability which aren’t based on scientific rationale or evidence but which acquire narrative status across a cultural group or society. In this post I present four poems which represent a mother’s changing view of autism in the years immediately following diagnosis. The post opens with a poem in which I try to make sense of autism through magical thinking. It then traces critical shifts in my understanding through poems written within the first five years of Dylan’s diagnosis and published in my collection, The Bat Detector.

Responding to my son’s autism through poetry has, I believe, shaped my thinking about disability. Writing a poem is a journey and in the course of it I frequently discover things I wasn’t previously aware of.  Furthermore the act of writing is transformative; I am changed not just by what I have written but through the process of writing itself. In this sense poetry can be considered as epistemology (i.e. a ‘way of knowing’) as well as a form governed by aesthetic and other principles.

Poetry is not, of course, my only way of knowing but it is important to me as a creative approach to thinking about autism. Partly this is because poetry allows me to adopt other voices and perspectives, something I have referred to in a previous post as ‘ethnographic practice’. This can be particularly illuminating as a way of knowing about parenting and disability. In this, of course, it is not unique; researchers also engage with other perspectives. However, poetry also allows us to engage with affective (emotional) material and gives us permission to explore our magical as well as scientific thinking. This post considers the contribution which such an epistemological approach can make to our understanding of autism.

*

moonIn the poem below I consider magical thinking as an explanation for autism through reference to an English folk belief that boys born on a moonless Monday become ‘idiot children’ (as they were known in the 19th century).  Dylan was born by the sea and that landscape makes an appearance in the poem. In the first section I use female mythology of the moon in the mother’s attempt to gauge her fertility by lunar cycles.  In the second section of the  poem I refer to the baby missing its opportunity to be born while the moon is visible in the sky (by the time Dylan put in an appearance it had gone).

The third and fourth sections of the poem refer to a trip to France the year after Dylan was born (see also this post).  Dylan was 15 months old and beginning to show symptoms of autism though we didn’t realise this at the time. I remember joking to my husband about the full moon shining on Dylan’s cot at night and us laughing about Dylan emptying the cupboards in the holiday home and arranging the pots. We had no idea of the significance of this. The day at Carnac (a megalithic site aligned with the moon) became legendary in our family history because of the severity of Dylan’s crying that day and our inability to calm him. In the final section of the poem I reflect that the lives of mother and son are somehow bound up with and controlled by the moon.

Moonstruck

Mother know’d ’twas no moon, for she asked another woman that had an almanac, as she did whenever a boy was born to her, because of the saying, ‘No moon, no man’ which made her afeard every man-child she had…  Thomas Hardy, The Return of the Native

i.  Moon Dates

I timed my eggs by the moon,
knew that when it bellied in the sky
my linings would break to maddening blood.

There must have been fog over the sea that June –
something to obscure that bony annulet from my view,
to wrench from my miscounting on it

an alternative computation.
I converted lunations to trimesters,
waited, patiently, for a March moon.

ii.  No-Moon Child

Waters lapping at toe and fist, cast out on a hawser,
syllables form, echoing in the stabbing dark:
I will be the moonstruck man you never wanted,

 the boy feared beyond imagined daughters.
The sea heaved, spilling spring tide

from a silver moon, shivering a swatch of light

to fill the emptiness, the silence of my due night.
Tick, tick. Its fullness splintered back to blackness
and the month stitched a no-moon Monday to his cry.

iii.   Afeard

As I set the child to sleep that night in a white cot
beneath the eaves of a manor house in France
I shuddered at the sight of moon

pooling full through un-curtained glass,
said that I had read this could send a person mad.
What lunacies beamed from that stark land

into his dreaming no-moon skull?
What fingers of leaching light softly thread
around my shuttered sleep into his exposed head?

iv.   No Man

The megaliths at Carnac point to the moon.
How he cried that day at those lunate bones
divining time from the sky’s light –

gouged the terrible sight of those stone fingers
(their silent, commanding point) from his eyes,
then emptied cupboards of annular things,

spread cups and saucers, pans and bowls in complex order
across the floor, moved his planets inch by inch into a
mooncalf heaven, mapped his constellation from these stars.

v.   Moon Life

And now, wordless, inhabiting a world as strange
and far away as moon he greets its mad latescence
with howling wails and wakefulness,

meets the coldness of its hoary stare through fingers
spread across the glass shredding silver,
minting slivers of no-moon in the sky.

His life and mine still timed by moon he lives
within the darkened days between its blooming,
breathes in space between its lunatic albescence.

*

Moonstruck is an example of magical thinking about autism in that it locates cause in folk mythology and nature. The philosophy of the poem is that the mother and child are victims of something which was inevitable and for which they were marked out by a force unknown and larger than them.  The mother and child have no power, or ‘agency’, in this process; they will not resist what has happened or attempt any change and, in this respect, there is an acceptance of the autism. However, this is not a positive acceptance; the actors are passive onlookers, constructed as victims.

In the following poem, by contrast, the mother-narrator does not accept her child’s autism. Although the representation of her son is loving, autism is depicted as something ‘other’ to him; it is an alien force which has taken over the child’s body and stolen the son from the mother.  There is no acceptance of autism – rather the mother is resistant to the idea that autism could be part of her child.  However, it is magical resistance she engages in rather than scientific challenge; the rescue narrative she dreams for her son is as romantic as the explanation she offers for his autism. A section of the poem is presented below.

Breath

 ii

When my son was less than two years old –
just before his autism was diagnosed
and my whole world fell apart as the child
I thought he was (and would become)
slipped suddenly away from me,
like the death of someone known, familiar –
I had a dream (or vision) in the night.
As I slept, became aware of someone
watching me – woke to see at the entrance
of my attic room, standing at the top of the stairs,
a blond-haired boy regarding me silently,
wise and sad-eyed. I knew it was my son –
though older (maybe seven or eight).
Then a voice – not his, but in my head,
like Aslan’s:  Wait, be patient, it said,
I have to go away but will come back
to you one day
.  I sat up straight –

anxious, wanting to hold on,
not let him slip away, be gone.
Then a flicker of breath against
my cheek as he disappeared.

That was years ago:  my son is seven now.
Sometimes I turn – try to catch
him at the top of the attic stairs
looking the way I dreamed he would –
try to conjure from his absent eyes
an answer to the patient watch
I’ve kept for his delivery back.

*

Dylan, seven

Dylan, seven

In the opening section of Breath (not included here) the mother-narrator reflects on her previous loss of a daughter through stillbirth. Breath, then, becomes a poem of sudden loss in which children are stolen away; these losses take place overnight when there is permeability between the living and spirit worlds and souls can cross over. In this sense the loss of the son to autism is constructed as an ‘othering’. The absent-eyed child is an imposter who has taken the place of the lost (non-autistic) child who the mother-narrator prefers.  The non-autistic child is constructed as superior not just to the imposter but to the mother; in this poem, it is the lost child who takes the explanatory narrative (‘I have to go away’) and who is charged with responsibility for managing his own return. The mother simply has to wait. This abnegation of maternal responsibility is part of a construction of the mother as passive victim who has to endure magical fate (Moonstruck) and mystical crime (Breath).

all that's left 002

Dylan in his helmet

In the next poem, instead of magical thinking the mother embraces scientific explanation. The poem uses the language and vocabulary of genetics. Through this, the mother  begins to construct herself as part of her son’s autism. This is not a positive involvement however – rather she fears her  potential responsibility for the wider family and future generations.  The poem explores fertility and reproduction and I relished the opportunity to write about menstruation, ovaries and eggs. However in other respects the poem was difficult for me to write. Reference is made to the mother’s new daughter as well as to the daughter who died; this living daughter is seen as the only ‘normal’ child, with both the dead daughter and the autistic son described as carriers of genetic ‘abnormality’. In this, then,  the mother continues to privilege normalcy over diversity.

I wanted to try and capture the reality of being a mother to an autistic toddler – the days when it’s a struggle to keep going until the release of sleep. While I was writing the poem I forced myself to be very detached about Dylan. At the time he had a policeman’s helmet (not a real one) which he insisted on wearing constantly and which makes an appearance in the poem. I don’t know who bought it for Dylan but I’m pretty sure I wouldn’t have. I came to really dislike that helmet.

Monster

The morning brings stench of broken linings,
blood like a butcher’s shop, thick and liver-brown.
Menstruating again – shedding another
of the last surviving eggs
from the store I was born with.

A geneticist assured me once it was all
a bit of a lottery; told me that in every
woman’s cargo of eggs there are some
that are bad – chance statistics of
abnormality or spontaneous abortion.

One of my long-shot eggs grew hardly
human. Today he is a monster on a train,
wearing a helmet. He emits strange shrieks,
makes bizarre grimaces with his face.
Except for providing food

I cannot connect with him today.
This defect cannot be detected
or tracked back, with certainty,
to the egg. But I know the possibilities –
the endless varieties of bad ovum.

Recall how, years ago, the geneticist
talked me through my still-born
daughter’s post-mortem.  The shock of it:
sheer extent of things gone wrong –
impossible – inside her.

I’d held her: committed her to memory,
through unstoppable tears.  She’s beautiful,
she’s so perfect
I’d said. I remember

how the doctor had touched her left foot,
showed me the odd splay of her toes –

said it sometimes indicated things gone wrong.
Later, the confirmation of ugly words:
fixed flexion deformities, syndactyly,
webbing, micrognathia.  It was the egg,
the geneticist said, that failed to divide:

an extra set of chromosomes –
Triploidy Karyotype XXX.
The only thing normal
reported about her: female genitalia
and reproductive system intact.

Now I have another daughter: she is
my bright and bouncing perfect egg.
Today, mourning my losses, feeling
ache and cramp of blood (the odds
on my eggs being good lengthening)

I fear the gift I have bequeathed:
wonder what the clutch of eggs
inside her holds, whether time-bombs
are already ticking, waiting to release
their hair-sprung triggers and go off.

*

Although the language of the post-mortem report is monstrous the mother finds her daughter ‘beautiful’ and ‘perfect’.  While she cannot connect with the monster on a train we are (twice) told that this is her experience ‘today’; the implication is that, as with ‘ordinary’ parenting, there are good days too.  Here, then, there are chinks of light: the mother finds the disabled child beautiful and claims disability as part of her life history.

dailymail.co.ukThe final poem in this post, Frog Prince, captures further change in the mother’s views as the narrator reflects back on herself over a three year period. The trigger for these reflections is the appearance of a frog in the garden. The poem recounts a real incident which offered a way for me to address perceptions of disability; through the narrative of the tadpoles I explore feelings of denial, responsibility and guilt, as well as raising the issue of the ‘invisibility’ of autism and its emotional impact on parents.  By the end of the poem the mother realises she has moved beyond acceptance of autism to celebration of difference: ‘I no longer wish for transformation’, she reflects, ‘would not plant the kiss’.

Frog Prince

A frog visited me this morning –
sat still as brown stone in the rockery,
rain falling on her pointed head.
I assumed, at first, this frog was there by chance,
her appearance not to do with me.
But she bulked big as a fist until I had to admit
it was probably her third summer,
could date her hatching to the year we’d stashed
a greedy harvest upon our bathroom windowsill.

As the spawn crammed in the plastic boxes, jars and pots
grew inky dense, we’d looked on aghast
at the wriggle and bud of tadpoles
sprouting extra limbs, additional heads –
stood by while some grew monstrously
as they fed on the weakened, selected the grotesque.
Witness and accused in this fishy metamorphosis
I’d closed the bathroom door on the alchemy,
tried to ignore my part in it.

But then, the night the comet came,
I’d rushed to wish into transfigured sky  –
one more try for my miracle,
for something to unravel and re-thread
the tangled wires in my son’s head,
for a word, a gesture, a touch of human love
to issue from his perfect lips, his gilded arms.
But tadpole-skulled, head full of frogs,
I’d  imagined, instead, this simplicity –

that my son had grown two heads, no legs,
been eyeless, deaf – that some strange growth,
or absence, had marked him out, made difference clear.
And in this horror I’d turned them out – stumbled in
to the stagger and slosh of stairs, the weeping garden,
stood beneath a tail of light, frogs falling from me,
their mutant bodies sliding through guilty hands.
Next day I watched birds come at dawn,
their derrick heads bobbing, clean-picking the lawn.

The escaped frog that visited today
brought me in a leap of time to realise
that, since her freedom, things were changed.
The difference this – that I no longer wish
for transformation, would not plant the kiss.

*

wildlife-imaging.co.ukLooking back at these four poems years later I can detect the shifts in thinking which I perhaps wasn’t conscious of at the time but which poetry helped me to explore. Mapping models of thinking about disability onto these poems, you could say that the mother moves from ‘primitive’  beliefs about autism (Moonstruck and Breath) through a Medical Model approach (Monster) to a position more akin to that of Neurodiversity (Frog Prince). While parents may not find it helpful, in the aftermath of diagnosis, to think in terms of philosophical models, applying such thinking retrospectively can be illuminating. The practice of writing creates a reflective space which allows us to record our journey through difficult terrain, thus supporting a process of discovery and transformation.

Reference:

Elizabeth Barrett (2005) The Bat Detector, Wrecking Ball Press
Thomas Hardy (1878) The Return of the Native, Penguin Books

Source of images of frog, tadpoles and moon unknown but appreciated.