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.

*

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.

This slideshow requires JavaScript.


References:

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

Ways Of Seeing: sepia, rose, 3D or lens-free?

The recent developments in Dylan’s behaviour are so puzzling they seem to need left field answers. I pore over the incident log searching for a pattern. When I can’t find one I turn it around and look again; it must be here somewhere, I tell myself, I just can’t see it. I share the log with others – maybe they will see something I’m missing.

August 2014 056Living with autism is a bit like being a detective. Usually I enjoy this; stumbling across the unexpected or finding a missing piece of puzzle is satisfying. Perhaps this time I’m looking too hard or in the wrong places: if there isn’t an obvious explanation I’m probably not going to find a cryptic solution in a log. Maybe I just need to stay watchful so I don’t miss the clues when they come.

My records, for example, could be part of the problem. Perhaps I can’t find a pattern not because of the way I’m looking at the log but because of the way I’m seeing the behaviour. Parenting Dylan, I’ve suggested before, is like ethnography; to understand his world I’ve had to walk in his shoes and look with his eyes. If I can’t make sense of Dylan’s behaviour then maybe I need a different way of seeing – otherwise, I might not stand a chance of that flash of light from the left hand side.

roseMy friend Jack, who blogs about being the sibling of an autistic man (among other things), can turn a cliché on its head. We view the past, he says, through sepia spectacles; it is the future we see through rose-coloured glass. Such optimism. Parents of autistic children can feel deep anxiety about the future but I suspect many of us bury it. I don’t know whether I have become a more positive person through Dylan’s autism or whether I was always an optimist but these days I wear prescription rose. They’re good up close, I think, but not so great at a distance. Perhaps that’s part of the problem: could my present-time focus be preventing a long-view of Dylan’s needs?

*

Canal day 009Here’s Dylan with our friends Julie and Ella earlier this year; we’d been to Cineworld to see Tarzan. Ella is a seasoned cinema-goer but for Dylan this is still a relatively-new experience. I have worked hard over the last few years to support Dylan to access the cinema; we started with Autism-Friendly screenings and after a while were able to attend selected mainstream films. On this occasion Julie and I had planned to take Ella and Dylan to the cinema at the end of a canal walk; we would be tired and this would be a good way to end the day.

Canal day 006As it was hard to judge timings we would have to choose the film on arrival; not a problem at a cinema complex where there would be multiple screenings of children’s films. The first suitable film, however, turned out to be a 3D screening. Dylan hadn’t been to a 3D film before. I don’t think he’ll wear the glasses I said to Julie. As the glasses came in sealed bags we couldn’t try them before buying tickets. If Dylan wouldn’t wear the glasses, the man at the desk advised, he wouldn’t be able to enjoy the film; without them it would look blurry. The next regular screening was not for another hour; Dylan wouldn’t wait that long so, armed with pick ‘n’ mix and specs, we went in.

Canal day 010All appeared to be going well. I explained to Dylan about the glasses. I photographed him in them. He seemed pretty chilled. I turned to Julie; when I looked back Dylan had removed the lenses from his specs. Julie and I tried every which way but could not get those lens back into the frames. It was frustrating for me to have paid for glasses that hadn’t lasted to the start of the film but it would be even more frustrating for Dylan once the film started…

In the event we managed; Julie and I shared, sacrificing Tarzan’s outlines so that Dylan could experience him in 3D. Dylan seemed to prefer his lens-free glasses: he wore them as we left the cinema and, as I remember, kept them on in the restaurant afterwards. I think he looks rather handsome; the frames suit him. Julie pointed out it was actually a sensible thing for Dylan to have done: You gave him some glasses he couldn’t see through. He wanted to see so he took the lenses out.

*

August 2014 067 I have two pairs of glasses (as well as my rose spectacles) which I alternate between. My optician tells me that bifocals are inevitable at some point. This has happened recently and fairly rapidly; I’ve not had to think about my own eyesight much before now. I did, however, have to spend time at the eye hospital when my daughter was young.

verywellbeing.co.ukShe had a squint or ‘lazy eye’; her father noticed it when she was only three years old (for some reason I could never see it) so it was picked up relatively early. Before a treatment path could be decided upon the doctors needed to undertake a comprehensive assessment of my daughter’s eyes including standard sight testing. This wouldn’t be possible, I told the optometrist. Her eyebrow raised. I could see ‘problem mother’ written across her face. Well we’ll just have a go shall we, she said. But my daughter, I explained, wouldn’t be able to complete the test because she didn’t know the alphabet: she won’t be able to tell you what she can see, I said.

My daughter was at a Steiner kindergarten and in line with Steiner philosophy my husband and I had made a decision not to introduce formal learning until she was seven. My daughter would not therefore be able to name the letters on the sight chart even if she could see them. The assessments were re-scheduled and in due course full measures obtained. I sometimes wondered whether the delay in gathering this data altered the course of treatment; although there had been talk of surgery my daughter controlled the squint and there was no intervention.

Dylan’s sight and hearing have never been assessed and, given the way measurements are taken, it is unlikely that they could be; for all I know Dylan may be short- or long-sighted. Medical tests and examinations require more than the informed consent of the patient (challenging as that can be); they usually require language and sometimes literacy. My daughter’s inability to report what she could see because she wasn’t yet literate was temporary; not completing the eye test did not have major implications for her health (and may even have helped given that it delayed intervention). For someone like Dylan, however, who is neither literate or verbal, the challenge posed by the need for medical examination is significant.

*

trance2Dylan has now been referred for neurological and psychological assessment; while the changes in his behaviour may be functional and an attempt to communicate, there is a possibility that Dylan is having seizures. Before Dylan is able to access specialist services, however, he needs to have had a full medical examination to rule out other possible causes. Dylan may, for example, have a persistent ear infection or chronic disturbance in his ear; this could explain why Dylan grabs at ears during an episode. Equally, Dylan may be experiencing headaches or some other underlying problem; the nose bleeds which Dylan has always been prone to have increased in frequency and duration in recent weeks.

Getting Dylan to accept a medical examination is, however, another matter; he refuses to allow our family doctor to carry out even the most perfunctory of observations. I have made previous reference to Dylan’s refusal to consent to medical intervention here and here. Apart from a couple of emergency situations this has never posed a problem in that Dylan has always been healthy.

Recent developments have, however, put Dylan in a difficult position in relation to medical services. The possibility that his distress may be due to an undiagnosed medical condition is troubling; Dylan does not understand that ‘medicine’ is a good thing and can make you better and he cannot therefore make an informed decision to accept or reject it. I act in his best interests. At what point might that involve over-ruling Dylan’s resistance? And what exactly might that involve?

In a previous post I have argued that we cannot leave autistic children until they are adults to encounter medical services. By then they may, like Dylan, be resistant to something which is unfamiliar and feels threatening. While Dylan was growing up I helped him to establish boundaries in relation to his own body; how does he square medical examination with my insistence that he shouldn’t remove clothing in front of strangers or let anyone touch him? I realise, now, that this lesson needs qualification.

*

dentist1I once read that the development which has contributed most to human happiness is dental care; before advances in dentistry, apparently, toothache was responsible for great misery. Happily Dylan (as far as I know) does not suffer from toothache; Mr Jones the dentist has worked patiently to support Dylan through ‘rides on the chair’ to the full examinations he now receives regularly. I have no idea whether this would help if Dylan ever needed any work doing but it would, presumably, assist with diagnosis.

Surely we could apply the model of regular dental check-ups to general health care for autistic children? Regular contact with professionals and equipment (stethoscopes, thermometers, BP monitors etc) when Dylan was young could have helped prepare him to accept the basic medical observations he is so in need of now. If you are a parent of a young autistic child, you might want to lobby your education provider to incorporate such a programme. Alternatively, you could take your well child for regular check-ups with your family doctor; one day you may be glad you did 🙂

*

All images taken by Liz except for the rose-coloured spectacles (huffingtonpost.co.uk) and the sight test chart (verywellbeing.co.uk).

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.

Poetry And Postmen: a parent’s journey through autism

The_Guardian_12_10_2013The Royal Mail Share Offer in England has meant a lot of coverage in the British Press for Postman Pat. “Pat”  Dylan said to me yesterday, pointing to a picture in my newspaper of a City Trader wearing a Postman Pat costume.

I wouldn’t want to return to the days of Postman Pat. Between the ages of 3 and 11 Dylan’s constant companions were soft toys of Pat and Jess which Dylan would not be parted from; we lived in a loop tape of Pat’s jolly theme tune. I tried to think positively about Dylan’s obsession, imagining that one day he would help deliver letters in an idyllic community where everyone knew and loved him. I bought Pat’s educational videos and used these to encourage Dylan to learn his colours and numbers. I attempted to support Dylan’s communication and basic social skills with Pat games and toys. I did my best to turn Postman Pat into a resource.

Dylan’s fixation on Pat during these years answered a need which would vanish one day as quickly as it had emerged. What I didn’t realise, when the Pat era ended, was that he would be replaced in Dylan’s affections with other characters. We have since moved through a range of total and all-consuming interests, the latest of which is Peter Pan. On days when I am fed up with Peter Pan, I remind myself that this interest will also give way in time to new passions and desires.  I say ‘interest’ rather than ‘obsession’ deliberately: this shift in my language represents the transformation my thinking has undergone in relation to Dylan over the years. This post offers some reflections on that journey.

Being Dylan

carlisle 028Another memory of a postman: I am working from home while Dylan and his younger sister are at day care and my husband is at work.  I’m supposed to be writing a report but my mind keeps wandering to Dylan.  Recently, he has been gathering up his toy cars and lining them bumper to bumper through the house.  He spends hours fussing about the line, making choices about which car goes where and seeming to have a very clear set of rules for the making of the line. Once made, no one can touch or interfere with the line; if a car is accidentally knocked, Dylan cries inconsolably, destroys the rest of the line and flails around in distress. My three year old daughter has started copying him; one day I find her lining the cars up just like him, only her play is accompanied by a commentary: ” black one; you are sad; your wheel is broken blue one.” 

This morning, alone in the house, I fetch the cars. I lie on the kitchen floor. The quarry tiles are hard and I like the way the cars skid as I wheel them into position. I squint under the low chassis of one and at the angles made by another. I try and make sense of their colours and shapes and sizes.  My husband has taken the rubber tyres off the wheels so that Dylan doesn’t swallow them and I notice how the cars make wobbly contact with the floor. I am annoyed by this and try to bend some of them with my teeth. ‘Like Dylan’ I think. 

It is a sunny morning and the back door is slightly open to create a through-draft out onto the patio. I run my line of cars across the kitchen floor then up over a chair and onto the kitchen table, then down again and onto the carpet. I am almost at the patio doors when a noise makes me turn around.  Standing in the doorway watching me, a mix of amusement and concern on his face, is my postman. He is clutching a package that won’t go through the letter flap. He is sorry he says – the door was slightly open. I stand up, still holding half a dozen matchbox cars I haven’t been able to fit into my line. I feel flustered and that I ought to explain.  “They’re not my cars” I say at last. “They’re  my son’s. I’m just checking them.” 

By handling the cars as if they were mine,  by squatting down on the floor as if I were a child and by focusing on the sensory  elements of the play I entered a different realm and a new way of apprehending the world.  Afterwards I wrote the following poem which was included in my second collection,’ The Bat Detector’. I’ve only ever published two poems in Dylan’s imagined voice: this one and another (‘Toe-walking’, in my first collection). Reflecting on these early poems I realise they were part of my process of coming to terms with Dylan’s diagnosis and trying to understand his autism.

Dylan’s Cars

Green vintage (top gone, radiator rough on my tongue).
Daddy took the tyre off.
Spin, spin. Yellow van with springy wheels.
I flick my nails against them, make them spin.
Black cab J219 CYO, big and curvy,
Makes the line messy.
I spin its wheels then slam my arm down, let it go.
Silver tanker with four at the back two at the front:
nice and long (spin spin spin spin)
wheel it up behind the van.
Yellow bus, 8 windows one side, 7 and 2 the other,
3 at the back, 1 at the front. 21.
Only 4 wheels though. Spin, spin.
Number 5:  green racer.
Then the  neee naaa neee naaa
thin white car with blue windows
and a red box on its roof.
Good spinner.
Blue vintage next. White roof, long wheel arches,
tyres missing, front right wheel sticks.
Move it into position (nice and slow).

I squat down, chin on the floor,
so they grow big like mummy’s car
and all the others going past
with spinning wheels and flashing lights
and jumbled bits of people:
eyes, mouth, hands that don’t make sense.
This is my line.
Bumper to bumper,
these are my stuck cars with no drivers,
going nowhere.
Spin, spin.

Writing in Other Voices

Writing in another voice was not something that was new to me; it is common practice among writers and is something I had done as a poet and asked others to do when running writing workshops. One of my favourite exercises is to get students to write from the perspective of another character drawn from an envelope of possibilities. My envelope would typically include characters such as ‘undertaker’, ‘vicar’, ‘prisoner’ or ‘refuse collector’.

lightbulbOne year a student approached me after class to say that she had Asperger’s Syndrome, struggled with empathy, and did not think she would be able to tackle the writing exercise. She had drawn ‘Butcher’ from the envelope which she didn’t want to try. Drawing an alternative from the envelope didn’t seem to help.  In the end I suggested to her that she might be able to apply some of the technical principles we had been talking about in class to an inanimate object rather than another character.  The student agreed to have a go and produced a marvellous piece spoken in the voice of a building she was familiar with.  She went on to produce a series of poems spoken in the voice of objects, a project which proved so rich that the following year I included a number of inanimate objects in my envelope. That  year, however, one of the students wrote on her module evaluation:  “I did not appreciate being asked to be a light bulb, thank you.” 

Writing and Parenting as Ethnography

mocassinsI often refer to the Native American saying about not being able to know another man until you have ‘walked in his moccasins’.  I ask students to take off their shoes and imagine themselves walking in the shoes of another.  This is a bit like method acting where an actor attempts to physically experience some aspects of a role which they are to play. 

This process of inhabiting the life world of someone who you want to understand better also reminds me of ethnographic research. In my discipline of education, ethnography is defined as ‘culture studying’ and is used as a framework  through which to understand groups who might not otherwise be accessible to researchers or whose experience of education is so particular that this up-close approach to research is required.  Ethnographic research requires the researcher to gain privileged access to the community they wish to study. The researcher needs to spend long periods living alongside the group, observing group members and shadowing their experience of the world. The researcher needs to become part of the group and to participate within it, observing the group’s rituals and practices, and showing an understanding of and respect for the group’s values.

The responsibility of the researcher in conducting an ethnographic study, I tell my students, is both to the community  being studied and to the research community itself.  In gaining access to a group the researcher has ethical responsibilities to members of the group.  However, the  researcher also has a responsibility to return from the community which she has studied and report back to the wider research world, sharing and interpreting the life world of the culture-sharing community for the benefit of others. This requires the researcher to enter into the world of the community she is studying sufficiently to understand it as if she were an insider, but to retain enough detachment from the community in order to report back to the world as a privileged outsider. 

I sometimes think of writing as ethnographic practice, particularly when I am trying to write in a voice other than my own or encourage my students to write. I also sometimes think of parenting Dylan as a form of ethnography; many of the key features of ethnography I suggest here could equally be applied to caring for an autistic child. This would also apply to the requirement that the ethnographer interprets and reports back to the world as a privileged outsider; parents of autistic children spend a lot of time explaining to others and awareness-raising in the wider community.

Going Native

carlisle 029Sometimes researchers become so involved with the community they are studying that they struggle to retain the detachment required, a process referred to as  ‘going native’. In my last post I referred to a conversation between myself and a counsellor in which we used the metaphor of walking in Dylan’s shoes to describe being absorbed by the process of parenting  to the point of neglecting my own needs.  I can see that spending significant periods of time walking in your autistic child’s shoes, and coming to identify with the meanings they attribute to the world, could be considered a sort of ‘going native’.  There is a fine line to walk, perhaps, between wanting to enter into your child’s world in order to understand him better, and empathising  with his world to such a degree that you forget it is not the ‘norm’. I can see how the latter might happen; families become so accustomed to life with an autistic child that it can genuinely become a ‘new norm’. And if in the process of living with people we tend to take on some of their characteristics and beliefs, why would this be any different if we live with somebody autistic?

But what about the other side of the line? Do the benefits outweigh the potential risks of ‘going native’.  I would suggest that the more I can see the world through Dylan’s eyes, the better equipped I am to intuit his needs and support him to negotiate the non-autistic world. In my experience, it is my attempts to ‘walk in his shoes’ which have increased Dylan’s trust and confidence in me more than anything else. If I have tried to experience something the way that Dylan experiences it, then I am far better placed to help him avoid or cope with the things in life which he finds most difficult.

Woods and Shopping Centres

Christmas 2013 028When  Dylan was very young he used to lie down in the woods and stay there for long periods on his back, staring upwards. During these times he would make noise, squint his eyes and contort his hands in front of his face.  I couldn’t really tell how he felt at these times, nor did I know how to manage these walks so that I could keep Dylan moving. In the end, rather than stop the walks or intervene, I decided to walk in his shoes. This involved me mirroring everything which Dylan did, a response which I knew about having visited the Options institute in the USA, where this approach was pioneered.  Once I was in Dylan’s world I was able to experience the sensory world – the light through the leaf canopy, the wetness and softness of the leaves underneath me, the scent of soil – as he does.  This felt like a gift to me: a way of experiencing the world which convention would have prevented me from having, but which Dylan allowed me to enjoy.

The experience in the woods gave me the confidence to adopt the same non-directive strategy in a quite different environment.  Meadowhall Shopping Centre is a large indoor mall in our home city; while I wasn’t in the habit of going there I had noticed that Dylan sometimes found the environment difficult when we did.  On one occasion this involved a full-blown meltdown during which Dylan was prostrate on the floor, hysterical and unreachable.  I decided to copy him, thinking Dylan was more likely to let me help him if I got alongside him. This proved instructive.  Not only did I find that this was indeed a way of reaching Dylan at a moment of crisis, I also discovered that a shopping mall is a peculiarly unpleasant place if you experience it solely with your senses. Once I had stopped thinking about whatever it was I was there to buy, and let myself simply experience the place with my body, I realised how confusing and distressing Meadowhall must be for Dylan.

Poetry and Parenting

Not only did this process help me to develop an imagined voice for Dylan, I think it helped me to care for him with more confidence and respect. Once I had lived alongside Dylan in this way I had a clearer view of why our non-autistic world might often seem strange and difficult and frightening to him. Parents caring for children with limited communication need to develop ways of understanding which help them to care and to advocate  positively and effectively. This will vary for different families but all parents, I think, need the skills of ethnographers in order to understand their autistic children’s interests and needs.

For me, my writing practice has been an important part of this ‘ethnographic parenting’. I don’t think I would have understood some things about Dylan without trying to write about them; certainly the poems I have written in Dylan’s imagined voice and the events I have described here make sense to me as ethnography. In this respect, my writing has influenced the way in which I’m a mother to an autistic child. However, being the mother of an autistic child has had just as powerful an influence on my writing and on the  poet I have become..

 

Reference:

Elizabeth Barrett (2005) ‘Dylan’s Cars’ in The Bat Detector, Wrecking Ball Press