Respite Or Short Break: what does it matter?

Bridlington retreat 026If someone were to ask what single thing makes the most difference to my life without hesitation I would say respite. Well actually I might hesitate a bit but only over terminology: there has been a move in the last few years away from the term respite, which is felt to have negative connotations, in favour of short break.

Whatever we call it I’m very glad of it. For some years Dylan has spent one night a week and occasional weekends with a care provider. Recently I decided that it was time to trial a slightly longer period away from home. Last week, therefore, Dylan had five sleepovers while I had my first significant break from caring in 20 years. In this post I reflect on the value of short breaks for carers while in a linked post I consider some of the challenges involved in accessing short break provision.

What we mean when we talk about respite short breaks

I didn’t know about this shift in terminology when my local Council awarded families with a disabled child a one-off short break payment last year. As far as I was concerned a ‘short break’ was something I had with Dylan whereas ‘respite’ was something I had alone; one was a break from our daily life and the other was a break from each other.

Knaresborough 045Surprised by the payment but pleased to receive it I provided details, as requested, of what I would do with the grant: I would take Dylan to Knaresborough to see Mother Shipton’s Cave and for a trip by steam train. We had a lovely time but a man from the Council later explained to me that the short break payments were aimed at carers, not the person with the disability. That money was for you he told me, barely hiding his amusement: it was for you to have a break, not Dylan.

I understand the reason for the change in language; the word ‘respite’ problematises the disabled person by suggesting that the carer requires space from a burdensome situation. It also implies that the benefits are only for the carer. Neither of these are the case. ‘Short break’ may be more neutral but it is also unsatisfactory because it doesn’t indicate what the break is from. In the absence of an alternative, however, I will use the term short break here to refer to breaks for carers from which the disabled person also benefits.

Spending time

I know families who don’t feel the need for short break provision. In some cases this is because they already have access to informal support from relatives and sometimes it is because parents don’t want to be away from their child. For other families, however, short breaks are invaluable; in my case they have enabled me to continue to care for Dylan at home.

When I first became a single parent Dylan’s overnight breaks were essential as I taught an evening class; while my mother was able to look after my daughter, caring for both children became increasingly difficult. In time I was able to reorganise my teaching so that I no longer worked outside school hours though I continued to use Dylan’s short breaks to meet workplace demands at certain times of year. For some families, then, short break provision enables employment.

Maintaining a job or career is not just about financial independence; it also contributes to my sense of self. In this way, short breaks help to nourish the parts of my identity which are not solely about being a carer. They also provide space for my identity as the parent of a non-disabled child; while my daughter lived with us she had first claim on this time. Enabling parents to give siblings the attention they need is perhaps one of the key benefits of short break provision.

When time away from caring is limited it encourages careful reflection on priorities. I have always liked to spend short breaks doing things which Dylan has no interest in (I suppose this removes any guilt that he is being excluded from something he would enjoy) which would typically involve the arts or sports. There is a tendency, when time is limited, to make every minute count. This can create its own stress however: I am often exhausted when Dylan returns home, having rushed back from somewhere myself (during weekend breaks I have made regular trips to London and even Paris). I can also feel frustrated at ‘wasted’ time; tolerance for a bad movie is low when doing that meant not doing something else. Recently I’ve discovered that one of the best ways of spending time is to simply stay home and enjoy the space (a sign, no doubt, that I’m getting old).

Learning to let go

I remember how reluctant I was, initially, to accept short break provision. For parents, such support can feel like an admission of failure or an abnegation of responsibility. It can also provoke feelings of guilt as well as anxiety about whether your child is being cared for as you would want. My conversations with other parents lead me to believe this is entirely natural and part of the process of learning to let go of a child who has additional needs.

Although I know that Dylan and I benefit from short breaks the wrench at separation never ends. A single night, or even a weekend, is not long enough to switch off the alert of the carer brain. If I dose off on the sofa in the evening I wake with a start, my first thought where is Dylan? then the panic that I’ve slipped asleep while he is still awake and the race upstairs to check on him. On short break nights, my second waking thought reminds me that I am alone in the house; I can relax. But this state of constant alert doesn’t subside. I live my life this way; antennae listening out through the night, in case he wakes and needs me. And as well as the fundamental caring of the brain there is the mother’s heart which, sensing an absence, aches its remembrance.

Recently I have realised that it is not only me who has had to learn to let go; Dylan also has to accept change. I wanted Dylan to spend a longer period away last week as part of what I hope will be a phased transition to him eventually leaving home. I don’t want this to happen yet but when the time comes I don’t want Dylan to move suddenly from living at home to living elsewhere. My aim, therefore, is to gradually increase Dylan’s overnight breaks so that the balance shifts away from me. Although I am not a fan of Personal Budgets I have to acknowledge that it is thanks to this system that I was able to organise such a break for Dylan. While the standard care package offered to children up to 18 is excellent it isn’t flexible in that you cannot change or save days in order to access short break provision at different times or for alternative periods. A Personal Budget can, however, be used to fund a longer break, providing it is approved as part of a Support Plan.

Making self matter

How long before I have no right to call myself a poet? I asked a friend recently. I haven’t managed to write anything new for months. It may be hard for me to consistently live this but writing poetry is the most important thing I do for me: it is the critical part of my identity. Writing poetry makes a difference to who I am – it is what matters. It is perhaps strange, then, that the description I gave of the things I spend my short break time doing doesn’t include writing poetry.

The reason I don’t use Dylan’s short breaks for writing poetry is that they are overnight breaks and I can only write in the mornings. If I work on a poem after 2pm I usually ruin it. Since keeping this blog I have discovered I can write prose later in the day, but the only thing I can do with a poem is a bit of editing if I’m lucky. As I’m at work or caring for Dylan in the mornings, getting any writing done means being up at dawn. So when Dylan’s short break provider agreed to support Dylan for a longer break I knew that what I wanted to do with the time, more than anything else, was write.

I would rent a cottage, I decided, within a two hour journey from home (so that I could get back easily if needed). I would choose the time and location to fit in with a poetry festival so that I could socialise if I wished. As the main aim was to write I would choose a quiet location. I would allow myself a laptop for typing up drafts but prose and social media were banned. And, at a girlfriend’s suggestion, I would take my bike.

Going solo

Bridlington retreat 018I don’t use my bike often because I am usually with Dylan who needs to ride tandem. Taking my bike to the cottage was not something I would have thought of if Caroline hadn’t planned to join me for an afternoon’s cycling while I was there. In the event it didn’t work out for us to meet up but I was enormously glad that we’d talked about it seriously enough for me to sort myself out with a bike rack and take my Tantrum with me.

It had been touch and go, though, whether I would even get to the cottage. On the morning of departure, not having packed or found a bike rack I was competent to fit, I temporarily lost confidence in the trip. I’d tried to prepare Dylan as best I could for what was to happen but as I put him on the bus for his day care centre that morning I could tell by a look in his eyes there had been a misunderstanding. Dylan had his trundle case with him as he was going to be away for longer. I suddenly realised that he had assumed that the suitcase meant we were going on holiday together as we had recently. Indeed, when I returned to the house I found that Dylan had put steam train leaflets on my desk. And so I burst into tears convinced I couldn’t leave him with such disappointment.

Later that morning I remembered that I had persisted with overnight breaks in the past when Dylan had been reluctant to go. I reminded myself that it wasn’t so surprising that Dylan would want to be with me; of course he would prefer an easy life with his indulgent mother or to be in his own space. This, I realised, reinforced the need to go ahead; Dylan would have to be independent from me one day and spending a longer period of time away from me now could help him to prepare emotionally. I ticked myself off for the suitcase mistake and went to look for a bike rack.

In praise of short longer breaks

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South Cliffs, Bridlington

And so I set off for the Yorkshire coast on a sunny Wednesday, my bike strapped to the back of my car and my face puffy from crying. I was conscious of Dylan not being in his seat in the back. I found myself saying ‘Dylan would like that’ or ‘I wonder what Dylan is doing’. At some point though I put on a U2 CD which Dylan won’t let me play: may as well make the most of it.

When I stopped at a pub for a meal en route I automatically ordered for Dylan as well. Arriving at the cottage I felt a twinge of guilt when I saw that I had booked into Dylan’s dream world (sand, sea, barn owls and nearby swimming pool). As I chatted to the owner that evening about his autistic son (what were the odds on that I wondered?) I realised how impossible it was to stop being a carer; I might be off-duty but caring for Dylan was part of my identity and I couldn’t drive away from that. I had to hope the poet in me wasn’t easily lost either.

South Landing

South Landing

The first night I did the dosing on the sofa thing – woke and sat bolt-upright trying to figure out whether I’d put Dylan to bed or not – but within 48 hours I’d managed to embrace the joy of pleasing myself. The moment I felt my freedom from responsibility came the next evening while cycling into the local village to post a letter. This might seem a small thing but slipping out to buy a pint of milk or catch the post is not something I would normally be able to do. I would have to take Dylan with me, which would involve interrupting his evening routine, getting him ready, explaining what was to happen and hoping that he would cope (such a brief outing would be  frustrating for Dylan). This is the sort of scenario that I would avoid by always planning ahead and ensuring that we have everything we need at home and I have done all urgent jobs. Cycling impromptu at nine o’clock at night to post a letter felt absolutely joyous.

Bridlington retreat 038

Flamborough Old Lighthouse

Though the jewel in my week was undoubtedly the four hours uninterrupted writing each day, I discovered there was no end to the benefits of not caring. There were irregular meal times. Lane swimming. No Disney. Cherries to myself. Poem breaks during cycle trips. Waiting half an hour (quietly) for the barn owl to return from hunting. Leaving the cottage door unlocked. Having my papers spread all over the table (Dylan constantly tidies my desk). Lingering over coffee. Browsing antiques in the Georgian Tea Rooms. Sitting on the pier. Just sitting. Watching the gannets at Bempton Cliffs. Staying out late on the bike, into the evening, hungry and tired.

Towards the end of my week away I cycled down to the post box again. This envelope was addressed to Dylan at his short break home. I calculated it would just reach him before I got back. I’d never been away from Dylan long enough to send him something through the post. Was it silly of me? How would he know who the card was from? I chose a leaf-cutter ant. No one but me, I thought, knew that he liked them; surely he would understand the card was from mummy? As I dropped it in the post box I realised that Dylan had grown-up; he was at the start of his adult life. It felt like I was at the start of another life too, learning to let go.

 

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I returned home with a draft of a tricky poem I’ve been wanting to write for two years. As I drove back I told myself that I should be glad of this, even if I found things hadn’t gone so well for Dylan. I was delighted to find, however, that he had been fine; the trundle case, I was told, seemed to have helped him understand his short break would be for longer. Dylan seemed delighted to see me. I gave him the white chocolate footballer I had bought him and later, when he had unpacked, he showed me the card he had stood on his cupboard.

return from brid 001

All images, including a selfie, taken by me.

May Is The Cruellest Month

April is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

 T.S. Eliot, The Burial of the Dead

It may have been April for Eliot but for me it is May, with its pattern and paradox, its light and shade, which is cruellest. O I know that it is lovely. When I lift my head I catch sight of the blossom. Here is wisteria blooming in my courtyard and bluebells at the foot of a neighbour’s tree. Here are wild service trees along the route to work and cherry petals heaped on pavements. Here, at the edge of the city, are fields of yellow rape and hawthorn hedges.

                                                If you came this way,
Taking the route you would be likely to take
From the place you would be likely to come from,
If you came this way in may time, you would find the hedges
White again, in May, with voluptuary sweetness.

 T.S. Eliot, Little Gidding

But I know that when the May breaks out in creamy flowers, musky as death, I must keep my head down.

last day of May 010

Marking Time

As a child and young woman May enchanted me. Not one to believe in the stars I had to admit there was something about Taureans; my best friends and nicest boyfriends, it seemed, had birthdays in May. There were high days and holidays: May Day, Half Term, Spring Bank. And there were days of sudden warmth better than any in mid-summer. May was charmed and lovely.

May 013Only in adulthood, once I’d entered the education workforce, did it became cruel. I’m lucky to earn my living as I do; I love my teaching. But twice a year, in January and May, it is marking time. The marketisation of higher education in England has led (among other things) to an increased emphasis on accountability and efficiency. The prompt assessment and return of student work is something which is believed to influence student satisfaction and most universities have reviewed their policy and practice in relation to marking. it is not uncommon, as a result, for academics to be working to assessment deadlines of three weeks or less.

It is undoubtedly the case that some of the developments in higher education in the last five or ten years have enhanced the student experience. There was, it’s true, a laissez-faire approach to the return of student work in many institutions previously. I’m not convinced that the three week turnaround is appropriate; I think students care about the quality as well as speed of feedback and the short deadlines do, without doubt, limit the time which can be spent on individual scripts. However, I support the general principle of setting and meeting deadlines for the return of student work. And I actually don’t dislike marking: even with the limitation of feedback deadlines it offers an opportunity for dialogue. Why, then, is Maytime marking so cruel?

Marking and Caring

I’m fortunate to work in a sector where it has been possible (with reasonable adjustments) for me to continue working while caring for Dylan. That wouldn’t be so easy in some occupations I know. Even with adjustments, combining working with caring is challenging when you are a single parent. For me, marking time is when I particularly feel these pressures.

Working parents of very young children may recognise some of the conflict I experience at these times. In order to meet marking deadlines it is quite normal to have to work through weekends and at evenings. Like a much younger child, Dylan finds it difficult to understand why it is that ‘moo-ey’ (as he calls me) is suddenly not as available or responsive to him at these times. Whereas normally we would be out and about in the community and going for long walks in the Peak District, during the marking period my caring is limited to ensuring that Dylan is safe in the home while I work.

During the January marking period this somehow doesn’t feel so bad. The weather is usually poor and the days are short, lessening the hankering after time outdoors. I can often hunker down with my marking while Dylan watches DVDs. But in May Dylan’s frustration with the situation is palpable. He has a built-in body clock (which I’ve written about elsewhere) which means that at 2.30, on the dot, if we are still in the house he wants to get out. Dylan will come to find me, then, wherever I am and strike his ‘I’m waiting’ pose. This involves Dylan standing – back straight, arms crossed – with a fixed stare. He waits patiently in this position, watching me. His gaze is steady. ‘Two minutes’ I sometimes say, ‘just two minutes and I’ll come’. That’s not true and Dylan knows it. Eventually, holding his position, Dylan will tell me what it is I am doing: ‘poota’ or ‘rea’ or ‘wye’. Under normal circumstances, I will stop, then, and respond to his not unreasonable request. In May, though, with a self-imposed daily quota of scripts to read in order to meet my deadlines, I may stall. And then ‘na na na na na’ Dylan rattles at me, like an angry machine gun.

May 011When Dylan was still at school the challenge of marking during May was compounded by the regular school holidays. The May Day, Half Term and Spring Bank which had so beguiled me as a child became a headache as a parent. It always felt to me like a lose-lose situation. If I succumbed to Dylan and the outdoors I couldn’t relax for worrying about getting the marking done. If I tried to manage Dylan at home while I worked we would both end the day frustrated and unhappy. While we were a two parent family my ex-husband and I would alternate shifts of child care and working which was slightly easier – though still, I recall, with the potential for angst and frustration.

There is no easy solution to the challenge of managing caring responsibilities with pressure points in working life. Having friends and family who are able and willing to help out at such times has to be the best possible solution. For those of us who don’t have such networks, play schemes and holiday activities would be a great alternative. In England, though, we don’t have the same culture of ‘camps’ as in, for example, the United States. Very few such opportunities exist and where they are available they are usually only for a few weeks in August and for limited hours. Furthermore, they are rarely (if ever) inclusive. Throughout his childhood Dylan was only ever able to access one play scheme, organised by a local parents group. He briefly attended a Saturday club but when that closed there were no other social opportunities appropriate to Dylan’s level of need in the city. For young people like my son, who present with complex needs in addition to autism, it is virtually impossible to secure satisfactory out-of-school care.

Healing May

last day of May 007In last week’s post I described how, earlier this month, I took Dylan for a short break in Scotland. Part of my aim in timing the holiday as I did was to give Dylan a bit of attention before the bulk of my marking was due. I knew that, for the rest of May, I would be juggling caring with marking. It seems to have helped a bit; I’m almost half way through my marking now and the process does feel a little easier than in previous years.

That wasn’t the only reason for the timing though. If you work in a sector where there are specific pressure points in the year it is possible to have your head so far down you can no longer see. This year I didn’t want to miss the blossom; I wanted to make room in my life for May. I like to think that, as well as signalling a fresh approach to marking and caring, this indicates a sense of healing. For here is another reason why May can seem the cruellest month: it is when my mother died. I suspect that since her death, in 2006, part of me has been prepared to miss May, while I marked, in order to avoid painful associations with the time of year.

My most recent collection, A Dart of Green and Blue, opens with a sequence of poems which track my grief in the aftermath of mum’s death through a period of nine months. In the following poem, which is located early in the sequence, I repeat selected words (including May/may) to represent the way in which the bereaved can get stuck at the moment of death but also want to hold on to it in order not to forget.

May

Everything slow this year. Heavy and green with rain
hawthorn hung stubborn, withholding the May.
At the edge of my distracted sight I may
have caught the vaguest sign of change the day
she died. But it was the next day
(the 4th) I woke to an absence of rain.
Cruel – indifferent – the sun rose again
and, as if spring were remembering itself again,
buds opened. Even the wisteria she’d said may
not flower threw clusters of blue jewels. All day
I thought: She’s missed it. It’s too late. Last May
we walked the hedgerows on the Edge. The rain
had drawn the hawthorn’s musky scent that day:
brings death, I’d thought, as I broke a branch of May.

*

last day of May 009Grief, somebody once told me, involves the reconciliation of the fear of forgetting with the pain of remembrance; eventually we realise that we will never forget but that it no longer hurts so much to remember. This year I am trying to celebrate May by remembering my mum and the way she helped me to love this time of year as a child. I hope that, as well as getting my marking done, I am finding time to teach Dylan how to love May too.

References

Elizabeth Barrett (2010) ‘May’ in A Dart of Green and Blue. Arc Publications
T.S.Eliot (1922) ‘The Burial of the Dead’ from The Waste Land. Faber and Faber
T.S. Eliot (1944) ‘Little Gidding’ from Four Quartets.  Faber and Faber

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

 

The Bat Detector: marriage, autism and divorce

The Bat that flits at close of Eve
Has left the Brain that won’t Believe.

William Blake, Auguries of Innocence

bat11In this week’s post I shift the emphasis from the child to the parents. Based on my experience of supporting Dylan I suggest that ‘dialogue’ and ‘space’ are crucial to carers but can be difficult to prioritise. The pressure on relationships of raising an autistic child  is well-documented and it is frequently suggested that the divorce rate for couples with an autistic child is significantly higher than for others. I revisit these assumptions and reflect on the relationship between autism and my own divorce.

Supporting the Sole Carer

In the 17 years since my son was diagnosed as autistic I have faced many challenging situations but by far the most stressful has been Dylan’s transition to adult services. Despite spending a huge amount of time and effort trying to get this right, when Dylan left school last summer I had still not managed to secure a placement for him. As well as worrying about the potential impact on Dylan, as a single parent who needs to work full time I became increasingly anxious about how I was going to return to my job after the summer. In August, experiencing feelings of frustration and helplessness, I decided to see a counsellor.

bat3As a single parent I’ve found counselling useful in the past as it provides me with a space for reflection and review. One of the things that I can miss, as a lone carer, is somebody to mull things over with. Without such dialogue my decisions go unchallenged and while that may be empowering in some contexts in other situations it is scary. Making decisions about a child’s future – especially a disabled child – falls, without doubt, into the ‘scary’ category. Although there are good friends and willing listeners in my life, I try to protect these relationships as much as I can from the endless and often circular debates I have with myself about Dylan’s care. Talking to somebody neutral, I hoped, might help me to identify new ways of thinking about a stressful situation.

Although Dylan’s day care still isn’t completely settled the situation is much brighter. I have some interim provision in place and I have been able to get back to work. Life feels like less of a crisis and more the struggle and juggle I am used to. I still have some of the free counselling sessions I am entitled to (through an employer scheme) remaining and the other day I was chewing over some of my continuing dilemmas about Dylan’s care when the counsellor interrupted: “just a minute. Where are you in all this?” I seemed to spend so much time walking in Dylan’s shoes, she observed, that perhaps I’d forgotten where I’d left my own? “Where is your voice in this process?” she asked. This was one of those moments that make the effort of counselling worthwhile; a question I wouldn’t have asked and that stopped me in my tracks.

bat10I always argue that when I try to see the world through Dylan’s eyes I am learning about myself as much as I am learning about him. The time I spend walking in Dylan’s shoes not only helps me to understand his world but alters the shape of my own feet. I am constantly stretching and shrinking and distressing and polishing my shoes, depending on what I’ve learned from wearing Dylan’s for a while. Perhaps if I sometimes forget where I’ve left my own it’s because they don’t fit anymore. But I admitted to the counsellor that it was easy to be absorbed by this process. While I had set up a blog with the intention of writing from the perspective of a carer, for example, my posts often wandered into Dylan’s world. I reflected on a recent blog post about language in which I had reported Dylan’s attempts at speech but erased my own voice from the conversation completely. Could it be the case that in order to give voice to Dylan I had to silence my own?

Making Space for the Carer (In and Out of Marriage)

Since then I’ve been reflecting on the importance of space to carers. In particular, I’ve been asking myself whether it’s always harder to protect personal space if you are a sole carer, or whether all carers, including couples, find it difficult to keep a separate space for themselves. Perhaps inevitably I’ve been comparing my recent years as a single carer to my earlier experience while married, and I’ve contrasted my own experience with my outsider observations of others.

bat8One memory I keep having is a vignette from last summer. In this memory I am watching a family with a disabled child waiting to disembark from the ferry as we arrive in France. It has been a long crossing and it’s late afternoon. Their child is younger than Dylan – maybe ten – and clearly tired and fed up; he is hanging heavily from his father’s arms, knees buckling in protest, as we wait in the stairwell for the doors to the car deck to open. My attention is taken by the child’s parents. They are staring silently ahead at the metal doors, as if willing them to open. They don’t speak or look at each other. I think I recognise the dynamic between them of the exhaustion of one parent feeding the exhaustion of the other. I remember to myself how couples can sometimes mirror each other emotionally and aggravate rather than relieve difficult states of mind: frustration, anxiety, tiredness. I imagine to myself that they have become temporarily locked together in a negative space and in that moment I feel glad that I am alone with Dylan. He is tired too and impatient for the doors to open. I am anxious about the drive ahead of me. But at least I can’t drag down anyone else or let myself be dragged down by this; alone, perhaps, there is a space into which I cannot let myself fall?

bat5I’m not being smug about being single; I realise this is only a part of the picture and that on the other side of the coin there’s sharing and support. I know a number of families living with autism where the parents have stayed together and are a terrific resource for each other and for their child. Clearly this is the best of situations. For a long time I believed that, statistically, these families were the exception rather than the rule. I once read that 95 per cent of marriages affected by autism end in divorce and the figure of an 80 per cent divorce rate is regularly cited in the literature. At various times I’ve looked for the source of these statistics (which seem high to me) but have never been able to verify them. When I’ve mentioned these data to friends who are living with autism, however, they’ve never expressed surprise. My lived experience would also tend to bear out a higher than usual divorce rate among parents of autistic children.

Data from recent studies suggests that the divorce rate among families with autism is not as high as has previously been thought. In 2010 a US study claimed that 64 per cent of parents with an autistic child stay together, compared to 65 per cent of couples not affected by autism (Freedman, 2010). This claim to almost negligible difference in divorce rates is not borne out, however, by another study conducted the same year (again US-based) which suggested a divorce rate for couples with an autistic child of 24 per cent compared to 14 per cent for couples without an autistic child (Hartley, 2010). I haven’t been able to find any data for the divorce rate among couples with an autistic child in England and Wales but the overall divorce rate was running at 42 per cent in 2012 (Office for National Statistics). Although we cannot extrapolate directly from the US studies to the UK, it seems fair to suggest that while the divorce rate for families living with autism in the UK is unlikely to be as high as has previously been claimed, it may well be higher than for families who do not have an autistic child.

bat7Hartley’s study of divorce rates in the US suggested that the differential between families with and without autism may be explained by the higher prolonged risk of divorce faced by families living with autism (Hartley, 2010). While all marriages face a certain amount of stress when children are young and dependent on their parents, it is suggested, this usually reduces as children reach adulthood, and marriages which have managed to survive the early years are then less at risk of ending in divorce. By contrast, the stress on families living with autism often continues as the autistic child becomes an adult; where the person with autism continues to be dependent on parental support, stresses on the parents’ marriage also continue.

The implications of this seem to me to be clear. Families make an enormous contribution to the well-being and flourishing of people with autism; as well as the economic commitment of, for example, personal support and housing, they make a  lifelong emotional investment. But this can come at a high cost to the health and well-being of carers and families (in some tragic cases extracting the highest cost). If, as the research suggests, the toll taken on some families takes place over the long term, surely as a compassionate as well as rational society we should provide continuing support?

The Rock of Values

bat9I’m aware, of course, that not all marriages where there is an autistic child in the family need this support – and, indeed, that not all couples could be helped by this. Dylan was ten years old when my husband and I divorced which makes my marriage an early casualty rather than a result of prolonged stress. While my marriage wasn’t a casualty of autism directly, I do believe it played a part; for some people it is perhaps not the long-term stress of autism which weakens a relationship but the stresses which it exposes. Having an autistic child, I would suggest, challenges us at a very fundamental level; it requires us to reflect on what it means to be human and demands that we examine our core values. The aftermath of an autism diagnosis – not unlike bereavement – invites us to inhabit some dark places of the spirit. For me this involved a radical review of how I had lived my life and what was important to me for the future. Having an autistic child was certainly not an experience I was going to survive unchanged.

In an earlier post about diagnosis I referred to ‘Ordinary People’, a film which focuses on the response of grieving parents to the death of their son in a boating accident. The film explores the different coping mechanisms of the father and mother and the way in the months following the accident they become increasingly estranged. As the family falls apart the father follows his son into counselling; acknowledging the impact of the bereavement on the family, he tells his wife that he is no longer sure he knows who she is or whether he loves her anymore. By the end of the film, the marriage has broken down. Perhaps, the father tells the counsellor, they would all have been OK if the boating accident had never happened. They had been happy before: a perfect couple, people had called them.

bat6In a similar way I could ask whether, if my husband and I hadn’t been tested so fundamentally, we would have been OK. Perhaps, had life continued as we’d thought it promised, the differences between us would never have revealed themselves. But, as I would argue, autism challenges us at the core of who we are and exposes our basic values. In our approach to disability (medical to social model), selection of therapies (behaviourist to constructivist), choice of education and care, we reveal ourselves. Is it so surprising that in this process some of us should develop or discover things about ourselves or our partners that we hadn’t previously known? This is not in itself , of course, a reason for a relationship to break down. However, a realisation that you don’t share the same fundamental values as the person with whom you are trying to co-parent a child with autism may be. There is something about the nature of autism which demands engagement with our fundamental selves. Nothing else will do. It is on this rock of values, I would suggest, that partnerships can come to grief.

The Bat Detector

bat detector 001

Some years before my marriage ended, while Dylan and my daughter were still young, I wrote a sequence of poems using the metaphor of detecting bats to explore the ways in which communication can be disrupted or breakdown within a family living with autism. The sequence is focused on a period of time when my ex-husband was building an electronic box which would translate the sound of bats to a frequency which we could hear (bat calls are in ultrasound which the human ear can’t hear). It struck me as ironic that he was going to such lengths to hear bats when there were such profound obstacles to communication with Dylan, so I used the bat detecting as a metaphor for our relationship with each other and the silent child.

The opening poem in the sequence focuses on the failure of communication between a couple as the woman struggles to care for their small children while the man builds a bat detector. Although the sequence concludes optimistically with the couple finding new and creative ways of communicating with their son and with each other, the opening poem deals with the sort of issues I have raised in this post: the values of caring; support for carers; and a space away from the role of carer. Although the poem focuses on the female narrator’s need for space, it could equally have been written from the perspective of the person building the bat detector. The bat detector in the picture isn’t the same as the one in the poem; when my husband and I divorced, he got to keep the bat detector, and (years later) I bought myself this new – and improved – version.

The Bat Detector

At the weekend you audit the parts –
list resistor, capacitor and circuit board,
order pieces of kit on the kitchen table,
collect screwdrivers and knives.
You are building a Bat Detector –
a Magenta Mark II with built-in speaker
and volume control. Straightforward assembly –
some soldering, cutting and drilling of holes.

You show me the leaflet; point to a picture
of a small plastic box with two dials,
one marked with kHz, and tell me how different
species register on different frequencies –
that our ears hear only as high as 20,
but above that, in a band of ultrasound,
we will find the call of Pipistrelle, Horseshoe,
Daubenton’s and Natterer’s bats.

Our detector will convert these calls for us.
We will hear them chatter at dusk, before
the roost, pick up the din of their ‘feeding buzz’.
We will hear the high-pitched squeak of baby bats
calling for their mother. You are absorbed by this –
work all afternoon drilling the casing,
soldering resistors and chips on a copper circuit,
manipulating tweezers to thread thin wire.

I stumble, clumsy, through the house
collecting toys and nappies. I heave and sigh.
I wash the pots and stir the saucepans,
fiddle with exhausted pens, a late assignment.
I break and snap. I play peek-a-boo, show
the children how to match their shape blocks,
push them through. I retreat to the attic, hang
upright by my thumbs. I need support from you.

We have a child with two year’s worth of words
and another, older, who does not understand
the social order, cannot play or speak.
You are fixing frequencies on your box –
tuning us out, neglecting to hear your son’s squeak.
You are adjusting your volume control, turning
down the side of me, wailing on long wave –
pitching my 20kHz calls down the stairs.batdetector

References:

Barrett, E. (2005) ‘The Bat Detector’ in The Bat Detector, Wrecking Ball Press

Freedman, B.H. et al (2010) ‘Relationship Status Among Parents of Children with Autism Spectrum Disorders: A Population-Based Study’ International Meeting for Autism Research

Hartley, S. L et al (2010) ‘The relative risk and timing of divorce in families of children with an autism spectrum disorder. Journal of Family Psychology, 24 (4) 449-457

Sources of bat images unknown but appreciated.

Walking On Tiptoe: reflections on diagnosis

Recently I was booksinterviewed for Spectrum, a magazine aimed at parents and professionals supporting people with autism. The reporter asked questions about Dylan’s diagnosis which required me to recall events from 17 years ago. Here is part of my reply to ‘When did you notice the first signs of autism and how was Dylan diagnosed?’

“As well as a proneness to being unsettled, Dylan wasn’t showing any interest at all in language or toys. He didn’t play with his things, but rather sorted them out  and organised them. And even at a very young age he had a fascination for moving lights and sound, for example from films or the television. He was also quite rigid in his food preferences and had  some strange rituals with his foods and behaviours.  I didn’t piece any of these things   together initially – I didn’t know anything about autism really – but I did notice them. Once he was up and about on his feet, I also noticed that he had a strange lop-sided gait due to walking on his tiptoes. I remember pointing it out to the health visitor at one of his check-ups – ‘look how he walks on his tippy toes’ I’d said. Later, this became the crucial bit of information – the last piece of the jigsaw if you like.”

All of the above observations about Dylan’s behaviour at two years old continue to be true of him at 19, with the possible exception of the toe-walking, which I don’t see him do so often anymore.

*

Being asked questions about Dylan’s autism diagnosis years after the event felt both strange and familiar. When Dylan was diagnosed I found myself riding the merry-go -round of questions which will be familiar to any parent of a child with a serious illness or disability. In those initial weeks we attended appointment after appointment with multi-agency professionals in children’s services, all of whom asked the same questions, more or less in the same order. I remember how tired I became of repeating my answers over and over. The story became so well-rehearsed, some days I wasn’t even sure it was mine. There is a sense, I think, in which language and narrative can distance us from experience, and the more I had to talk about Dylan’s development, the more detached from my child I felt.

Being asked the questions again, years later, presented me with an unexpected opportunity. I knew that I had once had ready answers, but with the passage of time I wasn’t sure I could remember them, or whether I trusted them anymore. So I had to think again about how Dylan had been diagnosed, and I found that process helpful; the ‘recovery’ of memories from many years before, filtered through my subsequent experience of caring for Dylan, offered a fresh way of organising my understanding of our (i.e. mine and Dylan’s) life histories. In this process, even the rigidity and lack of change which has been part of  Dylan’s autism could be transformed, in that I could view it differently and so respond differently to it. This reminds me, again, that it is easier, and often more effective, to make changes to ourselves than to others.

*

One of my all-time favourite movies is Ordinary People, directed by Robert Redford and starring Donald Sutherland and Mary Tyler Moore. Moore and Sutherland play a married couple dealing with the loss of one of their two sons in a boating accident. The film is a marvellous study of grief and the way in which it affects each of us differently. Some of the most moving scenes involve the surviving son, Conrad, as he struggles to come to terms with his feelings of guilt and inadequacy, but it is the mother’s response which I find most compelling. Tyler Moore brilliantly depicts a woman retreating into a world of routine and order, making lists and lining up cutlery in drawers, refusing to engage with unplanned or unpredictable activity or emotion. For this character, the only way to deal with chaos is to order the things she is able to control: knives, spoons, forks.

An autism diagnosis has sometimes been compared to a death and when the reporter asked me how I responded to Dylan’s diagnosis I made reference to this: ” I suppose”, I said, “I went through the stages used to describe bereavement: shock, denial, anger, grief.  I was also plagued with low-level infections for about two years following the diagnosis: a cough I couldn’t shake off, insomnia, and later the recurrence of some tumours I’d had removed years previously. So the diagnosis took a toll on me physically as well as emotionally.”  Years later, I’d say that I’ve learned a few things from the mother in Ordinary People as well.

*

I sometimes catch myself feeling frustrated that I’m working on the same things with Dylan as I was when he was a toddler. Here are some of the things I say quite often:  Don’t put that in your mouth Dylan; Dylan, just try it – you might like it; just eat the macaroni cheese Dylan – don’t do that with it; Dylan, can you open your eyes – look at me please; Dylan, keep your arms still please. These requests sound ridiculous when I write them down. How confusing it must be for Dylan to work out what the rules are about what you can or can’t put in your mouth or do with your body. But one of my roles as Dylan’s carer is to try and interpret the world for him so that he can move through it more safely and with less fear and confusion than he might otherwise. As carers we need resilience and patience to continue to respond to the things which never seem to change. And perhaps there is value to be found in rigidity? If I ask myself what the functionality is to Dylan of lining up DVDs or eating spaghetti on a Tuesday – and if I remember the Mary Tyler Moore character in Ordinary People – I think I can understand how such behaviours and routines help create order in what must seem a chaotic and unpredictable world. Perhaps the challenge for autistic people, and those who care for them, is to hold the competing forces of change and rigidity simultaneously, and creatively, in their lives – but then perhaps that’s a challenge for all of us?

*

While Dylan’s autism hasn’t changed significantly in the last 17 years, my response to it has. No doubt in the process of recovering memory I’ve forgotten some things that seemed important at the time but which have faded or which I’ve suppressed because they were too painful. Forgetting, I often think, is as important a part of survival as memory. Some things, though, I am unable to forget. Although I noted earlier that toe-walking is something Dylan does less of now, it was this behaviour that was of particular significance to me at the time of diagnosis. As a poet I sometimes respond swiftly to experience and I captured events pretty much as they happened at the time in the poem Walking on Tiptoe.  If I were to write a poem about Dylan’s autism diagnosis today it would no doubt be a different poem to the one below. While both the style and emotion of the poem seem very raw to me now, perhaps without the rawness there would be no possibility of transformation.

*

Walking on Tiptoe

That afternoon, a pale amber light lit the tops of the hills
as we drove home from work and I felt myself unfurl to greet it,
grow brave after months of darkness.
I started to talk about him that evening while you chose a video
and the new baby kicked on the rug.
There was just something that didn’t feel right.
I could live longer without words, if it was only that,
but there were the cars which he clutched
and the things which he moved, backwards and forwards,
the route home from work which couldn’t be changed.
I asked you to get down the medical dictionary
and said:  Look up Autism, read me that.

In a strong steady voice you read to me from the living room
while I moved quietly around the kitchen, making his tea.
I listened vaguely to the symptoms and signs,
thinking yes and yes again, but not really engaging –
knowing the same could be said of all two year olds –
don’t want to look, don’t want to be picked up, don’t want to play or talk.
So I wasn’t desperately listening to you – was busy with a saucepan –
when you read, without hesitation (as if the words had no meaning):
There may be other behavioural abnormalities such as walking on tiptoe…

No, No, No. The pan clattered against the sink.  You continued reading.
Backwards and forwards, I paced the kitchen, flapping my arms.
No need for more words.  Stop, Stop I yelled at you and you ran to me,
then, spinning on the spot, not knowing where to turn,
how to get back, back to where I was before.
I banged my wrists hard against the glass in the patio doors,
wailing No, No, No as the light went out of the sky.
Inside, the genie was out of the lamp.
But oh to be free I heard him say as my son sat,
trapped in the glow from the screen, fixed by the colours.
I turned myself to the hills, switched on the outside light,
stared at the garden.

Later, when you understood, you smashed your fist against the wall.
The switch cracked from the bottom corner to the top right.
The next day you unscrewed the fissured plate; fitted new parts, fixed it up.

*


Reference

Barrett, Elizabeth (1998) ‘Walking on Tiptoe’ in Walking on Tiptoe, Staple First Editions