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

 

13 thoughts on “Poetry And Postmen: a parent’s journey through autism

  1. Hi Liz I belly laughed at the scene you described where your postman interrupted you doing a spot of research on your kitchen floor. Hilarious! I hadn’t realised before but I can see that I have become an ethnographer. I’m sure most parents of a child with autism will have practiced this discipline too. Once you have gained a better understanding of the life and world of your child you become a kind of intermediary and I know this is how I have earned Ian’s confidence and trust. Also, by showing a willingness to bring in the habits and environmental calms which constitute his requirements for a ‘good day’, I have at last become a trusted friend. The use of Dylan’s voice in your poem enhances the feel of a child at play. I can feel his excitement; his need to create order and brush over the messy (people) bits. Your reflections on the when and perhaps the why your poems were composed really help my enjoyment of the poetry. All authors should try this. By the way, I must thank you. I was initially troubled when I realised I had inadvertently left my user name on my last post, but was reassured when you said you liked it Now I don’t mind if it happens again.

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    • Hi there – glad me playing with the cars made you laugh 🙂 I’m pleased that you can recognise yourself in the ‘ethnographer’ role – it was my hunch that this is how lots of parents behave quite naturally. I suppose I’m trying to find a language for describing what it is we do – to acknowledge the complexity of it. I think it took me a while to find my way to this ‘ethnographic parenting’ as I am describing it. Initially some of the things I tried with Dylan (which were popular at the time) weren’t particularly helpful – at least not in terms of my understanding him from the inside out. I like the idea of Ian’s ‘environmental calms’ – that’s a nice phrase. Glad the reflections on my poems help your enjoyment of them – it’s not something poets often get a chance to do so I’m enjoying the change. It’s helpful to me, as well, to really think about the poems and what I was trying to do. I understand your worries about your name – I’m not very skilled with technology and make some awful errors. My twitter account was hacked recently, purely because of my naivety – so I do understand that feeling of alarm that some personal detail might be showing… Nice chatting to you again! Liz

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  2. Never stop writing. Ethnography is key to understanding, and there isn’t a lot of understanding out there for autism. You say a lot of parents are ethnographers, but I’m not so sure that is true. Sometimes I think too many put their trust in “professionals”, whatever that may mean to them. I know it’s hard. But we can’t give away our power.

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  3. Thank you for the imperative to not stop writing. You are right. Some days it is hard won, but I try to write a little each day. I’m really glad that you understand what I mean by ‘parents as ethnographers’. You’re probably right that too many of us put our trust in ‘professionals’ rather than in our instincts; I suppose I’m trying to claim some professional power for us as parents, and to suggest that our methods can be as rigorous and systematic as those used within research. I think I was trying to find a ‘theory’ underneath my practice so as describe and understand it better. Something like that. Perhaps it is easier for us to resisting professional orthodoxies if we have a language for what it is we do? I wish I’d had that when Dylan was younger…

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    • Professionals are listening to you Liz. At least I hope they are. It is wonderful you mentioned Sonrise. I read Barry Neil Kaufmann’s book at the advice of my beloved aunt Dorothy when Ben was first diagnosed with PDD.

      It was a lot harder than she made it sound!

      I think sometimes science doesn’t see itself as an orthodoxy. (You use such wonderful, perfect words!)

      I finally came to wisdom with Ben. He is able to let me know he sees his childhood as a source of pain. But, unfortunately, in himself, not the way he was treated.

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      • Ah Sonrise! I couldn’t remember the full name. I have a clear memory, though, of visiting them while we were in Massachusetts staying with friends. It was such a welcome alternative; at the time people in England were getting excited by Nina Lovaas’ ideas which didn’t fit with my philosophy or make Dylan happy. So once I’d found Sonrise I built what I could from that for Dylan – though wasn’t a purist (as you say it is harder than you think to commit to!).

        I am glad for your wisdom, sorry for the pain. I wish D could communicate more easily how he feels about his life.

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