Autism And War: on being anxious and absent

Kent August 2012 084I grew up in England during the 70s and 80s in the era of superpower politics. It was a nervous time; as East and West squared up to each other the threat of nuclear warfare appeared real. Or at least that is how, as a teenager, I perceived the world.

During adolescence my interest in politics was both empowering and a source of anxiety. In the early 80s, under the leadership of Thatcher, Reagan and a trio of old guard Presidents of the USSR (Brezhnev, Andropov and Chernenko) superpower politics reached new levels of hubris. I feared that in a fit of pique a President or Prime Minister would press one of the buttons located (it was said) in Downing Street, the White House and the Kremlin. These, we were told, would launch the missiles which would trigger a global nuclear war.

wtwb wikipediaIf it’s a little hard for me to think myself back to that time now I need only remember the publication in 1982 of When the Wind Blows, Raymond Briggs’ graphic novel about nuclear war (later released as an animated film). This was followed in 1984 by Barry Hines’ Threads with its nightmare vision of a post-nuclear world; Threads would have the additional impact on my nervous heart of having been filmed in my hometown.

threads wikipediaThis climate affected me deeply; although my first love was literature I opted to study History and Politics at university. There I would meet others with similar anxieties. I remember in particular a friend who left his notebook in my room one day, open at a page on which he had doodled a mushroom cloud. We were in Boston, Massachusetts, in the summer of ’82. I can still recall his inscription beneath the picture: “I am afraid the world is going to blow up and I won’t see mom and J [name of his sister] again.” I felt uncomfortable reading his private reflection but took strange comfort from our shared fear.

The bunker

mine bbc.co.ukThe following summer the friend visited me in England. As well as spending time in London, where I was a student, I took him home to the Yorkshire coalfields where my Dad worked. The area would become the focus of fierce confrontations between the miners and Government as Thatcher embarked on a programme of pit closures the following year. In the summer of ’83, however, our concern was not yet with coal; our anxiety was still, predominantly, the risk of nuclear war. It must have been around this time that I had my first conversation with Dad about what we would do.

Dad, what will we do if a nuclear bomb drops? I mean, I know what will happen – but what would we do? Straight afterwards I mean?

Well now our Elizabeth it’s funny you should ask me that. I’ve asked myself the same thing.

miningartifacts.orgDad’s answer surprised me. I hadn’t realised that grown-ups had these thoughts too but Dad, it seemed, had a plan. At the first sign there was something wrong, he said, I should get home as quickly as I could. Then we would go together to the colliery where he worked. We would go underground. The mine shaft was deep and the tunnels extensive. It would be the safest place to be in an attack. Dad had thought it through. People who didn’t work at the mine would head there too, he said. There would likely be a stampede. We would have to be quick to have a chance of getting down. People wouldn’t stand politely in line offering their tallies (the metal tags used to clock miners in and out) for admission.

tally 001After this conversation we updated each other with our plans from time to time. I suggested that leaders would emerge; decisions would be made about who should get a place in the paddy trains. Maybe Dad would be seen as someone worth making space for; he was a Sparky so could be useful. I, meanwhile, didn’t have anything to offer. They’d need people with brains as well, Dad reassured me. And so I spent the rest of the decade making a note of the nearest mine (or tube station) and collecting literature on nuclear warfare.

Anxiety, adolescence and autism

war 003Looking back on those years it seems to me that what I, and other young people, suffered from was generalised anxiety. The perceived threat was constant but removed from our everyday lives; the idea of a finger on a button in some distant place, causing the release of something invisible but deadly, created free-floating worry. I don’t mean to suggest this is how I lived my each and every day; I spent more time dancing than worrying, happily. But anxiety was certainly part of my youth.

war 006If adolescence is a time of idealism and questioning, and if young people are vulnerable to anxiety about the future, then presumably the current climate is as scary to young people today as the cold war was to me. Current threats may feel less abstract than nuclear war appeared to those of us who came of age in the ’80s but this doesn’t reduce the potential for anxiety. I’ve had some opportunity, as an adult, to witness the impact on teenagers of accounts of war. Poetry from WWI continues to be a mainstay of the school curriculum in England while literature which focuses on the experience of women and children is a popular approach to teaching young people about WWII (Ann Frank’s diaries for example). I have seen some young people break down when encountering these and other accounts.

brave pixar.wikiaIn my last post I raised the issue of how and what we tell autistic people about war. Dylan’s learning disability is significant enough to affect his ability to engage with the concept intellectually. As he is also lucky enough to live in a place where he doesn’t have direct experience of war, Dylan’s knowledge is limited to the few films he watches which include battle scenes (Lord of the Rings, for example, and Brave). Recently, during a meeting to discuss changes in Dylan’s behaviour, a psychologist suggested that Dylan may find it difficult to separate fantasy from reality. If he is watching a DVD in which a human is swallowed by a whale, she said, or a boy grows ears like a donkey, then Dylan may be anxious that these things could happen to him. Perhaps, she said, Dylan’s distress is caused by increased anxiety as he tries to make sense of the world through older eyes.

It was interesting and useful for me to hear this. Perhaps I should have realised before. Dylan may be autistic with a learning disability but he is probably still experiencing some of the anxiety which I felt at his age, albeit differently triggered. I had speculated for a while that certain story lines in his DVDs may be the cause of Dylan’s distress – separation narratives such as a baby dinosaur losing its mother for example – but having watched Dylan viewing his films in the last couple of weeks I think fighting makes him anxious too.

The attic

threads sheffieldhistory.co.ukOne of my recurring dreams is set in a post-apocalyptic world. Over the years it has changed in detail but the context is the same: I am wandering in a familiar city, trying to get to a place of safety. I suspect I am not alone in such imaginings; along with falling, being chased and railway stations it is, apparently, a fairly standard dream. One of the things which interests me, though, is how the narrative changed after I had children and especially since I became a carer.

threadsshowroomworkstation.org.uk2These days my war dream is likely to involve a desperate attempt to save one or both of my children from various dangers. These may be natural disasters which I must survive by physical strength or danger from an enemy who I must outwit. Often, the situation presents itself as challenging because of Dylan’s disability. So in one version of my dream, for example, we are in a hiding place which requires us to be silent. I assume the source for this is Ann Frank’s diary with its account of hiding in an attic room; occasionally I use an extract from her diaries with students and perhaps the discussion emerging from these sessions triggers my imagination. In my dream, however, what becomes horribly scary is my inability to ensure Dylan’s silence.

sheffieldhistory.co.uk3This fear or not being able to conceal ourselves because of Dylan’s disability is a narrative which resonates with that of other vulnerable groups during wartime. As well as my concealment dream I have conjured night visions of pilgrimage, famine and siege, each of which presents particular challenges within the context of autism: being confined to the house, not being able to eat and having to walk somewhere unspecified would all be difficult for Dylan.

threads sheffieldhistory.co.uk2These narratives may emerge in dreams but I imagine they touch on a reality. If you are autistic a particular challenge of war, presumably, would be the breakdown of structure and routine. Meals would be an issue for someone like Dylan who eats only a limited range of foods in a specific colour. Potatoes would be a good option, I suppose, if we could find some. There would, of course, be no DVDs. That would be hard. No baths. No trains. No day centre. No going outside. While these examples may seem trivial from an everyday perspective, from an autistic perspective the loss of routine can represent a loss of self. For Dylan, routine is enabling and, I think, keeps anxiety at bay.

Actually, I find it very difficult to comprehend what would happen. I don’t know how someone autistic would survive a warzone. My dreams present me with these problems and unanswered questions again and again.

Where have all the autistic children gone?

And because of this I have made a point, over the years, of examining newsreel footage from war zones and scenes of natural disaster. Where are the autistic children I ask myself? They never seem to be in camera; the silent children waiting patiently in line for food rations, or sitting quietly in the corner of a makeshift shelter, do not remind me of my son. The mothers the reporters interview do not refer to the difficulty of managing with an autistic child to care for. I cannot believe that it is because autism doesn’t exist in these places. Are they lost or just out of camera? Where did they go, the autistic children?

AleppoeyewearA couple of weeks ago my attention was caught by a trailer advertising a radio drama, The Boy from Aleppo Who Painted The War, based on a novel of that title by Sumia Sukkar  (Eyewear Publishing, 2013). The story follows the experience in war-torn Syria of Adam, a boy with Aspergers Syndrome. Given my longstanding curiosity about the absence of autistic children from media accounts of war, I listened with interest to this fictional representation. Perhaps it would provide an answer and an ending to my dreams?

In my next post I will review the radio production…

 

 

Images:

  • The photograph of Soviet Submarine Classes was taken by me at Dungeness Lighthouse in Kent. I also took the photographs of an Orgreave miners’ tally; a Government information leaflet and an anthology of WWI poetry. 
  • The images for When the Wind Blows and the Threads DVD are from Wikipedia
  • The image from Brave is via Pixar.Wikia.
  • The images of mines are from the BBC (pit head) and miningartifacts.org (underground)
  • Scenes from Threads are used in ‘The attic’ section of this post: these are from sheffieldhistory.co.uk except for the traffic warden who is via showroomworkstation.org.uk (Sheffield’s wonderful independent cinema).
  • The image of the Sumia Sukkar novel is via Eyewear Publications.

 

Autism And Remembrance: Mozart and poppies

bbc.co.uk poppiesAlthough I’ve grown accustomed to not being able to do certain things, every so often frustration catches me out. I suppose other carers have something else they dream of doing: clothes shopping, perhaps, or leisurely lunches. I can live without those as it happens.

If I find myself frustrated it is usually over an arts event; the exhibition I can’t get to or theatre production I must content myself with reviews of. At the moment my head is turned by Paul Cummins’ installation of 888, 246 handmade ceramic poppies at the Tower of London (not simply an ‘art event’ I know). A colleague who visited last weekend showed me pictures on her mobile phone; it was heaving, she told me.

I know that Dylan wouldn’t cope; I have only taken him to London once before and although it was a success it would be no preparation for thick crowds at the Tower. Besides, the poppies would have no meaning for him. Actually, that’s not the case: the poppies may not have the same historical and cultural relevance to Dylan as to me, but I cannot claim they would have no meaning for him.

Even so, I cannot contemplate a trip to London with Dylan, particularly with visitor numbers set to rise on the run up to Remembrance Day and given the anxiety Dylan has been experiencing in recent months. I have pored over my diary looking for a Dylan- and teaching-free slot long enough for me to get the train to London and back alone, but it’s no go.

Against forgetting

DSCF1549I had forgotten until yesterday that I took Dylan to a poppy service last year. Although I had edited the experience from my memory I have a habit which means I can never let myself forget entirely. As a long-term diarist I have records which stretch back years. Something I have done for some time now is use the previous year as a touchstone for the one I am living. So as well as writing an entry for 11th November 2014, for example, I will look back to see how I lived on 11th November 2013. So yesterday morning I flicked back to see what Dylan and I were doing this time last year.

The poppy service we attended had been advertised as ‘inclusive’ but it wasn’t a success, at least not for us. My account of the visit (which I reproduce below) is not a narrative version of the experience; my diary entries tend not to take this form. Instead I free-write impressionistic pieces. Often, as is the case here, they draw on a variety of voices. In my account of the poppy service you will hear the voice of the church leaders and people with learning disabilities as well as my own voice and that of an omniscient narrator.

Poppy (11/xi/13)

The dark circle, he said, is the evil in the world; the bad things which we do. He showed pictures of tanks and soldiers with guns. Cartoon characters squaring for a fight. Hurting each other. Making people cry. These are the evil things. This is the dark circle. Stand here in the middle of the room, M, and hold this black circle.

Now what are these? he asked. These petals of blood remind us of Jesus, he said; that he loves us all, even you shouting for WW3 and echoing back words. Even you with a blank look and the boy looking through books instead of paying attention. Even you he loves.

Now I see that you are not wearing your poppies. Come here and hold this one. Look at it. Don’t peel the back off yet. Hold it in your hand. Look at it. Those are tears of blood.

Who is this on the screen? ‘That is him! That’s him!’ one man cried.

A reading

2014-08-05 16.09.53In the above account Dylan is the boy looking through books; these were located at a distance from the group. Dylan’s exclusion was partly due to the lack of adjustments made to the service : the chairs were arranged formally and proceedings were conducted through spoken language, with the balance  towards instruction. Signed hymns and projected images were the only attempts to enrich communication.

It’s easy to be critical of course.  The church was working with what it had access to in terms of space, resources and expertise. Church leaders are attempting to meet a need in the community and the group may well be valued by its regular members. I suspect that it wasn’t really aimed at someone on the autistic spectrum and the issues I am raising may be more about that than inclusion generally. I’m pretty sure, however, that the things which would have engaged Dylan might have appealed to others too.

Making a giant poppy out of tissue paper. Rattling poppy seed pods. Music and movement as a field of poppies. Simple memory games. Remembering someone you loved. Saying thank you.

guardian poppiesIt appeared hard for the people there – adults with learning disabilities – to sit and listen. Surely we can bring active methodologies from schools and adult learning centres into an inclusive church? The concept of the sermon may underpin religious practice in many faiths but it is an approach which needs to be re-thought if we are to include people from across the community. Perhaps this is already happening in some places; I imagine churches may grow and adapt to the needs of autistic children whose families are already members (much in the way families themselves do).

My discomfort at the service Dylan and I attended was not just about methodology, however; I was as troubled by what was said as by how it was delivered. I found the focus on ‘good’ and ‘evil’ difficult, for example, and I was aghast at the images of toy soldiers. How might Dylan and others make sense of Toy Story’s role in this I wondered? The narrative offered made a dark connection with personal life; I was disturbed by the attempt to link ‘bullying’ (as an example of evil) with Remembrance Day. I watched people shift in their chairs; this ‘making concrete’ was, I suspected, painful and confusing for some people in the congregation.

Although there were questions, the concepts were complex. I felt uncomfortable that people with a learning disability were being set up to fail with questions they couldn’t answer; although I’m sure this was not the intention, it felt patronising. Am I reading too much into this? It’s possible. But I have learned to trust the intuitive judgements that Dylan makes and his reaction was to distance himself.

Inclusive faith

Inclusion is more than the arrangement of furniture or use of Makaton; it is about attitudes and philosophy. For me this means ensuring Dylan feels safe, that his needs are considered and that his ability to contribute is assumed. I think these are inter-related in that Dylan feels comfortable where he can sense he is valued and his confidence increases when he can engage. The inclusive poppy service which I took Dylan to last year was not as inclusive as I had hoped in this sense.

There was of course another, more literal, way in which the service wasn’t inclusive; it was a special event, aimed at people with learning disabilities. I am not uncomfortable with separate provision although I understand why some autistic people, parents and professionals argue against this. Dylan attended a National Autistic Society school until he was 19 and he flourished and was happy there; in my view this was the appropriate education setting for him. So I’m not averse to taking Dylan into a specialised setting if I think it might benefit him.

So why did I take Dylan to an inclusive service?  Because recently, as Dylan has moved into adulthood, I have been thinking about ways I can create circles of support around him. I want to help Dylan find his own place in the community, separate from and beyond his relationship with me. Although I am not a regular church goer now, I was as a child. I was aware while my children were growing up, therefore, of the absence from their lives of something which had been an important part of mine. Joining a church seemed to me to be something which Dylan might benefit from now and enjoy; a church community for people with learning disabilities would, I hoped, be a safe and enabling place where Dylan could feel valued.

Mozart

ulm 002Although Dylan didn’t attend services as a child he developed a special interest in churches. I think this is partly because of the acoustics and the effect of light through glass (I have written about this here). Dylan also seems to share with others on the spectrum a draughtsman’s perspective; architectural features such as stained glass windows, bells, steeples and gargoyles are among his special interests. Unfortunately, the church where the inclusive service was held did not have such features; perhaps Dylan buried his disappointment (having been told that we were ‘going to church’) in those books.

After I read last year’s diary entry, however, I remembered that we had once attended a service at a church with bells and a steeple. We were in Knaresborough for the weekend and were walking back to our hotel on the Saturday evening when my attention was caught by a flyer advertising Eucharist at St John the Baptist the next morning. The setting was to be Mozart’s Coronation Mass, one of my favourite pieces.

Knaresborough 038I spent the rest of the evening thinking about the service. I couldn’t take Dylan, surely? I pondered the logistics and possible scenarios and outcomes. No. It was ridiculous. There was no way that Dylan would sit through the service. And yet I couldn’t bring myself to give up entirely on the idea. I went to sleep that night promising myself that I would do nothing to make it happen, but if Dylan woke on time, and we happened to be strolling by at 10.30am, and if the crowd didn’t appear too overwhelming and somebody smiled at us, and if there were two free seats at the back – well maybe.

And so it was that Dylan and I found ourselves next morning at the entrance of the church. As one of the  wardens welcomed us I explained, simply, about Dylan; he might shout out, I said, but we’ll leave if need be. ‘Oh Jesus won’t mind a bit of noise’, the blessed warden replied. ‘Though I suppose Mozart might’, she added, as we took our seats.

That is him! That’s him!

The service lasted two hours. I would never have imagined that Dylan could cope but he was brilliant; he stood and sat and stared upwards at the stained glass. I listened and sang and supervised. Afterwards, several members of the congregation made a point of welcoming and congratulating us as if realising the extent of our achievement.

Knaresborough 036I imagine that the attraction of churches for Dylan is to some extent their familiarity and dependability; he enters churches to search for something that he knows he will find. What Dylan took from the service at St John the Baptist, perhaps, was a sense of connection; as well as recognising features of church architecture he witnessed community spirit. This process of recognition is, I think, part of belonging.

And now I remember that what redeemed last year’s poppy service was one man’s joyful shout of recognition: he had seen that face before and was comforted. It was the man who doesn’t mind a bit of noise.

Images:

Images of the poppy installation at the Tower of London are via the BBC (the Tower) and The Guardian (individual ceramic poppies).

The other photographs were taken by me outside the Church of St John the Baptist in Knaresborough, at Osborne House on the Isle of Wight (poppies with lavender), at the Yorkshire Sculpture Park (single poppy) and at my local allotment gardens. The architect’s drawing of Ulm Cathedral is a section from one of Dylan’s favourite pictures; it hangs in the corridor outside his bedroom and I often find him standing by it, looking intently.

*

p.s. some of you may have noticed my name has changed from Liz to Elizabeth on here.  You can still call me Liz though. The reason it has changed is that I set up another blog (poetry-focused) and changed my name there as I publish  under the name Elizabeth. WordPress seems to have changed me to Elizabeth everywhere – so much for my attempt at fragmented identity :-)

 

 

The Little Mute Boy: autism in translation

diaries 014I am against the tide where diaries are concerned; others may extol the benefits of outlook calendars and virtual assistants but I am committed to paper. In particular I am loyal to Redstone Diaries with their themed text and imagery. The annual transfer of information from diary to diary could be considered a faff but I enjoy the ritual, like adjusting clocks or baking a Christmas cake.

In last week’s post I reflected on the way we keep some poems as talismans, pinned to walls and notice boards. Changing diaries this week I found such a charm poem taped in my old one.

The Little Mute Boy

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

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

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

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

The poem is by Federico García Lorca (1898-1936) a writer who has been important to me in recent years. I didn’t always care for poetry in translation; sound is as integral to a poem as meaning and I wanted poetry in its first language. But then, four years ago, a Lorca translation saved me.

 Córdoba             

diaries 007I was in deep grief; not over Dylan, this time, but my daughter from whom I had been suddenly separated. My ex-husband had failed to return her following an access visit and for two years I had no news from or about my daughter (I’ve referred to this a little in a previous post). Unsurprisingly the period had (and continues to have) a huge impact.

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

diaries 006A poet friend, gently concerned, gave me a copy of Robert Lowell’s Imitations for Christmas that year. I might find reading poetry in translation helpful, he suggested, as it would engage my heart and mind differently. Soon after, he called round again, this time with a Lorca poem in the original and translation. My friend was taking a Master’s course in poetry and one of the exercises he had been set was to produce a version of the piece. Why didn’t I have a go too? If I could experience the poem without thinking too much about what it communicated then I might find I could catch its rhythm; perhaps the spirit of the language could restore me to sound.

 Canción del Jinete  /  Song of the Horseman

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

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

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

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

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

moonThat Christmas I read Lorca’s Horseman. Its melancholic rhythms and slow pace (in spite of that horse) appealed, but it was the moon which caught me. I remembered my Grandmother telling me when I was away from home: look up at the moon and remember I’ll be looking too. I knew my daughter had, in turn, heard this from her Grandmother. Perhaps this moon, passed down the spindle side of the family, was my song.

fall (my gone daughter)

dearest beloved 
grain moon     our same moon

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

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

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

falling leaf moon       our same moon
dearest beloved

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

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

The cricket

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

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

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

El Niño Mudo

diaries 004El niño busca su voz.
(La tenía el rey de los grillos.)
En una gota de agua
buscaba su voz el niño.

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

En una gota de agua
buscaba su voz el niño.

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

 The sky is,

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

IMG_1477Le Ciel Est, Par-dessus le Toit

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

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

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

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

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

 On the road

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

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

 

IMG_1513The Sky is, Above the Roof

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

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

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

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

References

Road art, and photographs of the road art, are by my daughter. Except for the moon (source unknown but appreciated) the other images are by me.

 

IMG_1505

 

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

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

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

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

The Caul

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

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

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

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

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

The naming

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

~ The Return, Algernon Charles Swinburne

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

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

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

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

Merman

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

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

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

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

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

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

Elemental

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

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

The Sea Boy

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

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

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

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

material literacy 004The Sea Boy

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

Walter De La Mare

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

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

References:

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

Images:

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

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Reasonable Adjustments: working and caring

May 011I went back to work recently after having some time off sick at the end of the summer. I had an infected ear as a result of Dylan’s attempts to remove it and stress-related symptoms which made it hard to concentrate. Previously I’d managed the demands of being a carer alongside a full time job but last month I knew I had reached my limit. I had never had a sick note before: what do I do with this? I asked my General Practitioner.

I’ve almost caught up at work. It helps that Dylan has been generally calmer in the last few weeks; although there have been occasions when he has become distressed, I’ve managed to head off potential incidents. Being able to predict the signs, and having some strategies for settling Dylan, help me feel more confident. I wouldn’t say things are alright, but I’m treading water not drowning.

The cost of adjustments

2013-11-30 16.39.46Dylan may be calmer due to some of the changes I’ve made in his care. One intervention which seems to have made a difference is removing high-sugar foods from Dylan’s diet (I have written about this here and here). This change has come at a cost, however, as implementing it sensitively has meant the removal of some of Dylan’s favourite routines.

Dylan was in the habit, for example, of going to Costa for a piece of millionaire’s shortbread following a weekly trip to the library. Because this routine was embedded, in order for Dylan not to have the cake I have had to remove the library visit from his schedule. Another activity which has had to stop, at least for the moment, is the cinema. When I first started taking Dylan to the cinema I used sweets as rewards for appropriate behaviour; as the habit of buying sweets continued, if I don’t want Dylan to have them (because sugar seems to trigger aggressive behaviour) it means no cinema visits either.

Kent August 2012 171As well as changing Dylan’s routines I have had to adjust the way he accesses the community. While previously I would take Dylan most places, providing I had a back-up plan, there are now some activities I wouldn’t attempt alone. My new risk assessment has to involve a consideration of how I would protect Dylan and myself, as well as members of the public, if Dylan became distressed. Because of the changes in Dylan’s behaviour he now receives 2:1 support in respite care and has access to a team of staff at his day centre; quite simply I can’t provide this level of support at home.

There is no doubt that this has reduced Dylan’s quality of life. I do still take some risks – Dylan is an active young man and weekends would be impossible if we never went out – but mostly these have paid off, thankfully. A few weeks ago for example, at the height of a crisis, I took Dylan tandem cycling: I figured once he was in the saddle he would put his energy into pedalling. We made it up the hills quicker than usual that day.

Four Days

The adjustments to Dylan’s care carry a cost for me too. While looking after Dylan used to be relatively low key it now requires my constant focus. Evenings and weekends are no longer a rest from work but rather my busiest times. I have always regarded caring a full-time responsibility but since June it’s felt like a full time job.

limitsFortunately, as it turned out, I’d negotiated a reduction in my working hours before the changes in Dylan emerged. It wasn’t that I had a crystal ball and had foreseen that home life would become challenging; I requested reduced hours because the education provision I had spent a year fighting for was due to start in September (you can read more about this here and here). While I was delighted that my effort to secure this had paid off, the discovery that Dylan’s day would end at 3pm presented me with a problem.

Dylan was accessing education provision one day a week as an interim measure, so I had already had a taste of how difficult things would become for me after the summer. The situation reminded me of primary school years; when my children were young the lack of fit between the end of the school day at 3.30 and the end of the working day at 5.30 was a constant source of stress. After my marriage broke down, this exacerbated; as a single parent I was dependent on after school club for my daughter and on my mother or a childminder for Dylan. The situation eased as the children moved to secondary school; although never easy, their end-of-days became later and more manageable. Now, it seemed, Dylan would revert to primary time.

While it’s hard to find satisfactory childcare for an autistic child it is almost impossible to find for a ‘high need’ autistic adult, especially for a handful of hours on the edge of a city. With Dylan’s education provision set to increase from September I knew I had to find a more reliable solution to my end of day problem. The only answer I could come up with was me: I would have to reduce my hours, work shorter days and collect Dylan myself.

The cost of flexibility

2013-10-17 12.42.01Parents of disabled children and adults have been entitled to request flexible working patterns (part-time working, compressed hours or working from home) under employment legislation for some time. A 2013 survey of working parents of disabled children (conducted by Working Families & Mumsnet) reported that the most important factor keeping respondents in employment was flexible working (36.5%) and an understanding employer (21.2%). My employer has, over the years, made it possible for me to continue to work full-time by accommodating my requests to work flexibly. My classes, for example, are not timetabled until 10am, giving me leeway in case Dylan’s transport is running late. It isn’t easy – I’m often running at high speed between places and I never take a lunch break – but I manage.

From June 30th this year the right to request flexible working was extended to all employees with 26 weeks of service with an employer. Employers have always had the right to refuse a request to work flexibly if they can demonstrate an adverse impact on business. Multiple requests for flexible working could potentially increase their ability to claim this; if everyone started teaching at 10am there would be an awful lot of empty classrooms in the early morning. It will be interesting to see how the extension of the right to request flexible working impacts on requests granted to employees with caring responsibilities.

The guidance which has been issued to employers includes suggestions about what to do if several employees request the same thing. As ever, the distinction between what an employer is required to do and what they are encouraged to do is critical; there are more ‘shoulds’ than ‘musts’ in the revised legislation. Bearing this in mind, I’m happy with the agreement I secured of a temporary one year reduction in my contracted hours.

The fifth day

2013-12-20 09.56.41

What might have been…

I had an email from a parent last week asking whether I could update her on the education provision I’d been involved with setting up. She had heard it was open – was this true? And had it kept its original purpose to provide for ‘high need’ adults? By the way, she hadn’t seen me and Dylan at the inclusive cinema screenings recently – she hoped we were alright?

The email brought home to me how much had changed and how quickly. I replied that the new provision was indeed open but that changes in Dylan’s needs and funding meant it was no longer appropriate for him. Of course I don’t begrudge another young person taking up the place which Dylan might have had but I feel sad that he won’t access the provision I lobbied so hard for.

So, as it turns out, I don’t need to pick Dylan up at 3pm after all. For the moment, he is attending his day centre (which operates longer hours) five days a week.  It has occurred to me that Dylan may be calmer at the moment partly because of this; when Dylan left school I requested a full time placement, arguing this would provide the routine he needs. Perhaps, had a five day placement been approved for Dylan then, we might not be where we are now.

Well I’ve learned not to dwell on ifs; given that we are where we are, I’m glad for my fifth day. It helps to be able to leave work early enough to have a break before Dylan arrives home from his day centre. The time is also invaluable for doing the chores I can no longer manage at weekends; Dylan used to enjoy shopping with me but with so many of his favourite foods off the menu, and his behaviour unpredictable, this isn’t an option anymore. The fifth day, I’m discovering, helps me tread water.

A reasonable sacrifice

2013-10-17 12.41.52It must have been on a day off that I caught an item on the TV news about downshifting to a four day week, or while I was off sick perhaps. Two young researchers (themselves part-time) were being interviewed about a report they’d authored expounding the benefits of 0.8 employment contracts. Naturally I listened in. All seemed to be going sweetly until the interviewer asked the million dollar (or rather 20%) question: how many people did they imagine could take such a hit to their pay?

There is no getting away from the impact on disposal income; not everyone could sacrifice a fifth of their income or make good the loss from a savings pot. So while it’s great that we have the right to work flexibly, it does come at a cost (and one which is often borne by women). Ironically those most in need of flexible working may be least able to sacrifice income: if you’re on your own no one else is going to pay the mortgage or build your pension. While I’ve never regretted leaving my marriage I am continually struck by how hard it is to bring up a disabled child alone. Two’s certainly better than one if you can keep it together.

There’s a storyline in the BBC Radio Serial The Archers at the moment which involves independent entrepreneur Debbie Archer giving up work to look after her child. Actually it’s not clear whether she’s staying home on account of the child (who she has brought up on her own so far) or the new man in her life. Debbie’s mum Pat, an activist and Greenham Common veteran, is troubled by her daughter’s decision. Listening to Pat bewailing the death of feminism the other evening I almost capitulated on my decision to cut back my hours; income, I realised, isn’t the only thing I stand to lose. Still, I can understand where Debbie’s coming from. Mothering. Caring. These are important. They make a contribution to society and to the lives of those we love. Dylan is calmer now. I have more space in my week to support him and to ease his transition to what lies ahead. It’s a reasonable sacrifice.

Images:

The photographs were taken by me except for the roller coaster (a gift from a friend, original source unknown). I took the photos of the steel helter skelter at the Electric Works, an office building in the city where I live. I attended a conference there last year on women in the workplace so the photos seemed appropriate. I loved that office workers were using the helter skelter instead of the stairs; I watched people on the top floor casually taking a sack from the pile and, sandwiches in hand, sliding out of the building for their lunch break. A perk worth working full time for perhaps :-)

 

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The Working Families ‘Working On Campaign’ aims to:

  • raise awareness of the difficulties faced by parents of disabled children who seek to combine work and care;
  • encourage change in childcare provision and employment practices to enable parents of disabled children to remain in work;
  • change attitudes so that it is recognised that parents of disabled children can work but need support to remain in employment.

Useful resources:

 

In Praise Of Groups

Kent August 2012 019

View from the shelter in Margate where TS Eliot is reputed to have written parts of The Waste Land

You’ve got a talent for holidays, a girlfriend observed. She was responding to my account of a trip to Kent with Dylan rather than suggesting that I’m workshy. I’d organised the trip as part of a ‘Retro England’ theme;  previous holidays had been planned around the themes of islands (Skye and Wight), dis/union (Wales, Scotland, Ireland), mines (Northumberland and Cornwall), pilgrimage (Canterbury and the Pennine Way) and rivers (the Wharfe and Derwent).

My holiday themes usually emerge from a consideration of possible locations based on Dylan’s love of steam trains, churches and zoos. Later I weave in connecting narratives from art and literature: in Margate it was Tracey Emin and TS Eliot; on the Yorkshire coast it was sea poems and Grimshaw; in Laugharne it was Dylan Thomas (of course) and Lynette Roberts; and on the Isle of Wight there was Tennyson. Finally I map geological considerations (coastline, caves and mountains) and tandem cycling onto our holiday plans.

I enjoy pulling these various threads together in order to identify locations and cohering themes. The purpose of the themes, I think, is that they enable me to engage with an ‘autism-friendly’ holiday rather than feel sore that I can’t travel to exotic locations, go on adventure holidays or take cultural breaks. Instead of a holiday being primarily about Dylan’s needs, a theme offers something for both of us.

Easy pairs

Dylan and my daughter cycling in Norfolk, 2010

Independent holidays are helpful for living with autism; they allow us to go where we wish and to do what we want, when we want. It means we don’t have to compromise by not doing something we like or tolerating something we don’t. But individualised themes are also hard work in that I must  research and organise travel, accommodation and activities.

I’ve always been an independent traveller so am used to such planning. Before my children were born I travelled in the Americas and Middle East and in the years before the Berlin Wall came down a girlfriend and I spent long hours visiting the embassies of Eastern Bloc countries while planning a grand tour of Europe. In comparison, organising autism-friendly holidays in the UK is a cinch.

Even within a small family unit, however, compromises must be made. While she was living with us my daughter became increasingly frustrated by our holidays despite my themes. Customising trips for three strong-willed people, I discovered, was challenging. Alone is simple. Pairs is fairly easy. Three gets tricky. Things cannot always be the way we want them when we’re part of a group – unless, of course, we have an ace to play.

The ace

Me declaiming on Tennyson Down, Isle of Wight, 2009

I am guessing my daughter would say autism can be an ace. I would probably agree with her. While our holidays were customised, they were designed around Dylan’s needs first and foremost. In time I came to accept the run of the cards and feel lucky if I managed to play a few of my own - but mothers are tolerant that way. This can be tough on siblings.

While Dylan-friendly holidays might have been hard for my daughter I must admit to having embraced the excuse they offered. As someone who dislikes having to fit into groups (or finds it difficult to fit perhaps) Dylan’s needs provided a useful smokescreen for my own. While accommodating an autistic son can be frustrating, it wasn’t as bad as fitting in with a group of non-autistic strangers. Holidays with Dylan might involve more trains and fewer museums than I would like, but groups demand compromises too and on balance I knew which I preferred. Or at least I thought I did.

The group

Relieved having driven The Quiraing, Isle of Skye, 2009.

In my last post I referred to a short break holiday which Dylan and I took earlier this year (I’ve written more about it here). Unusually, that trip was a group holiday. I booked it because the holiday was for Dylan (I was to be in a supporting role only). I thought that if I adopted my ‘themed’ approach there might be a risk I’d hijack the holiday for my own ends;  taking Dylan on a steam train holiday would ensure the trip stayed focused on his interests.

As it was a busy time of year for me at work, a ready-made holiday had the added advantage of everything having been done for us. The only problem I could foresee was that it had been done for twenty other people as well. But I could, I told myself, cope with the demands of a group for Dylan’s sake – it was only five days and if we hated it then we would at least have tried. In the event, however, the holiday was a success. To my surprise, some of the aspects of the holiday which we most enjoyed arose from the group nature of the trip.

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Inverness 2014 019

Dylan practising his smile, Inverness 2014

1. Being in a group freed me to focus on Dylan rather than reading maps, planning, driving or organising activities.

2. Members of the group with experience in the care sector or a particular feeling for Dylan gravitated towards us while others wanted to engage us in conversation or simply observe. This was good for raising awareness of autism and advocating in the community.

3. The hotel staff were attentive to Dylan’s individual needs even though we were part of a group. One waitress in particular took special care of him; Agata kept Dylan’s blackcurrant topped up during dinner and made sure he got his meal first. She told me that she was enjoying Dylan being at the hotel; it made the dining room more ‘normal’ (by which she meant more like the world outside the hotel). I was grateful to Agata for modelling inclusive practice to hotel guests; the actions of another member of the community can be more powerful than those of a parent sometimes. The holiday pre-dated Dylan’s sugar-free diet as the photos of Agata’s Special Sundae Kit show.

Inverness 2014 097

Agata’s Special Sundae kit

 

4. In a group others keep an eye out for you. As I am used to travelling alone with Dylan, sometimes without anyone being aware of where we are or what we are doing, this felt strange. As I get older and less able to manage independent travel with Dylan, I might appreciate the safety of numbers.

Inverness 2014 049

Harry Potter Viaduct, Fort William to Mallaig line

5. There are benefits in numbers at any age, however; I’m not sure that I would have recognised Harry Potter’s bridge if I hadn’t heard another member of the group say that is what it was. I learned a lot from others during the holiday and realised that what Dylan learns is usually limited to what I happen to know. 

6. In a similar vein, we did things on the holiday which I might not have done without the group; because the itinerary was not mine, it offered opportunities for Dylan and I to engage with different activities. This was good for both of us.

7. Being on a group holiday meant that I came home with photographs of myself and Dylan (which I used in last week’s post so haven’t repeated here). Offering to take our photograph was something which people – even those who weren’t sure how to interact with us - felt comfortable with and wanted to do. For me this was a treat as I have few pictures of Dylan and I together. The concept of ‘witness’ is something which interests me; since my daughter moved away it has felt as if Dylan and I live unwitnessed. For once we had some evidence.

There were also things about being part of a group which were tricky:

1. Because the itinerary is fixed there is a lack of flexibility about a group. This was sometimes challenging for Dylan and I who are used to spending shorter or longer periods in locations depending on how interesting we find them.  Dylan always wanted more rather than less time.

2. Because of this we were usually last back for the group rendezvous, something which may have been frustrating for others. I had few strategies, however, for encouraging Dylan; if he was absorbed in a second hand bookshop (as he was on one occasion) then he saw no reason why he should leave until he had finished. In order to be punctual I had to be canny at managing our stops.

3. One timing issue which neither I nor Dylan had any control over was in relation to toilet stops. It takes longer to stand in line for the disabled cubicle (I have written about the challenge of disabled toilets here). Dylan and I rarely had long enough in the time allocated and were often late back to the group. Having said that, the reason for this was obvious and no one ever expressed their irritation (at least not to us).

Inverness 2014 079

View from the window, Eilean Donan Castle

Looking back

Although a group holiday may not seem an obvious choice for someone autistic,  the advantages  outweighed the disadvantages for us. As well as the benefits for Dylan I was able to claim some of my own. I relaxed more than I do when I am in the driving seat. I read more books, rested more and enjoyed more conversation than usual. Providing it has autism-friendly elements, such as structure and focus, a group holiday can be a good option, especially for a lone parent.

Looking back I would say that the key benefit, however, was that Dylan learned something about accommodating others and that others learned how to accommodate him. For me, this is advocacy in action. Inclusion in the community is, ultimately, about the quality of our interaction with others and I enjoyed watching Dylan make his way among the group and establish his own relationships. I was especially touched by the way members of the group responded to Dylan as an individual, as they got to know him, rather than as my disabled son.

An unexpected treat was that Dylan and I were not only welcomed by the group but befriended by a couple, Hazel and Hector, whose company we enjoyed during the holiday and with whom we have stayed in touch.  Dylan, Hector said to me as we said goodbye, is an exceptional young man.  Through some of the troubles of recent months I have run those words through my head, gratefully.

Looking forward

Dylan and I took the holiday directly before the emergence of some behaviours in Dylan which are giving cause for concern (you can read more about this here and here). I don’t think those things are linked but I sometimes make the link when explaining the changes in Dylan to professionals; it provides a useful timeline because I know that when I took Dylan on the holiday last May there hadn’t been any incidents. Given recent developments in Dylan’s behaviour, I can’t imagine embarking on such a holiday now.

october 2014 003That makes me sad, especially as it is the thing which Dylan keeps asking me for. I think the holiday must have been one of his lifetime highlights as he leaves brochures from the holiday company on my desk constantly. He ‘reads’ a brochure every morning before leaving for his day centre. Every night he says ‘train’ to me and makes the makaton sign. I say ‘yes, train’ and take him on day trips at weekends – he likes them, but I know there is an edge of disappointment that it is not quite what he had in mind.

This week I found a postcard of Harry Potter’s bridge propped up on the piano. I have no idea where it came from; I don’t remember buying it while we were on holiday though I guess I must have done. Certainly I don’t know where it has been kept since. Dylan clearly knew – clever of him to be more specific about the clues he is leaving for me: not any steam train, mummy: this one.

If there are circumstances that can draw the best of us out then maybe a group holiday is Dylan’s;  I flicked through the brochure the other day, wondering if I might be able to find something short and safe enough to chance.  I surprised myself by also dreaming long and risky; I wouldn’t, I thought to myself, rule out the possibility of a group holiday for me one day (though on the Southern Ocean, perhaps, not a steam train).

He’s Not My Toy Boy: mothers and autistic sons

Inverness 2014 084How long did it take you to learn how to communicate with him? the man asked me. I was a bit stumped: I thought the answer obvious. Perhaps he wanted something more philosophic from me, I reflected. Nonetheless I opted for the simple answer: Well I’m still learning, but all his life I suppose. I could tell I hadn’t answered the question satisfactorily. I watched the man purse his lips; he was thinking about how he could rephrase it so I would understand. I took a sip of my tea and waited. Then I saw a quiet panic in his eyes; he coughed and looked away, took another bite of his scone.

We were staying at the same hotel on a short break holiday so the man had been observing Dylan and I for perhaps 48 hours when, finding ourselves seated at the same table, he had asked his question. Afterwards I pondered it; I could sense there had been a misunderstanding but couldn’t put my finger on quite what. Dylan and I had become friendly with a couple staying at the hotel so, still puzzling over the incident, I decided to share it with Hazel. She looked at me with shrewd eyes, wrinkled her nose and said, matter-of-fact: he probably thinks you’re a couple. My jaw must have dropped. Hazel cracked a grin. Don’t worry, she said: he was probably picking up on your closeness that’s all.

The next time Dylan and I found ourselves seated with the man we made small talk for a while before he cleared his throat and ventured: I have an apology to make. I thought you were Dylan’s sister. That’s why I asked that question the other day. I didn’t realise you were his mum. You don’t look old enough if you don’t mind me saying and so I thought you must be his sister you see that’s all. I could tell his error had been bothering him and he needed reassurance from me that it was OK. But I could see through his story; a sister would also have been learning for a lifetime. I realised, however, that he must have spent time thinking up a plausible explanation for his question which didn’t involve casting me as Mrs Robinson. I thanked him for the compliment and let it drop.

*

Inverness 2014 114Later that weekend I was guiding Dylan across a road in the town when I noticed a woman crossing in the opposite direction give us a filthy look – or, rather, give me a filthy look. I am quite used to members of the public staring at Dylan; usually once they have made sense of the disparity between his appearance and behaviour their attention is warm and positive. Occasionally we encounter somebody unpleasant and then I have to consider whether and how to challenge them (sometimes they get away with it because of the distress such a challenge would cause Dylan). On this occasion, however, it was definitely me not Dylan who was the object of scorn.

Although I didn’t understand why I was a target for it, I recognised the look which the woman on the pedestrian crossing gave me. Her gaze was, I knew, about sexual identity and behaviour. I am used to being judged by other women and think of this as part of the experience of being female. Such surveillance has been well-documented; in my own field of education, research accounts of the ways in which girls ‘police’ girls have significantly enhanced our understanding of their experience of schooling. So while the woman’s behaviour wasn’t unfamiliar to me, it did strike me as odd given my age and the fact I was performing my mother/carer role.

Inverness 2014 118Nonetheless I reacted instinctively: I checked my outfit for errors and accidents. Nothing that I could fathom. As I continued down the street I watched myself passing in shop windows. I couldn’t see anything amiss. I was wearing Doc Marten’s with a simple cotton dress and raincoat. Perhaps my beret was a little jaunty but really, I thought to myself, the idea that she would see me as a sexual threat, predator or outcast was ridiculous. I couldn’t find an explanation for the look the woman had given me but it rankled and left me feeling anxious.

Only after we’d returned home did I realise what had happened that day. She thought Dylan was your Toy Boy, my osteopath said when I mentioned it to her.  I think I had known this but not let myself admit it, it seemed so preposterous. Maybe that’s why I shared the incident with her, apropos of nothing; I wanted to check out my hunch with someone whose judgement I trusted. Once I had been given permission to admit the reason, I remembered all the other people who, from the looks I had received, had had exactly the same thought.

*

Inverness 2014 156Since these incidents I have been reflecting on why members of the public might mistake my relationship with Dylan. Clearly it is an error which can only happen once a child has reached a certain age and as Dylan has recently become an adult this is new territory for me. I’m not sure whether it is an issue facing carers more generally; it’s not something I’ve heard mentioned by any I must admit. It occurs to me, however, that the error probably requires a particular set of factors to be in alignment.

Although mistaking a parent-child relationship can happen only during adult years there is probably a fairly small window for the error. The mistake, I suspect, is based on Dylan being at his physical prime and me being just beyond child-bearing years; assumptions are made by society about what is considered appropriate sexual behaviour for both those categories (non-disabled people in cross-generation relationships will be familiar with those). I am guessing that the public might not mistake Dylan’s carer as his partner when he is middle aged, and his carers are significantly younger than he is, or when I am significantly older than I am now.

As well as being age-related the erroneous assumption is probably fuelled by a parent supporting the child alone and by parent and child not being same sex. There has to be something more than this though doesn’t there? Lots of mid-years mothers and fathers walk down the street with their adolescent sons and daughters without the world assuming them toy boys, sugar daddies and cradle snatchers. The difference, then, must hinge on behaviour as well as appearance.

*

Because Dylan is vulnerable in the community I need to support him physically when we are out and about. Dylan lacks road sense so must be guided across roads and supported while waiting to cross. Because walking through public space is difficult for him, Dylan seeks physical reassurance from carers for comfort as well as guidance. When Dylan was younger I would hold his hand. Recently I have encouraged Dylan to link arms instead as this feels more adult and avoids the childlike or romantic associations of hand-holding. Dylan still sometimes reaches for my hand, however, when we are out walking and likes to link arms even away from traffic.

Dylan not only enjoys this physical contact but he uses it for purposes of communication. He squeezes my palm in different ways, for example, to initiate ‘conversation’, to ask if everything is alright or to say ‘hurry up’ or ‘I don’t like this’. He also taps me to communicate (you can read more about this here) and uses a variety of paradiddles, hugs and arm bends. While I have to be careful of Dylan’s physical strength, particularly when he is distressed, his use of touch to express feelings is a rich and valuable part of our relationship. It is this physical closeness, I suspect, which an unsuspecting member of the public could misread.

*

Dylan and I were once misread by a member of the public in a way which seemed inconceivable. One day, when Dylan was 15 or 16, we caught the eye of a senior citizen walking slowly, on two sticks, along the road where we live. Dylan and I were skipping hand-in-hand through a private alley which leads to the road (Dylan loves to skip so we do this sometimes in quiet places). As we approached, the woman lifted her eyes from the pavement, stared at us as if puzzled, then declared: Twins!

There are 33 years between Dylan and myself. As well as being a different sex, our eye and hair colour are different. If being mistaken for Dylan’s partner or sister is preposterous, being called his twin challenges identity at a whole new level. At the time I dismissed the incident as an aberration of judgement due to the woman’s age. I realised afterwards, however, that this was patronising; she had clearly seen something to cause her to think us twins. People have sometimes commented to me that although superficially Dylan and I look physically different, the link between us is clear if you look more deeply. The elderly woman had, I told myself, seen beyond the obvious; it was this, combined with our childlike behaviour in the alley, which had confused her.

Recently I have been working on a manuscript of love poems. While many writers have assembled such collections (including the poet whose name I share) my focus has been slightly different in that the poems are concerned with non-sexual love. What I wanted to explore, through these poems, was the nature of intimacy: as well as poems about a mother and child there are pieces about relationships between friends, colleagues, and a trapeze girl and her catcher. A couple of the poems concern the particular intimacy which being the carer of an adult child involves; perhaps this is what the woman in the street detected when she imagined us twins.

*

The incidents recounted here illustrate three mistaken reactions to the same relationship, each with different emotional impact and implications. While acts of public condemnation, such as filthy looks in the street, are hard to receive and difficult to counteract, the meeting with the man in the hotel offered an opportunity to gently challenge expectations. The elderly woman’s mistake may, at first glance, seem the most significant but in perceiving physical contact as denoting intimacy rather than sex she was pointing a wise finger.

What the incidents also illustrate, perhaps, is how constrained a part of British culture touch is. Physical contact in public is assumed to indicate childhood or sexual love; we accept hand-holding between parents and children but in adulthood touch is something which is reserved for lovers. Carers and disabled people challenge attitudes and assumptions every time we access the community; sometimes change is light and easy but at other times it needs a sledgehammer. If I were the sort of person who wore slogan T-Shirts I would have one made for the women on pedestrian crossings : He’s Not My Toy Boy, He’s My Son.

 

Images:

The first four photographs were taken by Hazel and others (apart from the selfie through a mirror) during the holiday referred to in this post. They were taken on the Isle of Skye, in Aviemore and at the Botanical Gardens in Inverness. The photographs of Dylan and I holding hands when he was younger were also taken on Skye (by my daughter in 2009). The final photograph was taken by my daughter in Ventnor on the Isle of Wight in 2009.