Autism And Alcohol: reflections on an anniversary

The Old Horns, Bradfield

I often mention pubs in my posts about living with autism. Perhaps I should clarify: Dylan’s drink is a pint of blackcurrant cordial made with tap water and served with ice and a straw. Dylan won’t touch anything with bubbles, or even a barely perceptible fizz, nor will he drink anything which is warm or tastes bitter. This leaves only water and non-carbonated soft drinks. As there are also rules about juice (no bits, cloudiness or tropical fruits) Dylan is limited to apple juice at home and blackcurrant when he’s out. There is no danger that he will ever be drunk or addicted to coca cola.

Dylan’s interest in pubs is, I think, primarily social. He enjoys the ambience of a pub garden in summer and an open fire in winter. He likes the quiet hum of voices and the sudden bursts of laughter, the activity at the bar and background music. He might not want to take part in conversation but he likes listening in. While my daughter lived with us Dylan witnessed language as a backdrop to family life but since she moved away Dylan and I often fall to companionable silence; going to the pub satisfies the need we both have to be exposed to language.

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When we go to the pub I usually order a lime & soda for myself. It’s taken time for me to appreciate – six years in fact – but it tastes good. Although these days I enjoy our pub visits it wasn’t always the case. In fact for a while I avoided them. In England the one thing you can bank on, town or country, is a pub (sometimes several in quick succession). Imagine the effort, then, to cross the road or look away. But I couldn’t trust myself. Not at first.

~

The oldest pub in Sheffield

The Old Queen’s Head (the oldest pub in Sheffield)

My 18 year old daughter is due to go to University this year. A gifted linguist, she plans to study Spanish in France. I spent a year abroad as an undergraduate but I was older than she is, it was an English-speaking country and I had the support of a UK institution. I understand that my daughter wants to challenge herself by not just learning a language, but learning through it: still, part of me is anxious about her leaving.

She telephoned recently (she lives with her dad) to tell me she had found herself a summer job using her languages. Great I replied, remembering how I had spent the summer between school and university working in a hotel. My enthusiasm waned, however, when she revealed more; the job, it transpired, was in Morocco. Haven’t you got enough to look forward to? I asked her. Isn’t going to live in France adventure enough? In the event she decided not to take the job: right opportunity, wrong time she concluded.

Afterwards I asked myself why I had felt so anxious about the proposal. I had been a bit off-the-page with my own life after all. She’ll fall in love! a colleague had exclaimed when I mentioned my daughter’s plan. She’ll not get to France! I suspect it was this which led me to reflect on how life-changing the summer after leaving school can be.

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My memory of the time is vivid 35 years on. Plunged into double shifts at a city hotel I discovered there were new rules to follow (and break). I was on the bottom rung covering leave: I had to be chambermaid, chef’s assistant, waitress and barmaid. Nothing had prepared me for this; without structure or sense I needed a role model. My older sister – the hotel manager – had employed me and that summer she mesmerised me; feared but fair, she commanded loyalty and respect.

My sister was also hardly ever without a drink and cigarette. She smoked Dunhill and drank vodka; in her hands these tricks of the trade became impossibly glamorous. At the end of my first week I queued outside her office for my pay packet. As I signed her ledger she asked whether I’d like to join her for a drink in the bar: by the time I left for university I was a regular drinker with a pack a day habit.

~

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Dylan Thomas’ pub, Laugharne

Arriving at university I discovered that my newly-acquired habits eased the anxiety of making friends. When I started writing I found they helped with that too; drafts of a poem became associated with endless drinks and cigarettes. As a poet I was able to embrace smoking and drinking as writerly adornment. This was also useful as smokescreen; alcohol can be an effective way of controlling nerves and in some professions (among classical musicians for example) is commonly used to enhance performance. A drink before a poetry reading, I found, calmed me.

I didn’t reflect, at the time, on my use of alcohol. I certainly didn’t think of it as unusual or consider it a problem. Drinking and smoking were part of an identity I had constructed; this was about being young, free and creative. I don’t think it ever occurred to me that I might be using it to assuage anxiety or relieve stress. Now, having lived alongside Dylan, I would say that he is at the extreme end of a spectrum of anxiety from which many of us suffer. I have never been diagnosed with autism or anxiety but perhaps a proneness to using alcohol is a risk for those with such traits. Maybe Dylan’s anxiety appears so great because he doesn’t control it with the methods which others habitually use.

~

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Waggon and Horses, Langsett

While my relationship with alcohol at university was playful it would quickly become serious. My professional and creative life often brought me into contact with other addictions. It goes with the territory, I told myself. One boyfriend (let’s call him Hans) was diagnosed with alcoholism in his early 30s. With a respectable job it was possible to think that Hans lived clean – at least on 19 days out of every 21. The remaining 48 hours would see Hans bingeing in one of the pubs from which he had not yet been barred. The difficulty for me was accepting those 24 hours as reality not aberration; because they were such a small proportion of our overall time together, it took me a while to realise that the binge was as much a part of Hans as the other 19 days.

Hans tried to stop drinking one summer. I wasn’t sure whether I should stop too, to support him, but my GP observed: you don’t have the drink problem, your boyfriend does. Hans was doing well so we decided to take a holiday in Germany. One day I suggested we visit Dachau; Hans wasn’t keen but gave in. Arriving back in Munich at the end of the day Hans headed straight for a Biergarten. I didn’t understand at the time but later realised that in the face of horror Hans had anaesthetised himself.

~

The Cricketers

This incident gave me a different view of Hans’ alcoholism. It also made me realise how difficult the road to recovery is. Soon after I would meet a recovering gambler (let’s call him Ash). Two things he told me stay with me. The first is that a gambler needs to place larger and larger bets as the risk involved in losing (or winning) smaller amounts no longer produces an adrenaline rush. This is the other side of the anaesthetic coin; addictive behaviour because you feel too little rather than too much. The second is of Ash’s grandfather (who also liked a flutter) at the kitchen table one day, palms turned up, fingers spread wide: All gone, he said. It’s all gone. That sense of loss is something Ash would often refer to: the emptiness of losing everything (money, job, relationship) to addiction.

What impressed me about Ash was his strength; we would go regularly to the races but he never placed a bet himself. Lots of people start gambling, he observed, but few are able to stop. Recovery was the point, not the addiction. Later, one of my landlords would make the same claim (in relation to mental illness): he had been sectioned and spent time in an institution. In order to get out, he told me, a doctor had certified him sane. Has anyone ever certified you sane? he asked.

~

Recovering (from alcohol, gambling or mental illness) was increasingly attractive. I had quit smoking and drinking while I was pregnant in 1985 but after the baby died I, like Hans, had discovered alcohol as anaesthetic and resumed old habits. In the 90s I had another chance to quit when I was pregnant again. Within months of my daughter being born, however, Dylan was diagnosed autistic. Again I resumed drinking and smoking, this time heavier than before. The summer I left school I had used alcohol to belong. At university I used it as mask. Later I used it to numb myself. Now I would discover the most insidious use of all.

~

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The Ranmoor

Organising child care  is difficult for parents of small children. In the early years life can feel like a never ending night feed. If you have family or willing friends then evenings out can be arranged, though they tend to become planned rather than spontaneous happenings (which, when the time comes, parents may be too tired to enjoy). If your child is autistic, however, all of these challenges are greater; it is more difficult to find someone to babysit and considerably less likely that you will have the energy for a night out. Furthermore, these difficulties can increase rather than lessen as your child gets older; while my mum was prepared to look after Dylan when he was little, she was less confident as he got older.

I remember feeling hard done by, when Dylan was younger, if my husband and I couldn’t get to an event or had to decline a social invitation. In time, however, staying home became easier and less stressful. While this began as a practical response to circumstance, declining social events presented itself as preferable once we’d established a routine of relaxing at home. Alcohol – a flexible and reliable reward – quite naturally became part of this routine.

The need to spend more than usual amounts of time at home can encourage a gradual increase in the routine use of alcohol. While this was never dramatic, given the context of caring responsibilities, the cumulative effect was significant. Reference is often made to the ‘invisibility’ of alcoholism among steady users in white collar professions; those people who never appear drunk or incapacitated by alcohol because they have become accustomed to consuming excessive units each week as part of their working life. I suspect that some carers may find themselves in a similar position, albeit via rather different routines.

~

Kent August 2012 170

Somewhere in Kent

Perhaps I am painting it darker than it really was. I never poured a drink before 6pm in the evening. I rarely drank more than three quarters of a bottle of wine. I was never drunk, ill or incapable in the evenings or the next day (though I was frequently tired). I never thought of my relationship with alcohol as problematic and I would certainly never have called myself an alcoholic. In fact my problem, in so far as I admitted one, was not alcohol but nicotine.

I had tried everything I could think of to quit. Patches (zero impact). Chewing gum (my skin broke out). Zyban (four unbearable days without sleep). Hypnotism (I was awake throughout). Self-help books (I was too cynical). The Russian mystic in Brookline, Massachusetts (he was good but I wasn’t).

I never meant to give up alcohol but in the end it seemed the only way to stop the freight train. ‘The freight train’ was my description of a phenomenon I would experience roughly once a month when I would spend the day flaked out on the sofa feeling extraordinarily tired. Only with huge effort and will could I attend to the bare minimum (providing food and ensuring Dylan was safe). It was, I used to say, as if I’ve been hit by a freight train. The impact was comparable to a day off sick. I now think that this was probably the cumulative effect of regular daily alcohol consumption; never having so much as to be incapable, but topping up and topping up until I was just dog tired. In the end I couldn’t bear one more hit; I had to get off those tracks.

~

The Norfolk Arms, Ringinglow

19th July 2008. School holidays just beginning. My daughter in Scotland for the summer with her dad. Freight train day. Was this exhaustion at the end of a busy semester? Or me succumbing to the space to relax? I was tired of excuses. I remember my slow walk to the kitchen. I poured a bottle of wine down the sink (I can still visualise the red swirl and hear the glug glug) then threw a packet of Marlborough Lights (18 left) in the bin. Not drinking, I told myself, could be part of stopping smoking. Perhaps my attempts to quit cigarettes were failing because alcohol weakened my resolve. I would drink again, I promised myself, when I’d conquered the nicotine.

And so I embarked on my first summer. It helped that my daughter was away; Dylan couldn’t ask me questions or enquire how I was feeling. I was glad of that: I could only do this in complete silence. Pubs were out of bounds. I declined invitations to events I thought might be tricky. I turned down dates with men who smoked and drank. I didn’t trust myself; I might reach for their packet or say oh go on then if told to have a ‘proper drink’. That summer was hard. A family holiday in Cornwall at the end of it was probably as close as I came to failing. But I did it. I coped. I had discovered the Will Power Road.

~

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The Old Horns, Bradfield

Six years later I am comfortable in pubs. I don’t falter or flinch. I trust myself. I haven’t reintroduced alcohol as I thought I would; I tell myself one day I will but I doubt this. What I noticed, a month after my double quit, was that I felt better for not drinking. I’m better for not smoking too but the effects of not drinking are more obvious. No more freight trains. More energy. Clear head.

I still don’t use the term alcoholic. ‘Wine’ Dylan says sometimes, pointing at the vinegar bottles in the fridge or to a display in our local shop. He didn’t have many words when he was young but this was one of them. I might tell myself that I didn’t have a drink problem – wasn’t an alcoholic – but my son’s quirky core vocabulary ought to raise at least one of my eyebrows.

Since I’ve kept this blog I’ve encountered a number of people who write about the impact of alcoholism and recovery on their life; more than any other, these are the blogs which move me. They have also helped me to reflect on my own experience and the possible links between alcohol and autism. In this post I have suggested that some people may use alcohol to manage conditions associated with autistic spectrum condition such as anxiety or the need for control. I have also speculated that parents and carers may be vulnerable to increased routine use of alcohol due to the emotional and practical circumstances of caring. Hopefully I have also, however, managed to convey my admiration for those who confront and defeat an addictive relationship. As Maya Angelou says:

You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.

 

 

The Sir William, Grindleford

The Sir William, Grindleford

Postscript:

This post has been a bit different from my usual pieces, glancing only tangentially at autism. Thank you for reading and for supporting my 6th anniversary celebration :-)

The poem below is based on the visit to Dachau with ‘Hans’ . It was published in my first book, Walking On Tiptoe (Staple, 1998) and included in the re-issued version of that book Walking on Tiptoe and Other Poems (Bluechrome, 2007). It reflects on alcoholism as observer rather than participant; reading it now I am struck by its identification of  issues, such as anxiety, which I reflect on here as relevant to me.

Der Mass Weizen

Today, we take the lime green S2 line
in the direction of Petershause.
I have chosen, without thinking,
a green cotton blouse embroidered with yellow stars.
Our stop is the one after Karlsfeld,
just past the Ford factory and the big houses
with swimming pools. I hadn’t expected
people to be living here – am surprised
by their laughing gardens as the train rolls by.

~

You have been dry now for ten weeks.
We are on holiday, making our slow way
past mountains, cathedrals, sliding rivers.
You have unpacked your pills, nightly, at each hotel.
You sweat and tremble, pointing to places
you remember.  This is your country -
but unfamiliar, in the heat, to walk so quickly
past the kiosks and bars.

~

For the last bit of this journey we take a bus.
It is full of American voices, Japanese cameras,
a few people wearing headscarves.
It was my idea to come here.
We climb off and stand aside, let others
tramp in lines along a narrow track, the gravel
underfoot unbearable against the silence.
There is no shelter here from the high sun; it burns
through the thin fabric on my shoulders.

~

The crowd troops to the sheds to see for itself
while we walk the perimeter, looking for a gate.
I stare upwards at the barbs along four lines
of wire above our heads, a white concrete tower
with four small windows in its roof.
I stumble; slip as the gravel skitters away
under my smooth-worn soles. Out of water,
our lips begin to crack.

Beside me you are walking, as always,
with a stoop; trying not to be so tall,
as if you have no right to be here.
You lift your anxious eyes to mine and I turn
away, thinking how ragged you look today
with your sunken cheeks. And I wonder, then,
if this is your country; if perhaps you live
with these walls and watchtowers and the gravel
crunching and sliding underfoot.

~

Later, arriving back in Munich too late
to leave by the early evening train,
you head for a Biergarten -
order ein viertal liter und mass weizen.

Behavioural Interventions In Autism: holding the middle ground

In this post I resume my review of early intervention in autism. Previously I have offered an overview of interventions, based on the therapies which I used with Dylan, and categorised these into four groups: sensory; dietary and medical; behavioural; and educational. Earlier posts have reflected on sensory and dietary/medical interventions; this post considers behavioural approaches.

The middle ground

I was chatting to the father of an autistic child recently about the behavioural programme he is using with his son. When I told him that I had used behaviourist and non-behaviourist approaches when Dylan was a child he expressed surprise: There isn’t usually any middle ground, he observed. People seem to be either passionately in favour or passionately against.

 He is right: behavioural interventions more than any other incite strong feelings among parents and professionals. When Dylan was diagnosed in 1996 there was growing interest, in England, in therapies based on behaviourist philosophy. Some families embraced these programmes while others chose to have nothing to do with them. Twenty years later the behaviourist pioneers have established schools and services which are still used with passion and commitment by some families. The lobby against such programmes, however, continues to be equally vociferous. How could I lay claim to both lands? To explain the view from the middle I first need to consider the ground it lies between.

Behaviourism and constructivism

Behaviourism is the label given to theories of learning which are based on changes which can be observed. The Russian Psychologist Pavlov demonstrated, in the 1920s, that it was possible to train a dog to respond to a given stimulus (in this case to salivate when a tuning fork was sounded) a process known as classical conditioning. Pavlov’s Dog became the foundation for experiments to determine whether children’s behaviour could be shaped in a similar way.

In the 1930s Edward Thorndike and B.F. Skinner developed the concept of operant conditioning to describe intentional rather than involuntary behaviour, i.e. learning that involves a decision rather than a physiological response such as salivation. Operant conditioning is based on the idea that consequences determine whether or not a person will repeat a behaviour; a system of reinforcers and punishers are used to shape a child’s actions away from inappropriate and towards target behaviour. Reinforcers strengthen behaviour and can be either positive (doing something which leads to a reward) or negative (avoiding something unpleasant). Punishers, meanwhile, are used to weaken behaviour and involve a penalty or the removal of privileges.

Other theorists, meanwhile, emphasised the social rather than behavioural dimensions of learning. Also in the 1930s, Lev Vygotsky described the way in which knowledge is built collectively among learners, a process referred to as social constructivism. According to constructivist theory, learning is personal and active; our knowledge builds on what we already know and is influenced by the communities in which we learn. Learning, Vygotsky believed, is collaborative and dialogic; our interactions are experiences from which we emerge changed. This notion of knowledge as shared and co-constructed emphasises the role of groups in educational processes.

As a great deal of school-based learning is social there is considerable potential for autistic children to encounter barriers in the education system. Even before an autistic child starts school, however, the consequences of not engaging in social learning are evident; Dylan did not learn to dress, feed himself, use the toilet or play with toys through his interactions with others. Because behaviourist strategies are based on clear consequences in response to observable behaviour, rather than on the emotional protocols involved in social learning, they are felt to be a potentially more effective approach to educating autistic children.

 Parent and professional (I)

I have found it useful when discussing the behaviourist-constructivist spectrum with students to draw a distinction between education and training. Training, I suggest, is something which a person needs in order to carry out a procedure; we train people to answer the telephone in a call centre, use a piece of equipment or file papers. Education, by contrast, requires people to think critically about skills; instead of simply filing the paper in the correct drawer, we might re-write, re-categorise, disseminate or destroy the paper. Education is thus about promoting thinking skills and enabling us to act creatively in response to a particular set of circumstances.

There is debate about whether preparation for certain roles requires education or training. In my own field of education, for example, some people believe students can be trained to teach as you might learn a craft, while others believe teachers must be educated. You can tell a lot about someone who works in the sector by their language. If they refer to ‘teacher education’ then they are probably committed to promoting critical reflection on practice and to encouraging students to question their assumptions about schooling and society. The discourse of teacher training, by contrast, focuses on achievement against a set of teacher competences. I have always considered myself an educator rather than a trainer and drawn on constructivist rather than behaviourist approaches in my own teaching. My professional practice was therefore to have a significant impact on my response to intervention programmes when Dylan was diagnosed.

 The professional: non-directive therapy

Christmas 2013 028My professional position led me, initially, to reject behaviourist approaches; I opted, instead, for a therapeutic response as far removed as you could get from behaviourism. Non-directive play therapy emphasised the importance of following your child’s lead; it required me to enter Dylan’s world in order to understand his experience and win his trust. Mirroring Dylan’s behaviour involved me spending time alongside him; I would sprawl on the floor copying his actions or run in circles around the park with him, hands flapping.

Non-directive therapy, it is suggested, supports the relationship between parent and child by enabling positive interaction. Some of the pre-requisites for communication, such as turn-taking and imitation, can be promoted through non-directive approaches to play. For example if Dylan threw a toy car across the room, rather than reprimand him for throwing I would throw a toy too. The intention would be to get Dylan’s attention: hopefully I would be able to re-shape the behaviour so that we were throwing soft toys instead of cars, or throwing more gently or into a different space; the aim would be to encourage throwing in turn in order to create a communicative rhythm between us. The key to the approach is to take the child’s lead and not to direct; this is quite unlike a behaviourist approach where the aim is to promote a pre-determined target behaviour.

I have reflected a little on my experience of non-directive therapy in a previous post. One of my key observations is that it made little difference to Dylan’s behaviour but had an enormous impact on me; non-directive approaches enabled me to walk in Dylan’s shoes and thus to develop a better understanding of his world. I think that this helped to strengthen our relationship. I don’ t believe, however, that there was any measurable change in Dylan’s behaviours while I was working within this non-directive framework. On all key measures – toilet training, feeding, dressing, communication, play, accessing public spaces – life was a difficult and challenging as ever.

One day I had cause to reflect. Families with autistic children in my city had been given free tickets to the cinema by a local charity and I took Dylan along. Immersed in my non-directive therapy I followed Dylan out to the front of the auditorium when he ran off. People were still taking their seats. I wasn’t confident that I could get Dylan to sit down. I sprawled next to him by the big screen, squirming around on the floor. Perhaps he’d calm down I thought. Maybe this way I could persuade him onto a seat. Suddenly I heard a voice and looking up saw a face I vaguely recognised. Hello Elizabeth. Fancy seeing you here. I see you’ve got your hands full. A word of advice if I may: it’s all about discipline. If I were you, I’d get on with it. I couldn’t quite place her – had to ask her name. It turned out to be somebody I’d gone to school with; she had three children now, the youngest autistic. He was doing well, she told me, in mainstream school but that was all down to the strict discipline and direction the family had built around him.

 Parent and professional (II)

 What if she was right? Could my rigid adherence to an approach I felt comfortable with be unhelpful to Dylan? While it was natural that my work as an educator would influence the way I chose to work with Dylan, I was no longer just an educator; I was the parent of an autistic child. Could I accept that my preferred approach to learning may not be appropriate for Dylan?

Having children of your own can present some interesting challenges; almost inevitably your practice develops to take account of parental as well as professional experience. If your child is disabled, however, the impact on practice can be significant. For me, the interplay of parental and professional knowledge could involve more than a few amendments to my lecture notes: repositioning myself on the behaviourist-constructivist spectrum would strike at the heart of my professional values. I decided, however, that I had to at least keep an open mind.

The parent: behaviour modification

So in 1997 I attended a conference in London organised by Peach (Parents for the Education of Autistic Children) a group championing the Lovaas approach. The programme involved working intensively with children for 30-40 hours a week on a 1:1 basis as soon as possible after diagnosis. Based on behaviourist philosophy (specifically Applied Behaviour Analysis) the Lovaas method used reinforcers as part of a programme which built step by step to support the development of communication and re-shape behaviour.

I was uncomfortable at the conference. I didn’t like watching the children who were paraded as ‘proof’ that the approach worked. The atmosphere felt more like a rally than a conference; there were celebrations and exhortations, appeals and promises. But there were a couple of presentations which I found interesting, particularly one by Nina Lovaas which focused on adaptations to the programme which might be required for more classically autistic children who are non-verbal. Although it was still early days for Dylan my gut instinct was that he had a similar profile to the children Nina Lovaas described. On the train home I decided I would trial an adapted behaviourist programme based on what I had heard.

Dolly mixtures and jelly tots

dolly bestbritishsweets.co.ukI took a career break, telling myself that if I didn’t I might regret it one day; maybe I could make a difference. We weren’t in a position to hire the team of aides who would usually be employed to help deliver the programme so I did it by myself. As I’d been used to working full time this wasn’t too much of a shock; I simply exchanged paid work for work with Dylan.

My overall impression of that time is of exhaustion (in another post I’ve shared a poem, Blackbird, in which I attempt to capture some of these emotions). One clear memory I have is of an incident one morning. I was focusing on the development of non-verbal communication through imitation (touch nose, clap, hands in the air, wave, stamp feet, blow). It might not sound challenging but for a three year old child who struggled to remain seated at a chair let alone observe and copy actions it was hard work. The reinforcers (a pocketful of dolly mixtures and jelly tots) were critical. Dylan loved sweets. Once he realised there could be a steady supply by copying me he vaguely obliged. I say ‘vaguely’ because the actions were sloppy; if Dylan lifted his hand somewhere in the region of his face for ‘touch nose’ he would get his dolly mixture. Clapping was the suggestion of hands coming together. Any attempt to observe and copy me was rewarded with a reinforcer from my pocket.

tots bestbritishsweets.co.ukOn this particular morning when I fetched Dylan into the room and gestured to the chair he looked at me then eyed my pockets. In quick sequence he lifted his arms above his head, touched his nose and clapped his hands. I stared at him in shock. He did it again, this time more urgently. Dylan wasn’t sure which action I wanted but keen for a sweet, like Pavlov’s Dog, he performed. I could not continue with this, I thought to myself; it was training and I did not want a performing seal.

The middle way

Later I would soften this position. Although I abandoned Lovaas-inspired intervention I built some of its features into a home education programme I designed for Dylan (about more of which in a future post). I also came to accept that there are areas where training is useful and sometimes necessary; toileting, eating with cutlery, dressing and accessing certain public spaces for example. I therefore drew eclectically on behaviourist and non-directive strategies depending on target and context.

dolly the pinksweetshop.co.ukIn educational settings, however, I resisted behaviourist approaches and while Dylan was at school I insisted on a ‘no food reward’ policy. Because Dylan doesn’t respond to social motivators, food is the only viable reward; while I am prepared to use it sparingly I am uncomfortable with the routine use of sweets. I was actually more comfortable using behaviourist approaches with my daughter when she was young; the reason for this is that I could use social reinforcers with her (‘if you want a sleepover you’ll have to tidy your room’) in a way that I couldn’t with Dylan. The most effective use of behaviourist strategies, I think, employs such motivators; in this sense social learning is actually at the heart of many behaviourist programmes.

While I have used behaviourist approaches only lightly with Dylan I would not hesitate to use them more extensively with a child for whom social reinforcers were acceptable. This raises the issue I keep coming back to that an appropriate intervention for one autistic child will not be the right choice for another. As well as autistic children presenting differently from each other, some autistic children may present differently over time, responding to alternative reinforcers as they get older. At 20, however, Dylan is no more likely to accept a social reinforcer than he was at three; he is not motivated by anything except food and appears not to understand reinforcers based on the avoidance of something negative. As far as punishers are concerned, Dylan doesn’t understand the psychology of the withdrawal of a reward or the concept of penalty; he appears not to be concerned by the impact of his actions on other people nor does he seek the good opinion of others. The extent to which I can orchestrate consequences in order to shape Dylan’s behaviour is clearly limited by this profile.

The baby and the bath water

jelly bestbritishsweets.co.ukIn an earlier post I suggested that choice of therapy depends on the child, parent, discourse and opportunity. While just one of these factors may be relevant for some interventions, behavioural approaches require that all of these be considered. Firstly, the extent to which a child responds to reinforcers will determine the outcomes of the programme. Secondly, the feelings and beliefs of the caregiver are crucial as the programmes are intensive and require absolute commitment. Thirdly, it may not always be possible to implement a programme given the economic as well as emotional investment required.

Finally, and perhaps crucially, the decision to adopt a behavioural programme involves parents in negotiating powerful and competing philosophical discourses. Behaviourist interventions incite strong feelings among parents and educators; this has always been the case but is perhaps more so today than 20 years ago. We now know more about how it feels to be autistic and we have more respect for the behavioural differences which can arise from autistic neurology (alternative responses to sensory stimuli for example). One of the difficulties with behavioural programmes is that they promote norms of behaviour which do not consider (indeed which aim to reduce) this ‘otherness’. It could thus be argued that behaviourist programmes are positioned within a deficit framework in that they aim to ‘fix’ autistic children.

While I understand the tendency to line up in favour or against such programmes I wonder whether we might sometimes be in danger of throwing the baby out with the bath water. Occupying the middle ground promotes eclecticism; selecting strategically from a range of approaches, and adapting these to support my personal principles and beliefs, has turned out to be the most comfortable place for me.

 

Other posts in this series:

 

Images:

Portraits of educational thinkers are via wikipedia; images of sweets are via bestbritishsweet.co.uk and thepinksweetshop.co.uk.

Getting Bloggy: an update and an elephant

Somebody said to me recently that they thought maybe I had two blogs; some of the pieces I write are articles about autism whereas other posts tell the story of my on-going battle to secure appropriate provision for Dylan. I have been thinking about this on and off, wondering what the implications might be of performing surgery on my blog.

The reason for these two agendas is part philosophic, part pragmatic. I set up the blog last summer following a stressful experience trying to support Dylan as he transitioned from school to adult services. I wanted to provide information about this process for other carers and a blog seemed to be the most efficient way. Once I’d set the blog up, however, I realised that I didn’t want to simply describe my experiences; my aim, rather, was to offer reflections on what I had learned.

What this means is that I have to wait for the long view before I write. While I am musing on and mulling over current experiences I enjoy writing the other posts – the ones which are more like articles. These pieces draw on a longer timeframe in that they reflect on experiences which happened some years ago or they weave together historic and contemporary observations. I don’t want to suggest, by this, that I don’t value the immediate response; I do and I often make it. I have just tried to avoid doing that here.

Real time and unreal blogging

I suspect that might mean I’m not a real blogger. I think I’m right in saying that the word ‘blog’ derives from the phrase ‘web log’ which refers to an online journal or timeline of events. Although a huge variety of designs are now available, logging features (such as dates and deleted text) are a key part of the blog interface. There are plenty of blogs around which adopt a diary-like approach but there are also bloggers like me who prefer to post stand-alone articles.

Kent August 2012 158My posts have sometimes included background information about on-going aspects of Dylan’s care but I have tended to foreground reflection rather than diary information. Last week, however, this proved challenging. I had planned to reflect on accessing short break provision but was overtaken by real-time events; Dylan’s short break provision broke down while I was writing the post. How to maintain a reflective voice when you’re in the thick of it? The material which I thought was illustrative background (i.e. Dylan’s experience) wanted to move centre stage into the foreground.

I tried to maintain my reflective distance last week but it meant there was a bit of an elephant in the room. When I describe this week’s post as getting bloggy what I mean is that it is a real time offering. Unlike my previous posts, which had a focus unrelated to the time of posting, this week’s is more of a diary entry. Hopefully this will help me to pull the two strands of my blog together, take stock and deal with the elephant.

Stock take

If you have been following this blog you’ll know that I’ve been battling with the funding and policy environment on Dylan’s behalf this year. In England, autistic adults may be eligible for support from one or more of education, social care and continuing health care budgets. There are, however, a number of problems (at least in my Local Authority) with making information about these systems available to families.

All school leavers with a statement of Special Education Need (SEN) for a learning disability are entitled to continuing education. In the very near future I will focus a blog post on this because it has significant implications. It is my contention that Local Authorities are currently failing in their statutory duty to provide this, particularly to people who present with high or complex needs. Dylan was not offered any education when he left school last summer and much of my effort in the last year has been directed at lobbying for the development of appropriate local provision. Social care and continuing health care funding may also be available for young autistic adults depending on level of need (determined by assessment) and I’ve also been pursuing these over the last year.

In a recent post I compared these three funding streams to a three-legged stool. In Dylan’s case, the stool was broken: nine months after leaving school he still did not have access to the education provision to which he was entitled; his continuing health care needs had not been assessed; and his interim social care payments (from which I was paying for a day care centre and one overnight break a week) had stopped without warning or explanation. I had been living in a place of quiet despair about Dylan’s care all year but in April I wondered how much longer we could keep going.

An update

DSCF1340So here is the bloggy update: at the end of last month Dylan’s social care payments were reinstated (after repeated phone calls, emails and a letter to Nick Clegg, my MP) on an interim basis until the end of August. Although this is only temporary funding it is a huge relief; without it Dylan would not have been able to access any day care or short break provision over the summer.

This meant that I could focus on developing a more permanent plan for Dylan from September. The assumption, over the last year, is that this would need to involve a combination of education and social care. Progress with the development of appropriate education in the city is, however, slow and out of my hands. Will it be ready in time? I asked the man from the council couple of weeks ago. Yes, he reassured me; something would be available for Dylan after the summer. But how will I know it will be appropriate I asked if it doesn’t exist yet? Oh it will be, he said. This will all unravel in September, I thought to myself. I had no choice, however, but to plan on a promise.

Or so it seemed. But then last week (o halleluiah!) I heard that Dylan had been approved for continuing health care funding. Hopefully I am near the end of my long journey to secure appropriate support for Dylan as an adult. I can now review his overall care and plan something which meets his needs and will be permanent in the sense that there isn’t an end date (though obviously subject to regular review and re-approval). This will no longer mean having to develop appropriate provision under the guise of ‘education’ or trying to meet Dylan’s high support needs from an inadequate social care budget. I will not say that the time and effort spent trying to do that over the last 12 months has been wasted; other young people will benefit. It is simply marvellous that Dylan is finally able to access the support he needs; at last, hopefully, he can get on with his life.

The Elephant

DSCF1341This is breaking news; I hadn’t heard that Dylan had been approved for health care funding when I wrote about short break provision last week. As far as I was concerned, the breakdown of Dylan’s short break placement meant I would need to identify a new provider within the amount specified by Dylan’s interim social care budget. The news about Dylan’s funding may alter the approach to short breaks in the future but the current crisis is not about funding but rather providers.

I was so concerned to stay focused on the long view of short break provision last week that I dodged the current crisis a bit, or rather told myself that I wasn’t yet in a position to reflect. I can perhaps clarify; the short break providers have decided that they aren’t able to accommodate Dylan any longer given his needs. Dylan’s short breaks were located in a small residential house which wasn’t a suitable environment, particularly given the profile of other service users and staff capacity. As I noted in last week’s post I was sceptical from the outset about the suitability of the provision; however, the placement has broken down due to recent changes in Dylan’s behaviour.

Needs change and sometimes in a way that requires more not less support. This can be very challenging for parents but the reality is that placements can and often do break down for young autistic people. I’m very glad that Dylan’s short break provider was supportive and sensitive throughout: they communicated honestly; never criticised Dylan; focused only on their capacity to support; and responded to my request for emergency cover for this weekend so I can fulfil a long-standing engagement.

I can still see an elephant

Kent August 2012 163But why did the placement break down? Well it’s jumping. That doesn’t sound very challenging I know but actually it is. I’ve written a bit about Dylan’s tendency to jump here as part of a review of Naoki Higashida’s The Reason I Jump. If only Dylan’s reasons were the same. I don’t think they are but I don’t really know what does cause Dylan to jump. I’m baffled. Perhaps there is something to say about not having anything to say; the frustration and helplessness of trying hard to understand something and not being able to.

Dylan has always jumped a bit and in the past I’ve assumed it was frustration at not being understood or things not happening they way he expected or would have liked. I have worked on the assumption that behaviour is communication and if Dylan jumps then the onus is on me to try and find a way to understand what he needs. I like the expression ‘behaviour which may challenge’ as it acknowledges that what one person finds unacceptable may be tolerable to another. I have tolerated Dylan’s jumping in the past. I don’t mean to suggest that I never intervened; I have had a long campaign about not jumping in upstairs rooms. I have spent years flying up and downstairs to respond instantly to Dylan’s jumping. The behaviour may not always be appropriate but it has never been challenging in the past. Recently, however, Dylan’s jumping has become much more difficult in that it is out of control and, given his size and strength, potentially threatening to others and dangerous for Dylan. I’ve been responding to incidents on and off for three or four months now, without significant concern, but like the elephant in the room it is no longer possible to ignore.

I’ve started a chart. This makes me feel as if I have my toddler back again; it’s something I did when Dylan was little. So far the possible triggers for Dylan’s jumping include: Tuesdays; really sad scenes in certain films; change of routine; lack of routine; and change of support person. However, the GP suggests it could be neurological (the jumping is often preceded by a trancelike state). Equally, it could be his age: many teenagers and young adults develop behaviours that may challenge – it is not exclusive to autism. Twenty is a difficult age: that’s certainly when I was at my most difficult. The possibility that there could be an internal trigger makes me feel a bit helpless. If it were an external trigger – something in the environment – then if I could only identify it I could try and help. Currently, though, with incidents unpredictable but happening every other day and in the community as well as in the house, there are significant implications for Dylan’s support.

Becoming an elephant

I cannot help but be struck by the serendipitous timing of Dylan’s funding being confirmed amidst all this. The behaviour has implications not only for the type of support Dylan receives but also his weekly activities and risk assessment. The coincidence of need and funding has, for once, been helpful. I think I will need the strength and skin of an elephant to support Dylan through this. The sense that I can no longer reach or make a difference to Dylan when he is consumed by the need to jump is very difficult. I try to remind myself that many parents, at some point, experience such feelings of helplessness about supporting their growing child. As Dylan becomes an adult he will no doubt continue to need different types and levels of support; perhaps I have done as much as I can, for the moment, by securing the funding which will allow him to access this.

I remind myself that I am the person who loves Dylan the most and who tries to make his life the best it can be; he is probably looking to me to help him through this. One of the things which Dylan does during these incidents is grab at ears. Dylan has always tugged ears; this doesn’t necessarily have to be problematic but at the moment, because of the way he does it, it is. I used to believe that for Dylan this was as an act of love (based on snow white taking grumpy by the ears in a scene where she kisses him goodbye). Part of me thinks that Dylan pulls my ears at these times as an acknowledgement that he needs somebody to make it better, and that that somebody had better be me.

 

The photos were taken at zoos in Warwickshire and Kent during 2012-13.

From Cornerstone To Coping Stone: re-thinking short break provision

I intended to follow last week’s post on the benefits of short break provision with some reflections on the challenges. I could never have predicted how relevant this would turn out to be; Dylan’s short break provider decided this week that they can longer support him given his level of need. Instead of reflecting on challenge from a place of stability I am therefore in a place of uncertainty; this will inevitably have influenced the tone (and certainly the ending) of this post. A week is a long time in caring as well as in politics…

Coping with the luck of the draw

Mulberry Lodge 002The approach to allocating short breaks to families varies across Local Authorities but generally such provision is limited. In order to offer these more widely some Authorities earmark funding for one-off grants; these are welcome but it is regular breaks which can mean the difference between a family coping and being in crisis.

Because access to regular short breaks is limited it is dependent on referrals from education or social care professionals. Dylan was first recommended for ‘respite’ by his primary head teacher; he would benefit from a 24 hour curriculum one day a week, she told us, while we caught up on sleep. Looking back I realise how lucky we were to have her support; there are plenty of families in the same situation who do not get referred. Access to short break provision is also, however, a postcode lottery; as well as being lucky to get the referral, we were fortunate that there happened to be a children’s respite home near to where we lived.

From age seven, therefore, Dylan was allocated a ‘standard care package’ (one overnight a week and one weekend in six) in a purpose-built home with a small peer group. When he turned 18 Dylan was no longer able to access short breaks through children’s services. This was a difficult transition for Dylan made worse by the fact it was out-of-synch with transition from full-time education the following year (I’ve written a little about this here). I had hoped to ease this process for Dylan by establishing a similar pattern of short breaks to the one he was used to (albeit in an adult setting) for his final year of schooling. If I could get this in place, I thought, the new short break provider could help support Dylan when the time came to leave school. Achieving continuity in provision, however, proved impossible; I didn’t know it at the time but we were at the start of a journey into crisis.

Crisis? What crisis?

Mulberry Lodge 004As the time for Dylan to leave children’s services approached I became concerned by the lack of planning for transition. One morning, after numerous phone calls, I discovered why nothing was happening: Dylan no longer had a social worker. Why, I asked, did we not have a social worker? We had been de-allocated, I was told, because we were not considered to be a ‘family in crisis’. It’s flattering in a way, the man on the phone suggested. I can live without flattery, I told him, demanding that Dylan be re-allocated.

I soon discovered that ensuring Dylan’s short breaks continued would take more than a social worker. Ours wasn’t able to organise this, apparently. In my Authority the introduction of Personal Budgets and Direct Payments (about more of which in a future post) meant that Dylan would have to undergo a full assessment in order to ascertain what level of annual budget he was entitled to. I explained that Dylan didn’t need a budget; he was still at school and living at home with me. We only wanted one overnight break a week. The system, however, was inflexible; the only way Dylan could access short break provision was if I agreed to a full assessment.

Mulberry Lodge 007This was not the end of it. Once the assessment had been completed and a budget calculated I was told I had to draw up a Support Plan (about more of which in a future post). I assumed that social workers would advise on and recommend potential care providers but this was, apparently, no longer part of their role in my Authority. Instead, families were required to hire a Support Planner (and pay for this out of their disabled child’s already inadequate budget). I explained (again) that I didn’t need care services for Dylan as he was still at school and living at home; I only needed one overnight break a week. I would still have to submit a plan, I was told, showing how I would use the budget. But I wouldn’t be using the full budget, I pointed out. How much of it, I asked, could I spend on overnight breaks? There was no clear answer to this.

In time there were no answers at all; it was the summer holiday so people were on leave. Dylan and I were still without access to short breaks and feeling the strain. Not only did I not have an overnight break from caring once a week, I didn’t have any time off during the day either. I was on 24/7 duty and close to breaking point. I think I had been aware that Dylan’s short break provision was valuable  – certainly I made full use of the space it offered to focus on other aspects of my life. I’m not sure, however, that I realised quite how essential the support was in enabling me to cope. Now, having been de-allocated because we were judged not to be in crisis, that is exactly where we had ended up.

The gap

Mulberry Lodge 012Our descent into crisis took just four months. Not only did the professionals not realise this could happen, they failed to grasp that when a family are coping it may be because they are receiving support which enables them to cope. Removing support in the belief it is no longer needed can cause a house of cards to tumble.

The gap in short break provision had a significant impact on Dylan as well as me. While nothing could have taken away the sadness Dylan felt at having to leave his respite home, he may have understood the process better had there been something to replace it with. Appropriate transitional support would have enabled staff from the home to accompany Dylan on visits to a new provider and help him to settle in. Not only did this not happen, the gap in services meant that a routine which Dylan had followed for over a decade broke down. Two years later Dylan has not recovered from this badly-managed transition and still carries around a photo album recording his time at the home  (I’ve used some photos of it to illustrate this post).

Mulberry Lodge 023Although the gap in Dylan’s provision was caused by the inadequacy of transition services, the situation was compounded by a lack of appropriate providers of short breaks for adults in my Local Authority. While a key purpose of provision is to provide support for me, it is equally important that the experience is valuable for Dylan. The children’s sector had offered Dylan a relevant peer group, a range of adults (including male role models) and access to space, resources and activities which aren’t available in the family home. Because these were factors which had proved so successful for Dylan, I looked for them within the adult sector when trying to identify a new short break provider.

It soon became clear, however, that the model in the adult sector was independent living (where service users are placed singly or sometimes in pairs within regular residential accommodation). While this may be appropriate for some young adults, Dylan’s needs hadn’t altered; he still required a setting which gave him lots of space to burn off energy and which could provide the resources and activities from which he benefitted. This was not something that was available, however, at least not within my Authority or Dylan’s budget. At the end of the summer, five months after Dylan had turned 18, an amount which could be spent on short breaks had finally been agreed and a new short break provider identified. The new provider was based on the ‘independent living model’ rather than the residential home setting my instinct told me Dylan needed but, I told myself, perhaps he would cope.

A fresh crisis

Mulberry Lodge 016While Dylan’s overall budget was far more than he needed for one night a week I was uncomfortably aware that it wouldn’t be adequate once he left school. Dylan was settling in with his new short break provider when the social worker confirmed that his budget wouldn’t cover overnight breaks as well as full time day care.

 

What do I do? I wailed to the social worker one day. I don’t know what to do about this.

Which is more important to you? she asked. You need to choose.

I haven’t got a choice I pointed out. If I can’t get to work I can’t pay the mortgage.

Well then you’ll have to lose the respite.

But we will collapse, I said. I can’t manage without it.

Then you’ll have to get into crisis. If you get into crisis then we might be able to go back and ask for more money.

Another gap

Mulberry Lodge 020I couldn’t understand how moving from school to adult services meant Dylan would have to give up his short breaks – surely these needed to start increasing, if anything? Without short breaks, I explained to the social worker, I couldn’t manage; using all Dylan’s budget on day care so I could get to work would leave me exhausted. If that happened, I wouldn’t be able to take care of Dylan.

The economic arguments seemed to me to be obvious. With a small amount of extra support (for one night a week) I would be able to continue to look after Dylan at home. Without this support, I would not be able to cope and Dylan would have to be cared for by the Local Authority. Not only was this not in Dylan’s best interests it didn’t make economic sense to allow such a situation to develop; caring for Dylan full-time would cost the Local Authority four times the amount needed to enable him to stay at home. Parents who care for adults do this without any financial support; we are a hidden workforce. How short-sighted it seemed to me for the Local Authority not to support me to continue to care.

After I had exhausted all possible avenues I consulted a solicitor; I will share details of the legal action which provided a way forward (my original reason for setting up this blog) in a separate post. For the last year I have been living in a gap in the crisis: Dylan has been on an interim budget with a temporary Support Plan which combines some day and some short break provision. This has allowed me to get to work and enabled us to cope while negotiations about Dylan’s longer term care continue. However this week the gap in the crisis became another gap in provision.

Cornerstones and coping stones

Mulberry Lodge 035Dylan has been accessing short breaks with his adult sector provider for nearly two years; although the placement has broken down it at least provided a period of stability during Dylan’s transition from school. I am sorry that it hasn’t worked but my reservations about the suitability of the provision had remained and all the issues which could have been predicted (lack of peer group, lack of space, lack of staffing) did indeed emerge. Yesterday, I bumped into a friend (also the parent of a young man with autism); I have to believe, I told him, that I will find something better for Dylan – that this will lead to something good.

I don’t think this is about being positive so much as needing to be strong through the setbacks. Some years ago I received a gift which included a jokey list of personal attributes. One of them was ‘good in a crisis’ which I remember made me laugh. Oh but it’s true, my daughter said: you are good in a crisis. I dismissed it at the time but this week I’ve drawn strength from that thought, steeling myself for what could be more difficult days ahead. Sometimes I visualise myself as a cornerstone, holding and supporting Dylan. This week I’ve had the metaphor of a coping stone in my head instead: how it goes on last, as the final piece, and how, once in place, it protects foundations and walls, channelling away the rain. Short break provision is critical enough, for some of us, to be at the heart of our ability to cope: when it goes wrong it can shake us to our foundations but when we get it right it is our coping stone.

The need to re-think

Mulberry Lodge 036While short breaks may work well for some families and in some parts of the country, the approach to provision needs re-thinking, particularly for children and adults with high needs. It isn’t acceptable for families to have to get into crisis in order to receive the resources they need. Some things which would help include:

  • more transparent and equitable referral systems
  • simple transition points with more effective  support for autistic children and adults
  • simple alternative systems for families seeking temporary support
  • more proactive support from social workers
  • more variety in the type of short break provision available for adults (including residential homes)

Short breaks enable some parents to go on caring for their autistic child into adulthood – extra investment in this provision would surely be money well spent.

 

Related Posts:

Respite Or Short Break: what does it matter?

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

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

What we mean when we talk about respite short breaks

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

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

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

Spending time

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

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

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

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

Learning to let go

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

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

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

Making self matter

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

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

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

Going solo

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

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

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

In praise of short longer breaks

Bridlington retreat 027

South Cliffs, Bridlington

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

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

South Landing

South Landing

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

Bridlington retreat 038

Flamborough Old Lighthouse

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

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

 

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

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All images, including a selfie, taken by me.

That Fishy Feeling: autism and empathy

MonksInSouthChoirI like to read books about silence and living silently because these help me to reflect on how Dylan might experience the world. Often these books are located within the categories of religion and spirituality. From the book I am reading at the moment (Silence: A Christian History by Diarmaid MacCulloch) I have discovered that in 11th century France the monks at Cluny developed simple hand signs to facilitate silent communication. MacCulloch describes the signs as a system rather than a language due to the lack of grammar and syntax. However, he notes, they: ‘enabled work and life to proceed efficiently without speech’ (2013, p. 97). Signing was confined to three areas of the monastery – the kitchen, the library and the liturgy – so the Cluniac signs reflected the needs of these settings. There was for example:

…a rich array of words for different types of fish, but no sign for meat, which would not have figured in the monastic diet. (2013, p. 98)

I enjoy the irony that today I’m using hand signs to facilitate Dylan’s speech (I am using makaton, a language programme based on British Sign Language and aimed at people with learning disabilities). Wanting to build the use of signs into our life in an authentic way, one of the first words I looked up in my core vocabulary book was Pub. I flicked through the pages to where I thought it would be. No sign. I turned to the index. No entry. Sign systems and language programmes, today as in the 11th century, are functional and develop in response to the needs of the community; as makaton is primarily educational and aimed at children, it does not prioritise the pub.

There is, however, a sign for fish in the makaton book. In fact there are two signs for fish: dead and alive. While this is hardly the array used by the monks at Cluny it was, I thought to myself, more than Dylan and I would need.

One, Two…

We are vegetarian; Dylan from birth and me since my early teens. At a time when it was unusual not to eat fish or meat (at least in the community where I was raised) it required some determination to resist the pressure (and ridicule) of family and friends. My arguments at the time were largely moral and economic but I had a strategic reason too: I hated fish.

London Lions 040In the 1970s, at the school I attended, you did not get a choice of school dinner; there was a set meal and that is what you had. On Fridays it was fish. Not only was there no alternative, the amount you ate was monitored; if you wanted to leave any food you had to put up your hand and ask. A dinner lady would make her way across the dining room to you, inspect what was left on your plate, and decide whether or not you were allowed to stop eating. We tried everything we could to get rid of what we didn’t like: hidden under a leaf; cut to appear less than it was; re-distributed around the table so the request to leave it could be shared. The dinner ladies’ eagle eyes never missed a trick: what’s that under your chips? You can leave those but eat the fish underneath please.

Putting fish in my mouth made me feel sick; I gagged at each swallow. So I developed ever more desperate strategies. On my knee. Up my sleeves. In my pockets. Once, realising I wasn’t dressed in clothes with hiding places, I came up with what I thought was genius. I had worked my slow way through half the piece of fish I had been given. There was too much still on my plate, I knew, to be sanctioned for leftovers. When the backs of the dinner ladies were turned, I tore some hair from my head and positioned it on what remained of my fish. My hand went up: please can I leave this fish, it has hair in it? The dinner lady ran her eyes over my plate and sniffed. I’ll take that off you. You’d better go and get another one. Be quick now; there isn’t much time before the bell. Eating 1.5 fishes that day went into the log of horrible things that had happened to me. It wasn’t long after that I announced I had become vegetarian.

Three, Four…

Apparently we have a penchant for the foods that our mothers ate during pregnancy. Our parents also pass their own food preferences to us through the meals they prepare in the home. I don’t remember being given fish to eat as a child and perhaps it was its unfamiliarity when I encountered it at school which caused me to resist. It could equally, however, have been dad’s tropical fish.

London Lions 016I’ve never been sure whether fish qualify as pets but I can imagine not wanting to eat something which I associated with dad’s fish. My mother didn’t consider them pets however; she banished the tank from the house. I remember hanging around the garage, where it was kept, mesmerised by the sound of the pump and the blue light. Once, dad removed a pregnant guppy from the tank to protect the babies from being eaten by other fish when they were born. He put the guppy in a Pyrex bowl in the airing cupboard where he said it would be safe and warm. The airing cupboard was in my bedroom so this was our secret; my job was to move it if mum showed any sign of opening the cupboard door. One morning I found the pregnant guppy had flipped out of the bowl and was dead on one of mum’s clean towels. I was inconsolable.

Keeping pets, we are told, not only helps young children to develop skills associated with small animal care but develops empathy. I have known parents who don’t care for animals but who keep them for the sake of their child’s social and emotional development. One such friend argues that the only reason for a pet is to teach a child about death . Perhaps the pregnant guppy had a purpose after all.

Five…

London Lions 020Having an autistic child in the family can have implications for keeping pets. Some parents of autistic children have written movingly about the positive impact of animals on their child’s development while others report animal-related fears and anxieties. Because Dylan falls into the latter of these groups I have been careful about introducing pets to the home. In order to give my daughter the experience of caring for something, however, we bought her some fish . My daughter used to collect the metal figures which museums sell. She also used to enjoy (and had a talent for) hand painting them. When we bought my daughter some fish, Dylan decided that these figures had to be thrown into the tank with Aristotle and Archimedes.

Dylan has always taken pleasure from throwing things into water; I think he enjoys the light and sound and watching the water move around an object (I’ve written about this here). For many years Dylan would throw stones and pebbles into the toilet; dropping metal figures into a fish tank therefore didn’t seem so strange to me. Not surprisingly, however, my daughter became upset every time she had to fish one of her figures out of the tank. Understandably, she was even more upset when she went in her room one day to find Archimedes was dead.

My daughter claimed that the toxicity of paint leaching into the water from her metal figures had killed her fish. In an age of lead-free paint I was sceptical but couldn’t rule out the possibility that Archimedes had been hit by a Viking. It can’t have been an easy life for a goldfish, being periodically bombarded by fistfuls of soldiers. Archimedes was buried under the Cricket-Bat Willow tree, and cyclamens planted out to mark his grave. This was my daughter’s first dead pet: job done I thought to myself.

Once I Caught A Fish Alive…

London Lions 034Later, I remembered that there had been an incident with a goldfish earlier in Dylan’s life. When he was four Dylan went to a local mainstream nursery for a couple of terms. He was part of an integrated resource but transitioned through the main nursery to specialised activities. The nursery had a pet goldfish which attracted Dylan’s attention. Dylan’s aim, the whole time he attended that nursery, was to remove the lid of the tank so he could splash, throw or catch the goldfish.

One day the class goldfish was missing. Dylan’s teacher, noticing Dylan was holding his face oddly, discovered the goldfish carefully concealed in his mouth. I say ‘carefully’ because it was alive; Dylan was not, it seemed, intending to swallow. At the time I found the incident vaguely amusing but also horribly demoralising. How could Dylan do that to the class pet? Didn’t he care about the fish or the feelings of others? Was this the autistic lack of empathy I had read about?

Six, Seven, Eight, Nine Ten…

Inverness 2014 052Over time I came to believe that Dylan had an excess rather than a deficit of empathy (I have written about this here). I cannot know for sure what Dylan feels of course; the observation is based on my sense-making of incidents, events and moments in his life. Living with autism is a bit like being a detective. I spend my time hunting for clues. I assemble pieces of information which don’t fit together but I keep hold of them in case I can use them later. I have bits of metaphorical string and paper stuffed in drawers all over. Although I try not to throw anything out I sometimes forget about things or a drawer gets stuck. Sometimes, though, a new experience acts like Open Sesame and things come together with new meaning under the sudden light. And something happened recently to make me re-think Dylan’s interest in fish and affirm my belief in his capacity for empathy.

Last month, during a short railway holiday, Dylan and I were in Mallaig. At the harbour we passed a fish warehouse and I suggested to Dylan that we stop and watch fish being unloaded and packed. As we approached, however, I felt Dylan stiffen next to me; he strained hard against my steering arm, pulling me away and back towards the boats. I thought Dylan might be temporarily changing route to avoid a dog but he persisted. The suddenly I recognised what was happening; Dylan’s eyes were closed, his head turned to one side, his body stiff. While Dylan reacts to sensory overload with some of these symptoms, his reaction to the fish warehouse in Mallaig was identical to the one I had been battling with for years in another location: this was Dylan’s supermarket behaviour.

Then I Let It Go Again

London Lions 046Dylan has always struggled with supermarkets. When he was young I quite often had to be rescued from shops where Dylan had gone into meltdown. When I say supermarkets I don’t mean all of them; one of the things which has puzzled me over the years is why some are a trigger and others are fine. Because Dylan’s behaviour wasn’t consistent I persisted with supermarket shopping but at some point gave up and shopped alone or online instead.

In the last few years I’ve reintroduced supermarket shopping partly out of necessity (as a single parent) and partly because shopping for food is a life skill which Dylan needs. While it is not something we do often, every four to six weeks Dylan and I go to a supermarket. Mostly this has gone well but in two of the five supermarkets we use Dylan gets distressed – not to the extent he did when he was younger but enough sometimes for us to change plan or abandon. Dylan’s physical reaction at these times is identical to the response I got to the fish warehouse.

In Mallaig I had found the missing piece to the supermarket puzzle: the two supermarkets where Dylan gets distressed have fish counters (the others don’t). While I don’t use the fish counters, in one of the supermarkets the fresh grapefruit juice is adjacent to it and in the other supermarket the fish counter is at the end of the fresh pasta aisle. Dylan has no interest in grapefruit juice so refuses to even accompany me down the aisle in that particular supermarket, requiring me to sprint and grab the juice while looking over my shoulder, not taking my eyes from Dylan. In the other supermarket Dylan’s desire for pasta is enough to get him past the fish counter, but in obvious distress. Looking back at supermarkets I have been rescued from, I am pretty sure there was always a fish counter.

London Lions 032So I pieced this together in Mallaig in the sudden light. I thought about how Dylan loves living fish, recalling how on a trip to London Zoo he had spent ages in the Aquarium. I’m sure that part of the attraction for Dylan that day was finding Nemo; I’ve argued elsewhere that Disney films have played a major part in his development. Dylan is especially drawn to underwater sequences with fishy, swimmy things; he’d hate it, I’m sure, if the fish he loves stopped swimming.

I can see now that a fish counter would be pretty challenging for Dylan. I am not including a photograph of one here because this is a blog for Dylan and he likes to help choose and look at the pictures. I am going to ask you, therefore, to try and visualise a fishmonger’s or supermarket fish counter. If you enjoy eating fish and the image is a positive one for you, try to consider why it might be distressing for Dylan. I don’t know whether or not Dylan understands the concept of death, but perhaps he can smell it. I wonder if perhaps the eyes of the fish would trouble him. Mostly, though, I imagine that Dylan would be upset that the fish – which he loves so much in Disney films and picture books – are not swimming. Dylan is sad, I suspect, because the fish do not seem happy. This, surely, is empathy?

It has taken me a long time to understand something that Dylan has been trying to tell me for years. I know that Dylan communicates through his behaviour but I don’t always understand what it is he is trying to say. Having two makaton signs for fish could, I now realise, be useful after all.

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References:

MacCulloch, D. (2013) Silence: A Christian History. Allen Lane
Makaton Core Vocabulary: Symbols Pocket Book 1
Makaton Core Vocabulary: Signs Pocket Book 1

 

Images:

Monks in south choir at Cluny wait silently,  http://www.aedificium. org
Fishy photographs taken  by me at London Zoo Aquarium (Easter 2013) and in Mallaig (May 2014).

 

The Best Words In Their Best Order: language and autism

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

The Language Barrier

NPG 192; Samuel Taylor Coleridge by Peter Vandyke

Samuel Taylor Coleridge

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

NPG 58; John Keats by Joseph Severn

John Keats

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

Three Writer’s Maxims

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

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

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

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

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

Flipping The Maxims

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

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

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

Fingerman

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

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

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

 

References:

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


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

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