Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

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IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

*

When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

*

The piece I had planned to write (which I referred to in my previous post) is coming soon…

That Fishy Feeling: autism and empathy

MonksInSouthChoirI like to read books about living silently because they help me to reflect on how Dylan might experience the world. From the book I am reading at the moment I have discovered that in 11th century France the monks at Cluny developed simple hand signs to facilitate silent communication. The signs are described as a system rather than a language due to the lack of grammar and syntax. However  they: ‘enabled work and life to proceed efficiently without speech’ (McCulloch, 2013, p. 97). Signing was apparently 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:

…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 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 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 educational and aimed at children, there is no 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 to be sanctioned as 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 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. Dylan’s reaction to the fish warehouse in Mallaig was identical to one I had been battling with for years in another location: the supermarket.

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 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.

London Lions 029

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.

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 and social justice issues. 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

Tap Three Times: communicating without speech

owl babiesAlthough my 19 year old son is ‘non-verbal’ he takes an interest in a range of language-based activities. In describing Dylan as non-verbal I wouldn’t want to give the impression that he is silent; on the contrary he is very vocal. Few autistic people are completely ‘non-verbal’; most children and adults have some recognisable sounds which they use to communicate even if they tend not to use speech. It has been suggested that ‘restricted-verbal’ is a more accurate description than non-verbal. I’d say that’s a fair description of Dylan’s relationship with speech at the moment; he has a range of creative strategies which he uses pretty effectively in order to meet his needs and he enriches these with some limited verbal communication.

Any parent who has observed their child developing language will have witnessed the role of clapping, turn-taking, repetition, chanting and rhyme in the development of speech. As a poet, also, I know the power of language and the way in which these patterns can charm themselves into the brain.  We know that these are really helpful linguistic resources to offer babies and toddlers in the ‘pre-verbal’ stage so I’m not really surprised that the things which seem to trigger Dylan’s attempts at speech are picture books and songs with rhythm and rhyme.

Dylan’s current vocalisations include include ‘songs’ and calls, onomatopoeic sounds and a range of repetitions and habitual noises which are not unlike a baby’s babble. He left school last summer and at the moment I’m looking for an adult education placement so that specialist staff can continue to support Dylan to develop his communication.  Last week a ‘man from the council’ came with me to visit a potential provider. During the drive I explained to him why it was important that Dylan continued to access this sort of provision. My son, I pointed out, was showing signs that he was becoming more language-aware.  The developmental delay associated with Dylan’s learning disability and autism was significant but he was making progress and I was convinced he had potential for more.  “If you look into his eyes”  I said to the man from the council, “you can see how alert he is …

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A memory.  It is the Easter following Dylan’s birth and on the first warm day of the year I have driven to Charleston House on the Sussex coast . Dylan is just over a month old and dressed in a blue striped suit and sun hat. I am sitting in the gardens with the baby beside me in the grass. Two sensibly-dressed middle-aged women walk past and glance at Dylan: “what an alert baby you have”, one of them exclaims, “you must talk to him a lot?” 

charleston

Charleston House, Sussex

Two years later, when Dylan was assessed for autism, I thought about the women at Charleston House. Perhaps the memory helped me to deny there was an issue with Dylan’s language development (even if I acknowledged his autistic behaviours). I thought my clever toddler was having a laugh. I remember one night whispering to him: “come on Dylan – I know you can talk – just one or two words –  that’s all  – just something to show you can.”  I was scared we were on an elevator that we wouldn’t get off; that Dylan would receive a forever label.

As it turned out the professionals involved in Dylan’s care were not keen on labels.  They weren’t useful, I was told, unless they helped to access resources.  So without any assumptions about Dylan’s language development (though with an ‘it looks like autism’ verdict) we joined early intervention groups with other families whose children were causing concern. I had given up on Penelope Leach’s ‘From Birth to Five’ at some point during Dylan’s first 18 months. The baby milestones she described seemed less and less relevant to Dylan and increasingly unhelpful. So when I discovered a network of parents accessing children’s services, they became my new reference point.

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Parents  of children undergoing assessments for development delay compare their children with others in the same way that parents of ‘neurotypical’ children make comparisons at play dates.  This can be comforting, at least temporarily, as it helps establish a new norm; saying or hearing the words ‘oh my child doesn’t either’ makes your child part of a group and this sense of belonging, and of similarity instead of difference, is helpful. However, just as there can be peer-generated pressures among parents of mainstream children – whether a child can draw a recognisable human being by a certain age, count to 20 or write her own name for example – so there can be peer-generated pressures among parents of children with special needs.

Because these pressures almost always arise from a perception that access to resources are performance-driven and limited, they tend to create stress. On the run-up to Dylan reaching school age, I felt under pressure from a commonly-shared belief among parents (corroborated by some professionals at the time) that in order to secure a place at the sought-after local specialist school, Dylan had to be out of nappies and talking before he was five. Also difficult was the wisdom circulating that: ‘if your child isn’t talking by five he probably never will.’

Having established a ‘new norm’ it was hard to watch as other children who had appeared similar to Dylan became verbal and made progress in leaps and bounds.  But these developmental surges also gave me hope; if another child could undergo such apparent transformation, then so could mine. In time, however, I realised that Dylan had his own trajectory; he made progress, but it tended to be slower than other children. Dylan’s learning disability was far more significant than I’d imagined initially and, it transpired, his ‘communication impairment’ was severe.

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Dylan was not talking by 5 years old and at 19 is still classed as ‘non-verbal’.  Although everyone with an autism diagnosis experiences difficulty with communication to some degree, the gap between the non-verbal and highly verbal adult can create a sense of it being a very wide spectrum indeed. Recently I was part of a small lobby group which met with Nick Clegg  (my constituency MP) to discuss adult services for autistic people in my area. In order to raise  awareness of the spectrum nature of autism the group included myself (as a representative of someone who also has a learning disability and is ‘non-verbal’) and an able and articulate autistic woman. After the meeting  I was chatting about Dylan and must have used language sloppily as, at some point,  she quite rightly interrupted to remind me that while Dylan might not be verbal, it didn’t mean that he couldn’t communicate: “Someone with autism is communicating every time they get angry”, she told me.

Dylan doesn’t often get angry but he does sometimes get frustrated.  I think that this frustration is frequently at his failure to make himself understood – some of Dylan’s behaviour (such as standing jumps) is Dylan trying to communicate that communication isn’t working.  When communication between us does work it is often based on me intuiting what Dylan feels, needs or wants from his actions. At a very basic level Dylan uses ‘motoric communication’. This means that he uses my body as an extension of his own.  Dylan is adept at leading (or, if I am resisting, pushing and pulling) me to where he wants to be, or to show me what he wants. This usually involves him manipulating my right arm, but sometimes he uses my finger to indicate what he wants or to show me the help he needs. This is a mode of communication which Dylan has been using since he was a toddler and which I try to discourage now he is physically much stronger than me and capable of more sophisticated strategies.

Communicating with me through representations of an action, rather than through the action itself, is one such strategy. Dylan can recognise and use photographic and representational  images to communicate and is confident with rebus symbols, picture exchange systems, visual timetables and increasingly with communication software. Of course pictures are not always available but Dylan is good at improvising through ‘objects of reference’. If Dylan wants to walk he might bring his coat or shoes, for example, and he uses a particular backpack to request information about the daily schedule.  As well as actions, pictures and objects, Dylan sometimes uses gesture to communicate. Although he doesn’t sign, Dylan increasingly gesticulates with his hands and even at times shapes a point. There are different kinds of point; an ‘indicative point’ might be used in response to a question (‘Dylan which T-Shirt do you want to wear?) while a ‘declarative point’ is more of a statement than a response and important in that it can initiate communication. The point I am most interested in, however, is one which ‘shares the world’ with me; if Dylan points in order to show me something (a duck for example) then this is a high point of my day indeed.

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A memory.  It is a winter morning and I am loading Dylan into the baby seat in the back of my car. He is around 20 months old. My new partner is hovering on the pavement to wave us off. I get into the driver’s seat and turn round to Dylan: “Look” I say pointing at the face in Dylan’s window, “wave bye bye”. Dylan looks blank. His arm lies limply in his lap, then he half-lifts it in a sloppy arc.  I think to myself it is hardly even  a wave…

I had noticed something important that morning. Within a few weeks of this memory, Dylan had lost his non-verbal communication completely and it would be many years before I saw him wave again. However, I remembered Dylan’s earlier use of gesture and had clear memories of him sitting on my lap pointing to things in his picture books and waving goodbye to people. Only very recently have these gestures started to return. Dylan’s new wave is fast and flappy but he uses it appropriately and knows what it means, and his indicative point – with a flamboyant final flourish – is increasingly reliable. He has also developed some gestures which are all his own; three taps on his chest or mine means ‘I love you’ for example…

owl babies 2Tapping three times on your chest is an action Dylan has based on a gesture I make when reading the last page of Waddell’s ‘Owl Babies’. In the story the mother owl returns after a night’s hunting to her three owlets and the smallest, ‘little Bill’, jumps up and down on his branch declaring: “I love my mummy”. Rather than bounce up and down while reading to Dylan, I developed the action of three taps on his chest and over the years Dylan has copied this gesture.

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Increasingly I see in Dylan an awareness of his own limitations and difficulties. When he was younger I thought I saw this in his more able peers but felt that Dylan was to a large extent free of self-awareness and therefore of any sense of difference or failure.  Recently, as Dylan has made more attempts to communicate, I have noticed how disheartened and anxious he can become if I don’t understand him or respond positively. If he attempts a word I don’t recognise, for example, and I ask him to say it again, he will often retreat to a quite different but familiar word  – usually ‘The Queen’ (as in Snow White). Given the lack of clarity in Dylan’s speech and the individual nature of some of his gestures (such as tapping three times), establishing a system of communication with which Dylan can be understood in the community as well as (with luck and patience) the home, is surely worthwhile.

Any limitation on the effectiveness of Dylan’s communication probably has more to do with our inability to understand than with Dylan’s intent to communicate. Clearly, however, it would be ‘a good thing’ if Dylan could be helped to develop more speech as that would give him some independence in the community and increase his potential effectiveness as a member of society. I don’t know whether Dylan’s increasing interest in language will continue or not, but – as I explained to the ‘man from the council’  – I’m fairly certain there are things we could and should be doing to help. In England the policy on funding educational support for post-19 adults is in flux but the new 0-25 SEN code could potentially offer such an opportunity.