Christmas In A Cave

wp_20161219_003It’s a while since I posted an update on Dylan’s progress. Reflecting on it today I am mostly struck by how well things are going. Christmas isn’t an easy time if you are autistic but Dylan seems to have taken it in his stride this year and coped with the changes in routine which a holiday brings. I suspect that is testament to Dylan’s increasing maturity as well as to our growing understanding of what helps Dylan to manage times of challenge and stress.

We have realised the need to organise Dylan’s weekly schedule, for example, so that it always ends on the day he comes home. What this means is that Dylan’s week is not always the same as a calendar week; awkward for fitting in with staff rotas and fiddly to customise the schedule columns, but worth it to avoid the stress it causes Dylan if the week doesn’t end at home. A calendar week, after all, is a construct and utterly meaningless to Dylan; we have to keep the rhythm of time which Dylan feels.

It took a while for us to grasp what was causing Dylan anxiety about his schedule. After I realised, I thought about how frustrating it must have been for Dylan, trying to communicate to us what he wanted. His attempts to show us had involved such things as him asking us to cut the last day off his schedule. When we had done that he would often want it re-instated. We puzzled away at Dylan’s to-ings and fro-ings about the end of the week. Perhaps we haven’t completely understood what he wants but I’m fairly optimistic that we’re in the right area. Dylan has been pretty patient with us while we’ve been trying to figure this out ūüôā That’s one of the things I had in mind when I referred to his ‘increasing maturity’.

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picture1Dylan seems to have coped with the loss of E, the key worker who settled him into his residential setting and who he had come to love. There were a few incidents in the immediate aftermath of E leaving (to take up a new post) and I was a bit concerned about Dylan. Dylan has experienced the loss of a number of key people from his life over the years, something which has caused him huge sadness and grief. “Mummy will always be here for you”.¬† I sometimes tell Dylan when I think he is grieving. It can’t always be true, I know, but it seems to help.

So after E left I tried to be more present for Dylan. I resumed my mid-week visits to Dylan, for example, and we went to Pizza Hut for dinner as we had when Dylan first moved to the care home. This seemed to help, perhaps through the association with a period of change which Dylan had already successfully negotiated.

I will be grateful to E for many things but one legacy in particular is her focus on equipping Dylan with strategies for self-managing his anxiety. While we cannot stop Dylan from experiencing anxiety, she explained, what we can do is help him to recognise it and adopt methods for de-escalating it. Tearing paper, for example, is something which seems to calm Dylan and he now has a ‘ripping box’ which he can be directed to when he becomes anxious. Sometimes Dylan doesn’t get to the ripping box in time and tears one of his books or his weekly scheduled instead – but as E pointed out to me, we can always print out another schedule and replace a book, if necessary.

Dylan did quite a lot of ripping in the aftermath of E leaving and I tried to reassure myself, during this time, that this was a positive behaviour and that Dylan was managing his emotions. The extent to which this represents a significant development is clear when I recall that previously Dylan would have become physically aggressive at such times.

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untitledAs well as using methods for coping with anxiety that have been suggested to him, Dylan seems to be adopting strategies of his own. He has always been very attached to a photograph of my mum which he keeps by his bed at his residential setting and brings home at weekends. Recently, Dylan has been carrying the photograph with him on day trips as well.

Sometimes it seems to be enough for Dylan that he has the photograph of his Gran with him and she remains in his backpack during the trip. Other times, however, Dylan gets the photograph of my mum out of his backpack and places it next to him. I’m curious that these times are often in locations which Dylan probably associates with my mum. One day we went to the bookshop, for example, and Dylan placed the photograph of mum on a beanbag then took from the shelves two books which they would often read together: Handa’s Surprise and The Mousehole Cat. I liked the idea that Dylan was sharing the books with his Gran and that he was finding some comfort in this.

I think of the photograph of my mum as an ‘object of reference’ for Dylan. I could consider it inappropriate for him to take it out with him into the community, but I think it is helpful for Dylan and I prefer to let him use it as an emotional support. My guess is that it’s a response to a change in key worker; Dylan is adjusting to the loss of E by referring back to other instances of change and loss. I assume that in due course he won’t feel the need to carry the photograph with him, always.

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christmas-eve-2016-017I miss my mum as well, of course. Supporting Dylan with his grief helps me to manage my own, especially at times when we are vulnerable, such as Christmas. Dylan carrying the photograph of his Gran around with him enables me to talk about her in a way I might not without such an object of reference for grief.¬† “Your Gran used to like to come here for Christmas Eve, didn’t she?” I said to Dylan as we walked around Castleton village, as we do every year, on the night before Christmas. It’s one of her traditions which I’ve kept going in the belief that continuity helps Dylan to develop a sense of his own life history and place in the world.

Castleton is famed for the caverns which lie beneath its limestone hills and on our Christmas Eve visits we always walk up to the mouth of Dylan’s favourite cave, The Devil’s Arse (or Peak Cavern, as it is also known). Dylan has a particular interest in caves; he likes the blackness and the acoustics, I think. If you have sensory issues, a cave is probably quite a comforting place to be. There is something about cave space which absorbs chaos. So a visit to Castleton, which isn’t far from where we live, is a popular outing with Dylan and we quite often go there to take a trip down a cave. Not on Christmas Eve, however, as it is closed for regular visits. Instead, a Christmas concert takes place inside the cave: a brass band, mince pies and mulled wine, song sheets and family singing. As this completely undoes the usual charm of the cave, it’s not the sort of event I would ever plan to take Dylan.

christmas-eve-2016-015The concert takes place in the early evening so when we arrive at the cave in the late afternoon the gate is barred and I manage to explain to Dylan that we can’t go in as it is closed for Christmas. When we arrived this year, however, it was to the hum and bustle of an earlier-than-usual concert about to start. The cave was lit like a ship and inside people were seated as the band tuned up. Curious, Dylan pulled on my arm. “You won’t like it Dylan”, I said. “There will be music. And babies.”¬† Dylan continued to pull me over to the gate. The doorman explained there were no tickets anyway: it had sold out in November and two tickets that had been returned that day had been reallocated within five minutes.¬† Dylan, of course, didn’t understand this. He pulled on my arm. “Let’s go, Dylan”, I said. But we were going nowhere – Dylan wanted to go in. I would just have to let things unfold, I decided, and deal with whatever happened.

christmas-eve-2016-007We were given the nod just as the concert was about to begin. This was probably helpful in that we were able to find seats in the far reaches of the cave, beyond the last row of seats. Dylan doesn’t like mince pies but he’d taken the one he was offered and now proceeded (to my amazement) to eat it. The next surprise was that Dylan didn’t cover his ears when the band started up. Another surprise when he started clapping, spontaneously, at the end of the first carol. And then, glory be if he isn’t swaying to the music, stamping his feet and flashing his best grin at me. And so we spent Christmas Eve in a cave – or at least an astonishing 50 minutes of it, leaving only just before the end, when Dylan decided he had heard enough. I was thrilled by the experience, not just for Dylan, but myself: I got to go to a carol concert this year ūüôā

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christmas-day-2016-004This was the highlight of my Christmas but there have been other things to enjoy too. Dylan and I spent Christmas Day, as ever, out in the Peak District with a picnic. This year I had chosen Stanage Edge, hankering after a high place. As Dylan’s visual programmes are produced in advance, I have to make decisions about how Dylan and I will spend our time a week before the activity. When I opted for Christmas Day on Stanage Edge, what I didn’t know was that Storm Barbara was due to make landfall and would be passing through the Peak District.

christmas-day-2016-006Our walk that morning would best be described as ‘challenging’; we inched our way along the edge, battered by high winds. At some point I became anxious that we could be blown over the top so spent most of my energy trying to draw Dylan inland through the marsh and bog I would normally steer him round. “Picnic”, Dylan asked hopefully. If it’s on the schedule, not even a storm can blow Dylan off course…

Dylan certainly extended his vocabulary this Christmas.¬† “Wee” (wind) he said to me repeatedly.¬† “Wee, wee”. “Yes Dylan”,¬† I replied, it’s very windy today.” As we picnicked under a sheltering rock I smiled at the thought that the storm was called Barbara. That was my mum’s name. “It’s your Gran”¬† I said to Dylan as the wind whipped his Santa hood up around his head – “It’s your Gran wishing you happy Christmas”.

Season’s greetings to those who celebrate

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Happy New Year

Thanks for following Dylan’s Story in 2016

The Familiar And The Strange

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Arriving

It’s not surprising that Dylan likes Premier Inns: the rooms are identical, the facilities standardised and the buildings similar in style. Such predictability¬† can be enabling; I’m not sure Dylan would be as relaxed as he is away from home without the reassuring familiarity of a ‘moon hotel’. When we arrived at a¬† Premier Inn last weekend, however, I was shocked; the twin room wasn’t configured in the same way as those we had stayed in previously and the narrow space between the beds made them feel more like a double.

In the context of a mother and adult son the room wasn’t acceptable. Dealing with the situation, however, was potentially tricky; Dylan was already looking around, working out where to put his things. If I were to do something about the situation I had to act quickly. I managed to persuade Dylan to leave bags unpacked while we returned to reception. It was a holiday weekend and as I had struggled to find accommodation for the evening I wasn’t confident about my chances but, keeping my voice cheery so as not to make Dylan anxious, I explained the problem with the room.

Once again I was struck by how improved autism awareness is; the staff instantly understood the situation and dealt with it beautifully, identifying  potential solutions and involving Dylan in the process.  Would Dylan like to view an alternative room, one of the receptionists asked? We followed her up the stairs where we were delighted to find a larger room with a bed by the window for Dylan. I am sure that involving Dylan in this way helped him to understand the situation; had I simply negotiated the room change at the desk  then returned to the original room to retrieve our bags he would probably have thought we were leaving and become anxious.  With the visual support of visiting the alternative room, however, Dylan accepted the change without a problem.

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Departing

This turned out not to be the only disruption to routine Dylan had to cope with; returning to our room after a meal out ¬†I discovered I couldn’t get Brave to play on his ipad mini. As I mentioned in my last post, the ipad mini is a new acquisition. I haven’t used it for Facetime with Dylan yet as I am still trying to get myself up and running with Dylan’s old ipad.¬† I thought, however, that I’d managed to transfer Dylan’s music and films across to the mini and that all was well. ‘You can watch a film on your new ipad when we get back to the moon hotel’ I had said to Dylan as we left the restaurant.

Fortunately I managed to distract Dylan with a bath when Brave wouldn’t play as promised. The next morning I managed to head off a repeat request with the suggestion of breakfast.¬† I had figured out that the films Dylan used to have on his old ipad were ‘in the cloud’ on his new mini; rather than available to him at all times these are now dependent on Dylan having an Internet connection capable of downloading them (which the hotel’s free Wi-Fi service was not). This is not ideal and will be very confusing for Dylan who was previously able to watch whenever he wanted. For his technophobe mother, meanwhile, it’s another argument against life’s unremitting upgrades.

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York Minster

Last weekend’s ‘moon hotel’ was in Chester, a place neither Dylan or I had visited before (except for trips to Chester Zoo which hadn’t involved driving into the town centre). ¬†When introducing Dylan to new¬† experiences it is useful to make a connection with things which are already familiar. This is true of all learning, of course, but seems to be particularly the case for Dylan who embraces new experiences happily, with confidence, when they are grounded in something he already knows. So my reason for taking Dylan to Chester was the town’s similarity to York, Dylan’s favourite place in the world.

As I have noted before,¬† Dylan has been visiting York for years; he recognises and collects information about York, says the word ‘York’ beautifully, and spends much of his time looking at pictures of York.¬† Part of this attraction is the Minster but recently I’ve realised that of even more interest to Dylan are York’s city walls. We have developed a hand sign for city walls which involves drawing a horizontal circle in the air; ‘York’ Dylan says to me optimistically, tracing a flat ring with his finger. Surely, I told myself as we drove into Chester last Saturday morning, Dylan would love it; there was a cathedral, a railway, a river and city walls, just like at York.

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Chester Cathedral

Serendipitously we found a mobility car park (hats off to Chester Council) at the entrance to the Cathedral and city walls. Dylan was on alert; he had the quick look about him that means something has caught his attention.¬† As I switched the car engine off I turned to him and drew a circle in the air; ‘there are city walls here’ I said. I didn’t need to tell Dylan; he had already clocked them. ¬†As we emerged from the car park into a stained glass dazzle of light I wondered if Dylan might head into the Cathedral first? But no:¬† off he tore, anti-clockwise, around the walls.

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City Walls, Chester

Perhaps Dylan likes city walls because the way they encircle an area is intuitive to him and feels comforting.¬† When Dylan was very young – before we realised he was autistic – one of the things he did was stake out perimeters. It’s quite a common behaviour among autistic children: lining objects up around edges, creating boundaries. Before I knew it wasn’t playing I used to smile at Dylan’s imaginatively-placed bricks and cars and tea set pieces. The first time I remember puzzling at it was on holiday in France when Dylan was 16 months old.¬† As we only had a few toys with us Dylan emptied the kitchen cupboards of pots and used those instead.¬† I have a memory of watching him scratch his head like an old man as he surveyed a border he’d built around a room with cups and plates and saucers. There was something about it that didn’t seem right.

Looking back I can see that being taken into a new environment with differently-configured space must have been very confusing for Dylan. With no knowledge of his autism, I wasn’t looking out for Dylan or mediating the world for him as I do today. For the undiagnosed child, the world must seem a very scary place indeed. Now I can smile because I understand that ¬†Dylan’s attempt to impose order on the holiday cottage was smart; he found the pots, on his wobbly toddler legs, and did his best.

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River Dee, just outside the Walls

Later, I would watch Dylan mark territory with his body: pacing the edges of a library or art gallery; establishing a boundary in a park or field; setting himself limits when visiting friends. ‘It’s alright’ I would say, ‘once Dylan fixes his boundary he’ll keep within it’. It is a way of mapping but also a safety mechanism; when Dylan has paced a border, or marked a route, he seems to feel less anxious about inhabiting the space. I think this is partly about his location in relation to others but is also about his embodied self; he needs to know where he is in relation to himself as much as to the outside world.

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Dylan with his book

As well as visiting Chester Cathedral we visited St John the Baptist’s Church, Chester’s¬† original Cathedral.¬† There was a second hand book sale in the church and Dylan went rummaging, returning with a Thomas the Tank Engine book (no surprise) and a coffee table book (which was unusual). ‘What is that you’ve got, Dylan?’ I asked, pointing to the large book under his arm as I helped him find his purse.¬† ‘York’ he replied.¬† The book was called ‘Colourful Britain’ and had photographs of various iconic locations in Britain. The reason Dylan wanted the book was the photo of York Minster on the cover.

Was Dylan making an explicit link between the town we were visiting and his beloved York? Could his experience of somewhere strange be helping him re-think the familiar? As I wondered this I recalled how, at Dylan’s age, I had spent a year in the USA as part of an exchange programme. As Christmas approached one of my English peers felt so homesick she decided she would go home for Intercession. I hadn’t settled either but I didn’t want to spend money on a round trip flight to England; I decided to go travelling in Mexico instead.

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Magnolia, Chester Cathedral Garden

Those weeks turned out to be some of the most difficult of my life; I got into scrapes I shiver to recall 35 years on. But one of the positive things that came out of the experience was that when I made it back to the University of Massachusetts it felt different. I remember how relieved I was to see the vast campus (which before Christmas had seemed so alien) and hear the American accents telling me they would see me later (which had seemed unintelligible before but was now reassuringly familiar).¬† It was wonderful to be back, I told my friend Nettie: it was as if I’d come home.¬†

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Water of Life (Garth, 1992)

Before we set off to drive back over the Pennines on Saturday evening I showed Dylan his programme for the next day and week ahead. The plan was that I would return Dylan to his residential setting ¬†but I wasn’t sure whether Dylan would accept this; usually I see him Saturday/Sunday at home rather than Friday/Saturday away from home.¬† I pointed at the symbols and photographs and tried to explain, reassuring Dylan that he would see me as usual the following weekend.¬† I fell silent, wondering if he had understood. Dylan looked¬† at his programme and pointed to the photo of our house:¬† ‘Home’, he said to me.

This is the first time Dylan has said ‘home’ unprompted. I have never been sure whether or not he understands the word or knows where home is – and since Dylan moved to residential care I have become even more confused about this. Should I call his care home ‘home’, I have asked myself, ¬†or the house where we used to live together and which he now only visits? ¬†I have kept fudging this, never quite sure what to say. But Dylan seems to have it figured out. Perhaps moving to residential care has given Dylan a stronger sense of home in the same way that I came to appreciate the familiar through the strange at his age?

‘Yes Dylan’, I replied: ‘That is our home’.

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.

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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.

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

A Tough Nut To Crack: reflections on control

This week I decided to re-read Louis MacNeice’s Autumn Journal . When I went to look for my copy of MacNeice’s collected poems, however, it was missing. I once heard a psychotherapist compare the feelings we experience on losing a book with the realisation that we no longer love someone. Later, I turned this into a poem.

How It Happens

autumn journalLike you might lose a book from your shelves –
not noticing for a while (three years perhaps)
until one day you look for it.
Confident at first, you become uncertain,
discomfited. Later – frantic, obsessed –
you climb on high stools to reach
impossible shelves.
There might be questions asked.
Not just what you did with it
but when you had it last –
whether you were careless,
mislaid it perhaps.
Or did you give it away?

You might want to accept it.
Not be sure anymore,
what you liked about it or why
it was important to you once.
But something must have made you look.
A passing reference on the radio,
that small detail in an obit in The Times.
Or were you reminded by eyes or chance face
passing by? Did you hear words spoken
by another mouth – like seeing a copy
of your book on someone else’s shelf?
When you realise it’s gone can you find it again?
Get it back? I don’t know how. It happens (perhaps).

Afterwards I took to filing my books alphabetically. They’re not the only thing in my life in order now: my music is arranged Armatrading to ZZ Top; drafts of poems are kept chronologically; documents are filed by theme. My life wasn’t always like this however; as a student I lived in typical disorganisation. I remember being torn off a strip by my supervisor, in the run-up to submission of my doctorate, for not having kept my research records in better order.

*

books 001My use of alphabetical systems to order the environment is partly about supporting Dylan. Dylan doesn’t know the alphabet but he can memorise objects visually. He needs books and music to stay in the same place, however, if he is to locate what he wants. As I don’t have the ability to memorise the position of things on shelves, the only way I have of keeping books and music in the same order is to use the alphabet. Although Dylan doesn’t read my books he is interested in their covers and has favourites; my Blake books and collected James Wright, for example, are particularly loved (Dylan likes men with beards and there is a splendid photo of Wright on the back cover of Above The River). Dylan organises his books by a system other than the alphabet but he has memorised the position of each one and it is important that I don’t disrupt this by moving them.

books 002This organisation of the environment goes further than books and music however. As far as Dylan is concerned, everything in the house has its place. His view of how things should be is inch-perfect; if I stand up from a chair and push it aside then walk away, Dylan will re-position it exactly as it should be. His systems apply to all sorts of objects: a video case left open on a particular item of furniture overnight; a DVD case placed behind a sofa cushion; a hair brush on a specific shelf; some papers in my writing room which must not be left out on my desk. Dylan’s sorting is a major part of his autism. Although some of his habits are fixed his organisation of the environment continues to evolve. At the moment, for example, he sorts holiday and steam train leaflets using a system based on whether or not we have visited and how much he would like to (a sort of queue system). His methods are becoming increasingly sophisticated; if I can’t find something I assume that Dylan has found a new place for it.

books 004Parents and carers often make adjustments to the way an environment is organised in order to make it more comfortable for an autistic child or adult. Although Dylan likes being out and about, the community is stressful for him; coming home to an environment which is predictable helps him to relax and feel safe. While initially this required a conscious effort on my part, I have been making adaptations to the home for so many years now it has become second nature to me. In a previous post I noted that we tend to take on the characteristics of people we live with and observed that there’s no reason why this should be any different for those of us who live with people who are neurologically atypical. I would certainly admit to having ‘gone native’: I control the environment for my benefit now as much as for Dylan.

*

‘Control’ is one of those concepts that can be used both positively and negatively: children shouldn’t be out of control but being controlling is frowned upon; we don’t want to lose emotional control but stiff upper lips are unhealthy. It is also a subjective concept – how much control people consider too much varies. Control is, however, used as the basis for judgement; complaints about people being ‘controlling’ are frequently made in the workplace and home. Criticism is also often made of environments which are controlled; I find it puzzling that it is considered OK to comment on someone’s house being tidy, but not on one being messy. A boyfriend who teased my alphabetical shelves rankled so much I put him in a bluesy poem:

My lover mocks the way I file a book;
the order against chaos that I keep.

For me, writing a poem is a process of discovery as well as a technical challenge; I don’t think I realised until I wrote those lines that my keeping order was a way of keeping at bay the forces of disorder. But I realised, afterwards, that this is partly what I am doing; a controlled environment is one in which we reduce risk, be it debris from an explosion or rogue measurements from complex variables.

*

Dylan has been assessed at home recently by potential providers of residential care. After one care home manager had completed her assessment we were chatting about transition from child to adult services. She had recently visited a children’s respite provision, she told me, and had been dismayed by how controlling the environment was. The adult provision she was responsible for, she said, supported young people to have control over their own lives. I had no reason to argue with that. But then: ‘I sometimes think’, she said, ‘ that if parents were less controlling fewer adults would end up in residential care’.

I felt as if I were the centre of a controlled explosion. I was speechless. Did she think a residential place a failure then, second best to continuing to live in the parental home? Was she criticising my parenting? Had she clocked my alphabetical bookshelves perhaps? Afterwards I reflected that none of these were likely to be the case: she wouldn’t have shared them with me if they were and, besides, I liked her. I decided that she wasn’t talking about controlled environments so much as controlling relationships. I let myself off the hook: I wouldn’t berate myself for having a tidy house. Parents of autistic children don’t need any more sticks to beat themselves with; we already have plenty. Alcohol in the first trimester. A poor diet. High stress levels. A prolonged labour. That vaccine shot. I didn’t plan to add ‘controlling mother’ to the list. And besides – isn’t that just another version of ‘refrigerator mother’?

*

Berger and Conrad youtubeThe film Ordinary People (which I’ve referred to elsewhere) is a study of the impact of loss on a family. Buck, a much-loved oldest son, dies in a boating accident which his younger brother, Conrad, survives. The movie opens in the aftermath of a failed suicide attempt by Conrad who is struggling with survivor guilt and Post Traumatic Shock Disorder. Conrad agrees to see a therapist, Dr Berger, but at an initial meeting is reluctant to engage.

Why are you here then? What do you want from me?

I don’t know. I guess I’d like to be more in control.

Why do you want to be more in control?

I don’t know. So that people can quit worrying about me.

Well let me tell you something: I’m not big on control.

ordinary dinner   youtubeWhen Conrad balks at Berger’s suggestion that he will need to attend for therapy twice a week Berger shrugs: Control’s a tough nut to crack. Control, it turns out, is a key theme of the movie; as the focus shifts to the impact of Buck’s death on the wider family, we realise that this is the way Conrad’s mother, Beth, copes with her grief. Beth manages the environment and those around her obsessively: she lines up cutlery, makes lists and runs a perfectly-ordered house. She controls schedules, organises family trips and manages the behaviour of Conrad and her husband, Calvin. On the morning of Buck’s funeral, it transpires, Beth had asked Calvin to change his shoes and shirt. Conrad tells Berger that his mother had never forgiven him for getting blood all over the new bathroom tiles when he tried to kill himself. Berger knows that what Conrad actually needs is not to feel more in control but to feel; Berger helps Conrad but Beth’s refusal to let go ultimately causes her to lose everything.

I’ve watched the film dozens of time but never fail to be moved by the mother’s situation; grieving deeply for her dead son, the only way she can cope with life is to erect defences against further loss. Haven’t I had enough surprises? she yells at Calvin when he tries to persuade her to see Dr Berger for family therapy; her response to grief is to want life to be a settled, private place. Beth’s determination that nothing should ever again disturb her world means she appears cold and detached emotionally: if she is not incapable of loving Conrad and Calvin, then she is unable to show it. In a previous post I have reflected that this is an understandable response to trauma; while keeping an ordered and controlled environment is helpful for Dylan, there is probably a sense in which it helps me too.

*

whatculture.com conrad and bethAlthough Conrad tells Berger that his mother hates him, his father sheds a different light on the relationship between mother and son; the problem, Calvin suggests to Berger, is that Conrad and his mother are alike. I have been thinking, recently, about the ways in which people are similar, not different. Spectrum, a manuscript of poems I’m working on currently, considers autism as an integral part of a family. Instead of focusing on the things which mark Dylan out as different, the poems in the manuscript find connections between his autistic world and the neurotypical world around him. Rather than dwelling on paradox, these poems look for pattern. In the title poem, I reflect on possible links between three generations of family; here I show my father and I attempting to impose some control on our respective environments, as Dylan does on his.

Spectrum

He calls me on Sunday morning at 8.
There are 72 out, he says: 3 more
to come by the end of the day.
Dad has been counting daffodils.
I picture him in the garden
stooping over them, moving stems
between his hands in groups of 6.
My son is getting anxious;
he is clutching his second DVD of the day,
needing help. This call should only take
5 minutes, I tell myself, if I just say Yes.
My guess is perfect for once. I correct
the angle of a vase on the table
as I pass: fast rewind, select play, press.

Mathematics is something which I think of as linking myself and Dylan as it is associated both with autism and poetry. The film Ordinary People shows us that control can be functional in helping us to overcome trauma and deal with situations we find threatening; I use numbers in my poem to express this positive side of exercising control. The film also, however, illustrates the dangers inherent in such control and I try to hint at these in the poem. It may be that Dylan’s current behaviour (which you can read about here, here and here) is related to control; perhaps he is testing out boundaries or struggling to manage new feelings. If emotional control can be both enabling and disabling, then my task is perhaps to provide Dylan with the freedom to explore his emotions in a place which, while not risk-free, is stable and safe.

Endnote:

I’m still wondering what happened to my copy of Louis MacNeice’s Collected Poems but my money’s on the boyfriend who mocked my alphabetical shelves ūüôā

*

References:

  • Elizabeth Barrett (2013) ‘Spectrum’ in Turbulence, No. 13
  • Elizabeth Barrett (2005) ‘How It Happens’ in The Bat Detector. Wrecking Ball Press
  • Robert Redford (1988) Ordinary People [VHS]

Images:

All photographs by Liz except for the cover image of Louis MacNeice’s Autumn Journal (Faber and Faber) and the movie stills:

  • Dr Berger (Judd Hirsch) and Conrad (Timothy Hutton) is from Youtube.
  • Conrad, Calvin (Donald Sutherland) and Beth (Mary Tyler Moore) having dinner is from Youtube.
  • Conrad and Beth in the garden is from whatculture.com

Here’s a trailer for the movie:

School Holidays And Autism: juggling work and childcare

Earlier this week I was in my office, head down in papers, when I was struck by the silence. Where was everyone? It took a moment for me to realise that the schools had finished for summer and that colleagues with children were taking annual leave. Dylan left school just a year ago; how quickly, I thought to myself, I had lost the rhythms of the school year.

Dylan leaves school 013Last week I listened to an academic on the radio arguing that school holidays should be spread more evenly across the year because the free meals provided by schools are critical for some families; new research indicates that children from the poorest backgrounds may not get enough to eat during the long summer holiday. Educational arguments for adjusting school holidays have also been made; pupil regression, it is suggested, would be lessened if the summer break was shorter.

For autistic children, for whom routine and structure are key, the summer holiday can also be¬† challenging. Dylan was lucky enough to attend a National Autistic Society school where the calendar had been designed to take this into account; holidays were spread across the year so that pupils did not have a long break from school. So while the vast majority of schools in England are already closed for the summer, this time last year Dylan’s final school year had not yet ended.

*

summer schedules 009It doesn’t surprise me that an adjustment to the school year for autistic children could benefit¬† children more generally; it is often noted that good practice for pupils with Special Educational Needs is good practice for all. As Dylan’s school was unique in its approach, however, his alternative calendar was not without problems; having children whose school holidays were different presented challenges when taking vacations, for example, and there were significant¬† implications for me as a working mother.

If you are a parent of a disabled child school holidays can be difficult, especially if you are single. Working in the education sector I am fortunate to be able to take leave during the summer. School holidays at other times of year, however, were always problematic for me; half term break can be tricky for any working parent but a two week half term holiday (to allow for Dylan’s shorter summer) was a nightmare. In the silence of the office this week I remembered how difficult it had been to manage school holidays; for all the difficulties I had encountered since Dylan left school, I was glad that I no longer faced that particular challenge.

*

Brittany 13 084Part of the challenge for working parents of disabled children is the lack of childcare. Apart from attending a play scheme organised by a parent support group, Dylan was looked after in the home by my mother or a childminder during holidays. There were no camps, social organisations or summer activities which Dylan could attend. My experience may not be atypical; a 2013 survey of summer holiday childcare for disabled children (reported in Waving Not Drowning, a newsletter for carers and parents of disabled children who work or wish to work) found that most parents used care provided by a friend or family member. At the start of the summer holidays many families reported that they had yet to find care or had only tentative arrangements for the summer:

What resonates from the responses is how piecemeal, precarious, expensive and stressful cobbling together the summer provision is for many parents of disabled children. (Waving not Drowning, Autumn 2013)

The survey reported cases of parents having to leave their jobs because of summer care difficulties as well as changing hours, taking unpaid leave and working from home. There were also reports of family and mental health breakdown as a result of the stress of trying to arrange summer childcare. The Waving not Drowning report concludes:

Clearly lots of difficult, individual compromises are being made to survive the challenging summer holiday period and at considerable expense.

Brittany 13 086The WND survey of summer childcare focuses on the needs of the parents of disabled children. Appropriate child care is not only in the interests of parents, however; the home is not an easy environment for children who require specialist provision. I don’t have rebus symbols and timetables displayed around the house (though there are some). I haven’t got a ball pool, snoezelen, playground or even a garden. The home has flashpoints and hazards. Spending three or four weeks in this environment during the summer is not ideal for Dylan.

In the absence of appropriate holiday provision, however, parents of autistic children and young adults do the best they can to manage the summer holidays. When my children were small I would plan a diet of summer activities, balancing days aimed at my daughter’s interests with days based on Dylan’s needs. This was challenging but it was key to managing the school holidays. When my daughter outgrew my summer schedules I went on designing them for Dylan. Because Dylan’s interests are, for the most part, the same now as when he and my daughter were young, I have spent nearly 20 years doing the sorts of things parents usually get to do only briefly; my summers are still full of zoos, adventure playgrounds, museums, parks and sandcastles.

My summer schedules always included a mix of the tried and tested and the new. Trips that proved particularly popular made a repeat appearance the following year. Sometimes there was a theme; in 2011 for example the focus was ‘caves’ (I’d noticed Dylan was attracted by the darkness and acoustics). That summer the schedule included Cresswell Crags, Castleton and a visit to a lead mine.

Such schedules helped Dylan to manage a period of time which he would otherwise have found challenging. As well as benefitting Dylan, however, they supported me; I could get up in the morning, check the schedule and get on with the day. I found this helpful; no matter how difficult the previous day may have been, the schedule kept me focused. This is important given that, living with autism, there will always be days which challenge. It is easy in the aftermath of a difficult experience to stay home rather than access the community. However, when falling off a bicycle you have to get back on and a summer schedule enabled me to do this; it was a scaffold for Dylan and a safety net for me.

Summer 2013

Summer 2013

A schedule can only ever be aspirational however: in the last three summers there were days which didn’t happen. Some of the aborted activities were pulled through to the following year (and sometimes still didn’t happen). I’m the sort of person who makes lists but I know that sometimes I have to be flexible and let them go; a summer schedule must never become a tyrant.

This year I am working hard at letting go. If you’ve been following this blog you’ll know that Dylan has been unsettled recently. Everyone involved in his care is trying to work out what is triggering Dylan’s behaviour but as yet we have not been able to fathom it. As Dylan is no longer at school there is no need for a summer schedule this year (his day centre is open all year). Because he has been so unsettled, however, I thought it might help to do some of the things we have done in the past. I therefore drew up a plan for Dylan which included some time at his day centre, some time with me and a summer holiday. Dylan’s social worker expressed concern about my plans to support Dylan alone and to travel to France but I was optimistic; I will get Dylan on a summer schedule, I thought to myself; that will settle him.

Summer 2014

Summer 2014

This week, however, I have accepted that it isn’t wise to travel this summer and have cancelled our holiday; how short-lived my joy at last year’s trip to France turned out to be (you can read about that here). I should only ever make plans I am prepared to break, I tell myself. So I have redrafted the summer schedule to include some less ambitious days at the seaside; there will, hopefully, be other holidays in France. Who knows, though, what the future holds: these recent events remind me to live each opportunity as if it is the last (though on a schedule, naturally).

Happy summer!

Seagull in St Malo

 

Reference:

Waving Not Drowning: Newsletter (Issue 37, Autumn 2013)

All images taken by Liz (the seaside photographs taken while on holiday in Brittany, August 2013).

 

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.

~

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, 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.

~

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.

~

DSCF1007

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.

~

20130714_164902

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 where he had relatives. One day I suggested we visit Dachau.

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.

~

The Cricketers

I didn’t understand at the time why Hans ‘slipped up’ (as he put it) that day. Later, though, I realised that in the face of horror he had needed to anaesthetise himself. The incident 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.

~

DSCF1435

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.

~

The Moon, Stoney Middleton

The Moon, Stoney Middleton

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 ūüôā

Reference:

‘Der Mass Weizen’ was published in my first book, Walking On Tiptoe (Staple, 1998) and also included in the re-issued version of that book Walking on Tiptoe and Other Poems (Bluechrome, 2007).

A Weekend With Lions: autism and risk

Dylan, like many autistic people, likes his routines; he seems to find the pattern of attendance at his day centre reassuring and to enjoy the rhythm of his regular activities. It’s not just the autistic person who can feel comfortable with routine though – parents and carers can also fall back on tried and tested activities rather than risk something new.

My trips out with Dylan habitually involve a back-up plan in case Dylan becomes distressed or a situation becomes unsafe. In some ways this is not dissimilar from the process we might go through when supervising an activity with any young person. With Dylan, however, I have to also consider when to abandon a trip or ask for help. As a single parent I am conscious of the extra challenge this presents. I don’t have family I could call on and I would not expect friends to be on hand if I found myself in a situation where I needed support. The implications of this are that I either trust that in such a situation there will always be a generous member of the public around or I don’t put myself and Dylan in a situation where we need help. For some parents of autistic children, then, routines appear attractive in that they can reduce such risk.

 The Calculated Risk

dscf1140This isn’t good enough though is it? Apart from the fact risk can never be entirely eliminated it is not healthy to live life so fearfully. I have made passing reference to the impact of fear on my caring for Dylan elsewhere (see, for example, this post). While I realise that such feelings are motivated by wanting to keep Dylan safe, I am aware that this is not something I can allow to get the better of me.¬† Curiosity and novelty are as much a part of learning for autistic people as for non-autistic people; if I want Dylan to reach his potential then I need to develop the confidence to support him into new situations so that he can discover things¬† about himself and the world.

Happily, something comes along every so often which offers just the right degree of novelty.¬† In summer 2011, for example, I took Dylan on a steam train trip from our home city to the coast. Although to some people this may not seem like much of a risk it required me to think through contingencies.¬† How would Dylan cope with a 12 hour trip away from home without a car (many families living with autism depend heavily on private vehicles to manage outings)? Would the noise of the engine bother him? What if Dylan didn’t like our seats or the carriage was over-crowded? How could I help him to understand that we were only getting off the train at our destination station for a short while? What if Dylan wouldn’t get back on? And (crucially!) how would I go to the toilet on the train given that Dylan can’t be left unsupervised?

DSCF1137On the day of the trip we happened to be seated at a table with a couple who, although they didn’t use the term autism in connection with their grown-up son, had an understanding of Dylan which I usually only observe in other parents of autistic children.¬† The trip was a success and passed pleasantly both directions with our carriage companions intuitively understanding Dylan¬† and even supporting him while I nipped to the loo and to buy refreshments. At some point our companions enquired if Dylan was interested in zoos.¬† Their son, apparently, had developed a passion for them which had taken him all over the world. This would later transform my small risk of a steam train into the scary prospect of lions.

Lions and Tigers

Chester Zoo 2011

Chester Zoo 2011

After the trip I thought about the couple with the zoological son and decided to try an outing to a zoo (Dylan had been on family visits as a toddler but not since). I did quite a lot of preparation in advance of our first visit but with the wrong animal. My prediction had been that Dylan would like monkeys so on the run up to our first trip (to Chester Zoo) I spent a lot of time talking about them with him, waving my arms around and hooting, and borrowing monkey-themed resources from the library.¬† As it happened, Dylan wasn’t overly bothered about the monkeys. The lions however – well that was another matter. Our entire day at Chester ¬†Zoo – and every zoo we have visited since – involved us circling the big cats.

Private Zoo, Kent 2012

Private Zoo, Kent 2012

A marvellous thing about zoos is that once you’re inside they are traffic free and safe. I’ve discovered that I can reduce the level of supervision I would normally give to Dylan so I tend to ignore the map and leave the route to Dylan to negotiate; always, and almost uncannily, he leads me to the lions. Zoos have became a passionate interest for Dylan and we have spent the last few years systematically visiting them in the way the couple on the train probably did with their son when he was younger. This has been fantastic for Dylan; it has supported his language development and his interests. As well as leaving flyers of trains on my desk for me to find, he now periodically leaves me the hint of a lion picture.¬† Holiday destinations in the last few years have been carefully selected to be within reach of a) a tandem cycle hire b) a steam railway and c) a zoo.

Edinburgh Zoo, March 2012

Edinburgh Zoo, March 2012

I realise this is beginning to sound more like routine than risk – and it’s true that with Dylan things that begin risky quickly become routines if they prove popular. But the way in which the lions posed an additional risk was that in due course we had visited all the zoos which I considered to be possible. This included Edinburgh Zoo which, although in a capital city in another country, had somehow seemed manageable. What we were left with, if we were going to continue, were far more challenging locations. Our tour of zoos, which had started from a chance encounter during the comfortable risk of a steam train, had led us to London.

 The Capital Risk

Edinburgh Zoo

Edinburgh Zoo

Did I fancy taking Dylan and Ella to London Zoo? Julie asked. I had met Julie at a poetry festival the previous year. She had an autistic daughter only slightly older than Dylan and so, through our shared interest in poetry and autism, we had kept in touch. Dylan and Ella had met a couple of times and while they didn’t pay much attention to each other there had been encouraging displays ¬†of tolerance. Ella had been to London several times previously but hadn’t been to a zoo before, so that would represent something new for her.¬† Dylan, by contrast, had been to lots of zoos and would be comfortable once he was inside London Zoo – for him it was negotiating the city which would be the challenge.

I lived in and around the capital in the 80s and 90s and am quite comfortable in London. While Dylan was still only a baby, however, I moved north; although we visited friends in London for a few years afterwards, after the autism diagnosis visits with Dylan stopped. There seemed to me to be no good reason to take Dylan there; he doesn’t like crowds, hates noise, isn’t interested in London’s cultural attractions and has no road or traffic sense.¬† In fact, Dylan likes the routine of home and to be out walking in unpopulated countryside. So while Dylan was growing up I made quick forays down to London alone while he was in respite.

Trafalgar Square

Trafalgar Square

My initial reaction to Julie’s question was that it was impossible; there was no way I had the confidence to manage Dylan in London by myself. However, Julie was encouraging, reassuring me that she and her partner would be there if I needed support with Dylan and that their experience with Ella was that it was fine, providing you calculated the risks. What this involved, they explained, was doing things which were familiar such as eating at favourite restaurants and using the buses. Getting around the city was one of my key concerns; I had visions of Dylan going into meltdown in the deepest underground station and refusing to get on a train or take an escalator back up to street level. Although I knew walking routes across the city, the hubbub of the crowds and traffic didn’t make this a good option for Dylan, so not using public transport, I predicted, could create a problem.

Sometimes I can talk myself into taking a medium-sized risk by flirting with an even bigger hazard.¬† Noticing an advert for an Autism Friendly production of The Lion King in the West End I was seduced by the idea of turning the proposed trip into a lion-themed weekend. Shall we take Ella and Dylan to see The Lion King while we’re there? I asked Julie.

Tunnel Vision

London Lions 048

London Zoo

So at Easter last year we travelled to London from our respective cities for the weekend.¬† I had no doubt that Dylan would enjoy the zoo and he did, indeed, appear to (though I suspect it wouldn’t make it into his top three zoos). What I was certain Dylan wouldn’t tolerate, however, was the theatre. Dylan had not been to the theatre before and ¬†I was sure that he wouldn’t accept the changes which a live production would involve to a story he already knew; he has been watching the Lion King DVD every week for years and I was quite prepared for Dylan to be furious at any deviation from the film version.¬† I was, however, prepared to risk trying Dylan at the theatre given that it was an Autism Friendly production and I would have the support of Richard and Julie. These two factors – an inclusive production and the encouragement of friends – were absolutely key to me taking the risk

Dylan and Ella outside the Lyceum 2013

Dylan and Ella
outside the Lyceum

It was more than worth it.¬† Dylan, against all my predictions, stayed for the full show. It was a wonderful production (it had never occurred to me that I might enjoy it) and Dylan certainly seemed interested; it might not have been the same as his DVD, but he recognised characters and songs and paid attention to unfamiliar aspects of the show. Because The Lyceum’s production of The Lion King was the first inclusive theatre production we had attended I didn’t realise that it was the Gold Standard.¬† However, having recently taken Dylan to another theatre production,¬† I would describe The Lion King as exemplary¬† Autism Friendly provision. I’m glad that this was the case as it meant that Dylan’s first experience was a positive one, something which has been very enabling (I will reflect on the growth in inclusive cultural events in a later post).

The success of the theatre visit astonished me. Equally astonishing, though, was Dylan’s reaction to London itself. It turned out that he loved the crowds and traffic. He walked the streets of London like a native, leading me with delight to shops and caf√©s. Dylan quickly learned the route back to our hotel and settled himself as if at home. Most striking of all was his quick interest in riding the underground. All my pre-visit fears were unfounded; Dylan adored the Tube trains so much that every time we walked by the mouth of an underground station he tried to pull me in.

Once I had got over my surprise I understood why this might be. Dylan has always had a fascination for tunnels, something which I think stems from a scene in Thomas the Tank Engine where Henry won’t come out of the tunnel in case he gets his paint wet. On regular trains I had noticed that Dylan makes a particular hand signal whenever the train passes through a tunnel;¬† turning them palm up, Dylan cups his hands gently until we emerge into the light. If I’d have thought a little more about Dylan’s love of tunnels, I might have realised that the capital would be a huge hit with him. Imagine it: one great network of tunnels under the city with entry points wherever you walk and escalators waiting to take you up and down. It must have seemed like a giant fun fair.

Wizards and Lions

lion yellow brickIn the Wizard of Oz it is Lion who sets off down the Yellow Brick Road in search of the Emerald City to ask the wizard for some courage.¬† I think that out of that quartet of friends – Dorothy, Tin Man, Scarecrow and Lion – I am most like Lion. When¬† I watch the Judy Garland version of the film now I am struck by the fact that the actors who play the farm hands on Aunt Em’s Kansas farm are the same actors who play the characters in search of what they lack. I don’t think I noticed this as a child. Now I enjoy the way that it reinforces the idea that we actually already have the things we think we are most in need of; that our intelligence, love and courage are not qualities that exist somewhere outside of us, but are right here in our own backyard.

lion courageActing with courage to raise a child or support an adult with autism is something that we can all do if we believe that we can; lion had courage all along, he was just sometimes a little afraid of himself. What he did need in order to realise that the courage was within him, though, was friends to help him along the way. Parents and carers of children with autism sometimes need people to support them as they¬† learn to take new risks. I have done a number of things with Dylan in the last year (including driving alone with him to France which you can read about here) which I doubt I would have contemplated without the weekend in London. ¬†I’d therefore like to dedicate this post to the Corbetts for their encouragement and friendship that weekend and since.

London Lions 090

You can catch up with Ella’s travels here:¬†www.facebook.com/pages/Ellas-Travels/383690745077645