Shredding Pinocchio

WP_20150331_17_33_36_ProSo the other evening I heard the most terrific commotion from Dylan’s room; nothing unusual about that, I thought to myself as I took the stairs two at a time, except that something seemed different about this noise. But by the time I got to Dylan’s room it had stopped; he was sitting on his bed, absorbed by something. As I approached I couldn’t believe what I was seeing: Dylan was shredding his Pinocchio book.

What are you doing Dylan? I asked, alarmed. What are you doing to Pinocchio?!

But Dylan had disappeared into the zone where he is unreachable. I moved towards him wondering whether or not I should stop him from tearing the book but he pushed me firmly away. He was intent on ripping. I watched Dylan work carefully through the pages tearing each one into strips and throwing them in his waste bin. He was systematic and purposeful. The book had to be shredded.

more dylan's 21 053Tearing pages creates sensory effects which can be soothing or stimulating if you are autistic. Although Dylan doesn’t usually shred, he appeared to have established a rhythmic pattern of tearing which he found calming. Still I was alarmed – not because of the shredding per se but because it was happening to Pinocchio.

Dylan has been in love with Pinocchio since he was a boy. Although he has collected various Pinocchionaelia over the years, his focus has settled on this particular book. I have described the book, in a previous post, as a sort of witness or friend. The book goes everywhere with Dylan; it waits behind him on the piano while he has his meals and it sits on the laundry basket in the bathroom, open at a favourite page, while Dylan takes a bath. It is carefully positioned on his bed while Dylan is in his bedroom and is carried in his backpack wherever he goes. Dylan even manages to hold it when he goes climbing.

independence 016Why then would Dylan shred it? His relationship with the book had seemed as usual less than an hour before when Dylan had it with him during his evening meal. Had something happened to the book to ‘spoil’ it perhaps? Could Dylan be upset because he had accidentally torn or spilled something on one of the pages or it had become creased or in some way damaged? If Dylan had learned to love the book so much maybe an alteration to it, however slight, would be disappointing and frustrating for him? This was the only explanation I could come up with, anyway, for Pinocchio being so suddenly, and so thoroughly, rejected.

To try and understand how Dylan might be feeling I searched for a parallel in my own life. Was there something important to me which I could feel let down by? I could think of plenty of objects which have sentimental value or which I care about and wouldn’t want to damage. I keep these in relative safety, however, rather than carrying them with me. If I restricted myself to thinking about things which are portable the only object I could come up with was a mobile phone. Perhaps it would help me empathise with Dylan if I imagined the frustration of not being able to get a signal? Might I be tempted to bin or smash my phone? I’m actually not very interested in mobile phones so maybe not. Still, this was the closest I could get to imagining how it might feel if something I depended upon let me down.

WP_20150331_17_33_44_ProMy concern at the shredding of Pinocchio reminded me of how I would panic if we didn’t have a spare dummy in the house when Dylan was a baby. I’d been dead set against using dummies (or pacifiers) before my children were born but Dylan turned out to be a sucky baby who wouldn’t settle without one. So for years we lived in the shadow of Dylan’s dummies – just as now I was living on the end of Pinocchio’s strings.

Although Dylan has an interest in collecting duplicates  this edition of Pinocchio was a one-off; he has two copies of another version but there were no spare copies of this favoured edition. As Dylan shutteres 012turned and tore the pages, however, he appeared calm. I considered the possibility that I might be more anxious about this than Dylan. I remembered a woman I used to live with who would sometimes take a pot from the kitchen cupboard and hurl it across the backyard on her arrival home from work. She was a teacher at a London secondary school and smashing crockery helped her to release stress. Though the behaviour made me anxious it calmed her; afterwards she would put the kettle on for tea as if nothing had happened. Perhaps in a similar way shredding was helping Dylan to feel better.

This helped me understand why Dylan might feel compelled to tear his book but I was concerned that the benefits would be only temporary. For while my housemate smashed pots she didn’t like anyway, Dylan loved Pinocchio. What would he do without his book by his bed through the night? How would he eat his breakfast without Pinocchio? Or be comforted by the weight of his backpack if Pinocchio wasn’t in it? What was going to happen to us without Pinocchio?

*

WP_20150418_19_43_59_Pro-1The dummy-sucking years had made me anxious. One day a friend advised: loosen up a little Liz – he’ll stop using it when he’s ready – when did you last see an adult with a dummy? Perhaps it was my more relaxed attitude as a result of this advice which helped Dylan to give up his dummy soon after. He did this with the same determination that he had kept it for so long; one day he simply spat it out and never bothered with one again.

I would have done well to remember this instead of messing around online trying to source a replacement copy of his preferred version of Pinocchio. That night, Dylan took himself quietly to bed and the next day simply carried on with his life. It’s true he replaced the shredded Pinocchio with one of the alternatives but I saw this as positive change and development, like a hermit crab discarding a too-tight shell for one in which there is still space to grow. The thought of Dylan the hermit crab brought to mind one of my early poems, ‘The Littoral Zone’. The piece opens:


This is the littoral zone, you say, as we scavenge below strandline,

picking out shells and weeds for the children.
You lift a Dog whelk, turn it in long-fingered hands,
place it gently on your palm. Hermit Crab, you whisper,
as the barnacled shell rolls over, sprouts a pincer.
Gull-eyed, you pluck a tiny periwinkle from the sandy flats,
show me a speck of crab curled inside,
explaining it will leave this for a bigger shell in time.
This recluse, this little anchorite, is in the first shell of its life:
strung out ahead of it, across this beach, a future of univalves.

I like that, I tell you:
the thought of wearing a right-sized shell
with room enough to grow; getting the fit right –
feeling snug (but not too much).
And I realise, as I say this, that I’ve been crawling backwards,
reversing across the littoral zone –
cramping into ever smaller shells.

…/

The poem goes on to describe the discomfort of this process and the way in which it can involve a loss of self and  ‘voice’. It ends more optimistically, however, with the speaker resolving: ‘I fill my lungs, cry with the gulls’. As I re-read my poem I enjoyed the link I could find, years later, with Dylan’s pattern of growth and development. It also occurred to me, however, that a couple of shifts of direction I’d made recently could be considered as ‘reversing across the littoral zone’.

Pinocchio 003Last month, for example, I resigned my management role at work. Given most people seek promotion rather than demotion this is clearly not the expected direction of travel, professionally or materially. I prefer, however, to think of it as seeking a larger not a smaller shell; my reasons were driven by a desire to make space in my life for the things which matter more, not least my children. The amazing thing, I said to a friend, is not that I quit but that I managed it for so long.

Stepping back at work has had some immediate unexpected benefits. Within a couple of weeks I had drafted a couple of new poems (even with the ‘plenty else’ going on in my life for which reason I had resigned my role). They weren’t particularly successful drafts but I had, at least, made space for them. The other day I picked up the manuscript of poems which has been languishing on my desk: perhaps I would get around to sending this to a publisher now too?

After reading through it, though, I decided not to bother. There’s nothing terribly wrong with it. The poems are OK. Most have already been published in magazines. But really, I thought to myself – does the world need another book of love poems? Probably not. And I kept finding faults with the poems. I’m tired of conceits. Unimpressed by sestinas. Fed up with words like ‘heft’. So I did something I have never, in all my years of writing, done: I scrapped the lot (well, six poems got a reprieve). Time to move on.

I like the idea that starting over with my poems and giving up my management role are not very different to Dylan shredding Pinocchio; we sort of liked them, but they didn’t really satisfy us anymore. Something else will turn up, I tell myself, if we stay brave and open-hearted.

Reference:

Barrett, E. (1998) ‘The Littoral Zone’ in Walking on Tiptoe. Staple First Editions.

For information about my work as a poet please see the pages ‘Liz‘ and ‘The Poems‘.

Staying Alive: autism and risk

risky flight 003In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

risky flight 009Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult'; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

risky flight 005These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

risky flight 008So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.


Images:

The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.

Celebrating Dylan: afternoon tea, music and dancing

21st cake 002Although I accepted long ago that Dylan doesn’t like parties I decided to throw one for his 21st birthday. Why? I suppose because it is considered a year to celebrate. I can succumb to such suggestion: I don’t like parties either but I marked my 50th when the time came.

As well as 21 being a special number, the time seemed apposite. As I reflected in my last post, the search for somewhere for Dylan to live appears to be reaching an end. If all goes to plan I would expect Dylan to be embarking on the next stage of his life fairly soon. While the proposals are still on the drawing board, and subject to Dylan’s approval, it does seem that we have reached a crossroads. Dylan’s 21st birthday therefore seemed a good opportunity to take stock and look back in celebration at his life so far. [postscript: as I was about to publish this I received devastating news about Dylan’s placement about which more in a future post]

Earth, Sky and Stone

Once I’d decided to hold an event I was faced with the questions what and where. Dylan hodsock 027had enjoyed a friend’s ‘at home’ party recently but this wouldn’t work for Dylan who retreats to his bedroom if we have visitors. A Disney movie at Dylan’s favourite cinema would go down a treat with Dylan but wouldn’t be anything out of the ordinary or to everyone’s taste. An ice-skating party would also delight Dylan but would exclude others – and although pleasing Dylan and his peers was important, most of the guests would be adults who had supported us over the years.

In the end I settled on a tea party with music and dancing at the Yorkshire Sculpture Park. The park is one of Dylan’s favourite places and somewhere he has visited since he was a baby in a backpack. The combination of earth, sky and stone is magical and has brought us peaceful healing at times of grief as well as much joy. Happily, a room in the visitor centre appeared perfect for Dylan’s party: clear boundaries, white walls, natural light, good acoustics, and a lobby and annex for timeouts.

Anxieties and Absences

While the room and venue seemed ideal I was concerned that Dylan already associated the park with a particular routine; a trip there involves a two hour hike around the perimeter before a switchback past the lake and refreshments at the visitor centre. Would Dylan accept a visit for a different purpose? There was a possibility, I reflected, that he might not get to his party on the day.

WP_20150308_15_32_32_ProTaking Dylan to see the room reassured me he would walk down a corridor we didn’t usually use and allowed me to photograph him for a social story. Another way I tried to prepare Dylan was to involve him in sending out invitations. While Dylan might not connect sticking stamps on envelopes with a party, the activity provided an opportunity for me to talk to him about the event. Dylan understands the words ‘birthday’, ‘balloon’, ‘cake’, ‘music’, ‘dancing’ and ‘presents’ so I repeated these while pointing to the invitation and naming his guests.

How Dylan would cope with the guest list I had drawn up was another of my worries. I had envisaged the party as a celebration of Dylan’s life so it was important to me that I invited people who had supported him in the past. This meant that the guest list included care workers and PAs, childminders and neighbours as well as family friends and young people with autism. Some of the guests had provided support to me, rather than directly to Dylan, so he knew them less well. Others have a special role in our lives – two friends who are Dylan’s trustees for example. What would be the impact on Dylan of bringing together these various people from different contexts? And what sense would he make of absences? If someone who Dylan hadn’t seen since 2006 appeared, would he expect his Gran (who died that year) to walk through the door as well?

Support and Loss

Two people who would be out of context at the party were J and A, care workers at Dylan’s day centre. I would, I realised on the run up to the party, find it difficult to manage the event while supervising Dylan who requires 1:1 support at all WP_20150330_18_05_02_Protimes and 2:1 support in the community. As a single parent I cannot provide this so I continually run (sometimes erroneously calculated) risks; such hazarding at a party for 35 guests was not, I realised, a good idea.

Fortunately J and A, who know Dylan and have a good relationship with him, agreed to work the party. Having PA support for Dylan was an enormous help and freed me to spend time with Dylan’s guests. It also had an impact on how Dylan spent his time however; while untroubled by J and A being out of context, Dylan stuck very close to them. I wondered if this was Dylan’s way of managing an event which brought together multiple contexts; rather than move between them, he opted for the clarity of a familiar relationship. This definitely seemed to help Dylan to settle and as the party progressed he moved around the room more independently.

Although I was glad to have the PA support, it did mean a certain ‘loss’ of Dylan on the day (though I would have experienced other losses had I been supporting him myself). It was Dylan’s party though, not mine; the important thing was that he was happy. And everyone agreed that Dylan seemed to be having a magnificent time; by the end of it, he was up on stage, high kicking to the music.

Take Me To Church

imagesXD2UE9JJDylan chose the music for the party which included a Blues compilation, Hozier, Adele, Sam Smith and Florence and the Machine. Giving Dylan control of the music was a way of engaging him in the event and creating a sense of ownership. It was also important because Dylan uses music to ‘screen out’ sound, smells and touch which he finds uncomfortable. Playing familiar music, I hoped, would help Dylan to cope with sensory aspects of the party which he found disturbing.

I knew that chief among the environmental disturbance for Dylan would be us, his guests. Always ambivalent about human interaction, Dylan can range from seeking contact with others to pushing them away. Although I can’t always work out his reasons, some things I know. Dylan, for example, doesn’t like loud voices; shrill voices; excited voices; quick voices; tears; sudden movements; uninvited touch or eye contact. I know this because I am guilty of an awful lot of things on that list. Some people find it quite natural to adopt a manner which Dylan finds comfortable but I’m not one of them; I have to work hard at being the sort of person who Dylan can cope with.

dylan liz 1Because I know that I am many of the things which Dylan finds difficult I assume that I also have the potential to irritate and disturb other autistic people. And if an irritated autistic person goes into ‘meltdown’ then there can be a domino effect where other autistic people in the vicinity become distressed. I know that this is true of Dylan who becomes very anxious if one of his peers gets shouty or disturbed.

Dylan’s party contained ample scope for someone or something to trigger an autistic person to behaviour which could trip another autistic person to meltdown which would in turn feedback the trigger with added anxiety and accumulated distress to another young person. While there was a bit of this, I was struck far more by the impressive way in which Dylan and his guests managed themselves in the environment. It was partly the music, I think, which helped Dylan to ride out his anxiety at quick movements and noise. A couple of times, conscious that Dylan was getting anxious, I cranked the music and let Hozier’s voice melt the noise in the room: Take me to church…

Never Never Land

_WEA6744The music which helped Dylan to feel comfortable was, of course, just as likely to cause discomfort to someone else. But at his own party Dylan was allowed to make his own noise and quick movements :-) He was also permitted (for one day only) to eat three pieces of cake. I’m not sure I would have allowed this but it was one of the advantages for Dylan of being supported by PAs rather than low-sugar mummy. But perhaps I’m just envious; by the time I went to find myself a piece of his cake there was none left.

I’m not surprised that Dylan went back for more; the ‘number 2′ was his Never land sponge. A silhouette of a city skyline (to represent the Darlings’ London) was iced around the edge of the cake with Peter Pan standing on top and ‘never grow up’ inscribed down the 2’s curve. The ‘number 1′ , meanwhile, was a fruit cake with a seascape around the edge and Dylan’s beloved Ariel on top; this cake carried the inscription ‘a part of our world’. Creating a coherent design out of two characters was the source of such anxiety that in the end I opted for simplicity and hoped that the cakes would at least taste good.

SAMSUNG CAMERA PICTURESUnfortunately this strategy didn’t work so well for the buffet. Conscious of the need to cater for Dylan I asked for the afternoon tea menu to be simplified. Could we have some sandwiches without garnishes and condiments please? And could two of the sandwich options be on white bread? And could we perhaps have some vegetarian sausages, even though not traditionally part of afternoon tea? What I hadn’t anticipated, when I requested this autism-friendly food, was just how beige the whole thing would look. It can be hard to make plain food look appealing and nothing on the table tempted me (or, judging by the leftovers, others). I got home from the party feeling hungry.

The Presents

_WEA6733I had thought food might be an important way of helping Dylan to manage the event but on reflection I should have ordered it to please Dylan’s guests rather than to suit Dylan – particularly because, as it turned out, Dylan was far too busy opening presents to bother much with the buffet. For after refusing to open his presents all day, Dylan suddenly decided that he knew exactly what to do with them. It’s probably true to say that Dylan greeted his presents arriving rather than his guests; he tore off paper at high speed, leaving his PAs to juggle wrappings and gifts into separate bags (which they did brilliantly). I had little idea, afterwards, who had given what to Dylan.

_WEA6732I was sorry that I hadn’t taken the opportunity to thank people more carefully on the day; I had, after all, had the perfect opportunity while Dylan was pouring the wine. I’d asked Dylan’s PAs to support Dylan to go round the room with a bottle of bubbly, filling glasses for a toast. I was pretty sure this would engage Dylan as I’d watched him pouring wine for people at a friend’s party. I thought this might be a good way of encouraging Dylan to interact with his guests.

Although I’d thought that Dylan pouring the wine would give me a perfect opportunity to say a few words, I was too preoccupied with how the pouring was going to focus. Perhaps, on reflection, I should have helped Dylan with the wine as that would have helped me to interact as well :-) As far as I could tell, however, Dylan filled up glasses beautifully; the only thing that went awry was when, searching for an alternative to singing Happy Birthday (which Dylan doesn’t like), I proposed Three Cheers which one of Dylan’s guests didn’t like.

And the Past

_WEA6751But the greatest hit with Dylan was probably not the wine or music or the dancing or cake, or even the presents, but a slideshow of his life I had put together. From time to time I would see Dylan glance up at the wall where the images were projected and smile. I suppose, given the importance of the visual world to Dylan, it’s not a surprise that this would appeal.

SAMSUNG CAMERA PICTURESDylan’s guests also had reason to look up from time to time; a challenge I’d set myself, when putting the slideshow together, was to include photos of as many people at the party as possible. One such photograph was of Dylan at a friend’s 50th birthday party. Could I email a copy to him at some point? my friend’s husband asked; his mother-in-law (who had since died) was in the frame. His request reminded me that I had something of my mum with me; I had brought (thinking I might read it) a blessing for Dylan which she wrote before she died.

My very special grandson, Dylan. I have seen you grow from a tiny baby to the very grown up boy you are today. I am so proud of the way you have learned to live your life. You are so happy and my wish is that you can always be so…

Wherever there are gatherings there are absences. Sometimes, though, it is in the spaces that we find our celebrations. I enjoyed the party but my special moment was before people arrived, almost alone in the room with Dylan, dancing to Paper Moon. As we danced, a photo of my mum ghosted onto the wall: Look Dylan, I said, your Gran.

tears 001

Images:

I had in mind to make an album of the party for Dylan but for one reason and another didn’t take any photographs on the day. It is my biggest disappointment :-(  A big thank you to Bill, Bryony and Caroline for these. The photos of baby Dylan and his Gran and of big Dylan checking out the party venue are by me. The photograph of me and baby Dylan at YSP was taken by my ex-husband. The cake design and invitation are by me and my daughter. The Hozier album cover image is from Wikipedia.

Nae Narrative: Goldilocks and the handbrake turn

april-may 09 011It’s been a while since my last post. The fairly predictable rhythm of life with Dylan has been interrupted by the arrival home of my daughter. Last month she became unwell in France, where she had been living since September, and following emergency surgery had to return to the UK. Receiving a phone call to say your child is in hospital, especially when they are hundreds of miles away, must be one of a parent’s worst nightmares. It has been a stressful time but happily my daughter is recovering.

I think Dylan is pleased too although it is more complicated for him. Although he has someone else to play ‘one potato, two potato’ with, Dylan has had to give up his video den so sister can have her room back. There has been a lot of baking since my daughter returned which Dylan approves of, but he has had to share his ‘moo-ey’ and not be first priority all the time. There have been fewer steam train trips and less wild walking at weekends and Dylan has missed these. He seems to like his sister joining us for cinema trips though. And I think he enjoys listening to our conversation – though at times the language gets too much. One day in the car, unable to hear the CD for my daughter and I chatting, Dylan reached across and nipped her.

*
untitledThere’s an excellent interview with the Scottish writer Kathleen Jamie in the current issue of Poetry Review. I admire Jamie’s ability as an essayist as well as a poet and was particularly interested in her reflections on writing prose. Jamie does not think of her essays as ‘shrunken prose pieces’ but rather ‘extended poems’. Her essays, she says, come from the ‘poetry side’. The essay form, Jamie asserts, needs to be reclaimed from the academics to whom it was given over. For Jamie this involves downplaying the role of a ‘narrative arc':

…I had a sign above my desk for years that just said “Nae narrative”. Because that was the thing to avoid. The trick is to just let it rest on its images like a poem does. Every time I felt the urge to go, “And then this happened, oh, and then that happened”, I just pulled the stuff out. Got rid of that. And let the piece move image to image. Amazing how much you can just skip over between paragraphs. Like a stone being skimmed over a loch. And you can do a sort of handbrake turn in the middle of it.” (pp38-39)

The ‘poetry side’ of me recognises Jamie’s description of the process of writing. Not only is this how my poems get made, it is my preferred way of approaching prose. For it is when I approach a subject tangentially – through association, imagery and handbrake turns – that I feel the white heat of transformation. By this I mean the way I emerge from the experience of writing changed, knowing something about a subject or myself that I didn’t know previously, a process I think of as shaking the world into new shape in order to make the ordinary extraordinary and the extraordinary tangible.

*
I read the Jamie interview at a time when I was feeling a bit detached from my own poems and struggling to maintain my identity as a poet in the face of other demands on my time. At least I was managing to make regular blog posts, I told myself, although these had become prosaic blow-by-blow accounts of caring for Dylan. “And then this happened, oh, and then that happened” as Jamie would say. Perhaps I should just pull the stuff out, I reflected?

The thing is, in my caring role I am often in search of a narrative. Autism land is a bit of a mystery a good part of the time; in fact it can seem a series of handbrake turns (on icy roads). Sometimes I need a storyline to bear the aggressive behaviour out of the blue sky blue or understand the bear hug Dylan gives me one morning while we wait for his bus. I try to make sense of the unexpected twists and turns in the day, hunt down reason and explanation constantly. I suppose it’s a way of convincing myself I’m in control of events which, in truth, I can feel powerless to influence.

*

You look like Rafiki hit you over the head with his stick I said to my daughter the other morning. What is that supposed to mean Mum? she asked. I wish you wouldn’t talk in metaphors all the time. I’ve watched so many screenings of The Lion King with Dylan the narrative may be as real to me as the psychiatrist tells me it is likely to be for him. It’s a way of making sense of the world I suppose, a reality which leaves Dylan convinced that puppet boys walk and mermaids sing.

But it’s the house of bears I’ve been tiptoeing through recently, trying out chairs and eating porridge. I feel like Goldilocks I told a friend, close to tears about a burnt mouth and broken chair. For this is how I have come to view the process of looking for somewhere for Dylan to live: one setting too salty, another too sweet, one too small, another too large. Parents of autistic children spend a lifetime visiting residential schools, respite providers, independent living settings and care homes. I have been doing this since Dylan was three and I imagine it will continue for as long as I live – though I go on hoping I will find a forever place for Dylan before I wear out.

I am fussy I know (as I expect are all parents). I visited every specialist school within travelling distance of home when Dylan was school age and on the run-up to him leaving school a couple of years ago I viewed dozens of adult settings. I was one frantic Goldilocks. I didn’t know it at the time but I was lost in the woods, trying to find the bear house.

*
Then, last summer, something happened. Oh no. Handbrake quick!

*
goldilocksamazonThe first house was so sweet and tidy it made me gasp. Plump cushions in perfect order on the sofa. The chairs so soft! Alphabetical DVD collection. Pine table in the kitchen with heart-shaped ornaments and arts and crafts decor to die for. Oh this is lovely, I exclaimed, this is just so nice. I was making notes in my head: I could hang some dried flowers like that I suppose. Ooh. Nice teapot. Wonder where they found that. Love those tiles!

Well we like to think that just because you’re disabled doesn’t mean you can’t have nice things, the member of staff replied. The colour scheme in the bedrooms was terrific. Silver and purple! Not sure about the big floral print on the soft furnishings. A bit girly. Someone with a design eye had clearly had fun though. And no expense spared.

At my side, Dylan was pulling and tugging. He’d spotted the DVDs. Uh oh! I’m so sorry but you see he’s probably looking for something – oh you have Pinocchio – that will be it. I’m so sorry he’s upset the display. Here, I’ll get him to help put them back. Oh. Are you sure? Alright then. Probably best anyway. But thanks for showing us around. Yes, I’ll call.

It was possible, I realised on the drive home, to be too tidy (my daughter would laugh to hear me say that). I had been charmed through my own eyes but looking through Dylan’s was a different matter. Dylan likes his environment to be ordered but this house had been designed for the care staff not for the residents. The lesson was a useful one: if I was Goldilocks in the house of bears then I would have to test the chairs for Dylan not me. And the ones at this setting had been too soft.

*
The second house, a converted barn, could not have been more different; it was as if I’d looked for the opposite of the first (or perhaps, I considered, I just didn’t know what I was looking for). There were no chairs here; you brought your own. That’s one way of making sure they are the right size and softness I thought to myself, surveying the vacant empty bedroom. I could put Dylan’s bookshelves against that wall there. Plenty of space here for my bouncing boy.

I was glad to see that the communal spaces were relaxed and unfussy. Music was playing. A resident was dancing with her care worker. There were books around the room and an oilskin cloth on a dining table. Dylan and I sat down on the sofa to take in the view. Outside, in this quiet valley at the end of a long farm track, there were fields and a ruined abbey, a river and horses. Dylan would love the walks I thought to myself…

So, last summer, two members of staff from the barn house came to visit Dylan at home. They were very nice but they didn’t stay long and I knew they hadn’t asked the questions they needed to. It was too painless. Caring for Dylan – keeping him safe and happy – needed support they hadn’t asked me about. I’d volunteered some of it but not all. They couldn’t possibly put together a realistic plan for Dylan based on the information they had, I thought to myself. I looked at the young care workers sitting awkwardly, balancing their note books on their laps; perhaps my sofa was too hard? Later the manager phoned me, pushing for a decision. Otherwise I will have to re-market the room, he said. It stopped me in my tracks: Dylan might be in a marketplace but it was a home I was looking for.

*
When I arrived at the third house I all but collapsed into the chairs. At last, I thought to myself: here was somewhere I could imagine Dylan being comfortable and which I might relax into too. The house was not too tidy, not too shabby. There was a garden with a sensory area and trampoline. The rooms were spacious and airy. The ceilings were reinforced and light fittings adjusted for bouncing; Dylan could jump when he needed to! Most importantly, the staff were professional and relaxed, inspiring quiet confidence. This, I thought to myself, was a safe place and a home. Breathe now, breathe…

*
I knew this would happen, I told myself, as I sat parked up in a lay-by close to tears. I had no idea where I was. I didn’t recognise the neighbourhood at all. I had been driving for over two hours and was already more than an hour late. I was hungry and exhausted. I tried, again, to make sense of the directions I had printed before I set off. Perhaps if I tried to find my way back to the motorway I could pick up the route?

Unlike my son I have virtually zero visual-spatial awareness. I am hopeless at directions. I struggle to read maps and i cannot memorise routes and landscapes as Dylan does. Every time I drive down a road it is as if it is for the first time. ‘Get a Sat Nav Liz!’ friends say to me repeatedly. But I’m hopeless with technology too and gadgets make me nervous. Over the years I have missed ferries, taken a 100 mile detour and abandoned planned destinations because of my poor sense of direction. So it didn’t surprise me to be sitting at the side of a road in an unfamiliar town, but it did frustrate me.

Today’s appointment was important: I was supposed to be at a planning meeting at the ‘third house’. Although I had visited the setting twice before, I had taken the precaution of printing directions for myself and setting off with an hour to spare today. Why had this not been enough? How had I still managed to be lost? I decided to abandon and head home.

*
It was purely by chance that I stumbled across the house as I attempted to find my way out of the town. I stopped and rang the bell, wanting to at least explain myself. I hadn’t been able to telephone them as I didn’t have the number with me and hadn’t been able to figure out how to find it on my mobile phone (I did say I was hopeless at gadgets).

The people I had been due to meet were still at the house so we were able to go ahead that day after all. And so it was agreed that the house was appropriate and that as part of Dylan’s transition I would support him for tea visits in the new year. We can meet you as you come off the motorway and escort you to the house, the manager suggested as I prepared to leave. We don’t want you getting stressed with Dylan in the car. But I declined; I will have to learn the route if Dylan is to live here, I said.

*
goldilocks2en.wikipediaSo let me linger with this narrative a little longer – long enough, let’s say, to return and taste the porridge. And this turned out to be smoother than expected; I found the house with only one wrong turn next time. The visit went fine and Dylan and I were relaxed enough to stop for a drink en route home: we can come here sometimes, I told him, when I visit you in the new house.

But then something happened. That might sound suspiciously like ploddy narrative but on this occasion it really was a squeal of tyres: sccrreeeecch!

‘But why?’ people asked. This is not how the narrative was supposed to arc. The case for a residential placement for Dylan had been accepted. Funding was in place. Transition plans had been made. I wouldn’t advise doing that my GP said when I told her I was thinking of pulling out: you might not be offered anything else. Dylan’s social worker concurred: You could lose the funding completely, she said. But it was too late; I could already smell the rubber burning.

*
Why? What happened? The chairs were comfy and the porridge good. The beds were probably fine too – though Dylan didn’t get as far as testing them. So what was it that sent me into spin? It was, I told myself when I tried to rationalise it later, about community. The third house was only in the next town over but may as well have been at the end of the earth; we didn’t know the town and it wasn’t our world. Sure I could have learned the way and Dylan would have found new routes, but I came to believe I ought not to remove Dylan from the community he knows and loves. His life is in this city on the edge of fields and sky and Dylan belongs to it with his heart and nerves.

Surely, I said to Dylan’s social worker, we can find somewhere for Dylan here? I would be willing to compromise on some things on my wish list, I told her, if Dylan could stay in his own community. I want to be able to visit him on my way home from work and take him out to the pub on an evening and drop in for ten minutes or so when I feel like it, I said. I don’t want to have to drive for two hours to a place I don’t understand.

*
While this was true I was aware there was something else going on that might be truer still. When I hadn’t been able to find the house that day I told a friend, afterwards, that I needed to be careful not to let it affect my rational thinking. I have a tendency, I explained, to make magical meaning of such incidents. Perhaps I was meant to get lost? What if someone was trying to prevent me from making a wrong decision? Maybe Dylan wasn’t meant to go there?

goldilocks1Daft isn’t it? But if I hadn’t let at least a little bit of that magical thinking into my heart I might not have questioned the narrative arc and made “a sort of handbrake turn in the middle of it”. And as it turns out I’m glad I did because, soon after, I heard about some new provision close to where we live. When I visited recently I let myself believe there might be a magical purpose to everything: If I hadn’t pulled out of the other place I would have missed this, I sighed. I am optimistic it might not be long before Dylan is checking out the beds.

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

Note
I considered another setting for Dylan during this process which I don’t mention in this piece (but which I have written a little about here). Taking Jamie’s advice I avoided the real narrative arc in order to ‘move image to image’ through the Goldilocks metaphor. I like to think that this helped me to make sense of the experience differently than if I had faithfully reported events. [The omitted setting was one I considered at a time when Dylan’s ‘challenging behaviour’ required support levels which we were later able to reduce].

References

‘The Interview: Kathleen Jamie in conversation with Colette Bryce’ (2014) in Riordan, M. [Ed] (2014) Poetry Review, Vol. 104:4 Winter 2014, pp 26-43

The image of me (with car) was taken after a particularly tricky drive on the Isle of Skye. The photo of Kathleen Jamie is from http://www.Guardian.com. The images of Goldilocks and the Three Bears  are taken from (in order from the top) Amazon, Wikipedia and allposters.com

Dylan And The Dinosaur Of Anxiety

WP_20141228_18_22_41_ProSince last June I’ve been puzzling over some ‘challenging behaviours’ which Dylan developed out of the blue after twenty years of gentleness. The behaviours began with periods during which Dylan threw himself around violently and progressed to physical attacks on others, usually focused on ears. Prior to these episodes Dylan would often go into a trance-like state and during the incidents would appear not to recognise familiar people. At these times Dylan would be ‘unreachable’ and afterwards appear exhausted and seem not to have any recollection of events.

I have described my search for possible explanations for the behaviours, and the methods I used to document them, in previous posts (for example here and here). As my approach to working with Dylan (who doesn’t use speech to communicate and who has a significant learning disability) has always been that behaviour is communication I focused initially on environmental factors. There had been so much change in Dylan’s life that this seemed a likely explanation: in the previous few years he had experienced the death of his Gran and departure of his sister and had left education and care settings where he had been happy. Furthermore, Dylan’s provision on leaving school lacked the consistency he needed. These changes seemed a plausible explanation for Dylan’s distress.

The episodes declined following some adjustments to Dylan’s day care: full-time rather than part-time attendance, a change of support worker and an increase in Occupational Therapy all seemed to help. Other possibilities presented themselves. The ABC charts I used to analyse the behaviours suggested, for example, that they may be linked to food. Removing sugar from Dylan’s diet appeared to have an impact; the incidents which had been happening daily reduced to around once a week. I continued to puzzle, however, over behaviours which, while less frequent, became increasingly severe.

Neurological investigations

WP_20141228_18_22_49_ProDue to the symptoms which accompany the behaviours (the ‘absences’ and exhausted aftermath) Dylan’s GP referred him for neurological investigation. Epilepsy and schizophrenia can develop around the age Dylan is currently so I had specific concerns that Dylan’s behaviours may be due to the onset of one or both of these.

It took a while for Dylan to access an appropriate clinic. The first consultant we saw had no experience with ‘non-verbal’ patients with learning disability and autism and simply shook his head. The colleague he passed Dylan onto, however, was experienced and skilled. Dylan doesn’t tolerate medical interventions (I have written about this here and here) so I knew it would be challenging if recommended. Happily, the consultant whose clinic we had arrived at understood this.

WP_20141230_18_53_14_ProWithout medical investigations (MRI, EEG) he couldn’t say definitively but in his view, the neurologist said, Dylan probably wasn’t developing epilepsy or schizophrenia. The pattern of the episodes – their incidence and duration and Dylan’s response during and after – did not fit with the classic presentation. He couldn’t rule it out entirely – there were instances of epilepsy triggering the sorts of behaviours I had described – but these were rare.

It was much more likely that Dylan’s behaviour was a reaction to environmental factors or maturation. Puberty, the neurologist pointed out, can trigger emotional reactions which are difficult for any young person to make sense of; for Dylan, these feelings could be quite confusing. ‘He is a strong young man’, the consultant observed. ‘And you, if you will excuse me saying, are not a young woman or strong like this’. Keeping Dylan physically active would help, he told me.

I preferred to believe it was consultants who were getting younger rather than I who was getting older, I told him. But, I reassured the consultant, Dylan’s schedule was filled with OT and sports activities which, I agreed, were helpful. The consultant smiled. Then he told me how – years before, while practicing in WP_20141231_16_56_00_ProGermany – he had observed that the adults with learning disabilities in a institutional setting he visited exhibited challenging behaviour for 51 weeks a year. But once a year, he told me, the residents were taken on holiday where they had access to expansive grounds and were able to run free. During this week each year, he said, the behaviours disappeared.

The neurologist realised (I think) that Dylan has an active life and was not intending to draw a direct comparison between Dylan and the adults in his story. What he was reflecting, however, was that behaviour is usually communication. In a follow-up letter to me he wrote: “I thought that it was most likely that the behaviours you describe are dissociative coping behaviours. I suspect that they help Dylan to deal with some form of distress… Hopefully you and Dylan’s other carers will, in time, be able to learn even more about what is likely to trigger attacks so that his care can be modified and that attacks can either be avoided or contained more effectively.”

Environmental explanations

This makes sense to me. It is also the sense which Phoebe Caldwell, in her marvellous book Finding You Finding Me (Jessica Kingsley, 2006) makes of such behaviours. It isn’t a new book but I stumbled across it (via a circuitous route through poetry and Rowan Williams) only recently. How could I have missed it? I haven’t finished reading it yet but already it has changed my world. I’ll say more about the book in a later post. For the moment I want to share just a couple of things Caldwell has to say which seem particularly pertinent:

Families may be at their wits’ end – and sometimes feeling guilty at their despair… I meet staff who are being asked to cope with impossible levels of aggression and management who are unable to come up with solutions. In many cases, person-centred planning is interpreted as how we can fit individuals into our agendas. Quite a number of the people in the most deep distress are boys fighting their way through the hormonal jungle of puberty. (pp. 25-26)

As for those whose severe learning disabilities are compounded by autism and who cannot speak for themselves, all we can do is judge from their behavioural responses to people and their environment. From the evidence of the sometimes extreme behavioural distress, one has to presume that many of them do continue experiencing fragmentation [a process arising from overload in which sensory experience breaks down ] throughout adult life. They cannot help themselves through logic and communication: their only resort is to develop coping strategies, which can so often include severe aggression. (p. 35)

WP_20150106_16_15_42_ProI am sure that the consultant psychiatrist who has become involved with Dylan’s care has read Phoebe Caldwell’s work; I shall ask her when I meet with her again next week. Because as well as Dylan’s referral to a consultant neurologist I requested a referral to a local intensive support service. While this dual track (medical and social) approach could have resulted in conflicting verdicts, happily on this occasion the professionals align. The psychiatrist’s preliminary assessment, like the consultant neurologist’s, is that Dylan’s behaviours are likely to be due to environmental triggers. In particular, it is suggested, Dylan’s distress is probably caused by anxiety.

I have found this triangulation of professional perspectives helpful in that it has allowed me to go forwards with more confidence; a convergence of views on cause helps clarify response. In his letter to me the neurologist described Dylan’s behaviours as functional in that episodes ‘move [Dylan] on from experiencing distress to a place in which he cannot recall the distress and perhaps feels physically exhausted’. The psychiatrist has suggested that it is possible to help Dylan to ‘unlearn’ a behaviour that he has come to associate with such release from stress. At the moment Dylan is so fixated on removing my ears that the possibility I can re-direct this behaviour feels out of reach. The fact that the psychiatrist believes this is a reasonable goal, however, keeps me optimistic.

The unlearning

WP_20150114_08_23_04_ProI have had some unlearning of my own to do. Although I am not a neurologist, psychiatrist, care worker or speech and language therapist, working in education means that I am familiar with some of the theory and practice. Education is distinctive for its multi-disciplinarity; as well as combining ideas from sociology, psychology, history and philosophy, educationalists increasingly look to areas such as health and well-being and to the natural and human sciences. What this can encourage is a degree of comfort when dealing with other disciplines. Furthermore, my work in education means I am used to a cycle of monitoring, assessing, recording and reporting. It was easy and natural for me, therefore, to set up the sort of data-gathering exercise which I knew would be an important part of Dylan’s assessment.

Going into my initial meetings with professionals I reflected that I was probably ahead of a system which would (I presumed) require me to produce data I had already collected. It was with a sense of resignation then (not, I hope, arrogance) that in advance of the meeting I asked myself what a psychiatrist might tell me that I didn’t already know. Happily, however, there turned out to be plenty. With building interest and admiration I watched the psychiatrist bring her professional knowledge and understanding to the data I had collected. While I might be able to observe and record my son, I realised, what I didn’t have was this particular lens through which to filter the material. What I also lacked was the wide experience of other young men like Dylan which the psychiatrist could draw upon (for while Dylan may be different he could also be similar).

When I am supervising education research projects I tell students that what they are looking for in the data is ‘pattern and paradox'; the most valuable questions and answers, I suggest to them, will be found where similarities or differences emerge. After the first meeting with Dylan’s psychiatrist it occurred to me that she had adopted a similar approach. With her expertise and experience, however, she had quickly been able to identify the significant patterns I hadn’t found. My data charts had lots of good notes in them but they were in search of a tune; what the psychiatrist did, I reflected afterwards, was orchestrate.

The Dinosaur

WP_20150114_08_22_33_ProWhile supporting Dylan to ‘unlearn’ (inappropriate) coping responses will be useful, it is obviously preferable to modify the environment so as to reduce Dylan’s distress. The psychiatrist’s ‘orchestration’ of my observations of Dylan therefore focused on the identification of possible explanations for his anxiety. I liked the way she wove observations together to make connections I hadn’t considered.

One issue raised, for example, was that the first occurrence of the behaviour happened while Dylan was in overnight respite the week after I had taken my first break without him (which I wrote about here). It might be the case, the psychiatrist suggested, that although Dylan appeared to cope while I was away perhaps the following week, when Dylan returned to respite care for his regular overnight stay, he was made anxious by uncertainty as to how long I would be gone.

Some of the most challenging incidents have happened while Dylan has been viewing DVDs and during the meeting we were able to link possible anxiety about separation with Dylan’s reaction to certain film sequences. One scene which seems to cause Dylan particular distress is a moment in Dinosaur when an egg becomes separated from the mother. Those involved in Dylan’s care had been aware that such scenes can trigger behaviours. We had also noted the impact of my short break on Dylan and tentatively used the word ‘separation’. What the consultant was able to do, however, was confirm that this might be relevant while at the same time signalling its necessary complexity.

Necessary Complexity

WP_20150120_15_01_11_Pro-1The complexity is that we might have two dinosaurs rather than one. Because if it is the case that a son or daughter is anxious about separation, a mother’s intuitive response (especially an anxious mother) can be to avoid separation. Instead of planning for Dylan to spend increasing time away from me as preparation for leaving home, my instinct now was to keep him close. The dinosaur of anxiety could be mine, then, aswell?

But the psychiatrist wasn’t going to allow this; her job was to get rid of the dinosaur not let another one into the room. Dylan she said (offering another version of what the neurologist said) is in his prime; he doesn’t want to go collecting leaves with his mum. I looked at her aghast. How did she know that’s what we’d been doing at the weekend? B-b-but he likes doing that, I retorted. He liked it, she pointed out, because it was what he knew. What I needed to do was support him to do other things too, confidently and without me. In order to deal with separation anxiety, it seems, we have to learn to be separate. That will be a dinosaur of a challenge for me as much as for Dylan, I know.

The metaphor

WP_20150120_15_02_10_Pro-1Shortly after the meeting my attention was caught by a ‘hatch your own dinosaur egg’ pocket money toy (for £2.99). I couldn’t resist buying it as a Christmas stocking filler for Dylan. You put the egg in a jug of cool water and increased the size of the container as the hatching progressed; perhaps looking after the egg could help re-shape Dylan’s response to the film sequence?

The egg showed no sign of life for a few days and Dylan paid no attention to it. One evening, however, a crack appeared, quickly followed by a green nose. Dylan seemed alarmed so I moved the egg from his bedroom to the kitchen where we could keep an eye on it together. The rest of our holiday was spent checking the egg. Dylan’s response shifted, slowly as a dinosaur, from anxiety about its presence to curiosity. By New Year’s Eve the birth seemed imminent and Dylan interested. If it hatches before midnight, I told him, we’ll call her Eve. If she appears tomorrow she will have to be New Year’s Day-sy.

And so it was that after twelve days Daisy was born. Since her arrival she has continued to grow as Dylan – who seems to really like her – bathes with her twice a day. Unfortunately Daisy’s skin seems to be ‘pruning’ badly (the warm water I suspect) and we may soon be faced with a tough decision about the future. Daisy may only be a metaphor, but she could be quite a useful one…

 Reference:

Caldwell, P. (2006) Finding You Finding Me. Jessica Kingsley

All photographs are of Daisy.

Ways Of Learning: examples from a home education programme

books etc 016In my last post I reflected on a home learning programme which I undertook with Dylan in the years immediately following his autism diagnosis. In that post I referred to a framework for home learning described by Aboucher and Desforges:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

In this post I provide examples of Dylan’s home-based learning within each of these categories. Although Aboucher and Desforges’ framework is not based on a specialist learning environment I think it is equally applicable for an autistic child with a learning disability. As the examples illustrate, however, flexibility is required when interpreting the categories.

a) Reading/library visits

Although Dylan doesn’t ‘read’ he has always loved books. Below are some ways in which Dylan engages with literacy-based activities and my reflections on their possible value.

  • WP_20150107_09_12_58_ProReading the same book for weeks on end. I used to try and move Dylan on to other texts but later realised that this repetition suits Dylan’s learning style and builds his confidence.
  • Reading multiple copies of the same book. I have speculated on possible reasons for this here.
  • Reading the same page in a particular book. Dylan keeps favourite books open at ‘special pages’. At home he keeps these close at meal time and bath time. I imagine that these pages are comforters for Dylan or that the characters on the page are real to him and are his friends, sharing Dylan’s key activities.
  • Turning the pages of a book rapidly, usually from back to front, sometimes while looking away or with eyes closed. I imagine Dylan might be counting or playing memory games.
  • Carrying books around without opening or looking at them. There are eight books which go everywhere with Dylan. Dylan doesn’t look at these outside the house; sometimes, when we are in a cafe, I might say ‘why don’t you have a look at one of your books Dylan?’ But he never wants to. Dylan has the books with him not as we might, in order to read at opportune moments, but as comforters perhaps, or because they are friends, or he enjoys their weight.
  • books etc 007Using books as objects, for example to sit on, lick, or wear on the head. Dylan’s sensory and physical relationship with books as artefacts is a valuable part of his developing literacy. Dylan accepts my standards of care for library books, I think, because he has his own copy of favourite books (which I accept will become wet, dirty and torn).
  • Reading homemade books. These can be quite simple: scrapbooks, for example, laminated pages or inserts in plastic sleeves of an A4 folder. The books can have a narrative arc (for example ‘using the toilet’) but more often the books I made for Dylan were simply pages of things which I thought would interest him.

For Dylan ‘reading’ is usually a private activity. This was hard for me to accept, initially, as my expectations and instinct about early literacy were that it should be shared. In time I learned to give Dylan the space he needed however. I developed the following techniques for offering support:

owl babies~ sitting silently next to Dylan with my index finger held out (I discovered that Dylan would take my finger and point to something in the book if he wanted me to name an object or clarify something);

~ sitting next to Dylan offering a simple commentary as he turned the pages (talking about the book rather than reading the narrative);

~ sitting at a distance ‘modelling’ reading by turning the pages of a book and using simple language (‘Percy sad’);

~ memorising some of Dylan’s favourite books and speaking these to Dylan at various times of day. In time this triggered him to fetch the book.

There are now a few books which Dylan will allow me to read with him. It is always important, however, that I let Dylan take the lead, e.g. selecting the text and setting the pace for me to read as he turns the pages.

b) Numbers and letters

books etc 005Numbers and letters are abstract symbols. Some children with an autistic spectrum condition are comfortable with this and demonstrate a facility for mathematics or for learning foreign languages. This is not the case for Dylan, however, for whom numbers and letters as symbols have never appeared meaningful.

At 20 Dylan will identify marks on a page as ‘why-ya’ (writing). He will also tell me that I am ‘why-ya’ if he sees me with a pen or pencil and piece of paper. Interestingly, however, if I am typing at a keyboard he will not identify this as ‘why-ya’ but rather ‘poo’ (computer) which he sees as a different activity entirely. I’m not sure if Dylan connects letters with communication (i.e. whether or not he understands the link between reading and writing). I am even less sure that Dylan associates number symbols (1,2,3 etc) with the thing(s) they represent. Dylan doesn’t have a word for ‘numbers’ and hasn’t ever told me that a symbol is a ‘number’ in the way that he has identified marks on a page as ‘why-ya’. I suspect that, for Dylan, numbers and letters amount to the same thing: abstract marks on a page.

I did a lot of fairly conventional number and letter work as part of Dylan’s home learning programme when he was young. Mostly this involved me trying to teach Dylan to sequence numbers and letters and to copy them. Dylan did not enjoy this work and never showed any real understanding of it. If I had my time again I wouldn’t bother. I continue to try and develop Dylan’s awareness of numbers and letters through alternative approaches, however. Activities which Dylan seems to enjoy and which have had some impact include:

  • books etc 006Counting things in pictures (the windows in Ulm cathedral is a favourite activity) through chant and point. Whenever Dylan pays attention to something I look for objects we can count, e.g. ‘let’s count the stars’.
  • Playing dominoes (this may be more about matching the shape of the dots than about number but I try to enforce the number link by counting dots when we play).
  • Focusing on meaningful sequences of numbers and letters rather than abstract sequences such as the alphabet. The  sequences of letters which Dylan recognises currently are D-y-l-a-n and (possibly) m-u-m. It has taken many years of exposure to the letters in Dylan’s name for him to recognise them. Even now I don’t think that Dylan ‘reads’ his name; he likes pointing to the letters on his door and for me to chant them, but he is as likely to indicate them in reverse order (but get cross if I sound them out backwards).
  • Gradually replacing familiar pictures with letter sequences. I tried doing this as part of Dylan’s home learning programme by blanking out some of the pictures in his ‘red book’ and in lotto games. On reflection I tried this too early. I should have allowed more time for Dylan to feel confident communicating with photographs, pictures and symbols before moving him onto letters. Attempting letters too early created a sense of failure in Dylan and frustration in me (or perhaps vice-versa). My sense is that Dylan is only now moving into the symbolic stage of communication; I have had some success this year with makaton signs and symbols and have therefore recently introduced the sequence m-u-m.
  • books etc 002Introducing numbers and letters in a naturalistic and comfortable setting. I have introduced m-u-m on Dylan’s visual timetable board because it’s an object which is important to him, that he is comfortable with, and which he interacts with on a daily basis. For other children and adults this might be DVDs, i-pads, the fridge door etc.
  • While technology supports some children to develop an awareness of numbers and letters, Dylan doesn’t seem to recognise word processed text or screen-based letters and numbers. Dylan’s learning style is kinaesthetic; he needs to hold a physical letter or number in his hand and engage with it as an object. For learners like Dylan, play letters and numbers are important for years beyond what might be considered ‘age-appropriate’.

c) Shapes

wikipediaI did ‘shape work’ with Dylan as part of his home learning programme but am fairly confident that he still doesn’t recognise the words ‘square’, ‘circle’ or ‘triangle’. And who cares? Is it going to make his life any less rich? Does it matter if he doesn’t know the word to describe a shape? As with letters and numbers, Dylan needs a physical object in his hand to recognise the shape of it. I’m sure that he has an intimate understanding of a triangle; if I put one in his hand he would explore it with all his senses (especially if it was a piece of Toblerone). But he wouldn’t recognise the name for it. And he wouldn’t push it into a ‘shape sorter’ with any enthusiasm or success. In fact I used to think Dylan tried to push shapes into the wrong holes deliberately, for a laugh.

books etc 009Autistic children have good visual-spatial awareness and it is generally assumed that they therefore enjoy doing things based on these skills such as jigsaws. Dylan, however, doesn’t show any enthusiasm or particular ability for jigsaws. I have never been sure whether this is because he finds them difficult or because he finds them boring; although mostly Dylan doesn’t complete jigsaws, sometimes he surprises me by showing that he can. Actually I’m with Dylan on this one; I’ve always found jigsaws fairly pointless. Nonetheless I scheduled them in Dylan’s home learning programme because I thought I should. On reflection it was a waste of time; there were plenty of other things we could have been doing. Some of the activities I did (and still do) with Dylan which develop his visual-spatial skills and which he enjoys include:

  • Matching games. It is easy to make lotto games of objects which your child is particularly interested in or of new vocabulary which you want to teach. While this isn’t about ‘shape’ as such, it is about pattern recognition which involves the same cognitive processes.
  • Flash cards. A deck of cards is tactile and comforting; you can shuffle, sort, browse, deal, distribute, drop, pick-up, check, lose, duplicate and throw away. So many wonderful possibilities. Dylan liked cards. I probably didn’t exploit this interest as much as I could have.
  • Found shapes. As a writer I love to stumble on poems which exist without having been written: the found poems we encounter if we keep our hearts and minds open. And shapes are even easier to find than poems; food is a great place to look (I’ve already mentioned Toblerone) as is the great outdoors. I am currently working on pointing shapes out to Dylan in the hope he might make the links between them and recognise the abstract concept of ‘triangle’ as something which applies equally to a piece of chocolate and a road sign.

d) nursery rhymes and singing

education reflections 055Some of Dylan’s most effective exposure to language has been through musical resources; I suspect this is because nursery rhymes and songs use devices such as chorus and repetition which create the pattern and structure which Dylan responds to. Although Dylan has an ambiguous relationship with singing due to his auditory sensitivity (I have written about this here and here) music has been one of the most important things in his life and seems increasingly significant as he gets older.

Nursery rhymes and singing are used in early years education not just because of their intrinsic value but as a vehicle for learning. They can support the development of pre-lingual skills such as turn-taking and imitation as well as developing social awareness (for example emotional understanding) and cognitive knowledge (for example in relation to literacy and numeracy). While I realise this raises issues around age-appropriate activities (which I have reflected on here) I continue to engage Dylan through nursery rhymes and singing on a daily basis. Some approaches which I have found particularly useful include:

  • music 029Making compilations of nursery rhymes and songs for Dylan on key themes to support specific learning (e.g. ‘parts of the body’ or ‘counting’)
  • Putting nursery rhymes on Dylan’s i-pod so that he can listen to them privately and when out and about in the community (I have written more about this here)
  • Encouraging Dylan to listen to nursery rhymes as part of a bed time routine (I think Dylan has learned a lot from his years of routine listening)
  • ‘Embodying’ nursery rhymes through actions: some of Dylan’s favourite nursery rhymes, and the ones he seems to learn most from, are those with accompanying actions.
  • Exaggerating actions to nursery rhymes in order to emphasise communicative purpose.
  • Making changes to the words of familiar nursery rhymes so that Dylan accesses meaning as well as sound. My daughter, for example, changed ‘one potato, two potato’ into ‘one banana, two banana’ one day, changing the shape of her hand from a fist to a flat curve. Dylan found this hilarious and still enjoys changing potato to banana.
  • Exaggerating singing of nursery rhymes in order to emphasise features of language such as stress, intonation, tone and pitch.

Final reflection: the importance of language

independence 016What makes the education system fundamentally inaccessible for many children is the role of language in the delivery of the curriculum. A key challenge for parents and educators is therefore how to make learning accessible for children who do not speak or use an alternative communication system. Dylan is currently developing some echolalic speech but for the majority of his life, and throughout his schooling, has been classed as ‘non-verbal’. It is perhaps not surprising  that so many of the suggestions in this post focus on language development; it is in its potential for adaptations to language, I suspect, that a home learning programme may be of particular value.

Reference:
Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images of Owl Babies and the Toblerones  are from Wikipedia. The opening photograph of Dylan reading Postman Pat was taken during a holiday in France in the late 90s, at the time of Dylan’s home education programme. The closing photograph of Dylan at a climbing centre (holding a copy of Pinocchio) was taken just before Christmas 2014.

Education-Based Intervention In Autism: Dylan’s home learning programme

education reflections 005In a previous post I reflected on the pressure which parents can feel under to take action in the aftermath of an autism diagnosis; early intervention, we are told, can play a critical role in future outcomes. Following Dylan’s diagnosis 18 years ago I trialled a long list of therapies. These interventions, I suggested in my earlier post, could be categorised as sensory; dietary and medical; behavioural; and educational. This is the last in a series of posts reviewing these approaches in turn.

Orchestrating interventions

No single approach is sufficient in itself and I doubt there are any parents or professionals who focus exclusively on one of the four categories of intervention I identify above. The question, for most parents, is the balance between the categories and the way as education reflections 008caregivers and educators we orchestrate them. In my introductory post to this series I identified some of the factors which impact on our choice of therapy: the child; parental values; the available resources; and the ‘dominant discourse’ abut autism at the time. As well as influencing our adoption of individual therapies, these factors affect the way we combine them.

One hypothetical parent of a pre-school child, for example, may opt for a gluten and casein-free diet with sensory-based interventions such as weighted blankets, massage, music therapy and gross motor activities. Such a parent may adopt a non-directive approach, preferring not to use behaviourist interventions or to offer their child formal education. Another hypothetical parent, meanwhile, may focus on the re-shaping of behaviour through a programme of rewards and reinforcers based on behaviourist education reflections 009philosophy. Such an intervention would include educational input as behaviourist approaches are used to facilitate cognitive as well as social learning; the framework for the educational content, however, would be social.

The two hypothetical parents in the above examples are a bit stereotypical. While it is often the case that a family opting for a behaviourist programme will place less emphasis on sensory approaches it is possible to mix and match eclectically from the four categories. To a large extent this was the approach I took with Dylan. However, as my earlier posts in this series indicate, the different interventions map onto distinct sets of ideas so choosing a particular intervention also involves adopting a particular philosophy.

Why education?

education reflections 012The four categories of intervention activity are underpinned by philosophical ideas because they align with academic disciplines and thus with theory as well as practice. Sensory interventions, for example, draw on ideas from Occupational Therapy while behaviourism is based on theory from Psychology and dietary and medical interventions align with disciplinary fields such as biochemistry and neuroscience.

As an academic discipline as well as a field of practice, education offers activities underpinned by theories about learning and child development. Given my work as an educator, this was a comfortable place for me; the language and philosophy felt familiar even in the transformed landscape of an autism diagnosis. After half-hearted trials with other interventions, and an abandoned attempt at a behaviourist programme, education was therefore what I chose.

Parent and educator

Initially I proceeded by instinct, aware that my assumptions about teaching and learning could be a burden rather than an asset when working with Dylan: in order to become a better educator I had to do what I asked of my students and unlearn some of my beliefs about education. Although I tried to bracket my professional experience I did draw on some practices from the workplace such as systematic planning and recording. I probably didn’t realise at the time how useful this was but looking back I can see that the framework it provided was helpful for me as well as for Dylan.

It isn’t easy for a parent to take on the role of educator. The most significant challenge I faced was without doubt my ability to cope emotionally. The inevitable frustrations and setbacks can be hard when you are emotionally involved with the child. You cannot walk away from the situation at the end of a difficult day. It can be harder to evaluate learning objectively; sometimes I wore rose-coloured spectacles and sometimes dark lenses. Furthermore, the potential for confusion of role between mother and son, teacher and child, presents particular challenges in the context of autism.

It is perhaps not surprising that many parents prefer to employ people to work with their children – indeed, this is recommended by behaviourist programmes. This wasn’t an option for me however; finances didn’t stretch to employing assistants for Dylan. Besides, I argued to myself, I had the necessary skills as well as instinct.

Intervention by instinct

education reflections 053It was by instinct, however, that I developed what I called ‘video teaching’. I’m not sure whether it was original (probably not) but I came up with it one night, alone and restlessly awake, praying for a good idea by morning. Dylan would have been around four years old at this point and his love of video was already clear. The only time Dylan was still was watching Pingu, Postman Pat or Thomas the Tank Engine. He would sit on a cushion in front of the television, periodically flapping his hands or making an excited ‘shushing’ noise with a little tremble of his head. However often Dylan watched, he was always engaged; this, I thought to myself, was the focus I needed.

education reflections 057It was the late 1990s, before the introduction of digital technology. Fortunately I had access to recording equipment at work so one holiday I borrowed a large, heavy camera. With the help of my six year old step-daughter, husband and mum I made ‘home teaching videos’ for Dylan. These involved flash cards and objects in real life contexts. In one scene, for example, my mum held a fork and flashcard in her hand while saying: Fork Dylan. It’s a fork. F-O-R-K. Fork. Then she mimed eating with the fork. Having the flashcard and the object, and hearing the word pronounced repeatedly, was an attempt to engage Dylan as a visual as well as an aural learner. It also allowed for the possibility that although Dylan didn’t speak he might be able to read (this hasn’t turned out to be the case).

Dylan loved the videos; he would happily watch them through over and over, seeming to enjoy seeing familiar people and objects on the screen. I’m not sure how much Dylan learned from the videos – he almost certainly didn’t engage with the flashcards and at 20 still struggles to recognise some of the vocabulary – but I think they were worthwhile nonetheless. Video teaching taught me that a home learning programme is a good way of involving the wider family (my step-daughter had great fun making the videos). It also demonstrated to me that Dylan could focus if I developed materials which were engaging and in a format with which he was comfortable.

The home learning environment

education reflections 062As well as instinct I drew on approaches to working with autistic children which were current at the time. I used ‘start-finish’ baskets as advocated by TEACCH programmes, for example. Although I had rejected behaviourism for Dylan I borrowed the approach to pace and rhythm adopted by the PEACH programme; working in short bursts seemed appropriate for Dylan and chunking up the sessions provided me with a robust structure when planning. I also borrowed some instructional techniques and based Dylan’s work space on a mash-up of TEACCH and PEACH; eclectic, but so what if it worked?

education reflections 054At the time, my focus was very much on finding alternative ways of working with Dylan. I didn’t believe the child development manuals had anything to offer us and the school curriculum seemed irrelevant. As far as I was concerned, what I had to do with Dylan was utterly different to the approach I took with his neurotypical sister. When I worked with Dylan I felt as if I was somewhere otherly and without a map; I was, I thought, a cartographer.

Marking a student’s essay recently, however, I read something which gave me pause for thought. Aboucher and Desforges, my student informed me, describe a Home Learning Environment (HLE) as one that is made up of:

reading, library visits, playing with numbers and letters, playing with shapes, teaching nursery rhymes and singing.

education reflections 028I read the list of activities (which relate to any home learning rather than  specialist provision) through several times. What struck me is that it was a perfect description of my current life with Dylan; in the course of a week, we do all of these things. There is a sense in which time stands still, or moves slowly, when living with autism; at 20, Dylan is rehearsing many of the same skills he was at five. I fetched my crate of home education resources from the cellar and looked through them; the early intervention activities I did with Dylan fitted the Aboucher and Desforges’ framework well.

education reflections 049I probably didn’t do anything different with Dylan 16 years ago, in terms of focus, than an early years educator would do with any child. What was different, however, was the way in which Dylan engaged with the books, numbers, letters, shapes, nursery rhymes and singing. In a linked post I provide illustrations which, as well as demonstrating the role of a HLE in supporting an autistic child, offer practical ideas for parents within the categories identified by Aboucher and Desforges.

Hindsight standing still

education reflections 050If the activities I do with Dylan haven’t changed in the last 16 years happily I have; I can still enjoy that wonderful thing, hindsight, while standing still. And if I had my time again I would do some things differently; I would, for example, focus more on interventions based on OT (an earlier post describes activities I think particularly helpful). While I did fine motor work with Dylan (cutting, threading, shape sorting) I probably didn’t place enough emphasis on physical activity. There was only limited understanding, at the time, of sensory profiling; of the various developments in the last couple of decades I would say that our knowledge of sensory issues has made the most significant difference to the support we can offer our children.

education reflections 055In the introduction to this post I restated the four factors I believe drive decisions about intervention: the child, the parent, the available resources and the dominant discourse. A better understanding of Dylan’s needs when he was diagnosed might have led me to adopt a sensory-based approach to early intervention. While my choice of intervention may not have been sufficiently focused on the child, however, neither was it driven by prevailing discourses at the time; I rejected the use of behaviourist and dietary/medical interventions as a potential ‘cure’ for autism. While I’m not uncomfortable with my decision to focus on educational intervention following diagnosis, Dylan didn’t benefit from my HLE in the way I had hoped.

On reflection, the decision to focus on educational interventions was based on my needs not Dylan’s. While working intensively with Dylan developed my practice, Dylan didn’t acquire the skills I had intended. Early intervention, it turned out, would bring about changes in me, the parent, rather than in the child. In the years since, I have wondered if the transformation of parental attitudes and beliefs is the main value of such initiatives. This surely is invaluable? A child’s parents are his or her greatest resource and time invested in the relationship is, perhaps, the mother of all interventions.

Reference:

Desforges P. and Aboucher, A. (2003) The Impact of Parental Involvement, Parental Support and Family Education on Pupil Achievement and Adjustment: A Literature Review. Queen’s Printer: Exeter

Images:

The images in the post are examples of my early planning and recording, Dylan’s ‘work’ from the time and pages from his ‘red book’, a resource I developed to support the home education programme.

Thank you for supporting our blog in 2014

Best wishes for 2015

Liz and Dylan

:-)