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 🙂 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 🙂

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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 Next Step

Another Place July 2016 002This summer I’ve been taking Dylan on overnight trips to different locations instead of for a week’s holiday to one place.  Dylan loves staying in hotels and he responds well to variety so our summer trips have proved very successful so far. It also means that I am supporting Dylan for just 24 hours at a time which is sensible given that he is usually on 2:1 support ratios in the community. I love the time I spend with Dylan but it is demanding physically and mentally.

The overnight breaks have allowed me to take Dylan to places which are a little too far to travel to in a day but which we haven’t managed to visit from our previous holiday destinations. Recently we have enjoyed visits to Whipsnade Zoo and to see Anthony Gormley’s Another Place installation at Crosby Beach.  My aim is to sprinkle these trips across the summer so that Dylan and I are able to enjoy the equivalent of a week away together.

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Another Place July 2016 031Taking a holiday myself is something that has been on my ‘bucket list’ since Dylan moved to residential care.  Although I have had occasional weekends away over the years I’ve never been able to consider more than this. Once free of caring responsibilities, however, I still didn’t find it easy to contemplate. For the first half year I was focused on settling Dylan into his new home; as this involved regular visits there wasn’t the space for a break.  Since then I’ve managed to find all sorts of reasons not to go away: work; decorating; poems; money.  The usual excuses.

But sorting through drawers one day I found a voucher for ferry travel to France.  A few years ago, when Dylan was very anxious and his ‘challenging behaviour’ at its height, I decided to cancel a holiday. Although I had travelled alone to France with Dylan before, it didn’t seem wise that summer. The holiday company with whom I had booked the gîte weren’t sympathetic but Brittany Ferries didn’t hesitate to issue me with a voucher for replacement travel. I had filed it away, assuming it would be used when Dylan was settled enough to travel at some point in the future. Suddenly, it seemed, the future had arrived: the voucher was due to expire August 20th this year.

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Another Place July 2016 036Since Dylan has moved to residential care I’ve realised, and come to accept, that he needs more support than I can give. Dylan benefits from 2:1 support in the community and responds positively to a ‘fresh face’ at times of anxiety; having access to more than one adult, so that a support worker can be strategically swapped, is good for Dylan and a more positive experience for his carer(s). These are things which aren’t possible  when supporting Dylan alone. This is partly why I’m limiting the time I am in sole charge of him this summer and explains why, with some sadness, I have decided that it’s not possible for me to take Dylan to France by myself again.

But what to do about the voucher? Without it I would probably have hummed my way through the summer, fiddling with paint and trying to write a poem. It pained me, however, to sacrifice those ferry crossings. So oh joy and delight when a girlfriend declared she would be happy to put up with accompany me to Brittany for a week. Fantastic. We agreed easily on a location and gîte. Figuring out the crossings and bicycle rack was a bit trickier but we worked it out. What I was especially looking forward to, I told my friend, was reading on the ferry.  During Channel crossings with my children I had watched others doing this and hankered after such space. Instead of having to hire a cabin for meltdowns and timeouts, and be on high alert, this time I could relax with a book.

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Another Place July 2016 043Planning the holiday wasn’t all plain sailing, however. In fact I had a whole bag of worries about it which I discussed at length with the manager of Dylan’s residential home.  How would Dylan manage the longer than usual gap between my visits? What would we tell him and how? If there was an emergency, how would I be contacted? What if I couldn’t be contacted? These might be quotidian worries but they are not insignificant in the context of autism where happiness depends so much on reassuring routines.

Facing these anxieties and challenges seemed to be a necessary next step in the transition process, however.  The parents of other residents, I was told, had experienced similar anxieties the first time they had left their son or daughter in order to take a holiday by themselves. The staff would keep Dylan busy while I was away, I was assured, and make sure that his favourite activities were scheduled.  Confident that I had considered the situation from all angles, I booked the trip.

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Another Place July 2016 040What I hadn’t factored in, however, was Daesh.  As the attacks in Europe increased in frequency and scope, the possibility of being caught in a random act of violence ratcheted up my anxiety. Rather than worrying about how Dylan would cope with my temporary absence, I started to consider the implications of my not coming back at all. The scenario was awful but not unthinkable. We are more likely to be victims of a traffic accident, my friend pointed out, especially on the wrong side of the road. She was right. Why then was Daesh increasing my anxiety about being away from Dylan?

Having a dependent child or adult to care for makes us feel vulnerable. In such a situation there can be a tendency to become risk-averse, as I explore in this post. But what are the implications for autistic children and adults at times of conflict? I reflected on some possibilities in this post and in this book review.  When I wrote those posts, not so very long ago, the war in Syria felt like news from another country. Now, suddenly, it involves us all.

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Another Place July 2016 039I thought I’d let you know, I told Dylan’s care home manager, that I’m having second thoughts about my trip to France. I probably would go, I told her, but I was trying to think through the implications of the recent attacks.  I needed to be comfortable with my decision, I explained, or else I wouldn’t be able to relax. Earlier that day I’d watched a public information video about what to do in the event of  a ‘terrorist attack’. The advice came down to this: Run, Hide, Tell.  I watched the video through trying to imagine how I’d follow the guidance if I were with Dylan. It made no reference to people with disabilities or the vulnerable. It seemed to assume we are all fit, agile, able-bodied and verbal.

It would be impossible to keep Dylan safe in such a situation. He wouldn’t follow an instruction to run. He doesn’t understand the concept ‘hide’. He would behave erratically and probably noisily, drawing attention to himself and others. One of the pieces of advice in the video is to always show yourself to be empty-handed, particularly at point of rescue. This is important, apparently, because police might otherwise assume you are holding a weapon and mistake you for a terrorist. There is no way that I could persuade Dylan to show you his hands; in the community he hangs tight onto the arm of whoever is supporting him, burying his hands deep under their arms. If police are casting around for someone likely to be concealing a weapon, Dylan may well arouse their suspicion.

So I asked the care home manager what training staff had received for managing a ‘critical incident’ while supporting a resident in the community. Was this covered as part of  staff training? And given the current level of anxiety among the general public, were staff aware that the erratic behaviour of a resident might cause alarm and suspicion in the community? The manager assured me that staff had received training for explaining autistic behaviour to the general public but couldn’t, of course, allay my fears about a terrorist incident. I think we just have to get on with our lives, she said.

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Another Place July 2016 004I’d been letting three things get in the way of me and Dylan living our lives: my anxieties about his ability to survive an incident; my concerns about my own safety given his dependence on me; and my worries about not being there for him.

But my response to these anxieties, I realised, had been what my daughter would call ‘cotton wool’.  Would you put that cotton wool back in your pocket? she asked me one day as I told her to take care on some play equipment. I suspect I’ve never quite taken the cotton wool from Dylan but I have, at least, learned to let go of it a bit since he moved to residential care.  But wrapping myself in cotton wool instead? I can only imagine what my daughter would say to that.

Happily, the friend I will be holidaying with understands these anxieties and has listened while I talk them through. Something I’ve found useful is identifying a practical response to an anxiety: things that we will and will not do while we are away, for example, and how we would travel home in an emergency. Such concrete plans feel  better than the softest of cotton wool – even if, in truth, they probably wouldn’t be much use. I suppose that’s also the point of Run, Hide, Tell

 

wishing you a safe and happy summer…

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The photos of Anthony Gormley’s Another Place (on Crosby Beach) were taken by Liz, July 2016.

Easter, Restored

Wales March 2016 160Dylan and I had a tradition, for many years, of going away for Easter week; in the last ten years we have spent delightful holidays in Scotland, Ireland and Wales as well as across England and particularly in our beloved Yorkshire Dales. Since Dylan became unsettled in 2013, however,  I haven’t been able to take him away by myself and our Easter breaks have been a thing of the past.

In the new year, with Dylan continuing to do well in specialist residential care, I felt confident enough to book a cottage for Easter week. I chose the Llŷn peninsula in Wales; as well as beautiful walks there are steam trains, churches, castles and slates mines, all of which Dylan enjoys. On the run-up to the holiday I temporarily lost my nerve after an incident with Dylan while I was out in the community. I had struggled to manage the situation on my own and was worried about my ability to keep us both safe if Dylan became distressed in a vulnerable location while we were away. ‘Had I been foolish to plan the holiday?’ I asked Dylan’s care home manager. But she was reassuring:  I had thought things through and based the holiday on Dylan’s needs as well as my own; if I was prepared to be flexible and return home if necessary, she didn’t see any reason why I shouldn’t give the holiday a try.

So on Good Friday Dylan and I set off on our trip. I think we were both really happy to have our Easter tradition restored; there was something wonderfully familiar about the time, like deep memory. Because there have been significant changes in our lives, however, there were things we had to rediscover about each other. Here are seven things I learned…

  1. Dylan’s key worker is key

Wales March 2016 001This was the first time I hadn’t packed for Dylan myself. I wondered whether he would have the clothes with him that he needed and enough music, books and films for the week. What I discovered, however, is that I am not the only person who knows what Dylan needs 🙂 Apart from a belt and DVD, Dylan had what he required.  Furthermore, Dylan’s key worker had prepared symbols, choice boards and day and weekly timetable strips for Dylan to take on holiday.  She had tried to think of all the things Dylan might need to communicate while we were away. This support proved invaluable!

  1. The schedule is essential

Wales March 2016 008One of the first things Dylan did on arrival at the cottage was give me a timetable strip to fix for the next day. I suggested we might spend the morning looking through leaflets to pick some activities for the week followed by a trip to the supermarket and a walk on the beach in the afternoon.  The weather during the holiday was a mix of blue blown sky and heavy rain; the first day, however, it poured.  After lunch, therefore, I suggested a film. Dylan hovered nearby. ‘Why don’t you get a film?’ I repeated. He crossed his arms.  ‘Dylan’, I said, ‘do you want to watch Pinocchio? Or The Good Dinosaur perhaps?’  Fixed Stare.  After a while he disappeared. I got out a book and settled myself on the sofa. Soon after, Dylan reappeared, timetable in hand, showing me the beach.

We had a lovely walk, of course, and I was glad I hadn’t been so easily let off the hook; we were on holiday in the UK after all and walking the beach in rain is part of the deal.  I was aware that Dylan’s support staff have a method for ‘change of schedule’ and that Dylan is usually happy to accept this but I didn’t attempt it again. Instead, I was careful to promise only things I was pretty sure we would be able to do. What I discovered was that as long as we followed the schedule Dylan didn’t mind if something went wrong.  The day we visited ‘Electric Mountain’,  for example, all the tours were full.  At the booking desk, I felt my heart sink; there would be a scene I was sure. But Dylan was fine; he seemed to understand and accepted my proposed alternative of a steam train by the lake.

  1. It’s getting to the start of something, not the end, that matters

Perhaps this was because, for Dylan, it is getting to the start rather than the end of something that seems to matter. During the week we had a routine of preparing Dylan’s schedule each evening, sifting through the leaflets and symbols to build the next day’s activities. And each day, wherever we went, Dylan carried his schedule with him, pulling the symbols off one by one until the strip was empty. Early in the week I puzzled as to why Dylan removed the symbols  before he started the activity rather than when he had finished it which seemed counter-intuitive to me. I ended the week, however, appreciating the sense of achievement in getting to the starting point rather than the finishing line.

  1. Technology sometimes saves the day week

Wales March 2016 018Holidays might be a welcome break from email and social media but I was glad, on Easter Sunday, that I hadn’t left all our technology at home.  Dylan doesn’t use an ipad to communicate but he has one and at the last minute – literally as we were saying goodbye to his key worker – I decided to bring it with us. I’m not very comfortable with technology  so I didn’t think it likely I’d be able to support Dylan with his ipad while we were away. In the event, however, it virtually saved the holiday.

‘Memo’ Dylan started saying to me loudly and repeatedly as soon as we arrived at the cottage on Good Friday evening: ‘Memo.’  I knew the word was familiar but I hadn’t heard it for a while and couldn’t quite place it. There were pictures of clown fish on the wall of the room Dylan was sleeping in and that night it occurred to me that he was perhaps wanting to watch his Nemo DVD. I looked through the films he’d brought with him; his key worker had restricted Dylan to seven films and Nemo wasn’t among them.

Next day, at the supermarket, Dylan made a beeline for the DVD display. ‘Memo’ he said repeatedly as he flicked through all the racks systematically: ‘Memo’.  There was no Nemo. Dylan became distressed. ‘We will look somewhere else’, I told him. Dylan picked up a copy of The Good Dinosaur. ‘That’s a good choice’, I said. Dylan wasn’t entirely satisfied and continued asking for ‘Memo’ while we shopped. ‘What does he want?’ the check out girl asked. ‘Nemo I think’ I replied:  ‘Do you know anywhere he might find it today?’  But she didn’t. ‘There isn’t anywhere else in the town really’, she replied. ‘We might find Memo’, I reassured Dylan, ‘when we go on our train trip tomorrow’.

What I’d forgotten was that the next day was Easter Sunday and the shops would be closed. Dylan hadn’t forgotten about ‘Memo’ though.  Although he enjoyed the trip his anxiety about finding ‘Memo’ was palpable. When we arrived back at the end of the day Dylan prostrated himself on the station platform in protest. These ‘lie down’ protests can last a while and escalate; I looked at Dylan lying in the rain, face to the ground.  What could I do? Then I remembered the ipad…

A few years ago, when we took a short break by plane instead of car, I had downloaded a couple of films onto Dylan’s ipad. If we went back to the cottage, I told Dylan, I could get try to find Nemo. Eventually I persuaded Dylan to get up – we headed back towards the car. ‘Memo’ he insisted:  ‘Memo’.  And then, another light bulb moment:  ‘Memo’ was not Nemo  – it was Dylan’s word for The Little Mermaid. What he wanted was his beloved Ariel. Could he really not have this with him?

Back at the cottage I discovered he didn’t.  As this is probably Dylan’s favourite film (along with Peter Pan and Pinocchio) the fact he didn’t have it made me realise that Dylan does still need support to pack the things he is likely to want.  My technological anxiety meant it took me ages to get Ariel’s Beginnings onto Dylan’s ipad but I finally managed it. This made Dylan so happy 🙂

  1. I’m no longer a carer

It was with a shock I realised that I had lost the rhythm of caring for Dylan; washing and shaving him each day, and supporting him with self-care skills, was something I had got out of the habit of doing. Only eight months since Dylan moved to residential care and already I had forgotten so much.  Instead of doing it automatically, now I had to make a conscious effort to care.

  1. Sugar might not be the problem

Wales March 2016 145‘Shortbread’ Dylan said to me on day four.  Since he has been following a low-sugar diet Dylan bakes with a sugar-substitute so that he can still enjoy sweet-tasting treats. I had neglected to think about Dylan’s supply of sugar-free cake; I didn’t have any xylitol with me and there was no possibility of buying low-sugar products in the places we were visiting. I realised, too late, that I should have made a batch of Dylan’s special shortbread and brought it with us.

As Dylan doesn’t understand why some shortbread is OK for him to eat and some shortbread isn’t,  my refusal to let him have it must have seemed unfathomable. The next day, therefore, I decided I would let Dylan buy some regular shortbread. I prepared myself as best I could for the aggressive behaviour that has been linked with Dylan eating sugar by making sure we were safe home before it was likely to kick in. There was, however, no reaction (except joy).  Next day, curious, I let Dylan have an ice cream (again as we were about to head back to the cottage). Again, nothing.  On our final day: another ice cream. And, again, nothing. Ho hum. What to make of that? Maybe sugar isn’t the problem I thought it was?

  1. Symbols can be reinstated as well as removed

Wales March 2016 185As well as a daily schedule Dylan had a weekly chart which I used to illustrate the number of days we would be staying at the cottage. So that Dylan understood when the holiday would be over I encouraged him to remove a photo of the cottage from the chart each day.  On the final day of our holiday, as I was gathering things for departure, I glanced at Dylan’s schedule: he had stuck all seven photographs of the cottage back up. ‘Very clever, Dylan’, I told him, ‘but I’m afraid we do have to go home’.

As we walked down to the beach to say goodbye I realised Dylan understood this perfectly well. It was good that he was initiating two-way conversation through his schedule, I told myself, even if it was a request to do something over again. I’ll take that as an indication the week was a success: not just symbols reinstated, but Easter restored.

On Not Putting An ‘X’ In A Box: the disenfranchisement of the learning disabled

Today is polling day in the United Kingdom; people over 18 in England, Wales, Scotland and Northern Ireland will be putting an ‘X’ in a box on a ballot paper. Some people will not be able to vote in the Election, however, even if they are registered: Dylan, for example. It’s not that Dylan isn’t entitled to vote – he has the same right to participate as other adults – but entitlement does not necessarily translate to participation.

One Person, One Vote

WP_20150506_21_02_29_ProThree years ago, when Dylan became eligible to vote, I telephoned a Government helpline for advice on elections and the disabled. Dylan, I was told, could have assistance reading the ballot paper but would have to go alone into the voting booth. I explained that Dylan would not be able to do this; he would need support to allocate and insert an ‘X’ on a ballot paper. Dylan, I explained, could choose between concrete objects which are meaningful to him but would not be able to discriminate between candidates on a ballot paper. This does not, of course, disqualify a person from voting; you don’t have to have a learning disability to be unable to distinguish between politicians. As the organisation Every Vote Counts note:

Like anyone else, someone with learning disabilities has the right to choose who they want to vote for by any criteria they like. It is not up to anyone else to judge if reasons for choosing someone are valid or not. Equally, the decision over whether someone votes or not must be theirs and theirs alone. Carers and support workers are not allowed to make decisions on behalf of the person they care for when it comes to voting.

While it is important to support adults with learning disabilities to identify their own voting preferences, those with significant support needs may be disenfranchised by the stipulation that carers cannot vote on their behalf. Certainly this is the situation that emerged in relation to Dylan. If Dylan couldn’t vote in person, it was suggested when I sought advice, I could request a postal or proxy vote for him. As the Government advisor talked me through the requirements, however, it became clear this was no solution.

Whether voting in person, by post or by proxy, a vote must be cast for the candidate that the person with a learning disability chooses. If that person is unable to engage with the political process in order to do so, this clearly raises challenges in terms of exercising the right to vote. Furthermore, Section 29 of the Mental Capacity Act (2005) states that a person can only appoint a proxy if they have the mental capacity to do so. I can’t see how Dylan can use his vote, I said to the woman on the helpline. It was possible, she suggested, that carers in a similar position to me were claiming proxy votes anyway – but it was up to me whether or not to apply for one, she added.

Two People, Two Votes

independent.co.uk2It is not the case, of course, that because Dylan cannot engage with the voting system he does not have political interests. As a vulnerable adult, Dylan has a stake in policy decisions about disability benefits and the organisation of health and social care. More specifically, he has an interest in public transport systems; inclusive sport and leisure facilities; the maintenance of public parks; and the availability of high quality care workers. These are the things which matter to Dylan and which make a difference to the quality of his life. Because Dylan has an interest in the provision of these local services, on the run-up to council elections (the first vote Dylan was eligible to participate in) I thought about applying for a proxy vote for him. I wasn’t comfortable with the implications, however: firstly because I would have to lie about Dylan’s ‘capacity’ in order to be allocated such a vote and secondly because if it were allocated I would have to vote on his behalf.

news.bbc.co.ukIf I were to vote on  Dylan’s behalf, I asked myself, would I cast his vote the same way as my own? Our interests are shared, after all; an inclusive society which protects the vulnerable and prioritises health and social care. Surely this  would mean two identical votes: ‘one person, two votes’? Or would it? What Dylan needs above all is effective local representation: a confident MP who knows the system, has leverage and can advocate for him. We live in Sheffield Hallam, Nick Clegg’s constituency. Although Clegg’s role as Deputy Prime Minister could have reduced his effectiveness as a constituency MP, that has not been my experience in relation to Dylan. Actually, Clegg was rather good when I asked for his help with a funding problem. Of course I cannot be sure that the swift resolution was due to Clegg’s intervention – maybe it was coincidence – but other parents of autistic children and adults in my constituency have reported similar experiences. I have never voted Liberal Democrat myself but if I were to vote on Dylan’s behalf I might. It is thus possible I would argue, when acting on behalf of someone else, to be ‘two people, two votes’.

Two People, One Vote

independent.co.ukFrustrated by Dylan’s situation, on the run up to today’s election I tried a different approach. I have Power of Attorney for Dylan: were there special arrangements for those with such authority, I asked?  As it turns out, there are, though this proved to be no solution either; as with vote by proxy, the person for whom you hold Power of Attorney has to authorise you to vote for them.

Today, therefore, Dylan and I are still ‘two people, one vote’. I assume that other adults whose learning disabilities mean they are not able to appoint a proxy are in a similar position. In addition, adults with learning disabilities who could vote with appropriate support may be unable to access this. Effectively, this disenfranchises adults with learning disabilities.

An entitlement to vote is not sufficient; it must be possible to exercise this right to vote. The nature of Dylan’s disability means that he requires someone to act in his best interests. While a vote on his behalf could be seen to threaten the principle of ‘one person one vote’ this does not, as I have argued here, have to be the case. It should be possible for the interests of adults with severe learning disabilities to be represented within a democratic system. A simple form, for example, could require those casting a vote on behalf of someone for whom they have Power of Attorney to include a brief rationale. Those of us who support adults with learning disabilities are quite used to justifying the decisions we make on their behalf; explaining a vote would not be excessive burden.

Alternatively, the government could just trust us.

*

Reference:
Every Vote Counts provide information and support to people with learning disabilities and their carers.

http://www.everyvotecounts.org.uk/

Images:
The composite images of the three main party leaders are from The Independent and the image of Nick Clegg is via bbc.co.uk

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.

Autism And War: on being anxious and absent

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

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

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

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

The bunker

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

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

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

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

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

Anxiety, adolescence and autism

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

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

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

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

The attic

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

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

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

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

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

Where have all the autistic children gone?

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

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

In a future post I will review the radio production…

Images:

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

Autism And Inclusive Faith: Mozart and poppies

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

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

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

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

Against forgetting

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

The poppy service we attended had been advertised as ‘inclusive’ but it wasn’t a success, at least not for us. In my diary account of the poppy service (which I reproduce below) you will hear the voice of the church leaders and people with learning disabilities as well as my own voice and that of an omniscient narrator.

Poppy (11/xi/13)

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

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

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

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

A reading

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

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

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

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

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

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

Inclusive faith

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

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

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

Mozart

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

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

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

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

That is him! That’s him!

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

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

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

Images:

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

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