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 ūüôā 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 ūüôā 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 ūüė¶¬† 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.

Inclusive Holidays: in praise of groups

Kent August 2012 019

View from the shelter in Margate where TS Eliot is reputed to have written parts of The Waste Land

You’ve got a talent for holidays, a girlfriend observed in response to¬† my account of a trip to Kent with Dylan. I’d organised the visit as part of a ‘Retro England’ theme; ¬†previous holidays had been planned around the themes of islands (Skye and Wight), dis/union (Wales, Scotland, Ireland), mines (Northumberland and Cornwall) and pilgrimage (Canterbury and the Pennine Way).

My holiday themes usually emerge from a consideration of possible locations based on Dylan’s love of steam trains, churches and zoos. Later¬†I weave in connecting narratives¬†from¬†art and literature: in Margate it was Tracey Emin and TS Eliot; on the Yorkshire coast it was sea poems and Grimshaw; in Laugharne it was Dylan Thomas and Lynette Roberts; and on the Isle of Wight there was Tennyson. Finally I add terrain (coastline, caves and mountains) and tandem cycling to our holiday plans.

I enjoy pulling these various threads together in order to identify locations and themes. The purpose of the themes, I think, is that they enable me to engage with an ‘autism-friendly’ holiday rather than feel sore that I can’t travel to exotic locations, go on adventure holidays or take cultural breaks. Instead of a holiday being primarily about Dylan’s needs, a theme offers something for both of us.

Easy pairs

Dylan and my daughter cycling in Norfolk, 2010

Independent holidays are helpful for living with autism; they allow us to go where we wish and to do what we want, when we want. It means we don’t have to compromise by not doing something¬†we like or tolerating something we don’t. But individualised themes are also hard work in that I must¬† research and organise travel, accommodation and activities.

I’ve always been an independent traveller so am used to such planning. Before my children were born I travelled in the Americas and Middle East and in the years before the Berlin Wall came down a girlfriend and I spent long hours visiting the embassies of Eastern Bloc countries while planning a grand tour of Europe. In comparison, organising autism-friendly holidays in the UK is a cinch.

Even within a small family unit, however, compromises must be made. While she was living with us my daughter became increasingly frustrated by our holidays despite my themes. Customising trips for three strong-willed people, I discovered, was challenging. Alone is simple. Pairs is fairly easy. Three gets tricky. Things cannot always be the way we want them when we’re part of a group – unless, of course, we have an ace to play.

The ace

Me declaiming on Tennyson Down, Isle of Wight, 2009

I am guessing my daughter would say autism can be an ace. I would probably agree with her. While our holidays were customised, they were¬†designed around Dylan’s needs first and foremost. In time I came to accept the run of the cards and feel lucky if I managed to play a few of my own –¬†but mothers are tolerant that way. This can be tough¬†on siblings.

While Dylan-friendly holidays might have been hard for my daughter I must admit to having embraced the¬†excuse they offered. As someone who dislikes having to fit into groups (or finds it difficult to fit perhaps) Dylan’s needs provided a useful smokescreen for my own. While accommodating an autistic son can be frustrating, it wasn’t as bad as fitting in with a group of non-autistic strangers. Holidays with Dylan might involve more trains and fewer museums than I would like, but groups demand compromises too and on balance I knew which I preferred. Or at least I thought I did.

The group

Relieved having driven The Quiraing, Isle of Skye, 2009.

In my last post I referred to a short break holiday which Dylan and I took earlier this year (I’ve written more about it here). Unusually, that trip was a group holiday. I booked the trip – a steam train holiday –¬† for Dylan (I was to be in a supporting role only). As well as appealing to Dylan’s interests a¬†ready-made holiday had the advantage of everything having been done for us. The only problem I could foresee was that it had been done for twenty other people as well. But I could, I told myself, cope with the demands of a group for Dylan’s sake – it was only five days and if we hated it then we would at least have tried. In the event, however, the holiday was a success. To my surprise, some of the aspects of the holiday which we most enjoyed arose from the group nature of the trip.

*

Inverness 2014 019

Dylan practising his smile, Inverness 2014

1. Being in a group freed me to focus on Dylan rather than reading maps, planning, driving or organising activities.

2. Members of the group with experience in the care sector or a particular feeling for Dylan gravitated towards us while others wanted to engage us in conversation or simply observe. This was good for raising awareness of autism and advocating in the community.

3. The hotel staff were attentive to Dylan’s individual needs even though we were part of a group. One waitress in particular took special care of him; Agata kept Dylan’s blackcurrant topped up during dinner and made sure he got his meal first. She told me that she was enjoying Dylan being at the hotel; it made the dining room more ‘normal’ (by which she meant more like the world outside the hotel). I was grateful to Agata for modelling inclusive practice to hotel guests; the actions of another member of the community can be more powerful than those of a parent sometimes. The holiday pre-dated Dylan’s sugar-free diet as the photos of Agata’s Special Sundae Kit show.

Inverness 2014 097

Agata’s Special Sundae kit

 

4. In a group others keep an eye out for you. As I am used to travelling alone with Dylan, sometimes without anyone being aware of where we are or what we are doing, this felt strange. As I get older and less able to manage independent travel with Dylan, I might appreciate the safety of numbers.

Inverness 2014 049

Harry Potter Viaduct, Fort William to Mallaig line

5. There are benefits in numbers at any age, however; I’m not sure that I would have recognised Harry Potter’s bridge if I hadn’t heard another member of the group say that is what it was. I learned a lot from others during the holiday and realised that what Dylan learns is usually limited to what I happen to know.¬†

6. In a similar vein, we did things on the holiday which I might not have done without the group; because the itinerary was not mine, it offered opportunities for Dylan and I to engage with different activities. This was good for both of us.

7. Being on a group holiday meant that I came home with photographs of myself and Dylan. Offering to take our photograph was something which people – even those who weren’t sure how to interact with us –¬†felt comfortable with and wanted to do. For me this was a treat as I have few pictures of Dylan and I together. The concept of ‘witness’ is something which interests me; since my daughter moved away it has felt¬†as if¬†Dylan and I live unwitnessed. For once we had some evidence.

There were also things about being part of a group which were tricky:

1. Because the itinerary is fixed there is a lack of flexibility about a group. This was sometimes challenging for Dylan and I who are used to spending shorter or longer periods in locations depending on how interesting we find them.  Dylan always wanted more rather than less time.

2. Because of this we were usually last back for the group rendezvous, something which may have been frustrating for others. I had few strategies, however, for encouraging Dylan; if he was absorbed in a second hand bookshop (as he was on one occasion) then he saw no reason why he should leave until he had finished. In order to be punctual I had to be canny at managing our stops.

3. One timing issue which neither I nor Dylan had any control over was in relation to toilet stops. It takes longer to stand in line for the disabled cubicle (I have written about the challenge of disabled toilets here). Dylan and I rarely had long enough in the time allocated and were often late back to the group. Having said that, the reason for this was obvious and no one ever expressed their irritation (at least not to us).

Inverness 2014 079

View from the window, Eilean Donan Castle

Looking back

Although a group holiday may not seem an obvious choice for someone autistic,  the advantages  outweighed the disadvantages for us. As well as the benefits for Dylan I was able to claim some of my own. I relaxed more than I do when I am in the driving seat. I read more books, rested more and enjoyed more conversation than usual. Providing it has autism-friendly elements, such as structure and focus, a group holiday can be a good option, especially for a lone parent.

Looking back I would say that the key benefit, however, was that Dylan learned something about accommodating others and that others learned how to accommodate him. For me, this is advocacy in action. Inclusion in the community is, ultimately, about the quality of our interaction with others and I enjoyed watching Dylan make his way among the group and establish his own relationships. I was especially touched by the way members of the group responded to Dylan as an individual, as they got to know him, rather than as my disabled son.

An unexpected treat was that Dylan and I were not only welcomed by the group but befriended by a couple, Hazel and Hector, whose company we enjoyed during the holiday and with whom we have stayed in touch.  Dylan, Hector said to me as we said goodbye, is an exceptional young man.  Through some of the troubles of recent months I have run those words through my head, gratefully.

Looking forward

Dylan and I took the holiday directly before the emergence of some behaviours in Dylan which are giving cause for concern (you can read more about this here and here). I don’t think those things are linked but I sometimes make the link when explaining the changes in Dylan to professionals; it provides a useful timeline because I know that when I took Dylan on the holiday last May there hadn’t been any incidents. Given recent developments in Dylan’s behaviour, I can’t imagine embarking on such a holiday now.

october 2014 003That makes me sad, especially as it is the thing which Dylan keeps asking me for. I think the holiday must have been one of his lifetime highlights as he leaves brochures from the holiday company on my desk constantly. He ‘reads’¬†a brochure every morning before leaving for his day centre. Every night he says ‘train’ to me and makes the makaton sign. I say ‘yes, train’ and take him on day trips at weekends – he likes them, but I know there is an edge of disappointment that it is not quite what he had in mind.

This week I found a postcard of Harry Potter’s bridge propped up on the piano. I have no idea where it came from; I don’t remember buying it while we were on holiday though I guess I must have done. Certainly I don’t know where it has been kept since. Dylan clearly knew – clever of him to be more specific about the clues he is leaving for me: not any steam train, mummy: this one. If there are circumstances that can draw the best of us out then maybe a group holiday is Dylan’s;¬† I flicked through the brochure the other day, wondering if I might be able to find something short and safe enough to chance.

He’s Not My Toy Boy: mothers and autistic sons

Inverness 2014 084How long did it take you to learn how to communicate with him? the man asked me. I was a bit stumped: I thought the answer obvious. Perhaps he wanted something more philosophic from me, I reflected. Nonetheless I opted for the simple answer: Well I’m still learning, but all his life I suppose. I could tell I hadn’t answered the question satisfactorily. I watched the man purse his lips; he was thinking about how he could rephrase it so I would understand. I took a sip of my tea and waited. Then I saw a quiet panic in his eyes; he coughed and looked away, took another bite of his scone.

We were staying at the same hotel on a short break holiday so the man had been observing Dylan and I for perhaps 48 hours when, finding ourselves seated at the same table, he had asked his question. Afterwards I pondered it; I could sense there had been a misunderstanding but couldn’t put my finger on quite what. Dylan and I had become friendly with a couple staying at the hotel so, still puzzling over the incident, I decided to share it with Hazel. She looked at me with shrewd eyes, wrinkled her nose and said, matter-of-fact: he probably thinks you’re a couple. My jaw must have dropped. Hazel cracked a grin. Don’t worry, she said: he was probably picking up on your closeness that’s all.

The next time Dylan and I found ourselves seated with the man we made small talk for a while before he cleared his throat and ventured: I have an apology to make. I thought you were Dylan’s sister. That’s why I asked that question the other day. I didn’t realise you were his mum. You don’t look old enough if you don’t mind me saying and so I thought you must be his sister you see that’s all. I could tell his error had been bothering him and he needed reassurance from me that it was OK. But I could see through his story; a sister would also have been learning for a lifetime. I realised, however, that he must have spent time thinking up a plausible explanation for his question which didn’t involve casting me as Mrs Robinson. I thanked him for the compliment and let it drop.

*

Inverness 2014 114Later that weekend I was guiding Dylan across a road in the town when I noticed a woman crossing in the opposite direction give us a filthy look – or, rather, give me a filthy look. I am quite used to members of the public staring at Dylan; usually once they have made sense of the disparity between his appearance and behaviour their attention is warm and positive. Occasionally we encounter somebody unpleasant and then I have to consider whether and how to challenge them (sometimes they get away with it because of the distress such a challenge would cause Dylan). On this occasion, however, it was definitely me not Dylan who was the object of scorn.

Although I didn’t understand why I was a target for it, I recognised the look which the woman on the pedestrian crossing gave me. Her gaze was, I knew, about sexual identity and behaviour. I am used to being judged by other women and think of this as part of the experience of being female. Such surveillance has been well-documented; in my own field of education, research accounts of the ways in which girls ‘police’ girls have significantly enhanced our understanding of their experience of schooling. So while the woman’s behaviour wasn’t unfamiliar to me, it did strike me as odd given my age and the fact I was performing my mother/carer role.

Inverness 2014 118Nonetheless I reacted instinctively: I checked my outfit for errors and accidents. Nothing that I could fathom. As I continued down the street I watched myself passing in shop windows. I couldn’t see anything amiss. I was wearing Doc Marten’s with a simple cotton dress and raincoat. Perhaps my beret was a little jaunty but really, I thought to myself, the idea that she would see me as a sexual threat, predator or outcast was ridiculous. I couldn’t find an explanation for the look the woman had given me but it rankled and left me feeling anxious.

Only after we’d returned home did I realise what had happened that day. She thought Dylan was your Toy Boy, my osteopath said when I mentioned it to her.¬† I think I had known this but not let myself admit it, it seemed so preposterous. Maybe that’s why I shared the incident with her, apropos of nothing; I wanted to check out my hunch with someone whose judgement I trusted. Once I had been given permission to admit the reason, I remembered all the other people who, from the looks I had received, had had exactly the same thought.

*

Inverness 2014 156Since these incidents I have been reflecting on why members of the public might mistake my relationship with Dylan. Clearly it is an error which can only happen once a child has reached a certain age and as Dylan has recently become an adult this is new territory for me. I’m not sure whether it is an issue facing carers more generally; it’s not something I’ve heard mentioned by any I must admit. It occurs to me, however, that the error probably requires a particular set of factors to be in alignment.

Although mistaking a parent-child relationship can happen only during adult years there is probably a fairly small window for the error. The mistake, I suspect, is based on Dylan being at his physical prime and me being just beyond child-bearing years; assumptions are made by society about what is considered appropriate sexual behaviour for both those categories (non-disabled people in cross-generation relationships will be familiar with those). I am guessing that the public might not mistake Dylan’s carer as his partner when he is middle aged, and his carers are significantly younger than he is, or when I am significantly older than I am now.

As well as being age-related the erroneous assumption is probably fuelled by a parent supporting the child alone and by parent and child not being same sex. There has to be something more than this though doesn’t there? Lots of mid-years mothers and fathers walk down the street with their adolescent sons and daughters without the world assuming them toy boys, sugar daddies and cradle snatchers. The difference, then, must hinge on behaviour as well as appearance.

*

Because Dylan is vulnerable in the community I need to support him physically when we are out and about. Dylan lacks road sense so must be guided across roads and supported while waiting to cross. Because walking through public space is difficult for him, Dylan seeks physical reassurance from carers for comfort as well as guidance. When Dylan was younger I would hold his hand. Recently I have encouraged Dylan to link arms instead as this feels more adult and avoids the childlike or romantic associations of hand-holding. Dylan still sometimes reaches for my hand, however, when we are out walking and likes to link arms even away from traffic.

Dylan not only enjoys this physical contact but he uses it for purposes of communication. He squeezes my palm in different ways, for example, to initiate ‘conversation’, to ask if everything is alright or to say ‘hurry up’ or ‘I don’t like this’. He also taps me to communicate (you can read more about this here) and uses a variety of paradiddles, hugs and arm bends. While I have to be careful of Dylan’s physical strength, particularly when he is distressed, his use of touch to express feelings is a rich and valuable part of our relationship. It is this physical closeness, I suspect, which an unsuspecting member of the public could misread.

*

Dylan and I were once misread by a member of the public in a way which seemed inconceivable. One day, when Dylan was 15 or 16, we caught the eye of a senior citizen walking slowly, on two sticks, along the road where we live. Dylan and I were skipping hand-in-hand through a private alley which leads to the road (Dylan loves to skip so we do this sometimes in quiet places). As we approached, the woman lifted her eyes from the pavement, stared at us as if puzzled, then declared: Twins!

There are 33 years between Dylan and myself. As well as being a different sex, our eye and hair colour are different. If being mistaken for Dylan’s partner or sister is preposterous, being called his twin challenges identity at a whole new level. At the time I dismissed the incident as an aberration of judgement due to the woman’s age. I realised afterwards, however, that this was patronising; she had clearly seen something to cause her to think us twins. People have sometimes commented to me that although superficially Dylan and I look physically different, the link between us is clear if you look more deeply. The elderly woman had, I told myself, seen beyond the obvious; it was this, combined with our childlike behaviour in the alley, which had confused her.

Recently I have been working on a manuscript of love poems. While many writers have assembled such collections (including the poet whose name I share) my focus has been slightly different in that the poems are concerned with non-sexual love. What I wanted to explore, through these poems, was the nature of intimacy: as well as poems about a mother and child there are pieces about relationships between friends, colleagues, and a trapeze girl and her catcher. A couple of the poems concern the particular intimacy which being the carer of an adult child involves; perhaps this is what the woman in the street detected when she imagined us twins.

*

The incidents recounted here illustrate three mistaken reactions to the same relationship, each with different emotional impact and implications. While acts of public condemnation, such as filthy looks in the street, are hard to receive and difficult to counteract, the meeting with the man in the hotel offered an opportunity to gently challenge expectations. The elderly woman’s mistake may, at first glance, seem the most significant but in perceiving physical contact as denoting intimacy rather than sex she was pointing a wise finger.

What the incidents also illustrate, perhaps, is how constrained a part of British culture touch is. Physical contact in public is assumed to indicate childhood or sexual love; we accept hand-holding between parents and children but in adulthood touch is something which is reserved for lovers. Carers and disabled people challenge attitudes and assumptions every time we access the community; sometimes change is light and easy but at other times it needs a sledgehammer. If I were the sort of person who wore slogan T-Shirts I would have one made for the women on pedestrian crossings : He’s Not My Toy Boy, He’s My Son.

 

Images:

The first four photographs were taken by Hazel and others (apart from the selfie through a mirror) during the holiday referred to in this post. They were taken on the Isle of Skye, in Aviemore and at the Botanical Gardens in Inverness. The photographs of Dylan and I holding hands when he was younger were also taken on Skye (by my daughter in 2009). The final photograph was taken by my daughter in Ventnor on the Isle of Wight in 2009.

Dylan’s Life In Song: music and autism

music 024One of the things that is striking about Dylan’s school reports is their lack of agreement about whether or not he likes music: Dylan loves music; assembly causes Dylan distress; Dylan responds well to music; Dylan is not comfortable in music sessions; Dylan enjoys listening to CDs; Dylan covers his ears.¬†

In this post I speculate on the reasons for Dylan’s apparently contradictory response to music. Inspired by my participation in a project run by Christy at runningonsober, I include songs selected by Dylan. Christy invited fellow bloggers to tell the story of their lives in ‘six songs and a bonus’ and last week it was my turn (you can listen to my seven songs here). I am including Dylan’s songs in this post not in order to tell his life story but to illustrate his relationship with music.

Auditory hypersensitivity

In a previous post I have written about auditory sensitivity in autism and some of the therapeutic interventions which can be made. Dylan undoubtedly experiences auditory discomfort; he often clamps his right arm over his head, his upper arm held tightly against his right ear and a finger pushed into his left ear. This is canny: as Dylan is left handed it leaves his strong arm free to pull whoever is supporting him out of the situation causing him distress.

As well as being disturbed by a range of environmental sounds (children crying, dogs barking, motorbikes) it is possible that Dylan hears frequencies most of us cannot; the idea that Dylan hears in ultrasound underpins my poem sequence The Bat Detector, for example. I suspect that ‘deep’ background noise (such as heating systems, underground streams and sap through trees) is also audible to Dylan. Other autistic people have reported similar disturbance; some have posted clips on youtube which simulate this experience. Watching these videos is an uncomfortable experience and has helped me to comprehend just how powerful Dylan’s auditory disturbance may be. This hypersensitivity may, I suspect, explain both the pleasure and the pain which Dylan can find in music.

Music as discomfort: environmental noise

Brittany 13 175It is possible, I think, that this backdrop of environmental noise reduces the clarity of music in the same way that it interferes with Dylan’s processing of spoken language. Dylan may find music as uncomfortable as language in certain contexts (busy and open spaces, such as assembly halls, for example). Conversely, some environments may be particularly comfortable places for processing music. I’ve noticed, for example, that Dylan enjoys listening to music in the car. While some songs still cause him discomfort, the interior of a car seems to be good for listening. This also seems to be a useful space for Dylan to process language; he often extracts meaning from language more easily in the car. Perhaps the very features of private transport we complain about (sealed and isolated from others) are helpful to Dylan.

music 029The ultimate privacy in listening is via headphones. In a previous post I’ve written about the use of headphones to block or clear out background noise, for example via auditory integration therapy. Until he was a teenager the only music which Dylan would listen to (with one exception which I’ll return to) was nursery rhyme audio tapes. When I persuaded him to accept a nursery rhyme CD my daughter offered to put it on an i-pod shuffle for Dylan. This created challenge as well as possibility. Although we could now use music to lessen Dylan’s discomfort in the community, if we didn’t get the choice of music right it would have the opposite effect: delivering music which Dylan found painful directly into his ears was far worse than an uncomfortable environment.

music 014Don’t put anything on there your brother doesn’t like or know already, I instructed my daughter. I would discover her sneaky inclusions on the ipod from time to time as Dylan pulled the ear buds out and let me listen in (usually to a french pop song). One of the introductions my daughter made was crucial, however, in moving Dylan away from nursery rhymes; she had noticed his interest in one of my CDs and put this onto his shuffle. When Dylan first started to bring me the CD¬† (a collaboration between Elvis Costello and Anne Sofie Von Otter) I thought he was anticipating my behaviour rather than expressing a preference of his own. Later I would realise that it wasn’t that Dylan thought I wanted to listen to it but that he did. Dylan now has this album on CD, i-pod shuffle and i-pad. Is it possible, through this album, to identify the features of music which bring Dylan particular joy?

Music as joy: pitch and key

music 031Part of Dylan’s hypersensitive hearing involves a discriminating ear; I believe he has perfect pitch. Dylan cannot bear the sound of school and amateur choirs. He finds music played through poor equipment painful. He cannot endure piped music through public address systems. This may be partly due to the background noise of electronic equipment but I have seen Dylan react with equal discomfort to poorly pitched acoustic music and a capella singing. Many of Dylan’s musical choices may therefore be determined by the quality of sound; I’m sure the fact Von Otter is classically trained has a bearing on Dylan’s experience.

music 027It isn’t just about pitch though; Dylan may also have particular key preferences. When Dylan was very young¬† a musicologist, having observed Dylan’s engagement with music one evening declared: I think it’s Eb and Bb he likes – the language of the blues. Over the years I’ve seen this hunch borne out. Although at home Dylan only listened to nursery rhymes, at primary school he had a jazz blues tape which one of the teachers made for him and which Dylan listened to if he became anxious during the school day.¬†Among Dylan’s favourite CDs today (though not making it into his final seven) are Bettye LaVette, Nina Simone, Etta James and Ella Fitzgerald.

Feeling the music

There have been a number of cases over the years of autistic children and adults with extraordinary musical talent. This sits quite comfortably in my mind with the gift for number which some autistic people demonstrate; music and mathematics share the same underlying structures. For these purposes, however, I want to focus on people such as Dylan who don’t show any obvious musical gift; while I’ve seen Dylan pick up a pair of drumsticks and keep effortless time, he doesn’t play an instrument. At home he lets me play piano and recorder but draws the line at harmonica; his arm clamps quickly across his head if I so much as pick it up.

music 012Perhaps for this reason it’s taken a while for Dylan to tolerate my Bob Dylan collection. It is only tolerate though: I bought Dylan a copy of the Essential Bob Dylan last Christmas but it’s never been out of its case. Could this be about pitch and key? Is Dylan less enamoured of Bob than Nina because of the way they sound? I don’t think I have encouraged one rather than the other; I play them both equally and with equal joy. I could draw this distinction though; I don’t dance to Bob Dylan.

Over the last year my Dylan has discovered that he loves to dance. Every evening he chooses some music then holds his arms out to me. When I say ‘dance’ I should qualify this: it is spinning rather than dancing. Dylan takes you by the arms and with his eyes closed he spins clockwise as fast as you are prepared to accompany him. I have never known him become dizzy; he would spin all night if I let him. Every trick I try I cannot last more than one song. It ends with me clutching the table: I’m sorry Dylan mummy’s dizzy. This, then, is music as sensory pleasure: choose a singer with perfect pitch; give her the Ebs and Bbs; lay down a rhythm; and spin, spin, spin.

music 011One of the distinctive features of jazz and blues is syncopation. Syncopation refers to the interruption of expected rhythmic patterns; instead of the beat our ear expects (based on the rhythm already established within a piece) we encounter variety. Miles Hoffman explains this as “a disturbance or interruption of the regular flow of rhythm” through a “placement of rhythmic stresses or accents where they wouldn’t normally occur.” (Hoffman, 1997). Given that autistic people are believed to favour the expected over the unexpected, an enjoyment of syncopation may appear a surprising feature of Dylan’s engagement with the language of music.

A research project exploring the neurological links between language and music has emphasised the parallel structures of conversation and jazz (LaFrance, 2014). Charles Limb, a musician and medic at John Hopkins, mapped the brains of jazz musicians and found that areas of the brain linked to meaning ‘shut down’ during improvisational jazz sessions. Jazz, Limb suggests, is based on structure and syntax rather than semantics: “It doesn’t have propositional elements or specificity of meaning in the same way a word does”. This, Limb argues, is more complicated than language:

If the brain evolved for the purpose of speech, it’s odd that it evolved to a capacity way beyond speech…I have reason to suspect that the auditory brain may have been designed to hear music and speech is a happy byproduct.

Music and feelings

music 015While Dylan’s interest in jazz rhythms may be underpinned by structure and syntax, his song choices also suggest a role for semantics.¬† As well as the technical issues of acoustics, rhythm, pitch and key, Dylan’s engagement with music appears to be emotional. Just as you and I might associate a particular song with happy or sad times, so Dylan seems to have mapped some of his strongest memories on to music. Only recently have I realised that his refusal to listen to this U2 CD is probably because my ex-husband and I were listening to it at a crucial time in the breakdown of our marriage. Sometimes I cannot work out what the associated memory might be but I’m sure it is there; a Tears for Fears cover we are not able to listen to on a Patti Smith album for example.

Dylan’s songs

music 009When Dylan started taking an interest in music I decided to help him build his own music collection. He only ever buys duplicate copies of my CDs, however. To try and extend Dylan I have bought him different CDs by artists he already knows but if he doesn’t recognise the covers he won’t play them. For Dylan, visual information is an important part of his engagement with music.

This means that Dylan’s seven songs are derived from my collection; his individual preferences are, nonetheless, apparent from the music he chooses. Some of the songs have particularly happy emotional associations for him I think; I’m not sure why he likes others but it could be the rhythm, key or quality of sound. I say a few words about what I think may inform Dylan’s selections. To support Dylan to make his choices I spread a long list of his favourite CDs on the floor (prompting Dylan to add to and subtract from these).

music 008

I then invited him to choose one CD at a time until we had seven. I made a visual group of the seven and gave Dylan an opportunity to make changes (he made one: Edie Brickell and New Bohemians lost out to a compilation blues CD). Here is the final result: Dylan’s seven songs. Enjoy ūüôā

music 020

Song # 1: Someone Like You by Adele

I would have said Adele 21 was Dylan’s favourite CD so I think this is a secure top spot placing. I suspect that Dylan already knew the album before I acquired it; perhaps he had heard it on the school bus. Dylan particularly likes dancing to Adele. I think he likes all the tracks on the album; I’ve hazarded on this one.

Song # 2: Like an Angel by Anne Sofie Von Otter

Costello and Von Otter’s For The Stars was the first CD Dylan took an interest in. I think he likes the quality of Von Otter’s voice. Like an Angel is a trance-inducing song for Dylan; he can seem close to ecstasy when listening to it.

Song # 3 Shake it Out by Florence and the Machine

Mashee Dylan says to me, Mashee. That’s also what he calls treadmills and cross-trainers; I sometimes wonder what sense Dylan makes of a CD having the same name as the kit in the gym. Perhaps it amuses him. I am a bit surprised Dylan put Florence in 3rd place but I can see why he’d like her voice and the use of orchestral music.

Song # 4: Fields of Gold by Sting

My ex-husband was a fan of Sting and used to play this album a lot. I have a memory of him dancing to it with Dylan in his arms. I bought this CD for myself quite recently after a song on the radio jogged my memory. I was surprised by the way Dylan immediately claimed it and bought a duplicate copy plus a copy for his i-pad. I think he may have a deep memory of dancing with the man he knew for years as his dad.

Song # 5 Nobody’s Baby Now by Nick Cave

Dylan pulled Let Love In off my shelves recently and wanted me to play it. Since then he has been very attached to this album. I’m not sure why but, again, I wonder whether it is a deep memory of my ex-husband who used to play this album. Dylan was insistent that this was the youtube clip he wanted me to use.

Song #6 Night and Day by Billie Holiday

Dylan included a compilation CD of women blues singers in his top seven: lady sings the blues night & day. I’m not sure if he has a favourite song from the collection but I think he’s happy with this one; when I set the clip playing he came running to look. Dylan likes me to play this compilation CD. I think he associates it with good times and dancing.

Song # 7 Hide and Seek by Imogen Heap

I don’t know why Dylan is so attached to Imogen Heap’s album Speak for Yourself. I bought the CD in 2012 after this song was played at the funeral of a friend. It has no connection for Dylan yet this is the song he seems to particularly like. My ex-stepdaughter is called Imogen and I have sometimes wondered if this might explain Dylan’s attachment to the CD; he certainly likes me naming it. Imogen Heap, I say, it’s Imogen Heap. Leep he laughs, Leep.

References:

  • Adrienne LaFrance (2014) ‘How Brains See Music As Language’¬† in The Atlantic.
  • Miles Hoffman (1997) Syncopation.

Thanks to Christy at Running on Sober for sharing Dylan’s playlist on her blog: here’s a link.¬† I’m delighted that Dylan won a prize in a competition thanks to the lovely comments left by visitors to Christy’s site ūüôā

Hot Air Hand Dryers And Radar Keys: the challenge of public toilets

001I remember thinking when Dylan was born that having a male child might present some practical issues for a single mother. I couldn’t have guessed how significant these would turn out to be; having a disabled male child, especially one with continuing personal care needs, raises a number of challenges, one of which is public toileting.

Because of Dylan’s lack of¬† awareness of the social rules governing public space he can’t go alone to the toilet. Dylan would be far too vulnerable; he is a sociable young man who would be likely to approach a stranger to shake their hand or squeeze them by the arm. I have seen men retreat in¬†surprise from Dylan doing this in the street; imagine the reaction of a man approached this way in a public toilet.

As the urinal is unfamiliar to a young man brought up in a female household, in a public toilet facility Dylan always heads for a cubicle. Although this is useful in that it provides privacy, Dylan has no awareness of what is an appropriate amount of time to spend in the cubicle; I have frequently had to climb over or squeeze under bolted toilet doors to retrieve him. And, once out, Dylan always has to be prompted to wash hands. This, I think, is the result of years of extreme anxiety about hot air hand dryers.¬† I used to dread someone using the hand dyer while we were in a cubicle and have shouted through the door at members of the public using the sink:¬† please don’t start drying your hands just yet. Dylan copes much better with hot air dryers now, though he still washes one hand at a time with the free arm clamped across his head, covering his ears.

Members of the public are generally very understanding of the way Dylan interacts with public space but toilets are a particular space and are often the area where people can feel uncomfortable or threatened. While for the public this private space is also generally a silent space, for Dylan it is one of the places he is most vocal. Dylan has his own version of ‘singing’ which he does with gusto and at high volume, punctuated with laughter and shouting, while in the toilet. For a young man who doesn’t speak and isn’t very verbal, I find it interesting that the place he feels most free and able to vocalise is a place where many of us feel most vulnerable.

The ‘challenges’ I’m raising here are around social rules rather than personal hygiene, about which Dylan is fastidious. If someone had told me when I was struggling to get Dylan out of nappies when he was five years old, and facing some pretty challenging situations, that we would be where we are today, I would have been astonished.¬† Many of the issues I identify here seem to involve Dylan’s sensory experience which makes me wonder whether the difficulties I experienced while Dylan was toilet training were due to sensory discomfort. Perhaps for some autistic toddlers wearing a nappy is a particularly unpleasant experience.¬† With hindsight, if I had¬† my time again I would approach toilet training an autistic child differently and with this in mind.

Today Dylan not only manages himself with dignity, he is gentlemanly in his consideration of me. For just as I can’t let Dylan use the male toilet alone, so I cannot leave him in the street to wait for me to use the Ladies loo;¬† all of my toilet trips when out in the community are therefore shared experiences.¬† For these, I have my radar key to thank; in the space and privacy of the disabled toilet Dylan turns his back to me, lowers his eyes, and¬† covers his ears.