Emotes

Dylan turned 23 this month. To celebrate his birthday I took him to Chester for a short break. A trip to the zoo and an overnight stay in a ‘moon hotel’ was followed by a day walking the city walls and looking at the river, canals and cathedral. These are things which Dylan loves and we had a marvellous time.

This year I gave Dylan a remote-controlled car for his birthday. He has taken an interest in cars recently, pointing them out to me and saying ‘car’. His particular interest seems to be black taxi cabs but I couldn’t find one so he has a red saloon instead. Still, its headlights and rear lights flash and it moves left and right as well as forwards and back. It’s quite exciting but a bit tricky to manoeuvre so I’m not sure it will work for Dylan who could find it frustrating  (or pointless).

I didn’t have a particular gift in mind for Dylan this year so I looked around a ‘gifts and novelties’ section of a department store for inspiration.  As well as the car, I picked out a ‘Gentleman’s Hardware’ picnic box which Dylan seems to be enjoying. He often takes a packed lunch on his trips out so this is something he’ll get lots of use out of. While I was in the store, my attention was also caught by a box of ‘Emotes’…

Because Dylan uses symbols to communicate I’m always on the look out for visual resources and the Emotes looked interesting. Essentially, the product is an emoticon glossary, presented as a card index: one side of the card has a picture of an emoticon and the reverse side carries a definition and explanation of use. A fun present for a social media junkie. I flicked through the cards in the box, embarrassed (by how much I had misunderstood) and  amused (pile of poo? really?).

I don’t text very much or use social media language. I understand happy and sad faces, and I include them in messages sometimes,  but that’s about my limit. I’m too scared of making a faux pas after spending years thinking that ‘lol’ meant ‘lots of love’ and wondering why people I hardly knew kept sending it to me. Now, I try and avoid inserting funny faces into my emails and texts.

But while I could clearly learn things from the cards, it wasn’t really myself I was thinking about. Could the emotes help Dylan to understand his emotional life and communicate his feelings, I wondered? Some of the Emotes are the same as makaton signs so would be reassuringly familiar, but there were symbols that might develop nuance and range. Here is worried for example, an emotion which I think Dylan experiences quite frequently:

And this is confused:

Although I spend most of my time encouraging Dylan to find his voice, there are times when this might be useful:

And there’s even a blank to create your own emote. I like the idea of leaving it empty, actually; having an option for not feeling anything strikes me as pretty useful. While the box includes some inappropriate cards (a gun), others would almost certainly amuse (that pile of poo)  or excite Dylan (piece of cake). The set cost £12.00.  I decided to buy one – not to gift wrap  (Dylan would probably think that a disappointing present) but to introduce as part of the on-going attempt to support Dylan’s communication.

I don’t think that, so far, they’ve been of much interest to Dylan.  When I showed them to him on his birthday he had a giggle at the pile of poo and put the picture of a piece of cake in the plastic stand. Fair enough – this was the bit of his day he was most looking forward to.  Dylan also enjoyed the ‘fist bump’ card and quickly grasped this as a greeting or alternative for ‘good job’. Two weeks later, Dylan is still fist-bumping me. The cake is still in the stand, however, and Dylan shows no interest in changing it or in looking at the other symbols. ‘Never say never’, is my mantra, however;  Dylan may pick them up one day.

I do think Emotes are a potentially useful resource for people (children or adults) who struggle to understand socio-emotional communication. And you don’t need to have an autism diagnosis to be in that category lol 🙂

Kicking And Screaming To The Moon

untitledIt’s not Dylan who is kicking and screaming, this time, but me:  all the way into the 21st century. As you might have gathered I am not keen on the digital world.  While colleagues book out laptops for seminars I am still using the laminator and asking the technician for string and stickle bricks.  ‘When you answer the item on your module evaluation questionnaire about my use of technology’, I tell students, ‘please remember that twisting cotton into a ball of twine is technology – it’s just been around a bit longer’.

People who know me express surprise that I have a blog: ‘It’s got pictures in it as well’, someone said to me the other day. But if I can see a purpose to technology I will apply myself doggedly until I have figured it out; Living With Autism arose from a determination to share my frustration at Dylan’s poor experience of transition to adult services rather than the desire to blog.

Purpose. Function. Appropriateness. These are terms I use with students when we discuss the use of technology to support learning in schools.  I apply the same principles to my own use, I suppose, in that I take no pleasure from technology in itself but only in the affordances it offers.  I resist adopting gadgets which I can’t see a role for in my life or from which I think I will derive no benefit. Smart TV, smarter phone, satellite and cable, iPad, iPod, dongles of this and bundles of the other – these might represent wonderful opportunities for others but, I have repeatedly claimed, they are not for me.

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001I might have a heart of string and a head that thinks in pen and ink but there’s nothing like parenting to challenge me – and being the peripatetic mother of an autistic adult, I am discovering, can lead to some unexpected places.

Last week, for example, I bought an iPad. Nothing extraordinary about that but for my steadfast resistance, over the years, to the idea of a tablet computer. So when I announced that I was going to buy one in my lunch break my colleague’s eye-rings widened in disbelief. ‘Have you thought about a mini?’ she asked once she realised I was serious. It would be wasted on me, I told her.

I only wanted an iPad so I could keep in touch with Dylan; as I have noted in previous posts I have found it difficult not to have daily contact since he moved to residential care. Because Dylan is non-verbal I am reliant on staff for information about him during the week. The telephone, however, is not a mode of communication I’m comfortable with and the evening phone call is often a source of anxiety. So when a member of staff mentioned, recently, that some non-speaking residents keep in touch with their family through Facetime my interest was piqued; I had finally been offered a reason for technology I couldn’t resist.

Although I have never owned an iPad myself I bought one for Dylan when he left school in 2013. He has used it mostly for music and film but recently has been developing new skills during ‘iPad time’ which is scheduled on his programme each week. Apparently this has been going well, with Dylan showing an interest in playing games with staff.  It would be great if Dylan could add Facetime to his use of the iPad I told my colleague. ‘You might find your use increases too’, she said as I headed out of the office: ‘If I were you I’d definitely think about getting yourself a mini’.

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WP_20160424_002I did buy one, though not for me. The extra capacity and portability would be ideal for Dylan I decided: I could have his old iPad. So yesterday I rigged up a maybe-system for transferring Dylan’s content to the new iPad mini. My main worry was accidentally deleting the copy of Ariel’s Beginnings I had gone to such lengths to download at Easter. I was also unsure when and how to introduce the idea of a new tablet to Dylan; in the back of my head was the possibility I wouldn’t manage the transfer and would have to have the mini myself instead. So I was hedging my bets a bit; not really telling Dylan what I was doing.

Sunday morning. Dylan hovering. I had promised him a ‘picnic and an explore’ up the next stretch of a river bank we had discovered the previous weekend. I watched with  a sinking feeling as the predicted time for the sync extended itself: 15, 17, 18, 20 minutes the dialog box read.  Dylan was pointing impatiently to the screen. He wanted me to do something but I wasn’t sure what. He gestured to the mouse. To the scroll bar. To the little cross in the corner. ‘We have to wait for it’, I said: ‘Let’s leave it and go downstairs’.

One the final day of our recent Easter holiday Dylan had tried to use his schedule to tell me what he wanted rather than what the schedule told him we were doing. Now Dylan took this a step further: he fetched some brochures and showed me a picture of a hotel bed. Then he pointed to the programme for his week which I had shared with him earlier that morning. ‘Moon’, he said.  He pointed at my computer again and pushed the mouse toward me. ‘Moon’, he repeated.  The dialog box read 5 minutes. This would be five long minutes if we stayed where we were, I thought to myself.  Dylan looked at me and pointed at his programme: ‘Moon bed’. Ah. So that was it!

Dylan had remembered a conversation from the previous week when I promised to take him to a Premier Inn. He’s interested in this particular hotel chain because of the moon logo; every time we drive past one of their hotels Dylan cranes his neck and tells me ‘moon’ or ‘bed’.  Our recent holiday, I assume, has triggered Dylan’s memory of overnight stays in the past and so last week I promised we could do this again.  ‘Soon’, I had said. So when the iPad had finished its sync I decided to search for a moon hotel. It was like magic, I thought to myself as I checked the content, how everything seemed to have restored itself. ‘Would you like to take this special iPad with you to the moon Dylan?’ I said.

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Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

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Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

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References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury

Snowdrops, Updates, Opportunities

It’s hard to believe that it’s snowdrop time already; here is Dylan enjoying a woodland walk at Hodsock Priory in the blue yesterday.

hodsock 2016 001

As we were leaving there was an ‘incident’. These are so rare now I was caught off-guard and momentarily thrown back in time to the troubled days I used to puzzle and worry over on this blog. They feel a long time ago, in some ways, but also (literally and metaphorically) like yesterday.

As ever, I’m keeping track of Dylan’s progress by the seasons. When I made my last post, on the 100th day of his transition, we were looking forward to Christmas. With the arrival of the snowdrops I can report that Dylan continues to do well. He seems settled at his new home and to enjoy the rhythm of his days. Dylan has a key worker now and I’m enjoying watching their relationship develop and make a positive difference to Dylan’s life.

Dylan still comes home at weekends which gives us chance to continue the activities, such as walks and visits to the cinema, we both enjoy. In the last couple of weeks, however, I’ve reduced my mid-week visits – a sign of the extent to which Dylan is comfortable and increasingly happy to live his life away from me. Besides, Wednesday night is soft play or Soul Lounge – much more exciting than pizza with mooey 🙂

I haven’t yet claimed the space for myself I said I was looking forward to in my last post; I have been so busy at work, I’m afraid, the poems are still unsprung. I tell myself a little longer under the good earth will do no harm and that, like the snowdrops, they will come when they are ready.

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This week I’m looking forward to an opportunity that has arisen as a direct consequence of my keeping this blog. I have been invited to speak at the professional conference of the National Autistic Society which takes place  1st-2nd March at the Telford International Centre. The theme this year is ‘Exploring New Thinking And Approaches’ and I’ve been asked to talk about supporting transition to adulthood in the context of someone who is ‘non-verbal’ and has learning difficulties. I’m going to use ‘scenes’ from Dylan’s journey to illustrate some of the ways in which I was able to ‘hear’ (and sometimes to ‘mishear’) his voice. My slot is on the Wednesday but I’ve managed to re-arrange my teaching so I can attend  both days; if you’re at the conference, do come and say hello.

Although I’m used to delivering presentations it will be the first time I’ve given a talk based on my experience as a mother. I’m a little nervous about my material but hopefully there will be something of interest in our ‘single story’. My main aim is to find a way of letting  Dylan ‘speak’ through me so that his voice can be heard. If I can manage that, I tell myself, it will be enough.

Here’s a link to the conference: http://www.autism.org.uk/professional2016

 

 

Learning Through Dialogue: reflections on blogging (ii)

Photo075This is the second of a two-part post reflecting on some of the things I have learned through Living with Autism. In part one I suggested that the blog has been invaluable in providing me with a space to reflect on key issues in relation to Dylan’s care; it has encouraged me to think more deeply about a range of topics and to pay closer attention to Dylan than I might otherwise have done.

For one post, for example, I kept a log of Dylan’s vocalisations in order to illustrate his engagement with speech and language, something I doubt would have occurred to me without the blog. I learned a lot from this activity, and from other observations made to inform blog posts, and Dylan and I have benefitted  from this process. I also noted, in my last post, that the blog has been helpful in the sense that writing can be transformative; while drafting posts I found new ways of thinking about familiar issues and emerged from the process of writing having learned something about myself and Dylan.

This growth and development does not take place in the writing alone however; it is through dialogue with others that some of the most significant and creative learning ocurred. One post, for example, reports what happened when I tried an approach with Dylan suggested in a comment on my blog. I have previously noted (in a post about autism and divorce) that what single parents of autistic children lack is space and dialogue; these two resources, I suggested, are invaluable if carers are to feel nourished and supported. As well as providing me with a sense of space, Living with Autism has been crucial in providing such dialogue. I am immensely grateful for the ideas, musings, suggestions, examples and encouragement received from others, and for the friendship and support Dylan and I have found here. The rest of this post celebrates the reader’s role by sharing what I have learned from (and about) an audience.

Being careful: reflecting through Chimamanda

untitledI’ve just finished reading Chimamanda Ngozi Adichie’s superb novel Americanah (Fourth Estate, 2014). The main character, Ifemelu, is a blogger; when she moves to the US from Nigeria she sets up a WordPress site called Raceteenth or Curious Observations by a Non-American Black on the Subject of Blackness in America (she later changes the tag line to Various Observations About American Blacks (Those Formerly Known as Negroes) by a Non-American Black). Later, returning to live in Nigeria, she sets up a new blog, The Small Redemptions of Lagos.

Ifemelu’s reflections on blogging punctuate Adichie’s novel and extracts from it are used both to carry the plot and to illustrate key themes. As well as being an inspired narrative device the material makes fascinating reading for anyone who blogs (especially chapter 33 which is devoted to the subject). We hear, for example, that Ifemelu checked her blog ‘like a child eagerly tearing open a present she is not sure she wants’ and that she received mail from people ‘asking for a drink, telling her she was a racist, and giving her ideas to blog about. ‘ (p. 303) When Ifemelu’s blog starts to generate interest among educators and business leaders and she is invited to speak at diversity workshops, to take phone calls she: ‘wore her most serious pair of trousers, her most muted shade of lipstick, and she spoke sitting upright at her desk, legs crossed, her voice measured and sure’. (p. 304)

Yet, we are told, ‘a part of her always stiffened with apprehension’. Initially this is because Ifemelu fears she will be exposed as a fraud – that she is no expert on ‘race’ and has no particular credentials to speak publically on the topic. She prepares carefully for her first engagement and feels deflated when her talk receives a lukewarm reception. That evening she received an email:

YOUR TALK WAS BALONEY. YOU ARE A RACIST. YOU SHOULD BE GRATEFUL WE LET YOU INTO THIS COUNTRY. (p.305)

untitledThe email is a revelation to Ifemelu who subsequently realises that the people who extend invitations to her to speak at events want to ‘feel good about themselves’ rather than to be inspired to enact change: ‘They did not want the content of her ideas; they merely wanted the gesture of her presence’. These people, Ifemelu came to understand, were not the same people as those who read her blog. These different audiences were open to different conversations. So, for example, Ifemelu tells her all-white audience at a diversity talk ‘America has made great progress for which we should be very proud’ whereas on her blog she writes: Racism should never have happened and so you don’t get a cookie for reducing it. (p. 305).

Ifemelu’s blog becomes so successful that in time she is able to hire an assistant to delete inappropriate comments on her blog ‘almost as soon as they were posted’. Living with Autism clearly does not occupy the same space as the fictitious Observations by a Non-American Black. While Ifemelu’s blog attracts thousands of readers and comments, this one is much more modest of aim and scope. I’m interested, however, in Adichie’s observations about blogging and particularly in the possibility that a blog audience may be more open to radical thinking than a non-virtual audience.

At the end of my last post I referred to an observation, by one of my colleagues, that the tone of my posts was ‘careful’. I suspect this was partly from my concern to write clearly but mostly because I was anxious. ‘Autism’ is a slippery subject. Nothing about it is generalisable. Everything can be qualified. The concept is contested. The language is different (and differently contested) in different countries and contexts. The ethical issues are complex, particularly when they involve individuals with learning disability and without speech. There are competing philosophical models and oppositional positions on policy and provision. The concerns of autistic people, professionals and parents are different. And (as with everything) there are agendas, trends, fads, heroes and villains. Like ‘race’ it is a topic which challenges and which demands our emotional as well as intellectual engagement.

When I started blogging I realised (from reading other blogs) that there is as much conflict as harmony in the online community and I trod carefully. As well as wanting to respect divergent views, and to embrace professional and personal perspectives, it was important to me that Living with Autism created a space which was accessible to people without a connection to autism. Juggling these different constituencies is perhaps one explanation for the caution in my voice.

untitledIn Adichie’s novel Ifemelu occupies an increasingly courageous space as she becomes more comfortable with her role as a ‘provocative race blogger’. While Living with Autism may not have courted this, I’d like to think that at least some of my posts challenge established ideas. Certainly, as time went on, I felt braver about discussing sensitive topics; recently, for example, I published a post on carer suicide/killing, a subject which has provoked fierce debate and which I would once have been too anxious to tackle. In the event I need not have feared; the ‘careful’ voice that my colleague identified has been equally true of the dialogue on Living with Autism. I’m pleased that the comments on this site, while not always in agreement, have been respectful and non-inflammatory; for this, Dear Reader, I thank you.

Namastē and Olá

wikiindiaBecause Living with Autism has not been as ambitious in scope I have not had to deal with the fear triggered in Ifemelu by the readers of Observations by a Non-American Black:

The blog had unveiled itself and shed its milk teeth; by turns, it surprised her, pleased her, left her behind. Its readers increased, by the thousands from all over the world, so quickly that she resisted checking the stats, reluctant to know how many new people had clicked to read her that day, because it frightened her. (p. 303)

wiki brazilAs I find statistics fascinating I am not capable of exercising Ifemelu’s restraint. Besides, the WordPress data is rich: it is not only possible to identify the popularity of posts and track waves of interest, visitors to a blog can be mapped by location. Living with Autism might have been viewed only five times in Ifemelu’s native Nigeria but I am surprised that it has been viewed at all in some of the 122 countries listed in my blog stats. I love the roll call of Myanmar and Mongolia (1 each), Curaçao and Nepal (2 each), Kazakhstan (3), Costa Rica (4), Georgia (5) and Mauritius (6).

It isn’t particularly surprising that the majority of readers come from five English-speaking nations (UK, US, Canada, Australia and Ireland) but I could not have predicted the position of some countries on the leader board: India, for example, is in 6th position with 287 views and Brazil is not far behind in 7th  (220). I realise these viewings could be from multiple readers or from a few loyal followers; whoever you are, Namastē and Olá.

Making sense

wikiusThere are other, more complex, statistical analyses which can be done and, indeed, once a year WordPress sends a ‘review’ to bloggers, offering headline statements about their blog’s performance. At the end of my first year of blogging, two things caught my eye. Firstly, the majority of readers of Living with Autism were located in the United States. I saw annual reviews of other UK bloggers (on different topics) and noted with interest that their readers were overwhelmingly British. This could be linked to focus; certainly there seems to be more interest in autism in the US than in the UK (these statistics have recently changed and I now have slightly more British than American readers).

wikiukThe other headline finding from the WordPress review of my blog was that my posts had ‘staying power’. I should ‘consider revisiting some of the topics I’d already written about’, the review advised, as my historic posts continued to receive relatively high numbers of readers. This advice didn’t seem very meaningful as all my posts are on the same broad topic: Dylan and my attempt to understand how best to care for him. It occurred to me recently, however, that what the statistics might do is indicate specific areas of concern within the autism community.

While all blogs have some loyal followers, many readers arrive at a site via an internet search on a topic of interest to them. These searches must sometimes be very disappointing; when I wrote a post called He’s Not My Toy Boy, for example, Living with Autism received a number of hits from people who were probably hoping to find one. Some of my posts, however, are found by people who seem to be searching for exactly the topic I have written about.

Reader Concerns

tears5A post I wrote about Dylan not producing ‘real tears’ (Why Doesn’t My Autistic Son Cry Tears?), for example, receives unwavering attention. Every week it is at or near the top of the week’s viewings and it stands third in the overall rankings. What is distinctive about this post, and what intrigues me about it, is the way it has made quiet progress up the statistics page, overtaking even those posts which received a flurry of attention in the aftermath of being selected by the WordPress editors to be freshly pressed.

The post is actually one of my least favourite pieces of writing; it is short and inchoate, offering an observation but ultimately (I think) unsatisfactory. It is my third most popular post only because people keep finding it when they type ‘why doesn’t my autistic child cry’? (or something similar) into Google. If I were an autism researcher I would definitely be asking questions: if you have such a background, please note that significant numbers of parents claim their autistic children do not cry! Other common interests and concerns (if numbers of viewings can be considered an indicator) include the difficulties of chronological age in relation to autism (my most popular post by a long way); understanding autism through poetry (My Trees Have Grown Hair and The Frog Prince); and the gender implications of autism.

wildlife-imaging.co.ukTwo of these posts were Fresh Pressed so it is not surprising that they are among my most-viewed posts. What I do find surprising, however, is that (with the exception of my post about crying) my top five posts are among the most demanding of those I have written: they are long; some draw heavily on (and include) poetry; and they engage with sociological or philosophical ideas. The fact that these are my most popular posts reminds me to trust the reader; visitors to this blog have clearly been prepared to read longer posts, to engage with difficult ideas and to read poetry. These data also remind me of Ifemelu’s reflection that the readers of her blog were more prepared to be challenged than were the audience at her workshops; I will not assume in future, that virtual dialogue must by its nature (or format) be less challenging.

My Preferences

The readers’ favourite posts are not the same as my own preferences. The posts which I have most enjoyed writing, or which I feel most satisfied by, tend to be those which have made me think very hard (this one, for example, which tries to apply a scientific paper to Dylan’s life history); which I have needed to be courageous to write (such as this one about alcohol and autism); or which have been demanding in terms of format (usually because I incorporated poetry or fiction as in this one about the sea and this one about air travel). I have also enjoyed reviewing films and books  – though, again, my favourites are not the same as the readers’.

caul 002As well as identifying autism and ‘crying’ as a likely subject for further exploration, I have suggested other potential research ideas in some of my blog posts. In this post, for example, I hypothesise that Dylan’s use of the camera suggests lip gaze may be a more appropriate focus than eye gaze when considering the communication of ‘non-verbal’ children and adults, while in this post I suggest that the letters of the alphabet may be ‘read’ by visual learners as objects rather than as symbols. I have also tried to promote lines of enquiry into the role of the senses in memory and the role of art in the education. These, however, have not generated any particular interest 🙂

As well as not being beguiled by potential research questions or hypotheses, the data suggest that readers are less interested in ‘diary pieces’ (recording small incidents in my week) and posts which focus on my life rather than on Dylan’s or on religion/spirituality. These least-viewed posts often (though not always) have ‘less to say’ (i.e. they lack a revelation or transforming moment); like Ifemelu’s readers, visitors to this blog seem to have appreciated discussion of the ‘big ideas’. It seems to be the pieces with a tentative and more meditative voice – often those which incorporate poetic texts – that have been particularly popular with readers. While this doesn’t mean readers demand to be ‘uplifted’ or can’t ‘do dark’, there is an appreciation, I think, of the beauty and the celebration – what I think of as the ‘poetry of autism’.

Not learning from statistics

IMG_0029 (2)My purpose in setting up this blog was to share my experience of attempting to secure appropriate provision for Dylan after he left school. When he finally took up a residential place this summer, that journey came to an end and a new one began. As I noted in a previous post, the initial weeks of Dylan’s placement have felt like a ‘phoney transition’ in that I have been able to see him during the week as well as at weekends. Furthermore, as the majority of Dylan’s things are still with me, rather than at his new home, the full implications of the move have not yet sunk in for either of us.

In a few days time, however, it will be two months since Dylan’s placement began. I have returned to work after the summer break and a new academic year is about to start; I won’t be able to continue the transition activities which I have been able to prioritise during the first eight weeks of Dylan’s placement. The phoney time is over and real time is about to begin.

Rather than close this blog down immediately, I plan to keep a daily diary recording the first 100 days of living without autism. I imagine the pieces will be short and ephemeral and if they contain any ‘big ideas’ at all they will be stumbled upon. I noted earlier that the ‘diary type’ pieces on Living with Autism have been among my least-viewed posts which suggests that the next phase of this blog is unlikely to be popular 🙂 You could be forgiven for asking if I had learned anything at all from the WordPress statistics? Well, yes – but reader numbers have always been a bonus rather than an aspiration and I imagine this will be even more the case in future.

My aim in recording the first 100 days is to observe the impact of separation on me and on my relationship with Dylan. I hope that this will be as helpful to us in learning to live without each other as it was in helping us to live our lives together. Whether you are staying or leaving, thank you for accompanying us this far.

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Reference:
Adichie, C.A. (2014) Americanah. Fourth Estate

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

Nae Narrative: Goldilocks and the handbrake turn

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

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

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

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

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

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

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

*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

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

References

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

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