Dylan On The Island Of Sodor

I had the idea to take Dylan to the Isle of Man after reading that it was the basis for the Thomas the Tank Engine stories. The Isle of Man forms the Diocese of ‘Sodor and Man’ and the island’s Bishop is known as ‘Bishop of Sodor and Man’. There is, however, no island of Sodor;  the name is Old Norse and refers to the Scottish Hebrides which were once part of ‘The Kingdom of Mann and the Isles’ but over which the Bishop no longer has authority. The Reverend W Awdry modelled his fictional Island of Sodor on the Isle of Man, inspired by holidays he spent there as a child.

My research suggested the Isle of Man could be an ideal holiday destination for Dylan as well:  far enough to require an overnight stay in a hotel (which he loves), a ferry trip (which he adores) and (once on the island) trams and trains galore.  I am happy to report that the island didn’t disappoint…

Day One

I have kept my resolve of ‘no more Premier Inns‘  and Dylan, it turns out, is perfectly happy to stay in any chain of hotel.  What this has taught me is that Dylan uses language creatively:  when he said ‘moon’  (based on the Premier Inn logo) he meant hotel. Without the word ‘hotel’, Dylan found a word to describe the thing he wanted to talk about.  Now that we are not staying in Premier Inns, he uses the word ‘bed’ instead of ‘moon’.

Our en route overnight stays in Liverpool also reminded me how keen Dylan’s memory is. We had visited Liverpool once before and Dylan had enjoyed riding a carousel at the Albert Docks.  I had forgotten this but Dylan hadn’t; he said ‘horse’ repeatedly over dinner that evening and afterwards set up such a pace along the quayside I fell over trying to catch up. He was heading for the carousel I realised later (unfortunately, not working).

The fall was a shock: I sprawled flat out on the cobbles. Of course, people rushed to help me and I brushed them off – but afterwards I realised I was sore and bruised. It was a good reminder about supporting Dylan; after that, I made sure I kept him within reach, at the end of my voice. ‘You have to wait for your mum. Dylan’, I said. ‘I’m not as quick as you are’. For the first time, I had a sense of what it feels like to be an ageing parent.

Day Two

We left England in a heat wave and sailed to the Island of Sodor on a perfectly still sea. The next day, however, we woke to soaking rain. ‘Henry, Henry’, Dylan kept telling me. It took me a while to realise he wanted me to talk about the story where Henry stays in a tunnel because he doesn’t want to get his paint wet. It turned out that we would talk about Henry a lot during the week 😦

After a drenching on the coast path above Peel on our first day on the island, we headed back to our cottage in St John’s, the centre of the Isle of Man and the site of a Viking Parliament (or ‘Thing’). I was interested in the history and politics of Tynwad Hill but Dylan was more interested in the Tynwald Inn. He really enjoys spending time in pubs;  a packet of crisps and a couple of pints of blackcurrant cordial make Dylan very happy indeed.

We had daily ‘programme strips’ and an assortment of symbols with us and each evening Dylan and I would negotiate activities for the following day.  Later in the week Dylan picked out a ‘pub’ symbol and, looking to see if I agreed, added it on our programme for the following evening. I love it when Dylan’s symbols become genuine two-way communication like this.

 

Day Three

More rain so we drove to Port Erin where we took a steam train to Douglas. Dylan’s delight in the crashing waves in the bay reminded me not to assume that bad weather is a bad thing.

Day Four

As well as steam trains the island has an electric train line. Today we took it from Douglas as far as Laxey where we visited a water wheel – another of Dylan’s special interests. Then, it was up Snaefell, the highest mountain on the island, by electric rail. We couldn’t see much but sometimes it’s the journey not the destination that matters.  Dylan seemed to like riding the electric trains even more than the steam trains.

Day Five

today we woke to a strange silence on Sodor:  it had stopped raining.  We chanced the coastal path, tracking the southern peninsula between Port Erin and Port St Mary. We didn’t see any porpoises in The Sound but it was a fabulous day. The only tricky moment was when the steam train back to Port Erin which I had promised we would take (and clock-watched all day, so as to be in time for) didn’t turn up 😦  Dylan was rattled but he accepted the ordinary alternative (under any other circumstances his heart’s delight) of a country bus…

Day Six

More rain. More road diversions (something to do with Quad bikes and the TT). Undeterred we found a way to Ramsey where we took the electric train south to Laxey, the point at which we had left the line earlier in the week. This was not my best idea; having been to Laxey before, Dylan wanted to re-visit the wheel and take the mountain train again. And the train timetable wasn’t set up to accommodate my itinerary; we had a long wait on the platform for a northbound train. Back in Ramsey, it was still raining…

Day Seven

On our last day we woke to sun 🙂 I had been told to make sure I visited one of the island’s many glens so today we followed a Greenway before plunging into Glen Maye. Here was justification for rain: green, lush, strangely tropical.  Oh it was glorious! The attraction, for Dylan, was a waterfall; he watched the water, transfixed. The glen winds down to a small cove where Dylan threw stones. Then it was a scramble up to the coast path and on to Peel where we visited the castle and (at last) paddled in the sea.

Day Eight

Douglas is famed for its horse trams but we hadn’t seen them all week due to the rain. Dylan had seemed curious about the ‘horse and carriage’ symbol we had with us so I was pleased to see them in Douglas on the day we were leaving. They operate to a strict timetable, however, and there wasn’t time for us to ride around the bay before check-in for our ferry.

Explaining this to Dylan was difficult. He was insistent, pulling me towards the horse and trying to climb into the carriage. A quick-thinking passenger  suggested we ride as far as the Villa Marina and walk back in time for our ferry. I was a little nervous about whether Dylan would get off when the time came but I decided to chance it.  I am glad that I did as it turned out that Dylan had a particular reason for wanting to ride in a horse tram. As we set off he turned to me and said ‘Pinocchio’, with an air of satisfaction. Pinocchio? I replied, puzzled. Then I remembered that, at some point in the story, Pinocchio rides in a horse and carriage; Dylan had made a connection between his life and his books.

On the boat, Dylan loves to look out at the wake behind us.  I had pre-booked seats in one of the lounges and we were lucky that this gave access to a small deck at the back where Dylan could stand. He was there for over an hour after we left Liverpool and it was the same when we left Douglas. As we pulled away, the Isle of Man seemed tethered under cloud like myth.

Day Nine

We stayed a night in Liverpool again on our return journey (sadly, the horse carousel was still not working). Before we left next morning, we called in to see an Egon Schiele/Fancesca Woodman exhibition at the Tate. I hadn’t been to Tate Liverpool before so this was a great opportunity to visit and an excellent end to the holiday. How lucky I am that Dylan shares my love of art – his visual intelligence and sensitivity make him a most excellent person to visit with 🙂

Stopping to picnic on the way home, we needed sun hats; England was as warm as when we left. We had had such a good time on the Island of Sodor, though, the rain didn’t matter. ‘We weren’t like Henry’ I said to Dylan. ‘We didn’t mind getting wet’.

 

 

Being Harry: Autism and Virtual Reality

While I was watching England hold their nerve against Columbia last week,  Dylan was in Whitby with his key worker and another member of staff. Dylan is impatient for the sea and the overnight trip had been planned to help Dylan manage the wait-time for his summer holiday.

I know that not everyone is interested in football. However, the progress of the current England team is so unexpected that even those without any interest  in the game (my Dad, for example) are aware of what is happening.  It feels a bit like fantasy football.  I’m sorry that the trip has coincided with the England match, I said to Dylan’s key worker.  I had an idea he might otherwise have been  watching the match in the pub with his mates.  That’s OK, he replied.  I would have been working anyway.

Team Changes

Dylan’s key worker also told me he would be moving on soon.  I wasn’t surprised by the news. I understand that young people, wanting to start a family of their own or buy a first home, have financial considerations which affect decisions about work. As I’ve noted before, support workers are not well paid for the job they do.  Caring for others is one of the most demanding and valuable of roles and yet it is also one of the mostly poorly rewarded. As a consequence, staff turnover is high.

Dylan has been lucky to have been matched with experienced staff  but, even so, he has already had three different key workers. When Dylan’s first key worker left I was devastated. It hadn’t occurred to me, at that point, that this would be a feature of life in residential care. When Dylan’s second key worker left, after a fairly brief succession, I realised the role would always be temporary. The key worker may be the warden of the key but I shouldn’t assume they would be around long enough to unlock the door (as it were).

A potentially positive outcome of this situation, however,  is that it has helped me identify one of the  arguments I will make on my application to be appointed Dylan’s Welfare Deputy:  given the high staff turnover in the care sector, the continuity of support which a family member provides is invaluable, particularly in the context of someone who, as well as lacking mental capacity,  is autistic and non verbal.

Harry’s World

An American friend emailed recently to say she would be visiting with her teenage children next month.  Maybe we could visit Harry Potter World? she wrote.  I was excited by the idea but when I looked online I realised it was impossible; Harry Potter World is already booked up for the summer.

When Dylan’s first key worker moved to a new job she organised a trip to Harry Potter World for Dylan and another young adult. As well as a fabulous day out for the staff and residents, this was a good way of marking E’s departure. So when Dylan’s current key worker told me he had a new job, I commented that the trip to Whitby was perfectly timed in terms of helping Dylan make a connection with saying goodbye.

The trip to Harry Potter World was Dylan’s first immersive experience (I’m sure he would love Disneyland but I’ve never had the oomph to take him). Dylan, apparently, had a marvellous time,  ‘laughing all day’. They had arrived slightly early for their tour, having driven down from Yorkshire,  and the Harry Potter staff, realising the wait might be difficult for Dylan, had let them join an earlier tour and proactively made adjustments for Dylan, such as front row seating.  I couldn’t fault their practice, his key worker told me, it was an absolutely brilliant day.

 

Virtual Reality

Afterwards I wondered what Dylan had made of the experience. Did he think he was at Hogwarts? Does he believe Harry Potter is real? I remembered a conversation with a clinical psychologist at a time when Dylan’s ‘behaviours’  were a cause for concern. As we worked through his ‘incident charts’ the psychologist noted the link between Dylan’s anxiety and the films he watched.  It may be the case, the psychologist suggested, that Dylan cannot differentiate fantasy from reality. Perhaps, when he is watching a distressing scene in one of his DVDs, he finds it difficult to regulate his emotional response. Dylan’s extreme reactions to some of his films are understandable if you imagine them as responses to situations he believes are real. After all, these are extreme situations:  separation; loss; death; war.

Apparently there are ‘immersive cinemas’ which offer a total sensory experience. As well as a film being a visual and aural event, the senses of smell, touch and taste are engaged.  Thus during an ocean scene the audience might be sprayed with water; in a domestic setting, smells of home cooking could be released into the auditorium. I’m not sure whether this would be a good or a bad thing for Dylan, given his heightened sensory function.

I have similar reservations about the possibilities offered by Virtual Reality Headsets.  As they have become available on the mass market I’ve toyed with the idea of buying one for Dylan. Some aspects might appeal  – Dylan spends so much time watching films that the idea of him being able to enter an immersive and participatory environment is quite exciting. I’ve seen some people, however, become disoriented  when using the Headsets and describe the experience as unsettling. Equally, therefore, I can imagine Dylan being made anxious by such full engagement of the senses.

Fantasy Football

Right now, I feel as if I’m wearing a Virtual Reality Headset. England? In the World Cup semi-final? For the first time I changed my plan for spending time with Dylan last weekend. After the 120 minutes plus penalties marathon against Columbia earlier in the week, I wasn’t sure Dylan and I could spend Saturday afternoon together without one or both of us becoming frustrated. Dylan can cope with a little bit of football on TV but he has his limits. And I really wanted to watch the England v. Sweden match. Could I pick Dylan up on Sunday instead of Saturday? I asked staff.

It really does feel like a Fantasy Football Tournament. The scenes from the Samara Stadium last Saturday seemed beamed from a parallel universe.Are those fans trapped in Virtual Reality, I wondered? Has my TV turned into a giant VR Headset? When England won I toyed with the idea of getting on a plane to Moscow to find out.

If England do get to the World Cup final this year, I told myself, someone will set up an It’s Coming Home theme park where we can re-live the matches, as players or fans, in a fully immersive world.  The theme park will probably be somewhere just off the MI –  hopefully in the north, rather than the south, in honour of the contribution made by South Yorkshire to the winning England team. So while Dylan hangs out with Harry Potter, I can celebrate with Harry Maguire…

 

 

Note:

The photographs of Dylan at Whitby and Harry Potter World were taken by staff on the trips.  The other images are sourced from the Internet and to the best of my knowledge are copyright free.

The photograph from the 2018 World Cup shows England players celebrating a goal in their match against Sweden at the Samara stadium on Saturday 7th July. The goal was scored by Harry Maguire (second from right in the photo) who is from Sheffield, my hometown. In the photo he is being congratulated by John Stones who is also from South Yorkshire (Barnsley). The photograph shows Kieran Trippier on the left and another Harry (Kane) on the far right.

The final photograph shows the 1966 England World Cup squad. I was alive but too young to remember 🙂

 

Mothers

In the news recently, a claim that ‘missing microbes cause childhood cancer’. New research, apparently, suggests that a child’s immune system can become cancerous if it is not exposed to enough bugs early in life:

https://www.bbc.co.uk/news/health-44199844

Although we are reassured that ‘This study is absolutely not about blaming parents for being too hygienic’,  imagine the impact if you are the mother of a child with cancer? As well as dealing with the distress of witnessing your child’s illness, you are offered the possibility that your own care-giving practice might have been responsible. ‘Another way to knock mothers’  I thought to myself when I read the report. I’ve about had my bellyful recently…

Mother blame

Last semester I was asked to take a seminar group for a module which focuses on psychological perspectives on educational processes. I don’t usually teach on the module and I found the opportunity interesting and often valuable. One thing I was struck by, however, was how often mothers are blamed for poor educational outcomes.

I was already aware of the link between early literacy and maternal education, a relationship which tends to act as an indicator of socio-economic class.  Last semester, however, I encountered research which linked  child outcomes to psychological factors such as maternal self-efficacy, maternal self-esteem and maternal resilience. While these may also be associated with social class, I found it interesting that there was no mention of paternal well-being; rather than associate poor outcomes with the broader context of home, they were laid firmly at the feet of the mother.

As well as linking mothers to outcomes in relation to child development and achievement, research studies have suggested a relationship between mothering and a child’s experience of school. Studies of bullying, for example, have suggested that ‘maternal hostility’, ‘maternal mental health’, ‘maternal demand’ and early motherhood all positively correlate with a child ‘having a participant role in bullying behaviour’.

A framework of ‘cumulative risk’ identifies ten key factors which affect educational outcomes, four of which focus explicitly on mothers: mother-child interaction during infancy; maternal mental illness; maternal education; and maternal anxiety (the other factors involve  structural risks, such as family size and minority ethnic group, and circumstance, such as life events and family support). Mothers have also been blamed for not doing enough to assuage educational disadvantage;  not only do they comprise 40% of the cumulative risk to children, mothers are the key  to protection as ‘maternal resilience’ is identified as most likely to offset risk.

Had I been resilient when my children were young, I asked myself?  Was I emotionally available through those difficult post-diagnosis years?  Did I control my anxiety about the future? Make appropriate demands on my children?  Had I kept my spirits up and sense of identity intact? I couldn’t, in all honesty, answer Yes to any of these questions…

Bettelheim and beyond

Most mothers with a child who has been diagnosed autistic hear about Bruno Bettelheim’s ‘refrigerator mothers’ at some point. Even though we are assured his work is now discredited, for the mother of a newly-diagnosed child it is very difficult to encounter Bettelheim’s claims. I certainly experienced them as cruel following Dylan’s diagnosis: I was doing everything I could to support my child, yet here I was being framed as the problem.

You’d think this was a thing of the past. In recent years, however, a new form of mother blame is gaining currency. Mothers (for it is typically mothers, not fathers) are framed as ‘infantilising’ their autistic children by over-protecting them and failing to recognise them as autonomous individuals. This is a discourse which has emerged in tandem with a commitment to developing independence, an agenda freighted by the voices of self-advocating autistic adults.

Two assumptions seem to be at work here. The first is that a non-autistic mother of an autistic child will necessarily privilege the neurotypical and try to ‘fix her child up’ and/or be over-protective and infantilise her child.  Allied to this is the suggestion that mothers who are not diagnosed as autistic themselves have no right to speak for their autistic children due to their lack of understanding of autism.  A recent blog by Paula Sanchez refers to the “warring factions of ‘autism moms’ and autistic activists”. In the article, Sanchez caricatures a neurotypical  ‘autism mom’ and an ‘autistic mother’:

https://autisticmotherland.com/2018/04/20/from-autism-mom-to-autistic-mother/

Sanchez  urges  ‘autism moms’ to ‘prioritise your child’s autonomy over and above everything else’  and to encourage their autistic identity as part of the process of self-advocacy.  While of the view that non-autistics can probably never understand being autistic, however, Sanchez acknowledges: “it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.”

Who speaks?

As the mother of a non-verbal autistic man I find it useful and often illuminating to hear the testimony of autistic adults who self-advocate.  Their voices give me new ways of thinking about Dylan and how he might experience the world. The demand by autistic self-advocates for ‘nothing about us that isn’t by us’, however, challenges parents (such as myself) who advocate for and on behalf of a son or daughter.

Once again I find myself struck by the complexity of the intersection of intellectual disability with autism. As someone who lacks mental capacity, my son is not able to take part in the conversation; not only does he not have a ‘voice’, he is unable to make informed decisions about his life.  As I have argued elsewhere, concepts such as ‘independence’ and ‘autonomy’  take on a different shape when viewed through the lens of intellectual disability.

So who should identify Dylan’s best interests? Who speaks for Dylan and other autistic adults with intellectual disability? Sanchez acknowledges, in the post referred to above, that: “My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children.” The fact I don’t have an autism diagnosis might prevent me from understanding some aspects of Dylan’s experience,  but the deep and enduring relationship I have with him as a mother must surely have heft? And, as I have argued elsewhere, the alternative to advocacy for those with intellectual disability is not self-advocacy, it is silence.

Liminal mothers

Some academics (mothers of disabled children themselves) have questioned the assumptions which have been made about the role of parents in a disabled child’s life. Ferguson (2001) argues that parents carry their child’s impairment as part of their own lived experience and are therefore well placed to advocate for their disabled children and bring about positive change in their lives. Similarly Kelly (2005) observes that parents ‘act as experiencers, interpreters and agents’ through their intimate connection to the experience of their disabled child. Parents’ embodied experience of care-giving is not ‘second-hand knowledge’ of disability, Kelly argues, but rather a ‘partial knowledge’  which allows parents to share some of their child’s experience and meaning-making.

Ryan and Runswick-Cole (2008) have described the position of mothers of disabled children as ‘liminal’, rather than partial. They argue that mothers who are not themselves disabled must operate in a landscape of ‘oppressive mothering ideologies and disabling environments’.  Because of their distance from mothers of non-disabled children, as well as their tenuous position within the disabled community, non-disabled mothers of disabled children occupy a liminal space. Ryan and Runswick-Cole refer to the resulting ‘difficult and contentious debates about the role of non-disabled people within the lives of disabled people’ and the way in which ‘the actions of mothers have been interpreted as constraints within their children’s lives’.

It is interesting that the two concerns highlighted by Ryan and Runswick-Cole  – advocacy and autonomy – are the same as the issues identified in this post, written ten years later. It seems the current wave of mother blame may have been a long time gathering. In their 2008 paper Ryan and Runswick-Cole suggest that one of the reasons mothers might seek diagnostic labels for their children is in order to shift the discourse from ‘mother-blame’ to ‘brain-blame’.  While this may have been the case ten years ago, particularly in relation to autistic spectrum conditions, there has been a significant shift in the discourse to a celebration of neurodiversity and the claiming of autistic neurology as a vital part of self-identity. Against this backdrop, perhaps, there is a tendency to reposition blame (for a perceived lack of independence and the appropriation of voice) with the mother.

Liminal sons and daughters

Although I am uncomfortable with the way in which it is the mother, rather than father, who is subject to surveillance and criticism in relation to the ability to parent a disabled child, I am not averse to critical feedback and scrutiny. I often wish it were kinder, more supportive and more sympathetic. I would also prefer those without experience of parenting (even if they are themselves autistic) to acknowledge their own partial knowledge. Sanchez, in the post referred to above, makes some helpful observations and suggestions for building bridges between the ‘warring factions’ of autism parents and autistic adults.

What is still absent from these conversations, however, is any acknowledgement of autistic adults with intellectual disability. If the position of mothers of disabled children is liminal, then the space occupied by adults with intellectual disability is a similar limbo. As I argue above, the position of autistic adults who lack mental capacity is often unrepresented and overlooked. In challenging the ability of parents to advocate for their disabled sons and daughters, I would argue, we are putting the welfare of adults with intellectual disability at risk.

There is a legal system in the UK for the protection of the financial and welfare interests of those who lack capacity. It is a little-used system and one which is not easily accessed or much discussed.  In the last year, increasingly frustrated by the position of parents in relation to an adult child with an intellectual disability, it has become clear that it is a system I need to engage with.  So, once I’ve finished work and the football is over, my plan is to start the process of applying to the Court of Protection to be Dylan’s Deputy.  More about this in a future post…

Note:

The claims in the section of the post entitled ‘Mother Blame’ are from chapters 8, 9 and 11 of Woolfson (reference below). The images are sourced from the internet and to the best of my knowledge are copyright free. I’ve been unable to identify an artist for the image of the ‘floating woman’ but it was used as part of a lecture series on liminal space by Dr KD Farris. The image of the floating man is ‘Liminal Space’ by Nicholas Scarpinato.

Sources:

Barrett, E. (2017). Tied to the Worldly Work of Writing:  parent as ethnographer. Journal of intellectual Disabilities.  https://doi.org/10.1177/1744629517741008

Ferguson, P.M. (2001). Mapping the Family: Disability studies and the exploration of parental response to disability. In G.L. Albrecht, K.D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 373-395). Thousand Oaks, CA: Sage.

Kelly, S.E. (2005). ‘A Different Light’:  Examining Impairment through Parent Narratives of Childhood Disability. Journal of Contemporary Ethnography, 34, (2) 180-205.

Ryan, S & Runswick-Cole, K (2008). Repositioning mothers:  mothers, disabled children and disability studies. Disability & Society, 23 (3) 199-210

Woolfson, L.M. (2011).  Educational Psychology:  The impact of psychological research on education. Harlow:  Pearson

 

About Time

Dylan in Durham earlier this month…

The trip to Durham might have been successful in all sorts of ways but it didn’t satiate Dylan’s desire for a holiday. We had only been back 24 hours when the questions about ‘cottage’, ‘ sea’ and ‘boat’ started up again.  Dylan enjoyed our city break but it wasn’t the holiday he knows, in his sinew and bone, he has not yet had this year and which he is not going to let me forget.

Are you sure we can’t make him a countdown chart to our Summer holiday? I asked the staff at his care home.  I have booked a holiday on the Isle of Man, which I have an idea might be Dylan heaven: an overnight hotel en route, a ferry boat crossing, holiday cottage, sea all around us and trains, trams and funiculars. But that isn’t until the end of July.  I don’t think we can give him a three month countdown chart, the team leader reflected.  Having a picture of the holiday such a long way off could be difficult for Dylan.

So Dylan has continued with just his weekly programme. When he’s asked ‘cottage’ or ‘sea’ or ‘boat’ we’ve said:  not this week, Dylan, or later, or sometimes (in desperation) soon Dylan. Of course, none of these are easy, or I suspect meaningful, for Dylan. Time, as I have frequently noted, is one of the most difficult concepts for Dylan to grasp.  If you add to this our inability to explain to Dylan the practicalities of work and money, and that we cannot take holidays whenever we want to, then we have a potentially frustrating situation. Dylan is communicating beautifully with us and waiting patiently for a response, but it must feel as if all he is hearing is ‘No’.

The future is a cork board

Cork board with countdown chart added

One of our routines, when I return Dylan to his residential setting after his weekend at home, is to go through his weekly programme.  Dylan’s programme is fastened to his whiteboard and we talk about everything he will do in the week, ending with my arriving to collect him the following weekend. Dylan points to the pictures and I name them, sometimes signing and sometimes pausing to see whether Dylan is able to name them himself.

When I was talking Dylan through his week a couple of weekends ago, however, his finger didn’t stop pointing when we got to my arrival the following Saturday – instead, he gestured at the cork board to the right of his whiteboard.  He walked over to it, stabbing at it with his finger and looking at me quizzically. I’m not sure what you want, Dylan. I said. The member of staff who was with us pointed out that the cork board is where Dylan pins his countdown charts when he has them. He was asking what would happen after next week.  So Dylan does have a sense of future time, albeit in a representational way:  the future is a cork board.

The shop that sells the sea

So I drove away thinking about our summer holiday and how best to support Dylan with this. I calculated that if I speeded up a bit with my marking I could take a couple of days off work later in the month.  Added  to a weekend, this would give Dylan four or five days at the coast. That would do it, surely?  So later that week I booked a few days on the Yorkshire coast; while we won’t need a boat to get there, it is by the sea and we will be staying in a cottage.

That afternoon I received Dylan’s weekly update; this is a summary of Dylan’s week with a particular focus on any ‘incidents’. The email opened : Hi Liz, He’s had a really good week this week no incidents so far he has been trying to get into travel agents while in [nearby town] but he was directed away.  Trying to get into travel agents!  How I laughed.  I have never taken Dylan into a travel agents and to my knowledge he has never been in one. And yet he had figured out  – presumably from the visual clues in the window – that this is a shop that sells the sea. How clever! Visual intelligence. Initiative. Creativity. Communication. And Dylan’s steel will and determination…

Managing time

I replied to the email to say I’d fixed something up for later this month.  The staff were also thinking of ways to respond to Dylan’s requests; his key worker had volunteered to investigate the possibility of taking Dylan on an overnight trip to the coast in June.  With countdown charts to the breaks in May and June, Dylan should hopefully find it easier to manage time.

When I saw Dylan last weekend he had the chart with him and seemed to be enjoying crossing off the days. Back at his care home he requested tape to fasten the chart to his cork board, next to his weekly programme (as in the photo above). Dylan didn’t seem as anxious about his schedule when I left and needed less reassurance than the previous week about the ‘sea’ and  ‘cottage’ (I am trying to play down the issue of a ‘boat’). When I telephoned for an update last night I was told Dylan has been calm and happy all week and that the chart seems to have helped.

The red book

Perhaps, as Dylan’s understanding of time develops, he will need new strategies for managing it? Something which seemed to help Dylan in the past was his filofax. Although this didn’t have countdown charts and schedules in it, Dylan used it as an ‘object of reference’ for the management of time. He was aware, for example, that it contained the key information and cards he needs to access the activities he enjoys. He carried his filofax everywhere and would bring it to us if he wanted to request an activity. The filofax seemed to be such an important part of Dylan’s life, and so precious to him, that I was horrified when he destroyed it one night when he was anxious and upset about something which the support staff, on that occasion, were unable to fathom.

Since then, we have used a notebook to keep records and pass messages between home and care home. Dylan knows these notebooks have replaced his filofax and he keeps them in the same place, but he has never had quite the same attachment to them. Last weekend I noticed we had filled the last page of his current book so I suggested to Dylan that we go to the store to get a new one.  We went to a large Office Supplies shop where Dylan bought his filofax three years ago. As I picked up various notebooks  Dylan pushed my hand back towards the shelf in his ‘put it back, I’m not interested’ gesture. This continued all the way up the aisle. Then Dylan escorted me to the filofax section where, after consideration, he picked one out.  I suggested some alternatives but he wasn’t having it; Dylan hugged the red book to his chest as if to stop me from taking it from him.

Anxious Times

Dylan stood the empty frame in its usual place when he came home…

I hesitated about  buying the filofax for Dylan because it was upsetting when he destroyed the other one – not just for those who care for Dylan, but for Dylan himself. Dylan only ever destroys things which matter to him; he seems to self-regulate,  at times of high anxiety, by channelling his emotion through meaningful objects.  So although we have made  various ‘ripping’ resources available to Dylan, it is his favourite books and DVDs he tears when he is anxious. This means the aftermath of these events is upsetting for Dylan as he realises the loss of things which were important to him.

Dylan tearing possessions to self-regulate could be seen as a positive development in that he used to tear people’s ears when he was anxious, something which he now does only rarely. As the cycle of destroy-replace became increasingly entrenched, however, it no longer felt like a practical strategy. Recently, I’ve been experimenting with not replacing the things which Dylan rips.  This has been partly effective in that Dylan hasn’t been tearing books and DVDs as he used to. What it has meant, however, is that his focus sometimes switches to other things.

I was devastated, a few weeks ago, to hear that Dylan had torn the photo of his Gran during an incident.  Like filofaxgate, it was the sort of event that was difficult to fathom. Why? Dylan loved that photograph. He kept it by his bed, took it on overnight trips and carried it with him at times of emotional need (or at least that’s how I perceived it). It was, as far as I was concerned, the most precious of his possessions (greater than even his filofax had been) and therefore immune from danger at times of distress. Well, I turned out to be wrong about that. When I told my daughter she was upset (for Dylan) and cross (with me). She reminded me that the photograph had belonged to her, originally. Don’t give Dylan photos of my Gran if you don’t have copies of them, she said.

Changing Times

The ‘duplicate’ of the one Dylan chose…

So the following weekend, when I found Dylan with a photograph of mum he had snaffled from my room, I took it from him:  That picture of your Gran belongs to mummy, I said. The next day I went through old albums.  I didn’t have the time or energy to make copies right now (a  project for retirement maybe) but  I found some ‘duplicates’ – photos where another was taken soon after, so there is hardly a difference between the shots. I made an album of these, and some other photos, and showed them to Dylan. Would he like to choose one to keep, I asked?

I was surprised by Dylan’s choice. It is an aerial shot of me and Dylan on a beach in Dorset, taken in 2007. We are absorbed in the pebbles and too far away for Dylan and I to be ‘subjects’ in the photo (unlike the photo of his Gran, which was a portrait shot).  Presumably he chose this picture because it reminds him of a happy time?  I liked the fact that Dylan replaced the photo of his Gran with something quite different. There is a sense in which it represents him moving on, perhaps; finding new ways of using the past to help manage the present.

About Time

When I collected Dylan last weekend he wasn’t wearing his trademark Breton hat.  I was shocked. Dylan is never  without that hat; it stays fixed to his head when he is out of the house and he is very good at looking after it. Where is your hat, Dylan? I asked. He hasn’t ripped it, has he? I asked the member of staff who was with him. She didn’t know. In fact she hadn’t noticed that Dylan didn’t have it.  But now I had mentioned it, Dylan was on it:  lost it, he said, lost it.  Then:  find it, find it. 

We checked Dylan’s drawers and cupboards and the cars and rooms of other residents.  I drove to the pub where Dylan had been for lunch the previous day. The hat could not be found. Why don’t you wear a different hat for now, I said to Dylan, giving him a choice of three caps from his cupboard.  He chose a green one.  I’ll sort it out for you I promise, I said to Dylan.  I was telling the support worker that I had brought the lost hat back from Brittany and that Dylan had bought his first Breton cap in St Malo when we were on holiday in 2013, when I noticed Dylan looking at me as if he was listening to the conversation (as I think he quite often does).  Hey  Dylan, I said, perhaps we should go to Brittany next year and get you another hat? Boat, Sea, Cottage I thought to myself as I said this.  Dylan rolled his eyes as if to say About time.

No More Moons

Dylan and I usually go away twice a year, at Easter and during the Summer. For the first time ever, we didn’t have a holiday at Easter this year. I wasn’t sure whether Dylan would notice but he was clearly disappointed.  Although time is not an easy concept for Dylan he makes associations with key events through the year and keeps track of it. So when I gave Dylan his Easter Egg he looked at me and said ‘cot’ quizzically. He was, I realised, asking me when we would be setting off to a holiday cottage. ‘Not this year, Dylan’ I said.  ‘Boat?’ he asked, hopefully.

I hadn’t booked a cottage (or boat) for Easter because I thought my marking might fall awkwardly  this year and that I would have to work through the break. In the event the students have only just submitted their assignments so I could have taken Dylan away after all. Perhaps next year I will. Meantime, I am experimenting with regular overnight trips instead;  the money that we would have spent on a week’s holiday I am planning to use across the year.  This should mean that I can take Dylan on a short break every six to eight weeks.  I will be curious to see whether ‘little and often’ is better for Dylan than less frequent longer breaks.

So last weekend Dylan and I went to Durham, a place he loves and which he has recently been ‘asking’ to visit again (‘asking’ involves Dylan collecting leaflets of things he is interested in and stacking these up in piles in his bedroom like ‘vouchers’). Conscious that the last time Dylan and I went on an overnight trip (visiting Brighton for his birthday) I  vowed never again to stay in a Premier Inn, I decided  this trip would be a good opportunity to try and extend Dylan’s repertoire.

I knew that moving Dylan from the Moon wouldn’t be easy. Dylan has been fixated on ‘Moon Hotels’ for years and staying in Premier Inns has been part of the raison d’être of our trips. Dylan adores the moon logo and enjoys  the familiarity of the purple branding and predictability of  facilities and services. The buffet breakfast (as much as he can eat of things he loves) is probably also part of Dylan’s love affair with Premier Inns 🙂 I figured that if we were going to stay somewhere different I needed to ensure it offered something the Premier Inn couldn’t; I wanted a hotel with compensating attractions. So I browsed the other hotel options with Dylan’s favourite places and activities in mind and opted for a hotel on the bank of the river which Dylan likes to walk, with a view of his beloved Cathedral.  I also had an Ace in my pocket:  the hotel had a swimming pool.

Staff at Dylan’s care home suggested that I show Dylan the hotel website and include a photo of it on his programme. This seemed to go well. The pool, in particular, captured Dylan’s attention and was the thing he talked about on the run-up to the trip; when he pointed to the photo of the hotel on his programme, the words he said were ‘pool’ and ‘swim’ rather than ‘bed’ and ‘moon’. So I set off for Durham optimistically, fairly confident we had prepared Dylan for the change of routine.

On arrival it was clear that  Dylan had  understood we would not be staying at the Premier Inn; he didn’t protest at all when I made a right rather than a left turn on the walk from the railway station. I had put a note on the hotel booking to say I would be supporting my autistic son and if we could be allocated a twin room with a decent amount of space between the beds that would be appreciated. I had also said that if there was any way we could have a room with a river view that would be fantastic, but that space was the priority.

In my experience such requests are frequently ignored; I have often had to return to reception to ask for an alternative room.  As for adding a note about dietary requirements (I am vegan) I have wondered why I bother.  So I was amazed, on arrival at the hotel, to find that we had been upgraded to a family room (lots of space) overlooking the River Wear and that there was a jug of soya milk in the room.  Dylan seemed to enjoy the space and the view from the window!

Food is very important to Dylan and, happily, dinner and breakfast met with his approval.  Best of all, however, was the pool.  I hadn’t scheduled it on Dylan’s programme as I needed to check it was safe and that I could supervise alone. This is important because Dylan is a non-swimmer with high risk behaviour around water: in the past, he has leapt into water fully clothed, waded out of his depth  and plunged underwater, attempting to stay below.  Fortunately, the hotel pool turned out to be ideal (it did occur to me that had I found otherwise it would have been very difficult to say no):  fairly small, not deep and quiet.  We spent a lovely hour in the water before breakfast on Sunday morning, an excellent way to start the day.

I had assumed that staying at a different hotel would be challenging for Dylan and that it would be important to maintain his other routines while we were in Durham. However, breaking the Moon habit seemed to loosen Dylan’s patterns more generally. So instead of having lunch in our usual café on  Saturday we tried a different  place. I was thrilled; the vegan options were much better and Dylan caught the spirit of adventure and had a Panini.  I am guessing this was a positive experience because he accepted a different café again the next day.

Dylan was also open to taking different routes around Durham,  changing the order in which we did some of his favourite things and trying new activities. So on this trip we walked further down the river path than we had previously and discovered Old Durham Gardens. Further on, we happened on a pub – this was just what we needed after a long walk on a sunny Saturday. Dylan enjoyed it so much I suspect future trips to Durham might involve a walk to the Rose Tree 🙂  Then, on the rainy Sunday, we looked around exhibitions at the Cathedral  and Palace Green Library, something we hadn’t done previously. Again, this was a great success with Dylan’s interest captured by the acoustics of the Great Kitchen and a collection of skulls and bones.

I will be interested to see if Dylan builds some of these places into a revised repertoire next time we are in Durham. Another visit might not involve the same hotel – although we got a good deal on the booking it was more expensive than usual and I don’t want Dylan to grow too accustomed to such facilities 🙂  However, I now have the confidence to try something different again if need be.

 

 

 

What have I learned from this experience?  That Dylan’s ‘routines’ are partly maintained and constructed by me.  Once he has enjoyed something, I tend to let him repeat the experience as it gives him pleasure.  This becomes a pattern that is familiar and dependable and which Dylan starts to recognise. However, he is dependent on me breaking these patterns as well as creating them and I should perhaps be more proactive in suggesting changes to routines. The memory of Dylan smiling and laughing on the train home should help me not to forget this 🙂

 

Awkward Greetings: a neurotypical in autistic space

For many academics, now (before the marking comes in) is the ideal time to get away to a conference. As well as providing feedback on work in progress, conferences are a chance to network with colleagues from other institutions.

“You love it, don’t you.”  I said to a colleague as she put the finishing touches to a paper she is presenting in New York this week.

“Love what?” she replied.

“The conference thing.”

“Oh yes.” she said. “Absolutely. It’s my thing.”

Conferences aren’t my thing. They make me anxious. I have three issues with them. Firstly, they tend to be held in venues I find difficult to navigate;  I don’t like unstructured or open plan spaces with confusing layout and flow.  Secondly, I hate the eating arrangements at conferences; typically these involve juggling with a plate, cutlery, drink and conference papers while making small talk with a stranger, standing up. And thirdly I dislike the constant social demands. I don’t have an autism diagnosis but put these things together and a conference is likely to trigger my version of a meltdown: imploding in my room, avoiding everyone. I imagine the way academic conferences make me feel may be similar to the way Dylan experiences the world much of the time.

*

Developing enough self-awareness to recognise  conferences make me uncomfortable was helpful but it took years for me to admit that I didn’t enjoy them, even after I’d stopped going. Then, a couple of years ago, I was asked to give a presentation at a National Autistic Society (NAS) conference. This presented me with a dilemma.  I had been asked to contribute a parent’s perspective of supporting a young person with autism and intellectual disability (i.e. Dylan) into adult services.  This was a story I felt passionate about sharing; the experiences of ‘non-verbal’ autistic children and adults with a co-morbid diagnosis of intellectual disability are so often overlooked and I was delighted that the conference organisers were making  space to represent a narrative from this group.

I find it frustrating that Dylan is usually absent from accounts of what it means to be autistic:  the representations on TV, in film, in books, on the radio, on social media, in campaigns and (sadly) in training sessions and at conferences (even those which purport to focus on ‘autism’) tend not to have much relevance to my son’s life. I understand why this might be the case.  Those with intellectual disability as well as autism don’t always make for easy footage; there may be behaviour which is difficult to understand or which may challenge. If the young person or adult is also non-verbal the narrative is difficult to access; the process of advocacy is mostly conducted through language and without this people tend to be invisible.  Perhaps more importantly, those who are judged to ‘lack capacity’ as well as being ‘non-verbal’ are not only incapable of self-advocacy but unable to give consent to someone else to advocate on their behalf.  It is hardly surprising, given these layers of complexity, that people such as Dylan should be absent from accounts.

I am of the firm belief, however, that it is better to have the account of an advocate than to have no account at all; as I argue elsewhere, “if we are to include the perspectives of those with intellectual disabilities, we must accept the voice of an interlocutor” (Barrett, 2017, p. 5).  The invitation to speak at the conference was not something I could dodge; however difficult I found the process, I had to do this for Dylan. Besides, this was an NAS conference;  I would probably find the practices designed with autistic delegates in mind helpful.  I could, for example, wear a red badge to signal ‘please don’t approach me’ if I felt overloaded socially.  If I could be comfortable at any conference, surely it would be here?

*

So I went to the conference and, happily, all was well. I think this was because of the company of a couple of people I felt comfortable with and the privileged access I enjoyed, as a speaker, to a  sort of ‘green room’. I made heavy use of the room, retreating there with my plate of food at mealtimes and in-between sessions. I was conscious, during the conference, that I would probably not have found the event so comfortable were I attending as a delegate.  The NAS had introduced some thoughtful practices (such as the red badges) but these could not counter the usual challenges.

The venue involved difficult mezzanine spaces with noisy break out areas and cavernous rooms with difficult acoustics. As well as the lack of physical boundaries and the noise and cold, there was a lot of juggling with difficult food and a lack of private space. And I don’t even have an autism diagnosis, I thought to myself as I scuttled back to the Speaker’s Room after a presentation on the second day. But then neither did the majority of delegates, I reminded myself.  It was, after all, a Professional Conference, aimed at those who work with and support those with autism; a delegation from my son’s NAS residential home were attending the conference, for example.

The NAS annual conference provides an opportunity for autism professionals to reflect on their knowledge and skills, review new resources and network with colleagues in other settings.  Why, you could ask, should adjustments be made at a Professional Conference where the target audience are not (typically) autistic?  Well, yes.  Except that the NAS  (quite rightly) prides itself on making space for autistic voices. These were much in evidence at the conference; I probably heard more autistic than neurotypical voices, certainly from the floor and in the social space.  This is a good thing but, I reflected after the conference, it has implications…

*

Soon after I returned from the conference a friend told me how, meeting a new group of people for the first time, she had taken the hand of a man to shake it in greeting. But, she cringed, it turned out he wasn’t actually offering his hand:  “imagine how embarrassed I felt”, she said to me.  I could, I reassured her;  I had been equally embarrassed not to take a hand that was offered to me at an event at the NAS conference.  The hand I failed to shake belonged to someone who identifies as autistic and (I realised later when she confronted me about it) it had mattered to her that I hadn’t returned that handshake.  “I hadn’t meant to offend”, I told my friend. “Like you, I just misread the signals.”

Why was that I wondered? My undiagnosed autism or my neurotypicality?  Or perhaps simply because hand shaking  occupies an increasingly blurred space socially with many of us unclear of the rules?  And there is no agreement about the meaning of such behaviour either. While I may have upset the woman whose hand I failed to shake, not everyone would have shared her reaction.  This was brought home to me when a woman sitting next to me at dinner the next night told me that there was, apparently, someone at the conference who doesn’t shake hands.  “Isn’t it marvellous”,  the woman said to me, “that they feel able to say this?”  She seemed to enjoy the idea so much I didn’t have the heart to tell her that it was me and that, actually, I did shake hands really.

I don’t know whether this is an example of being ‘a neurotypical in autistic space’ or ‘an autistic in neurotypical space’ but I recall it as an incident which made me think about the challenges of being truly inclusive and enabling everyone to feel comfortable in a social space.  I have no idea whether autistic delegates felt any more comfortable with the social space than I did but I’m guessing that at least some of them may have shared my neurotypical discomfort.

*

What I quickly realised at the conference, however, was that autistic delegates were made very uncomfortable (understandably) by presentations which adopted a medical approach to autism and by the use of terminology which is not that preferred by the ‘autistic community’. One presenter came in for a particularly rough ride. He was presenting research from a project which drew on  development psychology and which was not framed within the discourse of a social model of disability. A number of articulate autistic delegates challenged the project’s attempt to scientifically classify different ‘autisms’ and the medical language which the presenter used. While I understood the objections of autistic delegates, I didn’t share the view that the presentation should not have been included in the Conference programme; on the contrary, I welcomed the challenge and an opportunity to think differently.

This was a couple of years ago now and I’m conscious that my recall may be blurred and even distorted by time. But the gist of the presenter’s argument (as I understood it) was that if we  can clinically identify different ‘autisms’, with differing profiles and needs, then we can plan more efficacious interventions.  This is an argument I find attractive; although I understand the ways in which Dylan’s autism links him with others who share his diagnosis, I am conscious of the way in which his co-morbid condition (intellectual disability) means his experience and needs are significantly different. If the clinical identification of different ‘autisms’ allows individual needs to be met isn’t that ‘a good thing’?

Well, not necessarily. The problem with identifying different ‘types’ of anything is that it divides people; the larger population is divided into sub-groups which do not carry the same weight as they did together and, inevitably, competition emerges between the groups for resources and representation.  The attempt to support a sub-group by specifying their particular needs can thus undermine support in two ways; firstly, by the articulation of multiple and competing messages about the thing in general (‘autism’) and secondly through the emergence of hierarchies in relation to things in particular (the different ‘autisms’).

An example which the presenter gave struck a chord with me. He described how (in the US, where he is based) a group of autistic people without intellectual disability and with self-care skills and the potential for independence had initiated a campaign to close down the residential settings which had previously provided accommodation for autistic adults. The group had been well-organised, vocal and very effective in articulating their position in the community and on the media; their aim  was to challenge the concept of residential care and the discourse around such provision.  The presenter described how he had  challenged the campaigners:  ‘But the homes are not for you!’ The problem, the presenter explained, was that these autistic campaigners were undermining the availability of provision for other groups of autistic adults; for those  adults with co-morbid diagnoses who need additional care, residential living may be a good option.

The suggestion that different ‘autisms’ should be clinically classified did not go down well with autistic delegates at the conference because of the framing of the presentation within a model of disability which appeared at odds with the current discourse.  As the mother of an autistic son with additional needs, however, I could see the potential value in such sub-classification.  It is fantastic that autistic people who are capable of representing themselves are doing so but the problem with listening to some autistic voices is that others get lost. What are we going to do about the autistic people with intellectual disability who lack capacity and who don’t use speech to communicate? Without someone to advocate for them, they are not even in the conversation.  The idea that there is an ‘autistic community’  and that it speaks for all those with an autism diagnosis is, of course, a myth.

*

One of the best sessions I went to focused on language; a panel of ‘experts’ made position statements before a general question and answer session with the audience. The discussion was useful with deep attention paid to choices about person first and identity first language. The knotty issue of whether autism could ever be an ‘identity’ for someone with intellectual disability and who ‘lacks capacity’, however, was not tackled.  Nor was there a single mention of the difficulty posed by ‘learning disability’ as opposed to ‘intellectual disability’. As is perhaps clear from my own language choice, I prefer the term ‘intellectual disability’. This is because I find it a more exact way to describe Dylan, who is perfectly capable of learning and who is learning all the time; the fact that Dylan has not learned the same things as other people of his age is because he has a cognitive ‘impairment’ – a disability of the intellect – and not because he is unable to learn.

Although ‘intellectual disability’ is recognised terminology internationally, and used in many other countries (including the USA), in England we say ‘learning disability’. I make a real effort to use my preferred term of ‘intellectual disability’, and to apply this consistently, but it is very hard when other people don’t;  because language is about communication, for the sake of clarity I will sometimes adjust my own language so that I am understood by others. It occurred to me, at the conference, that if no one is talking about the language we use about people like Dylan, we are a very long way from bringing them respectfully into a respectful conversation.

I worry that autistic adults such as Dylan are not only absent from the conversation, but not even in the room.  While I was pleased to be invited to speak at the conference, and to describe my experience of supporting Dylan through the process of transition to adult care, there were no other sessions  at the conference which felt relevant to my life or to Dylan’s. The staff who had travelled down from Dylan’s residential home for the conference reported this was typical; ‘it’s not usually aimed at those with learning disabilities’, one of them told me.  An attempt had been made to acknowledge the diversity of interests at the conference through the organisation of sessions into different ‘streams’. I’m not convinced these worked, however; I found myself hankering after a ‘parents strand’ or a ‘Learning (sic) Disability’ strand so that I could find somebody who spoke my language and could understood my silence. Perhaps what is needed before we can find what unites us is a safe space to talk about our differences?

*

I intended to write this piece immediately after the conference; I have no idea why it has taken me so long to write, except that I find these issues challenging and my position is still evolving.  I’ve no doubt that the piece I am finishing today is a very different one to the one I would have written two years ago. What hasn’t changed, however, is the main impression I came away from the  conference with: that little attention is paid to those like Dylan who have intellectual disability as well as autism. Great leaps forward have been made for many autistic people in recent years, largely because of their own efforts and the fantastic contribution they have made to campaigning organisations, such as the National Autistic Society, through self-advocacy.  Part of me is heartened by this but I am also worried that the different interests of those who can’t self-advocate are lost in this process.

The NAS started life as a parents’ organisation and I imagine that, in the early days, most of the support it offered was to parents, such as myself, who needed to learn how to care for and support a child with autism and intellectual disability. The NAS is no longer a parents’ organisation, primarily, and this leaves a gap in provision.  As became clear to me at the conference, the NAS is not a professional organisation either (even though the annual event is billed as a ‘Professional Conference’). I’m not clear who the NAS is for; it  seems to be trying to be all things to all people but in the process is, perhaps, failing to meet all our needs.

The Book Hedgehog

In a previous post I lamented the departure of a member of staff who had coordinated the social enterprise activity at Dylan’s setting. During the recruitment process for a new social enterprise coordinator, the workshop and shop at the residential setting remained closed to members of the public and to residents.  This meant that there was a gap in Dylan’s daily schedule which had to be filled with alternative activities. Although staff did their best to keep Dylan purposefully occupied, he was more unsettled during this time and clearly missed his work in the shop.

In my post in December I described how, on the run up to Christmas, Dylan had been insistent that the shop be opened so that he could make the holly wreaths which he associated with that time of year.  I reflected:

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

I am very happy to report that a new social enterprise coordinator is now in post and that Dylan has resumed the ‘anchoring rhythm’ of his daily work in the shop. This seems to be going well. Since the shop re-opened Dylan has been more settled and has seemed generally happier.  As well as enjoying the rhythm and structure of working in the shop, it helps that Dylan knows the new coordinator; ‘J’ worked at the National Autistic Society school which Dylan attended so she is a familiar face. Not only does this mean that trust is already established, the continuity in terms of J’s knowledge of Dylan’s interests and skills is fantastic.

The arrival of J has provided an ideal opportunity to review Dylan’s work and to introduce new activities.  Since the social enterprise activity resumed Dylan has participated in a range of arts and crafts activities including candle making, paper printing and model making. He has also made ‘book hedgehogs’; these are ingenious creations, made by cutting the pages of a book. I am told that Dylan worked carefully and methodically at the hedgehogs; this is not something I would have expected Dylan to enjoy and reminds me (again) of the importance of keeping an open mind. As well as introducing Dylan to new activities, J is planning to continue the woodwork which Dylan enjoys so much.  She has identified some fantastic potential projects for Dylan and a new woodwork bench is due to be delivered.  Some new, and more accessible, qualifications are also planned.  Exciting times ahead for Dylan and the other residents  🙂

In my December post I drew a distinction between ‘consistency’ and ‘constancy’, suggesting Dylan might need the latter more than the former.  At the moment, serendipitously, Dylan seems to have both; the new coordinator provides Dylan with some consistency while the work offers him constancy.