The Physical And The Emotional

wp_20170101_008I’d been reflecting that I was finding it hard to move on; 18 months since Dylan had moved to residential care and I’d managed hardly any of the things I’d told myself I was looking forward to.  I wasn’t sure what I’d done with the extra time; in fact I’d written fewer poems, been to the cinema less often and swum hardly at all.

I seem to have spent a lot of time thinking about Dylan, I said to a friend. That’s understandable, she replied. You haven’t stopped caring full-time for Dylan emotionally just because you’re not taking care of him physically.

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wp_20170101_009So I’ve been thinking about the relationship between the physical and emotional labour of caring for Dylan. One of the things I was concerned about when Dylan moved to residential care was that I’d forget how to look after him.  I worried that I’d lose the rhythm of bathing and shaving him if I wasn’t doing it every day. I feared the habit of being alert might leave me; that I wouldn’t hear the change in his footsteps or sudden silence summoning me to check that all was well. I was relieved I no longer had to do all the caring single-handed but I envied those who had taken my place; the fruits of this labour would now be theirs.

And the rewards of physical caring, I came to realise, are rich indeed. In this blog post, written 29 days after Dylan moved to his residential setting, I reflected on the possibility that chores are a currency of care. If you have a disability that means  you can’t take care of your own needs, perhaps care-giving acts, such as laundering clothes, acquire emotional freight? In the aftermath of Dylan leaving home, I realised that the physicality of caring for him had been a language of love.

I have learned that we don’t forget how to care for someone physically if we no longer do it every day; the rhythm is as deep in my body’s memory as climbing the stairs or swimming a length of the pool. The challenge is not remembering how to care for a person we love but finding a way of sharing responsibility for this. Perhaps, as a long-term single parent, I am less used to this than others. I have asked myself whether I would find it easier to share Dylan’s care with others if I had had to negotiate this with another parent while Dylan was at home. As I’m sure I’ve reflected before, there is something limiting as well as liberating about having sole care.

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wp_20170101_010And although Dylan is 22 years old he does still need physical care; he has to be supported to wash, dress, eat and to access the activities which he enjoys.  Since Dylan moved to residential care his ‘care plan’ has developed to reflect minor changes in his support needs;  Dylan needs more help selecting appropriate clothes than staff realised, for example, but minimal supervision when organising his daypack.

Sometimes Dylan shows a new streak of independence. When I arrived to collect him from his residential setting at New Year he took off at high speed. Where is he going? I asked staff. They weren’t sure. A support worker followed him and returned with a smiling Dylan: He’d gone back to his bedroom, she explained, to fetch his water bottle.

I was absolutely delighted.  The water bottle was new –  a present from Santa – and I wasn’t sure whether or not it was something Dylan would use.  It turned out that in the week since Christmas Dylan had got into the habit of filling it up each day and taking it with him on daytime activities. I could tell the present was a success – the fact that Dylan had remembered it, when we had not, indicated this. As we drove to the seaside to celebrate the new year I reflected that this may well have been Dylan’s most successful Christmas present this year.

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wp_20170101_011I used to love listening to Alistair Cooke’s Letter from America on Radio 4. In one programme he introduced me to the term ‘not on my watch’, a plea which Cooke suggested American presidents made in relation to errors happening during their term of office. I have taken this phrase and applied it to my various responsibilities over the years, albeit for less-significant events. ‘If the course fails to recruit, let it not be on my watch’. ‘If the External Examiner isn’t happy, let it not be on my watch’. ‘If the children don’t have their lunch boxes, let it not be on my watch’…

The problem is, if you’re a single parent it usually is your watch. Sharing Dylan’s care gives the term more currency. I was thinking about this at new year because a breakdown in communication had meant Dylan didn’t have appropriate clothes for our planned trip. When I returned Dylan to his residential setting after the holiday I discovered this was because he is running low on trousers and needs to buy some more. I was feeling a bit grumbly about this as I settled Dylan back into his room after our trip to the seaside.  I’ll do an online order when I get home, I said, hopefully they’ll come fairly quickly.

I didn’t like that we hadn’t noticed Dylan needed to replace clothes. We need a better system for keeping track of Dylan’s things, I said.  And as I said that, something different but related came into my head.  Dylan, I said, Where’s your water bottle? What happened to your water bottle?  He looked at me, inscrutable. I’m pretty sure he knew what I was asking and what the implications were.  I thought he looked a little sad, but perhaps I imagined this. I checked Dylan’s bag and the car but there was no sign of it.  Staff must have worked hard to help Dylan build the water bottle into his routine and to look after it while he was out and about, I thought to myself. I’d been looking after Dylan for less than 24 hours and had managed to lose it. I’m so sorry, I said to the support worker. I’m afraid that was on my watch.

Later, when I looked at the photos from our trip, I could see the water bottle in the pocket of Dylan’s backpack while we were kite flying on the beach. Perhaps it had fallen out then.  Still, I telephoned the restaurant where we had eaten dinner afterwards. They hadn’t got it. Those Jack Wills things are really popular with the young folk, the manager said. Someone probably picked it up.

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wp_20170114_003Last month I noticed that Dylan’s railcard had expired so I took it home to renew. Last week I remembered that I hadn’t done it and went to get the expired card from the ‘to do’ tray in my study. No sign of it. That’s odd. I hunted around a bit. It hadn’t fallen on the floor. I hadn’t put it in a drawer. I couldn’t remember for certain when I’d last seen it.  So much for keeping better track of Dylan’s things, I thought to myself. Now what to do? I searched though old emails for a record but drew a blank. I would have to sort this out: I had promised Dylan a train journey in the new year.

Can I have your Filofax please, Dylan? I asked him this weekend.  Dylan loves his Filofax and carries it everywhere with him.  He isn’t so interested in the daily records that we fill in (though he realises that they are important to us I think) but he’s very attached to the passes, tickets and concessions cards which he keeps there. As he gave it to me the Filofax fell open at his travel cards and to my amazement there was his rail card, neatly filed in its place. Dylan must have seen the card in my study and taken it back – keeping track of his own things, taking responsibility. Rather than just remove it again, this time I took the time to explain why. Dylan probably keeps better tabs on things than we realise.

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As I reflected at the start of this post, I might not look after Dylan full-time but I spend a lot of time thinking about him.  This week, I’ve mostly been feeling bad about that water bottle. This is a small thing, I know, but I’ve been surprised at how much a lost water bottle has taught me about sharing Dylan’s care. So while Dylan and I were shopping for clothes yesterday I encouraged him into the shop where I had bought the original. Dylan seemed delighted and quickly picked out an identical replacement.  Hopefully I’ll be a bit better at keeping an eye on it this time, at least until Dylan has built it so firmly into his routine that he looks out for it himself.

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The photographs of Dylan flying his kite were taken in Cleethorpes on New Year’s Day

The Key

berrien-2016-047This week is the start of the academic year in England; pretty soon I will be deep in teaching. Although September no longer marks a transition point for Dylan I don’t think I will ever lose the anxiety that the end of summer brings for parents of children with disabilities. Each year I would live on my nerves through the first weeks of term, hoping desperately that all would be well.

It is three years, now, since Dylan left school. That was the hardest end of summer ever; my nerves burned for months. Happily, Dylan is settled at last and can live his life without such difficult jags of time; there are no sudden changes to the year’s rhythm, or inexplicable annual endings, in his residential setting. There is a reassuring continuity to Dylan’s life.

berrien-2016-046That’s not to say there aren’t changes; periodically something disrupts a routine or we deliberately introduce a new pattern to Dylan’s week. The last time I posted an update here, for example, I was anticipating taking a holiday without Dylan. I fretted terribly about the proposed trip, concerned that Dylan would be upset by my absence, but he was absolutely fine.

The key to this, I’m sure, was the extended timetable the care home staff made for Dylan. Instead of a weekly programme Dylan had a schedule which ran for the time I was away, ending with the day he would see me again. Dylan also had a weekly ‘overview’ schedule so that he could count the sleeps until his next visit home.  It didn’t seem to matter to Dylan that the gap between my visits was longer as long as he knew he would see me again.

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13901449_293441187680481_5004186233514663936_nI’m really glad that I took that ‘next step‘ during the summer. I had a fantastic week in Brittany and relaxed into the different pace of time without Dylan. Some of the things that my girlfriend and I did Dylan would also have enjoyed, but I was able to linger over them in a way that hasn’t been possible in the past: a Chagall exhibition in Landerneau; a beach day at Poul-Rodou; a folk festival in Plomodiern; cycling on the Isle de Batz. I returned from holiday this year refreshed instead of exhausted.

I missed Dylan of course. I kept his timetable close by me and checked it each day to see what he was doing. Initially I talked about him a lot. In fact on the drive down to Portsmouth for the ferry I must have come close to driving my friend away with my talk of Dylan. That journey was terrible for me. I was in such a state of anxiety about leaving Dylan I had made myself ill: my stomach was in knots and I had a dreadful sense of foreboding. My friend let me talk or not as I needed. Having her to support and encourage me was probably key to my being able to take the step at all.

wp_20160821_006I’m not sure how patient she would have been with me had I continued to talk so much about Dylan during the week. At some point in the Channel , however, I felt the knots in my stomach loosen and my anxiety lift. The sun was shining. We were on deck. I could sit and read Zola and drink tea, as I had dreamed of doing. And so the week continued; while we were in France I made only one phone call to Dylan’s care home and sent just one email.

The email was to ask staff what size Dylan’s head was.  The last time he and I were in Brittany he bought a Breton cap which he has worn constantly since and I wanted to get a new one for him, as a gift. He looked a bit puzzled when I gave it to him on my arrival home, as he did about the Breton biscuits which had mysteriously appeared in the house.  I think he pieced things together when he saw my photos from the holiday, however. Usually Dylan looks through photos from our trips with great interest but I’d describe his interest in my pictures from Brittany as ‘passing’. So mummy had been away without him.  He ate the biscuits. He put on his cap…

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berrien-2016-025Dylan’s care home manager told me she thought parents should take a holiday, even if it causes separation anxiety. I understand that now.  It is important for parents of disabled children and adults to have a complete break, not just from caring but from thinking about themselves as care-givers.  And, I remind myself, learning how to be apart from your adult child is part of learning how to be a parent. In this respect the experience of a parent of a disabled adult is not dissimilar to the experience of any parent;  I was also anxious about being far from my daughter when she lived in France.

There is  something about being away from a disabled child or adult which can provoke particular anxiety, however.  Their vulnerability and dependence on others means you need to have complete confidence in the people caring for your son or daughter.  I feel lucky that Dylan is finally living somewhere I can put my trust in others.  This week I’ve been thinking a lot about how we make such decisions.  How do we figure out levels of confidence in someone? Is there a science to it? Do ticks on a checklist really reassure us?  Parents of children with disabilities spend their lives making difficult decisions about care provision,  but how we make them – well, that’s something I’m not absolutely certain of.

As well as the checklist there is surely something magical to this? Call it intuition, if you will. Something in your guts, perhaps. An unknotting.  Sense of lightness. Je ne sais quoi.  I’ve written about this before; how some of the critical decisions I’ve made about Dylan’s care have been based on something entirely irrational magical. And this week it struck me that I’ve been relying on such seventh sense since Dylan was born. Because, as a single working parent, I had to go back to work when Dylan was only a few weeks old so needed to find someone to look after him. I was pretty clueless about the berrien-2016-088 process; I didn’t know how to care for babies and certainly had no system for figuring out how to choose a childminder. But someone very special came into our lives and I was able to get back to work – which some days meant working a distance from Dylan – with the complete confidence which comes from knowing you trust someone else to care for your child.

Blogs can be wonderful can’t they? I was so thrilled to find a message on mine last week from Dylan’s first childminder 🙂 I moved away from the area quite soon after Dylan was born but Tan has remained a precious memory. She was a key person, perhaps, because she made my first difficult separation from Dylan not just possible but positive. I think that is probably also an accurate description of my experience this summer.

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berrien-2016-153The thing about key people is that they tend to be transitory:  children outgrow childminders;  parents move away; friends move on.  I can add something else now:  care workers get promoted.  Dylan’s key worker will be moving onto a new role next month so one of the things we will be discussing at his annual review this week is her replacement. E has been a fantastic key worker; she has developed a great relationship  with Dylan and has been instrumental in developing critical aspects of his care, particularly around communication and behaviour support. Although I was sad to hear Dylan would be losing her as his key worker, I can’t say I was surprised. Key people are special people and if they are young,  gifted and ambitious they inevitably get promoted 🙂   The only question in my mind had been when and to where she would move.

Happily, the promotion is within the organisation so Dylan will still have occasional contact with E. I am telling myself that Dylan was lucky to have her as his key worker during his first year in a residential home; E has helped him to settle in and created a system of care around Dylan which should ensure continuity. As the message from Dylan’s first childminder reminds me, we keep people in our hearts and minds long after they have moved on: I’m sure Dylan will not forget.

One of the many things I love about Dylan is his capacity to form deep  relationships.  He has his own magical system for deciding whether to trust someone; I’ve seen Dylan reject some people entirely while embracing others with utter loyalty and commitment.  The transparency of Dylan’s affections means I am confident his ‘voice’ will be heard in the process of selecting a new key worker.

berrien-2016-104There are, of course, no promotion opportunities for parents; it is a role for life, with no possibility of moves up, down or sideways.  While that means there is no escaping the temporary anxiety of being far from your child, from time to time, it also means you are their continuity; the birth rock on which their whole life pivots. So although I don’t care for Dylan on a daily basis now, and am no longer the only person who knows how to do this, I am the one with the long view, holding his narrative together. That, I tell myself, is a privileged position to be in.

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A final key is for my daughter. She will turn 21 this week, a birthday we used to refer to as the  ‘key to the door’.  So this September I’m making wishes for both my children to walk  happily through their newly-opening doors …

 

Except for the photo of Dylan (looking uncertain in his Breton cap) the photographs were taken in Brittany in August.

The Next Step

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

wishing you a safe and happy summer…

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

Small Steps Back, Big Leaps Forward

Picture1When I looked back in my diary last weekend I discovered it was exactly a year since Dylan went for his first night’s respite at the house where he now lives. Although he had spent occasional nights there during his time at a nearby National Autistic Society school, Dylan hadn’t had any contact with the setting since his transition to adult services. An escalation in ‘challenging behaviour’ after Dylan left school meant I had been unable to find a respite provider willing to accommodate him.  As Dylan had not therefore spent any time away from home for months,  it was with a mix of relief and trepidation that I dropped him off for an overnight stay a year ago.

I had spent over a year trying to identify a specialist provider able to support Dylan and after months of frustration and disappointment it seemed I had finally found the perfect place.  This felt like the last chance saloon though.  What if something went wrong and the key to the golden gate was withdrawn?  Reading last year’s diary entry reminded me of just how anxious I had been. I seem to have had two main concerns: whether staff would be able to keep themselves as well as Dylan safe if there was an incident and the potential  impact of the trial on Dylan’s proposed residential place.

If it is challenging and they see the full extent of D’s behaviours there could be a high risk situation… someone could get hurt and they could say  – I’m so sorry but we can’t possibly accommodate Dylan after all – we didn’t realise the extent of the CB.  So I need him to be good (but not too good). Well: breathe now, breathe. Try to relax. This is what I’ve been desperate for and needing. I have until tomorrow. Only tomorrow!!

Needless to say, that first overnight stay, and subsequent visits, went fine. There were some incidents but nothing the staff couldn’t handle or to cause concern. Dylan was just the sort of young man, the manager told me, their provision was aimed at. So he was  offered a place at the house and, as I commented to staff when I collected him last Saturday, his progress has been remarkable.  Dylan has settled well; he has developed some great relationships and seems to thoroughly enjoy his programme of activities. Although there are still incidents from time to time, Dylan’s anxiety levels are significantly reduced thanks to the specialist support he receives.

Dylan is doing so well in fact that he went away with staff on holiday at the beginning of this week. ‘I can hardly believe’, I said as I handed over Dylan’s trundle case at the weekend, ‘that it is only a year since Dylan’s first sleepover’.  If someone had told me, then, that just 12 months later Dylan would be doing this I would perhaps have breathed more easily. As Dylan hasn’t been on holiday without me before this is a significant step for him. It represents a pretty big leap for me too though. At the weekend I realised I had left Dylan’s suitcase for staff to pack without feeling the need to also provide a list of instructions and details of what Dylan should pack. This  didn’t so much as cross my mind:  I trust the staff to care for Dylan and accept I am no longer the only one who knows what he needs.

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89a02f168afcaab595550196bc3871bbThe Log Cabin on the coast which Dylan’s care provider have rented is being shared across the week by the residents at the home. The young people take turns to have a couple of days away, one by themselves and one shared with another resident; Dylan was first to go on Monday morning and he was joined  the next day by another young man who took Dylan’s place in the cabin on Tuesday night.  Apparently Dylan had a lovely time and thoroughly enjoyed himself.

I say ‘apparently’ because I am, of course, dependent on reports from others. I did glimpse Dylan, briefly, on his return from the short break as ‘Facetime with mum’ was on his programme that evening. Facetime, however, hasn’t been very popular with Dylan recently.  The days of kissing the screen appear to be over.  In the last couple of weeks Dylan has clutched his ears, closed his eyes, moaned softly and walked out of view during our calls.  ‘We might want to step back a bit with Facetime’, I suggested to the activities coordinator: ‘Dylan doesn’t seem very comfortable’.

Parents and professionals will perhaps recognise this pattern of engagement and disengagement; Dylan quite often appears OK with something initially but then decides it’s not for him after all (and vice versa). This delayed reaction is typical for Dylan who, like many autistic children and adults, needs extra processing time for new experiences. Consequently, it can take a while for Dylan’s authentic response to a situation or activity to become clear. I should know this by now; my rejoicing about Facetime was almost certainly premature.

51b5dd798d9adbf39a1b93ded520d811So when I got an email last week asking whether I thought Dylan would like to join an early evening running group, and if so would I mind rearranging our Facetime session, I jumped at the suggestion.  Physical exercise is one of the best ways of involving Dylan in community activities and I loved the idea he could take part in a fun run with staff from the home and members of the public. That would be great, I replied, and no problem at all about the Facetime session.

When staff tried to do a ‘Programme Change’ , however, Dylan wasn’t happy. He pointed repeatedly to the Facetime icon, insisting it be reinstated. I was surprised by this, having convinced myself he wasn’t enjoying the sessions. Maybe in his own way he looked forward to them? Had I been too quick to make assumptions? How could I be sure Dylan’s behaviour meant he didn’t enjoy Facetime? So we decided to leave Dylan’s programme as it was and schedule the running to start this week instead. Come the Facetime session, however, it was a struggle to stay positive; you would never have guessed, from Dylan’s reaction, that he wanted it on his schedule.

c15611269b52da129a0117ce6b4065ddAs Facetime is fundamentally about communication maybe it is no surprise that Dylan should feel anxious. Although it is visual, Facetime still requires direct interaction in that it demands a face and assumes speech.  For Dylan, for whom eye contact and voices provoke anxiety, this is not ideal.  During one session, realising that Dylan was uncomfortable, I fell silent and started making simple actions: putting my tongue out, touching my nose, pulling a funny face. After a while I had Dylan’s attention.  Gradually he started to copy some of my actions. I heard Dylan’s support worker laughing at us (in a nice way). It felt a bit weird but it was probably the most relaxed I’ve seen Dylan on Facetime recently.

So I haven’t wanted to give up on  Facetime too quickly in case it is something we only need to tweak. Maybe we are scheduling it at an irritating time of day when Dylan is wanting to do something else? Or perhaps we need to move it to another area of the home where Dylan is less distracted? Maybe Dylan and I will develop a silent Facetime language. I would be sorry to lose Facetime as I find it more comfortable than the telephone. At the moment, therefore,  I am asking whoever is supporting Dylan to chat to me, rather than try to involve Dylan – perhaps watching from the sidelines will be enabling for Dylan. I’m not sure what will happen next.  Perhaps we’ll knock it on the head for a while. It feels like a step back, but only a small one.  And who knows – the running group could be a big stride forward.

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‘I have to accept that there will be setbacks’, I told myself on Sunday as I sat alone in a cafe over a bowl of soup, wondering what to do with my unexpected free time.  The battery on my phone had inconveniently died so I couldn’t phone a friend to ask if I could visit or we could meet.  I tried to stay positive while I re-thought the rest of my day. Because, for the first time in the year since Dylan had moved to a residential home, which only the previous morning I had been rejoicing, I had telephoned staff to ask if I could return him earlier than scheduled.

9235c2ffd9004f1f6c76b96e9579c75bThere had been an incident and I had decided it probably best to abandon our planned activity.  So I had dropped Dylan off at the home before lunch on Sunday, rather than at the end of the day, and was pondering my next move from a nearby cafe. I’d probably been undone by my own hubris that morning, I reflected. I had been too relaxed.  I had taken my eye off the ball. I had forgotten that with Dylan I must be vigilant and prepared for the unexpected. It was good to be reminded of this, I told myself –  and lucky that it had been in such a safe environment.

I had taken Dylan to an Autism-Friendly screening of Angry Birds at an out of town multi-screen entertainment centre which Dylan has been to numerous times.  Dylan doesn’t need to go to inclusive screenings any more as he is a seasoned cinema goer and understands the routine. I like to support AF initiatives, however, and as the film was at a convenient time and location I had suggested to Dylan that we go before lunch out and an afternoon walk.

I had a relaxed swagger about me as I helped Dylan to use his CEA card to buy his ticket and queue for his salty popcorn and water. I bought a cup of coffee. I was aware of parents of young autistic children doing what I had needed to do with Dylan years ago: encouraging them into line; helping them to wait and to choose appropriately; supporting them through terrors and tears and mini meltdowns; picking up and carrying or patiently waiting. I probably let myself feel glad that my young man was quietly waiting to be served, behaving beautifully.

cd4c980c1b4e1978ed7fc085e53e708aAnd then it kicked off.  The film wasn’t in the cinema Dylan wanted it to be in (up the escalator). He became an Angry Bird. I saw, in the split second before Dylan did it, what was about to happen: backpack off, frog-jump as high as he could manage, popcorn falling everywhere, like snow, and then Dylan squirming in it, on the floor, yelling in anger.  The staff had clearly had autism awareness training and were prepared; they appeared with brushes and pans and a ‘hazard’ sign, asked me whether it had been sweet or salty (for  a replacement) and what they could best do to support me.

I said that Dylan could sweep it up himself – that it was important that he did – and that I wasn’t sure I wanted him to have replacement popcorn.  So, to the staff’s surprise, I got Dylan to help them clear up. Was there another way into the cinema I wondered? Could we go up the escalator and enter through a back door? But there wasn’t. I wasn’t convinced that I was going to get Dylan into the cinema but thought I would try again and agreed he could have more popcorn. When I told Dylan again, however, that the film was on the ground floor, he prepared to repeat the popcorn party trick. At the very  moment he bent his knees to propel himself into the air I slipped the carton out of his fingers. ‘I think we’ll leave’, I said to the member of staff, as  I escorted Dylan from the cinema, shouting and waving his arms, still pointing to the escalator.

Should I have let him go upstairs? Maybe. Perhaps he only wanted to ride it and would have come back downstairs for the film. I doubt it though. I suspect more likely is that he had a particular auditorium  in mind. I decided I couldn’t take the risk of letting Dylan head upstairs to find myself with a more difficult situation to manage on the mezzanine. Leaving the cinema, however, had made me feel sad;  going to a film together is something we have done for years and a shared activity I have loved. I couldn’t guarantee a film would be showing in a particular auditorium for Dylan.  Were our cinema trips in jeopardy? Was this something else to lose?

WP_20160607_005When I dropped Dylan off at his residential home a member of staff told me I had done exactly as they would by encouraging Dylan to sweep up the mess and then changing the activity. And, she suggested, I might not have to give up cinema trips altogether, just avoid the multi-screen  for a while. Still, I sat staring into my soup, feeling disappointed not just about the day but the  loss of future days. How could I possibly take Dylan to the cinema again, I wondered? It hadn’t occurred to me before that a trip to the cinema might be as much about the auditorium and environment as the film itself for Dylan. I searched through all my cinema memories, asking myself how many times we had been upstairs and how many downstairs. Which films had we watched in which auditorium? I knew Dylan usually headed for particular seats. Now I realised that this varied by auditorium; in one cinema it is row F on the far right, in another it is row A on the far left and in another it is the very back row, far left. Perhaps that morning Dylan had wanted to sit on a particular seat rather than in a particular auditorium?

So I sat turning things over, trying to figure them out. But then I remembered my old diary entry. Instead of staring into my soup, I told myself, I should be enjoying the time I had to myself. A year ago I would have done anything for a bit of space on a Sunday. In the scale of things this was a small step back, after all, not a significant loss.  I had a book of poems in my bag, waiting to be read. And then I would go and look for that laburnum tree I had promised myself…

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The photographs of Dylan were taken by staff during his short break this week. I am really enjoying the laburnum tree which I planted outside my back door.

 

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

Things To Celebrate

March 2016 002My presentation at last week’s National Autistic Society conference seemed to go well I’m pleased to say. I will share a summary of it, and some reflections on the conference more generally, very soon. In the meantime I have two pieces of news to share.

Firstly, I am delighted to report that Dylan started an ASDAN qualification in Horticulture yesterday. Isn’t that marvellous? I have mentioned, in previous posts, how much Dylan enjoys working with the activities coordinator in the social enterprise shop at his  home. This has become a very positive aspect of Dylan’s programme and it’s fantastic that the work Dylan is doing is being recognised in this way.

In my conference presentation last week I referred to my attempts, when Dylan left school, to secure post-19 education provision for him. It seemed to me that, in my area at least, the developing agenda around community-based autism services had created a situation which was working well for some individuals but had nothing to offer to others. This seemed, in general, to divide around what is sometimes referred to as ‘high and low functioning’ adults (terms I dislike).

So many people, at the time, were of the view that education was not possible, or even appropriate, given Dylan’s intellectual disability and limited communication. I should focus instead, I was told, on identifying social care provision for Dylan. By the time the Local Authority had accepted their obligation to provide education services to autistic adults with complex needs, Dylan was too unsettled to access such provision. It is ironic, perhaps, that it is through a residential setting  – a model of provision which some people argue should be phased out – that Dylan has finally been able to access the education which is appropriate to his needs and from which he can benefit.

I have always argued that the challenge, in the aftermath of the Winterbourne View scandal, is to ensure residential settings for adults with disabilities are excellent rather than to close them down. While community-based support will be an infinitely better option than residential care for some adults (providing it is properly resourced) there will always be others for whom residential services are essential. Our task, surely, is to identify what the key factors are in the development of excellence in relation to residential settings for autistic adults?

When parents and relatives visit a prospective home for autistic adults they try to make careful judgements about the setting. Is this a safe place? Is it a happy home? Are the residents purposefully engaged and well-supported by trained and caring staff? Such judgements can be difficult to make, however, and parents receive little support with the decision. We do our best but, inevitably, worry about whether this will be good enough.

2Happily I’ve never doubted that the home I eventually chose for Dylan was the best that could be. Even so, it was fantastic to receive independent confirmation of this at the weekend: Dylan’s home, I am delighted to say, has been judged ‘outstanding’ in a CQC Inspection. It’s a wonderful acknowledgment of the time, effort and care the staff and management invest in Dylan and the other young people at the home.

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The pictures of Dylan are from the Home’s February newsletter to parents. They show Dylan working on the firebrick stand he has been making as part of his woodwork project.

 

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