At-Ankle Support

wp_20170205_013As I’ve mentioned previously, Dylan has a tendency to jump. When I say jump I really mean bounce. Or perhaps pogo is a more accurate description. Because Dylan’s jumping seems not to be to touch the sky (as Higashida explains this behaviour in The Reason I Jump) but to relieve extreme anxiety. There are happy exceptions, but Dylan’s jumping is mostly a sign that something in his world has gone wrong.

I’ve always been a little bit scared of Dylan’s jumping. It doesn’t sound threatening, I know. Jump.  Quite Innocuous really –  fun and friendly, even. But when someone is pounding up and down, over and over, higher and higher, bending at the knees to increase height and acceleration – well, in a restricted indoor space it is intimidating and outdoors, in a high risk environment, it can be terrifying (I will never forget a cliff top episode that nearly ended in tragedy).

Dylan’s jumping has been less of a concern since he moved to a specialised setting where his anxieties have reduced. When he needs to jump he has staff to support him and a safe environment. The rooms at the residential setting are larger than an average home environment and there is space for Dylan to jump in order to manage his anxiety. Because, as Dylan’s Behaviour Support Coordinator stresses, the behaviour is functional for Dylan; if his anxiety escalates then the sensory experience of rhythmic leaping into the air is something which Dylan seems to find helpful.

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wp_20170205_014But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while  jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .

We have become so used to exchanging images by email it’s easy to forget that this is still a recent development; a few years ago I would have had to drive to Dylan’s care home to see the situation for myself. Without doubt, new technologies are helpful in supporting communication between a residential setting and family home and thus in promoting an active partnership around care. Daily phone calls and email updates not only reassured me about Dylan’s injury, they enabled me to take an active part in discussions about how to support him with it.

Helping Dylan to manage pain and encourage healing is challenging as Dylan won’t take oral medicines and will tolerate only very limited interventions. Furthermore, Dylan is a very active young man who is constantly on-the-go. The ankle injury was therefore significant in that ‘resting it’ was not realistic; sitting quietly with his feet up was not something Dylan could understand or accept.  The doctor, however, advised that there were benefits to keeping an ankle moving after such an injury as some mobility promotes the healing process. It was really therefore a question of degree:  ice-skating on Friday would have to be cancelled but a brief walk around a favourite museum on Wednesday would be OK.

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wp_20170205_015Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.

Although I was sorry that Dylan had to lose his fabulous first key worker recently, as E’s new role in the organisation is regional Behaviour Support Coordinator, Dylan still gets to benefit from her expertise. So when I asked for a review of Dylan’s jumping after the incident it was to E that Dylan was referred. The incident analysis which she conducted suggested patterns to Dylan’s jumping. This particular incident, for example, seems to have occurred when Dylan became frustrated about his swimming towel not being folded in a particular way. A newish member of staff wasn’t aware of the importance of this to Dylan who became frustrated at his inability to communicate how he wanted the towel folded. Tracking through Dylan’s records revealed other incidents when Dylan had become frustrated by a routine not being followed.

When Dylan chooses a jacket potato for lunch, for example, it is very important that two portions of butter are placed on the side of the plate (so he can put the butter on himself) rather than the potato being served with butter already added. Such details may seem minor to us but they can mean the difference between happiness and despair to Dylan. The thing is, E noted, she had got to know Dylan so well during her time as his key worker that she instinctively built Dylan’s routines into her care and modelled these to other staff with whom she was working.  Furthermore, members of staff who know Dylan well are familiar with the signs that he might be about to bounce and are often able to react in order to head off the jumping. There had, however, been a number of staff changes and some of this ‘craft knowledge’ of Dylan’s routines had been lost.

While Dylan’s basic care routines are recorded in his care plan there was perhaps a need, E suggested, to produce more detailed written guidance about Dylan’s context-specific routines. As the review of Dylan’s records had suggested that a significant number of Dylan’s jumping incidents happened around food choices, E suggested that Dylan’s communication book be enhanced so that he is more aware of what food options are likely to be available on a particular day. This might help Dylan to manage his expectations around meals, particularly in the community.

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wp_20170205_012Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication.   There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely.  As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.

Nonetheless, reviewing and developing the symbols we use with Dylan has to be worth our constant time and attention. E has some other ideas for communication which we hope will empower Dylan. She has suggested introducing a key ring system, for example, to promote independence.  Again, there is nothing radical about this  – I tried using a key ring with Dylan when he was around seven years old. But the point is to go at Dylan’s pace and to find methods with which he’s comfortable; some of the strategies I tried with Dylan as a child, without success, may be more effective now.

While some autistic children and adults are confident users of communication software, this hasn’t been something which has worked for Dylan so far. I suspect this is because of Dylan’s dual diagnosis of intellectual disability and autism, a combination which impacts significantly on communication and thus on Dylan’s life more generally.  As Dylan’s ankle injury demonstrates, this can affect physical health as well as emotional well-being.

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wp_20170205_011I’ve written previously about the importance of promoting positive contact with the health services for autistic children and adults with intellectual disability.  Happily, the annual ‘Cardiff Check’ seems to have borne fruit in that Dylan seems comfortable visiting doctor’s surgeries and hospitals, although he won’t tolerate much in the way of intervention.  Coincidentally, Dylan’s annual review was scheduled  last week so the GP was able to check his ankle during the appointment. It had been, the doctor suggested, ‘a very bad sprain’ but seemed to be healing nicely and he had no concerns.

My concerns that Dylan might damage his injured ankle by bouncing on it have, happily, not come to pass.  ‘I absolutely take your point about improving communication’, I had said to E after Dylan’s accident, ‘but what if Dylan does start to bounce? We need to be able to redirect him, at least while his ankle is injured’. E suggested that we encourage Dylan to make use of his exercise ball at such times; seated-bouncing on his ball, she explained, would deliver the rhythmic movement which Dylan appears to benefit from but the ball would take the impact of his weight rather than the floor. Staff could use a ‘Stop’ card with Dylan at the onset of bouncing and re-direct him to the exercise ball.  Longer term, the aim would be for Dylan to develop the habit of seated-bouncing rather than his standing leaps.

While Dylan’s ankle has been sore he has been happy to make more use of the exercise ball. Dylan uses such a ball as part of a morning exercise routine so it is a familiar piece of kit. Although this is not something which can be used outside the home, it feels positive as a strategy for promoting emotional self-regulation. The hope is that once Dylan has accepted re-direction to the exercise ball he will use it voluntarily, instead of jumping.  As he learns to manage his anxiety, staff will support Dylan to use other resources, such as his weighted blanket and a ‘sensory box’. This sensory approach makes sense to me; I bought an exercise ball for Dylan to use at home and I must confess to having bounced on it myself, one evening last week, after a particularly stressful day 🙂 As ever, there are self-care lessons to be learned from caring for Dylan.

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.

 

Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

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IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

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When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

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The piece I had planned to write (which I referred to in my previous post) is coming soon…

The Last Lap And The Car Wash

dylan meltI think this might be the last lap. At least I hope so: I’m not sure I have any reserves left for what has been a two year marathon. Since Dylan left school it has been a frustrating time of dead ends and disappointments. I have coped this far but am exhausted; if the finishing post moves one more time I doubt I could manage another lap.

I’ve been enjoying writing some general pieces about living with autism recently. Such reflections keep my eyes on the skies instead of on the grubbing detail of the road. With things in the balance this week, however, I thought it a good time to record what is hopefully the last bit of the circuit. Who knows whether these reflections will indeed turn out to be my log from the home strait but hopefully they will be illuminating.

Replay

2014-08-05 17.24.48If you’ve been following Dylan’s story then you might recall that my original battle, after he left school, was to secure continuing education. Dylan had been happy at school and was a settled young man, calm and with no ‘behaviours’ other than a liking for letting off fire extinguishers and smashing light bulbs. Initially Dylan wasn’t provided with any post-19 education and the social care funding he was offered for day care wasn’t sufficient to cover more than three days a week. When I won a legal challenge against my local council, Dylan was given a patchwork of provision while an appropriate education setting was developed in the city where we live.

For the year after he left school Dylan appeared to cope with part-time care which lacked consistency and routine and which wasn’t autism-specific. I reduced my working hours so that I could support Dylan as much as possible. It was messy and difficult. I felt stressed from one day to the next, wondering how I would juggle different settings and collection times and key workers. So it’s not surprising, really, that by the end of that first year Dylan started to show signs of distress.

The ‘challenging behaviours’ started last June. Some of my posts in the last year have described my search for explanations and answers. With incidents happening daily I took Dylan for neurological and psychological investigation, attended intensive support services, removed sugar from his diet, banned films with ‘separation narratives’ and asked for help from the ‘sex nurse’ (she probably has a different title but that’s how I recorded appointments with her in my diary). All these roads, it turned out, led to what was likely to be anxiety: the best we could do was increase the structure and consistency in Dylan’s care and adjust his activities.

In the last 12 months I have moved from utter disbelief at the changes in Dylan to a realisation that if you are severely autistic with severe learning disabilities and very few strategies for communication, and if your life changes profoundly so that things which you rely on to keep you comfortable – structure, routine, a calm environment and familiar people – suddenly disappear (as happened when Dylan left school) – well, it isn’t surprising is it? Anxiety can provoke feelings of frustration and anger in any of us. In the context of Dylan’s disabilities, his anxiety must some days feel scary indeed.

U-turns, false starts and golden gates

2014-08-05 18.44.12Unfortunately for Dylan the changes in his behaviour triggered further changes. Although one care setting has provided on-going support, other providers (including Dylan’s respite setting) felt unable to, given the changes in Dylan’s behaviour. Following a separate battle for funding, I had finally secured health care support for Dylan; the challenge, however, was to identify a setting with the necessary expertise to care for him.

A number of my recent posts have described the agony and confusion of trying to choose somewhere to live for an adult with Dylan’s profile of need. There are few such settings. Where they exist they are rarely local. Because of their specification (generous space, adapted buildings, small groups, high staff ratios and individualised programmes) they tend to be expensive. Factoring in economic and practical considerations as well as the desire to keep Dylan nearby, it is not surprising that finding somewhere for Dylan would be so difficult.

And then there are the curved balls that can come spinning. I have described elsewhere the way I pulled a u-turn when I lost my confidence (and my bearings) for a setting which Dylan was due to move into after Christmas. It was brave but possibly foolhardy, I was told, to pull out of a perfectly good placement. So I was relieved to quickly find a replacement which seemed just as good and was closer to home. As I recorded subsequently, however, the plan for Dylan to move there after Easter had to be abandoned following a safeguarding issue. I had let myself believe in that placement; getting a phone call to say we would have to abandon felt like a false start (or finish).

I hardly dare write that I think I can finally see Golden Gates glinting up ahead. Like other writers I observe the rule of not talking about a poem until I’ve written it in case I lose the magic. Perhaps I’ll apply the same rule to Golden Gates so as not to break the spell. Besides, even if there is a gilded tomorrow, today there is still this view from the road.

The road

2014-08-06 16.46.52It’s not an easy road to be on if you are in crisis. Even when a setting has been identified the process of assessment and transition takes time. Something that has made these months particularly hard is the loss of Dylan’s respite. At the point at which I was in need of more support I got less. In fact I got nothing. I have written elsewhere about the contribution which respite plays to the lives of carers; having been without it for nearly six months I can confirm this support is vital.

My last night off was 18th December. Since then I have been on duty every weekday from 4pm to 9am and every weekend from 4pm on Friday to 9am on Monday. I have not had a break during this time; I have not been able to go out or even, given Dylan’s anxiety, to have visitors. This period, of course, includes Christmas and other public holidays and celebrations. As well as having an impact on my ability to work (during this time I have had to reduce my hours and resign a management role) I have been obliged to turn down opportunities to perform at events (as a poet) and to attend social activities.

I don’t mean to sound complaining. I’m not. I accept all of the above as the price of caring for someone who is my responsibility and my world. But to be a carer I need to stay well and healthy which means being able to rest and recuperate. I haven’t been able to do that; I’ve found that trying to rest during the day is no replacement for the benefits which come from having a break from caring overnight. For me they are these: not having to bathe and put Dylan to bed in the evening then stay awake until he is settled; not having to be alert through the night in case I am needed; not having to get up early enough to juggle my own self care with waking Dylan in time to bathe and shave [I often skip this stage in truth – I have a lot of sympathy with men on this one] and dress and feed him before it is time for his bus; not having to pace the house waiting for the bus and willing it to arrive in time for me to get to work.

Gardens, mud and dirt

dylanmelt2Dylan’s anxiety has been acute in the last few weeks and his aggressive behaviour has escalated. I have gone on trying to identify triggers but can’t always predict or head off incidents. I am no match for Dylan physically (21 and more than six foot tall, fit and strong) and after being hurt on a number of occasions I have learned to prioritise keeping myself safe. Recently, I have spent a lot of time in the garden where I go, now, to sit and wait until Dylan has calmed down. Sometimes it is five minutes, sometimes 50. Sometimes I am barefoot, sometimes better prepared. Sometimes it is fine, sometimes raining. Sometimes it is light, sometimes dark. Always I wait with my heart in my mouth for it to be over, praying that Dylan doesn’t hurt himself.

I am better at keeping myself safe than I was; I have learned to make judgements about when I can intervene safely and when I can’t. I have agreed strategies with Dylan’s social worker such as keeping my mobile phone with me and when to call for help (I haven’t so far). Clearly it would be better if Dylan could be helped not to feel so frustrated but for that he needs specialist care and support in an environment with the space he needs. I don’t believe, however, that there is a magic formula which will eradicate Dylan’s anxiety; I suspect he may be prone to it through these difficult early adult years. And because life with Dylan can be so unpredictable (and I must stress that it isn’t like this all the time – we have wonderful joy-filled days too) what he especially needs is more than me.

Dylan and I have always had an active life and I’ve continued these activities at weekends. He needs this: he’s a fit and active young man. With incidents happening increasingly often, however, I have recently found myself in compromising situations where I have been hurt or Dylan is at risk (sometimes both) away from home, in vulnerable locations or public space. Three times I have fallen in the last few weeks when trying to catch or restrain Dylan (without adequate training) in order to keep him safe. One incident a couple of weeks ago left me terrified by the combination of Dylan in violent meltdown, an unleashed dog (with slow-to-act owner), bleeding ear (mine) and fast approaching road.

I’m not sure why Dylan was out of control that day; we were in a familiar valley which we have walked many times. Dylan loves to be near water but it can sometimes lead him into a trance-like state which in turn triggers a violent outburst. This  may have been what happened on that Sunday afternoon walk. It was a wake-up call and a turning point for me; I managed to get Dylan back to the car, albeit muddy and bloody, and the next morning I phoned his social worker.

The car wash

33524547-car-wash-with-soapIt took quite a lot for me to admit that I couldn’t keep Dylan safe anymore. Some people have suggested that I might get more support with Dylan if I didn’t appear to cope so well. You appear too competent for your own good, one friend told me. Well I was perfectly happy to admit, now, that I wasn’t. I couldn’t manage weekends alone anymore, I told Dylan’s social worker. Neither Dylan nor I were safe. For Dylan’s well-being and my own safety, I said, if I can’t access some support at weekends then I shall just drive away. I shall leave. I could hardly believe what I heard my mouth say. I wasn’t even aware that I had thought it. I certainly wasn’t sure I could ever do it. But in the silence that followed my announcement, I thought that this must be how breaking point feels.

We explored various options in the aftermath of that incident but in the timescales it wasn’t possible to put together an acceptable alternative for the following weekend (i.e. last weekend). In the end, therefore, I decided to support Dylan myself but agreed that I wouldn’t  access the community with him and that I would put some simple procedures in place to stay safe at home. I approached last weekend with anxiety and trepidation. Fortunately the weather wasn’t remarkable – it’s easier to stay home, somehow, when it’s raining – and I hadn’t lost my creativity. Racking my head for an idea which bent but didn’t break the rules, I decided to take Dylan for a joy ride in the country and then to the car wash. The car wash would, I hoped, be enough to give Dylan the pleasure of running water but without the danger; it was what I judged a ‘contained risk’. Happily, Dylan seemed calm enough as he watched the water cascading down his rear window…

Postscript

I heard yesterday that some emergency respite for Dylan has been approved for this weekend. Dylan hasn’t had any since December mainly because we have struggled to find a provider who felt able to support Dylan given his needs. I’m pleased to say that the place I refer to in this post as Golden Gates are happy to have him. Dylan already knows the setting and the staff and residents and will have a lovely time I’m sure. I’m hoping that although this is emergency respite, it will be the start of what in time becomes transition. May the finishing post stay still long enough for me to guide Dylan through 🙂

Images:

The photographs of fire hydrants and of Dylan curled on one of our local paths were taken by me. They are images I particularly associate with anxiety and meltdown.

Mother And Son In Aspect Ratio 1:1

showroomOne of the things I have missed most while Dylan has been without respite is the cinema. I’ve always loved the movies, especially in the late afternoon, so there was little I liked better on a night off than to catch an early evening film at the cinema across the road from my office. It’s more than four months, now, since I was able to do that. I can hardly believe I’ve managed for so long.

Recently there was a day when I thought I wouldn’t manage. The yearning was physical: I longed for the particular darkness and to feel the tang of marmalade ice cream on my tongue as I waited, in a pulse of white light, for the film to begin. How, I asked myself, could I have this? Screenings don’t start until the afternoon; I couldn’t be home in time for Dylan’s return from day centre even if I went to the first film of the day. Maybe the out-of-town multiplex offered earlier start times but not for the films I wanted to see (or with marmalade ice cream).

I would have to think creatively. The independent cinema I favour offers special screenings for particular sections of the community; once a month, for example, there is an autism-friendly event. I scanned the listings to see if there were an early day group I could join. The new mum club looked good but I didn’t know anyone with a baby I could borrow. The Over-55s? Now that would be the one. There was an 11 a.m. screening that day of a film called Mommy. Perfect.

soundonsight.orgI requested a day’s leave then checked the blurb. Xavier Dolan wasn’t a director I knew and the film was not one I recognised. My heart fell as I read; I wasn’t sure a narrative about a single mother’s struggle to support her violent adult son was what I needed. I was living this reality; I had coped with two incidents that week already. My plan had been to have a couple of hours not thinking about being such a mommy. I let myself feel sorry for myself for a while. Then it occurred to me that  today’s screening might be a gift: perhaps there was something art could teach this just-coping mommy about life?

*

english.rfi.frOnce I was seated in the pulse of light I started to relax. This was exactly what I needed, I told myself. There was a hum of anticipation in the auditorium as a man took the stage; tickets for the 55 club, it turned out, included a talk. Xavier Dolan, I discovered, is a young Quebecois film maker who had turned 26 only the previous week. Mommy was his 5th film; his first, made when he was 19 years old, had received an eight minute standing ovation at the Cannes film festival. Dolan is so very talented, the man giving the introduction mused, and still so young, it will be exciting to see where he goes next.

Dolan had, apparently, created a slightly altered version of Canada for Mommy – a ‘stretched reality’ . The film returned to one of Dolan’s favourite themes: the claustrophobic relationship between a mother and son (his previous films included the ‘semi-autobiographical’ The Reason I Killed My Mother). In order to represent the intensity of the mother-son relationship Dolan had filmed Mommy in something called a 1:1 aspect ratio. This would be immediately apparent to us, we were told, as the screen would look narrower than usual. Dolan had claimed this was the only way to shoot his film; the 1:1 aspect ratio ‘mirrors the turned-in circumstances’ of the mother and son. I had guessed that Mommy would be bone-close viewing. Now I was sure of it. I settled back to watch our narrow world unfold onto a narrowed screen.

*

Earlier that week Dylan had become anxious one evening. Later, when I considered the possible triggers, I couldn’t identify with any certainty what might have caused it. He’d had a calm enough day and was watching a film. My daughter was in her room. I was working in the attic. Perhaps it was a scene in the movie that upset Dylan. Or a sudden memory . Maybe it was confusion at the changes since his sister returned. Whatever it was it made Dylan come hunting for me, intent on tearing off my ears (his particular behaviour). Usually I can predict such an attack and ensure I am safe but on this occasion Dylan had me cornered. I held my arms up to protect myself but I knew it was no good. It would have been much worse, I’m sure, if my daughter hadn’t come to see what the fuss was about and pulled Dylan off.

That’s how it can be sometimes. Dylan doesn’t mean to hurt me. It is a flight/fight response to something which has made him anxious and emotionally overloaded. I probably head off three or four times as many of these incidents as I witness. It’s easy not to notice when we get something right, though, or to overlook the times we handle a situation skilfully. We tend, instead, to remember when we miss something or a situation goes wrong. Dolan understands this; he gives us a mommy sometimes at her glorious best and some days way out of her depth.

*

thechildrensmediaconferenceThe son in Mommy is not autistic. ADHD is mentioned but not as the root of violence; we are offered social as well as psychological explanations (poverty, an absent father, inadequate social care). Nonetheless I recognised the relationship between mother and son and found links with my own experience.

Dolan wants us to see the closeness of the mother-son relationship as both nourishing and limiting. The mother (‘Die’) is the best thing her son, Steve, has; when everyone else has given up on him, she refuses to. But Die also holds him back. She cannot contain her son’s anger by narrowing his world to the walls of her house; when she tries, the violence turns on her. At these times the screen can hardly contain the charge; it spills out of frame as mother and son struggle for control. The intensity of the relationship (its 1:1 aspect ratio) becomes clear as they absorb the violence, refusing to give up on each other or walk away.

As I watched I kept thinking about a book I’d been reading. Phoebe Caldwell, reflecting on her work with autistic adults with learning disabilities, suggests that challenging behaviour can arise from a failure to differentiate from the mother. In ‘normal’ child development, Caldwell explains, mother and baby enter a ‘dyadic state’ in which baby’s every movement and action triggers a response from the mother. For the baby this is confirming; it learns something about its mother but it also learns something about itself. The baby therefore starts to understand that it is separate from the mother. It is possible, Caldwell suggests, that an autistic baby’s brain is unable to interpret the mother’s signals and the baby therefore fails to develop a separate sense of ‘self’. As a result:

Mother and baby remain bonded in this bubble of infantile need – infant because it needs to survive, and mother because she is drawn in by the maternal instinct to meet infantile need. The mother’s agenda remains the child. The baby may grow physically into adult but remains in the infantile state of critical need for the mother’s nurture. It still retains the fear of extinction if it feels it is not receiving this nurture or that the ‘dyad’, the infant survival state, is threatened. (Caldwell, 2006, p. 140)

Violence and aggression are common, Caldwell claims, where there has been a failure to separate from the mother as an infant. When the situation is complicated by autism, she suggests, it is extremely difficult to establish separation as an adult. Direct physical separation, Caldwell explains: ‘simply heightens anxiety, which sends the adult-infant back into the bubble.’ (Caldwell, 2006, p. 141). Recently I have been asking myself whether Dylan and I could be in a dyadic bubble. Perhaps, I reflected as I sat in the darkened cinema, this is what linked me to the woman on the narrowed screen?

*

Viewed through the lens of failure to differentiate from the mother, Dolan’s film made much sense to me. There are other representations of mothering in the film, however. The neighbour, Kyla, for example who befriends Die and Steve. Although we are aware Kyla has children, we don’t see her performing her mothering role; this part of her identity is ‘bracketed’. Kyla’s initial contact with Die and Steve is as a mother-son unit but she soon develops friendships with them as separate individuals. ‘From the point of view of the outsider ‘, Caldwell notes:

the mother/adult-infant bubble ‘feels’ exclusive and others involved in care will feel shut out. It is difficult to cross the boundary either way – the feelings involved are so intense and primal. It requires enormous emotional effort to establish communication between the different parties involved in care since all parties will feel protective. However, a real sharing of feeling may be almost the only way to stand back and see what is happening. (Caldwell, 2006. p. 141).

This process is, I think, one of Dolan’s preoccupations. When Kyla first gets drawn into the mother and son’s world, Die is struggling to establish boundaries that she and Steve can keep. Kyla’s increasing involvement in their lives is transformative. She gives Die a break from caring; she shares some of the practical and emotional responsibility of parenting Steve; she equips mother and son with education and life skills; and, crucially, she models alternative (non-maternal and non-infantilising) ways of building relationships.

Part way through the movie it seems that this support will be enough. It’s a film about community, I thought to myself; Dolan is inviting us to consider society’s role in supporting families. Mommy does not, however, resolve so simply. Unable to continue supporting her son, even with the help of Kyla, Die turns Steve over to the authorities. In a harrowing closing scene we are reminded that there are no winners in this situation. If you are vulnerable and troubled – because you are autistic, perhaps, or have ADHD or learning disabilities or are anxious or mentally ill – then you will struggle to receive the support you need either at home or from the state.

The laws on care and incarceration which Dolan explores may be a ‘stretched reality’ but they didn’t feel too far away from where we are or might be in my own son’s life time. While Steve’s relationship with his mother is claustrophobic and limiting, public services are depicted as chronically damaging. There is a sense in which the relationship between the mother and son, for all its flaws, had been the greater resource; for while such a relationship can be claustrophobic it can also be enabling. Although by the end of the film Die can no longer manage alone, she had at least tried to confound the skeptics; from the ‘turned in’ circumstances of a mother and son, stretched vision can also come. Mommy turned out to be gift indeed.


References:

Dolan, Xavier (2014) [Director] Mommy
Caldwell, Phoebe (2006) Finding You Finding Me. Jessica Kingsley Publishers

Images:
Showroom cinema by libcom.org Mommy by soundonsight;Xavier Dolan by english.rfi.fr; interior of the Showroom by thechildrensmediaconference

Dylan And The Dinosaur Of Anxiety

WP_20141228_18_22_41_ProSince last June I’ve been puzzling over some ‘challenging behaviours’ which Dylan developed out of the blue after twenty years of gentleness. The behaviours began with periods during which Dylan threw himself around violently and progressed to physical attacks on others, usually focused on ears. Prior to these episodes Dylan would often go into a trance-like state and during the incidents would appear not to recognise familiar people. At these times Dylan would be ‘unreachable’ and afterwards appear exhausted and seem not to have any recollection of events.

I have described my search for possible explanations for the behaviours, and the methods I used to document them, in previous posts (for example here and here). As my approach to working with Dylan (who doesn’t use speech to communicate and who has a significant learning disability) has always been that behaviour is communication I focused initially on environmental factors. There had been so much change in Dylan’s life that this seemed a likely explanation: in the previous few years he had experienced the death of his Gran and departure of his sister and had left education and care settings where he had been happy. Furthermore, Dylan’s provision on leaving school lacked the consistency he needed. These changes seemed a plausible explanation for Dylan’s distress.

The episodes declined following some adjustments to Dylan’s day care: full-time rather than part-time attendance, a change of support worker and an increase in Occupational Therapy all seemed to help. Other possibilities presented themselves. The ABC charts I used to analyse the behaviours suggested, for example, that they may be linked to food. Removing sugar from Dylan’s diet appeared to have an impact; the incidents which had been happening daily reduced to around once a week. I continued to puzzle, however, over behaviours which, while less frequent, became increasingly severe.

Neurological investigations

WP_20141228_18_22_49_ProDue to the symptoms which accompany the behaviours (the ‘absences’ and exhausted aftermath) Dylan’s GP referred him for neurological investigation. Epilepsy and schizophrenia can develop around the age Dylan is currently so I had specific concerns that Dylan’s behaviours may be due to the onset of one or both of these.

It took a while for Dylan to access an appropriate clinic. The first consultant we saw had no experience with ‘non-verbal’ patients with learning disability and autism and simply shook his head. The colleague he passed Dylan onto, however, was experienced and skilled. Dylan doesn’t tolerate medical interventions (I have written about this here and here) so I knew it would be challenging if recommended. Happily, the consultant whose clinic we had arrived at understood this.

WP_20141230_18_53_14_ProWithout medical investigations (MRI, EEG) he couldn’t say definitively but in his view, the neurologist said, Dylan probably wasn’t developing epilepsy or schizophrenia. The pattern of the episodes – their incidence and duration and Dylan’s response during and after – did not fit with the classic presentation. He couldn’t rule it out entirely – there were instances of epilepsy triggering the sorts of behaviours I had described – but these were rare.

It was much more likely that Dylan’s behaviour was a reaction to environmental factors or maturation. Puberty, the neurologist pointed out, can trigger emotional reactions which are difficult for any young person to make sense of; for Dylan, these feelings could be quite confusing. ‘He is a strong young man’, the consultant observed. ‘And you, if you will excuse me saying, are not a young woman or strong like this’. Keeping Dylan physically active would help, he told me.

I preferred to believe it was consultants who were getting younger rather than I who was getting older, I told him. But, I reassured the consultant, Dylan’s schedule was filled with OT and sports activities which, I agreed, were helpful. The consultant smiled. Then he told me how – years before, while practicing in WP_20141231_16_56_00_ProGermany – he had observed that the adults with learning disabilities in a institutional setting he visited exhibited challenging behaviour for 51 weeks a year. But once a year, he told me, the residents were taken on holiday where they had access to expansive grounds and were able to run free. During this week each year, he said, the behaviours disappeared.

The neurologist realised (I think) that Dylan has an active life and was not intending to draw a direct comparison between Dylan and the adults in his story. What he was reflecting, however, was that behaviour is usually communication. In a follow-up letter to me he wrote: “I thought that it was most likely that the behaviours you describe are dissociative coping behaviours. I suspect that they help Dylan to deal with some form of distress… Hopefully you and Dylan’s other carers will, in time, be able to learn even more about what is likely to trigger attacks so that his care can be modified and that attacks can either be avoided or contained more effectively.”

Environmental explanations

This makes sense to me. It is also the sense which Phoebe Caldwell, in her marvellous book Finding You Finding Me (Jessica Kingsley, 2006) makes of such behaviours. It isn’t a new book but I stumbled across it (via a circuitous route through poetry and Rowan Williams) only recently. How could I have missed it? I haven’t finished reading it yet but already it has changed my world. I’ll say more about the book in a later post. For the moment I want to share just a couple of things Caldwell has to say which seem particularly pertinent:

Families may be at their wits’ end – and sometimes feeling guilty at their despair… I meet staff who are being asked to cope with impossible levels of aggression and management who are unable to come up with solutions. In many cases, person-centred planning is interpreted as how we can fit individuals into our agendas. Quite a number of the people in the most deep distress are boys fighting their way through the hormonal jungle of puberty. (pp. 25-26)

As for those whose severe learning disabilities are compounded by autism and who cannot speak for themselves, all we can do is judge from their behavioural responses to people and their environment. From the evidence of the sometimes extreme behavioural distress, one has to presume that many of them do continue experiencing fragmentation [a process arising from overload in which sensory experience breaks down ] throughout adult life. They cannot help themselves through logic and communication: their only resort is to develop coping strategies, which can so often include severe aggression. (p. 35)

WP_20150106_16_15_42_ProAs well as Dylan’s referral to a consultant neurologist I had requested a referral to a consultant psychiatrist; while this dual track (medical and social) approach could have resulted in conflicting verdicts, happily on this occasion the professionals agreed with each other (and with Phoebe Caldwell). The psychiatrist’s preliminary assessment, like the consultant neurologist’s, is that Dylan’s behaviours are likely to be due to environmental triggers. In particular, it is suggested, Dylan’s distress is probably caused by anxiety.

I have found this triangulation of professional perspectives helpful in that it has allowed me to go forwards with more confidence; a convergence of views on cause helps clarify response. In his letter to me the neurologist described Dylan’s behaviours as functional in that episodes ‘move [Dylan] on from experiencing distress to a place in which he cannot recall the distress and perhaps feels physically exhausted’. The psychiatrist has suggested that it is possible to help Dylan to ‘unlearn’ a behaviour that he has come to associate with such release from stress. At the moment Dylan is so fixated on removing my ears that the possibility I can re-direct this behaviour feels out of reach. The fact that the psychiatrist believes this is a reasonable goal, however, keeps me optimistic.

The unlearning

WP_20150114_08_23_04_ProI have had some unlearning of my own to do. My work in education means I am used to a cycle of monitoring, assessing, recording and reporting. Going into my initial meetings with professionals I reflected that I was probably ahead of a system which would (I presumed) require me to produce data I had already collected. It was with a sense of resignation then (not, I hope, arrogance) that in advance of the meeting I asked myself what a psychiatrist might tell me that I didn’t already know. Happily, however, there turned out to be plenty. With building interest and admiration I watched the psychiatrist bring her professional knowledge and understanding to the data I had collected. While I might be able to observe and record my son, I realised, what I didn’t have was this particular lens through which to filter the material. What I also lacked was the wide experience of other young men like Dylan which the psychiatrist could draw upon (for while Dylan may be different he could also be similar). My data charts had lots of good notes in them but they were in search of a tune; what the psychiatrist did, I reflected afterwards, was orchestrate.

The Dinosaur

WP_20150114_08_22_33_ProWhile supporting Dylan to ‘unlearn’ (inappropriate) coping responses will be useful, it is obviously preferable to modify the environment so as to reduce Dylan’s distress. The psychiatrist’s ‘orchestration’ of my observations of Dylan therefore focused on the identification of possible explanations for his anxiety. I liked the way she wove observations together to make connections I hadn’t considered.

One issue raised, for example, was that the first occurrence of the behaviour happened while Dylan was in overnight respite the week after I had taken my first break without him (which I wrote about here). It might be the case, the psychiatrist suggested, that although Dylan appeared to cope while I was away perhaps the following week, when Dylan returned to respite care for his regular overnight stay, he was made anxious by uncertainty as to how long I would be gone.

Some of the most challenging incidents have happened while Dylan has been viewing DVDs and during the meeting we were able to link possible anxiety about separation with Dylan’s reaction to certain film sequences. One scene which seems to cause Dylan particular distress is a moment in Dinosaur when an egg becomes separated from the mother. Those involved in Dylan’s care had been aware that such scenes can trigger behaviours. We had also noted the impact of my short break on Dylan and tentatively used the word ‘separation’. What the consultant was able to do, however, was confirm that this might be relevant while at the same time signalling its necessary complexity.

Necessary Complexity

WP_20150120_15_01_11_Pro-1The complexity is that we might have two dinosaurs rather than one. Because if it is the case that a son or daughter is anxious about separation, a mother’s intuitive response (especially an anxious mother) can be to avoid separation. Instead of planning for Dylan to spend increasing time away from me as preparation for leaving home, my instinct now was to keep him close. The dinosaur of anxiety could be mine, then, aswell?

But the psychiatrist wasn’t going to allow this; her job was to get rid of the dinosaur not let another one into the room. Dylan she said (offering another version of what the neurologist said) is in his prime; he doesn’t want to go collecting leaves with his mum. I looked at her aghast. How did she know that’s what we’d been doing at the weekend? B-b-but he likes doing that, I retorted. He liked it, she pointed out, because it was what he knew. What I needed to do was support him to do other things too, confidently and without me. In order to deal with separation anxiety, it seems, we have to learn to be separate. That will be a dinosaur of a challenge for me as much as for Dylan, I know.

The metaphor

WP_20150120_15_02_10_Pro-1Shortly after the meeting my attention was caught by a ‘hatch your own dinosaur egg’ pocket money toy (for £2.99). I couldn’t resist buying it as a Christmas stocking filler for Dylan. You put the egg in a jug of cool water and increased the size of the container as the hatching progressed; perhaps looking after the egg could help re-shape Dylan’s response to the film sequence?

The egg showed no sign of life for a few days and Dylan paid no attention to it. One evening, however, a crack appeared, quickly followed by a green nose. Dylan seemed alarmed so I moved the egg from his bedroom to the kitchen where we could keep an eye on it together. The rest of our holiday was spent checking the egg. Dylan’s response shifted, slowly as a dinosaur, from anxiety about its presence to curiosity. By New Year’s Eve the birth seemed imminent and Dylan interested. If it hatches before midnight, I told him, we’ll call her Eve. If she appears tomorrow she will have to be New Year’s Day-sy.

And so it was that after twelve days Daisy was born. Since her arrival she has continued to grow as Dylan – who seems to really like her – bathes with her twice a day. Unfortunately Daisy’s skin seems to be ‘pruning’ badly (the warm water I suspect) and we may soon be faced with a tough decision about the future. Daisy may only be a metaphor, but she could be quite a useful one…

 Reference:

Caldwell, P. (2006) Finding You Finding Me. Jessica Kingsley

All photographs are of Daisy.

Autism And Deprivation Of Liberty: the ethics of food

water68Dylan is in week four of his low sugar diet; the charts I’ve been keeping show the ‘challenging behaviour’ has dramatically reduced but not disappeared. The incidents that have occurred, however, have been severe. Such observations make decision-making hard: if the behaviours had vanished I would be making a noise about sugar and if there’d been no change I would be celebrating with shortbread. But here, in the greyscale world, things are less clear cut.

I cannot rule sugar out yet; it may be that on the days there were incidents Dylan had eaten sugar without me realising. I am still learning about the sugar content of products and have made some mistakes. My daughter pointed out that the flavoured Volvic water I’d bought for Dylan, for example, had a high sugar content. I was outraged; the product is marketed and sold as water. I read the labels of even the most unlikely products now.

Deprivation Of Liberty

water 007Clearly intervening in the diet of a 20 year old man raises ethical issues but, as I’ve noted previously, Dylan is capable of resisting dietary change; eating and drinking are activities which require Dylan’s consent at a basic level. Saying ‘No’ to Dylan’s request for certain foods, however, is Deprivation Of Liberty (DOL) and requires justification.

The first time I had to consider the implications of DOL was a year ago. Within a short time of Dylan starting at a day service after leaving school he had gained weight. I assumed this must be because he was less active than at school so I enrolled him in a gym. Collecting Dylan from his day service one evening, however, I found him clutching a handful of biscuits; it transpired that Dylan had access to a kitchen area and had been helping himself. As Dylan was an adult, I was told at a meeting to discuss my concerns, preventing him from doing this would be Deprivation Of Liberty.

Happily there was an outbreak of common sense; Dylan’s social worker confirmed that as his support plan included a reference to Dylan needing support to make healthy eating choices the day service should ensure he didn’t have free access to biscuits. Dylan’s adult schedule does, however, offer more opportunities for snacking than Dylan had previously. Whereas at school he had only a hot meal at lunchtime, Dylan’s timetable now includes a range of activities in the community which offer the possibility of a drink and snack. While this makes it harder to introduce the new diet it doesn’t alter the ethical dilemma; DOL requires as much justification for a single refusal as repeated denials.

Balance

water 011In last week’s post I mentioned a paper on the rights of people with developmental disabilities. The paper is pertinent as it focuses on the moral and legal implications of exercising control over someone’s life by curtailing their choices. The sub-title of the paper – the rights of people with developmental disabilities to eat too many doughnuts and take a nap – makes clear that food is a key arena for such dilemmas.

‘Biscuitgate’ (as I came to think of it) illustrates the need to identify areas where support with choice is needed. Learning to exercise impulse-control in relation to food and drink is something which can be addressed as part of a personal development programme; if goals are established within a care plan then reducing sugary snacks becomes something which is enabling rather than a deprivation of liberty. A care worker shared an example of this with me recently. A young man she supports becomes ill, apparently, after eating high fat foods; unfortunately his favourite brand of Cornish Pasty makes him particularly poorly. Because this young man is able to understand the link between certain foods and feeling ill he is able to make a choice; although he mostly avoids the triggers, every so often he has a pasty.

While we respect a person’s right to get sick, the right to personal liberty needs to be balanced against the need to protect others if this involves violent or anti-social behaviour. Dylan’s behaviour has put him in physical danger, made him vulnerable in the community and injured those caring for him. The incidents have impacted on Dylan’s life in terms of support levels, his access to the community and his leisure activities. If such behaviour is a consequence of eating sugar, isn’t this ground for depriving Dylan of the liberty to consume it? Plenty of people, however, become anti-social after drinking and we don’t deny them the right to drink: why should I have the right to remove sugar from Dylan’s diet?

Assumed consent

water 012The crux of the issue, I would argue, is capacity. While someone choosing to drink alcohol is aware of the possible negative as well as positive consequences of their actions, Dylan does not link his consumption of sugar with feeling angry. This is hardly surprising: I spent two months puzzling over the change in Dylan’s behaviour and only by chance stumbled on the potential link with sugar. The link is not intuitive partly because of the disconnect between the activity (eating sugar) and the behaviour (aggression). Even if I were to try and explain this in appropriate language (‘shortbread make Dylan cross and sad’) Dylan’s understanding of consequences is present-time; he knows that if he puts his hand in the candle flame it will burn but he doesn’t yet grasp cause and effect over time. As far as Dylan is concerned, ‘shortbread make Dylan happy and smiley’.

If Dylan is unable to make an informed choice, and if not making the choice puts Dylan or others at risk, I would argue that exercising control over Dylan’s diet does not deprive Dylan of liberty but rather ensures his safety and dignity. This does not, however, eliminate the need for consent; even though I have taken the decision on Dylan’s behalf I need his consent for it. But how?

The measures I am using are ‘soft’ observations of Dylan which include:

  • He seems to be enjoying his meals
  • He appears to be enjoying new practices (jugs of iced water for example)
  • He has introduced new routines (counting strawberries while preparing his pudding)
  • He has tried new foods
  • He hasn’t ‘asked’ for sugary products in the community or when visiting

These observations give the impression that Dylan is not only not hankering after sugar but is enjoying his new diet. Whatever the eventual verdict on the sugar trial, realising that Dylan is amenable to change and can be supported to make healthier choices in relation to food is a positive outcome. If it turns out that sugar is not implicated in Dylan’s behaviours then it can be reintroduced more healthily. Sometimes it can take a crisis to trigger modest change; making a molehill out of a mountain can be good.

Medical evidence

2014-09-02 09.28.49I’m not yet certain that Dylan’s aggressive behaviour is linked to his sugar consumption but have decided to continue with the diet at least for the moment. Such a common sense intervention may be OK as part of a trial but to justify it longer term I need more information; my charts are useful as far as they go but I want something clearer than greyscale.

Last week I asked the GP whether it would be possible to check for sugar-related issues by urine sample. Although not as good as a blood test it will, apparently, provide some information. Dylan had not given a urine sample before; not only would I have to deal with the issue of consent but with fundamental explanation. I spent days working on this. I played charades with the diamond-shaped pot the GP provided then left it in the bathroom. When it remained untouched I offered more active encouragement at bath time. Eventually, on the fifth day:  success. It occurred to me, during this process, that from Dylan’s perspective it must seem quite bizarre: after years of telling him to pee in the toilet suddenly I ask him to pee in a pot. I watched Dylan out of the corner of my eye as I decanted the sample into a specimen tube; there was a definite ‘she’s gone crazy’ look in his eye.

Later in the week I watched a documentary about London Zoo. Using classic Pavlovian methods the keepers were training some animals to accept basic medical observations. I watched fascinated as a gorilla, in exchange for a favourite food, allowed his keeper to listen to his heart through a stethoscope, check his basic functions and administer a needle. The gorilla was healthy but medical checks had been built into his care routine as a safeguard for the day when he might need them. What staff didn’t want, a keeper explained, was to have to have to use aggressive intervention with a sick animal; they preferred to build a partnership between animal and keeper based on trust (and fruit).

As I’ve suggested before in relation to medical procedures, if you are parenting a child who has a significant developmental disability then it’s probably a good idea to introduce a clinical environment as early as possible. When Dylan was young I was relieved that he was physically healthy and didn’t need to access medical services; now I wish I’d had more reason to take him. In an earlier post I reflected on the use of behaviourist strategies with autistic children; although generally uncomfortable with food rewards I noted that I had found them useful for specific tasks. Watching the zoo documentary I added ‘acceptance of medical procedures’ to my mental list. If I had my time again I would happily exchange sweets for blood and urine.

Celebrating quietly

water 013I gave Dylan a limited explanation about why I wanted him to pee in a pot and was careful not to talk about consequences. If something did show up in the tests, I thought to myself, it would raise a set of challenges which we didn’t need to face yet. Given Dylan’s resistance to medical treatment, saying ‘medicine’ at this stage would, I was sure, remove any possibility of getting a sample. I would deal with the consequences later. I’m not sure how useful the tests will be but I’m hoping they will at least inform a decision about Dylan’s diet. And even if they don’t, it feels good to have achieved another first: a urine sample may not sound like a big deal but for me it’s worthy of quiet celebration.

*

Reference:

Bannerman, J.D., Sheldon, J.B., Sherman, J.A. and Harchik, A. E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties:  The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behaviour Analysis, Vol 23, No. 1, 79-89.

Images:

All photographs taken by Liz

UPDATE:  The urine sample was clear. ‘No action required’.  While I’m glad Dylan doesn’t need further investigations or treatment, part of me hoped for a clue to the changes in Dylan’s behaviour. The search continues…