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.

And Finally

more garden in may 009I am relieved to report that my request for a place at a National Autistic Society home for Dylan cleared the final hurdle last week and was approved. I’m not sure the implications of this have sunk in yet but it is what I have been advocating for and I am pleased to have achieved this for Dylan at last.

It is two years since I set up this blog. I started it because I was dismayed by the lack of options for Dylan when he left school. Initially my concern was that he wasn’t allocated enough day care to enable me to get to work (which I needed to do as a single parent) but I soon realised the issue was not how many hours Dylan was or was not entitled to but the shortage of appropriate adult provision.

This blog records Dylan’s difficult transition to the adult sector and its impact on us both. My posts during the first year described my attempts to secure education provision for Dylan, having established his entitlement to this through a legal action against my Local Authority. While I waited for a suitable post-19 setting to be developed, Dylan attended two different part-time placements during the week (one social care and one education-funded) and was cared for some of the time by me. That year was confusing and chaotic. The placements weren’t joined up and there was no continuity of care for Dylan. Leaving school was always going to be a difficult transition for Dylan but replacing a full time setting with a mixture of part-time care escalated the anxiety.

garden june 004Who knows to what extent this hotchpotch provision triggered the behaviours which emerged in Dylan at the end of that first year. Since then, my posts have focused on my attempts to understand Dylan’s ‘challenging behaviour’. My search for explanations has focused on physiological as well as environmental factors but the consensus is that the underlying cause is psychological. It seemed to help Dylan when it was agreed he could attend his day centre full time rather than continue with the miscellany of provision he had been accessing. Even with adjustments to his care, however, it was clear that Dylan needed more support than previously in order to stay safe and to access the community.

Within a year of leaving school, therefore, Dylan’s profile and the priorities for his care had shifted from continuing education to continuing health. Some of my posts during the last year describe my attempts to secure health sector funding so that Dylan’s needs could be met. Perhaps my earlier battle for education funding gave me the confidence to challenge an initial decision against health funding for Dylan but I would urge any parent in a similar position to do the same; having to appeal decisions seems to be increasingly standard so don’t expect the first judgement to be in your favour. When I eventually secured health funding for Dylan, more appropriate options for him opened up.

garden june 003When Dylan left his National Autistic Society school in the summer of 2013 a residential home  was being established for school leavers who needed higher levels of care. Dylan was familiar with the setting as he had stayed there overnight occasionally (it was previously used for respite for children attending the school). Some of his peers would be moving into the home and Dylan knew some of the staff too. Naturally I requested a placement for Dylan, thinking it would offer a seamless transition to an appropriate setting.

My request was turned down two years ago, partly because Dylan didn’t have health funding at the time but also because my Local Authority’s policy is to place adults in the community, rather than residential care, and not to fund placements out of city. My request for Dylan to be allocated a place at the NAS home failed against both criteria. This rigid approach is, I would argue, short-sighted. While I understand the ideology (post-Winterbourne) it remains the case that for some young people a specialised residential placement is appropriate. Dylan, for example, needs the customised living and outdoor space which residential care offers as well as access to a team of professionals rather than the single care workers who typically support adults in the community.

WP_20150712_18_21_50_ProFinally, after months of crisis and distress, Dylan’s need for such provision has been accepted; two years (almost to the day) since he left school, the NAS home I originally requested is the one that has now been approved. Although the home lies just beyond the city edge, I would have happily accepted somewhere within the authority had anywhere been suitable; indeed I pulled out of another out-of-city placement partly because I was reluctant for Dylan to leave his community. When I tried to identify a local residential placement, however, there was nothing adequate or appropriately specialised. If local authorities cannot make suitable provision for autistic adults with high care needs, they are not in a position to refuse to fund specialist placements out of city (or borough).

Because the setting that has been approved is a familiar environment for Dylan, transition so far has seemed relatively comfortable  (although I have been warned that behaviours are likely to increase initially). The plan for supporting Dylan into his new home is the best it could be; although the placement started this week, Dylan will be jointly supported by staff from his day centre and residential home and will continue to live partly with me for the first month. A holiday planned for August will mark a natural end to this initial transition period, after which the aim is that Dylan will be based at his new home.

more garden in may 018I know that there will be challenges ahead for us both. Although I was relieved to receive the news I have felt utterly exhausted since and have had moments of terrible doubt and anxiety. I tell myself this is surely natural. On Monday night – the first day of Dylan’s placement – he stayed overnight at his new home so I could fulfil a long-standing poetry commitment. I wasn’t sure this was what I needed on the day as I felt tired and emotional. On reflection, however, it was an appropriate way to mark the start of this next phase of our lives, living more independently of each other. The poetry reading was also useful in distracting me from my anxiety and preoccupation with the new arrangement; better than sitting at home, fretting.

A friend, recognising something of what I was going through and with the wisdom of already having waved goodbye to a grown-up son (though not in the context of autism), sent me a poem yesterday. The piece, Walking Away by C. Day Lewis, ends like this:

I have had worse partings, but none that so
Gnaws at my mind still. Perhaps it is roughly
Saying what God alone could perfectly show –
How selfhood begins with a walking away,
And love is proved in the letting go.

garden june 008I can see that even with the extra challenges confronting a parent of a disabled child the ‘letting go’ still has to be faced and embraced. Our life together is changing, I tell myself, not ending.  Although like Dylan I will live with autism forever,  I will no longer be living with it in the same way. Over the next few months, therefore, this blog will change and in due course come to an end. It has served its original purpose and Dylan and I have grown beyond its focus.

My plan is to keep the blog going, however, while I learn to let go. I have in mind to use it as a diary space where I can record my thoughts and feelings in the first 100 days of living without autism. I’ll start counting when Dylan moves full time into his new home after our August holiday. Before that, however, I have two more posts to write. One is on a difficult subject which I’ve been meaning to confront since I set the blog up; I have been ducking it but cannot any longer. The other post will offer some reflections on what I have learned from this blog and the ways in which it has been a positive force for me (and I hope Dylan) in the last couple of years.

And finally, I want to thank you (yes, you) for reading, for your encouragement, and for your friendship and support.

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Images:
The photographs were taken in my backyard in May and June this year. I have never been a gardener and I don’t have much outside space but recently I have spent more time in my yard and found it therapeutic. I have come to think of this as a safe space where I can let go of some of the anxieties of being a carer. I think I will always associate it with this period of my life with Dylan.

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.

Nae Narrative: Goldilocks and the handbrake turn

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

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

References

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

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

Zen And The Art Of Caring: the swept path

wet leaf fall 004The Anglo-Saxon name for an October moon isn’t Falling Leaf Moon without reason; for the last few weeks I’ve been meaning to sweep my front path. Dylan will slip on those leaves, I’ve kept telling myself.

Since Dylan started going to and from school on local authority transport at the age of five he has had the habit of hurtling at high speed into the house on his return. Without stopping to look or check for potential obstacles along the route he sprints like a German ICE or Japanese Bullet train to his destination. This habit has stayed with Dylan through 19 years of schooling and four different houses, three different schools and dozens of different drivers and escorts.

Although this behaviour may not appear unduly worrying it can be problematic. There are pedestrians, for example, who may be knocked to the ground by whirlwind Dilly. As the behaviour continues year round, unchecked by weather conditions, there is the danger that Dylan could fall badly in icy weather (or wet autumn leaves). And there is the possibility that in Dylan’s 50-250 yard sprint (depending on where the minibus has managed to park) he will encounter something to spook him – a dog say – and throw him catastrophically off his stride and into passing traffic. For in this brief time, Dylan is beyond any supervision or control; all a carer can do is stand back and watch, fingers crossed.

While the home sprint may be relatively low-risk, I worked with Dylan’s teachers and escorts periodically to try and re-shape the behaviour. We tried rebus symbols, rewards and changes to the drop-off routine but nothing made a difference. Eventually I gave up, thinking that perhaps once Dylan left school it would no longer be an issue, especially as the behaviour seemed to apply only to local authority transport (Dylan walks perfectly calmly into the house from cars and public transport). The behaviour appears, however, to be deeply embedded; Dylan has continued to sprint into the house from the minibus which now brings him home from his adult day centre.

wet leaf fall 005I must sweep these leaves up, I said to Dylan as I locked the front door of the house one morning last week: I’ll do it tonight. I put Dylan on his minibus and raced to work. I am always rushing to and from work. I have perfected the art of being back in time for Dylan’s bus while wringing every last minute from the working day; I know the shortest time it takes from desk to front door and I almost always bank on it. It’s a vital calculation; get it wrong and the consequences are horrible. Dylan would not understand, if I wasn’t home, why he couldn’t get off the minibus. Having to wait for me to arrive would not only distress Dylan but would have knock-on effects on other service users and families.

When Dylan was at school I was aware that local authority transport was only allowed to wait for an absent parent for so long before taking the uncollected child to what I always thought of as ‘the pound’. While I never had had to retrieve Dylan from such a place, I did slip up a few times. Usually I was stuck in traffic within striking distance of home; over a 15 year period, given that I’m a single working parent, that’s not bad. I always cut it fine though and one thing my calculations never seem to adjust for is the sweeping of paths: I didn’t, of course, get home in time to do this last week.

The swept path

wet leaf fall 001So when I got Dylan off the bus that night I hollered slow down, you’ll slip as he raced towards the house. The bus had had to park further away than usual that night due to workmen; as I had walked up the road to get Dylan I told them they might want to stand back a bit as in a moment my big boy would come tearing past at high speed – which is exactly what happened, with me in hot pursuit.

I don’t know what I expected to gain by chasing after Dylan like that. He is nearly 21 and in his physical prime. I wasn’t going to catch him. Even if I kept him within ear shot he wasn’t going to listen to my exhortation to walk. So haring after him, I now realise, was pointless and silly. But that is what I did and yes, you’ve guessed: I fell on the unswept path. And I went with such a bang and a crack on those wet leaves I lay dazed on the ground wondering what on earth I had done and what I would do next. When I limped into the house Dylan had his arms clamped around his ears, a sign that he was distressed. So instead of letting myself cry or peel off my clothes to inspect the damage I said ‘mummy fell’ then maintained our usual routine of reading and signing Dylan’s link file entry about his day. I would deal with the blood and bruises later.

wet leaf fall 008Happily they turned out not to be so bad; a few days later and I am already mending. I could have done without that fall though; it has made caring for Dylan and myself, as well as working and doing things like driving, slow and difficult. The first night, struggling to cook, shave Dylan or type, I chided myself for not keeping a swept path. I need a more zen approach to caring, I told myself; taking a few moments for small tasks, like clearing leaves, could make a difference to my well-being.

wet leaf fall 009So the next day I swept my path. It only took ten minutes but from that short time I took something valuable. And while I was sweeping I remembered a poem about a swept path. The poem, by Helen Farish, is not about autism; the narrator is learning to care for lavender, rather than for a child. The process Farish describes, however, and its impact on her sense of self, resonates with my experience in many ways. Farish reminds me to celebrate myself; this week the achievement I am most proud of is, indeed, my swept front path.

Programme
Helen Farish

She loves the radio, the freedom it gives
to listen out the back as she’s passing to and fro
or sitting in the half-house half-garden room

on a midsummer’s Sunday evening
listening to a three-hour programme on the monsoon,
and the front door is open and the back,

and every now and then the setting light
coming past the lavender she’s recently started caring for
and the honeysuckle she never used to notice nor those roses

hidden till she chopped back the buddleia – the light
coming past the flowering jasmine and the hanging basket
she’s so pleased with stops her,

makes her see how much of her life
has been lived in this house,
that she’s become who she is here

and what she will remember of these years is not
the times when living alone seemed a problem to solve
but the peace:

looking at a house she has done her best in,
loving small successes, the hanging basket, the picture in the half-
house half-garden room, that repotted plant,

and her larger successes – allowing herself the pleasure
of a three-hour programme on the monsoon
sorting through a box of postcards with a green glass of gin,

wet leaf fall 011seeing all those places she’s been to: but her journey
to this programme, her swept front path, this is
the one she’s most proud of.

Reference:

Helen Farish, ‘Programme’ in Intimates (Cape, 2005)

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…

The Numbers Game: advocating for Dylan

Dylan leaves school 015This time last year Dylan had just left school. Our local authority had not allocated an adult placement and I was anxious; Dylan was in need of structured provision and I needed to get to work. At the end of the summer, with no solution in sight, I decided to take legal action against the council. In this post I tell the story of my struggle to secure provision for Dylan; it’s a ‘cock up or cover up’ tale and a narrative of numbers.

1,000
I’ve heard this cited as the amount (£) required per week to support an autistic adult with significant needs. That’s £200 per day calculated over five days or £142.85 per day for seven; these figures can be further divided to produce a ballpark hourly sum. While it is clear from such calculations that £1,000 per week doesn’t come close to funding residential care it is a realistic amount for day care. This may seem a lot of money. It is not dissimilar, however, to the amount we would need to pay parents to care for pre-school children if this were rewarded as paid labour. Parents of autistic children provide such support, unpaid, throughout the school years as part of an informal economy of care. Once an autistic child reaches adulthood, however, the cost of any continuing support needs are funded via personal budgets and become part of the formal economy.

Compassionate economics
botanical gardens 001
Caring for the vulnerable is a responsibility which everyone assumes in a compassionate society; in the UK these principles are at the heart of a tax system which redistributes resources to those most in need. I’m fortunate to have a job which enables me to make a contribution to the welfare state. While I don’t always agree with the Government’s spending priorities, I’m happy to pay my taxes: for me, Dylan embodies both reason and need. Supporting disabled people contributes to the economy too: Dylan purchases care services with his personal budget which helps to create jobs with all the economic benefits which follow from that. While the care sector faces significant challenges, especially in relation to the pay and conditions of care workers, it is sustained by people like Dylan. Dylan also contributes to the economy through his spending on goods and services, particularly in the leisure sector. This injection of money into the local economy via personal budgets creates a multiplier effect and contributes to a community’s financial health and well-being.

39, 010.00 botanical gardens 003
So when Dylan turned 18 he underwent assessment to determine how much social care funding he would be allocated; this is calculated via a questionnaire completed by a social worker. Dylan’s personal budget was set at the above amount. When I received notification of this it seemed like a lot, particularly as at that point Dylan was still at school and needed only a small amount of respite (I have written about this here). I had a sense of unease though; I wasn’t sure how the budget would cover day care as well once Dylan left school. I wasn’t aware, at the time, of the figure of 1,000 a week; had I been I might have asked which 13 of the 52 weeks the budget was not intended to cover (and why).

17
It was an ‘indicative figure’ only, apparently, not a funding agreement. What this meant was that the Panel believed Dylan’s care needs could be met within this amount. The next stage was for a Support Plan to be submitted with detailed proposals for how the money would be spent. Only once such a plan had been approved would any funding be released; a proposal which didn’t keep within the indicative budget, I was warned, was unlikely to be funded. I opted to write Dylan’s Support Plan myself as I had already started researching and visiting providers. The settings I considered included local and regional providers, colleges and care homes, day centres and residential placements. My final tally of visits to potential providers was 17: ‘I’ve never known anyone make as many visits as you’, a man from the council would later observe.

Tails and dogs botanical gardens 004
There is a saying in education: ‘it’s the resources tail wagging the curriculum dog’. This refers to the way that educational practice is sometimes driven by resources rather than need. And what’s wrong with that? you might ask, everyone has to live within their means. While Dylan was in the education system, however, the starting point felt like need; the budget played a part in the provision he was offered but it was factored in after his needs had been considered rather than before. I was struck by the way this turned on its head when Dylan moved into adult social care; here is what you can spend – now go and see what you can buy. What Dylan could afford with his budget, it turned out, wasn’t very much. The variety of the 17 providers I had identified was reflected in the range of their fees. The first provider I visited set the gold standard at £4,000 per week. When I looked round the setting I felt optimistic about the future. Afterwards, when I realised it was neither typical or realistic, I allowed myself only fleeting disappointment; the setting was expensive because it catered for people for whom all other placements had failed. Dylan was at the start of his journey, not the end; requesting this setting would be unreasonable. I therefore ‘cut the cloth’ (a variation on the tail and the dog).

54, 067
botanical gardens 005I opted for a day service for adults with learning disabilities and submitted my first support plan in April 2013. The projected budget was higher than Dylan’s indicative budget but I thought it would be OK; it worked out around £1,000 per week. Furthermore, the amount requested for day care was within the indicative budget; it was the one night a week of respite which had taken the overall amount above the indicative level.

Level 42
The April support plan was rejected. So was a revised plan for a reduced amount which I submitted in May. So was the further reduced June support plan. And the even further reduced July support plan. In order to cut costs further I was faced with the choice of sacrificing Dylan’s one night a week respite provision (in the almost-certain knowledge that I would get into crisis without it) or keeping the respite provision and reducing Dylan’s day care provision (so not being able to work full time and provide financially). Then I discovered level 42: there was I heard (though the council wouldn’t admit this) a budget cap of £42,000. Was it true that Dylan’s Support Plans were being rejected because of a budget cap? I asked the social worker. No it was because they were above his indicative budget. Dylan needed a higher indicative budget then – the one he had been given wouldn’t meet his needs. Could he be reassessed? Dylan’s indicative budget was as high as it was possible to be allocated, Dylan’s social worker replied: I could request reassessment but there was only one way it could go and that was down.

The line in the sand botanical gardens 006
Social workers are doing the job because they care but it can be hard to remember this sometimes. There are times when they can feel like adversaries rather than advocates. They are under pressure I know; they are probably encouraged not to bring Support Plans for approval which are above a certain amount. I know some social workers who have quit their jobs to work on projects which give them more contact with clients. I imagine that for them the policy drift became intolerable. It’s what I think of as the line in the sand: the point of principle you will not cross; the place where you shout Stop, Enough! When Dylan’s fourth Support Plan was rejected it was suggested that I employ a Personal Assistant for Dylan in order to cut costs. While this works well for some people it would not be a good option for Dylan or the PA: I had reached my line.

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I couldn’t see a way of maintaining our current life so started plotting escape narratives: I would buy a camper van and travel round Britain with Dylan, living on benefits. We would find a 52 week caravan park. We would live on a commune in exchange for payment in kind (what? what could we offer?). I started typing wild questions into Google, hoping for an answer. Then something appeared in my Facebook newsfeed: an autistic man in another authority was taking his council to court for budget capping. I read with gathering interest; although the details were different, the principles were the same. I shelved the camper van idea and booked an appointment with a solicitor.
The solicitor confirmed that budget capping was illegal but, she said, if we didn’t have evidence in writing that the local authority had set a limit of 42,000 it would be a difficult case to win. However, my solicitor asked, was I aware of section 139a funding and had Dylan been assessed? Section 139a is a clause in the 2000 Learning and Skills Act (superseded by the 2014 Children and Families Act which comes into force next month) which requires local authorities to provide education and training to young people with a learning disability up to the age of 25. Local authorities, apparently, were required to conduct a 139a assessment of all school leavers with a learning disability.

Cock up or cover up? botanical gardens 008
I had never heard of a 139a assessment. In all my conversations with teachers, transition workers, council representatives, social workers and other parents, it had never been mentioned. Dylan’s school had completed their section of the assessment; it was the responsibility of the local authority, however, to use this to identify an appropriate educational setting. In my local authority this wasn’t happening. While educational places were being offered to young people with an Asperger’s diagnosis or at the ‘higher functioning’ end of the spectrum, Dylan and those with a similar level of need were not being offered education beyond school. Previously, some young people with high needs had been funded to take up specialist education places outside the city but the local authority had stopped funding such provision. What this meant is that support for young adults with high needs was being funded entirely by social care (and sometimes continuing health care). For some families, this was adequate; for example if a parent was at home and able to offer support or where PA support was appropriate. It was only the fact that the social care budget wasn’t enough to support Dylan for the five days I needed to be at work which brought the issue of 139a funding to light. Who knew about this? Not the parents. If social care workers knew about it they didn’t think to mention it. The Council’s legal department, in the letter to Dylan’s solicitor in which they accepted all the claims made against them before the case went to court, suggested that Dylan had been ‘overlooked’ because he was at a specialist rather than a local authority school. Well if they want to claim that let them, said my solicitor, who thought they were covering up. The man from the council who was instructed to complete the 139a assessment on Dylan as a matter of urgency assured me, however, it was just a cock-up.

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Discovering that Dylan was entitled to education funding appeared to solve the problem of the uncapped but inadequate social care budget; I could combine education and social care funding and put together a weekly programme which would meet Dylan’s needs and enable me to  work. It feels as if at this point I ought to write ‘so it all ended happily ever after’. Except it didn’t.
There wasn’t, it turned out, any suitable education provision for Dylan in the city. EFA funding (arising from the 139a assessment) could only be used at organisations which were on a list of approved ‘Natspec’ providers; in my local authority there were less than a handful of these and none aimed at adults with high need. While my local authority had stopped funding young people to attend specialist colleges outside the city, they had failed to develop any provision within the authority for young adults like Dylan. The college I thought the likeliest refused to even assess Dylan for a place. Out of interest, I asked the man from the council, what does a full time place at this college cost? I had won a point of principle it seemed; Dylan was entitled to EFA funding almost double the social care budget but there was nothing for him to spend it on.

Five botanical gardens 010
I submitted Support Plan number five in August 2013. This was an interim plan, I stressed: I was requesting support for Dylan from the social care budget while I worked with the local authority to develop suitable educational provision for Dylan. Premises had been identified. A steering committee had been set up. Somebody was (more or less) project managing. While the new provision was being developed Dylan would be supported from the education budget one day a week at a city farm. I would make a contribution too through a temporary reduction in my working hours. This would reduce the amount of social care funding requested and, once the provision was up and running, Dylan’s education-funded days could increase to two or maybe even three, further reducing the cost of social care.

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Approved.

Presume incompetence botanical gardens 011
‘Presume competence’ is a buzz phrase in the disability community at the moment; the idea is that we should not assume that because someone has alternative neurology (with associated differences in communication, behaviour etc) they are not competent. My experience with adult autism services in the last year has led me to presume them incompetent, i.e. not to assume services meet need (that is not a slur on individuals but the system). While I don’t believe Dylan’s entitlement to education funding was deliberately concealed, nor do I accept he was forgotten; it was a consequence of a fragmented system which put services not service users at the heart of decisions. I have told this story as a narrative of numbers to illustrate the way decisions were made about Dylan’s care on  economic grounds. While provision is clearly subject to funding constraints, we cannot allow local authorities to cut statutory services in order to balance budgets. There was never any doubt about the level of support which Dylan needed; the issue was which sector was going to take responsibility for funding it. The needs of autistic adults are complex and will not be met unless professionals from the health, education and care sectors have mechanisms for talking to each other; perhaps the Children and Families Act, with its proposal for education, health and care plans, will help address this.

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Last month, after my long battle to secure education provision for Dylan, I heard that he had been approved for health care funding. To qualify for continuing health care funding you need to score two ‘As’ on an initial assessment tool. It is difficult to get such scores; you are in the hands of the assessor and challenging their judgement is complex and time consuming. Nonetheless, alongside my attempt to secure education funding, I tried (I have written a little about this here). I’m glad I did; Dylan will now finally be able to access the provision he needs. While it means he is no longer in need of the social care and education funding I fought so hard for,  others will benefit from the education provision being developed in the city as a result of his case.

Was it worth it? The cost to myself and Dylan has been enormous; if you’ve been following this blog you’ll know that Dylan has developed behaviours recently and it’s possible these are a result of his difficult year. The events narrated here cover the last 12 months but I started planning for transition when Dylan was 14; he is 20 now and it’s not over yet. I’m exhausted. Had the original Support Plan been accepted – at just 12,000 over the budget cap – much uncertainty, stress and damage might have been avoided. And, ironically, it would have been cheaper. But was it worth it? Yes.

* Notes: Some of the details of Dylan’s case will be superseded by the 2014 Children and Families Act. However the Act is not yet in force and interim arrangements require local authorities to continue to assess school leavers with a learning disability under clause 139A in order to provide an appropriate education placement. If your child left school this summer you might want to pursue this. Although the mechanisms are different under the new legislation, the principle of access to continuing education for young adults with a learning disability remains. Some useful resources include:

  • HMSO (2000) Learning and Skills Act
  • HMSO (April 2014) Children and Families Act
  • Department for Education (April 2013) Section 139A Learning Difficulty Assessments Statutory Guidance for local authorities
  • Department for Education and Department of Health (April 2014) Implementing a new 0 to 25 special needs system: LAs and partners
  • Department for Education (August 2014) Special educational needs and disabilities: a guide for parents and carers
  • Natspec:  the Association of Nationalist Specialist Colleges

The legal firm which were so helpful in Dylan’s case was Irwin Mitchell; my thanks to his superb solicitor. * All the images were taken by Liz except the closing photo which was taken by a member of staff at the day centre Dylan was finally allocated.  The opening photograph was taken on the day Dylan left school in August 2013. The other photos were taken in the Botanical Gardens, a place Dylan loves.