The Humber Bridge

humber5Before I had my own family I used to say that for every child I gave birth to I would adopt another. This seemed a small but realistic way of balancing the desire to have a biological child with the desperate need of already-born children for a family.

After Dylan was diagnosed I gave up my pledge; with an autistic child to care for, I told myself, it wouldn’t be fair and, anyway, I probably wouldn’t be approved to adopt. Later, other promises would be adjusted. I couldn’t, I realised, volunteer regularly or even for Crisis at Christmas; Dylan needed me and it wasn’t possible to undertake such commitments with him in tow. So I made donations to charity instead; I might not be able to give my time but I could at least do this.

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‘I’m thinking of volunteering’ I said to my daughter the other day. Just weeks since Dylan’s residential placement had been approved and already the idea had risen to the top of my newly-shuffled priority pack. ‘Good’, she said, ‘I’m glad to hear it’. My daughter understood the new imperative; not just my earlier idealism but the desire, now that Dylan is receiving help from society, to give something back.

I’m not sure the job I do has given me many useful skills but I’m hoping that I acquired some from my years supporting Dylan. At the moment I’m open-minded about what I might offer but am drawn to end-of-life care. The only thing I would rule out right now is autism. ‘I need a break ‘ I told my daughter. But it’s not just that. If I volunteered my time to autism I might as well be with Dylan. It has to be something different; a bit like a collective where you trade and exchange.

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humber bridgeI remember making the case for collective child rearing in an undergraduate seminar in the early 80s. I can’t imagine how we got on to the topic but perhaps the discussion arose from the study of a political thinker. Rousseau maybe or Dewey. I’m not sure. What I do remember, though, is that I was a lone voice that day. After arguing valiantly but without effect I turned to Dr Robinson and appealed for his support against my peers. But he wouldn’t give it; having children, he told me, was not motivated by a will to improve society but by the desire to perpetuate the self.

I understood this a little better once I’d had my own children. Perhaps having an autistic child added to my growing realisation that families are private entities, managing themselves according to their own value systems. An autism diagnosis forces us to confront aspects of our practice which might previously have run humdrum and unexamined. I found myself weighing the cost and benefit of every decision: whether to be relaxed about diet or intervene; how to manage meltdowns; when to use directive approaches and when to be non-directive. Sure there was professional advice for parents but ultimately the choices were my own; there is thus no less variation in how autistic children are raised than in that found across all families.

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For some parents the desire to raise a family without interference from the outside world is strong. I suspect there are different reasons for this: the parents whose own upbringing was so troubled they want to do things differently, their own way; or the mother who has so little power over her life she wants control of the way her children are raised at least. I once knew someone like this. I wasn’t close to him (he was the husband of a friend) so didn’t have a context for his parenting except that it was NYC in the early 90s. Every morning he would take the bus from their Central Park apartment and head downtown with the baby. Why is it, he asked me when I visited, that people think it’s OK to interfere in your life when you have a baby? A private man, he was not enjoying the way fatherhood had turned him into public property; strangers, he complained, would stop to talk at and even touch his son. These unsolicited approaches were a source of great irritation to him.

I remember him telling me how the baby had been crying one day while they were riding the bus. A woman seated behind started to dispense advice. He needed to take the baby out of the sling. He should give the baby a pacifier. That baby needed to get into a routine. Suddenly, he told me, he’d had enough. He took out a pad of paper and a pen and thrust them at the woman. Lady, would you write your name and telephone number down here for me ? Because the next time my son’s crying at 3am in the morning I’d like to call you up and ask your advice. He reported this with glee, happy he had found a way to tell this member of the public to butt out of his life.

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humber8To make a call for help at 3am in the night you have to be desperate and my friends were not – they were simply new parents dealing with the usual demands of a not-unusually unsettled baby. A desperate night is one when you are scraping poo off the walls yet again (I haven’t done that for years but will never forget when I had to, repeatedly). It is when you have lain next to your screaming child for five hours and they are still screaming. It is when you fall down the stairs because you are dog-tired from weeks of being up all night. It is when you drive 100 miles in darkness trying to settle your crying child. It is when you sit in the garden or barricade yourself in your room because you fear you will be hurt by your anxious son whose needs you have failed to understand well enough to help and who is in meltdown, a danger to you and to himself. It is when the house finally falls silent and you go to bed and cry yourself to sleep because you couldn’t be better or make a difference. It is when you stay up all night googling for answers or writing long letters, asking for help, which you know you will never send.

These are just some of the ways to become desperate in the night. There are others (some harder). I’ve heard parents of autistic children say that you only get help when you get desperate. I’ve said it too. It’s right, of course, that scarce resources should go to those in most need but it scares me (I mean it really did scare me) that the trigger for allocation is a crisis.

Some years ago Dylan and I went for a walk one summer with two autistic boys and their mothers. I had been invited by the woman whose child’s 12th birthday we were celebrating but didn’t know the other mother. Still, we talked the same easy language that parents of autistic children tend to when they are together. At some point we swapped stories about autism services within our Local Authority. They just don’t seem to hear, the mother I had just met complained. They don’t listen because they think I’m coping. But I can guarantee that if I go within 50 miles of the Humber Bridge they’ll listen.

We didn’t have to ask her to explain.

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humber4The Humber Bridge is a beautiful bridge over a wide river in the east of the county where I live. But in 2006 the way I would think and feel about that bridge changed forever when a mother and her autistic son climbed over the railings and down onto the underbelly of the bridge and jumped.

Alison Davies and her 12 year old son Ryan were caught on CCTV camera moments before they fell 100 feet to their deaths on Easter Day. The Humber is a tidal river with sands which shift so dramatically it has to be re-charted each week. In such conditions, finding Alison and Ryan was difficult. It was four days before Ryan’s body was discovered, upstream of the bridge, and it would be some time before his mother’s body was found. In the days after the tragedy, while the police waited for the river currents to surrender Alison, the media speculated on what had led her to the bridge.

CCTV footage had recorded the pair arriving, smiling, at Hull railway station in the morning. They no longer lived in the town but, we would learn later, it was a place where they had once been happy. There were reports of an interrupted 999 call having been made from Alison’s mobile phone moments before a camera on the bridge recorded them falling – not together but 8 seconds apart.

We will never really know what happened that day or why. The tragedy was, commentators agreed, a result of the strain Alison was under as a single mother of an autistic child (Ryan’s diagnosis was Fragile X Syndrome). The Independent reported that the closure of a parents group had represented a significant loss to Alison who had no other support mechanisms apart from limited help from her mother. A friend of Alison’s, also the carer of disabled children, said: “She just didn’t get the help she needed. You have to fight for everything when you are looking after children with disabilities because if you don’t fight for it, you don’t get it.”

And yet, it seemed, in the days before the tragedy Alison had been feeling quite positive. She had started a new job, passed her driving test and was tackling some DIY projects at home – challenging for anyone, never mind a single parent with caring responsibilities. The picture which emerges from neighbours is of a well-liked mother and son with an active and happy life. As the newspapers later reported, however, this was a veneer; Alison Davies was, in reality, struggling to care for her son.

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humber6Sadly there have been similar cases, often involving mothers who had appeared to be coping. I have listened to people express astonishment at such tragedies and suggest that had they only known they would have helped. I remember reading a request by one woman, in the aftermath of a similar case in America, that mothers bring their autistic children to her, rather than kill them, ‘in the middle of the night if need be’. 

So we are back to that call at 3am (the one my friend’s husband threatened the woman on the bus with). Such night calls may not be easy to receive but they are even harder to make in a society which does not encourage collective responsibility for parenting. And if you are a family in crisis there is a tipping point beyond which it becomes hard to even pick up a phone; holding on to any sense of your own agency, or a belief in the power of others to help, is difficult when you are at the bottom. In a note which Alison Davies left she referred to having failed as a mother and of the need to ‘end the pain’. She didn’t want her family to ‘have to worry any more’ about her and Ryan. ‘Clearly Alison was in distress’, a police investigator observed: ‘clearly she felt a burden and clearly she felt that she wanted to relieve her family of that burden’.

I recognise some of these feelings: doubting you will ever get the help you need; not wanting to ask for it; feeling helpless; wondering if your child might be better off without you; the impossibility of life alone. When you do your best and it doesn’t seem to make a positive difference to your child you can question whether there is anything anyone can do. You are the mother. You love your child more than anyone else in the world will. If you can’t help, who can? These feelings are natural and some may even be necessary. But if they combine in a particular way on a particularly bleak day or night, their impact can be devastating.

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humber3Later, in August, the coroner would refer to Alison Davies’ ‘life of despair’. Although she was struggling to cope with her son’s increasingly violent attacks, Alison was determined that Ryan should not be taken into care. ‘She loved Ryan so much and she tried so hard; her bank of resilience had been depleted ‘, her family said in a statement following the inquest. Alison was, they added, ‘a wonderful mother’.

It emerged that Alison had a history of depression and suicidal tendencies which made her and Ryan particularly vulnerable. Her family had intervened to help the mother and son on previous occasions. The call from Alison’s mobile phone had, apparently, been made 30 minutes before the tragedy but was not effectively followed-up. The inquest was told that Ryan was not pushed but jumped independently; it was noted however that Ryan had no understanding of danger and would have jumped, with encouragement, if told he could fly. The second person falling from the bridge was Alison. The coroner recorded a verdict of suicide on her and a verdict of unlawful killing on Ryan.

During media reporting of the tragedy and inquest there were frequent references to other such cases, no less tragic. The Guardian reported that the incident had led to calls ‘for more respite care for families with autistic members’. The Independent, meanwhile, quoted a National Autistic Society spokesperson as saying that: ‘if one good thing comes out of the tragedy it is an awareness of the lack of support for respite care. Local Authorities are reluctant to pay for support.’ Other newspapers reported sympathetic interviews with parents of autistic children, explaining some of the stresses of living with autism and the benefits of regular respite care.

I would hazard that every one of these tragic cases could have been averted had there been a timely response to the family’s need before they reached the tipping point. For an autistic child to be safe and to flourish, the family that provides care also needs to be well. Parenting an autistic child can become more challenging with adolescence and adulthood but instead of increasing with age, support falls away. Is it any wonder that parents are pushed to breaking point, especially if they have few support networks or are battling an existing mental health condition? I’m one of the lucky ones. I’ve got support. But I would be lying if I said that I’d never, sometimes, tried to think of places where Dylan and I had been happy.

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humber7In the US, where there have been similar cases, there has been much discussion in the press and much condemnation of the mothers on social media. I understand this response but worry that a backlash against individuals obscures the spotlight from shining, as I believe it must, on all of us. I am not questioning that Ryan was unlawfully killed. Nor am I suggesting that Alison’s actions could ever be justified or excused. I do believe, however, that we are all involved in these tragic deaths because, in a civilized society, caring for vulnerable children and adults is a responsibility we share.

While it is not natural or intuitive for us to adopt a collective approach to parenting, we need to be better at offering and receiving support. Alison Davies seems not to have found this easy – certainly she was reluctant to let others care for her son. And who can blame her? There are so many awful reports of care standards that it is hard for parents to trust their children to others. But instead of closing down specialist services because they have failed in the past, we should be improving them. If we put our energy into achieving excellence in the care system, with effective mechanisms for supporting families before they are in crisis (without creating a sense of failure or fear in parents that they are letting down their child) then we might help avert at least some of these tragedies.

The more individualistic a society, the less likely it is that the vulnerable will survive; certainly Dylan’s disability means he will only ever flourish in a society that prioritises social care. If we are to emphasise the importance of human flourishing, rather than human capital, we have to develop more cooperative and community-based approaches to supporting one another. With so much concern about our ability to meet the cost of an increasing care sector, developing sustainable models of support has to be a priority. I would hazard that those who receive support from others, offer it in return. Hopefully, as I adjust to no longer being a full time carer, my own life will bear this out.

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Disturbed by the tragic case of Alison and Ryan Davies, I kept news reports of these and similar stories determined that one day I would write something. I haven’t got around to the poem I thought I might write but let this stand, instead, as my small wreath. RIP.

Acknowledgements:

I have had these images of the Humber Bridge on my PC for years. I’m unsure of the sources now but hopefully they are from public domain sites such as Wikipedia.  In this post I refer to media cuttings of the incident (April 2006) and the inquest (August 2006) from The Independent, The Guardian, The Mail Online and the BBC.

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

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

References

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

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

More Difficulties: ‘independence’ and ‘competence’

material literacy 008In my last post I challenged the way we conceptualise ‘friendship’ suggesting that our dominant model is not only inadequate in relation to autism but that it can problematise children more generally, particularly within educational environments. In this post I identify difficulties with two further concepts, ‘independence’ and ‘competence’.

‘Independence’ is a concept which is frequently applied to the disabled community by policy makers, professionals and service providers. The use of the term has already been eloquently challenged by others (I provide links to a couple of examples at the end of this post) and my intention here is only to add a couple of reflections of my own. The other concept, ‘competence’, is used by the disabled community itself (as in ‘presume competence’) but is a term which I argue may also be considered problematic.

Defining independence

1. free from control in action, judgment, etc; autonomous
2. not dependent on anything else for function, validity, etc; separate
3. not reliant on the support, esp financial support, of others
4. capable of acting for oneself or on one’s own
5. providing a large unearned sum towards one’s support (esp in the phrases independent income, independent means)
6. living on an unearned income

[Collins English Dictionary (mathematical definitions omitted)]

August 2012, Monsal and Grindleford 005Policy makers and service providers bandy the word ‘independence’ around constantly. Dylan, I am told, must be supported to be an independent adult. Since he left school he has received a personal budget which is intended to facilitate such independence. I don’t think I’ve filled in a form, attended a meeting or read a Dylan-related document where the word ‘independence’ hasn’t been used at least once. I used to interject every time the word was used: excuse me but I don’t think you understand – ‘independence’ isn’t an appropriate concept in relation to Dylan. After a while I realised there wasn’t any point; ‘the I word’ was on a checklist and would be raised so a box could be ticked.

The nature of Dylan’s disability (the particular combination of his autism and learning disability) mean that he is not now (and probably never will be) able to act autonomously or separately or without support from others or alone. Dylan meets only one of the above definitions of independence and then not in the sense intended; ‘living on an unearned income’ usually refers to stocks and shares not to disability benefit.

Independence and economics

August 2012, Monsal and Grindleford 007I like the definitions of ‘independence’ provided by Collins because they include reference to finance and economics. And the obsession with supporting disabled people to achieve independence is, I would argue, solely about resources: the reason policy makers, social workers and civil servants want autistic people to ‘achieve independence’ is because it is cheaper. If Dylan and his peers can be independent (even for part of their lives) then their support levels can be adjusted and the cost of care reduced. Under the guise of promoting independence, savings in social care are made.

August 2012, Monsal and Grindleford 008Actually, the independence we urge on neurotypical young adults is probably also chiefly economic. When we tell our teenage children that they must learn to ‘stand on their own two feet’ what we are usually talking about is financial not practical or emotional independence. While the drive for such independence may be appropriate for many of us, young adults with an Autistic Spectrum Condition need support with their lives to varying degrees. In the UK the preferred approach to achieving budget cuts is to reduce support to those judged least in need. Far from supporting independence, however, such cuts can jeopardise the ability to live semi-independently in the community as one of the links at the end of this post illustrates.

Interdependence and community

independence 013But my concern about the conceptualisation of ‘independence’ is not only that the real agenda behind it is economic. At a more philosophical level I am troubled by the suggestion that ‘independence’ is something inherently valuable which we should all be aiming for. Surely we should be emphasising our interdependence and promoting relationships which are mutually supportive? Should we not be encouraging members of society away from the sense that they are self-sufficient and self-sustaining, independent of the society of which they are part? Isn’t that the sort of thinking which allows communities to isolate and fragment?

And in any case, what exactly is the problem with ‘dependence’? Aren’t we all dependent on others for some of our needs as human beings and members of society? Dylan might be more dependent on others than most of us, but that doesn’t make him any less precious as a human being. I am deeply uncomfortable with the apparent pressure on us to measure somebody’s worth in terms of their independence from others; being emotionally, practically or financially dependent on others does not make someone less valuable.

Defining competence

As it happens one of the historic definitions of ‘competence’ relates to economic independence though this is not the sense in which I am interested in the word for purposes of this post.

1. the condition of being capable; ability
2. a sufficient income to live on
3. the state of being legally competent or qualified

[Collins English Dictionary]

independence 015‘Competence’ is increasingly applied by the autistic community (particularly within the US) in the sense of being capable; we should, it is suggested, ‘presume competence’ in our autistic children, particularly those who do not speak. Not being verbal, it is pointed out, is not the same as not being capable; the dangerous default position of the past has been to assume that an autistic child who doesn’t speak is intellectually impaired and incompetent.

Some marvellous and moving stories have emerged from those parents and professionals who have ‘presumed competence’ in autistic children; the shift in attitude from presuming a child cannot do something to presuming they can has produced startling outcomes for some families, often via ‘facilitated communication’ (there is a link to one such example at the end of this post). These stories have also, however, created something of a backlash from other parents, particularly those caring for autistic children with a significant learning disability or co-morbid condition.

To do and to be

independence 011For some parents, presuming competence of their children is hard because it can set up the potential for failure. As the parent of a young man with a significant learning disability I understand this concern. I’m not suggesting, however, that we should start from the assumption that a child cannot achieve; for me, the difficulty is in the use of the word ‘competence’ rather than with the risk of disappointment. For just as I don’t think being independent makes somebody a more valuable person, so I don’t believe that a competent person is any better than somebody who can’t do or say something. So my concern with ‘presuming competence’ is that we are giving status to achievement and suggesting that a person’s worth is measured by their ability to achieve.

But perhaps the word ‘competence’ just rattles me because in my professional field it comes with negative connotations. In England in the early 1990s there was a move from Initial Teacher Education in the Universities to Initial Teacher Training in schools. As part of this policy drift a curriculum for teachers was established at the heart of which were a set of professional competences. Teacher educators argued at the time (and since) that these competences reduce the work of a teacher to a set of instrumental skills while not capturing the philosophy of being a teacher. When working with children and young people, they suggested, teachers draw on values and beliefs about education which cannot be reduced to a set of ‘can do’ competences. From such a perspective, becoming a teacher is not a question of ‘to do’ but ‘to be’. Similarly, Dylan is a valuable person and human being because of who he is, not because of what he can do.

Presume nothing

independence 012Perhaps, as a result, I resist the word ‘competence’. The Collins dictionary offers another definition of ‘competence’, however (the omitted definition 4 relates to embryology):

5. (linguistics) (in transformational grammar) the form of the human language faculty, independent of its psychological embodiment in actual human beings

Perhaps it is linguistic competence, specifically, which parents are being encouraged to presume in their children by others in the autism community? This seems to me to be likely given that the lobby for presuming competence is often allied to the Facilitated Communication movement. Perhaps I am being a bit pedantic when I suggest that, if this is the case, it might be helpful if we referred to ‘presuming linguistic competence’ rather than presuming competence more generally?

independence 009

Am I comfortable presuming linguistic competence of Dylan? To some extent. I have tried to facilitate Dylan’s communication in various ways and have provided him with a range of opportunities: signing, letters, pictures, a keyboard, symbols, talking software. Some of these have helped but I still have the sense that Dylan’s linguistic competence is compromised, perhaps by childhood meningitis (which you can read about here).

Having said that, Dylan’s receptive language skills continually surprise me. A few weeks ago, for example, I was listening to BBC Radio 4 (a news and current affairs channel) while driving Dylan to his day centre one morning. A couple of politicians were engaged in the usual bluster. ‘You’re barking up the wrong tree there’ one of them said to the other. From the back seat Dylan added his voice: ‘woof woof, woof woof’.

miscellaneous 001I laughed so hard. I had no idea that Dylan listened in to the radio or was capable of processing the noise of a broadcast, even at keyword level. I have always tried to keep an open mind with Dylan but the incident reminded me of how important this is. My motto, if I have one, is not ‘presume competence’ or even ‘presume linguistic competence’ but ‘presume nothing’.

Useful resources

  • This link is to the blog of a parent who uses Facilitated Communication with her autistic daughter and who reflects on issues around ‘presumed competence’ :
    http://emmashopebook.com/about-2/

Images

The photographs of Dylan on climbing frames were taken at school and in Grindleford playground. Dylan went to a climbing centre with a group from his day centre recently and as the photos show this was a great success. Coming down was, apparently, more challenging than going up.  The final photograph is of me on a glass walkway.

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.

139a botanical gardens 007
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.

76, 000 botanical gardens 009
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.

40, 075
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.

Two DSCF3966
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.

‘Challenging Behaviour’: the elephant in my room

Kent August 2012 158 The word ‘blog’ derives from the phrase ‘web log’ which suggests an online diary. In this sense I’m perhaps not a real blogger; while my posts sometimes include background information about on-going aspects of Dylan’s care, I tend to foreground reflection rather than diary information. Last week, however, this proved challenging: I had planned to reflect on accessing short break provision but was overtaken by real-time events when Dylan’s short break provision broke down while I was writing the post.

How to maintain a reflective voice when you’re in the thick of it? The material which I thought was illustrative background (i.e. Dylan’s experience) wanted to move centre stage into the foreground. I tried to maintain my reflective distance last week but it meant there was a bit of an elephant in the room.

Stock take

If you have been following this blog you’ll know that I’ve been battling with the funding and policy environment on Dylan’s behalf this year. In England, currently, autistic adults may be eligible for support from one or more of education, social care and continuing health care budgets. There are, however, a number of problems (at least in my Local Authority) with making information about these systems available to families.

All school leavers with a statement of Special Education Need (SEN) for a learning disability are entitled to continuing education. In the very near future I will focus a blog post on this because it has significant implications [I have since done this: you can read about it here]. It is my contention that Local Authorities are currently failing in their statutory duty to provide this, particularly to people who present with high or complex needs. Dylan was not offered any education when he left school last summer and much of my effort in the last year has been directed at lobbying for the development of appropriate local provision. Social care and continuing health care funding may also be available for young autistic adults depending on level of need (determined by assessment) and I’ve also been pursuing these over the last year.

In a recent post I compared these three funding streams to a three-legged stool. In Dylan’s case, the stool was broken: nine months after leaving school he still did not have access to the education provision to which he was entitled; his continuing health care needs had not been assessed; and his interim social care payments (from which I was paying for a day care centre and one overnight break a week) had stopped without warning or explanation. I had been living in a place of quiet despair about Dylan’s care all year but in April I wondered how much longer we could keep going.

An update

DSCF1340At the end of last month Dylan’s social care payments were reinstated (after repeated phone calls, emails and a letter to Nick Clegg, my MP) on an interim basis until the end of August. Although this is only temporary funding it is a huge relief; without it Dylan would not have been able to access any day care or short break provision over the summer.

This meant that I could focus on developing a more permanent plan for Dylan from September (which you can read more about here). The assumption, over the last year, is that this would need to involve a combination of education and social care. Progress with the development of appropriate education in the city is, however, slow and out of my hands. Will it be ready in time? I asked the man from the council couple of weeks ago. Yes, he reassured me; something would be available for Dylan after the summer. But how will I know it will be appropriate I asked if it doesn’t exist yet? Oh it will be, he said. This will all unravel in September, I thought to myself. I had no choice, however, but to plan on a promise. Or so it seemed. But then last week (o halleluiah!) I heard that Dylan had been approved for continuing health care funding. Hopefully I am near the end of my long journey to secure appropriate support for Dylan as an adult.

The Elephant

DSCF1341This is breaking news; I hadn’t heard that Dylan had been approved for health care funding when I wrote about short break provision in my last post. The news about Dylan’s funding may alter the approach to short breaks I take in the future but the current crisis (i.e. the one which emerged last week) is about providers rather than funding.

I was so concerned to stay focused on the long view of short break provision last week that I dodged the current crisis a bit, or rather told myself that I wasn’t yet in a position to reflect. But the situation is this: the short break providers have decided that they aren’t able to accommodate Dylan any longer given his needs. Dylan’s short breaks were located in a small residential house which wasn’t a suitable environment, particularly given the profile of other service users and staff capacity. As I noted in last week’s post I was sceptical from the outset about the suitability of the provision.

Needs change and sometimes in a way that requires more not less support; the reality is that placements can and often do break down. I’m glad that Dylan’s short break provider was supportive and sensitive throughout: they communicated honestly; never criticised Dylan; focused only on their capacity to support; and responded to my request for emergency cover for this weekend so I can fulfil a long-standing engagement.

I can still see an elephant

Kent August 2012 163But why did the placement break down? Well it’s jumping. That doesn’t sound very challenging I know but actually it is. I’ve written a bit about Dylan’s tendency to jump here as part of a review of Naoki Higashida’s The Reason I Jump. If only Dylan’s reasons were the same. I don’t think they are but I don’t really know what does cause Dylan to jump. I’m baffled. [I have subsequently reflected a bit more on Dylan’s jumping and suggest a surprising possible explanation here] .

Dylan has always jumped a bit; in the past I’ve assumed this was frustration at not being understood or at things not happening as he expects. I’ve worked on the assumption that behaviour is communication and if Dylan jumps then the onus is on me to find a way to understand what he needs. I like the expression ‘behaviour which may challenge’ as it acknowledges that what one person finds unacceptable may be tolerable to another. I have tolerated Dylan’s jumping in the past. I don’t mean to suggest that I never intervened; I have had a long campaign about not jumping in upstairs rooms. I have spent years flying up and downstairs to respond instantly to Dylan’s jumping. The behaviour may not always be appropriate but it has never been challenging in the past. Recently, however, Dylan’s jumping has become much more difficult in that it is out of control and, given his size and strength, potentially dangerous. I’ve been responding to incidents on and off for three or four months now, without significant concern, but like the elephant in the room it is no longer possible to ignore.

I’ve started a chart. This makes me feel as if I have my toddler back again; it’s something I did when Dylan was little. So far the possible triggers for Dylan’s jumping include: Tuesdays; really sad scenes in certain films; change of routine; lack of routine; and change of support person. However, the GP suggests it could be neurological (the jumping is often preceded by a trancelike state). Equally, it could be his age: many teenagers and young adults develop behaviours that may challenge – it is not exclusive to autism. Twenty is a difficult age: that’s certainly when I was at my most difficult. The possibility that there could be an internal trigger makes me feel a bit helpless. If it were an external trigger – something in the environment – then if I could only identify it I could try and help. Currently, though, with incidents unpredictable but happening every other day and in the community as well as in the house, there are significant implications for Dylan’s support [I reflect further on Dylan’s charts here and here]

Becoming an elephant

I cannot help but be struck by the serendipitous timing of Dylan’s funding being confirmed amidst all this. The behaviour has implications not only for the type of support Dylan receives but also his weekly activities and risk assessment. The coincidence of need and funding has, for once, been helpful. I will need the strength and skin of an elephant to support Dylan through this though; the sense that I can no longer reach or make a difference to Dylan when he is consumed by the need to jump is very difficult. I try to remind myself that many parents, at some point, experience such feelings of helplessness about supporting their growing child. As Dylan becomes an adult he will no doubt continue to need different types and levels of support; perhaps I have done as much as I can, for the moment, by securing the funding which will allow him to access this.

*

The photos were taken at zoos in Warwickshire and Kent during 2012-13.

For an updated summary of my battle to secure adult-sector provision for Dylan please see this post:

Autism, Blackbirds, Resilience

resilience 002When my daughter was six her school introduced a focus on attributes which they believed would help children to become better learners. There were five or six in total; I don’t recall them all but I do remember Perseverance and Resilience. The classroom walls were decorated with images and messages for the children: Have you tried your best today? Can you work it out another way? If you don’t solve it first time, persevere.

My daughter paid little attention to these exhortations but I was fascinated and horrified. Persevere wasn’t a word I had used much myself as a child but in adulthood I’d heard a variant of it more often than I cared. My son, I was told during his autism diagnosis, displayed perseverative behaviours. This, I discovered, referred to the tendency to do things repeatedly, or to become trapped in a sequence of rituals and unable to break the pattern. So I was fascinated that this root word Persevere, which I now associated with autism, was displayed with such enthusiasm on my daughter’s classroom walls.

And horrified? Because qualities like ‘perseverance’ and ‘resilience’ , while worthy, seemed to me to be things which grew from adversity and struggle. I wasn’t sure that I wanted my six year old to have to develop such attributes quite yet. And I wasn’t sure, either, that they were qualities which could be drawn out through instruction – we can’t tell someone to be resilient can we? Isn’t this something we learn through experience?

The Blackbird

images7ISO4AZARecently I’ve been writing posts reflecting on early intervention in autism and whether or not it made any difference to Dylan. As part of that series I had planned to discuss dietary interventions this week. However, unfolding events presented a more pressing focus. ‘There’s a blackbird in this’, I said to my osteopath, telling her what had happened.

I set myself the rule when I started this blog that I would only write posts which had something to say. That is to say, I wanted to share reflections on learning rather than simply describing my experiences. For me, the purpose of the blog is to engage in transformational thinking; making connections and associations between different phenomena, conjuring with the evidence to see something in a new light. This, I think, is what poets do as part of their writing practice and the habit of it influences my parenting of Dylan.

I think this is why so far I haven’t posted on the topic which triggered my setting up the blog in the first place. I could share practical information about transition to adult services, and describe some of the struggles which Dylan and I have had, but until I’ve found a fresh way of looking at these experiences I am not sure how helpful sharing them would be. I’m saying this as a prelude to my summary of the week’s unfolding events; I need to give some information about transition, but don’t want to get too much into the detail of it because I want to stay focused on that blackbird.

The Unfolding

In the UK, adult autism provision draws on three funding streams: Health, Education and Social Care. Some people are assessed as requiring a combination of social care and health while others qualify for only social care (to different degrees, depending on an assessment). All young people with a Statement of Special Educational Need (SEN), however, are entitled to 0-25 years education provision. Many adults with an autism diagnosis, and all those with a learning disability which is identified on a Statement, are therefore in theory entitled to education – though in practice may not be receiving this if the Local Authority doesn’t have any to offer and refuses to fund out-of-authority provision.

As the mother of a young man who is at the ‘severe’ end of the autism spectrum, and who also has a ‘severe learning disability’ and ‘severe communication impairment’ identified in his statement of SEN, I have spent the last four years campaigning for provision for Dylan within all three funding streams. I started this process while Dylan was still at school and for the last 12 months have thought of little else. Dylan left school in July 2013 and nine months later he is still receiving only interim social care. I will write more about this when I’ve got something other than frustrated descriptions of the process to offer; I give this summary only as background for this week’s post.

The Wooden Stool

I remember one of the doctors in my college Health Centre telling me that life is like a wooden stool. How we feel, he said, depends on our health, our work and our relationships. He likened those three factors to the legs of a wooden stool, arguing that if just one of those legs were broken we would be unstable. I’ve remembered his metaphor of the wooden stool over the years. Steiner philosophy also has a three-fold maxim about health; we must be thinking, feeling and willing, Rudolf Steiner argued, to feel fully alive. Recently, I have come to think of the three strands of health, social care and education as Dylan’s wooden stool.

Stand On One Leg (and touch your nose)

The Continuing Health Care assessment of Dylan for which I had been waiting for over two years was finally scheduled. I have been chasing this since January 2012. That sounds incredible I know but I’ve just checked the date. To even qualify for this assessment you have to first get through a diagnostic test, which is completed by a social worker. Dylan’s diagnostic, which was done by a social worker who had only met him briefly, resulted in him not being referred for assessment initially. I thought the social worker had under-assessed Dylan’s needs in the communication domain and complained, as a result of which Dylan was promised a full assessment.

Imagine my dismay when I realised, last week, that the appointment I had finally secured was not in fact for a full assessment but for a repeat of the diagnostic – and, again, with a social worker and nurse assessor who had not met Dylan. Imagine, too, my despair when parental and professional (Speech and Language Therapist and Occupational Therapist) judgements were over-ruled at the meeting. The same scores were entered as before. So a young man with no functional language – who doesn’t sign or speak and who cannot ask for the toilet, say he feels unwell or tell us what he wants – has only moderate communication needs and doesn’t qualify even for assessment.

Stop Rocking

Nine months after he left school, Dylan still has no education provision; he spends 5.5 hours a week at a city farm which he enjoys and which I’m promised will be the basis for his education. However, we are a very long way from the promise; it is not yet ‘education’ and it is not enough. Even if one day it becomes those things, the logistics of supporting Dylan to the setting are such that I could not continue to do this while working full time. This month, my final attempt to find a way of working while supporting Dylan was thwarted when a local provider refused to even assess him.

Stool On Three Legs Please

While I’ve been battling for education and health funding for Dylan he has been on an interim social care budget. Dylan’s level of need is high (he requires 1:1 support and 2:1 support in some contexts) and this is required for five days a week while I work. The social care budget alone isn’t sufficient or adequate to meet Dylan’s needs but that is what we’ve been managing on since Dylan left school. Imagine my alarm and anxiety when, without warning or explanation, Dylan’s regular payment reduced this month from its usual amount to only £158.86. To put this in context, day care costs £160.00. So that monthly payment will not last a day.

Perseverance

I felt disappointment and anger after the continuing health assessment. I was frustrated when the local education provider refused to assess Dylan. When Dylan’s regular payment wasn’t made, and repeated attempts to find out why went unanswered, I felt hopeless. I felt like a six year old struggling for an answer.

                              I can’t do this it’s too hard.

                                                                                           I give up.

                                                                           What’s the point? I’ve tried everything I can think of.

                                         It won’t make any difference.

                                                                                                                                  I’m tired.

Around the Table

I am not alone. There are other families in equally difficult and worse situations than myself and Dylan. In a strange way, knowing this helps. There is a sense of support and community. Last week another parent organised a meeting for anyone in the city who was going through transition and feeling anxious or unsupported or confused. I suppose we were a self-selecting group in that people who are happy had no reason to attend, but even so we were a table of woe.

Somebody reported having called the duty social worker during a weekend for support with a crisis situation; their call wasn’t returned until Monday morning. One autistic adult was in supported living accommodation but with no access to activities. Another school leaver was in unsuitable accommodation. None of our children were receiving adult education. Some of us had received carers’ assessments, some of us were without support. Some of us were desperately in need of respite. We have all managed for 20 years or more and are still trying our best to secure resources and support for our adult children.

I thought we all seemed exhausted, frustrated and anxious but also passionate, caring and committed. All of those descriptions – exhausted, frustrated, anxious, passionate, caring, committed – could equally be applied to professionals. Educators, health care professionals and social workers share these things with us. Parents do realise this I think; it is the system which is not fit for purpose, not the professionals who work within it.

Resilience

black3The events of last week reminded me that, as well as the attributes listed above, parents of autistic children need perseverance and resilience in abundance. In the face of scarce resources, inadequate provision and poor support, we have to persevere with our questions, requests and demands for provision if we are to support our children into adulthood – and we have to be resilient when we get knocked back, again and again.

I wrote the poem below when Dylan was three years old. It dates from a time when I was working on an intensive home education programme with him.  I was going to include it in my post about early education intervention; actually, I was going to include it as an example of what I wouldn’t do with hindsight, if I had my time over again, because it describes me making efforts to teach Dylan things which I now think should not have been a priority. I have very vivid memories of sitting at his blue plastic table with him, working in ten minute bursts through the day. It wasn’t an approach I would recommend now.

I’ll come back to that when I return to my posts on early intervention. What interests me about the poem here is the resilience of that blackbird. I don’t think I realised, when I wrote it, that the poem was about resilience; that feels like something I only really understood this week.

Blackbird

I have broken things down simply.
With the patience of one hundred pictures,
the silent scribe of my hands in air,
through the range of my voice,
the tableaux of gesture and mime,
I have repeated them again and again.
Today, after twenty-two weeks
of trying to teach him that two follows
one, how to curl his fingers
round a pen and shape his lips to oo
and mm, he sits at the table rocking –
dangles his hands before his face,
eyes glazed, while I cry.

Perhaps we will call it a day –
go out back to where the blackbird
is sounding the urgent tchich tchich tchich
of her alarm, keeping our cat at bay,
protecting her nestlings from a horror
she could not have conceived of
when the eggs were laid.
It is her persistence I admire,
the way she never lets up.
How fearless she is, upon the fence,
prepared to come within a pounce’s breath.
She knows how to live the slim chance,
instinct unswayed by poor odds, the long shot.

The Learning

Blackbird appeared again in my most recent book – not in relation to autism, this time, but in connection with the end of a love affair. Reading the poem now I see that, once again, I invest her with the quality of resilience. As the affair ends, the narrator exhorts:

Listen. Blackbird is singing still in your neighbour’s tree.
How sweetly she rhymes! Hear her voice lilt on the wind,
her soft notes scan from leaf to leaf –
blackbird_song

 

More than simply resilient, my blackbird is optimistic and rejoicing, even in the face of adversity. As I noted above, I try to keep the blog as a transformative space because that works for me and Dylan. That does not, however, mean that it is a sanitised space. Reflecting on my tough couple of weeks through the blog has helped me to connect up these resilient threads and understand the symbolism of Blackbird in my work.

https://www.youtube.com/watch?v=997RTKzc39c

References:

Elizabeth Barrett (2005) ‘Blackbird’ in The Bat Detector, Wrecking Ball Press
Elizabeth Barrett (2010) ‘Bird Evolution’ in A Dart of Green and Blue, Arc Publications