He’s Not My Toy Boy: mothers and autistic sons

Inverness 2014 084How long did it take you to learn how to communicate with him? the man asked me. I was a bit stumped: I thought the answer obvious. Perhaps he wanted something more philosophic from me, I reflected. Nonetheless I opted for the simple answer: Well I’m still learning, but all his life I suppose. I could tell I hadn’t answered the question satisfactorily. I watched the man purse his lips; he was thinking about how he could rephrase it so I would understand. I took a sip of my tea and waited. Then I saw a quiet panic in his eyes; he coughed and looked away, took another bite of his scone.

We were staying at the same hotel on a short break holiday so the man had been observing Dylan and I for perhaps 48 hours when, finding ourselves seated at the same table, he had asked his question. Afterwards I pondered it; I could sense there had been a misunderstanding but couldn’t put my finger on quite what. Dylan and I had become friendly with a couple staying at the hotel so, still puzzling over the incident, I decided to share it with Hazel. She looked at me with shrewd eyes, wrinkled her nose and said, matter-of-fact: he probably thinks you’re a couple. My jaw must have dropped. Hazel cracked a grin. Don’t worry, she said: he was probably picking up on your closeness that’s all.

The next time Dylan and I found ourselves seated with the man we made small talk for a while before he cleared his throat and ventured: I have an apology to make. I thought you were Dylan’s sister. That’s why I asked that question the other day. I didn’t realise you were his mum. You don’t look old enough if you don’t mind me saying and so I thought you must be his sister you see that’s all. I could tell his error had been bothering him and he needed reassurance from me that it was OK. But I could see through his story; a sister would also have been learning for a lifetime. I realised, however, that he must have spent time thinking up a plausible explanation for his question which didn’t involve casting me as Mrs Robinson. I thanked him for the compliment and let it drop.

*

Inverness 2014 114Later that weekend I was guiding Dylan across a road in the town when I noticed a woman crossing in the opposite direction give us a filthy look – or, rather, give me a filthy look. I am quite used to members of the public staring at Dylan; usually once they have made sense of the disparity between his appearance and behaviour their attention is warm and positive. Occasionally we encounter somebody unpleasant and then I have to consider whether and how to challenge them (sometimes they get away with it because of the distress such a challenge would cause Dylan). On this occasion, however, it was definitely me not Dylan who was the object of scorn.

Although I didn’t understand why I was a target for it, I recognised the look which the woman on the pedestrian crossing gave me. Her gaze was, I knew, about sexual identity and behaviour. I am used to being judged by other women and think of this as part of the experience of being female. Such surveillance has been well-documented; in my own field of education, research accounts of the ways in which girls ‘police’ girls have significantly enhanced our understanding of their experience of schooling. So while the woman’s behaviour wasn’t unfamiliar to me, it did strike me as odd given my age and the fact I was performing my mother/carer role.

Inverness 2014 118Nonetheless I reacted instinctively: I checked my outfit for errors and accidents. Nothing that I could fathom. As I continued down the street I watched myself passing in shop windows. I couldn’t see anything amiss. I was wearing Doc Marten’s with a simple cotton dress and raincoat. Perhaps my beret was a little jaunty but really, I thought to myself, the idea that she would see me as a sexual threat, predator or outcast was ridiculous. I couldn’t find an explanation for the look the woman had given me but it rankled and left me feeling anxious.

Only after we’d returned home did I realise what had happened that day. She thought Dylan was your Toy Boy, my osteopath said when I mentioned it to her.  I think I had known this but not let myself admit it, it seemed so preposterous. Maybe that’s why I shared the incident with her, apropos of nothing; I wanted to check out my hunch with someone whose judgement I trusted. Once I had been given permission to admit the reason, I remembered all the other people who, from the looks I had received, had had exactly the same thought.

*

Inverness 2014 156Since these incidents I have been reflecting on why members of the public might mistake my relationship with Dylan. Clearly it is an error which can only happen once a child has reached a certain age and as Dylan has recently become an adult this is new territory for me. I’m not sure whether it is an issue facing carers more generally; it’s not something I’ve heard mentioned by any I must admit. It occurs to me, however, that the error probably requires a particular set of factors to be in alignment.

Although mistaking a parent-child relationship can happen only during adult years there is probably a fairly small window for the error. The mistake, I suspect, is based on Dylan being at his physical prime and me being just beyond child-bearing years; assumptions are made by society about what is considered appropriate sexual behaviour for both those categories (non-disabled people in cross-generation relationships will be familiar with those). I am guessing that the public might not mistake Dylan’s carer as his partner when he is middle aged, and his carers are significantly younger than he is, or when I am significantly older than I am now.

As well as being age-related the erroneous assumption is probably fuelled by a parent supporting the child alone and by parent and child not being same sex. There has to be something more than this though doesn’t there? Lots of mid-years mothers and fathers walk down the street with their adolescent sons and daughters without the world assuming them toy boys, sugar daddies and cradle snatchers. The difference, then, must hinge on behaviour as well as appearance.

*

Because Dylan is vulnerable in the community I need to support him physically when we are out and about. Dylan lacks road sense so must be guided across roads and supported while waiting to cross. Because walking through public space is difficult for him, Dylan seeks physical reassurance from carers for comfort as well as guidance. When Dylan was younger I would hold his hand. Recently I have encouraged Dylan to link arms instead as this feels more adult and avoids the childlike or romantic associations of hand-holding. Dylan still sometimes reaches for my hand, however, when we are out walking and likes to link arms even away from traffic.

Dylan not only enjoys this physical contact but he uses it for purposes of communication. He squeezes my palm in different ways, for example, to initiate ‘conversation’, to ask if everything is alright or to say ‘hurry up’ or ‘I don’t like this’. He also taps me to communicate (you can read more about this here) and uses a variety of paradiddles, hugs and arm bends. While I have to be careful of Dylan’s physical strength, particularly when he is distressed, his use of touch to express feelings is a rich and valuable part of our relationship. It is this physical closeness, I suspect, which an unsuspecting member of the public could misread.

*

Dylan and I were once misread by a member of the public in a way which seemed inconceivable. One day, when Dylan was 15 or 16, we caught the eye of a senior citizen walking slowly, on two sticks, along the road where we live. Dylan and I were skipping hand-in-hand through a private alley which leads to the road (Dylan loves to skip so we do this sometimes in quiet places). As we approached, the woman lifted her eyes from the pavement, stared at us as if puzzled, then declared: Twins!

There are 33 years between Dylan and myself. As well as being a different sex, our eye and hair colour are different. If being mistaken for Dylan’s partner or sister is preposterous, being called his twin challenges identity at a whole new level. At the time I dismissed the incident as an aberration of judgement due to the woman’s age. I realised afterwards, however, that this was patronising; she had clearly seen something to cause her to think us twins. People have sometimes commented to me that although superficially Dylan and I look physically different, the link between us is clear if you look more deeply. The elderly woman had, I told myself, seen beyond the obvious; it was this, combined with our childlike behaviour in the alley, which had confused her.

Recently I have been working on a manuscript of love poems. While many writers have assembled such collections (including the poet whose name I share) my focus has been slightly different in that the poems are concerned with non-sexual love. What I wanted to explore, through these poems, was the nature of intimacy: as well as poems about a mother and child there are pieces about relationships between friends, colleagues, and a trapeze girl and her catcher. A couple of the poems concern the particular intimacy which being the carer of an adult child involves; perhaps this is what the woman in the street detected when she imagined us twins.

*

The incidents recounted here illustrate three mistaken reactions to the same relationship, each with different emotional impact and implications. While acts of public condemnation, such as filthy looks in the street, are hard to receive and difficult to counteract, the meeting with the man in the hotel offered an opportunity to gently challenge expectations. The elderly woman’s mistake may, at first glance, seem the most significant but in perceiving physical contact as denoting intimacy rather than sex she was pointing a wise finger.

What the incidents also illustrate, perhaps, is how constrained a part of British culture touch is. Physical contact in public is assumed to indicate childhood or sexual love; we accept hand-holding between parents and children but in adulthood touch is something which is reserved for lovers. Carers and disabled people challenge attitudes and assumptions every time we access the community; sometimes change is light and easy but at other times it needs a sledgehammer. If I were the sort of person who wore slogan T-Shirts I would have one made for the women on pedestrian crossings : He’s Not My Toy Boy, He’s My Son.

 

Images:

The first four photographs were taken by Hazel and others (apart from the selfie through a mirror) during the holiday referred to in this post. They were taken on the Isle of Skye, in Aviemore and at the Botanical Gardens in Inverness. The photographs of Dylan and I holding hands when he was younger were also taken on Skye (by my daughter in 2009). The final photograph was taken by my daughter in Ventnor on the Isle of Wight in 2009.

A Tough Nut To Crack: reflections on control

This week I decided to re-read Louis MacNeice’s Autumn Journal . When I went to look for my copy of MacNeice’s collected poems, however, it was missing. I once heard a psychotherapist compare the feelings we experience on losing a book with the realisation that we no longer love someone. Later, I turned this into a poem.

How It Happens

autumn journalLike you might lose a book from your shelves -
not noticing for a while (three years perhaps)
until one day you look for it.
Confident at first, you become uncertain,
discomfited. Later – frantic, obsessed -
you climb on high stools to reach
impossible shelves.
There might be questions asked.
Not just what you did with it
but when you had it last –
whether you were careless,
mislaid it perhaps.
Or did you give it away?

You might want to accept it.
Not be sure anymore,
what you liked about it or why
it was important to you once.
But something must have made you look.
A passing reference on the radio,
that small detail in an obit in The Times.
Or were you reminded by eyes or chance face
passing by? Did you hear words spoken
by another mouth – like seeing a copy
of your book on someone else’s shelf?
When you realise it’s gone can you find it again?
Get it back? I don’t know how. It happens (perhaps).

Afterwards I took to filing my books alphabetically. They’re not the only thing in my life in order now: my music is arranged Armatrading to ZZ Top; drafts of poems are kept chronologically; documents are filed by theme. My life wasn’t always like this; as a student I lived in typical disorganisation. I remember being torn off a strip by my PhD supervisor, in the run-up to submission of my doctorate, for not having kept my research records in better order.

*

books 001My use of alphabetical systems to order the environment is partly about supporting Dylan. Dylan doesn’t know the alphabet but he can memorise objects visually. He needs books and music to stay in the same place, however, if he is to locate what he wants. As I don’t have the ability to memorise the position of things on shelves, the only way I have of keeping books and music in the same order is to use the alphabet. Although Dylan doesn’t read my books he is interested in their covers and has favourites; my Blake books and collected James Wright, for example, are particularly loved (Dylan likes men with beards and there is a splendid photo of Wright on the back cover of Above The River). Dylan organises his books by a system other than the alphabet but he has memorised the position of each one and it is important that I don’t disrupt this by moving them.

books 002This organisation of the environment goes further than books and music however. As far as Dylan is concerned, everything in the house has its place. His view of how things should be is inch-perfect; if I stand up from a chair and push it aside then walk away, Dylan will re-position it exactly as it should be. His systems apply to all sorts of objects: a video case left open on a particular item of furniture overnight; a DVD case placed behind a sofa cushion; a hair brush on a specific shelf; some papers in my writing room which must not be left out on my desk. Dylan’s sorting and tidying is a major part of his autism. Although some of his habits are fixed his organisation of the environment continues to evolve. At the moment, for example, he sorts holiday and steam train leaflets using a system based on whether or not we have visited and how much he would like to (a sort of queue system). His methods are becoming increasingly sophisticated; if I can’t find something I assume that Dylan has found a new place for it.

books 004Parents and carers often make adjustments to the way an environment is organised in order to make it more comfortable for an autistic child or adult. Although Dylan likes being out and about, the community is stressful for him; coming home to an environment which is predictable helps him to relax and feel safe. While initially this required a conscious effort on my part, I have been making adaptations to the home for so many years now it has become second nature to me. In a previous post I noted that we tend to take on the characteristics of people we live with and observed that there’s no reason why this should be any different for those of us who live with people who are neurologically atypical. I would certainly admit to having ‘gone native': I control the environment for my benefit now as much as for Dylan.

*

‘Control’ is one of those concepts that can be used both positively and negatively: children shouldn’t be out of control but being controlling is frowned upon; we don’t want to lose emotional control but stiff upper lips are unhealthy. It is also a subjective concept – how much control people consider too much varies. Control is, however, used as the basis for judgement; complaints about people being ‘controlling’ are frequently made in the workplace and home. Criticism is also often made of environments which are controlled; I find it puzzling that it is considered OK to comment on someone’s house being tidy, but not on one being messy. A boyfriend who teased my alphabetical shelves rankled so much I put him in a bluesy poem:

My lover mocks the way I file a book;
the order against chaos that I keep.

For me, writing a poem is a process of discovery as well as a technical challenge; I don’t think I realised until I wrote those lines that my keeping order was a way of keeping at bay the forces of disorder. But I realised, afterwards, that this is partly what I am doing; a controlled environment is one in which we reduce risk, be it debris from an explosion or rogue measurements from complex variables.

*

Dylan has been assessed at home recently by potential providers of residential care. After one care home manager had completed her assessment we were chatting about transition from child to adult services. She had recently visited a children’s respite provision, she told me, and had been dismayed by how controlling the environment was. The adult provision she was responsible for, she said, supported young people to have control over their own lives. I had no reason to argue with that. But then: ‘I sometimes think’, she said, ‘ that if parents were less controlling fewer adults would end up in residential care’.

I felt as if I were the centre of a controlled explosion. I was speechless. Did she think a residential place a failure then, second best to continuing to live in the parental home? Was she criticising my parenting? Had she clocked my alphabetical bookshelves perhaps? Afterwards I reflected that none of these were likely to be the case: she wouldn’t have shared them with me if they were and, besides, I liked her. I decided that she wasn’t talking about controlled environments so much as controlling relationships. I let myself off the hook: I wouldn’t berate myself for having a tidy house.

Parents of autistic children don’t need any more sticks to beat themselves with; we already have plenty. Alcohol in the first trimester. A poor diet. High stress levels. A prolonged labour. That vaccine shot. I didn’t plan to add ‘controlling mother’ to the list. And besides – isn’t that just another version of ‘refrigerator mother’?

*

Berger and Conrad youtubeThe film Ordinary People (which I’ve referred to elsewhere) is a study of the impact of loss on a family. Buck, a much-loved oldest son, dies in a boating accident which his younger brother, Conrad, survives. The movie opens in the aftermath of a failed suicide attempt by Conrad who is struggling with survivor guilt and Post Traumatic Shock Disorder. Conrad agrees to see a therapist, Dr Berger, but at an initial meeting is reluctant to engage.

Why are you here then? What do you want from me?

I don’t know. I guess I’d like to be more in control.

Why do you want to be more in control?

I don’t know. So that people can quit worrying about me.

Well let me tell you something: I’m not big on control.

ordinary dinner   youtubeWhen Conrad balks at Berger’s suggestion that he will need to attend for therapy twice a week Berger shrugs: Well control’s a tough nut to crack. Control, it turns out, is a key theme of the movie; as the focus shifts to the impact of Buck’s death on the wider family, we realise that this is the way Conrad’s mother, Beth, copes with her grief. Beth manages the environment and those around her obsessively: she lines up cutlery, makes lists and runs a perfectly-ordered house. She controls schedules, organises family trips and manages the behaviour of Conrad and her husband, Calvin. On the morning of Buck’s funeral, it transpires, Beth had asked Calvin to change his shoes and shirt. Conrad tells Berger that his mother had never forgiven him for getting blood all over the new bathroom tiles when he tried to kill himself. Berger knows that what Conrad actually needs is not to feel more in control but to feel; Berger helps Conrad but Beth’s refusal to let go ultimately causes her to lose everything.

I’ve watched the film dozens of time but never fail to be moved by the mother’s situation; grieving deeply for her dead son, the only way she can cope with life is to erect defences against further loss. Haven’t I had enough surprises? she yells at Calvin when he tries to persuade her to see Dr Berger for family therapy; her response to grief is to want life to be a settled, private place. Beth’s determination that nothing should ever again disturb her world means she appears cold and detached emotionally: if she is not incapable of loving Conrad and Calvin, then she is unable to show it. In a previous post I have reflected that this is an understandable response to trauma; while keeping an ordered and controlled environment is helpful for Dylan, there is probably a sense in which it helps me too.

*

whatculture.com conrad and bethAlthough Conrad tells Berger that his mother hates him, his father sheds a different light on the relationship between mother and son; the problem, Calvin suggests to Berger, is that Conrad and his mother are alike. I have been thinking, recently, about the ways in which people are similar, not different. Spectrum, a manuscript of poems I’m working on currently, considers autism as an integral part of a family. Instead of focusing on the things which mark Dylan out as different, the poems in the manuscript find connections between his autistic world and the neurotypical world around him. Rather than dwelling on paradox, these poems look for pattern. In the title poem, I reflect on possible links between three generations of family; here I show my father and I attempting to impose some control on our respective environments, as Dylan does on his.

Spectrum

He calls me on Sunday morning at 8.
There are 72 out, he says: 3 more
to come by the end of the day.
Dad has been counting daffodils.
I picture him in the garden
stooping over them, moving stems
between his hands in groups of 6.
My son is getting anxious;
he is clutching his second DVD of the day,
needing help. This call should only take
5 minutes, I tell myself, if I just say Yes.
My guess is perfect for once. I correct
the angle of a vase on the table
as I pass: fast rewind, select play, press.

Mathematics is something which I think of as linking myself and Dylan as it is associated both with autism and poetry. The film Ordinary People shows us that control can be functional in helping us to overcome trauma and deal with situations we find threatening; I use numbers in my poem to express this positive side of exercising control. The film also, however, illustrates the dangers inherent in such control and I try to hint at these in the poem. It may be that Dylan’s current behaviour (which you can read about here, here and here) is related to control; perhaps he is testing out boundaries or struggling to manage new feelings. If emotional control can be both enabling and disabling, then my task is perhaps to provide Dylan with the freedom to explore his emotions in a place which, while not risk-free, is stable and safe.

Endnote:

I’m still wondering what happened to my copy of Louis MacNeice’s Collected Poems but my money’s on the boyfriend who mocked my alphabetical shelves :-)

*

References:

  • Elizabeth Barrett (2013) ‘Spectrum’ in Turbulence, No. 13
  • Elizabeth Barrett (2005) ‘How It Happens’ in The Bat Detector. Wrecking Ball Press
  • Robert Redford (1988) Ordinary People [VHS]

Images:

All photographs by Liz except for the cover image of Louis MacNeice’s Autumn Journal (Faber and Faber) and the movie stills:

  • Dr Berger (Judd Hirsch) and Conrad (Timothy Hutton) is from Youtube.
  • Conrad, Calvin (Donald Sutherland) and Beth (Mary Tyler Moore) having dinner is from Youtube.
  • Conrad and Beth in the garden is from whatculture.com

Here’s a trailer for the movie:

 

 

 

This One Or That One? Echolalia and Choice

How many crumpets do you want Dylan? One or two?

Two

Dylan how many crumpets do you want. Two or one?

One

happy sad 010Dylan doesn’t have much language and the speech he does use is mostly echolalic. It is thought that echolalia may have a functional role in speech development. For years Dylan repeated the last bit of my daily greeting ‘Good morning Dylan how are you?’ until the other day when, out of the blue, instead of ‘how you’ he said ‘OK’. Perhaps the thousands of echoed replies were a rehearsal for the morning Dylan would have the confidence and understanding to answer. For many autistic people open-ended questions are problematic; without a model or frame, forming an appropriate response can provoke anxiety. Close-ended questions help but even structured choice can pose difficulties for children and adults whose speech is echolalic.

Dylan which hoodie do you want to wear, this one [pointing to black] or that one [pointing to grey]?

‘at one

Dylan do you want to wear this one [now pointing to grey] or that one [now pointing at black]?

‘at one

Because I know that Dylan tends to identify the last thing he is offered I test the reliability of his choices. It is, of course, possible that Dylan genuinely prefers the last item; in this situation there is a happy coincidence between his echolalia and desire. At other times, however, what Dylan says is not necessarily what he means. You don’t need to be autistic of course to select the last option presented; I once had a boss who appeared to only ever adopt the position put last in meetings. Those of us who had spotted this weakness would try to secure the final appointment in her diary before she was due to take a decision we wanted to influence. In another job, working for a research organisation, a manager disliked a questionnaire item I had designed asking survey respondents to select three items from a longer list. They would, she said, simply choose the first or last options; could I please re-design it so respondents had to consider all options before deciding.

A voice

Recently I’ve been asking myself how I can involve Dylan in decisions about his future in a way that allows him to express considered rather than echolalic choices. Although his communication and capacity are limited it is important to me to try and give Dylan a voice. This can, however, be tricky. During Dylan’s transition from school, for example, I involved Dylan in a planning meeting. Dylan’s teacher had designed an activity which asked him to express likes and dislikes by sorting rebus symbols onto ‘happy’ and ‘sad’ pages; the aim was that I would take account of these when writing Dylan’s support plan.

support planning 001The intention may have been good but it wasn’t particularly successful. Although Dylan joined us only for the end of the meeting it was still disruptive, taking him away from his usual schedule. As far as Dylan was concerned, I ought not to have even been in the school. The meeting was in a formal and unfamiliar room and although Dylan knew most of the people around the table it was stressful for him. I had brought juice and biscuits to make the situation more relaxed but this probably didn’t help as he focused on those rather than the activity. As Dylan half-heartedly sorted out the rebus symbols I realised that he probably didn’t know what he was doing there or why.

Later, when I put together Dylan’s support plan, I included the symbols but noted that they ‘contained some surprising choices’. I knew that it wasn’t the case that Dylan didn’t like DVDs for example. I was also fairly confident that he liked books and (with some provisos) music. I had involved Dylan in the process but perhaps not in a way which allowed him to participate meaningfully. If I were to offer Dylan choice again, I told myself, I needed to figure out how to give Dylan his voice, rather than a voice.

A choice

The transition from school was pretty awful for Dylan. Wrangles over funding and provision (which you can read about here) meant I was unable to prepare Dylan for what would happen next much less involve him in the process: with all the uncertainty I had no choices to offer him. Dylan struggles with change and feels loss deeply;  the impact on him of this badly-managed transition has been profound (I have reflected more on this here). Eighteen months later, changes in Dylan’s behaviour and support needs mean he is now being assessed for residential care.

It is impossible to know whether Dylan would still be the happy and stable young man he was at the end of his school years had he been provided with an appropriate placement on leaving education. What is certain, however, is that Dylan’s transition from school included none of the things which help him and many of the things which cause him distress. Leaving home will be the most significant transition Dylan has faced yet and I know he will need much better support this time. Explaining the process to Dylan will be crucial but it is also important that I find a meaningful way of offering Dylan choices about his future. If I am to do more than pay lip service to this I need to think hard about how Dylan can be involved in decisions.

Dinosaurs and Trampolines

happy sad 001Enabling Dylan to find his voice in the process will be complex. I’m not sure I’ve managed to find my own voice yet actually; I am still flailing around, trying different positions and hoping to arrive at one that feels comfortable. If this is such a difficult decision for me, how much harder will it be for Dylan, whose life it is?  In a previous post I described how, while making visits to settings prior to Dylan leaving school, I realised I’d been choosing for myself rather than for Dylan. Since then I’ve tried to remember that the things I prioritise will not be the same as Dylan. It is probably also the case that the things I find hard about the process are not the same as the things about it which Dylan will find difficult.

I realised recently that something which probably isn’t helpful is involving Dylan in visits to multiple settings; more than two places seems to overwhelm him and provoke an echolalic choice. Making an initial selection before offering a choice is therefore sensible and also rules out the possibility of Dylan selecting a setting which is unsuitable or unavailable. This week therefore I whittled potential providers down to two. I decided to get a sense of Dylan’s response to both settings (one of which he had visited previously) and to record this process. Because of the possibility of Dylan making an echolalic choice what I didn’t want to do was show him photos and ask whether he likes ‘this one or that one'; observations of Dylan while visiting the settings, I decided, would be of more value than him choosing between pictures following a visit.

To help with this I asked someone who knows Dylan to join us on visits to the two providers; not having to supervise and manage the visit alone would allow a closer focus on Dylan. I wasn’t surprised when Dylan homed in on things which weren’t on my list of priorities; he was delighted to discover that the setting he hadn’t visited before had a trampoline in the garden and he remembered, with delight, that the setting we were re-visiting had a Disney mural and Dinosaur DVD. Whatever the choice between the two settings hinged on for me, for Dylan it was dinosaurs and trampolines.

His Choice

happy sad 002Although I’d resolved not to offer Dylan a ‘this one, that one’ choice the prospectuses were side-by-side on my desk that evening. Dylan looked intently at both of them and hovered with his pointy finger before (unprompted) saying decisively: ‘at one. This seemed to be a considered choice – I’d watched his eyes flick between prospectuses before delivering his verdict – but I couldn’t help checking: ‘at one he said again, ‘at one.

I hadn’t presented the settings to Dylan as places he might live (or, to put it another way, as part of leaving home). I think that this is too abstract for Dylan to consider and wouldn’t be helpful. The choice Dylan made was therefore not ‘I would like to live there’ but ‘I like that place’. My idea is that, for Dylan, this is how we must proceed; first expressing an interest in a setting and only later introducing the idea of it as a potential home. This is the mirror-image of the usual decision-making process whereby someone would decide to leave home then look for somewhere to live.

There is a way to go yet but this week’s visits felt helpful. I have started making a book to record the process for Dylan; the idea is to not only involve him in decisions but to evidence this so that Dylan feels some ownership of the choices. This record of Dylan’s journey will, I hope, become part of his preparation for transition. I’ve chosen a physical artefact because Dylan likes books but a video diary would also work well. Whatever the format, recording rites of passage is an ancient practice which, for millennia, has been used by human beings to locate themselves in relation to each other and within a community. I hope that such an approach helps Dylan to make sense of, and a choice about, the next stage of his life.

Time

happy sad 009Something which I need in order to do this is time. During the summer the changes in Dylan’s behaviour were so dramatic that the situation presented as crisis; with challenging episodes daily, the priority was keeping me safe and ensuring Dylan had the level of support he needed. It is difficult to involve a young person when they are distressed and I visited providers in haste so that a quick decision could be made. It is only because Dylan is calmer at the moment that I have been able to delay making a decision while I try to involve him in the process.

My neighbour, who works in the sector, asked me yesterday how Dylan was doing. Oh he’s a bit more settled at the moment, I replied. I told him that on good days I doubted the need for Dylan to leave home. Don’t make that mistake, he advised. The most difficult transitions he had witnessed were those which happened in crisis: You want Dylan to move when he is well so that people get to know him at his best and can see his full potential. For the good of everyone the process should happen when Dylan seemed least in need he said.

I am hoping this period of calm continues long enough for me to hear Dylan’s voice. So much provision seems to be about crisis management that I suspect we don’t often achieve this. During our visits this week, though, I heard a heartening tale. Revisiting the house with the Disney mural I discovered there was actually no longer a vacancy. Apparently the young woman who had been expected to move would be staying after all. Her funding authority, which had planned to place her elsewhere, had offered her a choice; she had expressed a preference to remain where she was and the authority (a different one to ours) had respected her decision. Although I was disappointed that there wasn’t a place for Dylan the story gave me hope that, if I support Dylan to make choices now, one day in the future his view could tip the balance.

 

Peeing In A Pot: a quiet celebration

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

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

Deprivation Of Liberty

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

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

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

Balance

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

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

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

Assumed consent

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

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

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

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

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

Medical evidence

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

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

2014-09-02 09.20.39Later in the week I watched a documentary about London Zoo. Using classic Pavlovian methods the keepers were training some animals to accept basic medical observations. I watched fascinated as a gorilla, in exchange for a favourite food, allowed his keeper to listen to his heart through a stethoscope, check his basic functions and administer a needle. The gorilla was healthy but medical checks had been built into his care routine as a safeguard for the day when he might need them. What staff didn’t want, a keeper explained, was to have to have to use aggressive intervention with a sick animal; they preferred to build a partnership between animal and keeper based on trust (and fruit).

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

Celebrating quietly

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

*

Reference:

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

Images:

All photographs taken by Liz

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

The Emptying Nest: autism and leaving home

Renishaw Hall

Renishaw Hall

The start of the academic year can signal a new phase of life for parents as well as 18 year olds; over the last few years I have watched my fifty-something friends learn to cope as their sons and daughters depart for university. Empty nest syndrome, I claimed, was one thing I would be spared.

Although I try to offer Dylan age-appropriate opportunities, the nature of his disability affects the timing of key milestones. For many years I was determined that Dylan would experience being away from home in the same way his non-autistic peers leave for university. I discovered, however, that it is virtually impossible to access funding for this; residential places tend to be associated with crisis rather than choice. Dylan therefore continued to live at home after he left school and I avoided the challenge of an empty nest.

26 years

Renishaw Hall

Renishaw Hall

As it happened, by the time Dylan left school I was glad he wasn’t going away.  Although Dylan’s chronological age was 19, developmentally he was around five years old (I reflect a little more on the gap between chronological and developmental age here). Very few children are sent away from home at such an age and those who are often report painful memories of their early separation from family. My instinct was that Dylan needed longer at home.

I was aware, however, that I couldn’t look after Dylan forever; we are on reverse physical trajectories and caring for Dylan alone was becoming increasingly difficult. I have always believed that 26 is the age we tip from child to adult, leaving behind the experimental years for something more settled; as Dylan reaching this age would coincide with my retirement it seemed an appropriate year for me to set as a watershed for Dylan leaving home. I knew this could only be aspirational – some autistic adults continue to live with their parents for much longer – but it would give us something to prepare for, practically and emotionally. There wouldn’t, I told myself, be any sudden emptying of the nest.

Sudden absence

Renishaw Hall

Renishaw Hall

It is natural for parents of disabled children to feel protective but I have perhaps been more inclined to this because of my experience with my daughter. While I might not have had to face an empty nest I have had to cope with sudden absence. When my daughter was 14 her father, who lives in Scotland, failed to return her after a routine access visit; for the next year I didn’t have any contact with my daughter or know anything about her life or how she was. The only information I received was through my solicitor’s communication with my ex-husband’s solicitor; the details are a case study in how not to co-parent a child following divorce. That story is not for here; this week, however, I made a link between my expectations about Dylan’s future and my daughter’s departure. To draw this connection I need to reflect a little more on my daughter’s sudden absence.

The prodigal

Wyming Valley

Wyming Brook Valley

My daughter would be 16 before I saw her again (she is almost 19 now, just 18 months younger than Dylan) . By the time her father and I had slugged things out through the courts she was settled in a new school and country. Although I hadn’t wanted her to leave, in time I adjusted to her being elsewhere. Nothing would ever make Dylan or I as happy as having her home but eventually we embraced the gains as well as the losses of living on our own. Dylan and I drew closer and he benefitted from having more of my time, attention and support than he would otherwise have received. When my daughter decided to resume her schooling in England and returned to live with us, we all struggled; she had got used to a different way of life and in the years she had been gone Dylan and I had got used to our own way.

When my daughter decided to return to Scotland for the final year of schooling I thought it wouldn’t feel as bad as before; this time it was my daughter’s decision rather than one that had been made for her and she was a young adult now, not a child. Still, I suffered; the prodigal had returned only to leave again. How could I have been so careless as to lose a daughter twice? One day, hopefully, I will make better sense of it; for the moment I tell myself that life is complicated and decisions often multi-factorial. As Pascal reminds us: la coeur à ses raisons que la raison ne connaît pas.

Written on the body

Renishaw Hall

Renishaw Hall

If the heart can direct us with its reason then so can other parts of the body. The first time my daughter left, my back broke down catastrophically. After the initial shock at my physical collapse I wasn’t surprised; my back had behaved this way before when I was in deep grief. I have heard it said that the spine represents esteem and that back problems arise when our sense of self is under threat; my daughter’s disappearance certainly undermined my identity as a mother.

I was immobile with pain so decided to see an osteopath. The one who was recommended and who I have seen since is a Hakomi practitioner who, as well as working miracles on my body, offers me alternative ways of thinking. Once my back was improved the pain moved into my left jaw; it was so bad I could barely open my mouth. I had extensive medical investigations which revealed nothing. Have you considered that the difficulty with your jaw might be about the blocked communication with your daughter? the osteopath ventured one day. It may be coincidence but after my daughter made contact my jaw healed.

Bolton Abbey

Bolton Abbey

Since then I have tried to read the writing on other parts of my body. When my daughter left the second time my right arm developed a problem; I fancied this was my body telling me I should not depend on her to be around. Last year I developed a left shoulder problem. At first I assumed this was an injury I had picked up in the gym (showing Dylan how to use kit I didn’t know how to use myself) but the osteopath offered an alternative reading: that shoulder might not improve until you can put down your shield. I had been fighting for provision for Dylan for so long I was battle-weary and bowing under the weight of my shield, she suggested.

In the weeks since I heard that Dylan’s funding has been approved the ache in my left shoulder has eased. This week, however, I complained to the osteopath: I’ve had a terrible acid stomach for days. I don’t understand why, I told her, I don’t usually have stomach problems. Perhaps there’s something in your life you’re finding hard to digest right now, she replied.

Empty or emptying?

My daughter in a tree on the  Isle of Skye, 2009

My daughter in a tree on the Isle of Skye, 2009

During the last four years I’ve sometimes felt less than sympathetic towards parents with empty nest syndrome; they have had the satisfaction of supporting their sons and daughters to a planned departure at 18. What was there to mourn? With Dylan still around, and having already coped with my daughter’s absence, I would be spared the dazed emptiness I saw in the faces of friends and colleagues who had waved their children off, I told myself.

My stomach, however, may be telling me something else. Last week my daughter visited to say goodbye before she leaves for university in France. I was surprised by my sense of loss; although we had spent the last four years learning to live apart there was something different about our leave-taking this time. After I dropped her off at the railway station at the end of the visit I sat in the car park and cried; this, I thought to myself, must be the empty nest.

Wedding meadow 015

Harper Lees, Hathersage

Perhaps when my daughter is safely settled in her new life I’ll start to relax. It’s possible, however, that the thing that’s hard to digest is not my daughter leaving but my son. Because while my daughter was visiting, the situation with Dylan was developing. As the funding for residential care has been approved, it has been suggested, now is the time for Dylan to leave home. I know this makes some sense; I am struggling to keep us both safe during ‘incidents’ (though there have been far fewer since the introduction of a low-sugar diet) and can’t offer the level of support Dylan now needs to access the community. But when Dylan is his gentle self it is hard to accept the need for something I had thought wouldn’t happen until 26. My daughter had launched herself from the nest but Dylan would need a push; being left with an empty nest is one thing, emptying it myself quite another.

Community

Shakespeare's Church, Stratford-Upon-Avon

Shakespeare’s Church, Stratford-Upon-Avon

So I have been trying to digest the implications of this and figure out what is best for Dylan. I am well-supported; Dylan’s social worker, health care professionals, and his day and respite service are all in regular contact. The sense of community around us will make a difference to our capacity to manage the decision-making process I’m sure. Dylan and I have visited settings and drawn up a shortlist of providers. We are now at the point where a decision has to be made about whether or not to take one of these forward. I have been prevaricating; on good days I can see no reason why Dylan can’t continue to live at home but on difficult days I am resigned to him leaving, like his sister, suddenly and earlier than planned.

Padley Gorge, Grindleford

Padley Gorge, Grindleford

It is a year since I set up this blog  (my first post was made on 28th August last year) and I have learned so much from my conversations with others in that time. The blog community, I have discovered, can offer practical and emotional support to its members like any community. The other day I was reading the latest post from Juniper Hill Farms, a community setting in the US. The post reflects on communal living and some of the issues that can arise in relation to food choices and responsibility to others. As I was reading the post I was reminded of the benefits of communal living and of the opportunities for learning and development which such settings present. I could, I reflected, consider a residential place an opportunity for Dylan rather than a loss.

Roseberry Topping, Yorkshire

Roseberry Topping, Yorkshire

The Juniper Hill post also reminded me of the importance of finding ways to involve Dylan in decision-making; a paper cited in the post, on the right of people with developmental disabilities, argues:

The crux of the issue is that interdisciplinary teams (educational or residential) should not make
decisions about the client’s future without client input (Bannerman, 1990, p.85)

Dylan at Lea Gardens, Matlock

Dylan at Lea Gardens, Matlock

This is going to be one of the key challenges for me in the days and weeks ahead. What makes the difference to how we feel about change, I think, is choice. When my daughter took control of her life and made her own choices about where to live and study it was easier to accept and support these. Choice may leave a parent crying in a car park but that is easier to stomach than the unease created by decisions made for a child or young person by someone else. The significance of Dylan’s disability makes it more difficult to involve him in decisions about his future but I have some ideas for ways I can try. An empty nest has to be better than emptying the nest and if I can think creatively about Dylan’s voice then, like his sister, he might fly.

*

Reference:

Bannerman, D.J., Sheldon, J.B., Sherman, J.A. and Harchik, A.E. (1990) ‘Balancing The Right To Habilitation With The Right To Personal Liberties: The Rights Of People With Developmental Disabilities To Eat Too Many Doughnuts And Take A Nap’ in Journal of Applied Behavior Analysis, Vol. 23, Number 1, Spring 1990, pp 79-89

Images:

All  photographs by Liz

50 Shades Of Beige

macaroni cheeseIn a previous post I reflected on the reasons why I didn’t pursue dietary intervention with Dylan when he was young; his autistic behaviour, I decided, was probably not exacerbated by food intolerance. I did try to intervene on more general health grounds but when this proved unsuccessful I resigned myself to Dylan’s diet being less than perfect. As a food-aware vegetarian this was an aspect of parenting an autistic child I found hard to accept; I learned to tolerate Dylan’s food choices, however, by trying to understand them.

50 shades of beige

baguettes| crumpets| English muffins| Belgian waffles| Scotch pancakes| brioche| croissants| pop tarts| cornflakes| white wraps| white rolls| milk| butter| white cheddar cheese| edam cheese| Dairylea slices| fromage frais| yoghurt| potatoes| bananas| apples| cheese pasties| macaroni cheese| spaghetti| tortelloni | cheese sauce| cheese pizza| cheesy potato cakes| cheese pancakes| quorn nuggets| chips| veggie fingers| vegetarian kievs| vegetarian schnitzels| vegetarian meat balls| vegetarian sausages| Yorkshire puddings| vegetarian escalopes| Pringles| quavers| mini cheddars| angel cake| fondant fancies| donuts| syrup| ice cream| gingerbread men| millionaires shortbread| cookies| white chocolate|

Food and the senses

food6Again and again, when trying to understand Dylan’s world, I return to the senses. What distinguishes Dylan’s foods is that they are largely colour-free, flavour-free and odourless. I use the term ‘beige’ to describe that neutral range of shades from pale straw through to caramel. Some of the more adventurous foods in Dylan’s list throw in a pastel: the pale yellow of a banana, a light green apple or the pink and lemon of angel cake. Essentially, however, Dylan’s meals are beige.

I photograph Dylan’s meals so that I can offer him food choices and it was through this I noticed the colours tend to be neutral. Fresh pasta would be ruined for Dylan by the addition of sauce: with one exception it must be served plain with a sprinkling of grated cheese. Pizza must be unadorned with no tomato sauce visible through the uncoloured cheese. Main course selections can be accompanied by Dylan’s one vegetable, served one way (I have considered colouring chips orange as deterrent).

food10I’ve used some of the images to illustrate this post; as well as being underwhelmed visually, if this were a multi-sensory blog you wouldn’t be able to smell much either. The least bland food in the list is probably vegetarian kievs; these are a relatively recent addition to Dylan’s diet which gives me hope that he may accept a wider range of tastes and smells eventually. The kievs are a familiar brand, made of quorn and beige in colour; these factors probably encouraged Dylan to try them. Gingerbread men are spicy too but Dylan makes an exception for them, I think, because he associates these with his Gran.

I am happy to support the aspects of Dylan’s diet which are linked to his sensory needs; I wouldn’t want to serve him foods which cause distress because of the way they smell, taste, look or feel. While this means Dylan’s diet is bland and repetitive, if he enjoys it and is basically healthy I don’t object. Dylan has developed strategies for selecting foods which meet his requirements for low sensory arousal; there is a kosher range at one supermarket, for example, which he trusts. When Linda McCartney changed the sausage seasoning, however, Dylan avoided other products in the range (which had previously been his favourite). As food producers try to excite and delight our taste buds, Dylan withdraws his custom.

Brid and Food 065Although Dylan wouldn’t dream of eating highly-spiced or smelly food he is fascinated by it. One of his few clear words is ‘marmite'; he frequently fetches the marmite pot from the kitchen and walks around with it, pretending to smell then saying ‘phewee’ while waving his hand across his nose. If I offer him a jar or bottle to sniff he will gingerly approach it, simultaneously intrigued and repelled. But eat or drink it he will not – and his taste buds are so finally tuned he can detect rogue substances instantly.

Some surprises

food4There have been some surprises. Pesto for example. True he picks out every single pine kernel, but the colour, smell and taste are for some reason perfectly acceptable to Dylan. Building on this I have introduced mozzarella and pesto escalopes (in a quorn range Dylan likes) and have recently tried him with spinach and ricotta tortelloni. I figured Dylan might mistake the green stuffing for pesto; he is suspicious I think, but has eaten it a couple of times. It makes me happy to offer Dylan pesto or spinach and ricotta pasta because it feels healthier than some of his other choices; I also like to give Dylan veggie fingers because that way I sneak tiny pieces of carrot and pea past him (the only time his vegetable-detecting radar seems not to work).

Brid and Food 071Dylan’s list of 50 foods is notable for its tally of only one vegetable. Although I fed Dylan a wide range of pureed fruits and vegetables as a baby he has not eaten a vegetable since (except for potatoes and the fragments of pea and carrot in veggie fingers). I assume his aversion to them is partly about colour. Dylan will, however, tolerate some bright fruits: strawberries, cherries, plums and grapes are now acceptable. I have wondered whether Dylan’s liking for these is linked to his love of sweets: they have acquired the status of Honorary Haribos, perhaps. Because I should note that, in addition to the 50 beige foods, Dylan eats brightly coloured jelly-type and candy sweets if I let him.

Sugar and spice

needsweets.co.ukAs I have noted in an earlier post I am careful about Dylan’s intake of sweets; although they can be an effective reward as part of a behaviour training programme I am uncomfortable with their use. Given Dylan’s restricted diet I have felt a particular need to limit Dylan’s sugar intake; while I might not insist he eats the foods he has an aversion to, I can at least restrict unhealthy items he is unhealthily predisposed to. This was easier when Dylan was younger and I had more responsibility for his diet and food choices than I do now he is an adult. In the last couple of weeks this has become a potentially significant issue.

food5If you follow our blog you will know that Dylan has developed behaviours recently that have been causing concern. I have been keeping charts logging incidents but have struggled to find a pattern to the behaviours; in the absence of obvious environmental explanations, Dylan has been referred for neurological assessments.

Brid and Food 078I should perhaps be more explicit about the behaviours. They usually emerge suddenly in that immediately beforehand Dylan appears happily engaged in an activity. Incidents have happened at home, respite, day centre, indoors and outdoors, and with the full range of people who support Dylan. Dylan will typically begin with trance-like behaviour; his eyes will glaze over and often he will stare transfixed at his own hands, wiggling his fingers. By this point Dylan is unreachable, unresponsive to attempts to communicate and refusing touch. The trance phase is usually followed by wild jumping.

Brid and Food 077Dylan has always jumped, something I have considered a communicative act (I have written a little about my attempts to make sense of Dylan’s jumping here). Recently, however, Dylan’s jumping has changed; he throws himself around violently and wildly with immense force, putting himself at risk as well as others. Dylan is extremely distressed during these times; it is not jumping that is bringing him pleasure or relief. Jumping is now a transitional phase to a more challenging stage in which Dylan attacks his carer, usually by tearing at their ears. Resolution can come quickly or take several hours and afterwards Dylan seems to have little or no memory of events.

food3I must stress, for those who don’t know him personally, how unlike Dylan this behaviour is; it has been a shock to everyone involved with his care as Dylan has always been considered a gentle young man. At one school review I was told that his behaviour chart was quite unusual; the only incidents recorded that year were letting off the fire extinguisher twice and some cup-smashing incidents. Against this profile, the last few months have been hard to fathom; the change has been so sudden and extreme I have been more or less convinced that the only possible explanation was neurological.

And then, a couple of weeks ago, a woman who hadn’t met Dylan before came to assess him. I shared Dylan’s charts; she was interested and emailed later to say she had been racking her brain for possible answers. I might want to look more closely at food, she said – had I noticed that events often took place around meal times. Could Dylan be suffering from reflux? Feeling sick? Could he be diabetic perhaps? Had I considered spicy food? Or sugar perhaps?

The Milkybars are not on me

milky bar wikipediaBecause the changes in Dylan’s behaviour had been so dramatic I had been looking for something in his life that had changed; now I was faced with the possibility that the behaviours were linked to something that had remained the same. That night I stayed up researching food intolerance and aggressive behaviour; a suggestion that cropped up again and again was sugar and, more specifically, white chocolate. White chocolate is Dylan’s favourite treat. He always picks a white chocolate egg at Easter. When we shop he chooses a milky bar. He selects white chocolate chip for the cookie tin. People who know Dylan give him white chocolate for a present. This had always seemed fairly innocuous to me.

The milky bar kid is strong and tough, and only the best is good enough
the creamiest milk, the whitest bar, the good taste that’s in MILKYBAR!

Brid and Food 072When I looked back through Dylan’s behaviour chart I found details which lent support to the sugar hypothesis: the day Dylan had a major incident coming down the valley he had bought an ice cream on the way up; a terrible attack one Sunday evening happened 40 minutes after Dylan had eaten a half bag of white buttons. I decided this was worth pursuing and moved Dylan on to a low sugar diet: no chocolate, biscuits, cakes, ice cream or soft drinks.

Dylan didn’t eat a lot of these previously; he was allowed one item for pudding after his evening meal and soft drinks two or three times a week. I know that Dylan consumed more sugary products than he was used to when he first started at his day centre but this was quickly picked up and dealt with; from his day centre records Dylan was not consuming excessive sugar there either. My understanding, however, is that if an intolerance develops even the smallest amount can trigger a response.

Brid and Food 074Dylan is now on two charts: one recording behaviours and one recording what he eats and drinks. Since starting the new regime there have been just two incidents (on days three and 10) compared to the previous pattern of almost daily incidents. For some of the time Dylan and I were away from home, something which will have made the change in diet both more and less difficult for Dylan. On the plus side the change of routine may have helped him to accept an altered diet; less helpfully, seaside resorts are full of sugar-eating opportunities. Dylan accepted the new food rules, however, and on the fifth incident-free day I was all but convinced I had cracked the sugar code. Although a later incident reminded me of the need for caution I am sufficiently persuaded by the link to have revised my view of autism and food intolerance.

foodxDuring this time I too have been sugar-free; how could I eat an ice cream while saying ‘No’ to Dylan? At the moment I’m reading Caroline Knapp’s Drinking: A Love Story, a memoir about getting sober. The book has encouraged me to reassess my own decision to give up drinking six years ago (which you can read about here). I have also found myself thinking about addiction more generally; giving up sugar, I realise, could be as hard for Dylan as giving up drinking was for me. I’ve tried to help Dylan through the difficult early days by drawing on my own experience; I know the situation is different in that a decision has been made for rather than by Dylan but I have his long term interests at heart and hopefully some understanding of his short term struggle. Whatever the outcome, the shade of beige looks considerably less innocuous to me now.

*

Reference:
Caroline Knapp (1996) Drinking:  a love story. Dial Press

Images:
All photographs taken by Liz except for the milky bar image which is via wikipedia and the strawberry haribo image which is via needsweets.co.uk

 

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 setting and I was anxious about the situation; 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. Setting up a blog was part of my advocacy; it was a way of sharing information with other parents. 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 001Caring 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, for example, purchases care services with his personal budget; this 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 003So 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 004There 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 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. I was faced with the choice of keeping respite provision and not being able to continue to work full time (so losing the family home) or prioritising working full time in the almost-certain knowledge that I would get into crisis without respite care (I’ve reflected on the impact of this period on me here).

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 006Social 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 007I 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 008I 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 009Discovering 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 010I 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

DSCF3966Last 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.