Things To Celebrate

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

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

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

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

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

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

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

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

 

Transition To Care: the phoney time

It is nearly week seven of Dylan’s residential placement but it still feels as unreal as the ‘Phoney War’ my dad used to refer to when things you expected to happen didn’t materialise. It’s not that Dylan isn’t based at his new home: he is. But transition thus far has been so quiet that neither Dylan nor I really believe it. I’m not sure whether this is a good or a bad thing. Some days I tell myself it is going so well because of this phoney time. Other days I hold my breath; the reality will sink in one day soon and then I’ll wonder if I should have faced up to it before.

A bit of everything

phoney 002What I am calling phoney time arose through fortune as much as planning. The first stroke of luck was that after Dylan’s residential placement had been approved his day centre requested a month’s notice. Had this not been the case Dylan’s social care-funded day centre placement would have ended one day and his health care-funded residential placement started the next. Clearly this would not have been great from Dylan’s perspective (or from anyone’s except the funders) but this is standard practice and difficult to challenge. The 28 day notice period, however, provided a fortunate opportunity for a programme of interim activities involving home and both providers.

For the first three weeks of Dylan’s residential placement therefore he was based sometimes at his day centre, sometimes at his new home and sometimes with me. On the days Dylan was at his day centre he was observed by staff from his new home and on days when he was at his new home, members of staff from Dylan’s day centre provided guidance and support. This gave Dylan an opportunity to get to know care workers from his new setting as well as enabling the exchange of information, practice and expertise across staff groups.

This process was not without its challenges. The two settings had different values and practices which were evident in some of their approaches to supporting Dylan. By the end of the third week staff from the new home were keen to employ their own systems and establish consistency in Dylan’s care. Observing staff and managers trying to accommodate practices from another setting helped me to understand how confusing transition could feel for the autistic person at the heart of the process. The exchange of staff across settings gave those involved a glimpse of this through Dylan’s eyes.

So for the first three weeks of his placement Dylan got a bit of everything: his favourite activities (swimming, skating and library) continued with his day centre; other familiar activities (his exercise routine for example) were established in the new setting; and some new experiences (such as helping in a community shop) were introduced. During these shared weeks Dylan didn’t have to say goodbye to anything; he continued to see his familiar day centre staff and he saw plenty of me as well. This was partly because of the amount of ferrying between places I had to do during this time; Dylan and I spent hours together on the road, working our way through favourite CDs. Although the nights Dylan spent at his new home increased each week, he never stayed longer than his longest respite. So as far as I was concerned Dylan hadn’t yet left home; we were in a phoney zone.

Lots of mooey

Reighton 2015 125Dylan and I had a holiday booked for the fourth week of Dylan’s residential placement. This was not something I had expected earlier in the year; Dylan’s increasingly ‘challenging behaviour’ meant I had resigned myself to not being able to take him away this summer. Dylan loves his holidays so accepting that I could no longer support him by myself had been hard. But isn’t it just the way of things that the minute I made this decision my friend Julie asked whether we would like to rent a holiday cottage with her and daughter Ella 🙂

There was a chance that supporting Dylan and Ella would be too much for us if they became distressed by each other or at the same time – and if Dylan became very upset I would need to protect Ella and Julie as well as myself. Julie would be able to offer support to me, however, and her presence might have a positive effect on Dylan. We would, we decided, try it; if it proved too difficult I would head home.

Happily, we had a good week. Dylan seemed to enjoy having other people around and we did lots of fun things. There was a focus on transport (steam trains, land trains, miniature trains, pedalos, boats, buses and chair lifts) but we also spent time on the beach, visited churches and a stately home, and ate at the Magpie Café. And Dylan, of course, got to spend a whole week with his ‘mooey’; that he had already left home could not have been further from our thoughts.

Phoney signs

phoney 005Before we left for our week by the sea it was agreed that when we returned Dylan would be based full time at his new home. Although we were still within the 28 day notice period it was also decided that joint staffing would end and the new setting assume responsibility for Dylan’s care. In this way our holiday would signal the end of the first phase of transition.

As I am on leave during August however, and able to spend time with Dylan, I am still around too much for him to miss me or think anything amiss; Dylan still hasn’t been away from home for more than three nights at a time.  As well as allowing me to spend time with Dylan, the timing of his transition has been useful in other ways. One thing that has taken me by surprise is the effort parents need to put into the process. In addition to the ferrying between places there are meetings to attend, paperwork to complete, care plans and transition documents to develop, emails to write, phone calls to make, admin to sort out (mostly relating to change of address and adjustment to benefit entitlements) and the not insignificant time (and money) on, of all things, shopping.

I had originally assumed that Dylan would take his belongings from home to his residential setting but was advised this would not be a good idea: remember how it felt when you left home, one of the care home managers observed, and how important it was to you that your childhood room was still there? So I’ve been buying duplicates instead. I’ve tried to introduce some differences but have played safe and reproduced key items like Dylan’s CD player, TV set and his toiletries and personal items. I arranged for some things to be delivered (like Secret Santa) while we were away and am introducing others gradually; a ‘big bang’ approach would be too overwhelming I decided (not least financially).

Some days I feel exhausted by the process. I suppose it’s not dissimilar to the way the bereaved are kept busy in the aftermath of a death and grieving must wait – or, to be less melancholic, the effort expended by parents helping a child to leave for university. But because of Dylan’s disability, and particularly because he doesn’t use speech to communicate, the time taken to record his care and other needs is enormous. I could not have undertaken this at any other time of year; had transition happened while I had work commitments I would simply not have coped. The second stroke of luck, then, was that the timing of Dylan’s transition could not have been more perfect.

Yesterday, while I was in the city, I called into my office to pick up some marking. That’s a sign that the summer is over, I told the friend I was with; this phoney transition will have to end then too. But, she observed, from what I had said things were going well for Dylan? Well yes – except I’m not sure he realises yet that he’s left home. Dylan still keeps his day centre diary in its ‘overnight’ spot (not even the place he kept it at weekends and holidays) and, even more worryingly, he refuses to leave any of his possessions at his new home. When I pick Dylan up he has packed everything and is ready and waiting to load up the boot of my car. Oh dear, my friend said: that’s not good.

Positive signs

phoney 003I’m quite sure this isn’t because Dylan is unhappy in his new home. On the contrary he appears to be having a fine time. Dylan’s programme has been full and varied with the familiar activities he loves as well as new challenges and experiences. He is always happy to return after he has spent time with me and he seems to be settling into his room and to the routines of the home. As well as getting used to new support workers, Dylan is responding well to a communication system which promises to make a positive contribution to his life. Apart from a minor incident on our return from holiday, he has been calm and happy.

The fact Dylan transports everything to and fro suggests, however, that he doesn’t yet realise this is his home now rather than his respite setting. Dylan has always been careful with possessions, taking responsibility for his belongings and managing them independently, so it is quite understandable that he would continue to bring these home with him. He only tries to bring home things he has seen me take or has taken there himself (not the things from Secret Santa). Perhaps, as far as Dylan is concerned, someone else uses the room he sleeps in on the nights he isn’t there (as happens with a respite bed)? And why should he respond to my suggestion: why don’t you leave these here Dylan? I have, after all, spent years telling him not to leave things behind. The fact I have duplicated his belongings doesn’t stop Dylan from bringing them home either; as he collects multiple copies of books and CDs, having duplicate hair brushes, toiletries and CD players is a bonus.

phoney 006Although a visual timetable helps Dylan make sense of his life in concrete terms (where he will be and what he will be doing) it cannot communicate more abstract concepts. ‘Home’ is a complex idea. It is more than the house where you spend your time; it is the place where you feel safe and loved. The circle around the house in the symbol system which Dylan uses is an attempt to communicate the emotional freight of a building, i.e. that this particular house is the one where you belong. This is not something that can easily be explained however; it is through lived experience that Dylan will come to understand this in his heart.

Some of what Dylan is experiencing is not specific to autism or learning disability; anyone moving house or leaving home for the first time would take a while to feel at home or become accustomed to living independently from parents. If the key difference in relation to Dylan is that it is harder to explain the process, maybe the challenge is to help him understand it emotionally rather than cognitively. It is perhaps for this reason that I haven’t written a social story about ‘leaving home’ for Dylan. The ones he has been offered so far focus on more immediate and concrete events. This week, for example, I was unable to use my car so had to collect Dylan by train. This provided a useful opportunity to encourage Dylan not to pack all of his belongings for the visit. Staff at Dylan’s residential setting wrote a social story explaining that he wouldn’t be able to carry everything on the train so should take just an overnight bag with him. This seemed to help and for the first time Dylan left things in his room.

It may be that these early weeks have been about allowing Dylan to absorb the experience of transition rather than trying to explain to him what is happening. There could, I realise, be challenging times ahead, especially as Dylan can have a delayed reaction to change. Maybe my ‘Phoney Time’ is another person’s ‘Honeymoon Period’?  In which case I should probably ask myself why I chose a military rather than a romantic metaphor. But whatever I call these early weeks, they have been helpful in alleviating rather than creating anxiety. And while I know the move to a specialised setting cannot magically eradicate the behaviours which triggered the placement, the early signs are positive.

Real time

phoney 004There is still one more piece I want to write before the end of phoney August. After that I will consider Dylan and I to have crossed the line and I will start a daily diary. Those posts will be different to the ones I have been writing in the last two years and will focus less on Dylan and more on the experience of separation from a parent’s perspective.

There are things I could say already: that it was almost harder to leave Dylan the night he was charming and chatty and held on to my hand, smiling and laughing, when I dropped him off. That there are nights I have walked my house crying, heaving with grief. That I have loved walking the hour it takes into the city instead of driving. That I have swum first thing in the morning. That I spent a day with a girlfriend without looking at my watch (except to make sure we didn’t miss the film). That I said ‘are you alright for time?’ to someone instead of being asked it. That it was with shock I realised that I could read during the day instead of only last thing at night. That I sleep through the evenings as if making up for years of exhaustion.

All this and it hasn’t yet begun…

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Images:

The photo of Dylan, Ella and Julie was taken in Whitby; I bought the wooden letters for the door of Dylan’s new room the other day, hoping they might help identify it as his space (he has some on his door at home); the ‘home’ symbol is from makaton but is commonly used across communication systems.

And Finally

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Last Lap And The Car Wash

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

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

Replay

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

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

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

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

U-turns, false starts and golden gates

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

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

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

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

The road

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

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

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

Gardens, mud and dirt

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

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

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

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

The car wash

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

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

Postscript

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

Images:

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

Staying Alive: autism and risk

risky flight 003In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

risky flight 009Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult’; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

risky flight 005These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

risky flight 008So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.


Images:

The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.

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.

*
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.

*
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.

*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

HAPPY BIRTHDAY TO DYLAN:  21 YEARS OLD TODAY!

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

References

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

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

Autism And Friendship: learning from Dylan

I’ve had cause to reflect on friendship recently, partly triggered by Dylan’s social life and partly by an event in the workplace which left me with some questions. In this post I apply my reflections on Dylan’s relationships to the neurotypical world and suggest ways in which we might re-think ‘friendship’.

Ruby*

Dylan July 13 003Last week I took Dylan to the 21st birthday of a young woman he has known since primary school. Dylan and Ruby have grown into beautiful young adults, I thought to myself as I watched them at the party. Ruby had opted for a disco buffet for her celebration. It was a perfect choice; there is nothing like food and dancing to bring together men and women, old and young, family and friends and the autistic and neurotypical.

Dylan’s dancing style is centrifugal; he and I spun each other around, jumping and hopping in ever-increasing circles. I don’t know what Ruby made of Dylan’s dancing but I figured it might be pretty similar to the way I looked at men at discos when I was her age. She can’t have thought it too awful though as she let her mum dance with Dylan for a while.

As well as dancing Dylan took the opportunity to be wine waiter. He held tightly to a bottle of wine, pouring large glasses and doing ‘chink chink cheers’ with whoever was willing. He also enjoyed the buffet. When my back was turned Dylan removed and ate all the sausages from the sausage rolls, leaving the pastry cases in perfect curls on the plate. I suspect he ate all of the chicken nugget supply. For Dylan, this was the ideal party: there aren’t many places you can steal sausages, play with wine and dance like a dervish.

Dylan and Ruby haven’t always been comfortable sharing their space. Over the years there have been a number of altercations and they have sometimes needed separating. If I got a phone call from school to say Dylan had been involved in an incident I would automatically ask ‘and is Ruby alright?’. They could still annoy each other I’m sure – indeed we had to abort a walk which set off on the wrong foot recently – but, happily, having Dylan at the party was a success.

Stepping stones and splash holes

party time 005Dylan doesn’t get to go to many parties. When he was young I organised birthday celebrations at autism-friendly venues such as soft play centres. In time, however, I realised these were not enjoyable experiences for Dylan. Birthday parties are stressful; as well as the challenge of the environment and disruption to routine, guests are noisy, unpredictable and annoying. Dylan much preferred to celebrate his birthday with a family meal at a quiet pub.

Dylan, like many young people with autism, likes to spend time alone. If I arranged for other children to come to the house he would spend the whole visit in a state of anxiety. Other autistic children would go through his DVD collection and toys, interfering with his careful ordering and disrupting his environment. They would want to watch a film which wasn’t on his schedule for the day. Even if they chose the right film, Dylan doesn’t like watching with other people in the room. While generally tolerant of the children he was alongside at school, he didn’t want them in his space at home.

Once I’d realised this I stopped organising such ‘opportunities’. Why impose my ideas of what is appropriate on Dylan? He didn’t want to do play dates. As Dylan entered his adolescent years I discovered that he could tolerate contact with peers for selected activities. A walk in a local valley in the company of a young man Dylan had been at school with was fine, for example; although they didn’t walk together they walked in a similar manner to the same route and destination. Similarly Dylan was quite happy with an occasional picnic trip with Ruby to a bend in the river where they could play separately on the stepping stones (Dylan) and in the splash holes (Ruby).

Ella

Easter 2014 034It’s hard, as the parent of an autistic child, to know how best to support peer group ‘friendships’. While I didn’t want to put Dylan in situations he found stressful, neither did I wish to write off the potential benefits of peer group contact. As well as respecting Dylan’s preference for spending time alone, however, there were other factors which prevented me from setting up more play dates.

Organising social events for autistic children is tricky when your child attends a special school. Although you become familiar with the other children on the bus your child travels on, you may never meet their parents. Furthermore, there are few occasions when you get to visit your child’s school at the same time as other families. In this situation it isn’t easy to make connections with the parents of your child’s peer group. It was a happy chance, then, when it turned out that a new friend through my poetry networks had an autistic daughter the same age as Dylan.

I have written a little about Dylan’s trips out with Ella here, here and here. Although Dylan pays only scant attention to Ella, his relationship with her marks a development in Dylan’s understanding of peer group relationships. He has learned, for example, that he can meet people outside the context of school who have similar interests to him. I’ll never forget Dylan’s astonishment when, visiting Ella at home one day, he discovered that her VHS and DVD collection was almost a complete copy of his own. I also learned, as he pulled all Ella’s films off her shelves and spread them around her bedroom floor (Ella looking on in increasing agitation) that Dylan can be just as annoying to his autistic peers as they are to him.

Christopher*

party time 004Dylan’s relationships with Ruby and Ella are fairly typical of his peer group friendships. I don’t think the fact they are with the opposite sex is especially significant although as Dylan grew up in a predominantly female household I suppose he may feel more comfortable with girls. For a while when he was younger, however, Dylan had a quite exceptional friendship with a boy called Christopher.

For a long time I didn’t know about Christopher. One day however, dropping Dylan off at his primary school following an appointment, I was surprised to see him approach another child and give him an excited squeeze. Anxious about the physical contact I made to intervene but Dylan’s class teacher stopped me: ‘It’s alright – that’s Dylan’s little friend ‘ she said. ‘They’re pleased to see each other. ‘Friend? Dylan? I had never seen Dylan pay attention to anyone his own age except for his sister and step-sister.

Dylan treats siblings as honorary adults. At a young age Dylan discovered that people his own size at home could help him to the things he wanted in the same way parents could; they could rewind videos, reach a packet of crisps, fasten shoelaces and play clapping games. ‘Sister’ and ‘Mog’ were therefore acceptable to Dylan. Apart from this, other children (especially if they were smaller) were to be avoided. Until Christopher.

I didn’t have many opportunities to see Dylan and Christopher together. Once however, while shopping at a supermarket the other side of town, Dylan suddenly ran off. When I caught up with Dylan he was at the other side of the checkout counter, holding Christopher’s hand and making greeting noises. I loved that Dylan had spotted his friend and gone to say hello. Later, when we moved to that part of the city, Dylan and Christopher travelled to and from school on the same minibus. I didn’t get to see them together as Dylan was collected before and dropped off after Christopher, but the escort often told me about their special friendship.

Perhaps in time the friendship between Dylan and Christopher would have moved to out of school contact. One day, however, there was an incident on the bus; Christopher and Dylan got upset and in the kerfuffle Dylan was hit by a flailing arm. This had a significant effect on Dylan who became wary, preferring to sit alone on the bus and no longer interacting freely with Christopher. No matter how much I tried to explain that what had happened was an ‘accident’ Dylan could not be reassured. Although it pained me to watch Dylan lose confidence I told myself that the fact he had experienced such feelings meant that, however severe his disability, he was capable of friendship.

Beyond School

Dylan July 13 002Although Dylan has grown into more comfortable relationships with his peer group there has never been another Christopher. When I let myself dream about Dylan’s future, however, I imagine a house with two or three young men, one of whom looks uncannily like him. I suspect I’ve spent the last four years looking for Christopher. ‘Has Dylan developed any special relationships?’ I ask teachers and care workers periodically. The answer is always the same: Not really.

Key workers and ‘adults who help’ continue to be Dylan’s main reference group. Perhaps that’s not so surprising: Dylan has enough self-awareness to recognise that he needs someone to support him with self care, food preparation and accessing the community. He is probably smart to put his emotional energy into those people he knows have a role in helping him with these things. What does he have to gain from investing time in members of a peer group? They are both the problem (too noisy, unpredictable and annoying) and the competition (also vying for the attention of a ‘helping adult’).

While recognising that Dylan may not prioritise friendships with his peer group, communal living is an experience which I want him to have, especially as Dylan has spent much of his life alone with me. At Ruby’s party I was reminded again of the opportunities which social contact brings; a shared house, I told myself, will help Dylan develop emotional and social skills. From time to time I’ve discussed with other parents the possibility of creating such a house. The problem, of course, is that like-minded parents do not necessarily have well-matched children. In the absence of a peer group chosen by me or identified by Dylan his next move will have to be into an established group. Although I am anxious about this it is, of course, no different to class groups in school. If teachers can manage their classrooms so they are positive environments then surely an adult community can aspire to the same goal?

Back to school

IMG_0193Except the influence which teachers can have on peer group relationships is, I know, limited. Although school years have been described as the happiest days of our lives there is increasing awareness that for many children this is not the case; for some they are the most miserable. In education there is a growing focus on the experience of the child with attempts to access the ‘voice’ of young and disabled children through participatory research methods. Against this background, ‘children’s friendship’ is an increasingly popular focus for enquiry.

I attended a seminar given by a colleague on this topic recently. Occasionally one of my undergraduate students opts to focus on friendship for a work placement project and I hoped the seminar would give me ideas for methods and literature I might share. As it was a lunchtime seminar following a busy morning I was concentrating on my sandwich as much as the seminar initially. Soon, however, I noticed that the categorisation of children’s friendship, and particularly its focus on play, were problematic if I made Dylan my reference point. For the next ten minutes I listened with Dylan in mind. This proved a revelation; the conceptualisation of ‘friendship’ simply did not work.

april-may 09 115While my colleague was describing research in the area I tried to imagine not just Dylan but other children on the autistic spectrum. It still wasn’t working. So I pushed to what might be considered the ‘mildest’ end of the spectrum; the place where the Aspie girls hang out. These are the girls who may ‘pass’ for years as neurotypical (sometimes a lifetime) because they are bright and articulate with a range of interests. There is increasing interest in these girls; because the diagnostic tool for autism has been primarily derived from, aimed at and applied to boys it is suggested that girls on the Asperger’s end of the spectrum tend to go unidentified. The growing research in the area suggests that for these girls the social experience of school is often miserable; awkward and on the edges, Aspie girls can find it difficult to interpret the environment or fit in. Some of the girls who experience bullying at school, it is suggested, may fall into this group of undiagnosed autistic.

My colleague started to describe one of the girls in her classroom study. She was on the margins. She wasn’t reporting friendships to my colleague using the same language or concepts as the other girls in the study nor was she mentioned by her classmates as a friend; she was, suggested my colleague, socially isolated. The power of educational research is that it is used to support and develop practice; practitioners build ideas from research into their work and promote them in educational environments. The assumption drawn from this particular study was that the isolated girl needed to be helped to develop more appropriate patterns of social interaction, i.e. to form ‘friendships’ with her peers.

The more I thought about the girl in the case study the more I was convinced that it wasn’t she who needed help but the other children in the class. Surely an inclusive environment would be one in which a group is able to support someone who chooses to inhabit the peripheral zone of a classroom? Shouldn’t we be encouraging children to understand that not everyone wants to be sociable and spend their time small talking with peers? Ought we not to be promoting a model of diversity in relation to social interaction in classrooms rather than a monolithic concept of friendship? This girl and Dylan, I realised, were not only not adequately described by this research, they were problematised by it. ‘Friendship’, it seemed, was another of those norms which feel so irrelevant to Dylan’s life and such an obstacle to his inclusion in society. As the vignettes of Dylan’s interactions with some of his peers show, Dylan is capable of forming meaningful relationships; while they might not follow the dominant model of friendship, they are no less valuable for that. As Dylan’s journey into communal living gets underway I will not doubt reflect further on this issue.

*names have been changed.

Acknowledgements

I am grateful to my colleague for inadvertently providing me with the opportunity to reflect on Dylan’s relationships with others and the conceptualisation of ‘friendship’. My colleague’s research was not concerned with autism but with other issues which I do not address in this post and from which I confess I attempted to divert attention during the latter part of the seminar. My left-field interjections were fielded gracefully 🙂

For information about issues related to ‘Aspie Girls’ there is no better resource than Cynthia Kim’s excellent blog Musings of an Aspie: http://musingsofanaspie.com/about/

Images:

The photos of Dylan and Ella were taken on the banks of the canal at Sheffield and Chesterfield. The pictures of Dylan as an adult were taken at the Under the Stars Disco. The children’s party photos were taken at Dylan’s 6th birthday at a soft play centre. The classroom photo is of a younger me working with a group of primary school children on a writing project. The shadow photo is by (and of) me.