Heigh-Ho, Heigh-Ho…

I’ve written about the social enterprise activity linked to Dylan’s care setting in previous blog posts.  This is a craft and horticulture enterprise with a small retail outlet through which the produce and makings are sold to members of the public. The residents at the home are fully involved in the enterprise and work in the shop, supported by members of staff and the social enterprise coordinator.

When Dylan first moved to the residential setting I didn’t pay much attention to this aspect of the provision. While I supported the principle behind the initiative it wasn’t something I thought Dylan would access; he had never shown any interest in gardening, small animal care or crafts, as a child or adult, so it’s fair to say that I viewed the social enterprise activity on Dylan’s timetable with scepticism.

How wrong I would turn out to be. Dylan’s regular afternoon sessions in the shop proved a great hit with Dylan and the source of some of his most significant learning. Since Dylan moved to the residential setting, just over two years ago, he has taken part in a range of activities including woodwork, jam-making, gardening and the production of arts and crafts. Dylan has also worked in the shop, serving customers.

One of the factors which seemed to be key to Dylan’s engagement with the social enterprise activity was the coordinator (I’ll call him A) with whom Dylan developed an excellent relationship.  Dylan seemed to realise that A had a different role to the other staff at the home and this allowed Dylan to adopt a different approach to the relationship. The difference is subtle but significant; because the coordinator is not involved in personal care, an alternative form of trust and closeness was able to develop.

There have been many highlights to the social enterprise activity which Dylan has taken part in since he moved to residential care but the one I would pick out, first and foremost, is his woodwork.  One day, apparently, A  noticed Dylan gazing over the fence which separates the home from a neighbour’s property. Dylan was transfixed by the neighbour’s  shed where a range of woodworking tools were kept. When this happened on several occasions, A decided to take Dylan to a local lumberyard in order to choose some wood and begin a simple project using some basic woodworking tools.

The results were quite extraordinary. Dylan demonstrated a love of working in wood and some good skills. In time, he was producing goods for sale in the shop.  Dylan, apparently, had several orders from members of the community for these wooden planters, which I was informed by A represented ‘90% Dylan’s own work’  (including the painting, which Dylan also enjoys).

Another highlight of last year’s enterprise activity was when residents at the home entered some of their produce in the local agricultural show. Dylan took 3rd prize for his strawberry jam and another resident was awarded first prize for a pot of apricot and passion fruit. These entries were judged alongside produce from across the region so it was an amazing achievement – and as A pointed out to me, ‘strawberry jam’ is a popular category so Dylan did really well.  The icing on the cake (or the ‘toast under the jam’) is that all of this activity has been recorded in support of a folder of work towards an ASDAN qualification.

When Dylan moved to residential care I was told that health stream funding would mean an end to formal education for Dylan.  It is through Dylan’s residential place, however, that he has accessed the only educational provision he has received since leaving school at 19. The ASDAN framework for these activities is, of course, a plus; what is important is that Dylan has enjoyed the activities and engaged in some valuable learning. As the basis for personal development, the social enterprise activity has been fantastic.

One of the unexpected bonuses of Dylan’s relationship with A has been ‘brum brum’ time. Dylan has a deep interest in vehicles. He loves to watch me drive and often ‘asks’ me about the controls, particularly the gear stick, which fascinates him. Staff noticed that Dylan would often stand watching as A cut the grass with the ride-on mower.  ‘Brum brum’, Dylan said one day. After discussion, it was decided that Dylan would be allowed to ride with A (without grass-cutting blades) in order to get a close-up experience of driving.  For Dylan this was joy indeed!

You might have detected my use of past tense and references to ‘last year’ rather than present time. The reason is that since the end of the summer, following A’s departure for a new job, the programme of social enterprise activities has been on hold. I was surprised and (selfishly) disappointed by the news of A’s resignation, but not exactly shocked; the departure of Dylan’s much-loved key worker earlier in the year had alerted me to the fact that staff move on and that Dylan’s life in residential care will be a series of Hellos and Goodbyes.

Christmas makings, 2015

This is difficult as Dylan forms strong bonds and attachments. Dylan has struggled in the past with the sudden  absence of loved people; the death of his grandmother and his sister leaving home are significant examples but there have also been school and care staff who Dylan has missed enormously when they have moved on. For this reason, I was anxious about how Dylan would react to A leaving; not only would there be an interruption in the scheduling of activities which Dylan has come to enjoy, he would surely miss having A in his life more generally?

Dylan’s wreath, 2016

In the event I didn’t see any obvious reaction from Dylan in the weeks following  A’s departure; Dylan was unsettled some days, but not in a way which could be specifically linked. I was mildly surprised. Perhaps Dylan hadn’t enjoyed the social enterprise activity as much as I imagined? Maybe he thought A was on holiday and would return? Or could Dylan be more flexible than I thought?  I was a little disappointed as well as relieved; while I was glad Dylan didn’t seem distressed, part of me had wanted it to be important enough to Dylan to miss and mourn.

Dylan’s wreath, 2017

Then, in the last two or three weeks, a development. One of the support staff has been opening up the shop one afternoon a week in order to keep things ticking over until a new coordinator is appointed. Dylan pointed at the shop one day, insisting ‘Chri’. It took me a while to realise that Dylan was saying ‘Christmas’. Social enterprise time has been used to make wreaths and hampers to sell in the shop, in previous years, and although Dylan has only lived at the home for a relatively short time this must have become an important way marker for him. While Dylan had coped with the interruption of his regular social enterprise activity, he was not going to accept the absence of Christmas activity. So last week Dylan made a wreath for our door and put together a hamper for his Granddad…

What I am struck by is how important these seasonal rhythms are to Dylan. I suppose if you don’t use speech to communicate and have only limited communication, ’embodied’  sense-making through familiar activities is important. I have often thought of Dylan as needing consistency in his life but perhaps it would be more accurate to think of him as needing constancy. The difference between the two is that consistent things do not vary, though they may start and stop, whereas something that is constant does not stop,  although it may vary. Dylan seems to be able to manage everyday variations – the absence of a face, a change of detail – providing the anchoring rhythms remain.

The closing date for applications for the coordinator role has now passed and I am fingers and toes crossed that Dylan can get back to his woodworking and ASDAN qualifications  soon 🙂

A Room Of My Own

I’ve hesitated to blog about Dylan since my last post, in the spring, because he has been more unsettled and I’ve not been sure what sense to make of it.  Having reflected over the summer, however, I have some tentative observations to share…

Happy Days

While Dylan may have been more unsettled generally, he has continued to enjoy his short breaks and holidays. It is at these times that Dylan is at his calmest and most relaxed (as I suppose is the case for most of us). Since I last blogged about Dylan we have spent time at Spurn Point, where we joined our friends the Corbetts for a Safari, on Anglesey and in Northumberland.

In Northumberland, Dylan particularly enjoyed Alnwick Gardens, with their stunning fountains and cascades, and the gloriously empty Northumbrian beaches and coast path. We had some spectacular walks and a fabulous boat trip around Coquet Island, near to where we were staying. Dylan was calm throughout and happy to accept direction even at times which could have been flashpoints; in Barter Books, for example, he had to be persuaded to reduce his selection of 35 books (!) making what for Dylan were some very difficult choices 🙂  I was impressed by the way Dylan accepted this and moved on from his disappointment. A few years ago, I told myself, there would have been trouble.

Anxious Nights

I very nearly didn’t take Dylan to Northumberland, however.  I had made the booking in the new year, involving Dylan in the selection of the cottage.  Our annual summer holiday is very important to Dylan and (after Christmas) the highlight of his year.  Apart from  the year prior to moving into residential care, when Dylan’s behaviour had been very challenging and I was advised not to take him, Dylan and I have enjoyed a holiday together every year.  So it was with some concern, on the run up to this year’s trip, that I watched as Dylan grew increasingly unsettled.

The incidents being reported by Dylan’s home were not only becoming more regular but more severe.  There are a variety of behaviours but one that has been troubling to witness is the way Dylan breaks the things he loves most at these times.  This is something Dylan does (we think) as a way of managing his emotions. In a sense  it is a positive development in that Dylan now focuses his frustration on objects rather than on people . However, as Dylan typically destroys favourite DVDs and books, the incidents leave him distressed afterwards.

I have spent months re-buying possessions which Dylan has broken, only to see him break them again when he is upset. Recently I have tried not re-buying broken DVDs (Dylan can still access films via his ipad) but this has meant the focus of Dylan’s behaviour switches to other things. I’m not sure this is any better: replacing pyjamas has proved considerably more expensive than re-buying Disney DVDs and far more challenging in terms of maintaining standards of personal care.

It is very difficult to know how to respond to this situation. Clearly these behaviours are functional and Dylan is using them to cope with an anxiety and frustration which we have not yet been able to understand. Various attempts have been made to identify the trigger for these incidents (which almost always happen in the evenings) but so far we haven’t been able to figure out the cause. We have adjusted bedding (is Dylan overheating?); checked that staff are following Dylan’s bedtime routine (is he going twice through his schedule as he likes to?); monitored which DVDs Dylan was watching before an incident (is he getting over-stimulated?); looked ahead at planned activities (is there something scheduled for the next day which is making Dylan anxious?); and checked to see which staff were supporting Dylan (he has his likes and dislikes). None of these have provided a clear answer.

Favourite Things

A couple of nights before we were due to go on holiday there was a major incident. On this occasion Dylan was distressed for a significant period of time and destroyed a number of his things. There had been an incident earlier in the week and I had ordered replacements but they hadn’t yet arrived (this was before I had decided to stop re-buying DVDs).  Dylan must have been frustrated by not being able to work his emotions out on his favourite DVDs so switched his attention to an alternative which, on this particular night, was his Filofax.

Now Dylan loved his Filofax and carried it everywhere – that he would destroy something so precious was shocking. Apart from the physical  effort of tearing through leather and steel I found the emotional significance of what he had done overwhelming. Not realising that Dylan had destroyed his Filofax because he didn’t have access to the DVDs he would normally turn to at these times, and not understanding what was triggering the behaviours, I felt lost without a map.

As Dylan’s weekends at home had continued to be incident-free  I hadn’t been overly anxious about taking him on holiday in the summer but now I doubted my ability to cope. What if Dylan had a major incident while we were away? Would I be able to keep him safe and prevent damage to people and property? Providing I understand the source of Dylan’s anxiety I can respond confidently, but the unpredictability of the situation made me anxious.  It was, I decided, too risky. I telephoned the care home: ‘I don’t think I can take Dylan on holiday’, I said. I collected Dylan from his care home later that day; I would spend some time with him overnight then go away by myself the next day.

The problem next day, however, was that I struggled to pack my bag. How could I go without Dylan? We always spent our summer holiday together. It wasn’t fair that he wouldn’t get to walk the beaches and do all the things which I had told him we would do there. And how would he feel about being left behind? Surely that was likely to make him even more upset? I prevaricated for 24 hours while the holiday cottage I had booked stood empty. Then, the next day, I decided I would risk it. I telephoned the home again: ‘I’m so sorry to mess you around but I think I would like to take Dylan with me after all. Do you think you could help him to pack his bags?’

In the event Dylan was a dream. He was calm and happy all week (even  when the heating in the holiday cottage broke down and we had to manage without hot water for two days).  Potential flashpoints – being overwhelmed by goodies in Barter Books, the bus that failed to turn up – were shrugged off by Dylan with maturity and humour. Spending time with Dylan was a joy…

Precious Space

One of the things which is desperately important to Dylan – and which on this occasion we realised we had got wrong – is that his week must end with a visit home.  I had planned to pick Dylan up en route to the holiday cottage, rather than having Dylan at home the evening before departure, so his weekly programme had ended with a symbol for holiday rather than home.  Although you might think a holiday would be more exciting than a trip home, it may be that Dylan’s distress was triggered by his week not ending where he likes it to.

Although this doesn’t explain the incidents more generally (as Dylan’s programme usually does end with him coming home) it does offer a possible clue as to the source of Dylan’s distress.  Since we returned from our summer holiday it has occurred to me that perhaps what is important about coming home, for Dylan, is the opportunity it gives him to have some peace and quiet. Maybe he looks forward to his visits home not because they involve seeing me (although I’m sure he likes this) but because of the precious space it gives him from other people.

Group Living

Residential homes for adults with complex needs are busy and sometimes chaotic places. Although they are routinised they are also unpredictable environments as the individual needs of residents emerge and require response. For Dylan – who hates noise and has very low tolerance of others – this must be a challenging and sometimes stressful environment.  The mix of residents in a care home is not something any individual has control over – they are a cluster rather than a group – and there will inevitably be clashes of interest and personality.

I had hoped that living in residential care would provide Dylan with opportunities for social and emotional learning, teaching him key skills such as empathy and negotiation in order to live effectively alongside others.  Conscious that Dylan had spent the significant part of his life alone with me, I was attracted by the idea of group living and the possibility that Dylan would enjoy and respond to a livelier home environment than the one I had been able to give him. I even let myself imagine Dylan developing a special relationship – dare I say ‘ friendship’? –  with another resident.

My dream for Dylan probably included a good dose of neurotypical projection; my assumptions about group living, and its potential benefits, were based on my own beliefs and ideas about life as a young adult, rather than viewed through Dylan’s eyes. Recently I’ve realised that the other residents at Dylan’s home are probably nothing more, as far as Dylan is concerned, than an irritation ranging from minor to major proportions.  As a slight irritation they are useful; pairing residents up for outings leads to economies of scale which mean trips can last longer and be to places which are further away and more exciting.  When tolerance levels are low, however, such arrangements are out of the question; even having to share home space, at these times, is a challenge for Dylan.

There have been a number of low level incidents between Dylan and other residents recently which are probably illustrative of Dylan’s need for space.  As a result, Dylan’s programme has been reviewed and his ‘paired activities’ reduced.  Although this means he has fewer ‘big trips’, the impact on Dylan of other residents (and vice versa) is reduced. While it is possible to manage daytime activities in this way, what is perhaps less easy to mitigate are the effects of group living at night.

I don’t know from experience what a care home is like in the evenings because it’s not a time when I visit. It is widely reported, however, to be a period when the ‘institutionalisation’ of residential settings is most obvious. The staffing and environmental pressures tend to be high during the evening; all residents need to be supported with their bedtime routine, often simultaneously and before the arrival of overnight staff. Some residents may have particular anxieties around bedtime, needing  repeated reassurance and the comfort of an individual routine. This is certainly the case for Dylan who expects particular phrases to be spoken, objects to be placed in specific places and bedtime routines (such as going through the next day’s schedule) to be done twice.  Not adhering to his routine makes Dylan anxious and unsettled as, presumably, is the case for other residents.

There will be times, I’m sure, when everyone requires attention at the same time or when one or more of the residents are particularly anxious and need extra support. Responding to  these complex individual needs  must be challenging for staff working in residential settings.  Such evenings will be difficult for residents too; it’s hard waiting for help with something we can’t do for ourselves. Perhaps Dylan’s unsettled evenings are, in  part, a response to the challenge of group living?

A Room Of My Own

My daughter is about to move into shared university housing and I’ve been chatting to her about this over the summer and recalling my own ‘group living’ days. While not wanting to put my daughter off, I couldn’t help but be honest with her the other day: ‘you know what, darling? I hated it.’

Although I appreciated the benefits of my years in shared accommodation, I was relieved when I finally managed to rent a room of my own.  Whatever flexibility and tolerance I may have had in my late teens and early 20s was running out by the middle of the decade; I didn’t want to live with other people’s mess and noise anymore.  I hated getting home to find dirty pots in the kitchen and the sound of a TV or music system booming.  I had learned to live alongside others but I found it stressful; the economic benefits of shared living no longer outweighed the anxiety it provoked.

As I reflected on this I thought about Dylan. I don’t have an autism diagnosis and I found living in shared accommodation difficult – Dylan’s preferences  (keeping windows closed, putting things away as soon as they are used, ensuring nothing is out of place) suggest this is likely to be particularly the case for him.  Certainly Dylan will find noise a challenge; at home, he often asks me to turn off or stop making sound which causes him discomfort or anxiety. The environment is not something Dylan can control in a group living situation, however, and this is no doubt a potential source of stress for him. Even without his complex disabilities,  Dylan’s patience for shared living may be running thin; he is nearly 24, an age at which many young adults start to think about a room of their own.

When Dylan was a small child I assumed he wouldn’t change fundamentally, only grow bigger.  His progress through childhood proved me wrong and his developmental steps – albeit slow and idiosyncratic – surprised and delighted me. The recent developments in Dylan’s behaviour remind me that he will continue to mature as an adult. I hadn’t  previously considered that the type of adult provision Dylan requires might change –  I had assumed the severity of his autism and intellectual disability meant residential care was the only viable option. While residential living is appropriate for Dylan at the moment, now I am wondering if this will always be the case?

A seed has been planted in my mind; perhaps Dylan could live in more independent accommodation, alongside, and as a satellite of, linked residential provision? Dylan will always need 24 hour support and access to specialised care and resources, but the environment through which this is provided could change as Dylan develops. Having to consider what is best for a person who lacks capacity is a burden of responsibility, as well as of love, but  if I were to hazard on what Dylan dreams of, I might say:  ‘A room of my own, one day’…

Capacity And Voice: from silent subject to co-author

I was surprised and delighted when someone I had met only virtually, via this blog, asked whether I would be interested in contributing to this year’s National Autistic Society Professional Conference. The conference organisers were keen to involve parental perspectives and to provide a space for the stories of those affected by intellectual disability as well as by autism; would I be able to talk about transition to adulthood in the context of someone who is ‘learning disabled and non-verbal’?

The invitation to speak at the conference came in August last year. In February this year, overwhelmed by marking and the demands of the workplace, I feared I had been too hasty in accepting.  Unable to meet the deadline for the inclusion of my presentation slides in the conference proceedings I suggested I bring them as a handout. ‘How many copies will I need?’ I asked the conference organiser. ‘540 should do it’ she replied.  I stared at the email in disbelief. Could that zero be a slip of the finger?

WP_20160302_001So it was with some trepidation that I arrived at the Telford International Centre earlier this month. The rally-sized hall with two enormous screens and professional sound and lighting engineers were all the evidence I needed that the zero hadn’t been an error. My session was scheduled as a plenary presentation at the end of the second and final day (rather than to a smaller audience as part of one of the four conference strands). Although I am used to delivering presentations and am generally a confident public speaker, this was easily the largest audience I had faced.  As I hadn’t attended an NAS conference previously, this  was also an audience with which I was unfamiliar.  My anxieties were therefore twofold: not just whether I would hold my nerve but if I had pitched my material appropriately.

I had spent some time, on the run up to the conference, pondering the angle for my talk. Although I was happy to tell a single story,  I wanted Dylan’s specific experience to illustrate issues which might be faced by autistic adults with intellectual disability more generally. My instinct to do this arose from my work as an academic where ‘single stories’ are used to illuminate processes and ideas. I was conscious, however, that autism is not my academic field:  I would be presenting material arising from my craft knowledge as a parent rather than from research. How, then, could I identify a conceptual framework against which the experiences of others might be considered?

Happily, in the run-up to the conference I happened on this (as is often the case, in the most unlikely of places). As the mother of someone who is ‘non-verbal’ I enjoy reading books about silence, an interest which sometimes takes me into theological literature (this post, for example, references the use of silence and hand signs in monastic communities).  In the weeks before the conference I had been reading The Edge of Words by Rowan Williams (the former Archbishop of Canterbury) and it was here I would find my framework for talking about the transition to adulthood of a learning disabled and non-verbal child.

*

Rowan Williams’ interest in silence is in the context of his relationship with God.  In exploring the theological implications of silence, however, he considers other experiences of silence including that of non-speaking children and adults with intellectual disability and autism. Autistic people who lack mental capacity, Williams argues, have ‘a point of view and a capacity to create working symbols’ ; our task, he notes, is to make the space to allow these symbols to ‘surface and connect’.

Some of Williams’ illustrations of this process were familiar to me as they are based on the ideas of Phoebe Caldwell whose work I admire. I found Williams’ development  of these ideas compelling, however; both the poet and the autistic child or adult, he suggests, inhabit difficult territory where they are lost for words, pushed into extremis in the search for a language.  Putting language ‘under pressure’ in this way encourages the use of  poetic practices such as symbol and association to resolve the difficulty. Thus both poets and those with ASD (specifically the ‘non-verbal’) trade in paradox and metaphor.

As a poet as well as a mother I found this suggestion attractive. Dylan, I have often contended, is a poet by nature. Many of the associations and connections he makes in his search for ways of communicating would grace any poem (I give some examples in this post). Williams’ observation therefore made sense to me and helped me to an observation that would become the cornerstone of my presentation: that in order to ‘hear’ Dylan’s voice during transition I had to draw on my identity as a poet as much as (perhaps more than) my sense as mother or academic.

To illustrate this I selected five ‘scenes’ from Dylan’s transition. Some were examples of when I had ‘failed’ to hear Dylan’s voice (perhaps because I had been too rigid in my thinking) and others of times when Dylan or I had made creative connections and communicated more effectively. In scene three, for example, I suggest that Dylan might use ears as a symbol of trust and in scene five I give an example of the application of metaphor (getting lost) to my own decision-making. Transferring poetic tactics to everyday practices is something Rowan Williams acknowledges may be efficacious. While not wanting to suggest gut-knowledge as the basis for all decision-making my presentation concluded:

  • ‘Giving voice’ to the non-verbal requires us to be open to instinct and intuition as well as to logic and calculation.
  • Can involve listening to a young person’s behaviour rather than involving them in formal decision-making processes.
  • Requires us to pay attention to silence and absence of language as well as to excess.

As I put the finishing touches to my conference slides I considered ways of framing Dylan’s contribution to the narrative. Could I insert bracketed silences, indicating potential gaps in the presentation? Include a blank slide perhaps? These reflections encouraged me to review my assumptions about authorship. Previously I had thought of my material as an auto-ethnography with two subjects; now I realised the narrative also had two authors. The day before I left for the conference I changed my title slide: this presentation was no longer ‘For Dylan’, it was with him.

This slideshow requires JavaScript.


References:

Phoebe Caldwell (2006) Finding You, Finding Me. Jessica Kingsley Publishing
Rowan Williams  (2014) The Edge of Words.  Bloomsbury

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.

*

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.

 

Snowdrops, Updates, Opportunities

It’s hard to believe that it’s snowdrop time already; here is Dylan enjoying a woodland walk at Hodsock Priory in the blue yesterday.

hodsock 2016 001

As we were leaving there was an ‘incident’. These are so rare now I was caught off-guard and momentarily thrown back in time to the troubled days I used to puzzle and worry over on this blog. They feel a long time ago, in some ways, but also (literally and metaphorically) like yesterday.

As ever, I’m keeping track of Dylan’s progress by the seasons. When I made my last post, on the 100th day of his transition, we were looking forward to Christmas. With the arrival of the snowdrops I can report that Dylan continues to do well. He seems settled at his new home and to enjoy the rhythm of his days. Dylan has a key worker now and I’m enjoying watching their relationship develop and make a positive difference to Dylan’s life.

Dylan still comes home at weekends which gives us chance to continue the activities, such as walks and visits to the cinema, we both enjoy. In the last couple of weeks, however, I’ve reduced my mid-week visits – a sign of the extent to which Dylan is comfortable and increasingly happy to live his life away from me. Besides, Wednesday night is soft play or Soul Lounge – much more exciting than pizza with mooey 🙂

I haven’t yet claimed the space for myself I said I was looking forward to in my last post; I have been so busy at work, I’m afraid, the poems are still unsprung. I tell myself a little longer under the good earth will do no harm and that, like the snowdrops, they will come when they are ready.

*

This week I’m looking forward to an opportunity that has arisen as a direct consequence of my keeping this blog. I have been invited to speak at the professional conference of the National Autistic Society which takes place  1st-2nd March at the Telford International Centre. The theme this year is ‘Exploring New Thinking And Approaches’ and I’ve been asked to talk about supporting transition to adulthood in the context of someone who is ‘non-verbal’ and has learning difficulties. I’m going to use ‘scenes’ from Dylan’s journey to illustrate some of the ways in which I was able to ‘hear’ (and sometimes to ‘mishear’) his voice. My slot is on the Wednesday but I’ve managed to re-arrange my teaching so I can attend  both days; if you’re at the conference, do come and say hello.

Although I’m used to delivering presentations it will be the first time I’ve given a talk based on my experience as a mother. I’m a little nervous about my material but hopefully there will be something of interest in our ‘single story’. My main aim is to find a way of letting  Dylan ‘speak’ through me so that his voice can be heard. If I can manage that, I tell myself, it will be enough.

Here’s a link to the conference: http://www.autism.org.uk/professional2016

 

 

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…

*

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.

The Humber Bridge

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

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

*

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

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

*

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

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

*

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

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

*

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

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

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

We didn’t have to ask her to explain.

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

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

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

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

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

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

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

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

*

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

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

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

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

*

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

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

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

*

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

Acknowledgements:

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