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
What 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
Dylan 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.
Before 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.
I’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.
Although 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.
There 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…
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.