Three Years and Three Months: A Mother Adjusting

There is increasing pressure to evaluate things immediately. Have your students secured employment within six months of graduating? Did you enjoy this evening’s production? How would you rate your learning on this module?  I tell my students that some of the things they are experiencing will make different sense to them in the future. I’m not saying an instant impression is worthless but I always regret that we don’t revisit our evaluations months (or even years) later.

And so it is the case when supporting a disabled adult to leave home.  Although it is over three years since Dylan moved to residential care, I am struck by the extent to which transition is an on-going process and one that I am definitely still evaluating and adjusting to.

Exhaustion

When Dylan first moved to residential care I set myself the challenge, during the first 100 days, of recording my feelings about the process. That created a rich picture of the minutiae of adjusting to Dylan’s move: my daily blog posts were full of laundry, food and bedtime routines.  What I was too up-close to see at the time, however, was how exhausted I was.

Now I remember sometimes having to stop the car on the drive home from visiting Dylan, too tired to continue safely. There was a particular lay-by where I would sit, windows down, chanting half-remembered poems and songs to wake myself up. When I wasn’t visiting Dylan after work in those early weeks, I would be asleep on the sofa by 7pm. Perhaps my sleepiness was a mechanism for dealing with the emotion of the situation but I think I was also chronically tired after years of caring.

On the run-up to Dylan’s move to residential care I promised myself I would enjoy doing all the things I hadn’t been able to as a carer. I assumed I would be out and about, taking advantage of my sudden freedom to do as I pleased. What a mistake that turned out to be. Only very recently, more than three years after Dylan left home, have I found myself with a little more energy. I have started going out after work more often and staying up slightly later in the evenings.  I am amazed how long it has taken me to feel able to do this.

Involvement

Since Dylan moved to  residential  care I have phoned the home almost every evening.  This is not something I’ve enjoyed doing (I’ve written about that here).  An attempt to use Facetime with Dylan hadn’t worked, however, so a  telephone conversation with staff was my only option and my need for reassurance about Dylan was enough for me to overcome my dislike of using the phone.

The calls have been a hit and miss affair. Sometimes I was able to speak to someone who had been working with Dylan that day but more often the member of staff had to look for information about Dylan ‘on the system’ .  My experience has ranged from feeling reassured after a friendly chat to being upset  by staff abruptness. Evening  telephone calls from parents, I quickly realised, were not usual; even having established that nine o’clock was the best time to call, I knew my calls could be an irritation, particularly if staff were busy. They  were important to me, however; this was my son and I wanted to create a space in my day to connect with him.

Although the calls could be frustrating they helped me to feel involved in Dylan’s life. This summer, however, I had to re-think my routine. In June I heard that I had won a Northern Writers Award which involved funding to be used to complete the book of poems I am working on. I needed to spend some time away from home, free of distractions, in order to get on with the project. At the artists’ colony where it was suggested I go for a week, however, I would have only limited and intermittent contact with the outside world.

What was I to do? I knew I couldn’t turn down the opportunity because of a routine which was (I  knew in my heart of hearts) beyond its use-by date.  As Dylan was not aware of my daily calls, he would not know I wasn’t calling the setting each day; the only impact would be on me.  What was the point of me knowing whether or not Dylan was settled for the night? I couldn’t do anything about it. Staff would contact me in an emergency.  There was no guarantee that Dylan wouldn’t get ill or have an accident while I was away, but it would be very unlucky. I knew I had to go.

So as not to spend my week away worrying about being out of contact with Dylan, I practiced for it the week before I left:  I didn’t make any telephone calls in the evening or send any emails, other than responding to a request for information. The trial week helped me to break my evening routine and I coped perfectly well, while I was away, without a mobile network or internet connection.  In fact I did more than ‘cope’; I had a productive time and returned with the confidence to go away again.  Furthermore, I seem to have broken my habit; I haven’t made any evening phone calls since.

I report this because I am struck by how individual a process transition is for parents.  I have no doubt there are a range of parental responses to a disabled adult child moving into residential care. Probably there are some parents who never make an evening phone call, some who call occasionally and some who make regular calls for a limited time.  Perhaps some  parents telephone every day for the rest of their lives, but I suspect this is rare. I’m prepared to accept my own extended transition period might have been a bit of an outlying spike in the pattern of parent behaviour,  but everyone has to find their own way.  I am very grateful that staff at Dylan’s care home allowed me to take the time I needed and that no one ever suggested to me that I didn’t call.

Although this is progress there is a downside as well.  Since I’ve stopped making daily phone calls I don’t feel as involved in Dylan’s life as I did. Some evenings, to feel closer,  I bring Dylan to mind and sit with gentle thoughts of him. I suppose this is not dissimilar to my meditations on other people I love who have moved away. In this respect it is, I suppose, a natural letting go.

Letting Go

There has been another ‘letting go’ recently; since the summer I have accepted a more relaxed approach to the dietary routines which have previously been an important part of Dylan’s care. This was triggered by our holiday on the Isle of Man where  it was difficult, some days, to find a vegetarian option which Dylan wanted to eat. Two or three times during the week I let Dylan have a non-vegetarian option rather than ask him to wait until we found something else or were back at the cottage. This made eating in the community easier for Dylan and less stressful for me.

Although I never experienced Dylan’s vegetarian diet as a ‘problem’ while he lived at home, it has proved one of  the most challenging aspects of his move to residential care. Dylan has a limited diet (only things which are beige and bland to taste and smell) but he eats with huge enjoyment (I have written about Dylan’s favourite foods here).  When Dylan moved to residential care, something which was very important to me was that he should continue to eat familiar food which could comfort and support his transition. The psychological benefits of such foods are well-documented in relation to communities in exile and more generally.

My ‘100 day’ posts often focused on food and my frustration at the constant need to justify Dylan’s vegetarianism. At the height of the silliness, it was suggested that this might have to go to a ‘Best Interests’ panel for discussion as it could be considered a deprivation of Dylan’s liberty to eat meat. I asked whether Dylan’s diet would be similarly challenged if he were a vegetarian on religious grounds? When I claimed ‘cultural practice’ , however, I was asked to explain in what respect Dylan’s vegetarianism could be classed as ‘cultural’.

The constant  challenges and explanations were wearing.  Although the issue didn’t go to a Best Interest panel, in the event, Dylan’s vegetarian diet has been the focus of constant discussion at periodic reviews and  whenever there was an ‘incident’ involving food. Many of the ‘incidents’ in relation to food turned out to be triggered by Dylan being offered unfamiliar vegetarian foods.  So while he may love ‘vegetarian Kiev’, this is a particular brand of Kiev (quorn, entirely beige) not any old Kiev  – and especially not a Kiev made from aduki beans (wrong colour, texture and flavour).  So when Dylan rejected an aduki bean Kiev one night (and grabbed a chicken Kiev  being eaten by another resident) it did not mean that he does not enjoy his vegetarian diet.

Well, I am rehearsing old arguments here.  Although I found the issue of food the most exhausting and frustrating aspect of Dylan’s move to residential care, things did settle down eventually and fewer questions have been asked, recently.  In this context, my relaxation of Dylan’s dietary rules this summer could seem odd.  I am sure it surprised staff when I announced, at Dylan’s recent review, that I was happy for him to have a non-vegetarian option while he was out in the community if he preferred it to the vegetarian option.  Having realised, while we were away,  that this can be a sensible option, it seemed only right to apply the same principle to Dylan’s everyday life.

How do I make sense of this change of heart?  Mostly, like the relaxation of my daily telephone calls, as part of the process of adjustment to a child moving into residential care.  I think this is particularly relevant in the context of someone who lacks capacity. If Dylan cannot make informed decisions about issues such as diet, who should do so on his behalf?  Parents are used to taking such decisions and, I would argue, continue to be best-placed to inform decision-making during transition.  But over time (three years and three months, perhaps) it is probably right that a parent starts to step back and relax into a partnership approach.  In this spirit,  I have decided to trust staff to offer Dylan a vegetarian diet at the home but to have flexibility, if they need it, when out and about.

Is there any loss involved in this, as with the reduced telephone contact?  I think so, yes. As I noted above, the food we eat reminds us of home; it connects us to our family and community and creates a sense of belonging and identity.  Whatever a health care professional may say, I claim diet as ‘cultural practice’.  In this respect, even a slight shift in Dylan’s separates him from home a little. But this is probably no more than the adjustments my daughter might make to her diet as she learns to live away from home. So perhaps it is a sign that, like his sister, Dylan has flown…

 

Images:

The photograph of the porthole window is the view through the shipping container I stayed in during my residence at Cove Park. The photo of the rainbow over Loch Long  (featured image) was taken from my writing desk at the end of my week away. The other photographs were taken on outings and home visits during the last few weeks.

Being Harry: Autism and Virtual Reality

While I was watching England hold their nerve against Columbia last week,  Dylan was in Whitby with his key worker and another member of staff. Dylan is impatient for the sea and the overnight trip had been planned to help Dylan manage the wait-time for his summer holiday.

I know that not everyone is interested in football. However, the progress of the current England team is so unexpected that even those without any interest  in the game (my Dad, for example) are aware of what is happening.  It feels a bit like fantasy football.  I’m sorry that the trip has coincided with the England match, I said to Dylan’s key worker.  I had an idea he might otherwise have been  watching the match in the pub with his mates.  That’s OK, he replied.  I would have been working anyway.

Team Changes

Dylan’s key worker also told me he would be moving on soon.  I wasn’t surprised by the news. I understand that young people, wanting to start a family of their own or buy a first home, have financial considerations which affect decisions about work. As I’ve noted before, support workers are not well paid for the job they do.  Caring for others is one of the most demanding and valuable of roles and yet it is also one of the mostly poorly rewarded. As a consequence, staff turnover is high.

Dylan has been lucky to have been matched with experienced staff  but, even so, he has already had three different key workers. When Dylan’s first key worker left I was devastated. It hadn’t occurred to me, at that point, that this would be a feature of life in residential care. When Dylan’s second key worker left, after a fairly brief succession, I realised the role would always be temporary. The key worker may be the warden of the key but I shouldn’t assume they would be around long enough to unlock the door (as it were).

A potentially positive outcome of this situation, however,  is that it has helped me identify one of the  arguments I will make on my application to be appointed Dylan’s Welfare Deputy:  given the high staff turnover in the care sector, the continuity of support which a family member provides is invaluable, particularly in the context of someone who, as well as lacking mental capacity,  is autistic and non verbal.

Harry’s World

An American friend emailed recently to say she would be visiting with her teenage children next month.  Maybe we could visit Harry Potter World? she wrote.  I was excited by the idea but when I looked online I realised it was impossible; Harry Potter World is already booked up for the summer.

When Dylan’s first key worker moved to a new job she organised a trip to Harry Potter World for Dylan and another young adult. As well as a fabulous day out for the staff and residents, this was a good way of marking E’s departure. So when Dylan’s current key worker told me he had a new job, I commented that the trip to Whitby was perfectly timed in terms of helping Dylan make a connection with saying goodbye.

The trip to Harry Potter World was Dylan’s first immersive experience (I’m sure he would love Disneyland but I’ve never had the oomph to take him). Dylan, apparently, had a marvellous time,  ‘laughing all day’. They had arrived slightly early for their tour, having driven down from Yorkshire,  and the Harry Potter staff, realising the wait might be difficult for Dylan, had let them join an earlier tour and proactively made adjustments for Dylan, such as front row seating.  I couldn’t fault their practice, his key worker told me, it was an absolutely brilliant day.

 

Virtual Reality

Afterwards I wondered what Dylan had made of the experience. Did he think he was at Hogwarts? Does he believe Harry Potter is real? I remembered a conversation with a clinical psychologist at a time when Dylan’s ‘behaviours’  were a cause for concern. As we worked through his ‘incident charts’ the psychologist noted the link between Dylan’s anxiety and the films he watched.  It may be the case, the psychologist suggested, that Dylan cannot differentiate fantasy from reality. Perhaps, when he is watching a distressing scene in one of his DVDs, he finds it difficult to regulate his emotional response. Dylan’s extreme reactions to some of his films are understandable if you imagine them as responses to situations he believes are real. After all, these are extreme situations:  separation; loss; death; war.

Apparently there are ‘immersive cinemas’ which offer a total sensory experience. As well as a film being a visual and aural event, the senses of smell, touch and taste are engaged.  Thus during an ocean scene the audience might be sprayed with water; in a domestic setting, smells of home cooking could be released into the auditorium. I’m not sure whether this would be a good or a bad thing for Dylan, given his heightened sensory function.

I have similar reservations about the possibilities offered by Virtual Reality Headsets.  As they have become available on the mass market I’ve toyed with the idea of buying one for Dylan. Some aspects might appeal  – Dylan spends so much time watching films that the idea of him being able to enter an immersive and participatory environment is quite exciting. I’ve seen some people, however, become disoriented  when using the Headsets and describe the experience as unsettling. Equally, therefore, I can imagine Dylan being made anxious by such full engagement of the senses.

Fantasy Football

Right now, I feel as if I’m wearing a Virtual Reality Headset. England? In the World Cup semi-final? For the first time I changed my plan for spending time with Dylan last weekend. After the 120 minutes plus penalties marathon against Columbia earlier in the week, I wasn’t sure Dylan and I could spend Saturday afternoon together without one or both of us becoming frustrated. Dylan can cope with a little bit of football on TV but he has his limits. And I really wanted to watch the England v. Sweden match. Could I pick Dylan up on Sunday instead of Saturday? I asked staff.

It really does feel like a Fantasy Football Tournament. The scenes from the Samara Stadium last Saturday seemed beamed from a parallel universe.Are those fans trapped in Virtual Reality, I wondered? Has my TV turned into a giant VR Headset? When England won I toyed with the idea of getting on a plane to Moscow to find out.

If England do get to the World Cup final this year, I told myself, someone will set up an It’s Coming Home theme park where we can re-live the matches, as players or fans, in a fully immersive world.  The theme park will probably be somewhere just off the MI –  hopefully in the north, rather than the south, in honour of the contribution made by South Yorkshire to the winning England team. So while Dylan hangs out with Harry Potter, I can celebrate with Harry Maguire…

 

 

Note:

The photographs of Dylan at Whitby and Harry Potter World were taken by staff on the trips.  The other images are sourced from the Internet and to the best of my knowledge are copyright free.

The photograph from the 2018 World Cup shows England players celebrating a goal in their match against Sweden at the Samara stadium on Saturday 7th July. The goal was scored by Harry Maguire (second from right in the photo) who is from Sheffield, my hometown. In the photo he is being congratulated by John Stones who is also from South Yorkshire (Barnsley). The photograph shows Kieran Trippier on the left and another Harry (Kane) on the far right.

The final photograph shows the 1966 England World Cup squad. I was alive but too young to remember 🙂

 

The Book Hedgehog

In a previous post I lamented the departure of a member of staff who had coordinated the social enterprise activity at Dylan’s setting. During the recruitment process for a new social enterprise coordinator, the workshop and shop at the residential setting remained closed to members of the public and to residents.  This meant that there was a gap in Dylan’s daily schedule which had to be filled with alternative activities. Although staff did their best to keep Dylan purposefully occupied, he was more unsettled during this time and clearly missed his work in the shop.

In my post in December I described how, on the run up to Christmas, Dylan had been insistent that the shop be opened so that he could make the holly wreaths which he associated with that time of year.  I reflected:

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.

I am very happy to report that a new social enterprise coordinator is now in post and that Dylan has resumed the ‘anchoring rhythm’ of his daily work in the shop. This seems to be going well. Since the shop re-opened Dylan has been more settled and has seemed generally happier.  As well as enjoying the rhythm and structure of working in the shop, it helps that Dylan knows the new coordinator; ‘J’ worked at the National Autistic Society school which Dylan attended so she is a familiar face. Not only does this mean that trust is already established, the continuity in terms of J’s knowledge of Dylan’s interests and skills is fantastic.

The arrival of J has provided an ideal opportunity to review Dylan’s work and to introduce new activities.  Since the social enterprise activity resumed Dylan has participated in a range of arts and crafts activities including candle making, paper printing and model making. He has also made ‘book hedgehogs’; these are ingenious creations, made by cutting the pages of a book. I am told that Dylan worked carefully and methodically at the hedgehogs; this is not something I would have expected Dylan to enjoy and reminds me (again) of the importance of keeping an open mind. As well as introducing Dylan to new activities, J is planning to continue the woodwork which Dylan enjoys so much.  She has identified some fantastic potential projects for Dylan and a new woodwork bench is due to be delivered.  Some new, and more accessible, qualifications are also planned.  Exciting times ahead for Dylan and the other residents  🙂

In my December post I drew a distinction between ‘consistency’ and ‘constancy’, suggesting Dylan might need the latter more than the former.  At the moment, serendipitously, Dylan seems to have both; the new coordinator provides Dylan with some consistency while the work offers him constancy.

Residential Snow

When Dylan first moved to residential care one of the things that made me anxious was the idea of not being there for him if he became upset or was ill. The setting isn’t far from where I live, relatively speaking, but the quickest cross-country route from home takes 50 minutes; as it’s all but impossible by public transport I worry about being unable to drive.

As I’m not a particularly confident driver my anxieties about not being able to get to Dylan are compounded by bad weather.  I know emergencies are rare and that the chances of Dylan having an accident don’t increase when it is snowing  (well, perhaps a smidge).  I also accept that there is no need for me to drive to the home in response to minor incidents; familiar staff are there to support Dylan at such times. So it ought to be possible not to worry about the weather, even when conditions are arctic. This is not, however, necessarily the case.

Routine Emergency

One of the most important things to Dylan is his visual programme. He has various routines around this, one of which is that he likes his week  to end on the day he comes home.  Dylan really enjoys looking through his ‘new programme’ with me while he is visiting. For this to work, however, we need to agree Dylan’s weekly programme two or three days before he comes home for the weekend. What this means is that some of his activities are planned as much as ten days before they are to happen.  The weather  forecast is not something that can be reliably factored into planning.

At the height of last week’s snowfall, all planned activities at Dylan’s residential setting had to be cancelled as it was no longer safe to transport residents by car. This meant that a programme change had to be communicated –  not easy for Dylan, but he accepted it well and was happy to spend time in the snow instead.  The possibility that Dylan might not make it home at the weekend, however, worried me; this was not a disruption to routine that Dylan would so easily accept.

Essential Work

As well as feeling anxious about getting myself to Dylan’s home I worried about whether the care home staff could get to work. I know this is not my responsibility but because staffing is essential in a setting such as Dylan’s I still thought about it. The residents are bound to be unsettled by the change in routine and the inability to make trips out means they have to spend more time in the home together than usual. This is potentially a tricky situation and the best resource is plenty of staff.

I need not have worried of course; the managers had everything under control and the staff did what essential workers do and made it through the snow to the home.  When I asked how they had managed on the worst of the snow days, one member of staff told me that those who had got through ‘stayed on’, doing double shifts and sleeping over.  So while I spent most of the week working from home, work at Dylan’s home continued as normal.

No Snow Drama

This triggered two reflections. Firstly, that when we refer to ‘essential workers’ at times of extreme weather or public holiday we rarely think about the thousands of staff who work in residential settings supporting  the most vulnerable members of society.  Because the focus in such settings is about keeping residents calm and comfortable by maintaining routine and structure,  snow and ice doesn’t generate dramatic footage for the national news. Workers driving emergency response vehicles, Chinook helicopters and roadside recovery trucks may appear more heroic, but my heroes last week were the staff who took care of Dylan without turning the weather into a drama.

The second thing was a memory of when Dylan was living at home. The experience is still recent enough for me to remember how challenging it was to keep Dylan calm and happy during extreme weather. The disruption to Dylan’s routine if his school or day centre was closed, and the difficulty of being confined to a relatively small space,  without access to the therapeutic resources and spaces he needs, would often trigger anxiety and frustration. Recalling this, I was glad that Dylan was not only safe, but in the best possible place.

Weekend Work

There have been wintry weekends while Dylan has lived at his residential home but they have never prevented me from collecting Dylan for a home visit. With England in the grip of extreme weather, however, the situation was different. By the end of the week I had accepted that I could not get to Dylan and that he was safest staying where he was. The snow was so heavy that rather than fret about how Dylan would respond I settled into the idea;  there was nothing could be done and it would probably be good for me to have a break from caring for Dylan.

In the event, however, one of the support workers (a more confident driver than me) brought Dylan to me and collected him the next day. Although this was not quite the routine Dylan was used to it meant he had some time at home as well as relieving pressure on staff at the residential home. Dylan and I enjoyed our time together but I was a bit anxious about not being able to take him out for an activity as I usually do. This made me realise that Dylan and I have constructed a weekend routine which isn’t sustainable; there will be other times when the weather closes in and (in due course) age and ill-health to prevent me from looking after Dylan. I need to prepare us both for this somehow. I think an unsnowy break from our weekend routine may be on the horizon…

Dylan enjoying himself in the residential snow…

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’…

At-Ankle Support

wp_20170205_013As I’ve mentioned previously, Dylan has a tendency to jump. When I say jump I really mean bounce. Or perhaps pogo is a more accurate description. Because Dylan’s jumping seems not to be to touch the sky (as Higashida explains this behaviour in The Reason I Jump) but to relieve extreme anxiety. There are happy exceptions, but Dylan’s jumping is mostly a sign that something in his world has gone wrong.

I’ve always been a little bit scared of Dylan’s jumping. It doesn’t sound threatening, I know. Jump.  Quite Innocuous really –  fun and friendly, even. But when someone is pounding up and down, over and over, higher and higher, bending at the knees to increase height and acceleration – well, in a restricted indoor space it is intimidating and outdoors, in a high risk environment, it can be terrifying (I will never forget a cliff top episode that nearly ended in tragedy).

Dylan’s jumping has been less of a concern since he moved to a specialised setting where his anxieties have reduced. When he needs to jump he has staff to support him and a safe environment. The rooms at the residential setting are larger than an average home environment and there is space for Dylan to jump in order to manage his anxiety. Because, as Dylan’s Behaviour Support Coordinator stresses, the behaviour is functional for Dylan; if his anxiety escalates then the sensory experience of rhythmic leaping into the air is something which Dylan seems to find helpful.

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wp_20170205_014But last week there was an accident; Dylan jumped so hard that he either landed awkwardly on his ankle or caught it on furniture. When I received an email to say that Dylan had hurt his ankle while  jumping I wasn’t surprised in the sense that a jumping-related incident has been an accident waiting to happen for years. I was a bit alarmed, however, by the severity of the injury and the implications for Dylan. It took several phone calls and emails to reassure me that I didn’t need to go rushing to the home to see Dylan myself; there was nothing I could do that wasn’t already being done to support him. And although the photograph of Dylan’s ankle was a bit of a shock, it was helpful .

We have become so used to exchanging images by email it’s easy to forget that this is still a recent development; a few years ago I would have had to drive to Dylan’s care home to see the situation for myself. Without doubt, new technologies are helpful in supporting communication between a residential setting and family home and thus in promoting an active partnership around care. Daily phone calls and email updates not only reassured me about Dylan’s injury, they enabled me to take an active part in discussions about how to support him with it.

Helping Dylan to manage pain and encourage healing is challenging as Dylan won’t take oral medicines and will tolerate only very limited interventions. Furthermore, Dylan is a very active young man who is constantly on-the-go. The ankle injury was therefore significant in that ‘resting it’ was not realistic; sitting quietly with his feet up was not something Dylan could understand or accept.  The doctor, however, advised that there were benefits to keeping an ankle moving after such an injury as some mobility promotes the healing process. It was really therefore a question of degree:  ice-skating on Friday would have to be cancelled but a brief walk around a favourite museum on Wednesday would be OK.

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wp_20170205_015Happily Dylan accepted the changes to his programme. He also tolerated the application of anaesthetic gel and a support bandage in the days after the injury. I think Dylan grasped some of the implications of his injury and perhaps even had a basic understanding of cause and effect in relation to the behaviour which had caused it. What I didn’t believe, however, was that this would be enough to prevent Dylan from jumping again. On the contrary, I suggested to staff, wasn’t it likely that Dylan would be more prone to jumping due to his frustration at the situation? As far as I was concerned, there was a real danger that Dylan would damage his already-weakened ankle by jumping on it. And even if he didn’t, I said to the care home manager, the incident had made me realise that we had to do something about Dylan’s jumping. I didn’t want this to happen again.

Although I was sorry that Dylan had to lose his fabulous first key worker recently, as E’s new role in the organisation is regional Behaviour Support Coordinator, Dylan still gets to benefit from her expertise. So when I asked for a review of Dylan’s jumping after the incident it was to E that Dylan was referred. The incident analysis which she conducted suggested patterns to Dylan’s jumping. This particular incident, for example, seems to have occurred when Dylan became frustrated about his swimming towel not being folded in a particular way. A newish member of staff wasn’t aware of the importance of this to Dylan who became frustrated at his inability to communicate how he wanted the towel folded. Tracking through Dylan’s records revealed other incidents when Dylan had become frustrated by a routine not being followed.

When Dylan chooses a jacket potato for lunch, for example, it is very important that two portions of butter are placed on the side of the plate (so he can put the butter on himself) rather than the potato being served with butter already added. Such details may seem minor to us but they can mean the difference between happiness and despair to Dylan. The thing is, E noted, she had got to know Dylan so well during her time as his key worker that she instinctively built Dylan’s routines into her care and modelled these to other staff with whom she was working.  Furthermore, members of staff who know Dylan well are familiar with the signs that he might be about to bounce and are often able to react in order to head off the jumping. There had, however, been a number of staff changes and some of this ‘craft knowledge’ of Dylan’s routines had been lost.

While Dylan’s basic care routines are recorded in his care plan there was perhaps a need, E suggested, to produce more detailed written guidance about Dylan’s context-specific routines. As the review of Dylan’s records had suggested that a significant number of Dylan’s jumping incidents happened around food choices, E suggested that Dylan’s communication book be enhanced so that he is more aware of what food options are likely to be available on a particular day. This might help Dylan to manage his expectations around meals, particularly in the community.

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wp_20170205_012Developing the details in Dylan’s care plan (for staff) and schedules (for Dylan) are strategies which focus on communication.   There is nothing surprising or new here; it has been clear from the beginning of bouncing that underneath the behaviour lies Dylan’s deep frustration at being unable to communicate his needs and desires. We rely so heavily on the spoken and written word to communicate that I imagine whatever we do and however much we try, we will never be able to take away Dylan’s frustration entirely.  As well as it being impossible to have pictures/symbols available for every eventuality (even digitally), Dylan’s significant intellectual disability means that he cannot always comprehend the nuance of communication through imagery.

Nonetheless, reviewing and developing the symbols we use with Dylan has to be worth our constant time and attention. E has some other ideas for communication which we hope will empower Dylan. She has suggested introducing a key ring system, for example, to promote independence.  Again, there is nothing radical about this  – I tried using a key ring with Dylan when he was around seven years old. But the point is to go at Dylan’s pace and to find methods with which he’s comfortable; some of the strategies I tried with Dylan as a child, without success, may be more effective now.

While some autistic children and adults are confident users of communication software, this hasn’t been something which has worked for Dylan so far. I suspect this is because of Dylan’s dual diagnosis of intellectual disability and autism, a combination which impacts significantly on communication and thus on Dylan’s life more generally.  As Dylan’s ankle injury demonstrates, this can affect physical health as well as emotional well-being.

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wp_20170205_011I’ve written previously about the importance of promoting positive contact with the health services for autistic children and adults with intellectual disability.  Happily, the annual ‘Cardiff Check’ seems to have borne fruit in that Dylan seems comfortable visiting doctor’s surgeries and hospitals, although he won’t tolerate much in the way of intervention.  Coincidentally, Dylan’s annual review was scheduled  last week so the GP was able to check his ankle during the appointment. It had been, the doctor suggested, ‘a very bad sprain’ but seemed to be healing nicely and he had no concerns.

My concerns that Dylan might damage his injured ankle by bouncing on it have, happily, not come to pass.  ‘I absolutely take your point about improving communication’, I had said to E after Dylan’s accident, ‘but what if Dylan does start to bounce? We need to be able to redirect him, at least while his ankle is injured’. E suggested that we encourage Dylan to make use of his exercise ball at such times; seated-bouncing on his ball, she explained, would deliver the rhythmic movement which Dylan appears to benefit from but the ball would take the impact of his weight rather than the floor. Staff could use a ‘Stop’ card with Dylan at the onset of bouncing and re-direct him to the exercise ball.  Longer term, the aim would be for Dylan to develop the habit of seated-bouncing rather than his standing leaps.

While Dylan’s ankle has been sore he has been happy to make more use of the exercise ball. Dylan uses such a ball as part of a morning exercise routine so it is a familiar piece of kit. Although this is not something which can be used outside the home, it feels positive as a strategy for promoting emotional self-regulation. The hope is that once Dylan has accepted re-direction to the exercise ball he will use it voluntarily, instead of jumping.  As he learns to manage his anxiety, staff will support Dylan to use other resources, such as his weighted blanket and a ‘sensory box’. This sensory approach makes sense to me; I bought an exercise ball for Dylan to use at home and I must confess to having bounced on it myself, one evening last week, after a particularly stressful day 🙂 As ever, there are self-care lessons to be learned from caring for Dylan.