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’…

Emotes

Dylan turned 23 this month. To celebrate his birthday I took him to Chester for a short break. A trip to the zoo and an overnight stay in a ‘moon hotel’ was followed by a day walking the city walls and looking at the river, canals and cathedral. These are things which Dylan loves and we had a marvellous time.

This year I gave Dylan a remote-controlled car for his birthday. He has taken an interest in cars recently, pointing them out to me and saying ‘car’. His particular interest seems to be black taxi cabs but I couldn’t find one so he has a red saloon instead. Still, its headlights and rear lights flash and it moves left and right as well as forwards and back. It’s quite exciting but a bit tricky to manoeuvre so I’m not sure it will work for Dylan who could find it frustrating  (or pointless).

I didn’t have a particular gift in mind for Dylan this year so I looked around a ‘gifts and novelties’ section of a department store for inspiration.  As well as the car, I picked out a ‘Gentleman’s Hardware’ picnic box which Dylan seems to be enjoying. He often takes a packed lunch on his trips out so this is something he’ll get lots of use out of. While I was in the store, my attention was also caught by a box of ‘Emotes’…

Because Dylan uses symbols to communicate I’m always on the look out for visual resources and the Emotes looked interesting. Essentially, the product is an emoticon glossary, presented as a card index: one side of the card has a picture of an emoticon and the reverse side carries a definition and explanation of use. A fun present for a social media junkie. I flicked through the cards in the box, embarrassed (by how much I had misunderstood) and  amused (pile of poo? really?).

I don’t text very much or use social media language. I understand happy and sad faces, and I include them in messages sometimes,  but that’s about my limit. I’m too scared of making a faux pas after spending years thinking that ‘lol’ meant ‘lots of love’ and wondering why people I hardly knew kept sending it to me. Now, I try and avoid inserting funny faces into my emails and texts.

But while I could clearly learn things from the cards, it wasn’t really myself I was thinking about. Could the emotes help Dylan to understand his emotional life and communicate his feelings, I wondered? Some of the Emotes are the same as makaton signs so would be reassuringly familiar, but there were symbols that might develop nuance and range. Here is worried for example, an emotion which I think Dylan experiences quite frequently:

And this is confused:

Although I spend most of my time encouraging Dylan to find his voice, there are times when this might be useful:

And there’s even a blank to create your own emote. I like the idea of leaving it empty, actually; having an option for not feeling anything strikes me as pretty useful. While the box includes some inappropriate cards (a gun), others would almost certainly amuse (that pile of poo)  or excite Dylan (piece of cake). The set cost £12.00.  I decided to buy one – not to gift wrap  (Dylan would probably think that a disappointing present) but to introduce as part of the on-going attempt to support Dylan’s communication.

I don’t think that, so far, they’ve been of much interest to Dylan.  When I showed them to him on his birthday he had a giggle at the pile of poo and put the picture of a piece of cake in the plastic stand. Fair enough – this was the bit of his day he was most looking forward to.  Dylan also enjoyed the ‘fist bump’ card and quickly grasped this as a greeting or alternative for ‘good job’. Two weeks later, Dylan is still fist-bumping me. The cake is still in the stand, however, and Dylan shows no interest in changing it or in looking at the other symbols. ‘Never say never’, is my mantra, however;  Dylan may pick them up one day.

I do think Emotes are a potentially useful resource for people (children or adults) who struggle to understand socio-emotional communication. And you don’t need to have an autism diagnosis to be in that category lol 🙂

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.

This slideshow requires JavaScript.

 

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.

*

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.

*

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.

*

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.

The Physical And The Emotional

wp_20170101_008I’d been reflecting that I was finding it hard to move on; 18 months since Dylan had moved to residential care and I’d managed hardly any of the things I’d told myself I was looking forward to.  I wasn’t sure what I’d done with the extra time; in fact I’d written fewer poems, been to the cinema less often and swum hardly at all.

I seem to have spent a lot of time thinking about Dylan, I said to a friend. That’s understandable, she replied. You haven’t stopped caring full-time for Dylan emotionally just because you’re not taking care of him physically.

*

wp_20170101_009So I’ve been thinking about the relationship between the physical and emotional labour of caring for Dylan. One of the things I was concerned about when Dylan moved to residential care was that I’d forget how to look after him.  I worried that I’d lose the rhythm of bathing and shaving him if I wasn’t doing it every day. I feared the habit of being alert might leave me; that I wouldn’t hear the change in his footsteps or sudden silence summoning me to check that all was well. I was relieved I no longer had to do all the caring single-handed but I envied those who had taken my place; the fruits of this labour would now be theirs.

And the rewards of physical caring, I came to realise, are rich indeed. In this blog post, written 29 days after Dylan moved to his residential setting, I reflected on the possibility that chores are a currency of care. If you have a disability that means  you can’t take care of your own needs, perhaps care-giving acts, such as laundering clothes, acquire emotional freight? In the aftermath of Dylan leaving home, I realised that the physicality of caring for him had been a language of love.

I have learned that we don’t forget how to care for someone physically if we no longer do it every day; the rhythm is as deep in my body’s memory as climbing the stairs or swimming a length of the pool. The challenge is not remembering how to care for a person we love but finding a way of sharing responsibility for this. Perhaps, as a long-term single parent, I am less used to this than others. I have asked myself whether I would find it easier to share Dylan’s care with others if I had had to negotiate this with another parent while Dylan was at home. As I’m sure I’ve reflected before, there is something limiting as well as liberating about having sole care.

*

wp_20170101_010And although Dylan is 22 years old he does still need physical care; he has to be supported to wash, dress, eat and to access the activities which he enjoys.  Since Dylan moved to residential care his ‘care plan’ has developed to reflect minor changes in his support needs;  Dylan needs more help selecting appropriate clothes than staff realised, for example, but minimal supervision when organising his daypack.

Sometimes Dylan shows a new streak of independence. When I arrived to collect him from his residential setting at New Year he took off at high speed. Where is he going? I asked staff. They weren’t sure. A support worker followed him and returned with a smiling Dylan: He’d gone back to his bedroom, she explained, to fetch his water bottle.

I was absolutely delighted.  The water bottle was new –  a present from Santa – and I wasn’t sure whether or not it was something Dylan would use.  It turned out that in the week since Christmas Dylan had got into the habit of filling it up each day and taking it with him on daytime activities. I could tell the present was a success – the fact that Dylan had remembered it, when we had not, indicated this. As we drove to the seaside to celebrate the new year I reflected that this may well have been Dylan’s most successful Christmas present this year.

*

wp_20170101_011I used to love listening to Alistair Cooke’s Letter from America on Radio 4. In one programme he introduced me to the term ‘not on my watch’, a plea which Cooke suggested American presidents made in relation to errors happening during their term of office. I have taken this phrase and applied it to my various responsibilities over the years, albeit for less-significant events. ‘If the course fails to recruit, let it not be on my watch’. ‘If the External Examiner isn’t happy, let it not be on my watch’. ‘If the children don’t have their lunch boxes, let it not be on my watch’…

The problem is, if you’re a single parent it usually is your watch. Sharing Dylan’s care gives the term more currency. I was thinking about this at new year because a breakdown in communication had meant Dylan didn’t have appropriate clothes for our planned trip. When I returned Dylan to his residential setting after the holiday I discovered this was because he is running low on trousers and needs to buy some more. I was feeling a bit grumbly about this as I settled Dylan back into his room after our trip to the seaside.  I’ll do an online order when I get home, I said, hopefully they’ll come fairly quickly.

I didn’t like that we hadn’t noticed Dylan needed to replace clothes. We need a better system for keeping track of Dylan’s things, I said.  And as I said that, something different but related came into my head.  Dylan, I said, Where’s your water bottle? What happened to your water bottle?  He looked at me, inscrutable. I’m pretty sure he knew what I was asking and what the implications were.  I thought he looked a little sad, but perhaps I imagined this. I checked Dylan’s bag and the car but there was no sign of it.  Staff must have worked hard to help Dylan build the water bottle into his routine and to look after it while he was out and about, I thought to myself. I’d been looking after Dylan for less than 24 hours and had managed to lose it. I’m so sorry, I said to the support worker. I’m afraid that was on my watch.

Later, when I looked at the photos from our trip, I could see the water bottle in the pocket of Dylan’s backpack while we were kite flying on the beach. Perhaps it had fallen out then.  Still, I telephoned the restaurant where we had eaten dinner afterwards. They hadn’t got it. Those Jack Wills things are really popular with the young folk, the manager said. Someone probably picked it up.

*

wp_20170114_003Last month I noticed that Dylan’s railcard had expired so I took it home to renew. Last week I remembered that I hadn’t done it and went to get the expired card from the ‘to do’ tray in my study. No sign of it. That’s odd. I hunted around a bit. It hadn’t fallen on the floor. I hadn’t put it in a drawer. I couldn’t remember for certain when I’d last seen it.  So much for keeping better track of Dylan’s things, I thought to myself. Now what to do? I searched though old emails for a record but drew a blank. I would have to sort this out: I had promised Dylan a train journey in the new year.

Can I have your Filofax please, Dylan? I asked him this weekend.  Dylan loves his Filofax and carries it everywhere with him.  He isn’t so interested in the daily records that we fill in (though he realises that they are important to us I think) but he’s very attached to the passes, tickets and concessions cards which he keeps there. As he gave it to me the Filofax fell open at his travel cards and to my amazement there was his rail card, neatly filed in its place. Dylan must have seen the card in my study and taken it back – keeping track of his own things, taking responsibility. Rather than just remove it again, this time I took the time to explain why. Dylan probably keeps better tabs on things than we realise.

*

As I reflected at the start of this post, I might not look after Dylan full-time but I spend a lot of time thinking about him.  This week, I’ve mostly been feeling bad about that water bottle. This is a small thing, I know, but I’ve been surprised at how much a lost water bottle has taught me about sharing Dylan’s care. So while Dylan and I were shopping for clothes yesterday I encouraged him into the shop where I had bought the original. Dylan seemed delighted and quickly picked out an identical replacement.  Hopefully I’ll be a bit better at keeping an eye on it this time, at least until Dylan has built it so firmly into his routine that he looks out for it himself.

wp_20170114_002

 

 

The photographs of Dylan flying his kite were taken in Cleethorpes on New Year’s Day

Christmas In A Cave

wp_20161219_003It’s a while since I posted an update on Dylan’s progress. Reflecting on it today I am mostly struck by how well things are going. Christmas isn’t an easy time if you are autistic but Dylan seems to have taken it in his stride this year and coped with the changes in routine which a holiday brings. I suspect that is testament to Dylan’s increasing maturity as well as to our growing understanding of what helps Dylan to manage times of challenge and stress.

We have realised the need to organise Dylan’s weekly schedule, for example, so that it always ends on the day he comes home. What this means is that Dylan’s week is not always the same as a calendar week; awkward for fitting in with staff rotas and fiddly to customise the schedule columns, but worth it to avoid the stress it causes Dylan if the week doesn’t end at home. A calendar week, after all, is a construct and utterly meaningless to Dylan; we have to keep the rhythm of time which Dylan feels.

It took a while for us to grasp what was causing Dylan anxiety about his schedule. After I realised, I thought about how frustrating it must have been for Dylan, trying to communicate to us what he wanted. His attempts to show us had involved such things as him asking us to cut the last day off his schedule. When we had done that he would often want it re-instated. We puzzled away at Dylan’s to-ings and fro-ings about the end of the week. Perhaps we haven’t completely understood what he wants but I’m fairly optimistic that we’re in the right area. Dylan has been pretty patient with us while we’ve been trying to figure this out 🙂 That’s one of the things I had in mind when I referred to his ‘increasing maturity’.

*

picture1Dylan seems to have coped with the loss of E, the key worker who settled him into his residential setting and who he had come to love. There were a few incidents in the immediate aftermath of E leaving (to take up a new post) and I was a bit concerned about Dylan. Dylan has experienced the loss of a number of key people from his life over the years, something which has caused him huge sadness and grief. “Mummy will always be here for you”.  I sometimes tell Dylan when I think he is grieving. It can’t always be true, I know, but it seems to help.

So after E left I tried to be more present for Dylan. I resumed my mid-week visits to Dylan, for example, and we went to Pizza Hut for dinner as we had when Dylan first moved to the care home. This seemed to help, perhaps through the association with a period of change which Dylan had already successfully negotiated.

I will be grateful to E for many things but one legacy in particular is her focus on equipping Dylan with strategies for self-managing his anxiety. While we cannot stop Dylan from experiencing anxiety, she explained, what we can do is help him to recognise it and adopt methods for de-escalating it. Tearing paper, for example, is something which seems to calm Dylan and he now has a ‘ripping box’ which he can be directed to when he becomes anxious. Sometimes Dylan doesn’t get to the ripping box in time and tears one of his books or his weekly scheduled instead – but as E pointed out to me, we can always print out another schedule and replace a book, if necessary.

Dylan did quite a lot of ripping in the aftermath of E leaving and I tried to reassure myself, during this time, that this was a positive behaviour and that Dylan was managing his emotions. The extent to which this represents a significant development is clear when I recall that previously Dylan would have become physically aggressive at such times.

*

untitledAs well as using methods for coping with anxiety that have been suggested to him, Dylan seems to be adopting strategies of his own. He has always been very attached to a photograph of my mum which he keeps by his bed at his residential setting and brings home at weekends. Recently, Dylan has been carrying the photograph with him on day trips as well.

Sometimes it seems to be enough for Dylan that he has the photograph of his Gran with him and she remains in his backpack during the trip. Other times, however, Dylan gets the photograph of my mum out of his backpack and places it next to him. I’m curious that these times are often in locations which Dylan probably associates with my mum. One day we went to the bookshop, for example, and Dylan placed the photograph of mum on a beanbag then took from the shelves two books which they would often read together: Handa’s Surprise and The Mousehole Cat. I liked the idea that Dylan was sharing the books with his Gran and that he was finding some comfort in this.

I think of the photograph of my mum as an ‘object of reference’ for Dylan. I could consider it inappropriate for him to take it out with him into the community, but I think it is helpful for Dylan and I prefer to let him use it as an emotional support. My guess is that it’s a response to a change in key worker; Dylan is adjusting to the loss of E by referring back to other instances of change and loss. I assume that in due course he won’t feel the need to carry the photograph with him, always.

*

christmas-eve-2016-017I miss my mum as well, of course. Supporting Dylan with his grief helps me to manage my own, especially at times when we are vulnerable, such as Christmas. Dylan carrying the photograph of his Gran around with him enables me to talk about her in a way I might not without such an object of reference for grief.  “Your Gran used to like to come here for Christmas Eve, didn’t she?” I said to Dylan as we walked around Castleton village, as we do every year, on the night before Christmas. It’s one of her traditions which I’ve kept going in the belief that continuity helps Dylan to develop a sense of his own life history and place in the world.

Castleton is famed for the caverns which lie beneath its limestone hills and on our Christmas Eve visits we always walk up to the mouth of Dylan’s favourite cave, The Devil’s Arse (or Peak Cavern, as it is also known). Dylan has a particular interest in caves; he likes the blackness and the acoustics, I think. If you have sensory issues, a cave is probably quite a comforting place to be. There is something about cave space which absorbs chaos. So a visit to Castleton, which isn’t far from where we live, is a popular outing with Dylan and we quite often go there to take a trip down a cave. Not on Christmas Eve, however, as it is closed for regular visits. Instead, a Christmas concert takes place inside the cave: a brass band, mince pies and mulled wine, song sheets and family singing. As this completely undoes the usual charm of the cave, it’s not the sort of event I would ever plan to take Dylan.

christmas-eve-2016-015The concert takes place in the early evening so when we arrive at the cave in the late afternoon the gate is barred and I manage to explain to Dylan that we can’t go in as it is closed for Christmas. When we arrived this year, however, it was to the hum and bustle of an earlier-than-usual concert about to start. The cave was lit like a ship and inside people were seated as the band tuned up. Curious, Dylan pulled on my arm. “You won’t like it Dylan”, I said. “There will be music. And babies.”  Dylan continued to pull me over to the gate. The doorman explained there were no tickets anyway: it had sold out in November and two tickets that had been returned that day had been reallocated within five minutes.  Dylan, of course, didn’t understand this. He pulled on my arm. “Let’s go, Dylan”, I said. But we were going nowhere – Dylan wanted to go in. I would just have to let things unfold, I decided, and deal with whatever happened.

christmas-eve-2016-007We were given the nod just as the concert was about to begin. This was probably helpful in that we were able to find seats in the far reaches of the cave, beyond the last row of seats. Dylan doesn’t like mince pies but he’d taken the one he was offered and now proceeded (to my amazement) to eat it. The next surprise was that Dylan didn’t cover his ears when the band started up. Another surprise when he started clapping, spontaneously, at the end of the first carol. And then, glory be if he isn’t swaying to the music, stamping his feet and flashing his best grin at me. And so we spent Christmas Eve in a cave – or at least an astonishing 50 minutes of it, leaving only just before the end, when Dylan decided he had heard enough. I was thrilled by the experience, not just for Dylan, but myself: I got to go to a carol concert this year 🙂

*

christmas-day-2016-004This was the highlight of my Christmas but there have been other things to enjoy too. Dylan and I spent Christmas Day, as ever, out in the Peak District with a picnic. This year I had chosen Stanage Edge, hankering after a high place. As Dylan’s visual programmes are produced in advance, I have to make decisions about how Dylan and I will spend our time a week before the activity. When I opted for Christmas Day on Stanage Edge, what I didn’t know was that Storm Barbara was due to make landfall and would be passing through the Peak District.

christmas-day-2016-006Our walk that morning would best be described as ‘challenging’; we inched our way along the edge, battered by high winds. At some point I became anxious that we could be blown over the top so spent most of my energy trying to draw Dylan inland through the marsh and bog I would normally steer him round. “Picnic”, Dylan asked hopefully. If it’s on the schedule, not even a storm can blow Dylan off course…

Dylan certainly extended his vocabulary this Christmas.  “Wee” (wind) he said to me repeatedly.  “Wee, wee”. “Yes Dylan”,  I replied, it’s very windy today.” As we picnicked under a sheltering rock I smiled at the thought that the storm was called Barbara. That was my mum’s name. “It’s your Gran”  I said to Dylan as the wind whipped his Santa hood up around his head – “It’s your Gran wishing you happy Christmas”.

Season’s greetings to those who celebrate

&

Happy New Year

Thanks for following Dylan’s Story in 2016

The Key

berrien-2016-047This week is the start of the academic year in England; pretty soon I will be deep in teaching. Although September no longer marks a transition point for Dylan I don’t think I will ever lose the anxiety that the end of summer brings for parents of children with disabilities. Each year I would live on my nerves through the first weeks of term, hoping desperately that all would be well.

It is three years, now, since Dylan left school. That was the hardest end of summer ever; my nerves burned for months. Happily, Dylan is settled at last and can live his life without such difficult jags of time; there are no sudden changes to the year’s rhythm, or inexplicable annual endings, in his residential setting. There is a reassuring continuity to Dylan’s life.

berrien-2016-046That’s not to say there aren’t changes; periodically something disrupts a routine or we deliberately introduce a new pattern to Dylan’s week. The last time I posted an update here, for example, I was anticipating taking a holiday without Dylan. I fretted terribly about the proposed trip, concerned that Dylan would be upset by my absence, but he was absolutely fine.

The key to this, I’m sure, was the extended timetable the care home staff made for Dylan. Instead of a weekly programme Dylan had a schedule which ran for the time I was away, ending with the day he would see me again. Dylan also had a weekly ‘overview’ schedule so that he could count the sleeps until his next visit home.  It didn’t seem to matter to Dylan that the gap between my visits was longer as long as he knew he would see me again.

*

13901449_293441187680481_5004186233514663936_nI’m really glad that I took that ‘next step‘ during the summer. I had a fantastic week in Brittany and relaxed into the different pace of time without Dylan. Some of the things that my girlfriend and I did Dylan would also have enjoyed, but I was able to linger over them in a way that hasn’t been possible in the past: a Chagall exhibition in Landerneau; a beach day at Poul-Rodou; a folk festival in Plomodiern; cycling on the Isle de Batz. I returned from holiday this year refreshed instead of exhausted.

I missed Dylan of course. I kept his timetable close by me and checked it each day to see what he was doing. Initially I talked about him a lot. In fact on the drive down to Portsmouth for the ferry I must have come close to driving my friend away with my talk of Dylan. That journey was terrible for me. I was in such a state of anxiety about leaving Dylan I had made myself ill: my stomach was in knots and I had a dreadful sense of foreboding. My friend let me talk or not as I needed. Having her to support and encourage me was probably key to my being able to take the step at all.

wp_20160821_006I’m not sure how patient she would have been with me had I continued to talk so much about Dylan during the week. At some point in the Channel , however, I felt the knots in my stomach loosen and my anxiety lift. The sun was shining. We were on deck. I could sit and read Zola and drink tea, as I had dreamed of doing. And so the week continued; while we were in France I made only one phone call to Dylan’s care home and sent just one email.

The email was to ask staff what size Dylan’s head was.  The last time he and I were in Brittany he bought a Breton cap which he has worn constantly since and I wanted to get a new one for him, as a gift. He looked a bit puzzled when I gave it to him on my arrival home, as he did about the Breton biscuits which had mysteriously appeared in the house.  I think he pieced things together when he saw my photos from the holiday, however. Usually Dylan looks through photos from our trips with great interest but I’d describe his interest in my pictures from Brittany as ‘passing’. So mummy had been away without him.  He ate the biscuits. He put on his cap…

*

berrien-2016-025Dylan’s care home manager told me she thought parents should take a holiday, even if it causes separation anxiety. I understand that now.  It is important for parents of disabled children and adults to have a complete break, not just from caring but from thinking about themselves as care-givers.  And, I remind myself, learning how to be apart from your adult child is part of learning how to be a parent. In this respect the experience of a parent of a disabled adult is not dissimilar to the experience of any parent;  I was also anxious about being far from my daughter when she lived in France.

There is  something about being away from a disabled child or adult which can provoke particular anxiety, however.  Their vulnerability and dependence on others means you need to have complete confidence in the people caring for your son or daughter.  I feel lucky that Dylan is finally living somewhere I can put my trust in others.  This week I’ve been thinking a lot about how we make such decisions.  How do we figure out levels of confidence in someone? Is there a science to it? Do ticks on a checklist really reassure us?  Parents of children with disabilities spend their lives making difficult decisions about care provision,  but how we make them – well, that’s something I’m not absolutely certain of.

As well as the checklist there is surely something magical to this? Call it intuition, if you will. Something in your guts, perhaps. An unknotting.  Sense of lightness. Je ne sais quoi.  I’ve written about this before; how some of the critical decisions I’ve made about Dylan’s care have been based on something entirely irrational magical. And this week it struck me that I’ve been relying on such seventh sense since Dylan was born. Because, as a single working parent, I had to go back to work when Dylan was only a few weeks old so needed to find someone to look after him. I was pretty clueless about the berrien-2016-088 process; I didn’t know how to care for babies and certainly had no system for figuring out how to choose a childminder. But someone very special came into our lives and I was able to get back to work – which some days meant working a distance from Dylan – with the complete confidence which comes from knowing you trust someone else to care for your child.

Blogs can be wonderful can’t they? I was so thrilled to find a message on mine last week from Dylan’s first childminder 🙂 I moved away from the area quite soon after Dylan was born but Tan has remained a precious memory. She was a key person, perhaps, because she made my first difficult separation from Dylan not just possible but positive. I think that is probably also an accurate description of my experience this summer.

*

berrien-2016-153The thing about key people is that they tend to be transitory:  children outgrow childminders;  parents move away; friends move on.  I can add something else now:  care workers get promoted.  Dylan’s key worker will be moving onto a new role next month so one of the things we will be discussing at his annual review this week is her replacement. E has been a fantastic key worker; she has developed a great relationship  with Dylan and has been instrumental in developing critical aspects of his care, particularly around communication and behaviour support. Although I was sad to hear Dylan would be losing her as his key worker, I can’t say I was surprised. Key people are special people and if they are young,  gifted and ambitious they inevitably get promoted 🙂   The only question in my mind had been when and to where she would move.

Happily, the promotion is within the organisation so Dylan will still have occasional contact with E. I am telling myself that Dylan was lucky to have her as his key worker during his first year in a residential home; E has helped him to settle in and created a system of care around Dylan which should ensure continuity. As the message from Dylan’s first childminder reminds me, we keep people in our hearts and minds long after they have moved on: I’m sure Dylan will not forget.

One of the many things I love about Dylan is his capacity to form deep  relationships.  He has his own magical system for deciding whether to trust someone; I’ve seen Dylan reject some people entirely while embracing others with utter loyalty and commitment.  The transparency of Dylan’s affections means I am confident his ‘voice’ will be heard in the process of selecting a new key worker.

berrien-2016-104There are, of course, no promotion opportunities for parents; it is a role for life, with no possibility of moves up, down or sideways.  While that means there is no escaping the temporary anxiety of being far from your child, from time to time, it also means you are their continuity; the birth rock on which their whole life pivots. So although I don’t care for Dylan on a daily basis now, and am no longer the only person who knows how to do this, I am the one with the long view, holding his narrative together. That, I tell myself, is a privileged position to be in.

*

A final key is for my daughter. She will turn 21 this week, a birthday we used to refer to as the  ‘key to the door’.  So this September I’m making wishes for both my children to walk  happily through their newly-opening doors …

 

Except for the photo of Dylan (looking uncertain in his Breton cap) the photographs were taken in Brittany in August.