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 ūüôā¬† 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 Рwho hates noise and has very low tolerance of others Рthis must be a challenging and sometimes stressful environment.  The mix of residents in a care home is not something any individual has control over Рthey are a cluster rather than a group Рand 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 ūüôā 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.

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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.

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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.

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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.

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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.

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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 ūüôā That’s one of the things I had in mind when I referred to his ‘increasing maturity’.

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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 ūüôā

*

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 ūüôā 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 ūüôā ¬† 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.

Small Steps Back, Big Leaps Forward

Picture1When I looked back in my diary last weekend I discovered it was exactly a year since Dylan went for his first night’s respite at the house where he now lives. Although he had spent occasional nights there during his time at a nearby National Autistic Society school, Dylan hadn’t had any contact with the setting since his transition to adult services. An escalation in ‘challenging behaviour’ after Dylan left school meant I had been unable to find a respite provider willing to accommodate him.¬† As Dylan had not therefore spent any time away from home for months, ¬†it was with a mix of relief and trepidation that I dropped him off for an overnight stay a year ago.

I had spent over a year trying to identify a specialist provider able to support Dylan and after months of frustration and disappointment it seemed I had finally found the perfect place. ¬†This felt like the last chance saloon though.¬† What if something went wrong and the key to the golden gate was withdrawn? ¬†Reading last year’s diary entry reminded me of just how anxious I had been. I seem to have had two main concerns: whether staff would be able to keep themselves as well as Dylan safe if there was an incident and the potential ¬†impact of the trial on Dylan’s proposed residential place.

If it is challenging and they see the full extent of D’s behaviours there could be a high risk situation… someone could get hurt and they could say¬† – I’m so sorry but we can’t possibly accommodate Dylan after all – we didn’t realise the extent of the CB.¬† So I need him to be good (but not too good). Well: breathe now, breathe. Try to relax. This is what I’ve been desperate for and needing. I have until tomorrow. Only tomorrow!!

Needless to say, that first overnight stay, and subsequent visits, went fine. There were some incidents but nothing the staff couldn’t handle or to cause concern. Dylan was just the sort of young man, the manager told me, their provision was aimed at. So he was¬† offered a place at the house and, as I commented to staff when I collected him last Saturday, his progress has been remarkable.¬† Dylan has settled well; he has developed some great relationships and seems to thoroughly enjoy his programme of activities. Although there are still incidents from time to time, Dylan’s anxiety levels are significantly reduced thanks to the specialist support he receives.

Dylan is doing so well in fact that he went away with staff on holiday at the beginning of this week. ‘I can hardly believe’, I said as I handed over Dylan’s trundle case at the weekend, ‘that it is only a year since Dylan’s first sleepover’.¬† If someone had told me, then, that just 12 months later Dylan would be doing this I would perhaps have breathed more easily. As Dylan hasn’t been on holiday without me before this is a significant step for him. It represents a pretty big leap for me too though. At the weekend I realised I had left Dylan’s suitcase for staff to pack without feeling the need to also provide a list of instructions and details of what Dylan should pack. This ¬†didn’t so much as cross my mind: ¬†I trust the staff to care for Dylan and accept I am no longer the only one who knows what he needs.

*

89a02f168afcaab595550196bc3871bbThe Log Cabin on the coast which Dylan’s care provider have rented is being shared across the week by the residents at the home. The young people take turns to have a couple of days away, one by themselves and one shared with another resident; Dylan was first to go on Monday morning and he was joined¬† the next day by another young man who took Dylan’s place in the cabin on Tuesday night.¬† Apparently Dylan had a lovely time and thoroughly enjoyed himself.

I say ‘apparently’ because I am, of course, dependent on reports from others. I did glimpse Dylan, briefly, on his return from the short break as ‘Facetime with mum’ was on his programme that evening. Facetime, however, hasn’t been very popular with Dylan recently.¬† The days of kissing the screen appear to be over.¬† In the last couple of weeks Dylan has clutched his ears, closed his eyes, moaned softly and walked out of view during our calls.¬† ‘We might want to step back a bit with Facetime’, I suggested to the activities coordinator: ‘Dylan doesn’t seem very comfortable’.

Parents and professionals will perhaps recognise this pattern of engagement and disengagement; Dylan quite often appears OK with something initially but then decides it’s not for him after all (and vice versa). This delayed reaction is typical for Dylan who, like many autistic children and adults, needs extra processing time for new experiences. Consequently, it can take a while for Dylan’s authentic response to a situation or activity to become clear. I should know this by now; my rejoicing about Facetime was almost certainly premature.

51b5dd798d9adbf39a1b93ded520d811So when I got an email last week asking whether I thought Dylan would like to join an early evening running group, and if so would I mind rearranging our Facetime session, I jumped at the suggestion.  Physical exercise is one of the best ways of involving Dylan in community activities and I loved the idea he could take part in a fun run with staff from the home and members of the public. That would be great, I replied, and no problem at all about the Facetime session.

When staff tried to do a ‘Programme Change’ , however, Dylan wasn’t happy. He pointed repeatedly to the Facetime icon, insisting it be reinstated. I was surprised by this, having convinced myself he wasn’t enjoying the sessions. Maybe in his own way he looked forward to them? Had I been too quick to make assumptions? How could I be sure Dylan’s behaviour meant he didn’t enjoy Facetime? So we decided to leave Dylan’s programme as it was and schedule the running to start this week instead. Come the Facetime session, however, it was a struggle to stay positive; you would never have guessed, from Dylan’s reaction, that he wanted it on his schedule.

c15611269b52da129a0117ce6b4065ddAs Facetime is fundamentally about communication maybe it is no surprise that Dylan should feel anxious. Although it is visual, Facetime still requires direct interaction in that it demands a face and assumes speech.¬† For Dylan, for whom eye contact and voices provoke anxiety, this is not ideal.¬† During one session, realising that Dylan was uncomfortable, I fell silent and started making simple actions: putting my tongue out, touching my nose, pulling a funny face. After a while I had Dylan’s attention.¬† Gradually he started to copy some of my actions. I heard Dylan’s support worker laughing at us (in a nice way). It felt a bit weird but it was probably the most relaxed I’ve seen Dylan on Facetime recently.

So I haven’t wanted to give up on¬† Facetime too quickly in case it is something we only need to tweak. Maybe we are scheduling it at an irritating time of day when Dylan is wanting to do something else? Or perhaps we need to move it to another area of the home where Dylan is less distracted? Maybe Dylan and I will develop a silent Facetime language.¬†I would be sorry to lose Facetime as I find it more comfortable than the telephone. At the moment, therefore, ¬†I am asking whoever is supporting Dylan to chat to me, rather than try to involve Dylan – perhaps watching from the sidelines will be enabling for Dylan. I’m not sure what will happen next.¬† Perhaps we’ll knock it on the head for a while. It feels like a step back, but only a small one.¬† And who knows – the running group could be a big stride forward.

*

‘I have to accept that there will be setbacks’, I told myself on Sunday as I sat alone in a cafe over a bowl of soup, wondering what to do with my unexpected free time.¬† The battery on my phone had inconveniently died so I couldn’t phone a friend to ask if I could visit or we could meet.¬† I tried to stay positive while I re-thought the rest of my day. Because, for the first time in the year since Dylan had moved to a residential home, which only the previous morning I had been rejoicing, I had telephoned staff to ask if I could return him earlier than scheduled.

9235c2ffd9004f1f6c76b96e9579c75bThere had been an incident and I had decided it probably best to abandon our planned activity.¬† So I had dropped Dylan off at the home before lunch on Sunday, rather than at the end of the day, and was pondering my next move from a nearby cafe. I’d probably been undone by my own hubris that morning, I reflected. I had been too relaxed.¬† I had taken my eye off the ball. I had forgotten that with Dylan I must be vigilant and prepared for the unexpected. It was good to be reminded of this, I told myself – ¬†and lucky that it had been in such a safe environment.

I had taken Dylan to an Autism-Friendly screening of Angry Birds at an out of town multi-screen entertainment centre which Dylan has been to numerous times. ¬†Dylan doesn’t need to go to inclusive screenings any more as he is a seasoned cinema goer and understands the routine. I like to support AF initiatives, however, and as the film was at a convenient time and location I had suggested to Dylan that we go before lunch out and an afternoon walk.

I had a relaxed swagger about me as I helped Dylan to use his CEA card to buy his ticket and queue for his salty popcorn and water. I bought a cup of coffee. I was aware of parents of young autistic children doing what I had needed to do with Dylan years ago: encouraging them into line; helping them to wait and to choose appropriately; supporting them through terrors and tears and mini meltdowns; picking up and carrying or patiently waiting. I probably let myself feel glad that my young man was quietly waiting to be served, behaving beautifully.

cd4c980c1b4e1978ed7fc085e53e708aAnd then it kicked off.¬† The film wasn’t in the cinema Dylan wanted it to be in (up the escalator). He became an Angry Bird. I saw, in the split second before Dylan did it, what was about to happen: backpack off, frog-jump as high as he could manage, popcorn falling everywhere, like snow, and then Dylan squirming in it, on the floor, yelling in anger.¬† The staff had clearly had autism awareness training and were prepared; they appeared with brushes and pans and a ‘hazard’ sign, asked me whether it had been sweet or salty (for ¬†a replacement) and what they could best do to support me.

I said that Dylan could sweep it up himself – that it was important that he did – and that I wasn’t sure I wanted him to have replacement popcorn.¬† So, to the staff’s surprise, I got Dylan to help them clear up. Was there another way into the cinema I wondered? Could we go up the escalator and enter through a back door? But there wasn’t. I wasn’t convinced that I was going to get Dylan into the cinema but thought I would try again and agreed he could have more popcorn. When I told Dylan again, however, that the film was on the ground floor, he prepared to repeat the popcorn party trick. At the very¬† moment he bent his knees to propel himself into the air I slipped the carton out of his fingers. ‘I think we’ll leave’, I said to the member of staff, as ¬†I escorted Dylan from the cinema, shouting and waving his arms, still pointing to the escalator.

Should I have let him go upstairs? Maybe. Perhaps he only wanted to ride it and would have come back downstairs for the film. I doubt it though. I suspect more likely is that he had a particular auditorium¬† in mind. I decided I couldn’t take the risk of letting Dylan head upstairs to find myself with a more difficult situation to manage on the mezzanine. Leaving the cinema, however, had made me feel sad; ¬†going to a film together is something we have done for years and a shared activity I have loved. I couldn’t guarantee a film would be showing in a particular auditorium for Dylan. ¬†Were our cinema trips in jeopardy? Was this something else to lose?

WP_20160607_005When I dropped Dylan off at his residential home a member of staff told me I had done exactly as they would by encouraging Dylan to sweep up the mess and then changing the activity. And, she suggested, I might not have to give up cinema trips altogether, just avoid the multi-screen¬† for a while. Still, I sat staring into my soup, feeling disappointed not just about the day but the¬† loss of future days. How could I possibly take Dylan to the cinema again, I wondered? It hadn’t occurred to me before that a trip to the cinema might be as much about the auditorium and environment as the film itself for Dylan. I searched through all my cinema memories, asking myself how many times we had been upstairs and how many downstairs. Which films had we watched in which auditorium? I knew Dylan usually headed for particular seats. Now I realised that this varied by auditorium; in one cinema it is row F on the far right, in another it is row A on the far left and in another it is the very back row, far left. Perhaps that morning Dylan had wanted to sit on a particular seat rather than in a particular auditorium?

So I sat turning things over, trying to figure them out. But then I remembered my old diary entry. Instead of staring into my soup, I told myself, I should be enjoying the time I had to myself. A year ago I would have done anything for a bit of space on a Sunday. In the scale of things this was a small step back, after all, not a significant loss. ¬†I had a book of poems in my bag, waiting to be read. And then I would go and look for that laburnum tree I had promised myself…

*

The photographs of Dylan were taken by staff during his short break this week. I am really enjoying the laburnum tree which I planted outside my back door.

 

Kissing The Screen

speed cameraSo last week Dylan had Facetime scheduled on his programme on Tuesday and Thursday after his evening meal.¬† The icon looked like one of those warning signs for road traffic cameras I thought to myself.¬† I doubted I would be up to speed: I wasn’t even sure I’d created the accounts correctly. If something unexpected happened would I be able to sort it, I wondered?¬† Or would techno-anxiety get the better of me?

Even though the Facetime symbol didn’t mean anything to Dylan I was conscious that if it didn’t work he might be upset at not completing an activity that was on his programme. It was also likely that Dylan would be less than interested if we attempted to re-schedule (in the future) an activity that hadn’t impressed him the first time. No pressure then. It was with some nervousness I tapped the Facetime icon for the first time last Tuesday evening…

*

assistiveware.com

Proloquo2go (assistiveware.com)

I had spent the previous Sunday restoring both ipads (Dylan’s old one and the new ipad mini) to their factory settings. I had decided that I wasn’t happy with Dylan’s favourite films being ‘in the cloud’ on the mini as he needs to access them without an internet connection (when travelling for example). I was also uncomfortable with the way the ipads were linked, allowing my personal data to be accessed (hypothetically) by Dylan’s support staff.

In the process of setting the ipads free of each other¬† Ariel’s Beginnings disappeared and some photographs were lost. Other than that, however, the restore was a success and I was able to load Dylan’s resources onto the mini. This clearing of the digital decks also encouraged me to think about how Dylan might use his new ipad in the future. I’ve been wanting to get Dylan a copy of the well-regarded communication software Proloquo2go for a while and, with my newfound confidence, last weekend felt as good a time as any. On a roll, I also subscribed Dylan to Disney Life, an app which allows him to watch any movie he wants as well as offering access to songs, books and games. While Dylan will only be able to use this with an internet connection it is potentially a good use of his pocket money, providing Dylan with on- as well as off-line access to new and familiar resources.

*

WP_20160517_006As Dylan didn’t understand what the Facetime symbol on his programme meant he didn’t have the fear I had but nor did he know what to expect. For our first session Dylan was in the corridor outside his room as if unsure where to locate this new activity on his mental map. ¬†I wasn’t surprised – even with some awareness of what would happen I’d wondered where in the house to sit for our Facetime call.

Dylan was clutching his ears and moaning softly, something he does when encountering experiences for which he has no coordinates. I decided to wander around the house, hoping this would help Dylan see we were in real time. ¬†Look Dylan, it’s raining in the garden.¬† This is what I’m going to cook tonight. The day bed arrived today – let me show you – here I am, walking up the stairs. ¬†As I moved around the house, visiting various rooms, I could see Dylan peeking at the camera from time to time. When I got to the attic (where Dylan watches his old VHS videos when he comes to stay) he lifted his head and looked straight at me.¬† Good:¬† I had caught his interest ūüôā

*

facetimeiconDylan finds the telephone distressing and computer activities can make him anxious if they involve audio. I knew, therefore, that I had to stay open to the possibility that Facetime might not work for him. Although Dylan’s glances at the camera during the first session were encouraging it was hard to know if he was comfortable; Dylan needs time to process new experiences and I didn’t want to make assumptions. Perhaps, I suggested to the staff supporting Dylan, I could have a conversation with them while Dylan watched?

This proved really useful as through it I discovered that Facetime is a great way to chat to staff even if Dylan doesn’t join in. I found it far richer than my daily telephone calls as I had so much more context information and therefore a better understanding of how Dylan was.¬† While I chatted to a member of staff, for example, I could hear Dylan in the background. Because I know Dylan’s vocalisations so well this gave me valuable information about how he was feeling and when to finish the call. Dylan kept drifting in and out of view, drawn by my voice and image, so as well as hearing him I was visually reassured that he was appropriately dressed and (apart from the ear clutching) at ease physically. This information was so much more powerful than any phone call.

When I waved goodbye to Dylan and tapped the icon closed I felt such relief and delight: it was like magic, almost a miracle. How could it be that I could see and talk to Dylan so simply, at the swipe of an icon? I walked around the house smiling:¬† even if Dylan decided he wasn’t interested in Facetime, I thought to myself, I could use it to chat to staff.

*

WP_20160517_004Dylan had a second Facetime session scheduled¬† for Thursday. After our first session I had emailed staff to say that I thought it had gone well but I would understand if Dylan didn’t want to do it again. I then tried to be as good as my word by not looking forward to our Thursday evening arrangement too much in case it didn’t happen.

Perhaps that’s why, this time, I signed in rather casually at the appointed time rather than ten minutes early, as I had before. Imagine, then,¬† my excitement when I found a message from Dylan to say he was waiting for me to do Facetime ūüôā ¬† This time Dylan was sitting downstairs in one of the resident lounges with E, his key worker.¬† I chatted with E about Dylan’s day and held up some things to show Dylan. Dylan seemed very relaxed next to E on the sofa and looked straight at the camera for a full 15 Facetime minutes. This is great, isn’t it? I said to them.

As I made to wrap up the session, aware that Dylan was getting itchy feet, I waved my hand and blew a kiss. Bye bye, I said, lovely to see you. See you on Saturday.  Dylan looked at me for a moment then suddenly all I could see were his features looming, getting closer Рthe top of his head first, as he stooped down towards me, then his eyes, nose and finally his mouth, kissing the screen.