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.

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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.

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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

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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

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Happy New Year

Thanks for following Dylan’s Story in 2016

Kicking And Screaming To The Moon

untitledIt’s not Dylan who is kicking and screaming, this time, but me:¬† all the way into the 21st century. As you might have gathered I am not keen on the digital world. ¬†While colleagues book out laptops for seminars I am still using the laminator and asking the technician for string and stickle bricks.¬† ‘When you answer the item on your module evaluation questionnaire about my use of technology’, I tell students, ‘please remember that twisting cotton into a ball of twine is technology – it’s just been around a bit longer’.

People who know me express surprise that I have a blog: ‘It’s got pictures in it as well’, someone said to me the other day. But if I can see a purpose to technology I will apply myself doggedly until I have figured it out;¬†Living With Autism¬†arose¬†from a determination to share my frustration at Dylan’s poor experience of¬†transition to adult services rather than the desire to blog.

Purpose. Function. Appropriateness. These are terms I use with students when we discuss the use of technology to support learning in schools. ¬†I apply the same principles to my own use, I suppose, in that I take no pleasure from technology in itself but only in the affordances it offers.¬† I resist adopting gadgets which I can’t see a role for in my life or from which I think I will derive no benefit. Smart TV, smarter phone, satellite and cable, iPad, iPod, dongles of this and bundles of the other – these might represent wonderful opportunities for others but, I have repeatedly claimed, they are not for me.

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001I might have a heart of string and a head that thinks in pen and ink but there’s nothing like parenting to challenge me – and being the peripatetic mother of an autistic adult, I am discovering, can lead to some unexpected places.

Last week, for example, I bought an iPad. Nothing extraordinary about that but for my steadfast resistance, over the years, to the idea of a tablet computer. So when I announced that I was going to buy one in my lunch break my colleague’s eye-rings widened in disbelief. ‘Have you thought about a mini?’ she asked once she realised I was serious. It would be wasted on me, I told her.

I only wanted an iPad so I could keep in touch with Dylan; as I have noted in previous posts I have found it difficult not to have daily contact since he moved to residential care. Because Dylan is non-verbal I am reliant on staff for information about him during the week. The telephone, however, is not a mode of communication I’m comfortable with and the evening phone call is often a source of anxiety. So when a member of staff mentioned, recently, that some non-speaking residents keep in touch with their family through Facetime my interest was piqued; I had finally been offered a reason for technology I couldn’t resist.

Although I have never owned an iPad myself I bought one for Dylan when he left school in 2013. He has used it mostly for music and film but recently has been developing new skills during ‘iPad time’ which is scheduled on his programme each week. Apparently this has been going well, with Dylan showing an interest in playing games with staff.¬† It would be great if Dylan could add Facetime to his use of the iPad I told my colleague. ‘You might find your use increases too’, she said as I headed out of the office: ‘If I were you I’d definitely think about getting yourself a mini’.

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WP_20160424_002I did buy one, though not for me. The extra capacity and portability would be ideal for Dylan I decided: I could have his old iPad. So yesterday I rigged up a maybe-system for transferring Dylan’s content to the new iPad mini. My main worry was accidentally deleting the copy of Ariel’s Beginnings I had gone to such lengths to download at Easter. I was also unsure when and how to introduce the idea of a new tablet to Dylan; in the back of my head was the possibility I wouldn’t manage the transfer and would have to have the mini myself instead. So I was hedging my bets a bit; not really telling Dylan what I was doing.

Sunday morning. Dylan hovering. I had promised him a ‘picnic and an explore’ up the next stretch of a river bank we had discovered the previous weekend. I watched with¬† a sinking feeling as the predicted time for the sync extended itself: 15, 17, 18, 20 minutes the dialog box read.¬† Dylan was pointing impatiently to the screen. He wanted me to do something but I wasn’t sure what. He gestured to the mouse. To the scroll bar. To the little cross in the corner. ‘We have to wait for it’, I said: ‘Let’s leave it and go downstairs’.

One the final day of our recent Easter holiday Dylan had tried to use his schedule to tell me what he wanted rather than what the schedule told him we were doing. Now Dylan took this a step further: he fetched some brochures and showed me a picture of a hotel bed. Then he pointed to the programme for his week which I had shared with him earlier that morning. ‘Moon’, he said.¬† He pointed at my computer again and pushed the mouse toward me. ‘Moon’, he repeated. ¬†The dialog box read 5 minutes. This would be five long minutes if we stayed where we were, I thought to myself.¬† Dylan looked at me and pointed at his programme: ‘Moon bed’. Ah. So that was it!

Dylan had remembered a conversation from the previous week when I promised to take him to a Premier Inn. He’s interested in this particular hotel chain because of the moon logo; every time we drive past one of their hotels Dylan cranes his neck and tells me ‘moon’ or ‘bed’.¬† Our recent holiday, I assume, has triggered Dylan’s memory of overnight stays in the past and so last week I promised we could do this again.¬† ‘Soon’, I had said. So when the iPad had finished its sync I decided to search for a moon hotel. It was like magic, I thought to myself as I checked the content, how everything seemed to have restored itself. ‘Would you like to take this special iPad with you to the moon Dylan?’ I said.

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Ears Are Really Useful Things

August 2014 046This is not the post I had intended to make this week but, as is often the case, something happened. Ears: I’ve mentioned these before as Dylan has a habit of trying to remove them (other people’s not his own) when he is anxious. I hadn’t realised until this week, however, how useful ears can be.

Dylan is strategic about ear attacks. He wraps his arm around the back of my head to prevent me from moving it then digs his nails into my ear from behind. This gives him purchase on it, allowing him to twist and pull as if to wrench the ear from my head. Quite often, the tip of my ear gets caught in the process. I try to keep Dylan’s fingernails short given this behaviour but even when just cut they are scratchy and often break an ear’s thin skin. My left ear usually comes off worse and has been infected a couple of times since the behaviour emerged a year ago.

wet leaf fall 007I cannot begin to describe how painful this is. There is something very delicate about the back of the ear where the fleshy part meets the skull. I try to keep my humour by calling myself Van Barrett and enjoying the opportunity the ear attacks afford for being creative with a scarf (bandage-style around my head). Sometimes the behaviour disappears for a while. Recently, for example, I have felt brave enough to wear earrings again and to not bother with a scarf. A couple of nights ago, however, I sustained a bad attack. Recording it in Dylan’s log before I went to bed, I noted it had been nearly a month since the previous incident. I have no idea why Dylan pulls ears but am increasingly of the view that there is no single trigger. I continue to think sugar may be implicated in this and I know that Dylan had some ‘banned’ items earlier in the week. I’m also persuaded, however, that the behaviour is a response to anxiety which, for Dylan, can have multiple causes.

This week’s incident happened at 9pm on Friday night. Dylan was in his room watching Thomas the Tank Engine and I was downstairs almost dosing through the Master Chef final. Suddenly things kicked off and the next hour was trauma and distress. When Dylan calmed, eventually, he wanted me to hold him tightly, putting pressure on his ears while he lay on the sofa. Once again I wondered whether his attacks on people’s ears are because his own are hurting. Dylan won’t let the GP near them to look but I made a mental note to myself to raise this, again, when Dylan sees the GP for his Cardiff Health Check in a couple of weeks.

Master Chef was still playing to itself. Dylan doesn’t usually watch TV but he is interested in food and the programme seemed to take his attention and soothe him. I needed to put TCP on my ears and arms but because of the smell of it I waited until I’d calmed Dylan enough to get him into his bath and bed. I could hear him shouting – not in a distressed way, but urgently and with a need – for long hours afterwards.

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IMG_0029 (2)In some ways I wasn’t surprised by the incident. At last, I thought to myself, here it comes: the reaction. For the last two weeks Dylan has been transitioning into the residential home where he is to live. The transition plan is gentle but has still involved Dylan being away from home overnight more than he is used to. Dylan’s time has been divided between his day centre and residential home and as staff from both settings have joined up, people have appeared out of context. On days when Dylan has been at the residential setting, his usual routine has been interrupted. However much care you take, and whatever support you put in place, this is an unsettling time.

And yet so far Dylan has been calm. Everyone has commented on how well Dylan is coping. Alert and happy, he seems to be taking the changes and new experiences in his stride. Already he has achieved things I wouldn’t have contemplated: working in the community shop run by the residential home, for example, and riding solo on the TransPennine trail. When I was told that Dylan had ridden a trike I was alarmed; but Dylan always went on the back of a tandem when we cycled, I said. He doesn’t know how to steer and brake, I explained. The manager sent me this photograph in response: what more reassurance could I need than that smile? But even with Dylan’s achievements there will be anxiety and perhaps the incident this weekend was a sign of this.

books-etc-002Speaking of signs, these may have something to do with the ear attack. Signs (and symbols even more so) are important to Dylan. One of the things I did last year, at the height of Dylan’s anxiety, was to set up a weekly board at home. Although he had managed without one previously I thought it might help Dylan make sense of life which, at that point, followed a complex pattern. It was probably one of the best practical things I’ve done for Dylan. Since then we have established a bedtime routine of talking through what will happen the next day using the symbols. When Dylan removes the next day’s symbols from his board, it is a sign that he has understood the shape of tomorrow. When Dylan started attending his day centre full time and had clearer routines, he was able to put the symbols for the week on the board himself on Sunday evenings. This not only helped Dylan make sense of his week, it created a sense of participation and ownership.

July 15 transition 003Because of their importance in Dylan’s life I encouraged Dylan to take his symbols when he went to his new home for the first time a couple of weeks ago. That week Dylan was travelling between settings. Although he is usually very careful with his things, somehow the symbols went missing. I have hunted through pockets and bags and asked at Dylan’s day centre and residential home but they appear to have vanished completely. As well as symbols and pictures of activities I wasn’t sure Dylan recognised the symbol for, there were laminated photos of key people and places in Dylan’s life. Where, I wondered, was my photograph now? At least I will be smiling, still, I told myself.

While I’ve been trying to locate Dylan’s lost symbols he has been getting quietly agitated. ‘Lost it’ he had said to me earlier in the evening on the night of the ear attack. Standing in front of his empty board he drew circles in the air with his upturned palms (the makaton sign for ‘where’). ‘Lost it’. I made a note to myself: get some new symbols for Dylan. I can’t do this easily myself as I don’t have the necessary software. It’s expensive and parents tend to rely on schools and care settings to produce and laminate such resources. Actually, this has always been frustrating and unsatisfactory and if I had our time again I would probably invest in a widgets package, a photocopier, a guillotine and a laminating machine for the home (in fact I might do that yet).

Interestingly Dylan has added 'skating' on Friday (his usual routine) and some day of the week symbols (not correct order but a good attempt).

Dylan has added ‘skating’ on Friday (his usual activity) and some day symbols (not in the correct order but a good attempt).

After the ear incident I spent a restless night. There was a chance, I decided, that Dylan’s distress was linked to anxiety about the lost symbols as much as to transition itself. So the next morning I made some pictures I thought Dylan might accept as an interim measure: replacement photos and some pictures-for-symbols as well as internet-sourced photos of activities on his programme for the week ahead. The first sign that Dylan was stirring that morning was his voice up the stairs to the attic where I was cutting and sticking: ‘Lost it. Lost it.’ I showed him the pictures I had made. I thought I detected some tension leave Dylan’s body. I fastened the pictures to his board and talked him through his week. I saw him smile for Castle on Monday and Seaside on Friday. Perhaps, I told myself, this is all that was needed.

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When I drove Dylan back to the care home that evening he announced ‘lost it’ as we drove up the drive. Once in the home Dylan took my hand and led me (and a care worker) confidently to the office, saying ‘symbol’. He clearly knew what he wanted and where they were kept. The care worker fetched a box of rebus and Dylan sat contentedly going through the symbols, picking out familiar ones and finding duplicates of some he had lost. I loved the way Dylan pored over the symbols, running them through his hands and pouncing on the ones he liked. It was, I thought to myself, the way I might browse a dictionary or thesaurus.

When I left him later Dylan still seemed a little troubled that he couldn’t find his lost symbols but appeared much happier. The care home are in the process of making Dylan a communication board and we showed this to Dylan, telling him it would be ready very soon. I’m not so naive as to think it will eliminate Dylan’s anxiety enough to stop the ear tearing; if this were the case it wouldn’t have been happening at home. However, not having symbols when you are going through a transition period must be awful. I would hate it if someone took my words away from me at such a time. So I’ve vowed not to leave Dylan without his symbols again, however briefly; I need to set up a portable as well as a fixed system so there is no risk of Dylan losing his only set.

I have a lingering anxiety though. What if Dylan isn’t referring to the symbols when he says ‘lost it’ but rather to what they represent? Might he be trying to communicate to me that he is anxious that he is losing his home and his mooey? What if he is telling me that he’s anxious about losing his day centre? The latter is, of course, the case: he is going to lose it. I have been wondering when and how and what to tell Dylan about the changes. Reluctant to trigger anxiety in him and create difficulties during transition, I have avoided telling Dylan what will happen beyond the day and week we are living. But if Dylan is using the term ‘lost it’ to express the loss of something more abstract than a two inch symbol, perhaps it is time for me to be brave too. On my list of things to do: produce that social story I’ve been writing for him in my head.

So although it was challenging Friday night’s ear attack led me to some useful learning. Firstly, I need to try again to get Dylan’s inner ear examined. Secondly, I learned something about communication: that Dylan’s symbols are important to him at a fundamental level and that he may actually be processing experience at a more sophisticated level than I realise. I need to sort out visual communication systems for Dylan as a matter or priority. But the incident was also useful in alerting WP_20150508_16_19_08_Prome to something entirely incidental. Recently I have been irritated by my spectacles which have felt increasingly uncomfortable. Twice I have visited my optician to complain that they are badly fitted and require adjustment. Both times the receptionists have politely fiddled with them for me in an effort to oblige. Last week when I complained again, however, the receptionist told me that she really could not see what the problem was: they were correctly fitted. Perhaps, she suggested, I just had to get used to them?

Bathing my ears in TCP this weekend I realised why my spectacles have felt so uncomfortable; the backs of my ears are chronically sore from the repeated attacks on them. The arms of my glasses, where they hook over my ears, must be pressing so as to create discomfort. I’m not sure what I can do about this but the realisation will, at least, stop me harassing the optician. And now I know that ears are really useful things: the thought that I need them for seeing as well as for hearing amuses me. Contact lenses would be a solution I suppose if I could bear the thought. I almost prefer the idea of a pince-nez or lorgnette. They would probably style well with a head scarf.

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The piece I had planned to write (which I referred to in my previous post) is coming soon…

Autism And Transitions: supporting Dylan through change and loss

transition 002The Rule of Three

When I was training to be an English teacher my supervisor gave me a piece of advice:¬† focus on your classroom transitions he told me. Children and adolescents, the professor explained, don’t find it easy to move from one activity to another; they tend to get settled with one thing and then resist moving onto something else. Transitions within lessons, I was warned, are a flash point for disruption and managing them is key to an effective learning environment.

Prepare your class, I was told, by warning the pupils five minutes before that you intend to move them onto another activity. At the point of transition, name the activity which is ending and the one which is about to begin.  Five minutes later, reinforce the transition that has taken place by reminding pupils that one activity has ended and another has begun.

Years after I was given this advice I still draw on it even though I teach university students rather than school pupils now; my experience has confirmed its good sense and contribution to learning in all educational contexts. If mainstream students need this type of guidance, it’s no surprise that autistic children and adults require support with transitions.

The Rule of Half As Long Again

Dylan leaves school 014Many years ago, when I was grieving the loss of a lover, a girlfriend told me that it takes half as long again to get over a relationship. So if you’ve been in a relationship which lasted three years, for example, it’s likely to take you 18 months to fully recover.¬† Over the years I’ve applied this rule again and again and it has proved uncannily accurate. Perhaps because I am conscious of the¬† ‘rule of half as long again’ I make my healing happen to that time scale, but there have been times when I honestly haven’t been thinking about it and have suddenly realised that it has happened again. In 2009, for example, I woke up in a Paris hotel one February morning and remembered that it was the 5th anniversary of the end of my ten year marriage. Previously, this particular date in February had been a struggle each year as I saw the anniversary looming and rehearsed painful history and difficult feelings. That morning in Paris I realised that I hadn’t even noticed the anniversary; I was just getting on with my life.

I am so convinced by the rule that I apply it to all sorts of things. Quite often the calculation helps but sometimes, I admit, it can be sobering; there simply aren’t enough years left in my life for me to get over some of the things I’ve lost. I raise this rule¬† (a little playfully perhaps) in order to illustrate the impact of loss and change on our lives. It is said that life events such as divorce, moving house and changing job are the source of some of the highest levels of stress we are likely to experience. Each of these events, of course, represents a transition in that they all involve an ending and a beginning. Certainly I recognise in my own experience of relationships ending and of career and house moves, a period of grief, anxiety and sadness at what I have lost, as well as the anticipation of starting something new – and these are feelings I experience even when I’m looking forward to change. Is it any wonder, then, that Dylan should mourn for the loss of his school?

Dylan attended a National Autistic Society school between the ages of 11 and 19. He went to that school five days a week for eight years. He got on the school bus every morning at 8.15am and returned on it every day at 5pm.¬† That’s a lot of hours.¬† That’s a lot of time to spend getting to know every nook and cranny of a playground. That’s a lot of years to spend getting to know the way your teachers’ faces look and the sound of their voices and the rhythms of their classrooms.¬† That’s a lot of minutes to spend learning to be part of a group in assembly each day.¬† That’s a lot of seconds to spend getting to know a place so well you feel that you belong. That’s a lot of snow and sunshine and wind and rain and light for darkness and silence to fall, suddenly. Applying the rule of half as long again, I make that four years of Dylan grieving for that school. Starting now…

Objects of Reference

As a parent of an autistic child it can feel as if life is one long transition; as soon as one phase is negotiated I am looking ahead to the next, wondering what provision is available and how I can support my son to access it. The move from a school placement to adult services would, I knew, be the most challenging¬† transition Dylan had faced yet. I also knew that I’d need to actively support Dylan with transition from school because of his experience of leaving his respite (short break) provision the previous year.

transition 005Transition from school to adult education takes place at 19 whereas transition from children’s to adult services in the respite sector is 18. Dylan had been accessing a respite setting one night a week since he was at primary school and leaving the setting therefore represented a significant challenge for Dylan. Although the lack of alignment between the transition from education and respite care¬† is awkward, it could potentially ease the process by staggering change, allowing a young adult to manage a transition in respite care at 18 while in a familiar school placement, and then a transition from education at 19 once the new respite provision is established. Unfortunately it didn’t happen this way for Dylan; a four month gap in provision left him anxious about the break in routine and confused about why he could no longer go to the respite setting he loved.

Dylan leaves school 007When Dylan left the short break setting he was given a photo album record of his time there. Nearly two years later Dylan continues to look at the photos regularly. Recently he has started carrying it around with him and bringing it to show me photos and to ask me to talk to him about his time there. The album seems to be an important object of reference for Dylan; I think it represents a period of stability and Dylan looks at it at times of confusion to comfort and reassure.

Because of the lack of support for transition from respite I paid extra attention to preparations for Dylan as the end of his time at school approached. Unfortunately, in spite of years of researching and lobbying for Dylan, the experience of transition from school turned out to be¬† worse than from respite; four months after he left school Dylan still does not have a full time adult placement. In the absence of any plan for when he left school, Dylan’s teachers and I were unable to prepare him in the way we knew he needed. We did our best.¬† I visited the school to discuss and develop the use of an i-pad to support Dylan’s transition. I started using communication software at home which Dylan used at school. I made a gallery of photos of Dylan’s time at school. The school speech and language therapist wrote a social story about leaving school – not ideal, as we couldn’t be sure where Dylan might go instead, but we opted for one of the placements that was being discussed and crossed our fingers.

cetificates 005At the school Leavers’ Assembly I wasn’t sure whether or not Dylan understood what was happening. He only half-accessed the event, collecting his certificate from the side rather than the front of the hall and legging it at high speed afterwards. I thought that Dylan probably either knew exactly what the significance of the event was or had no idea. Afterwards I encouraged him to choose a frame for his leaving certificate and helped him hang it on his bedroom wall, wondering¬† if this object of reference would become another focus for grief – and if so, whether or not this was really helping Dylan?

Loss and Remembrance

Since Dylan left school I have been in continuous negotiations with relevant professionals while he accesses an ‘interim package’ of support.¬† The difficulty for Dylan, of course, is in the interim-ness of the care. With the false starts, uncertainty and lack of a fixed schedule it has been hard for me to tell Dylan what is happening from day to day. Despite best efforts, this is the worst case scenario for Dylan and I’ve been watching him carefully, trying to fathom how he is feeling and how well he is coping with the loss of school and the lack of certainty in his days.¬† There have been some signs of anxiety – the jumping which Dylan does when he stressed, for example – but, generally, I’ve been surprised by how well he is coping.

transition 001However, when I went into his bedroom one evening last week I was amazed to find it full of greetings cards. Dylan had arranged these on his drawers, shelves and wardrobe; the room was a riot of colour. You will see from the photograph that the cards mark a variety of different events but prominent among the messages are ‘Good Luck’ and ‘Sorry You’re Leaving’.¬† These are the cards which Dylan received from his short break provider and from school when he left. I’d stored these, along with last year’s birthday cards, in a box in Dylan’s room. I had no idea Dylan knew they were there but clearly (as with many things) he knew exactly where they were. Why did Dylan decide to get them out of the box and stand them up in his room? I assume because they are ‘objects of reference’ for a transition – or process of change – which he is struggling to come to terms with and which creates strong emotions in him.¬† Getting the cards out of the box and putting them where they could be seen seemed to me to be Dylan’s way of recognising and acknowledging his continuing sadness and loss. The cards represent places where Dylan was happy; displaying the cards appeared to comfort him but they also acted as a means of communication with me, letting me know that he was thinking about places he has lost and was feeling sad.

transition 006At this point I made a connection between the incident with the greetings cards and something else that Dylan has been doing recently.¬† I keep a photo of my mum, who died in 2006, on a high shelf.¬† It is the only photo of my mum on display in the house and one day I noticed it was missing. I found Dylan with it; he was sitting downstairs, holding on to it and looking at her intently.¬† Part of me was delighted to see this. Dylan adored his Gran; when she died suddenly, and without Dylan being able to see her or prepare in any way for what was to happen, I was very concerned about the likely impact on him (and on my younger daughter). Dylan’s social worker at the time gave me social stories to read to Dylan and made various suggestions about how I might help him to understand, but Dylan appeared unconcerned. His apparent lack of interest in my mum’s sudden disappearance from our lives both troubled and relieved me; part of me didn’t believe it, part of me was glad that Dylan appeared not to be suffering.

transition 007Finally, seven years after my mum died, I think Dylan has started to openly grieve for her. The photo regularly goes missing from the staircase now; I know, when it does, that Dylan is experiencing feelings of sadness and loss. The photo of his Gran seems to comfort Dylan. He has also started talking about her and bringing me a particular story book which he associates with her. Last week, on our trip to the library, he chose The Train, a book¬† which ends with a little boy getting off the train to be met by his Gran at their destination station. This worried me a little as I had booked a steam train trip for us that weekend, which I knew Dylan was looking forward to – was he expecting to find his Gran at the end of the line I wondered? I was so concerned about this I mentioned it to a counsellor. Her reaction surprised me. She thought for a moment then said this was probably a healthy thing for Dylan to be doing: that if we all joined up our experiences of loss and grief, and put them together as Dylan seemed to be doing, then we might find better ways of healing. Dylan, she suggested, is making creative links between periods of loss and change in his life, and is grieving in his own way, in his own time. This makes sense to me and has been a help. Now, instead of feeling anxious that Dylan is feeling sad when he fetches the photograph of my mum, I talk to him about his feelings and try to affirm them. I also try to remember that the link which Dylan has made is that he misses school like his misses my mum: ‘Your Gran would be so proud of you’ I said to him last week: ¬†‘to see you leave school and start at the day centre, all grown up.’

What have I learned from this? That ‘transition’ is another word for loss. That when we lose something we don’t always show at the time how sad it makes us.¬† And that Dylan has his own ‘grief map’ of things he has lost and which he misses. Transitions are never easy to prepare for but some are more difficult than others; my professor’s ‘rule of three’ ¬†can’t help with the death of a parent, as I found out.¬† Such a¬† reflection raises the difficult thought that one day Dylan will face a deeper loss than any yet. Perhaps these smaller losses, and Dylan learning how to remember them, are part of the preparation for that.

Tap Three Times: communicating without speech

owl babiesAlthough¬†my 19 year old son¬†is ‘non-verbal’ he takes an interest in a range of language-based activities. In describing Dylan as non-verbal I wouldn’t want¬†to give the impression¬†that he is silent; on the contrary he is very vocal. Few autistic people are¬†completely ‘non-verbal’; most children and adults have some recognisable sounds which they use to communicate even if they tend not to use speech. It has been suggested that ‘restricted-verbal’ is a more accurate description than non-verbal. I’d say that’s a fair description of Dylan’s relationship with speech at the moment; he has a range of creative strategies which he uses pretty effectively in order to meet his needs and he enriches these with some limited verbal communication.

Any parent who has observed their child developing language will have witnessed the role of clapping, turn-taking, repetition, chanting and rhyme in the development of speech. As a poet, also,¬†I know the power of language and the way in which these patterns can charm themselves into¬†the brain.¬† We know that these are really helpful linguistic resources to offer babies and toddlers in the ‘pre-verbal’ stage so I’m not really surprised that the things which seem to trigger Dylan’s attempts at speech are picture books and songs with rhythm and rhyme.

Dylan’s current vocalisations include include ‘songs’ and calls, onomatopoeic sounds and a range of repetitions and habitual noises which are not unlike a baby’s babble. He left school last summer and at the moment¬†I’m¬†looking for an adult education placement¬†so¬†that¬†specialist staff¬†can continue to support Dylan to develop his¬†communication.¬† Last week a ‘man from the council’ came with me to visit a potential provider. During the drive I explained to him why it was important that Dylan continued to access this sort of provision. My son, I pointed out, was showing signs that he was becoming more language-aware.¬† The developmental delay associated with Dylan’s learning disability and autism was significant but he was making progress and I was convinced he had potential for more.¬† “If you look into his eyes”¬† I said to the man from the council, “you can see how alert he is …

*

A memory.¬† It is the Easter following Dylan’s birth and on the first warm day of the year I have driven to Charleston House on the Sussex coast . Dylan is just over a month old and dressed in a blue striped suit and sun hat. I am sitting in the gardens with the baby beside me in the grass. Two sensibly-dressed middle-aged women walk past and glance at Dylan: “what an alert baby you have”, one of them exclaims, “you must talk to him a lot?”¬†

charleston

Charleston House, Sussex

Two years later, when Dylan was assessed for autism, I thought about the women at Charleston House. Perhaps the memory helped me to deny there was an issue with Dylan’s language development (even if I acknowledged his autistic behaviours). I thought my clever toddler was having a laugh. I remember one night whispering to him: “come on Dylan – I know you can talk – just one or two words – ¬†that’s all ¬†– just something to show you can.”¬† I was scared we were on an elevator that we wouldn’t get off; that Dylan would receive a forever label.

As it turned out the professionals involved in Dylan’s care were not keen on labels.¬† They weren’t useful, I was told, unless they helped to access resources.¬† So without any assumptions about Dylan’s language development (though with an ‘it looks like autism’ verdict) we joined early intervention groups with other families whose children were causing concern. I had given up on Penelope Leach’s ‘From Birth to Five’ at some point during Dylan’s first 18 months. The baby milestones she described seemed less and less relevant to Dylan and increasingly unhelpful. So when I discovered a network of parents accessing children’s services, they became my new reference point.

*

Parents¬† of children undergoing assessments for development delay compare their children with others in the same way that parents of ‘neurotypical’ children make comparisons at play dates. ¬†This can be comforting, at least temporarily, as it helps establish a new norm; saying or hearing the words ‘oh my child doesn’t either’ makes your child part of a group and this sense of belonging, and of similarity instead of difference, is helpful. However, just as there can be peer-generated pressures among parents of mainstream children – whether a child can draw a recognisable human being by a certain age, count to 20 or write her own name for example – so there can be peer-generated pressures among parents of children with special needs.

Because these pressures almost always arise from a perception that access to resources are performance-driven and limited, they tend to create stress. On the run-up to Dylan reaching school age, I felt under pressure from a commonly-shared belief among parents (corroborated by some professionals at the time) that in order to secure a place at the sought-after local specialist school, Dylan had to be out of nappies and talking before he was five. Also difficult was the wisdom circulating that: ‘if your child isn’t talking by five he probably never will.’

Having established a ‘new norm’ it was hard to watch as other children who had appeared similar to Dylan became verbal and made progress in leaps and bounds. ¬†But these developmental surges also gave me hope; if another child could undergo such apparent transformation, then so could mine. In time, however, I realised that Dylan had his own trajectory; he made progress, but it tended to be slower than other children. Dylan’s learning disability was far more significant than I’d imagined initially and, it transpired, his ‘communication impairment’ was severe.

*

Dylan was not talking by 5 years old and at 19 is still classed as ‘non-verbal’.¬† Although everyone with an autism diagnosis experiences difficulty with communication to some degree, the gap between the non-verbal and highly verbal adult can create a sense of it being a very wide spectrum indeed. Recently I was part of a small lobby group which met with Nick Clegg¬† (my constituency MP) to discuss adult services for autistic people in my area. In order to raise¬† awareness of the spectrum nature of autism the group included myself (as a representative of someone who also has a learning disability and is ‘non-verbal’) and an able and articulate autistic woman. After the meeting¬† I was chatting about Dylan and must have used language sloppily as, at some point,¬† she quite rightly interrupted to remind me that while Dylan might not be verbal, it didn’t mean that he couldn’t communicate: “Someone with autism is communicating every time they get angry”, she told me.

Dylan doesn’t often get angry but he does sometimes get frustrated.¬† I think that this frustration is frequently at his failure to make himself understood – some of Dylan’s behaviour (such as standing jumps) is Dylan trying to communicate that communication isn’t working. ¬†When communication between us does work it is often based on me intuiting what Dylan feels, needs or wants from his actions. At a very basic level Dylan uses ‘motoric communication’. This means that he uses my body as an extension of his own.¬† Dylan is adept at leading (or, if I am resisting, pushing and pulling) me to where he wants to be, or to show me what he wants. This usually involves him manipulating my right arm, but sometimes he uses my finger to indicate what he wants or to show me the help he needs. This is a mode of communication which Dylan has been using since he was a toddler and which I try to discourage now he is physically much stronger than me and capable of more sophisticated strategies.

Communicating with me through representations of an action, rather than through the action itself, is one such strategy. Dylan can recognise and use photographic and representational¬† images to communicate and is confident with rebus symbols, picture exchange systems, visual timetables and increasingly with communication software. Of course pictures are not always available but Dylan is good at improvising through ‘objects of reference’. If Dylan wants to walk he might bring his coat or shoes, for example, and he uses a particular backpack to request information about the daily schedule. ¬†As well as actions, pictures and objects, Dylan sometimes uses gesture to communicate. Although he doesn’t sign, Dylan increasingly gesticulates with his hands and even at times shapes a point. There are different kinds of point; an ‘indicative point’ might be used in response to a question (‘Dylan which T-Shirt do you want to wear?) while a ‘declarative point’ is more of a statement than a response and important in that it can initiate communication. The point I am most interested in, however, is one which ‘shares the world’ with me; if Dylan points in order to show me something (a duck for example) then this is a high point of my day indeed.

*

A memory.¬† It is a winter morning and I am loading Dylan into the baby seat in the back of my car. He is around 20 months old. My new partner is hovering on the pavement to wave us off. I get into the driver’s seat and turn round to Dylan: “Look” I say pointing at the face in Dylan’s window, “wave bye bye”. Dylan looks blank. His arm lies limply in his lap, then he half-lifts it in a sloppy arc. ¬†I think to myself it is hardly even ¬†a wave…

I had noticed something important that morning. Within a few weeks of this memory, Dylan had lost his non-verbal communication completely and it would be many years before I saw him wave again.¬†However, I remembered Dylan’s earlier use of gesture and had clear memories of him sitting on my lap pointing to things in his picture books and waving goodbye to people. Only very recently have these gestures started to return. Dylan’s new wave is fast and flappy but he uses it appropriately and knows what it means, and his indicative point – with a flamboyant final flourish – is increasingly reliable. He has also developed some gestures which are all his own; three taps on his chest or mine means ‘I love you’ for example…

owl babies 2Tapping three times on your chest is an action Dylan has based on a gesture I make when reading the last page of¬†Waddell’s ‘Owl Babies’. In the story the mother owl returns after a night’s hunting to her three owlets and the smallest, ‘little Bill’, jumps up and down on his branch declaring: “I love my mummy”. Rather than bounce up and down while reading to Dylan, I developed the action of three taps on his chest and over the years Dylan has copied this gesture.

*

Increasingly I see in Dylan an awareness of his own limitations and difficulties. When he was younger I thought I saw this in his more able peers but felt that Dylan was to a large extent free of self-awareness and therefore of any sense of difference or failure.¬† Recently, as Dylan has made more attempts to communicate, I have noticed how disheartened and anxious he can become if I don’t understand him or respond positively. If he attempts a word I don’t recognise, for example, and I ask him to say it again, he will often retreat to a quite different but familiar word¬† – usually ‘The Queen’ (as in Snow White). Given the lack of clarity in Dylan’s speech and the individual nature of some of his gestures (such as tapping three times), establishing a system of communication with which Dylan can be understood in the community as well as (with luck and patience) the home, is surely worthwhile.

Any limitation on the effectiveness of¬†Dylan’s communication probably has more to do with our inability to understand than with Dylan’s intent to communicate. Clearly, however, it would be ‘a good thing’ if Dylan could be helped to develop more speech as that would give him some independence in the community and increase his potential effectiveness as a member of society. I don’t know whether Dylan’s increasing interest in language will continue or not, but – as I explained to the ‘man from the council’¬† – I’m fairly certain there are things we could and should be doing to help. In England the policy on funding educational support for post-19 adults is in flux but the new 0-25 SEN code could potentially offer such an opportunity.