Canaries, Covid and Christmas

I’m happy to report that Dylan has continued seizure-free. This suggests the medication he has been prescribed is a good starting point for managing the epilepsy. Equally, the absence of episodes could be linked to the fact that Dylan has been able to resume some of his regular activities. Certainly, he seems to be less stressed than he was a year ago. In this blog I share some Christmas updates and reflect on the continuing impact of coronavirus on Dylan.

Canaries

Coal miners carried caged canaries into underground tunnels as the birds would alert them to the presence of noxious gases. I think of Dylan as a sort of ‘pit canary’ for the environments we have to negotiate in our daily lives.  If a place or situation triggers ‘behaviours’ in him then It might suggest that there is something stressful about the circumstances which could potentially unsettle any of us.  

Dylan has no ‘filter’ so if he finds an environment uncomfortable or threatening he will express his feelings through behaviours ranging from mild (jumping and pacing), to moderate (smashing or ripping) or extreme (hurting himself or others). Those of us who are not autistic and learning disabled know that it is not acceptable to bite someone or smash crockery but it doesn’t mean we experience the world as any less stressful than Dylan. I’d hazard I’m not alone in having felt like smashing a few plates over the last couple of years. 

Living in the age of pandemic will be taking a toll on all of us. Observing Dylan’s unfiltered physical and emotional reactions to  the environment leads me to reflect on the impact of managing our stress and anxiety through internalising rather than externalising behaviours. Perhaps someone should set up jumping, tearing and plate-smashing arenas where we can self-regulate as Dylan does.

Testing Times

Speaking of Arenas, I was relieved to be able to take Dylan to his beloved Disney-on-Ice at Sheffield Arena last month.  It’s become an annual Christmas tradition for Dylan and one that he missed terribly in 2020 when it was cancelled due to Covid-19. I optimistically bought tickets for this year’s show and crossed my skates that it would go ahead. 

On the run-up to the performance all seemed well so we included it on Dylan’s programme and allowed him to feel the anticipation he experiences so intensely.  To my dismay, just days before Dylan was due to attend the show, new regulations meant that all ticket holders would have to provide proof of C-19 vaccination or a negative Lateral Flow Test (LFT).  Dylan has refused all attempts at vaccination and we had never attempted to test him for C-19, assuming he would not consent to a process which is physically invasive and can be experienced as distressing. I was beside myself.  What to do?  I dreaded the meltdown that would ensue if I told Dylan that Disney-on-Ice was ‘closed’ after all.

I received daily texts from the venue reminding ticket-holders of the requirement to provide proof of Covid-19 status and including additional guidelines such as the need for an LFT to have been reported and notified to a mobile phone. A test kit showing a negative result would not be acceptable. Part of me was concerned that this new world was one from which Dylan (and those like him) would be excluded. Having spent the last few months returning to his regular activities, would Dylan now find himself locked out of some of the things he likes to do because his disability means he can’t provide the necessary documentation? The other part of me was determined to get him  in. 

The only option seemed to be to persuade Dylan to cooperate with an LFT. So,  a week before the event I got Dylan to watch me testing myself and to copy everything I did.  To my surprise he was quite comfortable swabbing the back of his throat – more reluctant to insert the swab in his nose but able to do enough to get a valid reading. This was an exciting breakthrough. If we could test Dylan regularly this would not only open up opportunities for activities but enable informed decisions about managing Dylan’s health care.

On the day of the performance I was nervous about whether Dylan would be willing to take a test for a second time but he cooperated beautifully. This was not the end of my anxiety about getting Dylan into Disney-on-Ice that evening, however. Having reported Dylan’s negative result  in the afternoon, it had still not been notified to my phone by the time of the show. I tried reporting again, and the care home submitted an additional report, but still nothing.  I was a bag of nerves, checking my phone and thinking how terrible it would be if having encouraged Dylan to cooperate with the testing process he was denied admission. To my huge relief, however, Covid-19 status wasn’t checked at the gates that evening. 

Notification of Dylan’s test result was finally delivered to my phone five hours after I reported.  I guess on a Friday night the system was log-jammed with people like us, needing proof of a negative LFT. The stress and anxiety I experienced getting Dylan into the Arena were worth it, however.  Dylan spent the performance on the edge of his seat, clapping enthusiastically (in appropriate places) especially for his beloved Ariel and the clock and candlestick in Beauty and the Beast.  It was lovely to see him so happy. It’s great that we can now test Dylan regularly and the experience has reminded me not to assume that Dylan won’t do something until I’ve tried everything, including authentic motivators such as admission to Disney-on-Ice.

Back to the Moon

Dylan has continued to enjoy the resumption of his overnight stays at the moon (aka Premier Inn). One of the benefits of my having retired is that I now have the flexibility to support Dylan during the week as well as at weekends. This means I can look for the cheapest night on offer at his beloved ‘moon hotels’ instead of having to pay high rates at peak times. The savings are so dramatic I’ve decided it is perfectly reasonable for Dylan to make a trip to a moon once a month.

In November Dylan thoroughly enjoyed an overnight stay at the Premier Inn in Cleethorpes. We have visited the resort regularly as it’s the closest coast to our home city but we have never stayed overnight.  On previous day trips, Dylan has pushed and pulled and cajoled me to the Premier Inn so that he can stand and gaze at it. He was needless to say in high excitement that this time he got to go inside (with a pumpkin lantern and Doctor Who).

For December I had booked a stay in one of the Premier Inns in Chester, to coincide with a visit to see the Christmas Lanterns at Chester Zoo. Storm Arwen scuppered our plans, however, with the Zoo having to close its gates in order to clear the debris and the Pass over the Pennines too treacherous to risk. I figured Dylan would cope with the cancellation of the Zoo trip but not with the disappointment of no moon.  In a moment of inspiration I booked a night at our local Premier Inn as replacement.  It’s a high-rise hotel which we drive-by every week and which Dylan has rubbernecked for years: ‘moon, moon’ he shouts.  The storm might have interrupted travel but it wouldn’t stop us walking three miles …

Dylan and I had a marvellous night. I had asked to be allocated a room on the top floor. Dylan was mesmerised by the view and enjoyed picking out familiar places.  We spent an evening being tourists in our home city, riding the Christmas carousel and dining out. What I learned from this is that the highlight of our trips for Dylan is staying at a moon hotel – he’s as happy three miles as 103 miles away from home. Still, I re-booked the Chester Lanterns after the storm had passed: two moons in December for Dylan!

First Christmas 

After Dylan helped me decorate our Christmas tree one weekend it occurred to me he would probably enjoy decorating his own flat. Any 27-year old spending their first Christmas in their own place would surely love that. Jay, who coordinates the social enterprise at Dylan’s residential home, supported Dylan to choose a tree and make his own decorations and trimmings for the walls. Dylan’s flat looks fabulous.  I especially like the paper chains. This is the sort of thing about Dylan’s life which makes me smile.

Dylan came home for the Christmas holiday.  I decided not to take him to visit my Dad, who isn’t well, but we saw my sister and enjoyed winter walks, good food and favourite films. 

Dylan made the wreath for our door and helped to decorate the Christmas Cake. The Poinsettia was his Christmas gift to me.

Another Covid Year

As the year turns, my concern for the future is not so much the threat of the virus to Dylan as its impact on his quality of life. Dylan is young and fit and if he does contract C-19 there is every reason to believe he would cope with the infection.  The current regulations around testing and isolation, however, are causing chronic staff shortages in the care sector, including at Dylan’s setting. This is a situation which poses a range of challenges and risks for staff and residents, especially in the context of adults with intellectual disability and autism. 

By way of illustration, some of the consequences of staff shortages for Dylan include the cancellation of trips and activities; inability to support with some personal care routines (such as shaving); reduction of supervision at key times of day; and the need for Dylan to spend additional nights with me. Fortunately, I am able to support with this (again, thanks to my having retired) but it’s not a satisfactory or sustainable solution to caring for a vulnerable adult with complex needs. Dylan and other adults like him require high levels of staffing in order to maintain the routines and activities which promote their health and well-being, particularly in relation to managing anxiety. I fear that the current situation leaves Dylan vulnerable to stress and therefore at risk of further epileptic episodes.

I suspect the issue of staffing in care homes is going to be a key challenge in 2022. While the regulations around the management of C-19 is creating the current crisis in staffing, the reality is that it has always been difficult to recruit and retain care workers. If the present situation leads to a review of employment pay and conditions in the care sector, then that will be a silver lining from yet another Covid cloud. Here’s hoping for better times ahead.

Thank you for following our blog in 2021

 Health and Happiness in 2022

Crossing the Threshold: Dylan and the Last Weekend

Dylan is in the habit of greeting people with a hand shake while out and about in the community. He doesn’t  take the hand of every passing stranger, and he doesn’t do this every time he goes out, but if he sees someone he likes the look of he will extend a hand.

This is a relatively new thing. Previously, Dylan used to like to touch people on the head. It took me years to shape the behaviour to something more appropriate. At first Dylan applied his new learning everywhere.  When he greeted me with a handshake one morning I realised I needed to teach some social rules as well. Eventually Dylan grasped that family and close friends can have hugs but everyone else gets a handshake or thumbs up.

Usually members of the public are charmed by Dylan’s greeting and happy to shake him by the hand. In February, however, during a day out in Bakewell, two people refused Dylan’s outstretched hand.  The first man buried his hands deep in his pocket and mumbled ‘I’m a bit busy’.  The second man shook his head and strode past.

What is wrong with people in Bakewell, I wondered to myself.  ‘Don’t worry’, I said to Dylan. ‘Not very friendly people’. I turned and looked over my shoulder at the man hurrying in the opposite direction. He was looking back at us with alarm.  Suddenly I realised.  It must be the news (from elsewhere) of Coronavirus.

Hands

After the trip to Bakewell I suggested to staff at Dylan’s care home that he wear gloves on trips out.  That should reassure the public, I thought. More importantly, someone pointed out to me,  it would protect Dylan. While Dylan wouldn’t choose to put gloves on,  he is quite happy to wear a pair if he is given them. That’s a lucky thing, I thought to myself.

Later that week,  with the first cases of coronavirus confirmed in England, Boris Johnson announced we should wash our hands while singing Happy Birthday. This was going to be tricky; Dylan hates the Happy Birthday song and clamps his hands firmly to his ears on hearing the opening note.

Although hot air hand-dryersare not the problem they once were, handwashing continues to be cursory for Dylan who needs encouragement to wash hands. I have been in the habit of supplementing Dylan’s handwashing with regular use of hand sanitiser but suddenly there was none to be had.  Clearly, I would need to establish alternative practices.

In the following weeks I introduced a ‘Count to 20’ game with Dylan while we washed hands together. Dylan now recognises and seems to enjoy the new routine. This, of course,  is good practice with or without a global pandemic and I wonder to myself that I didn’t attempt it sooner. There is always positive learning from a bleak situation.

Faces

As February gave way to March I turned my attention to plans for Dylan’s birthday.  As well as a weekly programme Dylan has a monthly countdown chart and for weeks Dylan had been ‘asking’ when his birthday would appear. Dylan had been promised a trip, by train, to his beloved Durham and an overnight stay in his hotel chain of choice (Premier Inn). I had already booked the tickets and accommodation and on weekend visits home Dylan would check the documents were still on my desk and ask ‘Deeham? Bur?’

We were not yet in Lockdown or even social distancing. The main advice continued to be the Happy Birthdaysong. On the run up to the trip, however, the situation was worsening. I checked the numbers of Covid-19 cases in my city.  Three.  Not too scary. According to the Government web site, there was only one confirmed case in Durham.  I telephoned the Premier Inn to ask whether they were still open and to enquire about their cleaning regime.  The receptionist seemed taken aback by my call. They were fully booked for the weekend.  Yes, the restaurant was still open. They employ professional cleaners, naturally.

My main worry, however, was less the hotel than the journey.  Dylan doesn’t understand the etiquette of covering his mouth when he coughs or sneezes. Even though he and I were both well,  if Dylan coughed it could alarm passengers. It was impossible for me to anticipate his sneezes and catch them. I could drive to Durham but I was quite aware that part of the joy, for Dylan, is arriving by train (something about the view of the Cathedral  and Harry Potter).

I wondered if I could persuade Dylan to wear a face mask.  I trialled two versions: dust masks from the local hardware store and medical masks from Dylan’s care home. Not only would Dylan not accept either of them, he wouldn’t let me wear one either. This may be because the mouth-areaseems to be a part of the face Dylan uses to support communication. And, on that point, imagine how difficult life must be at the moment for members of the deaf community for whom lipreading is key.

I prevaricated about our planned trip up to the morning of departure. Cancelling carried a risk just as going ahead did. If I decided to abandon there was no way I could explain this to Dylan. He would be desolate and inconsolable and there would, without doubt, be challenging behaviour to manage as a result. I discussed my dilemma with family, friends, neighbours and care home staff. There were different views.  A common concern was the possibility that I would become ill and unable to take care of Dylan or myself. I checked my temperature daily. All seemed well. I prepared myself as best I could:  paracetamol; thermometer; tissues; antibacterial wipes; gloves; and (just in case) face masks.

Threshold

Dylan was due to turn 26 on the 14^th March.  I have always considered this an important milestone.  Based on experience and observation, I have come to think of it as the age at which we cross the threshold into adulthood. At 26, there is an emerging confidence in self and a tendency to independent thought and action. Our confidence is quieter; an acceptance of self, perhaps.  By this age we have figured out who our friends are and who we want to keep close in our lives. We have learned how and who to trust. We have worked something out about our values as human beings.

Dylan may be autistic with an intellectual disability but he also has been maturing. I have watched his quiet confidence grow and realised that he has, by now, figured out what is important to him and how he wants to live his life. I have witnessed him learning to trust other adults and make judgements about who and how he wants them to support him. While Dylan will never live an independent life, he has developed independence of thought and action. As Dylan’s 26^th birthday approached I congratulated myself that I had achieved a goal I set for myself while Dylan was still at primary school:  I had steered my son safely to adulthood. The planned trip to Durham would mark the end of Dylan’s childhood.

The Last Weekend

My anxieties about the journey proved unfounded and we arrived without incident. As well as an emergency kit I had packed candles and matches as the first activity on Dylan’s programme was to buy a birthday cake. We called at a supermarket on our way to the hotel. Dylan chose a Peppa Pig cake (I would never have got that right if I’d bought it in advance).

Dylan had opened his presents that morning and had brought his new books with him:  Pinocchio, Sleeping Beauty and Peter Pan. Dylan carried Peter Pan with him all weekend, stopping to look at the book and holding it up sometimes as if to show Peter his beloved Durham.

Dylan re-traced a familiar route through the city but there were  changes since our last visit. Dylan’s favourite café had been re-branded and now sells Thai food. Dylan had been talking about the potato with butter and cheese he was planning to order for his lunch since we planned the trip and I felt my sharp intake of breath as I steeled myself for Dylan’s reaction. And is it the magic of being 26 that means Dylan can shrug this off, accept my proposal of the Cathedral café for lunch instead?

While we ate our jacket potatoes in The Undercroft I puzzled at the normality of everything.  In the café, we’d had to breathe in and out and weave and ‘excuse me’ past tables barely at arm’s length from each other.  There were babies and children and teenagers and parents and grandparents, all out chatting and laughing and going about their Saturday pleasures.  The train had not been less busy that morning.  The streets were jostling.  A market in the Square was in full swing.  Had I misunderstood the nature of the virus? Imagined it even?

After years of renovation, the Cathedral tower had re-opened. Dylan chose to climb the 325 steps to the roof where he edged gingerly around the railings saying ‘whoops’. Inside, the university orchestra were rehearsing for a performance of Bruckner’s 4^th Symphony.  After our trip up the tower,  Dylan and I sat for a while. A birthday blessing.

Outside there were daffodils and a town parade departing from College Green: Dylan jumped with delight when the brass band started up and they marched off, heading towards the town square. People stood smiling and cheering.  Dylan and I walked to the river and headed out of the city towards the Rose Tree Pub. A celebration blackcurrant cordial for Dylan and a Pepsi for me. ‘Cheers Dylan. Happy Birthday’, I said.

That night we had dinner in the hotel restaurant before lighting Dylan’s candles in our room (no singing). The hotel and restaurant were full with couples and families. No one was talking about the virus. Everything seemed normal. Dylan was happy. I had been catastrophizing again. How foolish I would have been, I told myself, not to come.

The Change

The next day, over breakfast, I checked the local attractions. Apart from the Castle, everything appeared to be open as normal.  I suggested to Dylan that we take a walk around Wharton Park which we hadn’t visited before. From the Battery above the railway station we watched people waiting for the Plymouth train. I tried to count the peals of bells ringing out across the city. We walked down Sidegate to Crook Hall where the maze had thickened since our last visit. Dylan checked all the dead-ends before heading to the café for lunch.

Walking back to the hotel to retrieve our bags we saw a few students being collected by parents.  Some were in tears on the street, hugging their goodbyes.  Durham University had announced it was closing and students had been encouraged to leave.  I was expecting to teach my undergraduate students later that week so hadn’t taken the time to imagine how it would feel if your year was suddenly cut short and you had to say goodbye to friends.  I could see in the faces of students and families that it was hard. But this was the only sign of change that day. The shops were open and fully-stocked. People were out, enjoying the spring weather. Musicians  were playing on Framwellgate Bridge.

On the train journey home, in an idle moment,  I checked the virus stats.  There was still only one confirmed case in Durham but the number in Sheffield had risen to 13.  Ten new cases in 24 hours.  I couldn’t figure out whether that was bad. I had booked ‘airline style’ seats on the train so that we were not facing other members of the public. Dylan was listening to Florence and the Machine on his iPad and flicking through his Peter Pan book. Just outside Darlington, to my dismay, he started to cough. But he covered his mouth!  Had someone at his care home taught him to do this I wondered? I was impressed.

Dylan only coughed twice but it was enough for me to think about my emergency kit.  I’d gathered the various items up that morning while re-packing the bags. I couldn’t visualise packing the packet of paracetamol.  I got down my bag and checked.  I was right.  How odd. I distinctly remembered unpacking the paracetamol and putting it on the wardrobe shelf.

Lockdown

The departing students and disappearing paracetamol were the only signs that we were on the cusp of change that weekend. An ‘essential journeys only’ directive was issued the day after we got home. The next day, the university where I work moved all teaching online. The following day, confirmed cases of Covid-19 in Sheffield reached 36. By the end of the week the schools had closed. At the weekend we were asked (and, when the public disobeyed, subsequently told) to stay indoors. Dylan’s birthday trip had turned out to be a last gasp before the collective intake of breath.

As I write this, three weeks later, there are 833 confirmed cases in Sheffield. It is reported that the city has the highest rate of infection outside London. There are reasons why the number of cases is disproportionately high, given the city’s population (582, 506), but for residents the figures are still alarming.  In this situation, caring for an adult with autism and intellectual disability raises particular challenges which I will reflect on in my next post. As well as the difficulties, however, I will be celebrating the creative ways in which staff at Dylan’s care home are helping him adjust to the strange world he crossed the threshold into the weekend he turned 26.

Thank you for reading at such a time as this –

Stay well, stay safe

Dylan and Liz

No More Moons

Dylan and I usually go away twice a year, at Easter and during the Summer. For the first time ever, we didn’t have a holiday at Easter this year. I wasn’t sure whether Dylan would notice but he was clearly disappointed.  Although time is not an easy concept for Dylan he makes associations with key events through the year and keeps track of it. So when I gave Dylan his Easter Egg he looked at me and said ‘cot’ quizzically. He was, I realised, asking me when we would be setting off to a holiday cottage. ‘Not this year, Dylan’ I said.  ‘Boat?’ he asked, hopefully.

I hadn’t booked a cottage (or boat) for Easter because I thought my marking might fall awkwardly  this year and that I would have to work through the break. In the event the students have only just submitted their assignments so I could have taken Dylan away after all. Perhaps next year I will. Meantime, I am experimenting with regular overnight trips instead;  the money that we would have spent on a week’s holiday I am planning to use across the year.  This should mean that I can take Dylan on a short break every six to eight weeks.  I will be curious to see whether ‘little and often’ is better for Dylan than less frequent longer breaks.

So last weekend Dylan and I went to Durham, a place he loves and which he has recently been ‘asking’ to visit again (‘asking’ involves Dylan collecting leaflets of things he is interested in and stacking these up in piles in his bedroom like ‘vouchers’). Conscious that the last time Dylan and I went on an overnight trip (visiting Brighton for his birthday) I  vowed never again to stay in a Premier Inn, I decided  this trip would be a good opportunity to try and extend Dylan’s repertoire.

I knew that moving Dylan from the Moon wouldn’t be easy. Dylan has been fixated on ‘Moon Hotels’ for years and staying in Premier Inns has been part of the raison d’être of our trips. Dylan adores the moon logo and enjoys  the familiarity of the purple branding and predictability of  facilities and services. The buffet breakfast (as much as he can eat of things he loves) is probably also part of Dylan’s love affair with Premier Inns 🙂 I figured that if we were going to stay somewhere different I needed to ensure it offered something the Premier Inn couldn’t; I wanted a hotel with compensating attractions. So I browsed the other hotel options with Dylan’s favourite places and activities in mind and opted for a hotel on the bank of the river which Dylan likes to walk, with a view of his beloved Cathedral.  I also had an Ace in my pocket:  the hotel had a swimming pool.

Staff at Dylan’s care home suggested that I show Dylan the hotel website and include a photo of it on his programme. This seemed to go well. The pool, in particular, captured Dylan’s attention and was the thing he talked about on the run-up to the trip; when he pointed to the photo of the hotel on his programme, the words he said were ‘pool’ and ‘swim’ rather than ‘bed’ and ‘moon’. So I set off for Durham optimistically, fairly confident we had prepared Dylan for the change of routine.

On arrival it was clear that  Dylan had  understood we would not be staying at the Premier Inn; he didn’t protest at all when I made a right rather than a left turn on the walk from the railway station. I had put a note on the hotel booking to say I would be supporting my autistic son and if we could be allocated a twin room with a decent amount of space between the beds that would be appreciated. I had also said that if there was any way we could have a room with a river view that would be fantastic, but that space was the priority.

In my experience such requests are frequently ignored; I have often had to return to reception to ask for an alternative room.  As for adding a note about dietary requirements (I am vegan) I have wondered why I bother.  So I was amazed, on arrival at the hotel, to find that we had been upgraded to a family room (lots of space) overlooking the River Wear and that there was a jug of soya milk in the room.  Dylan seemed to enjoy the space and the view from the window!

Food is very important to Dylan and, happily, dinner and breakfast met with his approval.  Best of all, however, was the pool.  I hadn’t scheduled it on Dylan’s programme as I needed to check it was safe and that I could supervise alone. This is important because Dylan is a non-swimmer with high risk behaviour around water: in the past, he has leapt into water fully clothed, waded out of his depth  and plunged underwater, attempting to stay below.  Fortunately, the hotel pool turned out to be ideal (it did occur to me that had I found otherwise it would have been very difficult to say no):  fairly small, not deep and quiet.  We spent a lovely hour in the water before breakfast on Sunday morning, an excellent way to start the day.

I had assumed that staying at a different hotel would be challenging for Dylan and that it would be important to maintain his other routines while we were in Durham. However, breaking the Moon habit seemed to loosen Dylan’s patterns more generally. So instead of having lunch in our usual café on  Saturday we tried a different  place. I was thrilled; the vegan options were much better and Dylan caught the spirit of adventure and had a Panini.  I am guessing this was a positive experience because he accepted a different café again the next day.

Dylan was also open to taking different routes around Durham,  changing the order in which we did some of his favourite things and trying new activities. So on this trip we walked further down the river path than we had previously and discovered Old Durham Gardens. Further on, we happened on a pub – this was just what we needed after a long walk on a sunny Saturday. Dylan enjoyed it so much I suspect future trips to Durham might involve a walk to the Rose Tree 🙂  Then, on the rainy Sunday, we looked around exhibitions at the Cathedral  and Palace Green Library, something we hadn’t done previously. Again, this was a great success with Dylan’s interest captured by the acoustics of the Great Kitchen and a collection of skulls and bones.

I will be interested to see if Dylan builds some of these places into a revised repertoire next time we are in Durham. Another visit might not involve the same hotel – although we got a good deal on the booking it was more expensive than usual and I don’t want Dylan to grow too accustomed to such facilities 🙂  However, I now have the confidence to try something different again if need be.

 

 

Dylan at the window

Dylan gazing at our hotel from the other side of the river.

Dylan’s favourite weir

The sanctuary knocker

Durham Old Gardens

 

What have I learned from this experience?  That Dylan’s ‘routines’ are partly maintained and constructed by me.  Once he has enjoyed something, I tend to let him repeat the experience as it gives him pleasure.  This becomes a pattern that is familiar and dependable and which Dylan starts to recognise. However, he is dependent on me breaking these patterns as well as creating them and I should perhaps be more proactive in suggesting changes to routines. The memory of Dylan smiling and laughing on the train home should help me not to forget this 🙂

 

The Humber Bridge

Before I had my own family I used to say that for every child I gave birth to I would adopt another. This seemed a small but realistic way of balancing the desire to have a biological child with the desperate need of already-born children for a family.

After Dylan was diagnosed I gave up my pledge; with an autistic child to care for, I told myself, it wouldn’t be fair and, anyway, I probably wouldn’t be approved to adopt. Later, other promises would be adjusted. I couldn’t, I realised, volunteer regularly or even for Crisis at Christmas; Dylan needed me and it wasn’t possible to undertake such commitments with him in tow. So I made donations to charity instead; I might not be able to give my time but I could at least do this.

*

‘I’m thinking of volunteering’ I said to my daughter the other day. Just weeks since Dylan’s residential placement had been approved and already the idea had risen to the top of my newly-shuffled priority pack. ‘Good’, she said, ‘I’m glad to hear it’. My daughter understood the new imperative; not just my earlier idealism but the desire, now that Dylan is receiving help from society, to give something back.

I’m not sure the job I do has given me many useful skills but I’m hoping that I acquired some from my years supporting Dylan. At the moment I’m open-minded about what I might offer but am drawn to end-of-life care. The only thing I would rule out right now is autism. ‘I need a break ‘ I told my daughter. But it’s not just that. If I volunteered my time to autism I might as well be with Dylan. It has to be something different; a bit like a collective where you trade and exchange.

*

I remember making the case for collective child rearing in an undergraduate seminar in the early 80s. I can’t imagine how we got on to the topic but perhaps the discussion arose from the study of a political thinker. Rousseau maybe or Dewey. I’m not sure. What I do remember, though, is that I was a lone voice that day. After arguing valiantly but without effect I turned to Dr Robinson and appealed for his support against my peers. But he wouldn’t give it; having children, he told me, was not motivated by a will to improve society but by the desire to perpetuate the self.

I understood this a little better once I’d had my own children. Perhaps having an autistic child added to my growing realisation that families are private entities, managing themselves according to their own value systems. An autism diagnosis forces us to confront aspects of our practice which might previously have run humdrum and unexamined. I found myself weighing the cost and benefit of every decision: whether to be relaxed about diet or intervene; how to manage meltdowns; when to use directive approaches and when to be non-directive. Sure there was professional advice for parents but ultimately the choices were my own; there is thus no less variation in how autistic children are raised than in that found across all families.

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For some parents the desire to raise a family without interference from the outside world is strong. I suspect there are different reasons for this: the parents whose own upbringing was so troubled they want to do things differently, their own way; or the mother who has so little power over her life she wants control of the way her children are raised at least. I once knew someone like this. I wasn’t close to him (he was the husband of a friend) so didn’t have a context for his parenting except that it was NYC in the early 90s. Every morning he would take the bus from their Central Park apartment and head downtown with the baby. Why is it, he asked me when I visited, that people think it’s OK to interfere in your life when you have a baby? A private man, he was not enjoying the way fatherhood had turned him into public property; strangers, he complained, would stop to talk at and even touch his son. These unsolicited approaches were a source of great irritation to him.

I remember him telling me how the baby had been crying one day while they were riding the bus. A woman seated behind started to dispense advice. He needed to take the baby out of the sling. He should give the baby a pacifier. That baby needed to get into a routine. Suddenly, he told me, he’d had enough. He took out a pad of paper and a pen and thrust them at the woman. Lady, would you write your name and telephone number down here for me ? Because the next time my son’s crying at 3am in the morning I’d like to call you up and ask your advice. He reported this with glee, happy he had found a way to tell this member of the public to butt out of his life.

*

To make a call for help at 3am in the night you have to be desperate and my friends were not – they were simply new parents dealing with the usual demands of a not-unusually unsettled baby. A desperate night is one when you are scraping poo off the walls yet again (I haven’t done that for years but will never forget when I had to, repeatedly). It is when you have lain next to your screaming child for five hours and they are still screaming. It is when you fall down the stairs because you are dog-tired from weeks of being up all night. It is when you drive 100 miles in darkness trying to settle your crying child. It is when you sit in the garden or barricade yourself in your room because you fear you will be hurt by your anxious son whose needs you have failed to understand well enough to help and who is in meltdown, a danger to you and to himself. It is when the house finally falls silent and you go to bed and cry yourself to sleep because you couldn’t be better or make a difference. It is when you stay up all night googling for answers or writing long letters, asking for help, which you know you will never send.

These are just some of the ways to become desperate in the night. There are others (some harder). I’ve heard parents of autistic children say that you only get help when you get desperate. I’ve said it too. It’s right, of course, that scarce resources should go to those in most need but it scares me (I mean it really did scare me) that the trigger for allocation is a crisis.

Some years ago Dylan and I went for a walk one summer with two autistic boys and their mothers. I had been invited by the woman whose child’s 12th birthday we were celebrating but didn’t know the other mother. Still, we talked the same easy language that parents of autistic children tend to when they are together. At some point we swapped stories about autism services within our Local Authority. They just don’t seem to hear, the mother I had just met complained. They don’t listen because they think I’m coping. But I can guarantee that if I go within 50 miles of the Humber Bridge they’ll listen.

We didn’t have to ask her to explain.

*
The Humber Bridge is a beautiful bridge over a wide river in the east of the county where I live. But in 2006 the way I would think and feel about that bridge changed forever when a mother and her autistic son climbed over the railings and down onto the underbelly of the bridge and jumped.

Alison Davies and her 12 year old son Ryan were caught on CCTV camera moments before they fell 100 feet to their deaths on Easter Day. The Humber is a tidal river with sands which shift so dramatically it has to be re-charted each week. In such conditions, finding Alison and Ryan was difficult. It was four days before Ryan’s body was discovered, upstream of the bridge, and it would be some time before his mother’s body was found. In the days after the tragedy, while the police waited for the river currents to surrender Alison, the media speculated on what had led her to the bridge.

CCTV footage had recorded the pair arriving, smiling, at Hull railway station in the morning. They no longer lived in the town but, we would learn later, it was a place where they had once been happy. There were reports of an interrupted 999 call having been made from Alison’s mobile phone moments before a camera on the bridge recorded them falling – not together but 8 seconds apart.

We will never really know what happened that day or why. The tragedy was, commentators agreed, a result of the strain Alison was under as a single mother of an autistic child (Ryan’s diagnosis was Fragile X Syndrome). The Independent reported that the closure of a parents group had represented a significant loss to Alison who had no other support mechanisms apart from limited help from her mother. A friend of Alison’s, also the carer of disabled children, said: “She just didn’t get the help she needed. You have to fight for everything when you are looking after children with disabilities because if you don’t fight for it, you don’t get it.”

And yet, it seemed, in the days before the tragedy Alison had been feeling quite positive. She had started a new job, passed her driving test and was tackling some DIY projects at home – challenging for anyone, never mind a single parent with caring responsibilities. The picture which emerges from neighbours is of a well-liked mother and son with an active and happy life. As the newspapers later reported, however, this was a veneer; Alison Davies was, in reality, struggling to care for her son.

*
Sadly there have been similar cases, often involving mothers who had appeared to be coping. I have listened to people express astonishment at such tragedies and suggest that had they only known they would have helped. I remember reading a request by one woman, in the aftermath of a similar case in America, that mothers bring their autistic children to her, rather than kill them, ‘in the middle of the night if need be’. 

So we are back to that call at 3am (the one my friend’s husband threatened the woman on the bus with). Such night calls may not be easy to receive but they are even harder to make in a society which does not encourage collective responsibility for parenting. And if you are a family in crisis there is a tipping point beyond which it becomes hard to even pick up a phone; holding on to any sense of your own agency, or a belief in the power of others to help, is difficult when you are at the bottom. In a note which Alison Davies left she referred to having failed as a mother and of the need to ‘end the pain’. She didn’t want her family to ‘have to worry any more’ about her and Ryan. ‘Clearly Alison was in distress’, a police investigator observed: ‘clearly she felt a burden and clearly she felt that she wanted to relieve her family of that burden’.

I recognise some of these feelings: doubting you will ever get the help you need; not wanting to ask for it; feeling helpless; wondering if your child might be better off without you; the impossibility of life alone. When you do your best and it doesn’t seem to make a positive difference to your child you can question whether there is anything anyone can do. You are the mother. You love your child more than anyone else in the world will. If you can’t help, who can? These feelings are natural and some may even be necessary. But if they combine in a particular way on a particularly bleak day or night, their impact can be devastating.

*

Later, in August, the coroner would refer to Alison Davies’ ‘life of despair’. Although she was struggling to cope with her son’s increasingly violent attacks, Alison was determined that Ryan should not be taken into care. ‘She loved Ryan so much and she tried so hard; her bank of resilience had been depleted ‘, her family said in a statement following the inquest. Alison was, they added, ‘a wonderful mother’.

It emerged that Alison had a history of depression and suicidal tendencies which made her and Ryan particularly vulnerable. Her family had intervened to help the mother and son on previous occasions. The call from Alison’s mobile phone had, apparently, been made 30 minutes before the tragedy but was not effectively followed-up. The inquest was told that Ryan was not pushed but jumped independently; it was noted however that Ryan had no understanding of danger and would have jumped, with encouragement, if told he could fly. The second person falling from the bridge was Alison. The coroner recorded a verdict of suicide on her and a verdict of unlawful killing on Ryan.

During media reporting of the tragedy and inquest there were frequent references to other such cases, no less tragic. The Guardian reported that the incident had led to calls ‘for more respite care for families with autistic members’. The Independent, meanwhile, quoted a National Autistic Society spokesperson as saying that: ‘if one good thing comes out of the tragedy it is an awareness of the lack of support for respite care. Local Authorities are reluctant to pay for support.’ Other newspapers reported sympathetic interviews with parents of autistic children, explaining some of the stresses of living with autism and the benefits of regular respite care.

I would hazard that every one of these tragic cases could have been averted had there been a timely response to the family’s need before they reached the tipping point. For an autistic child to be safe and to flourish, the family that provides care also needs to be well. Parenting an autistic child can become more challenging with adolescence and adulthood but instead of increasing with age, support falls away. Is it any wonder that parents are pushed to breaking point, especially if they have few support networks or are battling an existing mental health condition? I’m one of the lucky ones. I’ve got support. But I would be lying if I said that I’d never, sometimes, tried to think of places where Dylan and I had been happy.

*

In the US, where there have been similar cases, there has been much discussion in the press and much condemnation of the mothers on social media. I understand this response but worry that a backlash against individuals obscures the spotlight from shining, as I believe it must, on all of us. I am not questioning that Ryan was unlawfully killed. Nor am I suggesting that Alison’s actions could ever be justified or excused. I do believe, however, that we are all involved in these tragic deaths because, in a civilized society, caring for vulnerable children and adults is a responsibility we share.

While it is not natural or intuitive for us to adopt a collective approach to parenting, we need to be better at offering and receiving support. Alison Davies seems not to have found this easy – certainly she was reluctant to let others care for her son. And who can blame her? There are so many awful reports of care standards that it is hard for parents to trust their children to others. But instead of closing down specialist services because they have failed in the past, we should be improving them. If we put our energy into achieving excellence in the care system, with effective mechanisms for supporting families before they are in crisis (without creating a sense of failure or fear in parents that they are letting down their child) then we might help avert at least some of these tragedies.

The more individualistic a society, the less likely it is that the vulnerable will survive; certainly Dylan’s disability means he will only ever flourish in a society that prioritises social care. If we are to emphasise the importance of human flourishing, rather than human capital, we have to develop more cooperative and community-based approaches to supporting one another. With so much concern about our ability to meet the cost of an increasing care sector, developing sustainable models of support has to be a priority. I would hazard that those who receive support from others, offer it in return. Hopefully, as I adjust to no longer being a full time carer, my own life will bear this out.

*

Disturbed by the tragic case of Alison and Ryan Davies, I kept news reports of these and similar stories determined that one day I would write something. I haven’t got around to the poem I thought I might write but let this stand, instead, as my small wreath. RIP.

Acknowledgements:

I have had these images of the Humber Bridge on my PC for years. I’m unsure of the sources now but hopefully they are from public domain sites such as Wikipedia.  In this post I refer to media cuttings of the incident (April 2006) and the inquest (August 2006) from The Independent, The Guardian, The Mail Online and the BBC.

The Last Lap And The Car Wash

I think this might be the last lap. At least I hope so: I’m not sure I have any reserves left for what has been a two year marathon. Since Dylan left school it has been a frustrating time of dead ends and disappointments. I have coped this far but am exhausted; if the finishing post moves one more time I doubt I could manage another lap.

I’ve been enjoying writing some general pieces about living with autism recently. Such reflections keep my eyes on the skies instead of on the grubbing detail of the road. With things in the balance this week, however, I thought it a good time to record what is hopefully the last bit of the circuit. Who knows whether these reflections will indeed turn out to be my log from the home strait but hopefully they will be illuminating.

Replay

If you’ve been following Dylan’s story then you might recall that my original battle, after he left school, was to secure continuing education. Dylan had been happy at school and was a settled young man, calm and with no ‘behaviours’ other than a liking for letting off fire extinguishers and smashing light bulbs. Initially Dylan wasn’t provided with any post-19 education and the social care funding he was offered for day care wasn’t sufficient to cover more than three days a week. When I won a legal challenge against my local council, Dylan was given a patchwork of provision while an appropriate education setting was developed in the city where we live.

For the year after he left school Dylan appeared to cope with part-time care which lacked consistency and routine and which wasn’t autism-specific. I reduced my working hours so that I could support Dylan as much as possible. It was messy and difficult. I felt stressed from one day to the next, wondering how I would juggle different settings and collection times and key workers. So it’s not surprising, really, that by the end of that first year Dylan started to show signs of distress.

The ‘challenging behaviours’ started last June. Some of my posts in the last year have described my search for explanations and answers. With incidents happening daily I took Dylan for neurological and psychological investigation, attended intensive support services, removed sugar from his diet, banned films with ‘separation narratives’ and asked for help from the ‘sex nurse’ (she probably has a different title but that’s how I recorded appointments with her in my diary). All these roads, it turned out, led to what was likely to be anxiety: the best we could do was increase the structure and consistency in Dylan’s care and adjust his activities.

In the last 12 months I have moved from utter disbelief at the changes in Dylan to a realisation that if you are severely autistic with severe learning disabilities and very few strategies for communication, and if your life changes profoundly so that things which you rely on to keep you comfortable – structure, routine, a calm environment and familiar people – suddenly disappear (as happened when Dylan left school) – well, it isn’t surprising is it? Anxiety can provoke feelings of frustration and anger in any of us. In the context of Dylan’s disabilities, his anxiety must some days feel scary indeed.

U-turns, false starts and golden gates

Unfortunately for Dylan the changes in his behaviour triggered further changes. Although one care setting has provided on-going support, other providers (including Dylan’s respite setting) felt unable to, given the changes in Dylan’s behaviour. Following a separate battle for funding, I had finally secured health care support for Dylan; the challenge, however, was to identify a setting with the necessary expertise to care for him.

A number of my recent posts have described the agony and confusion of trying to choose somewhere to live for an adult with Dylan’s profile of need. There are few such settings. Where they exist they are rarely local. Because of their specification (generous space, adapted buildings, small groups, high staff ratios and individualised programmes) they tend to be expensive. Factoring in economic and practical considerations as well as the desire to keep Dylan nearby, it is not surprising that finding somewhere for Dylan would be so difficult.

And then there are the curved balls that can come spinning. I have described elsewhere the way I pulled a u-turn when I lost my confidence (and my bearings) for a setting which Dylan was due to move into after Christmas. It was brave but possibly foolhardy, I was told, to pull out of a perfectly good placement. So I was relieved to quickly find a replacement which seemed just as good and was closer to home. As I recorded subsequently, however, the plan for Dylan to move there after Easter had to be abandoned following a safeguarding issue. I had let myself believe in that placement; getting a phone call to say we would have to abandon felt like a false start (or finish).

I hardly dare write that I think I can finally see Golden Gates glinting up ahead. Like other writers I observe the rule of not talking about a poem until I’ve written it in case I lose the magic. Perhaps I’ll apply the same rule to Golden Gates so as not to break the spell. Besides, even if there is a gilded tomorrow, today there is still this view from the road.

The road

It’s not an easy road to be on if you are in crisis. Even when a setting has been identified the process of assessment and transition takes time. Something that has made these months particularly hard is the loss of Dylan’s respite. At the point at which I was in need of more support I got less. In fact I got nothing. I have written elsewhere about the contribution which respite plays to the lives of carers; having been without it for nearly six months I can confirm this support is vital.

My last night off was 18th December. Since then I have been on duty every weekday from 4pm to 9am and every weekend from 4pm on Friday to 9am on Monday. I have not had a break during this time; I have not been able to go out or even, given Dylan’s anxiety, to have visitors. This period, of course, includes Christmas and other public holidays and celebrations. As well as having an impact on my ability to work (during this time I have had to reduce my hours and resign a management role) I have been obliged to turn down opportunities to perform at events (as a poet) and to attend social activities.

I don’t mean to sound complaining. I’m not. I accept all of the above as the price of caring for someone who is my responsibility and my world. But to be a carer I need to stay well and healthy which means being able to rest and recuperate. I haven’t been able to do that; I’ve found that trying to rest during the day is no replacement for the benefits which come from having a break from caring overnight. For me they are these: not having to bathe and put Dylan to bed in the evening then stay awake until he is settled; not having to be alert through the night in case I am needed; not having to get up early enough to juggle my own self care with waking Dylan in time to bathe and shave [I often skip this stage in truth – I have a lot of sympathy with men on this one] and dress and feed him before it is time for his bus; not having to pace the house waiting for the bus and willing it to arrive in time for me to get to work.

Gardens, mud and dirt

Dylan’s anxiety has been acute in the last few weeks and his aggressive behaviour has escalated. I have gone on trying to identify triggers but can’t always predict or head off incidents. I am no match for Dylan physically (21 and more than six foot tall, fit and strong) and after being hurt on a number of occasions I have learned to prioritise keeping myself safe. Recently, I have spent a lot of time in the garden where I go, now, to sit and wait until Dylan has calmed down. Sometimes it is five minutes, sometimes 50. Sometimes I am barefoot, sometimes better prepared. Sometimes it is fine, sometimes raining. Sometimes it is light, sometimes dark. Always I wait with my heart in my mouth for it to be over, praying that Dylan doesn’t hurt himself.

I am better at keeping myself safe than I was; I have learned to make judgements about when I can intervene safely and when I can’t. I have agreed strategies with Dylan’s social worker such as keeping my mobile phone with me and when to call for help (I haven’t so far). Clearly it would be better if Dylan could be helped not to feel so frustrated but for that he needs specialist care and support in an environment with the space he needs. I don’t believe, however, that there is a magic formula which will eradicate Dylan’s anxiety; I suspect he may be prone to it through these difficult early adult years. And because life with Dylan can be so unpredictable (and I must stress that it isn’t like this all the time – we have wonderful joy-filled days too) what he especially needs is more than me.

Dylan and I have always had an active life and I’ve continued these activities at weekends. He needs this: he’s a fit and active young man. With incidents happening increasingly often, however, I have recently found myself in compromising situations where I have been hurt or Dylan is at risk (sometimes both) away from home, in vulnerable locations or public space. Three times I have fallen in the last few weeks when trying to catch or restrain Dylan (without adequate training) in order to keep him safe. One incident a couple of weeks ago left me terrified by the combination of Dylan in violent meltdown, an unleashed dog (with slow-to-act owner), bleeding ear (mine) and fast approaching road.

I’m not sure why Dylan was out of control that day; we were in a familiar valley which we have walked many times. Dylan loves to be near water but it can sometimes lead him into a trance-like state which in turn triggers a violent outburst. This  may have been what happened on that Sunday afternoon walk. It was a wake-up call and a turning point for me; I managed to get Dylan back to the car, albeit muddy and bloody, and the next morning I phoned his social worker.

The car wash

It took quite a lot for me to admit that I couldn’t keep Dylan safe anymore. Some people have suggested that I might get more support with Dylan if I didn’t appear to cope so well. You appear too competent for your own good, one friend told me. Well I was perfectly happy to admit, now, that I wasn’t. I couldn’t manage weekends alone anymore, I told Dylan’s social worker. Neither Dylan nor I were safe. For Dylan’s well-being and my own safety, I said, if I can’t access some support at weekends then I shall just drive away. I shall leave. I could hardly believe what I heard my mouth say. I wasn’t even aware that I had thought it. I certainly wasn’t sure I could ever do it. But in the silence that followed my announcement, I thought that this must be how breaking point feels.

We explored various options in the aftermath of that incident but in the timescales it wasn’t possible to put together an acceptable alternative for the following weekend (i.e. last weekend). In the end, therefore, I decided to support Dylan myself but agreed that I wouldn’t  access the community with him and that I would put some simple procedures in place to stay safe at home. I approached last weekend with anxiety and trepidation. Fortunately the weather wasn’t remarkable – it’s easier to stay home, somehow, when it’s raining – and I hadn’t lost my creativity. Racking my head for an idea which bent but didn’t break the rules, I decided to take Dylan for a joy ride in the country and then to the car wash. The car wash would, I hoped, be enough to give Dylan the pleasure of running water but without the danger; it was what I judged a ‘contained risk’. Happily, Dylan seemed calm enough as he watched the water cascading down his rear window…

Postscript

I heard yesterday that some emergency respite for Dylan has been approved for this weekend. Dylan hasn’t had any since December mainly because we have struggled to find a provider who felt able to support Dylan given his needs. I’m pleased to say that the place I refer to in this post as Golden Gates are happy to have him. Dylan already knows the setting and the staff and residents and will have a lovely time I’m sure. I’m hoping that although this is emergency respite, it will be the start of what in time becomes transition. May the finishing post stay still long enough for me to guide Dylan through 🙂

Images:

The photographs of fire hydrants and of Dylan curled on one of our local paths were taken by me. They are images I particularly associate with anxiety and meltdown.

Staying Alive: autism and risk

In my last post I mentioned, as a postscript, that I had received ‘devastating news’ about Dylan’s proposed placement at a house I found following a moment of ‘magical thinking’. A visit to the house had gone well, as had a home assessment, and I had no reason to expect any hitches with Dylan’s referral. I was optimistic that we might be able to start transition during the Easter break so booked leave from work and cleared my diary. Imagine my alarm when, on the run-up to the holiday, I received an email to say there was a problem and that we would need to consider other options.

I felt broken: after the false hopes and halted starts, the dead ends and aborted plans, here we were again. I could have cried. Oddly, my first concern was short term rather than long. I have been managing without short breaks since mid-December when Dylan’s provider decided they could no longer support him. I struggled to find a replacement setting and in the end gave up, thinking that as Dylan was set to move into a residential placement it would be confusing to introduce somewhere new for such a short period. I would manage without, I said.

It has been hard, though, managing without. I used to look forward to my night ‘off’. I have missed being able to work late, swim, go to the cinema or out for a meal once a week. I have missed having the house to myself overnight and being able to go to bed when I want and go out in the morning without having to bathe and dress and feed Dylan first. I hadn’t realised just how much I had missed this, and how in need of a night off I was, until I read that email. So while I felt weary at the thought of continuing the search for residential provision, it was the realisation that there would be no early solution to my need for a night off which caused the devastation.

Evaluating risk

Still, I didn’t cry. I was stoical, this time, not out of heroism or resignation but because the setback wasn’t due to funding problems but rather to ‘concerns about standards of care’. This puts an entirely different complexion on disappointment; parents may be in need of a night off, and young adults in need of a home, but not enough to compromise on safety. So the part of me which was disappointed at the news was outweighed by the part which was relieved. Happily Dylan had not been there; he was still safe with me.

But after this disappointment and relief the news settled down differently. I couldn’t make any judgements about the situation, I decided, without more information. Whatever had or had not happened, I reflected, may or may not have been a risk to Dylan had he been living there. All sorts of things get tangled up in safeguarding policy; clearly (oh so clearly) we need the legislation, but we also need to understand its application. So although my first reaction was to abandon all thoughts of the house as a future placement for Dylan, I later found myself drawing comparisons (albeit tangential) with my own experience.

I recently prepared two groups of students for their annual school placement. The administrative team responsible for sourcing and supporting these placements do a tremendous job; many of our partnership schools have been with us for decades and only rarely do we ‘lose’ an organisation. We are, however, obliged to stop placing students at a school if it goes into ‘Special Measures’ as a result of an unsatisfactory inspection. There are a variety of reasons for a school being placed in Special Measures, not all of which are relevant to the quality of support a school can provide to students. It has been suggested, in fact, that it is in schools facing the toughest challenges that the best support can sometimes be found.

This was certainly my experience in the 1980s when I was training to teach. One of my lecturers planted the idea that I might like to do my block placement in a local school with a reputation for being ‘difficult’; if i could manage that, he said, I could handle anything. I liked the idea so (to my peer group’s surprise) I requested the school. What I discovered through this was that I could cope with the challenge thanks to the tremendous support I received from staff. Later I would reflect that if such collegiality and support were important to me, organisations judged ‘satisfactory’ (especially schools which were coasting) might be best avoided.

While I wouldn’t want to suggest a direct comparison between schools and residential homes, what these reflections reminded me of was the need not to write-off an organisation too hastily. Is root and branch change required? I asked Dylan’s social worker when I’d reflected on the situation overnight. Or was it an isolated incident? Would whatever is wrong make Dylan directly vulnerable? And how long will it take to put right? A week? Six months? Or years?

Transforming risk

These questions matter because it will take months for me to start over; the process of identifying a provider, visiting, arranging assessments, submitting reports, getting the paperwork approved and planning for transition is time-consuming. Perhaps, I suggested to Dylan’s social worker, it would take as long to find an alternative as to wait while any issues were addressed? Especially as an alternative provider would almost certainly mean Dylan moving further away from home (something I had just lost my nerve about in relation to a previous provider). Perhaps you’d consider reinstating that placement? Dylan’s social worker suggested. My magical thinking, it seemed, was being magicked away.

Wouldn’t it better to work with the setting rather than walk away? I asked. And might it not be the case that a place is safest when a ‘problem’ has been identified? My questions reminded me of an incident years before, related not to social care or education but to air travel. It was 1987 and I was flying to Tel-Aviv with a boyfriend. Postgraduate students at the time, we had managed to save enough money from our grants and jobs to fund a trip to the Middle East. We had selected dates to fit in with our studies and the temperature but it had escaped our notice that we were travelling on the eve of Rosh Hashanah; we arrived at the airport to find our flight busy with people heading home for the holiday.

My boyfriend was not a seasoned traveller; this would be his first flight (apart from the plane he came to England on as a child) and he was nervous. Other people waiting for the flight that evening were nervous too; so nervous, in fact, that one of them identified my boyfriend to security police as ‘behaving suspiciously’. My boyfriend was pulled out of the Departure Lounge, along with two other passengers, and  interrogated for several hours (as the only link between the ‘suspects’ was skin colour we later reflected this was a more likely explanation than behaviour). At some point that evening I was also taken and questioned; I had no idea what was going on or why they had taken my boyfriend so didn’t realise their only interest in me was whether my answers would corroborate his (which they did).

As well as being a horrible experience the incident caused anxiety. When the ‘suspicious’ passengers were finally released and the plane cleared for boarding I was reluctant to travel. I had no idea what information they were acting on, I told one of the special officers, but if there was a threat to the plane then one thing I knew for sure was that they’d questioned the wrong man: my boyfriend was no terrorist. How exactly, I asked him, do you expect me to get on that plane now? Lady, he replied, this will be the safest plane out of Heathrow tonight. Every item of luggage in the Hold had, apparently, been checked: they were confident that there was no threat. This lesson has stayed with me; the identification of risk can sometimes create a place of safety. At least every metaphorical item of luggage in the care home’s Hold is being checked right now, I told myself.

Staying alive

So for now the move is off. I’m on pause. Holding on. I’m not sure whether I will wait or look for somewhere else for Dylan. What is clear though is that I need a break so that I can rest and restore my energy before the long haul. Because whatever happens, it will take a while…

I tell myself that at least Dylan doesn’t have to suffer the ups and downs of the journey but that isn’t true; he picks up on my anxiety I’m sure. So after a more settled period there have been a few incidents this week. One evening my daughter intervened to ensure my safety during a particularly challenging episode. Afterwards, in response to my description of the incident, a friend urged: there is a safeguarding issue here – you are a vulnerable adult. I had never considered this; that the concept of ‘safeguarding’ could be applied in my interests as well as Dylan’s. Should I report my situation to the Care Quality Commission perhaps? Tell them that I am concerned about my ability to deal adequately with challenging behaviour? That I am not sure I can ensure the safety of the adult in my care and of myself and daughter? Perhaps they could come and inspect me? Check the baggage in my Hold?

Social care in England is in crisis with a shortage of places for vulnerable adults and a lack of funding for the recruitment, training and retention of staff in those that exist. That creates risk. But it is also a risk to leave parents unsupported. I am relatively fortunate: I am fit, experienced and confident (mostly) when dealing with Dylan. But I am also weary and ageing. ‘We’re scared to die’ an acquaintance said to me recently, referring to he and his wife’s concern about leaving their adult son alone and unsupported. I recognised his anxiety and later in the week mentioned it to another adult carer. She nodded. Yes, she said. I am completely risk-averse now. I need to stay alive.

Images:
The photos were taken in 1987 on our return flight to London from Cairo. They include views of Cairo, the French Alps, Greece and Schipol airport. The journey was quiet and uneventful.

From Cornerstone To Coping Stone: re-thinking short break provision

I intended to follow last week’s post on the benefits of short break provision with some reflections on the challenges. I could never have predicted how relevant this would turn out to be; Dylan’s short break provider decided this week that they can no longer support him given his level of need. Instead of reflecting on challenge from a place of stability I am therefore in a place of uncertainty; this will inevitably influence the tone (and ending) of this post. A week is a long time in a carer’s life…

Coping with the luck of the draw

The approach to allocating short breaks to families varies across Local Authorities but generally such provision is limited. In order to offer these more widely some Authorities earmark funding for one-off grants; these are welcome but it is regular breaks which can make the difference between a family coping and being in crisis.

Because access to regular short breaks is limited it is dependent on referrals from education or social care professionals. Dylan was first recommended for ‘respite’ by his primary head teacher; he would benefit from a 24 hour curriculum one day a week, she told us, while we caught up on sleep. Looking back I realise how lucky we were to have her support; there are plenty of families in the same situation who do not get referred. Access to short break provision is also, however, a postcode lottery; as well as being lucky to get the referral, we were fortunate that there happened to be a children’s respite home near to where we lived.

From age seven, therefore, Dylan was allocated a ‘standard care package’ (one overnight a week and one weekend in six) in a purpose-built home with a small peer group. When he turned 18 Dylan was no longer able to access short breaks through children’s services. This was a difficult transition for Dylan made worse by the fact it was out-of-synch with transition from full-time education the following year (I’ve written a little about this here). I had hoped to ease this process for Dylan by establishing a similar pattern of short breaks to the one he was used to (albeit in an adult setting) for his final year of schooling. If I could get this in place, I thought, the new short break provider could help support Dylan when the time came to leave school. Achieving continuity in provision, however, proved impossible; I didn’t know it at the time but we were at the start of a journey into crisis.

Crisis? What crisis?

As the time for Dylan to leave children’s services approached I became concerned by the lack of planning for transition. One morning, after numerous phone calls, I discovered why nothing was happening: Dylan no longer had a social worker. Why, I asked, did we not have a social worker? We had been de-allocated, I was told, because we were not considered to be a ‘family in crisis’. It’s flattering in a way, the man on the phone suggested. I can live without flattery, I told him, demanding that Dylan be re-allocated.

I soon discovered that ensuring Dylan’s short breaks continued would take more than a social worker. Ours wasn’t able to organise this, apparently. In my Authority the introduction of Personal Budgets and Direct Payments (about more of which in a future post) meant that Dylan would have to undergo a full assessment in order to ascertain what level of annual budget he was entitled to. I explained that Dylan didn’t need a budget; he was still at school and living at home with me. We only wanted one overnight break a week. The system, however, was inflexible; the only way Dylan could access short break provision was if I agreed to a full assessment.

This was not the end of it. Once the assessment had been completed and a budget calculated I was told I had to draw up a Support Plan (about more of which in a future post). I assumed that social workers would advise on and recommend potential care providers but this was, apparently, no longer part of their role in my Authority. Instead, families were required to hire a Support Planner (and pay for this out of their disabled child’s already inadequate budget). I explained (again) that I didn’t need care services for Dylan as he was still at school and living at home; I only needed one overnight break a week. I would still have to submit a plan, I was told, showing how I would use the budget. But I wouldn’t be using the full budget, I pointed out. How much of it, I asked, could I spend on overnight breaks? There was no clear answer to this.

In time there were no answers at all; it was the summer holiday so people were on leave. Dylan and I were still without access to short breaks and feeling the strain. Not only did I not have an overnight break from caring once a week, I didn’t have any time off during the day either. I was on 24/7 duty and close to breaking point. I think I had been aware that Dylan’s short break provision was valuable  – certainly I made full use of the space it offered to focus on other aspects of my life. I’m not sure, however, that I realised quite how essential the support was in enabling me to cope. Now, having been de-allocated because we were judged not to be in crisis, that is exactly where we had ended up.

The gap

Our descent into crisis took just four months. Not only did the professionals not realise this could happen, they failed to grasp that when a family are coping it may be because they are receiving support which enables them to cope. Removing support in the belief it is no longer needed can cause a house of cards to tumble.

The gap in short break provision had a significant impact on Dylan as well as me. While nothing could have taken away the sadness Dylan felt at having to leave his respite home, he may have understood the process better had there been something to replace it with. Appropriate transitional support would have enabled staff from the home to accompany Dylan on visits to a new provider and help him to settle in. Not only did this not happen, the gap in services meant that a routine which Dylan had followed for over a decade broke down. Two years later Dylan has not recovered from this badly-managed transition and still carries around a photo album recording his time at the home  (I’ve used some photos of it to illustrate this post).

Although the gap in Dylan’s provision was caused by the inadequacy of transition services, the situation was compounded by a lack of appropriate providers of short breaks for adults in my Local Authority. While a key purpose of provision is to provide support for me, it is equally important that the experience is valuable for Dylan. The children’s sector had offered Dylan a relevant peer group, a range of adults (including male role models) and access to space, resources and activities which aren’t available in the family home. Because these were factors which had proved so successful for Dylan, I looked for them within the adult sector when trying to identify a new short break provider.

It soon became clear, however, that the model in the adult sector was independent living (where service users are placed singly or sometimes in pairs within regular residential accommodation). While this may be appropriate for some young adults, Dylan’s needs hadn’t altered; he still required a setting which gave him lots of space to burn off energy and which could provide the resources and activities from which he benefitted. This was not something that was available, however, at least not within my Authority or Dylan’s budget. At the end of the summer, five months after Dylan had turned 18, an amount which could be spent on short breaks had finally been agreed and a new short break provider identified. The new provider was based on the ‘independent living model’ rather than the residential home setting my instinct told me Dylan needed but, I told myself, perhaps he would cope.

A fresh crisis

While Dylan’s overall budget was far more than he needed for one night a week I was uncomfortably aware that it wouldn’t be adequate once he left school. Dylan was settling in with his new short break provider when the social worker confirmed that his budget wouldn’t cover overnight breaks as well as full time day care.

What do I do? I wailed to the social worker one day. I don’t know what to do about this.

Which is more important to you? she asked. You need to choose.

I haven’t got a choice I pointed out. If I can’t get to work I can’t pay the mortgage.

Well then you’ll have to lose the respite.

But we will collapse, I said. I can’t manage without it.

Then you’ll have to get into crisis. If you get into crisis then we might be able to go back and ask for more money.

Another gap

I couldn’t understand how moving from school to adult services meant Dylan would have to give up his short breaks – surely these needed to start increasing, if anything? Without short breaks, I explained to the social worker, I couldn’t manage; using all Dylan’s budget on day care so I could get to work would leave me exhausted. If that happened, I wouldn’t be able to take care of Dylan.

The economic arguments seemed to me to be obvious. With a small amount of extra support (for one night a week) I would be able to continue to look after Dylan at home. Without this support, I would not be able to cope and Dylan would have to be cared for by the Local Authority. Not only was this not in Dylan’s best interests it didn’t make economic sense to allow such a situation to develop; caring for Dylan full-time would cost the Local Authority four times the amount needed to enable him to stay at home. Parents who care for adults do this without any financial support; we are a hidden workforce. How short-sighted it seemed to me for the Local Authority not to support me to continue to care.

After I had exhausted all possible avenues I consulted a solicitor; I will share details of the legal action which provided a way forward (my original reason for setting up this blog) in a separate post. For the last year I have been living in a gap in the crisis: Dylan has been on an interim budget with a temporary Support Plan which combines some day and some short break provision. This has allowed me to get to work and enabled us to cope while negotiations about Dylan’s longer term care continue. However this week the gap in the crisis became another gap in provision.

Cornerstones and coping stones

Dylan has been accessing short breaks with his adult sector provider for nearly two years; although the placement has now broken down it at least provided a period of stability during Dylan’s transition from school. I am sorry that it hasn’t worked but my reservations about the suitability of the provision had remained and all the issues which could have been predicted (lack of peer group, lack of space, lack of staffing) did indeed emerge. Yesterday, I bumped into a friend (also the parent of a young man with autism); I have to believe, I told him, that I will find something better for Dylan – that this will lead to something good.

I don’t think this is about being positive so much as needing to be strong through the setbacks. Some years ago I received a gift which included a jokey list of personal attributes. One of them was ‘good in a crisis’ which I remember made me laugh. Oh but it’s true, my daughter said: you are good in a crisis. I dismissed it at the time but this week I’ve drawn strength from that thought, steeling myself for what could be more difficult days ahead. Sometimes I visualise myself as a cornerstone, holding and supporting Dylan. This week I’ve had the metaphor of a coping stone in my head instead: how it goes on last, as the final piece, and how, once in place, it protects foundations and walls, channelling away the rain. Short break provision is critical enough, for some of us, to be at the heart of our ability to cope: when it goes wrong it can shake us to our foundations but when we get it right it is our coping stone.

The need to re-think

While short breaks may work well for some families and in some parts of the country, the approach to provision needs re-thinking, particularly for children and adults with high needs. It isn’t acceptable for families to have to get into crisis in order to receive the resources they need. Some things which would help include:

• more transparent and equitable referral systems
• simple transition points with more effective  support for autistic children and adults
• simple alternative systems for families seeking temporary support
• more proactive support from social workers
• more variety in the type of short break provision available for adults (including residential homes)

Short breaks enable some parents to go on caring for their autistic child into adulthood – extra investment in this provision would surely be money well spent.

Related Posts:

• Respite Or Short Break: what does it matter?
• Autism, Blackbirds, Resilience
• The Numbers Game: advocating for Dylan

Respite Or Short Break: what does it matter?

If someone were to ask what single thing makes the most difference to my life without hesitation I would say respite. Well actually I might hesitate a bit but only over terminology: there has been a move in the last few years away from the term respite, which is felt to have negative connotations, in favour of short break.

Whatever we call it I’m very glad of it. For some years Dylan has spent one night a week and occasional weekends with a care provider. Recently I decided that it was time to trial a slightly longer period away from home. Last week, therefore, Dylan had five sleepovers while I had my first significant break from caring in 20 years. In this post I reflect on the value of short breaks for carers while in a linked post I consider some of the challenges involved in accessing short break provision.

What we mean when we talk about respite short breaks

I didn’t know about this shift in terminology when my local Council awarded families with a disabled child a one-off short break payment last year. As far as I was concerned a ‘short break’ was something I had with Dylan whereas ‘respite’ was something I had alone; one was a break from our daily life and the other was a break from each other.

Surprised by the payment but pleased to receive it I provided details, as requested, of what I would do with the grant: I would take Dylan to Knaresborough to see Mother Shipton’s Cave and for a trip by steam train. We had a lovely time but a man from the Council later explained to me that the short break payments were aimed at carers, not the person with the disability. That money was for you he told me, barely hiding his amusement: it was for you to have a break, not Dylan.

I understand the reason for the change in language; the word ‘respite’ problematises the disabled person by suggesting that the carer requires space from a burdensome situation. It also implies that the benefits are only for the carer. Neither of these are the case. ‘Short break’ may be more neutral but it is also unsatisfactory because it doesn’t indicate what the break is from. In the absence of an alternative, however, I will use the term short break here to refer to breaks for carers from which the disabled person also benefits.

Spending time

I know families who don’t feel the need for short break provision. In some cases this is because they already have access to informal support from relatives and sometimes it is because parents don’t want to be away from their child. For other families, however, short breaks are invaluable; in my case they have enabled me to continue to care for Dylan at home.

When I first became a single parent Dylan’s overnight breaks were essential as I taught an evening class; while my mother was able to look after my daughter, caring for both children became increasingly difficult. In time I was able to reorganise my teaching so that I no longer worked outside school hours though I continued to use Dylan’s short breaks to meet workplace demands at certain times of year. For some families, then, short break provision enables employment.

Maintaining a job or career is not just about financial independence; it also contributes to my sense of self. In this way, short breaks help to nourish the parts of my identity which are not solely about being a carer. They also provide space for my identity as the parent of a non-disabled child; while my daughter lived with us she had first claim on this time. Enabling parents to give siblings the attention they need is perhaps one of the key benefits of short break provision.

When time away from caring is limited it encourages careful reflection on priorities. I have always liked to spend short breaks doing things which Dylan has no interest in (I suppose this removes any guilt that he is being excluded from something he would enjoy) which would typically involve the arts or sports. There is a tendency, when time is limited, to make every minute count. This can create its own stress however: I am often exhausted when Dylan returns home, having rushed back from somewhere myself (during weekend breaks I have made regular trips to London and even Paris). I can also feel frustrated at ‘wasted’ time; tolerance for a bad movie is low when doing that meant not doing something else. Recently I’ve discovered that one of the best ways of spending time is to simply stay home and enjoy the space (a sign, no doubt, that I’m getting old).

Learning to let go

I remember how reluctant I was, initially, to accept short break provision. For parents, such support can feel like an admission of failure or an abnegation of responsibility. It can also provoke feelings of guilt as well as anxiety about whether your child is being cared for as you would want. My conversations with other parents lead me to believe this is entirely natural and part of the process of learning to let go of a child who has additional needs.

Although I know that Dylan and I benefit from short breaks the wrench at separation never ends. A single night, or even a weekend, is not long enough to switch off the alert of the carer brain. If I dose off on the sofa in the evening I wake with a start, my first thought where is Dylan? then the panic that I’ve slipped asleep while he is still awake and the race upstairs to check on him. On short break nights, my second waking thought reminds me that I am alone in the house; I can relax. But this state of constant alert doesn’t subside. I live my life this way; antennae listening out through the night, in case he wakes and needs me. And as well as the fundamental caring of the brain there is the mother’s heart which, sensing an absence, aches its remembrance.

Recently I have realised that it is not only me who has had to learn to let go; Dylan also has to accept change. I wanted Dylan to spend a longer period away last week as part of what I hope will be a phased transition to him eventually leaving home. I don’t want this to happen yet but when the time comes I don’t want Dylan to move suddenly from living at home to living elsewhere. My aim, therefore, is to gradually increase Dylan’s overnight breaks so that the balance shifts away from me. Although I am not a fan of Personal Budgets I have to acknowledge that it is thanks to this system that I was able to organise such a break for Dylan. While the standard care package offered to children up to 18 is excellent it isn’t flexible in that you cannot change or save days in order to access short break provision at different times or for alternative periods. A Personal Budget can, however, be used to fund a longer break, providing it is approved as part of a Support Plan.

Making self matter

How long before I have no right to call myself a poet? I asked a friend recently. I haven’t managed to write anything new for months. It may be hard for me to consistently live this but writing poetry is the most important thing I do for me: it is the critical part of my identity. Writing poetry makes a difference to who I am – it is what matters. It is perhaps strange, then, that the description I gave of the things I spend my short break time doing doesn’t include writing poetry.

The reason I don’t use Dylan’s short breaks for writing poetry is that they are overnight breaks and I can only write in the mornings. If I work on a poem after 2pm I usually ruin it. Since keeping this blog I have discovered I can write prose later in the day, but the only thing I can do with a poem is a bit of editing if I’m lucky. As I’m at work or caring for Dylan in the mornings, getting any writing done means being up at dawn. So when Dylan’s short break provider agreed to support Dylan for a longer break I knew that what I wanted to do with the time, more than anything else, was write.

I would rent a cottage, I decided, within a two hour journey from home (so that I could get back easily if needed). I would choose the time and location to fit in with a poetry festival so that I could socialise if I wished. As the main aim was to write I would choose a quiet location. I would allow myself a laptop for typing up drafts but prose and social media were banned. And, at a girlfriend’s suggestion, I would take my bike.

Going solo

I don’t use my bike often because I am usually with Dylan who needs to ride tandem. Taking my bike to the cottage was not something I would have thought of if Caroline hadn’t planned to join me for an afternoon’s cycling while I was there. In the event it didn’t work out for us to meet up but I was enormously glad that we’d talked about it seriously enough for me to sort myself out with a bike rack and take my Tantrum with me.

It had been touch and go, though, whether I would even get to the cottage. On the morning of departure, not having packed or found a bike rack I was competent to fit, I temporarily lost confidence in the trip. I’d tried to prepare Dylan as best I could for what was to happen but as I put him on the bus for his day care centre that morning I could tell by a look in his eyes there had been a misunderstanding. Dylan had his trundle case with him as he was going to be away for longer. I suddenly realised that he had assumed that the suitcase meant we were going on holiday together as we had recently. Indeed, when I returned to the house I found that Dylan had put steam train leaflets on my desk. And so I burst into tears convinced I couldn’t leave him with such disappointment.

Later that morning I remembered that I had persisted with overnight breaks in the past when Dylan had been reluctant to go. I reminded myself that it wasn’t so surprising that Dylan would want to be with me; of course he would prefer an easy life with his indulgent mother or to be in his own space. This, I realised, reinforced the need to go ahead; Dylan would have to be independent from me one day and spending a longer period of time away from me now could help him to prepare emotionally. I ticked myself off for the suitcase mistake and went to look for a bike rack.

In praise of short longer breaks

South Cliffs, Bridlington

And so I set off for the Yorkshire coast on a sunny Wednesday, my bike strapped to the back of my car and my face puffy from crying. I was conscious of Dylan not being in his seat in the back. I found myself saying ‘Dylan would like that’ or ‘I wonder what Dylan is doing’. At some point though I put on a U2 CD which Dylan won’t let me play: may as well make the most of it.

When I stopped at a pub for a meal en route I automatically ordered for Dylan as well. Arriving at the cottage I felt a twinge of guilt when I saw that I had booked into Dylan’s dream world (sand, sea, barn owls and nearby swimming pool). As I chatted to the owner that evening about his autistic son (what were the odds on that I wondered?) I realised how impossible it was to stop being a carer; I might be off-duty but caring for Dylan was part of my identity and I couldn’t drive away from that. I had to hope the poet in me wasn’t easily lost either.

South Landing

The first night I did the dosing on the sofa thing – woke and sat bolt-upright trying to figure out whether I’d put Dylan to bed or not – but within 48 hours I’d managed to embrace the joy of pleasing myself. The moment I felt my freedom from responsibility came the next evening while cycling into the local village to post a letter. This might seem a small thing but slipping out to buy a pint of milk or catch the post is not something I would normally be able to do. I would have to take Dylan with me, which would involve interrupting his evening routine, getting him ready, explaining what was to happen and hoping that he would cope (such a brief outing would be  frustrating for Dylan). This is the sort of scenario that I would avoid by always planning ahead and ensuring that we have everything we need at home and I have done all urgent jobs. Cycling impromptu at nine o’clock at night to post a letter felt absolutely joyous.

Flamborough Old Lighthouse

Though the jewel in my week was undoubtedly the four hours uninterrupted writing each day, I discovered there was no end to the benefits of not caring. There were irregular meal times. Lane swimming. No Disney. Cherries to myself. Poem breaks during cycle trips. Waiting half an hour (quietly) for the barn owl to return from hunting. Leaving the cottage door unlocked. Having my papers spread all over the table (Dylan constantly tidies my desk). Lingering over coffee. Browsing antiques in the Georgian Tea Rooms. Sitting on the pier. Just sitting. Watching the gannets at Bempton Cliffs. Staying out late on the bike, into the evening, hungry and tired.

Towards the end of my week away I cycled down to the post box again. This envelope was addressed to Dylan at his short break home. I calculated it would just reach him before I got back. I’d never been away from Dylan long enough to send him something through the post. Was it silly of me? How would he know who the card was from? I chose a leaf-cutter ant. No one but me, I thought, knew that he liked them; surely he would understand the card was from mummy? As I dropped it in the post box I realised that Dylan had grown-up; he was at the start of his adult life. It felt like I was at the start of another life too, learning to let go.

 

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I returned home with a draft of a tricky poem I’ve been wanting to write for two years. As I drove back I told myself that I should be glad of this, even if I found things hadn’t gone so well for Dylan. I was delighted to find, however, that he had been fine; the trundle case, I was told, seemed to have helped him understand his short break would be for longer. Dylan seemed delighted to see me. I gave him the white chocolate footballer I had bought him and later, when he had unpacked, he showed me the card he had stood on his cupboard.

All images, including a selfie, taken by me.

Autism And Transitions: supporting Dylan through change and loss

The 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

Many 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 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.

When 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.

At 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.

However, 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.

At 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.

Finally, 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.