Family Lockdown: Dylan breaks the rules

In my last post I reflected on the challenge of caring for a vulnerable adult who lacks the capacity to understand  lockdown.  Dylan’s intellectual disability and autism mean that even in ‘normal’ times he engages in what could be considered socially inappropriate behaviour; in the context of a public health crisis, a lack of regard for social norms such as distancing can result in challenging rule breaks. In this post, I celebrate the fact that Dylan breaks the rules and rejoice in the unexpected places this can lead…

22nd March, 2020 (Mothering Sunday, UK, Ireland)

To tell this story I have to go back to Mother’s Day which this year fell on the Sunday after the start of lockdown. Dylan and I had been celebrating his 26th birthday in Durham the previous weekend but returned to the news that we were to stay at home other than to take exercise, shop for food, travel for essential work or provide care to vulnerable people. The trips and activities which had been scheduled for the week, and which Dylan was expecting to happen, could not go ahead.

While staff at Dylan’s home threw themselves into designing lockdown activities for the residents, I tried to think of alternative activities for the up-coming weekend. As I would be providing care to a vulnerable person I could still see Dylan, but our planned outing to Renishaw Hall was out of the question. This is an annual routine which helps me with Mothering Sunday, a day I have found difficult since my mother died in May 2006.  I enjoy receiving cards and gifts from my children but it doesn’t lessen the pain of not being able to see my own mother. In some ways it makes her absence more acute, now I am un-mothered.

Reservoir

Government guidelines allowed me to take Dylan for exercise somewhere local. I decided the best replacement for our cancelled trip was a reservoir walk, something Dylan enjoys and for which there are multiple options .  As I considered their relative merits, however, I realised that Dylan tends to associate reservoirs with pubs.  Agden and the Old Horns. Langsett and The Waggon & Horses. Underbank and the Mustard Pot. Redmires and The Three Merry Lads. Dale Dike and The Strines Inn. This could be problematic.

I set off driving along the road between Dylan’s residential setting and my home, along which the reservoirs are scattered. ‘Renishaw is closed today, Dylan’ I told him. ‘Let’s walk around a reservoir instead.’  I was still wondering which one when, at a bend in the road, I remembered Broomhead.  It isn’t a reservoir we visit, really.  We walked around it three summers ago for the first time in years. There are no routines associated with it and there is no pub nearby.  It also tends to be quieter than other reservoirs. Perfect for lockdown then.

I eyed Dylan through the rear-view mirror as I parked up. He was thinking about something I could tell, his face a blend of surprise and alert. Dylan and I set off walking anti-clockwise along the reservoir’s south bank. When we reached the cross-wall at the  reservoir end, where I expected Dylan to turn left and head back by the north bank, he chose to walk on. Here, Broomhead Reservoir trickles into Morehall Reservoir like a tear. As we more often walk around Morehall,  I assumed Dylan was hankering after a familiar landscape. There was probably enough time for us to walk around both reservoirs.  ‘Alright Dylan’, I said.

But to my surprise Dylan made a wedge-shaped turn and doubled back on himself to the road which runs between the reservoirs, separating their two tears. He must be crossing to the opposite bank to walk our usual clockwise direction around Morehall, I thought to myself. I quite liked the idea of walking a figure of 8. But rather than make a right turn when we got to the other bank, Dylan turned left.  So, he did want to walk around Broomhead?  I looked at Dylan. He had a glint in his eye. There was, I suddenly realised, something looming up ahead.

Matriarch

As Dylan strode purposefully up the road I thought of her. How could I not? This is where my sister used to live,  in a waterside house, off to the right, tucked in under ancient trees. Perhaps she still did?  I hadn’t had any contact with my sister since our mother died . Across those 14 years, the weight of silence had become too heavy to carry and too much to break.

Why? I don’t remember. The wrong word at the wrong time. A mistaken look. A misjudged silence.  ‘Something and nothing’, as my mother used to say to us when we squabbled as children.  The only thing I’m sure of, looking back, is that grief undoes people. It pulls the ground from under them. And it takes people in different ways at different rates. And in those desperate days we can say and do unthinking things.  It is a painful unravelling. A wild reeling. A terrible scrabbling while the earth tilts.

After, as the estranged days became weeks then months then years, I wished there was someone to help fix things. Someone who would have understood it was because we were hurting. Someone who could have supported us through our stubborn silence. Someone who would have helped us to heal. What do you do when that person has gone? I didn’t realise, while she was alive, how responsible she was for holding the family together.

Dylan Remembering

When Dylan and I walked this way, three summers before, I had been aware of his gaze on the house beneath the ancient trees. Perhaps he gestured at it in the questioning way he has. I don’t know because I had turned my face to the ground, tightened my hold on Dylan’s arm, hurried him along. I remember feeling overwhelmed and anxious. What if she saw us?

Today, Dylan is ahead of me, gathering pace. As we draw level with the house in the woods I call his name softly, hold out my arm. Dylan ignores me and I call him again, more urgently: ‘Dylan! Dylan!’.  But there is no stopping him this time. He is heading towards the house that he remembers. He is striding up the path at the side of the house, following the route he has always known. I call him more sharply: ‘Dylan!  Come back Dylan!’  But he has crossed the back yard and is heading for the door.

What is he remembering? Family gatherings on Boxing Day. Cakes and biscuits and orange juice.  An exercise bike in an upstairs room. A fire. Men with beards. His Gran. Watching films in a room with a big glass window. Escaping unnoticed upstairs while the big people talk and laugh.  Riding pillion with me on his uncle’s motorbike along the private track (probably especially that). Who knows what Dylan remembers of those days.

I pick up pace. I must hoick Dylan back to the reservoir path. I need to restore the day to normal. I want to shout but don’t want to attract attention.  ‘No, Dylan, no!’ I hiss at him.  But it is too late. He is opening the door.  Walking in.  Not even knocking!  Now he is in the house.  I am outside, utterly at sea.  Surely, it will swallow me?  I poke my head around the door pleading: ‘Dylan come back.’  But he is on his knees in a corner, browsing DVDs. ‘I’m so sorry’ I say, as my sister and her husband appear. ‘I’m so sorry’. She takes me by my hands, looks into my eyes. ‘It’s alright’, she says. ‘It’s alright. Don’t worry.’

 Healing Dylan

After 14 years it took Dylan to bring this reconciliation about. Only Dylan could have done this. It needed someone driven by feelings and desires – uninhibited by real or imagined hurts and slights, ungoverned by social rules or convention. After all these years of wondering whether a family wound could ever be healed and worrying that none of us would fix things, it was Dylan who made it better.

Bless Dylan. How I love that, in the end, it was this young man – whose autism and intellectual disability famously confer deficits of imagination, social understanding, empathy, cognitive capacity and communication – who brought this about. Blessings on my passionate, strong-willed, opportunistic son.

 

Breaking the Rules

As the first weekend we would be in lockdown happened to coincide with Mother’s Day, Government briefings had particularly noted that the rules meant no contact with families. After 14 years of having had no contact, Dylan and I stayed a couple of hours with my sister and her husband. We spent the time chatting and drinking tea. Dylan gazed at an architectural drawing of the Natural History Museum and lobbied for chocolate biscuits. By the time we left he had explored every room in the house and helped himself to four DVDs. On our way out of the door, unprompted, Dylan extended his arm to his aunt and uncle in turn, shook them by the hand. ‘We’ve broken every rule in the book today’, I observed.

As Dylan and I made our way back to the car I was conscious of a slackening inside, a different relaxed. The light was warm and honey-coloured.  We stopped once or twice and took photographs. Later, when I looked at the pictures on my phone, I was struck by the relief in my face.  I texted my sister. ‘I am smiling at the news on the radio not to see family today.’ ‘I think we can just about make an exception in this case’ she replied.  We marvelled at the circumstances that had reunited us and at the serendipity of it being Mother’s Day. ‘Mum will be smiling on us’, my sister reflected.

 

 

Since Mother’s Day, my sister and I have observed lockdown. We hope to meet again soon!

Dylan’s Rainbow: Crock of Gold or Empty Promise?

An NHS guide for patient management during the coronavirus pandemic notes that ‘People with a learning disability have higher rates of morbidity and mortality than the general population and die prematurely’ (see link below).  In 2018-19, apparently, at least 41% of deaths of people with a learning disability were from respiratory conditions. Among those with a learning disability there is a higher prevalence of asthma, diabetes and weight conditions (obese or underweight) which make this group ‘more vulnerable to coronavirus’. The guide notes there is therefore ‘strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic’.  It also cites evidence that people with autism have higher rates of health problems which ‘may result in elevated risk of early mortality’. Although Dylan doesn’t have the underlying conditions which increase vulnerability to coronavirus, his autism and learning disability mean it’s impossible not to worry.

Coronavirus and Capacity

Dylan’s combination of autism and intellectual disability (which I’ll refer to as AutID from this point) means he requires 1:1 support  in a residential setting.  This puts him at increased risk of infection because he has contact with a large number of support workers (and, by association, their families) which increases his potential exposure to the virus. As we have seen in relation to the elder population, the social ‘bubble’ of a locked-down care home is large and intimate enough for the virus to spread quickly once it has been introduced.

Fortunately, all is well at Dylan’s setting; no one has contracted the virus and the staff are all well and still at work. It is not inevitable, of course, that if a resident or staff member catches the virus they will spread it to others in their care bubble. There are processes (such as testing and using appropriate Personal Protective Equipment) that are designed to prevent this from happening. There’s been a lot of discussion in the media about the shortage of tests and PPE but there are places where supplies are getting through as they should which, happily, is the case at Dylan’s care home.

Even so, it is challenging to provide care for someone with AutID during a pandemic. Those who care for Dylan have to keep him safe while protecting themselves and others.  This isn’t easy, even with PPE and full access to tests, because of Dylan’s lack of understanding of social distancing and his inability to protect himself or show consideration for others. Added to this, some people with AutID won’t accept the preventative care and monitoring that are so important during a pandemic.

How do you protect someone with AutID?

It’s all very well having an adequate supply of PPE but adults with AutID may not accept these.  This will vary for individuals but Dylan will not tolerate wearing a mask or other people using them. The NHS guidance referred to earlier acknowledges this and advises clinicians that ‘masks and protective clothing may frighten [people with AutID], make them more anxious and lead to adverse behaviours, such as hurting other people, hurting themselves and destroying property.’ This is a pretty accurate description of Dylan’s likely response to an insistence on wearing face masks and it’s good to see such information being issued to front line staff. While I don’t think Dylan will ever accept a covering over his own mouth and nose, I’ve found he will accept me wearing a scarf over mine.  This is a simple adjustment, enabling me to do what I can to protect Dylan.

Fortunately, Dylan is quite used to people wearing aprons as this is part of the routine he follows for his social enterprise activity.  I’ve also recently managed to persuade Dylan to wear protective gloves when we are out in the community.  The first time I wore some I offered a pair to Dylan.  He wasn’t interested and pushed them away. I kept mine on and put the spare pair in the side pocket of my backpack.  To my surprise, within half an hour of our walk Dylan pulled the gloves out of my pack and put them on.  This is the first time I’m aware of Dylan copying behaviour I’m modelling which feels like a real breakthrough. It doesn’t take Dylan long to adapt to something once he’s taken the plunge: the next time we went walking Dylan expertly showed me how to blow into a glove before putting it on.

Monitoring Dylan is a little more challenging.  Staff are taking the temperature of residents on a daily basis but Dylan won’t allow this.  The only way I managed to get a temperature reading from Dylan as a child was with a Headscan thermometer.  There are none to be found at the moment but I keep looking. Taking a temperature reading could be important for monitoring Dylan’s health as he has limited strategies for communicating how he feels.

As the NHS guidance notes, some people with learning disability may be unable to explain how they feel or ‘not be able to articulate their response to pain in the expected way’. Dylan’s communication is limited but he does say ‘oo’ or ‘poor Dylan’ if he is in pain or feels unwell. Sometimes the words he chooses can mislead, however;  Dylan uses ‘sick’ to communicate that he is hungry for example. It took me a while to figure this one out but it makes perfect sense –  a not very nice feeling in his tummy – and reminds me that Dylan is creative about communication and will substitute a word he knows for one he doesn’t.  The NHS guidance includes links to useful resources such as the Non-Communicating Adult Pain Checklist and Wong-Baker FACES Pain Rating Scale, which I’ve been using with Dylan at weekends to encourage him to show me how he feels.

The NHS guidance warns that the presentation of coronavirus among people with a learning disability ‘may be different from that for people without a learning disability’.  In some cases, the guidance notes, frontline staff will need to understand behavioural responses to pain such as laughing, self-harm or becoming withdrawn. It’s good to see these examples in the guidance and to read the advice to clinicians to listen to the family or carer as ‘They know the person who is unwell best.’

How do you treat someone with AutID?

The NHS guidance is aimed at front line staff treating people with AutID for coronavirus infection in a hospital setting. While it is reassuring that specialised guidance has been provided about the needs of this very vulnerable group of people, the prospect of Dylan requiring hospital treatment for Covid-19 fills me with dread.

I heard recently that someone with AutID may be accompanied to hospital by one other person (a parent or carer). I found this reassuring as previously it had been unclear and the cause of much concern.  Anyone caring for a child or adult with AutID would probably agree that the idea of them being alone in a hospital  doesn’t bear thinking about. ‘You cannot let that happen, mum’, my daughter told me.  ‘Promise me you won’t let that happen’. I have had to think through some difficult (almost unimaginable) scenarios as the parent of  a vulnerable adult. Sometimes there is a flash of intuition which causes me to try to extract promises from others.  I telephoned Dylan’s care home manager. ‘Please’, I said ‘Please promise me you will not let Dylan go to hospital alone if he becomes ill.’

For Dylan, and I suspect for many adults with AutID, hospital-based testing and treatment (from pain relief through to ventilation) would necessitate restraint, sedation and inconceivable distress. This is such a difficult possibility to consider, the only way of coping is to focus on keeping Dylan safe at home. Recently, listening to the latest bulletin about testing for coronavirus in care homes, I realised this was not necessarily a good thing, from Dylan’s  perspective. The antibody test for coronavirus is a blood test and the test for COVID-19 a nose swab.  Both procedures would cause Dylan enormous distress and require restraint and sedation. I telephoned Dylan’s care home manager.  ‘I don’t want Dylan to be tested’, I said,  ‘Please tell me he won’t be tested’.

Fortunately, everyone involved in Dylan’s care knows him well enough to agree about such things. There is no plan to test Dylan for coronavirus as long as he is symptom-free or managing his symptoms.  If he becomes ill, we have a quarantine plan that would allow Dylan to continue to follow his routine as much as possible with minimum disruption. I find it very reassuring to have conversations about such things and to have these plans in place.

 Dylan’s Rainbow

For Dylan, support is everything at this time.  His contact with me continues as normal, thanks to the guidelines which allow people to provide care for the vulnerable. Dylan’s relationship with support workers is also continuing as usual, due to good management and health practices in the home. Perhaps Dylan notices subtle differences in the way we interact with him. He has a range of games and rituals which involve physical contact, for example.  I’ve noticed some members of staff  pull back or move Dylan on (understandably) and sometimes I think I see a puzzled look in Dylan’s eyes.

One day, while out for a walk with Dylan, I pulled back myself. Half way around our planned route, we were taking a break. Suddenly, Dylan pushed his water bottle against my mouth. I flinched, pushed it away.  I couldn’t believe it. What had been the point of my scarf and careful distance?  If Dylan was carrying the virus, he had now certainly passed it to me.  Then I saw Dylan’s face, looking dejected.  Any other day I would have been celebrating his generous gesture.  I had forgotten my water bottle that day and Dylan was simply trying to share what he had with me.  Overwhelmed by a bittersweet mix of sadness and joy, I praised Dylan for this suddenly (confusingly) unwelcome social act.

Perhaps one of the hardest things to consider is something happening to me. Statistically I’m far more vulnerable to the virus than Dylan. The section in the NHS guidance about the importance of listening to parents/carers ends with a warning to ‘remember the carer they  come in with may not be their usual carer at this unusual time’. I read the sentence twice, turning the various scenarios over in my head. I telephoned the manager of Dylan’s home: ‘if I become ill and can’t look after Dylan…’ I began.  Next,  I telephoned my daughter: ‘If anything happens to me…’ I began.  ‘Oh mum’,  she said, ‘don’t’.  But it is reassuring to have such conversations; now, more than ever, we need to build circles of support around our family members.

Dylan has been helping to make a rainbow of thanks for everyone who supports him at the care home. It’s been great to see such support for the NHS and care sector in recent weeks; the rainbows and clapping have certainly captured the public imagination . This grim crisis has shone a light on care workers, in particular, and helped to build more understanding and respect for their role. Those who work in or use the care sector have complained about low pay and poor conditions for a long time. Surely supporting the most vulnerable members of society – the elderly and disabled – should be work that is most valued by society, not unacknowledged and underpaid?   Maybe the crock of gold at the end of the rainbow is that coronavirus will help us re-evaluate our priorities, as a society?

Where does it End?

It’s a nice idea isn’t it? I would like to believe this might be how the story ends. While I don’t doubt there is strong public support for the health and care sectors,  it would be easy to doubt the political will. In particular, some of the provisions of the Coronavirus Bill, which slipped quickly through Parliament at the start of the pandemic with minimum discussion or scrutiny –  and which passed into law as the Coronavirus Act on 25th March 2020 –  are a cause for concern.

The Coronavirus Act suspends the duties of Local Authorities (under the Care Act 2014) to meet the eligible needs of disabled people and their carers (Sections 18 and 20). Under the Act, Local Authorities only have to provide care if not to do so would breach the European Convention of Human Rights (ECHR).  As access to care and support is not a human right under the ECHR, this opens the door for Local Authorities to withdraw health and social care funding from disabled adults. Other provisions in the Act allow for a delay in carrying out assessments for eligibility for NHS continuing care. How could I not be made anxious by the introduction of this legislation, given that Dylan depends on such funding?

You might say  it’s cynical of me to suggest that the Coronavirus Act could pave the way for the removal of health and social care funding from adults with autism and intellectual disability. However, spending priorities will need to be reorganised, given the scale of the economic collapse, and it’s not inconceivable that removing the obligation on Local Authorities to provide health and social care will be part of the recovery plan. If, after all the rainbows and the clapping, we look to the most vulnerable in society to pick up the bill, that won’t be a crock of gold but an empty promise.

 

Key Document:

NHS.  Mental health, learning disabilities and autism:  Guidance.  Coronavirus, COVID-19  (25 March 2020, Updated 9 April, 2020)

https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0074-MHLDA-Covid-19-Guidance-Workforce-final-v1-1.pdf

Lockdown: Creativity, Flexibility and Adjustment

My last post ended as lockdown began.  I returned Dylan to his care home after our trip to Durham, uncertain what the full implications might be but aware that Dylan’s life was about to change dramatically.

It was clear the rhythm of Dylan’s days  –  organised around an afternoon activity in the community – could not be maintained. The museums, galleries, country houses, cathedrals, sports venues, cinemas, cafes and pubs which Dylan regularly visits had closed. Even the country parks and community spaces were wrapped in sticky tape. How would Dylan cope?

There are ‘bigger’ worries than these of course. What if support staff at Dylan’s home got sick?  How would the home cope with significant absences? What if Dylan or one of the other residents got sick? How could Dylan be quarantined? With shortages in the shops, would the supply of food and essential goods to the home be maintained? And what about the supply of PPE?  It is the care home manager’s role to address these issues and plan for contingencies, of course, but parents still worry about them.

Then there are other,  potentially bigger, worries. The pandemic poses significant challenges in relation to the health care and medical treatment of autistic adults with intellectual disability. In the longer term, after the immediate crisis is over, it will raise difficult questions about the funding of care for vulnerable adults in the community. In a social and economic crisis, vulnerable members of society typically become more vulnerable.

In previous posts (here and here) I’ve reflected on the position of autistic children and adults caught up in war zones.  While writing those posts I tried to think deeply about the challenges of caring for a vulnerable family member at a time of chaos. Never did I imagine this particular scenario, however.  Nor did I consider something could happen that would make me feel as anxious for Dylan as I do now.

Dylan isn’t aware of any of this of course.  Ironically, while many people who wouldn’t have described themselves as suffering from anxiety are now experiencing it, Dylan (for whom anxiety is a core challenge) has no notion of this source of anxiety at least. For Dylan, the challenge of lockdown is simply the disruption to his routines and activities.

 Creative Lockdown

I will no doubt return to some of those ‘bigger’ issues in future posts. Today,  however, I want to celebrate the creative ways in which staff at Dylan’s care home have risen to the challenge of lockdown and the positive way in which Dylan has responded to it.  Here are ten things that have helped Dylan to live in this strange new world.

  1. Disney +

The day after I had returned Dylan to his care home I saw an advert for the newly-released Disney streaming service. The timing felt serendipitous.  Although under normal circumstances we try to limit the time Dylan spends on his iPad, nothing about the current situation could be considered ‘normal’. The manager of the care home agreed it was a good idea to purchase a subscription for Dylan. So, on the first full day of lockdown I nervously made the two-hour round trip to the home, telling myself it was an essential journey and that I would find a way of explaining why if I was stopped.

When I arrived at the home I was struck by the calm, happy atmosphere. I’m not usually there during the week and Dylan isn’t used to me turning up unplanned.  I was therefore a little nervous about whether my visit would be disruptive. Dylan seemed surprised and pleased to see me but equally committed to continuing to follow the activities on his programme.  He was perfectly happy to leave me in his room, setting up a Disney+ account on his iPad, while he went off to water the plants in the garden with a member of staff.

I sat for a while in Dylan’s room thinking how fresh and clean it was and how happy the atmosphere in the home felt. This felt like a gift and I’ve kept it in my memory. Disney+ has also proved a huge hit with Dylan. Well worth the 60 quid.

  1. Movie Afternoon

Dylan might have Disney movies streamed to his iPad, but you can’t beat a big screen, a squidgy sofa, a choice between popcorn, pizza or sweets and a bit of company.

  1. Bake Off!

What is Dylan’s favourite thing to do after watching a movie? Oh yes.  That will be eating cake.  An afternoon Bake Off isn’t such a disappointing substitute for a trip to Magna.

  1. If Dylan can’t go to the Slush, the Slush will come to Dylan

Dylan loves a Blue (as he calls slush puppies). He has amazing antennae for cafes, pubs and kiosks which sell them. Normally, one of Dylan’s weekly outings would include an opportunity for a Blue. How can we help Dylan to cope with lockdown? Dylan’s care home manager had the most amazing idea:  buy a slush machine for the home. Oh my!

  1. Scooter Games

Dylan has always been good at physical activities. At school, he worked pretty much at age-appropriate levels  in PE (although he has little interest in team games). In particular, Dylan has fantastic balance.  From an early age Dylan has had a range of outdoor equipment, including a scooter which went with him when he moved to the care home three years ago (or is it nearly four?).  The staff noticed Dylan had outgrown the scooter and have bought a new one. Dylan is loving it, apparently, and choosing it independently, even when it isn’t on his programme.  I love that when it is a planned activity, staff have found a way of building in educational opportunities, such as a colour-matching task.

  1. Picnics

Dylan loves eating al fresco. A key part of his regular activities involves packing his lunch box and enjoying this in community parks and picnic areas.  Fortunately, Dylan has been able to use the home’s outdoor areas to keep this routine going.  The generous grounds have proved to be essential for Dylan (and other residents) during lockdown. While they were always well used, they are now central to many activities. I can’t imagine how difficult lockdown must be for families who don’t have access to outdoor space.

  1. Easter Eggs

An afternoon Easter Egg hunt in the garden (Dylan had no trouble finding the eggs).

  1. Celebrating Achievements

Dylan’s ASDAN certificate, confirming his completion of a unit of work, arrived during lockdown. As the photo shows, staff celebrated with Dylan and treated him to a bowl of ice cream…

  1. Letters Home

One morning I received a letter from Dylan in the post.  As well as being a great activity for Dylan to do during lockdown,  this is a reassuring gift for a parent to receive.

  1. Go-Kart

Inspired by reports of Dylan’s scooter I asked friends for ideas for any other outdoor equipment I could get for Dylan.  There was a strong pitch for a Go-Kart and I managed to get this one delivered to the home this week.  I’m told that it is a big hit with Dylan!

Flexible Lockdown

As these activities illustrate, all is well at Dylan’s care home and staff and residents are doing fine.  Although Dylan seems to be enjoying the new activities, something else that has probably helped with lockdown is that his weekend visits home have continued.

I wasn’t sure whether the guidelines would permit this, initially, but following consultations with relevant agencies it was agreed that the clause relating to the support of a vulnerable adult allows for this. Dylan’s risk assessment and care plan note that if Dylan were not able to continue his home visits there would be a risk of heightened anxiety causing challenging behaviour and possible safeguarding issues.  Other than seeing Dylan at weekends I am self-isolating so am low risk to Dylan and I follow government guidelines while caring for him. Dylan and I are both well but if either of us did develop symptoms during a home visit I would keep Dylan with me rather than return him to his residential setting.

I am relieved that it is possible to build flexibility into the guidelines in this way.  Adults with autism and intellectual disability who live in care homes are vulnerable, but not necessarily in the way that elderly care home residents are. Dylan is physically strong but he is vulnerable psychologically and emotionally, at this time. Continuing to have contact with me and to maintain his regular visit home is critical to his health and well-being.

Dylan is having to adapt  to some changes, of course. We would have been on holiday in Cumbria this week without Coronavirus. Dylan has asked repeatedly about ‘bed’ and ‘sea’ and I have reassured him ‘soon’.  Rather than our usual trips out, we have been restricting ourselves to walks near Dylan’s home.  I  have been careful to plan routes which don’t take us past pubs or cafes so that the issue of them being closed doesn’t arise.  And as picnics are not allowed, we wait until after lunch for our trips out.

Even with these changes, Dylan seems happy at weekends. In fact, Dylan is coping brilliantly with the whole situation. Lockdown may even have brought some benefits, from Dylan’s perspective. He seems to be enjoying the opportunity to spend more time around the residential setting, for example. Perhaps going out into the community every day was tiring for him? Maybe, when this is all over, we can learn from this and make sure that Dylan has some days at the home as well as in the community.

Adjusted Lockdown

I was pleased to read the updated exercise guidelines for children and adults with autism and intellectual disability (see link below).   It is acknowledged that for some autistic people, exercising in their local area may not be comfortable or appropriate, particularly if changes have been made to a familiar landscape (such as routes taped off) or an area become busier. This is definitely the case in the area around my house where I’ve been reluctant to walk out with Dylan, given his tendency to try and shake hands with members of the public. I’ve since taken Dylan on a couple of walks which have involved a short drive. Both days, we didn’t see a soul.

This week the Government have announced a relaxation in the rules around exercise more generally, declaring that all members of the public are now able to drive outside their local area in order to take ‘a long walk’.  Presumably this is an attempt to reduce the numbers exercising in city parks. I will need to be prepared for things being a little busier this weekend…

Thanks to the wonderful staff at Dylan’s Home –
it’s been great 
to see care sector staff getting the recognition they deserve.

However you and your family are spending Lockdown,
 keep safe, stay well.

 

Useful Links:

This is an article written by Julian Norman (Barrister at Drystone Chambers) interpreting the Government guidelines on exercise in relation to queries from parents of children with SEND (published 30th March 2020). There is a useful example of an information card you can carry with you while out with your SEND family member.

https://www.linkedin.com/pulse/coronavirus-regulations-guide-exercise-send-parents-julian-norman/?fbclid=IwAR3r5YSiKkzl0AISDhaRAyyfV6-KzbYj0xo6XlcdVqrZb9Xmr5j9QHYBinQ

Here are Government FAQS (published 29th March 2020) on exercise. Point 15 specifically refers to children and adults with autism and intellectual disability.

https://www.gov.uk/government/publications/coronavirus-outbreak-faqs-what-you-can-and-cant-do/coronavirus-outbreak-faqs-what-you-can-and-cant-do

New guidelines are being issued continuously so the above have already been superseded.

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

IMG_2106As 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).

IMG_2118I 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 14th 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 26th 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 4th 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

The Curious Case of Coco:  Dylan and Dogs

After Dylan moved to residential care I told a friend I was thinking about getting a dog.

 What do you want to do that for? You’ve  just got your life back and you want to tie it down again? 

She wasn’t a dog owner herself and wasn’t sympathetic.

I get it.  You want something to care for, don’t you?  You don’t know what to do with yourself now Dylan has moved out.

It wasn’t that, I protested. It really wasn’t. My identity did not depend on looking after others.  People or animals. I just thought my lifestyle would suit a dog.

You mean so you have a dog to take on walks instead of Dylan?

 A bit harsh but probably on the nose. I backtracked with what nonchalance I could muster.

Well it’s not going to happen. Dylan’s going to be coming home at weekends.

Autism, Animals and Anxiety

The combination of a dog and Dylan is unthinkable.  While there are  moving ‘rescue narratives’ of therapy dogs who have transformed the lives of autistic children and adults, narratives of autism and dog anxiety are equally powerful. Dylan is absolutely terrified of dogs and I know from contact with other parents of autistic children he is not alone in this.

It isn’t just dogs, in truth.  Dylan isn’t fond of any small animal. He can walk through a field of sheep, cows or horses (I am the one anxiously clinging to Dylan’s arm in a field of cows). He also loves going to the zoo and spends long periods gazing at lions, giraffes and bears.  But cats, dogs, rabbits, guinea pigs, chickens, birds and butterflies he cannot tolerate.

Nevertheless, when the children were small we made a point of having family pets.  “At the very least”, I told my husband, “they teach children about death”.  This was a lesson my daughter duly learned when Dylan dropped her lead soldiers in the fish tank killing the fish (she insisted) from toxin or a blow to the head. Goldfish and Dylan were not a good combination, we realised, when he was caught with the school goldfish in his mouth. Family cats were in less danger from Dylan but provoked high alarm in him. Potter the rabbit (in an outside hutch) was barely tolerated. A dog, I maintained, was out of the question.

Friends with dogs suggested they bring their pooch to visit or that we join them for a walk. Too risky, I  contended. Encouraging Dylan to walk near a dog can be difficult if there is something about the dog which unnerves him. I’ve tried to find a pattern but I don’t think there is one.  At various times over the years I’ve had the idea that small dogs, black dogs and dogs with protruding muzzles (so you can see their teeth) can especially trigger Dylan. But I may be wrong. Every time I think I’ve established a ‘law of dogs’ to help me to manage Dylan’s anxiety, I discover an exception.

Worry, Worry, Worry

While the calmest of dogs is not enough for Dylan to unlearn fear, the thing that is guaranteed to send his anxiety sky high is an excitable dog. What Dylan cannot cope with is unpredictable behaviour. The reality is, however, that it is usually Dylan’s reactions to dogs which trigger their excitability, creating a situation where both Dylan and dog are leaping about, running in frantic circles, barking or shouting. ‘Worry, worry, worry’ Dylan yells repeatedly.  This is Dylan echoing back the final part of the phrase I say to him when we encounter a dog: ’It’s alright, Dylan. Don’t worry’.

It might be the case that I can’t help Dylan and that he doesn’t help himself but dog walkers don’t always help either. Some people realise quickly, through experience or intuition, that Dylan is anxious and that he has autism and/or learning disability. These dog owners do everything right, calling their dog to heel and leashing, holding or carrying the dog while Dylan walks past. Others, however, seem to have no grasp of the situation whatever.  A typical (unhelpful, infuriating) response is:  ‘Oh s/he’s alright. S/he won’t hurt you. S/he just wants to play’.

I know that dogs become part of the family for their owners but I am always amazed by the tendency of some people to treat their dogs as humans and afford them equal rights with Dylan. I suppose some animal rights activists might disagree but I am of the view that the needs of my anxious, autistic son to access the community safely should have priority over that of a dog’s. I know that most dog owners are responsible and supervise their animals in the community but it is the minority who don’t that helped to create and sustain Dylan’s fear of dogs.

It is not so much encounters in open land that I have in mind. I know that dogs need to have spaces where they can run freely and when I am supporting Dylan in such places I see it as my responsibility to anticipate and head off potential incidents.  This involves a range of strategies: pausing; changing course; calling Dylan to my arm; moving Dylan to my other arm; calling to the dog owner to alert them to the situation. And (not so effective) trying to soothe Dylan with “It’s alright Dylan. Don’t worry.”  These encounters I can usually manage (though they are wearing). The ones I find much harder to tolerate are dogs running free on beaches between months they are forbidden or on paths where notices clearly require them to be on leads.

Coco

But then, shortly before Dylan moved to residential care, Dylan had a curious encounter.

A young woman at a day placement Dylan attended before he moved to his care home had a dog called Coco.  The dog would come to meet the young woman at the end of the day so Dylan became familiar with Coco. Over time, Dylan was able to observer how Coco interacted with humans and he started to show an interest. Dylan’s support worker suggested we capitalise on this and see if Dylan might be encouraged to stroke Coco.  With the patient understanding of Coco’s owner, Dylan was eventually prepared to do this. Around this time Dylan moved to his care home and didn’t see Coco again.

Curiously, however, Dylan thinks he sees Coco constantly. When we are in the community Dylan shouts ‘Coco, Coco’ at every passing cockapoo. Dylan reliably identifies and responds to this particular breed.  Sometimes he wants to say hello. Once, I was convinced Dylan was mistaken and commented to the owner: ‘He’s only usually interested in cockapoos’.  But she is a cockapoo, the owner replied.  I’ve googled cockapoos and can find nothing in their profile which suggests the breed is particularly suited for people with anxiety so can only assume it was Dylan’s positive experience of Coco which made the difference.

Kizzy

The friend who questioned my reasons for wanting a dog, in the immediate aftermath of Dylan moving to residential care, was right to do so.  Since then I’ve realised that if I ever do get a dog it will need to be once I’ve retired; that  (never having owned one) I would need to do a lot of research;  and that Dylan would need careful introduction. Also, it would probably need to be a cockapoo called Coco.

In the meantime, I told myself recently, it felt a bit hard that I couldn’t have a pet, given that Dylan had moved out of the family home and only visited one night a week. Surely there was something I could do? Some balance to be struck between Dylan’s needs and mine?  I had ruled out a dog, but maybe a cat wasn’t out of the question.  I explained my situation to the local cat shelter and asked whether they had an older cat who would rather sleep than play.  A cat who wouldn’t behave unpredictably or try to interact with Dylan. A cat who wouldn’t mind curling up in a ball at weekends and sleeping through Dylan’s home visit …

Kizzy came to live with us at the end of last year. She is a 20 years old indoor cat whose preferred activity is sleeping on a lap, in a patch of sunlight or on a high platform. Dylan was alarmed initially, yelling worry, worry, worry on his visits.  Once he realised that Kizzy barely moves position, however, and has little  interest in him, Dylan calmed down.  Dylan is still nervous about Kizzy but he can tolerate being in the same room, at a distance, providing I am there to supervise.

Dylan would prefer that Kizzy wasn’t around but a slow old cat is infinitely preferable to Dylan than a youngster. From my perspective, however, the adoption has turned out to be less successful. It quickly  became apparent that Kizzy is not a well cat and a trip to the vets confirmed kidney disease. If my friend had been right in her observation that I just wanted something to care for I would perhaps feel better about the situation. As it is, I am trying to comfort myself that older pets also help adults to come to terms with death…

 

 

 

Images

Apart from the photo of Kizzy all images are sourced from the Internet and to the best of my knowledge are not copyright restricted.

“It’s a Blue ‘Un”: cars, colours and autism

Blue ‘Un

My father, from a coalmining family in Northumberland, tells a story of the first person in his village to acquire a motor car. It would have been the early 1950s, before Dad moved south. In answer to the question ‘what sort of car is it, mother?’ my Grandmother had apparently replied ‘it’s a blue ‘un’.

When I was young I was amused by the story but later, when I realised the joke was on women, I stopped enjoying it. Then I would reprimand Dad for the sexism inherent in his anecdote. And besides, I told him, didn’t my Grandmother have more important things to think about than the make and model of a car? Could any of the seven men in the family have named the brand of blacking she used on the hearth or the soap she scrubbed their pit clothes with?

Grey One

My father’s move to South Yorkshire was part of his commitment to self-improvement.  He took  an apprenticeship to become a colliery electrician and enrolled in night school. He met my mother and by the end of the decade had managed to save enough money for a deposit on their first home.

The arrival of three children in seven years meant Dad had to upgrade his motorcycle with a sidecar to a car. It was a Ford Anglia (registration plate 243 PAU).  My father’s commitment to social mobility included the requirement that we speak in standard English rather than the local dialect;  if anyone had asked me what colour the Anglia was I would have replied  ‘a grey one’

 Green ‘Un

On Saturdays the local newspaper, the Sheffield Star, produced a separate publication devoted to sport. It was called ‘The Green ‘Un’, a reference to the colour of the paper it was printed on.  In a soccer-mad city, with loyalties divided between two clubs (Sheffield Wednesday and Sheffield United) The Green ‘Un was popular and widely read.

My father had no interest in football but my mother was a lifelong Sheffield Wednesday fan.  One Saturday evening I was judged old enough to go alone to the corner shop and was asked to ‘go and get a Green ‘Un’.  I remember the laughter of the newsagent and customers as I held out my money and asked for ‘a copy of the Green One please.’

 Blue ‘Un

The car I have driven for the last nine years is an ex-Motability car which I bought just out of warranty with very low mileage. After a string of breakdowns in my previous car I had decided I needed something more reliable to keep myself and Dylan safe. It is never comfortable to be stranded at the side of a motorway or remote road, particularly as a single woman, but to breakdown while responsible for an autistic adult who lacks capacity and has limited communication is very stressful.

Dylan does not understand any sort of delay or wait. Being stopped at a red light is sometimes frustrating for him so waiting hours at the side of road for assistance (assuming we can get a mobile signal and request help) is a nightmare scenario. As Dylan doesn’t easily take instruction and lacks road awareness, leaving a broken vehicle to get help is not an option. For these reasons I decided that I could not compromise on vehicle safety.

On advice I bought a Skoda Fabia – not a car I would have considered normally but I was assured it would be reliable because Volkswagen (who own Skoda) make the engines. I asked a local dealer to find me one. ‘I don’t care about the colour’ I told him. When he telephoned with one I might be interested in he said:  ‘It’s a blue ‘un. Is that OK?’

 Good One

The advice I received was sound. The only time I ever needed to call breakdown for the Fabia was during a visit to Spurn Point when a  grinding noise from the front nearside convinced me I had a wheel bearing problem. It turned out I’d picked up pebbles from the shingly land; all that was needed to dislodge them was to reverse, hard and fast. Not a mechanical failure then…

But last May, when I got the car tested, the mechanic told me my gearbox ‘might be going’.  For the next 4000 miles I listened as my Fabia became grumblier. Finally, in September, I decided that after nine good years it was time to exchange rather than repair. Dylan was so comfortable with the Fabia, and it had been so reliable, I reasoned it was probably a good idea to get an identical make and model. ‘I don’t care about the colour’, I told the car dealer.

Grey One

Back seat of the bus

Before the car dealer could find me a replacement, my blue Fabia took a turn for the worse. I decided I could no longer risk Dylan in the car so for the last seven weeks have been managing without a vehicle. This has been tricky as Dylan’s care home isn’t reachable by public transport. Staff have driven Dylan to me some weekends and I’ve planned local activities on foot and by bus for his visit. When this hasn’t been feasible, Dylan and I have had the ‘weekend off’. A couple of times, however, I’ve hired a car…

The first time I was allocated a Vauxhall Corsa. I’d asked for a car as close to a Fabia as possible, in terms of size and style, and was reasonably confident the Corsa would be  acceptable to Dylan. My main worry was that it didn’t have a CD player. ‘I’m sorry Dylan’, I said when I picked him up. ‘We’re in a different car this weekend and there are no CDs.’  I felt Dylan hesitate. He scanned the car park from left (the side I usually park) to right and left again. Before I had chance to point out the Corsa, Dylan strode confidently across the car park. His quick sweep of the vehicles had given him all the information he required. Curious to know where Dylan was heading, I followed behind.

With barely a glance Dylan passed a line of cars and stopped by a large saloon. He gestured to me to open the boot so he could put his overnight bag in. The car bore no resemblance to the Fabia or to any other car Dylan had been a passenger in. Why had he decided on this one I wondered? ‘Not this car Dylan’, I said. ‘Ours is the grey one over there’.

Colour Sense

When we were settled in the Corsa I realised why Dylan had picked the car he had; it was a ‘blue ‘un’. Perhaps, like his great grandmother, the distinguishing feature of a car for Dylan is not the make or model but what colour it is. I know people who assign colours to  words, numbers, feelings and thoughts  – why should I be surprised if Dylan categorises familiar objects and processes by colour?

I ran through the colours of all the cars I have owned, chanting their names like pearls…

Silver Renault 4; Yellow Renault 4; Red Citroen Dyane; Green Renault 5; White Renault 4; Sky Blue Beetle; Turquoise Blue Renault 5;  Blue Morris TravellerWhite Fiat Punto;   Blue Renault Scenic; Blue Skoda Fabia.

All but one of the cars in Dylan’s lifetime, I realised, has been blue. Is it such a surprise that he should live by the law that ‘Mummy drives blue cars’ ?

 Blue ‘Un

Joke picnic

When Dylan was young I tried to teach him to learn his colours through Thomas the Tank Engine. I’m not sure that  Edward and Henry helped Dylan to identify ‘red’ and ‘green’ but his favourite engines may well have informed his colour preferences. When I ask Dylan to choose the colour of things such as t-shirts and slush puppies what he could be expressing when he chooses blue (as he tends to) is love of Thomas. Perhaps Dylan simply prefers Thomas-coloured cars? 

So, the next time I hired a car for the weekend I asked if they had a blue one available. The customer services assistant seemed exasperated by my requests (could you also put the child locks on for me please and could you please tell me whether it has a CD player). The colleague she passed me to was gentler and I explained about Dylan and why I was concerned about details. He had a blue Nissan Juke that might suit me, he said.

It was one of those weekends when plans go awry. I’d hired the car so that Dylan and I could drive out to the Peak District and do one of our ‘big walks’ but that weekend Sheffield was caught in a deluge which brought floods to the city and surrounding area. The hire car sat unused outside the house until, frustrated by lost opportunity, I suggested to Dylan that we go for a short drive and have a picnic in the car.

Dylan was very happy with this.  The car suited him just fine. CD player. Comfy cabin. Nice gearstick (a particular interest of Dylan’s). Blue.  It didn’t, however, suit me at all. This was a Nissan Joke, I decided: keyless gimmicks and blind spots. I didn’t mind the colour though. I could live with that.  Suddenly it occurred to me that I’d been approaching the process of changing my car from the wrong starting point: instead of asking the car dealer to ‘find me a Fabia’ I should have told him ‘find me a blue ‘un’.

Red ‘Un

Last week I got a call from the car dealer. He’d told me that he wouldn’t waste my time and would only contact me when he found a Fabia in great condition. As I’d been waiting seven weeks, I assumed this wasn’t proving easy. ‘Am I going to have to compromise?’ I asked him. ‘Well it doesn’t have a CD player’ he replied. I pondered the news. I really needed to get back on the road. It was the mechanical condition and price that mattered, surely? It would be foolish of me to rule out a car on such grounds.  ‘Probably not a deal breaker’ I replied.

‘Great. I think you’re going to love it’,  he said:  ‘it’s pillar box red.’

Daddy

I’m always amazed by the way Dylan intuitively grasps new technologies. Even with his learning disability he is a Digi kid, understanding (unlike his mother) that devices need to be swiped not clicked.

One of Dylan’s favourite things to do is scroll through the photos on my iPhone at breakneck speed (recent to oldest and back again) pausing only for a favourite image (York Cathedral) or to query a photo taken in his absence. These include the photos my daughter sends via WhatsApp which magically appear in my photo stream: ‘Sister! Sister!’ Dylan tells me when he encounters them.

I often imagine I hear sadness in Dylan’s voice as well as bewilderment. I tell him that ‘sister is at school’ which is the nearest I can get to an explanation for my daughter’s absence. It seems to satisfy Dylan in that he repeats it back to me: ‘Sister school’ is one of the few two-keyword utterances he produces regularly.

‘Daddy! Daddy!’

My ex-husband remarried recently and my daughter and her half-sister were bridesmaids. Swiping through my iPhone photos the weekend after the wedding, Dylan froze, his finger hovering mid-air over a photo of the three of them (sent by my daughter via WhatsApp): ‘Daddy!  Daddy!’ he shouted.  I didn’t know what to say. I don’t have photos of my ex-husband around the house and Dylan hasn’t had more than fleeting contact with him since we divorced 15 years ago. I thought my heart would break.

I should have realised. Although my ex-husband is not Dylan’s biological father he co-parented Dylan from six months old to ten years. My ex-husband (my daughter’s biological father) is the man Dylan knows as ‘Daddy’.  And I know from my own experience, and from what my daughter tells me of hers, that separation can have an enormous impact on a child.

I really should have realised. After all, I have just finished writing a book about the impact of divorce on a mother’s relationship with her daughter.  I have reflected on and written about the ways in which the end of my marriage affected my daughter. Why didn’t I consider that Dylan would also be affected by this? Because Dylan wasn’t able to talk to me about it I was able to ignore the weight of it? What else is Dylan carrying, I wonder? How much more lies underground?

Step Relationships

I think I knew really. I just didn’t want to admit it.  I’ve written before about the way Dylan finds emotional release through music. How he loves Sting’s Fields of Gold (which his Daddy used to dance him around the room to). How he can’t bear to listen to U2s All That You Can’t Leave Behind (the soundtrack to my divorce). And now I remember the way Dylan would look at me with questions in his eyes when his Daddy called to collect just his sister at weekends and holidays.

I remember my solicitor telling me, during divorce proceedings, that in her experience non-biological parents rarely claim access to a child following a divorce. While I didn’t think I had any grounds for claiming access to my step-daughter, I thought it might be different for my husband and Dylan. After all, my stepdaughter had a mother whereas my husband was the only daddy Dylan knew. They were, to all intents and purposes, ‘father and son’.

I was surprised my ex-husband didn’t want contact with Dylan after the divorce especially as he’d previously asked if he could adopt Dylan. Already aware the marriage was unravelling, I had said no to his request at the time.  Perhaps in this I considered my own best interests rather than Dylan’s? Maybe it would have been better for Dylan if I’d have said yes…

Long Lost Families

I might not have realised how hard being a parent is but Dylan’s biological father had been clear about this. He was not prepared to co-parent another child he told me (he had two from a previous marriage and had not found parenthood easy). If I continued with the pregnancy, I’d be on my own.

When a relationship ends we are careful to tell children it isn’t their fault and that the split is nothing to do with them. How would I explain things to Dylan when he was old enough to understand I asked myself, after he was born? Watching Long Lost Families I wondered how a searching child would feel if they found a father like Dylan’s, who didn’t want to be found.

Anxious about the future, I asked Dylan’s biological father to write something I could give to Dylan when he reached 18. When he refused, my patience ran out and I hacked into a display case of photographs at the college where we worked, replacing a professional shot of my ex- with something a little more personal. It was wrong (today we call this ‘revenge porn’) but it made me feel better. The photo I stole from the display case is lost. It doesn’t matter now. As it turned out, it wasn’t needed:  Dylan doesn’t have the capacity to understand his biological father’s absence.

Finding Daddy

The photo of my daughter and her half-sister at their dad’s wedding arrived on the day Dylan and I headed south for our annual summer holiday. This year I had booked a cottage on the coast, selected for its proximity to the things which Dylan loves: beaches, steam trains, country walks, rivers, castles and cathedrals. I didn’t subconsciously choose it (did I?) because it lay within spitting distance of the college where his biological father and I had worked.

If I had been taken by the idea of taking Dylan down memory lane I didn’t think about it while we were there. Even Dylan’s ‘Daddy! Daddy!’ cry didn’t bring that other daddy to mind in the week we stayed nearby. It wasn’t until the morning of our departure, when google maps directed us to an alternative route and I found myself driving past the college, that I thought about him. I cast a sidelong glance at the campus as I drove by. Then, from compulsion, did a u-turn and pulled into the college carpark.  Dylan looked at me quizzically. His script read: ‘next stop lunch’.  “Let’s have a walk before we get on the motorway, Dylan.” I said.

So Dylan and I spent a half hour strolling around the college grounds in the blossomy hum of summer. There were a few new buildings but the place felt eerily familiar. “That is where mummy used to work” I told Dylan, pointing at a red brick house.  “And here”, I added, “is where your daddy’s office was”. I photographed Dylan standing by the building, looking like his father.

It isn’t easy to talk about complex issues with someone with a learning disability, especially when they are ‘non-verbal’, and I have no idea how much Dylan understands of what I shared with him that day. But Dylan’s reaction to the photos on my iPhone had revealed how important family is to him, and how acutely he feels the loss of it, and I wanted to acknowledge Dylan’s emotional life by bringing his history out, into the open.

 

Selfie in the college car park…

 

 

 

 

 

‘L’ is for Llangollen: a road trip with my son

I have an interest in fictional representations of autism as a reader and as a mother. Encountering fictional characters who are autistic or intellectually disabled encourages me to reflect on Dylan and the ways in which I care for him, a process I have found as useful and illuminating as reading a research report or any professional advice.  As a reader, meanwhile, I am interested in the ways in which authors can create ‘authentic’ narratives of autism.

A review of Census by American writer Jesse Ball caught my attention recently. The novel features a character with Down syndrome, rather than autism, but a couple of things drew me to it. Firstly, the novel has ‘personal authenticity’ in that Ball based the character on his own brother, Abram, who died aged 24. Secondly, as well as Down syndrome the character has an intellectual disability and, like Dylan, needs constant care.  In the introduction to his novel, Ball explains why he wanted to write the book:

people with Down syndrome are not really understood. What is in my heart when I consider [my brother] and his life is something so tremendous, so full of light, that I thought I must write a book that helps people to see what it is like to know and love a Down syndrome boy or girl. It is not like what you would expect, and it is not like it is ordinarily portrayed and explained. It is something else, different than that.

I am interested in the way that Ball claims a unique role for fiction in the representation of disability and privileged access for family members in understanding the lives of the disabled. His aim in writing Census, Ball claims, was to place his brother ‘in the middle of it’. This he has done –  although on reading the book I found myself as interested in the novel’s representation of the father as the son…

Census

It is the father in Census who is the care-giver and his response to receiving a terminal diagnosis is at the heart of the novel. With limited time to live, and his wife already dead, the father has to face difficult issues:  Who will care for his son when he is gone? How will his son cope without him? Will he be happy?  These are questions I imagine all parents of disabled adults ask themselves – I know that I do. And, as we age, the questions become more insistent and more terrible. Some days – most days I confess – I am scared to die.

Fiction is good at going to places that make us fearful and from which our instinct is to turn away, but it also has redemptive power. The ‘narrative arc’ of Census is a road trip which the father and son make from the town of A to the town of Z. The father has resigned his position as a doctor to take on the role of census taker. This involves father and son travelling through an alphabetical landscape, interviewing residents of the places through which they pass and leaving a physical mark on those they meet.  The jacket blurb claims that: Census is about the ways in which people react to the son’s condition, to the son as a person in the world. It is about discrimination and acceptance, kindness and art, education and love.

In embarking on the road trip with his son the father hopes to reassure himself about the future:  This father believes that the good is possible. It must be possible.  Could I be as brave and optimistic and hopeful and philosophic in the face of death, as this man I asked myself?

The Magical Town of Llangollen

I struggled with the novel initially. I didn’t really get the tattooing of people they interviewed for the census.  I felt lost in time and space. Where was I?  America?  Some dystopian future? I almost put the book in the ‘recycle’ pile.  But it so happened that as I approached L (the chapters are alphabetical, following the journey taken by father and son) Dylan and I were due to go to Llangollen for Easter. Perhaps I should take the book with me and compare the reactions to father and son in the fictional town of L with the experiences of a mother and son in Llangollen?

 

Dylan and I have spent time in Wales previously but never in the Welsh border lands. I was drawn to it having seen footage of the canal aqueduct at Pontcysyllte on Countryfile. That looked like something Dylan might enjoy, I thought to myself. When I researched the area I discovered that not only was there a canal and aqueduct at Llangollen but a waterfall, beautiful river (the Dee), chain bridge, castle, viaduct, church, abbey and (how much better can it get?) steam train. This promised to be Dylan wonderland – and just as I thought it couldn’t get any better, when I searched for accommodation I found a Station Master’s cottage at Berwyn, one stop up the line from Llangollen, situated by the chain bridge with a view of the Dee and passing trains.

The real town of ‘L’ lived up to its magical promises. The cottage came with complimentary passes for the steam train which we used daily to travel up and down the line, walking stretches of the Dee Valley Way and visiting sites of interest, beauty spots and pubs. Highlights of the week for me were a trip to Plas Newyd (home of Eleanor Butler and Sarah Ponsonby, the ‘Ladies of Llangollen’) and hikes up Velvet Hill and to Castel Dinas Bran. For Dylan, I think, it was rides on the steam train and the experience of living in a cottage with a window seat view of the river and passing trains. He also thoroughly enjoyed our boat trips, picnics, canal walks and pub visits 🙂

 

 

And the people of ‘L’?  How did they react to the son’s condition, to the son as a person in the world?  With acceptance, kindness and love, as I so often find when I travel with Dylan.  The station volunteers returned his firm handshakes. Passing engine drivers waved to him each day. In cafes, pubs and shops, assistants listened carefully as Dylan had a go at ordering for himself.  He was helped into his preferred seat on canal boats and buses. When the heating broke down in the cottage it was quickly fixed so that Dylan could have his bath.  People could not have been kinder.

But it is easy to be kind when someone is happy and calm – the real test is when Dylan becomes anxious or frustrated. On our last day in Llangollen, there was a ‘Thomas’ event.  I was a bit nervous about it, thinking Dylan would not like the crowds and disruption to ‘his’ steam train. Sure enough, when we took the train one stop to Llangollen from Berwyn that morning Dylan flung himself full-stretch on the platform at sight of Thomas. Onlookers were shocked but not troubled or unkind: intuitively, they made space for Dylan to recover himself…

The Fictional Town of L

Census paints a rather different portrait of the fictional town of L. Their arrival in L represents a low point for the census takers:

As my son and I drove down the long slope putting K well behind us, I could see through the fogged glass of the window a long valley presented ahead and on either side.  The remainder  of our trip would be made in a sort of industrial hell interspersed with bands of what might be called wilderness, but what were, in essence, abandoned tracts, towns not thought worth exploiting, and the lands around them.

My condition pressed upon me as we went, and I felt again that we should stop, perhaps that we should even stop for some days, but the first motel we came to was filthy, and  though we bought a room, my soon would not enter it, and we ended sleeping in the car.

                                Will you please go in? Please?

                                He would not go in, not for anything.

The motel was the Leapley Motor Inn, and I confess that I did not want to sleep in the room either.

The next morning, we went to an apartment complex and knocked on the first door we came to.

My son and I had argued about whether people would be different here. Or rather, we both agreed they would be, but he thought they would be nothing like the ones before. I disagreed… (p. 164)

The father and son are increasingly isolated in L, spending time alone and sleeping in their car. The father is troubled by dreams of humiliation, torture and abuse.  He is dizzy and breathless.  At nights, he imagines the car is a coffin. Bleak as L is, however,  it is not terminal: the promise of M (and N and O and P…) still lie ahead for father and son:

There was nothing for it but to continue to Z. And at the same time, as my condition worsened, I felt sure that I would not make it to Z. What then? When there is nothing to do, you do what little there is – what little is left.  (p. 172)

Through the Triangle Window

The father and son do make it to Z. They arrived (by which I mean ‘I finished the novel’) on the last day of our holiday in Llangollen. My road trip with Dylan had provided the space I needed in order to understand and appreciate this very special book. A cover review declares:  ‘I defy anyone not to read its final pages through tears’. Dylan gets upset when people cry so I was glad for the secrecy of my attic room with its triangular window. My experience of the narrative became so powerful that I cannot separate this image from the father putting his son on a train in Z:

After many days, after an almost impossible distance, the train will stop at a little station near nothing. It will have to travel that far – until is almost near nothing. The train will halt,  grinding its metal brakes. The conductor will look around. The conductor will find my son in the seat he has chosen, a window seat from which he will be looking out. My son will be used by then to the traveling. He will have become fond of the train. The conductor will help him up, will get this bag. They will go together to the exit. During the trip, a trip that will last months, maybe even years, the conductor will have become fond of my son… My son will step onto the platform and stand there. He will stand there. The train will pull away.  (p. 240)

The Llangollen trains through my triangle window made the son’s metaphorical train ride heartbreakingly real. What they also made real, however, were the blessings received by the father during the journey they had taken together. Here he is in ‘J’ reflecting on he and his wife’s feelings about their son:

We felt lucky to have had him, and lucky to become the ones who were continually with him, caring for him. I have read some books of philosophy in which the freedom of burdens is explained, that somehow we are all seeking some appropriate burden. Until we find it, we are horribly shackled, can in fact scarcely live.  (p. 153)

Our trip to Llangollen ended with me feeling grateful for the fortune which had bestowed the ‘freedom of a burden’ through which I have learned to live (if not to die).

Note:

Census by Jesse Ball is published by Granta (2018).

 

Silver Linings

It’s a while since I posted an update about Dylan. I’m not sure why: life has continued its twists and turns, with plenty to reflect on as ever. I’d like to say that my silence here has been because I’ve been writing poems but I’m not sure that’s true. Work more likely 😦

Well, I’ve made a bit of space today for a quick post about  silver linings. As I type that I call to mind a favourite song which Dylan and I often listen to while driving so let’s have a burst of that first…

Silver Lining Number One

I often say that what matters is not the error but the fix.  When my students complete evaluation forms at the end of semester it frustrates me when they complain about a problem I thought I’d responded to during the module.  ‘Please don’t focus on the things that went wrong’, I want to say to them before they fill in the form: ‘think about what I did to make it better’.

Something went a bit wrong at Christmas when Dylan didn’t have a Christmas card or present to give to me. I had assumed Dylan would bring something home with him as this is what has happened every year since he moved to residential care.  I will never forget the impact of this the first Christmas; Dylan’s gift and card were completely unexpected and moved me to tears.  Before that, I had never received a present from Dylan that  I hadn’t chosen and bought myself.  The soaps and candles Dylan gave to me that year were the sweetest indicator of my son’s growing independence. Since then, Dylan has brought gifts for me every Christmas, birthday and Mother’s Day without fail.

So  I was puzzled that Dylan didn’t have even a card for me and sister this year. Dylan seemed conscious of his lack of something to give on Christmas morning; we have built a routine in the last three years for the exchange of gifts and something in Dylan’s body language made me imagine him anxious or sorry (though this could have been projection). I took the label off a Christmas hamper meant for my father and gave it to Dylan to give to me instead.

Afterwards, I wasn’t sure whether to say anything to staff at Dylan’s residential home or not. I felt a bit of a Diva complaining that I hadn’t had a Christmas present.  In the end I did, however;  the exchange of gifts with family and friends is important social learning which Dylan needs support with.  And I was glad that I did mention it as it turned out to be simply one of those things that had slipped through the net. They thanked me and assured me it wouldn’t happen again.

As I have observed, what matters is not the error but the fix.  After Christmas, parents were asked to send the birthday dates of family members for the diary. And here is Dylan delightedly clutching the gift he made for my February birthday. The new social enterprise coordinator, J,  is now supporting  residents to make their own presents. It’s a small thing, but a silver lining to a parent.

Silver Lining Number Two

As I’ve noted before, When Dylan is very upset he destroys the things he loves most. These incidents  – in which Dylan can become consumed with despair – arise, I assume, from our  failure to understand what he is trying to communicate. Dylan has, in the past, shredded cherished photographs, leaflets, Filofaxes, schedules, clothes,  books and DVDs.  Afterwards, when Dylan has calmed, he faces the additional distress of no longer having the comfort of objects which meant a great deal to him.

Over the years, there has been a lot of ‘re-buying’ of pajamas, books and DVDs. The ripping of PJs, in particular, has proved quite challenging.  Dylan is a man of taste;  his preference is for classic trouser and jackets, usually in good quality (but nonetheless rip-able) fabrics. At the end of last summer we decided to call a halt to the expensive replacement of PJs by keeping Dylan’s clothes drawers locked. He does still rip PJs from time to time but he no longer has free access to them for ripping sprees overnight.

When we moved to locking Dylan’s drawers I felt sad. It seemed to me a regressive step and a reduction in Dylan’s independence. Each time we have decided not to replace something Dylan has destroyed – a photograph album, a Filofax – I have felt the erosion of his independence and dignity in the loss of the object itself.  So it was with a heavy heart, following a particularly distressing incident recently, that I suggested the time had perhaps come to lock Dylan’s DVDs away.

There was something about restricting Dylan’s access to his DVDs which I found difficult.  He has his favourite films on his ipad (which Dylan has not so far attempted to break) but the DVDs serve a deep need which Dylan has for physical artefacts. He likes to look at the covers, open the cases, hold the discs in his hands – the pre-play rituals which Dylan associates with his DVDs can last for anything up to 30 minutes. Because of this way Dylan has of organising and handling his DVDs, I had never seriously considered limiting his access to them.

Once I’d accepted that a lockable cupboard was the only way forward, however, I decided I may as well commit to the project and take the opportunity to re-organise Dylan’s room.  The residential home donated a heavy duty, clear-view cabinet where Dylan could keep his DVDs. I took leave from work and spent a day shifting, scrubbing, polishing and sweeping.  Relocating Dylan’s (somewhat depleted) collection provided an alternative  space for Dylan’s books, allowing surplus shelves to be moved out of his room, creating a sense of light and space. This, I said to a member of staff who came to see how I was getting on, might be the silver lining.

Based on my experience of making changes at home I had decided it was probably best for me to re-organise things while Dylan was out.  If he could see my completed ‘suggestion’ he might accept the change but would almost certainly resist any moving of furniture if I tried to involve him in the process.  I wasn’t sure how Dylan would react to the re-organisation but was in no doubt that he would let me know if he didn’t approve. So I was a little nervous when I heard Dylan bounding up the stairs, returning early from his swimming trip. I hadn’t quite finished. I pushed a pile of rubbish out of sight, straightened his duvet, lined up his remote vehicles, sat Buzz and Woody on his newly-positioned chest. They can see the TV from there, I said to Dylan. You can sit here, look. And see: here are your DVDs.

Dylan’s eyes darted quickly around, taking everything in.  Then he smiled his silver lining smile…

Three Years and Three Months: A Mother Adjusting

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

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

Exhaustion

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

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

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

Involvement

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

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

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

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

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

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

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

Letting Go

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

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

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

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

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

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

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

 

Images:

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