Four is Better than Two

Posted in Environment and Community by

How come I’ve been drawn back into this nonsense anyway, I asked myself as Sheffield Wednesday conceded another last-minute goal in another pointless performance.  I thought I’d done with it in the 1980s. I had.  The explanation, I realised, is that games take place on Saturday afternoons. It was about filling the Dylan-shaped hole.

As I mentioned in my last post, separation is proving difficult for me as well as for Dylan. I’m still not quite sure what to do with my weekends. One thing I don’t want is to do things that Dylan and I used to do together.  That makes me feel guilty for being there without him. The drive to avoid shared places has at least shown me that I supported Dylan with a varied and active life. It’s quite a struggle to identify activities that don’t remind me of our weekends.  Hence Sheffield Wednesday.

When I mentioned this to one of the managers at Dylan’s new home she suggested that I join Dylan and his staff on trips out sometimes.  While I no longer have to provide activities for Dylan myself, there is no reason why I shouldn’t still enjoy days out with him. This won’t sort out weekends for me, but it might fill a bit of the hole. So, we agreed that once a month I would join Dylan and his staff on one of his day trips. I would alternate this with monthly visits to Dylan in his flat, with the focus an on-site activity. In this way, we would see each other every two weeks, in the home and community.

We trialled the idea on a visit to the Yorkshire Wildlife Park. Dylan had been collecting leaflets to show he wanted to visit, and as it was somewhere he and I used to go it seemed like a good place to start. On the day, I met Dylan and two of his support workers in the carpark. As soon as Dylan saw me he tried to get rid of Lydia and Bruce. I hadn’t anticipated this. Perhaps joint outings weren’t such a good idea. But Dylan‘s protests soon stopped, and the day was a great success. What’s more, by the end of it I’d discovered that a group of four has advantages over two.

Lunch, for example, was much more sociable. Instead of one-sided attempts at conversation, or eating in silence, a table of four meant there was a steady flow of language. Dylan may not use speech to communicate, but he enjoys listening to others and ‘comments’ in response by echoing back key words or gesturing. He is constantly alert to verbal cues. If someone says, ‘shall we get going then’, Dylan is likely to put on his hat and pick up his bag. Being immersed in language is of enormous benefit for Dylan but is not an environment that a sole carer can easily provide. 

The four of us walked two by two around the wildlife park. Sometimes it was me and Dylan, with Lydia and Bruce upfront or behind, and sometimes it was Dylan and Bruce, or Dylan and Lydia, while I hung back or went ahead. This forming and re-forming of pairings meant we were all able to take breaks, while Dylan received attention and support. For the first time in years I experienced the benefit of having someone alongside while supporting Dylan. Is it alright if I nip to the loo, I asked Lydia. It’s not school, she laughed. You don’t have to ask. I explained that I was used to having to take Dylan into a disabled cubicle with me. Going alone to the Ladies would be a treat. 

As well as social and practical benefits, being four rather than two brings opportunities for learning. When Dylan disappeared into the disabled facilities by himself, I rushed over to Lydia. I usually go with him, I said. She raised an eyebrow in surprise. Dylan manages by himself, she said. He should be out in a minute or so, Lydia reassured me, as I looked nervously at the locked door.  Have you ever had to crawl under the door to get him out, I asked. Lydia laughed. No, she said. Have you? Once, I admitted. Actually, I climbed over the door as the floor was icky. That was a long time ago though. When he was little. He’s not little anymore, Lydia reminded me. 

As Dylan walked confidently out, closing the door behind him, I remembered how he’d tried to push me out of the disabled cubicle the last time I’d followed him in. I’d been puzzled at the time, but suddenly it made sense. Of course Dylan doesn’t want his mother supervising him anymore. He knows how independence feels. When he needed help, Dylan tended to ask Lydia or Bruce. It was reassuring to see him developing his own support strategies, independent of me. Such skilful support as well, I conceded in the gift shop, as I watched Lydia explain to Dylan that as he’d already chosen white mice, he should put the sheep back on the shelf. Lydia was definitely better at negotiating chocolate boundaries than me.

All Things Pass

Posted in A Parent's World by

Since Christmas, my relationship with Dylan has entered a new phase. Now that Dylan is taken on trips and supported with interesting activities at his care setting, he no longer needs me to provide these.

After years of Dylan coming home for weekends, it’s a huge change for both of us. I’ve been finding it difficult to adjust, and a telephone call from Dylan’s support worker,  ‘Lydia’, brings home to me how much Dylan is struggling too.

Lydia tells me that one evening Dylan laid his clean clothes out on his bed. What are you doing, Lydia asked. You need to put those in your wardrobe. Dylan asked for the key to his storage cupboard, got down his overnight bag and packed his clothes. ‘Home’, he said.

He says ‘home’ all the time, Lydia tells me.  Or your name. Try not to worry, she says, as a sob escapes and I moan softly. It’s early days, Lydia reassures me. He’s happy here. But we need to find out what it is about home he is missing. 

I love the way Dylan’s new staff think creatively.  At his previous place, I’d have had a phone call telling me Dylan needed to come home for the weekend because he wasn’t coping. What does Dylan like to do when he comes home, Lydia asks me. Tell me about the time you spend together.

As I talk through Dylan’s home routine, we find some possibilities. I point out that Dylan  might be missing his iPad. Lydia thinks it might be the laminated photo of his Gran he keeps at home.  I can bring those across next time I visit, I tell her.  

Perhaps Dylan is missing our local walks, I say. Or the peace and quiet of being at home for the weekend. Time away from other residents.  That’s interesting, Lydia says.  We could take him to a Premier Inn every so often. Dylan would love that, I tell her.  

Next day, I relay the conversation to my daughter. She listens while I run through the list of things her brother might be missing before gently interrupting me. Childhood, she says. I think that’s what Dylan is missing. 

Childhood?  Something abstract and non-deliverable.  Wouldn’t that be just like Dylan? And just how am I supposed to respond to that, I ask my daughter.  Just keep doing what you’re doing mum, she says. All things pass.

                                                                         *

Last summer, while I was looking for somewhere else for Dylan, I put my house on the market. I was humbled and  impressed by the way that Dylan had handled the upheaval in his life.  If he could move somewhere new, I told myself, then so could I. 

If coming home is a return to childhood, perhaps my upcoming house move will help Dylan and I to separate. In my next post, I’ll reflect on the particular challenges of parental separation from a disabled adult. This blog may be drawing to a close after that. All things pass.

Last week, I decided to write about being a writer instead of a caregiver. If Dylan is becoming independent from me, then I must do the same, I told myself. Dylan still found his way into it, of course. Our lives may be separate, but they will always be intertwined.

https://peakwoman.substack.com/p/second-act-first-draft?r=3gctz2

Who Speaks for Dylan? Autism, Charity and Advocacy 

Posted in Policy and Provision by

When Dylan was allocated a place at a National Autistic Society (NAS) home in 2015 I felt a huge sense of relief. He would be cared for by a specialist organisation which provided cradle to grave support for autistic people and their families. As a charitable organisation, it would focus on the needs of the people it supported, rather than the demands of shareholders. Dylan would have access to a network of national expertise, resources and provision. Providing funding wasn’t discontinued by the state, I no longer had to be scared to die. 

Dylan’s subsequent experience would challenge my beliefs about the NAS. It is almost a year since he was evicted without discussion, explanation or reasonable notice. I have tried to record the impact of this process on us in order to capture the experience of disabled people and their families over the life course. In this post, I draw on our experience to reflect on the role of the charitable sector in the provision of care and ask how we can ensure disabled people who lack capacity have access to appropriate support and advocacy.

The National Autistic Society

The NAS was founded in 1962 by a group of parents whose children had received an autism diagnosis. The aim of the organisation was to provide support to families with children with what at the time was referred to as ‘Classic Autism’ or ‘Kanner’s Syndrome’. These children frequently presented with co-morbid conditions such as intellectual disability, epilepsy, and communication impairment and some demonstrated challenging behaviours.  Such children need specialist and lifelong support, from cradle to grave. This is what the group of parents were hoping to achieve for their sons and daughters – the gift they wanted to bestow on their own and others – when they founded the NAS as a parent organisation and charity.

Fast forward to the Twenty-Teens and a different landscape had emerged.  The categories of Kanner’s Syndrome and Asperger’s Syndrome (at the other end of the autism spectrum) were collapsed into a single condition (DSM-5, 2013), a development which many would argue has not helped people at either extreme. While it’s always possible to find things which connect people, it is at the points of divergence that we need specialist voices and support. 

Naturally, my concern has been with the ways in which the shift to the label ‘autism spectrum condition’ has created difficulties for Dylan. I would argue that it has had an unhelpful impact on the representation, and ultimately access to resources, of autistic people with comorbid intellectual disability. This is the case, it seems to me, even within the charity that was originally established to advocate for them. 

Autistic people who are able to speak for themselves are uncomfortable with a national autism charity speaking for them. They particularly don’t like the involvement of parents. Who can blame them? Adults who can make their own decisions don’t appreciate parents butting in unasked.  Neither do self-advocating members like the idea of residential care for adults. Naturally, people who are capable of living independently wouldn’t want that. They don’t like the idea of specialist schools either. Autistic children should be in mainstream. 

I get this. But when I hear these arguments, under my breath I counter  – ‘autism isn’t only people like you, it’s people like Dylan too’. No one is trying to corral autistic people who have mental capacity and can self-advocate into a specialist school or residential home or insist that a parent speaks for them.  These are things that autistic people who have comorbid intellectual disability need. Adults who lack the capacity to make decisions for themselves or to live independently. People like Dylan. If you take away specialist schools and residential homes for adults, if you insist on self-advocacy, what will become of Dylan?  In order for you to speak, you shouldn’t have to silence him. Why take away his voice?

There has never been much research or airtime devoted to people with intellectual disability and autism.  People like Dylan can’t do their own research or give their own papers.  Their families and carers are mostly exhausted and under resourced. Academics can’t easily get access to these most complex of cases. A few people who straddle both worlds (parent and professional) try to keep their interests on the research and media agenda. But our voices aren’t as powerful as those who self-advocate. 

Changing Charity

The NAS is uncomfortable with its past. It is a member organisation that has changed its membership.  It needs to satisfy its increasingly vocal lobby of self-advocating members.  Now, it is staffed by autistic people, its agenda set by its self-advocating membership. Its legacy provision is an embarrassment. It would be easier if some of it didn’t exist. Schools. Residential homes. Respite care. They are closing them down. Repurposing them.

I usually don’t refer to Dylan’s co-residents in my posts, but it’s relevant to note that Dylan wasn’t the only person at his NAS home to be served with an eviction notice. There had been three others in the years immediately before him. Two had lived there longer than Dylan (the three of them had been together at an NAS school).  All young men.  All spirited. All needing creative and intelligent care. All happy until they weren’t.  All replaced by more, shall we say, compliant residents. A different profile anyway.

When I checked the CQC website the other day, I could find no reference to autism on the entry for Dylan’s NAS home. It is described as providing ‘Accommodation for persons who require nursing or personal care’ and ‘Learning disabilities.’ No wonder it didn’t suit Dylan. But that’s not the provision I identified for him nine years ago. When did it change?  And why? 

It’s The Economy, Stupid

The NAS is a charity, right, I said to one of the  support workers in the days before Dylan left.  A charity? She replied. No, it’s a business. Definitely a business. I’m not in a position to evaluate the economic case for evicting Dylan. I was never told what the organisation had paid out to settle claims brought by staff, but one unredacted document I saw referred to updating the insurance policy once Dylan had moved out. If you get your recruiting and training right, I suggested, you won’t be in that position.  What Dylan needs is experienced staff and stimulating activities. There were problems recruiting staff I was told. 

I don’t know if that is why Dylan was evicted – that he didn’t fit their business model in terms of staff costs –  or if it was because he didn’t fit their mission statement about which autistic people they are designed for. Either way, I’m left wondering why it is that the NAS should be eligible for the 15% tax break for charitable organisations. If the NAS are picking and choosing which autistic people they want to support – leaving other organisations to support those with more complex needs such as Dylan – why should they get the tax break while other care organisations don’t? The Labour Government has removed the tax break from private schools. Why not review the eligibility of organisations like the NAS?

The Gaps

While the major autism charity is declining to care for adults like Dylan (and closing resources for children and adolescents such as schools and respite care) who is filling the gaps? Families. Pockets of state provision. Private organisations. We have seen some terrible consequences of leaving the most vulnerable in society to be cared for by private organisations, or by unsupported families or inadequately funded state organisations, but Dylan’s current experience leaves me optimistic about private care. Dylan’s new home is beautifully appointed. He is supported by trained staff with access to clinical expertise and resources. He is following a programme of stimulating activities.

What I don’t understand is why the NAS should be able to claim a tax break while Dylan’s current provider can’t. Both organisations are facing increased staff costs due to hikes in National Insurance contributions and improvements to the minimum wage. Job losses and care home closures are predicted across the sector as a result of the Budget.  Keeping staff costs down while providing a living wage and decent pension plan has to be the first step in addressing the care crisis. So (as a small contribution) why not review the tax relief arrangements?  

A charitable organisation that is claiming a tax break should be able to demonstrate what it is they’re doing to earn it. I’m sure that the majority of charities are, but some might be prompted, as a result, to review their policy and practice. Perhaps tax relief could be given to organisations working with those with the most complex disabilities, or to incentivise provision where there are gaps. Just as the revenue from closing the tax relief loophole for private schools will (we’re told) be applied to improving state schools, so the extra tax raised could fund the care of the most vulnerable others.

Advocacy

A friend sent me this interesting report by Lambeth Palace Church Commissioners:  Care and Support Reimagined:  A National Care Covenant for England (2022).  It’s a marvellous reimagining, and I read it with awe. I was also, however, dispirited. This is not a model of care that Dylan could access. This is care for people who are happy to grow vegetables (and eat them), who probably speak, who can almost certainly participate in decision-making, and who would certainly never bite. I can’t imagine Dylan fitting in there. 

I’m not saying this is not a valuable model of care. I’m saying that someone has come up with a blueprint of care and will now need to look for people who will fit into it. Some members of our society are so profoundly disabled in such individual ways that the starting point has to be them. Without speech or mental capacity, they need somebody to argue this for them. Who will do that?  Who is going to speak for Dylan and his extraordinary peers?

Seen and Heard: Two Reviews

Posted in Policy and Provision by

The annual report I have to submit as Dylan’s Deputy coincided last month with a three-month review of his new placement by the care funder. Based on these reviews, this post offers reflections on the role of deputy and compares Dylan’s experiences of two care providers. 

Being Seen

I noted in my annual review to the Office of the Public Guardian (OPG) that things are going well for Dylan in his new placement and that his quality of life has improved. It’s wonderful to see Dylan happy again, I reflected, after a difficult and distressing period at his last setting. I thanked the OPG for the support they had provided during this time and reflected that their guidance had given me the confidence to challenge the National Autistic Society (NAS) for the way they had treated Dylan. I also noted, however,  that the experience had left me with concerns about the role of deputy. One of the reasons I applied for it, I explained:

was so that decisions couldn’t be made about Dylan without input from someone whose specific role it is to represent Dylan, i.e. not the care provider or the care funder. However, my being Dylan’s deputy made no difference in this regard, even though I had repeatedly reminded the care setting of my role.

A key outcome of my complaint about the NAS was that training would be provided for managers to ensure that significant decisions about care are not taken without the involvement of a deputy in future. However, I reflected, might Dylan’s experience suggest a need for broader awareness raising across the sector? To be fair, the other organisations I approached while trying to identify alternative provision for Dylan were familiar with the deputy role and included reference to it in their policy documents.  However, the NAS are a major autism charity and their ignorance of (or disregard for) the role is a concern.

I was impressed that the OPG followed-up my report with a telephone call, the outcome of which is a future meeting between myself, the OPG and Dylan’s new placement setting. The setting where Dylan now lives are accustomed to working with parents who are also deputy so not in need of support in the way that the NAS are. Still, I was impressed (once again) by the quick response of the OPG and the support they provide to deputies. When I received a follow-up letter, it struck me that as well as being a source of support for Dylan, they offer affirmation to the parent/deputy. Dylan’s case worker reflected:

It is clear you are acting in Dylan’s best interests and that you take great care in his wellbeing. I am pleased he is settling in his new home and that he now has an improved range of activities. I understand Dylan’s move was challenging, however I note you are a strong advocate for him and ensure he is able to live a varied and fulfilling life. 

Dylan had been seen. I felt seen. This meant a lot. I would urge anyone in a similar position to myself and Dylan to apply for deputy status. The annual reviews are helpful, and the support is excellent. If (in the worst-case scenario) you find yourself dealing with an organisation that disrespects the rights of your family member, you will be in a stronger position to challenge them. Of course, we ought not to have to be deputies in order to be involved in significant decisions about the care of our family members, but my experience suggests that even apparently reputable organisations can fall short. 

Being Heard

Dylan’s new placement would not be confirmed, I was told, until it had been reviewed by the care package manager (i.e. the funding body) following a three-month trial. The fact I approached the meeting feeling more relaxed than I had for any previous appointment is the best indication of how things seemed to be going at this early stage.  I’d had contact with Dylan and received regular updates about his health and activities by email and phone. I was confident that all was well and that, this time, there would be no surprises. What I wasn’t prepared for was just how positive the reports would be.

It’s hard to describe the joy of hearing from people who seem to genuinely enjoy working with Dylan. People who, in a short space of time, had come to know and understand him: I smiled with recognition at the description of Dylan as mischievous, funny, tactile, curious and clever. Staff in the meeting related anecdotes about Dylan’s time at the setting with evident pleasure. He’s been driving around having a great time, a member of the team reported. Durham, York, Whitby, a support worker chipped in. ‘Where’s Dylan today? ‘, people ask me, the team leader laughed. I don’t really have much to say, the behaviour coordinator, replied when it was her turn.  There haven’t been any incidents.

The transformation in Dylan is extraordinary but his move has also had a positive impact on me. I no longer feel under pressure to support Dylan with activities as these are now being provided. I don’t feel the need to bring him home at weekends. I am finally able to take a step back and allow others to care for Dylan. When I do visit, or collect Dylan for an overnight stay (once a month each alternately), I no longer feel anxious as I drive into the setting. Encounters with staff don’t leave me frustrated and upset. I don’t have to take out my notebook and make a list of the problems to be followed-up after my visit. The constant flow of emails with distressing reports of Dylan’s behaviour has stopped.

I’d been concerned, in the days after Dylan moved to his new placement, not to receive any such emails. I assumed I wasn’t being kept informed. What is worse, I asked myself, daily reports of problems or no reports of daily problems? What a relief it was to discover there simply wasn’t anything to report. And if something did happen, the manager reassured me, staff were trained to provide support. I felt a weight had been lifted from me. I was no longer responsible. I had been suffering as well as Dylan and I’d had no idea. 

Three months later, Dylan and I are both much better. There are nine aspects of care, I suggested at the review, that are responsible for this improvement in our lives.

  1. Personal Care Dylan’s flat is beautiful and is impeccably kept. His clothes are washed, aired and organised  (I would find them stuffed in damp and dirty bundles previously). His hair and nails are cut. Dylan has had a sight test and now has spectacles for watching TV (he won’t wear them yet, but I’m enormously impressed this has been done). The standards of personal care are equivalent to those I apply in the home. I never thought I’d find this in a care setting. These might seem small things, but they are about treating a disabled person with respect and dignity. This makes me very happy. I am convinced that Dylan feels it too.
  2. Restrictions Dylan’s clothes, food, DVDs and toiletries were locked up at his previous setting, but he has free access to everything at his new home, without incident or concern.  I suspected the restrictions made Dylan anxious and were part of the problem, not the solution. So far, this seems to be borne out.
  3. Staff  One of the most striking things about Dylan’s new placement is that the staff I encounter are always smiling and seem happy in their work. They engage with Dylan, talking to him rather than only to each other. They don’t wear protective clothing.  It’s a lovely atmosphere and has a positive impact on my mood in the brief times I am there.  It must surely have an impact on Dylan’s sense of self and esteem.
  4. Management They have never once problematised Dylan. If something goes wrong or doesn’t work as planned, they think creatively and try again.  This is exactly the approach I favour.  Think like a detective. Walk in Dylan’s shoes. Figure it out. This is the way to work positively and effectively with someone autistic and with limited communication who lacks capacity. We have to look to ourselves and to the environment for the problem, rather than to Dylan. What a relief it is to know that Dylan will not be blamed, and restrictions imposed, when things go wrong.
  5. Partnership In the review I referred to the impact on me of Dylan’s previous placement being terminated without my involvement or knowledge. The experience had destroyed my trust. I found myself suspicious of professionals. They had become adversaries rather than partners in Dylan’s care. Perhaps the most valuable outcome of Dylan’s first three months, I suggested, is that I had started to trust the staff and management. My confidence was being rebuilt.
  6. Activities  Except for some local walks, Dylan’s activities had stopped at his previous setting. Managers and staff refused to take Dylan into the community or to drive him in his car.  For a lively, active, curious and intelligent young man, this must have felt like incarceration. No wonder Dylan was distressed. The activities listed at his three-month review are breathtaking: day trips to his favourite cathedral cities and seaside towns; regular swimming; visits to museums and restaurants; tickets booked for Disney on Ice; and a holiday planned. 
  7. Relationships An even deeper exhale of breath at the report of peer activities and events: Dylan has joined groups for trips to the disco, kayaking, parties, film club and walks. It is wonderful to see Dylan joining in with social activities and settled in a group house, no longer isolated in a separate building.
  8. Behaviour Incidents of behaviours that challenge will not disappear completely – Dylan wouldn’t need a specialist setting if they did – but three incidents in over three months has got to be good. Perhaps the number is as low as it is because minor issues are not treated as ‘incidents’ but rather a part of his difference. Anything that causes concern is reviewed from Dylan’s perspective so that things can be done differently. This is surely how things ought to be?
  9. Independence  ‘I love how independent Dylan is’, a support worker said to me as he moved around his flat, doing his chores.  ‘He only needs a verbal prompt from me.’ Off site, Dylan’s car is in constant use. The moment I knew the Motability vehicle had given him independence was the day he walked towards it without a glance at mine, parked nearby. That was his car now: the blue one.

At Dylan’s review I felt heard. Through my voice – and the voices of others – Dylan was heard. At Dylan’s previous setting, his voice and mine had been ignored. When I’d requested different provision for Dylan years before he was evicted, no one listened. When a decision was taken to evict Dylan, we weren’t involved or informed. When a parent (or deputy) suspects a setting isn’t providing adequate care, how do we get someone to hear? How does a parent ensure they are involved in the care of a family member? My experience suggests the answer is ‘with difficulty’. My reflection that a parent’s work is never done will surprise no one, but at least we receive moments of pause from time to time. I will try to enjoy mine.

Biting The Hand That Feeds You

Posted in A Parent's World by

The words ran through my head as I cried quietly in the staff office next to Dylan’s new flat. Whatever rationale I’d built for the first bite was in ruins. Only the second day of Dylan’s fresh start and I’d been bitten again. 

I used to think staff who got hurt must have made some sort of error. That they hadn’t understood Dylan’s attempt at communication, had rushed him from an activity too quickly or not allowed him to follow a preferred routine.  I replayed my steps. How I’d walked into his flat  – a clothes airer in my hands, taking the wrapping off for him. I tried to remember what I’d said. My voice. It had happened so quickly.  What did I do wrong?  

A support worker put her head around the office door to check I was alright. He really targeted you didn’t he, she said. I stared speechless, momentarily stunned.  Had Dylan targeted me? Really? It’s true that he’d marched past his support workers, grabbed my hand and sunk his teeth in. Perhaps he had targeted me. 

I used to think it could never happen to me. After the first bite, I had to accept that being Dylan’s mother didn’t provide magical protection. There was no iron dome around me.  I was as likely to get bitten as anyone else. Now I had to face the possibility I might be more likely to be bitten than someone else.

How could Dylan not realise I’m the best thing in his life? The person who will always support him. The one who has his back.  How could he forget that I’m the one who understands him best.  The person who will never leave him.

I felt like leaving now. I thought of everything I’d done.  The months of pursuing a complaint against the NAS for the way they’d treated him. The hundreds of emails, phone calls and letters. The days spent on the internet, researching.  The visits to settings. Miles of driving. Me, holding out for the best. The days turning it over with friends, walking and talking. The sleepless nights. [Oh yes, those] The highwire act of a decision, finally. The organising. The planning. The cancellation of holidays and events.  The two weeks I spent writing manuals, explaining how to support him. The move itself.

I could  just walk out of here now, I thought. Not come back.

*

Why didn’t I sit for a while, the team leader suggested. If you rush away, he said, it will come with you. If you stay, you can move it on. Take something else away instead. So, I sat for a while. People comforted me. A hug. Kind words. Ways of wearing Dylan’s shoes.  He’d been awake all night, one member of staff said. He must be exhausted. He will be anxious, another said, wondering where he is and what is happening to him. Tell me something about Dylan, the team leader said. What does he like to do? What makes him happy. I’ve written some manuals, I told him. I know, he said.  But listening to you talk about Dylan will help me understand.  

It helped me too.  I was reminded of Dylan’s strengths and vulnerabilities. How much he has to give and what he needs from us. I think I’d like to go and see him now, I said. If that’s OK. Start again. So, I walked along a local trail with Dylan and his support workers, watching as Dylan instinctively found his way to water. I stayed while he cooked and ate his tea  –  smiled when he turned to high five me as the confusing unknown of his second day settled towards evening. I left him at Film Club soon after, sprawled on a big sofa, watching his beloved Peter Pan. 

Remember this, I told myself as I drove home, clutching the wheel with three fingers. 

*

I would need to get antibiotics I decided next morning. Human bites are worse than animal bites because of the bacteria in our mouths. The first bite had been so severe I’d spent a night in hospital, my right arm suspended above my head to drain the infection.  Nerves run down the sides of our fingers before feeding into a myelin sheath in the hand. I would need a procedure in the morning to wash mine out. The consultant was being cautious, he explained, because there was a risk I could lose the use of my hand. The second bite was nothing like as bad, but I recognised the signs of infection. 

The wounds were less severe this time because staff had been there to intervene. The first time, I’d been alone with Dylan at one of his favourite museums, over an hour away from the care home where he lived.  I still don’t know what triggered Dylan to bite me that day. Afterwards I wondered if it was a sign he was stressed about the situation at the care home, although staff insisted he didn’t know anything. It can’t be that they said. 

Even so. It’s hard to pinpoint what else it might have been. Dylan had been requesting a visit to the museum for weeks. Everything had run like clockwork on the day. We’d arrived at the time I’d planned. Our tickets were booked.  Dylan’s schedule showed his usual routine of lunch on arrival.  But as we were about to go in, he leapt frantically into the air.  Afterwards, I wondered if it could have been the stamp on the back of his hand. I couldn’t remember whether that was something he’d had before. It had felt a bit like a tiny needle on my skin when I’d had my hand stamped.  Could it have been that?  

Whatever had triggered the wild jumping, I knew I couldn’t let Dylan continue in a foyer full of children. Arm-in-arm, I walked him swiftly outside. And that’s when he lifted my right hand to his mouth and sunk his teeth in. I gave verbal commands. Tried to prise his teeth from my finger. I didn’t have any strategies for defending myself from a bite [I do now:  I’ve googled them] so I just kept walking with Dylan’s teeth locked on. As we neared the car park, Dylan let go and said the name of the museum, asking to go back in.  No, I said.  Not now. He locked on again.  Same finger.  

I bundled Dylan into the car and stood in shock, watching dark red blood drip from four puncture wounds on my right  index finger.  I tried to unwrap my tissues but was trembling so much I dropped them in the dirt.  I asked a couple with a baby if they could help. They looked askance at my explanation – my son had bitten me – shoved a tissue in my hand and walked quickly away . That’s when I felt the stirring of a deeper wound. Not my bitten finger, but the implications. As I telephoned the care home to ask if a member of staff could pick us up, I knew this would be the end of the life that Dylan and I had lived.  I wouldn’t feel confident about supporting him by myself again. No more holidays or trips. Maybe no more home visits. I felt indescribably sad. Not only was Dylan going to be moved from his care home, now he had lost home life as well. 

By the time staff arrived my hand was inflamed and red. A support worker put protective clothing on before giving me first aid. I wasn’t sure if it was me or Dylan he considered a risk. I watched Dylan being moved from his car to theirs, clutching his CD collection. Someone would drive me in Dylan’s car, I was told. I saw Dylan twisting in the back of the vehicle as he left the car park ahead of me. Nothing good will come of this, I thought. When Dylan arrived back at the care home (after me) there’d been an incident. it’s only plastic, a care worker said, as he swept broken CDs into a bin bag. That music collection was his most precious possession, I countered.

It was foolish of me not to travel with him, I reflected afterwards.  But I wasn’t thinking straight. I was in shock. At least this time the situation had been contained. Good decisions had been made. And my injury was definitely not as bad as before.  I dialled the doctor’s surgery. 26th in the queue. How was that even possible at 8am? As I waited my turn I thought about what the support worker had said. That Dylan had targeted me. Perhaps she was right. After all, that’s what we do when we feel anxious or stressed. Hurt the person closest to us. Bite the hand that feeds us. I did it to my mother. My daughter does it to me.  So why not Dylan?  If he did target me, perhaps it’s because he recognises that I’m his ally. The person who will always support him. From a place of anxiety and confusion, he lashed out at me, because he knows I’ll never leave, not turn my back. I am the person who fixes things.  His mother.

I used to wonder if Dylan understood that. It took a bite to show me he does.

*

Actually, I had fixed things for Dylan, he just didn’t know this at the time. Why would he know,  having been moved, without warning, to an unfamiliar place among strangers. It has been wonderful to watch Dylan develop positive relationships with staff and peers and settle confidently into his new environment.  Dylan is once again doing the things he loves, as well as being supported to try new activities and experiences.  As I listened to glowing reports from everyone in the room at a recent review meeting, I couldn’t have been prouder of the brave way Dylan has embraced his new situation. Silver linings.  I did keep faith, most days, that there would be one.  

And here is another, quite random and unexpected. After the first bite, I was referred to the Hand Clinic at the Northern General Hospital for further assessment and from there to the Department of Occupational Therapy. When I arrived for my first appointment at OT my finger was still swollen. I had developed the habit of not using it, my pointy finger sticking out at angles from the rest of my hand, excused from duty. No bending, holding, tapping, swiping or even pointing. 

The OT measured the circumference of my finger and compared it with my left hand.  He drew a picture and indicated the points of healing and concern. He explained the touch and massage therapies I needed to be using on the scar tissue and areas where I had lost feeling.  As he wound Coban tape around my finger, I asked whether he had always been an OT. Yes, he replied, mostly in Bangladesh at the Centre for the Rehabilitation of the Paralyzed. There is no National Health Service there, he reminded me, but there is great need. We chatted about provision for the disabled and I explained about Dylan. I liked his calm, steady manner and the way he paused to think before he spoke.  At that first appointment we spoke of many things (but mostly of Rabindranath Tagore).

I arrived for my follow-up appointment feeling sheepish. The second bite had undone some of the progress I’d made with the exercises.  I’m afraid I’ve used all the Coban tape you gave me, I told S.  I explained what had happened. Perhaps I saw one eyebrow raise slightly, but it could have been my imagination. This man was the epitome of Zen it seemed.  S measured my finger and nodded.  Good.  There had been much improvement, even with the new wound.  Also, had I considered that I might go to the Centre in Bangladesh he had told me about last time.  An increasing number of the young people they work with are on the autistic spectrum.  There is a need to develop liaison with their families and to improve understanding. They provide accommodation for volunteers, if this was something I might consider.  I am happy to discharge you, he said, passing me a name and email address.

So, after a conversation with the Director of the Centre, I’m in the process of applying for next year. Apparently November-March is the season to go, given the weather.  I love that being bitten led to a chance encounter and this unexpected opportunity.  A silver lining indeed. The time commitment for short stay volunteers is one month.  I have never before considered being parted from Dylan for any such time. The fact I feel able to do this now is entirely due to the silver lining of Dylan’s new home.

Note:
Apologies for the photos of my injuries which are badly composed and out of focus. I didn’t realise until afterwards how helpful photographic records are to clinicians. Next time I’ll document such things more carefully 🙂

Transparency

Posted in Language and Communication by

The quality of Dylan’s life has improved dramatically since he moved to his new setting seven weeks ago. He’s developing positive relationships with staff and participating in a range of activities, sometimes with peers. He has a regular swimming session and there are plans for a day at a waterpark next month, as well as cycling and trampolining. Last week, apparently, Dylan had a day in York. These are the sorts of activities which Dylan loves, and it’s wonderful that he’s getting back to them. 

It’s also good to see how relaxed Dylan is in his new flat. There are no restrictions on his access to food, toiletries, clothes or DVDs (as there were previously) and so far there have been no issues.  It’s nice to not need a key, I said, as I helped Dylan pack his bag for his last home visit. Most of the things we were led to believe by [previous care home] have turned out not to be the case, the support worker replied. 

One of the difficulties before Dylan arrived, she reflected, was the conflicting advice.  Dylan’s previous place told us that toiletries had to be locked up. Then we were told something different.  We had no idea what we were supposed to do. That was probably my fault, I confessed. I didn’t agree with the restrictions. I thought they were part of the problem, rather than the solution, so I produced my own care guides. I’m sorry you had such contrasting accounts of Dylan, I said. I can see that must have been difficult. 

I’d been impressed by how creatively staff had responded to the situation. For example, Dylan’s previous care setting had said access to toiletries needed to be restricted, as Dylan would decant them.  I insisted that there was no reason for toiletries to be locked up. The solution suggested by Dylan’s new setting was to purchase individual (hotel-sized) toiletries. When Dylan was fine with these, full-sized toiletries were introduced.

The problem, the support worker said, was that there was no transparency. We didn’t know what was going on. We didn’t even get to meet Dylan. That’s partly because he didn’t know he was moving, I said. That’s terrible, she said. Dylan had a right to know.

Speculation

The decision not to tell Dylan should hardly be a surprise.  The entire process was characterised by lack of transparency. As noted in a previous post, the Panel who met to consider the case for Dylan’s move asked for clarification as to why Dylan’s current provider could no longer meet need. This wasn’t specified in the termination of contract letter, they pointed out.  In fact, a reason for terminating the placement was never provided, and my requests for this to be explained were ignored. 

One of the problems with such a lack of transparency is that it leads to speculation. This is sometimes accurate but can also be wildly off beam. Without transparency, the possibility that the truth may be too uncomfortable to acknowledge is also ever-present.  My speculations about the reasons for Dylan’s eviction illustrate this.

  • The NAS were problematising Dylan rather than addressing the inadequacies in management and staffing that had led to failings in care.
  • The NAS didn’t want any more compensation claims by members of staff alleging they had not received adequate training to support Dylan.
  • The NAS are moving from a model of supporting families with severely autistic children/adults in residential settings to supported living facilities for self-advocating autistic adults, and Dylan no longer fits their target profile.
  • Dylan’s NHS care package manager and his care home manager had agreed between themselves that Dylan’s place would be terminated so that he could be moved somewhere cheaper.
  • The care home manager suspected it was me who raised concerns with the CQC (leading to the unannounced inspection outcome of ‘requires improvement’).
  • The care home manager was irritated by my advocacy for Dylan and riled that I didn’t allow her to influence my choice of Motability car.

The last of these possibilities (which I wrote about here) was clutching at straws, but a friend and I were trying to make sense of the news that Dylan had been evicted.  Clearly, the suggestion is bizarre, but this is what happens in the absence of transparency. In the end, having  received no response to my emails asking why Dylan’s placement had been terminated, I asked a member of support staff one weekend.  It’s because of the biting, he said.  That’s what people are saying. 

Significant information about vulnerable adults should not be communicated to family members by support staff. Informing staff while withholding information from the disabled person and their family, is unethical and unprofessional. Fortunately, the support worker was understanding and sensitive. He was sorry about the decision, he added.  As far as he was concerned, Dylan was a top man. He had never had any problems with him. Dylan doesn’t bite, he said. 

The Man

As anyone raising children or working in education will know, we focus on the behaviour not the child when managing problem behaviour.  Rather than talk about ‘naughty children’ we name the undesirable behaviour. Teachers are encouraged to examine their own practice. Could the unwanted behaviour (whether it be talking out of turn, interfering with another child or leaving the classroom) have been triggered by the environment or activity?  Could these be organised differently to reduce the behaviour? 

Sometimes, a child has circumstances which increase the potential for challenging behaviour. A family bereavement let’s say. Anxiety or ADHD. Hunger or fatigue. When my daughter was five, she would come home from school some afternoons and tell me that her best friend (let’s call her Lion Girl) had bitten one of the boys again.  It was only ever the boys and (I used to speculate) perhaps a reaction to their teasing her for being short. There’ll be a reason, I used to tell my daughter. She’ll grow out of it.

Dylan, by contrast, grew into it.  It’s a behaviour that emerged in his mid to late 20s, after he moved to his previous care setting. However (I remind myself sometimes) cognitively Dylan is around five years old, the same age as Lion Girl. Perhaps Dylan will grow out of it too?  Do autistic adults with severe learning disability continue to develop cognitively? Is it reasonable to expect some socio-emotional maturation? That there will be a change in the strategies Dylan has available when he feels threatened?

When he feels threatened? Well, yes.  I’m guessing that is one of the reasons he bites (as presumably it was for Lion Girl). A five-year-old child and 30-year-old man with a learning disability share some features.  They both have limited communication strategies (for Dylan, this is especially pronounced). They may both struggle to self-regulate. They are both in the early stages of independence (at school or in a residential setting) without family on-hand. They may both feel overwhelmed by an environment and activity over which they have little if any control.

Of course, there are some key differences.  Most obviously, being bitten by a small child is quite different to being bitten by a six-foot man, as are the strategies available for addressing the behaviour. Without an appreciation of the impact of his behaviour on others, or the language with which to discuss it, Dylan cannot be spoken with about the behaviour afterwards, as a child might be. Still, beneath these differences the child and man are linked by their use of behaviour as an attempt to communicate. Biting is an expression of an emotion. We have to see the behaviour, not the child or the man. 

The Behaviour

I was glad the support worker observed  ‘Dylan doesn’t bite.’  Afterwards, I asked to see the incident reports for the behaviour. I’d never experienced it myself or considered myself at risk. Once, some years before, I’d intervened when Dylan had grabbed a member of staff in the car park, but that was the only attempt to bite I’d witnessed. On that occasion, my little finger got (inconsequentially) caught in the fray. For weeks afterwards, Dylan would demand to look at the finger when he saw me, a mix of remorse and amusement in his manner I found a little alarming. But that was all I’d seen.

Of course, I was aware of the reported attempt to bite during the incident with the handcuffs and sweets. I’d also received occasional reports of the behaviour over the years. When I reviewed the data it indicated an average of two biting incidents a year over the previous eight years, with a spike of five during the covid-lockdown period, prior to the onset of epilepsy. That didn’t seem extreme in the context of a non-speaking man with severe autism and learning disability. 

But we can’t make a case for or against the provision of care by numbers, as I’ve argued elsewhere. What matters is context. What were the circumstances of these incidents? Unfortunately, most were recorded as ‘no apparent trigger’. The fact staff couldn’t identify antecedents does not of course equate to the absence of a trigger. Behaviour is functional and there is always a reason for it. Here are some random (purely speculative) possibilities:

  • He is frustrated about something he cannot control (e.g. a flaky internet connection)
  • He is overwhelmed by an environment (smells, sounds)
  • He is angry at our failure to understand his previous attempts at communication
  • He is anxious about the scheduling of a person or activity he dislikes
  • He is confused by a lack of clarity about a transition or future event
  • He is threatened by a situation in which he feels unsafe (dogs, fairground rides)
  • He is in pain or in some way physically distressed
  • He is bored (no activities, lack of variety, activities in which he has no interest)
  • He is protesting about his life

While none of these justify the biting, they offer ways of understanding it. Shouldn’t an autism-specialist care setting have been able to see this?

Not Seeing

Initially I had agreed to the suggestion that we didn’t tell Dylan about the move but quickly became troubled by this. Explaining the move to Dylan would be challenging, without language, but withholding the information would cause confusion and anxiety later. I worried that not being open about the move would undermine Dylan’s trust in me.  I’ve worked so hard to gain Dylan’s confidence over the years. Surely not being transparent about what was about to happen would put this in jeopardy. 

As Dylan may not be able to process a social story, I suggested that his things be moved to the new home gradually.  We could take the larger items and his pictures, leaving Dylan with essentials such as his TV and DVDs. If Dylan visited the new setting and saw some of his things in situ, that might communicate the move in a more concrete way. 

The care home manager didn’t agree. She advised me to leave everything in Dylan’s flat exactly as it was until the day he was due to leave.  Nobody should say anything to Dylan about the move.  It was important to keep things as normal as possible.  If I could collect him on the day he was due to move, she would ensure every single member of staff was on hand to pack up his flat. I didn’t need to organise a van. The handy man would help. Everyone would muck in to get everything moved on the day.  

As far as I was concerned, this was a hare-brained idea. Did she honestly believe the contents of Dylan’s flat could be packed up, transported and reassembled in a few hours.  The assumption that staff would be available at the other end to receive and re-assemble Dylan’s things exactly as they were was unreasonable. There wouldn’t be time to organise his DVDs and hang his pictures. And what if Dylan’s TV and internet connection weren’t up and running when he arrived? It was a recipe for disaster.

And that’s when the penny dropped. The manager knew that, however carefully the process was managed, it would be difficult for Dylan. He would be anxious, confused and unsettled.  There would likely be challenging behaviour. The manager’s concern – in suggesting that we didn’t tell Dylan or move his things until I’d taken him off the premises – was to minimise the impact on them. She didn’t want to be the one picking up the pieces from a situation her organisation had created. She’s protecting her staff, I thought.  Well, you could say that’s her job. Equally, you could say her job was to protect Dylan. 

In the end we agreed that I could remove some unwanted things and that a van would collect a few items in advance.  Dylan would be told the flat was going to be painted. Not a lie, but not the truth either.  But then something happened: I got bitten. I was hurt enough to be in hospital overnight and, three months later, have only recently been discharged from occupational therapy. Worse than the pain was the shock it had happened to me.  He must be very anxious, I told the care home manager, about the move.  O not at all, she replied. Staff haven’t said anything to Dylan about it.  He doesn’t know anything.

How could we not have seen?  Dylan’s language isn’t speech.  It’s body language and atmosphere, other people’s emotions and unspoken truths.  It’s the fact there was nothing in his calendar for July. They way we didn’t talk about that. And yes, it’s the way mummy threw his old t-shirts away and took his pictures down. He did know something about it.  He didn’t know exactly what, because we hadn’t tried to tell him.  But he was perfectly aware that something was going on. I took the hit for this.

Not Twice Shy

Not just once, as it turned out, but again as Dylan was moving in. Both times, I believe, were an expression of Dylan’s anxiety. The first time because he knew something was going on but not what. The second time, due to his confusion as to where he was and what was happening to him. 

The second bite was not as bad, but it re-opened the wound and delayed my recovery. The first time, I didn’t waver, but the second time I sat and cried in the staff office at Dylan’s new home. At that moment, I doubted I could carry on.  Little did I suspect this would turn to opportunity…

Explosions of Indigo Sky

Posted in A Parent's World by

Cataract

  1.  A condition in which the lens of the eye becomes cloudy. Symptoms include blurred, cloudy, or double vision; sensitivity to light; and difficulty seeing at night. Without treatment, cataracts can cause blindness.
  2. A waterfall, especially a large one over a precipice.

Two years ago, when my optician detected cataracts in my eyes, the first thing I thought of was how much Dylan would enjoy the joke that mummy had waterfalls in her eyes. Impossible without verbal language of course. And even if Dylan used speech to communicate, his autism (apparently) wouldn’t accommodate metaphorical language. I’m not so sure about that, actually.  I think Dylan enjoys a good metaphor. 

My second thought was that surely I was a bit young.  The optician agreed. Nonetheless, he said, you’re going to need them removing sooner rather than later. In the meantime, he suggested, I should wear photochromic spectacles to slow the deterioration. 

Since then, the very excellent Specsavers opticians have kept my cataracts under review. So has my daughter. Mum, just read that road sign for me, she demands periodically.  No. You’re wrong. I can’t believe you’re driving with your eyes. 

That’s what the optician said too when I went for my most recent review in May.   Can I have a new prescription, I asked.  I’m struggling a bit now.  No, you can’t, she said.  No prescription I could give you would help with your eyesight.  You are on the cusp of legal for driving.  Get those cataracts removed then come back to me.

Blind

But I can’t, I protested, when the ophthalmologist explained the procedure to me. I told her about Dylan. I couldn’t have the surgery because of the recovery period. I was still very actively involved in his care, I said. Especially at the moment. I explained about the situation with the care home eviction and my search for somewhere else for him to live. 

I’d been putting the operation off for the last two years, hoping that things would settle down for Dylan I said. But he was in a deeper crisis now than he’d ever been. I’m also in the middle of a complaint against his care organisation, I said. I need my eyes for that. I’m afraid you don’t have a choice, the eye doctor said, you will go blind if you don’t have the cataracts removed.  I will do the right eye first and then the left. Please book in at the reception desk.

Why don’t you put something in the diary for a few months ahead, the woman on the desk suggested.  I could give you the farthest away appointment. You can reschedule nearer the time if you need to. By then we’ll have released another batch of dates, and I can move you to one of them if your son’s care still isn’t sorted.  Best get you booked in though. The latest available dates are at the end of July. Shall I pencil you in for then?

Red

As things worked out, a place at Dylan’s new care provider became available at the beginning of July.  I’ll see how things go, I said to friends.  If he settles I’ll go ahead. Get the first eye done.

I’d decided to use Dylan’s move as an opportunity to step back a bit.  Not see so much of him. I’d maintained such an active role in his life partly to make up for what I perceived as deficits in care. Now Dylan had moved to a new setting, hopefully I wouldn’t have to take so much responsibility. 

I’m thinking of a short visit to Dylan every two weeks with him coming home for tea and a sleepover once a month, I said to Dylan’s team leader. Sounds good. Whatever you want to do we’ll support you with, she said. And I’ll stay out of the way for the first couple of weeks, I said.  Leave you to establish your own routines.

Although I knew this was a good idea, it was hard.  There weren’t many hours (minutes) when Dylan wasn’t on my mind during those first two weeks. I thought it would get easier as the days passed, but it became harder.  I haunted my inbox. Checked my phone repeatedly. Why hadn’t anybody been in touch?  The silence was killing me.

Why would you expect them to contact you, a friend asked. I explained that at his previous placement I’d received emails from the managers regularly. But what would they need to get in touch about, my friend asked.  Well incidents, I replied. It was inconceivable, I said, that there hadn’t been any incidents. They happened all the time at Dylan’s previous setting. 

My heart used to sink every time an email arrived. O what’s happened now. Please don’t let it be too awful. Please let him be alright. The same words over and over. Unfortunately.  I’m afraid.  I’m sorry. Just letting you know.  Incident. Incident. Incident.  The new setting was clearly just not telling me. I don’t know what’s worse I said to my friend, depressing emails or no emails at all.

Driving to see Dylan, at the end of the two weeks, I reflected that a break from such information had done me good but, on balance, it was probably better to know. Because, I thought to myself, I would find out in one great big cascade when I arrived. A bit like getting cataracts removed from an eye (which, as it happened, I was due to do the following day). 

I had another appointment before visiting Dylan. I swung my Skoda confidently into a corner bay in the jam-packed hospital car park, like a woman who has manoeuvred cars into tight spaces for nearly 50 years. Like someone who needs her eyes fixing, I told myself, as I felt the grind and crunch of my right wheel arch scraping against metal. 

Afterwards, at Dylan’s new place, I sat in the carpark with my head in my hands for nearly ten minutes.  I didn’t want to get out of the car. I couldn’t bear the thought of what I might find.  How much damage had been done? Not to my paintwork – I’d checked the deep gouge in the red at the hospital – but to Dylan and his staff? 

Purple and Blue

I could hardly believe it. I sat on the bed in front of my attic window, the morning after the operation, closing one eye then the other. I’d sensed something was different yesterday, but with the eye shield removed there was no mistaking it. The sky had turned purple. At least through my right eye.  It was really quite remarkable.  

I went downstairs to my study and turned on the computer.  The letters were black as beetles. I started laughing. All those weeks of trying to clean the screen. The constant adjustment of resolution and font. Browsing accessibility controls for a fix. All the time, it was my eyes that were the problem. 

I tested them again: left, right, left.  Definitely purple through the right eye.  I picked up the booklet from the eye clinic. In the Post-Surgery FAQS:  

You may notice or perceive colour differences between the treated and untreated eye.  This is quite normal.

I had a new normal.  I squinted at the world with one eye then the other, trying to catch it out. Through the old lens the world was muddy blue.  Glaucous. Slate. The colour of the past. The future, I decided, was definitely purple. The world had never looked so beautiful. 

Synaesthesia

As I adjusted to my new eye I amused myself by assigning things to the right or the left.  Some things were gloriously purple, others a dull blue. 

Sitting in the car park at Dylan’s new residential setting, feeling anxious about the surgery and frustrated about my car,  girding myself for the worst possible news: Steely Blue.

The support worker who met me on the staircase   – no, everything’s fine –  he’s getting into a routine – building relationships with staff – taking care of himself – what an independent young man he is –  I really admire that – no, there haven’t been any incidents – things are all good: Dazzling Amethyst.

Driving (unavoidably) past the entrance to Dylan’s old place one day: Grizzlies Blue.  I hadn’t realised just how miserable going there had made me, until I didn’t have to. I kept my right eye on the Lavender road ahead… 

to where Dylan, I’m told, has been canoeing and swimming, attended a birthday party and tried mediterranean pasta bake and a curry. He’s been for drives in his car, has exciting trips planned for later in the summer, and has free access to his food, films and possessions, all of which he’s organised beautifully. Through his high windows, explosions of Indigo Sky.

Handcuffs and Sweets

Posted in Environment and Community by

This is another long and retrospective post. I think I’m filling the gaps after not being able to write about the events of the last couple of years. There’s a 7-point summary of what I learned at the end of the post which you can skip to if you prefer. I’ll get back to present time soon hopefully 🙂

*

I wonder if I stayed silent about the incident because language brings a thing into existence. Normalises it. Is that why I resisted talking about it?

In my 2022 deputy report to the Office of the Public Guardian I referred to the incident when Dylan had left the care home and to the one when he’d been put in police handcuffs. As a result, I reported, I’d decided to look for somewhere else for Dylan to live. Significant decisions by a deputy have to be justified. Were these incidents grounds to claim the home where Dylan lived was no longer appropriate? 

When I heard the man from the Office of the Public Guardian (who had called to discuss my report) gasp, I knew that what had happened wasn’t acceptable. That the experience should not be normalised. Talking about something can also be an act of resistance.

Competing Accounts

Four months after the incident, I told the man from the OPG, I still hadn’t been given a clear account of what happened: no plausible explanation for how a man with learning disabilities who asked for a packet of sweets could end up in police handcuffs. 

I don’t know what else I can do I said. I’d taken advice from MENCAP and from a solicitor. I’d met with the Head of the Museum and attended reviews with staff from Dylan’s care home. I’d requested information from South Yorkshire Police and raised a Section 24 Safeguarding concern.  I’d made a formal complaint to the National Autistic Society and logged the issue with the Care Quality Commission. I was still waiting to hear the outcome of investigations. All I’d received so far were redacted documents and conflicting claims. 

The support staff said gift shop staff locked the doors to prevent Dylan from entering. They said that Dylan tripped one of them and tried to bite her. They said staff from the gift shop rang for security.  That six security guards pinned Dylan to the floor. The support staff said one of the security guards put pressure on Dylan’s chest. They told him to stop because Dylan could have a seizure. They said the museum telephoned the police.

The head of the museum said it was Dylan’s support workers who asked for the shop to be locked. Museum staff told her the support workers appeared unable to manage the situation and out of their depth. On the CCTV, support staff can be heard yelling at Dylan to calm down. A member of museum staff suggests they stop shouting because it seems to be distressing him. The head of the museum said they don’t employ security guards. Museum staff are not trained in restraint. A member of museum staff gave Dylan a cup of water. The head of the museum said it was a support worker who told reception to call the police. 

The accounts can’t both be true I say to the man from the OPG. How can I believe anything the care home tell me now? I needed to find somewhere else for Dylan to live.

Rating the Residential Setting

The Care Quality Commission gets a lot of criticism for its inspection regime, but what other mechanism is there for sifting through hundreds of providers? I would only look at settings rated satisfactory or above, I decided. 

Referrals have to come from the funder, I was told, when I telephoned the providers on my shortlist.  Parents can’t do this themselves.  I’m his Health and Welfare deputy, I said.  That didn’t make any difference. I asked Dylan’s care package manager if she would help. Dylan’s placement wasn’t being terminated, she said.  The home had admitted staff supporting Dylan had not been appropriately trained. Lessons had been learned.  They had agreed not to allocate agency staff to Dylan again. I was the only one still raising concerns. 

But in January, when the CQC published the outcome of their unannounced inspection of Dylan’s care home, they assessed the setting as not safe, effective or well-led. The care home required improvement, the inspectors said.  See I said to Dylan’s fund package manager, I’m not the only one with concerns. 

I was conflicted about the rating. Part of me felt vindicated, but I was also uncomfortable. The inspection regime is crude. Not fit for purpose, some say. It only measures what it looks for. Context is ignored. In the news, reports of a headteacher who committed suicide after her school received a similar verdict. Had my complaint triggered the inspection? What might I be responsible for? But a letter from the care home manager reassured me: the inspection outcome was due to staffing problems affecting the sector. Nothing to do with her. I’m sorry, I said to Dylan’s care package manager, but it’s not satisfactory.

Competing Options

Perhaps Dylan needs somewhere more like home, I suggested.  My experience of supporting him was completely different. I didn’t see any problem behaviour. I know home will always be separate and special, I said, but there’s too much distance between the residential setting and home at the moment. I just don’t think a residential environment is working for him.  It’s too routinised. Too restrictive. Dylan is too independent-minded. 

Why don’t you look at a supported living provider, his care package manager said. See what you think. In one sense it was counter intuitive.  Some people might say the incidents Dylan had been involved in suggested the need for more restrictions, not less. That’s certainly the approach his care home had taken since. What a leap of faith would be required to remove the restrictions instead – move Dylan into the community with more freedoms.

I visited a regular house with a regular garden on a regular housing estate and tried to imagine Dylan living there with two other men. Self-contained, but shared. Taking care of his space as if it were home.  Doing his shopping and cleaning and cooking. Spending time in the garden. Responsible for his own heating and bills. Could I imagine this? Honestly? If Dylan was to manage, I would have to be more involved not less. He could be more vulnerable. Staff too, if anything went wrong. Perhaps it was too much of a risk. Good for someone with capacity. Someone less complex than Dylan. With an extended family network. Maybe better to work with Dylan’s current setting to help him to be happier.

Chasm

So, a year after the museum incident – having reviewed the incomplete and unsatisfactory evidence and the uncertain alternatives –  I resolved to focus on making Dylan’s placement more successful. Staff seemed anxious. Could Dylan have a core team who enjoyed working with him? Dylan’s behaviours needed to be understood as communication. Could a Positive Behaviour Support specialist train and support staff? Dylan wasn’t getting out enough. Would a Motability car help? He needed more exercise. I’d get a rowing machine for indoors.  Buy a new sofa to make Dylan’s apartment more comfortable. And I’d put my house on the market and move nearer so I could be more involved. See Dylan on a daily basis. Try to reduce the chasm between the residential setting and home.

Perhaps it’s because of such resolve that being informed, eight months later, that Dylan was being evicted felt like free-falling into a chasm. The decision already made. No doubt secretly under review for some time. No discussion. No partnership. No reasons given. No respect. And – worst of all – a decision with significant consequences. 

Labelling the Resident

In the education sector, where I once worked, we used to talk to trainee teachers about labelling theory and how it operates.  I’d seen this in action for myself, while working in schools in the 1980s. Don’t listen to staffroom talk about pupils, I would tell my students. Go in fresh to every encounter and make your own mind up. You might be surprised. 

Still, I knew that labels tend to stick. When I went to school in the 1960s and 1970s we were streamed for everything, even in a state comprehensive school. There wasn’t any movement between streams once they were fixed. We all knew where everyone in the year group belonged.  In the 1980s, as a trainee teacher, I was given responsibility for a bottom set group. I’m sorry, the Head of English said, I’ve had to give you the sink class. I did everything I could that term to un-sink them, but that label seemed stuck to every word I heard or said. 

Years later, to demonstrate labelling theory to education students I would use a simulation role play called ‘Star Power’ in which the odds were stacked against the students randomly assigned to be triangles (the circles had a humdrum experience while the squares found themselves with privileges). It’s such a powerful game that students would go on referring to it throughout their undergraduate years.  ‘I just don’t want them to feel like triangles’, was a phrase I frequently heard.

I’d say that Dylan ended up a care sector triangle.  When his residential setting decided to evict him, they needed a justifying narrative. They could have admitted, in June 2022 after the incident at the museum, that they did not have the necessary expertise to support Dylan. They could have acknowledged this in January 2023 when the CQC reported that the setting required improvement and that it was not safe, effective or well-led.  They could have accepted it the following June when I asked for support to find an alternative. 

Had the care home acknowledged that they didn’t have the expertise (i.e. that the problem lay with them) the outcomes for Dylan might have been different. As it was, by the time they decided they no longer wanted to support Dylan, they had to shift the triangle from themselves to Dylan.  Problematise him, rather than their provision.  Give him a score (19). Labels (absconds, bites, challenging behaviour, police incidents). 

I remembered the children in my sink stream class when I read through the documents that Dylan’s care home had circulated to other prospective settings. The triangles. Less than a year ago I’d been on the brink of moving Dylan into a support living placement, believing the care home was the problem.  Now the narrative had shifted. Dylan was the problem. I wasn’t surprised when the settings who received the paperwork said no. They couldn’t even consider him.  That’s what labels do.  How many of us put up our hands for the sink class?

Leap of Faith

The one place that was prepared to consider Dylan was not one I was willing to contemplate. You must be joking, I said to Dylan’s care package manager (now in overdrive trying to identify an alternative placement for him). The organisation had a tarnished reputation. Their homes are not all the same, she insisted.  Don’t judge this setting against another.  Dylan’s care package manager had been impressed by the setting in recent visits. I might be surprised if I went to look for myself she said.  I remembered how I used to tell my students that they might be surprised if they made their own minds up about a pupil or school. I needed to walk the talk, I decided. 

I would also, I decided, need to make a leap of faith. All the questions, inspection reports and reputations in the world are sometimes not enough. Was I prepared to believe that Dylan wouldn’t be treated as a triangle. That behaviour would be recognised as functional. That staff had the experience and expertise to allow Dylan to be his best self: the funny, charming, resilient and forgiving man I know. That they might find ways of supporting him to access the community safely, and for the setting to feel as safe to him as home. 

After one of my visits, a member of staff emailed to ask whether she could get Dylan a Polar Express duvet set for his bed. Did I think Dylan would like that? Just Believe, I thought to myself as I typed my reply. Just as one residential placement can wound, I have to believe another one can heal. That, with appropriate support, Dylan will get over this. 

Seven things I learned:

  1. That reputations that develop around a care setting (good or bad) may not be an accurate reflection of practice.
  • That Care Quality Commission inspections may be crude and infrequent, but they are all that we have and probably better than nothing.
  • That complaints and investigations processes are not transparent and that outcomes are not always made available.
  • That public sector staff and organisations are under pressures which mean they might not always provide accurate accounts of events (particularly, perhaps, those involving vulnerable people).
  • That the care sector is in crisis in terms of recruitment, training and retention of staff.
  • That the challenges faced by the care sector may be mitigated by effective management but that vulnerable adults are more vulnerable in a poorly managed setting.
  • That parents don’t have any meaningful role in decisions affecting their disabled adult children (even if they are court-appointed deputies).

The Criminalisation of the Learning Disabled

Posted in Environment and Community by

Below (as promised in my previous post) is an extract from a memoir in progress. The focus of the book is my relationship with my father, rather than my experience of autism. As the book has progressed, however, I’ve realised that my relationship with my father was significantly influenced by my relationship with Dylan. This extract touches on that, while recounting an incident which took place a week after my father died.

As the chapter opens I am in a cafe with two friends, having just returned from a long-distance walk which I embarked on three days after my father died. I have arranged to visit my father’s body in the Chapel of Rest the following day. While I am in the cafe, I hear of an event involving Dylan.

As I have noted in previous posts, I have not felt able to write about this incident for a blog or essay. Were I to do so, I would frame it as ‘the criminalisation of the learning disabled’. In my memoir, the chapter has a more concrete title. The names of the living have been changed but Dylan is recognisable.

Chapter Five
Wrists

30th June 2022
Sheffield

I’m having lunch with Daisy and Blue at our favourite café in the Park Hill Flats. When the three of us shared an office, we’d slip across the tram tracks to escape here at the start and end of term. We’ve kept it up since Daisy and I retired. I ask Blue if she’s finished her marking yet. Never mind that, she replies.  Tell us about your walk. Did you and Jo share a room? I couldn’t do that, Daisy says. Are you still friends? Blue laughs. I tell them we got along fine. Jo was understanding about dad.  They murmur their sympathies. 

I’m concentrating on my broad bean and mint smash – fine dining after four days of Trek Bars –  so don’t register my phone ringing at first.  It’ll have stopped by the time I get to it, I say, as I rummage in my bag. The caller is persistent. Probably a dialler. But it’s my son’s care home. My stomach turns somersault. Only in an emergency. Hello? I say, cautiously. I can hear someone not speaking. Hello, more firmly. When a voice replies it is the care home manager. She starts to say something then sighs and starts again. She doesn’t seem able to form a sentence. It’s as if she’s holding back words, unable to speak an unspeakable thing.  Suddenly I’m scared. It must be something awful. No, she tells me. He’s alright.  He’s here. 

My relief is fleeting. I can sense the day is about to collapse. The way it did in March. An early evening drink with Jo before a film. That call. My body turned cold when I heard. Ariel had run down the care home drive and out across the fast and furious road, support workers in pursuit (not quick enough in their flippy flappy shoes). Wait, they had shouted, above the fear and noise. Just stay there. Ariel froze, stranded at the wrong side of the rush hour traffic home. Probably in shock, they said. The incident form recorded the highest category of concern: risk to life. What can be worse than that, I think, as I ask her to tell me, please just tell me. Daisy and Blue look up from their food, alarmed. I excuse myself and step outside. 

After her hesitant start, the care home manager is perfunctory. A new risk assessment will be done. Until then, Ariel won’t be able to access the community. He has a cut on his lip and marks on his wrists, is complaining of pain in his arms. They will keep an eye on him. Dazed by the ordinary afternoon I make my way back to Daisy and Blue. Her words are all I have. A single story. How else can I know?  I wasn’t there. I think of my speechless son. His bruised wrists. What would Ariel tell me if he could?  I shake my head as I slip into my seat. What’s wrong Liz, Blue asks. What’s happened? Something bad, I say. I don’t know what to do. 

There had been an incident during a trip to a museum. Ariel had tried to leave after being refused sweets. When support workers stopped him he’d threatened to bite. One of them ended up on the floor with Ariel on top of her. He wouldn’t trip someone, I say. He couldn’t plan and execute that. She’ll have fallen over him. Why was he there anyway, I say. Not appropriate. Too language based. Imagine being taken somewhere you can’t make sense of. Told you can’t have sweets. You can’t leave. Being physically restrained. If we grab at Ariel, should we be surprised if he grabs back? It’s flight or fight. How can a man with epilepsy and a learning disability, who asks for sweets, end up pinned to the floor by security guards?  Who called the police?  Blue and Daisy stare in silence, eye rings widening.

Daisy used to work in disability. It’s her field. Friggin’ hell, Liz, she says. She suggests things I should do. Not now, she tells me. Later. After the funeral. But you can’t let this go. She checks her watch. Are you two still up for the film, she asks. Or not. My instinct is to get Ariel, but I’m struggling to process things. It might help take your mind off it, Blue tells me, as we make our way across the tracks. I drift into The Showroom with them. Wings of Desire (The Director’s Cut). It doesn’t matter if I can’t pay attention, I tell myself, as the opening credits fade to sky. I’ve lost count of the times I’ve seen it. I wring my hands in the condoling dark, waiting for angels. It’s a comforting thought: winged creatures wandering the city, looking for troubled souls. If they exist, my guileless son can probably see them. For all I know he still keeps company with his Gran. How long, I wonder, before he glimpses dad?

Under the beam of xenon light, I think of his body in the chapel of rest, still as darkness. I imagine a slant of sky from a high window. Birdsong. The brush of a wing. I’m pulled back, abruptly, by the trapeze girl. My stomach falls. I clench my hands. Try to erase the thought of him. I still can’t decide whether to get Ariel or visit Dad. Always, these dilemmas. I can’t come dad, I’m sorry. I’m looking after Ariel. How many times have I said that? Now I won’t even be able to say goodbye. Just as I never got to see mum at the end. Who would prioritise the living over the dead? Only a fallen angel, in love with a trapeze girl.

                                                                        *

I say goodbye to Daisy and Blue and make my way home through the short shadows of June. I can’t shift the images from my head. Ariel hauled backwards by his bag. Ariel held down by six men. One at each limb, one on his chest, one at his head. Ariel being escorted from the museum in police handcuffs. I cut the corner at Decathlon and head towards the underpass. I’m on automatic, beating my regular route through the city. It should take me 50 minutes, but I’m off the pace today. It might be the hard jar of tarmac, after walking the yielding moors, but I suspect it’s my heart that drags, not my legs. I turn onto Ecclesall Road, slalom through gathering groups. Five o’clock. The bars are filling with beautiful people. They swivel on high stools, scrolling through phones, or stand in circles waving pint glasses and nachos. 

Some of the men are Ariel’s age. Grandsons my dad would be proud of.  He’s what we used to call an idiot dad told me once. You’re best off putting him in a home. Dad meant a mental institution, not a care home, but a workhouse would have suited him. Anywhere Ariel could be forgotten. Erased.  Over my dead body, I said. Shut up will you, dad. Don’t talk to me like that, he replied, jabbing his finger. I’ll tan your hide. You’re not too old you know. I was in my 30s. Older than these men with their arms round each other like brothers. Older than Henry, though you’d never know it. My younger brother was treated like a grown-up while I remained dad’s little girl. Infantilised, my daughter told me.

I had the instincts of a vixen, but it was tough, especially after Ariel left school. His day centre was only open 10-3. I resigned my management role and negotiated flexible hours, but the adjustment left me exhausted. Ariel was overwhelmed too. When he got home from the centre, he’d yank my ears hard as if to tear them off. I wound chiffon scarves around my head to protect them. You’re so stylish, a colleague told me. I smile ruefully at the memory. I might have dressed with panache, but at home, under the wraps, we were close to collapse. 

I’m nearing Hunter’s Bar where the millennial playgrounds give way to children’s parks. I’m not ready to go home yet. On a bench by the river Porter, I accept that things are probably worse for Ariel now. He pulled ears before, but he never tried to bite. He’s become more anxious and frustrated. I knew something was wrong. Running away in March. Now this. I need to find somewhere else for him to live. I know it’s the right thing to do, but my heart falls at the thought. It had been a battle to get Ariel’s current place seven years ago. It’s specialist provision, I’d told family and friends. The best I could find. What do I do now? 

I get up from the bench with a sigh. It’s scary to be responsible for someone else. Mum used to praise me for the way I cared for Ariel, but Dad only ever criticised. He wasn’t satisfied even when Ariel moved to residential care. Afterwards, when I turned up to visit with Ariel, dad would raise his eyebrows. You’d better come in, he’d say, turning his back. Then, over the Party Rings,  why don’t you find a home for him? I have dad, remember?  So why is he still here? You’ve done your bit. Let someone else look after him. I did dad, I whisper, as I turn for home. And look what happened.  Over your dead body.

*

Afterword:

Two years later, I am still shocked that a man with severe learning disabilities, who asked for a packet of sweets, ended up in police handcuffs. In my next post I’ll reflect on the aftermath of this incident and some things I’ve learned from it.

Somewhere Else

Posted in A Parent's World by

For complicated reasons I applied to change my name by Deed Poll in June 2023.  I’d carried my name proudly since birth but following certain revelations decided that I could no longer. The Royal Courts of Justice have a backlog of Deeds waiting to be processed currently. A five month wait, I was told, when I enquired about the progress of my application towards the end of last summer. 

From November last year I haunted my mail for a brown franked envelope. Nothing.  Patience is a virtue, I told myself.  In February of this year, my forms were returned to me.  I’d made an error.  If I corrected it promptly they promised to deal with my application by return.  I chided myself for having attempted the process without a solicitor and applied a second time.

Shortly after, Dylan’s placement was terminated by the National Autistic Society. I was so preoccupied with challenging the way they managed this, and finding somewhere else for Dylan to live, that there wasn’t time to think about my name.  But when I hadn’t received my Deed by June I started to worry.

It had been a year since my original application. I was in limbo, using my new name for everything except stuff to do with money, elections, driving, travel and telephones, for which proof of a name change was required. Perhaps you could just keep your old name, a friend suggested. Going back would be as difficult as going forward now, I replied.

Early Days

The week before Dylan was due to move to his new placement –  with all the paperwork done and a moment to think about something other than my son – I sent an exasperated email to the Court. Something about my tone must have jogged the system because my document arrived within the week. 

According to the Deed, my new name was ‘Enrolled in the Central Office of the High Courts of Judicature the 9th day of July in the year of Our Lord 2024’.  That’s the same day that Dylan moved into his new residential setting.  A fresh start for both of us then.

I say my new name with more confidence now that it’s official. My new signature is a bit wonky.  Needs practice.  But it’s early days.  I’ll ease into it.  Dylan’s early days have been a bit wonky too. It sounds as if he’s learning their rhythm, though. Easing himself into new routines.

Change is hard. We hold on to what we know, even if it makes us unhappy. That’s why people stay in wrong relationships and jobs for as long as they do. Dylan would no doubt prefer to be at his old place because it’s familiar. He’s probably feeling confused and anxious. But staying where he was wasn’t the answer. In the end, it wasn’t even an option.  When I remember this, wonky days are easier to embrace.

Something Else

Around the same time that I applied for my new name, I started writing a sort of ‘dramatic memoir’ . The book is based on  three long-distance walks I completed between June 2022 and June 2023, culminating in my decision to change my name. When I started the project I thought it meant I would be taking a break from writing about autism, but that hasn’t turned out to be the case. 

I have alluded a few times to an event involving Dylan which I found too difficult to talk or write about.  Reviewing the first part of my memoir recently I realised I had to try. The incident took place the day after I returned from the first of the three long-distance walks I recount in the book. It was important to the narrative, but I’d ducked it. I hadn’t been brave enough. I‘d have to fill in the gap, I told myself, when I read my draft back.  

To my surprise, I found the memoir format enabled me to write about something I hadn’t been able to previously. Creative non-fiction is an increasingly popular genre and maybe part of the reason is that it offers us a language for trauma. Perhaps it also offers us the potential for healing. I’ve decided to share my attempt to write about the event because it’s important that we hear the difficult stories. They are as much a part of our attitude to disability, and the way disabled people are cared for, as the celebrations. It’s not a blog piece, of course – It’s something else – so thank you for being my early reader 🙂