Dylan’s Car: Incarceration or Independence?

Something has happened since I  posted at new year. It’s pretty big.  When she heard, my friend Jo said: you don’t suppose this is about the car, do you?  Surely not, I replied. That would be vindictive. More about that later. First, a bit of backstory about the (seemingly) small issue of Dylan’s car.

Breakdown

In my last post I mentioned that Dylan and I took the train for our new year trip as I was nervous about using my car, which had failed to start twice. Although I sorted my Skoda out, it was a wake-up call. 

Some years ago, I realised the car I drive needs to be as reliable as possible so as to limit the chance of breaking down while transporting Dylan. Supporting Dylan at weekends typically involves 150 miles of driving and holidays significantly more. My local garage and mechanic have looked after us well, sourcing low mileage, ex-Motability cars, just out of warranty,  as soon as my milometer hits the 50k mark (which experience has taught me is when things start to go wrong). My Skoda’s recent protests happened right on cue, in the high 40,000s. 

This time, however, I’m in no position to replace it. While there are many benefits to being partially retired, money isn’t one of them. There’s no capacity in my current circumstances for trading in my car to meet Dylan’s needs. And changing the Skoda would be for Dylan not me: while I don’t relish the thought of breaking down, I’d run the risk if it was just me. This was a financial consideration I hadn’t considered when I gave up working full-time. What do other families of disabled adults do, I wondered?

Motability

And then of course I realised – the mobility component of a disabled person’s Personal Independence Payment (PIP) can be used for the hire cost of a Motability car. Not everyone who gets PIP qualifies for the mobility allowance, but Dylan has always received it. I’ve never previously applied for a Motability car as Dylan was either living at home (where two cars seemed pointless) or in a care setting with ‘pool cars’. Instead of spending Dylan’s benefit money on a Motability car, I used it to support his trips.

Now, however, the scheme appeared to offer an elegant solution. Dylan could keep a Motability car at the care home, and I would only need to use my car to drive there and back, leaving my car at the care home while Dylan and I used the Motability car. That would ensure Dylan was transported safely and reduce the wear and tear on my Skoda. 

Getting a Motability car would also be a happy solution to a problem I’d only recently identified. Last October, when I asked the care home manager why Dylan seemed to be getting only limited exercise during the week, I was told there were times when a pool car wasn’t available. As there were only a limited number of cars to share between residents, if Dylan missed his scheduled slot, his outing had to be cancelled. So, two problems solved.

Nissan Joke

When I entered my search criteria on the Motability site it suggested a Nissan Juke. This made me smile. I’d had to hire cars for trips with Dylan for a while the last time I changed my car. I’d cursed the Juke I drove one weekend for its blind spot. Nissan Joke, I called it. 

The algorithms were having a laugh. It was probably because I’d selected CD player, I decided. Old technology, my car salesman told me when I asked why my new Skoda didn’t have one. But old technology is essential for Dylan who needs to choose CDs and DVDs by the picture on the box.  Streaming doesn’t work for him. The jewel case is part of the pleasure. Dylan opens it slowly and carefully, pausing to admire the glint of the disc.

I curse the lack of a CD player in my current car regularly.  I’ve bought an Oakbrook AUX plug-in, but it eats batteries and (contrary to promises) jumps constantly. And I can’t adjust it while I’m driving: no skipping the tracks that hurt Dylan’s ears or changing a CD without stopping.  I’m sorry, Dylan, I say repeatedly. Rubbish isn’t it. I promise that next time mummy will get a car with a CD player. But would I really choose a Nissan Joke for a CD player?

Test Drive

Only in the old models, Peter says, when I ask where the CD player is. 8^th January. I’m sitting in a blue Nissan Juke on the forecourt of Bristol Street Motors, scanning the controls.  I get in the back, try to assess whether Dylan would be safe. I climb back in the driver’s seat. That’s not very good, I say.  No CD player is probably a deal breaker. You won’t find any new car with one, Peter tells me.  Old technology. May as well drive it, I say. As I’m here.

I can’t have been the only person who was troubled by that blind spot.  The car has a ‘blind spot warning system’ which pings when someone drives into it.  I don’t know what’s worse, I say to Peter, as I accelerate up one of Sheffield’s wicked hills: the pinging or the blind spot.  You can disable it if it annoys you, he reassures me. 

Could I have one with a handbrake, I ask, when we’re back at the showroom. I need the controls to be as simple as possible. Some of the care workers are young. They won’t have driven anything like this. I don’t want them to be thinking about the car. They need to stay focused on my son.  Sure, Peter says. We can request adaptations. Anything you want. Except for a CD player. It’s disappointing, I say. But I guess it’s  OK. I just need to check with the care home.  I’ll ring to confirm. I’m sure it will be fine.

Seven Seats

But when I checked with the manager, there was a problem. It would need to be a 7-seater vehicle. Next time I collected Dylan, I might want to have a look at one in the car park that belongs to another resident. Something like that would be good please. I didn’t understand. Why, I asked. Dylan requires an empty row to be left between him and the driver, she explained.  We usually transport him in the back of a people carrier. 

I was aghast. This was a conversation with too many starting points. In no particular order, I didn’t want to be driving a people carrier on single track roads in Wales or parking one on my busy city street. And I certainly didn’t want to have to fill one up with petrol from Dylan’s much reduced weekly benefit.  Dylan was only ever transported with one or two other adults –  how could a 7-seater car be justified? Had the manager not heard of climate change? 

Besides (and actually this is the starting point) it just wasn’t right.  Dylan loves driving. With hardly any multi-syllable words, Dylan pronouncing ‘gearstick’ with a flourish (laughing) is one of my miracles. Cars are for feeling safe and for the gift of language.  This is where Dylan initiates conversation, shouting ‘cows’ or ‘sheep’ at passing fields; telling me ‘at way’ (pointing with his arm) is ‘boom’ (Kelham Island Museum); ‘at way’ is ‘F’man Sam’ (the Emergency Services Museum); and ’at way’ is ‘Log’ (where he went for respite as a child). He verbalises (as best he can) swimming pool, MacDonalds, tram, water, and cafe. He reminds me, as we pass Record Collector, that we don’t have ‘Heap’ (Speak for Yourself). But Oxfam has ‘books’ and ‘DDs’. This is car-based communication through which Dylan shares his world. It is declarative and imperative. This is as good as conversation with Dylan gets. 

Let me get this right, I say.  You’re telling me that Dylan is usually transported in the back of a people carrier, separated from his support workers? Always, the manager confirms. At least a row of seats between. It’s in his risk assessment, she explains, due to some incidents. 

Incarceration

When I asked for the evidence, it appeared there had been 13 ‘incidents’ in the nine years that Dylan had lived at the setting. I don’t mean to trivialise the data.  You can’t afford to take a single risk with transportation I know. Except that when I looked at the incidents, they weren’t about the car.  The car was the site of protest at the end of an unsatisfactory trip. They were protests about an activity coming to an end before Dylan was ready. An unexpected transition.  A takeaway meal he was disappointed with. Perhaps (I speculated) music on the radio that distressed him, a misunderstood attempt at communication or (it occurred to me with a feeling of sadness) him simply feeling isolated and alone.

They’re using it as a prison van, mum, my daughter observed. It’s about containment. Transporting Dylan as if he’s dangerous. Stick him in the back. Shut the door. They need the people carrier to lock Dylan down when he protests. He’s not compliant enough for them. You should be proud of him, mum.

Next day, I emailed the manager that I wouldn’t be getting a people carrier. Dylan didn’t need one. I would order a Nissan Juke – significantly chunkier than my Skoda and hopefully a good compromise.  She replied that Dylan wouldn’t be able to use it while he was with them. Staff would not feel comfortable driving it. Could she be serious, I asked Jo, who has experience of the sector.  Probably, she replied. Everything is driven by risk assessment.  This is one argument you’re probably not going to win.  

Independence

I decided to go ahead. I would have preferred to act in partnership with the care home, but couldn’t find common ground with this one. It was a shame the car would stand idle during the week, but I’d probably be driving it more than them, based on Dylan’s short trips out during the week. If the car didn’t get used enough, it could go back at the end of the hire agreement. Or when I could afford to replace my Skoda.  So for the first time since Dylan moved to residential care, I acted independently. Good for you, mum, my daughter said.  Ironically, I replied, it’s Dylan’s independence it was supposed to promote, not mine. 

Breakdown

Two weeks after the manager tried to persuade me to get a people carrier, the National Autistic Society held a meeting at which it was agreed to terminate Dylan’s placement, with three-month’s notice. I didn’t know about the meeting, and I wasn’t told about the eviction until two weeks after the decision had been made.

‘You don’t suppose this is about the car, do you?’ Jo asked when I told her. We couldn’t imagine why the manager would have tried to influence the choice of car if she was about to terminate Dylan’s placement. But neither did we think the car was what this was about. Surely not. That would be vindictive.

Blue Lining

I took delivery of Dylan’s Juke a couple of weeks ago, a bright blue moment in the midst of a stressful time (though not for Dylan, who isn’t aware of any of this). Nissan hadn’t fitted a mechanical handbrake as requested.  Don’t worry, I told Peter. It will be fine. The situation is a little different to when I ordered it. I don’t suppose by some miracle it has a CD player, I asked. Peter laughed.  Only joking, I said. I’ve bought a CD player that runs off the car battery. Dylan should be able to operate it from the back. It will give him some independence. He’s going to love that.  

While we haven’t yet reached the silver lining of eviction (more about that in later posts) we have a sparkly blue lining. Dylan seems comfortable in his new car and to enjoy being in charge of the music. He’s developed an unexpected interest in the Sat Nav and – also against expectation – a couple of staff have taken Dylan for a spin in his new car:  ‘he sat lovely throughout the journey’, one of them told me. ‘I actually liked him sat closer, its easier for us to have a natter.’

iPad Sabotage: Dylan Loses His Music

In my last post, Selfie Sabotage, I reported that Dylan seemed anxious about people taking photographs by camera or mobile phone. This is now written into Dylan’s care plan so he is no longer exposed to photography at the care home or while he is with me.  Although this has involved a change in practice, I have found it surprisingly easy to put my phone away while I’m with Dylan. Last week I took Dylan to Marske-by-the-Sea for his summer holiday. As well as spending time on the beach we visited places I would previously have photographed but which I didn’t even consider getting my camera out for. It’s reassuring to me that habits can be quickly and painlessly changed when necessary.

My impression is that the ban on photographs has made Dylan more comfortable and I’m pleased I spotted that this was an issue for him.  Something that struck me last week, however, is that anxiety about photographs could, in time, be replaced by something else. Because I wasn’t able to take photographs, I made written notes about our trips and the places we visited instead.  By the end of the week Dylan was shouting ‘pen, pen’ at me every time I got my notebook out. 

Turkle and Technology

I was minded of Dylan’s phone-phobia recently while reading a Jonathan Franzen essay on Sherry Turkle (a ‘technology skeptic who was once a believer’). Children, Turkle writes,  ‘can’t get their parents’ attention away from their phones’. The decline in interaction within a family, Turkle suggests, inflicts social, emotional and psychological damage on children, specifically ‘the development of trust and self-esteem’ and ‘the capacity for empathy, friendship and intimacy’.  Parents need to ‘step up to their responsibilities as mentors’, Turkle argues, and practice the patient art of conversation with their children rather than demonstrating parental love (as Franzen puts it) ‘by snapping lots of pictures and posting them on Facebook’.

Turkle’s points about the impact of technology on child development could perhaps also apply to Dylan. If patience is a necessary quality when engaging a child in conversation, this is even more the case when communicating with someone who is non-verbal. Although Dylan is an adult in terms of chronological age, cognitively he is around five years of age (according to best attempts to assess this). Certainly, I would identify the development of empathy, trust and self-esteem as relevant to his nurturing and care. 

If there is any chance at all that exposing Dylan to technology could be limiting his opportunities for development then of course I should follow Turkle’s advice.  But perhaps Dylan intuitively knows this?  His protests about my phone were maybe because he wants my undivided attention – in which case, having to wait while I write in my notebook might be just as irritating to him as waiting for me to take a photo. Reading Franzen’s essay brought to mind another technology-related issue that I’ve had to deal with in relation to Dylan’s care recently. Rather than Dylan being the one protesting about the technology (as with phones and cameras) however, in this instance I have been the one doing the sabotaging.

Dylan’s iPad

Dylan has been using an iPad for years, primarily to access CDs and films he has purchased and downloaded and which he can watch offline. Previously, Dylan had portable DVD and CD players for this purpose but the iPad proved a better option practically and for promoting independence. Although initially intended for use during journeys and holidays, Dylan became increasingly attached to his iPad and built it into his daily routine, often preferring it to his TV or over other activities.

Recently, however, a problem emerged. On a number of occasions, Dylan managed to ‘lose’ the music he had purchased. This happened every three months or so, always while Dylan was at his care home.  Staff didn’t notice Dylan’s music had disappeared but they did report ‘challenging incidents’ for which there was ‘no apparent trigger’. Dylan would, however, show me that his music was missing when he came on a home visit and I would then have to set about fixing the problem. This was more complicated than Dylan merely ‘hiding’ the purchases (for which there are retrieval instructions) and required Apple technicians recovering the music so that it could be re-downloaded to Dylan’s iPad. The technicians were always professional, efficient and impressively competent but the process was time-consuming and frustrating. 

After the third fix, I asked if care home staff could provide more support to Dylan while he was using his iPad and suggested that they check it regularly, particularly if Dylan seemed frustrated or upset. When Dylan presented me with the problem again, just a week later, I decided a different solution was required.  Fair enough to fix something once or twice, but Dylan’s iPad seemed to have become a source of stress rather than a resource. How had this problem developed and why was it happening more regularly? I checked the stats to see how long Dylan had been spending on his iPad. Quietly aghast, I opened my secret drawer – the one where Dylan doesn’t know to look – and slipped the iPad inside. 

Intellectual Disability and Technology

It is very hard to remove something from an adult, even when they lack the capacity to make decisions and need someone to act in their best interests. Dylan had been using an iPad for years and it had a key role in his life. I was aware that in removing it I could create more problems than I solved. The iPad, however, was itself the source of some of the difficulties which Dylan was encountering.

Tech companies do not have intellectually disabled adults at the forefront of their mind during research and design and, as consequence, even the most intuitive apps and products are not always accessible, particularly to those adults who do not use speech to communicate (i.e. who are not literate and who cannot process spoken language). Although there are some great pre-school and pre-linguistic resources on the market, Intellectually disabled adults are not pre-linguistic children, they are adults who do not (and probably are not going to develop) spoken and/or written language. 

Like the school curriculum, technology is language-based and thus inaccessible to people who do not use language to communicate. It is sometimes possible to adjust a setting on a device so that it uses visual information. For example, Dylan is perfectly able to choose between the album covers of his music downloads. Apple’s default setting, however, is to display his music alphabetically, by artist/CD name. Dylan cannot read the text so he has no idea where to click. If his iPad defaulted to the text-based rather than visual setting (which it did, with every upgrade) Dylan would become disoriented and distressed. 

This has always been an issue for Dylan, but the problem seems to have become more acute since January when Apple rolled out a major upgrade to their music streaming service. Of course, what Apple want is for people to use their Music streaming service rather than purchase albums as Dylan does.  However, Dylan is not able to use the streaming service because it is language-based.  He needs his pre-purchased music, visually displayed. When it isn’t available to him in accessible format, Dylan tends to press keys and click icons and hit whatever message (language-based, which he can’t read) appears on the screen. I assume that it is at these times that Dylan manages to alter his settings and services.

The Apple Scruffs (my affectionate name for the wonderful telephone support guys) are happy to support me to recover Dylan’s music as often as he needs, but clearly it would be better if he wasn’t able to lose it in the first place.  One of the Scruffs advised that I send some feedback to Apple, suggesting that they put an option for preventing the removal of downloaded music on Parental Controls. I never had a response to that request  – presumably it isn’t a priority as Apple want to encourage the use of their subscription streaming service rather than downloaded purchases. So, as things stand, Dylan has hundreds of pounds worth of films and music which he has bought via iTunes, but which he cannot use. These will, of course, remain his personal purchases and at some time in the future, hopefully, he will be re-united with his iPad and able to enjoy these again. At least, that’s what I’m telling myself …

Support and Technology 

What the recent problem with the iPad has demonstrated is that, given the built-in obstacles in the technology, Dylan requires support to use it. Dylan generally recognises when he needs support with something language-based and will request this.  However, the personal usage data suggests that Dylan had been spending significant amounts of time on his iPad. The reality is that if staff are not available (or able) to support Dylan with the technology, rather than a resource it becomes a source of frustration and anger, leading both the technology and Dylan to breakdown.

When I confiscated Dylan’s iPad I was aware this would be difficult for him. I told Dylan the iPad was ‘broken’ (which Dylan knew because he had shown me that the music had disappeared). This time, I told him, it had to ‘go to the shop’ to be fixed, but for how long would he accept that story? Confiscating the iPad would also be challenging for support staff. Not only would they have to field Dylan’s questions and manage any incidents arising from my removal of the iPad, they would need to find something else to occupy Dylan’s time. Turkle might approve of what I had done, but I wasn’t sure the care staff would.

I held my breath as I explained to the team leader that I was returning Dylan to the home without his iPad. To my surprise, she reacted positively; she’d had a hunch, she said, that many of the ‘incidents’ involving Dylan were caused by his frustration with his iPad. Perhaps removing it would reduce Dylan’s stress and mean there were fewer incidents of ‘challenging behaviour’? 

Dylan and Technology

At the time of writing (11 weeks after I confiscated the iPad) there is some evidence to suggest that the iPad had become a source of distress for Dylan rather than a support; certainly there has been a reduction in the total number of incidents when Dylan has become upset at the care home. I’ve been most struck, however, by the ease with which Dylan has accepted the change. Just as I quickly got used to life without my camera phone, so Dylan has adapted to life without his iPad. He asked about it a few times in the early days but hasn’t mentioned it (at least to me) for weeks. 

Going on holiday last week presented me with a dilemma, however.  Dylan would need access to his music and films while we were away. Should I produce his iPad (music restored)?  If I did, Dylan would expect to keep it on our return from holiday and the cycle would begin again: staff not available to supervise –  Dylan spending too much time on his iPad –  music lost –  Dylan frustrated – challenging behaviour –  me back on the phone to the Apple scruffs. Nothing about that felt positive. So instead, I bought a portable DVD/CD player for Dylan to take on holiday with a selection of discs.  Old technology it may be, but it worked a treat.

In terms of new technology, the dream for the future is that tech companies give more thought to designing (or adapting) products so that they are accessible to adults who are non-verbal with intellectual disability. Perhaps that’s a pipe dream. In the meantime, it surely isn’t too much to ask that all disabled adults in care receive the support they need to access technology safely and effectively?

Notes:

The photos of Sherry Turkle and the iphone are free stock images. The other photos are of Dylan’s iPad and were taken by me. The final photo is the view from a window of our holiday cottage in Marske-by-the-Sea, taken opportunistically one morning while Dylan was still sleeping.

Johnathan Franzen, ‘Capitalism in Hyperdrive (on Sherry Turkle)’, pp 67-74, in The End of the End of the Earth:  Essays (Farrar, Straus and Giroux, 2018)

Mothers

In the news recently, a claim that ‘missing microbes cause childhood cancer’. New research, apparently, suggests that a child’s immune system can become cancerous if it is not exposed to enough bugs early in life:

https://www.bbc.co.uk/news/health-44199844

Although we are reassured that ‘This study is absolutely not about blaming parents for being too hygienic’,  imagine the impact if you are the mother of a child with cancer? As well as dealing with the distress of witnessing your child’s illness, you are offered the possibility that your own care-giving practice might have been responsible. ‘Another way to knock mothers’  I thought to myself when I read the report. I’ve about had my bellyful recently…

Mother blame

Last semester I was asked to take a seminar group for a module which focuses on psychological perspectives on educational processes. I don’t usually teach on the module and I found the opportunity interesting and often valuable. One thing I was struck by, however, was how often mothers are blamed for poor educational outcomes.

I was already aware of the link between early literacy and maternal education, a relationship which tends to act as an indicator of socio-economic class.  Last semester, however, I encountered research which linked  child outcomes to psychological factors such as maternal self-efficacy, maternal self-esteem and maternal resilience. While these may also be associated with social class, I found it interesting that there was no mention of paternal well-being; rather than associate poor outcomes with the broader context of home, they were laid firmly at the feet of the mother.

As well as linking mothers to outcomes in relation to child development and achievement, research studies have suggested a relationship between mothering and a child’s experience of school. Studies of bullying, for example, have suggested that ‘maternal hostility’, ‘maternal mental health’, ‘maternal demand’ and early motherhood all positively correlate with a child ‘having a participant role in bullying behaviour’.

A framework of ‘cumulative risk’ identifies ten key factors which affect educational outcomes, four of which focus explicitly on mothers: mother-child interaction during infancy; maternal mental illness; maternal education; and maternal anxiety (the other factors involve  structural risks, such as family size and minority ethnic group, and circumstance, such as life events and family support). Mothers have also been blamed for not doing enough to assuage educational disadvantage;  not only do they comprise 40% of the cumulative risk to children, mothers are the key  to protection as ‘maternal resilience’ is identified as most likely to offset risk.

Had I been resilient when my children were young, I asked myself?  Was I emotionally available through those difficult post-diagnosis years?  Did I control my anxiety about the future? Make appropriate demands on my children?  Had I kept my spirits up and sense of identity intact? I couldn’t, in all honesty, answer Yes to any of these questions…

Bettelheim and beyond

Most mothers with a child who has been diagnosed autistic hear about Bruno Bettelheim’s ‘refrigerator mothers’ at some point. Even though we are assured his work is now discredited, for the mother of a newly-diagnosed child it is very difficult to encounter Bettelheim’s claims. I certainly experienced them as cruel following Dylan’s diagnosis: I was doing everything I could to support my child, yet here I was being framed as the problem.

You’d think this was a thing of the past. In recent years, however, a new form of mother blame is gaining currency. Mothers (for it is typically mothers, not fathers) are framed as ‘infantilising’ their autistic children by over-protecting them and failing to recognise them as autonomous individuals. This is a discourse which has emerged in tandem with a commitment to developing independence, an agenda freighted by the voices of self-advocating autistic adults.

Two assumptions seem to be at work here. The first is that a non-autistic mother of an autistic child will necessarily privilege the neurotypical and try to ‘fix her child up’ and/or be over-protective and infantilise her child.  Allied to this is the suggestion that mothers who are not diagnosed as autistic themselves have no right to speak for their autistic children due to their lack of understanding of autism.  A recent blog by Paula Sanchez refers to the “warring factions of ‘autism moms’ and autistic activists”. In the article, Sanchez caricatures a neurotypical  ‘autism mom’ and an ‘autistic mother’:

https://autisticmotherland.com/2018/04/20/from-autism-mom-to-autistic-mother/

Sanchez  urges  ‘autism moms’ to ‘prioritise your child’s autonomy over and above everything else’  and to encourage their autistic identity as part of the process of self-advocacy.  While of the view that non-autistics can probably never understand being autistic, however, Sanchez acknowledges: “it wasn’t working out I’m autistic that influenced my parenting. It was much more that as I became more confident as a parent I became more able to do what my son needed. I no longer felt like I had to perform some idealised version of the ‘good mother’.”

Who speaks?

As the mother of a non-verbal autistic man I find it useful and often illuminating to hear the testimony of autistic adults who self-advocate.  Their voices give me new ways of thinking about Dylan and how he might experience the world. The demand by autistic self-advocates for ‘nothing about us that isn’t by us’, however, challenges parents (such as myself) who advocate for and on behalf of a son or daughter.

Once again I find myself struck by the complexity of the intersection of intellectual disability with autism. As someone who lacks mental capacity, my son is not able to take part in the conversation; not only does he not have a ‘voice’, he is unable to make informed decisions about his life.  As I have argued elsewhere, concepts such as ‘independence’ and ‘autonomy’  take on a different shape when viewed through the lens of intellectual disability.

So who should identify Dylan’s best interests? Who speaks for Dylan and other autistic adults with intellectual disability? Sanchez acknowledges, in the post referred to above, that: “My autism does not give me some special power to intuitively know how to parent and support other people’s autistic children.” The fact I don’t have an autism diagnosis might prevent me from understanding some aspects of Dylan’s experience,  but the deep and enduring relationship I have with him as a mother must surely have heft? And, as I have argued elsewhere, the alternative to advocacy for those with intellectual disability is not self-advocacy, it is silence.

Liminal mothers

Some academics (mothers of disabled children themselves) have questioned the assumptions which have been made about the role of parents in a disabled child’s life. Ferguson (2001) argues that parents carry their child’s impairment as part of their own lived experience and are therefore well placed to advocate for their disabled children and bring about positive change in their lives. Similarly Kelly (2005) observes that parents ‘act as experiencers, interpreters and agents’ through their intimate connection to the experience of their disabled child. Parents’ embodied experience of care-giving is not ‘second-hand knowledge’ of disability, Kelly argues, but rather a ‘partial knowledge’  which allows parents to share some of their child’s experience and meaning-making.

Ryan and Runswick-Cole (2008) have described the position of mothers of disabled children as ‘liminal’, rather than partial. They argue that mothers who are not themselves disabled must operate in a landscape of ‘oppressive mothering ideologies and disabling environments’.  Because of their distance from mothers of non-disabled children, as well as their tenuous position within the disabled community, non-disabled mothers of disabled children occupy a liminal space. Ryan and Runswick-Cole refer to the resulting ‘difficult and contentious debates about the role of non-disabled people within the lives of disabled people’ and the way in which ‘the actions of mothers have been interpreted as constraints within their children’s lives’.

It is interesting that the two concerns highlighted by Ryan and Runswick-Cole  – advocacy and autonomy – are the same as the issues identified in this post, written ten years later. It seems the current wave of mother blame may have been a long time gathering. In their 2008 paper Ryan and Runswick-Cole suggest that one of the reasons mothers might seek diagnostic labels for their children is in order to shift the discourse from ‘mother-blame’ to ‘brain-blame’.  While this may have been the case ten years ago, particularly in relation to autistic spectrum conditions, there has been a significant shift in the discourse to a celebration of neurodiversity and the claiming of autistic neurology as a vital part of self-identity. Against this backdrop, perhaps, there is a tendency to reposition blame (for a perceived lack of independence and the appropriation of voice) with the mother.

Liminal sons and daughters

Although I am uncomfortable with the way in which it is the mother, rather than father, who is subject to surveillance and criticism in relation to the ability to parent a disabled child, I am not averse to critical feedback and scrutiny. I often wish it were kinder, more supportive and more sympathetic. I would also prefer those without experience of parenting (even if they are themselves autistic) to acknowledge their own partial knowledge. Sanchez, in the post referred to above, makes some helpful observations and suggestions for building bridges between the ‘warring factions’ of autism parents and autistic adults.

What is still absent from these conversations, however, is any acknowledgement of autistic adults with intellectual disability. If the position of mothers of disabled children is liminal, then the space occupied by adults with intellectual disability is a similar limbo. As I argue above, the position of autistic adults who lack mental capacity is often unrepresented and overlooked. In challenging the ability of parents to advocate for their disabled sons and daughters, I would argue, we are putting the welfare of adults with intellectual disability at risk.

There is a legal system in the UK for the protection of the financial and welfare interests of those who lack capacity. It is a little-used system and one which is not easily accessed or much discussed.  In the last year, increasingly frustrated by the position of parents in relation to an adult child with an intellectual disability, it has become clear that it is a system I need to engage with.  So, once I’ve finished work and the football is over, my plan is to start the process of applying to the Court of Protection to be Dylan’s Deputy.  More about this in a future post…

Note:

The claims in the section of the post entitled ‘Mother Blame’ are from chapters 8, 9 and 11 of Woolfson (reference below). The images are sourced from the internet and to the best of my knowledge are copyright free. I’ve been unable to identify an artist for the image of the ‘floating woman’ but it was used as part of a lecture series on liminal space by Dr KD Farris. The image of the floating man is ‘Liminal Space’ by Nicholas Scarpinato.

Sources:

Barrett, E. (2017). Tied to the Worldly Work of Writing:  parent as ethnographer. Journal of intellectual Disabilities.  https://doi.org/10.1177/1744629517741008

Ferguson, P.M. (2001). Mapping the Family: Disability studies and the exploration of parental response to disability. In G.L. Albrecht, K.D. Seelman & M. Bury (Eds.), Handbook of Disability Studies (pp. 373-395). Thousand Oaks, CA: Sage.

Kelly, S.E. (2005). ‘A Different Light’:  Examining Impairment through Parent Narratives of Childhood Disability. Journal of Contemporary Ethnography, 34, (2) 180-205.

Ryan, S & Runswick-Cole, K (2008). Repositioning mothers:  mothers, disabled children and disability studies. Disability & Society, 23 (3) 199-210

Woolfson, L.M. (2011).  Educational Psychology:  The impact of psychological research on education. Harlow:  Pearson

 

A Room Of My Own

I’ve hesitated to blog about Dylan since my last post, in the spring, because he has been more unsettled and I’ve not been sure what sense to make of it.  Having reflected over the summer, however, I have some tentative observations to share…

Happy Days

While Dylan may have been more unsettled generally, he has continued to enjoy his short breaks and holidays. It is at these times that Dylan is at his calmest and most relaxed (as I suppose is the case for most of us). Since I last blogged about Dylan we have spent time at Spurn Point, where we joined our friends the Corbetts for a Safari, on Anglesey and in Northumberland.

In Northumberland, Dylan particularly enjoyed Alnwick Gardens, with their stunning fountains and cascades, and the gloriously empty Northumbrian beaches and coast path. We had some spectacular walks and a fabulous boat trip around Coquet Island, near to where we were staying. Dylan was calm throughout and happy to accept direction even at times which could have been flashpoints; in Barter Books, for example, he had to be persuaded to reduce his selection of 35 books (!) making what for Dylan were some very difficult choices 🙂  I was impressed by the way Dylan accepted this and moved on from his disappointment. A few years ago, I told myself, there would have been trouble.

Anxious Nights

I very nearly didn’t take Dylan to Northumberland, however.  I had made the booking in the new year, involving Dylan in the selection of the cottage.  Our annual summer holiday is very important to Dylan and (after Christmas) the highlight of his year.  Apart from  the year prior to moving into residential care, when Dylan’s behaviour had been very challenging and I was advised not to take him, Dylan and I have enjoyed a holiday together every year.  So it was with some concern, on the run up to this year’s trip, that I watched as Dylan grew increasingly unsettled.

The incidents being reported by Dylan’s home were not only becoming more regular but more severe.  There are a variety of behaviours but one that has been troubling to witness is the way Dylan breaks the things he loves most at these times.  This is something Dylan does (we think) as a way of managing his emotions. In a sense  it is a positive development in that Dylan now focuses his frustration on objects rather than on people . However, as Dylan typically destroys favourite DVDs and books, the incidents leave him distressed afterwards.

I have spent months re-buying possessions which Dylan has broken, only to see him break them again when he is upset. Recently I have tried not re-buying broken DVDs (Dylan can still access films via his ipad) but this has meant the focus of Dylan’s behaviour switches to other things. I’m not sure this is any better: replacing pyjamas has proved considerably more expensive than re-buying Disney DVDs and far more challenging in terms of maintaining standards of personal care.

It is very difficult to know how to respond to this situation. Clearly these behaviours are functional and Dylan is using them to cope with an anxiety and frustration which we have not yet been able to understand. Various attempts have been made to identify the trigger for these incidents (which almost always happen in the evenings) but so far we haven’t been able to figure out the cause. We have adjusted bedding (is Dylan overheating?); checked that staff are following Dylan’s bedtime routine (is he going twice through his schedule as he likes to?); monitored which DVDs Dylan was watching before an incident (is he getting over-stimulated?); looked ahead at planned activities (is there something scheduled for the next day which is making Dylan anxious?); and checked to see which staff were supporting Dylan (he has his likes and dislikes). None of these have provided a clear answer.

Favourite Things

A couple of nights before we were due to go on holiday there was a major incident. On this occasion Dylan was distressed for a significant period of time and destroyed a number of his things. There had been an incident earlier in the week and I had ordered replacements but they hadn’t yet arrived (this was before I had decided to stop re-buying DVDs).  Dylan must have been frustrated by not being able to work his emotions out on his favourite DVDs so switched his attention to an alternative which, on this particular night, was his Filofax.

Now Dylan loved his Filofax and carried it everywhere – that he would destroy something so precious was shocking. Apart from the physical  effort of tearing through leather and steel I found the emotional significance of what he had done overwhelming. Not realising that Dylan had destroyed his Filofax because he didn’t have access to the DVDs he would normally turn to at these times, and not understanding what was triggering the behaviours, I felt lost without a map.

As Dylan’s weekends at home had continued to be incident-free  I hadn’t been overly anxious about taking him on holiday in the summer but now I doubted my ability to cope. What if Dylan had a major incident while we were away? Would I be able to keep him safe and prevent damage to people and property? Providing I understand the source of Dylan’s anxiety I can respond confidently, but the unpredictability of the situation made me anxious.  It was, I decided, too risky. I telephoned the care home: ‘I don’t think I can take Dylan on holiday’, I said. I collected Dylan from his care home later that day; I would spend some time with him overnight then go away by myself the next day.

The problem next day, however, was that I struggled to pack my bag. How could I go without Dylan? We always spent our summer holiday together. It wasn’t fair that he wouldn’t get to walk the beaches and do all the things which I had told him we would do there. And how would he feel about being left behind? Surely that was likely to make him even more upset? I prevaricated for 24 hours while the holiday cottage I had booked stood empty. Then, the next day, I decided I would risk it. I telephoned the home again: ‘I’m so sorry to mess you around but I think I would like to take Dylan with me after all. Do you think you could help him to pack his bags?’

In the event Dylan was a dream. He was calm and happy all week (even  when the heating in the holiday cottage broke down and we had to manage without hot water for two days).  Potential flashpoints – being overwhelmed by goodies in Barter Books, the bus that failed to turn up – were shrugged off by Dylan with maturity and humour. Spending time with Dylan was a joy…

Precious Space

One of the things which is desperately important to Dylan – and which on this occasion we realised we had got wrong – is that his week must end with a visit home.  I had planned to pick Dylan up en route to the holiday cottage, rather than having Dylan at home the evening before departure, so his weekly programme had ended with a symbol for holiday rather than home.  Although you might think a holiday would be more exciting than a trip home, it may be that Dylan’s distress was triggered by his week not ending where he likes it to.

Although this doesn’t explain the incidents more generally (as Dylan’s programme usually does end with him coming home) it does offer a possible clue as to the source of Dylan’s distress.  Since we returned from our summer holiday it has occurred to me that perhaps what is important about coming home, for Dylan, is the opportunity it gives him to have some peace and quiet. Maybe he looks forward to his visits home not because they involve seeing me (although I’m sure he likes this) but because of the precious space it gives him from other people.

Group Living

Residential homes for adults with complex needs are busy and sometimes chaotic places. Although they are routinised they are also unpredictable environments as the individual needs of residents emerge and require response. For Dylan – who hates noise and has very low tolerance of others – this must be a challenging and sometimes stressful environment.  The mix of residents in a care home is not something any individual has control over – they are a cluster rather than a group – and there will inevitably be clashes of interest and personality.

I had hoped that living in residential care would provide Dylan with opportunities for social and emotional learning, teaching him key skills such as empathy and negotiation in order to live effectively alongside others.  Conscious that Dylan had spent the significant part of his life alone with me, I was attracted by the idea of group living and the possibility that Dylan would enjoy and respond to a livelier home environment than the one I had been able to give him. I even let myself imagine Dylan developing a special relationship – dare I say ‘ friendship’? –  with another resident.

My dream for Dylan probably included a good dose of neurotypical projection; my assumptions about group living, and its potential benefits, were based on my own beliefs and ideas about life as a young adult, rather than viewed through Dylan’s eyes. Recently I’ve realised that the other residents at Dylan’s home are probably nothing more, as far as Dylan is concerned, than an irritation ranging from minor to major proportions.  As a slight irritation they are useful; pairing residents up for outings leads to economies of scale which mean trips can last longer and be to places which are further away and more exciting.  When tolerance levels are low, however, such arrangements are out of the question; even having to share home space, at these times, is a challenge for Dylan.

There have been a number of low level incidents between Dylan and other residents recently which are probably illustrative of Dylan’s need for space.  As a result, Dylan’s programme has been reviewed and his ‘paired activities’ reduced.  Although this means he has fewer ‘big trips’, the impact on Dylan of other residents (and vice versa) is reduced. While it is possible to manage daytime activities in this way, what is perhaps less easy to mitigate are the effects of group living at night.

I don’t know from experience what a care home is like in the evenings because it’s not a time when I visit. It is widely reported, however, to be a period when the ‘institutionalisation’ of residential settings is most obvious. The staffing and environmental pressures tend to be high during the evening; all residents need to be supported with their bedtime routine, often simultaneously and before the arrival of overnight staff. Some residents may have particular anxieties around bedtime, needing  repeated reassurance and the comfort of an individual routine. This is certainly the case for Dylan who expects particular phrases to be spoken, objects to be placed in specific places and bedtime routines (such as going through the next day’s schedule) to be done twice.  Not adhering to his routine makes Dylan anxious and unsettled as, presumably, is the case for other residents.

There will be times, I’m sure, when everyone requires attention at the same time or when one or more of the residents are particularly anxious and need extra support. Responding to  these complex individual needs  must be challenging for staff working in residential settings.  Such evenings will be difficult for residents too; it’s hard waiting for help with something we can’t do for ourselves. Perhaps Dylan’s unsettled evenings are, in  part, a response to the challenge of group living?

A Room Of My Own

My daughter is about to move into shared university housing and I’ve been chatting to her about this over the summer and recalling my own ‘group living’ days. While not wanting to put my daughter off, I couldn’t help but be honest with her the other day: ‘you know what, darling? I hated it.’

Although I appreciated the benefits of my years in shared accommodation, I was relieved when I finally managed to rent a room of my own.  Whatever flexibility and tolerance I may have had in my late teens and early 20s was running out by the middle of the decade; I didn’t want to live with other people’s mess and noise anymore.  I hated getting home to find dirty pots in the kitchen and the sound of a TV or music system booming.  I had learned to live alongside others but I found it stressful; the economic benefits of shared living no longer outweighed the anxiety it provoked.

As I reflected on this I thought about Dylan. I don’t have an autism diagnosis and I found living in shared accommodation difficult – Dylan’s preferences  (keeping windows closed, putting things away as soon as they are used, ensuring nothing is out of place) suggest this is likely to be particularly the case for him.  Certainly Dylan will find noise a challenge; at home, he often asks me to turn off or stop making sound which causes him discomfort or anxiety. The environment is not something Dylan can control in a group living situation, however, and this is no doubt a potential source of stress for him. Even without his complex disabilities,  Dylan’s patience for shared living may be running thin; he is nearly 24, an age at which many young adults start to think about a room of their own.

When Dylan was a small child I assumed he wouldn’t change fundamentally, only grow bigger.  His progress through childhood proved me wrong and his developmental steps – albeit slow and idiosyncratic – surprised and delighted me. The recent developments in Dylan’s behaviour remind me that he will continue to mature as an adult. I hadn’t  previously considered that the type of adult provision Dylan requires might change –  I had assumed the severity of his autism and intellectual disability meant residential care was the only viable option. While residential living is appropriate for Dylan at the moment, now I am wondering if this will always be the case?

A seed has been planted in my mind; perhaps Dylan could live in more independent accommodation, alongside, and as a satellite of, linked residential provision? Dylan will always need 24 hour support and access to specialised care and resources, but the environment through which this is provided could change as Dylan develops. Having to consider what is best for a person who lacks capacity is a burden of responsibility, as well as of love, but  if I were to hazard on what Dylan dreams of, I might say:  ‘A room of my own, one day’…