Day 39: Illuminating Self

clegg sculpture 015Supporting someone into care, I am realising, raises all sorts of issues which are not just about care-giving in a practical sense (washing, dressing, feeding etc) but about cultural practice. So when Dylan moved into his residential home he didn’t only bring his care needs (to be supported to bathe or to access the community safely) but a complex web of socio-cultural practices which have developed during his life time.

By socio-cultural practice I mean (at its simplest) Dylan’s lifestyle: his leisure activities in and outside the home; the holidays he takes; where he shops; the cafés he uses; his choices about diet and clothing etc. Embedded in these practices are values; Dylan has, over the years, become acculturated to certain rituals (such as a blessing a meal) and to the particular models of social interaction he has been exposed to (holding doors open for others, for example). It is these practices which connect Dylan and I in the web of our shared lives.

Although many of my reference points are also Dylan’s, not all our values and cultural practices are shared however. I sometimes think of ‘autism’ as a culture in its own right, with its own social and linguistic norms, some of which compete with my values and beliefs. Furthermore, as Dylan builds a separate life, independent of me, his socio-cultural practices will evolve. The fact that Dylan has moved into residential care (rather than any other setting) will affect his developing beliefs and practices; the community he now lives in will influence his life differently to the way it was influenced by the time he spent with me.

While it’s relatively easy to let go of responsibility for care giving, it’s much harder for me to give up my sense of shared values and beliefs. So yesterday, when I wondered if my ‘small niggle’ was important enough to act upon, the question I was asking myself was whether my concern was one that Dylan was likely to share. Would I really be acting for Dylan? Or was this more about me? I decided, in this instance, that the thing which was bothering me was my stuff, not Dylan’s.

There is a sense in which supporting a relative into care is self-illuminating. Because the process has required me to think about and articulate my life with Dylan in some detail, I have found myself reflecting on the values which underpin my preferred ways of supporting him. The way we care for someone is an expression of our own values and beliefs as well as those of the person being cared for; in sharing the care of Dylan with others I have to make space for alternative perspectives and practices.

Some of our socio-cultural practices, however, are so embedded they feel less negotiable. Religious beliefs, for example, might claim a particularly defended space. I remember that the factor which made the difference to my Grandmother finally agreeing to move into a care home, shortly before she died, was the fact it was a Methodist Home. My Grandma’s faith was central to the way she lived her life; whereas she had previously resisted suggestions of a move to residential care, she was comfortable in an environment where her values and beliefs were shared.

So today I have been reflecting on the cultural practices which I consider to be embedded in Dylan’s life. Which changes to practice have I resisted? Where are the potential areas of conflict – the things I haven’t dismissed as ‘teeny weeny niggles’ but acted upon? I found several issues in my emails and scribbled notes to myself but two things seem to have particularly preoccupied me in the weeks since Dylan moved to residential care: food and clothes. I’m not at all surprised by the former but the latter may need a bit of unpicking. Today’s question to myself, though, is how do I know that these issues are as important to Dylan as they seem to be to me?

7 thoughts on “Day 39: Illuminating Self

  1. Of course if Dylan was not autistic, he would, at his age, very likely be asserting his own changes to the culture he lives. These changes might even include outright rejections of beliefs and practices that are dear to you.

    When my eldest daughter was only 6 months old I had an insight that has powerfully shaped my parenting ever since. She attended an infant care centre at my workplace from 4 1/2 months old. At the centre, one of the features was an aquarium full of brightly coloured fish set into a wall at floor level. The caregivers would prop her up with pillows where she could watch the fish. Jill LOVED those fish, and the caregivers would often remark on that on her daily reports. One day when I arrived at the daycare to pick her up she was sitting happily in her fish-watching spot. She didn’t see me come in, and so I was able to watch her for a minute– to see her reactions to the colours and movement of the aquarium’s inhabitants. Suddenly it struck me that, even from this early age, my child was going to have a whole lifetime of experiences that DID NOT INVOLVE ME, and that I needed to be OK with that. That perspective has been my salvation though a lot of challenges and transitions.

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  2. sucks to discover my own control issues and ocd type stuffs that i hid and called his autism, however, for me it’s worth the finding out and i can eradicate them!

    I used to wonder in the end, when a carer lives 24/7in such a structured environment, if our charge needs it, or WE need it to cope with the constant unpredictability of autism–deal with our own anxiety and resistance to change. I didn’t like finding out how many things I needed to control and called it caring.

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  3. In the case of your grandmother, I suppose, the provision for her beliefs and practices was more straightforward because the home had an overt group identity that she was already part of. The problem for many care homes is that they have no clear identity or overt set of values and often operate primarily as a business venture. So, however well intentioned the care, the home will be trying to appeal to a broad spectrum (no pun intended).
    The identity that comes from cultural practices comes in turn from a sense of community which I think can only really develop through participation in that community. In a care home setting, this means involving relatives and advocates, as well as residents – and it means another vital strand to care that is often avoided. You raise an important issue well, Liz.

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    • Thank you Caroline – I hadn’t thought about the ‘overtness’ of identity but, yes, you’re right. Usually we have to try and pick up a sense of a home’s ethos and ‘culture’ from a visit – such a hard thing to do! I am very happy with the home Dylan has moved to but I remember when I was visiting a variety of settings, trying to decide what to do for the best, I puzzled as to how I could make a good judgement call about a home’s ‘beliefs’ from a quick visit. In fact at some point I tried searching for ‘care home for learning disabled/autism’ by overt identities (including methodism!). I suppose I was hoping for someone to make it more straightforward for me. You know I hadn’t thought about my Grandma’s care home for years – I wonder if reading your blog about caring for your dad partly triggered it? Your comment suggests there are probably interesting similarities and differences in the scope care homes have for building a sense of community/group identity (and thus a set of shared ‘cultural practices’). This is such an interesting issue to me – it is so hard to put a finger on a care home ‘culture’ or explain how it comes about, but it has such an impact on the residents. Thank you for helping me think, as ever 🙂

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  4. Pingback: Day 68: Context | Living with(out) Autism

  5. Pingback: Day 76: Food As Cultural Practice | Living with(out) Autism

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