Day 41: Like Home Used To Be

WP_20150531_19_53_09_ProDylan is so happy to see me when I go to pick him up. He is always in his coat and hat, waiting with his bags packed by the door. As soon as I arrive he wants to head off, get on the road. It isn’t that Dylan is unhappy at the care home; he just appreciates his visits to our home.

After the troubles of last year I can’t describe how blessed this feels. Dylan and I had always had a gentle relationship so when he developed aggressive behaviours after leaving school I was deeply shocked. With guidance, I tried everything I could to support Dylan; although some things seemed to help a little, nothing made a reliable difference.  With Dylan still volatile and prone to violence, we lived on a knife edge. As his behaviour became more extreme, respite provision was withdrawn; eventually, unable to take Dylan into the community alone, I lived under siege at home.

Once it became clear that I could no longer keep myself or Dylan safe, the move to residential care was inevitable. Perhaps because there was no alternative, it was a development that was difficult to regard as anything other than preventing a situation from becoming worse. How marvellous it is, then, to find that after only a few weeks the situation is not only not worse, but better; the outbreaks of aggression have virtually disappeared and life seems to have restored itself to ‘normal’. Dylan and I are enjoying spending time together again; it’s like home used to be.

In yesterday’s post I speculated that the ease of Dylan’s move to residential care might be as much about things that have been removed from his life as about those which have been introduced. Today I set out to test this by thinking from Dylan’s perspective, not about the things he has gained but what he might have lost. Was there, I wondered, something that Dylan had found difficult when he was living at home full time?

  •  Being parented by a single person might not be easy if you are a child/adult with high needs.

It’s easy, as a single parent, to forget that it might be as hard work for our children as for us. While Dylan and I benefitted from a 1:1 relationship in important ways, the intensity could be challenging.  It’s possible for life with one other person to become routine and predictable. Contrary to popular belief, too much of this can be as frustrating for autistic people as for non-autistic people; Dylan certainly likes life to have a bit of variety. Going into residential care means Dylan now has contact with a range of people and I am a treat instead of a routine.

  • Being parented by a working parent might not be easy if you are a child/adult with high needs.

I used to imagine that my children would think me a great role model if I worked full time. I’m not sure, now, that my daughter would agree and the concept is quite meaningless to Dylan. While they probably benefitted indirectly from my professional life, I suspect my children would have preferred me to be around more. While this applies to both of them, the impact on Dylan was greater in adulthood due to his lack of ‘independence’. Because I worked, Dylan had to go to a day centre every day (instead of doing other things). And because I worked, Dylan had to get up early in the mornings (which he hated) in order to get on the bus for the day centre. Moving to residential care means Dylan is able to establish his own morning routine and follow a programme designed around his needs. It is always challenging to combine work and parenting but there are particular issues for parents of disabled adults; writing this post has made me realise there may also be issues for adults who depend on working parents for their care.

  • It might not be easy for a child/adult with high needs to live in a home environment.

Dylan loves his home; it’s a space which has always seemed important to him, emotionally and physically, especially the areas which are personal (his bedroom, for example). But having watched Dylan in his residential home (where there are lots of different types of indoor and outdoor space) I can see that it has probably been challenging for Dylan to live within the constraints of a modest family home. The home can be a very challenging place to keep safe for an adult with autism/learning difficulty and an extremely scary space to manage during an ‘incident’. Maybe this sometimes contributed to, or at least escalated, Dylan’s behaviours and  distress.

The challenge I set myself today was to think these issues through from Dylan’s point of view instead of my own; I have, to some extent, found that helpful.

note:

I have used the term ‘high need’ in places. I’m not sure I’m entirely happy with it. It’s an attempt to capture the particular combination of autism and learning difficulty and lack of speech which requires 1:1 support (whereas each of these conditions by themselves may not). I don’t like the use of ‘need’ though. Still looking for a good alternative…

9 thoughts on “Day 41: Like Home Used To Be

  1. The statement ‘It might not be easy for a child/adult with high needs to live in a home environment’ struck me forcefully. We always assume home is best. This may apply (I think) to people with Alzheimers too, though when asked whether they want to stay in their own home or (whatever the alternative is) they will always reply ‘home’. The word ‘home’ has all the connotations of safety and bestness, like ‘family’, but doesn’t always deserve them.

    And going to a ‘home’ (the other sort, the residential care establishment), even though it’s the same word, manages to have all the other sorts of connotations (workhouse, locked doors, carers, school dinners). A bit like how ‘asylum’, which once meant place of safety, came to mean madhouse.

    You wrote at one time about how Dylan, as a young adult, might need to leave home. When I finished my degree, I went back to live with my parents for a while, and it was awful. I was hugely uncomfortable (and difficult) in my own home, and much nicer when I managed to move out again and come home for visits. So maybe in some ways what’s happening with Dylan is ‘normal’. 🙂

    Like

    • Nell that is so interesting to me – the connotation of ‘home’ as positive if with the family and negative if part of a non-familial group. I would very much like to see the residential care setting reclaimed as a positive – perhaps it would need to start with reclaiming the concept and language of ‘home’. You’re right, I did reflect in the past that Dylan might one day need to leave home – I remember the period when I could suddenly see it as a positive option rather than some sort of failure. As you note, leaving the parental home is ‘normal’ – I hated having to spend more than 24 hours in the home of either parent once I’d left (at 18). I see my daughter going through the same thing right now – so, yes, there is a sense of normality in what is happening to Dylan. I think it has been so positive for him that what I am doing (with my tendency to over-think things) is ruminate on what might have been hard for him, previously 🙂 I was about to say ‘whereas my daughter would just tell me’ – except I’m not sure that’s true! So I suppose I’m interested in this whole thing around how we make good decisions for people who can’t tell you what they would like (complicated, of course, by the fact they might not know). Your comment reminds me, again, of the connections between learning difficulty/autism and elder care – as well as Dylan’s similarity with any 21 year old. Thank you!

      Like

      • I’m beginning to think that the theme of home is a rich one to explore, in terms of positives and negatives at different stages of a person’s life. My son behaves very differently towards me in his own home and I can see how our relationship improved when he found his own place in the world, as distinct from his parents’ place. However, for my father, the care home he resides in isn’t his own home in the same way as my son’s home is his own – but it does support him to feel more secure than he was in his own place. I think home is about feeling safe and somehow, sorry if this sounds vague, an alignment of inner and outer conditions.
        I think it’s very useful to imagine things from another person’s viewpoint but also really difficult. It’s also useful to think, as some pragmatic people say – it is what it is….

        Like

      • Caroline you raise so many interesting issues. The pragmatism? My view is that I can say ‘it is what it is’ about my own life (and I do) but I can’t about Dylan’s. The point of being an advocate, for me, is to always ask whether there is something I need to understand better, represent better or try to change. Sometimes that involves a pragmatic choice – leaving things be – but I probably ask more questions about Dylan’s life than about my own. I haven’t really thought about this before though – I will some more! As for ‘home’. Yes, oh yes 🙂 I find myself increasingly interested in what we mean by this and what meaning it might have for Dylan. A thorny elephant in the room (or the home) is that in elder care this is where people go for the end of their lives, while in residential care for young adults, like Dylan, the future stretches ahead in continued uncertainty. How wonderful it would be to think that Dylan could live in his new home forever, in a settled community? Except that advocacy also requires continuing review to check that needs are still being bet – plus there is the challenging factor of policy shifts in care and the uncertainty about funding. All these things will influence the extent to which we do (or don’t) consider a residential setting a ‘home’. Is there something about ‘independence’ and ‘ownership/control’ in there too (thinking of your son in his home and in yours)? I think it’s worth asking these questions because surely the aim is to help our fathers and sons feel truly ‘at home’… x

        Like

  2. Pingback: Day 43: What Parents Don’t Know | Living with/out Autism

  3. Pingback: Day 50: Light Bulbs | Living with/out Autism

  4. Pingback: Day 85: The Library | Living with(out) Autism

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s