Dylan 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 As his behaviour became more extreme, respite provision was withdrawn; eventually, unable to take Dylan into the community alone, I lived under siege at home.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.
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…