Since my encounter with another parent last night I have been thinking about how we can learn from and support each other. I had only a brief conversation with the other mother but it was very helpful. She told me, for example, that when her daughter first moved to the residential home she would expect to go out as soon as her parents arrived. It had taken a long time, the mother told me, for her daughter to be able to spend time with them in the home. As Dylan seems to have similar expectations currently, it was good for me to hear this.
This mother is two years down the road I am just setting out on; how useful I would find it, I thought to myself this morning, to chat to her some more. So I emailed the care home managers; do they ever hold, or would they consider hosting, a social/support group for parents? Perhaps, I suggested, some of the questions I was currently asking staff could be just as easily answered by parents?
On Day 30 I mentioned that one of my uncertainties is how involved I should be in Dylan’s care; there is no manual for being a parent of a child in residential care and everything, including the pattern of visiting, can raise questions. Perhaps not surprisingly, therefore, this was one of the things I asked the mother about last night. The answer she gave would probably have unsettled me a few weeks ago; it seems she visits her daughter more regularly than I visit Dylan. I must be getting better at weighing individual circumstance though; ‘sounds like you might live closer than me?’ I suggested. Afterwards, driving home, I reminded myself that other factors are involved in these decisions too: work commitments; whether there are one or two parents; and, importantly, a son or daughter’s wishes and needs.
That we can’t make judgments about parenting without some understanding of the child being parented is something I have been conscious of today. Dylan and I went to a Tramway Museum where we are regular visitors; because it is half term week, however, it was busier than usual. Dylan coped extremely well and I didn’t have to intervene at any point (to explain or distract or redirect or request). Because I’m used to having my antennae switched to on, however, I picked up the intercessions of other parents; they didn’t look much different in some ways, I thought to myself, to life with Dylan.
I have lived with autism so long I’m not convinced I can separate ‘autistic’ and ‘non-autistic’ anymore: I just see Dylan. So when I consider other children I’m not sure, sometimes, quite what I’m seeing. ‘Is that autism’, I ask myself, ‘or something Dylan does too but not because he’s autistic?’ Today I watched a little girl leaping from stone to stone on the labyrinth. She was making an odd whooping-panting noise with every step and I wondered if she had some sort of respiratory issue. After she had gone Dylan climbed on the stones and started leaping around the spiral making the same noise the girl had made. Ah, I realised; it is simply self-praise at the relief of each leap.
The similarities between us are, perhaps, as illuminating as the differences. Through watching and listening to other children and parents we learn about ourselves; this can be as helpful for parents of autistic children as for those with non-autistic children. I saw young children today who were struggling with many of the things which challenge Dylan. It was interesting for me to watch the ways in which their parents responded; although a whole variety of styles were on display, there did seem to be a tendency to reprimand and the word ‘no’. What impact, I wondered, does this have? Do children who are told ‘no kicking’ and don’t fidget’ become adults who needs to be told not to spit?