Somebody I know happened to see Dylan today: ‘he had a big smile on his face’, she emailed me. This sort of information is like fairy dust; sparkly stars bursting suddenly, and quite unexpectedly, over my head. I found it reassuring of course – like the moment in the playground, before your child realises you are there, that you watch them playing contentedly. This world is their secret, one which you can only hope they will share with you if ever it makes them sad.
I have found being the mother of a child who can’t easily share such things very hard. In fact it is probably the thing I have worried about most over the years. What can’t Dylan tell me? What don’t I know? Conversations can be difficult – there are things which plenty of people struggle to find the words for – but there is so much more that can’t be said without speech.
On Day 40 I reflected on the role which visual information plays in Dylan’s life; in the absence of speech, I noted, my understanding of Dylan’s needs and desires was built through observation. I have found the process of choosing schools, day centres and residential settings on this basis scary. How would I know I had interpreted Dylan’s response to a setting correctly? There is so much that parents can’t know from a visit – what if I overlooked something important to Dylan? How would I know?
I think I did know, from Dylan’s behaviour during the last year, that something was wrong. Still, I found it difficult to ‘read’ the information. I spent months chasing down possible explanations for Dylan’s distressed behaviour but never came close to an answer I felt could really help. It was hard for me to feel helpless in this way – to realise there was something I just didn’t know.
I am pretty sure I know three things which have made a difference to Dylan since he moved to his care home. But I’ve also asked myself whether Dylan’s move may be going well because it represents an ending as well as a beginning; could there have been something in Dylan’s life which was causing him distress previously and from which he is now free? To consider this possibility I have tried to adopt Dylan’s perspective; how did home life look, through his eyes, I asked on Day 41 (putting myself under the microscope)? Today (eyes full of fairy dust): how did his day care look to him?
Honestly? I didn’t realise at the time but, with the benefit of hindsight, I’d say it didn’t meet his needs. Dylan had previously attended a National Autistic Society school where he had access to an autism-specialist environment and curriculum. The day centre for people with learning difficulties, by contrast, was noisy and busy and couldn’t provide the support Dylan needed with communication or to access the community; this, I now realise, is essential for Dylan who needs variety as well as routine. The days must often have seemed very long to him.
What I find puzzling is that I didn’t see this at the time. What criteria was I using to select day care I wonder? Didn’t I consider that some of the features of the centre might make it less than appropriate for Dylan? Even challenging? There must have been a lot I didn’t know when I decided that it would probably be OK for Dylan. What I couldn’t possibly have known, however, was how difficult for him some of these features would turn out to be. I can’t know this, of course, but I suspect it might have contributed to the behaviours which later emerged.
This is one of my favourite smiling photos of Dylan; his eyes are so happy! It was taken in Inverness in 2014, shortly before life started to get difficult. Recently I have seen (and heard reports of) that smile returning.