Day 43: What Parents Don’t Know

Inverness 2014 106Somebody 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.

5 thoughts on “Day 43: What Parents Don’t Know

  1. I think this is the first post in which I have fully realised what the 100 day period might be about. I had a really strong sense in this post of unravelling – although you only spun back through two previous posts, you also cast a long lens onto the issues of the last blog and the ideas you had to work through then. So, It looks to me now as if the 100 days is there to let you make retrospective sense of what has already happened, as much as to document Dylan’s transition as a linear process which will take him (and you) into the future. So perhaps this is what transition actually is – a kind of cyclical reckoning before the past becomes more dim and distant?

    Liked by 1 person

    • Caroline thank you that is so helpful – I like the idea of a ‘cyclical reckoning’. Sometimes it seems to me that I have hit ‘pause’ on my life and am taking this 100 days to just sit and think forwards and backwards, and in the present too, to ‘reckon it’ (to borrow your phrase) before moving on. I wasn’t sure for a while whether this was wise but I am increasingly glad for having set the time and space aside to do this. I don’t want to be a stuck needle in a groove but I do find it helpful to look back and make that retrospective sense… Thank you, x


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

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