The last few months have been a series of big moments. The diagnosis was a big moment. Coming to terms with the diagnosis was a big moment. Getting Christian into our first choice of school was a big moment. His first day of school was a big day. In between the moments, however, it can feel a little like being tossed around by the tide. Life washes us from side to side with our toes touching the bottom every now and again. I think I’ve prepared myself to embrace this feeling for the foreseeable future.
Another big moment was watching Chris Packham’s documentary, which contributed in no small way to us realising that we need to get our act together.
When I started doing research the first thing I learnt is how little I knew. I realised that there is a whole world that I need to get to know. A world that my son will be living in and that I will need to get familiar with pretty damn quick.
At times like this I realise how lucky we are. We live in the best borough special needs provision in London. My sister has an autistic child and spends most of her time helping parents of disabled children, my father is an exceptionally accomplished medical professional, and we have access to all the information in the world at the tip of our fingers. Yet we feel lost sometimes. Such is the nature of the broad ASD spectrum that it is quite a task figuring out what Christian’s specific issues are and how do we deal with it. How do we know when he’s just being a child pushing boundaries and when is his behaviour a result of his ASD.
We don’t know yet. We will figure it out though.
I’m working on a framework to structure our research and actions in an organised way so that we make sure we deal with it effectively. I aim to share the framework on this blog over the next few posts.