When you live in an autism household, the outside world can take on a different hue from time to time, a hazy, dreamlike quality that you don’t fully feel a part of outside society any more. So much of our time is focused on autism and micro managing our life to suit autism that we sometimes feel like life is a river that we are floating down all alone. I know we’re not and that people are always willing to help or would be if we asked, which we don’t because Sam isn’t ready. (Yet!!) we’re sailing along our own river in a boat built for 4.
This autism bubble – I refer to it that way quite often I think, is entirely personal, just as any issue you may be having yourselves or with your children is all yours. No one can presume to understand or know better, though I found myself (for a short while) thinking I knew better myself a few weeks ago…I was invited to go on a speech therapy course for six weeks, designed for parents of autistic children to learn a new way of helping their children to communicate. It was quite open forum and to respect their privacies I won’t mention any specifics. Just that some of the views of the parents seemed a bit backwards to me. Most of the children developmentally seemed so much more advance than Sam that I wondered what they were doing. I’m ashamed to say I did a sly eye roll at a few of the points raised or reasons for behaviours. Until I realised that I’d already done a course that this one was based one about two years ago. Id been practicing the techniques that they were beginning to talk about with Sam for that long too. My son might still be behind all of them in developmental terms but I am two plus years ahead in my understanding of autism. I got home that day and felt a bit of a self-righteous dick to be honest. I hadn’t listened properly to hear them all saying their children had been recently diagnosed or were still going through diagnosis. The point is that even if I had listened, that didn’t give me the right to feel superior in my knowledge. *I’m not an expert on autism. I’m an expert on my child with autism * not my words but something that’s stuck!* and those parents are on a journey that yep I’m glad I’m not at the beginning anymore, but it’s a journey I needed to make. As do those parents in that room that day. I don’t know better, well in a way I do but only when it comes to my son. I and nobody know your child better than you and as those parents go into their own bubbles they know that with certainty they are the experts on their own children.
My own view of autism and parenting is that we are all sailing down the same river, but we are all in different boats. We understand each other to a point but our journeys are our own.
Note to self: you’re never going to know everything. My life is not more important than yours. My experiences do not make me an expert!!! Saying that though you will always find a friendly ear from me 💙