One of the most enduring experiences for me as the mother of an autistic child, is a deep and growing sense of isolation. No, not just a sense, a reality of isolation. There was a time when the reality was devastatingly obvious to anyone who knew me, because I couldn’t talk on the phone or in person or have anyone around the home if my son was around, and my son was almost always around because he was so hard for others to look after. My son would violently attack me or others if I tried to communicate – or at times, even be in the same room – as others. Now, with his autism affecting him less severely, the isolation is just as real, but subtle and so much harder for others to understand, and that inability to make others understand becomes itself further isolating.
I reached a point recently where I gave in, I gave up. Interacting with what few adults were in my life was itself depressing; they talked about places they went and things they did and freedoms they had that were constant reminders of what my life isn’t and maybe never will be now. I realised that whenever it was my turn to become an active participant in a conversation, that everything that came out of my mouth just made people give me piteous or worried stares, so I started trying to avoid having to share my life with others at all, and heavily censored what I did share so it didn’t sound so bad. And then I withdrew even further, trying to back out of any interactions and pulled away from social media.
There came the day I disconnected the internet, turned off my cellphone, pulled the phone jack out of the wall; I figured I might as well truly embrace the isolation instead of fighting it. It was inevitable after all, why spend so much energy trying to overcome it. I accepted that the focus of my life was what it had been anyway for the last many years: my son’s (or sons’) autism. I would interact with what few adults I had to help my sons, but beyond that I would be alone, because it was all too hard.
This sense of isolation had become so much worse when my son shifted from a special school to a mainstream school two years ago, because I was no longer regularly interacting with people who actually understood my life. The autistic and other special children, their families, the access to teachers and therapists on a daily basis who got my son and my life and made me feel normal – all gone. My son used to get invited to many parties a year back when all the kids in his class were like him and the parents saw us as wanted and normal. Now he gets invited to one friend’s party a year by the one friend he has that he only became friends with because they were buddied up by the teacher last year. The friend is lovely and his family is awesome – don’t get me wrong – but that’s all my son has now. We don’t belong to the wider community. The birthday party I threw for my son last year, only one child who had been invited turned up – the one friend. It breaks my heart for my son, and it deepens my personal sense of isolation.
Then something happened on Monday that finally pulled me out of my growing funk. I attended the opening of a new satellite unit at a local school – a satellite unit is a class of high needs special children (with associated high teacher ratios, resources and skilled therapists) placed within a mainstream school. And at this event I saw the principal of my son’s old special school, and I hugged her and we discussed advocacy issues. And I saw my son’s old special class teacher, and we hugged and celebrated how well my son is doing. And I saw my son’s old preschool support worker, and we hugged and rejoiced in her recent success in getting more work as an aide within the school. And I saw a few of the children from my son’s old special class, and just seeing them and their stims and their unique ways, just lit me up from the inside. I caught myself smiling and realised it was a genuine smile, not a forced one. I had human contact, with people who truly understood me and my son, and it was bliss. Brief, but beautiful bliss.
So now here I am blogging again after a hiatus, because I feel like sharing and reconnecting again – I’ve had that little lift I needed to stop feeling sorry for myself and just get on with life again. The cellphone is back on, internet is all go, and back on social media all my lovely online friends were still there for me.
I know there will come a time again that the isolation builds and overwhelms me, and the foreign-ness of my life from those around me starts to hurt, but I’ll know next time to reach out and try to make physical contact with the disability community, a community that celebrates the little things, and fights to make this a better world for people like me and my son, and who “get me.” Because I need to be gotten – I think we all do.
I’d like to think that in a more inclusive society, perhaps I wouldn’t feel so isolated, and there would be more people in everyday life who saw and understood and cared about these different lives we lead. But maybe it would make no difference too – maybe isolation is a part of the parenting experience when your child has autism, and us parents just need better counselling and support to navigate it. Maybe it’s a necessary part of making it through that we become part of the local disability or autism community, and that’s not such a bad thing anyway. Lots of maybes. I think ultimately we have to find what works for us as individuals; for me that seems to include a cascade of heart-felt, much-needed and well-timed hugs.