There is a man that I used to see a lot of around my town. He is in his early fifties and walks with his head slightly bowed and his upper body pitched forward, almost as if he is going to trip over but he never does, not when I see him. He wears natural coloured clothing, always in shades of beige or brown and always he has a shopping bag over his arm. Every now and then he shouts out loudly, nothing comprehensible, just a mix between a shout and groan. But that is the way he is and those of us living in our town have come accustomed to him boarding the bus and going around the shops.
But then when my son was diagnosed with ASD I realised with sudden clarity that this man was like my son, autistic. This was something that was later confirmed to me by someone who knew someone who knew his family. I didn’t make a point of finding out whether he was autistic or not; someone just volunteered the information. Perhaps they thought it would be helpful for me to know that I wasn’t the only mum to have an autistic son. Nevertheless, it made no difference to how I thought about him. He was still the man that boarded the bus and walked around town and who occasionally shouted but he was no harm to anyone and led what seemed to be an independent life.
But then whilst talking to a friend, I learnt that his elderly mother who had been his carer had passed away and it made me think about the work that she had done to enable her son to be part of our community. For over 50 years, she had cared for her son, a lifetime of dedication that enabled her son to lead a partly independent life. It is an incredible achievement, I think, but one that unfortunately receives little recognition in our society. There will be no elaborate funeral or obituary in the newspaper praising her for her lifetime’s dedication to ‘care’. Instead the passing of this woman has been uneventful and all the work that she has done will be taken for granted by wider society.
Care just isn’t in vogue.
And yet her work is no less important than those in public or paid positions. Indeed with her passing we have a lost a lifetime of experience of caring for an autistic person. I often think how wonderful it would have been to have sat over a cup of tea and listened to her stories and experiences raising her son. From an elderly woman to me as a younger woman, I’m sure she would have passed on a lifetime of tips that would have been much more valuable to me than any of the textbook based advice from professionals. As it is she is no longer with us and I can only hang on to the knowledge that people like her have paved the way for what parents like me are doing now.
But her passing is felt in other ways too. A while ago, I saw her autistic son in a supermarket of all places, not on his own as I used to see him, but with a bored looking assistant. I couldn’t help but feel quite concerned that he ended up having a support worker that looked like she didn’t enjoy her job. That was a couple of months ago now. I haven’t seen him since which worries me more because I don’t normally go this long without seeing him waiting for the bus or walking around our shopping centre. It makes me sad that this once partly independent autistic man may now be stuck in a home somewhere or perhaps has even died himself.
I hope he hasn’t. I hope he is safe and well looked after wherever he is but what it does show, I think, is the incredible work of his mother who enabled her son to enjoy a life of independence whilst she was alive.
This post is day 22 of the nablopomo challenge where I have to submit a blogpost every day in the month of November.