When my son was born, I predictably went over-board with the photo-taking. I couldn’t get enough of my gorgeous child. I particularly wanted to capture all his “firsts”, but they were few and far between. He was in no hurry to explore or interact with the world, so I settled for just taking photos of him being so darn cute. As time went by though, it became harder and harder to take any photos – what should I be capturing? The crying, the screaming, the endless lining up of cars? Then I became so busy just trying to handle his meltdowns, that there was no time to pick up a camera, let alone print off and file away photos.
We were descending into what I think of as “the dark years”. There is little photographic record of this time, and it’s not the sort of thing you want to remember either. It was years of being afraid of waking up each morning, because I knew what the day was going to be like: Endlessly (and usually fruitlessly) trying to interact with my son, and just dealing with his anxiety-ridden misery. Years of looking forward to night-time so it would stop, and counting the hours (and sometimes the seconds) until the day would end. It was at it’s worst leading up to, and the couple of years after the diagnosis.
While I was learning about autism and how to handle the condition in my son, I had to come up with my own ways of making sense of the madness I was observing: Why did he have his meltdowns, how could I avoid them, what were the signs they were coming, what could I do to fix them. I came up with my own terminology and analogies: “anchors“, “the filling cup”, “invisible red paint“. (All of which will eventually have links attached to them as I write the future posts in this series.) I would use these ideas to explain to his therapists what I had seen in my son, and to talk to my husband and others about what was going on.
Even now that I have a better understanding of how autism is affecting my son, and have access to various pieces of terminology for what I was observing, I still often think in terms of those original ideas I came up with. They help me figure out how to keep him calm, when to push him out of his comfort-zone and when to leave him alone, and what objects in the house I shouldn’t touch and why!
These days I’m back to taking photos almost everyday. Life is still a daily challenge because of my son’s autism, but my days are filled with things I want to remember, rather than wish I could forget. I think it’s important though to provide some record of those darkest years. Without photos, the next best option I have is writing about it, and so you can perhaps understand why this blog is really very important to me. A place to record those observations I made from within the darkness.