I’ve been cleaning up my half-written draft posts this morning (which mostly means trashing them) and stumbled on this one. I wrote it about two and a half months before Owen died.
August 6 2010:
For the past 2 (or more?) years, I’ve distanced Owen and myself from any kind of institutional intervention or therapeutic activity. We do our fair share of medical appointments and check-ups and things, but nothing preventative or programmatic. Instead, I use our respite funding to hire enthusiastic, loving and intelligent support to take Owen out into the world and just, well, go do stuff. In good weather, they go to the Royal Ontario Museum, the Science Center, the Art Gallery of Ontario and the community center and Bloorview for swimming. They go on long walks, they run errands, they take the subway downtown, they watch every new kids’ movie that comes out. In bad weather, they stay in – bake, crafts, read books. And naps! Daily naps of 30 minutes to 3 hours, depending on the previous night’s sleep. Not a bad life, really.
But…it’s not like he’s retired. He’s a 12 year old boy with severe disabilities. The default modern parenting mode is to Program! Stimulate! Engage! Mark Progress! Build Self-Esteem! Be All You Can Be! This is standard for regular kids and double, triple for kids with disabilities. I lived in this mode for many years and wow, it really knocked me out. I no longer buy it – partly because none of it made a difference for Owen, and partly because it was just a bottomless pit. It was never, ever enough.
I know that all of that scrambling was futile, and yet I fend off uneasy feelings every day. I see him watching the same cartoons, going on the same walk, laughing at the same book, sleeping in the same position, at the same time – every day, day in and day out. Enough to make me want to scream.
It’s right about then I remember something and it usually stops the internal dialogue in its tracks: This is my reaction, not Owen’s. What does Owen actually want? Can I put myself in his shoes? I wonder: Would Owen rather be at a segregated school with a bunch of nurses? Would he rather be relentlessly assessed and scrutinized? Would he rather be reminded constantly that he doesn’t behave or engage in a socially acceptable way? Would he rather be challenged and pushed and judged and monitored and have his square peg self shoved into a round hole in ways that no regular kid would ever tolerate?
I can’t say for sure, but I would guess not. Owen’s fragile and broken body has been on a long, arduous journey and is constantly assaulted with medications, surgeries, lack of privacy, minor humiliations (when’s the last time you pooed your pants at the mall?), intense physical manhandling, and exhaustion from lack of sleep and muscle tension. Surely this is enough for a child to endure without throwing Expectations and Progress Tracking on top…?
Even if I had more time and money, I wouldn’t actually do more. It takes almost superhuman focus and commitment to just get through a day with Owen. Imagine what it takes to get through a day actually being Owen.
Disability or not, I think children need space to be without their parents breathing down their necks. Children with disabilities, for some reason(s), are expected to work harder than their peers. To catch up. To not fall behind. To fit in. To prove something. The pressure of this is hard for a parent (usually the mother) to keep up with – the messages from school, medical professionals and therapists can be persistent and persuasive. And weirdly seductive.
I’ve written before about projecting my own fears and sadness onto Owen and how that has impacted my own ability to advocate and care for him… but I contemplate now how that must have felt (or feel?) for him. To be so watched and scrutinized and measured and fussed over.
I suspect that being the subject of intense parental focus is more exhausting than even the physical challenges.