My child was born with severe, chronic, multiple disabilities. Our path was not so much about fixing his problems as it was about ‘maximizing his potential’ and ‘harnessing his natural abilities’. A modern and enlightened approach certainly, especially when compared to the mindset of previous decades. But let’s be real: even with this generous perspective, … Read more
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 … Read more
Within months after Owen was born, I was told he was deaf. Inside, I shrugged. “Oh well,” I thought. He almost hadn’t been born. He almost hadn’t lived. He almost didn’t come home from the hospital at all. Deafness didn’t seem like a real problem to me. People are born deaf all the time, aren’t … Read more
I am watching my boys growing and I am stunned at how quickly their childhoods are giving way to eventual adulthood. I get ahead of myself a bit perhaps – they’re only 9 and 11 – but they’re over half way to what we typically think of as ‘grown up’.
I have been thinking lately about my role as Owen’s primary caregiver and advocate and the process involved in making tough medical and care-related decisions.