An unpublished post from the past which I might have called ‘Being Owen’.

with Jamie and Sallyanne at Canada's Wonderland

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.

Stingray Bay, at the Toronto Zoo

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.

at the cottage

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.



  1. I love this post! To be. I am. A pretty good Easter message as well, for those of that heritage. Sometimes, as we lead Jessie out into the world (to the places she says she wants to go) she greets us with a kind of persistence/stubborness that makes others tell me I am patient. What I am quick to say is that we often forget that just getting through a morning … of changes and interactions and unknowns is very stressful for Jess. Her baseline stress is way above what we, any of us, often need to handle. So yah, I am sometimes patient, because she needs room to breath and adjust and just feel my suppport and love around her so she can go and do the things she wants to do. And I do think that her patience with me (for not getting it, for insisting on action, for not always being able to revel quite as she does in the joy of a really good Broadway song sung (over and over again) by a wonderful artist) is pure gift. Maybe someday I will really get it, to the core. Right now, its a learning and leaning into process still.

  2. Wow! What a treat to read that. And to see your thinking was already so evolved on this topic.

    It drives home so much of what you spoke about at Holland Bloorview.

    It is so hard to go against the grain of mainstream expectations of what we “should” be doing.

    This passage makes me cringe because the force to ‘fit in’ is so powerful:

    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.

    The pics of Owen at the cottage have always been some of my favourites. Thanks Jen Louise

  3. Thanks for your comments @Nancy and @Louise! You know those platitudes about how children with disabilities have so much to teach us? I’m reminded that our learning from our children is really about seeing and knowing ourselves…

    I was surprised to see this post sitting as a draft. I wonder why I didn’t publish it?

  4. Ryan and i read your posting this morning and we both understand how your feeling!Loved reading this posting this morning and loved the picture of Owen in Canada’s Wonderland!This is what he would of wanted….he looks so happy!!So nice to see!!!You are such a wonderful mother and never doubt that…Owen loved you so much!Ryan and Kim

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