School. Make-work, fake-fun, baby-sitting. Some nice moments, but probably not what you think. One such moment: he went out for recess with an older boy, and watched while his assigned ‘buddy’ shot a few hoops. Cool, I thought. Owen probably liked that.
I didn’t care for the fake artwork that came home, the fake social constructs, the fake cheeriness of the staff. The thinly-veiled agenda of keeping the staff busy and feeling useful.
I am amused by a concept I have read about lately. The proliferation of ‘fake work‘ in the corporate world. Fake because it creates the illusion of productivity when the activities actually don’t contribute to anything real or meaningful. Even metrics are a red-herring. Arbitrary and random measures that only serve to make us spin our wheels faster and justify our own existences. And our bosses’.
The therapy years were like that. Fake work. Endless stream of appointments filled with pep talks, encouraging observations, research reports, new directions, good intentions. Owen sitting there – bored, over-medicated, under-involved. I would leave with plans, papers, binders. Arrive home and add them to the pile. Then hire someone to look after Owen while I pored over them, prioritizing, logging, scheduling, making follow-up appointments.
My cupboard was full. My cupboard, meaning: the shelves in my bookcase, the slots in my accordion folder, our appointment book, my brain. And the goals! For Breathing-Swallowing-Sitting-Listening-Language Comprehension-Alternative and Augmentative Communication-Socializing-Sleeping-Bowel Movements. A binder for each one.
At every turn I was assigned a herculean task.
Random goals, from memory:
- Lift head
- Match colours
- Initiate activity
- Choose yes
- Choose no
- Choose yes or no
- Choose from 2 options
- Choose from 3 options
- Swallow without choking
- Sleep through the night
- Press the button at the right time
- Press the button to say something
- Press the button to turn on the lights, the fan, the remote control car, the blender…
“Come on Owen! You can do it!”
I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility. I would think to myself: Forget it, he will never do it, he hates this shit anyway, just stop. You could pick just one thing of the fifty and do only that for ten years and it will still never be done. It’s all too much, and never enough. Stop before you put all your energy there and leave nothing for yourself. Or Angus. Or Michael. Before it’s too late.
But the system has no room for this. We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…
I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences.
Are you wondering, Is she really saying this? How could she not want these things for her son?!
Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.