Monday, November 5, 2012

Seeding ideas at OACRS

I was at the annual conference of the Ontario Association of Children's Rehabilitation Services today.

It's always a treat to see parents from across the province who I only get a chance to catch up with once a year. It's amazing to be around people who understand what the "parenting a different kid" part of my life is like. I feel heard and understood.

Just a few quick observations.

My friend Amy Baskin, co-author of More Than A Mom, gave a great talk on taking care of yourself. She had us do the following quiz (questions were answered with "always, often, sometimes, rarely or never").

I'll give you my answers:

I get regular exercise (at least 30 minutes most days) -- sometimes

I get enough sleep (seven to eight hours) -- always

I eat a variety of nutritious foods -- often

I make medical appointments to look after MY OWN health (physical, eye checkup, dental) -- rarely to never

I see my friends on a regular basis -- sometimes to rarely

Amy referenced Anne Snowdon's research on friendships for teens and young adults with disabilities and how increased isolation as children grow is mirrored in their families.

"It's not just the child that has no or few peers," Anne said in a BLOOM interview. "It has a ripple effect on families. The families report high levels of stress over years, the caregiving demands are high, and it's hard to engage in their communities. I question whether after a certain length of time parents don’t just give up or don't have time or energy to maintain friendships."

Amy noted that social connections are most predictive of parent health over the long term -- over good food, exercise and sleep.

Yet families like ours are more likely to be isolated.

She encouraged parents to look at their lives as a water pitcher that needs to be kept filled in order to give our kids the best care.

Ways to keep replenished include eating healthy food (especially veggies and fish); exercising regularly; getting enough sleep; calling a friend; getting information on support circles; planning a night out; joining a club; attending a meeting; doing something that brings you joy; taking a soother (everyday activity that's calming like doing a crossword puzzle, knitting, reading, mindful breathing, sipping tea); writing in a gratitude journal; or delegating tasks to others in the family.

"Baby steps" is what Amy encourages.

"When worry and guilt are overwhelming it's a clear signal that you need to take a break, phone a friend or treat yourself," she says.

Alison Morse gave an excellent overview of IPRCs and IEPs and we learned she is now working with Easter Seals as a resource to Ontario parents on questions about special education (contact her at!). I pulled up the Easter Seals website tonight and noticed it has some excellent Ontario education resources listed.

The keynote was by journalist Ian Brown, author of The Boy in the Moon.

He talked about how we use futuristic science to save children with complex needs.

But then "old-fashioned moral laws kick in" in terms of who's responsible for their 24/7 care: "You had this kid, you better take care of him. Our social structure hasn't caught up to science."

I thought that was a telling comment on how our culture invests in high-tech intervention (with the goal of cure/normalcy), but not the complexity of long-term support that comes with chronic and multiple conditions.

Ian also said our lives were "too private a struggle," that we didn't have enough of a political voice, and compared the oppression of disabled people to that historically of women and blacks.


Sounds like a fascinating and very informative meeting. And I do love that Ian Brown --

I think that Ian Brown simply likes to shock people. I also think that we could have a stronger political voice if he chose to lead the charge. People like him in the public eye have great power and influence that unfortunately goes under utilized. On the other hand, great advice offered by Amy Baskin.

I'd love to see a follow up piece about families over the years who have spoken up and have made change politically, using their grassroots voices...that would serve as inspiration for the rest of us who struggle with systems.