Wonder

I think sometimes we special needs parents are getting the wrong message. We're told that if we want to be effective, we should be the mama bear — fierce and protective. Or the victim, sad and pleading. The course leader's parable reminded me that I have other options, ones that actually might be more effective than anger or sadness.

8 Comments

December 9, 2013

Disability / Leadership and growth / Special Needs Parenting

Mind the Gap

On one side is you -- with your skills, your strengths, your resilience, your smarts, your capacity. On the other side is what life throws at you -- work, relationship needs, illness, a bad economy, whatever. The distance (actual or perceived) between what you can do and what life needs you to do is the Gap.

1 Comment

August 9, 2013

Co-production and advocacy / Disability / Improving healthcare / Special Needs Parenting

Care mapping as reflection and celebration

A guest post from Elizabeth, mom of two. "Creating my map helped me reconsider my own role in my son’s care plan. I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management. The exercise allowed me to step back and view Charlie’s system of care with new perspective. I found comfort in all these little circles, each representing a different system working to support my son and our family."

14 Comments

July 9, 2013

Photo by JR Korpa

Disability / Special Needs Parenting

Playing out on the street

The fire isn't just an anger. It's a sadness that my son is growing up in a world in which the main question it is asking him is "What is wrong with you?"

8 Comments

June 13, 2013

Co-production and advocacy / Disability / Leadership and growth / Special Needs Parenting

Fun houses and bumper cars

It struck me that being in the fun house was so like my experience of parenting a child with special needs, especially in a new country. Looking from the outside in, the recognizable elements are there: the kids, a school, a pediatrician, the toys, the hopes, the dreams. But take a step in and the floor starts to shake.

4 Comments

June 5, 2013

Photo by Silvestri Matteo

Disability / My toolkit / Special Needs Parenting

Empty space

As we prepared to sell our house and pack for our huge adventure and head out to Sweden next week, we've had to take decluttering to the proverbial "whole nother level" to say the least. A trifecta of motivators—a cheer-leading realtor, the understandably high cost of trans-Atlantic shipping and an earnest desire for a fresh start—has lit a fire under our bums and experience has been nothing short of catharsis.

4 Comments

April 23, 2013

Photo by Mateus Campos

Co-production and advocacy / Disability / Leadership and growth / My toolkit / Special Needs Parenting

Prostration

Several years ago I heard a radio interview with a devout Jewish woman who had a practice of laying prostrate—face down on the ground, arms outstretched. She said she did it to remind herself that she was not in control of every little thing. She was in God’s hands. In other faiths too, the act of laying oneself down is one of humility or surrender. While I might not share the beliefs from which this tradition springs, I do appreciate the value of acknowledging that I am not always in control.

4 Comments

April 4, 2013