Leadership and growth

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

Wait for it

I was thrust out of sleep last night for a few brief seconds into total free fall, just barely this side of consciousness, unable to recall where I was, who I was, why I was. For a moment I struggled to orient myself in space and time, until I heard myself say in a calm, competent voice: "Wait for it." A total sense of trust washed over me, a sense of excitement even (who might I be?) until finally I slammed back hard into the labels and perceptions of me.

7 Comments
September 2, 2015
More kitchen table talk
Photo by NeONBRAND
Disability / Improving healthcare / Leadership and growth / Special Needs Parenting

More kitchen table talk

So last night my 10-year-old child and I were sitting at the kitchen table filling out back-to-school paperwork, and they mentioned that they had had a dream in which their older brother didn't have Coffin-Lowry Syndrome. They proceeded to tell me of the zany antics that can only ensue in a dream world. I've had a couple of dreams too in which he is neurotypical and I have woken up feeling shaken.

12 Comments
August 20, 2014
Look Ma, no hands!
Photo by Flo Karr
Co-production and advocacy / Disability / Leadership and growth / Special Needs Parenting

Look Ma, no hands!

I have been riding with no hands when it comes to special needs parenting for some time now, ever since our huge move has had my attention elsewhere--getting a job, a place to live, a dog, converting recipes into metrics and Celsius. With so much to take in, I took my hands off the handlebars, trusting that the people around me would keep us safe (a correct hunch), that my mom detectors would sound even if 99% of me was caught up with figuring out the recycling rules of my new homeland, that I would take the handlebars again when it was time.

4 Comments
July 22, 2014
Engagement and Groundhog’s Day
Co-production and advocacy / Disability / Leadership and growth / Special Needs Parenting

Engagement and Groundhog’s Day

It's not Groundhog's Day here in Sweden but that won't stop our family from the annual viewing of the Bill Murray classic. Tonight we'll snuggle on the sofa while Bill awakens to Sonny and Cher for about, according to the DVD comments, 1000 years or so, reliving the same day until he gets it right. When I first saw the movie years ago, it was merely a funny, clever film with wry Murray wit and all that Andy MacDowell hair. Over the years it has become a story of engagement.

1 Comment
February 2, 2014
Wonder
Photo by Emily Morter
Co-production and advocacy / Disability / Improving healthcare / Leadership and growth / My toolkit / Special Needs Parenting

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
Mind the Gap
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
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