I’m taking some time during a quiet week at work for my EUPATI studies, a on-line training program for patient and family advocates about medicines research and development. This mornings’s lesson is pharmacovigilance — the complex science of preventing adverse effects toward medication. An important topic about which I know little, but from which we …
Tag Archives: disability
The tired tropes of special needs parenting
If you listen to or read pop culture reviews, you’ve probably stumbled upon a conversation about tropes, which are basically plot devices, themes or recurring character types. When disability gets represented in life and culture, plenty of tired tropes surface.
I came in last. And it was great.
I ran a 10 km road race this weekend, and I finished dead last. And it was great.
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.
Lessons from the teachers at the side of the highway
This weekend we took a trip to my husband’s family’s summer house. On the long trip there and back, we were saluted by beautiful lupines, a dramatic wildflower often found on the roadside in these parts. As the miles passed, the car seemed to shrink claustriphobically and the GPS estimated our journey home to be …
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Detoxing from crisis
We have been in crisis. And I am good at crisis. As a parent of a child with special needs, I’d have to say I feel comfortable there. After years of wishing to be done with the drama of crisis, recognizing a pang of nostalgia for it makes me stop and think.
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?”
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.
Special needs eclipse
I can’t even capture the intensity of the dark feeling now, but it was there, even though the circumstances seem trivial now. In one flash I saw myself forty years from now tying his shoe laces, wiping his mouth and his bottom, and my mind did a high-speed rewind through all of the thousands of tying and wiping moments I’d have between then and now. Zero to despair and rage in sixty seconds. It was hot and black and tight.
More breakfast table talk
About a year ago I wrote about a brutally and beautifully honest conversation that I had with my younger child about their brother’s developmental disability. A wise friend commented that our conversation would be one of many “periodic check-ins.” My friend was right. Not surprisingly, the last few weeks have created a need for more …