Bushwacking: Four stages of becoming a family leader

Becoming a leader can feel intimidating. It requires new skills and courage at every step. It can be helpful to notice that leaders aren’t “born with it,” but are called to it. We can learn these skills. If we’re lucky, we have support and friendships for companionship along the way.

Answering questions together

Last weekend I travelled to Washington DC to help create a new model for government-funded medical research. As a parent of a child with special needs who spends most of my time thinking about children with special needs, this 150-person patient summit was one of the most diverse groups of patient stakeholders I’d ever been …

My Care Map, or the picture that tells a thousand words

About a year ago I was asked to talk to some primary care physicians about what it’s like to raise a child with complex health care needs. I thought long and hard about the right words, but eventually pulled out a bunch of colored markers, sat down at my dining room table, and drew this diagram …

Getting into the driver’s seat

In my 10 years as a parent of a child with significant medical and developmental challenges, I had significant “a-ha” change in my level of consciousness just a couple of years ago. So significant that it almost deserves a personal equivalent to the B.C. and A.D. of our Western calendar. That’s how big a deal …

Transition baby steps that lead to major milestones: It starts with YOU!

Recently my colleagues at the Federation for Children with Special Needs have been talking about the importance of preparing kids for medical transition to adulthood—how parents and caregivers need to deliberately teach kids the skills and build the confidence they will need to be engaged in their own health care as adults. When the topic …

10,000 (or so) Hours of Practice

As I approach my 10th year milestone of parenting a child with special needs, I remembered some research I read years ago about what makes someone an expert. Psychologist Anders Ericsson is well-known for his theory regarding expertise: it doesn’t take innate skill or genius. Just lots and lots of practice. In study after study …

No Pity, part 1

I bring along my son, who attends a special education school many miles away, when I pick up my daughter at her neighborhood school’s after-school program. Since he started attending the far-far-away school a year ago, the ties that bind him to our neighborhood are snapping, one by one. Granted, they were never strong, as …

Overtaken or working through?

Last week I wrote about how my professional and personal worlds are colliding now that I’ve started working for a project that advocates for kids (of all kinds, but especially with special needs) and their families in healthcare reform. Sitting down to my journal this morning, I flipped back through the past few weeks and …

Don’t Google

Back in the day, when my son’s medical symptoms and developmental delays started slowly revealing themselves one by one, I received the following advice from several of his doctors: Don’t start Googling. While this advice may have been given for job security or to prevent a lot of “needless” requests for referrals, I think it was …