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 …

Secret hand gestures

It’s in moments like this that I wish there was a secret hand gesture
, a high-five or a thumbs up, that would let that other person know: “Hey, I’ve been there. I see you. You’re doing a great job. If you need a hand, let me know.”

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 …

The Birthday Girl Gives Everyone Else a Gift

This Saturday my son and daughter went to a birthday party of a very close friend, let’s call her the Birthday Girl, who recently moved to another town. Though the Birthday Girl’s older sister has been acutely aware of my son’s developmental differences for the past few years – I wrote about out a wonderful …

My six word memoir(s)

My airwaves have been silent lately. Some new professional opportunities have offered me the chance to share my perspective as a special needs parent to such a remarkable degree that I seem to have little time and few words left for blogging. But an opportunity came up last week to create and share my six-word …

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 …

A few minutes in the hospital lobby

I arrived a little earlier than expected at our local pediatric hospital last Friday. I have spent plenty of hours there with my son, both inpatient and outpatient, or visiting friends whose children are also patients, providing plenty of opportunities for a lot of suffering. On this day though, I’m here in a more neutral …

A new perspective on sinking and swimming

Other people’s dreams can be so tedious, I know, but it can’t be helped. I’m at a support group with other parents of special needs kids; I can’t see the other participants (am invisible to them, too) because the room is all obstructed views. I ask if we can re-arrange the seats, but am told that …

My gut

In 10th grade business class, my teacher Mrs. Goldstein taught our class a model that promised to make us more successful in life. When faced with a difficult decision of whether or not to do something, she counciled us to execute the following strategy: At the top of a sheet of paper (this was the …