Stages of grief and special needs parenting: Is acceptance all there is?

The stages of grief—the emotional progression following a loss made famous by Elizabeth Kubler-Ross—has often been applied to experience of special needs parenting. To those of you who aren’t raising kids with special needs this might seem really weird or just plain morose, ungrateful or unkind. I mean, nobody actually died, right? But although none …

Water, water everywhere

I’m getting used to this ambiguity. Often special needs parenting (and living in general, as you all insightfully point out) is about learning to thrive in that in-between feeling—being clear about what you want, having faith that you’ll get there, but not being attached to getting there. It’s like floating. I let go of the shore, on my back looking up at the sky, not getting too caught up going in any particular direction, occasionally paddling my feet to steer me in the generally right way, but not so much that I get a cramp. Just being. Just floating. Just appreciating being wet.

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 …

A gift from the messengers

Looking at one of the paintings, for one moment I am able get my arms around the fullness of my own parenting experience. The terror and the peace. The peace and the terror. It’s there, in oil on board, just right there in four square feet, inviting me to react, to feel it, to stay with it. So I do.

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 …

I get by with a little help from my friends

Researchers at Brigham Young University recently released findings that for people raising young children with disabilities, certain types of social relationships are typically more harmful and others more helpful for parents.

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 …