Hello, hello

I thought even more about the fact that he said hello at all, and how that made me feel. Saying hello can seem like a token transaction, but really it’s a way to let others know that we see them. My shoulders loosened. I was reminded of the importance of kindness.

Care mapping as reflection and celebration

A guest post from Elizabeth, mom of two. “Creating my map helped me reconsider my own role in my son’s care plan.  I have come to see myself as the central facilitator between many separate agencies. With this awareness, I’ve been able to better communicate with my son’s practitioners and more actively embrace the myriad tasks of care management.  The exercise allowed me to step back and view Charlie’s system of care with new perspective.  I found comfort in all these little circles, each representing a different system working to support my son and our family.”

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 …