Stories about: children with special health care needs

Special Olympics: How I become a ‘believer’ over this very special summer

By Marc Bernard Ackerman, DMD, MBA, FADPD, FACD, Director of Orthodontics, Boston Children’s Hospital

Marc Ackerman

Every September, I’m taken back to the fourth grade when Mrs. Henderson passed out black and white marble-colored journals to our class. She explained that over the course of the year we were going to keep a record of all our important fourth grade memories. Our first assignment was to answer the question: what was the most meaningful thing you did this summer?

All these years later, I can’t remember what I wrote, but I do remember Mrs. Henderson being underwhelmed by the responses she saw. One kid wrote about visiting a relative on a farm and riding a tractor. Another bragged about attending NASA space camp. Fun times for a child, but what I think Mrs. Henderson was hoping for was a recount by a student who had spent his time helping someone else. In keeping with that theme, Mrs. Henderson spent the year exposing us to can drives for the hungry, blanket drives for the homeless, spring clean-up at the school park and many other volunteer activities.

It was a concept that resonated with me, but throughout my professional education and career thus far, finding time to devote to altruistic activities has been hard. Any excess of time has been taken for professional development, and more recently, to starting a family of my own.

However, my outlook on how to allocate “free” time and how it related to helping others was forever changed this past summer when my good friend and colleague, Steve Perlman, DDS, invited me to participate in a train-the-trainer session for Healthy Athletes/Special Smiles held at the Special Olympics Southern California.

At first, I was slightly hesitant to accept the offer to become the Healthy Athletes/Special Smiles Clinical Director, because I doubted I’d ever have the time to devote so much it to that movement. Fortunately for me, Steve’s not the kind of guy who takes “no” for an answer.

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Lessons in communication–from my Twitter friend

A few weeks ago I sent out a tweet about something that I’d been noticing a lot in clinic that makes me sad. It’s remarkable, I said, how often patients don’t tell their doctors when they don’t understand, or when their instructions are impossible.

A tweet came back: It’s remarkable how often doctors don’t ask if we understand or if their instructions are possible.

The tweeter was the mom of a kid with special health care needs (actually, more than one kid). As we tweeted back and forth about her experiences, it hit me how crucial good communication is when there is medically complex stuff going on. So I asked her if she would help me write a blog post about the things parents like her wished doctors knew—or would ask.

Sure, she said. She talked with some of her friends who also have kids with special health care needs, and this is what they came up with:

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