Ben Elwy, Medical Educator

The afternoon began with a plank-holding contest, followed by a heated game of chess. Then there was a bit of Minnesota trivia, a demonstration of Sprague band’s latest repertoire involving the snare drum and bells, and finally, Ben performed (death-defying, in his mother’s opinion) spins in his walker, using only his arms for support, in our kitchen. It was just another day of medical education from Ben’s perspective.

Ben demonstrating side plank in his basement therapy room

Ben demonstrating side plank in his basement therapy room

Our family hosts two, 3rd-year BU medical students for one afternoon during their pediatric rotation every semester. Operation House Call is a joint venture between The ARC of Massachusetts and BU School of Medicine and is designed to teach these future physicians how best to interact with patients with developmental disorders, and their families. The program has been operating since 1991, and by all accounts, is a huge success.

Although Ben does not have an intellectual disability, Schwartz-Jampel syndrome is considered a developmental disorder because of Ben’s physical limitations and the progressive nature of his condition. I wanted to become part of this program because of my professional interest in improving doctor-patient communication around disability and chronic health problems–what better place to start than with medical students? But I also think that Ben is the best teacher of all. He has shown his own doctors how effective he is at communicating his needs, his wants, and how he copes so well with his condition. It was time that he started doing this for future doctors as well.

The program is also family-centered. The students get to meet Lucy and Charlotte and ask them questions, they can see how all of us interact with Ben, and for an afternoon, they are our guests. I let Ben set the agenda–which is why the plank-holding and chess game became realities (Ben won both). We later realized that one of the students was from Minnesota, which was Ben’s assigned state to research in 4th grade. A Minnesota trivia game developed (the student won). The students do manage to ask some important questions. When Ben was asked what the most important thing was for a doctor to do, Ben said “Don’t be late!”. My advice–find something that you can connect with your patient about that does not involve his or her health. Ben’s favorite doctors have always inquired about his latest skiing, horseback riding, windsurfing escapade, or the more mundane, such as what book is Ben reading now, and how he did on his latest math test. I was really happy to see that these students did ask Ben some of these questions without my prompting. They also asked Ben how his friends at school treat him because of his challenges, and they asked me what kinds of advice I would have for parents looking for resources to modify their home.

While we were talking, a funny event happened. I was explaining a bit more about SJS, and Ben said, “you mean it’s not Shorts? I’ve been saying Shorts-Jampel my whole life!”. After lots of laughter, Ben started incorporating this theme into jokes, such as “get off my schwartz” (he was wearing shorts). This quick wit was not lost on these students.

After three hours, we said goodbye, which is strangely hard because we didn’t know these people before. But we’ve shared a lot and we can only hope that an afternoon with Ben and us sticks in their mind when they encounter a family with a child with a disability in a family medicine or ER situation, which is where these students hope to be one year from now. We’ll never know the impact of their time with Ben. Before we know it, we’ll be hosting another two Operation House Call students, and the cycle of Ben educating others about Shorts-Jampel will continue….


deidra witschorke posted on April 16, 2012 at 6:43 am

Not surprised by Ben’s wit, genetics. However, his perspective is teaching so many.

Andrea Ghose posted on April 16, 2012 at 11:09 am

Thanks so much for sharing the Shorts/Jampel syndrome mix-up with us! Tell my grandson, Ben, that I am impressed with his plank! I struggle sooo much trying to do it.
Love, Mom

Prateep Ghose posted on April 16, 2012 at 9:36 pm

I have seen a few of his “death defying” tricks on his walker and am never quite sure how Ben does them. I had to do planks at the yoga class last Thursday and it was tough! And the wit! So much Ben. Thanks for sharing. Love, Dad

Mary Katherine Quasarano posted on April 17, 2012 at 9:13 am

“Get off my schwartz…” What’s not to love about this little man? Thank you for opening your heart and home for the gift of real-life instruction.

gautier posted on June 11, 2012 at 1:02 pm

Hello,Ben and all the family,
I’m french.. from Brittany
My niece Océane, 11 yo, has the same disease ! she doesn’t walk anymore since august, but is still very active (swimming, powerchair football, etc;;) we try to have other treatment and advice, she has carbamazepine but a lot of pain!
Does Ben follow some treatment? what did he try?
thanks a lot

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