No Boundaries

Summer. Many people think beaches, day and sleep away camps, fun in the sun, freedom and independence. This is true for Lucy and Charlotte. But when I think of “Ben” and “summer” in the same sentence, I literally sweat. I think about the availability of beach wheelchairs, and camps that provide the right mix of fun, challenge and accessibility. Sensitivity to sun brought on by Ben’s medications makes me worry about sun exposure. Independence–there is nothing Ben would like more, but like it or not, he needs to have someone– a nurse, a family member or a personal care attendant–near him. Freedom is hard to get when you feel like you have a shadow. Ben has lots of shadows.

But when the third week of May arrived and Ben was back in school full-time, something we didn’t think would happen so soon after his spine surgery, I thought “OMG, Ben needs a summer plan!”. I thought he would have no choice but to be bored at home, recovering. So I quickly got to work with my planning.

Ben playing his newly created game, The Legend of the Mage

Ben loved the Museum of Science camps on video game and web design he attended last year, but I thought he was ready for a bigger challenge. I had researched iD (internalDrive) Tech Camps, based in California and hosted at university campuses throughout the country. They offer computer programming and video game design classes (among other things) for kids 7-18 years old, so I knew challenge would be inherent here. But would they be as welcoming and accessible as the MoS had been last summer?

Ben with the Awesome iD Tech Camp staff at Bentley University

At the end of Ben’s week at the Role Play Game Design with RPG Maker class at the iD Tech Camp held at Bentley University in Waltham, MA, I can wholeheartedly say “YES”! From Assistant Director Clymb’s call on Sunday to discuss logistics, learn about Schwartz-Jampel syndrome, plan for Ben’s arrival on Monday and his daily feedback to us; to Mega’s masterful and engaging teaching; and KingPin’s hearty welcomes every morning (these are screen names, of course), this experience was truly inspirational. Let me count the ways:

1. Ben actually talked about his camp days with us. Not with excited hand gestures like the women in the family, but he told us about his design plans. Cool.
2. He worried he wouldn’t finish his game in time. Ben always worries. But the fact he was worrying meant he was challenged. Also cool.
3. Ben was surrounded by goofy, techie, curious, people who are just like him. People who appreciate that he knows exactly what song is played at what level in which Zelda game.
4. These kindred spirits who surrounded Ben all week accepted him and became his friends. I witnessed it today. I didn’t sleep on Sunday night because I was worried about just this sort of thing not happening. More of these experiences will be good for both Ben and me.
5. We now have a new, Ben-designed, faux Zelda game called “The Legend of the Mage”–you’ll have to visit to play it!
6. And when Ben enters a new 7th grade class of middle school students in September, he can show them what he accomplished this summer. Video game language is as important as English for making new friends.

But the best thing was the diploma ceremony at the end of today’s session, where Mega said something unique about each of the 8 kids in his group (gotta love that low student-teacher ratio!). When it came to Ben, he told the group of parents and kids how clever Ben was, but Ben wouldn’t let Mega read the personal remarks Mega had written to Ben on the diploma. I only learned what was written when I privately read the diploma later. These words, and how they made me feel, will be fueling my internal drive for many moons to come. I hope they do the same for Ben.

Ben, you are an amazing person. You are incredibly charming, nice, funny, and caring. You are a lightning rod of happiness, and you brightened everyone’s week. You are a paragon camper, and I am so glad to have met you. I hope the rest of your summer is as spectacular as this week was for me.

iD Tech Camp, Ben will be back in Summer 2014!