Today is World Down Syndrome Day. Trisomy 21 (3-21, get it)? Ben’s DSP, Rachel, brought Ben into my school today, to bring to life what I had read to the class about Down syndrome. I shared the “About Us” page of this blog so kids could understand that Ben is a unique, talented individual. Should he be included? Yes, of course! But is he also sometimes the guy leading the way, the one you should follow, the one you might aspire to be? Yes.
At recess time, he dismissed a few classes, and then was joined by his (apparently?) adoring fans. Literally, half the fifth grade waited for him to come out. Someone asked him if he wanted to shoot baskets, he said yes, and a basketball was in his hands. As a crowd gathered to cheer, “Ben, Ben, Ben, Ben!” He lobbed the basketball up at the net again and again. Did he make the shots? About 15 percent of the time. Did that slow the cheering? It did not. When a shot would make it in the net, the crowd went wild. This went on for the whole recess!
I was actually kind of nervous about how the day would go. Would my class get it? Would they honor Ben’s dignity? (I’m not sure Ben actually knows that he has Down syndrome because we don’t know what purpose knowing this would serve. As it is, he just thinks he’s awesome. Let’s go with that.) The class asked him great questions, like what he likes to do, cook, and eat. He could have gone on about the virtues of Chicken Parm forever.
Earlier, before Ben came in today, kids were much more frank with their questions. Someone asked if he is married or has a girlfriend. Another asked if he is going to college or if he has a driver’s license. I explained that at this point we are all pretty happy with the path he’s on – living at home, volunteering, hanging with friends, and staying active. “But,” one girl asked, “Do you still have hope?” The question knocked me sideways. “Well,” I answered, when I had recovered my faculties, “If I am hoping for Ben’s happiness, then always. Yes. We hope. If we are hoping to push him down a path that is not for him, then, no.” Ben has friends with DS who are college bound, and others who are self-sufficient during the day. As recently as one hour ago, Ben tried executing a web of lies when I detected alleged Doritos dust where he had rubbed his hands on his pants after what must have been a clandestine feast. (He finally broke under cross-examination and said it was “Fritos. From my stash.”) This may not be the guy walking down the aisle, or driving you to the airport, but he’s the guy you want on your team. Every time. He’s the one shooting baskets wildly for a bunch of 5th graders cheering him on.
As for my colleagues and friends, I cannot thank you enough for creating an environment where everyone is welcomed, valued, and loved. I can’t even tell you what it meant to me, to see you all rocking your socks today for World Down Syndrome Day. Thank you for making today, and every day, a win for us!
Blessings to you, Liz and your family as you continue to guide and walk along side Ben as he navigates life.