As parents, we tell untruths to our children, albeit mostly of the white lie variety. We tell our kids about Santa and the Tooth Fairy, and while they initially buy our stories, their belief slowly falls away over the years, so that when they do finally learn the truth, they’ve already mostly figured it out. Our lies were always fairly gentle, because we knew they wouldn’t last forever.
Beyond mythological figures, there’s the gradually disintegrating gentle lie we tell our children, the one that says that if they work hard enough or want it bad enough, they can do anything they want in the world. For kids with special needs, I suppose it’s not all that different. As parents, we overbelieve, and we sell that overbelief to our kids, and that’s not a bad thing, I don’t think. As they grow older, like Santa, they begin to see the flaws in our lie, and as they deconstruct it bit by bit, they begin to incrementally build a more pragmatic truth in its place. They sniff out the path that does await them, the one that is meaningful and possible. As their parents, we can help, but in the end, it’s not our quest. It’s theirs.
This past Saturday, Schuyler had a unique opportunity. We all met up for dinner with Glen Schallman, someone to whom I’d been interested in introducing Schuyler for a very long time. At fifty-five, Glen is the oldest known polymicrogyria survivor, and he has been a tireless advocate for PMG families all over the world. He’s brought a tremendous amount of public awareness to the condition of polymicrogyria, but more importantly for Schuyler, he lives a rich and independent life, the kind that she would very much like to live one day.
When we were making arrangements to meet, Glen suggested that Schuyler think of any questions she might have about his life with PMG. As we drove to pick up Glen for dinner, Schuyler earnestly wrote out five questions in her notebook, questions that only someone like Glen was in a position to answer. With her permission, I’m sharing them with you.
“What your little monster do to you?”
“Did you have problems with your monster in school?”
“Is it hurt if you have seizures?”
“Do you get scared because of your monster?”
“Do you think I can help people like us?”
Over dinner, Glen answered Schuyler’s questions with anecdotes and straight talk and stories of his own travels and the things he’s done in his life, experiences such as going to college and working with fire and police departments. She asked him if he thought she could travel one day all by herself. Of course, the answer was yes. And while she would receive that same answer from her parents and her therapists and teachers, it was an entirely different experience to hear it from a fellow PMG patient. The list of cities and countries he’d visited thrilled her (“I’ve always wanted to go to London!”), but it was the empirical evidence sitting before her that such things really are possible that truly changed something behind her eyes.
It was significant. It was an experience that will stay with her for a long time, in ways she might not even realize. Suddenly, the possibilities exist outside the realm of overbelief. She might not be able to do anything she wants with her life, but she can find her path, and it can be meaningful. The gentle lie gives way, to be replaced with a subtle but powerful truth.
Earlier that day, Schuyler was fitted for her marching band uniform. While I was waiting for her, I was able to speak to one of her band directors. He was extremely pleased with how she’d done during her first week of band camp. She was positive and worked hard, and she was already making connections with other band members. Even as we stood there, we heard kids greeting her. One of the drum majors of the band guided her through the uniform fitting process, and without and prompting from anyone, Schuyler pulled out her iPad to communicate things like her wardrobe sizes and the proper spelling of her name.
Everything was new to her, and everything was good. Her love of new experiences is one of the most central aspects of Schuyler’s character. Marching band and the extended family it builds around her is providing her with a community and a completely new experience.
When she was finally fitted for her uniform, Schuyler posed for a band photo, and then called me over excitedly to take a few of my own. I don’t think I’ve ever seen her happier, and I know that I’ve never been prouder of her.
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