But let’s talk about something else. Let’s discuss what the world needs from Schuyler, and from kids like her, inasmuch as any kid with a disability is like any other.
Schuyler needs to attend school, and to spend as much of that time in classes with her neurotypical classmates, learning as much as she can on their level and finding her way through the bigger world around her. But the members of her school community need her there. Desperately.
Her teachers need to find the ways to reach her. Schuyler doesn’t follow some of the standard rules for kids with disabilities. She doesn’t always respond well to routine; many special educators will tell you that structure and order are the most important things to bring to kids with disabilities like hers. But Schuyler thrives on the new, and the teachers who reach her best are the ones who figure that out early on. Special education teachers who depend on experience to guide them are perhaps predisposed to failure. The lessons learned from individuals are of limited value. Previous experience provides a place to start, but the thing that makes teaching special education so challenging (and probably what makes it rewarding, too) is how every student requires an educational approach that is wholly unique. Schuyler is an unusually vivid example of the principle.
Schuyler needs to be around neurotypical classmates, she needs to develop strategies for moving through and functioning within neurotypical society. She needs to be able to do that on her own terms, with a recognition of the importance of her diversity. Learning to navigate those complicated relationships is going to be important, and her neurotypical classmates are the key to making that happen.
But there’s a dirty little secret of inclusion in public education. It is Schuyler’s neurotypical classmates who stand to benefit the most. Schuyler is the best friend anyone could hope to make. She’s funny and wild and most of all, she is fiercely loyal. But being Schuyler’s friend means learning to accommodate her differences. It means slowing down for her communication and allowing that her very different brain gives her a very different outlook on the human experience. There are deeply satisfying rewards to Schuyler’s friendship, and to friendship with her disabled peers. But those rewards aren’t just handed out. They must be earned, with patience and openness. Kids who never have those relationships in school grow up… incomplete, I’d say. Some of us are lucky enough to find the path one day, even if we never fully complete it. Kids who know Schuyler and her people from the beginning get there sooner. They are more complete than I could ever hope to be.
Schuyler needs family. She needs the care of those who aren’t supposed to turn away, no matter how challenging she gets or how many times they get it wrong.
But God, do we ever need her. Schuyler is a lifelong commitment, but she’s also like a warm star at the center of my solar system. When I get lost, I know where that center is. When I get disheartened, I know where to turn to for warmth. The complexity of parenting Schuyler is something I can’t even describe; in ways both large and small, the reality of being Schuyler’s father changes every day. It’s work with no job description; it’s building something large and complicated without a blueprint. It’s making it up as I go.
And yet without that work, I’d be a shadow of the person I am. Schuyler doesn’t exist to teach anyone a lesson or inspire us to be better people. That idea is frankly offensive. But those of us blessed to have someone like Schuyler in our lives would be foolish to miss the opportunity to grow into more complete human beings as a result of the authentic relationships we enter into with them. On their terms, by their rules, on the surface of their worlds.
We need Schuyler. We’re lucky to have her.