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The World in a Room

photoAs Schuyler approaches the big changes that are afoot for her in the coming weeks, we’ve recently set her on a task, that of cleaning out her bedroom. The goal is to get her down to the essentials, for one thing; if we were to have to pack up Schuyler’s room tomorrow, it would be on the scale of an archeological dig. More than that, though, Schuyler’s room should reflect the daily life of the teenager she is becoming, not so much a museum of the child she has been.

As with all things Schuyler, it’s tricky. She doesn’t present like a neurotypical child, at any particular age level. I’m always suspicious when a news story about someone with an intellectual disability mentions their “mental age”, as if development is a universal thing, like a dial that can be set at a specific speed. That’s never been the case with Schuyler, and I suspect it’s probably not the reality for most kids with developmental disabilities. Schuyler’s monster fiddles with her brain in enigmatic ways, affecting some areas with a light touch, others with a heavy hand. She’s a little girl; she’s a young woman. She sees some aspects of the world through a developmental fog; other parts, with crystal clarity, and with a life experience that is deeper and more challenging than I can understand, even at my age.

To look at Schuyler’s room is to get a glimpse at the threads and pieces that make up the tapestry of her interests. Toys from her youth still sit out, and still get played with. Her walls are covered with posters from monster movies and pop art and the pieces that others have been generous enough to create for her. There are the trophies from Miracle League, and medals from her percussion contests. There are pink Christmas lights, and Halloween bats. Her ceiling is covered with glowing stars, and a model of the Solar System hangs in the corner, planets that we sometimes shoot with Nerf darts while sitting on her bed. Books sit on shelves and in piles, children’s picture books and Manga side by side. You’ll find countless stuffed animals and dolls, alongside percussion equipment and art supplies.

The hard part comes in trying to help Schuyler decide what to give away and what to keep. We stay out of her way, even though honestly, she’s not making a lot of progress. But it’s up to her to decide, not so much what’s appropriate to her age, because her age gives an incomplete picture of who she is and what’s appropriate for her. No, for Schuyler, it’s a process of deciding what is relevant to her now, to her life at this stage. When she starts high school in the coming weeks, I suspect her choices might change.

The older she grows, the more defined Schuyler’s world becomes. It ways both profound and mundane, she shapes it around her.

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