Schuyler continues on her journey in the direction of eventual independent living, a goal that means a great deal to her, as it does to many young people with disabilities. It’s not the end-all goal of goals, I realize, certainly not for everyone. But for Schuyler, it remains the thing she both values and fears the most. Independent adulthood for Schuyler and young people like her is so complicated, but at the same time it’s such a basic and essential core concept for them.
The question has come up a few times. Is independence really a productive primary goal for kids with disabilities? Or is that quest another form of gentle oppression, yet one more way that we encourage kids who are significantly different to “pass”? And it’s a fair question, one that’s been on my mind a lot lately. The answer, as is so often the case with our special needs kids, lies somewhere in the realm of “a little of each” and “I am once again clueless”.
There’s something to be said for the idea that striving for independence involves a great deal of effort that could better be spent developing real world relationships and the kind of confidence and self-actualization that comes simply from being loved and respected. There are a number of preindustrial, nonwestern cultures that value children with differences precisely BECAUSE they are different, and put them on a course of a kind of community spiritualism. It’s a beautiful thought, and one that appeals to me a great deal. But in 2017 America, Schuyler’s future prospects as a shaman or a spiritual leader are probably untenable. I mean, you know, never say never. But still.
For Schuyler specifically, and for no doubt a great many of her peers, having the ability to pass for neurotypical in surface-level social interactions has probably given her an ambitious view of what her future could look like. If she can pass 75% of the time, that’s probably enough to convince her that she could take on a life of total independence. And that’s great, but it’s also a problem, because that other 25% is where heartbreak lives.
This is a topic I’ve written about often over the past couple of years, and it’s the thing that looms largest for Schuyler. As we begin to really dig into the question of guardianship, it feels like it’s all we talk about anymore. Honestly, applying for full guardianship when Schuyler turns eighteen feels like taking something away from her, a personal autonomy that should belong to every human being without objection. And yet, we know that in the short term, at least, it’s almost certainly going to be necessary.
I’ve said all this before, I know. And in the nine months or so leading up to her 18th birthday, you’ll hear it again, because it’s a dense forest without a clear path. Just dealing with the Social Security stuff is kind of eating our lunch a bit at the moment. It’s not a simple thing, to establish who’s going to be driving in that future, and how much control Schuyler will have over her own future.
She wants full control. And she deserves full control. But she’s not ready for it, and she understands this. So we’ll continue to drive, even as we know it shouldn’t always be this way.
Next week, at long last, Schuyler departs on her high school band’s spring trip, to the beach at Corpus Christi. This was always going to be a kind of test, I guess. We anguished about it for a long time before we signed her up. Not long after that, we received a call from her band director. We had a long, productive conversation about Schuyler’s polymicrogyria, the seriousness of which he was unaware until that moment. Watching his expression as we explained the worst case scenarios made me think of that summer day at Yale in 2003 when we received The News. I wonder if my face was that white back then.
To his credit, he immediately understood that four days in charge of Schuyler, with her needs and her stubbornness and that monster waiting to bite, was more responsibility than he felt comfortable with. But he also knew how important it is for Schuyler to be meaningfully involved with her friends and fellow students, and what this opportunity represents on her road to adulthood and the independence she is so keen to experience.
So he asked us to come along.
Schuyler will stay in a condo with her friends just like everyone else, and she’ll go to the beach with them and COOK with them (good lord) and have fun and screw up and have teen drama and get sunburned and grapple with her emotions and be a teenaged girl like everyone else, as much as that can be. She’ll live that 75%, and more.
For that other 25%, her parents will be just a few doors away. Absent until called for, ready to help when needed. A silent support team; a safety net hanging out of sight but deployed just the same. And it occurs to me that if this is what the rest of her life will look like, that’s not what anyone is hoping for, least of all Schuyler. But it’s not terrible. It’s not terrible at all.
(Particularly when it involves a trip to the beach.)
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