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Anything You Want to Be

schuylerinblackAs I’ve written before, I’m a big proponent of overbelieving. I’ve never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that “you can do whatever you want in life, be anything you want to be, as long as you’re willing to work for it” is a gentle lie told to very young children. It’s one that we as parents understand will be shaped and molded as our kids get older. When you’re five, it’s entirely feasible that you could be a cowgirl or an astronaut one day. When you’re a teenager, that conversation becomes a lot more real world.

This is especially true of kids with disabilities. Early on, we begin to gently guide our kids’ dreams as best as we can, balancing our overbelief with a dose of pragmatism. It’s not so much a matter of limiting our kids’ choices, but rather identifying pathways that are more likely to lead to success. As parents, we want those paths to be as unrestricted as possible, and it can feel like the greatest feeling in the world when a teacher steps up and overbelieves right along with us.

So as we sat down at Schuyler’s annual IEP meeting and began to go through her transitional material for post-school life, it was with decidedly mixed feelings that we absorbed the information from her special education team leader that not only had Schuyler expressed an interest in joining the Navy after high school, but that her team had planned out the classes she would need to take over the next two years in order to make that goal a reality. ROTC, law enforcement principles, the works. There it was, projected on the wall, right there in her IEP.

We had to confess, this was totally from out of left field to us. We’d never heard Schuyler express a desire to enlist in the Navy. But apparently when they interviewed her for transition, she said she wished to join the Navy, like her uncle, and they ran with that.

Okay. So. This was the part of the meeting where we stepped very carefully. After all these years of practically begging her teachers to believe in her and challenge her, it would probably be counterproductive to just say, “Oh, well, that’s bullshit right there.” And really, I didn’t want to arrive at that conclusion without some serious thought. My gut reaction was that it’s not a very realistic goal for Schuyler. But was that actually true?

Sadly, about two minutes with Dr. Google answered that question pretty quickly. Long before she would even be able to take the Armed Services Vocational Aptitude Battery (ASVAB), a three hour test covering a wide range of topics, Schuyler would be rejected for a number of neurological conditions. These include (but are not limited to) “congenital [neurological] malformations, if associated with neurological manifestations”, “permanent motor or sensory deficits”, “impairment of intellectual function”, and of course “epilepsy, beyond the age of 5 unless the applicant has been free of seizures for a period of 5 years while taking no medication for seizure control, and has a normal electroencephalogram”.

So that’s a bummer for Schuyler. But here’s the thing. I went and looked all that up again just now so I could include the details, but the basic “yeah, that’s not going to happen” answer was one I got while looking on my phone as Julie was driving us home. We were still within sight of the school when I determined that Schuyler’s naval dream was not to be. A great deal of research wasn’t required.

I hate to be Schuyler’s dream killer, and I certainly don’t love the idea of her teachers telling her that her goals are untenable. If this was simply unlikely, that would be one thing. Unlikely is totally on the table. Schuyler’s very quality of life was entirely unlikely, after all. She eats unlikely for breakfast.

But this isn’t unlikely. Schuyler’s congenital neurological malformations aren’t going away. Her intellectual impairment and her fine motor issues aren’t going to vanish. And while I’m confident that her seizures will remain under control and may one day go away entirely, the fact as it stands right now is that they remain a thing held at bay with medication, and only mostly at that. She’s not even cleared to get a drivers license yet.

We sat through the meeting with mostly open minds (or so I like to believe), and while this was the weirdest IEP meeting in a long time (instead of landing in Holland, we touched down on Mars), the rest passed without incident. To their credit, not everyone on her team seemed entirely on board with the military plan, and we discussed her Plan B options as well, just in case Schuyler needed an alternate plan to a life of adventure on the high seas. Graphic design, perhaps. Even a cowgirl if she’s still interested, as long as she doesn’t mind getting the blues.

Having processed this for a few days, however, I find myself a little discouraged. Planning for the future of a kid with a disability is tricky, and overbelief is a controlled substance at best. I’m not entirely certain where this idea of the Navy came from; Schuyler never mentioned it to either of us, although it’s true that my brother served on a submarine years ago. (Sorry, Schuyler. No women on subs, at least not yet.) In addition to her enthusiasm for doing something where she’d get to wear a uniform, we were informed that Schuyler told her team that she wants to help people (a familiar refrain), and that she wants to “stop bad people”.

Which is great. I’m very proud of her for that. But the professionals who are tasked with helping to map out her future need to understand that Schuyler is still a very fanciful young lady. When she talks about stopping bad people, she’s as likely as not imagining becoming a Jedi. Even without all the immovable barriers to enlistment, I can’t imagine military life would be a good fit for Schuyler. I could be very wrong about that, but here’s the thing: we’ll never ever know.

I’m not sure what my point is today. As soon as I got permission from Schuyler to write about this, I started trying to organize my thoughts on the matter. But four days later, I’m still not entirely sure how to feel. I’m grateful that her team believes in her and is hesitant to close the doors to the possibilities that she imagines. I really, truly am. That’s not a small thing.

But Schuyler has five semesters of high school left. Five. Less than that, really. She needs overbelievers as much as ever. You really can be anything you want, I guess. But I think the dirty little secret is this: you have to carefully choose what you want in the first place.

That’s a hard lesson for any teenager to process. For a kid like Schuyler, she needs a lot of very serious help. For that, she needs serious people with serious plans.

We don’t have a lot of time.

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