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A Hard, Correct Answer

driveAs we’ve moved through different stages of Schuyler’s life, we’ve had different concerns take precedence. When she was newly diagnosed at the age of three, it was just the basics of keeping her from aspirating when she ate, but that danger diminished as she grew older. Her communication was our primary concern for a long time, until she became proficient with her assistive speech technology and also found some improvement in her verbal speech. It was seizures for a while, and that concern stays with us, always. It’s the monster that kills kids like Schuyler, and we ignore it at our peril, and hers. But we manage it now, and it’s not the bugbear it once was. These days, our biggest concern seems to be facilitating Schuyler’s future of living independently, or at least as much so as she can, which will almost certainly be less than she deserves.

In that regard, she got bad news this week, although not unexpected, or even undeservedly so. Schuyler will not be allowed to try to get a driver’s license in the foreseeable future.

When we went in for her annual neurology appointment, we had some new concerns about seizures, because of course we did. Schuyler had a few incidents over the past few months, and they were different enough to get our undivided attention. She’s also had some unusual memory and retention problems. So we had questions for her neuro. And so did she.

“Can I drive?” she’s asked repeatedly, ever since she turned sixteen in December. The question hasn’t been loaded with urgency or petulance, largely, I suspect, because she hadn’t convinced herself that it’s a good idea. I’ve gently given my opinion but have always said that ultimately, it was up to her neurologist. Last week, he vetoed the idea.

He didn’t just say no, though, as I felt pretty sure he wouldn’t. He gently explained why to Schuyler. It wasn’t just her seizures, although he was concerned about that and told her that she would have to be seizure-free for at least three months before they could even consider it. He scheduled a new ambulatory EEG for the end of the month to monitor what he suspects may be new and changing seizure activity. That EEG, he told Schuyler, would help determine if she would be in the clear for driving.

Beyond that stipulation, he talked to her at length about his other concerns. He was worried about her reflexes and her ability to adjust quickly to changing situations without freezing up. I was glad he said it, because that was my worry as well. He told her about another patient whose motor issues and spacial awareness problems were similar to hers, and about the accident he had recently been in as a result. Schuyler’s neurologist explained it all to her, honestly but gently, and she nodded in agreement. She knows. I think she already knew going in. I think she just needed to hear it from someone else.

It’s hard to watch Schuyler hit obstacles in her journey to adulthood and self-sufficiency. I know with absolute certainty that she’s not even close to being ready to drive, and if you pressed me, I’d have to confess that I think she might never be. That may be one of those things that just doesn’t happen for her, and if so, that’s fine. It’s her reality, and it’s one that stands in the way for a lot of people with disabilities. Maybe most of them. It’s especially difficult for Schuyler because we live in North Texas, where public transportation could charitably be described as laughable. But she’s hardly alone.

When we talk about accessibility and inclusion, those aren’t just buzzwords. And they’re not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren’t any easy answers. Transportation may be the most straightforward, but it’s also pretty daunting. It’s easy to forget about the simple act of getting from here to there when we’re putting together the list of Things To Keep Us Up Late.

Having said all that, I must confess that when Schuyler’s neurologist gave his answer, the answer I was completely confident he would give, I nevertheless felt no small amount of relief. Schuyler’s independent future and her self-actualized life are of almost paramount importance. Almost. But before I’m her advocate or her overbeliever, I’m her father, and I’m supposed to keep her safe.

Worst case scenario, she learns how to use Uber. Things are going to be okay.

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9 Comments
  1. GB's Mom
    March 21, 2016 | Reply
  2. BW aka Barbara from Boston
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