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4schuyWhat’s the hardest part of being a special needs parent? That seems like kind of an obvious question, so I’m actually surprised I’ve never been asked it until recently. Or perhaps I have and I’m forgetting. I’m old, after all. I’m not in love with the question, to be honest, mostly because it feels like it focuses on the negative. There’s a lot that’s hard about what we do. There’s a lot that is rewarding and enriching and REAL about what we do, too, and while I’d take Schuyler’s polymicrogyria away from her in an instant, what I wouldn’t do is trade the parenting experience of being her father with anyone in the world. What’s the hardest part of being Schuyler’s dad? It’s nothing compared to the best parts.

But it’s a fair question, I guess, although kind of a deceiving one. I can’t tell you the hardest thing about being a special needs parent because my experience isn’t any more representative than anyone else’s. All families are unique; all special needs families even more so. But I can tell you the most challenging and heartbreaking part of being Schuyler’s father, and perhaps it will resonate a little with others, too.

The hardest part of being Schuyler’s father is facing her limits. Facing them? Sometimes even admitting they exist. There are times when even that’s bordering on too much.

I’ve written many times about my duty as Schuyler’s parent to be an overbeliever for her. I still think that’s true; indeed, I hold that to be an essential truth more now than ever before. I find that if I believe Schuyler’s capabilities reach beyond what we can see in the now, the rest is likely to follow. There was a time when we were told that Schuyler would never be able to write, or use a high end speech device, or even attend school, for that matter. Trying to accomplish more than that was considered overbelief by the physicians and educators and therapists in her life. It’s tempting to say that it’s a good thing we didn’t accept those limits at the time, but honestly, it wasn’t even a choice. When your parental instincts call bullshit on expert opinions, you go with your gut. If you’re right, boo-yah. If not, you regroup and you go on.

I’m finding that as Schuyler gets older, overbelief is becoming tempered with something akin to pragmatism, except with a tiny dose of guilt. Baby Schuyler was nothing but promise, a life waiting to be lived in its entirety. Schuyler at three was radically redefined with her diagnosis, her path uncertain. Five-year-old Schuyler had some answers with assistive technology, and her options and her possibilities simply exploded. The last thing we were willing to listen to was a list of the things she’d never be able to do. That list turned out to be largely wrong, and overbelief ultimately saved her.

Schuyler at sixteen presents some new challenges. She’s moving from the category of “forming” to “okay, here’s who she is, now what?”, a young adult positioning herself for whatever the rest of her life looks like. This is a rite of passage for anyone her age, but for Schuyler, it’s more complicated, and potentially more troubling, because there are simply things she can’t do, and some of them are things she might never be able to do. And that’s hard for her. It’s hard for me, too, and I assume for her mother as well. We all struggle with the boundaries, until now unexplored, at the edges of overbelief.

I’ve always advocated for parents as crucial members of their kids’ support teams in school and as part of their medical processes, but I’ve never let parents off the hook when it comes to being informed and seeing the reality of their children’s situation with open, clear eyes. Overbelief is not the same thing as denial.

At the same time, it feels wrong, a little, to be looking at Schuyler’s limitations with an eye towards identifying the ones that are likely to never go away. As she approaches her seventeenth birthday, she’s putting all that together herself, trying to determine what she’ll do with her life with the stuff she’s got. Schuyler knows her stuff is different, and she knows her stuff doesn’t easily fit in the world. For her, though, overbelief isn’t the issue. Schuyler doesn’t overbelieve so much as she keeps on going until she can’t.

The thing that’s different now, I guess, is that when she hits those obstacles, we all react differently. She’s at the point in her life when telling her she can do anything if she tries hard enough and be whatever she wants if she does the work, those stop being encouragements and become outright lies. When Schuyler hits her limitations now, as a young adult, we compensate, and we quietly take note, and we move on.

It’s hard to admit that she has limits. It’s hard and it’s heartbreaking, and it feels like a betrayal. But we still believe, and occasionally we still overbelieve, and we quietly begin to build the adult that she will soon become, one with limits, but one who is nevertheless extraordinary beyond imagining.

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  1. BW aka Barbara from Boston
    September 28, 2016 |
  2. September 28, 2016 |