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photoSchuyler has had a problem lately. In her life, both in her own actions and in those of the people around her, she has lost her balances. It’s not her fault. It happens.

For families like ours, the paths we walk aren’t ones that are all that well-travelled. We don’t always have that many examples of How Things Are for families of children with disabilities that are both subtle and conspicuous, and so we find ourselves searching for those paths, threading carefully, balanced between extreme possibilities.

At time, we can lose those balances. It is surprisingly easy to do. And that’s where Schuyler has been lately.

Schuyler has lost the balance between not taking school too seriously and not prioritizing or working as hard as she needs to, and as hard as she is capable of.

She’s lost the awkward balance between teenaged rebellion and her own special kind of dependence.

She’s also lost the balance in trying to be the complete, self-actualized and good-hearted person she knows she can be and trying very hard to become like some of the girls she encounters in her school environment, girls who are not exactly models for emulation, and who are unlikely to accept her regardless.

Schuyler’s father has lost the balance between being the kind of dad who lets his daughter make mistakes so that she can learn from them and the kind who is there to keep her from wandering too far from herself. He struggles with the balance between accepting her for the astonishing human being that she is, and fighting to tear down the obstacles that have been unfairly and arbitrarily placed in her path. Her father’s advocacy is balanced very precariously, as it always has been.

Her teachers haven’t communicated amongst each other very well this semester, and as a result, there’s a crucial balance that has been lost. There are those teachers who are so accommodating to Schuyler that they leave her unchallenged and insulted, and underbelieved in. And then there are those who haven’t taken the time to really explore both her capabilities and the unique challenges she represents as a learner, and set expectations for her that she may very well be doomed to fail.

Her assistive technology team has lost a very important and dangerous balance, between the capacity to try new things and think outside the parameters of their experience, and the tendency to treat Schuyler almost like an experiment, attempting new approaches and technologies with only a cursory understanding of how her current tech works, or even how their new experiments might pan out. They’ve lost the balance between their years-long commitment to her education and a kind of “let’s see what happens if we do this” randomness. She’s thirteen years old. We should have moved far beyond spitballing by now.

Schuyler is out of balance, but she’s doing okay. She’s generally happy, and when change presents itself, she’s still remarkably light on her feet. She’ll get her balances back, or at least she’ll restore them enough to continue. It’s what she does. It’s what we all do, every day and in every way.

Most of all, Schuyler steers with two hands against a zephyr wind, trying with all her might to sail in that sweet spot between dealing with the life she’s been given by a cold God or capricious Chance, and the person she could have been, if only. She knows she can’t be that person. But she desperately wants to be. For Schuyler, that may very well be the cruelest imbalance of all.

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