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Speaking for Herself

“There is no greater agony than bearing an untold story inside you.” — Maya Angelou

In ways both large and small, Schuyler is learning to advocate for her own self-interests.

A few weeks ago, she attended her first IEP meeting. It’s true that we’ve fallen out of love with Schuyler’s school district, and they’ve been particularly bad this year where her AAC usage has been concerned. I must admit, however, that the thing that I actually like about her school program is that beginning in 7th grade, unless there is a compelling reason against it (and I can imagine that for a lot of kids, there are some very good reasons), students are required to attend their own IEP meetings. Schuyler is in 6th grade; this was her practice run.

I wasn’t sure what to expect, but the meeting went well, at least her part of it. And it went well because Schuyler took ownership over a particular part of her future. Schuyler informed the committee that beginning next year, she wants to use an iPad instead of the dedicated speech device that she’s been using for the last seven years. The team member informed us that the school district wasn’t supporting iPads as AAC devices in the classrooms. We informed them that we didn’t really care. Schuyler made her choice, and we were supporting her, and that was pretty much that.

Furthermore, Schuyler announced that she had chosen to use the relatively new (and vaguely controversial) speech app Speak for Yourself as her mode of communication. She told the committee that she could use her iPad for class in different ways, not just as a speech device, and she pointed out that with the iPad, she looked just like everyone else.

Schuyler made a choice, and it was at least in part a choice based on her desire to “pass” as neurotypical as much as she can. I confess, one of the reasons for her choice, to look like everyone else, made me a little sad. “Passing” feels like a denial of who she really is, and it also feels like an endeavor which may ultimately be doomed to failure. But at Schuyler’s age, and given that her disability is largely invisible, it was a perfectly understandable choice. I am immensely proud of her, not just for making the decision but for expressing her reasons for doing so in an extremely articulate manner. She knows how she wants to communicate. She understands.

This is Schuyler now. She has fallen in love with communication, even as she struggles to find her own way to be heard. She’s writing short stories and reaching out to friends via email and text messaging. She is advocating for herself, and not with anger or a sense of separation from the grand rough world around her, one that she would be perfectly justified in distancing herself from. I watch Schuyler make her way in the world with positivity and courage, and it settles my oft-fretting fatherly heart. There’s a lot I don’t get right in this life, but I feel sometimes like I’ve gotten it right with Schuyler. I sometimes manage to feel like she’s going to be able to make it through the world, communicating on her terms and with real happiness.

Schuyler recently rediscovered her long lost digital camera, and she’s been taking a lot of photos of the world around her. It’s fascinating to watch that world through her lens. It reminds me that for Schuyler, communication is about the words, yes. But it is also about the touch, and the laughter, and the anger, and about what she captures wordlessly with her camera and her art.

Schuyler still has her secrets, and she still has more than most people. But she’s making her own choices about what to keep secret, and from whom, and most of all what to offer to the world around her, if we only have the sense to hear.

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