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Becoming Superfluous

image[2]Last week was Schuyler’s last in seventh grade. It wrapped up the way middle school semesters end for most kids, I suppose. Final exams with study material that seemed to materialize from nowhere, yearbooks to be signed (and hers was filled in a hurry, which was deeply satisfying), one last bus ride, the tossing out of the decimated folders and pencil nubbins, and a restless eye towards the apartment pool that has eluded her until now.

For Schuyler, summer is here, and with it come cheerleading camp and trips to visit her family and opportunities to see her friends and make new ones. There was a possibility that she might attend an AAC camp to mentor young users, but sadly I think that’s not going to happen. Still, she’s excited by the arrival of summer, and the very start of a future that she’s just beginning to take charge of.

Since her IEP (and its slightly contentious sequel), Schuyler has been using the speech software on her iPad more frequently. She’s using it spontaneously, which is a huge step forward, and she’s making an effort to utilize the icons rather than spelling everything out, which will speed her communication considerably. These are all extremely positive developments, both for the goals her support team has set for her and for the philosophical shift in her AAC use that we’ve all signed on for. Schuyler herself seems to be taking the lead, and that’s an incredibly encouraging development.

Schuyler is thirteen now, and in some ways she’s turning into a pretty typical teenager. But she’s also a child whose development has progressed unevenly, due to her communication problems and the developmental delays that none of us entirely understand, and a million other factors springing from a malformed but busy brain that impresses and mystifies her doctors and her teachers and her family alike. Sometimes behind her peers, and sometimes startlingly ahead, Schuyler is becoming the person she’s going to be as an adult. She’s making choices for herself, in the clothes she wears and the classes she takes and in the day-to-day things we all take for granted. And she communicates, on her own terms but increasingly using the powerful tools she has at hand, and in ways that are more effective, more efficient.

There was a time when I worried about what would happen to Schuyler if I wasn’t there. As she prepares for eighth grade and beyond, however, I can appreciate how many people are standing behind her, beyond her mother and me. I see the dedication of her school support team and the system that supports their work. I see her godparents, always ready to help her, and more importantly to love her unconditionally. But most of all, there’s Schuyler herself. She’s taking some big steps towards an independent, autonomous life. I couldn’t imagine it before, but I’m starting to see how it might look, and how much of that life she will determine for herself.

I know now that Schuyler can make it without me, and probably even thrive. I understand in a way that has perhaps eluded me before now that if something were to happen to me, if I were to be run down by a train or crushed by an errant piece of some uninspected airliner falling from the sky, Schuyler would be taken care of. More importantly, she would be on the road to taking care of herself. I feel strangely comforted by this. I feel a sense of relief, infused with a great deal of sadness but also with less fear than at any time in the last decade. If I were gone tomorrow, she would feel sadness, I’ll flatter myself to imagine. But her life wouldn’t be a desperate or diminished one, not after all the work she’s done towards self-advocacy and self-determination.

I’m becoming superfluous. And I suppose that’s how it should be.

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  1. Nicolep
    June 10, 2013 |
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  2. Susan
    June 10, 2013 |
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  3. Meredith
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  4. Sophiestrains
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  5. BW aka Barbara from Boston
    June 10, 2013 |