The Path to Self-Advocacy

Last week, I was privileged to participate in a broadcast of The Inclusive Class, with hosts Nicole Eredics and Terri Mauro, and fellow guest Amanda Morin, author of The Everything Parent’s Guide to Special Education. (You can listen to the episode “Teaching Students to Self-Advocate” if you’d like.) It was a fun discussion, and it gave me a great deal to think about.

The topic is one that becomes more central to my life as a parent the older Schuyler gets. She’s about to turn fifteen, and her need to advocate for herself is already taking center stage in her life. Talking to other parent advocates who are in the same place or have successfully navigated it made me feel a little less like we’re the only parents in the world going through this, or that we are screwing it up beyond repair.

There are a lot of challenges for our kids in transitioning from parent-led advocacy to self-advocacy, and for us as parents as well. What does that self-advocacy look like? For kids with communications challenges, how much can they depend on the world to correctly interpret and accommodate nontraditional communications? We’ve long recognized that even the most inscrutable behaviors constitute communication, but we also understand better than anyone that the world is not an inclusive place by nature. We want to trust that our kids’ unusual communications will be heard and respected, but we also know better. We want to insist that the world listen, but we understand that we need to give our kids the tools to be heard regardless.

A point that came up in the discussion that stayed with me was how our kids may see self-advocacy much differently than we do, and their interest in advocating for themselves might be limited, or at least subdued. It’s not always going to be about big policy questions at IEP meetings. It will usually come in the form of small moments in day to day life. Telling a teacher that a room is too loud for them, or asking that teacher to explain something another way. Trying to request a book at the library, or finding something in a store.

Schuyler is never going to be a confrontational self-advocate, I feel pretty certain of that. She shies away from conflict, even as she holds the grudges that she develops as a result of it. Her own sense of justice doesn’t always trump her desire to navigate her life with ease. She loves participating in marching band, for instance, even as she feels slighted by how she’s treated (and more to the point, sometimes dismissed) by her band teachers from time to time. She’s not interested in taking a stand, so she endures what she perceives as slights and focuses on the fun she’s having. Sometimes she’s a little student of Zen, in a way that I wish I could be but never am.

As much as I want Schuyler to be a fierce self-advocate, I also understand that her life is always going to be a series of compromises, and she’s going to pick her battles as best as she can. The best we can do for her is help her develop the tools she needs to speak up for herself and guide those around her in building a more inclusive environment. And then just hope that when the time comes, she’ll feel secure enough to do so.