The High School Chapter, Page One

Schuyler started her summer band camp this morning, so I guess this is sort of the unofficial beginning of her high school years. Two weeks of 7am-to-noon rehearsals, a week of evening practices, and then ninth grade classes begin for real. I remember my own high school days, of marching band practice beginning in August, under a hot West Texas sun. It sounds miserable, and it was. It was also kind of glorious. In a weird way, I envy her, although it must be said, I also predict I’ll be back in bed by 7:30.

The band situation is tricky, because unlike her previous experience in middle school, Schuyler’s not getting a great deal of accommodation in her high school marching band situation, at least not yet. It’s probably good for her, I think, getting dropped into this particular pool to swim on her own. She had trouble making friends at percussion camp, but we’re hopeful that in the larger band group, she’ll do better. She’s determined to make it work, and I think it’s going to be okay. I hope it will. I’d like to see her get more individual guidance, but I also recognize that such an accommodation might not be possible now.

In three weeks, Schuyler begins high school classes for real, and that experience looks to be entirely different. Unlike past years, and with the exception of band, Schuyler won’t be attending any mainstream classes. My feelings about this are complicated. On one hand, I’m sure her accommodated classes will be plenty challenging for her, and honestly, I’m not convinced that she’d be ready for mainstream classes at the high school level. To be more precise, I’m not convinced she’s been adequately prepared for that level of inclusion, not for the past few years.

I know I’m supposed to be her overbeliever, and I think I am, as much as ever. I’m just not convinced that her teachers have gotten a very good handle on how to teach Schuyler, or really any of her nonverbal, AAC-using classmates. Several years ago, this school district abandoned the AAC-centric classes, the ones that brought us here in the first place. The philosophy of the assistive technology team changed. Instead of starting the kids off in an immersive AAC environment and then mainstreaming them gradually, the school decided that every campus would become AAC compliant. Any kid using assistive technology would be able to find a workable environment in any classroom on any campus, with everyone trained on their language systems and the philosophy behind AAC as a tool for inclusion. Ponies and princess tiaras upon request.

It hasn’t worked out that way, for a variety of reasons. The thing I learn as I talk to parents and therapists and even teachers from all over the country is that it rarely works out anywhere else, either. I’m beginning to doubt the ability of public education in this country to educate our special needs kids, and God, you don’t know how much it kills me to admit that out loud. There aren’t many overbelievers in our schools. A few years ago, I would have told you that parent advocates were increasingly being given the respect and authority that they deserve on their kids’ educational teams. I don’t know if things have changed, or perhaps I was just pollyanna. It doesn’t feel that way now.

Schuyler’s situation at her new school illustrates the conundrum that special needs parents face as we try to find the right path. We don’t want our kids to be singled out or treated differently, until of course we very much do. We want their experiences to be as close to typical as possible, but we understand that equitable doesn’t always mean equal. We want the supports in place, but we want them to be invisible.

We want the world to be fair, and kind. We know it’s not. We see the lives that typical kids lead, and we want our children to have a taste. But we know better.

And so Schuyler begins her high school years, in one situation where she is going to have to find her own way and in another where her path is segregated in a way that she may never escape. And most of all, as she begins her path to adulthood today, I cannot escape the fear that has been growing inside me like a malignancy, the one that whispers that she is going to be eaten alive by what’s ahead.