Long Live the Lowerarchy

It’s back to school time in our home. Back to forgotten lunches, forgotten homework, forgotten bus passes, forgotten alarm clocks. Back to the routine.

Thursday was back-to-school night for Sam’s high school. Except for forgetting everything, she is off to a good start. She knows which of her teachers have pet cats, which have pet dogs, and which have neither, so she feels relatively comfortable. I’m not so keen on all of her teachers, but that is a story for another day.

The story for today is my conversation with the P.E. teacher (whom I like). Sam is enrolled in P.E. A.C.E.s this year. A.C.E.s is an acronym for something I’ve forgotten, but the program involves matching gen-ed students with students in the low-incidence (self-contained) classroom for either an art or a P.E. class. Students are partnered for the year, with the twin goals of integrating the students with significant special needs into the school community and providing the students from the gen-ed program with a broader perspective on the diversity of human experience. The program was initiated last year and seems to be working well for all involved. 

For the first couple of class periods Sam learned about mobility issues, medical conditions that impede a body’s ability to regulate temperature, and the purpose of many of the activities in which the class would engage. Then Sam met her partner for the year, a non-verbal girl with significant cognitive impairments. They walk in laps around the gym until the girl “needs some alone time,” as Sam explained, and Sam moves on to work with other pairs of students. Sam plans to create some picture cards to facilitate communication between them; she seems to be perfectly satisfied with the arrangement.

Thursday night I lingered when the bell blared for parents to move on to the next teacher. I wanted to note for the gym teacher how Sam straddles both worlds at school: she is a mentor in the A.C.E.s program and she has a mentor in the Best Buddies program. What a unique perspective! To be honest, I was feeling a bit smug. I’ve written before about the lowerarchy among parents of children with special needs and how unattractive it is, but I have to cop to playing into it. In this class, Sam was among the better-abled. She might need help to understand her partner’s limitations, but for once we would not be in the position of having to explain her limitations. That I took pleasure in this new, elevated status does not fill me with pride.

Karma catches up with me quickly though. The P.E. teacher agreed that Sam was managing well in the class. Whereas her arbitrary comments seem strange to peers in most of her classes, they blend right in when a dozen conversations are occurring simultaneously and not all are coherent. That was not the response I’d anticipated.

And the gym teacher continued. As part of his preparation to introduce the A.C.E.s program, he had visited a high school in a different district. There kids like Sam participate in A.C.E.s as freshmen. They benefit from having a mentor, playing non-competitive games and working on gross motor skills. In other words, Sam would have been back in the needs-help group, not in the gives-help group. What does a “deflated” emoji look like? I do not think my face betrayed my chagrin, but the teacher would not have been looking for it in any case. He would not imagine that I could recoil reflexively. After all, I am the parent who embraces my daughter exactly as she is.

After all, one would think. The fact is that Sam would have performed better in a class like the one he described. She spent her freshman year wandering away during the volleyball unit, wandering away during the basketball unit, wandering away during the badminton unit, wandering away during every set of instructions she could neither process due to the gym’s acoustics nor execute due to her lack of coordination. I learned as much from one of her classmates. The teacher quickly gave up on including her, and if I had been her teacher I would probably have taken an identically expedient approach. How much better if the class were structured so that she could enjoy participating and gain the friendship of an upperclassman to boot. How much better if I could simply thank the gym teacher for reflecting on ways to improve the experience of incoming students.

I am the parent who embraces my daughter exactly as she is. Just as I am the parent who never resents people for failing to respond to my unarticulated needs and who only serves her children whole grains. When will true enlightenment finally kick in?

For whatever reason, writing brings me closer to my goal of embracing exactly the daughter I have. It also reminds me, though, that the miles to go before I reach that goal are many.