April can be a controversial month for disability advocacy, with some folks going blue for Autism Awareness and others speaking against it in favor of Autism Acceptance. We’re exactly two days into April and frankly, a lot of people have already expressed exhaustion with the whole discussion, which they see as just one more instance of the disability community eating itself.

My daughter isn’t autistic, so strictly speaking, I get to punt on this one. But what I can do is present my own April frustration, one that I think might inspire a more universal reaction. I sat down with Schuyler’s school calendar today, trying to schedule a family trip, and made a realization, the same one I have every year about this time.

For us, and most likely for you, April is State-Mandated Standardized Testing Month. Not sure what color ribbon we should display for this issue. Personally, I’d go with brown.

No Child Left Behind testing is a complicated subject for special needs parents. On one hand, for those of us trying to give our kids an inclusive experience, NCLB testing is a pain in the ass, but it’s everyone’s pain in the ass. I can’t imagine I’d be in love with the thought of Schuyler sitting in a room with her special ed friends doing something different while all the mainstream, neurotypical kids went through the crucible of testing. (Here in the state of Texas, it’s the brand new State of Texas Assessments of Academic Readiness, or STAAR test, pronounces “star”, except everyone I know derisively says it like a pirate.) Of course, part of me thinks, “Hey, let everyone whose futures depend on this stupid test take it, and I’ll take Schuyler on a trip since the test doesn’t count for her anyway.”

Because that’s the thing. For kids like Schuyler who take a modified version of the test, the rules of advancement don’t necessarily apply. Schuyler’s future grade advancement will be determined by her special ed support team at her next IEP meeting. It will be their recommendation, not the results of the STAAR test, that will determine whether or not she advances to eighth grade.

(Schuyler maintains a B average in her classes, a mix of special education and mainstream courses, so I don’t anticipate any trouble there. Knock on wood.)

When Schuyler sits down to take the reading portion of STAAR today and tomorrow, she’ll be doing so in a modified version of the test. In her case, the modifications will be to a test with the same information as the regular test, but with changes like larger font sizes, fewer answer choices, simpler sentence structures, etc. There’s another more profoundly modified exam for students with significant cognitive disabilities, and all sorts of specific modifications to address specific physical and neurological impairments. But the information on the tests is the same, and federal guidelines require that all students take it, including special education students, at their grade level rather than at whatever ability levels are identified by their team.

It’s this point, the requirement that the test be administered at grade level, that I think is crucial. It’s here that I think the failure trap is set, and needlessly so.

I have mixed feelings about these tests. On one hand, I suppose the concept of inclusion probably includes wasting everyone’s time equally. But it feels like an especially gross way to treat kids with disabilities. Thanks to federal law, for which I am always truly and unequivocally grateful, disabled students like Schuyler are entitled to an Individualized Education Plan (IEP) developed by the student’s entire support team. This team has always included us as parents. More importantly, now that she’s thirteen, Schuyler herself is required to attend. This is exactly how it should be. But at the same time the government tells us that kids like Schuyler deserve an education specifically adjusted to accommodate their disability, it also says that one single test, albeit with modifications, is appropriate to measure the academic achievement of every student? Even for kids without disabilities, this has always struck me as a dubious contention.

Kids like Schuyler are traveling at different speeds, but they’re mostly faceplanting into No Child Left Behind like a brick wall. And it’s leaving a mark.

When I talk to other parents of kids with disabilities, this is a topic that touches them all, US all, on a deeply raw level. Despite accommodations, our kids don’t generally do well at all on these tests, and they find themselves deeply demoralized by the results. It’s an area in which they cannot help but feel a direct comparison between their own abilities and those of their neurotypical classmates. In subjecting our kids to these tests, we add to the already daunting obstacles they climb every day, obstacles we can barely even comprehend. We don’t generally learn much of anything about students with disabilities who take these tests. We learn plenty about the system, but nothing helpful. Nothing we didn’t already know.

No one can predict what Schuyler will achieve one day. But if there’s one thing everyone on her support team can agree on, it’s that she’ll get there at her own pace, and that pace is significantly slower than her classmates. She’s got a lot to deal with, more than her neurotypical classmates. Her slog is swampier than theirs, her victories more hard won. Demoralizing her and kids just like her with a useless test, one that they are forced to take at grade level, merely confirms what they already know, and more importantly, what they already feel. Schuyler’s pace is her own, and if it means she completes high school when she’s twenty-one rather than eighteen, or whatever place she finds herself when the time comes for her to move on, then that’s what’ll happen. Because that’s the hand she’s been dealt, and believe me, there are much worse hands to be played.

Schuyler works hard, harder than any kid I know, but for the month of April, that work will be largely useless, in our opinion. There are a lot of people making choices in her educational life, from her parents to her teachers and therapists to government bureaucrats who don’t understand the challenges of kids like Schuyler and don’t particularly seem inclined to bother trying.

But her monster sits at that table, too. And he gets a vote.

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Thanks again to Mabel’s Labels for their sponsorship last month!

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