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Insufficient Instrument

IMG_4846For a guy who’s not too smart, I think I do a reasonably good job of navigating the chaos around me. And yet, it is in respect to the most important part of my world where I think I know the least. Schuyler has always been, and remains today, the central mystery of my life. I think I made peace with that years ago, mostly because it is in the journey to understand her mystery that I’ve grown the most as a person, and found my closest approximation to lasting happiness. I’ve accepted that as lucky as I am to have Schuyler in my life, I’m mostly not going to get her.

It’s beginning to occur to me that I’m not the only one.

Back in 2010, roughly a thousand years ago, it seems, the diagnostician at Schuyler’s elementary school came right out and said, in these exact words, that she wanted to cognitively evaluate Schuyler because she felt that it would show her in a range consistent with “mental retardation”. Her words, remember.

We ultimately refused this evaluation, to the consternation of the school. We did so in part because given a choice between apologizing to Schuyler for refusing an important evaluation, or for allowing the school to attach a label of “mental retardation” to her for the rest of forever, there was only one of those apologies I felt like I’d be able to make while looking into her eyes.

But more to the point, we refused the test because the person who would be administering it was telling us exactly what she thought the test results would show. That kind of prophetic statement in a testing environment has a funny way of coming true. So, given the choice of handing over our daughter to an openly biased diagnostician with a taste for archaic nasty language, it wasn’t ultimately a hard choice at all.

This year, however, the cognitive evaluation reared its head like one of Schuyler’s beloved lake monsters, and this time, the stakes were higher. Schuyler is fourteen now. Adult services are only a few years away, and applications must be made now for ridiculously long waiting lists. High school class decisions might also benefit from this evaluation, we were told. And the language of the test was now in compliance with federal standards, so goodbye retardation, hello intellectual disability. A purely semantic and cosmetic change, perhaps, but a very important one.

So yeah. We let them administer the test. Tomorrow, we go in to discuss the results, but we got them back last Friday.

How did she do? Well, I’d be unlikely to share Schuyler’s results regardless, but the simple truth is that I don’t have any information. The results were inconclusive, the conclusions self-contradictory. This happened in large part because she simply shut down in a few key portions of the evaluation. (“Further evaluation was attempted in these areas but Schuyler would not participate as needed in order to obtain valid standard scores.”) The testing instrument did not appear to have any contingency in place for an uncooperative test subject, teenagers being known for their extremely cooperative nature, after all.

Beyond that, though, this jumped out:

“Schuyler’s communication difficulties may have impacted the standard scores she obtained on the reading activities. When reading from a word list, Schuyler had difficulty pronouncing words and, because of the standardization of the evaluation instrument, would not receive credit for a word that she would later demonstrate knowledge of on a different subtest.”

Schuyler, a mostly nonverbal subject with highly garbled words and very little in the way of hard consonants, had trouble pronouncing words. That’s surprising only if someone felt they needed a test to determine that. And because the instrument was standardized in a way that proved too inflexible to measure Schuyler, her score suffered.

It’s not all bad news, or even mostly so. Unlike past evaluations at Schuyler’s old school in Austin, her evaluator recognized the failure of the test and refused to make a final determination one way or the other based on the flawed data. The test can’t be administered again for a year, so this is how it’s going to stand for now, I guess. Schuyler’s team has already expressed frustration and embarrassment at how this turned out, and we haven’t even met yet. My worst fear, that this test would result in an inappropriate labeling of my very complicated daughter, has not come to pass.

I’d say that our faith in this cognitive evaluation has been shaken, but honestly, we didn’t have much to begin with. We agreed to it with reservations, and I’m not sure we’re likely to do that again next year, regardless of the services she might or might not qualify for in the future. In some ways, this feels like a gift. A do-over, perhaps, on a decision about which I felt a tremendous amount of anxiety.

I found a story on Disability Scoop from 2013 about a report that ranks states by their disability services. The top five states were Arizona, New Hampshire, Oregon, Vermont and California. The bottom five? Mississippi (ranked last for the seventh straight year), Arkansas, Texas, Illinois and Virginia.

Perhaps simply applying this insufficient instrument to the mysteries of Schuyler isn’t the key to her future success. But God, nomad parenting is hard. If we leap again, it really does need to be for the very last time.

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