Saturday, January 9, 2010
But sometimes, every now and then, we can see the monsters coming from a distance, and in those moments, we have the chance to stand ready.
At the beginning of the school year, we attended our daughter's IEP meeting at her school. This isn't the kind of anxiety-filled, "go straight to a bar afterwards" meeting that I would have once expected. When we moved to Schuyler's current school district four years ago, we did so precisely because the district had an assistive technology team, and specifically a class for kids like ours who use augmentative alternative communication devices to speak. We left behind a string of bad school experiences, of moments when our daughter could have fallen through the cracks in the system.
At the age of three and a half, after failing to develop even the most rudimentary elements of speech, Schuyler was diagnosed with a rare brain malformation called bilateral perisylvian polymicrogyria. The list of probable outcomes for Schuyler was daunting. In addition to her lack of speech, we could reasonably expect her to suffer from seizures (as about 90% of polymicrogyria patients experience), feeding difficulties, fine motor problems and some level of cognitive impairment.
Six and a half years later, Schuyler's outcome looks brighter. Her feeding difficulties are minimal, she has yet to experience any seizures, and thanks to the years she has spent with her speech device, her verbal speech, while still largely unintelligible, has improved dramatically. She attends a special classroom for speech device users for part of her day, and the rest of the time is spent in a regular fourth grade classroom with neurotypical kids her age. Schuyler's monster is still with her, but it's leashed now. Thanks to her hard work, her take-no-prisoners positive attitude and a dedicated support team, her future is one that may be uncertain but is nevertheless loaded with possibilities.
I refuse to let those possibilities be scuttled by a serious word, carelessly applied by professionals.
The word. The R word.
I have to confess, I have mixed feelings about advocating for gentle disability language. I never joined any of the "Spread the Word to End the Word" campaigns, and wasn't inclined to join any of the angry protests regarding the use of this word in the movie Tropic Thunder. I understand the outrage, but in the same way that I've rejected the "universal" acceptance of People First Language, it's not a cause that I can get behind entirely. In my opinion, shackling the free expression of ideas, even dumb ones, isn't the answer. It is, in fact, a step in the wrong direction. I understand that not everyone agrees with me, but that's kind of the point. Not everyone has to.
I do find the R word to be offensive, however. Not so much when it's used casually or ignorantly, but rather when it arrives in my daughter's world with full authority. Insensitive teenagers and edgy comedians don't have power, not in the long run. Professionals do, they have as much power as we grant them, which is plenty.
At Schuyler's IEP meeting a few months ago, the school's diagnostician stated her intention, assuming we approved, to give Schuyler an IQ test, one that would assign a numerical rating which would place her into a cognitive range. Against our better judgment, we'd allowed this test a few years ago, but the number that was assigned was high enough to dodge the word, and we went on with our lives.
The diagnostician informed us at this last meeting that based on Schuyler's problems with abstract thinking and her delays in her academic and verbal skills, Schuyler's score on a new test is almost certain to be lower.
Low enough to stick that word on my little girl.
The diagnostician wants this word to become part of Schuyler's lexicon, not because she's a bad person but rather because she wants Schuyler's record to reflect a certain reality, one determined by an easily administered and quantified test. The appropriateness of administering this test to a nonverbal subject remains a topic of disagreement in professional circles, and the "additional services" that such a score would make available for Schuyler are ones for which she already clearly qualifies.
Schuyler knows about the monster in her head. She knows about it, she accepts it and she fights the good fight every day, secure in the knowledge that she's different and even broken, but in her daily victories, she becomes more whole than any of us for whom the simple act of speaking is something we take for granted.
Schuyler's difficulties were handed to her, by Fate or Chance or an inexplicable God, and there's nothing any of us can do to change that. What I can do is resist adding another obstacle to her path. I can fight having a well-meaning professional attach this word, this fighting word of all fighting words, to Schuyler forever. It's not a word that can ever be taken away. It's a bell that can never be unrung.
It's a bad word when used casually by an ignorant public. It's a very bad word indeed when applied coldly and without consideration by a professional, particularly as a result of a test that probably isn't an appropriate measure, not when administered via assistive speech technology. And it's a bad word that I will fight, rationally or otherwise, from ever being associated publicly with my sweet and ferocious and clever little girl.
The diagnostician agreed to let us wait until now to make a decision, but we never needed this much time. We're not going to allow the evaluation.
My objectivity is clouded. I realize that. The best I can do as ask myself a question, and my answer convinces me that we're doing the right thing. The question is this: Which mistake can I live with? Which one would I be able to look Schuyler in the eye and apologize for making? My decision to skip a test that might have helped her somehow, out of my fear of stigmatization for her? Or a decision to to allow a well-intentioned stranger to hang that awful word around her neck?
It's a question with an easy answer, just this once.
Robert Rummel-Hudson is the father ten-year-old Schuyler and the author of Schuyler's Monster: A Father's Journey with His Wordless Daughter (St. Martin's Press, 2008). He is also a contributing essayist for My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids with Disabilities (PM Press, 2009). His work has appeared in Good Housekeeping and Wondertime. Robert's adventures with Schuyler can also be found at his blog, Fighting Monsters with Rubber Swords.