The Scarlet Letter

Page 8 of 11

Sophie's adorable. She has long eyelashes, plump pink cheeks and, since she started walking a few months ago, a great strut. She also has almond-shaped eyes, a pug nose and straight hair — telltale signs of DS.

Even though I look at her and think it's obvious, apparently not everyone out there has been around a kid with Down syndrome, because I do run across people who don't realize she has it. Not long ago, the parents of a college friend of mine came to town, and I brought the girls to meet them at their hotel. My friend's parents had another friend along, and a few days after we'd all met, my college friend called to say that his mom's pal hadn't realized Sophie had Down syndrome. "She just wanted to know why Sophie had dark circles under her eyes," he reported.

I rode that wave for a few days, 'til I crashed in the checkout line at Safeway. The cashier looked at Sophie with a wide smile and announced, "I have a daughter with Downs! She's 22."

"Oh!" I said cheerfully. "How's she doing?"

The smile got fake. "Good!" came the obvious lie.

That's a typical encounter, I hate to report. So you can see why I sometimes do roam the aisles of Target, pretending that Sophie is "normal."

One of Sophie's therapists told me a story about a mother of a child with Down syndrome who really was in denial. Apparently, the mom had received the news when her daughter was born, and did seek out therapy from the state, but every time anyone would even mention the diagnosis, she'd pick up and leave. She moved all over the country. The story just doesn't really make sense, but somehow, I can see how it happened.

And I can see why Cheryl Fisher doesn't want her Sophie branded with a big A for autism.

The conundrum is that you can't get services — including therapy, some medical care or special education — without a label. In Arizona, until a child is 3, you don't need a diagnosis more formal than "speech delay." But once that kid hits 3, he or she must be found to have one of the four: mental retardation, autism, epilepsy or cerebral palsy.

No one I've talked to has ever seen a case of Down syndrome that was not accompanied by a slow enough intellect to qualify for services, but still, Sophie had to be tested, and of course I held out a little hope, in the back of my mind, that she'd be a medical miracle. She wasn't, although they put her IQ at 69, one point shy of the high end.

In the end, Sophie failed the intelligence test, which means she passed. She qualified for services.

With autism, there's such a range that a kid could be at the high-functioning end of the spectrum and still not qualify for services. The child has to be labeled as autistic, rather than with the milder PDD ("pervasive developmental disorder"). I've spoken with many parents who report that their doctor's private diagnosis was PDD, but that officially, it was autism — so the kid could get services. There is even a pediatrician in town nicknamed "Dr. Death," because reportedly, you can get that doctor to give you any sort of diagnosis you need.

With that sort of thing going on, it's so hard to get a handle on actual numbers. On one hand, there are parents so deep in denial they won't send a kid to preschool, for fear someone will point out that the child is odd. On the other hand, you have kids diagnosed in order to get something out of the state. And then there's that statistic about how half the kids diagnosed aren't labeled 'til kindergarten.

That statistic really worries me, because of something else going on in the system. In July 2005, changes to the Individuals with Disabilities Education Act (IDEA) took effect, changing the way special-education services are delivered.

Here's how the law works. I'll get to the change in a minute. When a kid enters public school, presumably kindergarten, the school has 45 days to screen new students and recommend special-ed evaluations. If an evaluation is deemed necessary, the parent must consent. If the parent does not consent, the school, under the auspices of the state Department of Education, has the ability to bring the parent to mediation or a hearing, to try to force the issue.

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Amy Silverman is a two-time winner of the Arizona Press Club’s Journalist of the Year award. Her work has appeared on the radio show This American Life and in the New York Times, the Washington Post, Lenny Letter, and Brain, Child. She’s the co-curator of the live reading series Bar Flies, and a commentator for KJZZ, the NPR affiliate in Phoenix. Silverman is the author of the book My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016). Follow her on Instagram (@amysilverman), Twitter (@amysilvermanaz), and at amy-silverman.com.