Longform

The Scarlet Letter

Page 4 of 11

As quickly as it started, the tantrum ended, slowing like a dying storm, leaving Cheryl and Sophie back with the book. Cheryl's piece was lovely, very powerful. But as is almost always the case in a writing workshop, there were questions.

The process we follow in Mothers Who Write is simple. The author reads her work aloud, then sits quietly while the others discuss the piece as if she isn't there. Later, she has time to ask questions. One thing I noticed when Cheryl read was that she had not mentioned Sophie's diagnosis.

The conversation went something like this:

"So," I asked the class. "What do you think about the fact that in this piece, we don't know what's 'wrong' with Sophie? Don't you think it would help to know what her diagnosis is, so we have a better understanding, off the bat, of what Cheryl is dealing with?"

Cheryl interrupted. (The students often "cheat" and interrupt; it's hard to be quiet when someone is challenging your work!)

"I can't do that," she said.

"But why?" I asked, oblivious. "You've written about Madeline having Down syndrome; you didn't seem to have any sort of problem with that."

"But you can look at Madeline and tell what's wrong with her," Cheryl said. "You can't tell, by looking at Sophie. I need to protect her."

I kept pressing, still clueless, and finally, Cheryl blurted it out:

"Sophie's autistic."

Oh. DUH. How could I have missed it? There was my example, my anecdote. I e-mailed Cheryl after class, and she eagerly agreed to open her home and her family for storytelling purposes.

The Fishers live in far north Phoenix, in a small enclave not far from Anthem. Their home is neat and bright, with a big wooden kitchen table that appears to serve as the epicenter for most family activities. Cheryl is obviously very organized, and you'd have to be, to juggle the schedules of three active kids, all of whom have complicated school, therapy and medical schedules. With a clear-cut medical diagnosis and the accompanying mental retardation (although even with Down syndrome, someone still has to "test" your 3-year-old to determine she's mentally retarded), Madeline easily qualified for state services. Cheryl fought hard to get Zachary, who is now 3 and has a mild case of cerebral palsy, qualified for the public special-needs preschool.

She pushed the hardest for Sophie. And while Cheryl isn't so crazy about sharing Sophie's diagnosis of autism with the world, for fear it will brand her daughter (because to look at her, Cheryl's right, you'd never know), the Fishers actually sued their local school district to get Sophie labeled autistic, so she could get the right services.

"We went in there with medical reports — pardon the expression — out the ass," Cheryl says.

Cheryl rushes through her story, mindful that at any moment, the bus will deposit her kids at the front door. It's the last week of school, and Sophie's been out of sorts. Transitions are hard.

"This morning I went to hug her and she freaked out," Cheryl says.

The kids tumble off the bus and deposit their backpacks at the front door. It's obvious at first glance that Madeline has Down syndrome. Cheryl always has to laugh, when she talks about her younger daughter. One of the hallmarks of Down syndrome is a cheery disposition, but apparently no one sent that memo to Madeline, who her mother says can be downright mean. Cheryl laughs about it — she clearly adores Madeline, who does, in fact, walk in with a scowl on her face, eager to get to the kitchen table and her Wiggles coloring book. Neither Zachary nor Sophie appears "special" in any way, although it does become apparent, when she joins her sister at the table, that Sophie has some challenges. Like many autistic kids, she doesn't usually meet your eye. Like her mother said, she is out of sorts, inconsolable in a quiet way — wandering in and out of the house, from the backyard to the kitchen. Madeline finally cracks a big smile, pumping high on a swing just outside the arcadia door, instantly smudged from so many exits and entrances. The kids interact, but not much. During my visit, there are no big meltdowns, no temper tantrums. Just lunch, and several sippy cups.

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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.