Read An Uncomplicated Life Online
Authors: Paul Daugherty
This was the sort of person we needed to help us in the building of a better Jillian.
By the time Jillian and Marfa began what would be a decade-long collaboration, Jillian had been speaking for at least a year. It didn’t matter that neither Kerry nor I knew what she was saying.
Listening to Jillian was like stumbling into a lost Amazonian tribe. She was multisyllabic and entirely conversational. Jillian had a lot going on, even if it was foreign to everyone but her. We worried at first that our daughter’s disability would deter her willingness to speak. Soon enough, we wondered when she would stop.
At this age, kids begin forming semblances of words. Kelly said “Day-day” when he talked about our dog at the time, Deja-Vu. He said “moash” when he wanted milk. We understood him, occasionally. For Jillian, the “ah-oohs” had given way to more sophisticated pronouncements. They were gibberish, but they were Jillian’s unique brand of gibberish, complete with pauses, inflections and exclamation points. Jillian’s need to be heard was obvious. Her ability to mix pitches and to vary tones suggested a feeling behind what she was saying. She didn’t know the word “happy.” But she knew what being happy was.
We would stand in the upstairs hallway, ears pressed to Jillian’s bedroom door, eavesdropping on Jillian’s filibusters, which were her purest form of expression. Her tones, inflections and occasional laughs and cries showed she was capable of creating her own parallel world, complete with all the standard emotions. They indicated intelligence because smarts are required to invent the friends she employed as partners in the dialog.
And yet, as I listened to my two-year-old, I wondered what transpired in the wide-open spaces between Jillian’s brain and her lips. Where did her abundant thoughts go? Did they emerge lucid from her brain’s transmitters, pinball around and disappear? Was there some great holding tank for all the thoughts she couldn’t articulate?
I pictured a dead-letter office. A lost and found, for the permanently lost.
Jillian had no such worries. She just liked to talk.
Whenever we made the five-hour car trek to Kerry’s parents in Pittsburgh, we discovered we could keep Jillian happy simply by giving her a pair of socks. She would pull them on
like mittens, then manipulate them with her hands, like puppets. And she would converse with them for five hours straight. Jillian was fluent in her Language For One. Occasionally, she wouldn’t even need socks. Popsicle sticks, one in each hand, were suitable for a lengthy chat.
“How can you stand this?” Kerry’s sister, Janis, asked at one point.
“Stand what?” Kerry answered.
When Kerry went to Target or Walmart, she’d plop Jillian in a shopping cart, then find her a dress on a hanger. Jillian would pretend the dress was a friend. She and the dress/friend would converse while Kerry shopped in peace.
In the early years of
Saturday Night Live,
the late Gilda Radner performed a solo skit in which she played a teenaged girl, on the four-poster bed in her room, acting out lavish adventures in private. Radner called it “The Judy Miller Show.” That was Jillian. She starred in her own, one-woman show, way off Broadway. The Jillian Daugherty Show. These are the times we’d listen in the hall.
As she got older and the words started happening, Jillian would consult with herself: “What do now?” She’d argue with herself: “No way can do that!” She’d console herself: “It OK, Jiwwian.”
Even as I marveled at the sounds behind the door, I was sad they weren’t finding a home. There was no audience. This most audacious child, who fought to be born and screamed to stay alive: Would she ever have a voice?
We make admirable accommodation for the physically disabled. They park in the close-up spaces. Building codes must include them. Science enables them. A physically disabled
president lifted us from a Depression and guided us through a world war. A sprinter without legs competes in the Olympics, on appendages of carbon fiber. The physically impaired negotiate our society with few stigmas attached.
What of those whose speech is limited? Who are we if we can’t communicate? How does Jillian embrace the future if she can’t articulate it? Without the sky of language, the words can’t fly. Listening at her door, we could tell that so much thinking was occurring inside Jillian’s head. Would enough of it emerge, recognizable?
Jillian was faithful about attending all of her therapies—physical, occupational and speech—but we knew the speech mattered most. It was important for Jillian to hold a fork or possibly ride a bike, but being able to communicate was vital. It was everything. She met with Martha for an hour each week. Jillian’s strength came as much from her character as her intelligence. Want-to overcame IQ. She came ready to learn. She tried anything.
Jillian also wanted to be in control. Martha would offer her choices of books or games. “Clearly, she wanted to be driving my behavior,” Martha said.
“No dat,” Jillian might say, when faced with a choice of a game or book. “Dis one.”
Jillian was slow to learn nuances. She knew what a cat was; she also knew a kitten was a baby cat. She could see their differences. Emotions are more subtle. “What’s the difference between glad and happy and joyous?” Martha would ask.
“I’m happy,” Jillian would say.
“Are you glad?” Martha would respond.
“No.”
“Can you be happy without being glad?”
“No.”
“So, you’re happy and glad,” Martha asked.
“Yes, I am.”
“I am joyous when I open my mail,” Martha said. “Does that make sense?”
“Yes.”
“No, it doesn’t,” Martha said.
“No, it doesn’t,” Jillian repeated
“I am joyous when I open my mail, and there is a check in the envelope,” Martha corrected.
Semantics matter because speech is nuanced. Just knowing the words, how to pronounce them and what they mean is not enough. If you miss on the nuance and the semantics, even slightly, the meaning is lost.
Jillian also got hung up on pronouns. Instead of saying, “She is going to the store,” Jillian might offer, “Her is going to the store.” Lots of kids talk that way; most aren’t doing it when they’re ten years old.
“Me got a new book today,” Jillian might say.
“Who? Me?” Martha might reply, pointing at herself. This would throw Jillian. “No. Me,” she’d say. “Jillian.”
Martha would tell her she meant, “I got a new book today.”
Getting the pronouns right would help eliminate what Martha called “baby talk,” which would have a big impact on Jillian socially. “She never lacked confidence. She always wanted to express herself. I just had to refine that,” Martha said. Much of Martha’s work with Jillian came down to memorizing: Verb tenses, for example. I am drinking today. Yesterday, I drank. Tomorrow, I will drink. This was simple, basic
stuff, but with Jillian, the learning took longer. The memorization came more slowly and required more repetition. It wasn’t unlike a typical child learning a second language.
“Kids with Down syndrome know the words they want to use. As their vocabulary grows, and they introduce multisyllabic words, the articulation issue gets bigger,” Martha said.
In later years, as Jillian entered fourth and fifth grades, it wasn’t her physical shortcomings that defined and limited her. Jillian never missed a kickball game. Her delayed speech created the growing divide between her and her classmates. Kids picked up on it. They went from trying to understand Jillian—“What did she say?”—to avoiding her.
It didn’t help that by the time she arrived in elementary school, the physical characteristics typical of children with Down syndrome had become apparent. People who didn’t stare before, stared now. Jillian’s face was cherubic and smiling—and also a little too round. Her eyes were shaped like almonds, owing to what the doctors label “epicanthal folds.” Jillian’s nose was obviously flatter than Kelly’s. She had small ears and a small mouth. Her teeth were irregular, with lots of space between them. She would need braces. Her eyesight wasn’t great, and soon enough she would wear glasses.
She tended to leave her tongue outside her mouth. This, too, is a Down syndrome giveaway. “Put your tongue away,” we told her.
Jillian’s hands were small, her fingers stubby. She walked in a forward-leaning way, head out front, which is typical of people with Down.
We are an appearance-crazed society. As Billy Crystal noted frequently, while playing a character based on Fernando
Lamas, “Eez better to look good than to feel good.” No one judged Jillian at age two by the way she looked. Her Down characteristics were not yet obvious. But that day would come. When it did, we wanted her to be armed with the proper retort. We wanted her to speak clearly enough to say to everyone who stared, “Don’t look at me and judge who I am. See what I can become.” This was the hope. Its beginning and end was language.
“We’re going to see Martha today,” we’d declare. And Jillian would respond, “I go to my talk class.” Jillian and Martha would work together for almost ten years, an hour a week, playing, reading, sewing the stitches in a tapestry of expression. Martha helped give Jillian a voice.
Achievements aren’t instant. Arriving at them is never a straight path. But they do occur. “What you need is to be happy with the small step,” Martha said. “All professions need that, but they don’t all embrace it. Everything builds.”
Families need it too. The small steps sustained us.
Jillian always had desire on her side. She wouldn’t have been so verbal if she hadn’t been so eager to test the world. Jillian wanted you to know Jillian. Martha gave Jillian her greatest gift. An angel had poured the cement of language into Jillian’s foundation. Martha was the first angel.
In the next few years, there would be more, in rapid fire.
You want a piece of me?
—
JILLIAN
J
illian might have seemed like one of those regimented super-kids who spend their entire lives in the car, heading for this therapy or that class. And we might have come off as those over-engaged parents you try to avoid at parties so you don’t have to hear tales of their children’s collective awesomeness. We weren’t those parents, and we didn’t overdo it. Kids need to be kids, most of all. They need time to lie on their backs in the cool summer grass, to just stare at the sky. They need time to do nothing, time to be bored. Boredom is healthy. It encourages creativity. We left Jillian to her own devices lots of the time. The curtain lifted daily on the Jillian Daugherty Show. Only the venues changed.
Jillian was hell-bent on seizing days. She grabbed life the way a knife grabs a filet. Her outlook affected everything she
did, from riding a two-wheeler to learning to spell. The best the rest of us could do was keep her in the middle of the road.
We encouraged her independence in all things. Well, most things. When your child is eight or nine years old and seeks wings, you give in by degrees. The training wheels come off, the boundaries are flexed. Life in the front yard becomes a memory. The front yard is for little kids. Big kids go out and discover the world.
Jillian had determined she would be big. And mobile. The girls who lived next door were mobile. One of them was Jillian’s age; the other two were younger. They were able to launch themselves up and down the driveway on Cozy Coupes and rollerblades, tricycles, bicycles, even a little electric car. Jillian definitely noticed when they went beyond the shelter of the drive to the neighborhood pool or to chase the bell-chime sounds of the ice cream truck.
Kelly was also mobile. He’d slip the earthly bonds of the house and yard, hop on his two-wheeler and vanish for hours. Jillian believed she was Kelly. On those first few days after school let out, she’d see him leave the house and her face would scrunch into a Jillian-mix of sadness and determination.
“I wanna go,” Jillian announced. “My turn.”
But she knew her rules were different. We wanted her to be as typical as any kid, but we had to be realistic. For Jillian to be outside, Kerry or I had to be outside—or at least be able to see her from the window. We limited her kingdom to the house and the yard. It was a small kingdom. We wanted her to be free, but we didn’t want to see her face on a milk carton.
We were thrilled with Jillian’s sociability and fearlessness, but it made for an inspiring and problematic challenge. Our ultimate goal was her independence. We wanted Jillian to test
boundaries, take chances. We wanted her to get lost, but we also wanted to be sure she was able to find herself.
How we balanced that act would be the question.
“I wanna go too,” she insisted.
“I have a job for you,” Kerry said.
“I made my bed, Mom,” Jillian answered.
“I need you to deliver these fliers.”
“Fli-ers?”
“These invitations to the neighbors,” Kerry said.
Kerry belonged to a neighborhood Bunco group. Bunco is a mindless game played with dice. That is all I know about Bunco. Bunco Night was an excuse for the wives to get together, get happy and gossip. It was Kerry’s turn to host, and she gave Jillian three fliers: For the Rutkouskys next door and for the Snyders and the Warzalas nearby.
“Yay!” Jillian said.
An irony of life is that it goes too slowly when we want it to go fast, and it goes too quickly when we wish it would slow down. Years aren’t really longer when you’re 8 years old than they are when you’re 68; they just seem that way. Kids are in a hurry. When they’re 15, they want to be 16 so they can drive. When they’re 20, they want to be 21 so they can drink.
When they’re in high school, they want to be out, either to college or a job. When they’re in college, they want to graduate. And so on. They push hard on their days. They stretch and test. It’s how they grow.
“Take these to the Rutkouskys, the Snyders and the Warzalas. Come right back when you’re done. Got it?” Kerry said. It was an easy first assignment: Jillian wouldn’t even have to cross the street.
“Got it,” said Jillian. She stuffed the fliers in her pocket and made her way down the drive. Kerry made dinner.