An Uncomplicated Life Read online

  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.

  CHAPTER 8

  Jillian

  You want a piece of me?

  —JILLIAN

  Jillian 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.

  Half an hour later, Kerry noticed Jillian wasn’t home. Kerry reacted the way most mothers of first-graders would in that situation. She panicked. She called Denice Rutkousky. “Has Jillian been there?”

  “Yes.”

  “Is she there now?”

  “No. She left 20 minutes ago.”

  The Snyders. They lived one house down the street, to the left.

  “Did Jillian come by?”

  “She did.”

  “Still there?”

  “Not in the last 15 minutes.”

  Kerry’s heart played bongos in her chest. “The first time I let her out of my sight . . .”

  Her fingers shook as she dialed the home of the Warzalas, two houses up the street. If Jillian wasn’t there, the next call would be to 9-1-1. The phone rang. Once, twice, three times. Oh, no.

  That’s when Jillian answered the Warzalas’ phone.

  “Jillian?”

  “Yeah?”

  “What are you doing?”

  “Waiting for the Warzalas to get home.”

  Kerry wondered how Jillian got in. Wasn’t their front door locked?

  “Yeah,” Jillian said. “I go ’round back.”

  Jillian had felt a sworn duty to place the invitation directly into the hands of Cathi Warzala. This was her first assignment out of the front yard. She wasn’t going to blow it. She figured she’d just hang out in the Warzalas’ family room until they showed up. She had her feet up in a La-Z-Boy. She was looking for some microwave popcorn. She really was.

  “You can come home now,” Kerry managed. All parents recognize that unusual mixture of anger and relief upon locating a wayward child. That was Kerry at that moment.

  “Mrs. Warzala not home yet,” Jillian protested.

  “Home,” said Kerry. “Now.”

  When Jillian arrived, Kerry didn’t yell.

  But I did. I yelled, and I lectured.

  “Did Mom tell you to come right home?” I asked.

  “I want to give Mrs. Warzala the note,” said Jillian.

  I went on a while, suggesting that the mailbox would have worked, that Mom was frantic.

  “Fran-stick?” Jillian interjected.

  . . . that if we were ever going to trust her to leave the yard, she had to do better, and that if she pulled that stunt again, I’d personally chain her to her bedpost for the rest of her life. The usual stuff.

  I might have raised my voice above acceptable conversational levels.

  Jillian listened calmly. She might even have nodded once or twice, in response to the obligatory “Do you understand me?” I could tell she was not moved by the force of my argument or by the logic involved. Jillian, who was by then 50 pounds of iron will, still believed she had been right to take up residence in the Warzala family room.

  When I was done haranguing, or when she believed I was done, Jillian screwed up her face and looked at me dead-on.

  “You wanna piece of me?” she asked.

  “I beg your pardon?”

  “You wanna piece of me, Daddy-O?”

  I have no idea where she came up with that. Maybe it was from the movie Home Alone, which she and Kelly had seen, oh, 500 times. Maybe it was from one of Kelly’s old videotapes of the Teenage Mutant Ninja Turtles. Maybe she’d heard it from some kid at school.

  Regardless, I couldn’t stay mad, even as I wanted to. “You better hope I don’t want a piece of you,” I managed.

  “Come on,” Jillian suggested.

  I burst out laughing. Any groundwork I’d laid about coming home at the appointed time, and the penalties for failing to do so, was in a shambles.

  I love Jillian’s sense of humor, and I know you can’t be funny without being smart. She may not be smart in the IQ sense. No one’s suggesting Jillian will be building reactors anytime soon. But she’s plenty smart in knowing what resonates. She understands what prompts a chuckle, what makes the synapses gather and fire.

  This is essential to getting along with the world. Jillian is a citizen in good standing, not because she practices the King’s English. Sometimes, even Kerry and I have to ask her to repeat herself. She gets along because she knows how to get along. She is social because she is confident in herself. She is confident because she has been placed in typical social situations and has succeeded.

  Her sense of humor has eased her road. It is one of life’s ordinary blessings.

  This Deliver-the-Fliers Incident helped Jillian over whatever qualms she had about venturing beyond the demilitarized zone of the front yard. And the more we let her, the more that independence dynamic kept kicking in. All manner of interesting things ensued.

  THERE ARE FOUR HOUSES on our little drive. At one time or another, small children were living in each one. Part of the drive’s appeal was that parents could let their little ones out without worrying about traffic. So we let Jillian out. It was like letting a monkey loose into the people portion of the zoo.

  One summer day, as the mothers of the drive gathered on folding chairs and the kids played, Jillian ventured unnoticed down to the Slatterys’. They had two kids—Kate the eldest and Tommy the youngest. Not that it mattered; Jillian was friends with everyone—whether they were interested or not.

  Their storm door was open, so she walked inside. Maybe she called for Kate or Tommy. Maybe she just wanted to come in. When she discovered nothing or no one on the first floor that interested her, she went upstairs, and into the master bedroom, where she saw John Slattery emerge from the shower, seeking a towel.

  “Hi, Mr. Slattery,” Jillian said.

  “Uh . . .” was the essence of John’s comeback.

  It might have been that same summer that Jillian stole a car.

  The phone rang in the middle of the day. Kerry answered.

  The man on the phone lived up the street, maybe f
ive houses away. He didn’t sound angry, really. Nor especially concerned. You could tell by his voice that he was talking while smiling. He knew Jillian. Or at least knew of her. She was the kid who had walked in on the naked guy.

  “Your daughter took my son’s Jeep out of our driveway,” he said. “She’s on Ashire, heading up to the pool.”

  The Jeep in question was electric and no bigger than a little red wagon. Ashire Lane was on the way to the neighborhood pool. I guess Jillian didn’t feel like hitchhiking. By the time Kerry discovered our young car thief, Jillian was almost to the pool, steady-truckin’ at about a mile an hour. “Does this Jeep belong to you?” Kerry asked.

  “Yes,” Jillian said.

  “Jillian.”

  “I bought it.”

  She meant to say she “borrowed” the ride. At least that was my interpretation. Bought, borrowed. Whatever.

  “I ride,” Jillian added. She was pleased with herself.

  Lots of Jillian’s adventures provoked terror before laughter. She had a tendency to wander. Every other kid explored. In Jillian’s mind, she was just doing what her peers did. In fifth grade, she decided it would be a great idea if she walked home from school. It might have been, but we lived eight miles from school.

  By this time, Kerry had started back coaching high school girls’ soccer in the fall. After Jillian’s school day ended, she could take the regular school bus home. Or she could catch the bus that went from her school to the high school. That bus served kids involved in extracurriculars at the high school. Jillian was marginally a ball girl for the soccer team, though it was up to her if she came to practice or went straight home.

  The bus drivers looked after her. They had walkie-talkies and one of their daily routines at 2:30 p.m. was to check with each other, to make sure Jillian was on someone’s bus. This particular day, she wasn’t. The drivers called the school, then Kerry. The school dispatched its police officer to locate Jillian. Officer Fred Barnes set out in his cruiser, and it didn’t take him long to find our world-trekking daughter. She was less than a mile from school. Amazingly, she was headed in the right direction.