An Uncomplicated Life Read online

  “I can’t find my ’signment book,” Jillian said. That’s how a bad night might start.

  Dinner was finished and the table was cleared. Kelly was in the basement listening to music, and Kerry was taking a bath. Jillian and Dad were at the kitchen table, Jillian’s books piled like dirty dishes, pencil box open, spiral notebook. “Where do you think your AS-signment book is?” I asked. I knew where this was going. It was now 7:30 p.m. It was going until 11:00 p.m.

  “I don’t know,” Jillian said.

  “Jillian. It is your responsibility to keep track of your assignment book. You’re in fourth grade. You’re not a baby.”

  “I thought I had it.”

  “That doesn’t help me. Find your AS-signment book,” I said. At this point, I wasn’t emphasizing the first syllable to help her pronounce the word. I was just doing it to goad her. I was doing it to vent my spleen.

  Which was ridiculous, of course. We never wondered if Jillian cared as much about her work as we did. She cared more. On nights it didn’t go well, she’d apologize. “I sorry I let you guys down,” she’d say.

  “You didn’t let us down” was our response. We owed it to Jillian to work as hard as she did.

  We never mentioned grades with her, either. We didn’t want her to feel any added pressure, beyond what she put on herself. Still, Jillian knew the difference between an A and a D. On the days she’d empty her backpack and a D paper fluttered out, she would lower her gaze. “I try my hardest,” she’d say.

  “That’s all that matters,” we’d answer. “You do your best, we’ll do the rest.”

  Jillian’s conscience doubled at homework time. She knew she had to put in the effort. She wanted to please. In the face of her desire to do well, my short fuse looked petty and childish. Lots of nights during homework, I wondered which of us had the syndrome.

  “I got it!” Jillian said. She smiled. The assignment book was in the bottom-most canyon of the cavernous backpack, beneath a prehistoric sandwich.

  “Okay. Whaddaya got?” I asked.

  She had math problems, science questions and spelling words. But when we looked on the page Jillian had written down for the math problems, they weren’t there. Problems 1-12, page 28, she wrote. There were no problems on page 28. None at all.

  In ensuing years, we would include in Jillian’s IEP a request that someone check her assignment book at the end of the school day to make sure it was accurate. We’d also demand that the homework be modified to match Jillian’s ability. But this was fourth grade, and on the days Mary left it up to Jillian to get the assignments, we’d often resort to guessing.

  “Jills, there are no problems on page 28,” I said.

  “Oh.”

  “What page do you think they’re on?”

  “I’m not pretty sure,” Jillian said.

  “How do you expect me to help with homework if you don’t write down the assignments correctly?”

  “I don’t know, I guess,” Jillian said.

  “You don’t know,” I said. “I guess I don’t either. So what do we do now, Jillian?”

  Even a fourth-grader with a learning disability knew better than to offer another “I don’t know.”

  “Look on another page,” said Jillian.

  ON NIGHTS SUCH AS this—when divining the assignment became as laborious as actually doing it—I would wonder about our mission to keep Jillian in a regular classroom. “Maybe she can’t do it, Ker’,” I’d say.

  I wondered if we’d made enemies at school for no reason. Maybe their time-honored practicality was wiser than our insistent optimism, and we’d set up a target out of our range. Worse, we’d tried to make our daughter fit our definition of what a “free and appropriate” education should be. What constitutes “appropriate” when we can’t even figure out the homework assignment?

  “Some nights I think the school is right,” I’d say. We’d be lying in bed. The house was dark and quiet, both kids were asleep in their rooms down the hall. This is when we did most of our deep discussing. “What if we’re expecting too much?” I asked.

  What if we were preparing Jillian for the wrong things? We’d assumed she’d get the classroom education given every other child. We believed she would learn like everyone learned, only more slowly. With peer modeling and social interaction, she’d achieve her potential, whatever that might be, far more easily than if she were segregated part of the day from her typical classmates.

  What if meeting Jillian’s potential didn’t involve a traditional classroom education?

  There were programs already in place for kids with learning disabilities. These were essentially vocational programs, where she could learn a skill that could lead to a paying job. Maybe that was the way to go. “I want to do what’s right by Jillian, not what we believe she should have,” I’d say.

  What if Daniel Boone has missed the blaze on the tree? Were we taking the wrong trail?

  Who’s this for? Does Jillian want this? Or do we? She was a well-adjusted kid. Jillian could be happy assembling cardboard boxes in a sheltered workshop. Things that matter so much to the rest of us—money, status, appearances—were not issues in her world.

  Kerry didn’t agree. She was convinced that Jillian would rebel if she were simply in a vocational program. “I can see her in that environment, looking around at everything and being insulted.”

  I don’t know. Part of Jillian’s disability—part of her Down syndrome-ness—is a lack of reflection. Jillian doesn’t dwell on anything other than the here and now. That also means she’s not at all self-absorbed.

  “What if we’re doing all of this for us?” I asked Kerry again.

  This was my despair talking. Kerry, as usual, had the right answers. Jillian hadn’t inherited her spirit from me. “It’s not about whether she can do it,” Kerry would say. “It’s about giving her the chance.”

  Kerry reminded me that there were other children in Jillian’s class who were not gifted academically, whose talents ran away from college and toward a trade. The difference was that the school allowed those kids to define their course. “We are not going to let the school tell us who Jillian can be,” Kerry said.

  She reminded me of our mantras: “Expect Don’t Accept.” And my favorite: “All we can do is all we can do.”

  I needed that speech every so often.

  JILLIAN AND I FLIPPED through the math book, looking for problems 1–12 that were not on page 28. We found 12 problems on a page nearby, and the next afternoon, when she brought the homework back home, checked or graded, we’d find out if we’d guessed right. For now, we soldiered on.

  Jillian learned math visually. She had small, round counters to shift, from the ones pile to the tens pile. She had a number line. She had her fingers. Math was labor intensive, but not difficult. At least not in fourth grade.

  Once we had the math problems solved, we moved to spelling. Eight words, same as vocabulary, written on three-by-five cards.

  “Store,” I said.

  We’d look at the card together. Nancy Croskey, Mary Smethurst, and other teachers in previous years had done a good job giving Jillian the building blocks for learning to spell. One of those was the concept of blends: Consonants that often appear together at the beginning of a word. Such as S and T. She’d also been taught vowel sounds, long and short, and that occasionally at the end of a word, E’s would have no sound.

  “Store.”

  “S-O . . .”

  “Remember the blend.”

  “S-O . . .”

  “Jillian,” I said. I made the sound of the S-T blend. Ssss-tuh.

  “S-T . . .”

  The O threw her, because it didn’t sound the way a typical short or long O sounded. “S-T-A . . .”

  “Nope. Listen to me,” I said. “Aw. What sounds like Or?”

  “A . . .”

  “No. Not A. What else?”

  “E . . .”

  “No, Jills. E sounds like Eeee or Ehhh. What else?”

>   She paused a few seconds. There came a point during every homework session when her determination would overtake my patience. Usually it wouldn’t take long. Her will was built for the long haul. My patience ran a hundred meters. Because she was nothing if not sensitive and eternally trying to please—and a little afraid of the impending eruption of Mount Dad—she considered her next response carefully.

  “O?”

  “Yesss!” I sounded like Marv Albert, announcing a New York Knicks game. I threw my arms into the air. “S-T-O . . .”

  Jillian said, “S-T-O.”

  I made the R sound, my tongue tapping the roof of my mouth. “Rrrrr. S-T-O-Rrrrr . . .”

  “S-R,” Jillian said.

  “Okay,” I said. “Let’s try it again. Ssss-tuh.”

  “Ssss-tuh,” Jillian repeated.

  “Aw,” I said.

  “Aw.”

  “Ssss-tuh . . . aw . . . Rrrrr.”

  “S-T-O-R?” Jillian asked.

  “Yesss!” I about roared. “Now, spell ‘store.’”

  “S-T-O-R,” Jillian said.

  So close. No time for frustration yet. That’d be like jogging the last ten meters.

  “What letter did we say was sometimes silent?” I asked.

  “E?” Jillian asked, hesitantly. She knew we were close, too.

  “Yep. Now spell store.”

  “S-T-O-E-R,” Jillian exclaimed, pleasure making her face a moonbeam.

  “Not quite, sweetie. Remember how we said that the silent E was usually at the end?”

  She did.

  “Okay. Then just put the E at the end,” I said.

  “S-T-O-R-E,” Jillian announced.

  I burst from my chair. I raised my arms in the air and did a little man-dance around the kitchen, I chanted, “S-T-O-R-E, store, store, store!” I high-fived my brilliant, fourth-grade daughter who, after 20 minutes and countless repetitions, was now the owner of a brand new word.

  Remember about the little wins?

  Kelly had been able to spell “store” in kindergarten. We never quizzed him on how to spell “store.” We simply assumed he could. But with Jillian, we relished her ability to spell “store.”

  I called Kerry down from her bath. “Spell ‘store’ for Mom,” I said.

  Jillian stretched it out for dramatic effect, like those kids in the National Spelling Bee. At least that’s how I saw it. Maybe she was concentrating on every letter. That was more likely. No matter. “S . . . T . . . O . . . R . . . E,” Jillian said.

  Hugs all around. We weren’t going to take this leap for granted. No sir. Jillian spelled “store” by gosh. Yes, she did.

  And then . . .

  “Again,” Jillian said.

  Again?

  “Let’s do it again.”

  And so we would. Every letter, every word. All eight words, until Jillian was perfect. Sometimes, it would take three hours. Three hours, to spell eight words. Eight high-fives, eight trips around the kitchen, eight reasons for joy. There we were at 11:00 p.m., dancing around the room.

  The next morning at breakfast, Jillian would request that we go over the words again, one last time before the test. “I get one hundred percent,” she’d say.

  It went like this for about three years. The index cards, the blends, the vowel sounds. Don’t forget the silent E. The hours in the kitchen, at the table, hope and fear and pride and dread. Despondent wondering in the dark. Kerry lighting the candle. Jillian’s forever ability to put one foot in front of the other, for as long as she needed to walk the trail. Kerry’s better nature and patience. My well-intended wrath. The dancing.

  Night after night after night. Homework was frustrating and exhilarating, triumphant and desperate. It was Jillian at her absolute, resolute finest, hauling her well-intended, sometimes fretful dad and her entirely on-board mom along for her ride.

  Homework was the whole Down syndrome experience wrapped up in a single word.

  CHAPTER 12

  The Coffee Song

  I like coffee

  Coffee like me . . .

  —PAUL

  I dislike mornings. I favor evenings. Perky people irritate me. I am a sunset person. The day is done, the work has been put in. Time to sit back and assess, preferably with a beer and a cheap cigar. I’ve taken sunset photos all over the world, from the Parthenon to the Gulf Coast of Florida to Sydney, Australia. I achieve, then I reflect. I’d rather reflect.

  Jillian, being Jillian, would rather achieve. Each school day, she sprang to life like a toy with new batteries. I stumbled down the stairs. We were the oddest of partners.

  One school morning in her sixth grade of learning, she wondered, “Dad, why you not a morning person?”

  I ask her not to speak to me.

  “I a big morning person,” she said.

  Well, of course. Blasting from the womb in five minutes flat, I guess you would be. “Eat your Frosted Flakes,” I said.

  Kerry had left for school earlier, and Kelly had his own routine. By 7:00 a.m., both were out of the house. It was up to me to get Jillian ready for the bus. Most days, it was bearable. But if I’d been up late covering a game, it was something less. I was as functional as a bowlful of peas.

  “Whatchoo doing today, Daddy-O?”

  Huh?

  “Are you working today, sports person?”

  “Yes, as a matter of fact, I am writing today.”

  “’Bout what?”

  “I dunno yet. Eat. You have five minutes.”

  “I have a spelling test today.”

  “Congratulations.”

  “I go get an A.”

  “That’d be great. Three minutes.”

  “I be ready,” she says. “I always ready.”

  That was true.

  Jillian was six years old and starting first grade the first time I walked her to the school bus stop at the end of the common drive. I held her hand as we walked, and thus began a ritual that would last for three years. Jillian was so small, she had to crawl up the bus steps. She looked like a climber, scrambling the last few feet up El Capitan. A year or so later, she did the same thing. I couldn’t figure out why. She’d grown, in height and coordination. Why the crawl up the bus steps? I found out after school, when Jillian’s teacher sent home a note wondering why someone had dressed her with both feet in the same leg of her culottes.

  When Jillian was in fourth grade, she decided handholding was out. Well, okay. We still walked down together, though, a morning glory that never failed to amuse and enlighten.

  “What are you going to learn today?” I’d ask.

  “Everything,” she’d say.

  By sixth grade, Jillian was setting her alarm, making her bed and dressing herself. I’d stopped the gentle wake-up nudges the previous year. I missed them. They seemed the natural evolution from our evening dances around the family room. I never had to wake her or tell her how late she was. Sometimes, she had to wake me. By the time she got to intermediate school, fifth grade, she didn’t need my help. I might as well have been furniture.

  Jillian and I were partners at sunrise, committing conversation at the breakfast table. I didn’t arise at dawn for her benefit. I took comfort in the ritual sameness, even as it evolved and I began to matter less. You never know how the bonding will occur with your children. You can’t arrange it. It’s the spontaneous product of the everyday. With Jillian and me, it was weekday mornings, across the table.

  I’d quiz her on the homework from the night before. “Who lives in the White House?”

  “George Washington.”

  “No. I mean now.”

  “George Bush.”

  I’d make sure the shirt she was wearing matched the shorts. For a while, I tied her shoes. I made her breakfast. Cereal and toast. I packed her lunch.

  “No carrots,” Jillian might say.

  “They’re good for you.”

  “They’re not good. I don’t like carrots.”

  “No,” I’d say. “I don’t m
ean they taste good. Even though they do. They’re good for you. They’re healthy.”

  Jillian had occasional trouble with the subtleties of the language. She was very literal.

  “I don’t like healthy.”

  Jillian usually complained about something. Just because you have Down syndrome doesn’t mean you don’t eat like a typical kid. I’d pack the carrots in a plastic bag, next to a peanut butter and jelly sandwich in a plastic bag, next to a pudding cup in a plastic container, next to a plastic spoon, in a paper sack. Heaven help the earth.

  “You better eat those carrots,” I’d say.

  I’d ask her about her friends. “Katie be mean to me,” she’d say.

  Katie Daly was Jillian’s best friend. Why?

  “I not sure,” she says. “She says she not going to sit with me for lunch.”

  “I’m sure you guys will work it out.”

  I invented a jingle about my morning cup of coffee. I called it, believe it or not, “The Coffee Song.” It was brilliant:

  I like coffee

  Coffee like me

  I don’t like tea

  Make-a-me pee

  This never failed to get a giggle from Jillian, who was never too cool to manage a laugh at the strange things her father did. “Sing the Coffee Song, Dad,” she’d say nearly every morning.

  I invented new verses, equally memorable:

  I like coffee

  It’s my favorite drink

  It doesn’t stink

  Like N-Sync

  “N-Sync doesn’t stink,” Jillian protested.

  I’d announce a new rendition of the Coffee Song by tapping my spoon on the side of my cup. At which point Jillian would either leave the room or giggle, depending on her mood and tolerance level that day.

  Tap-tap-tap-tap.

  I like coffee

  And ya should, too

  It’s my favorite brew

  Doodle-dee-doo

  This was the daily dialogue of our lives. For 15 or 20 minutes, 5 days a week, 10 months a year, Jillian and I paused long enough to solve the world’s problems. I never did this with Kelly; he didn’t need the sort of morning direction I believed his sister did. He’d hurtle down the stairs like a cattle stampede, slam a Pop-Tart into the toaster, give it all of 30 seconds and be out the door, not so much as a “See Ya” in his wake.