An Uncomplicated Life (15 page)

You could also count on finding various lunch accoutrements. I packed her lunch half the time, but that didn’t stop Jillian from adding to the scripted menu. Oreos were a favorite as she got older, but there were potato chips and crackers of all sorts. At Halloween, all manner of bite-size teeth killers got in the bag. “I love my lunch,” she explained. Jillian packed for school as if she were going on an eating vacation. And don’t forget the miniature football, for recess with the guys. And a frame, containing a three-by-five-inch picture of Walker, our black Labrador retriever. “Why do you take a picture of Walker to school?” I asked.

“Because I love my Walker,” Jillian said.

The backpack was so big, we worried about back pain. If Jillian weighed 85 pounds in fourth grade, 25 of them were owed to this appendage she yanked onto her shoulders. She looked like a mover hauling a refrigerator.

“Is that thing too heavy? Let’s see what we can take out of there,” I asked occasionally.

“It’s fine, Dad. My ’portant stuff.”

We pondered getting Jillian a small, wheeled suitcase, but we didn’t know how she’d manage climbing the school bus
steps. So we sent her off every morning with a refrigerator on her back. Pencils, pens, markers. Reams of notebook paper. A ruler, a big eraser. Why do you need a thousand sheets of paper? “For big mistakes,” Jillian offered. Separate three-ring plastic folders for each subject. A hairbrush.

And an assignment book. That weighed the most. On all of us.

Every student had an assignment book for homework details. It was the size of a five-by-eight-inch book. Each lined page had a day and a date. All students were expected to write down their homework assignments; so was Jillian, though she often had help from an aide. Sometimes, the assignment book was perfect, the key to the homework highway for that particular night. On those days, each subject would be followed by a colon, then the pages to be read or the problems to be worked. Jillian had written it all in, in her diligent scrawl that was just legible enough. Just as often, the aide had done the writing. On those blessed nights, we could begin the homework task assured that we were doing the right work.

On other nights, the assignments would be wrong. On those nights, the assignment book assumed a life all its own. It was an evil existence, full of fear and dread and my four-letter frustrations that sometimes made Jillian cry. “The damned homework is hard enough when the assignment is right!” I’d say. “What is so (expletive) hard about an aide or a teacher looking at the (expletive) assignment, to make sure Jillian copied the (expletive) thing the right (expletive) way?”

All kids need help with homework sometimes. With Jillian, help with homework was an occupation that became a preoccupation that became an obsession that, on occasion, became a full-blown source of rage and doubting.

Kerry and I alternated homework nights, because after working all day ourselves, neither of us relished consecutive nights at the kitchen table. Kerry was far more patient than I, partly because she was a teacher and patience is a teacher’s best friend. She was also more closely involved with Jillian’s day-to-day learning and thus better equipped to deal with the setbacks.

I just got mad a lot.

“Whaddaya got?” I’d say.

Jillian would haul in the backpack, toss it onto the kitchen table, an act of physical strength and an unburdening.

“Math and vocab,” she’d say.

“Lemme see the assignment book.”

Jillian would scrape through the backpack and tentatively hand it over.

On the good nights, we’d start right away. “It says, ‘Review vocab words for test Friday.’ You got the words?”

There’d be more pawing, deep into the maw of the backpack, where she’d find 16 three-by-five index cards. Eight with words on them—eight with definitions. So far, so smooth.

Mary Smethurst had picked the words. Mary was Jillian’s aide for three years, grades two through four. Caring, empathetic and kind, Mary became the engine of Jillian’s aspirations. If Jillian was able to learn something, Mary would see that she did. She wrote the vocabulary words on one side of the index card. Sometimes, on the other side, she’d draw a picture to illustrate the word. We’d look up the word, then write its definition on a separate card.

This side of the kitchen table: Words.

That side: Definitions. It was like when we played Concentration with playing cards.

“You ready?” I’d say.

Jillian was always ready. She was born ready. “Of course,” she’d answer.

“Challenge,” I said. A fitting word to start with, I thought.

“Change,” Jillian said.

“No, sweetie. ChaLLenge.” I’d press the tip of my tongue to the bottom of my upper lip. I’d draw out the
L
sound. Lllll. ChaLLenge.”

“Change.”

“Look at me. ChaLLenge. Two Ls in the middle,” I said. “Le, le, le.”

“ChaLLenge,” she said. “Le, le, le.”

“A call or summons to engage in any contest,” I said.

The card with that definition was in the opposite row. “Do you see it?”

Jillian scrunched up her face in concentration so that her brow furrowed and her nose assumed the shape of a rabbit’s. “No,” she said.

“Look closer.” I repeated the definition, slower this time.

Jillian scanned the list. “What was the ‘denition’ again?”

“It’s deFInition, Jills. There’s an
FI
in the middle.”

More face scrunching. It was never Jillian who became impatient or discouraged. That was my job. “De-FI-nition,” she echoed. “That one.” She pointed to a card.

“Great job!” I said.

“Thanks, Daddy-O,” she said.

And so it would go. When Jillian matched a pair correctly,
she’d remove it from the table. On the good nights, the words were pronounced and defined and the 16 cards were off the table in two hours. Eight vocabulary words, two hours. Fifteen minutes a word. The lifting was heavy and exhausting, on the good nights.

On the bad nights, it was something else. Jillian’s lesser intellect intersected with her teachers’ occasional apathy to produce in me a frustration that could slip into sadness. On nights when the homework careened off track, I could lose touch with Jillian’s guts and determination. I’d fall down the rabbit hole and into despair.

“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
?”