My daughter would hear the inspiring sounds of the older children waiting for another chance to go to school--a boom box blasting Marilyn Manson, the wheels of in-line skates smashing onto asphalt from the height of the nearby church steeple--and she would peer out her bedroom window with interest.
My wife and I would then be able to cajole her downstairs and get her ready for preschool. The school bus alarm worked wonders because the bus would arrive shortly before 8:00, which meant we had the full hour we needed before preschool began to convince her that Oreos weren't breakfast, and then find an outfit that would appeal to buddies Bridgette and Ellen--a profound enigma, since Ellen wears only overalls and Bridgette wears only skirts.
Now my point isn't that it was difficult to get my daughter out the door--though it could be.
My point is that my daughter sleeps like a mummy. There have been times I've been tempted to put a mirror over her mouth, and mornings when she's slept through the world's most cloying alarm: The Barbie Clock Radio.
"Ding, ding, ding. Hi. I'm Barbie. Ding, ding, ding. Hi. I'm Barbie."
Then it starts emitting the sort of beep that engineers at nuclear power plants hear when a radiation leak has just started twisting carrots into pretzels.
Once, my wife heard the alarm beep eighty-one times before Grace turned it off . . . and then went back to sleep.
Well, tomorrow morning, a few minutes before 8:00, that school bus will once more coast to a stop at the end of our driveway, but for the first time my daughter will be expected to get on it. Tomorrow is her first day of kindergarten, the day she begins going to school.
And so, like many parents, my wife and I have spent weeks wringing our hands at the prospect. We wonder two things:
* How did she grow up so quickly?
* How are we going to convince the neighbor children to start waiting at the bus stop at 7:00 A.M., so we can get Grace out the door by 8:00?
These are universal questions. It really does seem like yesterday that I tried to console my sobbing daughter a few days after she was born by offering her Placebo Breast: I held a pacifier to my naked chest, and told her my chest hair was a sweater. (It worked, but only because Grace was less than a week old and hadn't yet met her fashion-conscious friends Bridgette and Ellen.)
In any case, the first question is easier to answer than the second. Yes, in three months Grace will turn five, but a half-decade isn't really a long time at all. Our president has sex scandals older than that.
The second question poses a real conundrum, however, and my wife and I indeed wonder what we're going to do weekday mornings for the next thirteen years. Our hope--and we cling to it the way I do to every strand of hair on my folliclely challenged cranium--is that by getting her to bed early, she'll wake up early. Perhaps, we delude ourselves, we've simply allowed her to stay up too late all these years, playing and reading and watching Jay Leno. We'll see. We'll certainly know by this time tomorrow whether putting her to bed right after breakfast today did any good. With any luck, she will have gotten on the bus with her lunch box, waved to her parents from the window . . . and not noticed that the two of us were sobbing into our coffee cups.
Chapter 7.
A CRUSH ON YOUR TEACHER IS
NO EXCUSE TO ACT LIKE A GEEK
WHEN I WAS in fourth grade, I had a crush on my teacher so powerful that during the first days of school the woman must have thought I was mute. I was completely incapable of speaking casually around her, and when she started to call on me in late September, calling on me largely, I imagine, to see what my voice sounded like, my answers were mumbled and soft.
There were many reasons why I had a crush on Thalia Kominos (the name itself was an aphrodisiac). She had a mane of creosote-black hair that cascaded far down her back, a lengthy waterfall indeed because Mrs. Kominos was tall. A statuesque beauty. She was also an immensely gifted teacher, the sort of person who could make even math interesting--no small accomplishment, since I viewed math with the same distaste I had for my mother's cold cabbage and sausage soup.
Moreover, Mrs. Kominos had a teenage daughter roughly my brother's age, and somehow I got the notion into my head--mistaken, I'd learn later--that the girl was dating one of my brother's best friends.
Growing up, there was nothing I wanted more than to be my popular older brother or one of his friends. He was always class president, he played drums in a garage band that seemed to have weekly gigs at pool parties with gorgeous teen girls, and he achieved straight A's without effort.
Consequently, it was perhaps inevitable that I would become attracted to Thalia Kominos.
In fact, I actually grew protective of her, despite my inability to speak above a whisper around her. When she would lose control of the class, I would actually try to convince my friends to retake their seats or will them to settle down.
It was this protectiveness that caused me to open my mouth that October and say the most embarrassing thing I have ever said in my life.
Mrs. Kominos was trying desperately to keep us interested in the names of the South American capitals. Alas, she was failing: The class was giggling and passing notes, or ignoring her and talking aloud. The room was noisy, a point that matters not simply because it meant that it was difficult to be heard, but because I want to be sure you understand the decibel level of the action that precipitated my small outburst.
Someone (and this is a family newspaper, so I will use the scientific terms) expelled intestinal gas consisting largely of hydrogen, sulfide, and methane. And this person expelled it loudly. It sounded like a rocket ship lifting off.
The result was chaos: The class was howling, groaning, screaming.
It was then that I dramatically altered the trajectory of my year in fourth grade. I slammed my hand down hard on my desk to get the class's attention and said, "Calm down! It's a perfectly natural bodily function."
For a split second the class did grow quiet while they digested my pronouncement, but only for a second. Then the magnitude of what I had just said became clear: I had just called the funniest sound a fourth-grader can make "a perfectly natural bodily function." The class descended into bedlam, and even Mrs. Kominos had to bury her head behind her arms because she was laughing so hard at my colossally geek-like behavior.
It took me months to live that one down, and even by June there was the risk that whatever I said at the playground would elicit the response: "It's a perfectly natural bodily function." I could ask someone the time and he'd look at his watch and answer, "It's a perfectly natural bodily function."
My own daughter will start fourth grade when school begins this Wednesday, and so I have shared this tale with her and with her friends Yuki, Bridgette, and Ellen. I view this as thoughtful parenting.
Good luck, students. Study hard and never (even if you believe you are protecting your teacher) refer to the inadvertent expulsion of intestinal gases as "a perfectly natural bodily function."
Chapter 8.
DON'T BELIEVE ALL YOU READ:
THE KIDS ARE ALL RIGHT
FIVE YEARS AGO my wife and I were watching two young teenage girls in leotards and dance pants, and my wife murmured to me, "Will you look at that posture and poise? That's why you have your daughter take ballet."
Our own daughter was a few weeks shy of four at the time, and she was one of a dozen preschoolers and kindergartners toddling around in tutus the size of open umbrellas while Jennifer Barden, their dance teacher, worked nobly to keep a straight face, since the first ballet position for most of the kids was toppling over and the second was picking their nose.
The teenagers, Krista Billings and Stephi Needham, were assistant dance teachers, and my wife and I would learn later that they had been dancing with Barden since they were toddlers themselves. Over the last half-decade, my wife and I have seen Billings and Needham as they continued to assist Barden in the dance studio, as well as when they danced themselves in the end-of-the-year recitals.
The two young wo
men did everything from literally holding a child around her waist while she first lifted a leg, ostrich-like, and figured out that she could indeed balance on one foot, to demonstrating how to adjust the laces on a ballet slipper. They knew all their own dances, of course, but also all of the dances that the younger classes would be learning as well.
As a matter of fact, among my very favorite memories of either girl would be the final recital in June 2001, when Needham--then a junior in high school--donned the costume of an apparently very good-natured octopus and danced on the Mount Abraham high school stage with a group of four- and five-year-old pip-squeaks to the old Beatles song "Octopus's Garden." There are not many sixteen-year-old girls in this world who would willingly climb into an octopus costume and dance with kindergartners on a high school stage.
This month Billings and Needham graduated from high school. They will both start college in the fall and will no longer be assisting Barden at her dance studio. Billings plans to study architecture at Norwich University, while Needham will study child psychology and development at Southern New Hampshire University.
My wife and I worry often about the cultural pressures that seem to beleaguer teen girls these days, especially given how quickly our own daughter seems to be growing up. We have read about the eating disorders, the self-loathing, and the pressures to be popular and beautiful and wear suitably snug jeans. We have seen the statistics about teenage drug use and sex, and have shaken our heads ruefully.
But then we see young women like Billings and Needham, and we breathe massive sighs of relief. Yes, the high school hallways today might be filled with croptops and tattoos, and there are young women who define themselves solely in terms of their friends, their sexuality, or their cars.
There are also, however, teen girls who have transcended the stereotype and offer glorious role models for the children five and ten years behind them.
Earlier this month in a savvy Newsweek magazine cover story about the state of teen girls, writer Susannah Meadows outlined the three factors that seem to encourage confidence, independence, and emotional well-being:
* After-school activities
* Parents who are supportive and involved with their daughters
* A solid grounding in the family's religion
These might be common sense for many parents, but they are important and worth repeating.
Godspeed, girls. And thank you for being there for my daughter.
Chapter 9.
A PERSON CAN LEARN A LOT
FROM IAN FREEMAN
IAN FREEMAN'S coffee-colored hair is slicked back in an Elvis Presley pompadour. The fourteen-year-old has the late rock star's stage swagger down pat, as well as the Presley sneer: boyish and ingratiating one moment--the smile of a shy kid from Mississippi who doesn't quite understand what all the fuss is about--self-assured and almost roguish the next. The music begins, a series of vibrant guitar riffs, and girls race from their seats to the very edge of the stage, waving their arms and screaming. Freeman raises his eyebrows with a rock star's studied insouciance and twirls his microphone at these adoring fans. If you squint, it is almost possible to see the King strutting there on the boards, instead of a teenage boy with Down syndrome.
Ian is lip-synching to the music on a Thursday afternoon in an annual show in northwest Vermont in which all the acts feature performers with developmental disabilities. This year the show is in the Contois Auditorium, the modest theater in the city hall building in Burlington. I like the notion that the mayor of the state's largest city (by far) and most of the city administrators are working nearby: It adds a veneer of mainstream approval to a cabaret in which the mere fact that one of the performers is playing "Ode to Joy" on an electric organ matters far more than his technical prowess.
I've become friends with Ian because his mother and my nine-year-old daughter--both of whom are named Grace--are performing in a community theater together, and Ian, the two Graces, and I have been carpooling together two hours a day, four days a week, to rehearsals. The two Graces have voices and ranges that put Ian's and mine to shame when we sing together in the car, a reality that troubles Ian not at all and me, these days, only a bit.
Before I met Ian, I was sufficiently self-conscious that I would never have sung in the car.
Grace Freeman has been raising Ian entirely on her own since the boy was born. She has no other children. She and Ian's father broke up while Grace was pregnant--the two weren't married--and she had never expected there would be any co-parenting.
It is no easy task to be a single mother in even the best of circumstances, and it is particularly challenging when your child has Down syndrome. Ian also was born with a variety of other ailments that often accompany Down syndrome, including deafness and asthma. But Grace and Ian have been their own small world for almost a decade and a half now, and my sense is that if their little planet isn't perfect, in some ways it may spin more smoothly than the one on which most people roam. Ian is the first person with Down syndrome with whom I've become friends, and as I've gotten to know him it's become apparent that he has a good deal more to teach me than I am likely to teach him.
Ian and I and the two Graces are in a pizza parlor on our way to one of the first rehearsals for the show the females are in. Ian's mother is an elementary school teacher by day and an active member of a variety of community theater groups by night. When she isn't performing in a show, as she is now, she is likely to be a music director. Almost Ian's entire life he has been with her at rehearsals, and so he knows musicals the way some teenagers know MTV videos. His favorites at the moment are The Secret Garden, the show his mother just finished in Burlington, and Once on This Island, the show she is doing now in Stowe, Vermont. His ability to memorize entire librettos would be impressive with any child, but it is particularly striking given that Ian reads at a second-grade level and so he learns them largely through what he picks up with his hearing aids. (When I expressed, evidently with no small sense of wonder, Ian's uncanny ability to learn song lyrics to Kim Xidas of the National Association for Down Syndrome, she reminded me gently, "People with Down syndrome have gifts just like anyone else.")
While the four of us are in the booth in the restaurant waiting for our pizza to arrive--the girls on one side, Ian and me on the other--I am sipping a diet cola and Ian is drinking an orange soda.
"That looks good," I murmur, having not had an orange soda in years. His mother is cutting his pizza into small pieces for him.
"Try it!" he says, and pushes the glass over to me and starts to lean the straw toward my mouth.
I defer. I'm a pretty uptight guy: I don't share straws with anyone other than my wife and my daughter.
"Really, Chris, it's so good," Ian continues. "I want you to have some." Ian speaks quickly, and the combination of his deafness and Down syndrome means that it's difficult to understand precisely what he is saying. It sounds sometimes as if he is trying to speak with a soggy English muffin in his mouth. Ian's intent, however, his desire to share something that he cherishes with me, is clear. And so I reach for the straw he is aiming at my lips and take a sip. It is good--considerably sweeter than the diet stuff on which I subsist, and a comforting echo of soft drinks from my own adolescence--and I thank him. He nods, smiling. Then abruptly he wraps both arms around me in a ferociously affectionate bear hug and tells me that he loves me.
Even my brother and I have difficulty saying that to each other.
Roughly one out of every eight hundred to a thousand children is born with Down syndrome. The odds increase dramatically as a woman gets older: A twenty-year-old has a mere one in two thousand likelihood of giving birth to a baby with the genetic disorder; a forty-nine-year-old has a one in ten chance.
Grace Freeman was thirty-six when Ian was born. She had done no prenatal testing--no amniocentesis, no ultrasonography--both because she wanted a baby so badly and because there was no history of Down's in her family. She told herself it wasn't possible that her child might b
e born with a disability. Nevertheless, she admits that while she was pregnant she wondered sometimes if she was whistling in the dark, and she wasn't completely surprised when he was born with the syndrome: "I'd sensed something was wrong," she recalls. "I had no concrete reason to believe this, but Ian started moving around late, and when he moved, he just moved so slowly."
Down syndrome is named for John Langdon Down, the nineteenth-century British physician who described the characteristics of the condition and differentiated it from mental retardation. The condition is the result of a chromosomal abnormality: Instead of the normal forty-six chromosomes in each cell--twenty-two pairs, plus the two that determine gender--a person with Down syndrome has a forty-seventh. The vast majority of the time, that extra chromosome is linked to the twenty-first pair of chromosomes. The scientific term is the pleasant-sounding alliterative "trisomy 21."
Grace says she was devastated when, ten days after Ian was born, she received the news that the chromosome tests had indeed confirmed that her little boy had Down syndrome: "We were at my mom's, and I just went completely to pieces. I was beside myself. I remember people telling me that I had to have a funeral for the baby I didn't have--that perfectly healthy one."
People were also telling her that she should consider giving Ian up for adoption, that as a single mother she couldn't possibly raise him on her own.
"But I didn't have any doubt," she says. "I knew I could do it. I had two brothers and their wives here in Vermont, my mom and dad, a lot of cousins, and a niece living nearby. We'd get through this." Her mother has been her greatest support: From the very first meeting with a geneticist through Ian's five separate ear surgeries, invariably she has accompanied her daughter and grandson to his doctors' appointments. But Grace has also been helped enormously by her friends in Lincoln, the central Vermont village in which she and Ian live. When logistics prohibit her from bringing Ian with her to a rehearsal, neighbor Lisa Dobkowski will stay with Ian until she gets home; when an overnight class trip to the Children's Museum in Boston prevents her from returning to Vermont until the next day, Lisa's fourteen-year-old daughter, Emily, will spend the night in the guest room in the Freeman house. Other times Ian will have a sleepover with friends up the road. And, these days, Grace is comfortable leaving Ian home alone for hours at a time, making sure he understands that if he needs anything he should simply press the redial button on their cordless phone and, for instance, their friend Barb Aitken will pick up.
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