A Different Kind of Normal, Part 4
Written By Charlotte Meryman
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Jimmy is gearing up for his first day in public kindergarten — even as he and his parents are becoming more entrenched, and more at home, in the special needs community.
The series so far: We've followed Jim and Michelle Foard, Jimmy, 5 1/2 and Maddie, 3, for a year now. Jimmy was born with Alfi's syndrome, or 9p minus, a rare chromosomal disorder, and also exhibits about half the signs for autism. The Foards have shown us that to be Jimmy's parents is to embrace "a different kind of perfect," as Michelle says, and "a different kind of normal."This morning, something in the way Michelle called his name made Jim turn off the tap, set down his razor, and step into the hall. Michelle was just coming up the stairs, clutching a small, white plastic stick in her outstretched hand. "We're going to have another baby," said Jim, mustering as much enthusiasm as he could.
They stood at the landing for a moment, hugging. Michelle cried. Both she and Jim liked that she was finally recouping some freedom after the labor-intensive baby years. But they'd also talked about how nice another sibling might be for Jimmy and Maddie — and, frankly, how important another sibling could be to Maddie for sharing in Jimmy's care after they are gone. But forget the months of soul-searching and debate. Never mind the decision they'd reached, together, for Jim to get a vasectomy (he just hadn't made the appointment yet). From the kids' bedroom floated the sounds of Maddie's early morning chatter as she and Jimmy began stirring. Nothing and everything had changed.
That evening, Jim stopped at the florist shop by his office. Michelle had never liked getting flowers; he knew that. A short-lived waste of money, she always joked. But when he put this bouquet in her hands, the tears that filled her eyes were different, somehow, from the morning's. Jim had deliberately picked five long-stemmed roses: two red ones, he said, for him and Michelle, three white roses for the children.
His Place, His Pace
Jimmy is dancing. It's a kind of hop-step, a jig in which he stamps his stockinged feet sporadically and clasps and unclasps his hands. He has an audience, a ring of cross-legged grown-ups and kids sitting on a bright blue carpet, clapping a lively beat, cheering him on.It's circle time at Whole Children, in Hadley, Massachusetts, a place where Michelle and other parents of children with special needs find common ground. For Jimmy, it's a place where everything moves at his pace. Of the handful of children in the circle, several fall somewhere on the autism spectrum, and a number have physical delays that make it hard for them to control their bodies.
Through the din of clapping and singing, teacher Christine D'Agostino asks brightly if Jimmy would like a partner. Jimmy immediately points to 6-year-old Madison. She's an exuberant slip of a girl, with silky blond hair, wearing a flouncy flowered shirt. Madison jumps up, face alight and arms akimbo, and the pair dance face to face in a hula hoop placed on the floor. They're old friends.
Like Jimmy, Madison was born with a rare chromosomal disorder, in her case Emanuel syndrome. Also like Jimmy, she cannot talk and has trouble directing her physical movements. She is a bit more outgoing than Jimmy. His autism tends to draw him toward private pursuits like computer games and books. She's more apt to make eye contact, to tune in to others.
Apart from that, Jimmy and Madison navigate the world in such an uncannily similar way that their parents bonded as quickly as the kids did. "Madison was more like Jimmy than anybody else," says Michelle. "Everything we were dealing with, they were too." Lisa and her husband, Gregg, share tips with Michelle and Jim on all sorts of things: toilet training, adaptive tricycles, therapies. Inspired by Jimmy's success using his talker, Lisa and Gregg are trying to get one for Madison. The two moms even joke about buying adjacent houses when the kids are grown — with an in-law apartment in between for Madison and Jimmy. For now, they meet at Whole Children.
"This is one place Jimmy isn't so different," says Michelle. From the first, "it felt like home." Michelle has joined the center's board of directors, and she's bent on starting a branch in Springfield, closer to her home — and accessible to many more families.
This activism surprises even Michelle. During Jimmy's early years she studiously avoided other families with kids like her son. She waited eight months to call the other family in town whose older child shares his rare chromosomal disorder. "I was terrified of seeing 9p minus in the flesh," she says. But now, she declares, "my biggest asset is networking." Networking has always come naturally to Jim. Friendly and unassuming, he grew up in East Longmeadow and knows the region's movers and shakers. This past spring he joined the board of The Association for Community Living, which helps those with developmental disabilities. People are still buzzing about a speech he made at the association's fund-raiser kickoff. He talked about his overwhelming first days as Jimmy's dad, and how he asked the doctor three questions: Will my child go to college? Will he play sports? And most important: Will he be able to love? The doctor said, "It all depends."
For all our children, Jim told the crowd, it all depends — on how well their interventions and therapies work, how much they are accepted in their schools and communities, whether they get the support they need to grow and connect. There wasn't a dry eye in the house.
Michelle's more a doer than a speaker. Last summer she set up a soccer clinic for kids with special needs — Jimmy proved surprisingly good at dribbling the ball. She's also helping launch an after-school program for kids like Jimmy at the Springfield Jewish Community Center. And she is part of a new special education parent advisory council in the Longmeadow schools.
It's a lot. And truth be told, this pregnancy (with its morning — and afternoon and evening — sickness) is slowing her down considerably. Still, "you can sit there and complain about not having these things available for your child," says Michelle firmly, "or you can do something about it. If it wasn't for those parents before me and Jim, society might still believe that the best place for Jimmy is in an institution."
In Public
If the Foards are now so at home in the special needs community, why are they sending Jimmy to public kindergarten? To a place where he will have to work so hard to keep up, to a class in which he's the only kid who can't speak?The short answer comes from Michelle: "The world is not going to accommodate Jimmy. He's got to learn to accommodate to the world." So far, Jimmy's been successful in an integrated preschool. Moving on to kindergarten seems a logical next step. Jimmy could shine there, after all; the focus is on letters and reading, two of his passions. Jimmy appears to have an academic bent, easily glimpsed in his eagerness to play computer learning games. But Michelle worries he may fall behind when it comes to writing. "He hates to hold a pencil," she says. "He won't even color a picture."
Michelle has worked to ready him for the demands of kindergarten by finding safe places (like Whole Children and a music class for autistic kids) where Jimmy can master skills at his own speed before trying them with his typically developing peers. He has learned, for example, how to take turns, catch and throw a ball, and play simple childhood games. Still, Michelle brims with questions: Will Jimmy's kindergarten teacher understand him? Will she create an environment in which the other kids accept him? What if he just can't keep up? Might he be happier and achieve more in a specialized school? Then again, would a specialized school harm his chances of functioning in society? The pros and cons spool on and on. Says Michelle, "I don't want to screw up."
The First Day
A mild September sun peeks through the morning fog on day one of kindergarten. Jim, Michelle, Maddie, and Jimmy's one-on-one aide, Amy Farmer, all walk alongside him, a bit stop-and-start as they downshift to match his speed. There's a big cement staircase to manage, just off the parking lot. Jimmy didn't walk until he was almost 3, and just months ago, after he took a spill with his father on the stairs in their new house, he went on a short-lived strike, during which Jim had to carry him up and down the flights.Now he passes his dad and takes the railing in one hand. He climbs the steps by himself, slowly but surely — left foot up, right foot up, left foot up, right foot up.
Jimmy heads inside with Amy, looking every bit the typical kindergartener in his sneakers, jeans, and white "Soccer Champion" T-shirt. The rest of the family follows close behind. Next to the kindergarten room is a row of shiny blue lockers. Jimmy quickly finds the one with his name. Amy helps him open the door, and he plunks his lunch sack inside. Jimmy spies a small picture of Mike, the one-eyed guy from Monsters, Inc., taped to a neighboring locker. He points excitedly, then reaches out to touch it as Amy coaxes him on. They're running late now. By the time they reach the class, circle time already is starting.
Jimmy and Amy join the other kids on the floor. His jeans hike up as he sits, and now the kids can see his ankle braces. Rushing to get Maddie to her first day of preschool at another school, Jim and Michelle resolve to make a quick getaway. They wait a bit to be sure their son is okay — he seems fine — and then they wave and blow good-bye kisses. To Amy's amazement, Jimmy blows a kiss back without a whimper. Even when one of his classmates starts sniffling — before, a surefire tears trigger — he stays calm.
As circle time draws to a close, teacher Sandy Passmore gently lets the remaining parents know it's time to go. "If you have someone special here, you can go and give them a hug and say good-bye," she tells the kids, glancing warmly around the room. "And if you don't have anybody here," she adds, "you can come and give me a hug." Jimmy pushes himself up to standing, takes a few steps, and folds his arms around her.
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