A Different Kind of Normal, Part 2
Written By Charlotte Meryman
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In so many words: Jimmy Foard's parents, therapists, aide, teachers — everyone in his young life — try to get him to do one thing: speak.
The series so far: In Part I, we met the Foard family — mom Michelle, dad Jim, son Jimmy, 4, and daughter Maddie, 2. Jimmy was born with Alfi's syndrome, a rare chromosomal disorder in which part of the ninth chromosome is missing, and shows about half the signs for autism. As a result, this gentle, bright boy must grapple with many profound challenges. They are physical: Low muscle tone frustrates his ability to walk, move, and speak. And they are social: Bonding with other kids doesn't come easily. Part I followed Jimmy through the minefields of an average birthday party and also offered glimpses of the roller coaster of his birth and first years. All parents, of course, brave their children's trials and savor their triumphs. But to be Jimmy's parents is something else again. You learn to embrace "a different kind of perfect," as Michelle puts it, and "a different kind of normal."
"Speech is civilization itself," as the novelist Thomas Mann once said, grandly. And right now in one tiny corner of civilization — the Blueberry Hill preschool in Longmeadow, MA — a dozen fidgety children are chattering away. It's snack time. Ten boys and girls slip into blue plastic chairs around two low tables. Munching apple spirals and sipping juice, they get silly, issue various news flashes, and compare their plans for recess. The afternoon sun lights up their faces, spilling over a riot of brightly colored toys, games, blocks, easels, and books.
At one table, 4-year-old Jimmy Foard climbs wordlessly into his special chair. It's a sleek Scandinavian number with an adjustable seat and footrest to boost his braced ankles and keep him from slumping. He chews his apple pieces silently, poker-faced. To his right a little live wire named Ashley, with blond pigtails and chipped pink nail polish, watches him with interest. She turns to his ever-present aide, Amy Farmer ("Miss Farmer" to the kids), and considers the pair for a moment. Then, with vintage preschooler bluntness, she blurts: "Why can't Jimmy talk?"
Farmer doesn't miss a beat. "He can say 'mama,'" she counters breezily. "He can say 'daddy.'"
"But that's the only thing he can say," Ashley persists.
"He can use his signs to tell us things," Farmer says. She means his very rough American Sign Language, understood only by a close few. "He can say 'more.'" She pointedly offers Jimmy the platter of apples and asks if he'd like another serving. This is the sort of dance they perform countless times a day, all in the name of engaging, demonstrating, practicing.
Dressed today in jeans and a black sweater, her short dark hair blown neatly away from her face, Farmer has worked with children with special needs for 16 years and with Jimmy since he started at Blueberry Hill almost two years ago. Her manner is strict but kind. That kindness can be a burden. She got too attached to the first child she worked with, for four intense years, and vowed never to remain with a student that long again. It hurt too much (and, she feels, kids grow from working with new aides). So she tries to stay professional: caring but detached. It works for her and for Jimmy too. "Amy has had a huge impact on Jimmy," says Michelle. "She doesn't baby him. She makes him do everything by himself." And so, characteristically keeping the bar high, and with Ashley and Jimmy in her sights, Amy holds the apple platter to one side and scootches Jimmy's "talker" (a voice-enhanced, handheld computer) in front of him. He quickly takes the hint, peers intently at the small screen, and repeatedly presses it to flip to the icons he wants. Found it. "Yes. Please," says a fractured, monotone male voice. "Ap-ple."
Ashley nods her approval, but she's not sold yet.
How could she know that to "talk" through a machine is a marvel for Jimmy? It ranks so much higher on the communications food chain than his binder of card-stock icons or his scant sign language. But the talker is still just another rung on the ladder. The ultimate goal is to get Jimmy to talk — on his own, discernibly, from the heart. "Say 'more apple,'" Farmer coaxes Jimmy. "Tell me. Say 'mmmore apple.'" His brow furrows as he struggles to make his mouth comply. "Mmmm," he manages at last.
It's enough. "Jim-Jim-vree!" Ashley squeals, and breaks into a delighted grin. Jimmy looks eagerly to the apples, which now land in front of him.
The Olympian
To raise a child with special needs in our interventionist era is to sign up for a schedule as packed as that of an Olympic athlete in training — with just as many handlers. Every single day Jimmy is working long and hard with someone: Amy Farmer; his preschool teachers; his physical, occupational, and speech therapists; his gymnastics instructor; and, of course, his parents.
The overarching challenge in this never-ending story of therapy sessions is to doggedly, fixedly strengthen Jimmy's low muscle tone and ease his troubles with what's known as motor planning. That's the process by which the brain takes in information and tells the body what to do: put on clothes, wash hands, climb, catch. Jimmy must train for months, for years, to master such tasks, breaking them down into their smallest steps and practicing them over and over until his muscles memorize the movement.
So he gamely bounces, balances, and tumbles at gymnastics. He reaches, throws, draws, and builds at physical and occupational therapy. His dad throws in plenty of roughhousing. All of this activity is crucial for his coordination, but the Foards have another glittering prize in mind too. Michelle read somewhere that "movement creates speech." And, like many parents of children with special needs, she'll try anything from the "can't hurt, might help" category.
Jimmy's speech therapist, Hillary Jellison, believes there may be something to the idea. "The whole thing with speaking is you need that breath support," Jellison says. "So to build those muscles and to get moving, that's really going to help Jimmy." Not to mention, she adds, that when he's doing what's inherently fun — jumping on a trampoline, knocking down bowling pins — he's more motivated to try to talk, and thereby share the fun he's having. "It's like a puzzle," says Jellison of working with Jimmy. "We're all trying to find out what that missing piece is so he can express all of his thoughts." And so they keep looking.
The Bookworm
The aging cinderblock walls are painted white, and a large mirror looms by the table where Jimmy now sits at Holyoke Medical Center's Speech and Hearing Center, not far from Longmeadow. Jellison sits catty-corner to Jimmy in the tiny room. "A says aaah," she begins, picking up a small hand mirror and gazing into it as she opens her mouth wide. The silver surface reflects her friendly young face — she's just a few years out of graduate school — her hair pulled back with a headband, and her wire-rimmed glasses. She tilts the mirror toward Jimmy and places her finger on his chin, gently pulling it down as they say aaah together. Then she lays the mirror down. "H for huh," says Jellison, holding her palm in front of her mouth to feel the puff of breath and eagerly inviting Jimmy to do the same. They soldier on through E (eh as in "egg") and F (fff as in "fish"), Jellison ex-ag-ger-a-ting her mouth movements as she pronounces.
But Jimmy isn't really there. He keeps trying to peer past her toward a book she hustled off the table a few minutes ago when it proved a distraction. It's something about a jaunty bear. Jellison switches gears and thinks: teachable moment. She slides a large index card in front of Jimmy and writes across it "I want book" in careful print. "Let's read!" she suggests merrily, dropping her finger below each word as she speaks it out loud: "I-want-book." Then she asks, "We want to get the bear book; what do we have to do?" She answers her rhetorical question with a new card, on which she writes and then says "Open book." And Jimmy does exactly that.
James Frederick Foard III is a bona fide bookworm. He adores being read to and will happily spend hours lost in the pages of children's books, grown-up magazines, even the phone book (he's infatuated with the orderly lines of type on the white pages). He has a thing for signs too, especially Stop and Exit, and insists on having all read to him. At age 4, Jimmy already recognizes "tons" of words, Michelle says.
But while Jellison finesses some reading into most sessions, to play off his passion and help him learn his letters, she knows that a mere love of words can't push Jimmy's mouth to actually say them.
It's been such a long haul.
When Jimmy was 2, he'd work at home with his mom, sucking a special straw and blowing on a whistle to help bolster his oral muscles. Michelle, Jim, and Jimmy will often make goofy faces in the mirror, sticking out their tongues to the left and right, and trying to lick their noses like a lizard. Jimmy is especially taken by that last game, but it can't hold a candle to the exercise Jellison has saved as the fireworks finale to today's session.
With a sly smile she unwraps a bright green lollipop. Jimmy's blue eyes brighten. What 4-year-old wouldn't perform for candy? Especially knowing it'll go home with him — along with a bonus pop for Maddie. "Can you stick your tongue out?" Jellison asks. Jimmy opens his mouth and she rolls the lollipop inside. "Let me hear," she insists, clicking her tongue against the roof of her mouth until Jimmy does the same. Then she tips the lollipop against the left side of his mouth. "Can you put your tongue over here?" she asks. He does. They repeat the exercise on the right side and on his upper lip. "Nice job!" she exclaims. Thinking he's kept his end of the bargain, Jimmy reaches for the lollipop. "Oh," says Jellison in mock surprise, "mmore pppop? Let me hear." She pushes until Jimmy manages mmm and ppp. Then the lollipop is truly his.
The Littlest Hacker
Michelle is torn. Here she is on the phone with a tech support rep from DynaVox, the company that makes Jimmy's talker, and she's not sure which feeling ought to dominate: pride or exasperation. It seems this 4-year-old of hers is a hacker.
Somehow, Jimmy has figured out how to exit the speech software, get into the underlying handheld device software, and record snippets of his own voice using the personal memo feature. "He just pushes a lot of buttons and then he knows how to do it again," Michelle says into the phone.
"Wow!" the guy responds in amazement. "There are only two ways to get out of the speech function, and your son just figured out a way I didn't know about. You've got a little genius!"
Michelle feels a flush of happiness. People "discount his abilities until they see it for themselves," she explains. "His physical therapist says, 'He is so smart, Michelle. You need to make sure people know that.' I'm constantly quizzing him in front of people so they understand, 'Oh, my gosh, he does know what's going on.'"
These days, that's a lot more obvious to everyone. If speech is civilization itself, Jimmy has yet to fully join in. But his growing tool kit — sign language, gestures, icons, sounds, and now the talker — is finally giving him a way to share what's happening inside his head. Come to find out, the boy has a sense of humor. He gets a big kick from hitting the talker's sentence bar without clearing it first, so it spits out a poetry slam of all that's been said lately. And instead of saying good-bye via the "good-bye" icon, he punches "see you later, alligator" instead. Michelle has even caught him teasing Maddie, just like any other sibling.
It's all cracked open a new window of hope. In the early years, Michelle cried every time she thought about Jimmy's future. Not anymore. Now, she says, "I see more potential than heartache."
Read part 3 of the series: Jimmy's life at home.
