by Joyce Lamb)
Cammie McGovern, author of Say What You Will, draws on real life for her new novel (coming June 3) and shares here how she and a group of other mothers of kids with disabilities formed the organization Whole Children.
Cammie: When you have a disability, or a child with a disability, you already know the struggle of forging real friendships with the non-disabled world. For teenagers, the divide can be insurmountable. In my novel Say What You Will, Amy is a highly intelligent high-school senior with cerebral palsy, which forces her to use a talking computer to communicate. Though she has excelled in the same classes as her peers all her life, she has never made a genuine friendship with anyone until she talks her parents into hiring a few classmates to be her aides at school. As a connection grows with Matthew, a fellow senior with his own hidden disability, she learns for the first time about the thrill and heartache of a friendship that blossoms into romance.
As the parent of a 17-year-old son with autism, I know all too well about loneliness and isolation for kids with disabilities. As is often the case with kids on the autism spectrum, his communication may be halting and awkward, but he is, at heart, a social creature who delights in activities and the company of others. The best thing I did in the lonely, hard years after Ethan was first diagnosed was connect with a group of mothers of kids with disabilities and start an organization called Whole Children. Originally begun as a place for our kids to take movement-based classes after school, we were shocked to discover the overwhelming interest and the startling number of families in the same situation we were: at home alone with a child who desperately wanted to socialize but had so much difficulty doing it. With the help of many families and enthusiastic parents, Whole Children grew into a year-round resource center that offered a wide variety of after-school, weekend, and vacation programs in music, art, cooking, martial arts, and theater. For my son, it's become a home away from home, a place where he can push himself within a safe environment, and — more importantly — be himself.
This summer Whole Children will celebrate our 10-year anniversary. Our children, who were 8 years old when we started, are turning 18. Check out a video we made celebrating Whole Children and this book with a gorgeous song by Justin Hines. If you're curious, you can see a sweet shot of my son and the girl who partly inspired the character of Amy at the 2:41 mark.
Here's an excerpt from Say What You Will:
Excerpted from Say What You Will by Cammie McGovern with permission from HarperCollins. Copyright © 2014 by Cammie McGovern. All rights reserved.
For Amy, being friends with Matthew felt like being on a roller coaster. He was so many things: handsome (far handsomer than he had any idea of, with beautiful blue eyes and a wonderful smile), smart, funny, and surprisingly gallant. He was her only peer helper who stayed with her after school to wait for her mother's car to pull up. The only one who carried her backpack to the trunk and knew how to fold her walker flat with two moves. More often than not, he held open the car door, and recently he had begun a heart-stopping new flourish: buckling her seat belt around her. He'd done it twice now, which meant twice his curly hair was bent over her waist while one hand touched her hip in search of the buckle.
"There we go!" he'd said last time, smiling and a little breathless when the job was done.
He had no idea how wonderful he was. How his hands were so beautiful she could hardly look at them. How his truest smile was crooked and lifted higher on the left side than the right, which made her feel like he might understand her better, her hemiplegic face that was all crooked half smiles, too.
But it couldn't be denied. He was also slightly crazy.
Maybe more than slightly.
Reading the book she'd found at the library convinced her of two things: (1) It was a pretty serious disorder, and (2) Matthew definitely had it.
The case studies in that book had people whose whole lives got destroyed by compulsive obsessions. Lawyers who lost their jobs because they couldn't stop taking showers. Teachers who left classrooms unattended to run home and check their stoves. On one level, Amy was grateful for this side of Matthew. Without it, she knew he never would have been her peer helper. He'd been normal once, with friends in the smart crowd who went to dances and afterschool activities planned by committees. She'd never done any of that, but she remembered seeing Matthew at tables in middle school, selling raff le tickets and carnations. Now she'd learned he wasn't kidding that first day he worked with her. He said hello to no one. He spent passing periods in the hallway too busy tapping lockers and whispering to himself to notice the people who tried to say hi or catch his eye.
Except the days he was with her.
It was electrifying the way he watched her so carefully that he forgot himself. He didn't mumble or tap. Mostly he didn't do anything strange; instead, he focused on details.
He fixed a loose screw on the handle of her walker. He found better straws in the cafeteria for drinking her Boost shake. He thought about her and a million tiny ways he might make her life easier. How could she not love him?
Because she did, she saw: he didn't want to talk about OCD.
It made his fingers twitch and his eyes f lick nervously around the room. It made sweat break out on his upper lip. Instead of talking about it, she asked him if he would mind joining an after-school club with her that met twice a week. The others couldn't stay after school, but Matthew, with no sports, no other jobs, and no place he had to be, could.
The day of the first meeting, they walked together to the yearbook room.
"You're really interested in yearbook?" he asked.
"YES. I LOVE DESIGN AND LAYOUT. THAT'S MY THING."
"Wow," he said. "I thought Simon and Garfunkel was your thing." Ever since he'd told her about the list, he brought it up every chance he could.
She pressed the Pathway button with her fake laugh. "HA-HA."
Yearbook was filled with mostly younger kids who already knew one another. No one looked up or acknowledged them when they walked in. "I have to be honest with you," Matthew whispered as they moved to a table in the back. "It's been years since I even bought a yearbook."
"WELL, THAT'S WHERE YOUR PROBLEM IS." Amy turned her computer down to a whisper. "YEARBOOKS ARE CRUCIAL TO POPULARITY."
"Right," he said. "I once had two girls write on the same page that I had a really sweat personality."
She laughed. She liked the way he said sweat. "GREAT MINDS THINK ALIKE, I GUESS."
"Sweat ones, too."
They weren't put on layout because apparently everyone wanted layout and only people who'd been working for a year on yearbook got to do layout. They were welcome to do ad sales, the faculty advisor said, handing them a packet.
"You call the businesses listed there and see if they're willing to sponsor again." Too late, the teacher realized "calling businesses" might be a mistake for them. "Maybe one of you could do the talking," he said, and awkwardly began to shuffle through some papers.
They returned to the back table, where they sat—again—by themselves. Around them everyone else worked busily. Finally Amy whispered, "WELL, I'M PRETTY SURE HE MEANT I SHOULD DO THE TALKING, DON'T YOU?"
Two days later, they went back again. They sat at the same table and again, no one acknowledged them.
"I think you're definitely right about the popularity thing," Matthew whispered. "I already feel it working wonders."
If Matthew hadn't been there, making his jokes and their calls to businesses, she wouldn't have lasted. But with him, it didn't matter that no one talked to them, including the advisor. They had each other. Matthew made up voices to use on their calls. She typed up scripts for him to say. Instead of focusing on ad sales, they tried to get people to stay on the phone as long as possible. He talked to hair salons at great length about their whimsical names. ("Hair Today, Gone Tomorrow is so bold," he said. "The implication that everyone walks out bald isn't a problem, I guess?")
Soon they made fewer calls and spent the rest of the time talking. No one seemed to notice or, if they did, care. It gave them what Amy really wanted, more time to talk. To tell each other stories, even if it took a while because Matthew was shy and Amy had only one hand to type with.
They talked about the other peer helpers some. Matthew told her he'd been friends once with Sanjay, a long time ago. "It was in preschool, actually. He was the person who told me there was no such thing as a nap fairy who came in and put stickers on children who were asleep. He said it was the teachers wanting the kids to sleep so they could get a break."
He also told her he didn't know Sanjay anymore. Even during the training week in August, neither one of them mentioned preschool.
"SANJAY'S A LITTLE FOCUSED ON OTHER THINGS NOW."
"HE CARES ABOUT GIRLS AND POPULARITY. A LOT." Out of all her peer helpers, Sanjay was the hardest for her to spend all day with. No matter who he was with, he looked over their shoulder to see if someone better was in the vicinity. He talked a lot about the popular crowd—ostensibly making jokes, but they were the kind of jokes that made it clear he was desperate to be one of them. Sometimes it sounded like maybe he was. "That's so Lisa," he'd say after talking to one of the cheerleaders for two minutes. "She can't do Spanish at all. I mean nada." Occasionally pretty girls sat next to him in the cafeteria and said, "Hey, Sanj." Sometimes they ate his French fries for a few minutes while they talked to him.
"And Sarah?" Matthew said. "What about her? What's she like?" As he said this, he peeked up at her, a little nervous.
"No reason. Just curious."
"DO YOU LIKE HER?" Amy tried not to ask questions like this but she couldn't help it. Her hand moved faster than her brain could stop it.
"No. I mean I used to have a crush on her, okay. Sort of. A little." His face was bright red. He couldn't stop smiling.
"A long time ago. Like ninth grade. It was dumb."
Amy liked Sarah, but knew her the least of all her peer helpers. She knew her dad was Mr. Heffernan, their seventh- grade science teacher, and she knew her mother died of cancer because it happened when they were all in seventh grade and Mr. Heffernan left school for almost two weeks. Beyond that, she couldn't say much. Sarah seemed serious about getting into a good college. She was pretty in a way that Amy didn't think got noticed much in high school, but maybe she was wrong. Maybe Matthew had noticed.
He finally stopped blushing long enough to explain, "Her mother died around the same time my dad moved out of the house, saying he had fallen in love with someone else. I guess I got it in my mind that we had a lot in common."
"DYING ISN'T THE SAME AS GETTING DIVORCED."
"No, I know. I just used to watch her. To see if she was holding up. If she looked like she'd been crying. Stuff like that. It was stupid."
"DO YOU STILL DO THAT?"
"No. I mean, a little. I don't even know her, really. You know her better than I do at this point."
Amy knew this shouldn't bother her as much as it did. We're friends, she told herself. This is what friends do. They have crushes on other people and they tell their friends about it. That didn't mean he was going to start dating Sarah. It didn't mean he'd signed up to be a peer helper so he could meet Sarah. The minute she thought of this, though, she couldn't stop her hand from typing: "DID YOU SIGN UP FOR THIS SO YOU COULD MEET HER?"
"No. God, Amy. I didn't even know she was doing it."
"BUT YOU SAW HER AT THE TRAINING SESSION AND THOUGHT, I CAN'T BELIEVE HOW LUCKY I GOT?"
He laughed and blushed again. "No." But it was obvious. He did think that. She could tell.
She dropped the subject completely and went home that night to think it over. Yes, she was jealous. It was infuriating that someone as sweet as Matthew, with such a good heart and so many problems to wrestle with, would waste his time having a crush on Sarah. Not that anything was wrong with Sarah—she just wasn't worthy of him. She wasn't as sweet as Matthew or as considerate. Once Sarah told Amy she didn't expect to keep in touch with anyone from high school after they graduated. "I feel like I'm kind of biding my time, waiting for better things," she told Amy. Amy knew what she meant: better classes, better friends, better boys. She didn't want Matthew to have a crush on Sarah, because Sarah would probably brush him away without thinking twice. "I'm kind of busy these days," she'd probably say, or even worse: "I'm not really into high-school guys."
There was also, growing within Amy, a feeling so foreign she almost didn't recognize it. Why doesn't he notice me that way?
She wasn't sure exactly what she wanted or could reasonably expect. Kissing was probably too much, of course. But sometimes Matthew would look at her, or put his hand somewhere surprising—the small of her back, or the inside of her wrist—and she'd feel an electric thrill. Once there was even a spark and they looked at each other. She wanted to say, There. Didn't you feel that?
But those moments always passed. He'd shake his head and change the subject.
At their next yearbook meeting, they talked about therapists she'd had in the past: "MY ALL-TIME FAVORITE WAS AN OCCUPATIONAL THERAPIST NAMED CONNIE. SHE WAS THE FIRST PERSON WHO TOLD ME ABOUT SEX."
This time Matthew didn't blush so much as break out in a cold sweat. "What did she say?"
"NOT THE GRAPHIC DETAILS. SHE SAID GIRLS ARE TOLD THEY'RE SUPPOSED TO SAY NO, BUT IT GETS CONFUSING BECAUSE THEY WANT IT, TOO. SHE MADE IT PRETTY CLEAR: IT'S OKAY FOR GIRLS TO BE INTERESTED IN SEX."
"How old were you?"
"FIFTEEN, I GUESS. OLD ENOUGH. SHE SAID I SHOULD WAIT UNTIL I LOVED THE PERSON OR ELSE UNTIL I WAS REALLY, REALLY SURE I WANTED TO HAVE SEX."
"She said that?" He laughed nervously as if maybe she was joking.
"YES. WHY SHOULDN'T SHE? DO I LOOK LIKE SOMEONE WHO SHOULD NEVER TALK ABOUT SEX?"
"No. God, Amy. You don't have to keep saying that word."
"Because." He looked around. "We're supposed to be selling ads, right?"
"RIGHT," she typed. "SORRY."
Matthew didn't understand what Amy was saying or why some therapist was telling her to have sex when she was fifteen. It made no sense. He was grateful that Thanksgiving came the following week and meant all after-school clubs were canceled.
He spent Thanksgiving with his grandmother, who grew up on a cattle ranch and understood cows better than she understood people. They might be stupid, she said, but at least cows behaved in predictable ways. People, not so much. His grandmother once told him that she was lucky that her husband drank himself to death. Now she was free to do as she pleased and say what she thought. Which she did. Before dinner, Matthew overheard his grandmother ask his mother: "Are things better? Has he got any friends this year?"
He was supposed to be watching a parade on TV, but he turned the volume down to hear his mother's answer. "Yes, Mother, he does. He was chosen to work with a disabled girl, and he's been doing that mostly. I think it was an honor, actually. She asked for him specifically."
Amy did ask for him specifically—it was true—but he had no idea how his mother knew this. It made him nervous. Like maybe people knew more things than he realized. He couldn't hear what his grandmother said.
"We haven't talked about that," his mother said. "I'm trying not to put pressure on him."
Mumble mumble mumble.
"That's your opinion, Mother. Not everyone is ready for college the minute they graduate from high school."
This was a surprise. His mother had been worrying about what he'd do next year?
"We've talked about him taking a year off, maybe."
(No, they hadn't.)
"Maybe he'll get a job and save some money." (He would? What job?)
He strained to hear what his grandmother was saying, but he couldn't.
"All I know is that working with this girl has been good for him. It's made him think about someone else's problems. He's good at it, Mother. I wish you could hear him talk about her."
Suddenly he felt even more embarrassed. What had he said?
"He really likes her. I can tell. And she likes him. It's very sweet. They're friends. I don't know what she's doing next year, but I assume if she's going to college, it would be some correspondence situation. Maybe he could try something like that."
As disorienting as it was to overhear this discussion, he had to admit, he didn't mind the idea of living at home and taking college courses online next year. That solved the problem of telling people what his plans were. He had never asked Amy hers because he didn't want to pretend he had answers himself. Now maybe he could. In the car driving home, Matthew checked his phone and, to his surprise, found a text from Amy.
Feel like barfing but thinking of you. Don't know why the two together. Happy Turkey day. Heart A.
He laughed out loud, surprised at how relieved he was to hear from her. They'd moved past the awkwardness of their last conversation. They could keep going, apparently, the way they had been. A few weeks earlier they'd started a joke about the girls who wore I Heart NY shirts. He wrote her back:
Grandmother's turkey dry as the suede fringe on my cowboy vest that still hangs in my guest bedroom here. Real studs. Fake suede. Maybe I'll show you some time. Hey, thanks for writing. M.
With Amy, jokes were easy, he realized. The other stuff, not so much.
He thought about what his mother had said. He wished he could tell Amy somehow. A few minutes later, he texted again:
Got to overhear my mother's opinion of my job with you. Apparently she approves. We both give thanks that your battery pack needs to be changed.
He got this back:
My battery pack is thankful for you, too.
As they got closer to Christmas, Amy told Matthew that she'd thought about buying him a Christmas present but decided against it.
"That's fine," Matthew said. "I'm not a big present person." He wasn't a big Christmas person, either (since it always involved a fake, jolly dinner with his father's new family), but obviously Amy, with her walker decorated in silver-and-gold tinsel, was.
"INSTEAD I'M GOING TO GIVE YOU A POEM."
"A GREAT, GREAT POEM. IT'LL KILL YOU WHEN YOU READ IT."
"All right. I mean, I hope it doesn't kill me, but okay." The poem was by Yeats. She emailed it to him, then printed out a copy she presented him with the next day at school:
Had I the heavens' embroidered cloths,
Inwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light,
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.
"DID YOU LIKE IT?" she said, first thing in the morning.
"Oh yeah. It was great. Except you're not poor." He didn't know this for sure. He'd never been to Amy's house, but the clues were all there: the car her mother drove, the cost of her Pathway and the rest of her equipment. Plus the fact that her parents paid him sixty dollars every other week.
"IT'S SYMBOLIC. I'M POOR IN MANY WAYS EXCEPT MONETARILY."
"Oh." He nodded and smiled. "Okay."
He had liked the poem a lot—enough to memorize it, which wasn't necessarily significant. Sometimes his brain inadvertently memorized songs and poems he hated, but he did like this one. The problem was, he couldn't think of anything to say about it. "I like that it was you telling me to walk carefully." Right away, he knew this wasn't the right thing to say.
She cocked her head, and stared at him. "THAT'S ALL?"
"I'm not good at poetry, Amy. I'm not sure what else to say."
"DON'T YOU HAVE ANYTHING FOR ME?"
Now he understood his real mistake. She'd set this whole thing up so they could exchange presents without worrying about his having less money than she did. Why didn't he understand these things sooner?
"I don't have anything. I'm sorry." He felt tongue tied and awkward. It was a week before school let out for Christmas vacation. Should he run out and get her a present now? Wouldn't that look stupid since he hadn't thought of it himself?
He put it out of his mind because he felt like he had other, bigger things to worry about. He hadn't asked her yet about her college plans, but he would soon. He'd already decided to sign up for whatever online college program Amy picked for herself. If they did it together, he'd point out, they could share books and laugh about the crazy people in their discussion groups.
For Matthew, it was both a relief to imagine and a little embarrassing to bring up. He didn't want her to know that he hadn't applied to any schools. That he downloaded some applications that made him too nervous to look at. That without this vague idea of doing something with her, he had no plans for next year. None.
Now he sat beside her at lunch. She'd been wearing a Santa hat all day that everyone commented on, the way everyone commented on everything Amy wore. He could feel her expectation, like she was waiting for him to say something. It made him mad. "I told you I'm not that great a reader. Poetry especially. I always feel like I'm missing the point."
She waited a long time, though he couldn't think of anything else to say.
"MAYBE YOU ARE," she finally said.
Find out more at www.cammiemcgovern.com.