“Mom, make him stop!” shouted Alexis. “I wish he would stop it!”
“He’s just being nice to the hamster,” Megan said in defense of the boy. Justin seemed a little erratic, and rambunctious maybe, but he didn’t seem like a bad kid. “You should show Justin how Zippity runs through the maze,” Megan suggested, trying to make things better for Alexis. “I think he’d like that, don’t you? Watching the hamster run through our maze?”
“No, I don’t!” snapped Alexis.
Megan backed off. She knew better than to try to talk sense to any kid who was in the middle of having a tantrum. Still, she had to say something.
“Right,” said Megan. “It’s not a good time for me, either. My dad is waiting in the driveway. You probably saw him sitting in the car. But before I go we should decide when we want to run the experiment. It’s already Saturday and we only have until Monday to find out if Zippity likes the purple over the red and the blue.”
Alexis had thrown herself onto the sofa in a serious sulk. Her arms were wrapped around a pillow that she clutched to her chest, and she refused to look at anyone. “I don’t care about the purple,” Alexis shouted into the pillow. “I don’t care about science! I don’t care about the science fair!”
“Maybe it’s a bad time, Megan,” suggested Alexis’s mother. “Maybe you can come over tomorrow and run the hamster through the maze.”
“Maybe,” said Megan, although at the moment it didn’t seem very likely at all. Justin was raising a ruckus and Alexis was throwing a tantrum—and Megan certainly knew when she wasn’t welcome.
She walked to the door and nodded slightly at Mrs. Powell as a way of saying so long. She flipped her hand toward both Alexis and Justin as a simple wave good-bye. Then Megan headed outside.
• • •
“Alexis wasn’t there when I got there but then she came home and totally freaked out!” Megan explained to her dad in the car.
“What do you mean, ‘freaked out’?” asked her father.
“She freaked out!” Megan insisted. “Screaming and yelling and crying. I didn’t have anything to do with it.”
“You didn’t do anything to upset her?”
“Dad,” Megan began, as though the idea were simply preposterous, “I was only playing with her kid brother—who’s nice but a little weird—and Alexis walked in and—”
“What do you mean ‘nice but weird’?” asked her dad.
“He’s just weird, Dad,” Megan repeated.
“I don’t like that word,” said David. “People aren’t weird. People are different.”
“Okay, okay,” Megan said impatiently. “He’s different, Dad.”
“Say it like you mean it,” said David. He continued to gaze down his nose at Megan until she felt obliged to repeat her father’s saying in a more even tone of voice. “Okay, you win!” said Megan. “ ‘People aren’t weird. People are different.’ ”
“And how is he different?” asked David.
“He’s ausisitic?” said Megan, trying to remember the word that Alexis’s mom had used. She tried to spell it with the manual alphabet but soon gave up. “I don’t know how you spell it,” she said, “but that’s what Mrs. Powell said about Justin. She said he’s ausisisistic.”
“You mean autistic?” asked David.
“Autistic!” Megan repeated triumphantly. “That’s what he is!”
“Ohhhhhh,” said Megan’s dad, taking a new handle on the whole situation. “Autistic.” He spelled the word correctly in the manual alphabet for Megan. It was a common routine for them. Whenever Megan encountered a new word, her dad carefully spelled out the letters with his hand—and Megan had to spell it back. As Megan grew older, the words got more and more complicated.
Reaching into her dad’s line of vision, Megan carefully repeated the spelling back to him. “Okay already, ‘autistic,’ ” she said as she finished the s-t-i-c. “What about it? What is it? What?”
“What do I look like? An encyclopedia?” asked David. He put the car into gear and headed down the street. “Look it up on the Internet.”
“Okay, I will!” Megan snapped with an air of defiance. Then she laughed at her father. “You don’t know what ‘autistic’ is either. Do you?”
“I know what it is basically, but not well enough to offer a good explanation,” said David. “So if you find a good explanation on the Internet, I want you to share it with me.”
Megan looked down her nose at her father and twisted her lips as if to say, “I told you so.”
“At least I can spell it,” he protested.
“All I know is,” said Megan as she settled into the car seat, “whatever ‘autistic’ is, Alexis doesn’t like it. It makes her freak out!”
Megan’s father changed his grip on the steering wheel before he spoke. “Pumpkin,” he began, measuring his words, “sometimes when families have kids with special needs, the special kid puts a certain strain on the moms or dads or brothers and sisters in the family.”
“I don’t understand,” said Megan. She had no idea what her father was talking about and she wasn’t afraid to say so. “I don’t get it.”
“It’s like this,” said her father, trying again. “Maybe your friend Alexis—”
“She’s not my friend,” interrupted Megan.
“She’s the one who’s practically perfect, right?”
“She’s the one,” said Megan.
“It sounds like Alexis likes things to be perfect,” her father continued, “and she doesn’t like it when they’re not. So maybe she has to be perfect not only for herself but also for her little brother, who is maybe not so perfect because he’s autistic.”
“Oh,” said Megan.
“And maybe Alexis doesn’t want other kids to visit her at home,” said Megan’s dad, “because she doesn’t want anyone to see her as anything less than perfect. Maybe she thinks her brother’s autism makes her a little less perfect just because he’s around.”
Megan was quiet for a moment. When she finally spoke, she said, “Well, that’s kind of sad.”
“Yes it is,” said her dad. “But it happens.”
Megan fell quiet again. Then she asked, “Does being deaf make me less than perfect?”
Her dad knew where Megan was headed with her question, but he jumped on it. “Don’t even go there,” he said to Megan. “You’re you. And we wouldn’t want you to be anyone else. We don’t want you to be perfect. We just want you to be you. Being deaf is just one of the many things you are. And in some ways being deaf makes you precisely as special as you are.”
Megan mulled that thought for a moment. Then she spoke. “Okay, and Matt’s my brother, right?”
“Obviously,” said Megan’s dad.
“Okay,” said Megan, working through the formula in her mind. “So does Matt try twice as hard to be perfect because he maybe thinks that I’m less than perfect?”
Her dad chuckled slightly and beat the steering wheel with the palms of his hands. “Matt?” he began. “I wouldn’t call Matt ‘perfect.’ Perfect isn’t such a problem in the Merrill family.”
“Matt? Perfect?” Megan laughed. She rolled happily against the car seat. “Fat chance!”
9
E-mail Me
MEGAN TYPED “AUTISTIC” INTO THE search engine.
The computer thought for a second, and then the screen displayed an orderly list of about a bazillion Web sites. Most of them looked terribly official. Some of them weren’t even in English.
“Oh, brother,” Megan said to herself. “I want an explanation. Not an encyclopedia!”
Megan was alone in the kitchen, perched on a chair in front of the family computer in the alcove. She wiggled the mouse to get the cursor back into the search engine box and reconsidered her search word.
All I want is a site that explains autism to a kid, she thought. That shouldn’t be so hard! Megan blinked once or twice as she pondered the problem, and then she had a terrific idea. She set her fingers
on the keyboard and typed “explain autism to a kid.”
She clicked the mouse again and waited for the results.
This time a much more manageable list of Web sites popped up on the screen. Megan thought one of the listings looked friendlier than the others, because it used the word “kid” several times in the description. Megan fidgeted with the cursor and clicked on the listing. When the Web site opened, Megan was pleased to see that it contained exactly what she wanted. It had photographs of happy people, both grown-ups and kids. Bright-colored boxes contained snippets of information written in words that Megan could understand. She clicked on a box marked simply: WHAT IS AUTISM?
Autistic kids experience the world differently than most kids do.
One reason is because autistic kids react in unusual ways. For example, ordinary sounds might bother them a lot. Simple, gentle touch may feel awkward or uncomfortable.
Another reason is because autistic kids have trouble making connections. Most kids understand that a smiley face is happy or friendly. Autistic kids might not connect a smile with happy feelings. This same confusion can apply to words.
Autistic kids might not connect words with the correct meanings or with any meaning at all. They might know the word “blue” but not relate it to the color blue. As a result, autistic kids can become frustrated by words—and doubly frustrated when they try and fail to come up with the right word to express a thought or feeling.
Many autistic kids need special help in order to communicate.
Megan clicked on the icon to print the page so that she could share this information with her father. The printer jiggled slightly as the paper began to emerge. Megan rapped her fingers lightly against the keyboard. She was glad to know more about autism. Even so, knowing more about Justin’s condition and the situation with Alexis’s family still didn’t explain why Alexis had such a problem with Megan being deaf.
What would Lizzie do? thought Megan. Lizzie was a deaf girl that Megan and Cindy had met at camp the summer before. Megan and Lizzie had spent only a few weeks together, but they had become fast friends in a short amount of time. Megan thought Lizzie was amazing. She was impressed by the way Lizzie could handle herself in any situation. And it was good to have a deaf friend who understood exactly what Megan was going through.
Unfortunately, Lizzie lived an hour away. They had promised to stay friends at the end of camp, but an hour away was too far to visit. Since they were both deaf, obviously they couldn’t talk on the telephone. They had swapped e-mail addresses and screen names so that they could exchange e-mails and send instant messages to each other. Over the holidays, however, Lizzie had contacted Megan using a whole new method of communication.
Megan clicked on the icon to open a window in her instant-messaging program. She clicked on the rubber-duckie icon that was connected to Lizzie’s screen name. Then she clicked on a camera icon at the upper corner of the box.
A tiny hourglass appeared on the screen. It teetered back and forth, marking the seconds as the computer tried to access Lizzie’s e-mail account through the video instant-message window. Megan checked the tiny camera perched on top of her own monitor to make sure it was operating. Green light, go. Everything appeared to be working okay. She pursed her lips and blew on the keyboard to clear away a few persnickety specks of purple glitter she found there.
In a moment another window opened. It was blank at present, but in the upper corner there was a smaller box and Megan could see her own image in it. She waved into the camera on top of the computer—and waved back at herself from the computer screen.
The window went blank for an instant, and when it popped back on, Lizzie’s image filled the small frame. She was smiling broadly and waving both hands in a big “Hello!” It was like talking to a friend through the television set. Megan waved back even more wildly, and the competition built until both girls went a little crazy with their hands, celebrating their reunion.
When Megan and Lizzie had first communicated this way, they’d spent most of the conversation discussing how cool the video instant-message system was. Now that the system was more familiar, the two dove into gabbing like girlfriends.
“Hey girl, what’s up?” said Lizzie.
“Ohmigosh, Lizzie,” Megan signed. “It is so annoying. Have you ever had a girl ignore you just because you’re deaf?”
“Hello?” said Lizzie. “It happens all the time.”
“But I mean, more than ignore you,” Megan responded. “Have you ever had a girl be really mean to you just because you’re deaf?”
Megan watched the screen for Lizzie’s response.
Lizzie jumped in her seat and clenched her fists like a prizefighter. “Who was mean to you?” she answered. She bobbed from side to side, pretending to be a boxer.
“It’s this girl, Alexis,” said Megan. “But it’s not like we actually fight. She’s just really mean to me because I’m deaf.”
“Maybe it’s not because you’re deaf,” said Lizzie. “Maybe she just doesn’t like you.”
“That’s what Matt says,” Megan replied. “But I just found out that she also doesn’t like me because I know her brother’s autistic.” She spelled the word carefully using the manual alphabet. “Do you know what that means?”
“Autistic?” Lizzie repeated. “Is that when a kid has trouble communicating? Or is that something that happens to a kid in a wheelchair?”
“It’s the communication thing,” said Megan.
“That’s what I thought,” said Lizzie. “There’s an autistic girl at my school, but I don’t know her that well. But what does this girl’s autistic brother have to do with anything?”
“Maybe she’s embarrassed by him and she thinks I’m going to tell people.”
“Did you tell people?”
“Only my dad,” said Megan. “And now you. It’s not like it’s a big deal. He’s autistic. Whatever.”
“Maybe it’s a big deal to her,” said Lizzie.
Megan flopped against her desk as though she couldn’t stand another word. She pounded her fists against the top of the desk in a big dramatic display of frustration. When Megan looked up at the screen, Lizzie was laughing even as she signed, “I’m serious!”
“My sister used to have huge problems with me being deaf,” said Lizzie. “She was always trying to be extra-special perfect to make up for the fact that she thought I was broken or something.”
“Just like Alexis!” said Megan. “She’s one of those girls that everybody thinks is so perfect. Actually, she is kind of perfect. She’s smart and athletic and pretty and—”
“If she’s that perfect,” Lizzie interrupted, “she should figure out how incredible you are.”
Megan and Lizzie shared a good laugh over that one.
“So maybe her problem is that she has to be double-perfect because she thinks her brother is less than perfect,” Lizzie explained.
“That’s what my dad says,” said Megan. “But that’s so weird.”
“It happens,” said Lizzie. “Happens all the time. It happened to my sister and me.”
“So why does she have a problem with me?” asked Megan. “I’m not her autistic brother. I’m just this kid at school.”
“Maybe you prove her wrong,” said Lizzie. “ ’Cause you’re different and you don’t have a problem with it.”
“You think so?” asked Megan.
“I don’t know,” said Lizzie. “I don’t know the girl. Ask her. She’s your friend.”
Megan wrinkled her nose at the suggestion. “She’s not my friend!” she snapped. “She’s only my science fair partner.”
“Oh, no!” cried Lizzie. “That’s so much worse!” She waved her hands in mock alarm. “A mean science fair partner! I wouldn’t want to be in your shoes for anything in the world!”
Megan was laughing too hard to respond.
“What’s your science fair project?” Lizzie asked. “Do you rub gum in her hair and see how mad she gets? Do you sneak under he
r desk and tie her shoelaces together and see if she falls over when she tries to stand up?”
“It’s not like that!” said Megan. “We’re running a hamster through a maze to see if the hamster chooses the purple room over the red room or the blue room.”
This time Lizzie was laughing so hard she couldn’t sign back.
“What’s so funny?” asked Megan.
“That poor hamster!” said Lizzie. Megan and Lizzie both shared a good laugh.
“I’m not talking to you anymore,” said Megan, catching her breath. “See you later?”
“Later,” signed Lizzie.
Megan clicked on the window to close her conversation with Lizzie. Then she pivoted in her chair and began digging through zipper pockets on her backpack.
Nothing, she thought when she came up empty-handed. She poked through her notebooks and thumbed through the pages of her social studies book. Still nothing.
Where is it? Megan asked herself.
She checked the pockets of her warm-up jacket and double-checked her change purse. She even felt around inside her sneakers. It was only when Megan happened to look inside her own purple pencil pouch that she stumbled upon the small slip of paper with Alexis’s e-mail address written on it.
Score, thought Megan.
She pivoted back to the keyboard and clicked on the mouse to open a window and compose a new e-mail.
Hey Alexis:
First off, I’m sorry things got crazy at your house this afternoon. I didn’t mean to upset you and—I just didn’t mean for that to happen. I only meant to drop off Zippity because he makes my brother sneeze. (Hey, maybe we should change the hamster’s name to Sneeze! What do you think?)
Nobody's Perfect Page 9
