I smiled at him and smeared oatmeal on my tray.
Mom came back down with fresh makeup and a freshly painted-on smile, her hair done, and with my pink shirt. She and Dad hugged in the kitchen, both took a deep breath, and we actually made it out of the house on time.
We had lots of days like that.
CHAPTER 10
Penny wakes every morning asking for her “Doodle,” a soft, brown stuffed animal that might be a monkey or maybe a squirrel. It’s so beat-up, nobody knows for sure what it really is. She drags it everywhere. “Doodle!” she cries if it’s been caught in her blankets. “Doodle!” she cries if it’s right next to her. Of course, it sounds more like “doo-doo” when she says it. That makes Dad crack up.
I smile when I hear footsteps outside my door. Big ones and little tiny ones. My mom and Penny. And Doodle, of course. Sometimes my legs and arms are stiff from being in the same position all night, and sometimes my toes tingle. My bedroom door opens—Dad never gets around to fixing that squeak.
Mom traces a finger along my cheek. Maybe she’s checking to see if I’m still breathing. I am. I open my eyes. I wish I could say, Good morning, but I just grin instead. She pulls me up and hugs me, rarely stopping to sit in the rocking chair anymore, and rushes me to the bathroom because I usually have to go really bad first thing in the morning.
Penny trails behind us, wearing a huge red and white hat like the one in The Cat in the Hat—the girl has a major hat obsession—and always with her Doodle. Butterscotch is never far from her. She lets Penny put hats on her and somehow endures Penny’s hugs, which can sometimes feel more like choke holds. I’ve gotten a few! She barks to alert Mom or Dad if Penny gets too close to an electric plug or the front door.
Our bathroom is painted ocean blue and is large enough for Penny, Butterscotch, me and Mom—and my chair—without feeling crowded. That’s a good thing, because we spend lots of time in there. Penny and I make pretty big messes. But at least I don’t have to wear diapers. It’s bad enough that someone has to put me on the toilet, but diapers? Yuck!
Even though the doctors said it would be impossible, by the time I was three, Mom had me potty trained like any other kid my age. I hated sitting in dirty diapers, and she hated changing them, so I figured out a way to let her know I had to go, and she’d hustle me to the toilet.
Mom and I can sometimes talk without words. I point to the ceiling, and she somehow just knows whether I’m talking about the ceiling fan, the moon, or the dark spot where the rain leaked through during the last thunderstorm. She can tell if I’m sad, and she can sense when I need a hug. She rubs my back and makes me relax when I’m tense and upset. She tells dirty jokes sometimes when Dad isn’t listening, and we both crack up.
One morning, as she was getting me dressed for school, I pointed to her stomach, then covered my eyes as if the sight were too much to look at. It was shortly after Penny had been born, and she still had a good-size baby bulge.
“You calling me fat?” she asked, acting insulted.
I laughed a little and said, “uh,” which is the closest thing I’ve got to a yes.
“Take it back!” she said, tickling the bottom of my feet.
Instead, I held my arms out like I was making a big circle and laughed out loud. Huge! Enormous! Like an elephant! I could tell she knew what I was thinking.
We both rolled with laughter, and then she hugged me tight. I wish I could tell her I loved her.
Mom knows when I’m hungry or thirsty, and whether I need a glass of milk or just some water. She can tell if I’m really sick or simply faking it, because sometimes I do pretend I don’t feel good just so I can stay home. She can tell what my temperature is just by feeling my forehead. She only uses the thermometer to prove she’s right.
I can tell stuff about what she is thinking too. By the end of the day, after she’s been at the hospital all day, then fixed dinner, then bathed Penny and me and put me in bed, I can tell she’s kinda reached her max. She breathes hard. Her forehead is sweating. I sometimes reach out and touch her hand with mine. I can feel her calm down, and she’ll trace her fingers along my cheek, just like she does in the morning, and give me a kiss good night.
Every Saturday morning after I’ve been fed, Mom reads the newspaper while she has her coffee and Penny smashes bananas on her high-chair tray. Butterscotch doesn’t like fruit, but she stays close by, just in case somebody drops a piece of bacon. Mom’s off on weekends, so she relaxes. She sometimes reads articles to me or tells me about the latest hurricane or uprising or explosion in the world.
“More fighting in the Middle East,” she says.
I’ve seen it on TV. Bombs and tears and faces of fear.
“There’s a new Superman movie coming out soon,” she reads as she shakes the newspaper flat. “Maybe we can go catch a matinee.”
I love superheroes. I guess Superman is my favorite because he can fly. How great would that be?
Mom reads me the comic pages also. I like Garfield.
“Garfield is cheating on his diet again,” Mom says. “He ate Jon’s lasagna and Odie’s meatballs.”
I laugh and point at Mom’s hips.
“You calling me fat again, Miss Dee-Dee? Just because I finished off your spaghetti last night?”
I grin.
“You’ll be sorry when I start feeding everybody lettuce for lunch!”
We both laugh. Mom’s not even close to being fat, but I like to tease her.
For my tenth birthday I got a whole book of Garfield cartoons—now, that’s what’s up! I made Dad read it to me over and over. Garfield is a cat who has a lot to say, but all his words are written in little circles above his head. He can’t really talk, of course—he’s a cat!
But sometimes that’s how I feel—like wouldn’t it be cool if I had somebody to write the words over my head so people would know what I’m thinking? I could live with that—large floating bubbles above me, speaking for me.
Wouldn’t it be cool if somebody could invent a bubble-talking machine before fifth grade starts in a couple of weeks? Hah!
When I try to talk, the words are exploding in my brain, but all that comes out are meaningless sounds and squeaks. Penny can say lots of words and pieces of words. But my lips won’t come together to make even simple sounds like that, so most of my noises are vowels. I can say “uh” and “ah” pretty clearly, and, if I concentrate, sometimes I can squeeze out a “buh” or a “huh.” But that’s it.
My parents can usually figure out what I need just by listening carefully. To outsiders, I probably sound like one of those children who was raised by wolves. My communication board, even with everything Mrs. V has added to it—well, it sorta sucks.
For example, one afternoon earlier this summer, I had a taste for a Big Mac and a shake. Vanilla. I love fast food. Mom wasn’t home, and getting my father to figure out what I want is sometimes a big job. I pointed to the picture of my dad, the word go, the word eat, and a happy face. That’s all I had to work with. I gotta give him credit—he tried. He asked me a million questions, so I could point to yes or no.
“Are you hungry?”
Yes.
“Okay, I’ll fix you some tuna salad.”
No. I pounded on the tray.
“I thought you said you were hungry. Do you want some spaghetti?”
No. Gentler this time.
“So what do you want?”
No answer. Nothing on my board could describe it. I pointed to go again.
“You want me to go in the kitchen and cook you something?”
No.
“You want me to go to the grocery store?”
No. I was starting to get upset, pounding the board with my right thumb once more.
“I don’t get it. You said you wanted me to get you something to eat.”
Yes. Once again I pointed to Dad’s picture, then go, then eat, then happy face.
I could feel one of my tornado explosions starting. I started to kick, and m
y arms got all tight. It was driving me crazy that I couldn’t tell him about a stupid Big Mac.
“Calm down, sweetheart,” Dad said softly.
My jaws felt like steel bars. I knew I was breathing hard, and my tongue wouldn’t stay in my mouth. I hit my board once more, aiming at no word in particular.
“Argwk!” I screeched.
“I’m sorry, Melody, but I can’t figure out what you mean. I’m going to fix you some noodles and cheese. Will that be okay?”
I sighed, gave up, and pointed to yes. I calmed down while he cooked. The noodles were pretty good.
A couple of weeks later my dad and I were in the car and we passed by a McDonald’s. I screeched and kicked and pointed like Godzilla was coming down the street. Dad must have thought I was nuts. Finally, he said, “Would you like to stop and get a Big Mac and a shake for dinner tonight as a treat?”
I shouted, “Uh!” as loud as I could, and kept on kicking with absolute delight as he pulled into the drive-through. He never did make the connection between that fast-food stop and my request a couple of weeks earlier. But that’s okay. Even though it took us an hour to finish, it was one of the best hamburgers I’ve ever had.
CHAPTER 11
Fifth grade started a few weeks ago, and a couple of cool things have happened. Well, I didn’t get a gadget that makes Garfield-like speech bubbles over my head, but I did get an electric wheelchair, and our school began something called “inclusion classes.” I thought that was funny. I’ve never been included in anything. But these classes are supposed to give kids like me a chance to interact with what everybody else calls the “normal” students. What’s normal? Duh!
Comparing my new chair to my old one is like comparing a Mercedes to a skateboard. The wheels are almost like car tires, which makes the ride smooth and easy, like riding on pillows. I can’t go very fast, but I can propel myself down the hall with just a little lever on the handrail. Or, if I flip the switch to manual, I can still be pushed if necessary.
When Freddy first saw it, he shouted, “Woo-hoo!” like I’d just won the Indy 500. “Melly go zoom zoom now! Wanna race?” He spun his own chair in excited circles around me.
I’m sure he could beat me, even at the subatomic speeds our chairs are set to.
My electric chair is a lot heavier than my manual chair, and it’s almost impossible for Mom and Dad to lift anywhere. “When you decide to switch to a rocket ship for transportation,” Dad joked at first, rubbing his back, “you’re gonna need to hire Superman to get it in the car!”
I grinned. But I know he saw the thanks in my eyes.
So he bought a set of portable wheelchair ramps that fold and fit in the back of our SUV. With those, he can roll the new chair into the back of our car and still have back muscles left over.
For me, it’s all about the freedom. Now I don’t have to wait for somebody to move me across the room. I can just go there. Nice. So when they decided to start mainstreaming us into the regular classes, the electric chair was really helpful.
Our fifth-grade teacher in room H-5 reminds me of a television grandmother. Mrs. Shannon is pudgy, wears lavender body lotion every single day, and I think she must be from the South because she talks with a real strong drawl. Somehow it makes everything she says seem more interesting.
She told us on the first day, “I’m gonna bust a gut makin’ sure y’all get all you can out of this school year, you hear? We’re gonna read, and learn, and grow. I believe every one of y’all got potential all stuffed inside, and together we’re gonna try to make some of that stuff shine.”
I liked her. She brought in stacks of new books to read to us, as well as games and music and videos. Unlike Mrs. Billups, Mrs. Shannon must have read all our records because she dusted off the headphones and even brought in more books on tape for me.
“Ya’ll ready for music class?” she asked us one morning. “Let’s get this inclusion stuff goin’!”
I jerked with excitement. As the aides helped us down the hall to the music room, I wondered if I’d get to sit next to a regular kid. What if I did something stupid? What if Willy yodeled, or Carl farted? Maria was likely to blurt out something crazy. Would this be our only chance? What if we messed this up? I could barely contain myself. We were going to be in a regular classroom!
The music teacher, Mrs. Lovelace, had been the first to volunteer to open her class to us. The music room was huge—almost twice as large as our classroom. My hands got sweaty.
The kids in there were mostly fifth graders too. They’d probably be surprised to know that I knew all their names. I’ve watched them on the playground at lunch and at recess for years. My classmates sit under a tree and catch a breeze while they play kickball or tag, so I know who they are and how they work. I doubted if they knew any of us by name, though.
Well, the whole thing was almost a disaster. Willy, probably upset and scared about being in a new room, started yelping at the top of his lungs. Jill began to cry. She held tightly to the hand grips of her walker and refused to move past the doorway. I wanted to disappear.
All of the “normal” children in the music class— I guess about thirty of them—turned to stare. Some of them laughed. Others looked away. But one girl in the back row crossed her arms across her chest and scowled at her classmates who were acting up.
Two girls, Molly and Claire—everyone knew them because they were mean to almost everybody on the playground—mimicked Willy. They made sure they stayed just out of the teacher’s line of sight. But I saw it. So did Willy.
“Hey, Claire!” Molly said, twisting her arms above her head and bending her body so it looked crooked. “Look at me! I’m a retard!” She laughed so hard, she snorted snot.
Claire cracked up as well, then let spit dribble out of her mouth. “Duh buh wuh buh,” she said, crossing her eyes and pretending to slip out of her chair.
Mrs. Lovelace finally noticed them, because she said sternly, “Stand up please, Claire.”
“I didn’t do anything!” Claire replied.
“You stand as well, Molly,” Mrs. Lovelace added.
“We were just laughing,” Molly said defensively. But she stood up next to Claire.
Mrs. Lovelace took both girls’ chairs and slid them over to the wall.
“Why’d you do that?” Claire cried out in protest.
“You have perfectly good bodies and legs that work. Use them,” Mrs. Lovelace instructed.
“You can’t make us stand the whole class!” Claire moaned.
“The board of education requires that I teach you music. There is nothing in the rule book that requires you sit down while I do it. Now stand there and be quiet, or I’ll send you to the office for showing disrespect to our guests.”
They stood. In the middle of the third row of chairs, where everyone else was seated comfortably, they stood.
This teacher is awesome!
After that, things went more smoothly. Jill, who had continued to cry, had been taken back to our room by one of the aides. The rest of us sat quietly in the back of the room.
Mrs. Lovelace began class once more. “I think we need a moment to gather ourselves, children.” She sat down at her piano and began to play “Moon River,” and then she switched to the theme song from one of those new vampire movies. Oh, yeah, she knew what we liked. When I started seeing the colors, I knew she was good. Forest green, lime green, emerald.
I glanced over at Gloria. Instead of sitting all curled up like she usually did, her arms were outstretched like she was trying to catch the music and bring it to her. Her face was almost glowing. She began to sway with the music.
Then Mrs. Lovelace completely changed tempo and played the opening notes to “Take Me Out to the Ball Game.” Willy clapped his hands wildly.
Finally, the teacher started to play “Boogie Woogie Bugle Boy.” Dad would have loved it. Kids started to shimmy in their seats. Maria got up and started dancing! She clapped loudly, never quite on the beat, but to a rhythm that
was all her own.
Mrs. Lovelace paused at the end of the song. “Music is powerful, my young friends,” she said. “It can connect us to memories. It can influence our mood and our responses to problems we might face.”
She cut her eyes at Claire and Molly, who still stood in the empty places where their chairs had been.
I wanted to tell Mrs. Lovelace I liked music too. I wanted to know if she’d ever heard the song “Elvira” or if she would teach us how to make our own music. I tried to raise my hand, but she didn’t notice me. It must have looked like just another one of those random movements that kids like me seem to make. But I had the feeling that Mrs. Lovelace was someone who’d take the time to figure me out.
The teacher went on. “Before I continue with the lesson, let’s make this a real inclusion experience. Perhaps our friends from room H-5 would like to sit with the rest of us instead of being stuck in the back.”
Freddy heard that and took his chance. He put his chair into gear and zoomed to the front of that big room and shouted, “I am Freddy. I like music. I go fast!”
The class laughed. I can tell the difference between people making fun of us and people being nice to us. Freddy could too, so he joined in the laughter. Mrs. Lovelace looked momentarily startled, then went over to Freddy, shook his hand, and welcomed him to the class. She sat him right there in front, next to a boy named Rodney. Rodney gave Freddy a high five, and the two of them grinned at each other. Okay, I had to admit it—I was jealous.
Mrs. Lovelace asked an aide to bring Gloria down front close to the piano. A girl named Elizabeth glanced at Gloria nervously, but she didn’t move away when Gloria was wheeled next to her.
Elizabeth’s best friend is a girl named Jessica. At recess they sit together near the fence and share granola bars. I’ve always wondered what they whisper about. I also noticed that everything Elizabeth does, Jessica tries to outdo. Like, if Elizabeth beats her running to the fence, Jessica insists they run again so she can win too. Or if Elizabeth gets a new book bag, Jessica will have a new one the next day.
Out of My Mind Page 6