Maria, who has Down syndrome, is ten. She loves Christmas and Easter and Valentine’s Day and Earth Day—it doesn’t matter. If it’s a holiday, Maria is ready to celebrate. She’s wide around the middle, a little like our snowman, but Maria talks all the time. She’s fun to be around, even though she insists on calling me “Melly-Belly.”
Every year when it’s time to bring out the ancient snowman, Maria jumps and cheers with real excitement. I’m pretty sure she’s the only kid in our class who truly likes it.
“It’s time for Sydney the Snowman!” she gasps. “Can I put his hat on? Please? Please? Can I give him my red scarf? Sydney will love my red scarf!”
Mrs. Hyatt and every teacher after her always let Maria take charge of the green paper cutout candy canes and the purple-striped stars cut from wrapping paper. Maria kisses each decoration before attaching it with Velcro to the snowman. She hugs Sydney each afternoon before she goes home. And she cries when it’s time to put Sydney away each year.
Even though she has trouble figuring out complicated stuff, Maria understands people and how they feel. “Why are you sad today, Melly-Belly?” she asked me one morning a couple of years ago. How could she have known that my goldfish had died the day before? I let her give me a big hug, and I felt better.
If Maria is our hugger, Gloria is our rocker. She rocks for hours in the corner under one of the dumb smiling flowers. The teachers are always trying to coax her out, but she wraps her arms around herself like she’s cold and keeps on rocking. She’s autistic, I think. She can walk perfectly well, and she talks when she has something to say. It’s always worth listening to.
“Snowman makes me shiver,” she blurted out one day when the classroom was surprisingly quiet. Then she curled up in her corner and said nothing else until it was time to go home. She’s never added one decoration to our snowman, but she does uncurl and seem to relax when a teacher puts on a CD of holiday music.
Willy Williams—yes, that’s his real name—is eleven. I’m not sure what his diagnosis is. He yodels, like one of those Swiss people in a mountain-climbing commercial. He makes other noises, too—whistles and grunts and shrieks. He’s never, ever quiet and never completely still. I sometimes wonder if he makes all those noises and movements in his sleep.
When Sydney the Snowman comes out of whatever box they keep him in during most of the year, the teacher has to keep Willy at a distance because he’ll knock the wobbly thing down. Willy’s not trying to be mean—it’s just that his arms and legs are in constant motion. He can’t help it.
Mrs. Hyatt was the first teacher to witness Sydney topple over. “Why don’t you add this bright pink bow to our snowman?” she had squeaked to Willy that first year.
All arms and movement, Willy tried, but the stupid pink bow went in one direction and poor Sydney went in the other. Three separate balls rolled across the room. Willy shrieked and whistled. I think I saw him smile as well.
Now, if Mrs. Hyatt had given Willy a baseball to glue to the snowman, it would have been placed more carefully. Willy loves baseball.
Our first-grade teacher, Mr. Gross, liked to play guessing games. Willy just burbled if the questions were about butterflies or boats, but watch out if the question was about baseball. He’d screech out the right answer before the yelps and bellows took over.
“Who was the first baseball player to hit sixty home runs in one season?” Mr. Gross asked.
“Babe Ruth!” Then a screech.
“Who broke Babe Ruth’s record of seven hundred fourteen home runs?”
“Hank Aaron!” Whooping noises.
“And who is the all-time hit king?” Mr. Gross seemed to be astonished at Willy’s knowledge.
“Pete Rose! Four-two-five-six. Eeek!”
“And who holds the lifetime touchdown record?”
Silence. Not even a squeak. Willy doesn’t bother with football. Or snowmen.
Sometimes when I look at Willy, though, I get the feeling that he really wishes he could be still and silent. I watch him as he closes his eyes, frowns up his face, and concentrates. For just a few minutes he’s quiet. He takes a deep breath, like a swimmer coming up for air. When he opens his eyes, the noises start all over. And then he always looks sad.
Jill uses a walker because her left foot drags a little as she walks. She’s thin and pale and very quiet. When Sydney comes out for the season, Jill’s eyes are almost blank. It’s like the light has been clicked off. She cries a lot. Mr. Gross used to put decorations in her hand and try to make it easy for her to join the activity, but it was like helping a store mannequin. I heard an aide say she was in a car accident when she was a baby. I think that’s awful—to start out okay, then lose the ability to do stuff.
Freddy, who’s almost twelve, is the oldest in our group. He uses an electric wheelchair. He loves that thing. He tells me every chance he gets, “Freddy go zoom! Freddy go zoom!” He grins, pretends he’s putting on a helmet, then he pushes the controller to its max position and takes off across the room. Of course, his speed control has two settings—slow and slower. But to Freddy, he’s at the racetrack.
He zooms his electric chair around the raggedy old snowman, tossing Velcroed stars and bells at it, asking, “Snowman go zoom zoom?”
Well, after Willy sent it flying, and Carl tried to stab it with pencils, I guess it was a fair question! Every year Freddy adds his own touches to the snowman— NASCAR and NASA decals like the ones on his chair. If you ask Freddy what date it is, he can’t tell you. But if you want to know who won the Daytona 500, Freddy will know.
And then there’s me.
I hate the stupid snowman. But I toss tinsel at it like they ask me to. It’s easier than trying to explain.
I have a large Plexiglas tray that fastens to the arms of my chair. It serves as a food tray as well as a communication board. When I was younger, Mom pasted dozens of words on it, but I was still limited to only a handful of common nouns, verbs, and adjectives, some names, and a bunch of smiley faces. There are also a few necessary phrases, like, I need to go to the bathroom, please and I’m hungry, but most people—even little kids—need to say more than that in a day. Duh!
I’ve got please and thank you, yes, no, and maybe close together on the right-hand side. On the left are the names of people in my family, kids in my class, and teachers. The name “Sydney” is not included.
There’s an alphabet strip at the top, so I can spell out words, and a row of numbers under that, so I can count or say how many or talk about time. But for the majority of my life, I’ve had the communication tools of a little kid on my board. It’s no wonder everybody thinks I’m retarded.
I hate that word, by the way. Retarded.
I like all the kids in room H-5, and I understand their situations better than anybody, but there’s nobody else like me. It’s like I live in a cage with no door and no key. And I have no way to tell someone how to get me out.
Oh, wait! I forgot about Mrs. V!
CHAPTER 6
Mrs. Violet Valencia lives next door to us. Violets are purple, and Valencia oranges are, well, orange! Purple oranges are just plain unusual, and so is she. She’s a big woman—about six feet tall, with the biggest hands I’ve ever seen. They’re huge! I bet she could put a full-size basketball in each of her palms and still have room left over. If Mrs. V is, well, like a tree, then my mom is a twig next to her.
I was about two years old when I first started hanging out at Mrs. V’s house. Mom and Dad hardly left me with anybody at first, but sometimes their work schedules overlapped, and they needed a third person to help out. Mom said Mrs. V was the very first visitor when I first came home from the hospital, the first person to just pick me up like any other baby. A lot of my parents’ friends had been scared to even touch me, but not Mrs. V!
Mrs. V wears huge, flowing dresses—must be miles of material in those things—all in crazy color combinations. Bubble-gum pink, with fire-engine red, with peachy sherbet, with bright cinnamon. And
all shades of orange and purple, of course. She told me she makes the dresses herself. I guess she’d have to. I have never seen anything like them in any store in the mall. Or in a hospital, either.
Mrs. V and Mom used to work together as nurses at the hospital. Mom told me the children there had been crazy about her. She wore the same bright outfits in the preemie ward, the kids’ cancer ward, the children’s burn unit. “Color brings life and hope to these children!” she’d announce boldly, daring anybody to disagree. I guess nobody did.
I remember sitting on Mrs. V’s porch that very first time. Mom and Dad looked concerned, but Mrs. V held me tightly and bounced me on her knees. She must have a hidden microphone under those flowing clothes—she has one of those voices that can make anybody shut up, turn, and listen.
“Of course I’ll watch Melody,” she’d said with certainty.
“Well, Melody is, well, you know, really special,” Dad said hesitantly.
“All kids are special,” Mrs. V had replied with authority. “But this one has hidden superpowers. I’d love to help her find them.”
“We can’t possibly pay you what this is worth to us,” Dad began.
Mrs. V had shrugged and said with a smile, “I’ll appreciate whatever you can give me.”
My dad looked sheepish. “Well, thanks. And I’ll get that ramp finished this weekend. I just need to make one more trip to the lumberyard.”
“Now, that will be a big help,” Mrs. V had said with a nod.
“Melody can be a handful,” Mom had warned.
Mrs. V lifted me into the air. “I’ve got big hands.”
“We want her to reach her highest potential,” Dad added.
“Oh, gag me!” Mrs. V said, startling him. “Don’t get bogged down in all those touchy-feely words and phrases you read in books on disabled kids. Melody is a child who can learn and will learn if she sticks with me!”
Dad looked embarrassed. But then he grinned. “Bring her back in twenty years.”
“You’ll have her back home by suppertime!”
So most workdays I’d end up at Mrs. Valencia’s place for a couple of hours until Mom or Dad could get home. When I got older, I went over to Mrs. V’s every afternoon after school. I don’t know how much they paid her, but it couldn’t have been enough.
From the very beginning, Mrs. Valencia gave me no sympathy. Instead of sitting me in the special little chair my parents had bought for me, she plopped me on my back in the middle of the floor on a large, soft quilt. The first time she did that, I looked up at her like she was crazy. I cried. I screeched. She ignored me, walked away, and flipped on her CD player. Loud marching band music blared through the room. I liked it.
Then she came back and put my favorite toy—a rubber monkey—a few inches from my head. I wanted that monkey. It squeaked when you touched it. But it may as well have been a million miles away. I was on my back, stuck like a turtle. I screamed louder.
Mrs. V sat down on the quilt. “Turn over, Melody,” she said quietly. Sometimes she can make her voice really soft.
I was so shocked, I stopped yelling. I couldn’t turn over. Didn’t she know that? Was she nuts?
She wiped my nose with a tissue. “You can turn yourself over, Melody. I know you understand every word I say to you, and I know you can do this. Now roll!”
Actually, I’d never bothered to try very hard to roll anywhere. I’d fallen off the sofa a couple of times, and it hurt, so I usually just waited for Mom or Dad to move me to a comfortable position.
“Look at how you’re lying. You’re already on your side—halfway there. Use all that screaming and hollering energy you’ve got to take you to another position. Toss your right arm over and concentrate!”
So I did. I strained. I reached. I tried so hard, I farted! Mrs. V cracked up. But slowly, slowly, I felt my body rolling to the right. And then, unbelievably, plop! I was on my stomach. I was so proud of myself, I screeched.
“I told you so,” Mrs. V said, victory in her voice. “Now go get that monkey!”
I knew better than to protest. So I reached for it. The monkey was now only two inches from my hand. I tried to scoot. My legs kept doing the opposite of what my head wanted them to do. I wiggled. I grabbed a fistful of the quilt and pulled. The monkey got closer!
“You’re a smart little cookie,” Mrs. V told me.
I gave the quilt another tug, and finally, gradually, I had the monkey in my hand. I clutched it, and it squeaked as if it were glad to see me. I grinned and made it squeak again and again.
“After that workout, you must be hungry,” she said. She fed me a vanilla milk shake first, then my vegetables and noodles. Mrs. Valencia always serves dessert first. And I always eat all my food—the healthy part, and the yummy part, too. It’s our secret.
Mrs. V is the only person who lets me drink soda. Coke. Sprite. Tahitian Treat. I love the nose-tickling burp. Mom and Dad mostly give me milk and juice. Mello Yello is my favorite. Mrs. V even started calling me that.
At Mrs. V’s house I learned to scoot and then to crawl. I’d never win a baby-crawling contest, but by the time I was three, I had learned to get across a room. She made me figure out how to flip myself over from front to back and back to front again. She was tough on me. She let me fall out of my wheelchair onto pillows so I could learn how best to catch myself.
“Suppose somebody forgets to fasten that seat belt of yours,” she said in that voice that sounded like she was chewing gravel. “You better know what to do, or you’ll bust your head wide open.”
I didn’t want a busted head, so we practiced. She’d send me back home, tell Mom I had a good dinner and a good poop—I have no idea why parents think that’s so important—then wink at me. I was like her secret mission.
Once I started school, however, I discovered I had a much bigger problem than just falling out of my chair. I needed words. How was I supposed to learn anything if I couldn’t talk? How was I supposed to answer questions? Or ask questions?
I knew a lot of words, but I couldn’t read a book. I had a million thoughts in my head, but I couldn’t share them with anybody. On top of that, people didn’t really expect the kids in H-5 to learn much anyway. It was driving me crazy!
I couldn’t have been much more than six when Mrs. V figured out what I needed. One afternoon after school, after a snack of ice cream with caramel sauce, she flipped through the cable channels and stopped at a documentary about some guy named Stephen Hawking.
Now I’m interested in almost anything that has a wheelchair in it. Duh! I even like the Jerry Lewis telethon! Turns out Stephen Hawking has something called ALS, and he can’t walk or talk, and he’s probably the smartest man in the world, and everybody knows it! That is so cool.
I bet he gets really frustrated sometimes.
After the show went off, I got real quiet.
“He’s like you, sort of, isn’t he?” Mrs. V asked.
I pointed to yes on my board, then pointed to no.
“I don’t follow you.” She scratched her head.
I pointed to need on my board, then to read. Need/read. Need/read.
“I know you can read lots of words, Melody,” Mrs. V said.
I pointed again. More. I could feel tears coming. More. More. More.
“Melody, if you had to choose, which would you rather be able to do—walk or talk?”
Talk. I pointed to my board. I hit the word again and again. Talk. Talk. Talk.
I have so much to say.
So Mrs. V made it her new mission to give me language. She ripped all the words off my communication board and started from scratch. She made the new words smaller, so more could fit. Every single space on my talking board got filled with names and pictures of people in my life, questions I might need to ask, and a big variety of nouns and verbs and adjectives, so I could actually compose something that looked like a sentence! I could ask, Where is my book bag? or say, Happy Birthday, Mom, just by pointing with my thumb.
I have magic thumbs, by the way. They work perfectly. The rest of my body is sort of like a coat with the buttons done up in the wrong holes. But my thumbs came out with no flaws, no glitches. Just my thumbs. Go figure.
Every time Mrs. V would add new words, I learned them quickly, used them in sentences, and was hungry for more. I wanted to READ!
So she made flash cards.
Pink for nouns.
Blue for verbs.
Green for adjectives.
Piles and piles of words I learned to read. Little words, like fish and dish and swish. I like rhyming words—they’re easy to remember. It’s like a “buy one, get the rest free” sale at the mall.
I learned big words, like caterpillar and mosquito, and words that follow crazy rules, like knock and gnome. I learned all the days of the week, months of the year, all the planets, oceans, and continents. Every single day I learned new words. I sucked them in and gobbled them up like they were Mrs. V’s cherry cake.
And then she would stretch out the cards on the floor, position me on a big pillow so I could reach them, and I’d push the cards into sentences with my fists. It was like stringing the beads of a necklace together to make something really cool.
I liked to make her laugh, so I’d put the words into wacky order sometimes.
The blue fish will run away. He does not want to be dinner.
She also taught me words for all the music I heard at home. I learned to tell the difference between Beethoven and Bach, between a sonata and a concerto. She’d pick a selection on a CD, then ask me the composer.
Mozart. I’d point to the correct card from the choices she’d set in front of me. Then I’d point to the color blue on my board.
“Huh?” she asked.
When she played a selection from Bach, I’d point to the correct composer, then once again touch the color blue on my board. I also touched purple.
Out of My Mind Page 3