Out of My Mind (3 page)

“She laughs at jokes,” my mother told him, the ice in her voice replaced by desperation, “right at the punch line.” Mom’s voice faded. What she was saying sounded ridiculous, even to me, but I could see she just couldn’t find the words to explain her gut feeling that I had some smarts stuck in here.

Dr. Hugely looked from her to me. He shook his
head, then said, “You’re lucky she has the ability to smile and laugh. But Melody will never be able to walk on her own or speak a single sentence. She will never be able to feed herself, take care of her own personal needs, or understand anything more than simple instructions. Once you accept that reality, you can deal with the future.” That was just plain mean.

My mom hardly ever cries. But she did that day. She cried and cried and cried. Dr. Hugely had to give her a whole box of tissues. Both of them ignored me while she sobbed and he tried to find nice words to say to make her feel better. He didn’t do a very good job.

Finally, he gave her options. “You and your husband have several decisions to make,” he told Mom. “You can choose to keep her at home, or you can send her to a special school for the developmentally disabled. There aren’t many choices here locally.”

Where do they get those almost-pleasant-sounding phrases to describe kids like me?

Mom made a sound that could have been the mewing of a kitten. She was losing it.

Dr. Hugely continued. “You can also decide to put Melody in a residential facility where she can be cared for and kept comfortable.”

He pulled out a colorful brochure with a smiling
child in a wheelchair on the cover and handed it to Mom. I trembled as she took it.

“Let’s see,” the doctor said, “Melody is, ah, five now. That’s a perfect age for her to learn to adjust to a new environment. You and your husband can get on with your lives without her as a burden. In time, her memories of you will fade.”

I stared at Mom frantically. I didn’t want to be sent away. Was I a burden? I never thought about it like that. Maybe it
would
be easier for them if I weren’t around. I gulped. My hands got cold.

Mom wasn’t looking at me. She was staring daggers at Dr. Hugely. She crumpled up the tissue she held and stood up. “Let me tell you something, Doctor. There is no way in heaven or hell that we will be sending Melody away to a nursing home!”

I blinked. Was this my mother? I blinked again, and she was still there, right up in Dr. Hugely’s face!

She wasn’t finished. “You know what?” my mother said as she angrily hurled the brochure into the trash can. “I think you’re cold and insensitive. I hope you never have a child with difficulties—you’d probably put it out with your trash!”

Dr. Hugely looked shocked.

“And what’s more,” she continued, “I think you’re wrong—I know you are! Melody has more brains
hidden in her head than you’ll ever have, despite those fancy degrees from fancy schools you’ve got posted all over your walls!”

It was the doctor’s turn to blink.

“You’ve got it easy—you have all your physical functions working properly. You never have to struggle just to be understood. You think you’re smart because you have a medical degree?”

He was wise enough to keep his mouth shut and ashamed enough to lower his head.

Mom was on a roll. “You’re not so intelligent, sir— you’re just lucky! All of us who have all our faculties intact are just plain blessed. Melody is able to figure out things, communicate, and manage in a world where
nothing
works right for her. She’s the one with the true intelligence!”

She marched out of his office then, rolling me swiftly through the thick doors. In the hall we did a quick fist bump—well, the best I could manage. My hands were no longer cold.

“I’m taking you right now and enrolling you at Spaulding Street Elementary School,” she announced with determination as we headed back to the car. “Let’s get busy!”

I have been at Spaulding Street Elementary School for five years. It’s very ordinary—filled with kids, just like the schools I see on television shows.

Kids who chase each other on the playground and run down the hall to get to their desks just before the bell rings.

Kids who slide on icy patches in the winter and stomp in puddles in the spring.

Kids who shout and push.

Kids who sharpen their pencils, go to the board to do math problems, and open their books to read a poem.

Kids who write their answers on notebook paper and stuff their homework into backpacks.

Kids who throw food at each other in the lunchroom while they sip on juice boxes.

Kids who sing in the choir, learn to play the violin, and take gymnastics or ballet or swimming lessons after school.

Kids who shoot baskets in the gym. Their conversation fills the halls as they make plans, make jokes, make friends.

Kids who, for the most part, ignore kids like me.

The “special needs” bus, as they call it, has a cool wheelchair lift built in the door, and it picks me up every morning in front of my house. When we get to school, the drivers take their time and make sure all the belts and buckles are tight before they lower all of us with walkers or wheelchairs or crutches or helmets down on the bus lift, one by one, to the ground. Then an aide will roll us, or help us walk, over to a waiting area.

When the weather is bright and sunny, we sit outside the school. I like to watch the “regular” kids as they play four-square while they wait for the bell to ring. They look like they’re having so much fun. They ask one another to play, but no one’s ever asked any of us. Not that we could, anyway, but it would be nice if somebody would say “Hi.” I guess the four-square players must
think we’re all so backward that we don’t care that we get treated like we’re invisible.

I was so excited when Mom first enrolled me here. I thought I’d learn new things every day, but mostly it was simply something to do that took up time and got me out of the house. In second and third grades I probably learned more from the Sci Fi or Discovery Channels than I ever learned at school. My teachers were nice, most of the time, but they would’ve needed X-ray vision like Superman to see what was in my head.

I am in a special program with other children with what they call “disabilities.” Our ages range from nine to eleven. Our “learning community”—what a joke— has been together since I started school. We never seem to move up and on like other classes. We just do what we did the year before, but with a new teacher. We don’t even get a new classroom each year.

So the same kids I’m with now were together in second grade with a teacher named Mrs. Tracy. As third graders we suffered through Mrs. Billups, who could have got the award for worst teacher in the world. There are six self-contained learning communities in our wing of the building—children with various conditions, from preschoolers to kids who ought to be in high school by now.

Our classroom, room H-5, might be nice for babies,
but give me a break! It’s painted yellow and pink. One wall is covered with a sun with a happy face, a huge rainbow, and dozens of flowers—also with smiley faces. The other wall is painted with happy bunnies, kittens, and puppies. Bluebirds fly all over a sky with perfect white clouds. Even the birds are smiling. I’m almost eleven years old, and if I have to look at puppies in paradise one more day, I think I’ll puke!

Ashley, the youngest in our group, actually does puke quite a bit. She’s nine, but she could pass for three. She has the smallest wheelchair I’ve ever seen.

She’s our fashion model. She is just plain beautiful— movie-star eyes; long, curly hair; and a tiny pixie nose. She looks like a doll that you see in a box on a shelf, except she’s prettier. Her mother dresses her in a perfectly matching outfit every day. If she has on a pink shirt, she wears pink slacks, pink socks, and two tiny pink bows in her hair. Even her little fingernails have been done to match.

When we do what the teachers and therapists call “group” activities, it’s hard for Ashley to participate. Her body is really stiff, and it’s tough for her to reach or grab or hold anything.

Every Christmas they make the kids in H-5 decorate a stupid six-foot Styrofoam snowman. I don’t know what the children in the regular classrooms get
to do, but I know it’s close to holiday time when whatever teacher we have that year pulls this thing out of a closet.

Mrs. Hyatt, the kindergarten teacher, loved that messed-up snowman, just three huge balls of yellowing Styrofoam, stuck together with pins and pipes.

“Let’s decorate, children!” she said in her squeaky and annoying voice. “We are going to place decorations with Velcro or toothpicks or glue—whatever works—on Sydney, our H-5 holiday snowman!”

I don’t know how old the snowman was at that point, but poor Sydney could not stand up straight. It leaned like a drunk who needed the wall to hold it up. Mrs. Hyatt gave us green snowflakes. Green? We were the dumb kids. I guess we weren’t supposed to care. Brown garland. Stars in purple and pink.

“Do you like the snowman, Ashley?” Mrs. Hyatt asked her. It’s almost impossible for Ashley to communicate because her body is so tight. Her “talking board” has just two words on it—
yes
and
no
. She turned her head slightly to the left for no. I bet she wished she could knock the thing down.

Compared to Ashley, Carl is huge. Even though he’s just nine, he’s got a special wheelchair that’s extra wide, and it takes two aides to lift him in and out of it. But he’s good with his hands. He can move his own chair,
and he can hold a pencil well enough to write his name. And stab a snowman.

Carl sticks pencils and rulers into the snowman’s torso and pens into its head. Mrs. Hyatt used to clap her hands and say in her little squeaky voice, “Good job, Carl! So very creative!”

Carl would just laugh. He can talk, but only in very short sentences that usually have two parts. He has very strong opinions. “Snowman is dumb,” he’d yell. “Very, very dumb.”

I think he hates the snowman as much as I do. One year he pinned a diaper on the back and another on the front of the bottom third of the snowman. The teacher let them stay. Carl knows diapers.

When he poops in his pants, which is almost every day, the whole room smells like the monkey house at the zoo. The aides are so patient with him, though. They snap on their rubber gloves, clean him up, change his clothes—he always wears sweats—and sit him back in his chair. Those aides deserve medals. We’re not an easy bunch.

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?”