Chicken Soup for the Soul: Children with Special Needs
Page 9
The show began. Mike and Kendra, the whale trainers, introduced themselves to this hysterical mom with winks and smiles. Sean went up to the microphone and introduced Sam Ward from New Jersey. Sam, who had memorized the show, mimicked the trainers. He knew what to do, and he knew the act. The trainers got such a kick out of it! Sam was not afraid in the least to be in front of a huge crowd, and directed the whales to do their tricks. I will be eternally grateful to Nicholas, who had the insight, and to Sean, Mike, and Kendra, who had the hearts, to give this special boy a very special day.
Michelle Ward
Michelle Ward began her career in architecture, but has been a working artist for ten years. She is a regular contributor to Somerset Studio magazine and serves on their editorial advisory board. Michelle and her husband, Graham, live in New Jersey with their three children. And Thursday, August 16, 2007? You know where they’ll be!
Sam enjoying a good read with a new friend.
Reprinted by permission of Michelle Marie Kelly Ward. ©2006 Michelle Marie Kelly Ward.
Talking to Strangers
Better keep yourself clean and bright; you are the window through which you must see the world.
George Bernard Shaw
My nine-year-old daughter, Jessica, is a friendly soul. From the time she was tiny, she would march right up to strangers on the street and say, “Hello!” Her brown eyes would twinkle, and she’d be sporting a big grin on her face. I wish she weren’t so gregarious, because she’s vulnerable. Not only is she young and female, but she also has a disability: she has a cognitive disability, with a debilitating brain disorder that causes autistic and obsessive-compulsive behavior. But that’s also why I’ve done my best to curb my nervousness. Children with autism don’t relate well to others, and I don’t want to discourage her attempts. I worry, though, that people will snub her or be cruel to her, or that she will trust the wrong person.
Happily, in our small town, when Jessica strikes up a conversation with someone, that person almost always responds kindly to her. She never expects to be rebuffed, but I am always waiting, tense, and ready to collect the pieces if it happens. “What’s your name?” she asks total strangers. “Do you have a dog? How old are you?” It always surprises me that people patiently answer her queries. They must sense something about Jessica, that she’s a little bit different. They never seem to expect me to stop her, although I’ve tried.
“We don’t ask adults that,” I say. “That’s a rude question, sweetie,” I tell her, to no avail. She asks anyway, and people tell her. When she is done with her inquisition, she will turn to me and say, “We know Michelle now,” or “That was Mrs. Crawford.” She moves them easily from one category to another: people we don’t know, people we do know. Strangers are merely people she hasn’t yet asked for their names. I’m less sure that finding out their names means we know them. But it’s a small, easygoing town, and I don’t fret too much. It’s not as if she goes about unsupervised or that she tells them anything too personal.
But talking to strangers in our small town is one thing. In New York City, where we visited last year, it’s another. I wasn’t surprised to hear her saying “Hello!” to every single person we saw as we walked the streets of midtown Manhattan, but I certainly wasn’t comfortable. On the first day, I decided not to try to stop her. This will be a good lesson for her, I thought. People will snub her—these are New Yorkers, after all—and then when we get back to the hotel room tonight, she and I will talk about the difference between people in big cities and small towns. And maybe she will learn not to talk to strangers.
But I never got a chance to have my discussion with Jessica. Every single person she said “hello” to said “hello” right back—the businessmen in their somber suits, scurrying from one place to the other; the gawking tourists with their cameras at the ready; the doormen standing at attention in their uniforms. She even said “hello” to the homeless people. She asked what they were doing there, and they told her. I’ve never asked because I don’t talk to strangers. One man on his cell phone stopped in his tracks and told her not only his name and age, but also his occupation and what he was going to do with his girlfriend over the weekend. As he strode off after Jessica’s grilling, I heard him say into the cell phone, “I have no idea who that was. Just a little kid.” Just a little kid . . . who doesn’t know better than to talk to strangers.
Later, we were at a corner waiting for the light to change, and Jessica greeted everyone there. Over the top of Jessica’s head, I met the glance of a casually dressed man with curly brown hair. “She’s autistic, isn’t she?” he said to me, with a directness that took my breath away. After all, he was a perfect stranger. I put my hand protectively on Jessica’s shoulder. “Yes,” I said. This is the kind of encounter I dislike, but I wasn’t telling him anything he didn’t already know.
His face smoothed into a look of compassion. “I work with children who have autism,” he explained. “It’s a challenge, isn’t it?” I felt something inside me weaken: a wall, perhaps, I never even knew I had built. Because I expected people to be indifferent to me, or to be judgmental, I never expected kindness. Not like Jessica, who always does.
The light changed. “She has a good mom,” the brown-haired man said simply, and walked away. I caught my breath. If he had thrust a bouquet of gardenias in to my hands, I would not have been as surprised. His words were like an offering, a gift, for which he wanted nothing in return.
“That was Mark,” Jessica said. “We know Mark now.”
“We sure do,” I said, and smiled.
Jennifer Lawler
Jennifer Lawler is a writer who lives in the Midwest with her adorable daughter, Jessica, and their lazy mutt, Jazmine. Visit Jennifer’s website at www.jenniferlawler.com.
On the Inside
What we see depends mainly on what we look for.
John Lubbock
I look like a monster. During a routine root canal last week, the dentist accidentally tore a blood vessel in my face, and the result is that the left side of my face is black and purple and swollen from eyebrow to throat.
While painful, the worst part of this mishap is the deep embarrassment at having my face look so monstrous. I hadn’t realized the shock of my bruises until my neighbor dropped by and literally jumped off my porch at the sight of my face, clutching at her heart and shrieking involuntarily.
“It’s not even a good story,” I told her, and explained about the dentist and the torn blood vessel. After a brief visit, I said good-bye to her, knowing she had never paid attention to our conversation because my face was so distracting. I was disheartened and embarrassed.
The embarrassment grew more deeply rooted when I took my son to kindergarten the next day. Upon seeing my face (which I thought was cleverly concealed by my hair swept over my face and the sunglasses I wore indoors), Noah’s teacher gasped. Expletives spewed forth, causing me to laugh, and she to slap a hand over her mouth. “I’m sorry,” she apologized for her involuntary cursing. “You look like someone beat the life out of you!” I explained what had happened and literally ran to my car, heading home to hide from all human contact.
For several days, I avoided contact with people other than my family, and my first foray into public in search of a video led to new humiliation and had me determined not to leave home again.
“Mommy, look at that lady’s face!” I heard the little boy’s voice behind me, and the heat rose in my cheeks as I instantly knew I was the freak show he pointed at. “Don’t stare,” I heard the mother whisper as she yanked the boy out of the video store so he wouldn’t have to see the scary-faced woman. I drove home, crawled into bed, and pulled the covers over my head, intending to stay there until I looked human again.
A couple of days later, I looked in the mirror and tried to view my face from a stranger’s perspective. The perfect circle of purple around my eye lent me the look of that dog on Little Rascals. The huge, swollen black and purple splotches along my cheek a
nd jaw, and the streaks of blue and green down my throat, were colorful and distracted from the fact that I wore no makeup, which was too painful to apply. I couldn’t have felt more insecure.
Sighing, I told myself, If my own children accepted this temporary ugliness, then what did I care what strangers thought. It’s just my face, after all—not who I am. It’s what’s on the inside that matters. I put on my sunglasses and headed to the bookstore in search of more boredom busters.
As I locked up my car and shook my hair down to cover my cheek, I realized my hands were shaking. This is ridiculous! I scolded myself. It’s just a bunch of bruises!
Trying to be invisible, I headed to the kids’ section to look for something my kids might like.
“Mommy, look at that lady’s face!” The words again brought the blush of embarrassment, and I wished the floor would magically swallow me up. I wasn’t prepared for the mother’s reaction.
“I know, honey. She looks like Shaley!” The woman actually sounded happy about this, almost like I did when I saw another deaf child like my youngest.
I turned to see who was so excited about my disfigurement and saw a woman, a little girl, and another little girl in a wheelchair, all staring at me. The little girl in the wheelchair had a facial deformity that made my heart ache for her. I don’t know what it’s called, but I knew she had a disease that made her life expectancy uncertain. I knew she was Shaley, and I also knew there was a lesson for me here.
“Hi!” I bent down and touched the side of Shaley’s face gently, fingers shaking. She had huge, sparkly brown eyes, and they shined with inner beauty that made me forget the face so obvious at first glance.
She reached a tiny hand up to me, past my bruises, and up to grab a handful of my red hair in her gnarled hand. Her touch was gentle, sweet, and careful.
“Pretty,” she said simply.
Tears stung my eyes as all at once I felt shame at myself and admiration for this brave little angel. She could see beauty in a place where others saw ugliness.
I grinned at her and said, “Thank you, Shaley.”
“Pretty,” she said again and touched my cheeks. By now, I was fighting to keep the tears from spilling. I looked at this tiny doll and knew she was freer than most people ever were. She knew what really mattered, and she had the courage to speak up and say it. She made me feel special, as if she looked into my soul with those huge brown eyes and deemed me pretty on the inside.
We said our good-byes, and I watched her mother wheel her away. I wanted to thank her, but stood rooted in silence and tears. I watched until they were gone, and then headed to my car and home. Shaley touched a complete stranger and put things neatly in perspective. My battered outside would eventually heal. Hers would not. But she showed me that what is true, what is really important, has nothing to do with our outside packaging. It’s on the inside.
Susan Farr-Fahncke
Dedicated to making a difference, Susan Farr-Fahncke is the creator of 2theheart.com, founder of the amazing volunteer group, Angels2TheHeart, and a busy author. With stories featured in several Chicken Soup books, she is also the author of the beloved Angel’s Legacy. She teaches online writing workshops, and you can sign up for a workshop and see more of her writing at 2theheart.com.
Broken-Down Signs
I am one of the last of a small tribe of troubadours who still believe that life is a beautiful and exciting journey with a purpose and grace, which are well worth singing about.
Yip Harburg
Signs are all around us. Signs point the way. They tell us what we’re allowed to do. They tell us where we’re not allowed to go. They keep us from getting lost.
This is a story about signs—all kinds of signs.
The story begins at the home of my folks, near the Lake Michigan shore. It’s not where I grew up, but it’s where my parents have decided to retire, and we’ve visited them often enough over the years that I guess it’s a bit of a “home away from home” for our family.
We used to visit quite often. These days, we don’t make it up there as often as we’d like. It hasn’t been easy to travel ever since our son, Evan—now four years old—was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan syndrome.
This year, the family—my wife Penni, our seven-year-old son Noah, Evan, and Evan’s nurse—traveled to Lake Michigan to visit my folks and get some much-needed rest and relaxation.
One afternoon just a few days into our vacation, my sons and I walked to a large community swimming pool. Since it’d been a while for all of us, we weren’t exactly sure which roads led to the pool.
Noah said, “Hey, Dad, I think we’re supposed to turn here.”
“The street sign looks like it’s been run down by a car,” I replied. “How do you know this is the right place, Noah?”
“Trust me, Dad.”
Well, he was right. The pool was just around the corner. That broken-down sign didn’t keep us from finding the pool, or from making a new friend that day—a little girl named Renee.
Actually, we met Renee’s dad first; my brother-in-law introduced us. He was about my age, wearing a T-shirt about Down syndrome. As other parents around us sunbathed and caught up on the latest gossip, I told him that I had a child with a syndrome, too.
In truth, I’d already noticed Renee, though I didn’t know that was her name. She was hard to miss; even though there were close to 100 kids in the pool that day, she sparkled. I liked that about her.
Her dad called her over to us, but she flew past. “Renee,” he said again. “Come here, sweetie. I want you to meet someone.” Renee’s fine hair framed her face, which had typical Down syndrome features. Her brown eyes glittered with life and intensity. When she spoke to her dad, her speech was a bit broken and monotonic, though he didn’t seem to have any trouble understanding her. He introduced her to Evan and me.
“Hi, Renee,” I said, as I got down on one knee. “Would you like to sing the Bumblebee song with Evan and me?”
We all three sat down, and I started singing the little tune. To my surprise, she jumped right in as though she had been rehearsing for weeks! As we sang, Evan—who doesn’t speak—let out an occasional happy squawk. When the song ended, Renee babbled excitedly. Because I had a hard time understanding her, I asked what she was trying to say. She amazed me by signing with her tiny fingers, “More.” My heart melted.
I signed back. “More music?”
She again signed with her fingers. This time she signed “please” by placing her hand over her heart and moving it in a circular motion.
When we left the pool that day, we’d made a new friend. As I started to push Evan’s stroller toward the exit, Renee ran up to me, tapped me on the back, and gave me a big hug and a kiss on the cheek. No words were spoken as we embraced, but the message was mutually clear. I turned away with a smile that matched the one on her father’s face. He didn’t wave as we left; he just nodded his head. I knew what he meant.
There’d been many a head turned that day around the pool . . . not toward us, but away from us. And I don’t know how many times I overheard kids asking their parents, “What’s wrong with them?” I guess people don’t understand sign language. Or maybe they just don’t like to look at people who seem to be broken.
As Noah, Evan, and I walked home from the pool, we ran into a woman we hadn’t seen in a year or two. Noticing our “language” of hand signals and obnoxious grunts, she squinted her face and asked, “Does he even understand what you are saying?”
“Yes,” I replied, just slightly offended.
I wanted to say, “I know he doesn’t speak . . . and I know he can only sign one or two words . . . and I know those signs aren’t done perfectly . . . but he does like to listen to singing . . . and he does like to go to the pool!” Hmmmppphhh.
Back at home, Evan and I sat on the front porch, swinging in the creaking wooden porch swing. We
let the warm lake breeze put our souls to rest. As we rocked together, I wondered about how we communicate our wants and needs, and about how sometimes things just seem to come out of our mouths.
And I thought about some of the things that have come out of people’s mouths upon meeting Evan for the first time:
“How do you know what he’s saying?”
“Does he love you?”
“Does he like to play?”
“How do you know if he’s crying?”
“Does he even know he’s sick?”
“Is he broken?”
For each question asked, I could write so many heartwarming stories about Evan that the book would never end. Does Evan speak? Yeah, I think so. When a wife looks at her husband, puts one hand on her hip, taps one foot, and slightly cocks her head, what does it mean? Ahhh, any guy knows! She’s mad about another dumb thing he’s done. You see, all communication is not verbal.
Renee and Evan speak a language made up of imperfect and incomplete signing, verbalizations that are unintelligible to most people, facial expressions, and body language. Very few actual words, if any, are required. I guess Renee’s dad and I have the gift of being able to look past the broken signs to the heart of the message. Along the way, I’ve met a number of people—mostly parents of kids with special needs—who have this same gift.