Someone forgot to mention that when my son was finally potty-trained at age nine, there would be few people who could understand the significance of such an accomplishment, and even fewer with whom I could actually share it. Accomplishments of any size, their true worth known only to me, would bring quiet celebrations between my son and me.
Someone should’ve mentioned that autism is messy! Wallpaper’s meant to be shredded, bathrooms are designed to be flooded, walls are bare in order to smear stuff on them, washable paint really isn’t, and more food will actually be crushed and dropped than eaten.
I wish someone would’ve mentioned that autism is extremely expensive! Doctors, therapists, medications, supplements, conferences, and sensory equipment are only the tip of the iceberg. I could not have guessed that my child’s disability would allow people to cross our path in life who otherwise would not have, and that such people would willingly respond to a child in need.
Someone should have mentioned that each time a child with autism initiates or engages in a reciprocal hug, that feeling that you had when you held him for the first time comes back time and time again.
And they forgot to mention the day my son was diagnosed with autism that the triumphs over this disability would far outweigh the tears, that laughter would eventually ease the sense of loss, and that sheer faith would allow me and millions of other parents to fall into bed exhausted each night, only to get up the next day eager to discover what else they forgot to mention.
Sandy Sotzen
Sandy Sotzen holds a master’s degree in education and has been a special-education teacher for twenty-one years. Sandy is the proud mom of two boys, ages fifteen and twelve, the youngest of which is identified with autism. She can be reached at [email protected].
2
GRATITUDE
The greatest gift you can give a child is the essence of your true self.
Fred Rogers
Is That All?
It is only with the heart that one can see rightly; what is essential is invisible to the eye.
Antoine de Saint-Exupéry, The Little Prince
Immediately upon giving birth to her fifth child, Nelma’s arms were empty. The hospital staff whisked away the baby before she could see him.
“I want to see my son,” Nelma insisted.
“You need to understand that there are problems with the baby.” The doctor explained that perhaps Nelma and her husband should consider an institution for their newborn.
“I want to see my son,” Nelma demanded.
So the new bundle of babe was brought and placed in his mother’s arms. Nelma smelled the sweet new baby smell of him. She cooed to the little boy and cradled him to her heart. Then, ever so carefully, she unwrapped his blanket. There lay her infant, born without legs, his hands and arms not fully developed. Nelma took it all in, caressed his soft new skin, and smiled into his trusting eyes.
“Oh,” she smiled softly, “is that all?”
And so Jerry went home with his mother to the welcoming arms of his family. There were struggles along the way as there are for all families, yet Nelma continued to love her children and cover them with prayer. One of seven children, Jerry was treated just like everyone else in the family with the exception that there was no chair at Jerry’s place at the dinner table, to allow for his wheelchair. When it was Jerry’s turn to wash the dishes, he washed the dishes.
When a man from the circus came to ask if Jerry could be part of their freak show, Nelma and her husband took the man by the scruff of his neck and threw him out of their home. “Jerry is not a freak,” Nelma informed the visitor. “Jerry is our son.”
Years later, Jerry prepared to move away to college. A friend from church, Barbara, was overjoyed that Jerry would attend the same college where her daughter, Kathi, was enrolled. “Be sure to look her up when you get there,” Barbara said.
Nearly a year later, Kathi made an impulsive trip home. In the familiar surroundings of her mother’s living room, Kathi’s confused emotions exploded into tears. “Mom, Jerry wants to marry me. I know he loves me, and I love him. But, Mom, Jerry doesn’t have any legs. Can you marry someone without legs?”
Barbara’s arms and calm voice encircled her grown daughter. “Honey, since you were young I have prayed for just the right husband for you. I prayed he would be a thoughtful, compassionate man. I prayed your husband would be strong in character and integrity, that he would be a leader in his home, that he would provide well for you and your children. I prayed your future husband would know God, that he would be an honest, hard worker, and that he would love you and be a tender life partner. I prayed you would be best friends, as well as husband and wife.”
Barbara paused to lift Kathi’s chin so their eyes met. “But, Kathi, I never prayed he would have legs.”
With the blessing of their parents, Jerry and Kathi were married. They have five beautiful children, and every other one has red hair like their mother.
One day, Jerry and Kathi’s oldest daughter invited her school-age friend to come for dinner. Partway through her hot dog, the guest turned to her young hostess. “Your dad doesn’t have any legs,” she reported.
Anna paused, and then peered under the dining table to study her dad parked in his wheelchair. Returning upright, she regarded her friend. “Your dad doesn’t have a wheelchair,” she replied.
All too soon, Jerry escorted his eldest daughter down a long church aisle to meet her groom, a young man she had grown up with in church. Next, Jerry and Kathi welcomed a daughter-in-law and the joyous arrival of grandchildren.
A lot of credit for the success of Jerry and Kathi’s family is directly attributed to Jerry and Kathi’s mothers. Nelma saw not her son’s disabilities, but his potential. And Barbara saw not the wheelchair that held the man, but the answered prayers within the man.
PeggySue Wells
PeggySue Wells is the author of several books, including What to Do When You Don’t Know What to Say, and What to Do When You Don’t Want to Go to Church. She is an award-winning writer and speaker. Her articles appear nationally in newspapers and magazines. Today, Jerry is a teacher. As a public school resource specialist, he works with seventh-graders with learning disabilities. Jerry serves as an elder at Open Door Christian Church in American Canyon, California. As vice president of the Institute of Abundant Living, Jerry is a popular guest speaker, sharing his story and the stories of others who have overcome great challenges. Contact PeggySue at www.peggysuewells.com.
The Little Boy Who Waves
“ Hope” is the thing with feathers
That perches on the soul
And sings the tune without the words
And never stops at all.
Emily Dickinson
On the first day of school, the yellow bus with the squeaky brakes stopped in front of our house. The attendant took my child’s hand as he made his way up the steps into the bus. She told him, “Good morning . . . this is your seat.” I stepped away from the door and went to the window where he was sitting. I tapped on the window, trying to get my son to look at me. He wouldn’t. The fan on the dashboard had caught his attention, and there was no distracting him from that. I waved good-bye to him anyway.
Time went on. We had our routine down, Brandon and me. I would guide him up the stairs of the bus, and then go to the window to try and get my son to look at me. He never would. I simply could not compete with the fan on the dashboard that fascinated him so. But I kept waving.
One day, I noticed the other children sitting behind my child. One child would stare out the window as he rocked back and forth. I wondered what he was thinking. He had such a serious, far-off expression on his face. One morning, I noticed another child a couple rows behind him. As I was waving to my son as the bus left, this particular child was waving back at me and smiling. And so it became our new routine. Each morning after I would tap on the window and wave to my son, I would then turn and wave to this little boy. He actually appeared to be antici
pating his turn to be waved at. I admit I am very jealous of this boy’s mom. Every morning she gets a wave and smile from her son, and my son doesn’t even know I am there waving at him. Once my son gets on the bus, his focus turns to the fan on the dashboard. Yet this little boy I now wave at gives me hope that someday my child might notice me, and wave to me with a smile. It is a very bittersweet moment each morning, but hopeful, as well.
Many mornings I have walked back into my house in tears, pleading with God to make my child be more like that child. One morning, I woke up on the wrong side of the bed. After I grumpily handed my child off to the attendant, I turned to go back inside. I didn’t tap on the window to wave good-bye to my child—or anyone else’s. As I got to my front door and was about to open it, something made me turn and look at the bus. There it was—a panic-stricken face pressed against the school-bus window with a little hand waving frantically at me. A wave of guilt spread over me. I hastily stepped back and put my hand up to wave—but it was too late. I don’t think the little boy who waves saw me. Never again did I forget to wave to him. And I truly miss that little boy when he’s not there to wave at me.
I was sick one morning, and my husband had to do the bus routine for me. As I was giving him instructions as to what to put in the backpack and so on, I told him about the little boy who waves in the sixth row and made him promise me he wouldn’t forget to wave at him. “Why do you want me to wave at someone else’s kid?” he asked me. I didn’t have the energy to explain my feelings to him right then—that the little boy was my hope, my inspiration, my prayer for my own son. That I do it because, for that one moment, I imagine my son being the little boy who smiles and waves good-bye to me each morning. Instead, I merely replied, “Just please . . .” My husband promised he would.
I would never trade my son for anyone else’s. I thank God every day for my child and what he can do. But inside of me, I do long for the day that the “little boy who waves” will be mine.
Another school year came and went. The little boy in the sixth row is no longer on the bus, but still I wave at my son in the hope that he will wave to me. One day, out of the blue, the attendant said to me, “You know, it’s the cutest thing—whenever the bus starts moving, and your son is humming and watching the fan, he will hold his hand beside his leg and start opening and closing his fist like he is waving.”
Never give up hope. Have faith that what may seem impossible may just become possible someday . . . because you never know when the little boy who waves could be yours.
Michelle M. Guppy
Michelle M. Guppy is a wife, mother, and autism advocate. But more than that, she is constantly amazed at the inspiration received from watching her son grow and learn and do things that she was told, or that she thought, would never be possible for him! Brandon inspires her to give faith and hope to other parents through her writings. Michelle can be reached at [email protected] or through her website at www.TexasAutismAdvocacy.org.
All She Has
We don’t see things as they are. We see them as we are.
Anaïs Nin
“Hey, honey!” I said, hugging my seven-year-old, Jean Prince, as she got off the bus. “How was school?”
“Well, not so real good,” she replied, looking glum. “Everyone has their pictures on the Reading Bulletin Board but me. I never get my picture up, not for math or reading or anything.” Her shoulders slumped, and her chin began a definite quiver.
I’d like to believe that, with enough educational therapists, visits to the doctor, experimenting with different medications for ADHD, and drill, practice, and patience at home, I can turn my Jean into a valedictorian, a teacher’s “dream child,” the whiz kid who gets everything right and never colors outside the lines.
But I can’t. And every failure is yet another blow to me, as well as to Jean. Taking a deep breath, I turned on the “building self-esteem” mode. “Well, hon, I’m sorry. But I’ll bet something good happened in school today, didn’t it? What was the best thing that you did today?” Jean took her own sweet time, thinking things through. She wasn’t, however, on the verge of tears anymore.
Finally, she brightened a bit and said, “I gave my bunny from the prize box to Jeffrey when he fell down and cried ’cause his knee bled. Mrs. Lawrence said she was proud of me, and she put my name on the ‘Character Counts’ tree.”
“Sweetie, that’s great!” I blessed Mrs. Lawrence in my mind yet again.
The next day, we were reading the weather report in the paper, ever mindful of the science curriculum, which this month was focusing on weather. As I was trying to help Jean sound out “partly cloudy,” she grabbed the paper and shrieked, “Mommy! Mommy! Why is that lady crying, Mommy? She’s holding those two little kitties, and she’s crying! Why?” I sighed. We were distracted from the task at hand yet again—something that happens with Jean on a minute-by-minute basis.
“Well, let’s read the story,” I replied, hoping to turn the task into yet another school lesson. “It says here that the lady is Mrs. Hamilton, and she lost her home yesterday when lightning struck it.” I read on, and the story was indeed a heartbreaking one. The poor woman from the small town of Monroe had lost everything—even her pet dog—and had no insurance.
“Hmm, Jean,” I concluded. “It says here that Pastor Barry (our minister) is taking donations for Mrs. Hamilton. We’ll make sure to give him a check tomorrow at church to help her out, okay?” Then I went off to locate Jean’s elusive three-year-old brother, James Moses, and begin dinner.
The next day, as I was trying to herd the crew out the door for Sunday school, Jean suddenly wheeled around. “Wait, I’ve got to get my stuff!” She came back with her special heart-shaped box and a homemade card. I strapped James Moses in the car seat and took off down the drive. When we got to church, Jean didn’t head straight to her Sunday school classroom. “I’ve got to find Pastor Barry!” she exclaimed. “Where is he?” It wasn’t until then that I bothered to check out Jean’s special box and card.
The card read, “Mrs Hamitlon, I am saveng mony for yuo. I pray for yuo. I love yuo. Jean.” Inside the box was $8.54—every penny the child had saved from her allowance for the past month. The fifty cents she saved by not getting ice cream one day at school. The dollar she got for picking up all her toys and putting them away. The dollar her Meme sent her in the mail. The change from her last big purchase, a Barbie doll. The dollar and some change she’d been allowed to keep when she helped me clean out the car.
The pure magnitude of the gesture literally took my breath away. This was truly the widow’s mite—every coin the child had in the world, wrapped up in her most special keepsake box, and accompanied with a card decorated with rainbows, a happy sun face, two smiling kitties, and every happy image the child could draw, along with as many words of encouragement as she could get down on paper. This was so much more important than reading or math. Her future? The sky’s the limit.
Connie Ellison
Connie Ellison has taught English in Virginia’s public schools for twenty-eight years. She is the author of the memoir, Any Road: The Story of a Virginia Tobacco Farm. Connie lives in Elon, Virginia, with her husband, Andrew, and two children, Jean Prince and James Moses. Jean is now a third-grader and an active member of Elon Presbyterian Church. This past year, Jean raised over $300 for her school’s Jump Rope for Heart for the American Heart Association, in memory of her best friend, Ian Mapes, who died of heart complications last August.
One Brief Hour
There is no better way to thank God for your sight than by giving a helping hand to someone in the dark.
Helen Keller
For one brief hour on a sunny June afternoon, my life intersected with a nineteen-year-old young man. He walked away from that hour with his life changed forever. I walked away with an empty leash and a full heart. Two years before, my family and I had just returned from living overseas in Hong Kong. We had lived in a forty-four-story high-rise for four years, and were
now back to our American lifestyle, backyard included. All that was missing was a dog for my eight-year-old son.
My husband, not a dog lover, thought he had found a way to table this discussion indefinitely. “Find a purpose to having a dog, son, and then we’ll talk.” That very week, Tad brought home a permission slip for a field trip to travel to Guide Dogs for the Blind (GDB) in San Rafael, California. Being a dog lover, I volunteered to chaperone. Voilà! We had found a purpose. Tad and I attended the weekly puppy meetings, filled out paperwork, studied the manual we were given by GDB, and within a month or so, we were on our way to pick up a little eight-week-old yellow Lab male puppy named Arbor.
About that same time, in Olathe, Kansas, nineteen-year-old Jonathan Hill began to fill out his paperwork to apply for a guide dog. Nearly blind from a rare syndrome called Bardet-Biedl, a genetic disease that results in progressive blindness, Jonathan didn’t let his poor vision limit his life. Not by a long shot. An Eagle Scout, avid hiker and camper, and a college student, Jonathan had big plans for life with his future guide. After completing the lengthy application, Jonathan had to wait for Guide Dogs for the Blind to contact him, meet him, and see if he met their qualifications. He was selected, so now his job was to wait until a spot opened up for him in class.
Meanwhile, back in California, our first objective was to help Arbor discover the joys of using the great outdoors for his potty. The next objective was to start basic training: sitting, laying down, waiting, and not chewing up everything that got close to his tiny, razor-sharp teeth. And, of course, we gave him lots of love. Every Tuesday night, we packed Arbor into the car and zoomed off to our weekly puppy-training classes.
Chicken Soup for the Soul: Children with Special Needs Page 6
