One day, I received a telephone call from my son’s speech therapist with whom I had a good relationship. She was very upset because my son appeared, for the first time, to be agitated and frustrated to the point of insubordination. She explained to me that she was trying to work with him, but he kept saying, “I don’t want this sh-t anymore!” It only got worse when the therapist tried to keep him focused on the task at hand. He kept repeating, “I don’t want this sh-t anymore!” Finally, in a display of exasperation, she said my son picked up his papers and threw them down, screaming, “I don’t want this sh-t anymore!” The therapist apologized and said she had to bring my boy to the principal’s office to be written up for his behavior.
I was quiet for a moment, trying to discern what might have caused my son to become so uncharacteristically disagreeable.
Suddenly, I realized what must have happened. I asked the therapist where my son was at that moment.
The therapist replied that he was outside playing in the courtyard where she could see him from the phone.
I asked her if he was doing anything else or if she noticed him pulling at the collar of his shirt.
“Yes, he’s been pulling at his shirt all day,” replied the therapist.
I could not help but laugh. I told the therapist what happened earlier that morning when he was getting ready for school.
I explained that one of his autisticlike behaviors was a sensitivity to clothing labels. In response, I had been cutting the labels out of his shirts, but sometimes the remaining pieces still irritated him.
The shirt he was wearing that particular day was bothering him, but because we were late for the bus stop, I told him he had to leave it on.
Apparently, my son was not saying, “I don’t want this sh-t anymore!” He was saying, “I don’t want this shirt anymore!” And then he got very frustrated when nobody understood.
The speech therapist felt awful, and said she would go outside right away and apologize to him.
Before we hung up, we both had a good laugh when I said, “I guess he still needs some help with his articulation!”
Karen Brill
Karen Brill’s son is now seventeen years old and will be graduating from high school next year with a standard diploma. He plans to work as a paraprofessional with elementary-school students who have special needs, and to start his own business, “Big Matt’s Auto Detailing.” Contact them at
[email protected] Reprinted by permission of Off the Mark and Mark Parisi. © 1999 Mark Parisi.
Toss of a Coin
A person’s a person, no matter how small.
Dr. Seuss, Horton Hears a Who
It was a hot August day when Mike and Jeff sat down in the shade of a maple tree to assign students to their respective classes for the coming year. This year, more than seventy twelve- and thirteen-year-olds were enrolled to receive the lessons and experiences of grade seven. But Mike and Jeff were no ordinary teachers. Rivaling their love of teaching was their love of sport. And thus, when the time came to assign students to their respective classes, Mike and Jeff did what any good captain of a team would do—they flipped a coin. Their plan was to assign the first pick to the winner of the coin toss, then alternate picks until all seventy students had been placed.
Mike held the coin firmly in his grasp and nodded to Jeff. When Jeff indicated he was ready, Mike caused the coin to flip end over end through the summer air. As the coin reached its peak, Jeff called “heads.” With the smooth precision of someone skilled in hand-eye coordination, Mike grabbed the coin out of midair and placed it onto the back of his hand. Both waited with mock impatience as if something of extreme importance depended on the outcome. Little did they know how important this decision would be.
As Mike removed his hand from atop the coin, Jeff yelled out with exuberance, “Heads, I get first pick!” Despite Mike’s plea for “two out of three,” Jeff began reviewing the names of the students on the list. “Now who shall it be?” Jeff thought out loud. “Who will be the captain of my team?” After seemingly endless pondering, Jeff’s eyes rested on the name of Joshua Kuntz.
Joshua was not your average student. Josh began seizing at five months of age following his immunization shot. The seizing increased in frequency and duration, despite the efforts of the neurologists at the local hospital. By the time Josh was four, he was seizing twelve to fifteen times each day, with seizures lasting up to twenty minutes. Seizures of this length deprive the brain of oxygen. The result is significant neurological damage. By the fall of his grade-seven year, the effects of the seizing had reduced Josh’s capacity to the level of a two-year-old. Having Josh as a student would mean constant vigilance to keep him safe, as well as additional assistance to support his learning. And yet Jeff’s eyes remained on Josh’s name. Then Jeff raised his eyes to meet Mike’s. In a soft, clear voice, Jeff declared, “I choose Josh.”
Mike was a relatively new teacher to the school. He did not know each and every student, but Mike did know Josh. Josh’s disabilities—both intellectual and medical— were well known at the school. “What?” exclaimed Mike in disbelief. “I don’t understand. Of all the students you could have selected, why would you choose a child with severe disabilities for your first pick?”
Jeff smiled at Mike’s question. It was not an unusual one. As a matter of fact, most people who meet Josh for the first time see only his “disabled” parts. Jeff knew it took time to see beyond the disabilities and notice the parts of Josh that are wonderful and beautiful. Jeff responded, “Mike, I’ve been around the school for a few years, and I can’t help but notice Josh. But even more important, I notice how the other children respond to Josh. I notice how they eagerly greet him as they pass him in the hallways. I notice children rushing to complete an assignment to earn the opportunity to read to Josh while the others finish. I notice boys and girls alike taking turns holding Josh’s hand as he is wheeled in his chair. I notice children modifying a game so as to include Josh. I notice children rubbing Josh’s back as he rests following a seizure. But most important, what I noticed is that the children are kinder and gentler when in Josh’s presence. I believe having Josh in my class makes it a kinder and gentler place for all children to learn.”
And so, on that hot August day, a wonderful thing happened under the shade of a maple tree. A young child whom many saw only as disabled came to be valued for his contribution. And what was Josh’s contribution? Creating an opportunity, by way of his disabilities, for others to express their caring, compassion, respect, and dignity.
Anyone who happened to visit that particular grade-seven class noticed something different. They may not have known that the toss of a coin and the selection of a young student with disabilities were responsible, but the spirit of caring in the room was unmistakable.
Ted Kuntz
Ted Kuntz is the father of Joshua and author of Peace Begins with Me. This inspiring book captures the wisdom Ted acquired in making peace with his son’s disabilities. To contact Ted or to order his book, visit www.peacebeginswithme.ca. To learn more about recognizing the contributions of individuals with a disability, visit PLAN Institute for Caring Citizenship at www.planinstitute.ca. Josh is now twenty-two years old. He lives in a home in Coquitlam, British Columbia, a suburb of Vancouver. While his seizure disorder has improved, the seizures have never been completely controlled. Josh enjoys going for walks with his dog, Miah.
Miniature Angels
The language of friendship is not words but meanings.
Henry David Thoreau
“I want a friend!” my five-year-old’s clear blue eyes showed the pain of rejection. Noah is deaf, and the past couple of years have begun to show what the future holds for my little guy.
The first few years of his life, Noah had many friends in our neighborhood. Small children don’t talk a heck of a lot and are content to simply play. As time passed and Noah got to the age where speech and hearing were a noticeable part of “hanging out,” his friends started r
ealizing he was different. Soon, no one came to play with my tiny son, and he too began to understand he was different.
My heart has ached, and I have spent endless hours in tears, begging God to send him a friend. “Just one,” I have prayed. “If he just had one buddy, I know he would be happy.” I have prayed this prayer for a very long time, but my little son has had to be content with only having friends at the school for the deaf, where he attends preschool. Noah has lots of friends at school, and they are all deaf like him, so this has been a blessing. But the children at school come from far and wide, and none live near enough to “hang out.” It’s just not the same when you’re five.
Noah recently began the heartbreaking hobby of writing and leaving mail on the porch for his “friends.” He tapes his own toys to the notes, thinking that he can somehow make friends this way. I often have to sneak outside to retrieve his notes so that he thinks someone is getting his messages of friendship. And I have to admit I have even “forged” notes left with stickers for him, so that his excited trips to the front porch the next morning would sometimes net him a feeling of having an unseen pen pal. It breaks my heart. This beautiful, hilarious, kind child deserves to have a friend.
But today was different. I got a miracle—in fact, three of them.
My phone rang, and I was distracted with a long-distance friend, catching up with each other’s lives. I didn’t notice Noah slipping out the front door.
It wasn’t until my sixteen-year-old came home for lunch that Noah’s absence was known. Panic-stricken, Nick and I scoured the house, yard, and garage . . . no Noah.
As I searched the house again, my heart pounding with a million frightened thoughts flitting through my brain, I began to tremble. A child off on his own is scary enough, but a deaf child poses hundreds of dangerous scenarios that gripped me in a panic.
“I found him!” Nick yelled from around the side of the house. “You have to see this, Mom.” I could hear awe in my teenager’s voice, and I hurried around to see. I couldn’t believe my eyes at first. I thought I was hallucinating.
A few houses down the street from ours, four children were playing gleefully. One of them was Noah. My neighbor runs a day care, and three of her charges were in the front yard, dancing and jumping and doing little-kid things—and Noah was right in the middle of it.
I watched with tear-filled eyes a scene that most mothers see every day, but that I had dreamed of and prayed hard for, for the past two years. Two little girls and two little boys who looked enough alike to be brothers chased each other around the trees, laughing, falling, and giggling, and generally having a silly time of it. Tears slid down my cheeks.
I watched from a distance, and sheer joy filled my heart. Three little kids, who had no idea what a gift they were giving a little boy who was deaf, looked like miniature angels to me. My heart just filled with gratitude. Watching them, you couldn’t tell Noah was any different, and his laughter rang with the exact same impishness as the others. I absolutely wanted to kiss and hug those three children.
I let them play until lunchtime, at last walking down the street to retrieve my child like a million other mothers do a million times a day. I felt like I was floating, and my grin was greeted by four chubby, dirty, and happy faces.
“Hi! I’m Noah’s mommy,” I greeted them. I wanted to empty out my purse and give them all my money and credit cards.
“Is that his name?” the little girl in pink inquired of me. “I’m Jessica, and she’s Carissa, and he’s Nathan.” The little hostess made introductions all around.
“Yup, Noah can’t hear, though. His ears don’t work very well.” I tried to squelch the visions of rejection as I shared this news with Noah’s new friends.
“We know, but he can CLIMB!” was the simple response. My son was proudly demonstrating this skill for her. Not missing a beat, the same little girl asked, “Can he jump on the trampoline with us?” Children are amazingly uncomplicated. Overlooking what Noah couldn’t do in favor of what he can do was a beautiful little lesson all in itself. I loved this little girl.
It was time for Noah to come home, so we made plans for another play date. Noah waved good-bye, started off for home, and then turned back around. “Hug?” he signed to the mini-angels.
I explained the sign to them, and they each stepped forward to hug their friend. The tears threatened me again, and we made a hasty retreat before I embarrassed him.
“Bye, Noah! Come over later!” followed us home. Noah looked up at me, his blue eyes huge, and with a priceless grin signed “friends” to me. Holding his little hand in mine, I said a silent prayer of thanks for three miniature angels.
Susan Farr-Fahncke
Noah is now a happy nine-year-old and is active in Scouts, swimming, and art. He recently won his very first writing contest. He wrote about being thankful for his family and won a college scholarship! Dedicated to making a difference, Susan Farr-Fahncke is the creator of 2theheart.com, the founder of the amazing volunteer group, Angels2TheHeart, and is also a busy writer and mom of four. 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 what her readers fondly call “Noah stories” at 2theheart.com.
Milestones
Patience makes lighter what sorrow may not heal.
Horace
Life presents many milestone moments. Among the biggest is high-school graduation day—a sea of smiling faces, fond memories, hopes, dreams, and new challenges to face.
The graduation of the class of 2000, the first graduating class of the new millennium, was to be such a moment for Melissa. Instead, it would be one of the many milestone moments we would grieve after her death. But Graduation Day 2000 also served as a reminder that, while it may never be the same, life does go on.
Kelly was only seventeen when Melissa was born. She and her young husband, Tom, took their parental responsibility very seriously. Kelly left school thinking she could always finish later. Tom got a good job to support his new family. It seemed that everything would be fine, until they got the news that Melissa had cystic fibrosis, a terminal illness for which there was no cure. It was a devastating blow, but they found strength in each other, and Melissa was the joy of their life.
I met Kelly when Melissa was about three years old. Our husbands worked together, and we became close friends. Melissa dubbed me her “second mom,” and we quickly developed a special bond that I will always treasure.
Six days after Melissa’s fourth birthday, she got a baby sister. We prayed that Amanda would be healthy, but she, too, had cystic fibrosis.
Barely twenty-one, with two terminally ill children, Kelly’s days were filled with hospital visits, medication, and treatments for the girls. Returning to school was the furthest thing from her mind. She was totally devoted to raising her beautiful daughters. I continually marveled at what a wonderful and selfless mother she was.
The years flew by, and there were many milestone moments to cherish. But there was also the sad realization that there would be many more milestones that would probably not come to pass.
In 1994, Melissa was twelve, and Amanda was eight. Amanda had been in and out of the hospital for most of the previous year. Her health was steadily declining, and the doctors had tried to prepare the family for the worst— as if it is possible to prepare for the loss of a child.
Then, in March, Amanda seemed to be improving and was home from the hospital when Melissa grew suddenly ill. She had been laughing, happily riding her bike on Friday. On Sunday, she was in the hospital, fighting for her life. By Wednesday, she was gone.
Shocked and grieving, Tom and Kelly tried to pull themselves together for their youngest daughter. They knew how frightened she must be, knowing that her sister had succumbed to the disease that had held her captive in a hospital bed for much of her life. They were frightened, too—for Amanda, for each other, and for the life that woul
d never be the same again.
Amanda died less than three months later. I will never forget the words Kelly said to me, numb with grief, at Amanda’s funeral. “I am a mother without children. What am I going to do now?”
Kelly had been a full-time mom her entire adult life. She had tried working out of the home a few times, but with the girls in and out of the hospital, a job was low on her priority list. Now she felt she needed to work. She knew that if she stayed home, she would find herself lost in sadness. But she wasn’t sure what she could do. She didn’t have much job experience, and she had never graduated from high school. Fear and self-doubt flooded her thoughts, but then she thought about her daughters and how they had faced so many challenges.
Drawing strength from their courage, and with the support of her husband, family, and friends, she quickly found a good job that she enjoyed. That job led to a better one, and she was soon in a management position. But, despite her advancing career, Kelly still felt a deep void in her life.
Work is a good distracter, but it doesn’t heal the deep wounds of grief. It is said that time heals, and it does, but never completely. Holidays and other special occasions serve as constant reminders of the part of life that is missing. Milestone moments, like sweet sixteen, prom night, and graduation, are especially difficult.
Kelly had been dreading Graduation 2000. Several of Melissa’s friends had stayed in touch, so she received invitations to attend the ceremony. Kelly knew that attending would be too difficult, but she felt a strong need to do something. Then the idea hit her. She would graduate for both of them!