Chicken Soup for the Soul: Children with Special Needs (16 page)

Today, he is singing for God. I ask him every now and then just to check. He will, at any given moment in the day, break into an impromptu “ladies and dentamen (ladies and gentlemen) presenting” . . . usually himself. In his unlimited imagination, Bennett is not only a rock star, but also a doctor, chef, teacher, and talk-show host. He spends much of his time with a real or makeshift microphone in hand (occupational therapy at its best). Simple tasks of the day are announced and presented to the imaginary studio audience that lives at our house. Pouring a cup of milk or helping him to sit up is frequently followed by “Mama, ladies and dentamen.” Most anything is reason for applause and accolade. Homework is usually done as a special segment on
Live with Regis and Kelly.
He’s Regis. I’m Kelly. An
American Idol
expert extraordinaire and future idol himself, Bennett has entertained nurses live from his hospital bed.

I treasure these moments. I treasure every word. I treasure every breath.

He shoots that smile at me again. Minutes into the sermon, he whispers, “Mama, more music.” He didn’t always have the breath support to whisper.

We were told Bennett would not walk or talk, along with an overwhelming list of neurological and medical challenges. In addition, due to respiratory issues, there is a high infant mortality rate for children with Joubert syndrome. When the doctor was finished, his words had not only ripped through us, but through the dream of what we thought was to be.

I shoot a smile down at my squirming virtuoso as I think of how this six-year-old, thirty years my junior, has been my teacher.

After we were given the news, my husband and I excused ourselves to the hospital chapel. Later in the neonatal intensive care unit, Jeff looked down at our tiny gift, camouflaged by tubes and wires, and said, “I just want him to know I am his daddy, and I love him.”

Bennett is nearly seven years old. He gives us more love than we can hold. He is our dream come true. We have walked hand in hand with sorrow and with joy, many times simultaneously. There have been many nights when I greeted the moon and the sun without a closed lid in between, some by a hospital bed, some through prayerful tears as I cry out on behalf of our suffering son. And we have seen miracles.

We have seen Bennett in the emergency room go from nonresponsive and pneumonia blue to pink and shooting that smile at a surprised ER doctor who had minutes earlier prepared us for the worst. We have seen mystery spasms that caused great struggle brought under control. We have seen provision for Bennett’s care financially and through gifted specialists. We have also experienced comfort and support from friends who go above and beyond. We have heard Bennett put his first sentence together, an ironic “I luh lou (I love you)” for Daddy. Nearly every day, I watch as he is wheeled into first grade, where he is doing well. And recently, we watched with great pride as he took his first steps in a walker. (He might as well be standing on a podium, gold medal lighting up his chest with the American anthem blaring overhead. He has put in as much effort and accomplished as much by pushing himself down our hallway.) We have watched him grow into an amazing little person who shows love to others freely. It was once thought he may never lift his arms over his head. These are the same arms that wrap around my neck and pull me in close every day.

Bennett’s body may never catch up with his mind and heart. Perhaps the biggest miracle is knowing it does not have to.

Our life is different from many, full of doctors’ appointments, therapies, hospital stays, and advocacy. Everything takes great effort, sometimes painstaking effort. The privilege of caring for Bennett is a large part of our daily lives, but a small part of who he is.

Teacher Bennett has shown me that hope does not disappoint, that love never fails, and to take nothing for granted. I’ve learned there is a difference between completely relying on God’s strength and relying on my own strength to hold on to him. I now know the greatest calling we have is to love and be loved. Bennett has more than enough ability to fulfill this calling. In six years, he has touched more lives than many do in sixty.

“Bennett, listen.” I lean down in a whisper. “The pastor is talking about loving others.” Sweet pea looks up, with arms raised to hug, and says, “I luh lou, Mama.”

After the service, a lady approaches me. She had been watching us. I think she called me remarkable, encouraging words from someone kind enough to not keep them to herself. I thank her, and think,
I am a mom who loves her son.
I’d like to think there is nothing significantly remarkable about that, but I appreciated the encouragement nonetheless.

As I carefully carry Bennett down the stairs from the balcony, I tell him he is remarkable. He smiles and squeezes me a little tighter.

Bennett, ladies and dentamen.

Hillary Key

Hillary Key
is a full-time mom, and lives with her husband, Jeff, and son, Bennett, in Roswell, Georgia. She received her bachelor’s degree in graphic arts from the University of South Carolina in 1992. Hillary had two short stories published in 2006 in
Special Strength for Special Parents.
She enjoys painting, reading, and being a daily guest star on
The Bennett Show,
broadcast “live” from her living room, produced by the imagination of her son. Bennett, the host and creator, is doing extraordinarily well. He is enjoying good health, sweet friendships, and a new stage built into the corner of his room by special fans.

Speech Therapy

E
very survival kit should include a sense of humor.

Anonymous

When my son was five years old, he displayed a variety of autistic behaviors and was classified as “speech and language impaired” by the school district. The school staff and I worked hard to achieve a comfortable and collaborative relationship.

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.”