Chicken Soup for the Soul: Children with Special Needs (37 page)

Even when Jim was calm, he was nearly impossible to understand. In the months that we had gotten acquainted, I had become pretty adept at interpreting him, but in this instance, Jim had as much clarity as I have ever heard.

“I’m . . . skip . . . ping!”

Having feared the worst in his absence, I should have been relieved. Instead, I surprised myself by sticking to the standards I have set for all the students in my program.

“You’re skipping?! Skipping your computer class?”

Jim rocked violently back and forth in affirmation. Then he stared back up at me with that same defiant stare, his lower jaw protruding and trembling ever so slightly.

“Jim! Why on Earth would you skip your computer class?!”

Again, he struggled to communicate. His head slammed back into his headrest, mouth and eyes wide open, then lunged forward again as if he were trying to escape his chair. Steadying himself, he focused his face, reddened with emotion, on mine. He pushed the words out, past the tears that were welling in his eyes.

“Because . . .” he struggled. “Because . . . I . . . finally . . . could . . .”

His face held the same defiance, chin out and eyes fixed on mine. In those eyes I could see the pride that had waited sixteen years to come spilling out. I suddenly realized how much the independence we had sought for Jim meant to him; I always preached it, but before then I had never
felt
it. It took me a couple of seconds before I could respond.

“Go to the office.”

I knew that to avoid hypocrisy, Jim needed the same consequence as any other sophomore caught skipping a class. Jim’s defiance didn’t lessen much, but without a word, he commandeered his joystick and headed for the elevator. I had the student assistant follow him down as I took the stairs to catch the assistant principal before Jim got there.

“Treat him like anyone else,” I told the AP.

As we both sat in the office, Jim receiving his detention repentantly, I couldn’t help swelling with pride. At one point, I caught his eye. He couldn’t contain a sheepish smile.

“Was it worth it?” I asked him on the way back to the classroom.

He nearly threw himself from his chair, nodding yes. I laughed and mussed his hair.

“Can I trust you to go back to computer?”

He just smiled, grabbed his joystick, and headed for the elevator.

Daniel Wray

Daniel Wray
is a significant support needs coordinator for Douglas County schools, Colorado. He received his M.A. in special education in 1992 from the University of Colorado, where he currently teaches education courses. Dan has published two books on church drama and coauthored a third for students with disabilities. E-mail Dan at Daniel. [email protected]. Jim’s parents reconciled and are happily living with Jim in Colorado Springs. He continues to exercise his independence and hopes to write an autobiography someday to help others do so as well.

The Class Trip

W
hatever creativity is, it is in part a solution to a problem.

Brian Aldiss

It was a typical warm spring day around three in the afternoon when my daughter’s school bus pulled up, and she came bouncing down the steps with her dress blowing in the wind. As she excitedly told me all about her day, we waited for her brother’s bus to arrive from school. He had to ride a different bus, a short bus. On his bus, no one came bouncing down the steps on their own. They were either assisted by the driver using their hand canes or crutches, or, like my son, they bypassed the steps by riding the wheelchair lift, since a wheelchair was his means of maneuvering around.

His after-school stories usually were not as enthusiastic as hers, but today was different. He rolled to the edge of the lift with papers in hand and a smile on his face, all the while talking a mile a minute and asking me to sign on the dotted line.

As we entered our home, I glanced over those so important papers to find that it was information about a field trip. He eagerly wanted me to sign his permission slip to allow his participation. As I read on, I soon discovered the trip was to a state park about an hour away. The park rests where the ocean meets the bay. The children were going to learn about the habitat of sea life that resided in these areas. Now, you know, where the ocean meets the bay, you are
talking about marshlands and beaches and
sand
!

Maneuvering a wheelchair in the sand is a next-to-impossible task, and trying to explore a marshy area would be just plain futile! However, this mom handled the inquiry from her son, Darryl, like every other that had come before by saying, “If you really want to do this, we will find a way.” The next day, the slip was returned to school, soon followed by a call from the teacher asking me how this would be possible since Darryl could not walk. I assured him I would handle it.

As most of you know, moms with children with disabilities will not take “no” for an answer when it comes to our children being able to participate as fully as possible in an able-bodied world.

I made a phone call to the state park and spoke to a not-so-friendly park ranger about borrowing a beach wheelchair from a neighboring beach. My mission was to have one available to us when we arrived at the park. After thirty minutes of explaining the situation, I felt sure I had convinced him that I was a responsible parent and would take full responsibility for all actions pertaining to his precious, expensive chair and my son, the occupant.

Before we knew it, the day had arrived. It started out on a good note because the school had made arrangements for a “big bus” with a wheelchair lift to make the trip. My son was actually riding the same bus as his friends! He was ecstatic!

The hour ride was a noisy, bouncy, hot experience. The smell of sunscreen and bug spray germinated the air in the bus so badly that neither sun nor flies would dare to enter. I will admit I was a bit nervous as to whether or not the park ranger would be there to meet us or if this whole ride was to be in vain for my son.

Fortunately, he was waiting for us as we pulled in. The beach chair with its big yellow rubber tires was an attraction for all. Everyone wanted to push Darryl along the marshy paths and through the sand. On that day, he was everyone’s best friend. But, as always, the attraction wore off, and left to work were the same four neighborhood boys who had been by Darryl’s side since pre-K, never failing to lend a hand when needed, and never looking at Darryl as a kid with a disability but as a friend.

Three hours into this never-ending educational experience of crab mating and migration, the four boys, my son, and I had fallen behind. Just as the teacher was rounding the bend up ahead with the tour guide and the rest of the class, he looked back and very sternly instructed me to “get those boys away from the water’s edge and catch up!” I explained to the four chair-pushers—really, two would have been able to do the job—that the shoreline drops off suddenly, and they needed to come up on the sand a little more because I did not want them falling in and getting wet. They assured me they were fine. I was filled with joy watching them splash around mischievously and wondered how those big yellow rubber tires would float if given the chance.

I soon realized I needed to start acting like a mom and a chaperone and call them in so we could catch up with the rest of the class, but I was caught up in the fact that my son was having so much fun with his friends, and the laughter was as refreshing as the cool ocean breeze.

Just as I came to my senses to reel them in to where they belonged, you guessed it, the shoreline dropped, and down they all went!

Picture this: four healthy fifth-grade boys, all knowing how to swim, were floundering all over themselves as they were now in the bay up to their necks, all the while reaching to save Darryl, who was now floating off the chair! Thanks to the tide, the chair was moving south while Darryl was floating north! I came out of my shoes as fast as I could and headed to the water to save all five souls that I was responsible for—and, yes, that precious chair, too!

What could have been a stressful and dangerous situation was nothing short of a hilarious, wet mess! All you could hear was laughter and five fifth-grade boys gasping for air from laughing so hard, and thankfully not from water intake. As I was hauling them to shore after catching my son and fastening him back into that expensive state-owned chair that almost ended up in the middle of the Atlantic, we were greeted by the teacher, who came out of the middle of nowhere. As he glared at me for an explanation, the kids hung their heads and wouldn’t even make eye contact with him. I finally smiled and said, “Sorry, but my son was having fun, real fun, with his peers, and that is not an everyday occurrence for us.” He looked at me with a half-smile and walked away.

The ride home was just as noisy as the ride down. Six of us were soaking wet and uncomfortable. Six of us learned nothing about mating crabs or their migration skills. And one of us, the teacher, thanked me for teaching him something that day.

It took that mishap for a very good teacher to see that sometimes the best-laid lesson plans are not prewritten the week before in a lesson plan book.

The lesson of friendship, camaraderie, and laughter was learned that day where the ocean meets the bay.

Debra Behnke

Debra S. Behnke
’s passion for being an advocate for individuals with disabilities runs deep in her soul. Mother of two grown children, she enjoys delivering speeches about the joys of raising a child with a disability, sibling issues, and being left a widow at a very young age. She works full-time for the local government and can be reached at [email protected] is now twenty-six years old and lives independently in his own apartment with outside services to help him with his daily needs.

Good Night, Faith

B
loom where you’re planted.

Author unknown

It was just a slumber party. In the life of most little girls, what’s another slumber party? In the life of our little girl, it was a milestone—for her and for us.

When Faith was born eight years ago with Down syndrome, weighing only three pounds and struggling for life, we wondered what kind of future she would have. Our oldest daughter, Joy, was fourteen at the time, so we were well versed in the activities of a typical little girl. But Faith was, by no means, typical. One thing we were sure about—to the best of our ability, and hers, Faith would be treated as “normally” as possible. Preschool, Brownies, kindergarten, Sunday school, elementary school—in every area, whether at home or away, we wanted her to be treated just like any other little girl.

Of course, not everyone was as convinced as we were. We received advice to segregate her in special-education classes. But we wanted something different for our Faith. And so we entered the bureaucratic world of school readiness, mainstreaming, inclusion barriers, accommodations, modifications, and revised expectations. We’ve found that, frequently, school officials’ expectations for her are lower than ours. It is a worthwhile challenge to keep her included with her typical peers in the general education classroom as much as possible. One of our biggest issues is educating the educators!

But how would Faith handle everyday little girl things, like sleepovers?
We received our answer last weekend. Faith was invited to her first sleepover—a birthday party. Of the ten girls who would attend, six were in her Brownie troop. The others were new to her. Faith’s Brownie “sisters” have always been helpful and supportive of her. Some have been together since attending church preschool. The sleepover mom and her daughter were new to our area, so Faith didn’t know them as well as the others. Saturday afternoon arrived soon enough.

We dropped her off with the other eight-year-old girls at four o’clock. Faith ran into the house and upstairs to greet the other girls. At the top of the stairs, she turned and said, “Bye, Mom.” I stayed downstairs awhile, then went up to tell her I was leaving. She was surprised I was still there and dismissed me with another, “Good-bye, Mom!” The sleepover mom took it all in stride, assuring me that Faith would be no problem. I couldn’t decide if she was being optimistic or naive.

I came home and waited by the telephone. Silence. They say, “No news is good news.” I wasn’t so sure. I stayed up imagining . . . the worst.
Was she scared? Would she fit in?
Would she fall off the top bunk? Was it a mistake to send her? Was the party ruined because of my daughter?
And still I waited. By 9:00 PM, I couldn’t take it any longer. I told myself,
One call.
Just one call . . . in case Faith needs me, or perhaps the sleepover mom needs some help or . . . or . . . or . . .
So I called. Sleepover mom said Faith was doing fine, and would it be okay for her to have another piece of cake? I hung up the phone with a sigh of relief and a smile.