Chicken Soup for the Soul: Children with Special Needs (8 page)

As Sue sat there, my friend and I began to hurt her. We pushed her and scratched at her arm. We said mean things to her.
What had prompted this most hurtful and cruel behavior?
What had she done?
Nothing.

Her only “crime” was that she looked different. Her mouth was different than ours, and when she spoke, it sounded different. She sat silently and endured our cruelty. She could have called to the bus driver or told us to stop, but she chose not to.

After arriving at school, I was called to the principal’s office. I can still remember the look on Mrs. Barto’s face and the sadness in her eyes as she asked me why I had done this. I hung my head and said I didn’t know, and I honestly didn’t. That was the sad part. That was the last day Sue ever came to our school.

Years later, in high school, I met Sue again. She was nice to me. Although she didn’t recognize me, I knew it was Sue. I could still see the mild trace of a scar on her upper lip. I wanted to tell her how sorry I was, that I was the mean little kid who had taunted her that day, but instead I hid in the anonymity of being a teenager. She never knew it was me, and I never had the courage to tell her.

In a hospital room some twenty-six years after kindergarten, my fifth baby was born. The words they used to describe him were hard for me to hear, “Down syndrome.”

As I looked at my newborn son, my heart ached. All I could think about was Sue.
Had her mother held her and loved her, just as I did with my David?
Of course, she had. Though David looked different to the doctors, he looked beautiful to me. All of a sudden, I realized that, someday, others might be as cruel to David as I had been to Sue—all because he was different.

It felt like my life was shattering. I felt like God had made a mistake in sending David to me. I was sure some other mother could love him more and be a better mom. I knew I didn’t have what it took to be the mother of a child with a disability. This was more than I could bear.

Then a phone call came to the hospital. It was my friend Kris. With her usual enthusiasm, she greeted me with, “I heard you have a beautiful baby boy!” My mind raced. Surely, no one had told her about my baby because they didn’t want to hurt her. They knew that her daughter Kari was profoundly mentally and physically disabled and was not expected to live very long.

I never quite understood Kris. She treated Kari as you would any baby. I never once saw that look of disappointment that I thought the mother of a child with a severe disability should have. Secretly, I wondered if she really understood how bad off Kari was.

I didn’t know the words to say, but I knew I had to tell her the truth. Through my tears, I replied, “I do, Kris, but he’s handicapped.”

Immediately, and with excitement in her voice, she said, “I know. Isn’t that wonderful?”

I was so taken aback. When she said that, it was almost as if she were sharing a delightful secret that only she and I knew.
How could she, of all people, be happy for me?
Something in her voice gave me hope.

Yet, even with that hope, I struggled. I have never grieved so much for anything or anyone as I did for my David.

Are there still unkind children left in this world?
Perhaps, but my experience has been that most kids are good and kind.

Sue taught me forgiveness. It is because of her that I can forgive myself for how I once treated her, as well as for my uninformed thoughts regarding my son.

Kris taught me acceptance. She taught me to be able to see what others could not—the worth of a child.

I remembered how Kris had told me that when Kari was born, the doctors had told her to take her baby home and just love her because she would not live through the weekend. Kris told me that when she got home, she made a list of the things she wanted to do before her baby died. She wanted to kiss her and sing to her. She wanted to rub baby lotion on her and put a pink bow in her hair. She wanted to cut a locket of her hair and tell her how much she loved her. Kris told me she considered each day after completing the items on that list a Bonus Day. God gave Kris 3,779 bonus days.

But it has been my son, David, who has become my finest teacher. He has taught me that the only sadness I should feel at the birth of a child with a disability is for those who have not learned how to love him yet.

Gina Johnson

Gina Johnson
is the proud mother of seven beautiful children, including a son, David, who has Down syndrome. She is the founder of the nonprofit Sharing Down Syndrome Arizona, (
www.sharingds.org
), and an outspoken disability advocate who loves her faith, her family, and all children, but especially those who have Down syndrome. Reach her at [email protected].

Out of the Mouths of Babes

One of my six-year-old daughter’s favorite kids in school is a nine-year-old boy named Sammy. According to Nikki, Sammy is in a wheelchair and has a feeding tube.

One day, during one of our after-school chats, I asked, “Nikki, can Sammy talk?”

“Oh, yes,” she assured me. “He can talk.”

“Are you sure?” I asked her. “I thought the kids in his class couldn’t talk.”

“Yes, he can,” insisted Nikki, her voice growing louder. “Sammy talked to me today.”

“What did he say?” I asked her.

Nikki responded, “When I said ‘hi’ to him, he smiled at me.”

Cheryl Kremer

Cheryl Kremer
lives with her husband, Jack, and children, Nikki (now fifteen) and Cobi (twelve), in Lancaster, Pennsylvania. She has been published in several Chicken Soup books and is thrilled every time she sees her work in print. She spends her time working in preschool and watching her kids play soccer, basketball, and field hockey. She can be reached at [email protected].

The Vacation

S
ometimes adversity impels a person to greater heights, and sometimes it provides the opportunity for that person to be a blessing in the lives of others.

Norma H. Hill

One summer, my entire family planned a family reunion. When I was talking to my best friend about this, she offered to watch Brandon for the week, but I declined. We were going on a family vacation, and Brandon is part of our family. “It’s all for one and one for all,” I told her. It would be much later that I would learn the hard way the true meaning of those words I so lightly spoke.

My husband had reservations. We had never even taken a vacation since Brandon was diagnosed with autism, except for those “safe” trips to Grandma’s house for respite and reprieve. But I’m Italian, and I’m stubborn, not to mention sentimental.

I grew up on Long Island Sound in New Jersey, and have many, many wonderful memories of the beach, “Ole Barney” the lighthouse, fishing, and being around a bunch of loud, hearty Italians. I wanted to bring Brandon with the hope that maybe, just maybe, something from my world would touch his. Maybe something about the ocean atmosphere would reach him. There are so many things that I want to share with him, and I wanted this vacation to be the picture that painted, for him, a thousand words. I suppose some part of me was still picturing myself as a typical mom taking her typical son on a typical family vacation, like other typical families do. But I’m not a typical mom, and I don’t have a typical son, and so began our vacation.

We boarded a plane, nonstop to New Jersey. We were ushered onto the plane quickly and with no delays. I had specifically requested the last rows in the back of the plane, where the engines are the loudest, in case of shrieks, shouts, or humming from my son. The flight attendant announced we would be taking off, and my husband and I looked at each other in bewilderment as the plane was half-empty.
Could it be?
we thought.
Would we have the whole back half of the plane to ourselves?
There was no one in front of us for at least five rows. Brandon was free to wiggle, stand up, move around, and have a grand old time. He was happy. I looked over at my husband with that “I told you so” expression, and started to relax, thinking that this was too good to be true. Indeed, it was.

The moment we arrived at our destination and walked into the tiny house full of smoke and boisterous Italians, Brandon changed. Within thirty minutes, he fell off an unfamiliar porch trying to escape the mayhem, busted his knee open, and was smacked in the face with the back of a porch swing because the relatives didn’t know that he didn’t know to not go behind a swinging porch swing. Within one hour, it took my holding his top half and my husband holding his bottom half to calm him down from an overstimulated sensory dysfunction rage. Within two hours, I was begging my husband to send Brandon and me back home. My husband had the good grace not to give me that “I told you so” expression.

After our poor child finally fell asleep from sheer exhaustion, leaving us both disgruntled and exhausted from the ordeal, my husband looked at me and said, “We can do this.” I have never felt so much love for him as I did at that moment. There was as much pain and heartache in his eyes as I felt in my heart. They say that having a child with a disability either makes or breaks a marriage. For us, that moment was our test, determining how we would handle things for years to come. I’ll never forget what my husband said next: “I may not have been put on this Earth to be a great athlete, or a Wall Street wizard, or to be famous. Instead, I think God put me on this Earth to be a good daddy to Brandon, and a good husband to you.”

That was the defining moment of our vacation, our marriage, and of our lives with Brandon. The rest of the week was no different. We couldn’t take him on the boat because he kept trying to climb out. Seeing the lighthouse was no thrill; in fact, I’m not sure he ever quit flapping his shirt long enough to notice it. He dealt with things better in the quiet of his room at the shore house, playing with his familiar toys. And so it was there that I learned acceptance. Not defeat, but acceptance.

I learned to accept that it’s okay that he didn’t enjoy everything. To accept that it would be okay to bring someone along next time to stay with him in the shore house, or better yet for him to stay at home in his familiar surroundings, doing the things he likes to do. To accept that I don’t have to include him, just for the sake of including him. I felt such peace when I came to terms with the fact that I can’t always do typical things with a child who is not typical.

Finally, the week was over, and it was time to get on the airplane to go home. We planned carefully and paid extra money to book another nonstop flight. Unfortunately, Murphy’s Law came into effect: if anything can go wrong, it will.

Our predicted two-and-a-half-hour flight was packed. I knew Brandon had had a hard week, so I gave him some Benadryl to allow him to sleep on the plane ride home, timing it perfectly so that he would be asleep about the time we were in the air. Brandon did sleep, but it’s too bad it was while we were stuck on the runway with one delay after another. When he woke up, I had a wide-awake, energetic, can’t-sit-still, overstimulated child. I faintly remember begging the flight attendant to let us off the plane after sitting on the runway with the engines off for two and a half hours. I faintly remember standing in the aisle so Brandon could have more room once we finally took off. I faintly remember lying on the galley floor, trying to hold down a child with autism in the middle of a meltdown, while crying almost hysterically myself because it was now too late to even jump off the plane.

When we finally arrived home—with no one in the house but us—my husband did a little “Yeah, we’re home” dance and clapped his hands. Brandon looked straight at him, smiling and laughing for the first time in a week. He clapped his hands for the first time ever. That week, I learned that with my family, it is indeed, “All for one, and one for all.” Autism did not, and will not, ever defeat us. It may slow us down and change the way we do things, certainly how we travel, but defeat us? Never.

Michelle M. Guppy

Michelle M. Guppy
is a wife, mother, and autism advocate. While Brandon has adapted to traveling by car for family vacations to Grandma’s, their family has yet to brave tackling another vacation where they have to travel by airplane! They have decided that the best vacation with their son is simply jumping on the trampoline and swimming in the pool in the comfort and safety of their own backyard. Michelle often uses humor in writing inspirational stories for parents who have children with autism. She can be reached at [email protected] or through her website at
www.TexasAutismAdvocacy.org
. Michelle is creator of the Autism Awareness Calendar for Texas.