My husband and I just smiled, thinking we knew how he felt since both of us had had to share a room with a younger sibling who ruined our lives as well. My own childhood memories didn’t stop me from forcing our two boys to spend every waking moment side by side. My voice could often be heard encouraging their twosome. “Include Bennett. Let Bennett play. Let him take a bike ride with you. Let him go outside with you. Share your pop. Give him a cookie. Let him hold your Pokémon cards. Let him have all the red Legos. Give him the frog.”
Clayton obliged most of the time, albeit begrudgingly, and I knew there was little he could do on his own as long as Bennett was around.
I thought I knew how he felt since I had a little sister who was my shadow for eighteen years. One night, I found out how little I knew about how he felt.
I had just put the boys down for bed and was settling into my book and a bowl of popcorn when I heard what sounded like crying from the upstairs bedroom.
I sighed and hesitantly climbed the stairs. “What are you crying about?” I demanded angrily. Clayton had used the crying stall tactic many times at bedtime.
“I . . . I . . . I . . . wahhhh!”
“What? Slow down, I can’t hear what you’re saying,” I said, softening my voice and sitting down on his bed.
“I just wish Bennett had a different brain . . . wahhh!”
That’s when my heart sank in my chest. I had never realized until that moment what a burden my oldest son was carrying as he tried to be a big brother to Bennett.
“Why do you wish Bennett had a different brain?” I asked, sincerely wanting to know how he felt.
“I just get so mad at him, and then I feel so bad because I know he can’t help it. It’s just not fair that I can’t have a normal brother who understands things like I do.”
My throat tightened, and tears filled my eyes. I knew exactly what Clayton was talking about. I knew how Bennett’s disability had impacted me, but I had never really thought about how it had impacted his siblings.
I rubbed Clayton’s back softly as he continued to sob. “Do you know why Bennett was given to our family?”
“Yes, I know. So that I could protect him, and that he could teach us and others to love people who are different than us. I know. I know. But I still wish he had a different brain and that he didn’t have autism.”
“Do you think he knows that we love him even when we get mad at him?”
“Yes,” Clayton said, sitting up and looking over at Bennett, who was playing on his bed unaware that a conversation about him was happening just three feet away. Bennett continued to crash his plastic dinosaurs together, making gnashing and gnarling sounds as they wrestled on top of the bedspread.
“Benny, do you want to sleep in my bed tonight?” Clayton asked with tears still staining his cheeks.
Bennett grabbed his pillow, his blanket, and twenty toy dinosaurs, and crawled onto the foot of Clayton’s bed, curling himself around his big brother’s feet.
“I love you, Benny,” Clayton said.
“I wove you, Benny,” Bennett replied.
After tucking the boys in for the “this is the last time, and I mean it” time, I pondered Clayton’s words and realized he needed some time away from Bennett. He didn’t know how to say it and probably didn’t even realize he needed time off from being “Big Brother.”
I found babysitters for Bennett so Clayton could spend some uninterrupted time with Mom and Dad. I also arranged more play dates for Clayton away from home. Clayton still gets angry and frustrated with his little brother, but he knows when he needs time alone that he can ask. When Clayton comes to me and says, “I need to be alone,” I find a special spot for him to be alone with his thoughts and his Legos. After a little while, he returns, looking for Bennett, who greets him with a toothless smile.
The boys still share their clothes, their bedroom, and their toys. But as this mother found out, they don’t always need to share their time. They needed time off from being full-time brothers.
And at the end of the day, when the lights are out, I still hear two brothers at the end of the hall, trying hard to whisper as they fly their toys off the end of the bed and battle plastic dinosaurs until they fall asleep, sharing a bed and possibly each other’s underwear.
Kimberly Jensen
Kimberly Jensen is the mother of three children, and writes children’s books focusing on loving children. Today, Clayton and Bennett have separate bedrooms after a move to a new house and a heartwarming essay by Clayton entitled, “A Room of My Own.” That essay solidified Kimberly’s decision to separate her growing boys after reading the line where Clayton expressed the need for “a room to be me.” Please e-mail Kimberly at
[email protected] Out of the Mouths of Babes
My husband and I are the good-humored parents of four children with autism. Not many people come to visit, but when they do, they are sometimes surprised at what they may experience. One day, a repairman came to our house. Upon seeing our 110-pound dog, he fearfully asked if the dog bites.
My eleven-year-old son with Asperger syndrome said to him, “No, our dog is very well behaved and does not bite. However, you may want to make sure that you do not get too close to my three-year-old brother. He has sensory problems, and biting is his way of checking you out. So if he gets too close, run.” At that moment, our three-year-old was in the process of biting the dog, who just looked at me as if to say, “Please, help me. The toddler is biting me again.”
The repairman, looking a bit surprised, commented that our dog was very well behaved indeed.
Deana Newberry
Deana Newberry received her master’s degree in Spanish education from the University of Buffalo in 1994. She is a teacher in western New York. She is currently completing a Spanish lesson book for her special-education students. You can email her at
[email protected] off the mark.com
Reprinted by permission of Off the Mark and Mark Parisi. ©2006 Mark Parisi.
7
EARLY
LEARNING
Isn’t it splendid to think of all the things there are to find out about? It just makes me feel glad to be alive—it’s such an interesting world.
Lucy Maud Montgomery, Anne of Green Gables
The Slide
There are two ways of exerting one’s strength:
one is pushing down, the other is pulling up.
Booker T. Washington
I have worked with people with disabilities since I was in college. Honestly, though, I have always said, “This really isn’t where I belong.” I did not study special education in college. I was a psychology major. When I pursued my master’s degree, I chose early-childhood education hoping to open a parenting center in my community to teach expectant parents the wonders of newborns and very young children.
Yet, time after time, I kept finding jobs and opportunities in the field of developmental delays and disabilities. My husband and I were blessed with two little girls when I was working as the director of an early-intervention program for children from birth to age three with developmental delays and disabilities. My young daughters were raised around a kitchen table where stories were shared about the triumphs, challenges, joys, and struggles of parenting children with disabilities. They heard many of my “soapboxes” about stereotyping people with disabilities. They cried or laughed at wonderful stories from those infants and toddlers and their families who opened their lives to me.
Each year, our program had an end-of-the-year graduation for those children who would be moving on to the next stage of their lives. For some, that would be community programs; for others, they would begin the special-education process. It was a big to-do at a local park with many families in attendance. All of the staff’s families attended, too. There were balloons, fried chicken, graduation certificates, lots of pictures, and certainly many hugs and a few tears. The graduation picnic was just getting started when my youngest daughter, Gracie, age four, asked if she could
go down the slide. This was one of those “cool slides” with about ten steps and a steep incline. The slide was all metal and slippery.
Since my husband had a work commitment that night and was unable to join us at the picnic, I greeted families as they joined us and kept one eye on the slide as I watched my two little ones head off. The picnic paraded on with the charm of a small town. Parents laughed and reminisced. Children ate ice cream and chased lightning bugs. Gracie could hardly take time to come down from that slide to eat.
Pretty soon, a little girl who had been in my program several years earlier made her way to the slide. She, too, wanted a turn on the “cool slide.” Lena, who was seven, had Down syndrome. Due to complications from heart surgery, she had incomplete paralysis from the chest down. She wore a body brace and “bear-walked” on her hands and feet. Lena had been the very first baby I had seen as an early interventionist. Lena’s mother was now a member of the staff at the early-intervention program. Quickly, I went to find Lena’s mother to see how she wanted to “handle” this. It took me a few minutes to locate Lena’s mother in the crowd. When I explained the situation, both of us went running back toward the slide.
As we made our approach, we both stopped, frozen in our tracks. Lena was pulling herself up the first few steps of the slide ladder. Gracie was behind her, lifting one of Lena’s feet onto a step. She then moved to the other side, lifted the other foot, and gently pushed her bottom. Lena then used her arms, which were very strong, to pull herself to the next rung. Gracie then began the process again, lifting one foot and then the other, with a little bottom nudge. When Lena made it to the top, she smiled triumphantly, laid down on her belly, didn’t even blink, and whoosh! Down she came! In a flash, Gracie was on her belly right behind her, squealing and laughing all the way down! At the bottom, the girls giggled and carried on, and slowly made their way back to the ladder. It was time to do it all again! Lena and Gracie played on the slide until the last flicker of evening light gave way to the early glow of the August moon.
As we drove home that evening, I thought I would try to talk to Gracie about how proud I was of her. I also thought that perhaps all those talks around the table had made some impact, and maybe, just maybe, I had played a role in this remarkable child’s ability to relate to a child with a disability. And so I said, “I guess you see that Lena is really much more like you than different from you.”
Gracie was very quiet in her car seat. Finally, she said, “Oh, you mean, how her eyes are squinky.” For the life of me, I could not understand how we could be talking about Lena’s eyes when Gracie had just spent the last two hours lifting Lena’s legs and helping Lena get up a slide because she could not move the same way as Gracie.
Ever the early interventionist, however, and never one to pass up a “teachable moment,” I decided that Gracie must be talking about Lena’s facial features related to having Down syndrome. I began a monologue about facial features that people with Down syndrome may have. When I finished and asked Gracie if she understood, she simply sighed and said, “Lena’s eyes are squinky because she smiles so big when she laughs!”
At that moment, humbled by the wisdom of this little child, I knew that God was teaching me many lessons through Gracie and Lena. When we truly look at the person, we see beyond all disabilities. Lena’s smile captured Gracie’s heart, and a friendship blossomed. And for that moment, on that August evening, all that mattered was how many times you could ride on that cool slide!
Corinne Hill
Corinne “Cori” Foley Hill received her B.A. from the University of Virginia and her M.Ed. from James Madison University. She provides personnel training in early intervention in Virginia where she lives with her husband and two daughters. Cori dreams of living in the Caribbean and writing children’s books. Gracyn “Gracie” Hill is now in middle school in Augusta County, Virginia. She plays travel soccer and AAU basketball. Gracyn loves to dance, especially lyrical, hip-hop, and Irish step. When she grows up, Gracyn would like to find a job working with babies or young children. Lena Campbell is an AB honor roll student in middle school in Rockingham County, Virginia. She recently became the first cheerleader/pom-pom girl with Down syndrome in Rockingham County. Lena won a blue ribbon for her artwork entitled “Pom-Pom Girl.”
Three Houses Down on the Left
Make education a continuing, never-ending process.
Nido Qubein
In 1964, Millside Heights was a new town with new houses built to lure the baby boomers away from the city. This acreage—once a dairy farm with roaming cows—was now filled with colonial, split-level houses, but no stores, post office, schools, or churches. How great life was when you had a master bedroom and a master bath, hardwood floors, a fireplace, and four choices of wallpaper! My parents bought the split-level design, perfectly placed on a wooded lot facing a freshly paved black-top road named after a top-notch Ivy League university. We were a family of three: my mom, my dad, and me.
In the surrounding area, there were three Catholic schools, which most of the neighborhood kids attended. I thought it was fascinating: students got to wear a uniform, buy their schoolbooks, carry a lunch box, and ride on a big yellow school bus. I went to a small Quaker school, so small that no buses transported the students. I wore what- ever clothes I wanted, got a hot-cooked meal at lunchtime, and was driven back and forth by my mom. While my mother made every attempt to reinforce how privileged I was, the other children made it clear that I was “different,” decidedly not one of them.
The only kids more different than I lived three houses down on our left. Nobody was allowed to play with these kids. I was too young to understand what really went on in their home, but there was gossip. Sometimes the police would come in the middle of the night and handcuff the dad while the mom screamed obscenities. Sometimes I would see the parents in the daylight as they staggered down the driveway, unable to keep their balance. Their four children, all skinny and pale, wore hand-me-down clothes. And, it was rumored, the kids had lice. They did not have new bikes, and the few toys they did own were broken and left out on their front lawn. As I remember it, the mom died tragically, and the dad was left to take care of the four children. Prior to the mom’s death, none of the children were registered in school, but a lot of things changed after she died. Three of the children were sent away—we never knew where. One boy remained at home, sometimes supervised, sometimes not.
One day, we noticed a green and white VW bus pulling up in front of the house three doors down on the left. The remaining boy got into the van every morning and was returned in the afternoon. Rumor had it that he went to a school for “bad boys” and that he was “retarded.” Around the neighborhood, the green and white VW bus became known as the “retarded kids’ bus.” It was around that time that my school connected with the local school district, agreeing to provide transportation. Believing that on the first day of school I would get to ride in a big yellow school bus like the other kids, I was thrilled. I would no longer be different, at least not when it came to that.
But as I stood at the front door waiting for my ride on the opening day of school, to my horror the small green and white VW bus pulled into our driveway! The neighborhood children on their way to catch their buses stopped to stare as I climbed aboard.
“See, I told you she was retarded,” one of the boys yelled from the back. My face burned, and tears streamed down my face, as I waved good-bye to my mom. The bus driver told me that “everything would be all right.” But for the next five years, I heard the same horrible, hurtful words—even when they were not said out loud.
I wonder now if this is how the boy who lived three houses down on the left felt every morning when he went to school.
Words like “inclusion” and “accessibility” were not part of society’s daily vocabulary in the sixties, and the thought of accepting individuals who were different into our lives was unthinkable.
Forty years later, I am a social worker for adults who have development
al disabilities. I am also the parent of a child who has a developmental disability. I work daily to break down physical and attitudinal barriers. Every day I am blessed ten times over by my daughter’s smile and good-morning hugs. I treasure her accomplishments and am so proud of the effort she makes when attempting to master a task. Through four years of early intervention and thirteen years of schooling, my daughter has learned to stand, walk, and assist with dressing and feeding herself. She makes choices, has learned her colors and shapes, and has worked on learning her alphabet.
After reading Mitch Albom’s The Five People You Meet in Heaven, I was left wondering who in my life has made such a profound difference in who I have become. I believe that the skinny little boy who lived three houses down on the left will be the first person I meet. I hope I get the chance to tell him about my daughter and to thank him for teaching me what I needed to know. Until then, I hope he is in a place where he is cherished and accepted. I hope he is somewhere he is never ignored or isolated. Even more than that, I hope he will forgive me.
Deborah McIntire
Deborah McIntire resides in Jenkintown, Pennsylvania. She is the director of Special Gifts, which is dedicated to adults who have developmental disabilities and helps others to be aware of the gifts that these adults have to share. Write to Deborah at Special Gifts, 412 West Avenue, Jenkintown, PA 19046, or
[email protected] Illumination
When people are made to feel secure and important and appreciated, it will no longer be necessary for them to whittle down others in order to seem bigger by comparison.