Future Reflections Special Issue, Extracurricular Activities STRETCHING THE LIMITS
by Christina Kuckie-Roberts
From the Editor: When parents learn that their child is blind, they sometimes conclude that he or she will not be able to take part in the activities they most enjoy and value. In this article, Christina Kuckie-Roberts of Illinois describes how she ensured that her son, Christopher, had a chance to share her passions for athletics and music, regardless of his blindness and additional disabilities.
Our eldest son, Christopher, was diagnosed at four months old with Norrie’s disease, a genetic disorder that occurs in boys and results in total blindness. After I received the diagnosis, I spent about ten minutes lamenting Christopher's vision loss. "He'll never see fireworks," I thought. But not once at that time did I assume that Christopher couldn't strive to accomplish certain lifelong goals that I had envisioned for my firstborn.
As the parents of an infant, we tend to dream that our child will excel in the areas that are most important to us. Music has always been an important part of my life, and I love swimming. I have been a member of Sokol Spirit, a division of the American Sokol, for many years. Sokol is a physical fitness organization with classes for those aged three through one hundred and three. We compete against other units in track and field, artistic and rhythmic gymnastics, marching, volleyball, and other activities.
I was confident that Christopher could push past the inconvenience of being blind, but early on I discovered there were still more challenges to face. Christopher was not meeting his developmental milestones. He needed help from a whole squadron of professionals—feeding therapists, speech therapists, occupational therapists, physical therapists, and behaviorialists. Unfortunately, developmental delays are sometimes part of Christopher's diagnosis. Since Christopher was my first child, I didn't yet understand the severity of these problems. My naíve self continued to believe that someday Christopher would enjoy the things I love. I didn't view failure as an option.
When Christopher was three years old, I signed him up at Sokol Chicagoland. This Sokol was closer to home than the gym I attended, and it offered classes on Saturdays. I knew that I would have to stay with him during his classes. I assumed that his instructors had never had to teach gymnastics to a blind child before.
Coach Mike was, and still is, wonderful. He has always treated Christopher the same way he treats the other kids in the class. While Coach Mike instructed, I figured out ways to translate each move into something tactile that Christopher could understand. If we were doing a straddle stretch, I sat behind Christopher in a straddle, pulled his legs out against mine, used my torso to push on his back, and helped him grab his foot with his hand. When I asked him to stand in a lunge, I literally put Christopher's body in that position. When Christopher walked up to the high bar or parallel bars, I tapped the bar with my wedding ring so he could hear where to aim his hands.
When we did sit-ups, I positioned Christopher physically, and then I pulled him forward by his arms. Eventually, I did sit-ups next to him and held one of his arms so that we could do them together.
Then there were pushups. That was a hard one! I put Christopher's body in a pushup position, did a pushup over him, and pushed down with my entire body. Then I tried to pull on his shoulders and hips as a unit to show him the motion.
Christopher's favorite part of class was the trampoline. He was far better on a trampoline than any of the other kids his age. He really understood how to ride the bounce and use his arms. These are difficult concepts for most sighted children, but it all happened naturally for him. For safety, I stood on the corner of the trampoline frame and called out directions to Christopher when he moved off center. However, for the most part, he was able to make the corrections on his own.
Christopher is now ten, and he has continued in Sokol through the years. This past year he competed in track and field and in Boys Gymnastics Skills Day. He also took part in our annual exhibition, which includes a calisthenics routine, marching, and a sports themed special number.
Pretty much everyone at the five local gyms knows who Christopher is. Christopher has been in class with quite a few of the other boys all of these years, and they help guide him if I need to step out for a few minutes. The coaches, youth directors, and competition organizers all are accepting and willing to adapt to Christopher's needs. For example, typically parents and instructors are not permitted to coach a student verbally during competition. However, I am allowed to give Christopher auditory cues to help him maneuver safely on the equipment. At track-and-field events, I run alongside him during the races. For marching I help him make subtle adjustments to fix his direction. During special numbers, I am on the performance floor, leading him from position to position. It is my hope that eventually Christopher will be able to perform without my assistance.
Gymnastics has improved Christopher's grip strength, gross motor skills, coordination, and balance. Thanks to his Sokol experiences, he can now do more sit-ups than the rest of his fourth grade class at school. He can do pushups independently, and during a recent school function he demonstrated his knowledge of marching commands.
When Christopher is at Sokol, he feels completely included. He is just one of the boys. He smiles from ear to ear when he is able to run and play like everyone else. Every year at our annual exhibition, Christopher brings smiles and tears to audience and performers alike!
Another of our shared passions is music. From the time Christopher could walk, he would climb up on the piano bench and pluck out some tunes. He would match the pitch of the lawnmower outside the window, and raise the pitch as the mowing moved closer to the house. His favorite toys have always been musical ones, such as handbells, accordions, and pan flutes. When he was in third grade, all of the children in his music class learned to play the recorder. Christopher loved to practice at home, and we were all so proud of him at the class recorder concert. Now, I know what all of you are thinking—sixty third graders playing the recorder! That must have been painful! Surprisingly, it was pretty good!
At the end of the school year, the children are given the opportunity to try out different instruments and decide what they will play in band or orchestra in the fourth grade. Christopher picked the clarinet. It was a convenient choice, since I am a clarinet player myself. I spoke to Christopher's vision itinerant (VI) and forewarned her that I planned to sign Christopher up for band. Excitedly she agreed. She even learned Braille music over the summer to prepare for her new job requirements!
I also emailed the band director, Mr. S. I thought I should prepare him for what to expect and give him some of my ideas about adapting his teaching techniques and equipment. I wanted to make sure that any additional instruction Christopher required wouldn't inhibit the learning of the other band students. Mr. S. has worked extremely well with Christopher and adapted to his needs. For example, the extreme volume of full band was a little too much for Christopher at first. Christopher and his team moved gradually into full band rehearsals, and the transition only took a few extra days.
Christopher was so proud of himself at his first band concert in December! And we were pretty darn proud of him, too! In January, he actually kicked his aide and his vision itinerant out of his band lesson. He told them, "I can do this myself!" The VI called me and said, "I've never been so happy to be kicked out of someplace in my life!"
Most of all, our family's favorite thing to do is vacation! And our favorite place to vacation is the Wisconsin Dells, the waterpark capital of the world! Waterparks are among the places where Christopher and his three siblings are equal. He can feel the same freedom and enjoy the same fun as Julie, Cadence, and Janelle. We never would have expected this eight years ago!
From the time Christopher was born, he hated baths. Showers were okay, but in a bath he would scream. This behavior continued when he started school. He hated the water table and hated to be splashed.
One day two of my other children were in the bathtub. I was supervising the two kids, and we were having fun and making a ton of noise. Christopher came in to see what the ruckus was about. Apparently he felt he was missing out on the fun. He asked to join the kids in the tub. I couldn't believe my eyes when he actually stepped in and started splashing with the other kids! That summer, when all of us went to the pool, Christopher decided to walk right in—no muss, no fuss.
Fast forward to today. Christopher loves to go down water slides, even the big, scary ones! It is humbling to watch Christopher's younger sister, Julie, carry the big double tube all the way up those stairs, while verbally guiding Christopher's path; or to watch his younger brother, Cadence, lead Christopher through the towering play areas. What is Christopher's favorite part? The wave pool!
Sometimes I dream about how much easier life would be if Christopher were "just blind." Sometimes I don't know where I'm going to find the physical energy to get us through another gymnastics class. But I do. Every time! And when Christopher jumps and laughs with his friends, and I see the glowing pride on his face, I know for sure that all the hard work is worthwhile.