Future Reflections Fall 2009
by Beth Sturman
From the Editor: Beth Sturman is an active member of the National Federation of the Blind of Illinois. In this article she recounts her family's long journey to meet the needs of her son, Marcus Boyer, who is legally blind with some residual vision. Her quest for the tools to help her son learn effectively mirrors the experiences of countless families of low-vision students.
"Are we there yet?"
On a long road trip you hear this question from your children again and again. In our family's case, we find ourselves asking this question on our journey with our son, Marcus Boyer. Marcus is a thirteen-year-old blind child. His challenges have led us uphill and downhill, over plateaus, through tunnels, up mountains, and even across the barren desert. Like any trip, ours is exciting and stressful. We run into obstacles and roadblocks, but we also see beautiful scenery. As we gain experience traveling we take time to smell, hear, and taste our successes.
I gave birth to triplets on September 26, 1996. Marcus weighed 2 pounds 2-1/2 ounces, and had a Level 3 brain bleed. Time after time he took two steps forward and one step back, always keeping us on our toes. We knew that he was going to be active and full of energy.
After Marcus had been in neonatal intensive care for three weeks, the doctor told us that his retinas were detaching and he needed surgery to save his sight. Then, barely a week after his first operation, the doctor put a shunt in his head to help drain the fluid around his brain. Marcus fought his way through all these dangers. After ten weeks in the hospital, we finally got to take him to his first destination, his home!
Home on a heart monitor and many medications, Marcus soon revealed his unique personality, drawing all kinds of people to him. Yet his progress was uneven. Still unaware that Marcus was legally blind, we noticed delays in his development. It is wonderful having triplets--we had two other children to show us the age-appropriate skills Marcus needed. As we identified the problems, we faced the stress of mapping out a plan of action. How were we going to get Marcus to his next stage in life?
In those days we were a timid family of meek demeanor. We were very good at taking directions from others, but we never questioned where we were going. To visit various pediatric specialists we traveled with Marcus to Chicago, St. Louis, and Indianapolis. Whenever we could manage it, we turned these medical excursions into family outings. Marcus experienced train rides, horse and buggy rides, and boat rides. He visited zoos and museums and attended major-league sporting events. Life was good. We thought we were at the place we needed to be with Marcus.
Marcus was on his way to our next destination, public school. Surely, we thought, school was the perfect place where Marcus could grow and develop. "Are we there yet?" we asked.
School proved to be a struggle for Marcus. His first grade teacher referred him for a vision assessment. We also took him to an optometrist. Marcus was found to be legally blind. Our school district assured us that he would receive vision services so he could learn to read. The district hired an itinerant teacher of the visually impaired (TVI), and services started at the beginning of second grade. Unfortunately, we found out in March of that school year that the TVI seldom appeared to work with Marcus and his classroom teacher. The regular education teacher and special education teacher were floundering with no knowledge about blindness. We spent months on this road, traveling aimlessly. Eventually the district fired the TVI and hired another one for Marcus's third-grade year.
The new TVI was full of useful information. She introduced us to dazzling technology that she promised would help us on our journey. By using a CCTV, Globe Magnifier, and monocular, Marcus would be able to read print. We met a small village of people within the school district, the cluster of professionals involved in the education of exceptional children. We were excited to scale this mountain and conquer whatever lay on the other side. With all these new services and this new technology, we thought to ourselves, "We are there!"
As the year went on, however, Marcus's reading failed to improve. In fact, he was still struggling at the pre-primer level. When we questioned our TVI, the occupational therapist, and the other professionals, the climate seemed to change. We found ourselves in the desert, lonely and isolated. Our family walked toward the mirage of wonderful services to help Marcus cope with his limited vision. The village of helpers became nomadic. Most of the professionals wandered away, leaving us with only the baggage we had in hand. "Are we there yet?" we asked hesitantly. As a family, we decided this was not the place for us.
When Marcus was in fourth grade, we suggested Braille as an option. His teachers told us that Braille was old school, and insisted that technology was the way to go in today's world. We did not understand that technology without a method of reading is illiteracy. We knew only that Marcus lagged farther and farther behind his classmates with each passing year.
By now we had shed our meekness. We began to push against assumptions. We crossed a foggy, hazy landscape and reached a city of busy traffic and loud noise. We met education advocates and talked with education lawyers. The fast pace and quick action were exciting, and sometimes exhausting. We grew overwhelmed as the experts cited studies and quoted from articles. Our heads spun until we all got seasick.
We finally obtained orientation and mobility training (O&M) for Marcus, after the school district turned him down twice for these services. Marcus was only allowed to use the cane at school, and only when the instructor was present. In theory he had two short sessions with the cane each month. Then we discovered that the O&M teacher was skipping lessons. We called meeting after meeting. Marcus moved on to fifth grade. He entered a new school, made new friends, and met a new set of teachers.
The strain took its toll on Marcus. He became lethargic and withdrawn. Cut off from the opportunity to learn beside his classmates, he escaped by tuning people out. He lacked the self-confidence to move forward.
Marcus was placed part-time in a special education classroom where more than half of the children had behavior problems. He spent half of each school day in this class. Soon he was mimicking the inappropriate behavior of his classmates. He enjoyed listening to his new friends talk about gangs and fighting. I started visiting his classroom to observe, and enlisted the help of other evaluators as well. We found that some of Marcus's vision equipment was broken. Sometimes the other students maneuvered the equipment while Marcus was reading.
Marcus was getting lost in the new school building. He had a difficult time traveling up the stairs and across the courtyard. Teachers told us that he was immature because he wanted to grab their hands when they traveled in unfamiliar places. The school denied him the opportunity to go on field trips with his regular education class. Our dream destination eluded us. The lawyers, doctors, and advocates were very good at finding "quick fix" solutions to Marcus's problems, but nothing they did made a real difference. The mounting frustration and the ongoing expenses were crushing us. We had to leave the city and travel on.
When he was eleven Marcus started telling us about places he wanted to go. He wanted to read, to take part in sports, to meet new people, and eventually to travel by himself. How could we help him reach these goals?
After making over seventy phone calls to find guidance and information, we finally discovered the National Federation of the Blind of Illinois (NFBI). We met Patti Gregory-Chang and Debbie Stein, NFBI president and vice president. Suddenly our journey took on new meaning and power. We surrounded ourselves with blind people who knew how to travel and navigate through their own adventures. People in the NFB showed us the power and the shortcomings of technology. Blind themselves, they were experts on blindness, and directed us to the tools that would give Marcus independence. They taught us the value of Braille and the freedom that was possible through the use of the long white cane.
We have been traveling with the NFB for the past two years. Our family has attended national conventions in Dallas and Detroit. Marcus attended Buddy Camp in Minneapolis. We have visited the National Center in Baltimore, and walked the halls of Capitol Hill in Washington, DC. We belong to a community that stretches across the country and beyond. Marcus now has friends from all over the United States and even from Jamaica. He has traveled by plane, train, and bus. He has the support and guidance he needs to draw his own map.
Last summer the NFB helped us obtain intensive Braille instruction for Marcus. Today, in the seventh grade, he is finally reading Braille. He is still a beginner, but he enjoys reading without someone helping him at every step. His friends know that he is reading; right now the grade level doesn't matter.
We have found through the NFB that fighting with our school district only put a halt to our adventures. On our own we found help for Marcus, and now he is teaching the school district. He has a great orientation and mobility specialist, and technology services supplement his increasing literacy skills. He plays golf, shoots baskets, and bowls on a team. Currently Marcus is on his middle school's cross-country team, even though the coach is not very supportive. Recently Marcus ran in a meet and was the first runner from his school to cross the finish line. The smile on his face was priceless! It is part of his life journey to prove to people that he might be blind but he can still function as well as anyone else.
Someone once told me, "Maximize the opportunity and minimize the disability." Knowing your child and being involved in your child's life will help you understand the importance of high expectations. By raising the expectations you will push your child to his or her highest potential.
We might not be there yet, but what an adventure we have had so far! We are becoming better travelers and more experienced navigators. We could never have reached this point without the help of the National Federation of the Blind and the National Organization of Parents of Blind Children (NOPBC).
We are lucky to be able to travel with Marcus on all his adventures. Don't miss the opportunity. Take the journey with your child and see the sights!