American Action Fund for Blind Children and Adults
Future Reflections Special Issue: The Individualized Education Plan (IEP) IDEAS AND PERSPECTIVES
by Kevin and Rita O'Connor
From the Editor: Kevin O'Connor is a professional speaker who teaches at Loyola University in Chicago. Rita O'Connor is an attorney and real estate broker. Their son Corbb's work focuses on accessibility at US Bank.
For the final time we sat around the table at an IEP meeting for our son, Corbb. He was completing his last year of high school, and soon he would be off to the George Washington University in Washington, DC. After the psychologist gave his report, he asked Corbb's permission to tell all of us something he had shared in a private discussion.
When Corbb agreed, the psychologist set the context for us. He had finished his evaluation, testing, and interviewing, but he had one last question. "If you could change one thing about your life, Corbb, what would it be?" he asked.
The psychologist fully expected that Corbb would respond with some comment about his blindness. However, Corbb's answer took him by surprise. "I can't think of anything really," he said. "Maybe better vision ... but I'm not sure it's really necessary."
A hush fell over the room as we pondered Corbb's answer. The response we all expected was not Corbb's experience.
As parents, these are our memories of our journey with our son through age eighteen: doctors, birth-to-three programs, preschool through junior high, high school, canes, guide dog, teachers, instructors, administrators, IEPs, college applications, summer jobs...plenty was going on for us. One of our biggest concerns was how our son would interpret the curves life throws at all of us. Would he perceive them as bumps on the road to maturity or as the price to pay for having a visual impairment?
We thought that the early days would be the most difficult. They were—not for Corbb, but for us, with our uncertainty, our fears and anxieties, and our search for answers and support.
Disability in any form, at any age, knocks us off balance. Visit any school for the blind and you will see every disability imaginable, often in combination. You will also see the human spirit. Undoubtedly some students wish for perfect health and visual or auditory acuity, as their parents and grandparents wish those things for them. But something very interesting happens somewhere along the way. A realization dawns that this is life, my life, my child's life. Somewhere along the journey we recognize that it is our job to help that life happen in whatever form it takes, fulfilling whatever potential lies within it.
In the early days, we weren't ready for this lesson. Maybe, just maybe we had to fight the grief and the pain as hard as we could. C. S. Lewis said, "The only way out is through." We fight not with the pain. We fight through it.
When Corbb was diagnosed, the first call Kevin made was to an optometrist and dear friend, Dr. Stanley Dushman. Stanley had been our eye doctor, and his wife was Kevin's graduate school and private practice partner. Both of them were dear, dear people, the kind of people you call when you are in trouble.
Stanley listened to the little we knew about Corbb's eye condition at that time. Then softly, lovingly, and confidently, he said, "Let him see what he sees. Don't compare your vision to his." Those were wise words that Kevin ignored for the next ten years!
Meanwhile, Rita scoured the research and visited the doctors. Something here and something there, bits came to us, but it was never enough, never satisfying. It was never the cure we wanted, the cure that we knew deep down we would never find.
We were fortunate to get great vision services. Corbb attended a Montessori school, and later a middle school and junior high that were progressive and inclusive. His high school was one of the best in the state. Yet, like many parents of blind children, we still wanted more. We wanted sight.
Fighting against the tide is one activity that we as parents all seem to share. From experience and from our informed intuition we know what it is like to fight, to resist, to explore, and to fight again the next day. We fight the system, the doctors, and most of all the reality of the diagnosis. Though our friends and neighbors may sympathize, they never completely empathize as can another parent in the same situation. We need the research as well as the community.
Somewhere in those years we began to realize that we, too, were blinded. We could not see what Corbb did see. He could see some things from the car that surprised us. Vacations and ordinary trips to the store reminded us of what he saw. Well-meaning, but intrusive strangers and sometimes ignorant or distant classmates reminded us of what we wished he did not see. And then came those magical times when none of that mattered at all, and we were just a family unto ourselves. The sights we all saw and those that we didn't even notice became our world of discovery for one another when we took the time to notice and share.
And now we heard Corbb's answer to the psychologist, "I can't think of anything really...maybe better vision, but I'm not sure it's really necessary." Each of us felt a bit reassured, the encouragements of all those vision teachers over the years coming to the fore. We felt a little sad, too—we always had mixed feelings at these meetings. And finally we were impressed that this final IEP was a reminder that Dr. Dushman was right after all. Corbb sees what he sees, and for him it is fine, enough, perhaps even great.
We realized, too, in that distinct moment at our last IEP that our vision had changed. We had hoped for physical sight through all those years, but maybe it wasn't really necessary after all.