Tom Sullivan: his parents never took "no" for an answer.
I was born five months premature in 1947 in a hospital just outside Boston. Too much oxygen in my incubator I caused a filament to form over the corneas of my eyes, a condition known as retrolental fibroplasia. As a result, I'm blind. However, blindness may have been the best thing that's ever happened to me. I've enjoyed a world of senses that many people never take the time to appreciate. This appreciation didn't come naturally; it was molded by the love and dedication of my parents.
I cannot imagine what it was like for my parents to sit in the office of the most famous ophthalmologist of the time and listen while he told them they had a blind son. My mother still quotes him today: "Mister and Missus Sullivan, take him home and love him. Or institutionalize him. Those are your only alternatives." My parents chose the first option; they took me home and loved me.
Recently, my mother has begun to talk about my childhood. It saddens me to hear how painful it was for her to raise a blind child. However, she believed her child should not be limited by his disability.
When I was five years old, I was sent to the Perkins School, a boarding school for blind students less than an hour away from my home in Boston. Every Friday night, my parents brought me home for the weekend.
My mother still talks about the first time they brought me to Perkins: "I watched this little child being taken away by a very kind house person. You got the message that you were not going to be with us and I had to stand there while you kicked and screamed and fought them." Even at five, I understood that if I weren't blind, I wouldn't have had to be at that school. I knew that I wanted to be included with sighted children.
Extracurricular activities were my ticket out of loneliness, and I was blessed with parents who allowed me to become all the things I hoped to be. Whenever my parents were told I couldn't do something, they found a way to allow me to do it. For instance, once they knew I was musical, they did everything possible to bring music into the house. My father would bring barroom musicians home at night and we'd play Irish songs until four in the morning. Then, he found out that I liked gospel music. Picture a white Irish Catholic father taking his son to a Black church so he could sing gospel music. He didn't care what it took. He just wanted me to be happy.
My parents did everything possible to make sure I spent my time with children who could see when I was home from school. But no matter how hard they tried, there were moments that were incredibly painful. I would stand in my backyard, listening to the sound of other kids playing baseball down the street. Every time a boy hit his baseball with his bat, I picked up a rock and hit it with a stick.
One day when I was doing this, a kid passed by and shouted, "How you doin', blindey?" At that moment, I knew that he thought of me as different. It hurt.
After that, my father began designing games that I could play with the neighborhood kids--a buzzer on a basket so I could shoot hoops in the driveway; baseball played with a volleyball bounced on the cement, me swinging at the sound.
I also remember the time my father bought me a pony. That summer, I charged a nickel for any neighborhood kid who wanted pony ride.
Parents of courage and vision
The hardest concept for a person with a disability to understand is the balance of interdependence: How much can I do alone, and how much help must I ask for? This leads to one of the hardest questions for parents: When do I let go?
My mother remembers my first day at Providence College. After checking in, my parents watched while I tried to find the cafeteria. My mother immediately thought back to the day they had brought me to Perkins: "I cried just like I did when you were five. I didn't want to help too much or be in the way. I had to watch you struggle in a completely strange place for this independence."
To be fair, I wanted my freedom, but I would have been just as happy to go back home. Freedom is frightening. You want it, you work for it, you scramble to achieve it, but it's frightening. A blind person is limited by the length of his arm and the length of his stick in a strange environment. Your ears and senses are picking up everything around you, but you know that you're limited by the distance you can reach with your arm and the distance you can touch with that stick. And my parents saw that. "I watched while you asked the first three kids for help," my mom said. "You didn't get it. The kids gave you that kind of `Oh, I don't know. Go ask somebody else.'"
Special Parent, Special Child
Special Parent, Special Child--a book that I am more proud of than any of my others--focuses on feelings all parents with children of disabilities share. When I first spoke about my childhood with my mother, I realized that although I had often been asked what my parents did when I was a child, no one had ever asked how they felt. After hearing my mother speak about her pain, I wanted to let other parents speak openly, to share all the feelings that no one had asked them about before. I interviewed more than 200 families and chose six that I felt could express their experiences with the most insight and eloquence. These families were wonderfully candid in discussing the strain of raising a child with a disability.
Speaking with them, it astounded me to learn that the pain and anguish felt by my parents 47 years ago has not been eliminated, but has only been made sharper by a more complex health system. It was no surprise to discover that parents have strengthened their love for their children and the resolve needed to help them succeed. Caring teachers and school administrators struggle to do a good job with less money and more students. Doctors love and nurture their patients and therapists give of themselves, but they are hampered by a complex and slow-moving health care system. In the end, the success of people like me comes from parents who do not accept "no" as an answer and who are creative, making the most of an environment that contains opportunities for every child with special needs.
|Printer friendly Cite/link Email Feedback|
|Publication:||The Exceptional Parent|
|Date:||Apr 1, 1995|
|Previous Article:||Project Launch welcomes teens and families.|
|Next Article:||When Young Children Are Injured: Families As Caregivers in Hospitals and at Home.|