by Carol Castellano
Good morning, fellow Federationists. So many of you know—or at least know about—my daughter Serena. I’ve been writing about her for her whole life. In fact I’m considering designating each one of you honorary godfather—or godmother—for the role you’ve had in her upbringing.
Serena was born four months premature. She weighed only one pound five ounces, needed surgery after surgery, which set back her development. She spent the first seven and a half months of her life in a neonatal ICU. She was left with the aftermath of extreme prematurity: she became blind, was seriously undersized, had muscle weakness and developmental delays. She was unable to move her facial and oral muscles voluntarily and so was unable to chew—or to talk. Her shoulders were so hyperextended from her arms being tethered to her bed with IV lines that they hung limply behind her.
At one year she could not sit up; at three she could not chew solid foods; at five she still could not talk. Hopes were not high among the many professionals who came into our lives at that time. There was the developmental pediatrician who said to me, “You’d better start treating her as retarded.” I wondered what that even meant. There was the IEP team that placed her in the preschool class for the “low-functioning” children. There was the teacher of the blind who refused to give us stick-on Braille—we wanted to make alphabet blocks for her, because she had made the decision when Serena was twelve months old that she would never read.
Well I’m happy to report that Serena graduated from college a year ago, and even better than that, she successfully landed her first job. How did she get from her precarious beginnings to where she is today? The answer, my friends, is sitting in this room. She got there because of the National Organization of Parents of Blind Children and the National Federation of the Blind!
We were lucky to be introduced to the Federation and to NOPBC when Serena was just a baby. A social worker gave us some books and papers to read when she was in the hospital having eye surgery. One of those books was Doris Willoughby’s Resource Guide for Parents and Teachers of Blind Children. I read that book right there in the hospital room, and, as I read, I could feel myself being lifted up. It was our first inkling that maybe things could be all right.
I should tell you that the social worker returned to the room and told us, “This organization has some pretty good literature, but keep away from them, ‘cause they’re radical and militant. My ears perked right up, and the first phone call I made when we got back to New Jersey was to the National Federation of the Blind. As luck would have it, I was put through to Barbara Cheadle, and it was with growing excitement that I listened to her empowering message about expectations, skills, opportunity, and the path to a normal life for our daughter.
Perhaps my family would eventually have found that path on our own, but because of NOPBC we found ourselves fast-forwarded along the road toward competence, confidence, self-sufficiency, and independence for our daughter. This is what NOPBC does. It shows parents the possibilities and then helps them find their way.
From our literature—and I am especially grateful for the writings of Doris Willoughby and Ruby Ryles—to our workshops, from our advocacy to our comraderie, NOPBC is a potent force for spreading our positive message about blindness to parents, schools, and the wider community. NOPBC certainly helped my family through the challenges we faced during Serena’s early school years and rejoiced with us when things went smoothly thereafter.
The years flew by, and, before we knew it, we were visiting colleges. Serena fell in love with Manhattanville College because it had two institutes for social justice—and no disabilities students’ office. She applied early, was accepted, and received a board of trustees scholarship. I’m happy to tell you that she lived away from home, got herself to meals and classes, and tells me that, yes, she even did her laundry.
Serena majored in sociology and minored in social justice. And some night when you turn on the TV news and they’re showing all those people handcuffed around a tree, look for the one with the cane. That’ll be my Serena. At college she handled her coursework, wrote her papers, downloaded e-files, hired and fired readers, and made the dean’s list most of her semesters. We’re very proud of her, but even more important than her academic success were the social experiences she had. Speaking of experiences, I will close by telling you how we knew that Serena was really in college. The first weekend she called and said, “Mom, I’ve been invited to an off-campus party at a senior’s apartment. I know there’s going to be drinking there, and I’ll have to get a ride from somebody I don’t know, and I don’t know whether that person is going to drink and drive, and I’m trying to decide what to do.” She told me eventually that she never did go to that party. A few weeks later she called and said, “Mom, my roommate is having a guy sleep over for the weekend.”
I said, “What kind of guy, a guy who is going to sleep on the floor, a friend guy, or a guy who is going to be in bed with the roommate?” At this point, my son, who is a couple of years younger, comes running in from the other room and says, “Mom, give me the phone.” He gets on, and he says, “Serena, when you have questions like this, you don’t talk to Mom. You talk to me.” They both assure me that that boy never slept over, and I believe them.
Then there was the wild roommate who, shall we say, was responsible for an interesting expansion of Serena’s vocabulary. And the night she called me and said, “Mom, you’re going to be so happy for me. A bunch of us are going into the city to celebrate Megan’s birthday, and I need $60.”Serena’s success simply would not have occurred without the enlightened positions, progressive programs, and tenacious advocacy of the NOPBC. It is with profound gratitude, deep respect, and great joy that I celebrate our wonderful role models, mentors, and friends in NOPBC and the Federation and join in the celebration of NOPBC’s first twenty-five years!