It was 2003. Jeannette Christie of Throggs Neck had to choose. Go to work in Manhattan or escort her legally blind son to a performance at the New York Institute for Special Education (NYISE) on Pelham Parkway.
Christie chose Thomas and her world changed. At the performance, she met National Association for Parents of Children with Visual Impairments (NAPVI) executive director Susan LaVenture. Christie quit her job to launch a NAPVI chapter in NYC.
NYC NAPVI helps parents find information and resources; Christie offers leadership, support and training. Her business cards wait in eye clinics around the city for shell-shocked parents to grab.
“When we had [Thomas’] diagnosis, we were stressed and lonely,” Christie remembered. “When you think of blind people, you think of Stevie Wonder. It was hard.”
Thomas was six months old when Christie noticed his eyes turn in and his head start to shake. He underwent a battery of tests before the diagnosis: chromatopsia. Thomas sees only within ten feet and his eyes are sensitive to light. Chromatopsia is a rare genetic disorder. Christie and her husband are both carriers; neither has chromatopsia but together they were able to pass it on to Thomas. Christie was raised in the south Bronx, her husband in Throggs Neck.
Thomas attended P.S. 14 until fourth grade, when other students began to tease him. Although Christie praised the public school, she’s glad that Thomas transferred to NYISE. In ninth grade today, he’s a good student and a competitive wrestler. Thomas is funny and independent. He doesn’t dwell on his disorder and you wouldn’t guess. But there are challenges. At buffets, he leans in close to choose his food. On the basketball court, he wears red-tinted goggles. On the street, he listens for traffic and crosses only at crosswalks.
“Simple parts of life we take for granted,” Christie said.
The woman behind NYC NAPVI wants other parents to know what to expect. In her office at NYISE, Christie arranges workshops and conferences. She networks and escorts NYC NAPVI children to museums. She hosts a Christmas party.
Visual impairments know no color or creed and NYC NAPVI boasts an assorted membership. There are families from the Bronx and Brooklyn, Queens and Staten Island. There are families from India and Puerto Rico. Christie will soon publish her newsletter in English, Spanish and Chinese.
Thomas’ diagnosis pushed Christie to start NYC NAPVI. Hers is a quiet life, at home at Clarence and Lafayette avenues, at work on Pelham Parkway. But hers is a commendable life, too.
©2009 Community News Group