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Mother of Disabled Child Channels Her Pain Into Action to Help Others

April 08, 1993|SUSAN PATERNO | SPECIAL TO THE TIMES

SOUTHEAST AREA — Cindy Venuto had a normal first pregnancy. She didn't smoke, didn't drink, took her vitamins, got lots of exercise. So when her first child, LaRissa, was born partially deaf, missing an ear, with scoliosis and neurological and respiratory problems, "it was very difficult at first," she said.

"The doctor told us she would only survive till a year old. I didn't even want a baby shower," Venuto said, "because I didn't want any more pain."

But Venuto channeled her pain into action, helping other parents and professionals start a resource center for Southeast Los Angeles families with children whose disabilities range from spina bifida to Down's syndrome and cerebral palsy.

The center, called CORE for Collaborating on Resources and Education, opened nearly five years ago as part of a network of 16 councils throughout Los Angeles County funded with state and federal grants, Venuto said. In October, CORE opened its first office in Whittier so staff members would no longer have to work out of their homes. Since then, the volume of calls has increased to 10 a day from parents in need of help.

"Parents are out there all alone, fighting," said Venuto, a Santa Fe Springs resident. As project coordinator for CORE, Venuto listens to parents at the center and refers them to professionals. "Now families have one place to go where they know they can find the help they need."

Venuto, 29, learned the hard way about the need for a resource center from her own experience with LaRissa, whose neurological disability is called holoprosencephaly. In the early years, Venuto and her husband, Rick, often felt lonely and isolated, unable to find the right professional to talk to about problems ranging from paying medical bills to finding specialized services for their child. "It was like hope and search, hope and search, all the time," she said.

"After (LaRissa) was born, I wasn't sure I was going to live a normal life again. It's sort of like readjusting your dreams. I wanted her to go to school across the street, to take ballet lessons," Venuto said. "Some of those dreams we did realize."

One of the biggest dreams was enrolling LaRissa in a regular kindergarten class. Defying her doctor's prediction, LaRissa, now 7, is learning to talk and she will probably attend regular classes throughout her school years, Venuto said.

"I want people to know (LaRissa) for who she is as a little kid, rather than because she has a disability," Venuto said. "She loves cartoons, 'Beauty and the Beast,' and she's stubborn sometimes, like any other 7-year-old."

Along with helping parents whose children have disabilities, CORE tries to give the community "a basic understanding of disabilities," Venuto said. "So that (children with disabilities) are looked at as children and people first. Some people don't even want to be congratulated when they have a child with a disability. But it's a beautiful baby."

CORE officials hope to begin sending families whose newborns have been diagnosed with disabilities a note "to let them know they don't have to feel isolated," Venuto said.

Venuto plans to continue working with CORE and a support group she started for families in Santa Fe Springs and Whittier called "You've Got a Friend." She hopes to strengthen CORE's ties to hospitals and pediatricians to bolster the organization's growing referral system and connect it to an even larger network of experts and professionals, she said.

But most important, she said, is the simple dream she has for LaRissa: "I want her to work and live in the community."

Daniel F. Dominik of Downey was recently named engineer of the year, Rockwell International Corp.'s highest honor for technical achievement. Dominik, 41, a senior engineering specialist at Rockwell's Space Systems Division in Downey, was one of 15 Rockwell engineers and scientists to receive the honor. The award acknowledges outstanding technical achievement among Rockwell's 16,000 engineers and scientists worldwide. Dominik was honored for his work on the Space Shuttle.

Los Alamitos resident Dr. Marcy L. Zwelling-Aamot was appointed to the Task Force for Health Care Access in Los Angeles County by Supervisor Deane Dana. Zwelling-Aamot has been a doctor in Long Beach since 1990. Before that, she had practiced emergency and internal medicine in Los Angeles County for 13 years. She is an officer of the Long Beach Medical Assn. and a member of Women in Business in Orange County, the American Board of Internal Medicine and the American and California medical associations.

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