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Al and Janice Geniviva enjoys the ski slopes with Juliet and Albert.
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Al and Janice Geniviva of Portersville, Pennsylvania, USA, are the parents of Juliet, who was diagnosed with Down syndrome at birth, and her older sibling Albert. They remember clearly how their daughter's diagnosis was delivered to them. "The hospital pediatrician introduced herself and then began asking us about our ages and ancestry, without revealing the purpose of her questions," they explained. "We found that unusual and alarming. Finally, we had to ask: What did these questions have to do with Juliet?"
Only then did the pediatrician explain that Juliet had Down syndrome. "It was a torturous experience," they said. "We decided right then that we would never be influenced by anyone's negative attitude."
The Genivivas want other parents to have a better experience than theirs. "Ideally, the health professional responsible for diagnosis would take a direct approach to informing the parents of a newborn child about a distinguishable disability. Then, the caregiver would explain that raising a child with a disability is very much different today than it was in the past and that many opportunities are available to enable individuals to lead meaningful, productive, and independent lives."
Their vision is already a reality for families in Rhode Island, USA. For several years, a joint effort between Special Olympics Rhode Island, the state's Down Syndrome Society, and local hospitals has been advising new parents of children diagnosed with Down syndrome about support and resources available to them — including information about local Special Olympics programs. Special Olympics Rhode Island Public Relations Director Gerri Walter recalls a poignant moment when an expectant mother, told by her doctor that her child would be born with Down syndrome, called the Rhode Island office to ask if she could attend a Special Olympics competition. "She wanted to focus on the positive experiences her child could have," Walter said.
When a child is born, all parents want to know the possibilities, not the impossibilities. Those possibilities also need to be shared among parents, which is another objective of the outreach goal — a family-to-family support network. Each Special Olympics Program and sub-Program will be encouraged to compile its own support list of families.
When their daughter, Juliet, was two months old, Al and Janice Geniviva joined a support group of parents who also knew what it was like to face daunting challenges and search for answers. "It was very comforting to talk to other people who understood exactly what we were feeling," they say. "We think that it was very helpful in contributing to Juliet's success — and ours."
Although Juliet is too young to be a Special Olympics athlete yet, her father has already become a certified ski coach for Special Olympics Venango County, located outside Pittsburgh, Pennsylvania. Al works in a state center for people with mental retardation; several of the residents are Special Olympics skiers. Al and Janice also are developing an equestrian therapy center on their farm, which will be available to Special Olympics athletes for training and competitions. |
