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Tiffany Cheng looks like a beautiful Chinese doll, with her big black eyes and radiant skin, her shiny black hair tied in two braids. But like a doll, the 8-year-old girl cannot talk. She can barely move. She has Rett Syndrome, a neurological disorder that causes the loss of acquired speech and mobility.
Tiffany's mother, Shei-fun Yeh, 48, says, "She is a beautiful soul captured in a bad body."
Tiffany's "bad body" has prevented her from making friends. Children of her age don't like playing with her because she doesn't speak and moves slowly. But Tiffany has found a sense of belonging at the Organization for Special Needs Families, where she meets and exercises with children who have different types of disabilities.
"This is like her second home," Yeh says. "She is happy here."
The nonprofit Organization for Special Needs Families, which just celebrated its first anniversary in April, provides a supportive learning environment for its 28 members and their families. Members' disabilities range from autism to cerebral palsy to mental retardation. The group meets every Saturday afternoon at St. Jude Church, 20920 McClellan Road.
"Children of special needs have few after-school activities. There aren't many places they can go without raising other people's eyebrows," says Lihuei Wei, president of the organization. "The children can learn and have fun here. It also gives the children a break from their parents and the parents a break from their children."
Wei, 49, understands how lonely and isolated parents of disabled children feel. Her 12-year-old son, Jonathan, was diagnosed with autism when he was 4. When she takes him to parks, Jonathan's flaps his hands or rocks his body, scaring other children.
Feeling there was a need to better serve families with special needs children, Wei started the organization at her house with eight families, four of whom had disabled children and four of whom just wanted to help. But the organization soon outgrew her house and was relocated to St. Jude Church.
At the church, the 28 students are divided into four groups, and each group participates in four activity 'stations' designed to help students practice their motor skills, coordination and social skills.
Each student is paired with a trained volunteer. Some students who are strong physically or have the tendency to harm themselves or others require two volunteers. Volunteers usually work with the same student so they can better understand the student's needs. Most of the organization's 200 volunteers are local high school students.
Many children have shown signs of progress after getting involved with the organization. Samuel Shu, a 9-year-old underdeveloped child, refused to walk when he first joined the organization. Volunteers had to carry him from station to station. By the second quarter he was willing to ride a tricycle. Now he totters, although only for a short distance.
"Every small step our children make is a miracle to us," Wei says.
Some parents say progress is too much to ask for. They just want their children to make some friends and have fun.
"We don't expect Tiffany to make big progress," Yeh says. "It is OK if she can just lift one arm and a little bit of her leg while other children are running. At least she is stretching and having a good time."
While the students take classes, the organization provides seminars for parents. Those who don't go to the seminars have coffee together while waiting for the dismissal of the classes. Wei says the weekly meeting serves as a social outlet for the parents, too.
"When my son was diagnosed with autism, I blamed myself. I was angry with my husband, and Jonathan's brother felt I didn't love him because I paid so much attention to Jonathan," Wei says. "It is important you can share your sorrow and joy with someone who understands what you have been through."
The weekly meeting is also a rewarding experience for volunteers.
Yi-xuan Huynh, a junior at Monta Vista High School, began volunteering for the organization a year ago after seeing an advertisement on television. He is usually paired with Jimmy Wheat, an 11-year-old boy with autism. When Wheat acts out, Huynh whispers in his ear or takes him to jump on a trampoline, one of Wheat's favorite activities.
"Sometimes it is frustrating because I don't always understand what he needs," Huynh says. "But when he sees me, he walks up to me and holds my hand. I feel I have a positive influence on his life."
For more information about the Organization of Special Needs Families, call Lihuei Wei at 408.996.0858.
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