Six years ago I met a group of parents who come from the humblest of places all over Kern County.
They don't have a lot of formal education, are learning English, work in whatever jobs they can get -- yet are experts in dealing with children who have special needs such as autism, Down syndrome, cerebral palsy and other developmental disabilities.
They've become experts out of necessity, dealing with and helping their children adjust and learn to live with any disability they were born with. But there is still a long way to go in getting professional help for both parent and child. That's where the sixth annual Celebracion de Familias Excepcionales conference, or A Celebration of Exceptional Families, comes in.
This year on April 28, the event was born out of a major need to help a significant part of Kern County's population better understand all aspects of developmental disabilities as well as navigate what can often be a bureaucratic nightmare in dealing with and obtaining help from social service agencies. It's an event where families can obtain resources and services for their children with special needs.
The Celebracion conference is done entirely in Spanish with translation available. It's sponsored by Kern Regional Center and H.E.A.R.T.S. Connection Family Resource Center along with help from parent volunteers. All prior conferences have been excellent. Planning takes months and is done with active participation of parents who help create the agenda, tailored to what they and their children most need.
The conference was the brainchild of three key staff members -- Vivian Arreola, Grace Huerta and Virginia Gantong. Learning from experience and the need in the community, these ladies saw an opportunity to serve a marginalized group. They approached their bosses. The idea was immediately endorsed by then-KRC executive director Dr. Michael Clark.
The event has made an impact on parents such as Susana Sepulveda. When her son Mauricio was 9 years old, he was diagnosed with muscular dystrophy and later with attention deficit disorder. No one in Sepulveda's family had ever been diagnosed with any sort of disability before her son and she was at a loss to explain why. At times she grew frustrated, seeing her son couldn't do what other children could.
"We all ask, 'Why me?'" Sepulveda said. "God gave me this for a reason, so I can't let it get me down," she said.
Doing whatever she's had to do to help her son, Mauricio is now a student at Bakersfield College and wants to major in business administration. It's taken time and Mauricio still struggles, but he's making progress.
It's been a similar story for Luis and Sandra Cuadra, whose son Christian was diagnosed with autism at 3. "We were so new to this kind of situation we had no idea what to do," Luis Cuadra said.
The couple struggled and the situation put a lot of stress on their marriage. "A situation like this can either bring you closer together or it can destroy you," Cuadra said. The couple has persevered and today Christian is high functioning despite his autism. Christian loves to sing and a couple of years ago, he belted out a song with a mariachi at a Celebracion conference. Christian was a hit. Like Sepulveda, Luis and Sandra Cuadra decided not to have any more children, afraid another child might be born with a similar condition.
"Our kids are not a cross, they're a blessing," said conference director Grace Huerta, who has a 17-year-old autistic son.
It's in this context that parents come together not just for information, but to hear and share their experiences. Organizers wondered how many parents would show up to the first conference.
"We were expecting to see maybe 50 or so and call it a good day," said Virginia Gantong with Kern Regional Center. More than 300 participated. Following years saw higher numbers as parents from as far away as Los Angeles and Fresno attended.
This year's agenda is packed with dynamite speakers and workshops. The keynote speaker is Dr. Maria S. French, an expert in abnormal psychology. Accomplished in her own field, she also worked for the Los Angeles Unified School District for more than 30 years as a teacher and counselor. Did I mention Dr. French was also born with cerebral palsy? She was the first "severally disabled" person to be hired by LAUSD as a teacher and counselor.
This event has given me an insight I had never known before. I've been honored to serve as master of ceremonies. To say it's been rewarding would be an understatement; it's been a pleasure.
The conference will be held this coming Saturday at the Double Tree Hotel. Registration starts at 7 a.m. Cost is $50 per person but financial aid is available. For more information, call (661) 327-8531 and ask for Virginia Gantong.
Jose Gaspar is a reporter for "KBAK/KBFX Eyewitness News" and a contributing columnist for The Californian. These are Gaspar's opinions, not necessarily The Californian's. Email him at firstname.lastname@example.org.