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How One Bay Area Organization is Helping Asian American Families Find Support

Claudia Boyd-Barrett
Photo by Sasiistock/iStock

When Anna Wang’s son, Lawrence, was diagnosed with autism almost 30 years ago, she and her husband felt lost.

It was the early 1990s, and there were almost no support services in the Silicon Valley area geared toward Asian American families of children with special needs. The Wangs struggled to deal with their son’s behavior and communication challenges. They worried about his future and whether he’d ever reach his full potential. They felt stressed and alone.

“My husband was a physician, and I was an engineer,” Wang said. “We had overcome many challenges in our lives, but having a child with special needs has got to be one of the biggest challenges we have encountered.”

Caring for children with disabilities — whether they have a developmental disorder like autism, a physical disability, a chronic medical condition or a combination of these — is demanding work. Without adequate support or rest, parents can end up feeling depleted and isolated. Stigma in some communities over having a child with disabilities can deepen this isolation. Some parents develop physical or mental health problems as a result. The solution, according to experts and parents who have faced these challenges themselves, is to reach out for help, prioritize self-care and connect with other families of children with special needs.

That’s what Wang did. In 1996, she was part of a group of 10 Asian American families who founded a support network for people with disabilities and their caregivers. They started by hosting gatherings where families could meet each other and discuss how to access care and resources for their loved ones. The organization eventually became a nonprofit called Friends of Children with Special Needs. Today it serves over 1,500 Bay Area families, about half of them Chinese American, and offers a variety of programs across three locations, from after-school enrichment activities to adult day care and employment services. Parent support groups remain a flagship program, said Wang, who is now vice president of the nonprofit.

“We wanted to bring happiness to individuals with special needs and peace of mind to the families,” Wang said. “As parents we felt that if we can bond together that would be so much more powerful than trying to do everything by yourself.”

The stress of caring for a child with disabilities goes beyond the caregiving itself. Navigating the complexities of the medical system, disability programs, public benefits and special education can be overwhelming, especially if a caregivers’ first language isn’t English. Many parents wrestle with strong emotions such as grief and may even blame themselves for their child’s diagnosis. Financial pressures mount if one spouse has to quit work to take care of the child or medical bills aren’t covered by insurance. Marriages can become strained. Siblings may act up because the child with disabilities gets so much attention. 

Another challenge is stigma. Wang said about half of the families she meets struggle with this. Some keep their child with special needs at home, not even disclosing the disability to their closest family members and friends. This leads to further stress and anguish for the parents and is detrimental to the child because they don’t get the resources that can help them live a fuller life, she said.

Kelly Ko, program director for the organization’s East Bay outreach and enrichment programs said she meets families who don’t know what services are available to them or how to apply for government programs. The nonprofit has parent navigators who can assist families with this. But sometimes, even when families are approved for a service such as respite care through the San Andreas Regional Center, they can’t always access it. That’s because there aren’t enough providers, especially those that share the family’s language and culture, Ko said. Friends of Children with Special Needs, for example, has respite caregivers who speak Mandarin, Vietnamese and several other languages, but demand is so high that there are dozens of families on the waiting list. 

Given this reality, support groups and events are a key resource for families, Ko said. Friends of Children with Special Needs runs online support groups in Mandarin and Cantonese twice a week, as well as monthly coffee socials, seminars and family outings. 

“The family support (events) is where families feel like, ‘OK, I’m not alone in this journey. I have resources. I have people I can share my experiences with,’” Ko said. “That makes a big difference. If you feel like you’re alone and you’re just going through this journey to nowhere, it’s tough. But if you have other people and families and a support system, I think it takes a lot of that stress and burden off because they feel like they have someone to go to.” 

Today, Lawrence Wang is 33 years old. Thanks to the support groups and programs his mother helped create through Friends of Children with Special Needs, he is now a professional musician who plays six instruments and sings. He has performed across the Bay Area and internationally. His success inspires Anna Wang to continue helping other families access resources and programs that can help their loved ones with disabilities thrive. 

“There are just so many of these types of stories waiting to be found,” she said. “After I discovered Lawrence’s talent it became my mission to give all special needs individuals … a chance to shine in front of the community.”

Tips for managing stress.

Here are some top recommendations from parents and experts we talked to about how to manage the pressures of caring for a child with special needs:

Resources

Looking for help outside of the Bay Area? You can find parent resource organizations in other parts of the state using these directories:

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