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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 more than 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:
- Practice self-care. This means taking care of your own wellbeing by doing things that help you feel more rested and energized. This includes eating well, getting enough sleep, and doing restorative activities. This can include taking a few moments to breathe and be still during the day, or moving your body by going for a walk, dancing around your living room or practicing yoga.
- Find support. There are organizations across the state that offer resources and information for families caring for children with disabilities. Some, including Friends of Children with Special Needs, offer one-on-one guidance, often from parents who have raised a child with disabilities themselves. Many also run in-person and online support groups for parents, including groups in Chinese and other languages. See below for organizations in the Bay Area.
- Persevere: Help is out there, even though it can take some work to find it. “Don’t give up,” Kelly Ko tells parents. “There are many resources out there, you just need to find ones that can help. Just reach out to us if there are any questions, we’ll help you through it. Just keep your spirits up and learn as much as you can so that you know how to advocate for your child.”
- Shift your mindset. Susana Ruiz, a parent in San Jose caring for a child with autism, offered this recommendation for parents who feel stuck in negative thoughts about their child’s condition or their ability to care for them. She recommends trying to find positive things to focus on, such as a small improvement in your child or accomplishments, and to think about the gifts that your child brings to your family and community. For example, Ruiz said her son’s condition has made her family and others around him more accepting of differences, and that his outgoing demeanor brightens up people’s day.
You can find parent resource organizations using these directories:
- Parent Centers. These centers offer support, services and information for families of infants, toddlers, children and youth with disabilities, from birth to age 26. There are nearly 100 Parent Training and Information Centers and Community Parent Resource Centers in the U.S. and territories. Find yours here: parentcenterhub.org/find-your-center
- Parent to Parent USA has a network of organizations across most of the country that can match you with a trained Support Parent who has faced similar challenges raising a child with disabilities or special health care needs. Visit p2pusa.org to find out more.
- The Autistic Self Advocacy Network has information and resources for parents of children with autism, including a guide to autism and therapies. Visit autisticadvocacy.org. Other helpful autism-related resources can be found at the Autism Society (autismsociety.org) and the National Autism Association at nationalautismassociation.org.
This story was produced in collaboration with the California Health Report.
Claudia Boyd-Barrett is a longtime journalist based in southern California. She writes on topics related to health care, social justice, and maternal and child well-being. Her investigative stories on access to mental health care have resulted in legislative and policy changes.