Susana Ruiz sat in the doctor’s exam room in San Jose, unable to smile, open her right eye, or even take a sip of water.
“The only way this is going to remedy is if you take care of yourself,” the doctor told her sternly. “You can’t take care of anybody else right now.”
It was 2014, and for several months, Ruiz’ sole focus had been on her 2-year-old son, Santiago. Ruiz wanted to do everything she could for her little boy, who had recently been diagnosed with autism. She sought out services, drove him to specialists, pored over autism research, and tried to manage his challenging behaviors while also caring for her older son. She felt sad and exhausted but pushed herself to keep going.
That is, until the right side of her face became paralyzed, a temporary condition known as Bell’s Palsy. The doctor attributed it to stress.
“That pivoted my experience,” Ruiz said. “I had to get tools to learn how to manage the stress that I was dealing with.”
Caring for children with special needs — 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 alone. Some, like Ruiz, develop physical or mental health problems. The solution, according to experts who work with families and parents who have faced these challenges themselves, is to reach out for help, connect with other families of children with disabilities, and prioritize self-care.
“The buildup of stress and care exhaustion is really very common,” said Maria Daane, executive director of Parents Helping Parents, a support center for parents of children with disabilities in San Jose. “Raising a child with a disability is a marathon. If we as caregivers don’t practice self-care, it’s very difficult to do what we do for our children.”
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.
For many parents, including Ruiz, one of the most powerful ways to handle these stressors and reduce feelings of isolation is to find a support group. After her Bell’s Palsy diagnosis, Ruiz signed up for a research program at Stanford University designed to help parents of children with autism build their resilience. The program included group therapy sessions with other parents who shared the struggles they were going through.
“I understood that what I was experiencing was common,” said Ruiz. “Being able to hear other parent’s stories and have them share their resources and stories (was) very inspiring.”
Ruiz also began carving out more time for herself to rest, go for walks and do other things she enjoyed. She shared more of the caregiving responsibilities with her husband. She attended yoga classes and learned to meditate. Today she’s a volunteer advocate for other parents of children with disabilities through Parents Helping Parents. Her top advice for parents whose child has a new diagnosis? Find a support group before getting fully absorbed in finding resources for the child.
“There are a lot of families that I encounter that are in that chronic stress mode,” she said. “Finding community, finding communication and advocacy, is key to reducing some of the challenges parents encounter.”
Tips for managing stress:
- 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. “Take it easy on yourself,” Daane advises. “Stop and take a breath. None of us can do it all, all the time.”
- Find support. There are organizations across the state that offer resources and information for families caring for children with disabilities. Some, such as Parents Helping Parents, 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 Spanish. See below for organizations in the Bay Area.
- Shift your mindset. Ruiz 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 Santiago’s condition has made her family and others around him more accepting of differences, and that his outgoing demeanor brightens up people’s day.
- Parents Helping Parents offers support and information for parents caring for children with disabilities in English, Spanish and Vietnamese. This includes online information on hundreds of topics, webinars and access to support groups. For parents in the Silicon Valley area, they offer one-on-one phone support from trained family resource specialists who can answer questions and help find resources.
- Support groups are listed here.
- To find programs, medical services and other resources in your area, including those that speak Spanish search the resource directory.
- Resources for families of children with disabilities transitioning to adulthood are available here.
- For general information visit php.com, call 408-727-5775 or 855-727-5775, or email email@example.com
- San Andreas Regional Center serves individuals with developmental disabilities and their families who reside within Monterey, San Benito, Santa Clara and Santa Cruz Counties. Visit sanandreasregional.org
- Autism Society, San Francisco Bay Area offers resources and organizes events for people in the autism community. To find upcoming opportunities to meet other families visit the events calendar.
- Children’s Health Council works with families living with ADHD, learning differences, anxiety and depression and autism. They offer evaluation and therapy services, free educational resources for parents, and parent support groups. For more information visit chconline.org or call 650-688-3650.
- Support for Families offers free resources, events and parent-to-parent support for families in the San Francisco Bay Area, including in Spanish. Find out more at supportforfamilies.org or call 650.688.3625.
- The Disability Rights Education & Defense Fund offers parent training, education and advocacy for families of children and young adults with disabilities throughout Northern California. Visit dredf.org/special-education/students-k-12, call 800-348-4232 or email firstname.lastname@example.org
- AbilityPath in San Mateo County provides parent-to-parent support, outreach, information and referral services to families of children with special needs and disabilities, and the professionals who serve them. Visit smcfrc.org or call 650-259-0189.
- Matrix Parent Network and Resource Center in Marin County mentors families of children with special needs or at risk for special needs. Visit matrixparents.org or call their helpline at 800-578-2592.
- Stanford Medicine Early Support Program for Autism provides supportive services at no cost to families of individuals with suspected or diagnosed autism. Services are available in English and Spanish. Contact email@example.com
Looking for help outside of the Bay Area? You can find parent resource organizations in other parts of the state using these directories:
- parentcenterhub.org/find-your-center (For families of infants, toddlers, children and youth with disabilities, from birth to age 26)
- seedsofpartnership.org/fec/index.cfm (For families of children and young adults with disabilities, between the ages of 3 and 22 in California)
- frcnca.org/get-connected (For families of children ages 0 to 3)
- autisticadvocacy.org (Has a guide to autism and perspective from the Autistic Self Advocacy Network)