How Families Of Children With Disabilities Can Find Support

Susana Ruiz sat in the doctor’s exam room in San Jose, California, unable to smile, open her right eye or even take a sip of water.

“The only way to solve this is if you take care of yourself,” the doctor told him sternly. “You can’t take care of anyone else right now.”

It was 2014 and for several months, Ruiz’s only attention had been on his 2-year-old son, Santiago. Ruiz wanted to do everything he could for his little one, who had recently been diagnosed with autism. He sought services, took him to specialists, pored over autism research and tried to manage his challenging behaviors while caring for his oldest child. She felt sad and exhausted, but she tried hard to keep going.

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That is, until the right side of his face became paralyzed, a temporary condition known as Bell’s palsy. The doctor attributed it to stress.

“That influenced my experience,” Ruiz said. “I had to get tools to learn to manage the stress I was facing.”

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 a demanding job. Without adequate support or rest, parents can end up feeling exhausted 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 seek help, connect with other families of children with disabilities, and prioritize self-care.

“The buildup of stress and caregiving burnout is actually 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, do not practice self-care, it is very difficult to do what we do for our children.”

The stress of caring for a child with a disability goes beyond the care itself. Navigating the complexities of the medical system, disability programs, public benefits, and special education can be overwhelming, especially if the caregiver’s first language is not English. Many parents struggle with strong emotions such as grief and may even blame themselves for their child’s diagnosis. Financial pressures increase if one spouse has to leave their job to care for the child or if insurance doesn’t cover medical bills. Marriages can become strained. Siblings may act out because the disabled child receives so much attention.

For many parents, including Ruiz, one of the most powerful ways to manage these stressors and reduce feelings of isolation is to find a support group. After her Bell’s palsy diagnosis, Ruiz enrolled in a research program at Stanford University designed to help parents of children with autism develop 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,” Ruiz said. “Being able to hear other parents’ stories and have them share their resources and stories was very inspiring.”

Ruiz also began looking for more time to rest, go for walks and do other things he enjoyed. She shared more caregiving responsibilities with her husband. She attended yoga classes and learned to meditate. Today she is 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 you fully immerse yourself 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 face.”

Tips to control stress:

  • Practice self-care. This means taking care of your own well-being 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 throughout the day, or moving your body by going for a walk, dancing in the living room, or practicing yoga. “Take it easy,” advises Daane. “Stop and breathe. “None of us can do everything, all the time.”
  • Find support. There are organizations that offer resources and information for families caring for children with disabilities. Some, like Parents Helping Parents, offer one-on-one guidance, often from parents who have raised a child with disabilities themselves. Many also host parenting support groups in person and online, including groups in Spanish.
  • Change your way of thinking. Ruiz offered this recommendation for parents who feel trapped in negative thoughts about their children’s condition or their ability to care for them. She recommends trying to find positive things to focus on, like a small improvement in your child or her achievements, and thinking about the gifts your child brings to her family and community. For example, Ruiz said that Santiago’s condition has made her family and others around him more accepting of differences, and that his outgoing behavior brightens people’s days.

This story was produced in collaboration with the California Health Report.

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