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, 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, “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, and can be even more 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.
Take it Easy : Tips for Managing Stress
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.”
There are organizations across the country 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. Many also run in-person and online support groups for parents.
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 small accomplishments. 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.
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.”
This story was produced in collaboration with the California Health Report www.calhealthreport.org
Help is Here : Resources for Parents
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.
Parent to Parent USA
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.
The Autistic Self Advocacy Network
The Autistic Self Advocacy Network has information and resources for parents of children with autism, including a guide to autism and therapies.
Other helpful autism-related resources can be found at the Autism Society autismsociety.org and the National Autism Association at nationalautismassociation.org
ABOUT THE AUTHOR:
Claudia Boyd-Barrett is a long-time journalist based in Southern California. Her investigative stories on domestic violence and access to mental health care have resulted in legislative and policy changes, on both the state and county level. Her stories have won dozens of awards and appeared in the Los Angeles Times, the Sacramento Bee and the San Francisco Chronicle, among others. She is a two-time USC Annenberg Center for Health Journalism fellow and a former Inter American Press Association fellow. She is fluent in Spanish. As a single parent who has experienced financial insecurity, Claudia understands the challenges facing low-income families in California and the role of public health care and other safety-net programs. She is passionate about using journalism to elevate the voices and perspectives of people and communities disproportionately impacted by inequality.
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