Erika Cebreros’ youngest son will attend Steve and Kate’s Seattle summer camp for a few weeks this summer. For 8-year-old Andrés, crafting in the camp’s sewing salon is bliss. For Cebreros, it’s one piece of nine months of summer planning.
“Kids, they don’t know what parents go through,” says Cebreros.
The “what” to which Cebreros refers is the unwieldy beast of planning summer care for a child with a disability. And a growing number of parents go through it every year.
Between 2019 and 2021, the prevalence of diagnosed developmental disability in kids ages 3 to 17 in the U.S. increased from 7.40% to 8.56%. Of Washington’s estimated 1.7 million children in Washington, more than 4 percent have a disability, according to the 2019 American Community Survey (Census). In Seattle Public Schools, 13% of its student population (7,000 children) receive disability support services.
The difficult scramble for summer care
Cerbreros’ puzzle-piece organization of Andrés summer is familiar to many parents of children with disabilities. There are moments of joy for the kids and their families when a good fit is found, but there are also a lot of stressors unique to finding disability care:
- Options for camps and activities are limited, with some camps unable to accommodate specific needs
- If camps do accept campers who are neurodivergent or have disabilities, parents are often responsible for providing outside one-on-one support for their child
- Spots for kids with disabilities are often limited by staff size and are in high demand, which means planning for summer care for a disabled child often has to start months in advance, spots fill up fast, and waiting lists are long
- Parents can often spend hours examining what types of accommodations camps can and cannot provide their child and must dig deep to ensure a camp environment will not harm their already vulnerable child emotionally or physically
- Finding appropriate care for kids with disabilities often means mountains of paperwork—and if your child qualifies for scholarships or government funding to cover care, you can expect even more
- The cost of appropriate summer care, camp, or activities for kids with disabilities can feel exorbitant to some families and be a barrier to others
- Parents are often overwhelmed managing their child’s well-being without the support provided by school staff throughout the rest of the year.
Campers at Seattle PlayGarden enjoy a summer day. Photo courtesy Seattle PlayGarden
The search to fill each week
Andrés is autistic and has ADHD. His family prefers that a behavioral therapist accompany him to camp for one-on-one support, which is why Cebreros began discussing his summer care with providers at the behavioral therapy clinic Andrés attends.
By January, clinic staff worked out a schedule so that one therapist could be with Andrés in the morning and another in the afternoon. Their job? To help Andres facilitate social interaction with peers and help him cope when he experiences sensory overload or starts feeling “lost” in a crowd of campers.
Cebreros is lucky. Her work benefits package includes “backup care,” which covers the cost of up to 10 days of childcare per child per year. Cebreros uses the benefit to pay for camp. The behavioral support is covered by health insurance.
For the rest of the summer, Andrés will attend five weeks of an extended school year program at the private school he attends (specializing in neurodivergent learners). He’ll also join his family on vacation in Oregon.
Even with all that planning, there is still one uncovered week of Andrés’ summer care schedule. That means Cebreros may have to take extra time off work.
Scarf play at Love Me Love Us camp. Photo courtesy Love Me Love Us
When there’s no support
Unfortunatley, many families don’t have backup care benefits, cannot take time off from work, and lack acceptable choices for childcare.
Jingde Hsia, founder of the nonpofit Love Me Love Us, says that finding childcare can be especially challenging for single parents. She points to a single mother she knows who works during the day and has no camp or childcare options for her teenage son with autism.
Instead, he will spend the summer at home in front of a screen. His mother worries about his online safety and lack of interaction with others, but feels she has no other choices.
Getting creative
Despite the challenges, parents continue to find creative ways to not only navigate the summer months for themselves but help other families get the support they need.
Carlos, age 10, loves school. At Thornton Creek Elementary, he attends a classroom with other kids with disabilities. He takes part in physical education, art, and music classes. He’s supported by a one-on-one aide, who helps him with toileting, eating, and communicating through an iPad. As a kid with Phelan-McDermid Syndrome, he also receives occupational, physical, and speech therapy at school. In other words, Carlos is busy, and he likes it that way.
During summer break, without his school’s support and stimulation, Carlos struggles with boredom, sometimes growing too frustrated even to pick a show he wants to watch. He adores running, moving, and being outside, and his mother, Amy Moses-Lagos, would love to sign him up for camps where he can hike, bike, and swim. Frustratingly, options are limited.
Even programs specifically designed for kids with disabilities, such as those through Outdoors for All or Seattle Parks and Recreation, require independent toileting—a barrier for kids who need support or use diapers.
When Moses-Lagos is lucky enough to enroll her son in a program, there is almost always a caveat that he be provided one-on-one support. Moses-Lagos often accompanies him herself.
Camps, school, and childcare are good for Carlos and the whole family. Moses-Lagos says the support “helps my husband and I recharge enough to have the energy to enjoy being with our child, so that we’re not just stressed and tired.”
To help other families access summer support for their children, Moses-Lagos worked with two other Thornton Creek parents, Tiffany Garrick and Andrea Martin, to put together an online activity fair last February specifically for families with neurodiverse and/or disabled children.
Garrick, who co-chairs the PTA’s Special Education Committee at Thornton Creek with Moses-Lagos, created a slideshow with information from seven different organizations that she willingly shares with parents.
Catching at fish during C.A.S.T for Kids fishing events. Photo courtesy C.A.S.T for Kids Foundation
Family needs differ
Qualifying families may use Washington State’s Developmental Disabilities Administration (DDA) funds to cover summer camp fees. However, every family has different priorities.
“In my family, I have three children,” says May Wang. “My second child has autism, and my third child is disabled. So, I try to find activities where my two younger kids can participate. But enrolling in camps isn’t practical for us, because the fees are too high.”
Charles, 7, is her youngest. He uses a wheelchair, a gastrointestinal tube for feeding, and an eye gaze device to communicate. Wang uses most of their DDA benefits to pay for an aide to keep him safe at night when medical issues arise, which means there’s not enough extra for camp.
In fact, the only summer programs that Charles has ever attended with his brother have been half-day camps in Sammamish through Love Me Love Us. The camps are free and they provide volunteers to accompany Charles one-on-one. At a sports camp, he might not be able to play, but his face lights up with smiles while watching from his wheelchair.
Supporting the full family
Love Me Love Us seeks to support the entire family, so in addition to offering parenting workshops, their camps include a coffee lounge where parents can relax and connect with others whose children have special needs.
Hsia, the organization’s founder, has a son with Down Syndrome. She started the program by providing art classes to children with special needs at a local church. Through year-round fundraising and a roster of volunteers, the organization now provides music, arts, and sports camps, plus tutoring and parenting workshops.
For Hsia, the programs are about more than just summer care.
“Our idea is having a community to contribute to those with special needs is the realization of social justice.”
Read more:
Seattle PlayGarden: A magical place for kids with disabilities
Wonderland’s Early Support Program helps kids meet developmental milestones
PCC quiet shopping hour for children with autism or sensory disorders
Parent review: ‘Getting to Results: A Guide to Special Education in Seattle Public Schools’
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