These Lessons Give Children With Chronic Illnesses a Chance to Be a Guitarist, Actor or Chef

By Julia Métraux

Christal Castro was casually browsing her Facebook feed one day in 2018 when she came across a post from a friend that stopped her in mid-scroll.

The post talked about a gala for an organization headquartered in Los Angeles called CoachArt that helps chronically ill kids. Children ages 5 to 18 could explore hobbies and skills through free classes, including painting, cooking, guitar lessons and martial arts.

To Castro – a mother to then-preteens Keagan and Brayden, both of whom have connective tissue disorders and dysautonomia, which impacts the autonomic nervous system – it seemed almost too good to be true.

She texted her friend.

“I was like, ‘Is this legit? … I’m not getting hoodwinked?’” typed Castro, who now lives in San Diego.

‘No, I was there at the gala … ” her friend wrote back. “It’s absolutely amazing.’”

Since then, Keagan and Brayden, now 18 and 16, have been dedicated CoachArt students. They initially took in-person group classes when the family lived near Los Angeles. Since then, CoachArt has expanded its offerings to include online classes and the siblings now participate in those about two to four hours a week. They’ve taken classes in guitar, acting, cooking and even coding.

Participating in extracurricular activities is hugely beneficial for children’s wellbeing, regardless of whether they have a chronic illness. A September 2023 study published in thejournalAcademic Pediatrics found that participating in extracurriculars lowers a child’s risk of having depression and anxiety, and also is associated with better mental health for their caregivers. Young people with chronic health conditions may need accommodations to participate in activities, such as more breaks to reduce hand pain if they are learning to play an instrument or different ingredients if they are taking a cooking class and have food allergies. CoachArt classes are mindful of this.

CoachArt began in 2001 with in-person events in the Los Angeles area, like an animation class in an L.A. coworking space. About a decade later, they expanded to the Bay Area, also hosting a soccer club at a field in Oakland. The organization began experimenting with online classes before the COVID-19 pandemic because an art teacher volunteer had moved to Spain for a few months and wanted to keep working with CoachArt students. Throughout early parts of the pandemic, the organization built a robust selection of online classes and individual tutoring options and was able to scale up, creating an app to help automate the scheduling process, said Molly Dirr, CoachArt’s associate executive director.

“We could now match a volunteer in New York with a student in Oklahoma or anywhere else around the U.S.,” Dirr said. “This gives us this incredibly scalable model, which is still really effective and impactful.”

In 2022, CoachArt went nationwide, allowing both participants and volunteer teachers to join from around the United States. Some in-person group sessions have resumed in Los Angeles and San Francisco. In other states, participants can opt to meet their coach in-person if they are nearby – or continue to have their lessons online.

To qualify for CoachArt, kids need to have a chronic physical illness, such as diabetes, autoimmune disorders or childhood cancer. Coaches are volunteers and must undergo a background check. They can dedicate an hour or more a week to teaching a child or a group of children a new skill. And coaches can benefit from the interaction too. For instance, one volunteer Michael, an ESPN employee, taught a class about Fantasy Football, but ended up learning about building computers from a student.

Dirr also said she’s heard from coaches who have brushed up on an old hobby or skill so they could teach it to someone else, like playing the violin. “This idea of reconnecting with something that brought them so much joy or transformation as a child can be sort of an added fun benefit for a lot of our volunteers,” she said.

For Brayden and Keagan, participating in CoachArt has allowed them to hone skills they are passionate about. Keagan takes guitar lessons and the favorite song he’s learned is Kilby Girl by the Backstreet Lovers. “I’m learning the solo part right now,” he said. He even performed the guitar at CoachArt’s gala this past year. Brayden enjoyed acting classes, particularly improv. “It was really fun,” he said.

Some weeks living with chronic illnesses can be harder than others due to symptom flare-ups. During these periods, Brayden and Keagan can still participate in CoachArt, but in a less demanding way, Castro said.

“When they’re not feeling well, they’ll sign up for a gaming coach, and they just play games,” she said.

With ongoing infectious diseases sometimes canceling in-person events, Brayden said having CoachArt available online helps with normalcy and “keeping a consistent schedule.”

Children and teens with chronic health conditions need ways to take care of their mental health and have fun just like everyone else, said Briana Mills, a Los Angeles-based therapist who lives with muscular dystrophy.

Mills said that some young people with disabilities and chronic illnesses mistakenly conclude that “they’re a burden on their families or that they won’t amount to much,” due to discriminatory attitudes in society and even within their own families. This is often unintentional, but harmful.A 2019 Rehabilitation Psychology study found that many family members with a disabled relative harbor some anti-disability prejudices but don’t realize it.

It doesn’t have to be that way. Mills believes that finding online communities or activities for chronically ill and disabled kids to engage in can be life-changing, especially for people continuing to take precautions against Covid.

In addition to providing its classes for free, CoachArt tries to remove other financial barriers, such as by providing art supplies or instruments for participants “regardless of if this becomes a lifelong passion, or if it’s something they just do for a few weeks or a few months,” Dirr said. This is important, she explained, because the cost of a chronic illness can be incredibly expensive for families, including the price of medications or because a parent sometimes must leave a job to become a full-time caregiver.

“Removing accessibility obstacles can create more equitable social experiences,” Mills said.

This article was supported by Solutions Journalism Network’s HEAL fellowship.

This article first appeared on California Health Report and is republished here under a Creative Commons license.

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Previously Published on calhealthreport.org with Creative Commons License

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