It was during a conversation with a pediatrician that Rebekah Rocha realized how much attention her 9-year-old middle child was receiving while her two other children struggled coping with their sister’s disability.
Born with cri-du-chat syndrome, a rare genetic disorder also known as chromosome 5p minus syndrome that affects a child’s intellectual and physical development, her daughter requires frequent doctor visits and behavioral therapy. That puts a strain on family life, particularly for her 12-year-old son, Jerry.
He said he doesn’t talk to friends at school about the challenges of having a sibling with a disability. Nor does he like to invite friends over to his house because of his sister’s outbursts, common among young children with cri-du-chat.
“None of my friends have siblings with disabilities,” he said. “They don’t really get it.”
Hoping to provide her kids more support, Rocha reached out to Vicki Long, principal of the North County Consortium, a Windsor special education program that Rocha’s daughter attends. The consortium has launched two support groups for Sonoma County children who have siblings with disabilities.
Rocha, principal of Santa Rosa’s Cesar Chavez Language Academy, said one group will be dedicated for kids ages 7 to 9 and the other for those 10 and older. Jerry attended a similar group last year at a conference for families dealing with cri-du-chat syndrome.
“We knew what each other was going through,” he said about the group. “It was easier to get to know each other.”
Long said families often are overwhelmed trying to meet the needs of the disabled child, and those needs can overshadow those of siblings. While some siblings adapt, others struggle.
“There is always an amount of pressure put on the sibling to rise to the occasion,” she said. “I’ve witnessed children fall by the wayside, become uninvolved and quiet.”
Giving siblings an opportunity to share how they feel is important, she said, but “I don’t know that it happens very often.”
She and Rocha held their first group last week in a North County Consortium classroom on the Windsor Creek Elementary campus. Although Rocha’s two kids were the only participants, they’re optimistic the group will grow as word spreads.
The next group, for the older kids, will be held at 5:30 p.m. on Feb. 13 at Windsor Middle School.
Juno Duenas, executive director of the San Francisco-based Support for Families of Children with Disabilities, said several family resource centers throughout the Bay Area and state provide sibling groups, although it can be challenging to start and keep them going since most are run by volunteers. Nonetheless, she said, they’re needed.
“Individuals with disabilities often face many challenges. They are at higher risk for dropping out of school, entering the juvenile justice system, homelessness and abuse,” said Duenas, whose own children attended a sibling support group when they were younger.
If supported, siblings can be strong advocates for their brothers and sisters with disabilities.
“Their siblings are obviously a partner in the experience, and giving siblings a safe place to explore their experience, network with peers and find their voice can make all the difference,” she said.
Five years ago, Julie Payne-Neward launched the California Sibling Leadership Network after she said her sister was sexually assaulted at a care facility. She wanted to connect with other adults who were looking to advocate for siblings with disabilities. The all-volunteer network holds meetups throughout the state.