At the beginning of her career, Debra Lobato, Ph.D., was an intern in a program that provided in-home services for very young children diagnosed with special needs. While Lobato consulted the parents of children newly diagnosed with illnesses that were already wreaking havoc on the family, the same thing happened, a lot: “I’d have the other little kids jumping all over me.”
The “other little kids” were the siblings of the diagnosed child, but that wasn’t the scenario in every household. Other times she’d meet with the parents and diagnosed child privately, while the siblings peeked around corners to catch a glimpse or sound from what must’ve seemed like a secret meeting between their family and this special doctor making a house call.
“In one house the family wanted to include the [typical] brother; in the other, I was sequestered to work with the brother with special needs. And I thought to myself, these kids will understand what autism is very differently,” says Lobato.
Lobato’s contrasted experiences ignited a lifelong pursuit of providing as many services to the siblings of children in need as the children in need, themselves. She joined Rhode Island Hospital’s staff in 1984 where she ran its first siblings group. And in 1994, her first siblings group led to SibLink, her unique program – one of the only of its kind in the country – that provides a support group environment for the siblings of children with chronic illnesses or disabilities by celebrating, serving and connecting brothers and sisters of children with illnesses and disabilities.
“In the late 70s and 80s there was heightened awareness that parents are participants along with medical professionals in treating kids, so parental voices were heard much more loudly,” says Lobato, the director of psychology at Hasbro Children’s Hospital and a researcher with the Bradley Hasbro Children’s Research Center.
Soon, the next logical questions turned to parents’ “typical” children and how living with their special needs siblings would affect them. This became the heart of what SibLink does daily through group sessions, clinical service, teaching and research.
Open to all families with children with special needs, SibLink is affiliated with Rhode Island Hospital and its Hasbro Children’s Hospital, Bradley Hasbro Children’s Research Center and the Warren Alpert Medical School at Brown University. It comprises a six-week program that focuses on sibling education, peer support groups, and of course, learning through fun. Brothers and sisters are invited to join one of three age groups: four to seven years, eight to 12 years and young teens (of which Lobato says there are very few).
“With the little kids, we bring them together in one room where they learn the name of their brother or sister’s disability and help them understand that most disabilities are not contagious,” says Lobato. “We do this using show-and-tell and pictures. With [the middle group], the big issues have more to do with the disruptions with the family schedule.” Parent groups are not support groups to discuss their special needs child, but how to be the best parent possible to their typical one.
“Our hope is to bring the notion that it’s a ‘family’ issue,’ and to help explain a diagnosis so a sibling can explain [the diagnosis] and not always couch explanations in disability words,” says Lobato.
According to SibLink statistics, between four and seven million children in the United States have at least one chronic illness or disability and almost all of them have siblings with whom they often share a room, meals and obviously, parents. As much as SibLink serves children and families, it also hopes to remind practitioners to keep the typical siblings in mind when counseling families with special needs kids.
Since 1994, SibLink has helped more than 200 siblings in Rhode Island, though the program is open to all families.