As disabled siblings and their parents age, brothers and sisters take on added responsibilities.
Julia Truby, 17, left, held the hand of her sister, Michelle Long, 23, at Camp Willson in Bellefontaine, Ohio. They were participating in Ohio SIBS, an organization for adult siblings of people with developmental disabilities and their families.
Growing up with a severely disabled brother, Abby Brown felt less like a sister and more like a “third parent.” As a child, Brown mourned the normal things she couldn’t do, such as take family vacations or go to the mall, without her brother having a seizure while they were there.
As an adult, she nervously anticipates a time when she’ll be in charge of his care.
“Where will he live when my parents are unable to take care of him?” wonders Brown, 21, a student at Nipissing University in North Bay, Ontario. “How will I manage taking care of aging parents, a disabled brother and children of my own? Will I ever find a partner who is willing to take on the responsibility of caring for my sibling with me?”
Brown’s concerns are emblematic of the complex, lifelong and generally unsung relationships between disabled people and their siblings, who often log more years than anyone supporting their special-needs brothers and sisters without getting much support of their own.
“I find myself frequently in the ludicrous position of having to remind my friends, my colleagues and people who worship at the altar of family-centered services that siblings are part of the family,” said Don Meyer, director of the Seattle-based Sibling Support Project (siblingsupport.org) and creator of Sibshops, workshops that bring together the siblings of special-needs kids for recreational activities and peer support.
On his Facebook group Sibnet, an adult sibling support site with 1,300 members, Meyer is struck by how common it is for 40-year-olds to proclaim it’s their first time meeting others who grew up with developmentally disabled siblings.
A sibling’s need for support begins early, Meyer said, as growing up alongside a disabled child forges complicated feelings, from embarrassment to resentment to many forms of guilt. Some siblings feel pressure to be high achievers to balance the scale. Many yearn for the friendship of a “normal” sibling relationship.
The experience has its benefits too: Siblings of special-needs kids tend to develop early maturity and increased patience, diplomacy, tolerance and acceptance of differences, Meyer said. Many pursue helping professions, where they serve as powerful advocates for marginalized populations.
A long-lasting connection
As parent caregivers get older, a sibling’s role takes on added importance, and underscores the value of nurturing the siblings’ relationship from childhood onward. About 75 percent of the 4.6 million developmentally and intellectually disabled Americans live with their families.
“If we affirm and validate their contributions as they grow up, we increase the chances that they will elect to remain lovingly involved in their [disabled siblings’] lives,” Meyer said.
Brown, who is studying to be a special-education teacher, said the empathy and responsibility learned growing up alongside a disabled sibling “is a gift our siblings gave to us.” That doesn’t mean it has been easy.
Margaret Dickey, 32, a social worker living in South Bend, Ind., said “it’s a little scary” to imagine a time when she eventually may have to care for her two autistic younger brothers. She’s still trying to unravel the emotional consequences of their childhood together.
On the positive side, she learned to be flexible and roll with the punches during any number of unpredictable moments. But there were also dark times when a brother would lash out violently against himself or the family. Wanting to be strong for her parents, Dickey felt there was nowhere to direct her anger or sadness, so she kept it in, which sometimes felt like she was wearing a mask. In adulthood it continues to be difficult for her to set boundaries or identify and express her emotions, she said.
Dickey also said going to a counselor, or having someone validate or de-stigmatize her feelings, might have been helpful.
While most research has shown no negative long-term consequences of growing up with a special-needs sibling, there is a slight increased risk of depression and anxiety when the sibling has behavioral problems, said Julie Lounds Taylor, assistant professor of pediatrics and special education at Vanderbilt University.
A difficult test
One of the challenges many siblings face when the time comes for them to assume responsibility for their disabled brother or sister, is that they are thrown into it in crisis mode — such as when a parent’s health suddenly declines — and are completely unprepared to deal with the day-to-day logistics of their sibling’s condition.
“I am surprised that a lot of the information you would expect to flow down from parents to siblings, doesn’t flow down,” said Katie Arnold, executive director of the Sibling Leadership Network (siblingleadership.org), a national nonprofit that advocates for the interests of siblings through policy and peer support groups.
It helps if families start a dialogue early to get everyone on the same page about future caregiving plans, from special-needs trusts to medication schedules to guardianship decisions, Arnold said. Many parents are reluctant to have that conversation because they don’t want to burden the siblings with such worries, but often it relieves worry among the “ultimate sandwich generation” anxious about juggling their own kids, aging parents and a disabled sibling.
HOW PARENTS CAN HELP
What can parents of special-needs kids do to nurture their typically developing siblings? Vanderbilt University Prof. Julie Lounds Taylor offered some advice.
• Get them involved in Sibshops or other sibling support groups where they can spend time with other kids who have had similar experiences. There are 400 Sibshops in eight countries. (Go to siblingsupport.org.)
• Find ways to mitigate stress in the household generally, such as practicing mindfulness.
• Spend one-on-one time with the siblings doing things that have nothing to do with the disabled child.
• Have ongoing conversations at different life stages about how involved the sibling wants to be in the caretaking of the disabled person.