The Dickey family

From left, Johnny Dickey, 21, his sister Margaret Dickey, 32, and her brother Patrick Dickey, 27, pose for a photograph at their parents home March 21, 2013, in Mishawaka, Ind. Margaret has helped look after her brothers, both of whom are autistic, since she was in high school. " (Armando L. Sanchez, Chicago Tribune / March 20, 2013)

Dickey said going to a counselor, or having someone validate or destigmatize her feelings, might have been helpful.

Handling the stress

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.

One of the unique 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 (, 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 care-giving 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.

An evidence-based curriculum called "The Future is Now: A Future Planning Training Curriculum for Families and Their Adult Relatives with Developmental Disabilities," developed by The Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago, provides a road map for having the conversations.

While not all siblings want to participate in the care of their special needs brother or sister, their involvement can be crucial to the family's well-being. Siblings often bring a fresh, peer-based perspective, less protective than that of parents, that encourages greater independence for the disabled sibling.

Tamar Heller, director of the Institute on Disability and Human Development at the University of Illinois at Chicago and a co-founder of the Sibling Leadership Network, said her younger sister, who has cerebral palsy, had been languishing in a nursing home with diabetes and a MRSA infection when Heller had her transferred to a group home where, through support and motivation, she improved significantly. Heller said her parents told her the outcome "gave them 10 more years of life."

It can be good for the sibling relationship, too.

After their mother passed away, Renee Silberman, 54, found her intellectually disabled older sister, Estella, an adult day program at a Jewish community center, where she works at a sandwich cafe and paints artwork that she sells at the center's fairs.

Though she wishes they could have a more equal sisterly relationship, Silberman, who lives in Lincolnwood, Ill., is grateful for the opportunity to get to know her sister in ways she hadn't as a child, including glimpses of acute emotional intelligence.

"I think I saved up all my noticing for now," Silberman said.

How parents can help

What can parents of special needs kids do to nurture their typically developing siblings? Vanderbilt University professor 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 around the world. (Go to

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.

— A.E.R.