Siblings Often Grapple With Their Role as ‘Parents’ of Disabled

Some of Dorothy Traver’s childhood memories involve her and her sister, Jeanne Harrigan, doing typical kids’ stuff, like watching cartoons or tearing open presents on Christmas morning.

Plenty of other recollections, however, involve Dorothy playing a more maternal role with Jeanne, who’s just 11 months her junior. Dorothy remembers, for instance, helping Jeanne get dressed or guiding her across the street.

Today at age 52, Traver, who lives in Wheaton, Ill., a Chicago suburb, still struggles between a maternal role and one as a sibling--an equal--with Harrigan, who was born with mental and physical disabilities.

Indeed, in families in which a child has special needs, siblings grow up with a set of experiences unique from those shared between healthy brothers and sisters. And as they age into adulthood, the healthy sibling must often assume the difficult duty of taking over for a parent to care for his brother or sister, especially if the disability involves mental impairments.

Because America’s aging population has brought more siblings into crucial guardian roles, and because American culture is increasingly tolerant and accepting of disability, efforts to help special-needs individuals are widening to include the struggles of healthy siblings.

“For the past 10 years, I have concentrated on sibs. They were underserved family members who really deserve attention,” said Don Meyer, director of the Arc of the United States’ Sibling Support Project and founder of SibShops, a program with more than 200 locations nationwide to help give children an opportunity to discuss having a special-needs sibling.

Helping Kids to Deal With Range of Feelings

Meyer hopes to help kids be more comfortable with the complex range of feelings they may experience, from jealously that their sibling requires so much of their parents’ time to a fierce instinct to protect their brothers or sisters from harm. If, as children, healthy siblings can come to grips with the impact their special-needs brother or sister has on them, Meyer believes that as adults they’ll be ready to assume any caregiving duties that are necessary.

“If [well] siblings have a chance to meet their peers, they can meet others who understand, who really ‘get it,”’ said Meyer. “The kids will feel more appreciated for the many contributions they make [to their families and special-needs brother or sister],” he said. “We then hope that they will elect to remain lovingly involved in their siblings’ life.”

“Truthfully, there need to be more sibling support groups everywhere,” said Judith Loseff Lavin, author of “Special Kids Need Special Parents” (Berkley Books, $13.95). “What I’ve found is that there are support groups for younger children--not enough of them, but some. People can sometimes find groups through the organization that supports the individual condition that their child has. But right now, they are hard to locate. I hope that will change.”

Serving the Brothers, Sisters of the Disabled

SibShop (https://www.seattlechildrens.org/sibsupp) is probably the most widespread effort, and it serves brothers and sisters of children and teens with a physical or mental disability. The Web site lists groups across the United States for kids of various ages.

Through casual conversation over snacks or recreational games, the kids discover that their own personal concerns aren’t uncommon, said Tamara Besser, a disability specialist with the Jewish Children’s Bureau in Northbrook, Ill. “Especially with the younger kids, we play a game called ‘Dear Aunt Abby,’ whereby children pick a card with a question, and the group then discusses possible answers,” said Besser. Questions, for instance, might focus on: “What can I tell my friends when they ask me what’s wrong with my sister?” Or, “I’m afraid I might have caused my brother to be sick. Could I have done it?”

It’s not just problems that healthy siblings share; they often express an admiration for the courage or persistence shown by their brothers or sisters, said Kristina Lind, clinical coordinator for Little Friends, a nonprofit offering services to adults and children with disabilities.

The sibling program Lind runs often invites speech, occupational and physical therapists to talk to the children who are curious about what these professionals actually do to help their siblings.

Patti Bonifas, an Aurora, Ill., mother of four sons, the oldest of whom is autistic, relates that her two youngest sons, now ages 9 and 11, have participated in the Little Friends siblings group for the last two years. “My 11-year-old said that he doesn’t want to take basketball if it means he’ll miss the group--that’s how much he likes it,” said Bonifas. Finding “something special” for their healthy children is often appreciated by exhausted parents, because they worry that they pour all their time and energy into caring for their special-needs child.

“Parents are often driving their child to therapy, but the brother or sister needs special time of his own too,” said Patti Hobbs, family support specialist with Easter Seals Children’s Development Center, Rockford.

Ironically, however, families’ busy schedules have caused some sibling support groups to shut down. “We stopped our group because it was too difficult to find a day and time when enough children could come,” said Margaret Wold, a social worker with the North Suburban Special Education District. The Internet can bring siblings, both adults and children, together at time they deem convenient, said Meyer, who recommends https://www.https://sibnet.org.

Another, less obvious reason children growing up alongside special-needs siblings need emotional support is that an astounding 75% of marriages fail under the strain of raising a disabled child, said Barton Stevens, owner of Life Planning Services, a Phoenix firm providing legal and financial services for families with a disabled member.

Adults Get Advice on Serving as Guardians

Although her parents’ marriage was intact and they provided a strong, loving presence for all of their four children, Kathy Tobin of Western Springs, Ill., regrets that focused attention to siblings wasn’t available to her when she was a child.

Tobin and her sister, Kim Erickson, who has a mental disability, are now in their 40s. “I was told my sister was slow and I didn’t know how to describe Kim to my friends,” Tobin said.

Now, however, Tobin said that she does find sympathetic, knowing advice from others who identify with her adult concerns on how to be an effective guardian for her sister through meetings with other siblings of the residents of the group housing operated by the Ray Graham Foundation, a nonprofit that provides an array of services for adults and children with disabilities.

“We started a parent-guardian group, and we meet four times a year, and I know that’s my support,” said Tobin.

Although Tobin said that she and her husband enjoy having Kim be an integral part of their lives, there are occasional problems finding enough time to attend to Kim’s needs.

The two other Erickson siblings, said Tobin, live out of town. They visit as often as possible, but when they do, Tobin said she has experienced guilt if Kim seems to favor her over her siblings. “I’ve always had it in the back of my mind that I wanted to take care of Kim, but I don’t want to seem as if I’ve forced it,” said Tobin. Her other sister is planning to move closer to Illinois, and Tobin said she’s looking forward to sharing guardianship duties then.

While there’s no emotion, from guilt to pride, that’s unique to siblings of the disabled, these family members do experience familial struggles unknown to others. Traver, for example, remembers a time shortly after their mother died when she lost her patience with her sister, who was expecting Traver to assume the same pampering their mother provided her.

“She would like me to be her mom,” said Traver. “I remember that one time she asked me to put the brake on her wheelchair, something she could easily do herself. I had to tell her: ‘I am not your mother, I am your sister.”’