Siblings of disabled share their stories

ST. LOUIS — When 13-year-old girls start sharing their troubles at a slumber party, there’s bound to be talk about annoying little brothers and sisters.

But when Lauren Jacob chimed in at a recent party about her pet peeve — her brother’s tendency to smack people — she got a less sympathetic reaction from her friends.

“Oh, but he’s so cute.”

Or, “He can’t help it.”

Frustrating. People are always rushing to defend 9-year-old Benjamin. It can seem that way sometimes when you have a brother who was born without eyes and is also autistic.

Siblings of children with disabilities grow up on fast-forward. They quickly learn lessons in childhood about tolerance, patience, self-sacrifice and responsibility. But because the focus is so often centered on the child with special needs, their experiences may stay in the background.

A group of siblings in St. Louis, including Lisa and her older sister Kathryn, decided they needed to share their personal stories to connect with others in similar situations. They’ve published a book on what it’s like to grow up in a family when a sibling has a physical or mental disability.

It was published last spring by the Delta Gamma Center, a resource center for children who are blind or visually impaired and their families. The center runs two sibling support groups, and the older group approached the director about the book idea.

Executive director Debbie Naucke remembers their plea: “We have a lot to say about being brothers and sisters. We feel we don’t have a voice.”

In the academic research and professional view, siblings were pretty much ignored until the mid- to late ‘70s, according to Sandra L. Harris, a professor of applied and professional psychology at Rutgers University. She is the director of the Douglass Developmental Disabilities Center at the university and author of “Siblings of Children with Autism: A Guide for Families.” Increased openness about disabilities and better communication among families has improved siblings’ chances of having a real relationship with their disabled brother or sister, Harris said. Still, there are potential pitfalls — a childhood overburdened with worry, sadness, guilt or responsibility.

Kathryn Jacob, 15, casually sticks out her leg to block Ben from getting too close to a visitor at their home in south St. Louis County. He easily climbs into her lap despite the fact that, at 9, he barely fits. She pats his stomach and jokes around with him while he hangs upside down from her legs.

“What are those?” she asks, wiggling her toes. “What are they?” she coaxes him.

It’s the kind of games a mom plays with her toddler, and Kathryn is completely comfortable in the role. She was 6 when Ben was born and knew life had changed.

“When you come home and see your dad cry, you know something is wrong,” she said.

Her parents, Lisa and Greg Jacob, both 42, readily admit that family life revolves around Ben’s routines, moods and needs. His sisters can be a big help.

Unlike a baby sitter, Kathryn knows that when Ben says “OK,” it might mean “no.” She’s changed her share of his diapers until he learned to use the toilet at age 5. Even now, she will help dress him, bathe him and make him his favorite sandwich (peanut butter and jelly).

And she can get protective if people stare at her younger brother in public.

She usually says: “If you have a question, go ahead and ask. It’s OK.” But once she got really irritated and said, “Hasn’t your mom ever taught you not to stare?”

She can explain the problem with his eyes to anyone: “He’s got anophthalmia. That means he was born without any eyes. He wears prosthetics, like a prosthetic leg.”

And she can sum up his autism in a sentence: “He doesn’t interact socially.”

Growing up, she quickly realized that the world didn’t revolve around her. Still, there were moments when that was hard to take. Like in fourth grade when she had a big part in a special Mass at her Catholic school. Her parents promised to be there but couldn’t make it because of a school meeting about Ben.

“You’re just kind of like, ‘What about me?’ ” she said.

Her parents realize those emotions are just as normal and healthy as the loving moments. Unlike teenagers who can be easily embarrassed by their families, the Jacob sisters have a much higher threshold. They can laugh at Ben’s quirks, such as his tendency to take out his fake eye at inopportune moments.

Lauren describes it as “that dreaded clink on the ground.”

“It might be a little baby’s toy dropping, but we’re always worried it might be Ben’s eye.”

Once, they heard the clink at church. Ben had popped out his eye during the sermon, and it rolled under a pew. Luckily, one of them grabbed it.

Kathryn remembers an incident years ago that the school nurse wrote about in Ben’s journal. He wasn’t feeling well and took out his eye and threw it in the hallway. It hit another student in the head.

The student looked down and said, “Did that kid just throw his eye at me?” Kathryn tells the story with a chuckle. There are times she wishes Ben could see her face. Lauren sometimes wishes he could have friends and express his emotions. She thinks it would be really nice to “positively know” that he loved her.

But they both say they wouldn’t change him if they could.

The way siblings adjust to their brother or sister with special needs has a lot to do with how their parents respond to their range of feelings, Naucke said.

The siblings’ book covers moments of pride and joy, along with guilt and resentment.

“Society has changed in terms of our reaction to people with disabilities,” she explained. More families care for their special needs child at home, and many more community resources are available.

Earlier studies on sibling adjustment found that the oldest female sibling was most at risk for assuming a caretaking role at the expense of her own childhood.

Don Meyer, who began spreading the sibling support group concept out of Seattle in the mid-to late ‘90s, says there are nearly 200 Sibshops in about eight countries, and most major cities offer some type of program.

While most sibling relationships tend to include some ambivalence, that feeling is intensified when one of the siblings has a disability, he said.

“The highs are higher, and the lows are lower,” he said. The siblings may be “marvelously tolerant, powerful advocates and incredibly mature for their age,” he explained. But they may also experience moments of resentment, pressure to be the perfect child, isolation and embarrassment.

Meyer encourages professionals in the field to take siblings into account since they are likely to be in the disabled child’s life longer than any other person.

The Jacob sisters, for instance, remember talking about who would take care of Ben if something happened to their parents when they were 6 and 8 years old. They still agree that they would drop their jobs, move across the country and do whatever was needed.

“Me and my sister would take care of him,” Lauren said. “I feel like he is our responsibility.”