FASlink Fetal Alcohol Disorders Society
Shadow siblings
Shadow siblings
Gail Rosenblum, Star Tribune

Children growing up with siblings who have special needs share how those bonds sometimes scar, but more often enrich their lives.

They grow up fast, as keen observers of siblings who may never grow up at all. They learn how to stuff their needs, choose friends carefully and steel themselves against the inevitable comments from observers:

"What's wrong with your sister?"

"Why is your brother so ugly?"

But living with a sibling with special needs grants them gifts as well. Maturity. Compassion. Humor. Selflessness. Gratitude in small miracles such as the ability to throw a ball, use the bathroom by themselves, plan for college.

Look around you. Think about the families you know. It is likely that you can easily name friends, neighbors or co-workers whose lives are defined by challenges that take your breath away. A child with cancer. A child who will never walk or who can never live alone.

But how often do any of us look past those parents and children to the "others" -- the brothers and sisters carrying the heavy, and often silent, burden of being born healthy?

"They are old for their ages," said John Guthmann, 51, of St. Paul. "They" are John and Teresa Guthmann's twins, Abby and Andy, precocious, delightful and almost 14. Their 17-year-old brother, Alex, was born with a severe genetic disorder that reduces him to crawling, making unintelligible noises and wearing a diaper. Abby and Andy describe their brother fondly as "a giant toddler."

For as long as they can remember, the twins have been Alex's best friends and defenders. "I sometimes get really mad when we're out and people stare at him," said Andy, who, with Abby, is an eighth-grader at Capitol Hill Magnet. "A girl asked me, 'Why is he so stupid?' I just try to get in the way if they're staring."

Abby sometimes tries to explain Alex's condition. Other times, she pulls out her mischievous sense of humor:

"Once, a little girl came up and asked 'What's wrong with Alex?' I told her: 'Mosquito bite.' She ran screaming to her mom."

The twins have lived this way for so long that they don't realize how unusual their "normal" is. When friends come over, and they have many friends, it is Teresa's job to keep Alex quiet (his yelling and clicking can get quite loud). The twins pull toys out of Alex's mouth so he won't choke, avoid his playful, but potentially dangerous body slams, push him in his stroller and guard their food against their brother's big appetite and quick reach. And, of course, they have to do chores -- unlike Alex, who attends Bridge View, a public school for special-needs children in St. Paul.

Parents balance grief, guilt, pride

Mostly, though, Abby and Andy are learning to navigate a world in which they long ago surpassed the big brother who was supposed to lead the way.

For many parents, this triggers deep sadness, but also tremendous pride. Many were eager to talk about their "other" children, although most parents began with unsolicited mea culpas.

Barb Ziemke, a parent advocate and trainer at Bloomington-based PACER Center, which offers resources, support and education to families with special-needs children, wonders if she expected too much of her daughter, Kristin, now 20. Kristin grew up in the shadow of younger brother Brandon, 17, who was born with a neurological impairment.

"Looking back, I think there was more going on than I saw," Ziemke said. "The initial prognosis was dire. He might not ever walk, talk or hold up his head. We were so into the process of Brandon that I think we didn't address what was going on below the surface with Kristin. The information came out sideways."

Sometimes, that information had no easy answers. Like Kristin's guilt at being healthy. Or her resentment at feeling like she always had to be good. Once she asked her mother, "Can't I be bratty like other kids?"

Virginia Richardson, PACER manager of parent training, remembers children's recitals she missed because Debbie, the oldest of her four children, was in the emergency room with seizures. When daughter Sandy, second in line, grew up, she became her sister's greatest supporter -- but it was not without a price.

"We were so busy taking care of Deborah's needs that we didn't talk to the others much about it," Richardson said. "Later on, I began to say, 'If this is Sandy's day, we'll make other arrangements for Deborah.' "

When Abby and Andy turned 13, their parents took them to New York for four days. It was the first family vacation without Alex.

"It was weird, but it was better without him," said Andy, who sings in the Minnesota Boychoir, plays piano and likes doing science experiments. "I've got to admit that it was easier to move around."

They ate at Tavern on the Green, saw "Lion King" on Broadway. They rode the subway. For the children, it was an exhilarating adventure. For their parents, it was a bittersweet taste of a future in which two children will fly and another will stay.

The sadness of separation

>From the moment a child's special needs are diagnosed, many parents begin to do the math. How old will they and the child be when school-based services end? How old will the child be when aging parents can no longer care for him or her? And if they cannot, who will?

"Families have an obligation to each other," Richardson said. "The message is, 'Somebody is supposed to do this. We don't abandon members of our family.' If not [daughter] Sandy," she said with a laugh, "I'd go down the list until I find somebody."

The twins, on the other hand, "will never be responsible for Alex's care," Teresa Guthmann said. John agrees.

"We don't want to disappear and they have to take over. ... They can be as involved as they want to be."

Abby, who enjoys art and tae kwon do, has already thought about it plenty. Like the wise child she is, she's keeping her options open. "I love Alex, but I don't see him as a reason to be tied down," she said. "If I want to leave, I'll leave. If I want to stay, I'll stay."

Andy is already at peace with his decision. "I just hope Alex has a nice place to stay."

Making a difference

Many sibling have already created legacies inspired by their childhoods.

Win Bennett, 18, of Long Lake, left for Brown University in Rhode Island this past September. But as a freshman in high school, he worried that Mara, the oldest of the five Bennett children, was spending too many weekends at home alone.

Mara was born with Williams syndrome, a rare genetic condition that causes medical and developmental problems. Win created Fun Times, a program bringing kids with special needs and volunteers together about once a month for Twins games, pumpkin carving, movies, bowling and other activities. The program is now run through PACER.

Callie Martin, 17, a junior at South High School in Minneapolis, might have become a political activist anyway. But growing up as the older sister of Gabriella Rose, who died in September at age 14 after being born with lissencephaly (smooth brain), certainly influenced her path.

In November, Callie delivered an antiwar speech to about 2,000 students gathered at the University of Minnesota.

"I really try to focus on social issues," Callie said. "I've grown up accepting everybody -- my sister, my parents. I really believe that everybody should be accepted for who they are."

Most children hear this lesson often. But young people like Callie and Win and Andy and Abby live it daily.

Alex "is just happy," said Andy. "He doesn't have any worries. Except at mealtime. It's Sprite. No ice."


What guides us is children's response, their joy in learning to dance, to sing, to live together. It should be a guide to the whole world. -Yehudi Menuhin