Life is far from ordinary for these kids

In a world where college admission is a spectator sport, a local girl is making good on Broadway and a plucky team of Little Leaguers from Coon Rapids qualified for their World Series, Allana Hayes has a simpler dream for her brother, Brett:

An ordinary life.

Brett, 16, was born with Ring 22, an extremely rare chromosomal abnormality, and it's likely no coincidence that Hayes, 20, is majoring in special education at Xavier University in Cincinnati. Growing up with Brett, she said, meant few family vacations and even fewer opportunities for something most of us take for granted: spontaneity. Someone always had to take care of him, will always have to take care of him. But anyone who thinks Hayes is complaining isn't listening. Her life as Brett's big sister has taught her patience, acceptance and faith and made her "more conscious of people's feelings."

Her own feelings, however, were largely untapped until about a year ago. That's when Adele Bergstrom, owner of A. Light Communications in Minneapolis, came across an essay her daughter, Brita, 16, had written about the word "retarded." Brita's younger brother, Carl, 14, has Down syndrome. Brita felt so angry when other teens, and even some adults, used the word in a derogatory fashion such as, "He's such a retard!" Bergstrom, who seldom had time to ask Brita how she felt growing up with Carl, became driven to do that very thing.

Bergstrom identified 20 Twin Cities teenagers and young adults willing to journal candidly about growing up in households with a sibling with special needs; she was assisted by Chris Bentley, director of the Fraser Institute, and a $15,000 grant from Sappi Fine Papers' "Ideas That Matter" program.

The result is Bergstrom's just-published handbook, "Who Asked Me: A Journal of Discovery and Sharing By and For Siblings of People with Developmental Disabilities."The goal was honesty, and they didn't sugar-coat things and pretend that everything was always just fine," said Bentley of Fraser, a nonprofit providing support services to families with special-needs.

Many teens, for example, wrote about embarrassment. "I always think, 'Oh, God, what are they thinking?' when people stare," said Brita, who will attend Perpich Center for the Arts in September.

"When I was in junior high, my sister would come with my parents to watch me play basketball," wrote Alex Barnier, 17, whose sister, Faith, has Down syndrome. "During the games, she would yell my name really loud, especially when it was quiet."

Many wrote about worries way beyond their years. "My biggest worry is the future," wrote Bridget Barnier, 18. "I worry about [Faith's] safety when she gets away from her sheltered life. Will people treat her well? Will she be OK?"I hope my brother will lead the most ordinary life he can," Hayes wrote of Brett.

Mostly, though, the siblings wrote about love, complicated though it may be. The teens, about eight of whom participated in a Fraser-sponsored panel on this topic last week in St. Paul, agreed that their lives have been enriched, not cheated, by having these siblings.

"They may get angry and they may get frustrated, but they won't let anyone else say mean things about their siblings," said Bergstrom, also the mother of Haakan, 22, a student at Hamline University.

One lovely example: "My brother," wrote Tess Hayes, 14, the younger sister of Brett and Allana, "is an inspiration not only to me, but to every individual that has the amazing chance to meet him. I just hope that I, too, might one day live life as fully as my brother does, for that is truly a gift."

Gail Rosenblum • 612-673-7350

Gail Rosenblum • grosenblum@startribune.com