Siblings Of Children With Disabilities Handle Different Set Of Pressures
Seattle Times Staff Reporter
The relays have been run, the nachos have been reduced to ruins and the art projects completed with varying degrees of success. Now eight kids, all between 8 and 13 years old, sit in a circle and tackle a daunting subject: the future.
What do you want to be doing in the year 2010? And what do you want for your brother or sister?
Rebecca Adams, a soft-spoken 13-year-old, knows. She wants to be an occupational therapist so she can work with kids like her 16-year-old brother, neurologically impaired since a childhood illness. She wants him to go to college, become a computer expert and continue to be a big part of her life.
"I used to feel bad because he got all my parents' attention," she says. "But we're very close now. It's very hard for him to make friends, but he's my best friend."
The other kids, while seeming far more ambivalent, get it. Each has a sibling with Down syndrome, autism or some other disability that sets them far apart.
On any given Saturday across the region and country, kids like these convene at so-called Sibshops to play, vent their frustrations and search for answers to their unique set of questions.
The Sibling Support Project began in Seattle and has spread to 38 other states. It is, as much as anything, an affirmation that the other kid in a family with a special-needs boy or girl deserves attention, too.
Too fun to be therapy
Sibshops are not therapy. They are too much fun for that, with at least half of the three- to four-hour sessions devoted to play and recreation. The last thing organizers want is for kids to resent their brother or sister for some boring lecture that soaks up a Saturday.
Most fundamentally, the kids aren't treated like victims. There is no pressure. No expectation. No right or wrong way to feel.
Adams has gotten so much out of it that she is volunteering to help conduct classes for younger kids. It is not unusual for kids like her, especially girls, to go into helping professions. Research suggests siblings of special-needs children often grow up to be more compassionate, tolerant and mature than their peers.
But they must first deal with a set of pressures - a sense of isolation, embarrassment, guilt, resentment, a need to be superkid. The relationship between young siblings can be confusing enough: fighting one minute, sharing secrets the next; wending through rivalries while unconsciously cementing a bond.
How do you develop a relationship with an autistic brother who seems to barely acknowledge you exist? What about the schoolyard taunts about your sister's seizures? Where do you fit in when your parents are so preoccupied with the seemingly endless therapy sessions your sibling needs? Why are they at the hospital so much? How do you handle it when your brother keeps messing up your stuff or draws stares at the mall?
And what about the future?
Many siblings - and there are millions of them - will find themselves making the tough calls when their parents age or die. They will run the gauntlet through state and federal bureaucracies, decide where their sibling will live and play a huge role in his or her quality of life.
The life span of many developmentally disabled people - those with Down syndrome, mental retardation, autism, spina bifida and cerebral palsy - has doubled in recent years.
"Just about anything you can say about the effect of a special-needs child on a parent you can extend to a sibling, and chances are the sibling will be involved longer than the parents will," says Don Meyer, founder and director of the Sibling Support Project.
Kim Lundy, a 24-year-old special-education teacher with the Bellevue School District, attended the first Sibshop in 1982. Even as a 10-year-old, she was consumed by the future, believing she could never marry because she would have to care for her sister Heather, who has Down syndrome.
Lundy, of Brier, is not only married today, but says she has a wonderful relationship with her sister. Heather, 20, lives at home with her parents and regularly goes shopping and to dinner with her big sister. She eventually wants to live on her own.
"I was able to talk about my feelings at Sibshop. Before that I never had contact with anyone in my situation," she says. "There I had contact with all these kids who understood things I don't think my parents would ever understand, things unique to siblings."
Adams' class meets once a month at the Experimental Education Unit at the University of Washington. There are other sessions for younger kids and some at Children's Hospital for children whose brother or sister faces a serious, sometimes terminal illness such as cancer or AIDS.
Cleverly spliced between the games and art projects are mini-sessions on helping kids see beyond the disability and focus on what makes their sibling not that different from any brother or sister - someone they will alternately love and want to slug.
Kids can be cruel
The discussion at Adams' class eventually turned to a small boy complaining that he's been punched while trying to defend his brother from taunts. He gets instant nods of agreement. People, especially kids, can be cruel.
He gets a number of suggestions: Ignore the taunts. Explain the disability in easy, concrete terms. Another boy looks at the floor, "I tell them, `you are just afraid of my brother because you don't understand.' "
Sibshop participants often are asked to help "Aunt Blabby," a fictitious advice columnist who fields questions from boys and girls with special-needs siblings. Because she has no experience in the field, the kids must come up with her answers.
The questions are often real:
"Sometimes I feel like the invisible man. My brother has Down syndrome. He has a lot of needs that seem to take up all my parents' time. It seems like the only time my parents pay attention to me is when I get in trouble. How do I let them know they have two kids instead of one?"
"Some kids at my school make fun of the special-education kids. I even heard them call my brother names and laugh at the things he does. What should I do?"
"I tease my other brothers and sisters, but when I tease my `special' sister, my grandma yells at me. I'm not doing it to be mean or anything - it is just teasing. Is it OK or not?"
Another exercise calls for the kids to put on moccasins and learn how the Native American proverb, "Do not judge a man until you have walked a mile in his moccasins," applies to their sibling.
Meyer, of Children's Hospital & Medical Center, has used a U.S. Department of Education grant to help start up 200 Sibshops across the country. His goal is to get siblings comparable services to those parents receive.
He has also set up an active Internet mailroom site and has co-written a plain-spoken book for kids called, "Living with a Brother or Sister with Special Needs."
"Kids have a real birthright to information," he says. "The truth almost is never as ever scary as what's rumbling around their heads."
A group of kids in a Snohomish County Sibshop didn't want to let the friendships they had made end, so they now run a quarterly newsletter called "Sib to Sib."
Funded by the Snohomish County Sibshop Coalition and the Little Red School House, Sib to Sib dispenses advice to common dilemmas, defines illnesses and disabilities, recommends books and relentlessly seeks letters, opinions and pen pals. It features a cartoon called "The Adventures of SuperSib" and a 13-year-old columnist.
Rhoda Berlin, a family counselor at the Little Red School House, advises and coordinates the newsletter, but it is produced by four teenagers, all between 13 and 14 years old. It has a subscriber list that goes coast-to-coast and also is available on the Internet.
Upbeat - and honest
As with Sibshops, the newsletter is hardly all business, with plenty of puzzles and cartoons. It pushes an upbeat tone, but lets kids say what they think. One girl wrote:
"One of the bad things about having a brother with special needs is that when people say, `I'm a retard' or `I'm mental,' everyone laughs but me and I get defensive and tell them why, and they still laugh."
It also carries items like this open letter from a 7-year-old boy to his 10-year-old autistic brother:
I love you because you are my brother. You might be different than us, but we all are different. That is why I love you."
To learn more about the Sibling Support Project, call Children's Hospital & Medical Center at 368-4911. Links to the project's Web site are on The Seattle Times' Top Stories Web site at http://www.seattletimes.com
Copyright (c) 1996 Seattle Times Company, All Rights Reserved.