When asked about life with their siblings, those with a brother or a sister with a disability are usually more than willing to talk. But they're not always sure why they or their brothers and sisters are such a big deal.
So what's your sister like at home? they are asked.
"I don't know. We play games."
Is there anything that makes life with your brother particularly interesting?
"I suppose, but nothing off the top of my head, really."
Don't you ever get tired of chasing your baby sister around?
"No, why would I? She's our sister."
They're not particularly notable or quotable answers, but they are the most telling.
It's not often that "I don't know" or "not really" is so profound, but what these words say is clear: To have a brother or sister with a disability is, simply put, to have a brother or sister.
"Sometimes my mom says Baylee is my younger sister, but she's really the older one," Colton Whetstone says.
Colton is 8. Baylee's 10, and she has Cornelia de Lange syndrome, a rare congenital syndrome that causes mild to moderate mental retardation and prominent physical features, including small stature, thin, often joined eyebrows and downturned lips.
But Colton doesn't really mention any of that. Instead, he talks about seeing his sister at school, playing with her at home on the trampoline and chasing her around when she sporadically runs off.
"She can be pretty strong, so sometimes we really have to grab her," older brother Lukas, 13, says.
Baylee doesn't answer any questions.
"She doesn't talk much," Lukas explains. "Well, she can say some words.
"Baylee, say 'baby'" — the name of the doll Baylee's clutching. "Say ‘baby.'"
"Baby," she replies.
The three have sat still long enough. Baylee starts running, and her brothers follow in pursuit.
"They chase after her a lot, because they're a lot faster than I am," mother Christy Whetstone says. "I can't be around all the time; they have to be my set of ears and eyes."
More than 6 million Americans live with siblings who have disabilities, according to the disability advocacy group ARC of the United States.
And though they might not believe their situation is anything special, the evidence proves otherwise.
When it comes to the psychology and emotional effects of living with disabilities, Don Meyer is often cited as the expert by those in the disability community.
He's the author of numerous books for and about siblings, and he is the creator of the Sibling Support Project and Sibshops, workshops in which siblings can discuss issues with other siblings.
"No one will spend more time with that family member with a disability than brothers and sisters," he said in a phone interview from Seattle. "They're going to be in each other's lives longer than anybody will, including parents."
Meyer said siblings often encounter a number of issues growing up, including embarrassment of their brother or sister, isolation, resentment and pressure to achieve, among others.
But they're also prone to maturity, social competence, tolerance and appreciation for others' situations.
"They learn at an early age that the world does not revolve around them," he said.
They're also likely to go into what Meyer called "helping professions," like social services, education and health.
"Why they do that is a matter of debate; obviously there's a lot of factors that play into that," he said. "But it's certainly a language they grew up speaking."
Deb Safarik believes it. She has three adult daughters and a 13-year-old son, Paul, with Down syndrome. One of her daughters, Jenny, is now a teacher.
"I think it's been a positive thing for them," Safarik said. "I think it's made them more caring people. It also makes them stand up. When they hear people who use the word 'retarded,' they say 'Excuse me?'
"They wouldn't have been like that if they hadn't had a brother with Down syndrome. I think they might have been more stuck-up girls."
Of course, life with a brother or sister who has a disability isn't always a "blessing" and a "joy."
Like any other sibling, there are the occasional fights with each other or with mom and dad.
And it's sometimes hard to ignore the fact that one kid in the family might need a little more attention than the others.
"Over the years, I've just learned that my brother and sister are different and I just have to get used to it," said April Fletcher, 15, of Kearney. She has a brother, Brandon, 20, with autism and a sister, Holly, 16, with bipolar disorder.
In 2005, she spoke at the Midwest Symposium for Leadership in Behavioral Disorders in Kansas City, explaining her experiences with her siblings, their intolerant teachers and the classmates who liked to mock her family members.
She detailed Brandon's violent outbursts of frustration at school, her classmate's harsh teasing and even her parents’ exhaustion in trying to help their children along.
But she also talked about how she learned to cope with her feelings and helped her siblings, teachers and classmates learn more about each other.
"I keep in mind it's just another person in the family," she said. "It doesn't really matter what they have. It's my brother and sister and nothing's going to change that."
It used to be nothing was really expected of people with disabilities, but in today’s society, parents and siblings often expect their brothers and sisters to be independent, functioning members of society as they reach adulthood.
Laura Anania, 27, saw distinct differences between life as a child and an adult with her brother Robert Kucirek, who has a moderate, undiagnosed mental handicap.
“As Robert was growing up, I had to deal a lot with the acceptance of him having a disability, and explaining it to my friends and all that,” she said. “Now I don’t have to do that as much.”
Nevertheless, Robert still needs family support, Anania said, and as he got older, Anania and her three other brothers had to talk about who was going to take care of Robert, where he would live and work and how he would stay involved in activities.
“He might be 22, but he still needs someone to watch him, and he will for the rest of his life,” she said. “Robert’s cognitive level is still at about the 12- to 13-year-old level. There’s still the social and sexual issues that need to be addressed, and helping him through those type of situations can be difficult.”
Of all the questions, concerns and issues siblings have to deal with, perhaps the most urgent is figuring out what life will be like when everyone grows up.
Parents won’t be around for ever, and siblings need to determine what involvement they’ll have in the life of their brother or sister with a disability when they’re on their own.
“We worry about who’s going to watch him,” Anania said. “He can stay by himself for short periods of time, but I’m still worrying about him then.”
Fortunately, Kucirek’s three older siblings will offer him many choices on where to go.
“With the three of us, there’s the option to live with one of the three when our parents pass away, if that’s what he chooses to do,” Anania said.
Anania also thinks growing up with her brother prepared her for parenthood. In fact, she got a special lesson, which well prepared her for her son Jake, 4, who, at 22 months, was diagnosed with pervasive development disorder.
“Being in the disability community all my life, I knew who to talk to and what resources were out there, where if I hadn’t been, I could see how it would be difficult not knowing who to turn to or where to go,” she said.
She also hopes her experiences as both a sibling and a parent will help her relate to her other kids as they grow up with Jake. Maybe she’ll be better able to show them their brother is just another member of the family.
“I know how that feels, and as my 2-year-old grows up, maybe I can help him through that, too.”
Reach Joel Gehringer at 473-7254 or firstname.lastname@example.org.
Where to learn more
Siblings of people with disabilities shouldn’t have to be alone in their experiences. Locally, the Arc of Lincoln/Lancaster County offers Sibshops three times a year for siblings ages 8-13. Modeled after Don Meyer’s workshops, the Sibshops offer siblings a safe environment to discuss their concerns with other siblings.
Arc officials said their next Sibshop will be in October. For more information, contact the Arc at 421-8866.