• Supporting Illinois Brothers and Sisters: www.sibsnetwork.org, (708) 989-3619, hosts Sibshops, Sibshop facilitator training, sibling future planning and offers AdultSibsNet, a listserv where adult siblings can share ideas. The site is full of resources for siblings.
• Sibling Support Project: www.siblingsupport.org or (206) 297-6368, hosts local Sibshops for sisters and brothers of children with special health and developmental needs.
Francine Eberhard wishes she just had one more chance to talk with her mom before cancer stole her away. Instead, she's left wondering if she's doing exactly what mom wanted when it comes to taking care of her 35-year-old baby sister, Julianne, who has Down syndrome.
"But we didn't," she says, tears choking her even now.
As in many families with children with special needs, it was simply understood that Eberhard would take care of Julianne should something ever happen to their parents. But experts say parents should tread a light line with such expectations for both their child with special needs and the siblings who love them dearly.
And too many times, planning is put off until it's too late, experts say.
"Nobody wants to talk about when your parents are going to die or what's going to happen to your sister. But you have to and you have to plan those things so that if your parent does die before you expect it, you are not so confused and make such heart-wrenching decisions," Eberhard says.
Moving Julianne into her Darien home with the support of her husband Victor and two small kids, Allison, 7, and Ethan, 4, was a big step. It required a $150,000 home addition, uprooting Julianne from the routine she knew and learning to navigate a new world filled with special needs paperwork. Even so, Eberhard fretted her decisions until a relative told her how proud she was.
"And she said, your mom has been training you from the minute Juli was born to take over. It really hit home."
In Eberhard's family, there were those uncomfortable conversations about death, but she expected her parents to outlive Julianne. Then her mom was diagnosed with cancer and died a mere four weeks later.
"It's not easy and it's not comfortable and it's difficult, but I think you have to have those conversations and you have to have a plan," she says.
Tara Kosieniak of Lockport says her parents, however, haven't done any planning with her for her brother Nicholas' future. Nicholas, 31, still lives with their dad, but she knows one day his care will be her responsibility.
"... Without me really knowing what they want me to do, they've kind of put me in a terrible situation," she says.
"I think the most important thing is being able to come together as a family and hash out whatever needs to be hashed out and really set aside fears and expectations," she says. Part of her mission is to get the word out that siblings want to be included in discussions about the future.
A sister's tips for parents
Someone had to take care of Jeffrey when, at just 15, his mom died. That someone turned out to be his little sister, Cindy Wilson.
"At 10, I kind of grew up quickly. I stepped into my mom's place and have taken care of Jeff since then," she says without a hint of sympathy. She says nobody planned a future for Jeffrey, 49, who has mental retardation and muscular dystrophy
"It's a hard thing, people don't realize how much work it really is," says Wilson, of Plainfield.
There's guilt: "Maybe I am not doing enough," she thinks to herself.
There are days she's wanted someone else to take care of Jeffrey and make him do the things he doesn't want to do. "Some days I feel like I'm a horrible sister."
There are financial issues: Wilson didn't know help was available so she worked hard, two or three jobs at a time, to provide for them. She married at 30 and 14 years later is still waiting for some alone time with her husband.
"Through all of it, growing up, it has made me a stronger, more responsible person. … You always hear, God'll never give you more than you can handle. It is true."
To today's parents, she offers this advice: Don't put all the responsibility on one sibling, put a financial plan in place before it's too late and make sure siblings know exactly what they are getting into when they agree to take over care.