Book Web site: http://www.lanari.net/, click on Walk with Me. Link to order book, see synopsis and donate the book to new parents, physicians' offices and hospitals. Click on "Family and Friends" to see sibling photo gallery.
Unique challenges affect siblings caring for disabled
Appleton conference offers way to share stories
By Kathy Walsh Nufer • Post-Crescent staff writer • April 10, 2009
When Kristin Lanari's sister Lauren was born with Down syndrome, there was not much in the way of helpful resources for parents, much less siblings of people with disabilities.
Lanari, now 29, was 10 at the time, and remembers feeling at a loss for support and information. No group like the Fox Valley Sibling Support Network existed for her then.
"As siblings you are left hanging," she said. "You don't understand how it's going to impact your life."
Lanari, who now is standby guardian for 19-year-old Lauren, has learned a lot since then, and decided to share her hard-won knowledge by writing "Walk With Me," which has just been released.
"I wanted to create an educational book to let siblings know they are not alone and can live wonderful, full lives and still have a relationship with their brother or sister, regardless of their disabilities," she said.
Lanari will discuss the book, which features 31 stories by siblings from 20 Fox Cities families, during the 4th Annual Wisconsin Adult Sibling Conference April 23 at the Radisson Paper Valley Hotel in Appleton.
In four years of focusing on the life-long bond adult siblings have with their brother or sister with special needs, the conference has become a key networking and learning resource for families, said Harriet Redman, executive director of the Fox Valley Sibling Support Network.
"I network with adult siblings throughout the country, and siblings are more and more concerned about their vulnerable brothers and sisters, especially as they see their parents age and state and county budgets shrink," Redman said.
"Even siblings in their 20s and 30s are looking for information and connections that can help in addressing the issues of housing, care, jobs, legal and financial issues and social integration for their brothers and sisters."
Lanari will talk about what it was like growing up with Lauren, whom she describes as a "total ham," and their relationship including the joys and the heartache.
"It's not always easy. My brother and I were both ridiculed for having a sister with a disability, and someone in high school told me my sister was punishment from God for something my family had done. It's not a complete cakewalk, but so much happens that's wonderful you forget the bad stuff."
Award-winning author and filmmaker Garth Stein, noon keynote speaker, will talk about his relationship with his sister, Corey, before and after her brain surgery to deal with her epilepsy.
Stein, who grew up in Seattle, said a common theme in his novels is "connectivity and acknowledging it. Everything we do affects everyone around us. Sometimes we try to deny that."
Having a sibling with a disability does change the family dynamic, he said, noting his first-hand knowledge, but it is no reason to feel sorry for oneself.
"Sometimes we get caught up in the negative aspect and blame others for our misfortune, rather than stand up and say this is what it is, now how do I move forward and take it as a life lesson and learn from it," he said.
Paula Hoglund, of Appleton, shared her story about her brother Johnny, 50, in "Walk with Me."
She has attended past sibling conferences and this year is going with her mother and sister.
"I think it's vitally important for any sibling to attend," Hoglund said.
When Johnny, who has Down syndrome, was born in 1958, she said, "It was our understanding he would not live beyond his 20s. We never thought we were going to grow old with him and play a role in taking care of him."
Hoglund, 57, said the initial discussion with her mother about Johnny's future was difficult, in part because her mother, now 85, had been such a trailblazer in making the decision to raise him at home rather than send him to an institution.
She also worked to increase opportunities for him and other people with disabilities.
In 2004, when she was diagnosed with cancer, his siblings took on more of a helping role.
Today, Johnny lives and thrives in a group home and his mom, who is in remission, remains his legal guardian but has taken all the legal steps for transferring that guardianship when necessary.
That's a relief to everyone, said Hoglund, who calls her mother's health scare a "blessing in disguise" because it was a much-needed dose of reality to her and her siblings.
Now they have a good foundation of knowledge to work from in caring for Johnny, she said, but their work is not over by any means.
"As Johnny ages, we are aging as well. We have to continue the conversation," she said.
Kathy Walsh Nufer: 920-993-1000, ext. 290, or knufer@postcrescent.com
This article can be found here:http://www.postcrescent.com/article/20090410/APC0101/904100457/1004&located=RSS
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