My friend Harriet drives an adorable yellow Bug, and a world-changing program based on empathy and joy.
Wisconsibs, whose mission is to foster a community of support and understanding for brothers and sisters of individuals with special needs, has grown dramatically and strategically in the 20 years since Harriet founded it, shortly after the birth of her son Phillip.
She tells the story on WisconsinSibs’ excellent website:
“It was more than 20 years ago, but I remember it like it was yesterday when the doctor said that our 5-month-old son would be severely disabled. He said he would probably not walk. Maybe not talk. Not keep up with other kids. Not be ‘normal’. It wasn’t necessary for the doctor to go on to say that this would have an impact on our whole family, including his older sister.”
Harriet and her husband Rich immediately began researching and strategically planning a support system for their then three-year old daughter Christiana. A simple front-yard soccer game proved to Harriet that all that preparation was critical.
“I was rolling the ball to Phillip and he was in a walker.,” Harriet said. “Christiana would reach down and pull Phillip’s leg back for him so he could kick the ball. We were just playing like that and she looked up and said, ‘Mommy, when you and Daddy die am I taking care of Phillip?’ She was seven-years old. I was so glad I had prepared myself to answer that question. I told her, ‘Your Daddy and I are making arrangements so you always have a choice if you take care of Phillip or not.'”
That dual message of acknowledgement and empowerment that launched Wisconsibs continues to drive it today.
“Basically what we want for our kids is the freedom to be who they are.,” Harriet said. “I wouldn’t want to take that away from Christiana, nor would I want her brother to take that away from her.”
Initially shocked by the lack of programs, or even books, offering support for siblings of people with disabilities or lifelong illnesses, Harriet eventually discovered the Seattle-based Don Meyer and his Sibshops, programs designed for the brothers and sisters of children with special needs.
“He’s always encouraging me,” Harriet said. “We were years into doing this and there was something that came up I could not solve and I called Don and I said,’ What do other groups do when they deal with this?’ and he said , “Harriet, your group is the only one doing this.’ We’re the only one that has built a comprehensive lifespan mission. We did it here in the Fox Valley because that’s what I was concerned about.”
Today, Wisconsibs offers Sibshops for children aged 6-12; Journey Forward, workshops to assist in planning for adult siblings with disabilities; summer programs; Sibling Summit, a full-day event full of speakers, information and support; social events; the Siblings Choice Awards; Consulting and Coaching; and Sibs are my Peep®, because, as Harriet says, “I have to keep it fun. That is a value of ours . We keep things fun We keep things fun and positive while we deal with things that our pretty challenging.”
“We knew that this was a lifelong journey that siblings experience,” Harriet said. “You don’t graduate from being a sibling. Even if your sibling passes away, you’re still a sibling. You still have that experience and those emotions and knowledge. It makes you you and it never never goes away. We wanted to keep adding programs to fill out that life span.”
As they celebrate their first generation of siblings, Wisconsibs plans to continue their expansion throughout the state. They are building a new database, enriching their programs, and broadening their fundraising appeals.
“We want to be able to match siblings within the state and even outside the state with programs and morale-boosters and emotional support that can help them,” Harriet said.
As executive director, Harriet says she counts on the support of the Wisconsibs board members and the community it represents.
“We’ve never asked for a ton of money,” Harriet said. “We’ve been a shoestring operation, but that takes people who give you moral support, financial support and get your vision. That’s huge. When you’re working with a population that has been overlooked and unseen even within their own families, it’s huge to have a community acknowledge that they have needs too.”
Though Harriet’s journey (and her ageless energy) has been quite extraordinary, her goal, and that of the program she founded, is the opposite.
“Someday, it will be like, what? There were no sibling programs? I can’t imagine that!,” Harriet said. “Someday it will be quite ordinary and that is the objective. I’d say 100% of the siblings would like that. Just to be ordinary.”