“We always knew we wanted to have a big family,” says Julie Butterworth. “We wanted to be like the Brady Bunch – three girls, three boys.” Julie and Michael Butterworth came close to experiencing the famous T.V. family life by having five children, but when their youngest daughter, Savannah, was born, Julie said that she knew something was just different about her.
It wasn’t until a few years later that their older daughter, who volunteered at Cedar Creek Therapeutic Riding Center, mentioned to Julie that Savannah sometimes acted like some of the kids with autism that she worked with at Cedar Creek. Shortly after her daughter’s observation, Savannah was diagnosed. “It was a very stressful time for our family,” said Julie.
About this same time in their lives, the Butterworth family experienced another significant change. Their 11-year-old son, Jonathan, experienced an arteriovenous malformation (AVM) rupture which resulted in bleeding in his brain. “He wasn’t expected to live through the night,” says Julie. “But he’s a trooper and fighter and he’s been stumping the doctors ever since.” Jonathan continues to make progress toward speech, core muscle strength, walking, improving overall gross/fine motor skills and improving cognitive functioning. Jonathan’s neurologist at MU Health Care is even writing a case study about his progress.
“We were connected to Boone County Family Resources and it has been a very positive experience,” she says. “Our support coordinator, Kip, has always answered every question we ever had and has gone above and beyond to help our family.”
Through coordination from BCFR, both children participate in the Partnership for Hope waiver program which helped fund a wheelchair ramp for Jonathan when access to his family’s split-level home became difficult, and assisted in getting Savannah personal assistant services and behavioral intervention specialist services.
Additionally through the Partnership for Hope waiver, an augmentative communication device called a ProxTalker, was purchased for Savannah who is non-verbal. Julie says Savannah has made a lot of progress with the device, using it to ask for specific snacks she’d like to have. Julie’s older daughter chimes in, “it’s funny to hear her asking for her favorite goldfish crackers over and over in the device’s ‘computer’ voice.” “Not necessarily at 5:30 a.m., though,” adds Julie with a sigh (and a smile).
“Our support coordinator has done so much to help get us tapped into every resource available to us which has helped our family in finding ways to stay active in the community, not hidden away due to the kids’ disabilities,” says Julie. “Up until Savannah was born, I had homeschooled all of my children. Kip helped us navigate the available opportunities for Jon and Savannah with Columbia Public Schools. We never could have done that on our own.”
Jonathan and Savannah also both participate in horseback riding at Cedar Creek Therapeutic Riding Center, Challenger Baseball and Adapted Gymnastics. “My other typically-developed children say these two are spoiled rotten!” The family also enjoys attending the adapted church service at The Crossing which has a special service just for kids with autism. “We are always busy doing something.”
Being active in the community has helped the Butterworths adjust to their to their not-so-Brady-Bunch-family life. “Through activities like Challenger Baseball, we’ve met several other families who have kids with disabilities. It doesn’t matter what your child’s disability is, when you can meet other families going through similar life situations, parents bond with each other. You have a support network.”
The Butterworths may not have the typical T.V. sitcom family life, but Julie says they do just fine. “It’s a team effort. We try to be flexible and roll with what life hands us.”