Advocate

 

ABC.

Advocate for Families across Ohio

Bonnie Shuman has been coming to the Ohio Statehouse for three years to advocate for families struggling with Fetal Alcohol Spectrum Disorders (FASD). But, really, she’s been advocating for families like hers for 28 years.

It was 33 years ago that she and her husband Thom saw a photo of a young boy, about 18 months old, who needed a family to adopt him. They agreed to open their home to Teddy, who has FASD.

FASDs are a group of conditions that occur in a person whose mother drank alcohol during pregnancy, according to the Centers for Disease Control and Prevention. They can cause a range of issues, the CDC says, including hyperactivity, learning disabilities, speech and language delays, problems with the heart, kidneys, or bones, and others. FASDs can cause these issues to become more profound.

“There are a lot of symptoms of FASD, and they vary from person to person just like they would in other diseases,” said Bonnie. “The important thing to know about FASD is there’s no safe amount of alcohol to drink. And it’s 100 percent preventable.

Teddy’s more severe mental and developmental health issues, which began when he was turning 7, multiplied stress in the Shuman home.

Bonnie and Thom had to restrain Teddy at times. Because of his unpredictable meltdowns, they couldn’t trust babysitters to care for him, take him grocery shopping, or take family vacations. They had to contact agencies, residential facilities, advocate for Teddy’s needs, travel to and from therapy, and fight against institutions that held so much power over his care.

“You basically lose life,” said Thom, Bonnie’s husband. “If we went to Thanksgiving and Teddy was ready to leave, you needed to go right then. If he had a blowup at church (where Thom preached), Bonnie would have to get him out of there or I would have to interrupt the worship service.”

“Your whole life turns upside down,” Thom continued. “At the same time, this is your child. You love them, and you try to provide them with the best life you can.”

And while the logistical strains are immense, the emotional strains can be even more exacting.

“At times,” Bonnie said. “I did not love my son.”

Like many parents raising a child with a disability, Bonnie and Thom turned to a support group to help navigate the challenges presented by FASD and give them an outlet for advocating for children like theirs. The group spoke to anyone who would listen—teachers, nurses, Head Start organizations, foster parents, and others.

Finally, after 14 years of placements in three states, Teddy was court-ordered into the Columbus Developmental Center. Bonnie and Thom struggled with driving from Cincinnati to Columbus, so they packed up and moved to the capital city.

It was at Columbus Developmental Center where things finally started to click, according to Bonnie.

“We found a community that really understood what FASD was,” said Bonnie. “For the first time, Teddy had relationships with peers, staff that understood him; and he developed into this delightful, wonderful, capable person.”

Around the same time, Bonnie felt that the community around her was catching on to FASD, how it was caused, and what few resources were available to families. She joined the Ohio FASD Steering Committee and, in addition to raising awareness, she advocated for policies to prevent FASD.

She decided on a simple idea—legislating places that sell alcohol to put up signs that say “the consumption of alcohol during pregnancy may result in birth defects.”

She set out alone but determined.

When you have FASD in your life, you feel like you’re on an island like you always have to do it alone,” said Bonnie. “You hear all these stories about families getting bills passed, but I found out it doesn’t work like that. I realized I couldn’t do it alone, and I was feeling really hopeless.”

“That’s when Fran and J.P. came into my life and where Prevention Action Alliance came to be a real friend to me,” Bonnie continued.

Prevention Action Alliance Executive Director Fran Gerbig invited Bonnie to bring her testimony to PAA’s annual Advocacy Day, which connects advocates for prevention like Bonnie to state legislators. J.P. Dorval, PAA’s advocacy and public policy liaison, helped connect Bonnie to information, resources, and legislators.

Bonnie took her idea and, with dozens of advocates from across Ohio, descended upon the Ohio Statehouse with data, stories, and a will to improve health outcomes. After two years of advocating with PAA on behalf of her bill, it was recently introduced as Senate Bill 340, sponsored by Senators Stephanie Kunze and Teresa Fedor. SB340 would create a warning about FASDs at the point of sale for alcohol products.

“I just hope this legislation will start the ball rolling,” said Bonnie. “This whole thing will not be an end, it’s a start of working to address FASD.”

Bonnie credits getting her bill introduced to luck—luck in finding senators who would listen to her and sponsor the bill, luck at serving on a committee with Fran, and luck at finding Prevention Action Alliance to help her.

“You have to have folks with you who know what they’re doing or who can find out very accurate information,” said Bonnie. “You need someone who can connect the dots.”

Bonnie is the driving force behind this bill. Without her energy and effort and determination, this wouldn’t have gone anywhere,” said Thom. “PAA was the catalyst that helped it take place.