11/19/2013 09:26 am ET Updated Nov 19, 2013

'Redefine Positive': One Mom's Campaign For Better Educational Resources About HIV

Jodie Howerton's son, Duzi, 8, has always known he has HIV.

"He knows that his birth mother died of AIDS," Howerton said. "And he knows that if he takes his medication, HIV will stay sleeping in his body, so he doesn't have to worry. As long as he takes his medication, it'll stay asleep."

What the boy's mother -- and a growing pool of contributors to her campaign, "Redefine Positive" -- want you to know is this: Duzi is not scary. Unfortunately, that's a message that existing HIV educational materials may not be teaching kids. But Howerton is working hard to change that.

The communications consultant and her husband, Mike, knew Duzi had HIV when they adopted him at age 5 from South Africa in 2010. When their daughter, Alexandra, was in 5th grade, parents in the family's Washington state school district were invited to take an advance look at educational videos about HIV the school planned to show students. Howerton said she was one of only three parents to show up for the preview.

"I wanted to make sure that they were teaching about it well," Howerton told HuffPost in an interview. "Well, they weren't. The video they showed us was from the late '80s. Not only were the hairstyles old, but the information was outdated."

As she explained in a blog post, the video featured newspaper headlines like "Thousands Die of AIDS." HIV was personified as a red monster. At one point, there was a shot of the grim reaper. And, it didn't bring up the possibility that someone could be born with HIV, she added in an interview with The Seattle Times.

HIV/AIDS education is required by state law in Washington for students in grades 5 to 12. According to the state Office of the Superintendent of Public Instruction, resources used in Washington schools' HIV/AIDS curricula must either come from the superintendent's office or be approved for medical accuracy by the Department of Health.

While Howerton said she understands that messaging prevention is "a delicate balance" -- kids should certainly know that they do not want to get HIV -- the tenor of the video's message about people who have the virus spurred her into action. Recent events, including the exclusion of three students suspected of having HIV from a school in Pea Ridge, Ark., show that confusion and discomfort surrounding HIV continues. ("If the staff themselves are misinformed, what are the students learning about HIV?" Howerton asked in a blog post about Pea Ridge.)

Stories of parents battling school districts over everything from progressive curricula and controversial punishments to the dress code violations are all too familiar. But Howerton stressed that her situation is different. She didn't blame the school. Instead, she looked for a way to solve the problem, and administrators at the district and state levels proved willing to help.

"I realized the teacher was just showing what they'd always shown. It was what the district had given her to show. It wasn't her fault," Howerton said.

Northshore School District's health and nursing supervisor, Sandra Tracy, agreed that the film was out of date, but said there was nothing better the school could use. Howerton was initially skeptical of the claim, but confirmed it for herself.

"I know that sounds impossible, but [materials] we found were like -- they were terrible," Howerton said. "None of them communicated the compassionate message that I felt was really, really necessary."

The district dropped the video.

Almost a year later, Howerton came back with a new idea: She wanted to make her own film.

Tracy told HuffPost she supported the idea, and agreed to consult on the video content and and overall messaging. The Office of the Superintendent of Public Instruction and Seattle Children's Hospital Foundation, similarly enthusiastic, have joined Howerton in her campaign.

The difficult part was finding the money. Since funding wasn't available through the state, Howerton turned to crowdfunding -- first on Indiegogo, where she quickly exceeded her initial goal of $14,000, and then on the Seattle Children's Hospital website. Ultimately, she hopes to raise enough for four separate videos: one each for 5th grade, 6th grade, junior high and high school. She said she has raised $45,000 so far, with the help of grants from Seattle Children's, and is shooting for $150,000.

Howerton has quit her job to work on the videos, which she said will ultimately be "free to anybody who wants them," and hopes to start filming the first in December. "We have started casting interviews, storyboarding, and script writing," she said. "We've identified several potential families that are infected and impacted by HIV to be in the videos."

Another challenge that Howerton and her husband faced was the decision to tell the wider world that Duzi is HIV-positive. Before this campaign, the family only revealed Duzi's status when it seemed necessary. But "we've disclosed openly now, because we just want him to always be unashamed. Never feel like he has to hide anything." Which is, of course, the whole point.

As for Duzi, his mom said, "his awareness of this campaign is, 'Mom, I'm not scary. I don't want people to watch something that makes them think I'm scary. ... I'm only scary when I'm pretending to be a dinosaur.'"



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