Joe Pulizzi and Pam Kozelka have built a successful business and nationally recognized event around helping brands find their voices and tell their stories. The couple’s latest business venture—The Orange Effect Foundation—has a similar mission: to help developmentally disabled children find their voices.
Communication is a passion for Joe, the world’s foremost content marketing evangelist. He founded the Content Marketing Institute and penned the bestseller, Epic Content Marketing. Pam, his partner in business and in life, serves as vice president of operations for his successful company and oversees the annual Content Marketing World, a premiere event for brand storytellers.
But Joe and Pam have their own powerful story to tell—one that has nothing to do with business or branding. It’s a personal tale about the heartbreaking and heartwarming nature of parenthood, the challenges their family has triumphed over, and their mission to help other children overcome similar obstacles.
And it all starts with a very special young man named Joshua.
The Orange Effect Foundation (OEF) officially launched this spring, but its story began more than a decade ago, when Joe and Pam’s first-born son, Joshua, was diagnosed with autism.
In those days, Pam was a stay-at-home mom with a healthy baby boy. But by the time her son was 18 months old, she knew something was different about him. “We were in play groups with other kids around the same age,” she recalls. “When we went to their houses, Joshua would play with their toys but never showed any interest in the other kids. They would play with each other, hopping around from one toy to another. But Joshua would focus on one toy the entire time. The other kids were starting to form words or to have some semblance of communication with their parents, and Joshua just wasn’t.”
In the beginning, Pam and Joe chalked these differences up to Joshua’s unique personality and speed of development. As Joe puts it, “When you’re a parent, especially a first-time parent, you just assume your kid is different because he’s your kid. We’re all a little weird, and normal is relative. So he didn’t make eye contact and would play with one toy for hours. That was just Joshua.”
But during Joshua’s two-year checkup, the pediatrician grew concerned about his behavior and referred them to a specialist at the Cleveland Clinic. After a few appointments, family interviews, and failed attempts to do play therapy with Joshua, the specialist gave them a diagnosis: moderate autism.
Pam wasn’t scared by the initial diagnosis. A former social worker, she knew the condition wasn’t life-threatening and felt up to the challenge. “I was like, ‘Okay, we can do this. Let’s tackle it head on and figure out what we need to do.’ But as we got more into the research and therapy, I started to worry he wouldn’t be able to have relationships as an adult, that he would always be on this little island in his own head and not get to experience all the fun parts of life.”
Joe had similar concerns when he heard the diagnosis. “All these flashes go through your mind—’Oh, my kid’s not going to be able to do what other kids are’—and you feel sorry for yourself. But once you get past that, you realize he’s wonderful just the way he is. Every kid is different in their own way, and this is just one struggle. I think it was advantageous for Joshua to be in our lives—to have parents who know a bit more about communication than the average person. Understanding how critically important it is, we really doubled down on therapy, believing that would help him become the person he wanted to be.”
As it turns out, they were right.
In the United States, 1 in 68 children falls somewhere on the autism spectrum disorder. While Joshua is not among the most severe cases, he had some major challenges to overcome.
Thanks to early intervention—including aggressive speech and occupational therapy—he has become quite the success story. But in the early years, progress was slow. “There was never a breakthrough moment,” says Pam. “There were definitely more moments where we were concerned than relieved. Sometimes when the speech therapist came to the house, Joshua would literally run in the other direction.”
But Pam and Joe were determined Joshua would have the best possible chance for success. So they stuck with it until those aha moments finally started to come.
After learning everything they could about Joshua’s condition, Pam and Joe came up with their game plan. “We were Googling like crazy,” says Pam. “But 12 years ago, the resources weren’t there that are there today. We didn’t have the networking or family support groups you could find now. We used what we learned to bring help into our home, including a speech therapist and occupational therapist.”
They also trained a group of college students to work with Joshua, starting with simple goals such as eye contact. “Kids with autism tend to look away during conversations,” says Pam. “They’re hearing you and processing just fine, but don’t naturally do what our society considers to be the polite thing: to look at people who are speaking to them. So the students would do activities with him or play games and literally keep a score sheet of how often he made eye contact. The goal was for him to understand that eye contact is a good thing and that he would get rewarded for it, with a goldfish cracker or whatever.”
Once he had that down, they moved on to other communication goals, such as saying “go” when he wanted someone to turn on his favorite toy train.
By the time Joshua turned four, he had a little brother, Adam, who was hitting all his developmental milestones on time and wanted to play with Joshua. Between the speech therapy, his work with the college students, and having Adam around, Joshua had made enough progress to enter a “typical” preschool program, meaning one that wasn’t geared toward special needs children. He also attended a typical kindergarten, with a dedicated classroom aide to watch out for him.
By first grade, Joshua could attend classes on his own. An aide helped him stay focused during tests, but otherwise he followed the same curriculum as everyone else. By fourth grade, he no longer needed even that much assistance. “He continued with speech and occupational therapy through second grade, but he’s been pretty home free since then,” says Pam. “Knock on wood.”
Today, Joshua is in eighth grade. He’s class president, has good friends, plays the conga drums at school assemblies, and sings with the local School of Rock program. “When he was little and couldn’t handle a lot of noise, we couldn’t even sing ‘Happy Birthday’ to him,” Pam recalls. “We would have to just say the words quietly. Now to have him go up on stage and sing ‘Hey Jude’ with a rock band, it’s a really amazing change.”
Joe couldn’t agree more. “Joshua enjoys getting up in the morning and enjoys life and is a truly unique individual. And that’s all I ever wanted for my children. He knows that whatever he decides to do, he can go after it and nothing is going to stop him. I just love that he has that kind of attitude.”
As a mother, Pam can’t help but worry about next year, when Joshua will start high school and leave the building and classmates he’s been with since kindergarten. But with all the progress he’s made, she believes he’ll ultimately succeed in the new environment. “I appreciate every milestone in his life,” she says. “I cry every single time he gets up on stage to speak or sing. I’m going to be ‘that mom’ everywhere he goes. And there’s nothing wrong with that.”
While Joshua has certainly learned a lot from his parents over the years, he has taught them just as much. For Pam, the lesson has been to accept individuality and to pick her battles. “I learned to ask myself, ‘How important is this going to be 10 years from now?’ Joshua not talking by the time he was three years old; that would be important 10 years later. But slapping his hands to release nervous energy was not going to be life-threatening or slow his development, and he needed that outlet. I’ve learned to focus on the long-term goals. He is kind, loving, open, and exceptionally honest. That is far more important to me than the fact he has worn camouflage clothing every day since first grade. His father wears orange every single day, so we know he gets it honestly.”
The most important lesson Joe has learned from Joshua: There’s no such thing as normal. “Everybody has their quirks,” says Joe. “Everybody is different in their own way and we should celebrate the differences. I’m certainly not normal … I think the world knows this about me.”
Joshua is a shining example of how early intervention and support make a difference for children with developmental disorders. As Joe puts it, “The kid has ‘potential’ written all over him.” But many families with disadvantaged children can’t afford the resources they need to get such positive results.
Joe, Pam, and both of their extraordinary sons want to change that.
In 2007, the family began hosting an annual “Golf for Autism” event, which has raised more than $100,000 for autism research. After each year’s tournament, Joshua gives a speech to thank participants and to tell his story.
That’s when OEF board member Kristin Kelley-Erbacher first met Joshua. She says, “For what he’s been through, to hear him get up in front of 100 people and talk openly, you would never know the issues he’s dealt with throughout his life so far. He’s just a very bright, charming, and genuine young man.”
Now, with the help of passionate board members like Kristin, Joe and Pam are going bigger—extending their reach beyond the annual golf event and beyond autism research. Instead, OEF will help all kids with speech disorders, which affect roughly 8 to 9 percent of young children.
“There’s all kinds of focus on research, but not enough on therapy,” says Joe. “If your family is well-to-do, you’re fine. And if you’re in a state that covers this, you’re fine. But most people are struggling to find the resources they need.”
By the end of November, OEF will begin accepting applications from families who need support, which could include extra therapy services their insurance doesn’t cover or some piece of technology that could help their children communicate. “Some children just need therapy,” says Pam. “Others may never hear or speak well. These kids might need hearing aids or keyboards that can talk for them. There’s also a robot that’s super fun for kids, but you have to talk to the robot in order for it to play with you. That’s a tool that might help children in the home environment, but it’s fairly expensive, so many parents would need help purchasing that.”
In the meantime, Joe, Pam, and their team are working to get the word out about the new organization and raise funds. The first big push was at this year’s Content Marketing World. During Joe’s keynote speech, they debuted a powerful video telling their family’s story and showcasing the work OEF will do.
“After we showed that video, more people at the event wanted to talk to me about OEF than content marketing,” says Joe. “I had hundreds of people waiting for me in the hall, who engaged me in these very personal conversations about their sons, daughters, nieces, or family friends who are struggling with the same challenges my family has been through. It was so surprising and inspiring to see how many people’s lives are touched by the kind of work we want to do. It blew me away, and I came out of that knowing we are really onto something here.”
Joshua thinks so, too, and is excited to be part of helping kids like him get the same opportunities he had. Pam explains, “When we made the decision to launch this organization, we sat down with both Joshua and Adam, and asked if they would be comfortable with us putting our family out there like this. I’m proud to say they didn’t hesitate at all. I think because they have been so involved with the golf outings, and because Joe and I have been active in other areas of community service, they understood it was the next step on our journey as a family.”
While Joe and Pam hope to eventually grow the organization to help children all over the country, both agree that helping even one family achieve what Joshua has proven is possible would be enough to make all their efforts worthwhile. “We’re not trying to end world hunger or house the homeless,” says Joe. “We just want to affect one family at a time—to raise some funds, get it to a family who needs it, continue to follow up with that family, and then await feedback. If it’s positive and we’re doing a good job, we’re going to do more of that and continue on for as long as we possibly can.”
Want to help OEF achieve its inspirational mission? Start by spreading the word. Share this article with your social networks or with families who might need OEF’s support. Or visit TheOrangeEffect.org to contibute to the cause. And whether you have a need or want to share your time, resources, or personal story, you can email Pam at email@example.com.