We had been focused on Alex learning speech techniques, as if it was not OK to stutter. The workshop taught us instead to encourage him to say what he wants to say even if he stutters.
The Intensive Stuttering Program at CHOP, the first program of its kind in Philadelphia, led by CHOP speech-language pathologists, is an intensive summer workshop for teens who stutter.
During the week-long workshop, teens participate in a wide range of activities, including researching the science of speech on the Internet, reflecting on stuttering in writing or artwork, and practicing everyday interactions that can be difficult or daunting. For example, they simulate ordering at a restaurant, then go to the CHOP food court and actually do it.
Each day, the program has a guest speaker who also stutters. Award-winning chef Marc Vetri, who provided financial support for the program along with the Cozen O’Connor Foundation and the Millard and Lillian Prutky Charitable Trust, was the guest speaker in 2012.
When he originally went into the kitchen, Vetri assumed he wouldn’t have to talk much. But making the best gnocchi on the planet attracted a spotlight, and soon he found himself doing TV and radio interviews, even appearing on (and winning) “Iron Chef America.”
“Be comfortable in your own skin,” Vetri told the kids. “Don’t let your stuttering change the way you live your life.”
During the summer 2012 workshop, Alex wrote: “Dear stuttering, why are you always following me wherever I go? You are like a constant anchor on me, always holding me back.”
The anchor has weighed on Alex, 12, in subtle and not-so-subtle ways. For example, he plays lacrosse but stayed away from wrestling. “Before the match starts, you have to say your name and weight,” he explains. “I was scared I’d stutter.”
For children who stutter, that type of simple conversation — ordering lunch, asking for directions, answering a teacher — can become the stuff of sweaty palms.
Stuttering is more common than most people realize, affecting 3 million Americans, or 1 in 100 people. It's neither a behavior nor a tic; people don't stutter because they are nervous. It is a neurodevelopmental disorder, meaning it is caused by structural and functional differences in the brain.
"That's important to remember," said CHOP speech-language pathologist Joseph Donaher, PhD, one of only 175 board-recognized specialists worldwide in stuttering. "Think about someone with a seizure disorder — you're not going to say to them 'Just stop seizing.' But with someone who stutters, even though it neurologically based, there is a perception that they can willingly stop it if they just slow down or use speech techniques."
Donaher runs the Stuttering Program at CHOP's Center for Childhood Communication, which provides diagnostic services, interventional therapy, and consultation for schools and community-based programs. The workshop was created as a way to reach more kids at a time when insurance reimbursement is drying up for developmental conditions like stuttering.
“We want kids to be effective communicators, whether they stutter or not,” Donaher says. “Techniques like you see in the movie ‘The King’s Speech’ can certainly help, but should the goal be 100 percent perfect speech — which is very hard or impossible for some of these kids — or better communication? We tell them stuttering doesn’t have to take away from the message.”
Many of the teens came to CHOP's 2012 summer program with heads down and headphones on. By the second day, they were laughing together, trading texts and forging new social networks.
“It was cathartic,” Donaher says. “All of a sudden kids who never talk about their stuttering, who hate talking, get to hear other kids who are going through the same thing.”
The last day of the workshop incorporated parents and families.
Donaher and his team are looking forward to the next workshop in 2014. “Our hope,” he says, “is to secure grants or donors so that cost won’t be an issue for more families to come.”
Alex is looking ahead, too. After voicing his reluctance to wrestle, he has decided to try out after all: “I think it’s easier for me to stutter now, and I think I can achieve whatever I want to.”
The 2014 workshop is scheduled for June 23-27; detailed information will be available soon.
Interested families and donors can contact Donaher at 215-590-7637 or by email.
Reviewed by: Joseph Donaher, PhD
Date: January 2014