For the parents of children who stutter, managing the communication disorder alone can be stressful and isolating. At Saint Louis University’s Speech-Language and Hearing Clinic, one mother discovered a team to help her daughter communicate more confidently at school and home.
Now, Jaimie Saunders, the mother of a child who stutters, is on a mission to be sure others know there are resources that can help.
I don’t think the African American community, in particular, is aware of the services out there for parents and caregivers of children who stutter.”
Last year, Saunders met Christine Rose, a clinical instructor specializing in stuttering at SLU’s Speech-Language and Hearing Clinic. The clinic operates as a no-fee clinic and serves a clientele who may otherwise not have the resources to afford assessment or treatment.
Rose serves as a school-based speech-language pathologist and supervises SLU graduate students three days a week at City Garden Montessori, where Saunders’s 13-year-old daughter, Octavia, attends school.
Saunders is quick to note that her daughter’s stutter does not define her nor cap her potential. With that in mind, she also knows that skills to communicate more effectively will help Octavia as she moves through life.
Rose worked with Saunders to customize speech therapy services to meet Octavia’s specific needs.
“The sole purpose of speech therapy isn’t to make the person fluent because that sets an unrealistic expectation for some people,” said Rose, who was recently awarded Spero Stuttering, Inc.’s Ally of Stuttering Speech-Language Pathologist designation for her advocacy efforts. “We focus on helping people communicate more effectively.”
Saunders says the biggest misconception about stuttering is that it’s developmental and it will go away.
“When I looked up at nine or 10, and she was still stuttering, I thought ‘this might not be going away like they told me,’” Saunders recalled. “No one ever said to me that she may be a person who stutters for the rest of her life.”
Disruptions in Speech
Stuttering is a communication disorder involving disruptions, or “dysfluencies,” in a person’s speech. The severity of stuttering varies widely. It’s estimated that about one percent of the adult population stutters. This would amount to almost three million people who stutter in the United States alone. According to the National Stuttering Association (NSA), there is no reliable, research-backed “cure” that works consistently and over time for all people who stutter.
Rose says stuttering likely has many possible contributing factors, though the exact causes are unknown. She adds that for many, there is a genetic component and there may be differences in white matter located in the communication zones of the brain. She says stuttering is individualistic with a unique pattern and rhythm.
“We can look at stuttering as a verbal diversity because it’s part of who the person is,” Rose said. “That’s part of their genetic makeup and neurology.”
Rose says there’s still a lingering idea that, “We shouldn’t talk about stuttering because it will make it worse.”
Support for parents
Before Saunders connected with Rose and SLU’s Speech-Language and Hearing Clinic, she struggled to find resources for her daughter.
“I needed a comfy couch to lay on because of the guilt I felt because I couldn’t fix it,” Saunders said. “I felt isolated and alone. I felt like there was no one I could talk to who would understand.”
Knowing others likely shared her experience, Saunders teamed up with Rose to provide some of the support she says was missing for parents and caregivers like her.
Saunders and Rose approached the NSA about starting a parent group. Realizing a need, the NSA launched the local family chapter and elected SLU as its sponsor and Rose as the regional adult chapter coordinator.
The local family chapter is a free virtual support group for parents and caregivers to share the challenges and successes of raising a child that stutters. Saunders received the Parent of the Year Award for her advocacy at the NSA’s annual conference in California. The parent group she co-founded also won Family Chapter of the Year.
“This has opened my mind to the emotionality of raising someone who stutters and the great importance of teamwork throughout the process,” Rose said.