Stuttering Students Turn to Groups for Support 

click to enlarge

• Don Whipple
• Left to right: Jack King, Barb Limoge-King, Bill King, Olivia King and Sam King

Sam King felt paralyzed. His heart was pounding so hard, the junior at Lake Region Union High School in Barton thought he was going to pass out in his psychology class. He and two of his classmates had to put on a skit.

Sam had practiced saying his lines during rehearsals. But when it was time to perform in front of the class, the 16-year-old felt the familiar block in his throat. He took a deep breath and tried to force the words out. He eventually ran out of breath and had to start again.

Then, instead of saying his lines — "I'm in class. I can't check my phone right now." — Sam blurted out: "I have a stuttering problem. And it makes it hard for me to talk." He then asked his friend Trent to deliver both of their lines.

"I was so horrified with myself and the situation," he later recalled. While his classmates continued with the skit, Sam "blacked out," he said. Even so, he was glad he had finally revealed his stutter. "It felt good as I was sitting down," he remembered. "The amount of relief I got outweighed the embarrassment."

Sam is among more than 70 million people worldwide with a speech disorder characterized by repetitions, prolongations or blocks. That's about 1 percent of the population, according to the Stuttering Foundation of America. "Instead of taking the superhighway to get the idea from your brain to your mouth, it might take the slower, country road," explained Dr. Danra Kazenski, clinical assistant professor of communication sciences and disorders at the University of Vermont.

Despite years of research, no one knows exactly what causes stuttering. Possible factors include genetics, child development, neurophysiology and family dynamics. There's no cure, either, but there are various treatments, including speech and cognitive behavior therapy and support groups.

In Vermont, support group meetings for school-age kids and their parents, as well as for teens and adults, are organized by the Burlington chapter of the National Stuttering Association. Kazenski is the coleader, along with Dr. Barry Guitar (see interview in sidebar). Meetings in Burlington are the only option, even for Northeast Kingdom kids like Sam.

His parents began to notice he had trouble speaking fluently when he was a preschooler. They took him to a pediatrician, who told them Sam was just trying to hold their attention. According to the Stuttering Foundation, stuttering is part of normal language development in kids between ages 2 and 5 — 5 percent of all children go through a period of stuttering that lasts at least six months. Three-quarters of those will recover by late childhood, but 1 percent will continue to stutter into adulthood.

When Sam was in sixth grade, he wanted to invite a friend over but refused to make the phone call himself — it's common for people who stutter to avoid using the phone because of the time pressure, and because they can't see the listener. That was when his parents realized Sam's stutter hadn't gone away. Instead, he had developed a bag of tricks to help him get by, such as avoiding words that began with hard consonants including d, c, t, g and k, and instead using words that were easier for him to say.

"I tried to hide it as much as I could," Sam said, noting that he was most afraid of stuttering in front of his teachers. "I'm not sure how they'll react. They might think I'm not as smart. Or I have a mental issue," he explained.

"People don't know what's going on," the teen continued. "A lot more comes with stuttering. It's not just the speech part. Like, worrying all the time, exhaustion from word swapping. Having to do that every day. All day."

Just talking at all could be draining for Sam. "I lose eye contact. I feel it in my throat. The word wants to come out, but it can't. It feels like there's a wall in my throat. I lose my breath. After a long break, I run out of breath," he said, between pauses.

During middle school, Sam met with a New Hampshire-based speech therapist in St. Johnsbury — the midpoint for both of them. He was taught to exhale a little bit before speaking to slow down his rate of speech. But Sam felt it was too tiring to keep using the technique. When he entered high school, he got busy with sports practice and stopped going to speech therapy.

The tipping point came when Sam was a sophomore and enrolled in honors English. After his first class, he told his mother, Barb Limoge-King, that he didn't want to return. He wrote a three-page letter to his parents because he wanted them to know how he felt.

"He was worried about the future, thinking about job interviews, meeting his girlfriend's parents for the first time, saying his wedding vows," recalled Limoge-King, who is a guidance administrative secretary at Lake Region Union. "I had no idea he was going through all of this. I burst into tears," she added. "I had my husband read it. He burst into tears. We thought everything was OK."

Limoge-King credited Sam's guidance counselor for helping him understand that his stutter didn't define him as a person and that it shouldn't prevent him from achieving success. Although Sam was hesitant, both mother and son attended the teen support group meeting in Burlington, two hours from their home in Barton.

"In individual therapy, we will target personalized goals," Kazenski said, noting that clients "will have structured home practice that we will send home with them." Support group meetings "address self-acceptance" and are "more informal," with participants sharing their experiences and making connections.

Kazenski estimated that some 6,000 people in Vermont stutter. But for most participants, attending the support group is the first time they encounter other individuals with the disorder.

A familiar face at the UVM meetings is Ben Manning, 24, who's training to be a speech-language pathologist at the university. He attends the meetings for the teen and adult groups, and runs the groups for school-age kids and their parents with Kazenski.

At those monthly gatherings, Kazenski stays with the parents, who share whatever is on their mind, while Manning facilitates the kids' portion. At a recent meeting, parents talked about how to be strong when other family members struggle with their child's stuttering; the kids made pizzas.

Manning also stutters, and his personal experience is similar to many of the students'. Like Sam, Manning stopped going for speech therapy when he entered high school; he wanted to go to ski practice instead.

At college, Manning chose to major in geology because the coursework didn't require many oral presentations. After graduation, he said he couldn't even apply for jobs because he was too afraid to talk to employers. That was when he decided to join support groups and resume speech therapy.

Today, Manning doesn't hide his stutter, and he consistently uses techniques when he talks. One of them is "fake" stuttering, which desensitizes him to his stutter. "I can do speech techniques all day in a therapy session. 'Cause that's wh-, where, where you start," he said. "The trick is, the mi-, minute you change environments, you have to kinda relearn how to do those things in those environments." Manning added, "I, I, I still feel uncomfortable when I'm caught in a stutter, um, because of social and emotional condi-di-di-ditioning from it."

Meeting Manning was "awesome," Sam said. "His attitude is just amazing. He tries to laugh about it."

"My main thing is try to m-m-m-make it seem OK and, like, cool," Manning said.

The other teens in the support group also helped Sam feel less alone when they shared their experiences and struggles with stuttering. But the four-hour round-trip commute and Sam's sports practice prevent the Kings from being able to attend the meetings more regularly.

Fifteen-year-old Mary Hoyt, who also stutters, can relate to the difficulties of commuting to Burlington. The Orleans teen has also made a connection with peers in the support group. "But they live far away," she said, adding that she would like a group closer to home.

Monica Menard is a speech-language pathologist at the Orleans Central Supervisory Union, which includes Barton, Glover and Orleans. Along with Sam and Mary, she has identified five other students in her district who have a stutter, though not all of them choose to get speech services. Menard introduced the Kings to the Burlington teen support group and took Mary to one of the meetings, as well.

But, Menard added, it's also important to increase awareness of stuttering among teachers, peers and the larger community. The disorder tends not to receive the attention given to cognitive and physical disabilities. And, she suggested, stuttering may not always be diagnosed.

Judy Hoyt, Mary's grandmother and guardian, admitted it wasn't always easy for her to watch her granddaughter struggle. "First thing I want to do is answer for her, to make it easier for her, but that's not the answer," she acknowledged. Now Hoyt allows Mary "to go at her own speed when she's talking" and doesn't interrupt her.

Mary started getting speech therapy when she was in third grade. But being pulled out of class made her feel self-conscious, and she was a target for bullies. "Mary was begging to be sent to a different school," Hoyt recalled.

By eighth grade, Mary had stopped going to speech classes. She doesn't use the techniques she was taught because her mind goes blank when she stutters. Instead, she's found new coping methods. For example, when she's introducing herself, Mary prefers to be brief: "I say, like, um, I say like, um, 'Mary, from Orleans.' Um, and 'I like singing, songwriting and that's it.' So I don't, so I don't say, so I don't say, 'I'm, I'm Mary. And I'm from Orleans.'"

During language-arts class, the young singer-songwriter listens to music on her phone with one earbud. She told her teachers that doing so allows her to focus less on her classmates, and she doesn't have to worry about them looking at her. "They said I could 'cause it helps me as long as I'm pay-, paying attention in class," she said. Mary's playlist includes "Let It Go" from the movie Frozen. "It, um, it talks about her, um, not, um, worrying about herself, and so, and so that helps."

Now that Mary is a freshman at Sam's school, Sam said he feels "less isolated." Like Mary, he made a class presentation on stuttering, and he talked to some of his friends about his stutter. But he said some people still finish his sentences for him.

"They probably think I need help," he said, but people should "just be patient with us."

A version of this story appeared in the November 4, 2015 issue of Seven Days.

• Dr. Barry Guitar

An Expert Voice

Dr. Barry Guitar is a professor of communication sciences and disorders and psychological science at the University of Vermont. He's an expert in the Lidcombe method, a stuttering treatment for children, which involves parents monitoring a child's speech, offering praise for fluent speech and giving feedback on stuttered speech. Guitar is the recipient of the 2015 George V. Kidder Outstanding Faculty Award by the UVM Alumni Association.

Kids VT: What might a parent of a child who stutters notice about their child's behavior?

Barry Guitar: Many kids who stutter, stutter at home. If the parent is seeing the child stuttering and showing frustration or shame and/or if the child seems to be talking less, that would be a very important sign.

KVT: What are some of the typical worries of parents of children who stutter?

BG: They're concerned that their child won't be able to do well in school if he or she keeps to him or herself and doesn't engage with the classroom activities and doesn't make friends. They're worried about the child's future in terms of occupation, not getting married and having kids.

KVT: What do you say to them?

BG: The only thing that holds the kid back is the kid's feelings about his or her stuttering, not the physical manifestation of it. Parents need to realize this is not a permanent physical disability. It's something that can be improved so that the stuttering doesn't get in the way. The child may always have a little bit of stuttering, but that's fine.

KVT: What do parents need to know when they look for a speech-language pathologist for their school-age child who stutters?

BG: The person needs to be an expert in stuttering. If they're not an expert now, they need to go to a workshop or some other training so that they can get good at it. The Stuttering Foundation of America puts on a lot of workshops for people who work with school-age kids. And then there are also books. There are also really good summer camps for kids who stutter. [Guitar recommends Camp SAY in North Carolina.]

KVT: Are there specific stuttering strategies that apply to school-age kids?

BG: There are two major things. One is to have them not feel so ashamed of it. To do that, you do a lot of talking, drawing and sharing. You go back and forth between talking about it and doing things, like pretend stutters, in which you feel in control. And then you don't feel afraid of it anymore. The other thing that you do is you don't try to be completely fluent. You just learn to stay in the stutter. The important thing is not to run away from it.

KVT: What can teachers do to help a child in their class who stutters?

BG: I always try to meet with the teacher and the child. If the child is really stuck, the teacher can make a nice comment like "Take as much time as you need." The teacher can intervene with other kids' teasing. One of best things I found is if the teacher creates a situation where everybody in class has to make a presentation on a specific topic and the kid who stutters can make a presentation about his or her stuttering.

Find information about the Burlington chapter of the National Stuttering Association here.