Stutterers ‘not alone in the world’

Kaja Bajc came to San Diego five years ago from Slovenia.

Stuttering since she was five years old, she said was in a very dark place with her stuttering, would not talk about it, and did a lot to hide it. But after 20 years, she heard about the National Stuttering Association when she arrived here, and it changed her outlook on life forever.

Bajc said after joining the NSA San Diego Chapter, she found that stuttering is not as stigmatized as much here as much as it is in her home country. Now, Bajc leads the San Diego Chapter, advocating and bringing awareness.

“I met a community of people who stutter who realize that they are not alone in the world, and I do not feel isolated anymore,” she said. “After about two years of attending meetings, my whole outlook about stuttering changed. It is probably the best thing I ever did for myself.”

International Stuttering Awareness day is Oct. 22. Now in its sixteenth year, the day is intended to raise public awareness of stuttering, which affects one percent of the world’s population, according to westutter.org. Some famous people who stutter are President Joe Biden, actor Emily Blunt, actor James Earl Jones, NBA all star Kenyon Martin, country singer/songwriter Mel Tillis, and legendary actress Marilyn Monroe.

Alexandra Haynes, a speech-language pathologist, Sharp Rees-Steely Medical Centers said stuttering is the layman’s term for a fluency disorder.

“This refers to how our muscles coordinate together to make speech,” she said. “When we are talking, we must have our lungs, our larynx, our vocal cords, out lips, tongue, teeth, and facial muscles all work together simultaneously for our speech to come out clear so that we can be understood by other people. This happens rapidly. We have a thought that comes into our head, and we want to express ourselves and have the words come out. Our muscles have to coordinate together at the same time for this process to take place.”

Haynes said a developmentally fluency disorder is when a child develops disfluencies and stuttering while learning how to speak. Sometimes those disfluencies go away, and sometimes they persist into adulthood. An acquired disfluency disorder is a disruption in speech patterns as the result of a brain injury, a stroke, or a neurodegenerative disease such as Parkinson’s disease.

Haynes said a fluency disorder has nothing to do with intelligence.

“If you do stutter, if you do have a disfluency disorder, it is not linked to your cognitive abilities or your intelligence,” she said. “Just because you have trouble coordinating your speech pattern, it is much like a person who has trouble moving around or is a little clumsy. I think one of the things that is important to understand for Stuttering Awareness Day, is that just because you are having trouble talking, does not mean that you do not have things that you want to share, or that you do not have anything to say.”

There are a few things that can come for people to stutter, said Haynes. People can experience a block, where speech stops and they are no longer able to move over, leaving long gaps between words without anything being said, and that this can be accompanied with tension or behaviors that look like a facial tick, or turning their face a little.

“Another thing that can happen is what we call bumpy speech, where you tend to t-t-t-t-t-t, get stuck on the same sound, or the same word over and over before you can move forward,” she said. “Then there is word repetition or phrase repetition where someone may start a sentence, start it again, and again, and then finish what they have to say. This can be a problem for some people, but it is also indicative of people who are just learning how to talk. Many of our preschoolers who are new to talking and have a lot of new vocabulary coming in, their thoughts are coming in so fast that their little bodies cannot keep up with it. Some people can experience all three.”

Haynes said with children, her first job is to evaluate typical disfluencies that are a part of normal development, versus something that might present a long term problem. She said acquired fluency disorder must be treated differently and that it might never go away.

“For people who do stutter, and it is part of their communication profile, we teach them to monitor their speech, so it comes out easier,” she said. “Many people who stutter have a lot of tension or tightness when they are talking. Figuring out where the tension is coming from and teaching people how to ease into their speech so that they can speak more fluent and experience less block or bumpiness.”

Haynes said learning to be okay with disfluencies, understanding that even though people have bumps in their speech, what they have to say is still valid, and acceptance and confidence is important, even with a communications difference. She said it is important for people to realize that people who stutter are not intellectually challenged, they can do their jobs, and that they have something to say.

“What I find cool and fascinating with people that do stutter, many of them tend to be highly creative,” she said. “Many are highly musical. They can sing, do many different accents. Enjoy being in theater. One thing we do in therapy that is fun, is trying different dialects and different ways of speaking to see if that fluency comes out or eases up on some of the tension some of them experience. When you sing, there is a little slower onset of speech. It is the same mechanism that we use for speaking, but the annotation pattern is different, and the rate slows down. Teaching people to modulate their speech so they can ease through some of those tense moments is really the biggest hurdle.”

Haynes said that there is support and asking for a referral for a speech pathologist is the best first step. “We are experts in motor speech patterns, voicing patterns, learning how language and speech work together,” she said.

Bajc said NSA San Diego has two support groups, one for eight years and up, and another family chapter where families come in with children who stutter. She said the NSA is a nonprofit ran by people who invest much of their free time managing a community of support groups all over the U.S. for people who stutter and led by people that have become comfortable with the fact that they stutter.

Bajc said it is okay to stutter.

“There is nothing wrong with people who stutter. It is the way that we talk, and it is not something that a person should get rid of. A small percentage of people continue to stutter into adulthood. There are many kids who grow out of it, but many do not,” she said.

She said there are many patterns of stuttering and that it can change day to day.

“You can be fluent in one situation, and you can stutter in other situations. It is like seasons, and it varies from person to person,” she said. “People who stutter into adulthood learn to anticipate it, so we rethink what we are going to say in our mind. This pushes people to avoid stuttering by changing or switching words or breathing patterns, avoiding certain words or situations, just to pass as fluent people. That is the consequences of stigmatizing stuttering. Trying to pass as fluent people.”

Bajc said there is no overcoming stuttering, but people can learn to communicate effectively, not hiding their stuttering, and be comfortable with it.

“The goal is not about becoming fluent, it is living well with or without fluency,” she said.

But Bajc said growing up with disfluencies can cause anxiety, avoidance, shame, guilt, loss of control, fear, most of which is hidden from the outside world, and makes people who live with stuttering and view it as a negative thing, extremely hard to communicate in the world, and live in the world.

“People tend to push you to be fluent rather than accepting that you stutter,” she said. “It is much more complicated than most of the public knows. It is hard to grow up accepting stuttering when you spend all your life being laughed at, bullied, and teased about the way you speak. This is something that everyone that grows up stuttering shares. It is very tough.”

Bajc said it is important to be a good listener when they encounter a person who stutters.

“Most important, focus on what they are saying, not how they are saying it,” she said. “Make eye contact and be engaged in the conversation. Be patient with whomever you are talking to. If you see them struggling, give them time. Do not try and finish their word or sentence. Be a good listener, that is extremely important.”

To learn more about the NSA visit www.westutter.org.

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Source: East County Californian