Wednesday, March 10, 1999

Stutterers speak out


Having neither cause nor cure, support group recommends heavy doses of confidence and self-esteem

BY SUE MacDONALD
The Cincinnati Enquirer

[scharstein]
Tom Scharstein is co-leader of the Northern Ky. chapter of the National Stuttering Project. His daughter, Loren, also uses the support group.
(Jeff Swinger photo)
| ZOOM |
        He remembers being teased. He remembers being asked his name and standing there, eyes closed, not breathing, trying to get the simple sounds out of his mouth.

        “T- T- T- T- Tom,” he eventually would blurt out. Sometimes, by the time Tom Scharstein formed the sound of his own name, the person addressing him had walked away out of embarrassment, frustration or impatience.

        After years of speech therapy that had little effect, Mr. Scharstein finally found that building his self-confidence and dealing openly with his occasional-but-worsening stuttering were the best ways to face up to his challenge.

        Like other stutterers, he's discovered the importance of sharing information, anecdotes, coping tips and friendship with other stutterers, who now have two support groups in the Tristate.

        Mr. Scharstein (pronounced shar'-stine) is a co-leader of the Northern Kentucky chapter of the National Stuttering Project (NSP), recently formed at St. Elizabeth Medical Center South in Edgewood. A similar group meets monthly at Mercy Hospital Fairfield.

RESOURCES
  For information about stuttering, contact:
  • The National Stuttering Project has two local chapters. A Cincinnati group meets at 7 p.m. the third Monday of the month at Mercy Hospital Fairfield. The Northern Kentucky Chapter meets 7 p.m. the last Monday of each month at St. Elizabeth Medical Center South in Edgewood. (606) 491-6952, (606) 363-8422 or St. Elizabeth Medical Center, 578-5740.
  • National Stuttering Foundation, a non-profit organization based in Memphis, Tenn., offers information, support and referrals at (800) 992-9392 or at www.stutterSFA.org.
  • American Speech-Language Hearing Association, based in Rockville, Md., has a consumer help line at (800) 638-8255.
  • Cincinnati Speech & Hearing Center, based in Avondale, offers testing and services for speech and hearing problems, 221-0527.
  • Northern Kentucky Easter Seals Center, 212 Levassor Ave., Covington, also offers testing and services for speech and hearing problems. 491-1171.
  • Look under “speech disorders-corrective training” in the yellow pages for other resources/specialists.
        Because no definitive cause or cure for stuttering exists, creating ties with other stutterers is often an effective tool for tackling the problem, says Dana Easterling, speech-language pathologist at St. Elizabeth Medical Center.

        And specialists are finding that the earlier treatment and intervention are started, the better the prognosis for normal or near-normal speech.

        Stuttering as a child, according to Mr. Scharstein, was a “living hell.” He was mocked and mimicked. He was stung when a teacher laughed at him in class. Each setback made him feel worse about himself, and worsened the stuttering.

        Stuttering is often misunderstood.

        “Kids can be very cruel if someone's different — if they're heavy, if they're short, if they have some sort of "defect' that makes them different,” says Mr. Scharstein, 33, construction manager for Arlinghaus Builders in Northern Kentucky. “My main reason for being involved in the National Stuttering Project (NSP) is to ensure that stuttering youth of today have available to them what I didn't have.”

        Mr. Scharstein's 11-year-old daughter, Loren, a sixth-grader at Woodland Middle School in Taylor Mill, attends the NSP meetings and so does an 8-year-old child.

        Loren was about 4 when she began stuttering, Mr. Scharstein remembers, “and it was devastating to me as a parent because I knew what she was going to go through. It was absolutely heart-breaking, but I willed that I would build up her confidence and self-esteem to the point where she could feel good about it and deal with anything.”

Runs in families
        About 3 million Americans stutter, according to NSP estimates.

        Experts know it runs in families, meaning it has a genetic basis. Some people stutter because of brain injury or stroke. It's 4-6 times more common in boys than girls.

        “There are a lot of theories about stuttering,” Ms. Easterling says. “Some feel it's a problem with breathing. Some feel it's a problem with articulation. Some feel it's an emotional or personality problem. Some feel it's an anxiety-based problem, so there's not a reason or a cure at this point for stuttering.”

        New theories hold that signals from the right and left hemispheres of the brain get mixed up, or that stuttering tendencies are inherited, making some people more likely to stutter than others.

        Stutterers are often ashamed, but many famous people have overcome stuttering: actor James Earl Jones, singer Carly Simon, actress Marilyn Monroe, the Roman emperor Claudius, authors Henry James, Lewis Carroll and John Updike, TV newsman John Stossel, former Miami University basketball star Ron Harper, now with the Chicago Bulls, and Annie Glenn, wife of former U.S. Sen. John Glenn.

        “Stuttering is a complex problem,” explains Christy Ludlow, chief of voice and speech at the National Institute on Deafness and Other Communication Disorders. “There's brain development, psycho-social development, speech and language development, genetic risk factors. Those all interact in the puzzle.”

        Because Mr. Scharstein's daughter stutters — and so did two other family members — he figures there's a genetic component at work.

        Stuttering has several components; speaking and language are the most obvious. Stutterers might stumble on words, repeat certain sounds, struggle to get words out or freeze in certain situations (talking on the phone, meeting someone new, speaking in public).

        Stuttering also involves behaviors that the speaker unintentionally develops to try to break the pattern. Stutterers may squint or roll their eyes, twist their faces, stamp their feet and say “um-um-um” to suppress a stutter or move on to the next word.

        Treatments can vary, including speech therapy, breathing exercises, “white noise” devices that mask the stutterer's own voice, or a delayed auditory feedback device, which delays how people hear their own speech in hopes of ignoring the stuttering. All approaches have varying degrees of success.

        Mr. Scharstein became a carpenter after high school because it was a career that did not require tremendous speaking skills. Only when he was offered a management job at Henry Fischer Builders did he accept the challenge and begin to come to grips with the self-esteem issues involved with his stuttering, he says.

        “That was the first time anyone ever showed confidence in me and looked beyond my stuttering,” he says. “I was scared to death, but when I took that risk and moved beyond it, I gained more and more confidence. As my confidence grew, my stuttering improved, which in turn, promoted more confidence. At 23, I discarded my shell and began to live.”

Safe haven
        That confidence carries over into the NSP meetings, which Mr. Scharstein describes as “a safe haven where people can openly express their fears and thoughts and feelings about stuttering among people who understand.

        “I really don't need any support,” he says. “I've made myself happy, but I find the NSP to be full of people just like myself, so it's a big motivating factor for me. I expected to find a group of people sobbing, crying on each other's shoulders and a lot of negativity, and it's just the opposite.”

        He's found that the ordeals of dealing with stuttering as a child made him a stronger adult.

        “Stuttering really honed the qualities that would be important later in life,” he says, citing tolerance, patience, the ability to read body language and individualism. “It doesn't bother me to be alone or unpopular. It doesn't bother me to have to make a choice or decision that's unpopular. All in all, stuttering has had a positive influence on my life. It made me what I am today.

        “It's not how you view stuttering, it's how you view life,” he says. “If I had the choice, no, I wouldn't stutter, but the fact is, I do stutter, and I'll make the most of it.”

Development of stuttering
Do's and don'ts in conversation



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