Speech-Impaired Find the Courage to Be Heard : Speech therapy helps some, but others find that self-help organization can calm their fears.

Monica Fankhauser could fill volumes with the observations and opinions she has kept to herself all her life out of fear that she’d be ridiculed or rejected if she said what was on her mind.

It’s not what she has to say but the way she speaks that makes her feel she’s putting herself on the line every time she engages in conversation.

Fankhauser is one of an estimated 2.5 million Americans who stutter. Since childhood, communicating has been frustrating and stressful for her because her struggle to get words out has set her apart, causing people to focus on her speech impairment rather than on what she has to say.

She has always been extremely shy, but it was shame and embarrassment brought on by the cruel teasing of grade-school classmates that stifled her spontaneity and conditioned her to speak only when she felt she had to.

In high school, her fear of appearing foolish whenever she stuttered kept her from hanging out with her peers, dating and participating in class discussions. And as an adult, the 29-year-old Orange resident still finds herself shying away from stressful situations.

However, there’s been a big change in Fankhauser as she has acknowledged the pervasive impact stuttering has had on her life. She now realizes it has hindered her in her career as well as her relationships, keeping her from going after what she wants, standing up for herself and letting others get to know her.

After years of suffering in silence, Fankhauser has decided she wants to be heard, even if it means taking the risk that people will respond to her stuttering in a hurtful way--by staring, looking away, getting impatient or callously imitating her.

“It’s demoralizing to not be able to say what’s on your mind,” she said, admitting that, throughout her life, she’s battled depression because she felt she couldn’t be herself.

She said her stuttering is more apparent today because she no longer avoids words that are difficult for her to say--including her own last name.

Her determination to build up the courage to express herself in spite of her stuttering prompted Fankhauser to join the National Stuttering Project, a nonprofit organization that sponsors 75 self-help groups across the country. Fankhauser attends the Orange County support group meetings from 7 to 9 p.m. on the second Thursday of each month at Western Medical Center in Santa Ana. (For information, call (714) 786-9010 days or (714) 838-1444 nights.)

In literature provided by the National Stuttering Project, Fankhauser learned that although the cause of stuttering is unknown, researchers have found that it runs in families, it’s probably linked in some way to neurological development, and it becomes more severe as a result of anxiety and stress.

When Fankhauser first joined the support group nearly a year ago, she was so anxious that she dreaded having to speak, even though she knew she was among people who were sure to be patient and compassionate. However, it didn’t take long for her to relax during discussions on topics ranging from personal problems to global issues.

“Now I can’t wait until it’s my turn to speak,” said Fankhauser, a dietitian who does consulting work for hospitals and hopes to someday lead seminars. “I really pushed myself to keep going to meetings because I thought, ‘If I can’t stutter in front of other people who stutter, I’ll never get over this.’ ”

Richard Brauer, a Tustin physician who serves as president of the local support group, said the monthly meetings provide a rare opportunity for people who stutter to speak freely, without having to worry about how others will react.

“Some people who stutter get by in life by hardly talking at all,” he said.

Jeanna Riley, a psychologist and speech therapist who is director of Rileys Speech and Language Institute in Tustin, said many of those who have come to her for help have gone to great lengths to hide their stuttering from others.

“I have seen attractive, intelligent young men who won’t associate with peers--men or women--because of the fear of looking dumb. They avoid it at all costs,” Riley said.

Some of her clients have admitted that they’ve never discussed their stuttering problem with their spouse and even managed to hide it from their parents when they were growing up, she added.

“You can imagine the energy that goes into keeping it a secret,” she said. “It really is a prison they live in.”

In therapy, she encourages them to “let go of the fear of stuttering and get a life.”

Of course, she also teaches clients techniques to help them speak more fluently. But she offers psychological counseling as well as speech therapy, because she wants adults who find they are unable to stop stuttering to overcome the self-consciousness that causes them to retreat from human contact.

Riley said 40% of the adults who come to her for therapy make little or no progress and are likely to have a chronic stuttering problem throughout their lives. The rest either conquer stuttering or become so fluent that they aren’t disturbed by occasional relapses.

Riley’s husband, Glyndon, a Cal State Fullerton professor who specializes in communication disorders, said most adults who stutter have done so since early childhood, and that the incidence of chronic, lifelong stuttering could be reduced by as much as 80% if therapy were provided at the preschool-age level.

He recently was awarded a $700,000 grant from the National Institutes of Health for a three-year study that will involve 60 children, ages 3 to 9, in an effort to evaluate the effectiveness of stuttering therapy. The study will help focus attention on the need for early intervention, he said, adding that he will soon be looking for children to participate in his research.

Jeanna Riley said most of the children under 8 who come to her for speech therapy are eventually able to overcome stuttering “to the point where it isn’t a factor in their lives.”

That’s Brauer’s goal, and the 64-year-old support group president has been working toward it most of his life, with intermittent help from speech therapists. Brauer, who managed to keep the conversation flowing smoothly during an interview at his office, said therapy is a “long, slow, gradual process” and that it takes intense concentration to control his stuttering, but he feels he’s making progress.

Brauer, whose mother stuttered when she was under stress, began having speech difficulties when he was 5. He understands how difficult it is for people like Monica Fankhauser to seek help because he also spent a number of years trying to hide his stuttering.

As a young man, it was particularly difficult for him to speak to young women, and throughout high school and college, he hardly dated. When he finally started going out with someone he met during medical school, he recorded an introduction and played it over the phone whenever he called her because he was afraid it would take him too long to identify himself.

Thirty-seven years ago, he married Beverly, who waited patiently during a conspicuous pause in their wedding ceremony as Brauer struggled to say, “I do.”

“People thought he wasn’t sure he wanted to go through with it,” Beverly said. “We made a joke of it.”

She sensed that her husband was uncomfortable talking about his stuttering, so she never introduced the subject, and neither did he. Brauer didn’t discuss it with his four children either because “I was embarrassed about it.”

His stuttering apparently hasn’t interfered with his medical practice; with patients, he’s managed to control it most of the time by rephrasing sentences in his mind to avoid troublesome words. But that effort is exhausting, and at home, he depends on his wife to handle day-to-day tasks involving verbal communication.

She admitted that she has sometimes resented that.

“It would have been far better if it had been openly discussed,” she said.

Brauer agrees, and he is relieved that his involvement in the National Stuttering Project in recent years has given him the confidence to acknowledge his speech impairment among his loved ones--and to stop relying on his wife to speak for him.

Fankhauser, whose speech became increasingly fluent as she gradually relaxed during a two-hour interview, said she is also gaining self-assurance through the support group.

An attractive, single woman with a quiet, self-possessed manner that doesn’t break down when her speech falters, Fankhauser recently began dating a man she met in the group. The fact that they both stutter “puts us at ease. We don’t feel self-conscious about it,” she said.

Until recently, she wasn’t able to initiate contact with the men she found most appealing.

“I tended to go out with guys who were very needy because I didn’t think a guy who had it all together would accept stuttering,” she said. “There were guys I looked up to, but I would never let them know I was interested. I wasn’t going to take the chance of being rejected.”

However, after ending an abusive relationship about two years ago, she asked herself, “What’s wrong with me? Why am I choosing these guys?” She resolved to be more selective in her dating life and has since had healthier, more satisfying relationships.

Although Fankhauser is seeing a speech therapist regularly, she doesn’t expect to ever conquer stuttering.

“I would just like to get to the point where it doesn’t bother me, where I could stutter and not even think about it,” she said. “It’s really hard to not care what other people think. I still have to consciously reassure myself that most people aren’t going to reject me because of my speech.”