About the presenter: John A. Tetnowski, Ph.D., is an assistant professor at the University of Louisiana at Lafayette, where he teaches graduate and undergraduate courses in fluency disorders and supervises a clinical caseload of approximately 15 people who stutter. He has published papers in the areas of stuttering, its relationship to early language development, diagnosis, and qualitative methodologies. He has earned the Certificate of Specialty Recognition in Fluency Disorders from the American Speech-Language-Hearing Association. M. is a 15 year old person who stutters. She attends the Academy of Sacred Heart Academy in Grand Coteau, Louisiana. M. currently attends stuttering therapy at the University of Louisiana at Lafayette's Speech and Hearing Clinic. She enjoys soccer and volleyball. In the future, M. would like to pursue a career in politics.


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Finding your own way: A teenager's self-realization of stuttering through a personal journal

by John Tetnowski and M.
from Louisiana, USA

Journal keeping has been a method for dealing with personal feelings and covert responses to stuttering. Some authors believe that children who stutter know considerably more about their own speech and stuttering than anyone else (e.g., Biagini & Butler, 1999). At least one single subject experiment (Moore & Perkins, 1990), and a few experimental designs (e.g., Tetnowski & Schagen, 2001) have hypothesized that the person who stutters (PWS) is reasonably capable of determining when stuttering occurs. That is, personal insight can be a valid measure of stuttering.

Despite many authors' and clinicians' feelings about personal insight into stuttering, a limited amount of accounts have described how a person who stutters comes to realize their difficulty with speaking, and what they do about it. Checklists have been devised that help the person who stutters develop insights into feelings and other covert symptoms about stuttering (e.g., DeNil & Brutten, 1991; Johnson, Darley, & Spriestersbach, 1963), but these scales have traditionally been used only after the person in question has already been referred for a speech evaluation or therapy. Most people come to stuttering evaluations or therapy through school system screenings, teacher referral, or on the advice of someone else. Finding the correct resource for someone that does not follow any of these traditional referral techniques (for whatever the reason) will be addressed. This paper looks at a single case of a teenager, who finds her own way to get help with her stuttering. The fact that her overt symptoms were quite mild, served as a hindrance to her "diagnosis" as a person who stutters, and finding the resources that she needed. This paper further describes a particular technique that can assist in the searching and decision-making process that a person goes through before they seek professional advice. Individuals, such as the second author of this paper, may think that they stutter (or have some other fluency problem) and need to know how severe the problem is, if it can be helped, and where they can get reliable advice. A hindrance to seeking advice can be the negative view of stuttering that still exists today (be it real or not).

The following "case-study" is a single case report of a 15-year old person who stutters and how she came to terms with her stuttering and how she found the help that she needed.

Subject

M. is currently 15 years old and lives with her mother in South Louisiana. She attends a private, Catholic school, and is a good student, receiving "A"s and "B"s on a regular basis. M. plays on the school's soccer team and also enjoys playing volleyball. M. claims that she has always stuttered (since she was 4 or 5 years old) however, her symptoms were quite mild (or not present) to most observers.

M. has aspirations of pursuing a career in politics. In September of 2000, she was nominated to attend the National Youth Leaders Conference in Washington, D.C. At this point, she recalls starting to really worry about her stuttering (and her future).

Prior to that time, she has never regularly attended speech-language pathology services, nor has she ever been evaluated for stuttering. An interview with M.'s mother (almost 8 months later) revealed that neither her parents, nor her teachers were ever really concerned (or even noticed) her struggles with speaking. As part of an English class project, M. started keeping a personal reflection journal. The purpose of keeping the journal was to help the student track and analyze their own thoughts and insights about any aspect of their life. Any topic of concern was to be written about in their journal. The teacher would collect the journals and review them periodically returning them with minor comments about writing style and content of the journal.

M.'s first journal entry about stuttering came in early September after being nominated to attend the conference in Washington, D.C. Her journal entry expressed extreme joy about her potential involvement in a political conference, but also contained the following comment about her speech, -- "I'm very worried about it all. What if I'm 40 years old and still can't stand up in front of anybody and talk without stuttering?" Another journal entry on 09-03-00 states her concern, but lack of information on where to turn. "It really bothers me, but I don't know what I can do." The following entry alludes to her negative feelings about stuttering: "I'm embarrassed to go to a speech therapist, but I know that I need it". M. also describes the isolating effects of stuttering with the following entry, "Considering I'm the only one in the school with this problem, I feel like such an outcast, and not as good as everyone else."

M. kept her stuttering to herself, but often worried about what her friends were thinking. One early journal entry states, "My friends have never said anything about it, but I know if I were them, it would aggravate me talking to a girl that can barely finish her sentence." Again, she alludes to the negative way that others may view her stuttering, "I'm scared to talk to anyone because I don't want them to think I'm weird or strange."

As a teenager, M. keeps an active social life, but also spends a great deal of time on the internet. M.'s mother would question her about how much time she could spend on the internet, and a journal entry gives some insight into this issue. In early September, M. writes, "When my mom yells at me for being on line too much, I just want to yell back at her because it's easier to have a conversation without speaking. . ., I feel normal when I'm typing. . . ." Many people who stutter may be reminded of a commercial for an insurance company that was aired on television several years ago, and expressed a similar sentiment for a preference of typing on a computer over oral communication.

Despite her mild stuttering, M. reveals her sensitivity to stuttering in the following journal entry, "People can say whatever else they want to about me, but I get extremely defensive the minute anyone brings up the subject of stuttering. I'm almost at the point of mental breakdown." It is surprising to most who know M. that she would have such a severe reaction. Her teacher's reaction to this statement (noted as a comment from the teacher in her journal) near the end of September, 2000 stated, "You know what else? Never once did I ever think you had this problem (stuttering)."

It appears as if M. had a particularly difficult time with her speech near the beginning of the academic year. A journal entry dated, 09-10-00, stated, "It's uncomprehendable (sic) what I would do to get my speech corrected." Later that month, M. writes about her fears of stuttering, "It's starting to frighten me, and I know that I need help, but I don't know how to ask for it." And further states, ". . . what scares me is that I don't know why I started doing it." By the end of September, M.'s comments also indicated her use of avoidance behaviors. Her stuttering bothered her so much that she considered switching schools, but knew that she would meet with some resistance, as noted by the following journal entry, "I don't know how to tell my mom that I want to switch schools. It's a very hard thing to talk about. Especially if I can't even finish a sentence without stuttering." M. also writes about her frustration that other people don't recognize her difficulty when stuttering. In this journal entry M. is referring to her mother, by writing, "She just finished yelling at me for not answering the phone and I don't realize how she hasn't noticed my reason for not answering the phone. I know that if my child could barely talk, I would get her help before it became a problem. But mine became a problem so long ago, that I don't even know if it can be "cured". There isn't a medicine or prescription I can take; I've already asked. How can she not see how unhappy it makes me? How can she not realize that it bothers me over anything or anyone else."

M. did not do anything about her stuttering during most of that year, but she states that she thought about it every day. In March of 2001, M. finally realized that there was some possible help. While surfing the internet, she came to the Stuttering Foundation of America's web page, and looked for someone in the area that knew about stuttering. Her reflection journal entry of 3-18-01 read, "I was on line a few days ago because I saw an article in one of my magazines about a website about stuttering. I came across a doctor named John Tetnowski, here in Lafayette. I e-mailed him and got his number for my mom to call, but she gave me this big speech on how she doesn't think I stutter that much and I probably don't need it" . . . . "It made me so frustrated. I'm sitting in front of her asking for help, which I've never done before, and she thinks I don't need it. Does she think I would have brought it up if it didn't bother me?"

Eventually, M. took matters into her own hands. On March 9, 2001, she sent the following e-mail to the first author. "Hello, my name is M. I'm 14, and I stutter. It's starting to become a major problem. My mom yells at me for not answering the phone when it rings, when she doesn't even understand why I don't want to answer it. I use to be able to say common words, such as "hello" with ease, but I don't know what has changed, and why words that I've always been able to say, just won't come out anymore. My mom knows that I stutter, and that I've dealt with the problem since I was little". . . . "It's gotten to the point that I'm embarrassed to talk to my own mother about getting help, and I was just writing to ask for some suggestions, or something I could do myself to try to help."

After responding to M., I (the first author of this paper) was happy to get the following response (some of her response are answers to questions that were asked and an invitation to attend a support group). "Thank you for your support. You have no idea how nice it is to know that help is available. Where will the group meeting be on Monday? I won't be able to come tomorrow, because of a volleyball team I'm on. But, I would like to come the week after. My friends are really good about giving me the time to finish a thought, but we never really talk about the problem, so I don't think they know how much it bothers me. I have talked to one of my teachers about it, Mrs. Melody T. (I thought you might know of her.) But, nothing really came of that either. The only problem with talking to my friends is that I have to end up using a lot of synonyms (1/2 of which they don't understand) in order to try to make it through a sentence. So, it's hard to talk to them. Not because they feel uncomfortable about it, but because it makes me so self-conscious. But, thank you again for your concern and support. And please send the location of the group."

Finally, M. confided in her mother again (who responded very quickly, despite M.'s doubts). On March 16, 2001, M. sent the following e-mail. "Hello, I talked to my Mom about my problem. And she said she would call you. The only problem is that I didn't save your phone number, so if you could send that to me again I would appreciate it. Expect a call soon! Thanks again! You're a big help."

By the way, M.'s mother did call the very next day. After reading M.'s concern over her mother's reaction, I felt that it would be best to schedule a meeting with her mother. I informed M. of this who appeared to show some relief, as noted by the following e-mail of 3-25-01. "Hi, Thanks again for making time to meet with my mom and I. I'm very relieved that this problem is finally getting taken care of. Friday did seem a little better, but nothing drastic" . . . . "Thanks again. See you Friday."

M.'s initial evaluation was scheduled for April 6, 2001. The case history was consistent with her e-mail and journal entries. M. had a significant amount of fear regarding her stuttering, and used many postponement and avoidance techniques. The evaluation revealed stuttering ranged from between 0 and 7% stuttered syllables (SS) across multiple tasks. Stuttering was more prevalent in repetition tasks and reading tasks than more spontaneous tasks. Verification activities and interviews with M. revealed that this was due to word substitution and word avoidance behaviors during more spontaneous tasks, such as monologue and dialogue activities. During the evaluation, it was revealed that stuttering behaviors could be reduced to 0% SS across all speaking activities during fluency induction tasks using rate reduction techniques. This technique was recommended as part of a comprehensive stuttering modification program. M.'s therapy program also included a comprehensive education program for both M. and her family. Therapy began shortly after her evaluation and M. continues to progress towards her goals in therapy.

Summary

The purpose of this paper was to show how a single client dealt with years of stuttering and did not seek or receive help until she took matters into her own hands. We believe that her reflection journal allowed her to express her thoughts clearly enough so that she could finally work out a solution.

People that stutter, such as M., can gain valuable insights into their speech and stuttering through reflection journals. The person writing in the journal simply has to be consistent with writing in their journal and be honest with their thoughts. It is obvious that M.'s observation about her mother's lack of concern about her stuttering turned out to be a false impression. It also turned out that M.'s perception of her speech was extremely accurate (and more severe than most others viewed it). Finally, M.'s journal writing allowed her to keep her concern over stuttering in clear sight. She sought out resources in a logical fashion. Internet resources like the Stuttering Foundation of America (www.stuttersfa.org), the National Stuttering Association (www.nsastutter.org), the Stuttering Homepage (www.mnsu.edu/comdis/kuster/stutter.html) and personal web pages (e.g., www.ucs.louisiana.edu/~jxt1435/tetnowski) devoted to stuttering and linked with the key term "stuttering" can all be wonderful resources to those seeking information and help.

Both authors of this paper hope that people who stutter and are unsure of what to do will read this paper and keep track of their feelings until they make a decision about where to turn. Difficult decisions about stuttering, and other important issues can be effectively tracked through careful entries into a reflection journal.

References

Biagini, J. & Butler, J. (1999) Journal writing for children who stutter. Franklin, MA. Also available on-line. Biagini, J. & Butler, J. (2000) A personal journey to improve the communication skills of the school age child [on-line]. Available: (www.mnsu.edu/comdis/ISAD3/papers/journal/journal.html).

DeNil, L.F., & Brutten, G.J. (1991). Speech-associated attitudes of stuttering and non-stuttering children. Journal of Speech and Hearing Research, 34, 60-66.

Johnson, W., Darley, F., & Spriestersbach, D. (1963). Diagnostic methods in speech pathology. New York: Harper & Row.

Moore, S.E., & Perkins, W.H. (1990). Validity and reliability of authentic and simulated stuttering. Journal of Speech and Hearing Disorders, 55, 383-391.

Tetnowski, J.A., & Schagen, A.M. (2001). A comparison of listener and speaker perception of stuttering events. Journal of Speech-Language Pathology and Audiology, 25, 8-18.


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September 6, 2001