Lessons From Within the Stuttering Community: Perspective of a Teenager and His Parent

About the presenters: Jay Castleberry is a seventeen year old senior at Edwardville High School in Edwardsville, Illinois. He credits his ability to manage his stuttering to The National Stuttering Association and the Successful Stuttering Management Program at Eastern Washington University. He is a varsity golfer who drives an old, safe Volvo. Who ever said life was perfect?

Susan Short Castleberry is Jay's mother. She is a licensed certified speech-language pathologist who is a member of the National Stuttering Association and Friends: The Association of Young People who Stutter. She facilitated a parent group discussing the topic of "Recovery" at the 2000 NSA convention, and she is Chair of the Parent Advocacy Committee for Friends. She organized and facilitated the 2000 Friend's St.Louis Youth Day.

Lessons from Within the Stuttering Community:  Perspective of a Teenager and his Parent"

by Jay Castleberry and Susan Short Castleberry
from Missouri, USA

(The authors’ comments alternate throughout this paper; Jay’s are italicized)

A few years ago, when our sons were twelve or thirteen, I sat with my friend Lee and we voiced our fears concerning the effect of stuttering in the lives of our boys. Our prime concern was that these boys would have to "bottom out" before they could rise from the difficulty of stuttering and heal to become happy and productive. We had heard adult stutterers say this; that they had to reach bottom before they sought desperately for help.

It is tough for a parent to anticipate this level of sadness, frustration, anger, guilt, and shame. The question we had for one another that day was how do we stop the downward spiral? How do we create a balance in the lives of our children so that they don’t become consumed by stuttering?

If you are the parent of child who stutters you may be having, or have had these same fears. If you are a clinician, you may have said that this is what you expect of your young client who stutters. A clinician friend of mine once suggested to me that my son was "in denial" when we discussed his lack of interest in therapy. She missed the point. In Jay’s view, therapy in the "little room" had little value. His stuttering was part of his world on a much larger scale. His "therapy room" was his life at home, at school, and everywhere else. He wasn’t in denial of his stuttering; he was living with it, coping with it, and adjusting to it, every waking hour.

What Lee and I were really talking about that day was therapy and recovery. In our desire to prevent stuttering from becoming a disabling state for our boys, we began to talk about the steps we could take that might change the outcome for them. We recognized that our communication of support and acceptance of stuttering was an initial step. We were beginning to understand, also, that the boys’ stuttering was their own and that while we could influence the journey, we could not take stuttering, or it’s effect, away. We felt limited in our ability to protect our children or to make it better or easier for them.

An answer to our concerns was surrounding us. We had met and begun to share our stories at the 1994 convention of the National Stuttering Project.

From a parent’s point of view, healing was beginning. Our experiences that year and in subsequent years enlightened, educated, desensitized, and empowered us. More importantly, the impact of our involvement in the stuttering community was central to the process of positive growth in our children. They did not "bottom out". For these boys, recovery found a foundation in group process and the self-help movement.

My name is Jay Castleberry. I am a 17-year-old stutterer. I have been a member of the National Stuttering Association for the past seven years. I was eleven at my first convention in Cleveland. After six conventions, these are my reflections.

Cleveland-1994: I was eleven years old at my first convention. At the time the National Stuttering Project (changed to The National Stuttering Association in 1999) was geared toward the adult stutterer, with little support for the child who stutters. I was still very young and insecure about my stuttering. For these reasons, I spent most of the convention touring Cleveland. I went to the zoo, Sea World, and a baseball game. I remember the game because rain came pouring down. We were up in the nosebleed section but still got soaked. We decided to call it a night. As for the actual convention, I can really only recall two other kids who stuttered, Michael and Jonathon. I met them on the last day of the convention during the youth activities. They were playing a game of handball in one of the side doorways. I joined them and we hit it off. That set the stage for the following year.

Family activities were limited to one day at this first convention, and while Jay and his sister and father were sightseeing, I was able to attend sessions and enjoy the convention experience. I had never been in a group of people who were so ready and willing to talk to a stranger. I had certainly never heard so many ways to stutter. I recall Jay making comments on the way home about HOW different people stuttered. This was a first. Not only were we talking about stuttering, and discussing the ways that stuttering can vary, but he had initiated the conversation. Jay even commented that at one time he stuttered in a way similar to that of one of the adult stutterers we had met, but that his own stuttering was different now. Jay had begun to evaluate his own stuttering and to make comparisons. He was becoming more honest and observant about his speech. Stuttering as a physical phenomenon was easier to talk about. Jay’s younger sister was less than impressed by all this stuttering. Her remark to me was something along the lines of "I just don’t know what the big deal is!"

San Diego-1995: I arrived in San Diego with great expectations for my second convention. This year, I had hope for new friends and a newfound security in myself as a stutterer. I met Michael Sugarman, one of the co-founders of the NSP, on the first day. All I can say is Michael is an extraordinary guy. The numbers of kids and teens seemed to be growing. Annie Bradberry, the director of the NSP, proved to be my greatest new acquaintance. There were others, of course. I met Matt and Kevin , each about my age. I met others, but those were the only new kids who would become "veteran" convention-goers. I went to my first workshop that year, a youth discussion group. We talked about therapy and things that seemed so unimportant to a twelve year old. I guess that’s why it was my only workshop that year. On the Friday night, I did a tour of the San Diego Zoo. My mother and I went with another family. It was a good time. The closing ceremonies were on Saturday. We all got in a big circle and held hands while "Wind Beneath My Wings" was played.

Arguably, for Jay, the most important aspect of these meetings was social; he was having a whole lot of fun with other boys and girls who also stuttered. He had looked forward to spending time with friends from the previous year and to making new friends. Although Jay only spent the first few hours of the convention with me, I enjoyed camaraderie with him that was based on our mutual involvement with his stuttering. It was not long, however, before he began to "run with the pack" of young teens who were present. I felt gratified that his attachment to these kids was so easily accomplished. It was natural to feel comfortable with stuttering in this place where stuttering was more typical than not stuttering. While Jay was busy making friendships that would prove to be lasting, I was doing the same with other parents I met at parent discussion groups. He and I both felt the relief that accompanies knowing there are others experiencing the same feelings. On the way home we shared post-convention high spirits, talking about people we had met and what we had done. We talked stuttering. This "wind-down" time became something I have enjoyed with my son after every convention.

Denver-1996: Denver was awesome. The hotel was downtown, a short walk to activities. By then our teen contingent had grown to the size where the adults began calling us the "brat pack". Ashley made her first appearance at the convention, as did Kelly and Ayesha, ’Nash, and Jeff. I remember walking the streets of Denver, swimming in the pool, and staying up all night in the coffee shop next door. My fondest memory, however, is cramming seven teens into a taxi and going to the amusement park during a Friday tour. We must have ridden every ride three times. We stayed until closing and walked back. We were on such a high that we felt like we could do anything. We attended youth workshops and goofed off whenever we could. We were still kids, after all. I remember going to the annual auction and dance that year. I didn’t know what I was missing until I finally experienced it. What a party! 1996 was the first year I felt I did not want to leave the convention and my friends. The NSP now had a youth contingent and a youth "mini-convention".

Jay’s pride in his NSP involvement was due at least in part to the powerful feelings of acceptance he felt. NSP adults gave the kids attention, respect and validation. It was OK to stutter. I suspect he was speaking without thinking about his stuttering for perhaps the first time. Since everyone else was also stuttering it was easier to forget about it, or at least to accept that for the moment it was happening. I remember one significant part of our debriefing discussion during the flight home. The teens had, at one point during the Youth activities, formed a group sitting inside a circle of adults, parents and professionals. After watching the Stuttering Foundation of America video "Do You Stutter: Straight Talk for Teens", most of the teens had joined in a discussion. Jay had not talked. He looked at the floor, seemingly very uncomfortable about participating in a public discussion. He had also not volunteered for the Open Mic session at the closing of the youth activities. Open Mic is when convention goers have the opportunity to talk at a podium before the group. His comment to me later was that he would not feel comfortable talking in front of a group even if he was fluent.

Buffalo-1997: On the plane flight to Buffalo, we had the pleasure off sitting a row in front of Russ Hicks and. Joseph Diaz. We talked the entire flight (actually stuttered the entire flight). We became great friends just from that one time. The flight affirmed my belief that this year would rock. The hotel was wonderful. The pool was great and the meeting rooms were great, not to mention my friends had their own rooms. Newcomers to the convention included Brad, Caryn, Kim, and Zach. Our "clique" was now numbering about 15. Andy Floyd presented a teen workshop that I really enjoyed. But I had the most fun staying up late with the one and only Steve Hood. We must have talked until dawn one night outside the hotel. It was awesome. I was also finally starting to become more a part of the convention even though I still wasn’t vocal, yet.

Jay’s circle of NSP friends was now including speech pathologists. Some of these adults stutter, others do not. He had, as a younger child, held the profession in low regard. Now, he was forming friendships with some of the best in the country. He continued to struggle with his feelings of self as a stutterer, but plenty of other people, teens and adults alike, were telling him that his value as a person included who he was as a person who stutters.

SSMP-1998: I took a break from the NSP in 1998. I had my reasons, though. I was accepted at the Successful Stuttering Management Program at Eastern Washington University. It was the greatest therapy experience of my life. I gained confidence in myself and my speech (my parents can attest to this, as I never shut up). I am in touch with my fellow classmates. The skills I learned are more than enough to keep me going.

Tacoma-1999: I was really excited about the 1999 convention. The NSP became the NSA. One of my favorite people, Julie LaFleur, was in charge. I met her at SSMP. Tacoma was like previous conventions in that there were many new people and many "veterans." Brad had his car, so much of our time was spent cruising around the city. I did attend many workshops that year. Maggie Hansen, Liz Mendez, Michael Caggiano and Peter Reitzes and Scott Yabroff all put on workshops that I attended. With my success at the SSMP, I was vocal, and I mean VOCAL. I talked to whomever I wanted, when I wanted. It was a great feeling.

Jay was participating in workshops specifically designed for teenagers. Young adult and teen stutterers facilitated many of these. The groups were conducive to on-going dialogue about stuttering. Themes included being open about stuttering, stopping avoidance behaviors and becoming more honest and responsible for self. The social scene was going on stronger than ever with the involvement of more teenagers, and it was continuing in facilitated group settings. Jay was talking openly about his stuttering and other people’s stuttering. He also volunteered for his first Open Mic at the youth program closing ceremony, standing before the group of children, adults, and teen peers to say what he wanted to say.

Chicago-2000: Chicago was the most exhausting and exhilarating convention ever. I started working the January before the convention. I flew to the planning meetings and was in constant contact with Nina Reardon. I was a Teen Liaison, and Nina was in charge of the youth activities. She put us to work and I felt it. But, the satisfaction I got out of Chicago cannot be measured. I tried my best to be a role model. Being 17, I felt it was my last duty before I handed the teens off to new mentors. I attended more adult workshops then ever, including great ones by Lee Reeves and John Harrison. I found myself speaking to large groups almost more than I cared for. I talked at the Family Orientation, the Awards Luncheon, the Family Luncheon, the Family Closing, and to 600 people at the Closing Ceremonies. In addition, I did manage to have a lot of fun. Our most diverse teenage group was present in Chicago. The "veteran" NSAers was joined by many newcomers including Katie, Jay, Maurice, and many others who brought our teen contingent to over 20. We rode the "L" to downtown. We snuck into the Pool at night, and got caught. All in all, Chicago was the pinnacle of my NSA experience. I was a complete member. I attended workshops. I mentored the younger kids, and I talked with parents. I worked to make Chicago the best ever, and I enjoyed every person I came in contact with.

Jay’s independence from me was complete, with the exception of the final hotel bill of course. I did not go to youth program sessions with him. Rather, I went to see him talk with kids, parents and other teens. His sense of responsibility to NSP/A had resulted in increased participation and a desire to give back to the group. As I watched him work behind the scenes and before groups, I saw him talk with adults and children, parents and speech pathologists. Everything he did included speech, sometimes more stuttered, sometimes less. The connections he made with all these people were accomplished through language and speaking. These connections were realized because of experiences Jay shared with other members of the community: people living with stuttering.

Today, there are options and opportunities available to members of the stuttering community. The National Stuttering Association and Friends: The Association of Young People Who Stutter support families with children who stutter. Friends and NSA each hold a yearly national convention, and each support Youth Day events around the country during the year. These workshops and conferences support the family, children and parents, recognizing that we are all living with stuttering.

Stuttering will always be a part of my life, but it will never be the whole of my life. The NSA gave me the opportunity to grow and mature in a safe, wonderful environment where stuttering is normal. Everybody I have met through the NSA has changed my life for the better. Words cannot express the gratitude I have for the changes that have resulted from my involvement with the stuttering community.

August 21, 2000