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About the presenter: Lynne Shields is a speech-language pathologist who teaches at Fontbonne University in St. Louis, Missouri. She is a board recognized fluency specialist. Lynne teaches the graduate fluency course at Fontbonne and has a small private practice working with people who stutter. She is grateful to Susan Short for getting her involved in FRIENDS & Family Day. |
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About the presenter: Susan Short is an speech-language pathologist with the Edwardsville, Illinois schools. She is a Board Recognized Fluency Specialist. She is also the parent of a young adult son who stutters. During summer months Susan coordinates the Tune-Up, a refresher therapy program for the Successful Stuttering Management Program at Eastern Washington University. |
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About the presenter: Ro Ostergaard, lives in the northwest suburbs of Chicago. She is married to a person who stutters and has two adult children. Before having children Ro was employed as a Vice-President of Operations for a bank located in the Chicagoland area. She has been deeply involved in her local community by being elected to her neighborhood management board, where she served for two years, serving as a PTO vice-president and president for 4 years, and appointed to serve on both her elementary school School Improvement Team and her school district Learning Leadership Team. Currently she is employed as a hospital Public Relations Associate. Ro has attended every FRIENDS convention since 1998, and was co-chair of the 2001 convention held in Chicago |
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About the presenter: Bill Shannon is an adult who stutters and a graduate of the Successful Stuttering Management Program. Currently, Bill is pursuing a degree in Speech-Language Pathology at CUNY Queens College. Bill is a frequent workshop facilitator for FRIENDS and co-founded the New York Stuttering Project. |
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About the presenter: Lee Caggiano, M.A., CCC-SLP (Board Recognized Fluency Specialist) in private practice treating children, adolescents and adults who stutter. The parent of a son who stutters and co-founder/director of FRIENDS- the Association for Young People Who Stutter. She has developed/ coordinated workshops for children who stutter, families and professionals for the past several years, and presented at local/ national conferences. Caggiano has served on the board of directors of the National Stuttering Project, and chaired the Youth Program. She has taught at LIU and received the 2001 Award for Outstanding Commitment.. |
You can post Questions/comments about the following papers to the authors before October 22, 2004.
FRIENDS & Family Day: One-Day Workshop for Supporting Children Who Stutter & Their Families
by Lynne Shields (Missouri, USA), Ro Ostegard (Illinois, USA), Bill Shannon (New York, USA), Lee Caggiano (New York, USA) and Susan Short (Illinois, USA)
Introduction
This paper describes a one-day workshop model that provides support for children who stutter, their family members, and the speech-language pathologists (SLPs) who work with them. These workshops have been happening around the country for a number of years. Ours is sponsored and supported by FRIENDS: The Association for Young People Who Stutter. The workshop provides activities for preschool through high school children who stutter, their siblings and parents, and SLPs who work with children who stutter. In the St. Louis MO/Edwardsville IL area, FRIENDS has sponsored a spring workshop, "FRIENDS & Family Day", for the past six years. The five authors have been involved in either facilitating or participating in FRIENDS & Family Day, and will share information related to the philosophy of the workshop, a description of workshop activities, and personal perspectives on the event.
Workshop Philosophy & Goals - Lynne Shields
The philosophy behind the family workshop is that family-based support is an important component in helping children manage their stuttering. Family involvement in treatment for children has long been promoted as being important in terms of educating parents and other family members about the nature of stuttering and its impact on children (see Manning, 2001; Shapiro, 1999; Starkweather & Givens, 1997). Family involvement is also critical in promoting the child's ability to talk about their stuttering within the family and with other important people in their lives, and to know that they have support in their efforts to manage and deal with stuttering. Linn & Caruso (1998) point out the significant effect that stuttering has on the development and maintenance of relationships. In their review of studies on the social effects of stuttering, they note that stuttering has a significant impact on families. Openness about stuttering within the family can do much to promote communication and to reduce the feelings of shame and avoidance that are common in children and adults who stutter. Berstein Ratner (2004), in her discussion of a parent-directed treatment program for stuttering, suggests that one factor in the success of the program may be the reliance on open parent-child discussion of the child's fluency, and parental guidance in problem solving relative to the stuttering.
In keeping with these research findings, a workshop format has a number of advantages in promoting open communication. Children who stutter often do not know other peers who also stutter, and, therefore, their families also do not have such contacts. Meeting in a setting where there are many children who stutter of all ages provides an atmosphere where it is easier to open up about the subject for the children, their siblings and their parents. While SLPs have shown an increase in their confidence in treating stuttering in school-age children in recent years, according to Brisk, Healey, & Hux (1997), there are still a high percentage of school clinicians who do not feel confident about their ability to select appropriate treatment goals. Thus, SLPs can also benefit from being in a setting where they can learn about stuttering from experienced peers, and where they can talk to children and parents to gain their perspectives.
To meet these ends, the workshop is designed with the following goals in mind. The first goal is to provide support for all participants. The second goal is to provide a venue where stuttering can be talked about openly and in positive ways by children, parents and SLPs. A third goal is to provide all participants with information regarding the nature of stuttering and ways to manage stuttering. For children who stutter, activities are organized to promote increased self-esteem related to their stuttering and the ability to advocate for themselves. Parents are empowered to advocate for their children and themselves through informational and counseling sessions. Sessions for SLPs include education regarding treatment methods, as well as interactions that allow them to gain insights into the impact stuttering has on children and their families.
In order to give the reader a better understanding of this format, Susan Short and Lee Caggiano will describe typical workshop activities designed for children, parents and SLPs. Ro Ostergaard will present a parent perspective on the workshop. Finally, Bill Shannon will give his perspective as a person who has lived with stuttering.
Children's Activities - Susan Short
Children's activities are a focus of the workshop, providing opportunity for social interaction, desensitization and increased understanding of communication and stuttering. Activities are provided for preschool children, elementary and pre-teen/teen groups. These groups can be mixed and matched, giving older children and teens the chance to mentor younger children. The model that the Friend's and Family Day follows allows for one specialist supervisor to work with SLPs who are responsible for working with each of the age groups. Activities are varied year by year and have included the following:
"Rudy", a play by Marianne Engleken, has roles for children of all ages. After making puppets that represent the characters, children practice the different roles, some of which include stuttered dialogue. Children have been heard to whisper "stutter more!" when coaching another child in dialogue. The play is presented for the adult and teen audience at the end of the workshop day.
Stutter Bugs
Stutter Bugs are tiny stickers of ladybugs, ants, bees, etc. that are awarded children when they stutter voluntarily or for real. Prior to giving the stickers out, children learn to voluntary stutter. The teachers can be teen/adult stutterers and SLPs. We have combined this activity with a walk to a local fast-food restaurant, giving the children a chance to practice their skills in public while ordering a treat. When we first planned this activity we expected the stickers to end up on the kid's arms and shirts, but most of them ended up on faces, giving the appearance of chicken pox. When the kids join the adults at the end of the day they are adorned with Stutter Bugs, a proud display of their stuttering skills.
Stutter Monsters
Children have created Stutter Monsters out of anything and everything: decorated cookies (Yum! Eat that Monster!), scraps of paper and fabric, clay and play dough. These activities are fun and the kids have something they have made to show parents and to take home with them.
Stuttering Jeopardy
This Jeopardy-like game is great for older children and teens. The older groups have played the game in locations that include a restaurant. It's a great way for these older children to get to know their peers and for siblings of children who stutter to test their knowledge of stuttering against that of the "expert" stutterers.
Music
Music is a great tool for all ages. We have invited children's musicians to work with the younger groups. Songs have been adapted by slowing rate, increasing rate, reducing and increasing loudness levels, even adding stuttered speech to the lyrics. Children have also been helped to create a new song that is about stuttering and that includes stuttering.
Role playing
Children have brainstormed ways to deal with teasing and bullying. After practicing these short vignettes within the group, the kids have been videotaped. The videotape has then been shown to the combined adult and children's groups at the end of the workshop day.
Open Mic
A long-time staple of stuttering self-help group meetings and conferences, Open Mic is a perfect way to end a workshop day. After the groups have come together at the end of the day and the children's work has been presented, all workshop participants are invited to address the group using a microphone and podium. The smallest of the children are often the first to come forward to talk bravely and with stuttering about their day. As parents, teen and adult stutters, and even SLPs come up to say a few words in support of their experiences, there are often tears in the audience.
Parent and SLP Activities - Lee Caggiano
Workshop activities for parents and SLPs are based on the philosophy that family-based support is an integral component of successful management of stuttering. As discussed in this paper's introduction, the primary goal of workshop is to provide support for all participants. Our second goal is that stuttering be talked about openly in a positive way by children, parents and SLPs. Our third goal is to provide participants with information regarding the nature of stuttering and ways to manage this disorder. All activities are developed to meet these goals. The following is a description and rationale of workshop activities.
Ice breaker activities are used to immediately begin desensitizing participants and work towards increasing their comfort with stuttering. Parents have opportunity speak with other children who stutter, in a safe, fun and non-threatening activity. Parents also get the opportunity to observe their children becoming comfortable and having fun with others who stutter. For many children and families this may be the first time they have heard someone else stutter. SLPs have the opportunity to engage with children who stutter in a non-therapeutic environment. This activity begins the process of providing support and allowing stuttering to become more acceptable. Ice breaker activity themes typically involve accepting/embracing differences.
Round table discussions
Discussion groups are facilitated by a parent or an SLP. The group provides the opportunity for parents to share concerns and/or fears and information regarding parenting a child who stutters in a safe and supportive environment with other parents. Often parents have never shared these concerns. Sharing with other parents can begin to relieve some of their feelings of guilt and inadequacy that interfere with successful parenting.
When SLPs are included in the discussion groups, it allows them a greater understanding of difficulties in parenting a child who stutters. Topics may include : how to best support children who stutter, what obstacles get in the way of their children's success, how to define/measure success, what parents want for their children, what parents need from speech therapists, what has been most helpful for parents, how to advocate for child in schools, how to increase self-esteem in children.
Panel discussions
Panels of adults who stutter, parents or adolescents who stutter share personal stories of living with stuttering and offer suggestions to parents based on their own experiences. The opportunity to hear several different perspectives from those who have experienced stuttering first hand is very helpful for parents and SLPs. An open and honest discussion of stuttering often leaves parents feeling hopeful and encouraged to continue providing support for their children. Discussion topics vary: personal experiences growing up, what you would have done differently, and advice to parents on a variety of topics, similar to topics discussed in Roundtable discussions.
Presentations by Fluency Specialists
Speech-Language Pathologists specializing in stuttering provide information for parents and SLPs regarding the nature of stuttering and ways to manage disorder. Participants obtain information and guidance regarding problem solving relative to the stuttering. Informational and counseling sessions empower parents to advocate for their children and themselves. SLPs gain a better understanding of topics that are of concern to parents. Many times presentations encourage participant interaction, which allows parents and SLPs to better understand each others needs/concerns. Presentation topics may include: How to choose effective therapist/therapy, developing functional goals in therapy, parents and SLPs working together, developing functional goals in therapy, realistic expectations of therapy, building self-esteem in children who stutter.
My daughter (Valerie, age 18) was one the original attendees at the first FRIENDS, The Association of Young People Who Stutter, annual national convention which was held in July 1998. Being 12 years old, she was not an eager participant; in fact she was vehemently against attending. It took a little time, but after getting to know the other participants, both youth and adult, she thoroughly enjoyed herself. By the end of that first weekend, she had already made mental plans to attend the next annual national FRIENDS convention. Her plans to attend the FRIENDS convention have continued for the past seven years and still continue each year. It is through our families' involvement with the FRIENDS organization that we chose to attend the St. Louis FRIENDS & Family day.
Val was once again with "her people" as she calls them, and she felt good. At the first Family Day, Val felt like she was a seasoned professional. She had already attended three national FRIENDS convention and was pretty proud of herself. She knew what to do and what to expect. She loved it!
As her parents, we were once again able to discuss our concerns and the emotional issues of raising a child who stutters. Support groups are successful because they offer a safe place where you are can share a common situation. Family Day was, and is, much more than a support group, it's a day of learning, sharing experiences, having fun and maybe even shedding a tear or two - for the children, the parents, and even the SLPs who attend. It's a time when the children can make a "speech monster", learn to juggle and maybe just hang out with other kids just like them. It's a time to hear parents tell stories about how their child has never met another child "like them" who stutters, or to hear about how courageous children can be when they stand bravely in front of their class trying to read aloud and to have a "block" and for the class to hear nothing. Situations like these are heartbreaking for any parent to hear, but with the support you receive at events like Family Day, you begin to realize that you are not alone, and more importantly, that your child is not alone.
I wish I could explain how important it has been to our family to be able to connect with other families who have a child who stutters. I tell my co-workers and friends that "it is the single most important thing that we have ever done as a family". Our involvement with the FRIENDS organization and its annual conventions and Family Day has helped my daughter to become a confident young woman. She's going off to college now, and through FRIENDS she has met successful businessmen and women who stutter, successful professors who stutter, successful SLPs who stutter, successful journalists who stutter and she knows she can be and do whatever she sets her mind on. She has also learned that her stuttering doesn't define her, it's just a part of her, and for that I thank the FRIENDS organization and all the volunteers that lovingly work on FRIENDS and Family Day and the FRIENDS annual national convention. Without volunteers, this organization couldn't do - what it does. I thank you from the bottom of my heart.
Perspective of an Adult Who Stutters - Bill Shannon
When I was first invited to participate in the FRIENDS & Family Day workshop a couple of years ago, I was thrilled. I recognized that I was getting involved with a talented and caring group of people who were motivated to improve the lives of children and teens who stutter and their families. As an adult who stutters, I have gained insights along my path that I was now willing to share. I also knew that the one thing I wish I had growing up was support. Support in knowing that I was not alone and perhaps a friend to reach out and tell me "I know what you're going through. It will be OK. You are OK!" The turning point in my life was when I realized that it is OK to stutter, that it is much harder and more painful to try to avoid stuttering than to face it. This is one of the messages I want to impart to my young friends as we gather in a group for the first time at Family Day.
I have worked as facilitator for the teen group for the past several years. What strikes me immediately on meeting the teens is the strength and courage of these young people. Having been there myself, I know that it takes a lot to just "show up" for the first time. The workshop is an ideal format for support, since there is usually a good mix of teens who have attended workshops or even national conventions, along with others who are there for the first time. The more experienced young people often take the lead during the initial activities and are the first to volunteer. Once the group gets going with an icebreaker activity and some good stuttering, even the first-timers start to open up and share. It's exciting for me to watch the transformation that occurs as the quieter ones, who were moments ago silent and avoiding eye contact, start to perk up and speak more. When these teens realize it is safe to express themselves and that no one here is going to judge or tease them, the burden they have been carrying begins to lift.
I believe that by creating a safe and comfortable environment through role modeling, peer interactions and talking about stuttering, these young people begin to accept themselves for who they are right now. I enjoy observing the shift that occurs throughout the day as stuttering itself becomes more accepted and normalized for the participants. This holds true for the young people, as well as their parents, who begin to look at their son or daughter in a different light.
I often reflect on how far the support and self-help movement has come and I smile warmly knowing that groups like FRIENDS exist. It is my hope that by attending the one-day workshops, kids and parents will leave knowing that they are not alone. That therapy is just one piece of the puzzle and that support and self-help groups form another important piece, one that allows them to meet other peers who share similar interests and aspirations and to begin to understand that they can achieve all that they dream of, stuttering or not.
Invitation for Comments/Questions
We all find FRIENDS & Family Day to be an incredibly rewarding experience. The facilitators and participants learn from one another as we prepare for and participate in the event. For those of us who facilitate, we gain so much from working together to plan the event, learning from each other as we work. A real treat for all of us is the final planning session, which takes place the day before the workshop. All of the out-of-town and local speakers and facilitators gather together at Susan Short's home. Her wonderful husband, Steve Castleberry, pampers us all with a gourmet dinner, and we have an evening of preparation and discussion, along with a lovely time of socializing. We end the workshop day with yet another special meal, hosted by Susan and Steve, where we can talk about the day and relax after a hectic, but wonderful experience. We encourage each of you to consider developing similar activities in your own communities. We look forward to hearing comments and questions from our readers.
Berstein Ratner, N. (2004). Caregiver-child interactions and their impact on children's fluency: Implications for treatment. Language, Speech & Hearing Services in Schools, 35, 46-56.
Brisk, D.J, Healey, E.C., & Hux, K.A. (1997). Clnicians' training and confidence associated with treating school-age children who stutter: A national survey. Language, Speech, and Hearing in Schools, 28, 164-176.
Linn, G.W., & Caruso, A.J. (1998). Perspectives on the effects of stuttering on the formation and maintenance of intimate relationships. Journal of Rehabilitation, 64, 12-16.
Manning, W. H. (2001). Clinical decision making in fluency disorders, 2nd Ed. Vancouver, Canada: Singular-Thompson Learning.
Shapiro, D.A. (1999). Stuttering intervention: A collaborative journey to fluency freedom. Austin, TX: Pro-Ed.
Starkweather, C.W. & Givens, J. (1997). Stuttering. Austin, TX: Pro-Ed.
You can post Questions/comments about the above paper to the authors before October 22, 2004.
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