The ISAD Conference is an interactive online event taking place from October 1 - 22. Please take advantage of this remarkable chance to chat with the authors of several papers on stuttering. There is even an Office Hours – the Prof In link at which you can post any question about stuttering. Look for the ISAD conference link by visiting the Stuttering Home Page, www.stutteringhomepage.com. I have a Clinical Nugget this year called Fluency Lessons for Window Shopping. It is co-written with a high school student and describes our visits to local retail stores as a method of carryover of new speech skills.
As I prepared to chat with people from around the world, I reflected upon my 30 years as a speech-language pathologist. Sixteen of them were almost exclusively working with children who stutter. Why? Well, let’s begin with a memory.
My paternal grandmother died of Parkinson's when I was about nine years old. I can close my eyes and recall her dark green home, the small galley pantry, the living room where we watched Art Linkletter’s talent show, the screened porch that wrapped around the front of the house, the push button light switches, and the toad who lived in a hole beside the foundation. And, I recall my grandmother’s slurred and stuttered speech. The connection between the warmth I felt in her presence and my decision to specialize in fluency therapy startled me one afternoon in the 1980’s during casual conversation with an elderly woman. Long lost memories of my grandmother flooded my mind and I experienced one of those ethereal moments when one’s life seems to make sense.
Early in my career and for far too many years, I counted stuttered syllables and tried to implement highly structured and apparently logical speech therapy. I basked in the glow of hard-earned diplomas from intense and expensive higher educational institutions. Over time, I discovered that therapy was very different from classroom work and research projects. When a dedicated student experienced relapse, I was forced to question my education and my attitude. Confused and humbled, I had learned that work with clients is not described well using logic or percentages.
For licensed, certified health care professionals, the client -clinician relationship is defined by the American Speech Language Hearing Association (ASHA) Code of Ethics. (1) There are ASHA publications on recommended best practice. Continuing education and clinical practice requirements for ongoing recertification and license renewal keep professionals current. But sometimes one wonders what is real and what is paperwork.
In the past 20 years, my own therapeutic method has become more personal at the same time in which the profession of speech language pathology moved in a different direction. The profession has become more efficient. Data collection – for the benefit of insurance and educational institutions – seem to be paramount now. Experts continue to press for large scale research studies in stuttering to accommodate the medical trend toward evidence based practice. (2)
What influences treatment method and outcome? Research suggests there may be subtypes of stuttering. Attention deficit, phonological disorders, dyslexia and other issues can co-occur with stuttering. The transfer of more fluent speech to daily life is still the lock without a key. While the latest research in genetics is promising, how does this change the lesson plan? (3) Every client comes to therapy as a unique individual. I worry about demands for efficiency with an emphasis on data collection because therapy is not about stuttering – it’s about people. It seems to me that any data used to promote a treatment approach would need to include detailed descriptions of the individuals for whom it was “successful.” Will that happen?
My transition to a more personal treatment approach was nurtured by conventions of the National Stuttering Association and Friends: The Association of Young People Who Stutter. Attendees at these meetings expressed frustration with speech therapy. I was taken aback, discouraged and then grateful. I would come home and listen to my clients more carefully. My lesson plans changed to be more conversational and fun. But, new referrals to my practice were confused: why didn’t I have more rigorous demands for fluent speech? They were at the beginning of a journey that I and a few other SLPs had been traveling for a while. A small group of exceedingly dedicated SLPs (I was not one of them.) established the first ASHA Specialty Commission (4) and worked hard to address the multiple issues that make for a comprehensive approach to speech therapy for stuttering. There’s no quick fix, only a personal path of ups and downs and variable results. (5)
Now I ask about my clients’ lives and share a little of my own. Students get small prizes for just showing up. Homework expectations are replaced by congratulations for any evidence of personal responsibility. I match the efforts of my clients. Those who attended regularly and reliably receive highly individualized lesson materials. Attention to affective and cognitive issues equal that of speech motor change. Written reports are lengthy and include footnotes (very inefficient and time consuming!) My role is one of giving my very best to the few who are invest the same. Is this effective? Clients decide. Informal, annual data collection and ongoing conversation keep us focused on collaborative goals. Unsatisfied clients move on to other service providers.
Fluency enhancing strategies haven’t changed for many years and dissatisfaction with them has become more public. (6) I feel the most significant change has been a lowering of expectations for fluency to avoid rewarding covert behavior. This therapy option coincides with a greater appreciation of the client’s perspective, exquisitely documented in the film Transcending Stuttering (7). Treatment methods are controversial to this day, as demonstrated by articles published in 2012 issues of the ASHA journal Language Speech Hearing Services in Schools.
Talking is different from playing the piano, hitting a baseball, or learning to read, IMHO. Speech sounds are elusive and invisible. Listeners make snap judgments about a speaker’s competence, cultural identity, and eligibility for future relationships based on how they speak. It is societal expectations that drive clients into speech therapy. A Ted Talk titled The Disabled Listener (8) extols the profound value of respectful listening. Watch it and ask yourself how you might become a better listener.
Now the client trumps any specific treatment approach. My clients assume complete responsibility for scheduling sessions. They are equal partners in treatment design and implementation. Quite frankly, this is a horrible business model, and so, I continue studies in the field of literacy to expand my practice caseload. The warmth I felt listening to the stuttered speech of my grandmother returns whenever I put relationship before data and (illusions of) efficiency. My small contribution to the 2012 ISAD conference reflects this commitment to the individual.
Many grateful thanks to A. C. for his contribution to this effort.
(2) Nippold, M.A. & Packman, A. (2012). Managing Stuttering Beyond the Preschool Years. Language Speech Hearing Services in Schools (43) p. 340.
(3) Rowden-Racette, K. (September 18, 2012). In Search of Stuttering's Genetic Code. TheASHALeader http://www.asha.org/Publications/leader/2012/120918/In-Search-of-Stutterings-Genetic-Code.htm
(4) Specialty Board on Fluency Disorders http://www.youtube.com/watch?v=hrAxNijdJVY
(5) Schnieder, P. (2004) Riding the Fluency Instability Roller Coaster. http://www.mnsu.edu/comdis/isad7/papers/schneider7.html
(6) Voice Unearthed: Hope, Help, and Wake-Up Call for the Parents of Children Who Stutter http://www.voiceunearthed.com/
(7) Schnieder, P. (2005). Transcending Stuttering: the Inside Story http://www.mnsu.edu/comdis/isad8/papers/pws8/schneider8.html
(8) Lansing, S. E. (June 8, 2011) The Disabled Listener: They can talk, they can hear, they just don’t listen. TEDxTalks http://www.youtube.com/watch?v=hrAxNijdJVY
National Stuttering Association (NSA) conventions inspire me to rethink speech therapy. That’s why I love to attend. This year’s convention, held in Tampa, Florida, left me pondering how to place greater emphasis on advocacy as an essential communication skill. Advocacy goals could easily dovetail with America’s growing concern over bullying (1). New local laws in many states require school districts address this problem.
Skill at personal advocacy is a valid therapy objective. It used to be that speech-language pathologists (SLPs) focused on fluency. But success with speech change varies one person to the next and science has not yet figured out why. In the meantime, therapy outcomes have broadened to include multiple aspects of communication. Some SLPs take advantage of this trend to justify special education for children who stutter (CWS)(2).Others do not. I have watched this process over the past 30 years. I witnessed and I read heated arguments between university professors over exactly what the role of the SLP should be. While this divisive dialogue drags on, what can a parent do right now to help the child who stutters?
I propose parents find out if their state has enacted a law regarding bullying. I expect that when a parent provides the school with brochures from the Stuttering Foundation (3) AND a printout of their district’s legally mandated Bullying Prevention and Intervention Plan, we may see more CWS receive greater attention. Laws to promote a “healthy school climate” benefit all children. This means that when CWS are denied special legal protections because they are denied special education, their parents may have a legal alternative.
The 187th General Court of the Commonwealth of Massachusetts on May 3, 2010, approved “An Act Relative to Bullying in Schools.” (4) The Department of Elementary and Secondary Education responded with Bullying and Prevention Resources (5) and a Model Bullying and Intervention Plan (6). My own school district copied this plan, adding details about specific programs (7) and the administrative hierarchy responsible for their implementation. My district also has a District Improvement Plan that includes “Safe Learning Environment” as a target. I believe presenting this kind of information to school personnel adds weight and credibility to parents’ pleas for support for their children.
“The finding that the risk of being bullied in adolescents who stutter is high when compared to their fluent peers should be of considerable concern. Speech-language pathologists need to be aware of this information as they often serve as the strongest advocates for students who stutter in the school setting.” (8) Research indicates that children who stutter “are mimicked, made fun of, called names, physically bullied, and sometimes subjected to threats… It is clear that stuttering is an identifiable difference that invites bullying.” (9) This information is vital because mandatory professional development for school personnel must include “research findings on bullying, including information about specific categories of students who have been shown to be particularly at risk for bullying in the school environment…[with] a particular focus on the needs of students…whose disability affects social skills development.” (10)
Social skills development in adolescents includes “initiating interactions, self-disclosure, and intimacy in conversations and activities…assertiveness, responsiveness, and versatility. These skills allow speakers to make requests, actively disagree, express their feelings, initiate, maintain, and disengage in conversations…in multiple settings and with different conversational partners…” (11) Some school age children who stutter are at risk of falling behind in the development of these social/communicative skills because they avoid situations in which speech is difficult and in which they risk ridicule.
“For adolescents who stutter, changing motor speech behaviors may not result in accompanying attitudinal and cognitive changes. Programs that reinforce assertiveness skills, positive communication models, acceptance of stuttering, and ways of dealing with stuttering may actually assist in dealing with potential co-occurring issues like bullying.” (12)
Again and again my students avoid advocating for themselves. How many times have I heard children say that teachers and friends understand stuttering already so there is no need to discuss it?! Everybody knows I stutter and it’s no big deal, they say. Yet these same children report avoidance and negative attitudes on written checklists. They cry about school assignments, allow others to speak for them, ‘forget’ to talk with teachers, limit class participation and/or avoid after school activities because they are experiencing so much stress over their speech. I respond by accepting the client in the moment. But maybe a little confrontation wouldn’t hurt. Exactly how could they handle some of these problems proactively?
Has speech therapy flaunted fluency in a variety of disguises? My lesson plans involve fluency enhancing techniques, voluntary stuttering, desensitization, situation hierarchies, English Language Arts, DAF, Audacity ®, and even concepts of cognitive behavioral therapy. Do all of these perpetuate a promise that the end-goal is greater fluency? When can a CWS share personal experiences, hopes and dreams, thoughts and feelings in a friendly conversational way that would shed light on social skills competency? How can speech therapy allocate time to the complementary goals of speech change and social skills development?
Activities which blend social skills training with speech therapy could draw from resources approved by the school district, pragmatic language therapy materials already on the SLP’s bookshelf (14), or reader-friendly publications for the layperson (15). For example, scripts and role plays [Model Plan, IV. A. p. 6] could be about a stuttering-related problem. A program specifically for stuttering is available for grades 3-6 from the University of Alberta, Edmonton, Canada. (16) The point is to be proactive. A person who stutters has the responsibility to “be conscious that he or she has the power to promote awareness about stuttering and its ramifications.” (17) An SLP can facilitate the development of advocacy skills by making it a greater priority and interfacing with bullying prevention programs.
My friend, Marybeth Allen, ran a workshop at the NSA convention for elementary school age children. It was called “What Bugs You?” Marybeth is a Clinical Supervisor at the University of Maine, the sweetest person ever, and my roommate. As I managed a craft hot glue gun, Marybeth charmed the children into making bugs out of styrofoam containers, fuzzy sticks, pompoms, colored paper and markers. Then she gave them a small piece of paper on which to write what bugs them about stuttering. They put their hand-written complaints into the bug. Topping of the list of complaints was teasing and bullying.
New bullying prevention and intervention laws may offer CWS some well-deserved special consideration. These laws may not qualify CWS for special education services, but, hopefully they will enlighten school personnel. Sadly, a publication by National Stuttering Association written specifically for SLPs, parents, teachers, administrators, and CWS is out of print. (18) It explained issues unique to CWS. I get the feeling that many of these children are “below the radar,” keeping their stuttering and their suffering to themselves. Let’s hope that bullying prevention and intervention programs will improve the lives of our children as depicted in this video shared on the firstname.lastname@example.org:
(1) stopbullying.gov http://www.stopbullying.gov/
(2) Scott, L. (2010) Decoding IDEA Eligibility. [DVD] available at www.stutteringhelp.og
(3) Stuttering: Straight Talk for Teachers, 8 Tips for Teachers, www.stutteringhelp.org
(4) Massachusetts General Laws, http://www.malegislature.gov/Laws/SessionLaws/Acts/2010/Chapter92
(5) Bullying Prevention and Intervention Resources, http://www.doe.mass.edu/bullying/#1
(6) Model Bullying Prevention and Intervention Plan, http://www.doe.mass.edu/bullying/ModelPlan.pdf
(7) Open Circle: Getting to the Heart of Learning, http://www.open-circle.org/ ;
Massachusetts Aggression Reduction Center, http://webhost.bridgew.edu/marc/
(8) Blood, G. & Blood, I. (2004) Bullying in Adolescents Who Stutter: Communicative Competence and Self-Esteem. Contemporary Issues in Communication Science and Disorders, 31, p.76.
(9) Langevin, M & Prasad, N.G.N. (2012) A Stuttering Education and Bullying Awareness and Prevention Resource: A Feasibility Study. Language, Speech, Hearing Services in Schools, 43, p. 345.
(10) Model Bullying Prevention and Intervention Plan, p. 4, II.B.(iv), http://www.doe.mass.edu/bullying/ModelPlan.pdf
(11) Blood G. & Blood, I p. 70.
(12) Ibid. p. 76
(13) Massachusetts Department of Elementary and Secondary Education, Guidelines on Implementing Social and Emotional Learning (SEL) Curricula, http://www.doe.mass.edu/bullying/SELguide.pdf
(14) I happen to own Kelly, A. (2002) Talkabout. UK: Speechmark Publishing Ltd.
(15) Cooper, S. (2005) Speak Up and Get Along! Minneapolis, MN: free spirit publishing.
(16) Institute for Stuttering Treatment and Research. Teasing and Bullying: Unacceptable Behavior (TAB) http://www.tab.ualberta.ca/
(17) International Stuttering Association, Rights and Responsibilities of People Who Stutter http://www.isastutter.org/what-we-do/bill-of-rights-and-responsibilities
(18) Flores, T. Ed. (2004 ) Bullying and Teasing: Helping Children Who Stutter , www.westutter.org