Thank you NSA! The National Stuttering Association sponsored another Family Fun Day in Boston this fall. Such a uniquely empowering event! Children who stutter meet one another, learn about stuttering and enjoy self-affirming activities. Parents learn about stuttering and share experiences. It’s a morning that takes hours and hours of volunteer planning. It was my privilege to help facilitate the teen group again this year. It is so energizing to spend time with people who work at self-improvement and mutual support.
The National Stuttering Association (NSA) is a self-help group for people who stutter. It has local chapters across the United States. There are videos, podcasts, books, newsletters, brochures and merchandize on the NSA website. The annual conference features programs for adults, families and speech language pathologists (slps). I’ve attended many of them, always returning home enlightened and enthusiastic.
The NSA annual conference is a ‘reality check’ for me. People of all ages fill the workshops and hallways with a variety of viewpoints. The many voices at an NSA conference are like a cacophony of bird song at dawn. Some are louder than others. Some sound nearly identical. Most are emotional and sincere. Everyone has a story.
Wondering what I mean by ‘reality check?’ Take a look at the writings of Doreen Lenz Holte, parent of a child who stutters. Voice Unearthed  is her memoir. Someone handed me a copy to read and then pass along. I was dismayed by the many pages of opinion presented as fact. But, I respected Ms Holte’s passion. Her arguments were no surprise. I’m familiar with the journey.
Let’s look at two of her comments.
One. Ms Holte challenges “the powers that be…to establish resources and support around indirect therapy, so parents have real options. If, as you tell us, ‘what works for one doesn’t work for everybody,’ then give us real choices beyond changing the moment of the stutter and minimizing speech errors.’” I’ve watched the profession search for these options. Perhaps this is why I learned way back in 1992 that differential diagnosis may be one key to designing treatment. A workbook called The School – Age Child Who Stutters: Working Effectively with Attitudes and Emotions came out in 2001. Research suggests that stuttering is often accompanied by other issues such as differences in phonology, language and temperament and there may be subtypes of stuttering. I’ve witnessed experts battle heatedly over early intervention. The debate rages on in a recent ASHASphere  and, quite frankly, I grow tired of the bitterness. Ms Holte is not alone in her confusion and frustration. 
May I suggest The POWERR Game as an eloquent option. It costs $16.00 and has been around since 2003. It was created by Gordon W. Blood, Ph.D., CCC-SLP, a well respected expert in the field. I presented this option to teens at the NSA conference in Atlanta and both NSA Family Days in Boston. The longer I stay in this profession, the more I appreciate this program. I really didn’t know how to access the depth and breadth of this resource in my younger days. The letters of POWERR represent Permission, Ownership, Well-Being, Esteem of Self, Resilience and Responsibility. What families need is this larger context in which to place stuttering treatment. This year, I designed new playing cards with many of the POWERR concepts represented as single words. For example, reaction, change, myth, and outcome fall under the category of Permission. The children in the NSA teen group selected from words like these and shared stories from their own lives. This became the preface for discussing speech and communication skills.
Two. Ms Holte was dissatisfied with several “rounds” of therapy (few details provided). Talk to many seasoned experts in the field of stuttering and you’ll hear this: It’s not the program that matters. It’s the relationship between the slp and the client. In the spirit of placing treatment in a broader context, I digress with story of my own of how people make a difference.
It is a bright, very warm, September afternoon at the soccer field. I sit with about 30 or so other parents in a single row of colorful folding chairs decorating a sideline. We watch our unique children become team players in a league sponsored by a local non-profit organization. I've watched for many years and it fascinates me how every child, every coach, and every fan contributes to the experience.
It's 2:30 and players age 12 to 18 (all shapes, sizes, skill-levels, and personalities) take the field. The referee blows a whistle, glances at his watch and the game begins. Red team players laugh as they pass the ball around. Blue team players are more serious. A few strong players touch the ball most of the time. Many blue team members look like spectators embedded in the game. Like a flock of birds swirling through the sky, players run around the field.
To my left, two women share some play by play. “She scored that goal from midfield! " To my right, a husband and wife catch up because he’s been on the road. The red team players exchange friendly, supportive banter. "That's it!...way to be!...man on, man on!" Then, a whistle. The game stops. A blue team player is called out for tripping.
Each person here adds to the joy of this moment. One angry parent could transform this pleasant community gathering into an anxious two hours. But I’ve never seen that happen. My only complaint is the aggressiveness of the blue team coach. The rules of soccer are the same for both teams. Yet coaches interpret the game differently and you can see it in how the children play. The blue team wins - again. And the fans politely congratulate everyone as we walk to the parking lot. But I know that some parents will request their children be on the red team next year. Because soccer is fun, except when it's not. It’s how you choose to play it.
Back to stuttering. This is not rocket science. Who do you choose as your friends? Who do you hire for projects? What religious community, social organization, or volunteer groups do you join? I bet you engage and employ people you feel good about. So here’s a problem. Public education provides one-size-fits-all programs. Students get “free” therapy with the only slp available. Health insurance covers a very limited course of treatment – if you’re lucky. An slp with additional training in stuttering may not be near you and tele-practice regulations make it difficult to access their services. I don’t accept insurance and I require parents participate in all treatment sessions. Consequently, I’ve always had few clients. I was glad to read that Ms Holt eventually found the “right” slp for her son.
I believe frustration about treatment boils down to one simple concept. We cannot change another person’s behavior. Parents want me to fix their child’s speech. It can’t be done. A child is not a tablet needing the right app or an animal to be trained. And no matter how I present therapy, I see parents continue to blame children for stuttering. Ms Holte is right. There needs to be a revolution in how we provide treatment for stuttering. The disconnect between researcher, clinician, and family hasn't been bridged. I for one will stop providing treatment in all but a very select few cases. Instead, I will offer family education and training as the only first option.
I wish you well on your journey with stuttering. When you are ready to change (I'm talking to parents and children) the National Stuttering Association and Stuttering Foundation are there to support and inform you.
And here’s a brand new gem: Stuttering is Cool: A Guide to Stuttering in a Fast-Talking World. This humble book filled with delightful drawings of Franky Banky & friends will validate the children, teens and even adults who stutter, especially someone far enough along on his personal journey to glimpse whole-picture thinking.  Mr Rossi gives us a modern version of the ‘reality check.’
Thanks for reading,
 Doreen Lenz Holte (2011) Voice Unearthed: Hope, Help, and a Wake-Up-Call for the Parents of Children Who Stutter. no publisher listed.
 Ibid. p. 104
 A 2-week residential training program at Northwestern University sponsored by the Stuttering Foundation
 Nan Bernstein Ratner, Ed.D. (2012) Evidence Based Practice and Practice-Based Evidence: Closing the Gap, Nashville, TN: Stuttering Foundation No. 6720.
 Roger J. Ingham and Janis Costello Ingham (Oct.28, 2014) A Misleading Account of Research on Stuttering Treatment for Young Children
 I recently switched to Practical Intervention for Early Childhood Stammering: Palin PCI Approach (2008) for children through age 7. Written by Elaine Kelman & Alison Nicholas. Published by United Kingdom: Speechmark Publishing Ltd. This program requires and respects parent participation.
 PowerR, p. 36