About the author: Doreen (Dori) Lenz Holte is a professional writer and author of Voice Unearthed:  Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter.  She is also the proud mom to Abe, Adam, and Eli.

When our son Eli was around 12, I asked him if he remembered being told that it was okay to stutter.  It had been three years since we stopped traditional speech therapy and I was curious as to how he would respond.  He thought for a moment and replied “Once I stopped stuttering they would give me stickers or let me play with the toys in the room.  They’d tell me it was okay, then they’d tell me not to do it… I stopped talking as much because they said it was wrong.”

When Eli was between five and nine years of age he saw a number of speech therapists for treatment for his stuttering.  These therapists had varying degrees of experience with children who stuttered – ranging from none to having an ASHA Board Recognized Fluency Specialist certification.  Each therapist enlisted fluency shaping and stuttering modification speech tools, the approach considered to be “evidence-based best practice” by ASHA and leading universities.  Each therapist enthusiastically rewarded Eli with an array of colorful stickers when he used his speech tools.  At the same time I witnessed each of them kindly and continually assuring Eli that it really was okay to stutter.   They never told him it was wrong…I am certain of that.

At home during special time (time set aside each day to practice using speech tools)  I would clap for and praise Eli when he successfully used his Tigger talk and turtle talk to deliver non-stuttered speech.  I would also assure him that it really was okay to stutter.  I also never told him it was wrong to stutter, but that was unfortunately the message he came away with.

We were confused and confounded when, even with all the positive reinforcement, Eli did not transfer the use of speech tools outside the clinic setting or our special time at home.  After four years of therapy we resigned ourselves to believing that at least we had given him a tool box full of speech tools…he would hopefully use them when he was ready.  (This is a common lament I’ve heard from both parents and speech therapists throughout the years.  “If he would just use his tools.  He can use them in therapy, so why not in other places?  He just needs more practice…”)

When Eli was nine, we stopped traditional speech therapy.  He had gone from mild to moderate to severe and was now twisting his chin to his shoulder and growling in order to talk…if we were lucky.  Most of the time he just didn’t talk.  We noticed the silence when he was sitting around the table at Easter with aunts, uncles and cousins.  We noticed the silence at 4H meetings and during home school co-op days with friends.  Even at home with us he became increasingly withdrawn.  We felt like we were literally watching our Eli fade away.   We would vacillate between gently reminding him to use his speech tools and ignoring the behavior. We felt increasingly fearful and lost when it came to Eli’s struggles with speaking.  It seemed that the silence and disconnection was proving to be a far greater handicap than the stuttering itself.

In retrospect, there is no doubt that the silence was a result of the shame Eli felt when he stuttered.  He also felt that shame when he didn’t meet up to the expectations implied in the ongoing praises and reward of stickers for non-stuttered speech.  Dr. Brené Brown has researched the subject of shame extensively and states that “nothing silences us more effectively than shame.”  Brown, Ph.D.,  licensed social worker, and renowned author and speaker goes on to say:

shame unravels our connection to others…In fact, I often refer to shame as the fear of disconnection – the fear of being perceived as flawed and unworthy of acceptance or belonging. Shame keeps us from telling our own stories and prevents us from listening to others tell their stories.  We silence our voices and keep our secrets   out of the fear of disconnection. ¹

The role that shame plays in stuttering behavior is no surprise to parents or speech therapists.  It is the absolute last feeling we want them to experience around talking but are our efforts backfiring? Was it really developmentally appropriate to expect a child of this age to manage the complex and conflicting messages of “It’s okay to stutter but here’s a reward if you don’t.”?  Research into the cognitive traits shared by children, ages 6-10, helps to shed some light on our discomfort.  In general, child development experts ² agree that this age group:

• Has a strong desire to perform well and do things right.
• Finds criticism or failure difficult to handle.
• Views things as black and white, right or wrong, wonderful or terrible, with very little middle ground.
• Naturally seeks praise and wants to conform.

Using speech tools requires a level of energy and concentration that is hard to fathom even for adults.  When you consider the development traits of children you begin to understand how shame can result from the unrealistic expectations and conflicting messages.  In addition, many experts (and parents) report that children who stutter are often more sensitive than others their age.   Mary Elizabeth Oyler,  a speech-language pathologist who also stutters has done extensive research around the issue of children who stuttering and sensitivity.  She found that:

children who stutter were significantly more sensitive and vulnerable than non-stuttering    children.  In addition, 84% of the children who stutter fell in the highly sensitive range as          compared to 36% of the children who do not stutter. ⁴

When we step away from a focus on eliminating the moment of stuttering behavior and look at the whole child, we truly begin to understand why a child might choose silence over risking continued failure in front of those they most want to impress and please.

In 2011, I  published Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter.   During my six years of research and reflection for this book I discovered a plethora of  disagreement, confusion, and uncertainty around treatment for children who stutter.   Extensive research around shame and stuttering has been done by Dr. Bill Murphy, speech-language pathologist and a clinical faculty member at Purdue.  Murphy warns:

The emotions of shame are self-perpetuating, regenerated repeatedly by the child, even if the external stimulus (a parent inappropriately reminding a child to “use your techniques,” or a classmate laughing) is no longer present… the self acquires the identity of failure, at least in relationship to speaking skills. ³

Professional organizations and academia have an ethical obligation to abide by treatment approaches that are deemed to be best practice stemming from evidence-based research.  The problem in this particular area is that the vast majority of research has been done on adults.  The research done with children is extremely limited and often labeled as “emerging” or “promising.”   The goals of the research are to make fewer speech errors.  The goal for a child is to avoid feeling shame and the most realistic way to accomplish this is to stop talking.

I am encouraged when I increasingly hear about a greater focus on desensitization and creating positive feelings around communicating.  But the use of stuttering modification and fluency shaping speech tools remain as a significant component of therapy for children as conveyed in ASHA’s  Specialty Board on Fluency Disorders Manual.5  The Stuttering Foundation of America even acknowledges that “many children and teens who stutter do not have the maturity or skill to monitor their speech in all situations. Therefore, it may be unrealistic to expect your child to use her tools in other environments at all times.”  What happens when you throw in a few stickers as a reward for using those tools?  What message does a child really walk away with?   Eli says “I stopped talking as much because they said it was wrong.”

From the time Eli was nine to this day, Dr. Jerry Halvorson, retired Communicative Disorders professor at the University of Wisconsin, River Falls has helped us provide support focused on keeping Eli talking and engaged in the world around him.  Within three months of changing our focus from reducing speech errors to keeping Eli talking we saw significantly less twisting, gurgling, and far more talking.  It was a long process that is far from over.  But today Eli is 17 years old, a full-time college student, a part-time employee, and a supportive and positive role model to his group of friends.   He still stutters, sometimes severely.  But he puts himself out there each and every day.  He can be wickedly funny… I figured it was a good sign when his co-workers affectionately nick-named him “Snarky.”  Now there is a good reason to break out the stickers.

References

1. Brown, Brene (2007) I Thought It Was Just Me (but it isn’t): Telling the Truth About Perfectionism, Inadequacy, and Power Penguin/Gotham
2. The National Network for Childcare, Great Schools.org, Human Development and Family Studies at Iowa State University
3. Murphy, B. (1999). The School-Age Child Who Stutters: Dealing Effectively with Guilt and Shame, VHS Publication NO. 86, Memphis, TN, Stuttering Foundation of America
4. Oyler, M. E. (1996b). Vulnerability in stuttering children. (No. 9602431). Ann Arbor, MI: UMI Dissertation Services.
5. http://www.stutteringspecialists.org/index.php?option=com_content&view=article&id=90:the-sbfd-manual&catid=79&Itemid=502