About the Author: Doreen Lenz Holte is mom to a 27-year-old who stutters, author, and world-wide parent advocate for families with children who stutter. Holte’s first book, Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter, published in 2011, shared her research findings, her family’s  journey through speech therapy, and their successful efforts to get their son talking again.  Her second book, VoiceS Unearthed: The Impact of Childhood Intervention on Those Who Continue to Stutter, was published in 2023. Holte interviews 60 adults to gain the long view of the impact of therapy focused on fixing. Holte lives in Golden Valley, MN with her husband Peter and enjoys hanging out with all of her adult children – three boys and one lovely daughter-in-law.

Someone should have told my grandmother that one size does not fit all. My mom was born in 1934 – in the heart of the depression. She claimed that her mother could not afford to buy new size shoes when her shoes became too small. I assume my grandmother figured any shoes were better than no shoes. I doubt she realized that wearing those too-small-shoes would lead to a severely limiting physical challenge that plagued Mom for her entire life. She developed hammertoes. Not just one toe, but all 10 of them. Her ability to walk was limited, it was impossible to find shoes that were comfortable, and she was deeply embarrassed of her deformed feet.

While it is true that there is not one type of therapy out there that will fit all children and adults who stutter, it is critical that parents and speech therapists are aware of the “size” options and understand the harm that can be done when the “size” doesn’t “fit”.

When our 27-year-old son who stutters was young, I, like my grandmother and shoes, figured that any therapy was better than no therapy. I wasn’t aware of the options so my only frame of reference was what we were experiencing at the time. The “size” options we had to choose from were for our son to

• think about his breathing,
• think about what his tongue was doing,
• think about what his lips were doing,
• pay attention to how his listener was reacting,
• pay attention to when the listener made a speech error,
• start his words with easy bounces, stretch out his words,
• use appropriate inflection and think about what he was going to say before he said it,
• and if all else failed, just tap.

The “fix” options were to stutter less or, at best, not stutter at all.

After six years of on-again, off-again therapy with a number of therapists, our son had increased speech tension, increased physical tension, and decreased engagement with friends, families, and his community. Looking back, I  now envision our son’s insides curling just like Mom’s toes. Then I would wonder how much worse he might be if we hadn’t taken him to therapy session after therapy session.

In the midst of this journey, I attended a national conference on stuttering. I had expressed my dissatisfaction with the outcomes of the therapy our son was receiving to a speech language therapist who was also a university professor. I remember feeling frustrated when she responded with “one size does not fit all” but I was not able to articulate why in the moment (isn’t that always how it goes?).

Now, thanks to this year’s ISAD theme, I have the opportunity to explore what I was feeling in this moment. “One size does NOT fit all” is a platitude. Wikipedia states that:

“A platitude is a trite, meaningless, or prosaic statement, often used as a thought-terminating cliché, aimed at quelling social, emotional, or cognitive unease. The statement may be true, but its meaning has been lost due to its excessive use. Platitudes have been criticized as giving a false impression of wisdom, making it easy to accept falsehoods 1”

Andrew Dana Purlang, a disability advocate and former Executive Director of the North Country Center for Independence, goes on to say that platitudes are:2

• a statement that gives a false impression of wisdom, making it easy to accept falsehoods,
• a sanctimonious cliché, a statement that is not only old and overused but often moralistic and imperious,
• shallow statements that can lull us into accepting things that are actually false and foolish.

Bingo. I now have a better grasp on why this response didn’t feel helpful – in fact, in retrospect I think it did more harm than good. I felt it invalidated the negative reality of our experience, my pain and feelings, and pushed me towards accepting the therapy we were receiving because this suggested to me that the longer we accessed speech therapy, the more apt we were to find the right fit. We just had to keep on keeping on.

In the words of Raisa Gorbachev:

“Youth is, after all, just a moment, but it is the moment, the spark, that you always carry in your heart.3”

Finding a therapist, seeking insurance approval, and determining if that therapist can provide helpful intervention can be a long process. We always went in with high hopes and hesitated giving up. What were we doing wrong? Somebody must be finding this therapy useful – why not us? How much more of our son’s childhood were we going to spend trying to find the right “size?” His childhood spark was already being greatly diminished by our quest for fluency.

Since that time I’ve learned that 88% to 91% of children who begin to show speech tension will see that tension subside with or without therapy. The remaining will persist to some degree into their teen and adult years. 4 The current narrative directed at parents is vague and can easily delude a blind-sided, heartbroken parent into chasing a fix. For instance, the following statement is widely touted by many professionals and organizations including the National Stuttering Association:

“early intervention is the most effective way to help children overcome their speaking difficulties. 5”

What do we mean by “early intervention”? What do we mean by “overcome”? What parent new to this challenge would not assume “overcome their speaking difficulties” means to fix; to make this behavior stop?  Parents will go out hell-bent on finding a fix like we did 25+ years ago. Why establish the expectation of a fix in parents’ minds in the first place? When the fix doesn’t happen, this only serves to exacerbate anxiety and the speech tension, secondary behaviors, and disengagement for those who will persist.

We are seeing an increased availability of approaches focused on minimizing the emotional toll that takes a bite out of short and long-term quality of life. It helps to know what we’re looking for. Parents I interviewed for my last book who began with an approach focused primarily on the emotional aspects of this challenge admitted that they “lucked” into it. They were not even aware this type of approach existed. In today’s world, it doesn’t have to be about luck – we can empower both parents and speech therapists to make informed decisions that will result in a far better fit than the focus on fixing that has dominated therapy for children for decades.

While there are still problems with the current narrative, new messaging that helps parents to understand the risks of focusing on a fix and the benefits of focusing on our children’s emotional well-being is becoming more prevalent. Parents deserve transparency–up front, not down the road after their child’s spark has dimmed because their childhood has been permeated with the message that we don’t like the way they talk so they should change the way they talk. Following is an example of what adults I interviewed for my recent book project had to say:

“For the most part, I was very lucky. I didn’t have any bullies or anyone making fun of me. The negative impact was a bit more insidious – just not talking and not saying what I wanted to say and feeling like when I did say something, it wasn’t right. Growing up, it got to the point where saying anything was better than saying what I really wanted to say.”

25-year-old Dwight

“What makes us human is our relationship with others, talking to other people. I was given the message in my childhood speech therapy that I couldn’t do that with a stutter.”

44-year-old Cyrus

“After the age of 8, I decided to not start anything new so I wouldn’t have to say my name.”

27-year-old Nadine

I am encouraged by many of the younger SLPs and SLP students I have connected with who are going against the grain, making waves, demanding change. I am inspired by those seasoned professionals who are embracing a different way of seeing stuttering and treating stuttering – with children and adults. Consumer education is key to keeping the momentum going. Even with so much information readily available, parents often don’t realize there is a need for them to seek out information beyond the speech therapists’ office. Here are more comments from parents I interviewed for my recent book:

“Sadly, when you’re parenting, you don’t know what you don’t know.”

Linda and John, parents to 41-year-old Courtney

“We were not educated about the different approaches. We just did what the therapist said. If parents don’t know what the options are, they’re not going to go looking for them.”

Trudi, mom to 11-year-old Clare

“All I wanted was a speech therapist who knew enough to know what they don’t know. Instead of wading in with “Let’s throw a bunch of stuff at this kid and see what sticks.”

We are all aware of different shoe sizes and styles, and it doesn’t take long to figure out if the shoe we’ve chosen is the right fit. This is not the case with speech therapy for children who stutter. When we try on different therapies with our children, the damage resulting from a bad fit is not near as obvious and can take a huge toll on both short and long-term quality of life.

Therapy must become more interactive, with speech therapists, parents and those who stutter seeing themselves as explorers and discoverers. All of the involved parties must understand the uncertainties, the risks, the difference between the “fit” being a fix, and a “fit” being an increased quality of life. Speech therapists can be helpful guides in the journey but they must have the skillset to empower families and children by addressing what really matters including:

• Being a good listener and helping others become better listeners.
• Recognizing the role that anxiety, both in the parent and the child, plays in exacerbation of the negative impact on quality of life.
• Learning how to comfortably talk about stuttering with a parent, with a child, with a teacher, with a friend, with other family members.
• Learning how to self-advocate and advocate as a parent.
• Building a home environment that supports joyful communication and encourages acceptance, passion, and engagement in the world.
• Helping parents and children become desensitize to the moments of stuttering.

“One size does NOT fit all,” so let’s be clear about what we mean when we say “size” and what we mean when we say “fit.”  Parents deserve better. Our kids deserve better. Our speech therapists deserve better. Many widely-accepted therapy approaches are not only the wrong size and fit for many, but like my mom’s too-small-shoes, can lead to a lifetime of challenge and impede quality of life.

Bottom line, there is nothing stopping us all from doing better. Let’s go.

Wikipedia, Nathan J. Robinson, “The Uses of Platitudes”, Current Affairs, August 23, 2017 online.

1. https://disabilitythinking.com/disabilitythinking/2018/8/12/disability-platitudes
2. Gorbacheva, R. https://quotes.pub/q/youth-is-after-all-just-a-moment-but-it-is-the-moment-the-sp-845715
3. Yairi E., Ambrose N. Epidemiology of stuttering: 21st century advances. J Fluency Disord. 2013 Jun:38(2):66-87, doi: 10.1016/j.jfludis.2012.11.002.Epub 2012 Nov 27. PMID: 23773662:PMCID ONC3687212/
4. https://westutter.org/what-is-stuttering/