By In mid-January, the wonderful speech-language pathologist Dr. Ana Paula Mumy and I launched the fourth iteration of the Every Waking Moment Book Club. This running—our largest yet—used the three sessions to cover the three parts in the book, Affliction, Transcendence, and Change—along with an introduction of the key terms and topics, discussion, and lengthy question and answer sections. Over 20 school, private practice, and clinical-based speech therapists participated, who all were eligible to receive continuing education credit.
This club was unique for me because I knew very few of the therapists, making it an amazing opportunity not only for me to connect with those seeking to better understand stuttering, but to provide a welcoming space for all of them to make their own connections.
Since Ana Paula and I began this book club, I’ve begun to see therapists who previously participated get pulled into the stuttering community and are making valuable contributions. While it probably isn’t a direct correlation, it plays a small role, and for that I am grateful for the opportunity to bring them together for experiential learning and to, hopefully, show the value for their continuing education of direct engagement with PWS. I’m seeing, hearing, and feeling the power of coming together to help foster collaboration across the community.
To capture and share some of this power, the following is a summary of the sessions, our discussions, and the feedback we received from the therapists.
Session One – Affliction
The beginning of the first session always provides an opportunity for the therapists to share their initial impressions and takeaways from Part I. The themes that came through are the depth, vulnerability, and honesty with which I wrote my story. Also, the negative impact that years of fluency shaping therapy, the number of therapists and programs, and the dogged pursuit of fluency had across my childhood, at all costs. Others, though, highlighted my putting of words to the many aspects of growing up with stuttering, and, in a constructive way, how some therapeutic practices caused more harm than good.
The gauntlet of therapy that I wrote about regularly strikes a nerve with the therapists, with one even calling it a tragic story of the human spirit. Reflecting in such a way was never my intention, because, after all, I’m now thriving with stuttering. But the specificity with which I describe and talk about the experiences of my journey allow the therapists to make connections to their clients that help them dive deeper into what it feels like to stutter—that was intentional.
As we walked through the key terminology from the book—affliction, uncertainty and possibility, trauma, and healing—I used my many go-rounds in speech therapy to talk through my behavioral and cognitive profile from these childhood years. Anger, frustration, self-isolation, dissociation, and my never-give-up mindset, which I deem the identity of resilience (and is not a good thing). I emphasized one feeling not mentioned above because I precedes and perpetuates each: shame. The thing about shame in stuttering is that it should be the primary focus of therapy for we who stutter, not the sight, sound, or struggle of our speech. I won’t get on my soapbox again (see below textbox), but I used my developing thoughts on how shame begins to grow as the means to discuss the importance of the parent or caregiver-therapist relationship for children who stutter.
The seeds of shame are planted by reactions and subsequent actions to address the way the child talks, whether their intentions are positive or negative. Let me be clear, parents or caregivers do not cause stuttering or make it become a chronic disorder. While this link may be obvious, the child is unable to process this dynamic, one in which the person(s) they naturally gravitate towards for comfort, safety, and reassurance become the same person(s) who point out that the way they talk is not normal, thereby engendering a difference in their identity during the most formative phase in their development. This dynamic severs the primary interpersonal relationship that the child needs to adapt to its quickly evolving world.
Getting the home environment trending towards acceptance was a challenge most of the therapists understood, as evidenced by some candid discussions. It was within these responses that a lightbulb flickered on for me—some of the therapists expressed concern that they didn’t feel equipped to keep up with how quickly the pendulum of speech therapy for stuttering was shifting to acceptance-based approaches. I had spent so much time shedding my own unfounded frustration I held towards the therapists who couldn’t help me as a kid—which is appropriately healed—that I hadn’t considered the very real impact on therapists transitioning from fluency-based to largely acceptance. The participating therapists even called it a shame-inducing experience.
However, my eyes are wide open now. I understand their predicament and I feel their our shame. The pressure within the community to evolve and fall in line has never been stronger. If you’re not doing acceptance-based stuttering therapy, then whatever you’re doing is wrong. Intention, here, is obviously what matters most, and if you’re trying to fix or cure stuttering, that is wrong, but I also know who I’m talking about here.
What is acceptance? How do you begin to apply an acceptance-based model for stuttering? How do I measure progress or success? This uncertainty is akin to the age-old phrase for we who stutter, “you have to accept yourself as a person who stutters,” or even “it’s okay to stutter.” Uh, okay, so, how does one do that? That’s where most therapists land…and it’s an opportunity to come together. Instead of developing imposter syndrome, therapists need to be empowered, with training, resources, and constructive support from the community, as I hope they felt in the bounds of this book club. (I haven’t stopped thinking about this problem since this first session on February 17th, but more to come on that.)
Session Two – Transcendence
The second session focused on readiness for and the process of change, and Avoidance Reduction Therapy for Stuttering (ARTS). Within this context and using my journey, we sought to answer the questions “If not fluency, then what?” and “where and how do we start [to implement therapeutic methods other than fluency-shaping]?”
We opened by talking through a day-in-the-life of my behavioral and cognitive disposition as a child in the various therapy settings I experienced through my school age years. It led to a discussion of counseling and whether psychotherapy, in tandem with a school-based or private psychologist, was a viable approach to help navigate the anger, frustration, and related emotions I felt trying to adapt to living with my stutter. There was a belief that speech therapists should counsel their clients themselves given that psychologists don’t necessarily know the stuttering profile. However, I politely disagreed, offering that speech therapists can partner with mental health professionals until they feel confident in their ability to counsel—a collaboration that I know could have helped me and as aspect of ARTS that accelerated my change.
Part of this discussion flowed over into the “If not fluency, then what?” portion in which we focused on parts of therapy not directly tied to working on the act of stuttering. This included rapport and trust building with clients, learning about stuttering in general, such as what is happening physically, mentally and emotionally when we stutter, finding the right words to describe how stuttering feels, and taking stock of how stuttering influences daily life. We discussed how each of these non-traditional parts of speech therapy of stuttering could be calibrated to the age of the person who stutters and the therapeutic setting, including in school or in group therapy.
As we discussed, I was happy to hear that the therapists understood that focusing on these parts of therapy changed the goals and markers of success. And thus, creating a need to work collaboratively with parents to explain the approach, which is not fixing fluency, to ensure the person who stutters is not receiving mixed messages in their home life. Each therapist noted their work with parents as one of their biggest challenges, given the limited time they have to build the relationships. It was great to see the problem-solving and ideas come alive within the session, with several therapists explaining the proactive ways they draw parents into therapy or establish communication between therapy sessions.
Transitioning to ARTS, we walked through my progression of healing to guide the discussion. I began with an overview of a day in the life of an ARTS group. I focused on the importance of both Vivian Sisskin as more of a coach than a therapist, and the group members as models to show how the therapy worked and what I could expect in the future if I stuck with it. These were important aspects because it was Vivian and the other group members who taught me both the language to describe my experience of stuttering—shame, fear, and avoidance—and how to identify and feel how I stuttered, which were two perspective-changing realizations.
The other somewhat controversial aspect of ARTS that I chose to address was the concept of stuttering modification, two words that are rarely used anymore. Again, the key factor was the intent of modifying, as explained by Vivian, which was to uncover my natural, less struggled pattern to stutter more efficiently, rather than layering on secondary behaviors to make it more fluent. Another reason why intent matters with modification is because what essentially happens is a repurposing of fluency-shaping’s vaunted tools. The tools, propped up by the underlying positive intent, were the means through which I developed a more open, less struggled stuttering pattern with minimal internal reactivity.
The questions that came were interesting because my perspective on how ARTS truly helped guide my change is being informed by what I’m now experiencing as a father with a son who stutters. I can see how therapists must tailor their approaches to clients and parents differently, and how what I learned in ARTS is applicable to how my wife and I are navigating the development of our son’s stuttering pattern. A therapist asked, “Can you tell me one thing you’re doing that you think is helping and one that’s not?” This was easy: 1) building emotional intelligence to help him describe and express his overall feelings and emotions, 2) staying present in his struggled moments without dissociating [which is something I’m working on], and 3) we repeat back his struggled words to validate that he’s being heard. And what we’re not doing is telling him anything is wrong with the way he talks. While I recognized that this is a unique opportunity, these are the hallmarks of ARTS used with adults, again calibrated to the experience of each person who stutters.
Lastly, I shared a quote from the great Dr. Joseph Sheehan—who set the foundation for ARTS—in which he said:
“Yet even acceptance must be experienced as a mixture of roles, for every stutterer is a part-time normal speaker, and must learn to adjust to himself as a fluent speaker as well.”
I shared my experience of this all-too-common reality that while fluency is no longer my goal, I am more fluent than I’ve ever been and more comfortable existing in that awkward space of ‘wait, shouldn’t I be stuttering now’ when I suddenly notice spontaneous fluency without thinking about it. As Sheehan stated, I healed enough of the reactivity to allow my stuttering to flow as it may—and I know, now, that it’s truly okay to stutter.
Deep Dives on ‘Stuttering’ Books & Resources
In recent years, I have taken my self-study efforts beyond the traditional stuttering books and resources because there are so few that satiate my appetite for ways to articulate my experiences. I dabbled in this while writing Every Waking Moment but that process was too overwhelming to fully understand how venturing down related rabbit-holes could enhance my knowledge base on stuttering. So, post-self-publication, I dove into the deep end, finding the next book referenced in the last until I was stringing together concepts that, on the surface, had no connection to stuttering yet had everything to do with it. Every book I read became about ‘stuttering’ in its own way, as if the authors had it in mind as they wrote.
Reading through a stuttering-informed lens as you’re processing the worst cases of abuse, neglect, and trauma seems blatantly unfair to those dire lived experiences. However, lightbulb after lightbulb kept flickering, energizing my curiosity to find an application to healing from stuttering.
And I keep finding connections because when you analyze the experience of stuttering from moment to moment, childhood through adulthood, you get a combination of the following topics: social anxiety, fear, shame, trauma, anger, formative development, addiction and recovery, habit formation, resilience, efficacy and agency, narrative storytelling, codependence, mental health, self-help, counseling, different therapeutic modalities, etc. Thus far, I’ve paired resources on these topics with books by the renowned stuttering therapists dating back to the 1800s to provide myself with a well-rounded, self-administered education on stuttering. The through-lines are indisputable.
My most highly recommended books on ‘stuttering’:
Journey Through Trauma, Gretchen Schmelzer;
Complex PTSD: From Surviving to Thriving, Pete Walker;
Shame: The Power of Caring, by Gershen Kaufman;
Self-Efficacy: The Exercise of Control, by Albert Bandura;
Atomic Habits, by James Clear.
Session Three – Change
The final session was different this time around because we stayed on track, and didn’t have the ARTS discussion spill over. As a result, it gave us more time to sit with both the process of change and a discussion on the therapists’ key takeaways from the book. Instead of trying to summarize them neatly and concisely, I’ll share my notes as I took them down.
- Parent programming and involving key stakeholders;
- The cycle of trauma and building a sense of agency;
- The idea of stuttering being a journey and messaging that to parents while meeting the client where they are;
- Reducing the amount of trauma from a young age, i.e., preventing a long journey;
- Using the book as a tool with clients;
- The importance of understanding my whole story, different parts and phases of the journey, and perceived failures;
- Knowing that therapists are often coming into the lives of their clients while they are already amidst their journey, and are only one part of it;
- Helping clients build connections within their lives;
- Redefining communication ‘wins’ and sharing them;
- Meeting parents where they are and involving them in therapy;
- Providing a space different from that to learn tools, and instead work towards fostering a place to talk about struggles and successes;
- The use of the propeller metaphor to set a vision for a personalized therapeutic approach, in which speech therapy is but one propeller of change along with all the other aspects of life;
- Where are the dads? I only ever see the moms in therapy—working to include both;
- IEP Meetings—no more writing reduced disfluency goals;
- Stop starting therapy with speech work, spend the necessary time developing trust;
- Advocacy and self-disclosure modeling—helping parents navigate this important part of change;
- Parallels to people who have strokes—self-isolation and the wonder about what they could do if they didn’t have a stroke;
- Sharing key takeaways from the book with colleagues, rewriting inherited IEP goals, and changing approach with parents;
- Understanding of the traumatic impact of the through-life journey and the importance of nurturing relationships;
- ARTS;
- Words and putting language to the stuttering experience is important, as well as connecting clients with other people who stutter;
- An appreciation for how long the journey to the early stages of self-acceptance took and how not all of it was because of the work I did in speech therapy;
- Involve clients in goal setting and parents in the therapy room;
- Motivation to delve deeper into learning about stuttering and how other therapists work with people who stutter.
These are tangible takeaways. They weren’t breathless or simply praising the book either—I believed each and every one of the therapists were going to change some aspect of how they supported people who stutter. It was hard to not feel excited about the energy they brought to this book club and the potential that lays ahead for them.
Take another couple minutes to read through those takeaways. Think about how they apply to your work or the therapy you’ve had yourself and imagine how different an experience the next kid or adult will have that gets to work with any of these therapists. That is the purpose, for me at least—to feel hopeful for the future of therapy for people who stutter.
I look forward to staying in touch and welcoming the next group of speech therapists to the fifth running of the book club soon!
Every Waking Moment 