By In September, the ever-passionate speech-language pathologist Dr. Ana Paula Mumy and I launched the third iteration of the Every Waking Moment Book Club. This running, the three-session club was tailored to school, private, and clinical-based SLPs, and was eligible for continuing education credit. We had 20 SLPs who showed up eager to participate and dive into the lived experience of stuttering. Each of the three two-hour sessions were based on 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.
As I said with the last two groups, this was yet another opportunity that affirmed my belief in the need for both direct engagement between SLPs who are seeking to understand and change the nature of stuttering therapy and collaboration with people who stutter for first-person experiential learning. It was clear from the energy throughout that we were learning from each other, feeding of the collective curiosity, and making connections applicable to our personal experiences with stuttering and therapy.
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 SLPs.
Session One – Affliction
The first session kicked off with an open forum for the participants to share their initial impressions about Part I, Affliction. In their words, what they felt was a very-detailed, nitty gritty, authentically relatable, raw, uncensored, eye-opening, vulnerable, honest, ‘feel all the feels’, moving, beautiful walk-in-my-shoes narrative of living with stuttering. Several appreciated the trauma-informed, mental health perspective rather than just a focus on speech, while others liked how the deep learning was taken to a new level, with one SLP admitting that it was helping her be a better parent, aside from what it taught her about stuttering.
From this discussion, we used the key terminology from the book, such as affliction rather than disorder, uncertainty and possibility, trauma, and healing to overcome the side effects of stuttering, to explore my childhood experiences. The group seized on the belief in healing and overcoming the affliction of stuttering rather than recovery and the controversial ‘overcoming stuttering’ debate. I emphasized the distinction as we walked through the two states of stuttering in which we can live, the struggled, traumatic state or the elusive state of self-acceptance and collaboration with stuttering.
This naturally flowed into an exploration of my internalization of the cognitive, emotional, and physical side effects of stuttering during my early formative experiences. I emphasized that self-isolation was a byproduct of my inability to cope with the inner turmoil, which led to me coming of age under distress. A key point I stressed to the SLPs was that it is unfair to ask a child, as I had been, to grow up and take responsibility before I was 1) ready, 2) [cap]able, and 3) allowed to experience the innocence of childhood development and learning.
To their credit, the SLPs saw the need to address the subconscious, inner reactions to stuttering, recognizing that the daily stress exposure sets the stage for how a child learns to stutter. It was heartening to hear them consider what they could do to interrupt the cycle of affliction and trauma earlier in a child’s development, to the point of understanding why a focus on fluency with children was not the answer.
The conversation shifted to a key juncture in the cycle that I am only just beginning to understand—how, why, and when the seeds of shame begin to grow within the lived experience of stuttering. At the time of this session, I was exploring shame through self-study and its impact on my journey, which I wasn’t quite far enough along into healing to include in the book. However, it became clear to me as we discussed the topic that shame spawns from one fundamental relationship, a child’s connection with their parents or caregivers.
The seeds of shame are planted by the parents’ reactions and subsequent actions to address the way their child talks, whether their intentions are positive or negative. Let me be clear, parents 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 points out that they 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.
Deep, I know, but it sets the stage for a focus on the importance, for SLPs, of working in collaboration with the parents or caregivers of children who stutter. Explaining the therapeutic rationale of acceptance-based speech therapy over fluency shaping, developing an understanding of the child’s home life and environment, and building trust and rapport with those people who have the most influence over the child is paramount to generating forward momentum in therapy.
I spent some time overlaying the dynamic with my parents, emphasizing that it was not their fault and how necessary it was to approach this unfortunate reality with compassion for the challenging circumstances they faced in trying to help me. But we must have the strength to face it, to illuminate the severed caregiver-child connection, and thoroughly seek to understand the wide-ranging impact of how the “fixing” mentality indoctrinates young children who stutter to the process of internalizing shame, and, thus, the traumatic state of stuttering whereby they have nowhere to turn in their immediate environments for protection.
There was a consensus that SLPs must hone their counseling skills. The group talked about the importance of building trust both in the therapy room and with the parents to earn their support in between sessions, whether through one-on-one meetings, e-mail updates, or by connecting them to other parents of children who stutter or the stuttering community. One participant expressed hope that the field of speech-language pathology gets better at working with parents.
Session Two – Transcendence
The second session focused on readiness for and the process of change. 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]?”
At the end of the first session, there was a constructive exchange between a few participants in the chat about accommodations. Accommodations are something SLPs, no matter the focus or role, will encounter in some way, and are always acceptable. However, a key factor is intent. Accommodations should not be to opt out of all public speaking. Instead, we discussed how to craft a strategy using a progression of achievable and specific steps for working towards social and communicative goals. The SLPs brainstormed ways in which multi-layered strategies developed with their clients incorporated into Individual Education Plans in school or their everyday lives that were tailored to the child or adult’s appropriate readiness and comfort levels could build capacity for holistic change.
Interestingly, this discussion changed the entire trajectory of the session. After a brief review of my initial steps in my journey, we jumped right into the “then what?” of the “If not fluency…” question, which included a breakout session for the SLPs to directly engage with each other.
First, though, we talked through the underlying question of how many kids [and adults] really know what stuttering is? Learning about stuttering, how you stutter, and the language to describe your experience of it were several of the recommended initial steps for starting a holistic approach in therapy. The SLPs noted that it was their responsibility, as the experts, to provide little nudges and plant the seeds for a choose-their-own-adventure exploration of their client’s experience of stuttering. A “see what sticks” or what resonates most was widely agreed upon, with a few of the SLPs sharing examples from their work.
This idea of individualized assessments transitioned us into a broader conversation of solutions-focused approaches that consider the clients phase and readiness for change, past therapy experiences, and current environmental influences. I was impressed by a pointed hypothetical question that tied back to our prior focus on working with caregivers. The question was: Who is this [stuttering] bothering?
It struck a chord with me because of my own experience riding the rollercoaster of my son’s onset of stuttering. The therapist my wife and I met with without our son asked similar questions, “has he said anything to indicate he knows that what he’s doing is stuttering or whether he’s aware that the way he talks is different?” These questions collided, which I shared with the group, and we discussed the need to assess how the client is perceiving their own experience of their stuttering, as well as the perceptions of others, whether they are communicated to the client or perceived as micro-aggressions.
With these topics in mind, we broke into two groups of ten to further discuss the “then what?” of applying these themes in speech therapy sessions. The group I observed shared many practical ideas for implementing the topics reviewed thus far; however, I broke the rule of not participating for one idea in particular because I had learned it well in my own journey.
One of the SLPs raised the process of stripping away all the secondary, maladaptive behaviors that we who stutter do to hide or make our stuttering more fluent. I nearly jumped out of my chair to weigh in! This was an important point to highlight because it’s the reality people who stutter are likely to experience when they cross over into the latter stages of change. What do I do with all the extra brain power now that I don’t have to waste it on changing what I say and how I stutter? This is the goal—to have more cognitive, emotional, and physiological bandwidth to live the life you have been desperately chasing after while struggling to breakthrough to acceptance.
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’:
1. Complex PTSD: From Surviving to Thriving, Pete Walker;
2. Shame: The Power of Caring, by Gershen Kaufman;
3. Self-Efficacy: The Exercise of Control, by Albert Bandura;
4. Atomic Habits, by James Clear.
Session Three – Change
In the third session, we walked through my progression of healing, using my experience with Avoidance Reduction Therapy for Stuttering (ARTS) 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.
It was here that questions came about assessing progress and realizing change in ARTS as an adult, following similar questions in the previous two sessions. The answer is always trusting the process. By this I mean how I forced my relationship with stuttering to change in all aspects of my life, i.e., using the propellers of lasting change—Awareness, Action, Perspective, and Social Connection. The ‘how’, for me, is habit change. Physical actions I took to overwhelm my stuttering lens, such as facing long-held fears, avoidances, and shame-inducing situations, and watching what happened when I did.
As we concluded the session, the Values in Action exercise was again a highlight because each SLP shared what they learned from the book and the book club experience. Their responses inspired me in so many ways. While I can’t list them all, here are the overarching themes summarized as key takeaways:
- The Totality: …of the stuttering experience. My primary goal of writing was for the reader to feel stuttering. Stuttering is typically seen and heard, but the healing PWS must undergo requires those who hope to enable their holistic care must at least begin to understand the physicality endured across the lifespan. Physicality is a disruptive descriptor. To me, though, this is what I heard in the words of these SLPs describing the cognitive, emotional, and physically felt side effects of stuttering. This felt experience influenced their understanding of how they needed to adjust their approaches to stuttering therapy. Win.
- Parents: Involve parents. Educate parents. Connect parents of children who stutter with other people who stutter. “Provide a window into the therapeutic process…so they are not undoing what I’m trying to do [in therapy].” Perhaps, most importantly, working with parents to create a safe home environment where stuttering is affirmed, accepted, and encouraged. Win.
- Solutions-Focused Approach: The SLPs understood that they need to collaborate with their clients—and parents of children who stutter—to jointly come up with a roadmap for working towards their individual needs and goals. In these responses, I heard an interest in turning over more agency to the clients and allowing both the SLP and client a “figuring it out” phase instead of immediately working to alleviate the struggled speech. It was reassuring to hear the idea of transitioning to more of a coach than a therapist, like Vivian was during my journey. Win.
I have a stubborn defense mechanism undoubtedly from stuttering that makes it difficult for me to fully acknowledge the success of this iteration of the book club, and the impact that the book is having writ large. The first step is acknowledging this as the problem, and the second step is thanking Ana Paula for her willingness to host and volunteer her time, expertise, and support. The final step is thanking all 20 SLPs for their positive engagement and camaraderie throughout the three sessions. I appreciate your enthusiasm and commitment to steering the ship towards a harbor where every person who stutters can go for informed, compassionate support.
I look forward to staying in touch with you all and welcoming the next group of SLPs to the fourth running of the book club in the new year!
Every Waking Moment 