Reflection: Every Waking Moment Book Club

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In January, the wonderful speech-language pathologist Ana Paula Mumy and I launched the first two iterations of the Every Waking Moment Book Club. We had one three-session club tailored to school-based SLPs, and another for clinical SLPs, with both eligible for continuing education credit. Each of the three two-hour sessions were based on the three parts in the book—AfflictionTranscendence, and Change—which included an introduction of the key terms and topics, discussion, and a lengthy question and answer section. 

This was an opportunity that I had in the back of my mind as I neared the end of writing the book—the possibility of helping SLPs on the front lines of supporting we who stutter understand the changing nature and needs of stuttering therapy. However, I was not prepared for how much I would learn from this amazing group of 26 SLPs. What was clear, though, was the power and potential inherent within the collaboration between SLPs and PWS through the sharing of the first-person experiential aspects of stuttering, a partnership that I plan to help facilitate going forward. 

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

During the first sessions with each group, we reviewed my descent into the afflicted state of stuttering throughout my formative years. To guide the discussions, Ana Paula and I used terminology and themes from the book, such as affliction rather than disorder, uncertainty and possibilitytrauma, and healing to overcome the side effects of stuttering. 

Before we launched into the discussion, Ana Paula asked the SLPs to share a brief snapshot about why they joined the book club and their initial impressions of Part I. A listing of some of the responses best conveys their responses:

Why they joined the book club:

  • “I don’t know any real people who stutter.”
  • “I need more [resources] to learn from than what I’ve read or that is available in textbooks”
  • “I want to be able to jump at the opportunity to take the stuttering referrals and not be the SLP who says, ‘No, not me, give [the child who stutters] to someone else.’”
  • “There are PWS on waitlists because there is no one to help them.”
  • “I learn more from PWS than I did in school, simply by being with them.”

Initial Impressions:

  • “I felt what it was like to stutter.”
  • “I learned that stuttered words come from the inside out, not outside in.”
  • “I really started thinking about ‘If not fluency, then what are our IEP goals?”
  • “It became clear to me that fluency is a performance and acceptance[-based therapy] is connection.”
  • “I began to see the inherent constraints within the school systems through the use of outdated eligibility criteria for who qualifies for service and that we have canned care for individualized experiences.”
  • “I saw the importance of helping kids learn to advocate for themselves.”
  • “I learned the mental health components of stuttering”

Using the terms, themes, and impressions, we began by walking through my internalization of the cognitive, emotional, and physical side effects of my early formative experiences of stuttering. We discussed self-isolation as the early indicator of the inner turmoil that I felt and how my secondary behaviors were the signs that I was physically struggling to deal with the side effects, to include my fidgety hands and quick to anger reactivity. 

We transitioned into my early speech therapy resume by unpacking the impact of successive failed attempts at fluency-shaping and how they forced my formative development to occur under distress. I shared my take on how the expectations were unachievable and the outcomes unfathomable because I was asked as a child 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 put this in perspective, from age 7 to 19 I shared that I learned how to avoid stuttering and cope with the inner turmoil of doing so. 12 years without a means to alleviate what I thought about and how stuttering made me feel inside. I emphasized this reality to drive home the important of breaking the cycle when viewing therapy across childhood. 

Another focus I conveyed was trying to identify what’s in the way first before starting therapeutic methods for the physical act of stuttering. Listening with your eyes, and ears, sets the roadmap for where to begin providing care. I used the description of how I presented holistically in terms of my physical observed presence, overall mood, and willingness to engage in conversation with my SLP. I was a frustrated, angry, and defiant CWS who couldn’t gain enough separation from the side effects of affliction to focus on speech therapy.

A quote from a clinical SLP summed up these first sessions when she said, “We know better, we can do better, we’re a helping profession, not a hurting profession.”

Session Two – Transcendence

The second session with each group focused on readiness for and the process of change, using my experience with Avoidance Reduction Therapy for Stuttering (ARTS) to guide the discussion. Within this context, 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]?”

Collaborating with PWS to cultivate social and communication skills was the overarching answer to those therapy-defining questions. I broke down the significance of storytelling to develop social skills while dating to emphasize how I confronted readiness to re-enter therapy despite years of failure and trauma. And, relatedly, once in ARTS, that I didn’t start with speech work

The discussion began with an overview of a day in the life of an ARTS group using my experience. 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. 

Some other key aspects of ARTS we discussed were crafting specific speech assignments for outside of therapy, the repurposing of the much-maligned fluency-shaping tools, and, of course, all things open stuttering. 

A common question was “how do you get PWS to start ARTS without an idea of what they’re aiming for?” We focused on two factors, the power of group therapy and the enigma that is self-acceptance of stuttering. First, immersing myself in a group of PWS and seeing, hearing, and feeling their moments of stuttering and experiences confronting it changed my perspective of what was possible for me. They faced their fears one by one and survived to come back the next week and describe what happened. Witnessing this progression only encouraged me to push my limits and understand what I had to do to get where they were. 

Trusting the Process of Change in Stuttering Therapy

Throughout the three sessions, there were many questions about progress or realizing change in therapy. The answer is always the process. By this I mean how I forced my relationship with stuttering to change in all aspects of my life. 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. 

To do this, I broke down my ARTS assignments into manageable parts to redefine my definition of success, and pursued them with a sense of urgency knowing that my life literally depended on attempting them. The difference in this approach was trusting this process. I was making more progress than I realized, and that “relapse” was no longer a return to the beginning, it was a false start and an opportunity to try again from a new reality of confidence and momentum. However, this is only realized from a place of safety with some distance from the traumatic state of stuttering, which came after two years into my ARTS journey. 

Second, we explored self-acceptance using the oft-used phrase “It’s okay to stutter” because it helps communicate to SLPs what their role is in what should be a partnership with PWS. Using my work with Vivian in ARTS as an example, I explained the story from the book about whether anyone ever told me that it was okay to stutter. It was a profound question that I felt deeply at 

the time, but also believed that Vivian was going to guide me through therapy until I figured out what it meant for me. 

This was a break-through of sorts for the groups in understanding the need as SLPs to develop trust with the PWS under their care and the importance of following through on their word and actions.  

After the school based SLP session, one of the participants stayed on Zoom to share their reflections from the book thus far based on my description that night of how I was describing the approach I was taking with my son who had only recently began to stutter. This was a light-bulb moment because it was the first time I had thought about trauma prevention in therapy with CWS. It became evident in my characterization of what my wife and I were doing and what we weren’t going to do. I said, “Our goal as parents is to keep his incredible energy and light alive, and to not let the switch of affliction flip on.” I’m still figuring out exactly what this translates to in terms of actionable steps for us as parents, but it set my perspective in a new direction. I will write about this in the coming months and years as it unfolds in my life.

Session Three – Change

The final sessions were about taking actionable steps going forward as inspired by the analysis of my journey in Part III. I used the propellers of lasting change—AwarenessActionPerspective, and Social Connection—to show my progression through healing. This offered the SLPs a chance to weigh in on the nuances from my story that opened their eyes to something new about the nature of stuttering and healing, such as the layers of reactivity, the seven decisions in a moment of stuttering, and social fluency. 

However, the highlight of the final session for me was the Values in Action exercise in which 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:

  • ARTS: During our discussions about ARTS, an interesting point of learning arose surrounding role transitions of SLPs while applying the therapy. It centered around what made ARTS different than fluency-shaping and why it worked for me. I’d obviously thought about these questions before but not in the way the SLPs guided my responses. Their questions walked me into a response that boiled down to the handing off control of one’s therapeutic journey from SLP to PWS. Vivian had slowly equipped me with the ability to assess my needs, plan actionable assignments, and accurately evaluate my performance using constructive feedback lens—all of which had been part of her tailored approach as she led me through my group therapy experience. She facilitated the collaboration between SLP and PWS within the group, and did not force a dictatorship of instruction. 
  • The Totality: …of the stuttering experience. My primary goal of writing came across in these final sessions—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.
  • Counseling and Interpersonal Skills: For many of the SLPs, their first step was going to be to learn more about counseling and cognitive-behavior therapy, in part to help them answer the question of how and where to start therapy for the side effects rather than the physical act of stuttering itself. Empathetic listening and observational skills were a common component. They understood the need to broaden their approaches beyond developing a plan to fix a stutter to consider the need to heal the inner life of stuttering, often times before turning to an attempt at modifying the stuttering pattern. 
  • Parents and Support Networks: Social fluency was probably the most important theme I conveyed throughout the book club because, to me, it is foundation from which healing one’s relationship with stuttering thrives. Think “if not [verbal] fluency, then what?” Developing social and communications skills at any age is the what, and is where parents, family, friends, allies, and, most importantly, SLPs can influence the trajectory of healing for PWS. Each SLP grasped the significance of their role in helping their clients to not only cultivate the social skills that stuttering stunts, but also to help grow their social support networks. Chief among the responses was a renewed focus on collaborating with parents. 

“I am retooling how I approach stuttering therapy and working with PWS.” Each SLP said some variation of this intention to change. Listening to them made every moment writing about my journey worth it. 

I hope you’ll join a future running of the book club! Thank you to Spero Stuttering for offsetting the costs of this CEU opportunity, and helping to make it accessible to all who are seeking a unique, experiential learning opportunity.

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