Perspective Disclaimer I am not a speech-language pathologist, nor do I play one on the internet. There are many fantastic SLPs already doing wonderful work who are waiting to work with we who stutter. This three-part series uses and analyzes my journey through school-based speech therapy as a case study, and includes my history from kindergarten to college, lessons learned for how it helped and impeded, and recommendations on how to improve the through-school therapy process. These reflections come from many years of making sense of my experiences, and are by no means a replacement for rigorous academic study, professional experience, or on-the-job training. However, the walk-in-my-shoes perspective aims to inform and complement actual speech therapy and other complementary healing practices.
I became aware of my stutter at five years old when I was in pre-school. Of course, I didn’t yet know it was stuttering but I knew something was wrong.
The next year, a nice woman began to show up at my classroom door to walk me down a long dimly lit hallway to what became known as “speech.”
In these first few years of school, I don’t recall much about how I stuttered in class or what we did in speech, aside from the regular vision and hearing tests, which they probably did to figure out what was wrong with me.
However, I do viscerally remember the concern, largely from my mom, about the way I talked. It began with my refusal to talk on the phone, to call my friends to play and to answer calls from my grandparents. For whatever reason, the terror I felt on the phone is what has stuck in my memory as when my descent into the depths of stuttering began.
I spiraled out of control from there. I started self-isolating after what had been an outgoing early childhood. By fourth grade, I was attending two days of speech per week and displayed what I now understand as full blown avoidance behaviors, though I have no recollection of what I did with my therapist.
This was also the time when my mom started to intervene with my teachers to get me out of class participation. The teachers made everyone in class participate, and I would sit waiting, in horror, for my turn while all of the other kids spoke or read aloud. Most times, I tried so hard to speak that I’d get these unbearable headaches that settled in when I was done. Opting out of class participation was a turning point in my stuttering development.
Midway through fourth grade, we moved to the suburbs and I started at a new elementary school. Speech was different there. I would get pulled out of class and put in a line with the physically disabled kids from throughout the school and walked to the special education classroom where I sat playing with toys until the period ended. I was the only kid with a stutter in the whole school, and they didn’t have a speech-language pathologist. When my mom found out, she ensured that the district assigned one to the school to work with me. And, they did.
My vivid memories largely begin during this period. From fourth grade to sixth grade, speech was twice a week for 30 minutes, and every few months I took tests to chart my progress. I sat with the therapist in a room next to the library where we read words, sentences, and paragraphs until I became frustrated. When I did, I would snap at the poor woman, who was helpless to alleviate my distress. I say this because my anger—which derived from an inability to process all of my emotions and feelings—prevented me from developing a constructive connection with her. I wasn’t an easy child to work with regardless of whether she was even equipped to help me.
When I wasn’t making progress, my parents enrolled me in a fluency clinic at a local college. I remember my mom telling the clinic director to pay special attention to my fidgety hands. At eight years old, the tension from my forceful stuttering was already physically manifesting in my behavior.
This clinic was where that I learned the fluency shaping tools and became well-acquainted with the therapy chambers and their two-way mirrors. Silhouettes of graduate school clinicians gathered behind the mirror to get a glimpse of the kid with a severe stutter, like I was a rare zoo animal. I wanted nothing to do with the tools, and my anger made it known.
I spent four long years there and had mastered the tools within the confines of the chambers, but did not have the courage to use them in public. I knew I had long since missed the window for spontaneous recovery, in part because I overheard my pediatrician tell my mom as much.
I continued on with speech in school through sixth grade, though, by this age, I could no longer control my frustration to speak. Since I wasn’t improving, speech became my get-out-of-jail free card from class participation. I didn’t even try to talk in class or anywhere else besides in the comfort of my home.
Opting out of class participation symbolized the vice grip that stuttering had on my life, and was an avoidance behavior that I would use through college. When I started middle school, I took responsibility from my mom for using the card with each new teacher. I called it my stuttering pitch.
Instead of my mom asking the teachers to allow me to opt out, I presented the pitch myself by stuttering and blocking through as much of a plea to get out of class participation as I could manage, usually after the first class period of each term. I’d start with something like “I have a speech problem…”—because I couldn’t say any variation of “stutter”—and then black out from the stress of the moment. Again, I never faced any of my fears of stuttering in school.
Panic sent my parents in search of a formalized private therapy program that could fix my stutter right as I finished seventh grade. They were desperate and willing to pay whatever it cost, and they did even when they couldn’t afford it.
I was admitted to the Harold Starbuck Fluency Clinic based at the State University of New York at Geneseo. It was a four-week intensive fluency shaping program during the summer. I cried myself to sleep the night before I went. At 13 years old, I was forced to grow up fast. I lived away from my family, in a dorm room on campus, and attended therapy from 8:00 am to 4:00 pm every day. To say that this was a formative experience would significantly understate the impact the four weeks had on my development, let alone stuttering.
At the clinic, I further reinforced the tools and achieved fluency in the chambers again, but lagged behind in transferring what I learned to the real world. I relapsed two weeks after arriving home. (This experience could be its own chapter, but suffice it to say that I began to realize that I would stutter forever following my failure at the clinic.)
When I started eight grade that fall, my mom made an effort to get the school speech therapist to use the Starbuck Clinic manual during my two 30 minute sessions a week. She wanted me to keep up the momentum from the summer program and ensure I was getting similar instruction, but it was obvious to me that she was secretly freaking out about my quick relapse. This didn’t go well.
There was a meeting between my mom and the principal, speech therapist, school psychologist, and other district officials to discuss the need to provide me with adequate support. This was when I was granted an Individualized Education Program (IEP), which stated that I continue to receive two speech therapy sessions per week. However, to me, it legitimized my get-out-of-jail free card. And, my speech therapist was gracious enough to work through my Starbuck Clinic manual with me during my sessions.
Therapy in school still meant playing board games, reading sentences and paragraphs aloud, and surrendering to the quarterly tests to confirm my severe stutter. In the meantime, mom had called one of the clinicians from the Starbuck Clinic for private in-home therapy sessions. Once a week, we made the hour-long drive to the clinician’s house where I worked on the tools, made practice phone calls, and further deepened my anger and shame.
As I started high school, I hit rock bottom. For each of the two summers following the Starbuck Clinic, I attended the program’s two-week refresher to try to salvage some fluency. These repetitive failures created the perfect storm of emotions that sent me into the worst depressive episode of my young life—and my entire life for that matter.
I vowed that I was going to fix my stutter and become fluent, once and for all. When I started high school, I quit the football team to focus on practicing the tools alone in my basement until I achieved fluency. Obviously, in hindsight, this was an impossible effort.
For two weeks, I locked myself in the basement. I would practice the tools for a couple minutes and then would pace back and forth, despairing in wonder over what I could do to make my miserable existence end. Interpret that as you will, but my parents had seen enough. They called the Starbuck Clinic counselor, who was both a person who stutters and a school psychologist, to come and pull me out of the depths. He saved my life.
While this was happening, I started with a new speech therapist in high school who arranged with my mom to continue working in the Starbuck Clinic manual and tools during my twice a week sessions. My therapist was compassionate and patient as I struggled to process my emotional turbulence while I came of age with stuttering. She became my advocate in school and met often with my teachers to obtain their commitments to my IEP.
The only challenge to my IEP and pitch came in tenth grade when my English teacher made me video record a presentation instead of doing it in class or opting out altogether. I recorded it and played it with him after class. He gave me a failing grade, which sent my parents on a rampage. They held a meeting with my English teacher, speech therapist, and principal to discuss how it was handled. While my IEP overruled my teacher, he wrote a sharply worded letter recommending that I start to do presentations and face my fears. (If I had only heeded his request…)
As for speech, it became a safe place to be when I was having a hard time being anywhere else, which was all I needed at the time. There was no real chasing of fluency during the sessions.
By junior year, I had become synonymous with my stutter—trapped inside without an escape. It was then that my parents made their last herculean effort to find me some relief—the vaunted Speech Easy. Naturally, I was the perfect candidate. When I used it for the first time, the delayed auditory feedback was like music to my ears. Instant fluent speech flowed from my ear and out through my mouth. However, at school, I got headaches from its superhuman amplification, and was asked by my classmates if I had a hearing disorder, which was all I needed to give up on it. I stopped wearing it at school after a few weeks, much to the dismay of my parents.
Senior year speech was still somewhere that I could just be. I quit formal therapy the year before when my mom had another clinician from the Starbuck Clinic come to our house for private sessions. It was part of an all-out effort to get me to merge the tools with the Speech Easy during both my in-home and school-based therapy sessions. Two hours across three sessions per week. I quickly gave up, resigned to let stuttering win…forever.
And that was the end of my speech therapy journey, or so I thought. For we who stutter and attend therapy in childhood, the possibility of returning after quitting hangs ominously over us like a storm cloud as we wonder, “could I have tried harder?” As luck would have it, my freshman year orientation professor was a person who stutters. The professor—a Dieffenbach procedure survivor—offered to drive me back and forth to the fluency clinic at a local university. We shared the awkward hour-long car rides for four semesters before I threw in the towel, unable to tolerate the tools any longer.
School-based speech therapy was not speech therapy, by any sense of its intended purpose. None of the therapists specialized in stuttering or had experience working with children who stutter. And yet, the six that I saw from Kindergarten until the end of high school helped me more than they will ever know. I do not blame them in any way for being unable to fix my stutter.
I say this because my therapists became my advocates. While they were advocating for the opposite of what would’ve been best for me—to excuse me from facing my biggest fears—they were a big part of my support system as I struggled through my formative years. This may not seem like enough, but when viewed in conjunction with the rest of my journey through stuttering, it was more than most receive.
Of course, I cannot deny that many aspects of my life could have been different if the school-based therapists were skilled in cognitive-behavioral therapy, social anxiety remediation, and stuttering modification.
Although I have already written at length about each phase of my therapeutic journey in my upcoming book, I was still able to pull out new insights that could be of use to school-based speech therapists and possibly those going through it. Parents of kids who stutter who may be seeking to demystify the through-school process of speech therapy could also benefit, as some of the same dynamics that I experienced still exist almost 20 years later.
So, what did I learn from this review? The following 10 insights summarize the overarching takeaways from my school-based speech therapy journey. They are honest and direct, yet what needed to be put down on paper for others to understand.
- Tormented: One word to describe my experience. It means to experience severe mental or physical suffering. Traumatized fits as well. I view the totality of my journey, to include school-based therapy, as the measure of what it did to me, never solely through its individual parts.
- Whole Child Approach: I alluded to it several times, but it’s worth being explicit here—my physical stutter was only a small part of why I needed to attend speech therapy. I’m convinced that if the seeds of self-acceptance had been planted and watered from the start, I would have blossomed years earlier than I did. My story shows that I struggled much more inside—cognitively, emotionally, and physiologically—than I did on the outside, actual stuttering. The only focus was on my speech instead of what fueled my struggled stuttering.
- Stuttering Pattern: In all of the writing and analysis that I have done on my journey, it still surprises me how little I can remember about my actual stuttering pattern throughout school. I know that it was mostly long, tension-filled blocks with a full repertoire of secondary maladaptive behaviors but I cannot recall any specificity. Other than, how it made me feel. I felt every waking moment of it, and can still dig up the memories after 30 years. What is felt gets remembered, what is numbed gets forgotten.
- Helpless Supportive Parents: All they wanted to do was help their struggling son. But, I was doomed from the start because the best option early on was my pediatrician. Parents are important to the support networks of kids who stutter, and, like me, get frustrated when therapy doesn’t work. I don’t place any blame on them for the gauntlet of therapy they put me through. (More on parents and the home environment in the third article of this series.)
- Accountability: I cannot hold my school-based speech therapists accountable for not providing adequate therapy because they did not specialize in stuttering nor have the requisite training. Since most schools do not have more than one child who stutters, it further limits the exposure that therapists need to best learn how to help future students. This is, in part, why the system—both the profession and academic programs—is taking so long to change.
- Private Therapy: Unfortunately, my private therapy resume reads like those of many others who stutter—trial and failure, after trial and failure in search of something that will alleviate the distress. My mom sought to align my private and school-based therapy efforts, which should be a best practice. But, there would have had to have been a willingly participant in such a collaboration, and I was far from that.
- Fluency Shaping, a.k.a. the Tools: I used to bottle up so much anger towards the tools. However, as of this writing and nearly five years after my last therapy session, I finally understand the role that the tools were supposed to play in my stuttering pattern all along. They should never have been the first, second, third, fourth, or even fifth option, but rather a means to help me stutter more efficiently and softer. The tools were always meant to help show my stuttering, not to hide it.
- The Right F-Word: It wasn’t my dysfluent speech that held me back. It was actually my social anxiety, of which I never attempted to address. (I will discuss social fluency and recommendations for how to cultivate it in school in the second article of this series.)
- Self-Acceptance: When I was growing up, it wasn’t a thing yet in the stuttering community. Well, it was but it wasn’t widely discussed like it is today. Children who stutter growing up today have many more opportunities to learn the value of accepting their stuttering, and there are increasingly more self-help organizations that are helping them feel less alone. (I will discuss this at length in the second article of this series.)
- Self-Help: I did not mention that I attended one National Stuttering Association support group meeting right after the Starbuck Clinic. I wasn’t ready for it yet, or really mature enough to understand what its impact could have been. (More on the importance of the stuttering community in the third article of this series.)
No journey through school-based speech therapy is the same, just everyone’s experience of stuttering is different. However, mine is very similar to many others who have passed through the system. Similarities lead to change. In the next article, A Letter to the SLPs of My Past, I will take the insights from my therapy history and offer feedback—along with some apologies—to the speech therapists that I worked with in school.
Surgery for Stuttering