“I had passed on this monster to my child. This is the worst thing that can happen to you as a person who stutters – that you have passed on this genetic nightmare – because it’s your fault. I remember crying to my husband, ‘I thought he was perfect,’ and my husband said to me, ‘he still is.’”
I sat in front of my computer for hours wondering how to tell this story. It is difficult to put into words what transpired during the three-hour conversation I shared with Speech-Language Pathologist Lucy Reed. Reed is a person who stutters; a private-practice owner based in New Jersey who focuses on stuttering therapy; the daughter of a mother who stuttered; and the mother of a son who stuttered. The story Reed shared with me is one of generational pain, fear and shame related to stuttering. It is also one of redemption, love and the breaking of age-old patterns. It is a story about letting go and starting over in the face of unimaginable loss and hardship.
Reed grew up in a working-class suburb of Philadelphia and her family moved across the river to southern New Jersey when she was 12. The second child and only sister to three brothers, she began stuttering around the age of two-and-a-half. Stuttering was not a stranger to the household, as her mother was a covert and life-long stutterer, as well as her father’s sister. It was, however, something that was never openly discussed. Reed’s mother went to great lengths to hide her own stuttering, implying feelings of fear and shame about her speech that the young Reed picked up on. She observed that her mother would use tricks like stomping a foot before answering the phone, or saying the word “our” in front of her brother’s name to make it easier (“Michael” became “our Michael”).
Her first memory of stuttering is at four years old, on the first day of kindergarten. Reed remembers sitting at a table surrounded by her peers feeling terror and panic while waiting for her turn to introduce herself to the class. She has no prior memory of stuttering or talking about stuttering before this, but she had already developed deep-rooted fear and shame. “I remember feeling terror that when the teacher came to me, not that I was going to stutter,” she says, “but that she was going to find out this dirty, shameful secret I had about me that I stuttered.”
Over the years, fear of stuttering persisted and became a monster she couldn’t escape. Her older brother would accompany her to school in the mornings and her legs would shake the whole way there as she anticipated having to read out loud. She never told anyone about this all-consuming fear. Reed felt too vulnerable, defective even, because stuttering was bad and wrong. No schoolyard bully, teacher, or family member had ever outwardly expressed this sentiment to her. In her words, “I put the bad feelings all on myself.” Feelings that most likely stemmed from unspoken messages unintentionally conveyed by her mother. Reed intuited that stuttering should be avoided at all costs. Later in life, while reflecting on these early memories, Reed would come to understand that her mother was not only ashamed to stutter but may also have been ashamed to have a daughter who stuttered.
Reed did not have speech therapy as a child, but in the fourth grade her parents took her to see a child psychologist in an attempt to find a cause and cure for her stuttering. The psychologist encouraged her parents to get her a dog and to help her become involved with social activities such as Girl Scouts and the Craft of the Month Club. These eventual changes led to her improved self-confidence. Additionally, Reed realized that she could hide her stuttering in certain situations, particularly with people who didn’t know her or her history. Also, just as her mother before her, she developed tricks to avoid stuttering such as using starter phrases like “you know” and circumlocutions (talking around a target word). With the right situation and the right trick she could fake being a fluent speaker.
Her success in hiding stuttering with these avoidance behaviors didn’t last. In high school, Reed developed mononucleosis and then hepatitis, and stuttering resurfaced with a vengeance. She could barely utter a word without blocking and developed a fear of speaking. Her parents again sent her to a psychologist and then to a speech therapist.
A high school guidance counselor who was not aware that she stuttered suggested she attend community college and pursue animal science technology. Reed followed this advice. She obtained an associate’s degree and went to work in a lab, producing and analyzing animal culture cells. The job kept her out of the public eye, performing scientific duties that were largely non-verbal. She would have preferred to work as a vet tech, but she never even applied for the job, thinking that a veterinarian would not hire her because she stuttered.
By this point in time, Reed was also a young, married mother. At 21, she wed her first husband and gave birth to her eldest son, Kyle, seven years later. When Kyle was two-and-a-half years old, shortly before his twin brothers were born, Reed heard him stutter for the first time. They were out shopping, and she had prompted him to answer a question he had learned to answer: “What president is on the penny?”
Kyle replied, “A-a-a-a-a-Abraham Lincoln.”
Reed remembers coming home from the shopping trip in a hysterical and inconsolable state. “I had passed on this monster to my child,” she says. “This is the worst thing that can happen to you as a person who stutters – that you have passed on this genetic nightmare – because it’s your fault. I remember crying to my husband, ‘I thought he was perfect,’ and my husband said to me, ‘he still is.’” Reed had a fraught relationship with her then-husband but his choice of words in that moment were exactly what she needed to hear.
Kyle soon began to stutter more, and the shame of stuttering that Reed had absorbed as a child leached into his life too. Picking him up from her mother’s home one day, Reed witnessed him sitting on top of the kitchen table, chubby little toddler legs dangling, chatting happily to his grandparents. He was also stuttering, repeating sounds and words, and Reed’s mother began slapping at his legs saying, “Stop that! Stop that!” This was also how she believed her mother may have behaved with her at that age, and she was not going to sit by and watch her son endure the same pain.
Seeking help, she called a stuttering clinic at Temple University in Philadelphia, one that she had read about in an article in the local newspaper. The clinic was run by a specialist, Dr. Woody Starkweather, but had no current availability to treat her son. She was told by a receptionist that Kyle would be placed on a waiting list. In a fit of frustration, she slammed down the phone.
As a result of this first phone call, Kyle did not see a speech therapist. However, Reed and her husband followed the advice in the article about providing a fluency enhancing environment. They made accommodations at home as best they could, reducing questions, slowing the pace of their own speech, and demonstrating acceptance of stuttering. Further, they followed up with Kyle’s preschool teachers, talking with them about his stuttering and helping them understand how best to support his speech in the classroom. Each school year they would make a point to share this information again with his new teachers, who always seemed surprised, saying they had never noticed him stutter. They reported that Kyle was “quiet,” perhaps shy, but he had never been observed to stutter and was an active participant in class.
Then, when Kyle was in the fifth grade, she and her husband attended a Parents Day at his school. The students were taking turns presenting for the class. Kyle was waiting his turn, but beneath his desk Reed saw him bouncing and stomping his foot incessantly. He was physically demonstrating a severe level of anxiety and anticipation of stuttering. She immediately recognized it. His teachers may not have noticed, but she certainly did: Kyle had learned to be a covert stutterer.
Two things happened soon after. Kyle asked for help with his speech, and Reed also decided it was high time that she too sought help for stuttering. The mother-and-son duo enrolled at a private stuttering clinic and learned fluency shaping techniques that helped them to achieve fluency in the therapy room. The fluency shaping therapy was of some benefit to Kyle, but Reed found it difficult to transfer the success she found in the clinic to everyday life.
Despite her continued battle with stuttering, Reed became fascinated by speech therapy and by the prospect of a career shift. She had been attending school while working at the lab and raising her three boys, and had managed to obtain a BA in social science. Initially, she thought she might like to use her degree to become a social worker, but now she held a new aspiration. She applied for a master’s program in Speech-Language Pathology.
Coincidentally, she ended up pursuing graduate studies at Temple University under the mentorship of Dr. Woody Starkweather, the same stuttering specialist she had failed to connect with during Kyle’s preschool years. She began her coursework and worked up the courage to arrange a one-on-one meeting with him. It was an extraordinary first encounter. “I made an appointment with him and I’m in the bathroom practicing beforehand so I can show him how perfectly I can speak. Well, I go in and start talking with him and I was blocking on every word. I was sweating. My face was red. He’s just sitting there, laid back, looks at me and says, ‘You are the most avoidant person I’ve ever met in my life.’”
Reed was floored. She had not yet taken a graduate course on stuttering and had never heard about avoidance, including in previous speech therapy. “He said to me, ‘The reason you are having such a hard time talking is fear.’”
Dr. Starkweather began teaching her about stuttering-modification strategies, including voluntary stuttering. He asked her to deliberately stutter on every word. The tension in her speech melted away. Reed summarizes the primary difference between fluency shaping (the previous speech therapy she had received) and stuttering-modification approaches as this: Fluency shaping teaches you to speak without stuttering; stuttering modification teaches you to stutter more easily. She had spent her life trying not to stutter, which is what she thought she was supposed to do to survive in a fluent world, but it only brought more struggle and tension. Yet here was a specialist who told her to stutter on purpose and she was becoming fluent! The idea that it might be okay to stutter was like a lightbulb going off in her head.
She got online and found a stuttering chat group, where she connected with Peter Reitzes (co-founder and co-host of the StutterTalk podcast), then a student at NYU. Reitzes told Reed about the National Stuttering Project (now the National Stuttering Association or NSA), and she began reading their newsletter, Letting Go. The publication aimed to raise awareness about stuttering and to empower the stuttering community – something Reed didn’t previously know existed. Eventually, she became involved with the NSA, even going so far as to start her own chapter in New Jersey.
Reed had discovered a world where stuttering was embraced and she was determined to pass her findings along to Kyle. She introduced her son to the concept of stuttering-modification therapy and to the stuttering community. She also enrolled him in a Successful Stuttering Management Program (SSMP) to help him delve deeper into avoidance-reduction techniques. Along with his family, Kyle attended a FRIENDS convention. He also attended NSA meetings and conventions on his own to connect with other people who stuttered. In time, his fear and shame about stuttering disappeared and so did Reed’s.
She graduated from her master’s program and started working as a speech therapist in the public school system. Meanwhile, Kyle reached adulthood and joined the army, unearthing in himself a sense of purpose and belonging in the military. Although he had made significant strides with stuttering, hard times were swift to come. Just one year after enlisting in the army, Kyle was caught smoking marijuana with four other recruits and was sent home, given a general discharge. This event started a downward spiral from which he was unable to recover.
Back at home, Kyle became plagued by an addiction to alcohol and prescription drugs, as well as convictions for petty crimes such as shoplifting and reckless driving. He suffered from crippling anxiety, using drugs to self-medicate, but this wasn’t the first time Kyle had resorted to drug use to alleviate emotional pain. He had also been caught using drugs in high school, a time when he had struggled with his identity as a stutterer.
Kyle had overcome his negative feelings about stuttering and was able to distance himself from drug use in his later teen years, but after being discharged from the army, drug dependency and its repercussions returned. In addition, he grappled with his mental health and was diagnosed with bipolar disorder and ADHD. After short stints in jail and in rehab, he met friends like him who only helped to further his habits.
Financially dependent on the now-divorced Reed and struggling amidst bouts of depression and relapse, Kyle moved in with her and attempted to find a path forward. He returned to school, studying to become an electrician, and began saving up money to afford his own apartment. Over time his savings, combined with social assistance, helped procure him a place of his own. He also had a new girlfriend, and once again held out hope for the future. Kyle dreamed of one day becoming a neuroscientist and of researching the effects of drugs on the brain.
Then on a Monday evening in 2016, Reed had an overwhelming premonition that something terrible had happened. Kyle still called her frequently to check in, and she had expected a phone call that morning, but it never came. The last time she had heard from him was the previous Wednesday, when she had stopped by his apartment to give him 60 dollars from his SSI check.
On that ominous Monday evening five days later, she heard a knock at the door and opened it to find two police officers. Reed knew before they spoke what they were about to tell her. The officers reported that her son Kyle had been found deceased in his apartment. The cause of death was an accidental overdose of alcohol and prescription medication. 60 dollars was found on top of his kitchen table. He had died the previous Wednesday night, just after she had last seen him. He was 33 years old.
Let’s pause here. Reed has been narrating her story to me for the past several hours and at this point, she lets out a deep breath. She tells me that Kyle was a tortured soul who was never truly happy on Earth, and that she believes he is now at peace. He has spoken to her through a trusted medium and she is confident that he is in a better place. She also shares that she carries a tremendous amount of guilt. This stems from her belief that Kyle’s anxiety started from an early age due to his fear of stuttering – anxiety that kicked off the self-medicating drug habit that ultimately caused his death. Maybe if Kyle had received early intervention for stuttering his anxiety disorder would have been prevented. She might have been able to save him. Yet when I ask her what advice she has for parents now struggling to help their children who stutter with negative thoughts and emotions, she relays the following:
“You cannot blame yourself. As a parent you do the best you can.”
She is able to turn these gracious notes of absolution inward. Perhaps, she stipulates, his anxiety had nothing to do with stuttering after all. Stuttering certainly no longer bothered him at the time of his death. “You just don’t know,” she concludes.
Reed has given the latter years of her professional life to the pursuit of specializing in stuttering therapy and is a frequent attendee at stuttering events and conferences around the country. I myself met Reed for the first time in person at a stuttering conference – the FRIENDS annual convention in Denver, Colorado – in July of 2021.
She now works in private practice and offers the following words of wisdom to parents of children who stutter: Seek early intervention services for children who stutter under the age of five; for older children and adolescents who stutter, find a therapist who focuses on stuttering therapy and has extra training in avoidance reduction and cognitive behavioral therapy (CBT); introduce children who stutter to their peers and to people of all ages who stutter; and most importantly, talk openly about stuttering.
Reed implores allies and supporters of children who stutter to speak these words to them often: “It’s okay to stutter. You are not doing anything wrong or bad when you stutter. Stuttering is not shameful, and it is not your fault that you stutter. You are perfect and lovable just the way you are.”
I can’t help but reflect on how all of this advice stands in stark contrast to the experiences of the young Reed, walking to school on quaking legs, hiding her stuttering at all costs and returning home to a mother who might slap those same legs in an attempt to stop her stuttering. That brave and determined young girl grew up to stop the pattern of fear and shame from continuing.
I also think of Kyle, marveling at the power of a mother’s love and the connection between a mother and son that transcends time and the physical plane.
In Memory of William Kyle Reed
5-20-1983 to 8-3-2016