 About the Authors:
Arin Sheeler, M.A., CCC-SLP, is the proud parent of a teenage son who stutters. She lives with her husband and three children in Columbus, Ohio. Arin is a Speech-Language Pathologist and Clinical Preceptor at The Ohio State University Speech-Language-Hearing Clinic with experience working with adults with acquired neurogenic communication disorders and children and adults who stutter. She is a proud recipient of the Ally of Stuttering® Seal and a longtime board member of FRIENDS: The National Association of Young People Who Stutter. Her family has been involved with FRIENDS for several years and has a deep passion for education and advocacy in the stuttering community. Arin was honored to share her family’s journey with stuttering in Spero’s video titled “Nurturing and Empowering Your Child Who Stutters: A Parent’s Perspective.” She enjoys spending time with her family and watching her children in their various activities, reading, being outdoors, and volunteering at her church.
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Shade is what happens when light falls on a surface. Change the light and the shade changes, though the object itself has not changed at all.
This matters for the question we are asking, “What’s your shade of stuttering?” When we ask a family what shade of stuttering they live in, we are not really asking about the child’s speech. We are asking about everything that surrounds the child: what the family knows, what they fear, who they have found, and how the world responds when their child opens their mouth to speak. Those things determine the shade, and thankfully, they can change, so the question we would pose is, “What is your light source?”
The Parent’s Shade Shifts with the Season
From a parent’s perspective, we believe it is important to consider how multi-faceted and multi-dimensional stuttering often is, and that the journey to acceptance and well-being is not linear. Shades change and take on different colors and forms depending on different seasons of life.
In this way, the shade of stuttering we experience as parents is not static but rather shaped by what we know and understand to be true about stuttering, what we fear, our family values, how our child feels about their stutter, and how the people around us respond to our child’s stutter.
Several forces at play, then, but only one of them lives inside the child. The others belong to us and to the people around us, which means the shade a family lives in is being influenced, constantly, by many light sources.
That is why the shade moves and never stays static. What may initially be fear of the unknown and worry for your child can change to pride and immense joy in watching your child overcome obstacles and show bravery in social settings. This is not a matter of the stuttering “getting better,” though it may. It is a matter of the light changing.
That change can come through a robust and holistic approach to stuttering therapy that includes stutter-affirming practices and client- and parent-driven goals in the therapy room, as well as through connections to supportive communities where people who stutter are valued for what they have to say instead of how they say it, and where families learn that they are not alone in their journey.
Ultimately the shade created by the family that includes stuttering as simply one part of the child’s identity versus something to fix, hide, or control, is vital to shifting perspectives toward acceptance as well as physical, mental, emotional, and social well-being.
The Darker Shades
There is a reason we describe some of this in terms of darkness. The darker shades of stuttering may include unknowing, fear, avoidance, shame, loneliness, and disconnection. These shades are organic in nature, part of the whole multi-dimensional and multi-faceted stuttering experience, and of one’s ongoing journey toward acceptance and well-being.
It is worth considering what those six have in common. Unknowing prevents the parent and the child from understanding what is happening, leaving a space where fear and uncertainty take root. Fear isolates the parent inside their own worry and even guilt. Avoidance keeps the child from experiencing positive interactions and speaking situations. Shame isolates the child from themselves and others. Loneliness and disconnection speak for themselves. Every one of them is a form of separation happening in the absence of light.
This is why interconnectedness is crucial and the life energy that gives possibility and hope to the child who stutters, the parents, the community of people who stutter, SLPs, and society. Interconnectedness illuminates the darker shades, and it works because it addresses the thing they actually are. A family that finds other families may not stop worrying, but the worry stops being private and insurmountable. A child who meets other children who stutter may not stop stuttering, but stuttering stops being the thing that makes them feel like the only one in the room.
What “Good Practice” Looks Like
From a clinician’s perspective, we have the opportunity to change the shades of stuttering by focusing our intervention with both the client and the family on understanding stuttering and why it happens, teaching adaptive coping strategies to navigate challenging speaking situations and foster resilience, and changing the narrative that ‘fluency is good’ and ‘stuttering is bad’ toward communication confidence and freedom as driving factors to meaningful therapy.
As we begin to see the different shades of stuttering take shape, this sequence may ensue:
Knowledge has the power to change how we interpret stuttering. Interpretation often changes how we feel about stuttering. Our feelings then influence our behaviors and how we respond to stuttering. Responses then impact the child’s experience and the parent’s experience with stuttering.
Two things are worth noticing about that sequence.
The first is that it is a loop rather than a straight line. The child’s experience guides what knowledge is needed in the moment, which shapes the next interpretation, which shapes the next response. Families are not moved along this chain once. They travel it again and again, in every new season, whether it’s a new school, a new friendship, or a first job interview. Each pass leaves the shade a little different.
The second is the importance of explaining stuttering to families – what it is, why it happens, what it is not, and that no one is at fault. This is a key part of the clinical work because everything downstream is shaped by it, including the family’s ability to educate others, shaping interpretation and responses by teachers, family members, other significant adults, and peers.
None of this can be completed by one person working alone. The parent cannot supply the knowledge unaided; the clinician cannot supply the community in isolation; the community cannot do the daily work of dinner table conversations or talking openly about stuttering experiences. Interconnectedness expands the range of possibilities for the child and the family.
What’s Yours?
Our shade is one that keeps changing as the light sources grow and illuminate more and more. Good light sources bring about understanding, realistic expectations, positive responses, helpful actions, unhindered communication, empowering self-advocacy, and community.
Nurturing and Empowering Your Child Who Stutters: A Parent’s Perspective follows one family through exactly this movement. When Scott and Arin’s son started stuttering, they did what so many parents do: they searched for answers, tried to fix it, and worried about his future. What they found wasn’t a cure. It was connection, community, and a home where his voice belongs.
What changed the light for your family?
Hello readers! I am honored to be a co-author on this paper with my colleagues and friends, Ana and Mandy. I look forward to reading and responding to your comments and questions throughout the next few weeks.
Thank you for reading! We look forward to responding to your comments. – Ana Paula
Hi all,
Wow! I just love that you focused on the importance of interconnectedness. It can indeed be dark when one tries to travel the path of stuttering alone.
Describing shade as what light is when it falls on a surface is also so helpful. The lighting can appear to make the shade change, but the object remains the same. That is a brilliant observation for people in the stuttering community to wrap their heads around. What is the light source? Is it a safe space? Is it warm and inviting or dark and closed off?
The stuttering community is lucky to have SLPs who really get the complexity of this journey.
Thanks for all you do!
Pam
Pam, here’s what I love about interconnectedness…if I “get the complexity of this journey” as an SLP, it’s only because of my connectedness to people like YOU in this amazing stuttering community (and Mandy, Arin, and countless others) who have generously shared their stories to help us truly understand. Thank you for all that you do, for your willingness to mentor graduate students through your story, and for your friendship. You are the best! – Ana Paula
Hello,
I appreciate learning more about parents’ perspectives on stuttering and how clinicians can support not only the client, but also their parents. Understanding the parents’ experiences and concerns can truly help clinicians provide better family-centered care.
Hi Maddie, thank you for your comment. As both a parent of a teen who stutters and an SLP, I too feel the weight and value of making sure that parents are both considered and included in the therapy alongside their child. Providing education about their child’s stuttering and ideas for advocacy, as well as checking in to see how parents are growing in their own acceptance along the way is truly necessary and meaningful. -Arin
Hi Maddie, yes, family-centered care is so important! Thanks for reading and commenting. – Ana Paula
Arin, Mandy, and Ana Paula — I really enjoyed this piece, especially the way you framed the environment around a person as part of the “shade” of stuttering rather than focusing only on the stuttering itself. I also appreciated how much space you gave to connection, community, and joy alongside the harder parts of the experience.
As you shared, shades change and take on new colors and forms throughout different seasons of life. As SLPs or families supporting children who stutter, how can we help young people move from participating in communities that adults have created for them toward finding or building communities that genuinely feel like their own as they move into adolescence and adulthood?
Hi Zeb, thank you for reading and chiming in. I love your question, as it truly is so meaningful to consider. I have seen such confidence grow in my teenage son as he has met other kids who stutter through the Friends community. Seeing him fully engaged and living his best life with his buddies at the annual conferences really fills his cup to be able to return back home with a renewed confidence and empowerment in his communication with family, friends, and teachers. Knowing that he is not alone in this journey means a lot to him. He doesn’t have to rely on us as parents to always be his source of encouragement and advocates when he has friends who are in it with him and truly understand the lived experience of stuttering. As SLP’s, we must prioritize connecting our clients and their families to communities like Friends, NSA, summer camps, online programing like SPACE (and many other great organizations) in order for them to feel fully supported.
Hi Zeb, thank you for reading! What I’ve seen in the families I’ve worked with that have joined either NSA or Friends conferences/events is that the relationships that form last beyond the conference, so I find it beautiful that these spaces created for them facilitate friendships and connections that last. – Ana Paula
Hello Ana Paula, Mandy, and Arin
Thank you for your very interesting paper. Stuttering and the experience of stuttering, both for the child who stutters and the parents, is complex and dynamic. It changes. I really like your analogy of light and shade. All along the journey the lights changes and the shades change. If I have understood correctly, accurate information about stuttering, proper parental guidance, and the continual presence of community are the anchors along this journey. Is my understanding of your message correct?
After a recent event for families that I helped with, one of the parents wrote to us that “Why do we say there is no cure? I saw the cure today!”. She referred to interconnectedness, to the knowledge, the joy, and the unconditional acceptance that they found. I was amazed how this parent, after the first event she and her family attended, saw the power of those factors of light, as compared with the message her family had been hearing for years about the necessity of stutter-free speech.
Wishing for you all to continue doing the wonderful work that you do.
Hanan
Hello Hanan, thank you for sharing that parent’s takeaway…how beautiful that she found such healing through that experience as a parent, and yes to interconnectedness, knowledge that empowers, joy, and unconditional acceptance! I appreciate your summary of such important anchors in this journey, because yes – a holistic understanding of stuttering, caregiver guidance that encourages connection and free and joyful communication, and engagement in supportive communities are crucial. – Ana Paula
Hello Hanan, what a beautiful quote from this mother! I personally remember the feeling I had after my family attended a 1-day FRIENDS conference many years ago and thinking “We finally found our people!” Also, the anchors you refer to are INDEED crucial in this journey. I’m so glad that you were able to have that “take away” from our paper, as that was the message we were hoping to convey. Thank you for reading and sharing this message. -Arin
Hi Arin, Mandy, and Ana; I am currently completing my masters program and learned a lot about how important your approach is with families. Your paper emphasizes that a child’s experience with stuttering is shaped not only by their own feelings but also by their family’s knowledge, attitudes, and responses to stuttering. From a clinical perspective, how can SLPs help parents who may initially view stuttering as something that needs to be fixed shift toward a more accepting approach, particularly when parents are fearful about their child’s future or concerned about how others will perceive them? Are there specific parent education approaches you have found especially effective in facilitating this shift?
That’s a great question, @emilopez! First I’ll say that the knee-jerk reaction of viewing stuttering “as something that needs to be fixed” is such a normal human response to something we don’t understand. As parents, we also don’t want to see our children struggle or face adversity, so parents are on a journey of understanding and coming to terms with stuttering as much as their children are.
For very young children, since stuttering could potentially resolve, I try to approach my caregiver education and guidance so it’s a win-win, where parents feel equipped to handle it whether or not stuttering resolves. Spero offers a helpful caregiver guide with 5 focus areas related to fostering communication, confidence, compassion, connection, and resilience, regardless of stuttering frequency and/or persistence. There’s also an accompanying educational video on Spero’s YouTube channel, and I feel this is a good starting place to begin productive discussions around stuttering support. I tend to lean toward the Palin Parent Child Interaction (Palin PCI) intervention approach because it helps caregivers identify personal and family strengths and to build on those to foster a healthy communicative environment in the home. I hope this helps! – Ana Paula
Hi Arin, Mandy, and Ana Paula. I really enjoyed reading your article about the shades of stuttering. As a SLP graduate student, I found it extremely interesting to read about the “best practices” in stuttering therapy. It made me reflect on how important a thorough case history is to determine the “shade” of stuttering surrounding the client and their family. I’m interested to hear what your favorite questions to ask to determine more about feelings and past experiences surrounding stuttering?