Still More Questions Than Answers

doriAbout the author: Doreen (Dori) Lenz Holte is Mom to 19-year-old Elias, a young man who has stuttered since he was 2 ½ years.  After six years of research and reflection on their own journey, Dori published Voice Unearthed:  Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter (available on Amazon).  She also continues her advocacy and conversation within the Voice Unearthed Facebook Group engaging over 400 parents, adults who stutter, and speech therapists in search of support and better options for our kids.  Join us!   

Last fall I had the pleasure of attending an NSA Family Fun Day at the University of Minnesota, The day included a panel of adults who stutter speaking to parents of children who stutter. When asked what success looks like, each and every one of these adults said it was not about being fluent, but about putting yourself out there and saying what it is you want to say.  They spoke frequently about the importance of self-confidence overall, not just about their speech.  One man stated that he loved going to therapy as a child, but didn’t find the speech tools and techniques helpful.  I asked him what he loved about it.  He replied, “I felt like I was accepted and listened to.  I felt safe.”

Self-confidence, acceptance, and feeling safe … that’s what we all want for our kids, both during their childhood and into their adult years.  Speaking for children, I believe that the inclusion of speech tools and techniques, although intended to support self-confidence and communication, often does the opposite.  As an expert on the subject of bullying in the workplace, the late Tim Field stated that a common strategy used to bully an employee is to “put the individual in a situation in which failure is almost certain.” [1]  Speech therapists and parents often talk about how kids will use their speech tools while in the clinic setting, but rarely beyond those walls.  Why are we setting them up for constant failure by asking them to do something that most adults find impossible to do?  Family Lives, a charitable organization in the UK, claims that when a disabled child is being bullied:

–          their condition may be reinforced or worsened, and
–          they may become reluctant to mix in social situations. [2]

From the time he was three until he was nine, our son’s stuttering behavior went from mild to moderate to severe (condition reinforced or worsened), and he became silent and withdrawn (reluctant to mix in social situations).  During this period we were engaging him in speech therapy that hinged primarily on the use of speech tools and techniques.  While I know that there is not one iota of malicious intent from either speech therapists or parents when they embrace the idea of speech tools to help children who stutter, we cannot continue to close our eyes and ears to the potential life-long consequences of setting our kids up to fail in this way.  I am not suggesting that all will fail, but too many will fail – way too many.  When will we accept the fact that the outcome of these expectations is often the opposite of self-confidence, acceptance and feeling safe?  When will we come up with less risky and more effective options for supporting children and their families who are struggling with this issue?

There’s hope.  I am encouraged by emerging strategies that first and foremost target the fear and anxiety that often builds up around the effort to communicate including Cognitive Behavioral Therapy, Rational Emotive Behavioral Therapy, Neuro-linguistics Programming, and Acceptance and Commitment Therapy.  The problem is that too many of these efforts are focused on teens and adults.  What can parents and speech therapists do with children to minimize the need for these interventions in the first place?  How can we minimize the negative messaging, the anxiety, the fear, the sadness that too often builds up in children who stutter?  How can this field work with parents to integrate interaction styles that support free-flowing speech, keeping communication fun, and creating as many opportunities as possible for anxiety-free speaking for our children?

I would have never in a million years thought of myself or our speech therapists as bullies when we continually encouraged our son to practice and use his speech tools outside the clinic setting.  And yet I understand now that I was putting him “in a situation in which failure was almost certain” each and every day, each and every hour.

It may seem harsh to label our actions as bullying, but the similarities around the negative impact are too concerning to ignore.  We must work together to develop safer, more supportive options for helping children who stutter.  We must keep them talking, keep it fun and first do no harm!

References

  1. Tim Field, Bully in Sight Success Unlimited (1996) p. 43
  2. http://www.bullying.co.uk/advice-for-parents/how-does-bullying-affect-your-child/

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Comments

Still More Questions Than Answers — 45 Comments

  1. Doreen,
    I really took to heart your advice that putting a client in a situation where he is almost certainly to fail is just plain bullying. On your other point, I put a little of the Stoic spin on it that is prevalent in REBT. I promised myself at the end of each session to ask the clients, “Did our session help you to gain more self-confidence, self-acceptance and inner serenity?” In the book “Borrowed Brilliance” the author states that there is nothing wrong with using things that other people have invented, if in the proper context you acknowledge them. So, please, keep on coming up with gems of wisdom, no matter where they come from. Likewise, I will keep on borrowing them to use with my clients. Gunars K. Neiders, Psy. D., Ph.D.

    • Hi Gunars – I’m honored that you are “borrowing” my wisdom :-)) There’s another darling little book called “Steal Like An Artist.” Fun read…

  2. Dori. Thank you for your paper and for sharing your story. I had never before thought of the classic therapy as bullying, but looking at the end result on the children, the analogy is plain to see. I like how you stress the fact that this was not the intention of the therapists, teachers and parents, but I remember well the stern, disapproving looks that I got from various therapists over the years, and I remember how it felt. It felt very much like bullying.

    So, what can be done to change the situation? I know that many researchers and SLPs are treating stuttering in a very different way from the past, and are using the strategies you mention to target fear, anxiety, and lack of, in Gunars’ words, “unconditional self-acceptance”. David Shapiro, in his ISAD paper, speaks about building bridges between the PWS and the SLPs. You will read some papers during ISAD by SLPs who are also PWS, and about how they bridge the gaps. Increased cooperation between the ISA and the IFA could possibly go a long way to bridging the gap.

    And papers like yours will contribute to the process, raising awareness of the problems of the classical treatment approaches that focus on fluency alone.

    Thank you
    Hanan

    • Thank you Hanan for taking the time to read my paper. Your words are so encouraging. I will continue to be a public voice for better options, but I can’t do it alone. How can we support families to minimize the need for CBT-type therapy as adults? I’m so glad you’ve joined us at Voice Unearthed Facebook page!

  3. Hi Dori!

    I really enjoyed reading your story and can feel your passion behind every word. I am an aspiring speech-language pathologist, currently in my first semester of graduate school. We are learning so much about creating a positive environment for our clients and not focusing on the disfluency, but rather the person behind it. I feel as if it will be my responsibility to promote a clinical setting in which my clients are given opportunities to reach their optimal potential, thus transferring speech confidence into every day life outside of the clinic.

    Would you say the hardest part for your son was that he was not prepared for the interactions he would encounter outside the clinic walls? What did you try to do as a parent to help him have confidence in himself and his speech? Do you think that speech tools can be useful in therapy if they are accompanied by activities that emulate true social interactions?

    I strongly believe that collaboration of the SLP and the parents of a child who stutters can have a positive impact on the child’s comfort level in a variety settings. Fostering cohesion between both parties not only reiterates the importance of consistency, but may alleviate the disconnect that is so often the cause of fear and anxiety in children who stutter.

    Thank you so much for sharing!

    Nikki Legg

    • Hi Nikki – thank you so much for reading my paper and for your great questions. The best way to get answers to those questions is to read “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter.” I spent six years researching and reflecting in order to write the book I wish had been available to our family when we began this journey. Your questions are at the heart of my efforts. As far as the use of speech tools — I generally feel that they should not even be introduced prior to age 10 — and maybe even beyond. The risks are too great. But if a therapist can’t resist, they should be introduced as an option that a few kids find useful but many kids think is stupid and it’s okay if this kid thinks so too. Focusing on reducing the %SS is terribly seductive because that’s what IEP and insurance companies look for (as do parents!) — and most speech therapists have extremely limited time with a client and are ill-equipped to deal with the psychological aspects that can exacerbate and overwhelm the behavior. Thanks again Nikki — best of luck to you!

  4. Hi Dori,

    I am a student in a Speech-Language Pathology program and am learning so much by reading the papers presented at this conference. Thank you for sharing!

    You mention how your son’s stuttering worsened and he became more withdrawn from social situations up until he was nine years old. What (if anything) changed in your son’s therapy after age nine? Was he able to get to a place where he felt more confident and more comfortable in his ability to interact in social situations?

    Thank you,
    Heather

    • Thank you Heather for reading my paper and for your question. When Eli was nine, we switched gears and focused on getting him talking and re-engaged in the world around him under the guidance of Dr. Jerry Halvorson, UW River Falls. If you’re interested, you can read much more about this journey in my book “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter.” Jerry helped us to explore ways to engage Eli in activities that helped him to take the focus off his speech and gain confidence in himself. Until Eli was 12, this was a covert operation — Eli thought Jerry was just some crazy cowboy with a ranch and a bunch of horses. (And all of that is true.) Over the period of 10 years, he evolved to being thought of as a leader and a role model for others – not just kids who stutter. He is now majoring in astro-physics and of course, is head of his Physics Club. So short answer — less direct speech therapy and more star gazing!

  5. Hi Doreen,

    I really enjoyed reading your post and learned a lot from it! I am currently a first year graduate student in speech-language pathology so it was very helpful to read this from your point of view. My favorite part was when one of the adults you spoke to said his favorite part of speech therapy was that he felt safe and accepted, although the techniques he learned were not useful to him at all. This was a really good takeaway for me as a future clinician. How long did it take before you ended up taking Eli out of speech therapy? Did you ever communicate with the SLP with how you felt the direction of the therapy was going and how did that conversation go? I was just hoping to get more insight about this for my future sessions.

    Thank you!
    Shozab

    • Thank you Shozab for taking the time to read my paper. We took Eli out of traditional speech therapy when he was nine and began working with a speech therapist completely focused on getting him talking again and working closely with us, as his parents, to help facilitate that process. I wasn’t really able to communicate too much about my feelings because, at the time, my only concern was that Eli did not use his speech tools outside the clinic setting – and that, again, at the time, seemed to be either his problem or my problem. It wasn’t until I immersed myself in research that I came to realize that the expectation itself was the problem. I wrote the book, “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter” because that’s the book I wished I had been able to read when we started this journey. Thanks again and best wishes to you and your future in this field.

  6. Hi Dori!

    Your’s and your son’s story were very eye-opening for me. I am a first year graduate student in communication sciences & disorders, and I never considered the negative impact that teaching speech tools could have on a child-and definitely did not see them as bullying. However, I agree with you. In the fluency class I am currently in, we are being taught to provide the child with as many opportunities for successful communication as possible in order for them to feel that fluency is possible.

    I have a few questions for you: did your family and your son ever partake in parent intervention outside of the clinic? We are learning that through parent intervention in a more naturalistic environment, there’d can be great success generalizing fluency to other communication experiences. Also, what do you suggest be done for young children who stutter or are showing the starting signs of stuttering if speech pathologists do not teach them speech tools and tips?

    I appreciate you sharing your story with everyone, and I am inspired to read your book.

    Thank you!
    Lauren

    • Hi Lauren – thank you for your comments and questions. I’m going to challenge you a bit – I hope you don’t mind! What are you referring to when you say “successful communication?” It is so easy for a child to get the message that communication is only successful when they are fluent, especially if the use of speech tools and techniques are being introduced and pushed. This runs a tremendous risk of the child choosing silence over having their voice heard. In our case, that choice was a far greater handicap for our son that the stutter itself. As far as parent intervention- depends on the focus. If parent intervention is all about generating fluency, then I see that as extremely problematic and very possibly harmful. If parent intervention is focused on keeping them talking and keeping it fun — that I believe it can be very helpful. This is probably a shift from the perspective you’re getting in class. I wrote my book in order to broaden the perspective for therapists and I hope you have a chance to read it. That will give you a better idea of what I think speech therapy should look like for children. Thanks again for your participation and best of luck!
      Dori

      • Hi Dori- thank you for your response. Also, thank you for asking me what I mean by successful communication. I believe that in order for a communication attempt to be successful does not necessarily mean the child has to be fluent. I feel that if the child feels confident about their communicative attempt- even if that includes stuttering- then I would consider it a successful communication attempt. The definition of successful communication, for me, would vary from child to child, based on their emotional behavioral response to their stuttering.

  7. Hi Dori,

    I am a Speech Language Pathology graduate student, and I found your article very interesting. I absolutely agree with you that the tools SLPs teach clients need to extend outside the walls of the clinic so the child can practice in situations that are not contrived. Do you feel if your son’s SLP used more naturalistic settings early is his therapy, he would have been more successful? Additionally, what (if any) advice do you have for me as a future SLP when I work with PWS?

    Thank you for sharing!
    Shannon Cassidy

    • Hi Shannon – thanks for your questions. You maybe have misunderstood my musings as I believe attempting to extend speech tools both within and outside the clinic setting comes with tremendous risks. Most children can use these tools with great focus in the clinic setting but find them impossible to use in their naturalistic setting, which sets them up for experiencing continual failure. All of their thoughts and focus needs to be on using these tools, not on living their lives and being heard. It’s all-consuming and too often overwhelming. Expecting a child to focus that intently on their speech runs the risk of increasing anxiety around talking, withdrawal, and silence. If you are interested in learning more, please take the time to read Voice Unearthed. The best advice is to learn all you can and fully understand the controversies and uncertainty that exists in this field. Adults who stutter have a tremendous insights for parents, as do the parents! Take the time to listen. Thanks again for your question.

  8. Hi Dori – great paper. Thanks for sharing this perspective. Like someone else said, I would never have thought that encouraging the use of speech tools could be a form of bullying. But as you explain, if the outcome is always failure, then that makes sense. Most of us who stutter can’t transfer what is done in the therapy room to outside it. We feel like failures. That happened to me as an adult and it is so frustrating to not be able to replicate fluent speech from the therapy room out into the world.
    Thanks again for sharing your views. -Pam

    • Thanks for sharing your experience Pam. I always say that adults (especially adults like you!) have so much to offer parents with children who stutter. And so many adults convey the same frustration with therapy – both childhood therapy and therapy as adults. I hope things are changing for everyone! I know the work you’re doing is contributing to the field’s understanding of the big picture and change in the right direction.

  9. Dori,
    Thank you so much for sharing your perspective. I am a graduate student studying to be an SLP and I am really loving how treatment for a PWS is changing from teaching compensatory strategies to a more client centered approach where we will help the client accept the stutter, reducing the stress that is placed on the client. Do you believe that in some cases speech tool/techniques are the right approach to treat stuttering or do you feel that teaching these techniques need to be removed from treatment? – Courtney

    • Thank you for your important question! To be honest – I don’t think it’s worth the risk to introduce speech tools and techniques to any child under the age of 10. Not that every child will respond negatively, but we just don’t know until it’s too late. If you read Pam’s reply above, you’ll see even adults find these strategies frustrating to transfer outside of the clinic setting. I feel that if speech tools are introduced to tweens and teens (and adults) it should be in a way that gives them a clear message that many people do not find these useful so give it a shot and if you do not find them useful, let it go. A good example of how this can be done is represented in Dr. Phil Schnieder’s “Going With the Flow” video available at https://vimeo.com/16767636. Thanks for your interest and best of luck to you!

  10. Dori,
    I was intrigued in your perspective in this paper. I had never thought of things in that way. I am a graduate student for speech and language therapy and am currently taking a fluency class in which we are learning to do more of what you suggest in this paper, less techniques and strategies and more “client centered” therapy. Instead of introducing and practicing new strategies to “get out” of a stutter, we are being taught to really get to know the client and figure out what he or she wants from therapy. That may be helping them become more confident with themselves and their stuttering in order to feel comfortable in speaking situations. We are also being taught that it is important for them to generalize these “skills” or confidence in themselves outside of the therapy. To me, it doesn’t make sense to help a individual who stutters if they are only going to be effected by the therapy in the therapy setting. All of these ideas seem like they would have been helpful if utilized in therapy with your son.

    Brittani

    • Hi Brittani — thank you for your comments. I think it’s important to remember that children are not adults and approaches to therapy should look much different. Often a child (and a parent) just want the stuttering to stop — that’s what they want from therapy. It’s important that a speech therapist help them to understand the bigger picture and the risks involved. Parents are key to building confidence and 1/2 hour of therapy with a child a week seriously isn’t going to cut it. Parents need support and direction in how to keep their kids talking and engaged in the world around them. Best of luck to you!

  11. I greatly enjoyed reading your paper. I am a speech pathology graduate student, and we have been taught that some theories on stuttering relate to anxiety experienced from a parent’s negative reaction to the stutter. As such a supportive mother, how do you feel about such stuttering theories?
    Thank you,
    Madison

    • I think there are many different root causes of stuttering and there are many situations that can exacerbate the behavior. Pushing speech tools and techniques on a child in order to lessen the behavior is often perceived by the child as a “negative reaction” whether it’s coming from a parent or a speech therapist. Can a parent’s reaction create anxiety? You bet it can! As can the negative reactions of teachers, peers, speech therapists, relatives, neighbors…. I think the focus of therapy should be on minimizing those reactions as much as possible and helping the child build a strong foundation of coping skills. Building up their confidence in all aspects of their world, keeping them talking and engaged — and educating parents, teachers, peers, speech therapists, relatives, neighbors…that’s what will make a difference. Thank you for your question and best of luck to you!

  12. Hi Dori,
    Thanks for sharing your personal experiences! I am more interested in what your thoughts are about teaching the speech tools. You mentioned not teaching these tools to children under 10. Which speech tools do you recommend introducing after the age of 10, if any? ~Chelsea

    • Hi Chelsea — sorry for my delay in responding – we are in the middle of a big move! I think there are risks even after the age of 10, but the risk might be lessened due to increased ability to manage messages (it’s okay to stutter, but practice these tools so you don’t…) I believe the primary focus of therapy should be to keep the kids talking, not to eliminate their stutter, which can add layers of anxiety and worsen the condition. If there is an overwhelming desire to try speech tools, I’d say whichever tools the child says he finds helpful in his world. Hopefully you will have the type of relationship with your young client where he/she will be comfortable saying “these are stupid, I don’t want to used them” and you will say “hey kid, many people feel that way and I understand why — but sometimes some find them helpful. So let’s move on.” The best “tool” in therapy is to be a genuine and supportive listener. Make them feel safe and heard.
      Thanks for your question Chelsea – and best wishes to you!

  13. Dori,

    I find your thoughts to be very valuable and truthful. Thankfully, there are people such as you who have recognized flaws and have the boldness to share them; despite the fact that there are many others out there with differing opinions.

    I am currently under the instruction and clinical supervision of Dr. David Shapiro (if you have the chance, check out his work; I think you would enjoy his writing). In class, we have learned about various types of speech therapies, many of which only stress the behavioral aspects that come with stuttering and entirely neglect the presence of the emotional/cognitive aspects of stuttering. While this type of therapy might serve as effective to someone without substantial emotional/cognitive aspects present in their disfluency, it seems the majority of people who stutter do have some of these affective and cognitive factors present. Often these therapies result in poor carry over of what is being taught in treatment to the real world. This leaves the PWS feeling like a failure. I, too, ask your underlying question, “why then, are we using these approaches with the knowledge that they are not only often ineffective, but sometimes emotionally detrimental to the individual who stutters?” Other approaches do focus on both affective and cognitive factors, as well as behavioral factors affecting people who stutter. These studies tend to have better carryover into real-life situations.

    I share Dr. Shapiro’s viewpoint that often the reason these strictly behavioral approaches are used is because they are easier! The mindset seems to be that other therapies addressing affective and cognitive aspects of stuttering take too much time and counseling on the part of the SLP! Thoughts and feelings can’t be measured, so why bother?

    But, where does this mindset put us ethically? Are SLPs really serving their clients to the best of their ability when they choose certain therapies because they are “easier,” or because it is more difficult to track the progress of an individual who stutters by their thoughts and feelings? As an aspiring SLP, I would argue that we must go the extra mile, even when it seems as if it is a more difficult road.

    As a parent, do you feel like your son would have benefitted from these “more difficult” therapy approaches addressing the affective, behavioral, and cognitive factors of stuttering if an SLP would have taken the time to implement them? Do you think it is possible to implement these therapy approaches in young children who have not necessarily developed many negative emotional feelings regarding their stuttering? As a parent, how do you think we can prevent these negative emotions from occurring before they develop in a child within speech therapy?

    Thank you for sharing,
    Amanda

    • Hi Amanda – sorry for my delay in responding – we are in the middle of a big move! I am very familiar with Dr. Shapiro’s work (I even have one of his stories in my book and read his text book cover to cover during my research for Voice Unearthed) I have tremendous respect for his opinions and his accessible approach to this oftentimes controversial topic. Please tell him hello! I think that the best approach to therapy with young children is to work with the parents to identify and recreate (as often as possible) times when the child tends to talk most (stutter or no stutter). You’re right about the mindset when it comes to therapies that address thoughts and feelings — it is messy and more difficult. And most speech therapists, even with exposure to this approach during their grad programs, are no where near qualified to address these factors to the degree they need to be addressed. Once the child starts to develop social anxiety and quits talking as much, well, I guess I go back to my recommendation for younger children — work with parents to identify and recreate times when the child talks most. Be an amazing listener. It’s ideal when you can implement these strategies before the child develops negative emotional feelings around communication. I don’t think we can totally prevent the negative emotions from developing once they start, but I do believe there is much we can do to minimize this development and the impact it can have on the long-term outcomes for these kids. And ethically? I think it’s highly unethical to impose a therapeutic strategy that runs such a high risk of poor outcomes just because it’s easier and more conducive to concrete measures. Your questions and comments are wonderful — you are bright and you clearly have a fabulous role model in Dr. Shapiro!! Thank you!! Best wishes to you…Dori

  14. Hi Lori,

    I have been exposed to very limited formal speech therapy in my life. The last occasion I sat in a clinician’s office was about the time that the wheel was invented. 🙂 Yes, it was so long ago that l have very little recollection of what occurred. 🙂

    All I remember is that I was required to read (for a short duration) from a book – using some kind of techniques. My parents were never involved and I was never encouraged to use those tools in the outside world. After a few months, the therapist (yes, that’s what we call them in the UK) told me that she was unable to help me and terminated my appointments. It was NOT a particularly memorable experience. 🙁

    Consequently, I do not feel qualified to comment (meaningfully) upon the issues that you raise in your paper. However, I just wanted to let you know that I greatly admire your sterling efforts to improve the lives of children who stutter.

    Kindest regards

    Alan

    • Thank you Alan for taking the time to read my paper! I haven’t been as involved this year as I’d like because we’re smack dab in the middle of a big move (typing with paint-coated fingers). And thank you for you continued support, friendship, and sharing so much of yourself with others. It means more than you’ll ever know!

  15. Hi Dori,

    Thank you so much for sharing your insight into your experiences with your son. As a future speech pathologist, I feel that it is very important for us as clinicians to take into account the family’s emotional experience with stuttering. There is no cookie cutter method that will help all PWS especially with children since they are still developing. I agree that it is essential that SLPs build positive attitudes and not just implement techniques as you stated. Thank you for sharing all your knowledge.

    -Yamid

    • Thank you Yamid for taking the time to read my paper. I think techniques should only be introduced at an older age, if at all. It’s difficult for a 7-year old to manage the messages of “have a positive attitude and “it’s okay to stutter” while suggesting they use techniques to stop the speech tension. They see us (parents and speech therapists) praise them for using their techniques, we are clearly more pleased when they don’t stutter. If the child finds it difficult to use techinques (as most do), they will too often chose silence over speaking – they don’t want to disappoint! Best of luck to you!

  16. Doreen,
    Thank you so much for sharing your thoughts. As a first year graduate student in speech pathology, we have not yet covered therapy techniques for PWS. However, I believe it is so important to keep in mind how the child may be reacting to the therapy strategies. My eyes were opened while reading your paper and it is slightly scary to think that speech pathologist’s actions can be related to bulling. Your insights will surely be in the back of my mind when my fluency class begins discussing treatment! Again, thank you for sharing!

    Tayler

    • Thank you Tayler for taking the time to read my paper. We need to ensure that the therapy, whatever the approach, is contributing to increased communication (stutter or no stutter) rather than increased silence and withdrawal. This means helping parents learn what to watch for and listening to parents’ feedback. Parents must be a key part of therapy — thanks for listening! Best of luck to you…

  17. Hi Dori,
    Thank you so much for sharing. Every point you made is so important. I am not a parent but I am in my first semester of graduate school for Speech Language Pathology. Your paper really opened my eyes, I have never thought of setting the child up for failure and reinforcing the behaviors as negative being considered bullying. I see now how that is definitely bullying. In my fluency class we are learning intervention techniques for school age children. You said your son was three when he began to stutter and worsened at nine but even at age three and nine years old he still had a story to tell just like you and I. We want to speak WITH the child not for or at him. Its important to focus on the fluent aspects of his communication and not the disfluent. As with any humans we are motivated by positive reinforcement, children acknowledge differences in themselves from a young age. His stutter is a part of who he is and no one can change that. No parent wants their child to struggle with anything and it can become frustrating to know your child is going through something so difficult and feeling helpless. My question for you is how did you cope as a parent and not let yourself get discouraged? What advice do you have that I can share with other parents with children who may be having the same struggle not only with stuttering but any communication limitations?

    Thank you again for sharing and I will use your paper for future reference to help educate others. People often do not understand stuttering and are reluctant and withdrawn to communicate with people who stutter. I look forward to hearing from you.

    Thanks,
    Ansley

    • Thank you Ansley for reading my paper and responding! I believe what “causes” stuttering and what “makes it worse” are often two different things — and I do think that parents and kids who stutter can change things to make sure their tension isn’t exacerbated by added layers of anxiety. How did I cope? I wrote – I wrote a book titled Voice Unearthed. And I did get discouraged, angry, sad, heartbroken, and sometimes still do. But today Eli isn’t afraid to speak up, gets himself into many leadership roles, has lots of friends, and a wicked sense of humor. And he still stutters. You just never know what challenges you’re going to face when you have children and you can’t imagine the depth of your feelings, fears, guilt — many parents have connected with me who have kids with other challenges – they are able to relate to my message and understand my frustration. But fear and anger rarely produce positive change and I want to contribute to change – to safer and more productive options for kids. Sounds to me like you’re on the road to doing the same thing and then some. Thank you for that and best of luck!

      Dori

  18. Hi Dori! I thoroughly enjoyed reading your paper and hearing your insight as a parent of a child who stutters. As a future SLP I think it is so important that we encourage the growth of self-confidence in our patients. In any child it is crucial for them to grow with confidence in themselves and who they are, but when a child is different than his peers it becomes even more crucial. Being unique is a gift but it is often hard to understand that growing up. I think that as a whole people are very unsure of stuttering and what exactly it is which leads to judgment of those who do stutter, whether it is intentional or not. That judgement can come in just a slight change in facial expression or from someone making a joke out of another’s disfluent speech. Besides targeting the fear and anxiety that comes from having disfluent speech, how can we get out there and let people know that stuttering is nothing to pass judgement on? Overall there is a misconception that something is wrong with a person when he/she stutters and I am always wondering how those of us in the speech community can really change this? If there was less judgement and confusion about stuttering then I think there would be such a decrease in the amount of anxiety of a PWS and lead to more self-confidence. I believe more positive information needs to be put out there and the more advocacy then the more acceptance.
    Thanks, Miranda.

    • Thanks for reading my paper Miranda. You bring up some extremely important points There may not be anything “wrong” with a person who stutters, but they do speak differently based on societal expectations. So yes, changing societal expectations with education and advocacy is important, as is raising kids who have good coping skills, a good sense of self, compassion, and confidence. Best wishes to you!

  19. Doreen,
    Thank you for sharing your thoughts and your story about your son – I hope that he is currently doing well and is now exhibiting self-confidence, and feeling accepted and safe when communicating in different environments with a variety of conversational partners. As a current graduate student studying speech-language pathology, I both agree and disagree with some of your views regarding SLPs as “bullies”. I believe that some individuals who stutter possess the ability to achieve great success both in and out of therapy after practicing “speech tools and techniques”. I believe that, in order for success to occur, a clinician working with this population must wear multiple hats, as she must be a counselor, as well as a therapist, while providing speech/language services. In other words, the clinician must not only address a client’s fluency, but must also address the client’s feelings and attitudes towards his/her stuttering, to ensure that he/she feels confident and comfortable with using these strategies, so that positive outcomes may ensue. Having this said, I will agree that this approach is not ideal for all individuals who stutter – as some individuals’ stuttering may plateau or worsen with this therapeutic approach. An individual’s feelings towards stuttering, family support, severity and type of stuttering, and a slew of other extraneous variables may affect whether or not the individual will be successful with this approach to intervention. What I am saying is that these variables may account for the clinician “setting them up for constant failure”. What do you suggest that a clinician do with a client in order to minimize the negative feelings experienced by those who stutter? How did your son handle these concerns?
    -Victoria

    • Hi Victoria — thanks for taking the time to read my paper. You don’t differentiate between treating adults and treating children in your response. I always say that I don’t speak for adults – if they find a strategy useful to their daily lives, then it’s useful. Some do, some don’t, but I think the fallout can be less dramatic because adults have the developmental maturity to deal with it (although, believe me, I have heard from many adults who have a sense of shame and guilt around not being able to use their tools). Therapists need to work with the parents to recognize times when the child talks most (stutter or not), recreate those circumstances as much as possible, pave the way for these kids to follow their passions and gain confidence. Parents come in wanting to get rid of the behavior. That’s understandable and I was definitely one of those parents. Speech therapists need to educate parents on the risks inherent in some approaches to therapy – especially those approaches that focus on eliminating the stuttering behavior. Many therapists are directing parents to my book as a way of explaining the potential risks. Best of luck to you!

  20. Hi Dori,
    Thank you so much for sharing your story and perspective. I am currently studying speech-language pathology as a graduate student in California and am in a fluency class this semester. I have enjoyed learning about a more client centered approach to stuttering therapy, especially after completing a fluency enhancing strategies assignment in which we were to practice utilizing these strategies in our every day life. I felt that many of these compensatory strategies were awkward and more unnatural than what would be helpful for a client who stutters. I like the perspective of helping client learn to accept their stutter and ultimately reduce their stress in real life situations outside of therapy. Do you believe that the use of these types of techniques are the right approach to treat stuttering in certain situations, or do you feel they should be removed from treatment altogether.
    Thanks so much!
    Hillary

    • Hi Hilary – thanks for reading my paper. Your observations about the reality of using speech strategies are powerful. Now ask a child to do this…eek! I don’t believe that these types of techniques are worth the risk when it comes to children under the age of 10. When they are introduced to older children, you can tell them — “you may or may not find these useful, I tried them and found it awkward and unnatural, as do many, but some do find them helpful, especially in certain situations”. Minimize the shame and guilt that can grow from failure. Most importantly, keep them talking and engaged in the world around them! Best of luck to you!

  21. Hi Dori,

    Thank you for sharing your story! I am currently a speech-language pathology graduate student and would agree that often times clinicians set their clients up for failure! I recently read an article about therapy with adolescents and it was all about changing the way your client thinks about stuttering using relaxation, analogies and mental imagery. I am a big believer in talking about the stutter and changing the way a person thinks/feels about stuttering, rather than being completely focused on fluency. I think this type of therapy should start before the adolescent age. I’m curious if your son has had therapy that’s focused around his way of thinking about his stutter?

    -Melissa

    • Hi Melissa – thank you for reading my paper. I think there is a lot of potential in the type of therapy that uses relaxation, meditation, and therapies who’s foundations lie in CBT. Our son’s therapy, until he was nine, focused primarily on speech tools. After that, we worked with another therapist who had us in therapy to get Eli talking and engaged again. You can read about our journey in Voice Unearthed — It’s not easy to get at a kid’s way of thinking — especially as they hit the teen years. It’s a double-edged sword for parents. Drawing attention to the fact that you’re noticing the behavior can put pressure on them to not stutter – or, more easily,just not talk. And yet you don’t want it to be the elephant in the room. Our last therapist encouraged us to let Eli rant and rave about anything — letting him know it’s safe to do with us without us getting all stressed…parents just want their kids to be happy and kids just want their parents to be happy…there are no easy answers. Thanks again – best of luck to you!

  22. Ms. Holte,

    I’m a graduate student in speech-language pathology, and I had yet to hear perspectives from a parent until I read your paper. I know I used to think as “setting up kids for failure” could be a way of desensitizing them, but now I understand the potential negative repercussions. My understanding is parent’s want to see their kids anxiety-free and happy, perhaps more so than fluent. I hope to structure therapy that fosters self-acceptance and self-confidence in all aspects of life first, and then we can also address fluency as the client desires. Please correct me if I misunderstood. Again, thank you for sharing your perspective as a parent.

    Kristin

    • Hi Kristen – thank you for reading my paper. Parents often think what they want more than anything is a fluent child — until that child becomes quiet and disengaged. So when you say “address fluency as the client desires,” I think parents (and speech therapists) deserve to be educated about the risks of certain strategies before really understanding what avenue to take. Many speech therapists are recommending Voice Unearthed as a way to help parents come to a different mindset about what they want for their child. I always say, I wrote the book I wish I could have read when we first started on this journey 18 years ago. Best wishes to you!!