Speak the change you wish to see… – Dori Holte

Dori HolteAbout the Author:

Doreen (Dori) Lenz Holte is a writer and mom to a 25-year old son who stutters. Her first book, Voice Unearthed: Hope, Help, and a Wake-up Call for the Parents of Children Who Stutter was published in 2011 and is becoming even more relevant as the focus of therapy for children continues to shift away from fixing. Dori is working on her next book project – unearthing parent and adult voices around the impact of childhood speech therapy for those who still stutter, due to be published by year-end. She is also the founder and administrator of the Facebook group – Voice Unearthed – the largest parent support Facebook group for stuttering in the world. Please join us! Dori loves time with her family, games and cards, reading, puzzles, and relaxing with a good TV show or movie. She is enthusiastically easing her way into the more mature stages of life.

“Speak the change you wish to see…”

That’s pretty much all I’ve been doing over the past fifteen years.  I was dissatisfied and heart-broken over the impact of six years of childhood speech therapy on our son (now 25) who stutters. All that effort accomplished was increased silence and withdrawal. This led me to write my book..

I’m at it again – only this time I’m giving others the opportunity to speak the change they wish to see. I’m interviewing parents of children who still stutter and adults who still stutter to better understand the impact of childhood speech therapy on their quality of life. What did they feel was helpful? What did they feel was harmful? What type of change would they like to see?  

Over 50 individuals have shared their experiences, giving of their time and hearts, for my next book project. Some experiences are difficult to hear and damage is still being done. Others give me hope – and admiration for professionals and leaders in this field who are leading the charge for change.

In the meantime, there seems to be a chasm as large as the Grand Canyon when it comes to what some professionals are proposing and what today’s parent of a three-year-old who has begun to stutter is most likely to experience. I’m hoping that sharing this array of stories helps move us more quickly towards eliminating that chasm and providing safer, more effective approaches to treating children who stutter. Here’s a sampling:

———-Samples———-

Mom of a five-year old: 

Our daughter started speaking fine and then the stutter started. It was really bad, very extreme. We started speech therapy at two and one-half and continued up until a couple of months ago. Two plus years of doing speech therapy every week and by this time I was so tired of it. We mostly did Lidcombe – went through five SLPs. The last one finally acknowledged that Lidcombe wasn’t working. I could only say “smooth talking” so many times. It was getting hard on my mental health as well. Under the advice of a new therapist, we tried another method – trying to get her to talk like a robot. Fifteen minutes a day our daughter was supposed to talk robot. It wasn’t good for either one of us. 

It was a battle and she refused to do it. 

You want the best for them and the professionals mean well. All the information is so conflicting and there’s no one to turn to. The family doctor says the only hope is speech therapy. Been there – didn’t help.

Then I found out that an SLP doesn’t necessarily have to have knowledge about stuttering. Our daughter’s stuttering goes up and down. I don’t know if it was the speech therapy or if this is the way it is. As far as I knew at the beginning, Lidcombe was the only thing out there. The first SLP we used didn’t have any experience with stuttering and was using Lidcombe text-book wise. I was doing Lidcombe all the time, every day – taking 15 minutes for special time and catching her throughout the day – “oh, that’s smooth talking.” 

Since I just totally stopped everything to do with speech and language therapy, it seems to have gotten better. My husband and I were just talking about it – it seems like there’s less stress. You’re the first person I’ve talked to who has given me a different perspective and told me about other options. I say to myself, “accept the way she is, this is the way she’s going to be.” 

25-year old adult who stutters:

I have an early memory around 2nd grade about something being off with my speech but I don’t remember if I was stuttering or not talking because of my stuttering. I’d gone to a couple of different therapists who were about fluency-shaping and fixing it. I didn’t like group therapy because I didn’t like hearing someone else stutter. Do I sound like that? I didn’t want to identify as someone who had a stutter. I didn’t want to relate to others who stuttered.

My next memory is late middle school. I got pulled out of school to see a speech therapist. It was definitely a fluency-shaping therapy. Weird exercises, take a deep breath, vocal stuff, one point where she massaged my throat – put on gloves, got lotion, had me talk. I kind of looked forward to it because it was relaxing and the lotion smelled good. But I look back and think, what were they doing? Who would think that would fix my stutter?

I quit seeing her, but saw two more therapists at that same office. More fluency shaping but not the weird exercises. They had me taking a deep breath and exhaling and counting as high as I could. I could count pretty high by the end but I’m not sure how much that helped my stutter. After that I would just talk. She would have me read and tell her about my day all while she was counting my stutters. It was good when I only had a couple of stutters but it did not stick.  Speech therapy worked temporarily, but it didn’t change anything internally. I only felt good when I didn’t stutter.  

In college I heard about avoidance reduction therapy for stuttering. It was a group therapy experience and it took me a while to buy into it. I didn’t want to be in a room with other people who stuttered,hear them and be judged by them. As I peeled away the tricks and started to show my stutter, I became more comfortable. Early on a guy in the group walked up to me, made eye contact, and stood there and got it out and it seemed like he didn’t care. I remember thinking, “that would be cool if I could not care about my stutter.” 

I wish I would have been introduced to ART (avoidance reduction therapy) earlier because it helped me to not feel negative about my speech. The reason I wanted to cure my stutter was to not feel so negative but if I don’t feel negative about it then I don’t have to want to cure it. The feelings I had were worse than the stutter – way worse. I had all of these tricks to try to not stutter, but the tricks made it so much more noticeable and prominent and now if I just let myself stutter it’s quicker, it’s not as tense, I don’t feel as bad about it and I’ve learned the people don’t care if you stutter. No one really cares. If I had come to that realization in my tweens, it would have been a lot better. I would not have had as much anxiety about presentations, about meeting new people in groups and parties and things like that. It would be nice if  kids who stutter could experience that earlier on.


———-End of Samples———-

 

These interviews have provided a wealth of insights creating urgency around the need for change – the need for a therapy option for children that doesn’t focus on fixing. Also needed is expanded opportunities for parent education and empowerment. Many of the parents I’ve interviewed conveyed assumptions made in the process of seeking out a therapist including:

  • Fluency is the primary goal of therapy.
  • Any speech therapist can treat stuttering.
  • All speech therapists have education, training, and experience treating stuttering.
  • The treatment provided by the therapist available to you is the only treatment/best treatment.
  • The therapy would do no harm.

The change many parents want to see is more information and transparency up front – in order to dispel these assumptions.  Changes I would like to see include: 

  • Educating parents about the potential of negative outcomes of a therapy focused on fixing including increased silence and avoidance behaviors. 
  • Providing speech therapists and students of speech therapy with expanded educational opportunities and training around recognizing and addressing the emotional and psychological impact for both the parents and children.  
  • Helping parents to understand, up front, that there are a variety of therapies with varying goals. Also giving parents unbiased information on what those therapies look like and how goals can influence outcomes. 
  • Increasing parent’s capacity to address the emotional and psychological aspects of stuttering, (bullying, self-confidence, etc.), to become their child’s best advocate, and to infuse joy, fun, and acceptance into their world. 

Shifting from a focus of fluency to one of quality of life is not an easy shift for a parent, a child, or even an adult to make, but it is an important one. Here are several powerful quotes from adults I interviewed:

“I am no longer pursuing a dream of fluency of speech. Instead it’s a dream of fluency of life. And guess what? Dreams do come true!”

“In my late 30’s, I realized that my definition of a good day was one when I do not stutter. I shifted to defining a good day as one where I do stutter, especially in front of a stranger. Ultimately I became a trained public speaking coach.”  

I want children and their families to be empowered with support that enhances “fluency of life” and defines “a good day” as one where our kids communicate joyfully, regardless of whether or not they stutter.  The change I want to see is support that results in keeping these kids talking and engaged in the world around them.  

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Comments

Speak the change you wish to see… – Dori Holte — 34 Comments

  1. Thank you for taking the time to read my paper. My goal is to help parents and speech therapists, especially new therapists, understand the first-hand experiences and impact of the various therapies. I look forward to your feedback! Dori

  2. I find this work so important! SLP’s do not go into the field with any intention of doing possible harm, and many of the techniques we are taught to help PWS achieve fluency seem helpful and beneficial at first glance. Your interviews illustrate how praising fluency and basing one’s success in therapy on how well one uses physical strategies can actually create negative thoughts which paradoxically increase struggle and avoidance. It can be terrifying for parents and PWS as well to shift the focus from fixing to supporting and this work will help many understand the basis of the shift. Thank you Dori

    • Thank you for that feedback Heather. I’m hearing so many stories of “increased struggle and avoidance” stemming from therapy focused on fixing. I’m grateful you and your staff are on the forefront of the shift that needs to happen!!

    • I am currently in a master’s program to become an SLP and taking a class on Stuttering. This article was helpful to hear real-life scenarios based off the therapy approaches we are learning in our class. Our class is emphasizing the fact that fluency shaping can promote negative feelings and the push is to move away from fluency shaping therapy and toward stuttering modification. This article’s interviews helped to provide evidence that fluency shaping therapy is not perceived to be effective and has the potential to negatively impact the PWS and family’s life. As a future SLP, this article has encouraged me to make sure that I am providing therapy that is beneficial to each patient and based off the most recent evidence

  3. Dori,
    Thank you for touching all of these topics. As a speech therapist I find very helpful to learn from other´s journeys. Fluency is overrated and we need a change, we need to consider the whole experience of the person who stutters and to find a way to enjoy communication accepting moments of stuttering.

    Regards from Peru,
    Cynthia

    • Thank you for taking the time to read my paper Cynthia. I understand the temptation to focus therapy on speech tools and strategies for fixing – but yes, we need to get to the point where therapists are positioned to address the whole experience. No small task! I’m grateful you’re listening.

  4. Thanks for sharing this Dori. As an adult who sometimes stammers I find Lidcombe terrifying!!! Speech therapy only told me that I was a total failure as the ‘fixing’ didn’t work. I returned as an adult in 2013 to find nothing had changed!! SLT needs to evolve. It’s stuck in the past.

    • I’m with you on Lidcombe! Things are changing, but not quickly enough!! I’m hoping that an acceptance and avoidance reduction approach overwhelms this field – from preschoolers to adults! First do no harm!

      Thank you for reading my paper!

  5. Wow this is powerful. The part I love is “the realization that no one cares about our stuttering”.

    It’s hard to believe sometimes but so true —- we are our worst critics!

    What advice do you have for people who do care about their stutter even if they know only a few people might not be ok with it or judge them but the majority will accept them?

    • Hi Kunai – thank you for taking the time to read my paper. My advice is to find a therapist trained in acceptance and avoidance reduction therapy. If you don’t have access to that, start to explore the topic on the Internet. The shift may not be an easy one to make, but I from what I’m hearing, the positive impact on quality of life makes it well-worth the effort!

      • A follow-up to my reply – I think it’s important to get into a mindset of “we can only influence, we cannot control.” You are being a great influencer!

  6. Hi Dori. You hit the nail in how confusing and difficult can be to choose the right therapy and how we set the wrong expectations. As an adult looking for a therapist many years ago, I called a therapist that had been recommended to me. She told me that she used the “fluency shaping” shaping approach and if that would be OK with me. Not knowing that there were different approaches, I said yes. The therapy worked fine for a while but then I realized that it wouldn’t be a long term solution. It wasn’t until I found a support group that I learned about “stuttering modification”, “acceptance” and so many other approaches to deal not only with the physical aspects of stuttering but with the feelings and psychological aspects of stuttering. It was an eye opener. Thank you for the work you do to educate parents and therapist!

    • Thank you for taking the time to read my paper. I’m so glad you’ve found a good support group! Your experience is still too often the norm. “Not knowing there were different approaches” is a huge limitation, especially for parents, but adults too. Even once you are educated about the different approaches, you may not have access to a professional who is trained and experienced in that approach. Education is just the start – huge infrastructure and system changes need to happen (especially in the U.S.) in order for people who stutter and children who stutter to access safe, effective intervention.

  7. Hi Dori. I am an undergrad student taking a Fluency Disorders class. Thank you for giving us insight of what the parents go through as well. In my class we understand that the client/PWS goes through emotional and psychological issues as a result from stuttering. In the article it was stated that the parents’ mental health is also affected. Can you elaborate on how parents’ mental health is affected?

    • Thank you for reading my paper. When a child begins to stutter, parents often become very anxious and tend to catastrophize their child’s future. “He’ll never get a job.” “She’ll never get married.” He’ll be teased and bullied.” “She won’t have any friends.” They also tend to wonder if they did something to cause it. They blame themselves. Layers of anxiety pile up, not unlike the layers that can pile up for the child who stutters. This anxiety can easily affect every aspect of that parent’s life – how they interact with their children, their partner, their jobs, their friends, their family. We need to do far more to minimize the build-up of that anxiety – for both the parents and the child.

  8. Hi Dori,
    Thank you for addressing this issue in the field, it was very eye-opening. As an undergrad communication disorders and sciences student, this really hit home for me. I’m just beginning to realize the emotional toll stuttering can take on someone. From the majority of the stories I’ve heard from PWS it seems as if fluency was always their goal in therapy. But they could never truly achieve it making them feel defeated and down on themselves. I’m glad there’s beginning to be a shift in the way stuttering therapy is approached and I hope to one day soon be part of that change. Do you know of any specific trainings that address the psychological aspect for both the parents and children?

  9. Thank you for reading my paper. The most obvious resource for training is the support organizations – The Stuttering Foundation of America, FRIENDS, the NSA. In my opinion, trainings that address the psychological aspects can surface under many different labels. Cognitive behavioral therapy, Rational Emotive Behavioral Therapy, Parent-Child Interaction Therapy, Avoidance Reduction Therapy, Acceptance and Commitment Therapy, Demands and Capacities therapy, etc… Although these therapies have distinctive difference in their components and application, they have a similar goal of addressing the affective and cognitive aspects for parents and children. There are also books around these topics and of course, the Internet!

  10. Hi Dori,

    I appreciate this paper so much! It really highlights how the world of speech pathology has changed over time. Therapist work to change lives and they do what they are taught at the time. However, sometimes what they are taught is not a lesson with longevity. We can see this today with ASD. We spent so long focused on teaching eye contact to recently learn that is not an appropriate goal.

    I remember one of my family members telling me his school teacher taught him to pop himself with a rubber band to reduce stuttered speech. I saw the marks on his skin from where he had been popping himself. I cannot say whether or not his teacher meant well but she was very wrong in her suggestion. I am interested to see where speech pathology ends up 20 years from now. I am happy to see a compilation of stories that speak on what worked and what did not work because this is how we learn as a community.

    -Anissia

    • Hi Anissia – thank you for taking the time to read my paper. I’m hoping that, in 20 years, the focus on acceptance, avoidance reduction, and confidence-building will be amplified far beyond where it is now and also adapted/expanded to serve younger children and their families. I am so grateful to those who have shared their stories – we do have so much to learn.

  11. Dori, thank you for the work that you do. I’m very much looking forward to reading your next book and being challenged by the insights shared. As a profession, we have much to learn from personal accounts about the impact and longer-term implications of the therapy we offer. Co-authoring stammering therapy knowledge in this way will hopefully enrich and inform future practice in meaningful and important ways.

    • Hello Sam – so nice to hear from you! Thank you for that feedback. I know you’ve been on the frontline of change for many years and I’m grateful to have been invited to be part of that – so thank you too!!

  12. Dori,
    Thank you so much for this paper. I am an SLP graduate student and will implement what you wrote about into my practice. Our class talks a lot about letting PWS know that it is okay to stutter. I think you did an amazing job reminding people that the counseling aspect of therapy is one of the most important parts. Thank you so much for sharing!

    • And thank you for taking the time to read my paper. I’m always encouraged when SLP grad students value the importance of the counseling aspects versus the fixing aspects. I hear of so many students who are still only being taught to fix it or new SLPs who find it challenging to go out into the real world and implement an approach that does not hinge on fixing. You give me hope!!

  13. Hi Dori,

    Love how you ended your paper…defining a good day as kids communicating joyfully, with or without stuttering – YES!!! To keep kids talking and engaged in the world around them is of utmost importance!

    Ana Paula

  14. Dori,

    Thanks for writing and submitting this paper! I definitely feel like I learned a lot about a parent’s perspective when it comes to fluency therapy as a future SLP!

  15. Dori,

    This was such an eye-opening paper to read.. I am about to start my Master’s program in Speech-Language Pathology and although it’s difficult to hear that our profession can be harmful, it’s definitely important to understand. I’ve heard from many PWS that speech therapy can either make you or break you.

    Do you think that steering away from the textbook and focusing on emotional empowerment is most important when it comes to PWS?

    Suzanne Perez

    • Hi Suzanne – thank you for reading my paper. I guess it depends on what’s in the textbook? If textbooks are focused on speech tools and techniques and “fixing,” then yes. To be honest, the whole idea of textbooks seems a bit archaic to me with all of the information we have at our fingertips via the Internet. I truly hope that professors are going beyond one textbook when putting together their curriculum. I would venture to guess that the papers presented here are far more valuable in expanding your knowledge and it’s free! The value of emotional empowerment is gaining momentum, probably more quickly than textbooks can be written and distributed, so please don’t limit yourself to the textbook if your gut tells you there’s something else to explore. Best of luck to you!

  16. Wow, thank you for sharing, Dori. I am a second year graduate student studying speech-language pathology and I think that this perspective is so important to share. I am somewhat intimidated to work with people who stutter, partially out of the fear that I may inadvertently cause them to suffer by not providing them with the best possible treatment, focused on acceptance, resiliency, and confidence in their communication (as a new clinician, this is an insecurity that I have about most populations of clients). However, I am also excited to be going to school at a time when we are discussing the harm that focusing on fluency can cause, and the positive impact that evidence-based therapy focusing on CBT, ACT, or ART can have on people who stutter and their communication experiences. I am looking forward to reading your book!

    • Thank you for reading my paper! I’m glad to year you’re discussing the harm that focusing on fluency can cause and exploring therapies like CBT, ACT, and ART as they relate to treating stuttering. If you’re really interested in pursuing intervention around these therapies – don’t hesitate to do your own research too. I know professors who are doing a wonderful job of getting outside of the box and away from fluency focus – but the classroom setting has its limitations no matter how great the professor is. These approaches are still the exception rather than the rule for the a 3-year old who is stuttering and their parents. Get ahead of the game!! Best of luck!

  17. Hi Dori,

    I really enjoyed reading the real-life stories of people who stutter or those who have a loved one who stutters. It really put into perspective the experiences people have with therapy and the different approaches SLP’s take. I also really appreciate the “fluency of life”, it really allows people to learn to truly accept themself. As a psychology student, I find the mental health of those who stutter to be very important to consider during therapy. It is crucial to make sure those who stutter practice with a “fluency of life” mindset.

    What is one way you would suggest to people who stutter to feel more comfortable engaging in everyday conversation? What are some ways you would suggest to promote a healthier self-talk or how to better engage in “fluency of life”?

    I look forward to hearing from you!

    -MacKenzie

  18. Good evening, Dori.
    I wanted to say that I am eager for your new book to come out so that I can purchase it and read. I belive it can be an useful guide for upcomming and present SLP. From reading the samples in this paper I have a better understanding of how therapy should be given because of how damaging it can be to the clients and their families. In our class our professor states that clinicians should Do No Harm and it seems that although there is a coalition to achieve this, there is still so much work ahead of us.
    I wanted to ask you a question that you can answeer based on your experiences. That question is, how can and what is the best way a therapist create an environment that is safe for the PWS and their families?

  19. Hi MacKenzie – Parents are still being told that a younger children can be fixed if it is dealt with early (early intervention is always best? depends on what that looks like!) At the same time, parents are often told to come back in six months if they still perceive a problem. This level of contradiction is not uncommon and often leaves parents feeling damned either way. Let’s just start with “fluency of life” rather than fluency of speech. The focus, from day one, should be quality of life. The negative self-talk, shame, anxiety, fear, and disengagement stemming from childhood therapy focused on fixing often lasts a lifetime – especially for those who persist. It’s so great to hear from students who are thinking differently. Best of luck to you!

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