The Power of the Support Group

hurwitzAbout the author: Hanan Hurwitz was born and grew up in South Africa. After finishing my studies in Electrical Engineering I moved to Israel, where I now live in a town called Ra’anana. I work at Servotronix Motion Control, and currently hold the position of Product and Account Manager. I am a PWS, and have stuttered since some time in childhood. I started my journey of discovery and recovery from Stuttering at the NSA conference in 2010. Activities outside of work include reading, fiddling with my Stratocaster guitar, and running a support group in my town for people who stutter.

Abstract

Support Groups for People Who Stutter (PWS) truly embody the theme of this year’s ISAD conference “People Who Stutter Supporting Each Other”. Being in a support group shows us that we are not alone in our struggle, and that wonderful, life-long friends who share our challenges are there for us to discover them. Irrespective of the techniques we choose to manage our stuttering, whether speech therapy, fluency shaping, Acceptance, CBT, psychotherapy or a combination, the Support Group, on the local, national and international level, is both a necessary and a pleasurable part of our journey towards liberation, self-fulfillment and empowerment.

Background

Being in a Support Group for PWS saved my life. Had I not made the first step in overcoming fear and my shame and joining a support group, I might have continued living in a physical sense, but it would have continued to be a living nightmare, filled with thoughts of suicide and with visits to doctors in an attempt to cure physical ills caused by mental anguish.

In early 2010 I reached a crisis point in my life with respect to stuttering, a point at which I truly had no desire to carry on living. Until that point I had pretty much avoided looking for help specifically to manage my stuttering, as the only path I knew of was some type of speech therapy of fluency shaping, both of which had in the past reinforced in me my sense of failure and my sense of helplessness. It seems that in the depths of crisis I was able, finally, to simply do some Googling in order to find a support group. I found the National Stuttering Association, and read about the annual conference for PWS. The description matched exactly what I was looking for, so I took myself off to the conference, and began a journey of discovery and acceptance that changed my life.

Body

A support group provides a safe environment in which we can discuss stuttering. For many of us, our fear of stuttering prevents us from speaking about that issue that most occupies our conscious and subconscious thoughts. Dealing with our stuttering, managing it and eventually thriving in spite of it, necessitates speaking about it openly and honestly. In a world that still largely does not understand stuttering or the experience of the person who stutters, the safe environment of a support group is a lifeline.

Being in a supportive environment is an opportunity for us to put our feelings and emotions into voice. Expressing and examining our emotions via speaking about them is a vital tool in gaining clarity of what we are thinking and what we want. Sometimes we don’t even know what we want, only that we want to get out of the hell in which we presently find ourselves. Meeting other PWS, speaking with each other, discovering other people’s coping strategies, all combine to help us understand on a conscious, wide-awake level what we want. By seeing that other people are going through the same traumas as we are, we are liberated in that we give ourselves permission to accept that what we are feeling is accepted, it is understood. We are not alone in our suffering.

Support groups for PWS exist on a few levels. There may be local support groups in the communities, such as the chapters that are run in the context of the USA-based National Stuttering Association (NSA). The British Stammering Association, too, has an extensive network of local support groups around Britain, and I am sure the same model exists in many countries around the world.

Then there are conferences for PWS, such as the International Stuttering Association (ISA) World Congress, or the NSA national conference. These conferences are, in effect, support groups on steroids, to copy a popular cliché. For those of you who have not attended such a conference, try to imagine being with hundreds of PWS for a few days of workshops and socializing, all with people who have an immediate understanding of you on a deep, intimate level. It is life-changing, and if you have not yet experienced it you should do so soon.

The support group concept has blossomed on the Internet, too, with numerous blogs, podcasts and Facebook groups dedicated to discussing stuttering and supporting PWS. Yes, even someone’s blog on stuttering has the effect of a support group. When I read someone’s blog, I immediately feel better about myself since I realize, more and more each time, that I am not alone.  I gain validation for my emotions and for my actions that I am taking to achieve personal growth. All the blogs I have come across are written by such courageous and eloquent people, who manage to put into words emotions that I have been struggling to express. I am supported, and lifted up by these writings.

Conclusion

A concern for PWS often centers around the questions of what type of therapy is effective and which therapists can be recommended. These questions are certainly valid; each one of us needs to find the therapeutic context most suited for who we are, where we are in our journey and what our goals are. However important the discussion of which therapies are “best”, it is secondary to being in a support group where you can benefit from the knowledge, encouragement and shared experiences of other PWS.

At a certain point in my journey, and after receiving so much support from the various groups, I felt ready to give back and start supporting other PWS. I started a support group in my town, and I think it is of value to the people who attend. I know it is of value to me, as I continue to receive support from everyone in my group.

People Who Stutter Supporting Each Other: It works!

2,999 total views, 8 views today

Comments

The Power of the Support Group — 86 Comments

  1. Hanan,
    What a great paper! You have captured the spirit and nature of support groups. You’ve described the importance of the support group both in general terms for people who stutter, but more importantly, you share how much support has meant to you personally.
    I’m glad you’ve become so involved in the stuttering community. When we find the courage to share our personal experiences, we help others. And most often, we don’t ever know the full impact of that help. You’ve touched many lives and will continue to do so.
    Thanks for sharing this great paper with us.
    Pam

    • Thank you, Pam, for your kind words. Your presence, via the “Make Room For The Stuttering” blog and your podcast “Women Who Stutter”, taught me how to start sharing and taught me about support.

  2. Hanan,

    You truly expressed the meaning of what a support group is and all that it offers. Your open and honest words will reach so many who have yet to venture out to a local meeting due to fear or shame. You will help them take the first step on their stuttering journey.
    Annie B.

    • Thank you, Annie, for your friendship, support, and being such as wonderful role model.

  3. Raw in certain ways. Definitely instructional and inspiring. An honest, helpful paper, Hanan. Best wishes, Ellen-Marie

    • Thank you, Ellen-Marie. I look forward to reading the book you are working on 🙂
      Hanan

      • Thank you, Hanan. Knowing there is at least one potential reader waiting for it should help support me as I continue writing this sequel to “Jason’s Secret.” Best, Ellen-Marie

  4. Loved reading this work of your, Hanan. Thank you so much for sharing part of your journey in such a transparent way. Very helpful and inspirational indeed. Keep up the great work you are doing in the pod-casts and running your Self-Help Group. B-)

    Kindest regards Nancy

    • Thank you, Nancy. And you, please keep sharing the amusing and inspirational pics on Facebook 🙂
      Hanan

  5. Thank you for sharing your story and the importance of support groups. I have a couple of questions for you:
    1.Where do you think you would be had you not found a stutering support group?
    2.At the college I attend we have a local stuttering support group. What do you think is a good marketing strategy to encourage those who do stutter to join a support group and overcome the fear and shame of joining a support group?

    Thanks

    • Hello Hannah.

      If I had not found a support group I would certainly be miserable. I would probably be quite sick, the result of continual shame, blame, guilt, and self-loathing.

      The question of how to encourage PWS’ to join a support group is really interesting. I suggest starting with an article or interview in a student/campus newspaper. You or someone you know needs to be prepared to be open and to be interviewed for the paper. In the article emphasize the points of “it’s not your fault” and “you’re not alone”. Secondly, if there is a speech therapy clinic on campus, talk to the clinicians about the group, and about these 2 messages. Maybe they have patients who would attend the group.

      I have considered putting up flyers in my town, advertising the group, but I fear that doing so would only frighten away those PWS who are not ready to come out. What do you think of such a method?

      I hope this helps, and I’d love to know what works in the end for you, so that I can consider it for getting more people to come to my group.

      Hanan

  6. A nice read Hannan and thanks for sharing your views. I never knew you were South African. You have certainly embraced and seen the power of pisitively directed support. Great job

  7. Hanan,

    Thank you for sharing your experience. It is really inspiring to hear that you came out of your shell after living in fear for so long. I think it is truly admirable that you were able to overcome such adversity. The overall benefit of support groups is clear. I am wondering if there are any notable shortcomings of support groups in your experience? Is there anything you would like to see change? Are the large stuttering conferences socioeconomically diverse? What do you think could be done to increase diversity in the future?

    • Hello Jamie,
      Sorry for my late reply. I’ll try to answer each of your questions.
      Shortcomings: No, I cannot think of any notable shortcomings of support groups. Sure, the bigger the group the more difficult it is to enable everyone to get the attention they deserve, but that would be a goal for improvement, not a shortcoming.
      Changes to the groups: It depends on each group. For me, I find that free-format group works well, whereas other people might find that a set agenda works better.
      Economic diversity of the large conferences: I have met a diverse range of people as far as economic situation goes. I fear, however, that many people who are not well off are not able to get to the conferences. They are not cheap. And here we, as a group/society, have a challenge to rise to; to finance participation for as many disadvantaged people as possible. And to get people to accept the help being offered.
      Increasing diversity: On the national and international scale we should have more gatherings. The difficulty/challenge is arranging the gatherings, since most work is voluntary, and funding.

      You asked really interesting questions, and I hope I have managed to give at least partial answers, or opinions.

      Thank you
      Hanan

  8. Thank you for sharing your story. I am a graduate student clinician who treated a client with stuttering last semester. I found your story to be very educational because as a student clinician, I focused mostly on the behavioral components of stuttering using fluency shaping technique. Through your story, I realize the importance of addressing the psychological components of stuttering. I will definitely be discussing support groups for clients in the future. Did you find that your stuttering severity changed since being involved in a support group? Were there support groups that you found more effective than others? If so, what are the qualities that make a support group more effective than others? Thank you!

    • Hello,

      My stuttering severity did decrease over time I started being involved in a support group. This was directly due to my having an increased sense of being “ok”, of accepting the fact of my stutter. That enabled me to be open about my stuttering, and that decrease the pressure on me. The psychological aspect is crucial; fluency shaping or other techniques will not succeed on their own, over the long term. And acceptance does not mean accepting the way I stutter; but once I accept that I stutter and I am ok, then I can work to change it and not be afraid of when I will stutter again.
      An effective support group enables people to feel accepted for who they are, and not judged in any way. A support group based on practicing fluency shaping, for example, will not succeed, since people are being judged. The support group needs to consider the emotional aspects involved with the stuttering, and give people the recognition that they are struggling. Thsi is not ‘pity’, it’s empathy.

      I hope this helps. Thank you for your insightful questions.
      Hanan

  9. Thank you, Hanan
    I commend you for sharing your experience. Support groups and conferences have helped you tremendously and now you are in the position to help others. Thank you for doing so! I am sorry to hear that your past experience with speech therapy and fluency shaping were so negative. Many individuals have reported that therapy did not adequately address their fears and concerns in daily life or help them prepare for relapse. I’m studying to be a speech pathologist, and I thank you for reminding me of the value of support groups. Do you see a benefit to therapists being directly involved in support groups?

    • Hello,

      Yes, indeed, therapists should be involved in support groups in order to learn first-hand what the person who stutters goes through. Stuttering is so much more than motor control; understanding the ‘iceberg’, the emotions below the surface of stuttering, is crucial. And since people who stutter do not have inherent motor control problems, understanding the fears and concerns is perhaps of even greater importance than the mechanical control of speech. If you have not already heard about it, I suggest reading on the ‘Iceberg Analogy of Stuttering’. Here is a link to a wonderful paper by a wonderful person: http://www.mnsu.edu/comdis/isad6/papers/hicks6.html

      Has my response been helpful? If not, please, let’s discuss more.

      Hanan

  10. Hello Hanan,

    Thank you for sharing. I enjoyed reading your story very much. You made a lot of great points. Interestingly enough my family is from Israel and I have traveled in both Israel and South Africa many times. It is great that you established your own support group and I admire how far you’ve come as a PWS. I was wondering, how does the South African and Israeli culture view stuttering? How does your support group feel about therapists participating? Are you considering creating more support groups in the future? Has your stuttering changed over the years?

    • Hello Elina,
      It’s difficult for me to generalize about how the South African or Israeli cultures view stuttering. In Israel I was once told flat-out I would never get a job, but here I am, 20+ years later, working and advancing in my career, and I feel very accepted in the place where I work. I left South Africa a frightened wreck, hiding from everything, so I cannot view the society objectively. And my fear was not only from stuttering, but many aspects, not least of which was the fear of living in what was a police state. I imagine that there are many people who show understanding and many who do not. My friends from South Africa accepted me as I was.

      My support group welcomes therapists. We, people who stutter and the therapists, need to learn from each other. On the other hand, there is a Facebook group in Israel that is closed to anyone who does not stutter, even therapists. Personally, I feel that is a shame.
      I hope to be able to create more groups in the future. I’d love to see more frequent international gatherings.
      My stuttering has, in general, eased over the past 3 years, simply due to being more accepting of myself and open to speaking about stuttering with others. I started my journey of discovery and acceptance at the tender age of 47, so I have quite a lot of baggage, and incorrect beliefs about myself, to work through. But that’s positive; it simply means I have room and motivation for personal growth 🙂

      Thank you
      Hanan

  11. Hi Hanan,

    This is a truly inspiring paper. I am studying to be a Speech Pathologist, I am learning how important acceptance of stuttering is to overall quality of life. I applaud your determination for not giving up on yourself and for seeking help through support groups.

    You mention in the above comment that you accepted your stuttering at the age of 47, do you think earlier acceptance of stuttering is important?

    • Hi Dulce,

      Absolutely, yes. The earlier a PWS accepts him/herself, the less emotional baggage that person will have to overcome. Each day that we struggle to hide our stutter, or use avoidance to get around it, we dig our hole deeper.

      If I can clarify something: acceptance does not mean accept that I cannot speak. But once I accept who I am and that stuttering is simply a part of me, I can be more successful in any work I do to ease my speaking.

      Wishing you much success with your studies, and a fulfilling career.
      Hanan

  12. Hi Hanan,

    The most important words in the whole paper…’I am not alone’
    And indeed we are not, but it takes courage to reach out. It is reaching that point that is the true battle.
    I run a support group in Northern Ireland and what I have found is that support groups are like stepping stones. It is a place to come for information, ideas, and to see what other stammerers are like. It can be a bit like a trip to the zoo at the start! A curiosity as to what other PWS are like! Are we like the others? Are we different? Is my stammer as bad as the others?
    We take the ideas, the information and some head off in a new direction seeking out those techniques and therapies, others like the new friendships and stick around awhile longer. Gaining confidence and perhaps finding a pathway.
    Most will move on, the stepping stone of the group elevating them to a new place, a new challenge, knowing that it will still be around if they need a hand back up if they falter.

    Mandy Taylor

    • Hi Mandy,

      I love your analogy of the “stepping stone”. I would like to use this in my future attempts to attract PWS’ to the group. What you say can help overcome the hesitation, or outright objection, of going to a group, since it gives hope for the future. The person will not feel stuck in the group. I had never considered this, so thank you very much.

      Hanan

  13. Hi Hanan,

    Thank you so much for sharing your story. It was very inspiring to hear how you have overcome your fears of stuttering and I am certain your story will continue to be an inspiration to many. I am a first year graduate student in speech-language pathology. As you emphasized in your paper, we have discussed in class the importance of people who stutter knowing they are not alone. We have studied that historically stuttering has been around since the beginning of recorded history with evidence recorded in Egyptian hieroglyphics. There are also many famous people throughout history who have stuttered and ultimately achieved great success in their careers. I’m curious if the emphasis you put on “you’re not alone” in the support groups focuses on this historical aspect at all? If so, how important do you find it is to highlight this fact? If you do not focus on the history of stuttering is there a specific reason you do not? Again, thank you so much for sharing your story and being an inspiration for people who stutter as well as providing insight for therapists treating people who stutter.

    Laura Newman, Graduate Student
    Western Carolina University, North Carolina, USA

    • Hi Laura,

      I have not focused on the historical aspect of stuttering. There is no specific reason for this, I just had not thought to do so. Also, I am not familiar with the historical facts. However, reading your comment, I do feel that telling people about the history of stuttering will be an additional help to them. Lee Reeves gave a presentation at NSA 2010 called ‘Stuttering 101’, in which he went through the history. You reminded me of it, and reminded how very helpful that knowledge was to me.

      Just a small note: at my group, there is relatively little of me telling the people stuff, and a lot of them, us, sharing stories and trying to be supportive. I have often planned an agenda for the meeting, only to find that it takes on it’s own life. It’s good; the conversation is good for us.

      Thank you.
      Hanan

  14. Hello Hanan,

    I greatly enjoyed reading your paper and learning how finding support groups for PWS allowed you to have a greater quality of life. I think all types of support groups, help “normalize” the issue you are dealing with. I think support groups make it easier to accept yourself and the challenges you are facing if you can talk about it with other people that have similar experiences.

    Do you think young-adults who attend support groups for PWS would benefit from having an adult mentor who also stutters? Have you seen any support groups run that way?

    -Jamie
    Graduate Student

    • Hi Jamie,

      Yes, I think that having an adult mentor in a young-adults group would help, as long as that adult listens and encourages, and does not lecture :-).

      I have not seen groups run that way, but, really, my experience in support groups is limited.

      I can think of many NSA old-timers who would do the job you suggest perfectly. If you would like suggestions, let me know.

      Good luck with your studies.
      Hanan

  15. Hello Hanan:

    Your paper is a pleasant reminder of how the use of and effects of support groups can be generalized to several other populations, including people who stutter. No matter what one’s problems are, the feeling that one is not alone can be quite empowering. Do you know if there are any support groups for parents/caregivers of children who stutter? Being with other parents of children who stutter sounds like it would make a great support network. Thank you very much! -Colby G.

    • Hello Colby,

      I agree, support groups are beneficial in general. I am sure that a group of parents of children who stutter would be wonderful for such parents. They, too, need to know they are not alone. I don’t know of such groups; in Israel where I live there aren’t any. I will make this suggestion to some therapists I know. If you are in the USA, then I suggest contacting the NSA and asking if they know of such groups. Similarly, contact BSA in Britain.

      Thank you
      Hanan

  16. Hanan,
    My name is Karissa and I’m currently studying stuttering in my graduate program. Your honest discussion about your life prior to joining a support group really hit home with me. I don’t stutter myself and can’t truly imagine how difficult it would be, but being able to read personal experiences like yours gives me a glimpse of understanding of how alone people who stutter can feel. It’s great to hear how powerful and important a support group was to you and to so many others. It seems being an active member in a support group is paramount for a quality life. Since I may come across people who stutter in my future profession, the first thing I will do is introduce them to a support group! Thanks for sharing.

    Karissa
    Idaho State University Graduate Student

  17. Hi Hanan,
    Thank you for sharing your experience – what a powerful message! As a future speech-language pathologist, I enjoyed reading about how support groups have been beneficial to you and others who stutter. Support groups seem to be a critical aspect of helping people who stutter recognize that they are not alone in the feelings they may experience. Finding support through blogs, podcasts, Facebook, etc. is also a great option for PWS to stay connected. It’s so neat that you have started your own group! Thanks again for sharing.

    Lindsey
    Graduate student, Speech-Language Pathology
    Idaho State University

    • Hi Lindsey,

      There are, in fact, many Social Media options for PWS to connect to each other, and get support. I feel that I should have actually mentioned them in my paper. Just in case you and other could find this helpful, here is a very partial list:
      Facebook: Stuttering Arena, Stuttering Community, Women who stutter: Out stories
      Podcasts: Stuttering Is Cool, StutterTalk, Women Who Stutter Podcast

      All the best,
      Hanan

  18. Hi Hanan,

    It was very interesting reading about your experience with support groups and how much it changed your life. It is great to see that you took the initiative to join these groups on your own. I have a few questions. I realized that many PWS don’t have the knowledge about support groups. What do you think are some ways to inform and educate PWS about these groups?
    Also, you mentioned that speech therapy you received in the past didn’t provide much help to you because it made you feel a “sense of failure” and “helplessness”. What did you see as the main flaw(s) in the therapy you were receiving? I am a graduate student studying speech-language pathology, so I would like to know what things about therapy turned you off from it, so I would be able to do them differently. Thank you for sharing your story!

    Michelle
    Graduate student, Speech-Language Pathology

    • Hi Michelle,

      Newspaper articles, or articles in campus magazines, are a good way to inform PWS about such groups. Consistency of the message is helpful, such as a recurring ad/announcement in the section of the magazine where groups/help is publicized.

      The main flaw with speech therapy, and later with fluency shaping, for me, is that is ignored the emotional baggage that I had that was associated with stuttering: fear, shame, frustration, anger, resentment, everything included in the “iceberg analogy of stuttering”. Just looking at the fear alone, it overwhelmed me, and inhibited by ability to start to speak. The “wall” of fear needs to be identified, spoken about, and broken through. Once I know that I am not alone, and that stuttering is not my fault, I can start to work on overcoming shame and fear. Avoidance Reduction therapy of some sort, in a supportive environment, seems to work wonders. Some PWS can work on overcoming the Iceberg, and only later on the speech. Severe stutterers might need the two in parallel, simply because they need some tool to enable them to start to speak, to get a word out. But addressing the iceberg from the start is crucial, in my opinion.

      Thank you for reading.
      Hanan

  19. Hanan,
    Thank you for sharing your story with us.You make such great points about how therapeutic support groups can be for people who stutter. You also state that support groups are just as,if not more, valuable as techniques used in therapy. It’s also great that you point out that everyone needs to find techniques that works best for that individual. I was wondering, do you use techniques learned in speech therapy when conversing with other people who stutter? Do you feel like using techniques gets in the way of fully expressing yourself? Thank you in advance!
    – Jessica

    • Hi Jessica,

      I don’t use any particular technique as such. Learning to be “in the moment” of stuttering, to stop running away from it, or pushing out the words with all my might, but to kind of be mindful of what is happening while I am stuttering, has been most helpful to me. Perhaps that could be defined as a technique? So, I am not using a technique to force control of my vocal mechanisms. This is important for me: when I learned Fluency Shaping, that is exactly what bothered me: I could not reconcile concentrating on the techniques while remembering what it is I was trying to say. Being highly sensitive did not help me, sinceI was acutely aware that I sounded different. Being mindful of what is happening while I am stuttering is, on the other hand, and exercise in observation, not control. And preferably non-judgmental observation.

      Yeah, so that’s it: non-judgmental observation of what’s going on helped me the most. To be clear and honest, there are times when I stutter severely and have difficulty getting back to observing, and not simply trying to push out words. But it’s getting better with time 🙂

      Thanks
      Hanan

  20. Hi Hanan,
    Thank you for sharing such a powerful story. As a future speech-language pathologist who is currently working with kids, I was wondering if you have ever worked with just teenagers in a support group? If so, are the dynamics of the group of teenagers different from that of adults? Thank you again for sharing.

    Kallie

  21. Hi Kallie,

    I have not worked with teenagers. I am petrified of teenagers 🙂

    Seriously though, I can surmise that the dynamics of working with teens are different from those of working with adults. Teenagers thoughts are concentrated in different areas than adults. maybe teens have more rebelliousness, more need, even, to prove adults wrong. One needs to be able to connect with the teens on their level.

    Does this make sense to you?

    Thank you.
    Hanan

  22. Hi Hanan,

    Thank you for sharing your story. It is wonderful how you have transformed as a person and your story will truly help other PWS with acceptance and a sense of empowerment. I am a graduate student studying speech-language pathology and am currently taking a fluency class. We had a panel of PWS come in and discuss their experiences and it was eye-opening to see how emotions played a large part in their therapy. Many of the individuals had a negative feeling towards therapy due to their speech therapist not discussing their emotions and what they thought about stuttering. Is this similar to the experiences you had during speech therapy since you stated that it reinforced a “sense of failure” and “helplessness”?

    I also agree from your previous reply about therapists being involved in support groups. I definitely am going to look into attending a support group. You are truly an inspiration to others. Thank you again.

    Sincerely,
    Alicia

    • Hi Alicia,

      Yes, this is similar to my experiences, both from speech therapy that I had a child/teen, and from Fluency Shaping that I learned as an adult. I should note, though, As a child I was terribly introverted, and I am not sure how cooperative I would have been had the speech therapist asked me how I feel about stuttering. I guess that there are ways of getting children (and teens) to open up. It’s not simply a matter of question-and-answer, right?

      Thanks for reading, and wishing you well.
      Hanan

  23. I really enjoyed reading your paper and thought you did a superb job of succinctly highlighting all of the wonderful things about support groups. While I am a second year graduate student in communication sciences & disorders and not a person who stutters, I have been to support groups for a different reason (I lost my brother and attend The Compassionate Friends national conferences) and could not agree more with what you have to say. Support groups let you know that you are not alone in the world, and that your thoughts and feelings don’t make you crazy, there are others out there feeling the same things. I have found acceptance, love, and support from complete strangers and made life long friends.
    I do have a question for you. I have a client who stutters, a young adult, and I would like to talk to her about attending a support group but I am unsure how to bring the subject up. What would you suggest?

  24. Hi Stephanie,

    I would suggest informing your client that there are support groups for PWS, while reinforcing the dual messages of “you are not alone” and “It’s not your fault”. Follow up with the fact that we go to a support group in order to be with people who understand you, people who “get it”. Being with people who understand me is liberating. And people will “get” your client and she will be liberated, too. Tell her that the support group is not about pity, it’s about empathy. It would be best if you have specific groups to mention that would be relevant for her.

    I’d love to know if you agree with that approach, or having something better to suggest, since it will help me, too.

    I am sorry, really, for your loss, and thank you for sharing.
    Hanan

  25. Hanan,

    Thank you for sharing your story and emphasizing on the importance of support groups. I am a second year graduate student pursuing my degree in speech-language pathology and am currently enrolled in a fluency course. About one week ago, a panel of people who stutter came into our classroom to share their stories on how stuttering impacted their lives and their experiences with speech therapy. Two of the individuals on the panel spoke about the National Stuttering Association (NSA) and how amazing and beneficial that association has been for them. They spoke about the support groups that they attended and how big of an impact it was on them. After listening to their stories, it really emphasized the importance of support groups, especially the importance of addressing the emotional aspect behind stuttering. How many support groups have you attended and what have you gained from each one? What advice can you give a speech therapist that would like to attend a support group?

    Thank you for sharing your story!
    Diana

    • Hi Diana,

      I apologize for the delay in replying to you.

      Besides the support group that I run once a month in my town, I have attended 4 NSA conferences, one ISA World Congress. From the conferences I gain in terms of feeling that I am not alone, I make friends who understand a deep emotional part me, and I gain knowledge about stuttering and about different approaches to treatment and managing our stuttering.

      I warmly encourage speech therapists to attend the NSA conferences, in order to meet people who stutter. You will be more effective as a therapist by getting to know PWS, and a variety of PWS. We all have our own ways of dealing with, or not dealing with, our stuttering, and it’s important for the therapist to understand the wide range of emotion and behavior amongst people who stutter.

      Apart from the conferences, I would suggest to attend the support groups that are run by NSA chapters across the USA (or BSA in the UK). Some chapters might welcome therapists, others might not. A good starting point is simply to find an NSA chapter close to you, and make contact. Take a look at http://www.westutter.org/find-an-nsa-meeting-near-you/

      Thank you for reading, and All the best,
      Hanan

  26. Hello Hanan-
    I am in my final year as a graduate student in the communication disorders program. I am also taking a Fluency Disorders class where a panel of individuals who stutter came to our class to speak about their stories. Many of them talked about being involved in a support group and how it changed their lives, just as you stated. No matter what an individual is coping with, knowing that their are others in the same or similar situation is so reassuring. What made you join a support group? What would you say to someone who is thinking of joining but is too shy to reach out and talk to others about what they are feeling or going through?
    Thank you for sharing your story!
    -Alexa Spinelli

    • Hello Alexa,

      I apologize for the delay in replying to you.

      I joined a support group in an attempt to find relief form my stuttering. I had reached a point where the intensity of my crisis with stuttering exceeded the intensity of my shame of it, and I was able to do some research and find a support group. After many years of being aware of support groups and their benefit for many different populations, it seemed that I eventually allowed the thought that a support group would help me to penetrate my conscious mind.

      For someone thinking of joining, I say, gently, that they will meet other people who will have an immediate, intimate understanding of them. They will no longer feel alone. I tell lthe person how I was once in the same situation. I stress “gently” since a PWS has to be ready to make the step to go to a support group. I believe in gently encouraging, not being forceful, and certainly not making the PWS feel even worse about themselves.

      Thanks for reading, and all the best with your studies and career.
      Hanan

  27. Hello Hanan,
    Thank you very much for sharing your personal story. It was not only touching but also brave and inspirational to put yourself out there in order to help others overcome their fears of stuttering.
    I am a second year graduate student in speech-language pathology. I am currently enrolled in a fluency class, where you have confirmed much of what we discussed. Support groups for those who stutter is one of the most important factors in recovery.
    My question for you is that do you believe that PWS will benefit if these support groups are structured by both a Speech Pathologist and PWS. This way, support groups will not only be a place where individuals will not feel alone but they will also gain valuable strategies and therapeutic models that will help them in everyday situations.
    Thank you for sharing your story!
    Nfinkelstein, Graduate Student

    • Hi,

      I apologize for the delay in replying to you. I have been out of touch, out of contact, for a number of days.

      You ask a really thought-provoking question, and I am not sure I have a definite opinion about this.

      My first reaction was that the support group should be structured and run by a PWS, since PWS’ coming to the group will identify more with another PWS, and the level of mutual understanding and empathy will be greater.

      On further consideration, however, I realized that I know therapists who run support groups, and I have no doubt that these specific people help and encourage the PWS who attend their group.

      The main purpose of the support group is, I believe, for the PWS to be with other PWS, people who understand. Sure, gaining strategies can be a great additional benefit to the PWS who attend the group. But it’s a delicate issue: some therapeutic approaches might benefit one PWS, but not another. In the support group, we need to avoid creating any further sense of failure in the PWS, and we might inadvertently do this by explaining a therapeutic approach that is not suitable for a specific person. The person might try it, find that it did not ease the stuttering, and reinforce a sense of failure. Worse, the PWS might not return to the group.

      Do you understand what I mean here? There is a dilemma, I don’t have a firm opinion on this. It might depend on the therapist, I don’t know. It would be wonderful if anyone else reading this could give their opinion, since it’s an important question.

      All the very best,
      Hanan

  28. Hello Hanan,

    I really enjoyed reading your article. I am currently working on my master’s degree in speech-language pathology and I am very interested in working with PWS. In the stuttering class that I am taking, we have recently been discussing the value of support groups. The concept of support groups is not new to me, but I have not been exposed to support groups for PWS. I loved reading the different types of support groups and what a positive experience they were for you. I believe that a support group for PWS offers a deeper element that cannot be reached with just traditional clinic based therapy with a speech-language pathologist. The only person who can understand stand the experience of a PWS is another PWS. I have come to understand that more and more throughout my education. I think that concept applies throughout all aspects of life though. The only person who can understand fully understand how someone feels is another individual who feels the same way or shares that characteristic/experience. Thank you so much for sharing your story!

    Sincerely,

    Andrea

  29. Dear Hanan,
    I had no idea that there were so many different options for support groups for PWS. Do you prefer online support over meeting in person or are you equally comfortable sharing in both contexts? As an SLP student I am just curious about what I might recommend to possible clients who are seeking support.
    Thank you,
    Emily

    • Hello Emily,

      Sorry for the delay in replying to you.

      I prefer meeting in person. I find that I can be much more open when meeting someone, where things can be discussed. I am not against online contexts, such as the numerous Facebook groups for PWS. I think they are wonderful. For me, personally, because of my personality, I prefer actual meetings, and I don’t share as much online as I do in meetings, although this experience with ISAD seems to be changing that behavior :-).

      I would recommend both options for your clients. They should join Facebook groups for PWS, even if only to read what other people are saying. Join a support group, even if only as an observer. Even if they are passive in the group, they should join. It breaks the isolation, and that is crucial for recovery.

      Thanks for reading,
      Hanan

  30. Dear Hanan,

    When I saw your name on the conference, I expected greatness and after reading your paper…was not been disappointed. You always provide such insight, but my favorite line–which I plan to steal–is: “we are liberated in that we give ourselves permission to accept.”

    I have also loved to see so many students post on your paper. To see that you have reached them and brought new understanding is encouraging when so many graduate programs teach only one approach to working with people who stutter.

    Thank you for all the time, caring, and nurturing that you bring to this community!
    Rita

    • Hello Rita!

      So lovely to see your name; thanks so much for your comments.

      I am very touched, and happy, that students have read my paper, and that I have seemed to have given them an extra tool in their toolbox. We together, the SLPs and the PWS’, can make a better future for the PWS’ out there, and those to come.

      Hanan

  31. Dear Hanan,

    Thank you for sharing this wonderful piece. My name is Allison Cullinan and I am currently in graduate school studying speech-language pathology. As I continue to learn more about stuttering, I always seem to ask myself if there is a way that PWS can express their feelings regarding their ups and downs that they experience in life.

    My little brother was diagnosed with Tourette’s Syndrome as a child, and similar to the experiences PWS go through my brother has had many low points that have had such a negative impact on his self esteem. I always wished that a support group, similar to the one you attended and created was available for him. He went to therapy once a week with a psychologist, however, always felt like he had no one to relate to. It is so amazing to see the influence a support group has had on you personally, and knowing the impact your support group has on others.

    I am just wondering if you have any advice for me as a future speech-language pathologist working with PWS? I want to be able to give the most assistance to all of my clients, and help them in succeeding in achieving a happy life to their fullest potential. Do you think it would be beneficial to create an environment similar to a support group where PWS and their families can meet once every couple of months to discuss their highs and lows? Or even having a client who stutters come in with their family members one session per month to discuss their concerns, any positive feelings, input they have on the impact my therapy has on them personally or any concerns they may have?

    Thank you so much for presenting this piece,
    & I hope to hear from you soon 🙂
    Allison Cullinan

  32. Hi Allison,

    The primary advice I can offer you as a future SLP is to be aware of the emotions behind/under the stuttering. Study and be aware of the Iceberg Analogy of Stuttering. Read Sheehan, Van Riper, Murray, Sisskind and others who speak less about the techniques of speech control and more about the overall management of the struggle. Find the blogs and podcasts of PWS, read them, and make your patients aware of them. This does not lessen your value as an SLP, but rather it enhances it.

    I feel that your suggestion for PWS and their families to meet has great value. It will help everyone see that they are not alone, and by sharing experiences they will gain mutual support and strength. One thing, though, to be aware of, just from my experience. I was, and to a certain extent still am, terribly ashamed of my stutter. The shame overwhelmed me. The thought of my younger self being in a room with my parents and discussing stuttering fills me with dread, and prompts a withdrawal into myself. All the more so when thinking about meeting with other PWS and their families. But perhaps such an event would have brought me out of my shell. I don’t know. Just keep in mind that some people are pretty messed up inside, and might not cope. If you are aware of this possibility you will, I am sure, identify such people and help them cope and thrive.

    Thanks for reading. All the very best to you.
    Hanan

  33. Hanan,

    I would like to thank you for emphasizing the importance for people who stutter to seek out augmentative resources along with speech therapy. I am very happy that you mentioned the true reality of speech therapy for those who stutter.As a future SLP, I will strive to encourage my clients success, however big or small, rather than give them a sense of failure after therapy. Unfortunately, I am unable to directly relate to my clients because I am not a person who stutters. However, I am eager to join support groups in the future to further educate myself from the “inside out”. After reading your paper, I am certain that at the top of my agenda will be to lead my clients in the direction of support groups. Their success is dependent on their feeling of self-worth and their motivation. I appreciate you sharing your story so that we can learn from an additional perspective. In your opinion, what would be your very first recommendation for a brand new client who is concerned about his/her stuttering?

    Thank you again,
    Chelsey

    • Hi Chelsey,

      I think that my first recommendation would be to gain exposure to other PWS via social media. This way, the PWS sees that he/she is not alone, and can start, however hesitantly, to exchange information on a peer-to-peer basis. The PWS should be introduced to support groups, if they exist locally, and to the national conferences.

      For yourself, I appreciate your honesty when you say that you are unable to directly relate to your clients. However, if you, too, attend support group meetings and, especially, the national conferences, you will spend time with a wide variety of PWS, you will get to know them, and you will then be very effective, I am sure, at treating them.

      Wishing you much success,
      Hanan

  34. Hanan,

    Thank your sharing the importance of support groups and how they benefited you as a PWS. I also am a graduate student in a SLP program, and want to provide the best environment and advice for any future clients who stutter. Was there a point in your life that you considered a support group, but weren’t quite ready to make that step? Would it have been beneficial for you to be accompanied by your SLP earlier on?

    Thank you!

    • Hi,

      Yes, for many years I was not ready to make the step to the support group. I was too overcome with shame and with fear. If I had been with an SLP, then I can envision a situation in which attending a support group accompanied by my SLP would have been beneficial.

      Sorry for not answering more directly, but I was not in that situation, so I can only try and think how I would have reacted.

      For sure, if the SLP understands the need for support from a group of peers, and understand the emotional aspects behind stuttering, then the PWS will have much greater success.

      Thanks
      Hanan

  35. Hello Hanan,
    Thanks for sharing your experience with support groups. I am a first year SLP student and have had very little experience working with PWS. In learning about therapy options, we learn about group support so it’s nice to hear what a positive experience that has been for you. Thank you!

  36. Thank you for sharing your experience. It’s wonderful to hear how support groups have positively impacted your life! I am a graduate student studying speech-language pathology, and I can’t help but wonder if SLPs should make more of an attempt to connect clients that come in who stutter with others that also stutter; especially if the clinician is not a person who stutters.
    I’m curious… do you think that the support group has changed the way that you speak. I don’t necessarily mean “have you become more fluent”, but do you notice more confidence when you speak? Are you more comfortable with the fact that you stutter, even if you are in a situation where you are the only person who stutters?
    Once again, thanks for sharing your experience with stuttering. Hearing firsthand experiences such as yours are far superior to text book learning!
    Kate

    • Hello Kate,

      Yes: the support group has given me more confidence, and enabled me to learn, slowly, to accept myself. I am more confident, in general, when I speak. I no longer have the same level of fear and shame that I used to have. To be honest, I am not free of my fear and of my shame, and I certainly still have difficulty in many situations. But I look at how far I have come, and I try yo look forward, to further freedom from fear. It’s a process, and it takes time. The support group gives me the strength to persevere.

      Thanks for reading.
      Hanan

  37. I think support groups are an awesome therapy approach. I am from a very small town in northwestern PA and support groups are very hard to come by…especially stuttering support groups. It needs to be made known how helpful support groups really are. Thank you for your enlightening story.
    Jamie Heiberger
    Idaho State University Graduate Student

  38. Hi,
    I am a second year graduate student and also have the opportunity to work with children receiving speech services in a school. I work with a young student who stutters and the idea of a support group seems like such a helpful aspect for people who stutter. But, I’m afraid the child I work with would be too young at this point, would you recommend a support group for the parents of these children?
    Thanks,
    Kaylee

    • Hi Kaylee,

      Yes, I recommend a support group for the parents. Parents, too, need to know that they are not alone and that it is not their fault.

      The NSA runs Family Programs (http://www.westutter.org/who-we-help/families/). FRIENDS is an organization dedicated to supporting young people who stutter (http://www.friendswhostutter.org/). These are vital resources for parents, and their children.

      NSA conferences are superb for children. Advise with the NSA director on suitable ages.

      Thanks for reading
      Hanan

  39. Hanan,
    Thank you for sharing your story. I am not a person who stutters, but I can imagine how incredible it would be for a person who stutters to be active in a support group or attend a large conference. Are these large conferences available to children as well as adults? Since it would be hard for a child who stutters to grow up without access to these supportive groups, what do you recommend for parents of children who stutter to ensure their child is getting the emotional support they need? Do you feel counseling would be an important aspect to speech therapy?

    Thank you again!
    Bianca
    Idaho State University Graduate Student

    • Hi Bianca,

      Yes, the conferences, and especially the National Stuttering Association Annual Conference, are open to children, and their parents. Their are special activities for children.

      Parents of children who stutter should (can I say ‘must’?) go with their children to an NSA conference. It is simply life-changing. Also, the NSA runs Family Programs (http://www.westutter.org/who-we-help/families/). FRIENDS is an organization dedicated to supporting young people who stutter (http://www.friendswhostutter.org/). These are vital resources for parents, and their children.

      Counseling can be positive. However, counseling must done in coordination with the speech therapy. The effective way to treat stuttering is have some type of multi-disciplinary coordinated approach. If the counselor is ignorant about stuttering, then counseling may make the problem worse. Conversely, a speech therapist ignorant of the emotional aspects of stuttering will not have much success, and may also make the problem worse.

      Take care,
      Hanan

  40. Thank you for talking about the benefits, and needs, of having a support group. I believe in the benefits of support groups. However, I have some clients who have chosen not to go to support groups for fear of “being judged” by others who attend. These clients are parents with children who stutter – they have voiced to me that they feel that there is always comparison (between parents) regarding the perceived severity of their child’s stuttering, etc. Do you have any advice to share with parents who have this fear?

    Thank you!

    Premila
    Idaho State University Graduate Student

    • Hi Premila,

      Just as us people who stutter have to learn and accept that it’s not our fault, so our parents need to learn and accept that their children’s stuttering is not their fault. Sure, parents’ behaviour can influence and even worsen the nature of the stuttering, but the problem of stuttering is so complex, and so poorly understood, that it’s difficult to understand everything and manage the child’s stuttering perfectly.

      The best thing parents can do is understand that it’s not their fault, and that they need to put any pride or ego issues they may have behind them, in order to be exposed to as much information as possible, in order to help their child. Their focus must be on doing everything possible to help their child.

      Thank you for reading.
      Hanan

  41. Hanan,
    I recently met a young gal in her 20s who stutters and had been attending speech therapy for most of her life but up until about a year ago, she had NEVER met another person who stuttered. This made me realize how being a person who stutters surrounded by fluent speakers would have to make one feel so isolated and only compound the negative feelings of having something ‘different’ about them. If this young lady had had access to a support group, her life could have been so different. This also made me think that speech therapists can be a great resource for sharing information about local or online support systems if they would just take a few minutes to research programs. In your paper, I was impressed by the section in which you wrote “For those of you who have not attended such a conference, try to imagine being with hundreds of PWS for a few days of workshops and socializing, all with people who have an immediate understanding of you on a deep, intimate level. It is life-changing, and if you have not yet experienced it you should do so soon.” Wow! What an amazing experience it must be! I think it is so wonderful that you are bringing some of the benefits of what you’ve experienced in support settings to others in your area. Thank you!
    -AH

  42. The title of this paper caught my eye because I wanted to know the power of support groups when it comes to encouraging and inspiring PWS. After reading this paper, I’ve learned that group therapy is a must with anyone that needs companions that can empathize with their challenges. Like you said, it is a “life line” to have a support group because the power of healing as a group is more rewarding and powerful than trying to take challenges on your own.

    • Yes, a support group is a lifeline, and, as other people have said, this applies equally to all areas of disability, illness and bereavement.

      Thanks for reading.
      Hanan

  43. Hi Hanan,

    Thank you for your insightful paper. I have also benefited immensely from my involvement with self-help organizations.

    Fear and self-doubt figure prominently in the lives of many people, not just those who stutter. They can sabotage hopes and aspirations. When left to our own devices, it is possible that we may never summon up sufficient courage to face the issues that impede our progress. However, as members of an online forum, some people gain confidence and encouragement by leaning upon the knowledge, camaraderie and collective support that are present within that group. I have witnessed this on numerous occasions.

    We can all gain something (however small) from each other’s stories. Learning about the experiences of other PWS can provide an interesting insight into how they deal (or have dealt) with their respective difficulties, as well as offering reciprocal inspiration. It can alert us to possibilities of which we were previously unaware — in relation to therapies, techniques and opportunities that allow us to unearth our true potential. It can also open our eyes to possibilities that we could never have imagined, igniting belief in our own capabilities.

    As a result of these interactions, many of us now possess a far greater understanding of the issues that shape our lives. We are also better informed about how we (and others) react to the diverse challenges that confront us, and have discovered that there are exciting paths available for us to tread. But, perhaps, most importantly, we know that we need never again experience the isolation of facing those challenges alone (a point you make in your paper).

    I sincerely hope that our paths will cross one day.

    Kindest regards

    Alan

  44. Hanan,

    Thank you for being such a positive influence to so many people with your work in Israel and around the world, with your paper and responses on this conference, and to me. No need to respond to this – I know the last day is always very busy. I just wanted to extend my congratulations and wish you a happy International Stuttering Awareness Day!

    Judy Kuster

  45. Hanan,

    I appreciated hearing how support groups have benefited you as a PWS. I’m curious, how do you feel about people like myself, who have no personal connection to stuttering, visiting support groups for PWS?

    Thank you,
    Karine Maynard
    Graduate Student, Idaho State University

  46. I’m so glad you found support during such a dark time in your life. I have found much needed help from support groups during different experiences in my life and I know how valuable they can be. Conversing with others who have similar challenges is so therapeutic! Like you said, even if treatments and methods vary, you all have something in common and can all support each other. Thanks for all your great work!

  47. Hi Mr. Hurwitz,
    I am currently a graduate student at Western Carolina University studying to become an SLP. As someone who plans on working with children, I was wondering what your thoughts are on the importance of receiving the benefits of a support group at an early age. It seems that the adult population of people who stutter would have more options for finding a support group, do you have any advice/insights on ways to offer those same benefits to a child who stutters?
    I’m looking forward to your reply!
    Jessy

  48. Mr. Hurwitz,
    I really enjoyed your paper on support groups for PWS. To me, it helped to raise a question in my mind about awareness for these types of support groups and awareness about PWS in general. I know that growing up where I did, this was not something that I was made aware of. I think that what I am trying to say is that do you think there is room for improvement in making people aware of these types of support groups? And not even just for PWS, but supporters of PWS? I am glad that you were able to find a support group to help you on your journey! Thanks!

    Trae P

    ISU Graduate Student

  49. Hanan,

    Thank you so much for writing this! I am a graduate student in an SLP program and I am working with an adult client who stutters. I would love to find a support group for him, but he only speaks Spanish and none of the local support groups have a Spanish speaker. I wanted to ask you – as a PWS, would you feel comfortable attending a group that spoke another language if you had an interpreter? And would it be better to have a family member/friend as an interpreter, or someone with whom you didn’t have a connection so that you’d feel more free to talk about your feelings and experiences?

    Thanks so much! Good luck to you!

    Alexis