Pushing the envelope

From: Lee Reeves
Date: 10/1/01
Time: 8:16:30 PM

Comments

Ed, Very good article. I think you are right on regarding victimization and negative perceptions of self. Winning these two battles may not resolve our disfluent speech but it sure resolves the fear of speaking.... and living life to its fullest. Nice job.

Re: Pushing the envelope

From: Eric Hayes Patkowski (aka "Ed")
Date: 10/2/01

Ed, Very good article. I think you are right on regarding victimization and negative perceptions of self. Winning these two battles may not resolve our disfluent speech but it sure resolves the fear of speaking.... and living life to its fullest. Nice job.

Thanks for the input. I've not been in therapy for ages now, so I do not know if this has changed or not, but I felt, at the time, that too much pressure was put on the stutterer to become perfect and whole (the assumption being that fluency made you perfect and whole), and that can be quite an albatross around the neck of kids who on top of all the other angst and issues, have this imperfect perception of themselves reenforced by well-meaning professionals and parents.

Pushing the Envelope: Desensitization Experiences

Re: Pushing the Envelope

From: Eric Hayes Patkowski (aka "Ed")
Date: 10/5/01

Do I see changing the views of others around them a goal for older school age kids? Within reason. I mean, school is tough enough for any kid, let alone one who has marked differences that makes them stand out, whether they want to or not.

Hindsight makes it easy for me to say that kids shouldn't let their speech or the reactions of others intimidate them. I realise that is impossible for many. But I can say, from my own personal experience, when I was in high school, I sat with a group of my friends and had a mini-education about stuttering, the causes, the various therapies, what they should and should not do. They were genuinely curious, they were appreciative, and they were receptive.

I still stuttered, but my circle of

To Robb, Eric, and Bonnie -- Permission to publish

From: Mike Hughes
Date: 10/2/01

Speak Easy Inc. is Canada's national charitable organization for people who stutter. Since 1984, we have been providing information and support to adult stutterers, parents of stuttering children, professionals in the field, and the general public. "Speaking Out" is our monthly magazine in which we publish a wide range of articles/information about stuttering.

Robb, Eric, and Bonnie: Your ISAD Online Conference paper is interesting. It is worthy of reaching even more people. We would like your permission for us to publish it in a future issue of "Speaking Out." Judy Kuster, the chair of this Online Conference thinks that this is a good idea and has no objection. Will you please grant us permission?

You can reply in this Question/Comments form, or e-mail us at: info@speakeasycanada.com. Thank you.

Re: To Robb, Eric, and Bonnie -- Permission to publish

From:
Date: 10/8/01

Hi Mike, Just got on to the stuttering web site. YES, you do have permission to publish.

Bonnie

Re: To Robb, Eric, and Bonnie -- Permission to publish

From: Robb
Date: 10/2/01

You have my permission. Good luck!

Re: To Robb, Eric, and Bonnie -- Permission to publish

From: Eric Hayes Patkowski
Date: 10/3/01
Time: 3:21:54 PM

No objections to being reprinted. Thanks

From: Sheree Reese
Date: 10/3/01
Time: 9:09:46 AM

Thanks for sharing your stories...they mean so much to my clients (and/or their parents) who sometimes feel so hopeless about their (or their child's) future, no matter what I (a fluent speaker) tell them...I always see a 'surge' in enthusiasm for therapy following a conference like this.

Re: Thanks

From: Bonnie L. Weiss
Date: 10/20/01
Time: 7:12:31 PM

Hi Sheree, It's always good to hear that SLPs get a lot out of these on- line conferences. I get a lot out of them too! Hope that what people have written helps you in working with your clients and also with their parents.

Bonnie

Pushing the Envelope

From: T. Moliere
Date: 10/3/01
Time: 11:47:41 AM

I salute those of you who have pushed the envelope and basically desensitized yourselves. Often we bring ourselves the most amount of anxiety for fear of those situations that we have no yet come to experience. You now either have a reason to be fearful of public speaking because you've been there or you don't because you haven't. My hat goes off to those with the courage to try, because "Nothing beats a failure but a try."

Pushing the Envelope

From: Lisa Kindred/Graduate Student
Date: 10/4/01
Time: 3:05:50 PM

Thank you for sharing your stories. Ed, you stated that your goal now has been to change not only your view of stuttering, but also the view of others around you. Do you see this as a goal for older school age children?

Dreams do come true

From: Mary Ellen
Date: 10/4/01
Time: 3:42:52 PM

Do you feel that the recent awareness/education surrounding the issue of stuttering has contributed to your motivation for sucess? Is it easier knowing that what you do as a speaker helps to educate the public?

Re: Dreams do come true

From: Bonnie Weiss
Date: 10/10/01
Time: 9:16:23 PM

Hi Mary Ellen, Yes, I certainly think that the recent/awareness and education surrounding stutter have helped a lot towards motivating me to "speak out" about stuttering, and about who I am. And...I feel so good whenever people ask me questions re. stuttering and/or share things they have read or heard about re. stuttering with me. For much of my life, I didn't really want to talk about stuttering though I was very severe, and there was no "hiding" from it. I think that what has helped me the most is accepting myself as a person who stutters, and sharing/educating people about stuttering. I really do think that the more I learn about stuttering, and the more I share, the more I grow!!

Re: Dreams do come true

From: Eric "Ed" Hayes Patkowski
Date: 10/16/01
Time: 9:49:39 AM

"Do you feel that the recent awareness/education surrounding the issue of stuttering has contributed to your motivation for success?"

Sorry for the delay in responding to this question, I've been wondering how I'd answer it for a while.

For my own part, I've not kept up with recent therapies or breakthroughs, and it seems like what is being talked about and passed around is taboo to some and gospel to others. I realise that my "success" didn't happen in a vacuum, that I must have pulled something from all the various therapies I've had, so I can not attribute what worked for me as being from any one source.

I'd like to think that the motivation came from where it really matters -- from within me. That's obviously where it has to originate. A stutterer isn't going to "get better" just because others want it to be so. The time was right for me, and whatever I did worked because I needed it to work.

"Is it easier knowing that what you do as a speaker helps to educate the public?"

I think it was Bonnie who said she's doing work to help educate people about stuttering, and I think that is a powerful motivation for those of us who have found techniques that worked, for us.

I don't know if we should be "beacons of hope" for specific techniques, more than we can be "beacons of hope" for those who stutter and feel totally and hopelessly controlled by it.

I'd have been much more accepting of my stuttering much more earlier had I known that I could be well-adjusted and happy EVEN THOUGH I stuttered. This was my personal breakthrough. And if I can do that for others, if I knew that I could reach one kid who hates waking up and going to school and being confronted by "fluents" because she stutters, then I'd choose continued dysfluency with a healthy and positive self-acceptance over fluency.

On a different but similar bent, educating the public is what activists do, regardless of the subject matter. That's why we do what we do. If I can serve a dual purpose of educating people about stuttering and educating them on whatever issue I'm talking about, great. But I've never really approached it as educating people about stuttering. I've never really thought about it that way.

Eric (Ed, not Ed)

Inspiring!!

From: Bernie Weiner
Date: 10/4/01
Time: 8:31:08 PM

Thanks Robb, Eric, and especially my buddy Bonnie, for sharing your stories. Reading your articles just makes me want to keep pushing the bar higher for myself. I still struggle, sometimes, but I at least I can think of the stories of my fellow PWS. I think we all have that little bit of "extra courage" that makes us take chances we never thought we would do.

Re: Inspiring!!

From: Bonnie Weiss
Date: 10/10/01
Time: 9:19:03 PM

Bernie, Thanks so much for you kind words. I think about all the ways in which we have grown as people who stutter, and am thankful to have you as my friend. Keep pushing your envelope, Bernie!!!

Stuttering and Family history according to gender

From: apjnath@aol.com - (graduate student)
Date: 10/6/01
Time: 3:53:00 PM

Your story about the challenges you've faced is interesting. However, I'd like to know more about your family history with regard to males who are dysfluent if there are any. As you know, females who are dysfluent are somewhat unusual and donot follow established norms. Also, what is the gender breakdown of the Grand Pioneer Club.

Re: Stuttering and Family history according to gender

From: Eric Hayes Patkowski
Date: 10/8/01
Time: 10:10:57 AM

I'm not sure who you are addressing, but in terms of stuttering in my family, my mother stutters (though now it's not so noticable), and my father told me a while back that he stuttered mildly when he was a kid.

Re: Stuttering and Family history according to gender

From: Robb
Date: 10/8/01
Time: 5:34:03 PM

I used to hear a story about how my father stuttered when he was a kid. The funny thing about that story was that it was always told to me by my mother. My father, God rest his soul, never really talked to me about it. In fact, today, that's one of the things I wonder about now. At the time it was officially confronted in my family, i.e. speech therapy, we talked about it, but only enough to get me through it. There was encouragement. My parents were wonderful. But when it was over, and the therapy seemed to work, that was it. Sure, occaisionally my mother would ask. And I'd offer the minimal "fine." It seems that I, not just my family, wanted not to talk a great deal about it once I was no longer "different." Your question has made me want to call my mother and ask her about it. I'll let you know what she says.

Re: Stuttering and Family history according to gender

From: Bonnie Weiss
Date: 10/18/01
Time: 7:22:21 PM

Sorry to be so long at responding to you. My uncle stuttered. He was my mother's brother. I don't know of anyone else in my family who has stuttered.

Grand Pioneer, my Toastmasters Club here in Buffalo, has about 25 men and 9 women. I'm the only one in the group who stutters, though there is one woman who attends who is from Australia and is interested in "learning" to speak English the "American" way!

BTW, two of the men from Toastmasters were guest speakers at our last NSA meeting. They did a wonderful job, and were very impressed with the chances most of the NSA members take every day!

Bonnie

Taking it to the Limit

From: Bobby Childers
Date: 10/7/01
Time: 11:17:31 PM

I loved your stories of triumph. Speaking from my own experience of avoiding public speaking situations for many, many years, and then being thrust into one only a few weeks after my speech therapy began. I know the fear of walking up to the insurmountable mountain, looking it in the eye and wanting to run for my life. But now I also know the thrill and the ecstasy of climbing the peak and looking down.

Since my first public speaking experience, I have given a few (one was almost 700 people), and though I still fear the mountain, I know that I can place my flag on the peak.

Excellent work, all of you are superb role models for the younger stutterers amongst us.---Bobby

Re: Taking it to the Limit

From: Robb
Date: 10/7/01
Time: 11:51:51 PM

Thanks, Bobby. That means a lot. And I especially like your mountain analogy, because that's exactly what it seems like. Public speaking for PWS seems like an insurmountable task, but the feeling of conquering it is unlike anything else. It's hard to explain to someone who is not a stutterer, which is why I never really articulated the things in my paper until I was asked by Judy to do so. I know a few other PWS, but none with whom I'd share those kinds of feelings. Anyway, thanks again!

Risk Taking and Desensitization

From: Steve Hood
Date: 10/8/01
Time: 2:20:25 PM

Bravo !! Thanks for sharing.

Desensitization takes a degree of risk taking -- a degree of giving up some of the safety of where you are now, and venturing into the unknown of the future. Even if the present is not very good, it is at least known to some extent; hence, it may be difficult to leave. I think it helps to view risk taking more and more as a challenge, rather than as a threat. This is a more positive way of viewing it.

In pushing the envelope, you have all done brave things !!!!

I think people may make the mistake of thinking that following desensitization, you will "learn to like" the thing(s) to which you are being desensitized, but I believe this is not necessarily the case. You may never like it !!!! (I doubt that I will ever like the taste of liver, or squash.) But, following successful desensitization, there will be an increase in the ability to cope with, and tolerate, the target.

You may in some cases learn to like it, at least a little, but if this happens, it is an added bonus. But the goal is coping and tolerating, not liking.

This takes motivation -- lots of it. And it takes some guts, too.

(I believe I will never like the taste of liver.)

Thanks for sharing some of your desensitization experiences.

Risk Taking

From: Michael Sugarman
Date: 10/8/01
Time: 10:48:06 PM

Thank you all for sharing your personal stories. You did "push the envelope".

I wanted to share a challenge that happened to me. For three years I've given a talk to my daughter Rebekah's grammar school class on ISAD and stuttering. However, last year, Bekah's classmate said outloud during my talk, "Rebekah your Dad stutters!". A wave of shame and embarrassment overtook me. I felt vulnerable.I finished my talk. (Rebekah has gone to many nsa conventions and parties) However, this time I was identified by her peer. We went out for tea and hot chocolate. We talked about my stuttering. Whoosh. "How much information do I want to share with my daughter". I shared some painful memories.

The biggest challenge for me as a father is when to share with my daughter. "Do I let her in?" I decided to share age appropriate stories-I think.

I felt we grew closer that day. She now knows her father sometimes stutters. And its ok.

Michael

Re: Risk Taking

From: Steve Hood
Date: 10/9/01
Time: 11:16:06 AM

Hi, Michael

Your daughter is extremely fortunate to have you as her dad. :-)

Re: Risk Taking

From: Bernie Weiner
Date: 10/9/01
Time: 7:29:29 PM

Hi Michael, Thank goodness you are able to talk with your daughter about your stuttering early in her life. I never talked with my two kids(now grown) about my stuttering until after my first NSA convention. By then, one was a senior in high school, and one just graduated from high school. It was funny, but when I finally tried to talk to my son about my stuttering and the convention, his reply was, "what is the big deal, so you stutter." To them I was just their Dad, not a stutterer. Today, I can share more openly with them about my support group and my "stutter" buddies. I think they are really happy for me that I have become so much more open now.

Re: Risk Taking and Desensitization

From: Robb
Date: 10/18/01
Time: 11:21:16 AM

You're right. Even though it has become easier for me to get up in front of a group and talk about the rap lyrics of Eminem, that doesn't mean I especially like doing it. In fact, I'd rather be at home most nights than getting up in front of 80 kids (130 next semester, apparently) and TALKING, the one thing that, for as long as I can remember, has given me fits and anxiety.

Just because I'm OK with it at this point doesn't mean I've embraced it, nor that I am willing to take on new challenges of public speaking just because I can. I did this primarily to confront a fear. Now that the fear has been conquered, I continue to go to that classroom every Tuesday because, quite frankly, I need the money. But every night when I walk away from that room having NOT made a fool of myself -- at least not because of my speech -- I feel good.

Re: Role of self-talk in desensitization

From: Robb
Date: 10/18/01
Time: 1:42:18 PM

1) Do you DISPUTE your negative self-talk and REINFORCE your positive self-talk on regular basis before you "PUSH THE ENVELOPE"?

For me the best preparation for speaking well has been proper preparation of the material i plan to present. To be honest, I've never heard the term "self talk," but based on what you said, I think I understand it. I did some of that. I tried to remind myself that people largely didn't care, that if I concentrated I'd be fine, that even if I stuttered, the students would not react according to the audiences in the dreams many of us have had. So, yes, I did do some of that. And while it's been stated here that a preferred mode of operation would be to put more focus attitudes ... I'm reminded of a line in the film "All the President's Men." A man, when asked if G. Gordon Liddy would succumb to pressure to talk to authorities investigating the Watergate coverup, said he was at a party with Liddy once and Liddy put his hand over a candle. He held it there until the flame burned his flesh. Someone asked him what's the trick, and Liddy said "The trick is not minding." I use this analogy to point out this: It would be nice if "not minding" worked for us and if we could focus our engery on that, that would be swell. My situation and where I was in my life with my speech didn't allow for that. I didn't have a whole bunch of time to refocus the way I look at my speech to the point where I thougt I'd be OK with that approach in time to teach my class. In practice, for me, calming myself down with reality checks and dogged preparation were the things that worked for me. I still felt physically ill, but I'm not sure that was entirely based on that fact that I stutter. I agree with some of the comments to the effect that public speaking is a fear across the board for people from all walks of life. In fact, it's the minority of people who enjoy it. We have that in common with "fluents." But my psychological reality has been that my speech has played a large role in why I've been afraid to speak in front of a group.

"2) When you have done it, has it helped?"

see above

"3) Do you consciously do a SELF-TALK conversations before a talking situation?"

"4) Do you consciously work through your residual emotions of shame, guilt or residual anxiety after a tough speaking situation? (e.g. when I have had a rough speaking situation, for example, when ordering my meal, I use this self-talk: a) I would like to have done better. b) So what if, I did not speak as flowingly as I wanted? c) Tough. d) Fertilizer happens. :-) d) Anyway I ordered what I want to eat. e) Just because I did not use my speech management techniques as well as I wanted to, it is no evidence that with practice in the future I cannot do better."

As a reporter, I end up talking on the phone and in person to many people every day. Every so often during a phone interview, things will go horribly awry. I remember a case a few years ago where I had to call an attorney about a case. When she came on the phone she seemed very arrogant and not at all very pleasant. I could barely get out who I was, who I worked for and what my title was. She began to condescendingly finish my sentences for me, cut me off, etc. With each exchange I felt smaller and smaller until, after ending the conversation prematurely, I left the building for a few hours to privately lament my failure to communicate and how, surely, my career would go no where because I can't be counted on to perform when needed. A short time later I felt better. I began to realize that fatigue and lack of preparation for the interview were just as much a factor in what happened as my stuttering was. That hasn't happened for a while. And the more comfortable I get in my job, I think, the less likely those situations are to arise.

"5) Do you think, as I do, that using BOTH SELF-TALK and pushing the envelope BEHAVIORS, the desensitization would become more effective and be more efficient than using either self-talk alone or doing the envelope pushing exercises alone?"

I don't know. My guess is that all the self talking in the world won't do anyone any good unless it's used in practice with stressful speaking situations.

Envelope-pushing exercises aren't for everyone. As was stated earlier, fear of public speaking isn't limited to stutterers. I faced my challenge for several reasons: I wanted to beat this thing, yes, but I also, as my paper states, wanted to try teaching. To that end, I necessarily had to confront this thing. With a fear this personal and this intense -- as public speaking is for many people -- I think people need to deal with it the way they need to deal with it. If self talk is the answer, great. If deep introspection and meditation is the answer, great. To each their own, I guess.

Re: Risk Taking

From:
Date: 10/18/01
Time: 11:28:50 AM

Comments

I love this post. It at once shows the brutal honesty and pure compassion children are capable of. I like the honesty in this case. Yes, we, people who stutter are out there. And while it may seem like the child was pointing this fact out in a moment of ridicule, it probably was a lot more innocent than that. Kids notice differences, they just haven't been socialized yet to ignore them. We are socialized that way, which, I think, results in automatic stigma.

I also loved your daughter's reaction. You've obviously done something right with her. She could have been embarrassed -- as you were -- but she took things exactly as she -- and everyone else -- should take them: in stride, no big deal, so what. So the guy stutters, who cares, it changes nothing about him inside or the words he's speaking. Your young daughter knows this better than many adults. Although I'd add that most of the apprehension on the part of the stutterer as it relates to expectations of audience reaction are, as has been stated here eloquently, a product of the stutterer's fear. Most people simply don't give a damn. Anyway, for whatever that's worth. But I loved your story. It touched my heart. Thank you for sharing it.

Pushing the Envelope

From: T Pickens
Date: 10/9/01
Time: 10:59:36 PM

Mr. Mike Hughes,

I would like to know your view/perception on how you feel Speak Easy has helped to make you a more fluent speaker.

T Pickens

Re: Pushing the Envelope

From: Mike Hughes
Date: 10/10/01
Time: 7:36:48 AM

Speak Easy has made me a more fluent speaker due to several things: knowledge, more knowledge, and the repetition of knowledge.

Speak Easy publishes a monthly magazine. It is not a newsletter that deals mostly with the organization; rather it is a magazine devoted to the subject of stuttering. The articles are both short and long, even though most members prefer short ones. Lengthy articles are often required to discuss a subject in depth. As an example, the statement that "Desensitization is necessary to attain fluency." does little to explain the power that desensitization has. A lengthy article, containing several appropriate personal stories, can be much more effective.

This magazine, "Speaking Out," is pro-stutterer and pro-knowledge. It provides a great deal of information (28 pages each month) about many aspect of stuttering. It does not promote "fluency clinics," but does feature explanations of their techniques. It focuses on communication rather than fluency. It focuses on "living/coping with a stutter" rather than demanding fluency. It features information on a wide range of topics: Intensive programs, electronic fluency devices, Speaking Circles, stuttering conference speeches, legal issues, the McGuire Program, Toastmasters, strategies for parents with stuttering children, research papers, and personal stories. More personal stories. And even more personal stories. The membership has repeatedly expressed a desire for as many "personal stories" as they can get.

This knowledge is repeated. Like any similar organization, Speak Easy's membership is constantly changing. Some members have stayed for 18 years; others join for a couple of years to get the knowledge they need, then move on to other aspects of their lives. To ensure all members get knowledge in all areas, subjects are touched upon repeatedly. This has the added benefit of reinforcing lessons learned earlier.

Members are encouraged towards communication rather than fluency. In fact, they are frequently warned about serving at the altar of the "fluency god." The personal stories often confirm the ability to overcome stuttering difficulties and achieve success through communication rather than fluency. We all learn that we are "not alone" and that every victory is to be celebrated rather than focusing on every minor setback. Humour is used frequently. "Stuttering, like life, is too important to be taken seriously." "Stuttering and sex should be laughed at because, you know, they're funny." We'd rather chuckle at ourselves and move on than dwell on some, probably imagined, misfortune.

Of course, the telephone is a frequent target in "Speaking Out." There are many articles about the telephone, and advice from many members. It was through their advice that I learned how to approach the phone. Before, when it rang, I would automatically stop breathing -- hold my breath -- and try to carry on a conversation. Repeated advice has told me to do something different -- like focus on breathing. Before making a phone call, I would pick up the phone, stop breathing, and try to talk without air. Now, I take several deep breaths before dialing and remind myself to keep breathing during the call. Sound like simple advice? It is! But only through the repetition of knowledge and stories of personal accomplishment did I learn to incorporate these lessons into my daily living.

I could go on and on, but I've gone on too long already. The answer to your question is that, through knowledge, many organizations for people who stutter can do a great deal to improve lives. First you find out that you are not alone, then you find out how to cope with stuttering. Pretty strong lessons. I encourage you to join the organization of your choice. It worked for me!

Mike

Role of self-talk in desensitization

From: Gunars K. Neiders
Date: 10/12/01
Time: 12:40:00 PM

Mike, Robb, Eric, and Bonnie,

I really liked all the stories. Thank you for sharing them. I found that you guys share a lot with cognitive behavior psychology tenet that fear confronting behaviors, as you all have recounted, plays an important part in desensitization. You have all done a good job at this.

It appears you are also aware of the role of that self-talk plays. Self- talk can be both negative as in your story, Robb: 1) "The very next thought was always, "But that will never happen. THERE'S NO WAY I COULD TEACH TO A ROOMFUL OF STUDENTS." " 2) "As an adult, I continued to think that I "couldn't" get up and speak because of my stuttering."

Or self-talk can be positive as you, Robb, said at the end: "When I stepped into that classroom and began to speak, I'd beaten it. The menace that kept me from doing so many things in my life and bludgeoned my self-esteem via the laughter of schoolmates, couldn't take this away from me. I'd won."

Ed, you gave a good example of how to DISPUTE or CHALLENGE your negative self-talk, "I realised that most of the fear and anxiety I had when it came to public speaking revolved around what others thought of my stutter. This is SELF-DEFEATING (capitals added) -- I have no control over other peoples' thoughts, and no amount of HECKLING (typically, this never happened, I just let myself get carried away by the possibility) or SUPPORT from them will MAKE ME ANY MORE FLUENT (capitals added). Once I realised this, it was a liberating thing, it released me from the majority of the STRESS I FELT about talking in front of others. " This is an example how DISPUTING can change feelings.

What you Robb and Ed have done is re-invented one of the main principles of cognitive behavior therapies (such as REBT): Firstly, SELF-TALK is important factor in how you FEEL. Secondly, self-talk can be DISPUTED and CHALLENGED. Finally, that SELF-TALK can influence how you FEEL.

My question to ALL of you is:

1) Do you DISPUTE your negative self-talk and REINFORCE your positive self-talk on regular basis before you "PUSH THE ENVELOPE"?

2) When you have done it, has it helped?

3) Do you consciously do a SELF-TALK conversations before a talking situation?

4) Do you consciously work through your residual emotions of shame, guilt or residual anxiety after a tough speaking situation? (e.g. when I have had a rough speaking situation, for example, when ordering my meal, I use this self-talk: a) I would like to have done better. b) So what if, I did not speak as flowingly as I wanted? c) Tough. d) Fertilizer happens. :-) d) Anyway I ordered what I want to eat. e) Just because I did not use my speech management techniques as well as I wanted to, it is no evidence that with practice in the future I cannot do better.

5) Do you think, as I do, that using BOTH SELF-TALK and pushing the envelope BEHAVIORS, the desensitization would become more effective and be more efficient than using either self-talk alone or doing the envelope pushing exercises alone?

Looking forward to your answers,

Gunars

Re: Role of self-talk in desensitization

From: Mike Hughes
Date: 10/12/01
Time: 3:56:37 PM

Gunars:

Great to hear from you again!

Many years ago, I read several papers/essays/stories that mentioned the benefits of "self-talk." I am not a fan of "psychobabble" but some time later, decided to give it a try. It made an important difference in two ways:

ONE: Like many stutterers, I skipped over my successes and dwelled on my failures. While I may have been fluent 92-94% of the day, the only speech I remembered was the 8-6% stuttered speech that I had struggled with. It darkened my days - shortened my vision - consumed my life. No accomplishment was as important as my failures. Stuttering reinforced stuttering.

TWO: My view of myself was of a person who stuttered. Not as an electronic technician, not as a husband and father, not as someone who likes to read, not as someone with many other attributes/skills/talents. No, I was a person who stuttered. (Perhaps that's why I hate the foolish acronym PWS; I'm a "stutterer.")

Many changes happened in my life. Amongst them was a determination to introduce "positive self-talk" into my life. I worked hard at, and was successful, in forcing myself to forget instances of stuttering during the day and instead focus on what I had accomplished. My focus was not on speaking, it was on accomplishment. I refused to let myself dwell on the negative and made myself remember the positive.

I got the lawn mowed, Good! That was positive! I went to the store and brought home what I needed, Good! That was positive! I managed to eat the supper my wife prepared, Good! That was positive! Etc., but you get the idea.

I purposely did not do a self-talk before a talking situation, that would have called attention to the situation and put even more stress on it. Instead, I developed a technique NOT to anticipate speech. I'd count the change in my pocket, think about transferring money between my savings and checking accounts - anything to avoid the error stutterers make in attaching too much importance to speech.

After speaking, I purposely and consciously avoided thinking about how my speech had gone - positive or negative. It was toughŠ. As stutterers, we dwell on our speech failures, place unnecessary importance on them (our listeners rarely notice and are even less likely to care), and reinforce the failures by granting them prominence that they really do not deserve.

Desensitization is not "doing envelope pushing exercises." Desensitization is learning to limit the effect that stuttering has on you. Pay less attention to it, and it becomes less important in your life. Like the old saw:

"Don't trouble trouble 'til trouble troubles you."

Mike, let us respectfully agree to disagree :-) :-)

From: Gunars K. Neiders
Date: 10/12/01
Time: 6:56:33 PM

Mike,

Well written answer. There are many ways of how people can help themselves. I am happy that you have found a way to work on your attitudes. :-) However, I have much more happy because I have found a way that works for me. :-) :-)

Gunars

Re: Mike, let us respectfully agree to disagree :-) :-)

From: Mike Hughes
Date: 10/12/01
Time: 7:38:40 PM

Gunars:

Great!

As I've often said when questioned about what works for stuttering:

"Stuttering is very much 'Different strokes for different folkes - What works for one, may not work for another."

As long as we are each happy with who we are, let's learn to live with that.

Mike

Re: Role of self-talk in desensitization

From: Eric Hayes Patkowski (Ed, but not Ed!) Date: 10/16/01 Time: 8:40:22 AM

Gunars said "My question to ALL of you is:

1) Do you DISPUTE your negative self-talk and REINFORCE your positive self-talk on regular basis before you "PUSH THE ENVELOPE"? "

I'm not to up on the vocabulary of recent therapies, as I've not had "real therapy" since 1985/86, and only had a couple weeks here and there since. What I DO do, which helps me somewhat, is remind myself that most of the people I know are not fond of public speaking, and I've seen them try to get out of public speaking events. I realised that even for fluents, they are not more likely than I am as a stutterer to enjoy public speaking, which I think I'd always assumed as a kid. Fluents are no more happy or no more well adjusted than I am, and I am no worse off than they are. I'd always assumed otherwise, and the stress of being put "outside" an arbitrary norm was unhelpful.

"2) When you have done it, has it helped?"

Again, not being sure of the terminology or process which you speak of, I can say, for myself, that placing my audience in context (more often than not they are my peers, my colleagues, my friends, with shared or similar interests), assists me in taking the bite of out of an otherwise unpleasant experience. I still stutter at times, but it's not the catastrophic event I'd let it be when I was younger.

"3) Do you consciously do a SELF-TALK conversations before a talking situation?"

It's hard to say (no pun intended), because again, I don't know the terminology, but I do, at times, map out what I want to say before I say it when I do have public speaking roles. I don't know if this is because I am a stutterer or if it's because I am about to speak in front of a group.

"4) Do you consciously work through your residual emotions of shame, guilt or residual anxiety after a tough speaking situation? (e.g. when I have had a rough speaking situation, for example, when ordering my meal, I use this self-talk: a) I would like to have done better. b) So what if, I did not speak as flowingly as I wanted? c) Tough. d) Fertilizer happens. :-) d) Anyway I ordered what I want to eat. e) Just because I did not use my speech management techniques as well as I wanted to, it is no evidence that with practice in the future I cannot do better."

I think I used to fret and fuss about what I could have done, or worried too much about what I did do, but I can't go back and change things, I can only go forward. It's not always that simple, it doesn't always work because sometimes I'll still kick myself for something I did or didn't do, but really, what's done is done and I try to not get caught up in self-analysis. I will do so when I'm part of a public event that draws 10 instead of a 100 people, mind you! :)

"5) Do you think, as I do, that using BOTH SELF-TALK and pushing the envelope BEHAVIORS, the desensitization would become more effective and be more efficient than using either self-talk alone or doing the envelope pushing exercises alone?"

Again, not too sure about the terminology, but I think real-life practice, ie, what I've done to "push the envelope" has been of more use to me than remaining confined in the therapy room. Back in high school and college, I used to sit in my room and practice what I'd say when I knew I had to do any sort of public speaking. I'd map out my responses to any multitude of questions that could arise. And when it came time to do whatever presentation I had to do, I'd get all flustered and stutter through it, and the audience would fidget and I could hear my own heart and the hearts of those around me beating.

I'd not addressed the causes of my own anxiety, I'd not really focused on the audience -- I'd just concentrated on the negative aspects of my speech, contentrated on the worse case scenario of, "oh my gosh, I just know I'm going to stutter, people are going to freak!".

Mind you, people knew I stuttered anyway, so once I got over that hurdle, it was a matter of realising 95% of the people in my classes hated public speaking as much as I did, but for different reasons. I wanted to speak on subjects I'd researched or worked on -- they hadn't done research or assignments, it was fairly obvious, so of course they didn't want to get up in front of class.

I guess the short answer to your question is that a two-pronged approach would work IF fluency is your goal.

Eric (Ed, not Ed)

Congratulations!!!

From: Christy Mayes
Date: 10/13/01
Time: 10:08:29 PM

Hello, Bonnie. My name is Christy and I am a student at the University of South Alabama. I am majoring in Speech Pathology. I saw the title of your article and it really caught my eye so, I just had to read it. It was a very inspiring article. I wanted to congratulate you on your success. Keep up the GOOD work. Christy

Re: Congratulations!!!

From: Bonnie Weiss
Date: 10/20/01
Time: 7:18:14 PM

Thanks for your kind words, Christy. It's always good to know that students in the Communicative Disorders are "checking" in on articles, conferences, etc. pertaining to stuttering and people who are stutter.

Bonnie

pushing the envelope

From: Natalie Bayer
Date: 10/14/01
Time: 10:36:12 PM

I think it is great that an individual can overcome their fear in stuttering while presenting if front of a large audience. It is true that one has no control over the audience's thoughts, but i feel that the audience will be great listeners. I think these were great papers to read to make stutterers feel more comfortable in speaking in front of audiences. It is not as bad as you will expect to be.

Re: pushing the envelope

From: Bonnie Weiss
Date: 10/20/01
Time: 7:23:05 PM

Natalie, I'm finding that people are really more interested in what I am saying that in HOW I am saying it. Toastmasters and being very involved in the NSA has really helped me to be a better speaker and to have fun doing it too!

I am blessed because I stutter. I'm finding that I have more opportunities to speak than many of my friends who are fluent do. I was talking about Toastmasters at lunch with some friends of mine at the University, and one of them said that she "could never" join Toastmasters or do any speaking in front of an audience. Interesting, huh?

Bonnie

who should initiate?

From: Kate Rodgers
Date: 10/16/01
Time: 7:34:47 AM

I hope this is an OK question to ask. I'm a 4th year undergraduate student at the University of Sheffield in the UK.

All the experiences you report of desensitisation seem to have been initiated by yourselves perhaps with the support of family memebers. In the fluency class we are taking at the moment we have been shown ways to lead people through the desensitisation process. Do you think it would have helped if you had had an SLP to guide and support you through this process and perhaps to initiate it or is it something only you can make the decision to begin and it would feel wrong/ not work if suggested by another person?

Re: who should initiate?

From: Bonnie Weiss
Date: 10/20/01
Time: 7:29:02 PM

Hi Kate, Actually it was an SLP who suggested that I pursue some of my dreams, and encouraged me along the way. My family members, siblings and parents, were never very encouraging. My mother was very negative about my stuttering (her brother also did), and my father just tried to protect me from situations that would mean that I'd have to talk when I was a kid. My siblings are very supportive now that I have gotten past my fears.

I do think, however, that therapy today is much different than it was 50 years ago or so.

Take care.

Bonnie

Re: who should initiate?

From: Eric Hayes Patkowski (Ed, not Ed)
Date: 10/16/01
Time: 9:15:13 AM

"All the experiences you report of desensitisation seem to have been initiated by yourselves perhaps with the support of family memebers. In the fluency class we are taking at the moment we have been shown ways to lead people through the desensitisation process. Do you think it would have helped if you had had an SLP to guide and support you through this process and perhaps to initiate it or is it something only you can make the decision to begin and it would feel wrong/ not work if suggested by another person?"

Different people respond differently. For myself, I've not responded well to therapy. That's probably not 100% true -- I think I've stubbornly resisted much of what's been presented to me. That may be related to my own internal feelings of "experts" and "academics". I've found what worked for me, at the time I needed it to work.

I think, if the client is young enough, SLP intervention can be of great use. Looking back, I don't think any of my therapies focused on desensitisation, it was more on breathing and relaxing and attainting fluency, all good and fine but it doesn't make speaking in public any less of a terrifying experience. If the therapy had incorporated something to confront my own fears and anxiety, maybe I'd feel differently. Biofeedback was great because I'd become relaxed. Breathing exercises were great because I'd become relaxed. Hypnosis was great because I could relax "in my happy place". None of these, while great in giving me the tools to relax when I had time and the space to use them, really addressed the actual act of speaking in a non-clinical environment, and certainly nothing addressed being prepared to talk in front of large crowds.

If I were in therapy now, I think I'd be more resistant, because I'm more set in my ways, I know what works for me and what doesn't, and I'd rather worry about activist issues than worry about how to make my speech 100% fluent.

If the intervention happens early enough, before the client is set in her ways, I'm sure great things could happen, particularly on issues of desensitisation. If the client is older and receptive, intervention may be of benefit as well.

Certainly, it is helpful to let the client know that the world is not like the sterile environment of the clinic, to let them know that they can't go through life talking like they're ordering fish and chips at the local fry shop (ie, "I'll have 2 fish strips and 1 large basket of chips, please." -- all mapped out and accounting for no deviations in the order, maybe accounting for substitutions if they are out of fish) -- let them know alongside fluency, not doing anything to confront internal and external issues isn't really going to be helpful.

That last part is my own belief -- others may disagree, fluency may be the ultimate and only goal. Surely therapy has evolved?

Eric

Pushing the Envelope (ED)

From: Chalsea Jones Graduate student
Date: 10/16/01
Time: 9:07:27 AM

Ed, thankyou for sharing yur story. The ability to push the envelope is inded pushing your own comfort level and your fears out of the way. this is a lesson that can be generalized not only to persns who stutte, but to persons wo do not stutter. By placing yourself in these various situations, do you feel you grew more or you are continuing to grow as a person who stutters?

Re: Pushing the Envelope (ED)

From: Eric "Ed" Hayes Patkowski
Date: 10/16/01
Time: 9:32:29 AM

"By placing yourself in these various situations, do you feel you grew more or you are continuing to grow as a person who stutters?"

I'm experienced more than I would have had I kept avoiding uncomfortable situations. I'm still a quiet guy (for the most part), but people in my wide circle of friends and acquaintances have come to know I'm a quiet guy who has things to say and feels free to say them, and they are generally receptive.

Specific to your last part of the question, I think all of us continue to grow based on experiences and every-day situations and circumstances. A bad day can set any of us back a bit, an argument or disagreement in front of a crowd can bruise any of our egos, but we learn how to deal with it and it becomes part of our person.

** Digression ahead -- by the way, you open up another issue, that of labels. I've long had issues with being labeled a stutterer, yet that is what I am. I'm a person like anyone else, yet I'm not known for my charm or my dashing looks (okay, good reasons for that!), I'm known for my lack of fluency. This was reinforced throughout my years of therapy, the focus of which was to eradicate or severely limit my dysfluency.

The problem with that is that my whole identity through school and beyond was "the guy who stuttered". You take away my dysfluency, and what do I become? Not the dashing charmer, but "the guy who used to stutter"?

I've got no real solution or suggestions for this, mind you. I've certainly used labels, from "fluents" to "PWS". Is it even a problem? I've known many "PWS" who hate being tagged as such.

I'm more ambivalent about it, but on the issue of desensitisation, are there techniques being taught to neuter the negative power of labels, particularly their impact on younger clients?

Eric

Pushing The Envelope

From: Tracy MaGill
Date: 10/16/01
Time: 6:45:13 PM

This panel taught me that just because a person is a stutter that doesn't mean that they can't improve their fluency. By pushing the envelope, and for most that meant speaking in public, many have become quite fluent. I knew one of the panel participants, I have heard him speak, and never ever knew that he was a person who stutters! Thank you ! Tracy

Comments

From: Cristel Fudge, Graduate Student, Baton Rouge, LA
Date: 10/17/01
Time: 9:23:29 PM

Mr. Murray-I am glad that you have overcome your fears of speaking in front of others. It is so wonderful that you teach! Mr. Patkowski-I am happy that you have come to the realization that what you say is important, not how you say it. I am glad that you are now much more comfortable with speaking in front of people. This is a great accomplishment whether you stutter or not. Mrs. Weiss-I think it is great how wonderful you are doing! Toastmasters sounds like it is truly a blessing.

I wish all of you the very best! I can truly identify with your fear of speaking in front of others. It really impresses me that all of you are doing so well! I do not stutter and never have, but I have a terrible fear of speaking in front of a large group. I turn red, start sweating, shake like a leaf, and I have even cried a few times. I am much better, but my fear is still very strong! I hope that I can become as comfortable as all of you!

Re: Comments

From: Bonnie Weiss
Date: 10/20/01
Time: 7:33:48 PM

Cristal, There must be a Toastmasters group in Baton Rouge! I encourage you to attend one of their meetings.

At our last NSA meeting in Buffalo, two of my Toastmaster friends came to our meeting to talk about "their" fears of speaking in front of groups. I think that many of us who stutter think that only PWS's have those fears. It is so far from the truth.

Thanks for responding to our articles!

Bonnie

Robb Murray

From: Emily Pleiss
Date: 10/17/01
Time: 10:11:23 PM

This paper was very eloquently written, and captured my attention.It is interesting to read about experiences of an individual in my hometown. What a tremendous accomplishment to teach a Mass Comm. course at MSU. Your wife seems to give you great support when you need it the most, and perhaps she helps you through difficult situations.

Re: Robb Murray

From: Robb
Date: 10/18/01
Time: 1:48:29 PM

Thanks for your thoughts. And yes, my wife is very supportive. She's an amazing woman. But her support has largely been unspoken. As soul-mates tend to do, we've developed in our six years of marriage a sort of unspoken understanding of each other's feelings.

I don't talk about my stuttering a lot. In fact, I rarely do. But she can tell when it's bothering me ... Like my first night of teaching. It wasn't just that she knew I was nervous, she knew why I was nervous. And when I came home that night, I knew she obviously was concerned about me, and I also knew that she understood what was going on.

I don't know a lot of people who stutter. I can spot them immediately, but I'm not a member of a support group, I don't get newsletters from national stuttering organizations, etc. Most of my experience has been me internalizing everything. That's my fault. If I wanted my stuttering to become a topic of discussion in our house, it would ... and she'd be there to help me.

Thanks again for your comments. Stop by the newspaper some time. I'll buy you a cup of coffee.

Bonnie Wise

From: Craig Stephenson
Date: 10/18/01
Time: 1:52:23 PM

Dear Bonnie, I enjoyed your story very much. People have commented on how brave I was to share my story. I think you are the brave one. It is one thing to share written words and another to share spoken words. Joining the Toast Masters is a real badge of courage. Just wanted to thank you for all you do and the support you give all the rest of us following the path you are making for us.

Re: Bonnie Wise

From: Bonnie Weiss
Date: 10/20/01
Time: 7:37:09 PM

Hi Craig... When did we change my name to "Wise"? ;-)) Just kidding.

Thank you for your kind words. I just know that you are going to do GREAT things for people who stutter in Idaho. I'm looking forward to hearing all about the new chapter in Idaho in 2002!

Response to pushing the envelope

From: Jennifer Black, SLP grad student
Date: 10/20/01
Time: 11:12:05 AM

Reading all four of your stories was truly uplifting. I currently am taking a Fluency course at the University of Pittsburgh, and although we've learned about the fears, apprehensions, etc. of those who stutter, it was just so much more meaningful to hear if from you. Although I can not identify with your fear of speaking, I can identify with the emotions you've felt, the nervousness, the apprehension, the stomach upset (!) in situations that are challenging for me. Thank you for posting those stories, and I know they will help me to be a better clinician in the future.

Re: Response to pushing the envelope

From: Bonnie L. Weiss
Date: 10/20/01
Time: 7:40:24 PM

Hi Jennifer, It was good to hear from you. I'm always so pleased when students in the speech path. field have a chance to meet and hear from people who stutter.

And yes, I'm sure you will be a good SLP! Have you attended a meeting of the Pittsburgh chapter of the NSA.

Tell Scott Yaruss "Hi" for me, okay?

Bonnie

Pushing The Envelope

From: Kris
Date: 10/20/01
Time: 11:35:00 PM

Thank you for sharing your stories! You are all very motivational!

I am a speech therapist in the public school system and I was wondering if you had any advice or words of wisdom about parents. Years ago I had a student who stuttered and his parents seemed to be "pushing HIS envelope". They arranged for him to take part in many small and large group activities hoping this would help his speech. Although their intentions were great, I wonder if this was in his best interest. He truly was not ready for some of the tasks he was involved in. Any thoughts?

Thanks for your help!

Re: Pushing The Envelope

From: Eric Hayes Patkowski (Ed, not Ed)
Date: 10/22/01
Time: 8:52:31 AM

"Years ago I had a student who stuttered and his parents seemed to be "pushing HIS envelope"... He truly was not ready for some of the tasks he was involved in. Any thoughts?"

As they say, the road to hell is paved with good intentions. I'm mixed about this -- I think good intentions like the parents you describe lead to much stress and discomfort, but at the same time, left to my own devices, I would have relished never having to speak in front of groups when I was in school.

Part of the problem is not heeding what the PWS wants from therapy, or, absent therapy, what they want from life. Do shy kids who don't stutter get forced into group activities in the hopes they'll "come out of their shell"? I'm sure some do get put into these situations, I've no idea what the success rate is.

It's a hard thing -- I think a young PWS needs a little coaxing -- I know I did, but too much and it may just a bad deal all the way around. I think a good and honest talk with both parents and the child, figuring out what expectations are all the way around, what the PWS hopes to achieve through therapy, is important in figuring out what level of intervention is necessary, if any.

Eric

Re: Pushing The Envelope

From: Robb
Date: 10/22/01
Time: 10:41:40 AM

I have mixed feelings about this.

As a parent, I can see both sides of this. My children do not stutter, but if they did I think I'd be tempted, knowing what I've been through, to do anything for my kids that would prevent them from having the same experience. I'd think about the fear, in a room full of kids who, by there very nature, have no qualms about being cruelly blunt to other children. I'd think about all the risks they wouldn't want to take, all the challenges they'd pass on, all the people they wouldn't get to meet because they couldn't muster the courage to say 'Hi.'

I know how all those things feel. I've cried a thousand times over something I couldn't control. Even after therapy, sometimes there's just nothing you can do to get over the fear.

So on one level, it would be difficult for me to not try EVERYTHING that I thought might help take away that fear.

On the other hand ... The psychology of being young doesn't allow for a whole lot of rational thought. Even up to the early teen years, it's difficult to overcome the fear of being laughed at, or of being seen as different in a way that, for the most part, is seen in a negative light. Having said that, it would extremely difficult for me to send my little girl into a situation that I know, if she's like me, will tear her up inside. I understand to logic: Make them do it, they'll realize it's not the end of the world, and eventually they'll thank you for it. But I'm not sure that's true. Even for me, after I've taken on a challenge that seemed insurmountable, I'm still not keen on getting up in front of a group of any size and speaking. I'm thinking about this as I write and I'm realizing that, I'm not much help here. But if I had to make a decision now, I'd probably try and set up a highly controlled desensitization situation where my Emma was very prepared for what was going to happen. Then I'd give her a little nudge to push herself. I'd pray things would go well. But if they didn't, I'd stop and try again when she's ready.

The role of the parents is so, so, so important in this situation. I wish I could be of more help. All I can say is compassion is the key. Compassion, understanding, sympathy, strength, courage, encouragement, humor -- all of these things are important. Parents MUST be there to provide them all.

Comment

From: Keanna Gulley
Date: 10/21/01
Time: 8:51:55 PM

Hello! My name is Keanna and I am a senior at the University of South Alabama. My major is Speech Pathology and I am currently taking a class about stuttering. I read your article and it was very inspiring.

Pushing the Envelope Mike

From: Shecoda Wilson
Date: 10/21/01
Time: 10:26:14 PM

Mike all things happen for a reason and God would not put anything before you that you can not handle. Stay strong and continue to push envelopes in life and you will always see positive results.

Pushing the envelop

From: Susan Kenney
Date: 10/22/01
Time: 5:21:34 PM

You have all made big strides in your lives by pushing the envelop! Your internal motivation as well as maturity were great assests. When you took the focus off how you are saying "it" and focused on "what" you are saying, it is amazing at how much you have to share with the world! Continue pushing the envelop and sharing your stories.

Pushing the Envelope

From: Margaret K. Griffo
Date: 2/1/03
Time: 2:16:21 AM

Thank you all so much for sharing your experiences. As an SLP in Alaska working primarily with children and adolescents, I wish you could all come and talk to the kids about the positive relusts form trying something that was fearful and scary. Preschool kids often do not show such great fear but older kids often share their greatest fears about speaking experiences in the schools. So often when we confront the fears in small easy steps progress is evident as well as perceived by the children. It takes such great courage at any time in our life to confront our fears.