CONTENTS This is a threaded discussion page for the International Stuttering Awareness Day Online Conference paper, The Role of Self Help/Support Groups in Determining the Outcomes of Stuttering Therapy, by Lee Reeves. Welcome From: Lee Reeves Date: 10/3/98 Time: 5:34:20 PM Remote Name: 22.214.171.124 Comments Welcome to the first ISAD on-line conference. I hope that the paper I submited has provided some helpful information as well as food for thought. Please feel free to comment or ask questions. Lee Reeves Suggestions for training programs? From: Judy Kuster Date: 10/5/98 Time: 12:47:54 PM Remote Name: 126.96.36.199 Comments Lee, thank you for your interesting paper! In it you state that a significant number of SLPs are "ill equipped with the counseling skills or experience necessary to deal with many of the issues that people who stutter must confront." In the best of all worlds, what would you consider to be minimum training/experience in "counseling" for SLPs to work more effectively with people who stutter? Re: Suggestions for training programs? From: Lee Reeves Date: 10/6/98 Time: 9:58:33 PM Remote Name: 188.8.131.52 Comments Judy, Thanks for a pointed and thought provoking question. In a perfect world the simple answer would be to reinstate a requirement in clinical practicum to diagnose and treat at least one child and one adult under the supervision of an experienced stuttering specialist. It is in this setting that the importance of identifying and managing the affective, behavioral, and cognitive aspects of stuttering should be reinforced. However, since that will probably not happen I think there are a couple of other alternatives. One would be to make Chapters 1 and 7 of " Clinical Decision Making in the Diagnosis and Treatment of Stuttering" ( Walt Manning) required reading for graduate students. These two chapters relate to qualities necessary to be a good clinician for the treatment of stuttering as well as the importance of counseling. Another alternative would be to require students to attend one or more NSP or other stuttering support group meetings. There are a variety of vieos available from the National Stuttering Project, the Stuttering Foundation of America, and others that present the "human" side of stuttering where counseling may be more important than specific therapeutic technique. It may be that many clinicians do indeed possess counseling skills but they have just not been taught that stuttering is a disorder that requires them to use those skills. Sugestions for training programs From: Les Anderson Date: 10/12/98 Time: 12:49:05 AM Remote Name: 184.108.40.206 Comments I enjoyed your article; however, I am somewhat concerned about your stating that an SLP can learn all there is to learn about all the ramifications of someone who stutters by attending one or two therapeutic sessions with someone who stutters. Being the President of a provincial stuttering association, I get many letters from frustrated parents telling me of some of the outrageous things that registered SLPs have told them about their child's stutter. Stuttering is not an easy affliction to understand nor is it easy for someone who does not understand stuttering to evaluate a child who is displaying the first signals of stuttering. I feel that it would most certainly take much more than a few sessions on a single case load for anyone to become proficient in understanding stuttering or someone who stutters. Les Anderson Re: Sugestions for training programs From: Lee Reeves Date: 10/14/98 Time: 12:55:32 AM Remote Name: 220.127.116.11 Comments Les, Thanks for your comments. I agree with your statements about stuttering being very complex. Poor training inevitably leads to the parent situations you refer to. I did not mean to imply for a moment that a student ( or anyone else) could learn all there is to know about stuttering by being exposed to one or two cases or by attending one or two self- help meetings. Judy's question was concerning my point about the lack of counseling skills many SLP's exhibit when attempting to treat stuttering. One of the real tragedies in the United States is that the American Speech and Hearing Association ( the body that accredits academic programs and sets standards for SLP certification ) dropped a requirement for masters degree level students to receive a minimum of hands on exposure to stuttering. While these students have usually had at least one graduate course in fluency disorders this reduction of hands on experience makes it possible for an individual to graduate with a degree in speech-language pathology and be clinically certified to perform therapy on children and adults who stutter having never been exposed to a single case of stuttering. My point to Judy was that in an ideal ( but real) world we would at least reinstate this basic requirement but take it one step further and require the supervisor to be an expert in stuttering. In doing so it would at the very least expose the student to what stuttering looks like and hopefully feels like. Being taught by a specialist the student would not only learn therapeutic strategies to enhance fluency but would also learn about the emotional or " feelings" side of the condition. It is through the realization that there is human element involved with stuttering that the need for counseling skills becomes evident. Unfortunately, it is not possible to teach students all there currently is to know about stuttering in a pure academic setting. It has been said that a college degree is simply a license to learn. It is ultimately up to each SLP to either gain as much knowledge and experience as they can about stuttering from a variety of sources or do what the ethics of the profession require and refer stuttering cases to someone more qualified. In my response to the initial question I was referring to a minimum of knowledge. I certainly agree with you though, Les, that much more is needed. Re: Sugestions for training programs From: Les Anderson Date: 10/14/98 Time: 4:15:52 AM Remote Name: 18.104.22.168 Comments Thank you Lee for the excellent explanation to my concern. I can fully understand your thought process now. I agree with you that many SLPs are ill equipped to recognize, diagnose or treat someone who stutters. This problem however does not begin or end with SLPs. In Canada, in British Columbia in particular, it is sadly the classroom teacher who recommends that a child or student be referred to the local school board's SLP. Though our provincial government pays for the SLP's services, many children still slip through the school system without the benefit of being treated in the early stages. Firstly, the teacher usually has no idea what the signals of certain speech avoidance's or patterns indicate and at times, "if" the child is referred, the SLP makes a misdiagnosis because he/she is not well versed in the field of stuttering. Our provincial stutterer's association is trying to set up a program to educate our teachers as to what certain signals represent when it comes to recognizing speech problems in small children. We are finding out that this is not going to be an easy task by any means. Even if we do educate the teachers to recognize some of the signals of stuttering, how do we in turn work with the SLP who makes the misdiagnosis? Being a life long severe stutterer, I can pick out a child who is starting to stutter in about thirty seconds after I start observing him or her. How does one convey this to a teacher or to an SLP. We most certainly can't start second-guessing the SLP's diagnosis without being questioned about our own qualifications. Being stutterers ourselves by no means qualifies us to diagnose or to second guess a university trained SLP. There is indeed a void in here that somehow has to be closed up but, how do we close that void? Les Anderson Re: Sugestions for training programs From: Lee Reeves Date: 10/14/98 Time: 10:07:53 PM Remote Name: 22.214.171.124 Comments Ah ! The ultimate question, Les. How do we fill that void? I believe part of the answer is to continue doing what your local group, CAPS, the NSP and many of the other consumer based organizations world wide are doing. We must continue to work WITH the professional community to improve the early recognition, diagnosis, and treatment of children who stutter or are at risk for stuttering. In my opinion the best way for us as members of self- help/ support group organizations to accomplish that task is to do the things I refered to in my article, ie., to educate the public and parents, to encourage early assessment and intervention , to help educate SLP's , and to support parents, children and adults affected by stuttering in every way we can. It is a long and slow journey but we are on the right path. self help groups From: Jeff Shames Date: 10/16/98 Time: 4:52:55 PM Remote Name: 126.96.36.199 Comments Lee, I really enjoyed your article. It presents an excellent overview of the role of the self help group in stuttering therapy. Many of us have felt that we must deal with our stutter on our own. You correctly point out that the opposite is true; that the existence of a support network will make success in the therapy process much more likely. Having visited a half dozen or so different chapters, it is fascinating to me that each is run differently, according to the needs of its members. An example of this is the presence of non-stuttering outsiders at chapter meetings. I understand that the NSP Dallas Chapter meetings take place in a clinical setting, and that slp students are encouraged (required?) to attend. I have been active in the NSP Manhattan Chapter since its inception four years ago. Early on, the decision was made to not permit non-stuttering outsiders to attend, except on special occasions. The feeling was that the meetings should be a safe haven from the outside world. Our method for educating others has been to speak at different educational settings. Many chapter members (myself included) have done this informally. Chapter Leader Elizabeth Mendez is coordinating the establishment of a speakers bureau. You are correct in saying that a self help group can be an excellent place for a person who stutters to learn about different therapy programs. This was one of my reasons for first joining a self help group six or seven years ago. It is interesting to see how my goals now have changed. Due to my own evolution as a stutterer (and several conversations with Vivian Sheehan), I have now developed a more militant attitude; that it is my right to stutter, if that's how my speech happens to come out at a given time. Clearly, dealing with one's stutter is an ongoing process, whatever the degree of one's fluency. Thanks for stimulating my thinking about this issue. Re: self help groups From: Lee Reeves Date: 10/17/98 Time: 12:39:58 AM Remote Name: 188.8.131.52 Comments Hi Jeff, Thanks for your comments. One point of clarification regarding the Dallas Chapter meetings. While we have been meeting at the Callier Center for Communication Disorders since our inception 16 years ago we have never been associated with them directly. The Center is farely centrally located and they have simply been good enough to allow us to meet there. Our relationship with the teaching and clinical programs of the university has evolved through the years. In the early days we ( I ) harbored more than a little frustration and anger towards the speech-language profession and to be fair they were not too excited about self- help groups either. While I always felt it was important for our group to be open to anyone interested in stuttering ( spouses,family members, employers, freinds, and SLP's ) I was always a little skeptical about what an SLP could bring to the table. However, as I began to get to know the folks involved with teaching students about stuttering I began to gain more respect for them. They also began to respect us for what we were doing and realized that we were not anti- therapy..... just anti- bad therapy. Gradually the barriers came down on both sides and we have long since had a very close and symbiotic relationship. I now believe that it is very important to open our meetings to SLP's and students. We have much to offer and they are genuinely eager to learn. We insist that they participate just like anyone else, ie., they may not simply observe. Students are required to attend one meeting but the truth is that many come back monthly because they get so much out of the meetings. While I respect other chapters' views on attendence I do not believe that allowing other people who are genuinely interested in stuttering to attend that the meeting necessarily becomes "unsafe" for those who stutter. I believe that part of healing is sharing with others who care. I have found that there are a lot of misconceptions that we who stutter have about those who don't. Having people who do not stutter at meetings can be very educational on both sides. I agree wholeheartedly with your last statement, Jeff. I also belive that stuttering is a lifelong journey and we are continually learning about ourselves.... and others. Good luck at the upcoming fundraiser for"Stutter Step". support and relapse From: Chuck Goldman Date: 10/18/98 Time: 10:00:05 AM Remote Name: 184.108.40.206 Comments Your straight-forward words are essential to the transfer, generalization and carry-over of any therapeutic intervention. To prevent relapse ongoing formal peer encouragement is a bonus. This point however is difficult to drive home to many clients who continue to view stuttering as an acute rather than chronic problem. For these individuals therapy should not be terminated until some ongoing familial or other outside support formal or informal can at least be offered. Re: support and relapse From: Lee Reeves Date: 10/18/98 Time: 9:35:51 PM Remote Name: 220.127.116.11 Comments I appreciate your comments and I agree.