This is a threaded discussion page for the International Stuttering Awareness Day Online Conference paper, Stages of Coping: A Stutterer's Journey from Denial to Integration by Louise Heite (Iceland). The presenter of this paper, has consented to have a personal email address posted here if you wish raise further questions and/or comments. Lou Heite - firstname.lastname@example.org Greetings From: Lou Heite Date: 10/1/98 Time: 6:31:56 AM Remote Name: 126.96.36.199 Comments Welcome to the discussion area for "Stages of Coping." I really do hope that we can get a lively discussion going here My main interest is to see how well the ideas that I have outlined in my article fit with other people's experiences. A caution: If anyone uses this space to promote their own favorite brand of therapy, to soapbox, to make personal attacks, or to post irrelevant material, I will not hesi- tate to ask Judy to delete the posting. Use the kind of good manners you would expect to use in person (why do I feel that I need to say something so obvious?!) and remem- ber that no matter how convinced we are of our own paths to recovery and coping, other people's experiences are just as valid as our own! With that schoolmarmish caution out of the way, let's hear from you all! Lou Heite Role of SLP From: Judy Kuster Date: 10/4/98 Time: 11:16:18 AM Remote Name: 188.8.131.52 Comments Thank you for your fascinating and insightful article. I'm wondering, how do a clinician and a client determine what stage an individual may be, and is that important to determine in order to be effective with that client in therapy? Is it important to facilitate progression through the stages and, in your opinion, can a speech-language pathologist do that effectively? If so, any suggestions how? Re: Role of SLP From: LH Date: 10/5/98 Time: 5:51:18 AM Remote Name: 184.108.40.206 Comments Hi, Judy. Good questions! Before I try to answer them though, I have to remind you that I am not a clinician, and any answers I might provide on subjects relating to clinical decision making are spun out of clear air and cloud wisps. It's a little presumptuous for me to answer directly. I would rather prefer to hear your own answers to your questions, and the answers of your colleagues. How would you apply these ideas to the way you handle clients? You know also that what I have presented is not a procedure but a paradigm -- a large outline of an idea into which many different specific expressions might fit. I certainly hope that nobody will be tempted to look at a client and mutter to him- or herself, "Aha! A Stage Four! Well, that means ..." On the other hand, I hope that this concept of staged progress might help the clinician recognize whether a person is really ready for, and up to, the demands of a particular therapy procedure, or whether the client has perhaps passed beyond the point where a given procedure is appropriate or even applicable. That said, I do think it should be fairly easy to determine grossly where someone is in the process of coping. Assessing the readiness of a client for any procedure is part of the job, so I am told. This paradigm is not really that different a way of thinking. You can usually spot the seekers, the angry people, the ones who are so lost in a grief-like state that they may be a danger to themselves. And if you aren't sure, ask the client! Some careful interviewing should reveal pretty quickly how the person feels about his or her speech and how they feel about being a person who stutters -- which need not be the same thing at all. Also, if the person's actions in therapy seem to belie their direct statements, that should be an important clue to how realistically they view their problem at a deep level. It can also be a clue to the presence of other, interfering problems that may need to be solved first before one can expect to make progress with speech therapy. Is it important to determine where a person is along this path in order to conduct therapy? Possibly not. But having a progression in the back of your mind can certainly inform your goals and decisions, and for the client it might help explain why you are asking him or her to do things that seem to be absurd. If you are trying to climb over a very large and foggy mountain to get to the town on the other side, it helps to have a map. Is it important to facilitate that progression, and can a slp do it? I am not competent to answer this, Judy. Some day I will be, and I expect that the answer for me will be yes, and yes. But right now I shall have to leave that answer to wiser and more experienced heads than mine -- like yours! I do think that for many the progression will happen more or less by itself, but not for all; and for still others, not as quickly and smoothly as it might do. And while clients ultimately have to make their own choices and find their own paths, it is sort of unconscionable to let someone misspend their energies without at least calling their attention to alternate, easier routes. Your abstract From: Lieven Grommen Date: 10/7/98 Time: 4:42:31 AM Remote Name: 220.127.116.11 Comments As a healthworker (General practionner) and PWS I was particulary impressed by your refreshing approach to the evolution of coping with stuttering by comparing it to the mourning proces as described by Kübbler-Ross. The model still works in all situations where real or supposed loss dominates. I think positioning a PWS on that scale will help directing the therapy. The PWS himself will gain much insight by the analogy. To me it was the most refreshing experience since I logged in on Stutt-L, and it finally made me understand a lot of past emotions. When at the end of the route fully integration happens to install, there will be often an important improvement of communication skills. Perhaps that perspective must be given to the PWS in the earliest stages of the proces. I am very grateful. Re: Your abstract From: LH Date: 10/7/98 Time: 10:26:33 PM Remote Name: 18.104.22.168 Comments Thank you, Lieven. Kubler-Ross' ideas on the process of facing adversity are a very powerful paradigm. This little think- piece is a first step to applying the idea to stuttering,and it can certainly bear a lot of refinement and testing. I do think, though, that having some idea of where you are going will help make the journey a little more bearable. Just wondering, in your work,do you encounter people with other kinds of chronic problems that might have an analogous progression through different stages of coping? Lou H. Re: Your abstract From: Lieven Grommen Date: 10/9/98 Time: 2:54:58 AM Remote Name: 22.214.171.124 Comments In general medicine the most evident mourning proces is the one after the loss of a loved person. Other conditions with the classical stages of grieving are cancer-diagnosis; chronic neurologic conditions like multiple sclerosis etc.. In fact each chronic disease demands your description of an elaborate mourning-labour. But very few people are able to pass till the final stage of integration; in my experience there is much fixation, first in denial later in aversion or aggression. Re: Your abstract From: LH Date: 10/9/98 Time: 11:13:55 AM Remote Name: 126.96.36.199 Comments Hello, Lieven. In the cases where people stick in these unhappy early stages, what do you and your colleagues usually do? Do you usually send people to counselors, or are there methods that speech therapists might employ to help people move on to a more productive place? L. Re: Your abstract From: Lieven Grommen Date: 10/10/98 Time: 11:46:55 AM Remote Name: 188.8.131.52 Comments Hello Louise, The keypoint imho. is the intelligence of the subject. ( Very inequal among humans). Second point: coping requires time. A healthcare-worker has to be very patient and repect the own mental and emotional rytm. Listening to him is very important. It can be the first time he is trying to verbalise his emotions. When people get really stuck in a mourning phase I habitually refer to a psycho-therapist to help accomplisch the proces. At this point the discussion about the kind of psychotherapy. Btw my wife just comes in and says: there is a kind of loss that never hurts: the loss of weight... when is a person "ready?" From: Michael Sugarman Date: 10/8/98 Time: 8:58:05 PM Remote Name: 184.108.40.206 Comments hello louise, thank you for your insight. Your description of how you and pws can process change is very important for the stuttering community. I believe its very important for consumers to realize that they can not just go to a therapist and expect change to happen to them. It is a process that one does for oneself. My question to you has to do with, when in the process do you believe a person is willing or ready to work on his or her stuttering and self? Re: when is a person "ready?" From: LH Date: 10/9/98 Time: 10:59:43 AM Remote Name: 220.127.116.11 Comments Hi, Michael. You ask, “When in the process do you believe a person is willing or ready to work on his or her stuttering and self?” That is an important question. I don’t really believe that working on the stuttering per se is going to be effective until the person has passed the stages of denial and aversion (or anger for people who’d like to stick closer to the classic mourning model.) I think that the reasoning here should be pretty transparent, as one cannot work effectively on something that one won’t acknowledge, or won’t face. A lot of the desensitization work that therapists do seems to be designed to move people through these stages to the point that they can at least resign themselves to the need to do some hard work. How to do that is certainly best left up to the individual and his or her therapist. The therapist’s job is to keep the person pointed in a good direction, and perhaps sometimes to put them through the uncomfortable process of working through these stages to a point that they are ready to take on the learning task that speech therapy really is. As Lieven said in his latest comment, people tend to stick in denial and aversion or anger when confronted with a loss or with other chronic conditions. There is no reason that stuttering should be different. Here too is where the “recovery” model kicks in, as for at least some of us no matter how accepting we are and how hard we work, the stuttering won’t really go away. In drug and alcohol recovery, people are taught that the job is never done, there are no cured addicts or alcoholics, only long-term recovering ones. One has to make a daily choice as to whether one is going to give into compulsion or not. Stuttering is not nearly so destructive as those two problems -- thank goodness! -- but still, one has to be prepared to refresh the speaking techniques, or to allow oneself to stutter some, or to do whatever else one must to first, keep equillibrium, and second, manage the speech. The really important thing is to know what you are doing and not rush headlong into the “mustn’t stutter!” panic. You know you’re on the way when a bad speech day is really no more an obstacle than a bad hair day. L. Stages of Coping From: Lynne Shields Date: 10/16/98 Time: 11:24:53 AM Remote Name: 18.104.22.168 Comments Louise, I was pleased to 'hear' from you via this conference. I read it early on in the conference and haven't had time to respond until now.Your piece is quite good--I have usedit several times in class discussions here lately. Thanks for putting it into words for us. I do have a question for you relating to the issue of "recycling" of stages. You do mention briefly the notion that someone may backslide to an earlier stage. Do you see this as a common event, from your perspective, in stuttering? I attended a short course given by Dave Luterman last year at ASHA. He suggested that it is important to remember that people may need to go through the grieving process more than once, particularly in the case of a disorder such as MS or Parkinson's, where there is degeneration of function. The person and their family will need to grieve all over again the losses as they occur. He saw too often the lack of consideration of this in treatment and in counseling with families. It occurs to me that one might see this happening for someone who stutters, since the speech is progressively worsening for the developmental period, for many. In addition, some people seem to experience significant setbacks regarding fluency. Regards, Lynne Re: Stages of Coping From: LH Date: 10/16/98 Time: 3:07:21 PM Remote Name: 22.214.171.124 Comments Hi, Lynne! I do owe you a private letter! It will be a long one when it comes. A lot of water has passed under my bridge since early last Spring. Thank you for your kind words. I am especially delighted that you have been able to use the article in your class discussions. That is gratifying indeed. Making things like that possible is one of the very good effects of this conference. Great! To the matter of “recycling” of stages, your observation is astute and important. I’m sure that you know that the more recent iterations of the concept of staged grieving involve the idea that people don’t just do it once, dust off their hands, and get on with things. Instead, most people more or less spiral through the grieving process with gradually diminishing intensity for a very long time. And certainly in the case of progressively degenerative diseases, the people who have them (and their families) often hardly have time to deal with one loss before they are faced with a new one, and a new grieving cycle. I do say in the article that it seems that a chronic stutterer is faced with a constant, if low-level, reinforcement of the sense of loss for several reasons. The cyclical nature of stuttering, and the impermanence of most treatments, rather set the person up for this. Certainly too, some people’s speech does deteriorate over a fairly lengthy time, although it seems to me from some not at all scientific sideline observation that most people reach a nadir during or before their late teens, and then even without treatment the stuttering levels off. Some lucky ones even begin to spontaneously regain some fluency. I ought to go look for some longitudinal studies of people who stutter and see if this is a correct observation. (Perhaps you or another reader can set me straight?) I am quite sure that a real setback in one’s speech could also set someone back in their progress towards coping. I am also sure that that such a setback will be much more devastating to someone who is in the earlier stages of coping than to someone in the later ones. In fact, one definition of successful coping with almost any condition is he ability to deal with setbacks without losing equillibrium. I need to restate that for the nonce I am limiting this paradigm to adult chronic stutterers. I simply haven’t observed enough children (and their parents) dealing with a long-term deterioration of their speech to do more than speculate. How might understanding the coping process impact on a child whose stutter is both developing and worsening? I know that you have worked with kids and parents a lot, and I’d like to have your thoughts on this. It does seem to me that the angriest and most aversive chronic stutterers are mostly young adults, who have spent the greater part of their lives watching their speech deteriorate, and often their hopes and self-respect along with it. It seems to me that if it is not possible to arrest the progress of the stuttering, it is incumbent on theinvolved adults to try to lessen the impact of these cycles of disappointment and their attendant grieving. That’s a big order, I know, but not impossible. I wish it were possible to put kids who are clearly at risk of becoming chronic stutterers, or whose stuttering seems to have settled in for the long term, into one-on-one contact with a fairly successful adult stutterer who can just be a friend and mentor. I’ve done that with a few kids on my own, and I know that that is an incredibly powerful tool to help the child realize that no matter how well or poorly they might be speaking on any given day, they will survive and even be able to make a pretty good life. Lou H. Bulimia and Stuttering From: Chuck Goldman Date: 10/17/98 Time: 4:56:24 PM Remote Name: 126.96.36.199 Comments I was mostly intrigued with the part of your learning journey that caused you to liken stuttering to abusive and compulsive disorders. A close family member who suffers from Bulimia has often sought out my help, perhaps, somewhat on a intuitional level. For her the symptoms that are in common include the chronicity of the problem, the shame, the hiding involved, the relative "normalcy" of the primary symptom, the difficulty in confronting the problem, and the belief at times that it can be hidden without enormous consequences. Re: Bulimia and Stuttering From: LH Date: 10/18/98 Time: 9:53:30 AM Remote Name: 188.8.131.52 Comments Hello, Chuck. I think the resemblance between the social and personal consequences of stuttering and the consequences of compulsive disorders is very important. I wish I knew enough about those conditions to really follow that line of inquiry. I do know that some people have speculated about a genesis for some of those disorders, particularly eating disorders, that is similar to the current stuttering theory that proposes an organic weakness or instability that is triggered by stress. I wonder if some of the counseling techniques that specialists in those disorders use are adaptable to working with stutters. Your experience certainly suggests that it can work the other way. Have you done any reading or research in this? You know, it seems to me that we fumbletongues may not be as unique as we'd like to think we are! Lou H. Stages of Coping From: Heidi Thorson Date: 10/18/98 Time: 2:37:30 PM Remote Name: 184.108.40.206 Comments First, I would like to comment that I truely enjoyed your article on both a professional and personal level. I am curious to know if there were any significant events or people that were especially helpful in getting from one stage of coping to another(or if progression occured as a result time or from soul searching, etc.). Re: Stages of Coping From: LH Date: 10/18/98 Time: 4:10:10 PM Remote Name: 220.127.116.11 Comments Hello, Heidi. Oh, my, your question does make me think! To answer you quickly, yes there were both events and individuals who helped to move me, and sometimes to propel me, into a new stage -- but not at every stage. I didn't want to get too deeply into those details in the article because I think that those encounters depend very much on the individual's own circumstances. I do describe a few of them in more detail in the supplementary and illustrative material on the back pages of the installation (the links). Although I think that most people will negotiate the stages of coping pretty much in the same order, the times in their lives when they do it, and the specific events that move them, are going to be highly idiosyncratic. My real purpose in presenting this article is to try to outline a large process that people can tailor to their own or their clients' lives without a lot of background noise from the details of mine. Early on in the process I had some encounters with stuttering and with stutterers that I just was not ready for. The seventh-grade classmate whom I mention in the article is a good example. Some of those encounters might have been very helpful if I had been less successful at avoiding the whole problem for so long, but I was able to walk by them with enough of a show of at least superficial dignity that I only recognize the lost opportunities in retrospect. I do wonder whether I would have come to terms with stuttering much sooner if I had come from a more open and accepting family, but such speculation belongs more to fiction than to analysis. It was largely the mellowness of middle age that made me sensitive both to what I had learned over my lifetime, and to what use I could make of that experience. Age is not the crucial factor though, so much as a kind of generous honesty with oneself that begins to resemble wisdom. I know people half my age and younger who cope with stuttering (and some with other disabilities) with enviable equanimity. I also know a couple embittered older persons whose anger at their stuttering seems to ooze from every pore in their bodies. The question of course is how to move a person (or oneself) through the negative stages into the more positive ones. I don't know how to do that. I am only just beginning to explore this whole idea myself. I wish very much that those who have been working with stutterers for years would chime in here with their observations! I do know that it can't happen by formula. All of the world's failed religions stand in testimony to that. I also know that having a wiser head around who knows where the path has to lead can help someone negotiate those difficult early passages before he or she becomes hopelessly lost. Although I did not benefit myself early on from anyone's proactive assistance, the generosity and kindness of a few people made immense difference to me later when I was ready to accept it. So, Heidi, I don't know if I have really answered your question or not, but I hope this helps. Lou H. Re: Stages of Coping From: Lynne Shields Date: 10/19/98 Time: 11:33:41 AM Remote Name: 18.104.22.168 Comments Hi Lou, Thanks for your comments, which, as always, get me thinking. You asked how having an understanding of the coping process might affect a child, in the developing stages of stuttering. That is a very good question. First, I would suggest that there may be other stages or prestages, if you will, in the coping sequence for children. There is the growing awareness of one's speech as being different and difficult, as something to be concerned about. I imagine that helping a child cope with their speech and reactions to it might lessen or change the process that follows the initial awareness, particularly in the case of a young child. If caught early enough the hope is that one can prevent both the stuttering from developing further, as well as to help them cope effectively with any negative emotion that occurs. My current mode of operation is to talk openly with children about the problems they are having with their speech. I also advise parents to be open with their children, taking their cues from the child as to what the child is feeling and what they want to talk about regarding their speech (or anything else, for that matter). The hiding and covering up seem so detrimental. At the very least, I work under the assumption that to let the child know that you are willing to talk, to make them aware that they can talk about their speech and their feelings, will give them a way to bring up issues as they arise, and perhaps assist them as they learn to cope with stuttering. I do not believe that it will prevent the process of coping, in cases where the stuttering continues to progress. But, my hope is that the child will be better equipped to deal with stuttering and perhaps move through to the more positive stages more rapidly. In your response to Heidi, you mentioned the use of a mentor, preferably a well-adapted adult who stutters. This is the best of all models, if it is possible, as it can give the child or adolescent a real model of someone who has worked through the stages, or is currently working through them, and who has done so successfully. I cannot say with any certainty that my being open with a child will help, of course. Nor do I have a better answer to your question regarding how to help a client move on to the later stages. I agree that there are no formulas for this. I am learning to be more aware of what a client is saying or demonstrating concerning their feelings, and to try to suggest other possible reactions or ways of coping. I am trying to make more positive options available to them, knowing that they will only take them up, or devise their own, when they are ready. I'm attempting to take the horse to water and hoping it'll catch on and get that drink! I'll be looking forward to hearing from you later on. I'm eager to know how you are managing school, work, etc. Quite a handful, though I'm sure you are doing well at it. Regards, Lynne Re: Stages of Coping From: LH Date: 10/20/98 Time: 7:26:17 AM Remote Name: 22.214.171.124 Comments Hi again, Lynne. You wrote: "You asked how having an understanding of the coping process might affect a child, in the developing stages of stuttering. That is a very good question. First, I would suggest that there may be other stages or prestages, if you will, in the coping sequence for children." You describe these a little, but could you provide more detail? When does a child seem to become aware of stuttering, and particularly, when in the process does the child seem to become aware that it is undesirable? Do those awarenesses usually coincide? Is it necessary for a child to be aware of stuttering as such before s/he becomes uncomfortable speaking, or can it happen the other way around? I like your emphasis on openness, particularly as I know from my own experience that covering up is certainly not helpful. Do you ever see kids who simply refuse to talk about stuttering? How about parents? I suppose that parents who take their kids to a speech clinic are a relatively cooperative subset of a larger group that necessarily includes parents who are themselves in some kind of denial or aversion, and who can't make themselves take an appropriate action. As a teacher, I have more than once encountered parents whose reaction to a child's fairly obvious learning problem is to say, "Whaddaya mean, MY kid has a problem! You're just a lousy teacher!" You can find "stage mothers" in every walk of life. But even among the parents you see, it could be that a parent is far more aversive than the child, and willingly or not, lets it show. Believe me, that is a hard thing for a kid (even a grown-up one) to deal with. How can you help a child understand that the parent's reaction is wrongheaded and even hurtful without treading into territory that can be very dangerous for anyone in a helping profession? "I cannot say with any certainty that my being open with a child will help, of course... I am trying to make more positive options available... I'm attempting to take the horse to water and hoping it'll catch on and get that drink!" Which of course is all that anyone can do, really. Lou H. Re: Stages of Coping From: Lynne Shields Date: 10/20/98 Time: 1:52:39 PM Remote Name: 126.96.36.199 Comments Lou, You wrote: "You describe these a little, but could you provide more detail? When does a child seem to become aware of stuttering, and particularly, when in the process does the child seem to become aware that it is undesirable? Do those awarenesses usually coincide? Is it necessary for a child to be aware of stuttering as such before s/he becomes uncomfortable speaking, or can it happen the other way around?" Good questions, all of them, and I'm not sure if I'm the one to answer them. In the children I've worked with--mind you, this is probably in the neighborhood of 10 children who were in the early stages of developing stuttering, a very small sample--I have only been able to guess at awareness based on the external behaviors I have seen. I assume that a child has at least some level of awareness when s/he show any signs of struggle, forcing words, muscle tension, and the like, or if they show any avoidance behaviors such as averting their eyes when they speak, or wincing or frowning when they are disfluent. As to whether the recognition of difference in speaking and a determination of undesirability coincide, that I can't say. I suspect that it will vary from case-to-case. To give you an example of the difficulty in determining this, one of my sister's has three sons. When the youngest was just three years old, she called me, alarmed about Phillip's speech, which had become so disfluent. She was concerned because his disfluencies were much more frequent compared to her other two boys at that age, and she was seeing struggle behavior developing not long after she noticed the repeated words beginning to occur. He forced words out, he averted his eyes, he gave a heavy sigh at times when trying to talk, or even told her that it was 'just too hard to say it' at times. He also began to show those signs of continued development--more part-word repetitions and beginning blocking. Now he obviously was quite aware of his speech difficulty. Did he decide that it was undesirable on his own? Or as a result of my sister's looks of concern when he struggled? I am not sure I can say. My sister said she tried not to react to it, or say anything to him about his speech, but, could she really keep the worried look out of her eyes? Or, did she only begin to react once Phillip had become so aware and began struggling to speak? I'm not sure whether we will ever know the answer to those questions. Phillip never developed further in stuttering. I don't know whether he was truly developing stuttering or whether he was just over-reacting to normal disfluencies. After this went on for some time, I gave my sister some suggestions regarding modifying her speech and and also suggested she talk with Phillip about his struggles when he indicated frustration. She had long-distance phone therapy, as it happened, after one in-person visit from me. Over the next 3 months, the disfluencies subsided, and he is a normally fluent child now, at the age of five. I think that the awareness, while different for each person, may often develop slowly, and that the feeling of it being a negative thing, can come from both the child's perceiving that speaking is no longer as easy as it used to be, and the reactions that s/he sees in others as they also become aware of the child's difficulties. I do think that when family members react very negatively, it is likely that the child will perceive their speech in a more negative way, too. So, I think you are correct when you suggest that parents may have more averse reactions than the child does, and this certainly can cause more problems for the child, particularly when the parent cannot be open with their child about it. I have had some children as well as parents who have difficulty admitting the full extent of their fears and concerns. There is a 13-year-old in our clinic at the moment, and he at first claimed that his stuttering did not really bother him. He is fairly fluent now, due to modifying his speech using a slow, easy mode. After a few sessions, he began to offer, on questioning, that he does not like to answer questions in class, and that he is bothered by his speech when he has the occasional block. The student clinician and I are planning on talking with him today about avoiding speaking--I suspect that he is fluent in part because he is still avoiding words and situations (even though he initially denied that this occurs). I don't think that these were addressed in his previous therapy. I use parent counseling time to address issues that may concern them, even if they do not recognize or admit it to themselves. Talking more in the general sense and working up to the personal situation seems to work fairly well in getting to the sensitive issues. But, as you suggest, there are cases where the child does have to deal with a less-than-positive reaction on the part of a parent/teacher/etc., and the best I can do in that situation is to talk with the child in terms of ways to respond to those who cannot deal with the stuttering. To help them learn to discern when a problem is theirs or another's may help to relieve some of the guilt and self-blame that surely occurs. Perhaps you have some thoughts on whether or not you think this may have been helpful in your own case, or for others with whom you have had contact. Well, it's time to get to clinic. Your article has provided much food for thought. Thanks, again, for taking the time to write it. Regards, Lynne Re: Stages of Coping From: LH Date: 10/22/98 Time: 6:54:58 AM Remote Name: 188.8.131.52 Comments Hello again, Lynne. I am going to have to keep this short as I have two midterms today. Back in the harness, I fear! >I have only been able to guess at awareness based on the external >behaviors I have seen... Is it common, or even effective to ask the child at those times what s/he thinks of what is happening? >Did he decide that it was undesirable on his own? Or as a result of my >sister's looks of concern when he struggled? I am not sure I can say. Oh, the subtlety! Your sister is fortunate that she had you to help her! >I have had some children as well as parents who have difficulty >admitting the full extent of their fears and concerns. Lynne, have you any suggestions for Kathleen, whose letter is just below this thread? >To help them learn to discern when a problem is theirs or another's >may help to relieve some of the guilt and self-blame that surely >occurs. Perhaps you have some thoughts on whether or not you think >this may have been helpful in your own case, or for others with >whom you have had contact. I think that is an important issue, and I know that some guidance in that direction would have been very good for me - and not just in the case of stuttering. That is still a very difficult concept for a child to grasp, though. Heck, adults have enough trouble with it! Which suggests that this is an issue that deserves more thought. I don't have answers, certainly. Lou H. Total denial From: Kathleen Roetzel Date: 10/21/98 Time: 8:21:34 PM Remote Name: 184.108.40.206 Comments I have found your article and the comments of the readers to be very interesting and insightful. I have worked with a fifth grade student in a public school setting who was in total denial. Because this child was emotionally fragile, I was concerned about being agressive in confronting him about his speech. His stuttering was very severe, and he had been stuttering for less then a year according to reports by his teacher and parents. Do you have any suggestions about the best way to approach a child and help him get beyond denial? Re: Total denial From: Date: 10/22/98 Time: 6:39:15 AM Remote Name: 220.127.116.11 Comments Dear Kathleen: Wow, you have a big job on your hands. You use the past tense a lot, are you still working with this child? There is no way to separate the problem of stuttering from other factors of the child's life, and it would be pretty foolhardy for me to offer any specific suggestions at this remove. You need to answer some questions for yourself, though. Does the child really understand what is happening to him? If not, what might be preventing that? Also, if the child's stuttering is both sudden and severe, I would wonder what else is going on in his life. Whatever seems to be the cause, I'd bet that you have a very frightened little boy on your hands. There are times when "doing something" can be counterproductive. Sometimes the best thing to do is simply to be there. As a classroom teacher I have twice had students whose stuttering, one very severe and one mild to moderate, was a source of great emotional turmoil to them. They were not so much in denial as scared to death of this thing that they did not understand and could not control. In both cases, I at first simply made myself available to them, in school or out. I let them know directly and by demonstration that I understood very well what they were going through. I made some allowances, at first without saying anything but as they became bolder and more confident with me, I began to explain in private to them why I was doing the things I was doing. I also found plenty of excuses to praise - something I really try to do with all my kids - and tried to sensitize the other teachers to the problems that stuttering can cause. It wasn't fast, but in time I gained both children's confidence enough that we could talk about stuttering and even laugh about it together a little. Can you get this child to express how he feels about stuttering, or for that matter about anything else that might be in the way of his facing the stuttering, through some other medium than speech? Acting out, role playing, art, story writing, music, are all ways for him to communicate with you about what he is really feeling. If you can show that you accept him and his feelings just as they are, you can probably wear down his resistance to whatever therapy you want him to try. Until you deal with the demons, the therapy will be just a waste of time. As he begins to trust you, you will be able to ease him into a deeper understanding of what is going on, and what he can do to take control. However, you won't get anywhere until he is good and ready. That can be frustrating, particularly if you have some kind of authority looking over your shoulder expecting results. When he is ready - and you'll know when that happens - you can introduce him to resources such as the childrens' section of the Stuttering Homepage, or perhaps one of the child-oriented self-help groups that are discussed elsewhere on this website if there are any in your area. Knowing that others share this problem, and knowing how they cope, will help ease the loneliness and embarrassment. I wish you both the best of success. I also wish that I could be more specifically helpful, but as with just about everything else concerning this slippery disorder, there really are no fast answers. LH Denial & Stages From: Lynne Shields Date: 10/22/98 Time: 10:41:12 AM Remote Name: 18.104.22.168 Comments Lou, Your response to Kathleen provided some quite useful guidelines for working with a child who is at a very vulnerable stage. You asked in response to me whether it was useful/common to ask a child what is happening to them when you see a reaction to a stuttered word. There is a videotape from SFA (Stuttering Foundation of America, for those not familiar) entitled "Therapy in Action: The School-Age Child Who Stutters". It is quite inexpensive, and therefore, very accessible! It has some nice footage of clinicians talking with younger children about their speech. Asking them, for example, 'what happened when you had that bumpy word'. If you have begun to establish a relationship with a child, I don't think they will find that terribly threatening. If they do, you get a response something like, 'I don't know' or 'Nothing'. Then you know they aren't yet ready to talk about it. I do recommend that videotape for clinicians who are working with school-aged stutterers. It can be a good resource for them, and also may be a tool to use in therapy with a child, especially if they are the only person who stutters that they know. I can see showing them the portions where children are shown stuttering and talking openly about it. We are running out of time to pursue this discussion in this forum. I've learned quite a bit from the articles I've had time to read. Good luck with your midterms, Lou. Regards, Lynne Re: Denial & Stages From: LH Date: 10/22/98 Time: 4:52:59 PM Remote Name: 22.214.171.124 Comments Lynne: Thank you for your comments, both the suggestion of how to tell if the child is ready to talk, and the suggestion of using videos to help open a child up. I'd forgotten about that resource. NSP has some too. There are other videos for people who are outside of the United States. CAPS has at least one, and so do a number of European stuttering associations. Lou H. Re: Total denial From: Kathleen Roetzel Date: 10/27/98 Time: 1:14:04 PM Remote Name: 126.96.36.199 Comments I know that it is past the date for this confrence, but I wanted to take the opportunity to thank you for your helpful response, even though it might be a while before you check this again. I no longer work with this child because he is in middle school, but I do know the clinician who does. I will pass this information along to the his current clinician and also the school psychologist. Thank you again, Kathleen Thank you all! From: Lou Heite Date: 10/22/98 Time: 4:57:01 PM Remote Name: 188.8.131.52 Comments I want to take this nearly-last opportunity to thank everyone who has responded to my essay on the ISAD page. Your comments are all intelligent and thoughtful, and you can be assured that I will be thinking about what you have said in these postings as I look for ways to refine and polish this idea. I also want to publicly thank Judy Kuster and Michael Sugarman for giving me the opportunity to participate in this first ISAD conference. Good work, people. You can sleep proud this weekend! Lou H.