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[first post missing]
Ken St. Louis
Dear Daniele,
Thank you for your insightful inquiry. I imagine that many people will have an opinion about your theory. All I will say that I have had the same experience as you. I don't stutter very much in English (my native language) but I stuttered a good bit in Turkish (my second language learned as a young adult). I generally attributed my increased stuttering in Turkish to my own need to try to talk as well in that language as I could in English (which was impossible). I then began to associate speaking Turkish with stuttering, consciously and unconsciously. Over the years, as I have systematically forgotten most of my conversational Turkish, the stuttering loomed even larger than it did when I was at my peak competence. But recently, I spoke at length with another person who stutters in Turkish. The conversational ability began to return, but surprisingly, I stuttered much less in that situation! Maybe my speech-language pathologist mode made the difference.
Whether or not different amounts of stuttering in different languages results from a neurophysiological difference in the way the new language (in your case, several new languages) is (are) processed, I don't know. Frankly, I suspect it is more complicated than all of this, given the multiplicity of ways languages can be learned, practiced, remembered, and used.
Indeed, this is a fascinating area--one that we can use lots of additional research. Thanks again for leading off with a great question.
Ken
From: Dale Williams
Danielle,
Good questions. I hope my responses will help.
If by external stimuli, you mean factors such as listener reactions and time pressure, I agree that these affect stuttering. In some cases, though, I think people stutter more in their 2nd language simply because they can't avoid as easily (e.g., it's harder to substitute words).
Keep in mind also that some people stutter *less* in their 2nd language. It could be that external factors play less of a role in their stuttering or it could be that the new language has fewer problem sounds. As an example of the latter point, I have trouble with stop sounds (p, b, t, d, g, k). When trying to learn German, I had an awful time with my fluency (all those ders & das's, etc.).
Hope I didn't further confuse the issue. Thanks for your questions.
Dale
From: Stefan Hoffmann, Beijing
I am a German stutterer, I learned 7 foreign languages (english, french, spanish, russian, latin, japanese, chinese). I speak NOW English and Chinese quite fluently, as I have reached a level of speech proficiency where I do not have to think too much of the words I want to say and can keep to the melody of the sentence once I got started. An other factor is self confidence, which I gained after being involved in the self help movement for 10 years now. However, there I met also people who stutter LESS in foreign languages, as they reportedly "become another person", "play another role" when talking "foreign".
From: Stefan Bogdanov
Besides my mother tongue, Bulgarian, I speak also English, German, Russian, French and Italian. I cannot say that I stutter more in the foreign language than in my mother tongue. Years ago, during my weekly phone contacts with my parents from Bulgaria, I expereinced much more blocks than in my daily speech here in Switzerland. My epxerience is, that stuttering has more to do with emotion, than with insuficient knowledge of a language.
Stefan
From: Andy Floyd
Hi everybody,
During my several years of schooling, attending ASHA and NSA conventions and from my personal experience I know the great importance of involving the parents in any therapy for children. Including my current position, 2 out of my last 3 jobs have been as a school-based SLP. I have had very little success involving parents. One example of my attempts was that I held a Stuttering Information Night and invited all my parents of kids who stutter (7) and two parents showed up. So, my question is what are some suggestions on how to involve parents - especially the ones who can't or won't ever come to the school?
thanks, Andy
From: Bob Quesal
Hi Andy:
Well, "can't" and "won't" are two different things. The parents who "can't" come to your stuttering night need to be contacted to see if there is a time when they CAN come. The parents who "won't" come may be more of a challenge. There can be any number of reasons why a parent would opt out of the "opportunity" to learn more about stuttering along with other parents of kids who stutter. The challenge, I think, is to try to find out what the barriers are (and these are likely to be different for each parent) and see if you can break those barriers down. Perhaps one-on-one would be better (less threatening) for the parents. That involves a much greater time investment on your part, of course. But perhaps if you can soften the parents up a bit, they will be more likely to attend group sessions in the future.
FWIW
Bob Q.
From: Steve Hood
Hi, Andy !! Yes, indeed. Family support is very important. You have asked a good question, and I am not sure I have a good answer. I do have some thoughts. And before giving them, let me just say that Bob makes a good point with respect to whether they cannot, or will not, attend. It might make a difference if these are parents of elementary, middle or high school kids. Maybe you could encourage the kids to really talk it up, and really encourage their parents to make it a priority. Another might idea might be to ask the parents, in advance, if there would be any days and/or times that would be better or worse then others...... For a long time I have maintained that one of the ADVANTAGES of working with kids in the schools is that you have access to the teachers and peers. A DISADVANTAGE is lack of access to the parents. In the university we have access to the parent(s), but not the teacher and peers. Sort of a trade off, because the parents, peers and teachers are all important for a unified thrust. Maybe you will get some additional replys.
From: Dale Williams
Just a quick follow-up to Steve's . I posed Andy's question to an SLP in a school notorious for low parent involvement (for anything). He reiterated Steve's points about taking advantage of access to teachers and peers, adding that this is so important that sometimes (not ideally, but sometimes) effective therapy can be done w/o regular parent involvement.
FWIW.
Dale
From: jerry johnson
how about the telephone, or better yet, if it really matters, a home visit. Or how about the kid and you writing an invitation to the parent at a time convenient, at night or a weekend. Yuk, do we work at those times? You bet, if it really matters.
From: Patti Bohlman
Andy, Sometimes you need to put a carrot in front of the parents noses as well as the kids. To get parent involvment, we often have to have an enticement to get them there. It can be there kids performing. It can be some type of raffle. Now, you might not get them to come to a specific "Stuttering Night". But could you piggy back it on some other night. We have Family Night where there is fun activities and food for parents and kids. You might want to do it on conference night. If there are emotional reasons for the parents not coming (like feeling it is their fault-or thinking that you will blame them) this might be less threatning. I actually hold a lot of parent conferences on family night-the parents don't really know that I am doing it. But I get to see the kids and parents interact together. We usually have these about once a month. Hope this helps
Why are the about DAF (delayed auditory feedback) devices so negative. The researchers in the USA and BELGIUM make it clear that those devices can give a good support to the stutterer. Why are there so many SLP's that doesn't want to know about it??? A device with therapeutic help can do a lot for those who are realy suffering about the stuttering problem.
From: Judy Kuster
As was explained in the introduction to Office Hours: The Prof is In (www.mankato.msus.edu/dept/comdis/isad4/papers/profin3.html), this feature of the online conference was not designed for an on-going discussion about a specific topic. Because of this constraint, the on-going discussion about DAF has been moved to its own threaded discussion area. Anyone interested in discussing DAF, please continue this discussion on http://www.mnsu.edu/comdis/cahn_mnsu_edu/dafdebate/
From: From: Gigi Hsueh
Hello,
I would like to know if anyone is aware of any fluency materials (e.g., fluency enhancing guidelines, therapy materials, etc.) that are available (either originals or translations) in Chinese.
Thanks,
Gigi
From: Judy Kuster
There is some material mentioned by Stefan Hoffmann on the conference. Check his entry at http://www.mankato.msus.edu/dept/comdis/isad4/papers/isad00report.html If you post your question to him there, he may see it and respond with more information.
Judy
From: Jack Beeksma
Greetings, and thank you for allowing us access to your expertise. My question is: Is there a connection between stuttering and epilepsy? I am a PWS, and have been so all my life. At the age of 16, I had an epileptic seizure and I've had approximately 3 per year over the next 30 or so years of my life. I noticed that, with the onset of the epilepsy my stuttering has become more pronounced. This leads me to wonder if the two (stuttering and epilepsy) are somehow connected. Your thoughts?
From: Ken St. Louis
Hi Jack,
You bring up a difficult subject: the extent to which stuttering might be related to seizures. Your own experience is important. In your case, there probably is a connection.
Yet, in the general population of stutterers, the link between epilepsy (or brain damage in general) and stuttering is not well documented. I did consult Bloodstein's HANDBOOK ON STUTTERING and noted a few early studies that showed a higher prevalence of stuttering among epileptic patients than the general population. There are numerous case study resports like yours in the literature which suggest a link. In the 1950s Robert West wrote about his "perseverative" theory of stuttering and in it he postulated that stuttering is a convulsive phenomenon. He highlighted the similarity of stuttering to a childhood seizure disorder known as "pyknolepsy," a disorder that begins from ages 4-10 years and is characterized by momentary seizures (not preceded by auras) that occur up to 100 times daily. Honestly, I don't think there is any solid data to support this theory.
We know that stuttering can occur in specific cases from verifiable damage to many parts of the brain. We also know that stuttering is conspicuously absent after damage to those same parts of the brain in most neurogenic patients. Where does that leave us? I don't know. Nevertheless, research on brain function and stuttering that is being carried out in various sites around the USA, Canada, and elsewhere may well lead us to better theories of how the brain functions or malfunctions during stuttering. Until then, we can only speculate.
Good question. It caused me to go back and look up some of my old library research.
Ken
From: Bob Quesal
Hello Jack:
I can't add much to what Ken St. Louis said. I will make one observation, however. I also have a seizure disorder and have wondered if my seizures and stuttering are both manifestations of some underlying neurological deficit. My seizures and stuttering don't seem to be related to each other in any immediately apparent way, but they do coexist (peacefully). ;-)>
FWIW
Bob Q.
From: Gunars K. Neiders
Dear Professors,
In dealing with a preteen stutterer (in this instance an eleven year old male) have any of you experienced any blowback, i.e. techniques that appear to be working in the short term but prove to have detrimental long term effects? Can you think of anything that might fall in this category?
Gunars
From: Steve Hood
Hello Gunnars.
Sorry not to have seen you in Boston last June for NSA. Maybe you can make it to NSA next year.
The term "blowback" is a totally new one for me. I've never heard of it. But I think I know what you are driving at. Here are two quick examples of things that might provide "short term fix" but not long term assistance.
1. Tricks, crutches, avoidances, postponements-- such as substituting easy words for hard one, or paraphrasing or talking around a topic. Relying on other to do the talking, refusing to talk and participate in class, etc. 2. Distractions that take his mind off stuttering such as talking in a sing-song pattern.
As Joe Sheehan (and others) used to say, be ware of "false fluency."
Therapy is more effective when geared more positively to doing more and more of the things needed to talk easily, and to communicate effectively, rather than doing more and more things to avoid or reduce stuttering.
At this age, we need to help kids realize that some stuttering is ok. Fluency is more than the absence of stuttering. It is the **severity** of the stuttering, and not just the frequency of the stuttering, that can be detrimental in the long run.
In anticipation of what you might post next, let me say that I do not believe the positive things that we can do to help these kids talk easily are in oppositional to the REBT,in which you believe so strongly. And when combined with work on the Feelings (emotions) and Attitudes (beliefs) about stuttering, these can be helpful in working with both the emotional and behavioral components of stuttering in this age group.
I wish that an interactive forum like this could lend itself to a verbal dialog rather than written series of posts, but such is not the nature of the format.
I hope these ideas are helpful.
From: Dale Williams
Gunars,
I agree with everything Steve wrote. When taking history info from a new client, I sometimes hear about techniques proposed in past therapy that backfired because they were nothing more than the tricks Steve mentions. For example, one child had a problem with the word �hello,� and was advised to think up new ways to answer the phone.
As I re-read your question, however, I wondered if maybe you were asking about legitimate techniques that backfired. I�ve had this happen. For example, I've worked with preteens on various speech techniques designed to build easier stutters. The problem occurs when the client is still unclear about the therapy objective and begins using a technique as a trick (i.e., a crutch or avoidance). Fortunately, this kind of thing is correctable.
Hope this answers your question.
Dale
From: Judy Bulter
Hello. Thanks for being here. Can someone talk to me about denial in stuttering? I think I am in denial about denial. :) I am sn SLP and I am a mother. In both those roles I have the authority, knowledge, and responsibility to reach out to children and encourage them to make the most of their lives. Any mother knows that there are times she insist that her child try out new experiences in order to grow up. Back to stuttering...people tell me I cannot help families/children/youth who do not want help, that I need to be aware of boundaries, that I must meet the client where he/she is, etc. So, I am with a mother this week who tells me her second grade son's stuttering is "just such a non-issue" these days. Have I done my job well with this family so that now she is accepting her son's stuttering? Or, is this a friendly way of telling me she is looking for another therapist?! :) Or, is she in denial about how the stuttering may be affecting her son now and in the future? And what about the parents who brings in their child who doesn't want to be there? I am tempted to design some kind of therapy that will engage children somehow...or should I just let them go until "they are ready?"
From: Woody Starkweather
Hi:
It can be difficult sometimes to distinguish between denial and acceptance. I think a person is in denial about their stuttering if the behaviors are clearly interfering with school participation or work efforts, but the person says "it doesn't bother me." But if the fluency level itself is high enough so that the person can function well, and they are asking questions in class, participating in discussions, hanging out with friends, than I would say that they are being accepting.
Also, denial in stuttering often takes the form of futurizing ("someday I will grow out of it" or "someday I will really work on it"). Minimalizing is another form, as in "it's not that bad." These statements need to be checked against the actuality of the stuttering severity to get a sense of whether they are denial or reality.
Woody
From: Scott Yaruss
Hi Judy - You've raised a good question, and I agree with Woody's response...
Perhaps the only thing I can add is that I always try to take a "long-term" view of stuttering and stuttering recovery...many times, when we're working with school-age kids, we feel an understandable need to help them NOW in order to prevent the development of negative reactions and minimize the negative impact stuttering may have on their lives in the future. As a parent myself, I understand exactly what you're saying about encouraging our kids, but not knowing exactly where the line is...
The problem with kids, of course, is that they don't typically see the "big picture" -- and parents, on the other hand, may ONLY see the big picture and miss out on the child's short-term successes...
SO, back to the long-term view, I feel it is NEVER too late for an individual to make progress with his or her speech or acceptance of stuttering. SO, even if you can't accomplish the goal you want now because the child seems to be accepting stuttering, that doesn't mean that there won't be an opportunity to do it later. If the child is okay with his speech -- if he is communicating in the real world, if stuttering has a minimal impact on the child's educational and social experiences, etc. -- then he is probably fine. Even better if the parent also feels this way...True, there is probably more that the child can learn to benefit his speech even further, and there may be a bit of denial going on about the real impact of the stuttering, but you'll have another chance to tackle that stuff in the future.
The way I see it, I'd rather not "overtherapize" a kid so that he gets bored and frustrated with therapy and closes the door to future progress...I want to help him accomplish the goals that he sees, even if they're not the goals he'll ultimately need to achieve, then help him along to the next step in the future, when he's ready.
Unfortunately "when he's ready" often means after the stuttering has had a negative impact, or the child has started to feel negatively about his speech. Just the same, though, you can't force a child to do something, particularly a teenager, if he or she doesn't see the value in doing it. That's where the negative impact becomes our ally, in that it provides the motivation the child needs. I wish we could do it sooner, but I haven't found a way to do that yet...
I'd look forward to any suggestions from my colleagues though -- this is one of the toughest issues -- we want to protect kids from feeling badly about their speech, but there's only so much we can do in advance...
FWIW, S
From: Woody Starkweather
Thanks Scott for that thoughtful response.
When I start to work with a young person and I sense that he really does not want to be in treatment, I terminate the treatment and explain that I feel that he doesn't want to be there. If that is correct, he stops seeing me, although it often isn't long before he is back, having seen the reality of things a little more clearly. The other possibility is that he sees the importance of therapy right then and there, in which case we can usually move forward.
Woody
From: Daniele Orla - Italy
I think that about stuttering everything is decided BEFORE the stutterer starts speaking. Before I make an utterance it is as if I KNEW and FELT that I'll be fluent or that I'll stammer. The sad point about this matter is that I hardly ever can do anything to make it change for the best!!! It sometimes happens to me (every now and then also in foreign languages) that I simply open my mouth and words just flow out smoothly and without any interruptions or repetitions whatsoever. I'm "just fluent". Is there any system to try to program one's brain in a way that this fluency can be somehow controlled and directed?
From: Ken St. Louis
Hello again Daniele,
I hope someone else has a comment on your question, but let me say that you have described a common experience of stutterers. Many especially introspective stutterers are aware that sometimes the brain machinery is in place and working well--and they know it. Other times, they are aware that things are not working well--and they can discriminate that as well. My guess is that the latter is what expectancy or anticipation is all about. Many have explained it in terms of anxiety (conscious or unconscious), such as Wendell Johnson and Oliver Bloodstein. But I am inclined to agree more with Kolk and Postma's views on reactions to normal repair functions.
I don't mean to be sarcastic or flippant, but I might suggest that the brain reprogramming you talk about could simply be discussed in terms of effective *learning*. Effectively learned strategies are--almost my definition--brain reprogrammings.
I'm not sure this helps, but thanks for the great discussion topics.
Ken
From: jerry johnson
Hi Daniele: I agree, you have expressed the classic anticipatory stuttering: "get ready, get set, stutter." You compound this problem by stating: "I hardly ever can do anything...." Also remember, there is no IT in this equation because the IT is YOU. If you say, "I tried it and it didn't work," you have given in to the Stuttering Beast. Sometimes with symptomatic modification techniques you have to consciously decide whether you wish to stutter or to modify your stuttering and to start out modifying the very first word you speak, whether you think you might stutter on it or not and then proceed to the rest of the sentence. Van Riper once said, "speech starts with a capital and ends with a period." Often times PWS go from word to word, from stuttered word to stuttered word, without movement from start to finish. I would recommend jump starting your therapy in easy situations first and saturate yourself with your "techniques" whether you stutter or not. Gain self-confidence and then move on. Now then: maybe you are becoming so negative and bound up in "beating yourself up" that you find it hard to move beyond all this negative emotion. You might find my paper "Ten Commandments For Long-Term Maintenance of Acceptable Self-Help Skills For Persons Who Are Hard-Core Stutterers" helpful. This can be found in Judy Kuster's great website. Best wishes.
From: jerry johnson
Daniele: for the Ten Commandments go to www.stutteringhomepage.com and then to Gerald Johnson Library. You will find it there. Hunt and peck and you will find it OK. Best to you.
From: Rafal Karwowski from Poland
I agree with You that stutterers are afraid of stuttering before they start to talk and this is very hard to over come! I can tell You that I did it! I'm taking part on Mrs. Eva Galewska's therapy and She learnt me how win with my fear. It isn't easy, truly it is very taft proccess but I can assure You that everyone who took part on this therapy is not afraid to speak anymore. Now I can speak freely, I can buy anything, I can talk to the strangers, I finally can live... This is only one of many units on this therapy. Everyone after it can speak fluently and without fearness. So it is possible to learn how win with Your fearness and stuttering - but it is very complicated process - not just like "swallow the pill".
From: Gunars K. Neiders
Dear Professors,
A friend of our family has an eleven year old boy with severe stutter to the extent that he is starting to skip school when he has to give oral reports. There do not appear to be any competent stuttering therapists in his area.
After reading the ISAD4 paper "Directed Self-Help Stuttering Therapy With A Motivated Teenage Boy, Predominantly By Email by Gerald Johnson and Eric, I came up with a bright :-) or maybe not so bright :-) idea:
What do you think of having this boy treated in an intensive three week program and have a long distance, long duration follow up therapy either via e-mail or telephone?
What is the probability of this type of program working for him? What outcome is reasonable to expect?
And, most importantly, do you know any individual or organization that would be willing to provide this type of service? I would also appreciate any other pertinent details OR an e-mail address/website where more information could be obtained.
Gunars
From: Ken St. Louis
Hi Gunars, Deborah Kully and Marilyn Langevin from Edmonton, Alberta presented a wonderful paper at the Special Interest Division 4 meeting in Toronto in May, 2001 on distance therapy. Perhaps Deborah will weigh in here and offer some of her insights.
Ken
From: Deborah Kully
Hello Gunars,
I apologize for the long delay in responding to your message. As Ken St. Louis indicated, we here at ISTAR have been involved in delivering therapy at a distance for some time, both through the use of interactive audio-video links (room-based telehealth systems) and through the telephone. This has been a necessity for us because many of the people who attend our intensive clinics come from distant places in North America and overseas, and because we often receive requests from people who live in very remote areas. We have used the telephone only for follow-up maintenance therapy and interactive A-V for both the initial therapy and follow-up (but only in selected cases where the technology appeared to be a good match for the case). Although we have not completed a controlled study to compare the effectiveness of distant vs face-to-face therapy, our impressions are that results are comparable in most cases.
In response to your question about whether any organization would be willing to provide intensive therapy with distant follow-up, I can tell you that we would certainly be willing to do so providing that the boy himself wants formal help. If you are interested, I would be happy to send you an information packet that you can pass on to the family. I would also be happy to send you a reprint of an article about telehealth applications to stuttering therapy (Telehealth in speech pathology: applications to the treatment of stuttering, Journal of Telemedicine and Telecare, Vol 6 Supp 2, 2000).
Please feel free to email me directly at deborah.kully@ualberta.ca or refer to website http://www.ualberta.ca/~istar/.
From: jerry johnson
Hi Gunars: As you know I think email can be very powerful. My question is, why a three week therapy? A skilled clinician can understand the needs of a person after one meeting. The rest of the treatment is for the child and his caregivers to buy into the program. Email can be far reaching and need not only be for the child. It can include teachers and others of importance. Maybe we overestimate the importance of "intensive" symptomatic modification to the exclusion of fluency enhancement and what is right about the kid. I do believe that personal contact is always beneficial, but in some cases maybe it is not possible, especially for three weeks. Email does tax the competence of the clinician and time is also a factor, but if it is all that is possible it is better to give it a try.
From: Gunars K. Neiders
Jerry, You may well be right that the "three week intensive" may not be necessary. Gunars
From: jerry johnson
Hi Gunars: As you know I think email can be very powerful. My question is, why a three week therapy? A skilled clinician can understand the needs of a person after one meeting. The rest of the treatment is for the child and his caregivers to buy into the program. Email can be far reaching and need not only be for the child. It can include teachers and others of importance. Maybe we overestimate the importance of "intensive" symptomatic modification to the exclusion of fluency enhancement and what is right about the kid. I do believe that personal contact is always beneficial, but in some cases maybe it is not possible, especially for three weeks. Email does tax the competence of the clinician and time is also a factor, but if it is all that is possible it is better to give it a try.
From: Joseph LUKONG, Cameroon, Africa
I am from Cameroon, Africa. I do not have access to web pages so Judy Kuster is forwarding answers back to me by email.
How can one explain the causes of stuttering? Is it hereditary. Let me tell you my personal history which makes me to believe that it is hereditary. My father is a polygamist having three wives. My mother is the first of his wives and has six children. Of these children all of us the four boys are stutterers and the two girls are not. My father's second wife has 8 children-3 girls and 5 boys. Four of the five boys are stutterers and 2 of the three girls are stutterers. My father's 3rd wife has 7 children- 4 boys and three boys . All the boys are stutterers and only one of those girls is a stutterer. From all This can we say that stuttering in our family is hereditary?. Neither my father nor any of his wives is a stutterer. What can be the cause of this? Why is it that nearly all the boys are stutterers? How can one explain that?
From: Ken St. Louis
Dear Joseph,
Thank you so much for your question. I am sure it is puzzling why so many of your siblings stutter when your parents do not. That certainly would make you wonder if the cause were genetic or environmental.
Given your family history of stuttering, from a scientific perspective, I think you have answered your question, "Is stuttering hereditary?" about as convincingly as any data I have seen. Of course, there clearly could be environmental influences, possibly related to speech pressure and family or societal standards for speech fluency, but most of the good research points clearly to a strong genetic link in most cases of stuttering. Your family is a strong example of this. Of the 21 siblings or half-siblings, 2/3 (67%) stutter, 85% of the boys and 38% of the girls. (On the average about 3-4 times as many boys as girls stutter.) The common genetic link, of course, is your father. I would be curious if there is any stuttering (or the somewhat related condition of cluttering) in his parents, grandparents, great-grandparents, brothers, sisters, or their children.
Your family could become an important case study to report in the literature on stuttering. If you are interested, I am sure that a number of scientists would be very anxious to carry out a study of your family history. If you wish to pursue this, feel free to contact me at kstlouis@wvu.edu. I will try to help you gather systematic information with the help of other scientists who are carrying out genetic research.
Thanks again for your question. I hope my might provide some insight.
Ken
From: Dennis Drayna, PhD National Institute on Deafness and Other Communication Disorders
Dear Joseph,
There is a great deal of evidence supporting the view that at least some stuttering is hereditary. This evidence consists of studies of twins, studies of adopted children, and studies of families such as yours, in which a large number of family members are affected with stuttering. In addition, several new studies have gone a step further, and have produced evidence for the location of specific genes that appear to be at work in some of these instances. We have recently completed such a study here at the National Institutes of Health in Bethesda, Maryland, and have strong evidence for the location of one such gene. We are interested in studying other families with a distinctive pattern of stuttering. Your family would be of great interest to us. If you and other family members are interested in participating in our research study, please contact us by e-mail at: drayna@nidcd.nih.gov , or by mail at: NIDCD, 5 Research Court, Room 2B-46, Rockville, MD 20850 USA. Thank you for your interest in the genetics of stuttering.
From: Joseph LUKONG, Cameroon, Africa
I am from Cameroon, Africa. I do not have access to web pages so Judy Kuster is forwarding answers back to me by email.
In countries like ours there are no therapist and other specialists. Do you think that if we met therapists our case might have been different? What are some of those ways that you use as measures of control over speaking situations?
From: Judy Kuster
Joe,
You are already doing a lot of important things for yourself and your country, even if there are no professionals who work with people who stutter there at this time.
You are already in contact with the International Stuttering Association, which is an organization of PWS that connects the self- help network around the world. Stefan has told you about it already.
There is also an organization in South Africa for People Who Stutter. It is called Speak Easy of South Africa. Jonathan Leming is the leader of this organization. His email address is quagga@global.co.za You should get in touch with him about what resources he may know about in other parts of Africa. The self-help movement is a very important support system for people who stutter. You and your new organization can help make an important difference for people who stutter in Cameroon.
Also, there are speech therapists in South Africa that I know. Two of them have written papers for this conference. I will email the papers to you.
The other important work you can do right now is learn all you can about stuttering. I will send you CDs of the first two online conferences. One of the papers on the first conference was written by a woman who is a speech therapist. It is about Stuttering in Africa. I think you will enjoy that article. I will also mail you some materials from the Stuttering Foundation of America (Self-therapy For the Stutterer, Sometimes I just Stutter: a book for children between the ages of 7 and 12, and Advice to Those Who Stutter) and also a book, To Say What is Ours, from the National Stuttering Association, which is the self-help organization in the US, These materials will be a good place for you and your organization to learn more about stuttering.
Perhaps others have additional ideas.
Judy
From: jerry johnson
Hi: try to get the email addresses from professional people you respect and attempt to have email "therapy" with them. You can learn much by using the email process. Good luck. Or maybe the experts will give you their email addresses so you can get some help. Email can be a very powerful tool and especially when you feel alone and with no one close by. drgfj@aol.com
From: Tom Klassen
It is relatively easy to decrease stuttering behavior in clients during therapy, especially intesice therapy.
However, the maintenance of more fluent speech is a challenge for many people who stutter.
In your experience, what causes fluency skills to decline and what can be done to prevent or minimize this process. Specifically, is the decline in fluency primarily related to: 1) the nature of stuttering itself, 2) the nature of the social environment (the importance attached to fluency in communication), 3) the type of therapy, 4) individual characteristics of people who stutter (age, etc.), 5) other factors.
Thanks and cheers, Tom Klassen
From: Bob Quesal
Great Question, Tom!
I'll try and answer point by point:
You asked: Specifically, is the decline in fluency primarily related to: 1) the nature of stuttering itself, I'd say it's more the nature of behavior itself. Most folks who have had therapy have been stuttering for some period of time. I think that it is very difficult to totally extinguish the "old" behavior - the one that was learned first - so it is likely to begin to re-emerge after the focus on new skills that takes place in therapy is no longer prominent.
2) the nature of the social environment (the importance attached to fluency in communication) In spite of therapy and no matter how good that therapy is, fluency is still going to vary. Often, social environment contributes to this variability. But difficulty speaking in situations in which one is trying to make a good impression doesn't differ all that much between people who stutter and those who don't.
3) the type of therapy I guess some therapies might be more prone to relapse than others, but it's usually the "match" between the treatment and the person receiving the treatment. If you do the right therapy for the client, I believe that relapse is less likely (although not totally out of the question). If there is a mismatch (trying to teach acceptance to someone who wants fluency and nothing else, for example) therapy is less likely to be successful (over both the short and long-term).
4) individual characteristics of people who stutter (age, etc.) This ties in with my answer above, to some extent. We know that early therapy generally has better success (less relapse) than therapy begun after a child has been stuttering for some time. However, regardless of age, the "mismatch" idea applies to therapies and people. One of the real challenges, in my opinion, is determining the "best" treatment for a particular client. I'll also point out, however, that sometimes the client doesn't realize the treatment that is best. I worked with a fellow who wasn't all that disfluent, but when I asked him to be more open about his stuttering ,he acted like I was crazy. After a few semesters of off-and-on therapy, he had an experience (taking a public speaking class) in which he finally realized that being open about his speech and stuttering was a good thing. He is now a school teacher.
5) other factors. There are always going to be "individual differences" that perhaps cannot be predicted. Sometimes we do our best therapy and there is still relapse. If we knew exactly why it occurred, we could bottle the recipe and become rich. ;-)>
Thanks for a great question. I feel good that I was finally able to beat Ken St. Louis to an answer! ;-)>
Bob Q.
From: Woody Starkweather
Bob gave a really thoughtful answer to the question, and there really isn't too much to add to it. But perhaps one more idea is also useful. It seems to me that many times relapse occurs because therapists have not fully dealt with the emotional aspects of the disorder. The feelings that stuttering can produce often survive the behavioral treatment. Then they are "seeds" that can grow into the disorder again. Certainly this happens with fear. A person who has learned to speak without stuttering is still afraid he might stutter when he finds himself in a situation that has always evoked stuttering in the past. The fear increases muscular tension, a tendency to avoid, and we're off to the races. Also, therapies that are aimed primarily at increasing fluency are likely, if not carefully executed, to INCREASE fear because of the premium they place on not stuttering. So, the very things that make the person sound better make them more likely to fear stuttering, turning them, essentially, into covert stutterers.
Other feelings associated with stuttering can also survive simplistic behavioral treatment. AS the person re-experiences these feelings, the tendency for stuttering to re-occur is still present.
Woody
From: Dale Williams
Tom, you raise a very important issue. I’ve always thought cueing was important to the transfer/maintenance problems common to stuttering therapy. For a given individual who stutters, there are cues, e.g., situations, emotions, the social factors you mention, and others - that trigger stuttering. Conversely, speech is relatively easy in a treatment environment where the only cues there are represent past success, encouragement, and lack of communicative pressure (this is particularly true if treatment consists of fluency-enhancing techniques like stretched phonemes or easy onset in short syllables). However, once the client leaves this safe environment and faces real life (with many times more cues of past failures), implementation of skills learned in therapy will be far more difficult. As has been implied in other responses, facing these cues of past failure armed only with speech techniques is a losing battle. Therapy must address the cues themselves.
Dale
From: Deborah Kully
Tom:
I hope it is not too late to comment on this interesting exchange. I appreciate and agree with Bob, Dale and Woody's thoughtful . When we consider the nature of stuttering and the challenges of sustaining any kind of life or behavioral change, be it losing weight, quiting smoking or even developing a healthy lifestyle, it is not surprising that lapses and relapses can occur. I believe it is important for change to be viewed as a process with ups and downs where lapses are a natural part of the change process. A lapse may or may not result in a relapse depending on how the individual responds to the experience. By using the lapse as a learning experience, people may avoid making the self-defeating attributions that can lead to complete relapse. Of course, there are other contributors to relapse as well, but I do believe that the expectations developed through the treatment process are important to consider.
I also would like to mention an interesting paper by Craig and Hancock that investigated self-reported factors related to relapse. According to their survey of 152 treated adults, relapse was most likely to occur in demanding contexts such as the workplace; least likely to occur at home; more likely in the presence of authority figures, colleagues or strangers, and; more likely to be associated with demanding tasks like interviews and talking on the phone. Relapse appeared to occur in cycles with an average of 3 per year. Although 70% of respondents reported experiencing relapse, the majority believed they subsequently regained fluency.
This is such an important topic. Thank you to all for your insightful !
From: Jim Clarkson. Australia
Dear Professors
My question could be considered of a personal and general interest nature, as I do not usually readily give advice on speech matters to others,
There are four adult stutterers in a friendly social activity group. One has continuous blocks and shows some struggle behavior. Another has many stutters and shows no struggle behavior. The next has many stutters and some blocks, but only shows struggle when blocking. The last has severe whole word repetitions and shows a large struggle.
If they were all in a post therapy stage, which ones if any would you tend to prefer to use in their maintenance program, a regular practice of voluntary stuttering or desensitization as it is more commonly known. Or would you recommend it as a less frequent use as an identifier of stuttering only. My attitude to this could have become somewhat old fashioned.
Looking forward to your answers. Jim Clarkson. p.w.s.
From: Woody Starkweather
Hi Everyone:
My answer to this is that they should not be in a "post therapy phase" if they are still stuttering so badly, and most of them with struggle behavior. How can therapy have been terminated if there is still struggle?
Woody
From: Jim Clarkson
To Woody Starkweather
Thank you very much for the reply. You have caught me very of guard, as I thought your reply would be somewhat different. And of course you are right.
I am actually the third person and I should have said I have some stutters and some blocks, but only struggle on the blocks. If I were to remain in the group all of us would have to find someway to get the person with the whole word repetitions back into therapy, otherwise I would leave. Of the other three, since therapy we have shown big improvements in our fluency and lives. And although not perfect. In reality because of our location, bureaucracy (funding) etc, we may now have to stand on our own two feet. The second person is what I term as a happy go lucky stutterer who even with very good therapy does not change much. The first person who has blocks and very few stutters if any, is happy but not exactly go lucky. For him practicing repetitions (stutters) I feel he may end up with more problems and could be better staying with something like pullouts. The third person who has some stutters and blocks, hardly even notices his few stutters but is relatively unhappy with his blocks as he only has some control of their occurrence.
The happy go lucky stutterer thinks that the person with some stutters and blocks, is hiding something. And believes that to become more like him the person with some stutterers and blocks should practice some more stuttering. As I think the difference between these two conditions is as alike as chalk and cheese, and although the happy go lucky stutterer may have good intentions. I think he should mind his own business.
These persons are partly fictious but observed from a group over many years that sometimes numbered at times up to eight. I have not been part of the group for sometime now but still have many good friends. I know I am making a stand here, but I really feel for the stutterers like myself, and do think they should have the very best help and advice available to them. You may note that I am not only referring to Australia but what appears to be a general trend.
I hope you don’t think I am too much of an old stuffed shirt as I am always open to improvements and advice. I would also like to add that I have gained an unbelievable benefit from taking part in this online conference and thank everyone involved.
Jim.
From: Woody Starkweather
Hi:
I guess what is clear from your post is that stutterers are very different from one another. When they are in a group, they need to keep talking to each other to further understand the differences between them. If they can go on to become more accepting of these differences, all the better.
Woody
From: jerry johnson
Hi Tom: the answer is simple: "make your therapy your life style!" This includes building your ego power and all that that involves. Lastly, don't worry about "fluent speech" because you probably already have alot of it. Strengthen your approach to speaking and weaken your avoidance of it (ah, where is Joe Sheehan when you need him?). Simplify your therapy life style and concentrate on what almost always "works" for you. Remember, there is no IT in this process, because the IT is YOU. If you say, "I tried it and it didn't work" what you are saying is "I did not put forth the skill strongly enough for it to work." Lastly, there is no magic is beating the Stuttering Beast.
From: Viren Gandhi
You Never Had A Problem !!!
I am Male 31 PWS from Mumbai, India. I have avoided many things till date including using phone. Though as one grows up, family including Brother / Sisters should become aware of problems which PWS faces in his day to day life. But somehow, they do not always notice. And PWS often hides by inventing hundred of tricks. I remember one of my late friend, who when used to have a Drink (Alcohol), would say so when he would go home. So his all family were aware of it. But seldom such things ever happen with respect to Person's stuttering in his/her family.
Who is to blame for that ?
PWS , who though is Adult and supposed to realize, fail to realize it. And then some day it comes to him as Shock Treatment. His family has some or other problem with his ways , which he invented because of stuttering. Stuttering , off course , ruled his life. He/She lives in denial.
Marty has often used word "Neurotic". I when has to buy Medicines from Shop, would be unable to buy by saying so would note down on Paper and then go. I would tell people in my family that I forget Names so I note down. But in reality, we have a memory so sharp that we would never forget it. Every PWS has Hundreds of such examples to give.
His/Her Family Doctor didn't guide him to competent speech therapist or may be therapy was too expensive or there was no competent speech therapist available. This could be common problem in Third World Countries. There might be help available in Major Cities but what about Interiors?
And life of PWS goes on. He has resigned to his fate. He may not even have even any desire to improve. Then somehow he realizes he HAS to improve. His life is going off track. And then he feels each day, he counts each incident, that he was doing wrong because of his life-long problem with stuttering. He starts gaining more knowledge and wants somehow to improve his life and speech.
His family or outside world, still has same perception of him. They still do not grasp Emotional or Psychological Aspect of Stuttering. And situation has often come to such level, where damages done are beyond repair. ( I had learned more about Emotional Aspect of Stuttering from Internet and Listserve/Mailing List in last 6 months then I might would have learned in my whole life).
Unlike Western countries, social customs in country like India are too rigid. Obedience to Parents, Relatives etc. does play important role. There are expectations from PWS , which he fails to fulfill.
He may try. He may make advances.
And then all those, surrounding him would say
"You Never Had A Problem !!!! "
I would urge SLP and PWS community to prepare papers to deal with this aspect in coming years. In clear terms, describe or emphasis , that PWS , when he tries to improves, he is trying Hard. It's really stressful for him. It was never easy for him. There are lapses.
I know and have read plenty of mails, in which, PWSs and SLPs openly acknowledge that they are aware of struggle, which PWS undergoes. Same level of understanding should come in Family/Friends/Relatives of PWS, with whom he has to spend greater amount of time in his life. That can certainly make his/her life much more better.
Sometime back I made one of my Friend read some Article from Stutteringhomepage about Psychological aspect of stuttering. Article talked of Depression, fear etc. and had quotes from Van Riper. My friend, though is a school friend of mine, was shocked , cause we have been together a lot still he never understood this all can happen to me.
When exploring Stutteringhomepage, I have come across many articles / Web Pages on Advice for Parents, School Teacher and so on. Is there a page devoted to Advice for Family/Brother/Sister's of PWS , who are Adult and 20- 30 or more old ? All Stuttering Related Site call those PWS as Hard Core Adult Stutterer. Adult Stutterer are also more hard pressed as they have more responsibility on their shoulders. Today's competitive nature in Word makes then more vulnerable. In many cultures, family ties are so strong that lack of understanding by people in your family puts PWS in very odd situation.
Sorry I couldn't Keep it shorter than this.
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Ken St. Louis
Dear Viren,
You have articulated the pain of so many who suffer from the mysterious condition we call stuttering. Aside from all of the negative aspects involved in speaking, people who stutter suffer from misunderstanding from their families, friends, and societies. Of course, we rarely want others to treat us as "verbal cripples." But we don't want them to treat us as if there is absolutely nothing wrong with us either. The middle ground is informed understanding. Societies have a long way to go before stuttering, as Bob Kroll has said, is considered just as a normal part of the human condition.
Together with a growing number of wonderful scientists, stutterers, and others, I have been involved in developing an public opinion survey that hopefully can be used to measure and track public attitudes toward stuttering. The project is called the "International Project on Attitudes Toward Stuttering." We hope that this survey might be able to assist those who are trying to change public attitudes to discover which strategies are most and least effective.
We have a long way to go before we have a survey that can be translated (and back translated) to assess public attitudes. And even when it is finished, it will not be of much help to individual stuttering people like you.
My suggestion is to keep doing what you did with your friend. Take upon yourself the task of educating others about stuttering, using all of the resources that are now available. Consider telling your story as well to whomever will listen. (Maybe you have seen the paper in this conference by Judy Kuster, Rae Jean Sielen, and me. It deals with the value of telling your story.)
Thanks for sharing your story with those who visit this on line conference.
With my best wishes,
Ken
From: ORLA Daniel - Via Isolabella 18/28 - 10046 POIRINO (TO) - ITALY
When speaking fluently I am aware - some words before I stutter - that on a certain word ahead I will stutter. It is as if the power at a given moment were cut off and the speech flow continued for a certain time out of sort of an inertial force, till it stops. I see the block getting nearer and nearer, and I know that I can't do anything to dissolve it...
What d'you think about that? - Bye, Daniel.
From: Dale Williams
I’ve experienced this too. I actually have a mental image of an utterance (before I say it) and see stuttering within it. I’ve talked about this with a number of clients who report similar thoughts. It’s as if the stutter is there and isn’t going to go away. In therapy, there is a bright side to this. While the stutter is part of the utterance, it can be moved around within the utterance. For example, if a client has learned easy prolongations, but now has to say �My name is Dave� (where the feared word is his name and the 1st sound can’t be prolonged), he can move the easy stutter to another word and thus not have to experience a tense and unmanageable stutter on his name.
Dale
From: Bobby Childers
Tonight in my graduate Business Law Class, I had to ask the professor a question about a paper we are required to write. I talked with her before class started and had a very difficult time trying to talk without severe stuttering. What should have taken about 2-3 minutes took almost 10 minutes. She told me that I had asked a valid question, and would bring it up to the entire class.
When class started, the professor said that she had been asked a question about the upcoming paper, and was going to answer it for the entire class. She then asked me if I wanted to ask the question again, or did I want her to do it for me.
I mumbled something about trying it again, and proceeded to talk for 10 minutes without stuttering once. The entire class (35 people) got involved and a discussion soon evolved of which I was the center point.
My question is: why did I have problems talking to the professor in a one on one basis, and none talking to the entire class of students? Normally I would have less trouble talking with the professor and mucho problems talking to the class.
I know that the subject of fear has come up on this online conference, and I wondered if I was possibly "afraid" to talk with the prof, but not "afraid" to talk to the entire class. If this is true, then I have gone against my entire grain because I usually do the exact opposite.
Any suggestions or as to what occurred in my psyche tonight?
Thanks
Bobby
From: Steve Hood
Hello, Bobby
Clinicians sometimes think they should "know all the answers." I think it is better that clinicians try to ask the kinds of questions that might help the PWS determine for himself some of the things that might be going on. So with this in mind, let me ask you some questions and see if this helps clarify your line of thinking. These questions might help you to clarify possible factors in general, and differentiate between the two different experiences you had.
1. Were there differences in what you anticipated would be the reaction from the instructor? The first time, you may have been uncertain as to whether she would or would not think you had a valid point. You may have been worried she would react negatively to your question, and may not have thought that your question was valid. By the time you spoke in class, you by then knew she reacted positively to your question... and that you had raised a valid point.
2. Were there differences in your perception of time-pressure? Before class, you might have been rushed to finish what you were saying prior to class. But talking in class, you had the floor, and presumably more time, since the instructor brought up the topic.
3. Even though the entire class was a large group of 35, did you feel like you were the "authority person" --- since the instructor deferred to you, and asked you if you would like to bring up the question you had?
4. Since you had already brought up the topic and explained it to the teacher, did this serve at all as a "practice run" that might in a partial way have prepared you for talking about it a second time, to the class?
5. Does it make a difference to you, whether or not you get off to a good start? With the instructor the first time, you got off to a bad start, and your stuttering went down hill from there. In class, you apparently got off to a good start, and your fluency increased from there.
These ideas may make some sense, or they may make absolutely not difference at all. It would be better if we discussed these in person, so that I could branch out with questions and probes based on your replies..... This is not possible in this written forum.
Let me close by saying that one of the frustrating things about stuttering is that even though you can make predictions (e.g., you thought it would be easier to talk with the prof as compared to the 35 class members) -- sometimes, your predictions prove to be incorrect. There are times when you would predict frequent and severe stuttering and you have little or none, and times then it is just the opposite. This is one of the paradoxes of stuttering.
Maybe others will reply with questions and further .
From: Gunars K. Neiders
When starting therapy with a preteen age boy (11 years old) should the criteria for successful therapy be established?
What should both the objective and subjective criteria be?
Can we use Yaruss/Quesal instrument for this purpose?
What happened with the process of developing an instrument that was started in SID4 Leadership Conference a few years ago? Is Eugene Cooper's version of this the only one around? Can it be used to establish when the successful therapy process be terminated?
Has the Lidcombe group in Australia come up with an instrument that could be used for this purpose?
Answers to any of these questions would be highly appreciated.
Gunars
p.s. I surely hope that the only criteria for termination is not defined as when the clients' money runs out! :-) :-)
From: J. Scott Yaruss
HI Gunars Thanks for the post...I'm afraid I haven't been pulling my weight on this list, but I've sure been enjoying everybody else's responses... Since my name was mentioned in your post, I thought I'd take a stab at it ;-)
For me, the ultimate goal of therapy for a school-age child, adolescent, or adult, is that the person will be able to do what needs to be done to manage communication effectively...This will be different for each person -- for some people, this will mean the ability to monitor speaking situations and use techniques learned in treatment to reduce stuttering on a situation-by-situation basis; for others, it will mean maintaining acceptance of stuttering, handling teasing, or focusing on improving overall communication attitudes on an ongoing basis. The goal is for the client to "become his own therapist," determining not only what he needs at a given point in time, but also how to accomplish that, then evaluating the success of the endeavor while preparing to do it all again...it is a very active process...
Now, can an 11 year old do this? To varying degrees of success...an 11 year old who is working on modifying tension during stuttering can certainly assess whether he had a hard block or an easy one and evaluate whether the pullout he tried was successful and what he might need to do in the next similar situation. He can also assess whether his easier beginnings, or whatever, are working...Kids need to learn how to do this...and when they have learned, they are ready to "go it on their own" for a while until they need to learn a new set of strategies (or get better at the strategies they've already explored) as they move on to the next level...
Note that my goal is not a certain percentage of fluency or a quantified increase in attitudes...rather, I want the person's goals to be flexibly defined based on what they need -- the older the person is, the more sense this makes, but I believe it even starts in childhood...
An example...I'm in the process of finishing treatment with a 9-year-old boy...he's learned to manage his stuttering and gotten quite good at using speaking techniques to improve fluency when reading and in selected situations. Is he perfectly fluent? No...does he use the techniques all the time? no...but, he is aware of the techniques, he knows how to use them, and he knows how to figure out WHEN to use them. Is he always successful at those times? No...But still, he's about ready for dismissal because: (a) he's been in treatment for a long time already, (b) he is starting to self-correct and manage on his own, and (c) he feels like he's met the goals he has for now...he'll come back to therapy in time when he's ready for additional goals, but for now, he's accomplished what he's going to accomplish...he won't practice at a higher level than he is already (he's already doing pretty well), and he's very comfortable with his speech, confident about his ability to manage stuttering, and completely unconcerned about being teased, etc., about his speech. In essence, he's communicating freely and the stuttering isn't getting in his way (I don't want to force him into additional therapy at this point because I don't want to make stuttering a central focus in his life again, like it was before...there will come a time for that, and I'll be available for him when that happens)...
In terms of the instrument you mentioned (now it its third and nearly final version, termed "CASES: Comprehensive Assessment of the Speaker's Experience of Stuttering") -- the goal of that project is to develop an instrument for documenting progress in treatment that is based on more than just the observable characteristics of stuttering...the instrument combines information about the stuttering behaviors, with a detailed analysis of the affective, behavioral, and cognitive reactions the speaker has to the stuttering, an assessment of the impact of stuttering on the speaker's functional communication abilities, and an evaluation of the impact of stuttering on the speaker's overall quality of life. Together, these measures help to show what changes the person might have experienced as a part of therapy, and highlight several of the areas that are addressed in a comprehensive treatment program.
As to whether the instrument could be used to set criteria for dismissal -- that's difficult to say because the criteria would be different for each person...I think the instrument could be used to document change, but I don't think there would be a set number that we should work toward...the whole point of the cognitive therapy approaches, and this type of assessment in general, is to move away from pure numbers as either a mode of treatment or as an indicator of success....
Hope this helps, and sorry for the length (HIH and SFTL), ;-) S
From: Woody Starkweather
Hi Gunars:
Scott's answer was as complete and on the mark as I have ever seen. Nevertheless, I have a completely different criterion for "dismissal". (I don't call it "dismissal," and you'll see why). I think therapy should end when the client thinks it should end, and I make sure that clients know that this is the criterion right from the beginning and remind them from time to time. So, if they begin to feel that they have made as much progress as possible for the time being, they terminate treatment. Of course, they can come back if they want to also. If they feel for any reason that they are not getting enough out of it for the fee that they pay, then they can and should stop seeing me. This seems to work out really well. I am seeing now a man who was extremely severe when I first met him, long, very long blocks on essentially every syllable. We worked together for about 10 months and he made very good progress, largely because he took a lot of responsibility for his own recovery, was totally honest with himself, and paid close attention to his own experiences of stuttering. Then he came for a one week intensive at our place on the Eastern Shore of Virginia, and reached a remarkable level of comfort with his speech. He was very close to having normal nonfluencies (which would be my criterion, if I had one). So I asked him if he wanted to continue seeing me, and we talked about it. He will see me now less often, and then even less often, fading treatment away to perhaps once or twice a year, as he sees fit. To me, this is the way therapy should "end," just a gradual fading of support at the pace that the client feels comfortable with.
Woody
From: Ellen-Marie Silverman
We are in accord in this important area of service, Woody.
You gave as an example honoring the decision of an adult consumer. I would like to suggest that the same approach can be used successfully with children as well. Although, since they are not able to legally contract service as minors (yes, I do use a contract approach to treatment), I incorporate the decisions of the responsible adults as well. In fact, I incorporated this way of working into the novel I recently published for readers aged 9-12, Jason's Secret. Jason, a 10 year-old, with a serious stuttering problem, who is resistant to speech therapy because of an unsuccessful early experience in therapy, negotiates a fade-out of therapy with his therapist, who says she will let his parents and referring homeroom teacher know of the decision reached and why. The dialogue between Jason and his therapist is realistic and quite complete.
Best,
Ellen-Marie
From: Peter Dhu, Australian Speak Easy Association
Re the Lidcombe program. Lidcombe would generally only be used for pre school children, say age 3 to 6. I am not sure of its success after this.
In terms of determining success, the criteria is usually getting stuttered speech down to 1 or 2% of syllables stuttered. A recent TV shoe with Mark Onsloe describes getting a 4 year old boy who stuttered on 20% of syllables spoken, down to 1%. This was deemed successful and the child would have switched to a maintenance phase.
I had a similar successful experience with my 12 year old son when he was 3. He is now 100% fluent and no longer goes for annual check ups etc.
Peter
From: Patti Kirk, Thisted, Denmark
I work in a school with mentally and physically impaired children 6 to 18 years of age. I have a wonderfully positive-minded, non-aggressive, pacifier-using- 8 year old student (C), who at 4 months suffered an aneurism which has (in part) resulted in a disorder that leaves the two halves of his brain working--but not coordinating their work...(please advise if there is a term for this non-coordination of the two hemispheres of the brain). C is physically at the level of a 4�-5year old child. He remembers many (at least 250) rhymes and children's songs. Sometimes he doesn't say all the words, but emits a 'huh-hu-huh' babbling sound in the correct meter of the verses. He is outgoing, but does not at all like the physical contact of holding hands or being touched on his torso. He is a very emotionally sensitive child whose attention span is not long. C is in 'perpetual motion' restlessly inspecting our class room--throwing and kicking things, unless being read to or sung to--usually on a one to one basis. And C stutters...tries to start up a sentence, but is stuck in 'neutral'--repeats "mum-uh-uh-mum-mum-mum....up to 12-14 times before he can verbalize a thought. The verbalization C comes with may or may not be what he wanted to say. I NEVER interrupt C's stammering pattern, because I have seen that it only stops his thought/concentration process and he seems to start over again, or comes with a disconnected word/answer. I put my hand gently on his shoulder, smile and look at him in a positive-loving way--so I hope he knows I will wait until he can say what he wants to tell me. I have just come out of a long parent teacher conference where I have learned that the parents interrupt him-EVERY time he stutters--the father with "No more mum mum! Talk!" The mother just puts her hand on him--she confided in me that she doesn't have to say anything to him anymore...because she has said it so many times before "C what do you want to say?" The mother acknowledges that C blurts out a word without contextual meaning just to satisfy the father--and many times herself. I'm sorry this is taking so long, but I am hoping you can give me some direction. Has there been any research done on stuttering within the context of brain damaged individuals? What about researh in the area of the brain dysfunction. Where can I go for help? I have read the homepage for BSA Dysfluency, Stammering and Downs Syndrome and it has been helpful to a degree, but C's situation is very perplexing. I feel a great deal of his problem with stuttering comes from a lack of feeling secure. Thank you.
From: Judy Kuster
Patti,
I hope some of the profs here will respond to your question, but I have also copied it under the paper on Acquired Stuttering by Henny Bijleveld at http://www.mankato.msus.edu/dept/comdis/isad4/papers/bijleveld.html
Perhaps she will be able to provide you with some direction as well.
Judy Kuster
From: Nan Ratner
Without see him or hearing him, it is hard to say for sure, but this child's disfluency appears to be more of a language formulation disfluency than classical stuttering. He starts to talk before the components of at least part of the utterance are available for production. Getting him to delay speech until he has formulated more, or facilitating his word retrieval strategies would seem to be more helpful in a case like this.
From: Woody Starkweather
Hi:
I guess this is one of those "men looking at the elephant" things. To me, it sounds as though the child is now reacting to his parents' attempts at correction. Originally, he may have had language formulation problems, but to me it sounds as though the current problem is more complicated. So, for starters I would suggest what I think you are already doing: getting the parents to respond in a way that is more supportive. If the child's emotional reaction can be reduced in this way, then it might be possible to get back to the original problem.
But actually the real problem, as Nan noted, is that we can't really see or know this child through this medium. So the most prudent thing is to seek consultation with someone who is near you who has had experience with this kind of child.
Woody
From: Viren Gandhi
Prices of Stuttering Related Books.
SFA , Charitable Organization, has many Excellent Books available at very low prices. Other Books on Stuttering are often sold at Prices ranging from US $ 20 -40. I am talking only about Books, which PWS should read and not meant for Students etc.
In Third World countries this prices are unaffordable. Very few PWS would be able to afford such books. Also there would be few Libraries having them. Ideally PWS should have his/her own set of books, which he/she can refer again and again when he/she wants to.
In Country like India, Many Book Publishers have arrangements with Foreign Publishers and they print variety of books at low cost. It includes books on Management, Economics, Computers etc. Typically a book which may cost Rs. 1200 abroad is sold here for Rs. 200- Rs. 300. ( 1 US $ = Rs. 48) Those are printed on Lower Quality Paper and are also not Hard Cover Editions. But it's acceptable to us. Even if Paper Quality is Bad (Grass is showing in Paper !) then also it's better having them at affordable price. This affordable price may not be still affordable for many people. Such Indian Edition Books are sold with Condition that this is only for India and Neighboring Countries like Bangladesh, Pakistan etc. Those Books are not to be exported to USA.
We hear, Therapy with Qualified SLP costs a lot in Western Countries. In Third World Countries, we are not sure whether we would find Qualified and Dedicated SLPs everywhere or not. And how many of them would be able to afford that.
I would urge SLPs and Publishers, who produce stuttering related books to look into this matter so books can be made to available to masses in Third World Countries.
In country like India, most of the Bestsellers are Pirated and sold at 1/6th price of Soft Cover Editions but none of those would be into Pirating Books on Stuttering. And Stuttering being such a subject, such books would not find much of a sale. I do not advocate piracy. I would like to get Cheaper Indian Editions, which are affordable to people over here and are easily available. I have purchased few books on other diseases like Hypertension or Eye Care etc., which are sold as low as below Rs. 50. These books are like what SFA publishes in USA.
Internet, Stuttering Related Mailing Lists and Books (affordable) can play a greater role in helping PWS in Third Word Countries.
Though English is most widely used language, country like India would still need translations in Many Regional Languages. We are having perhaps at least 20 or more widely used languages. Our currency notes have Denominations printed in 17 Languages. My search on Internet for Indian Stuttering related sites gave me only one site which had one book printed in Indian National Language ie. Hindi on Stuttering.
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Stefan Hoffmann, International Stuttering Association, Beijing
I agree fully. What is available here in Chinese is mostly for clinicians and is quite old. ISA is slowly starting to translate related material for stuttering persons. Translations however should be matching the cultural and social situation in the country for which they are made.
Stefan Hoffmann (sthoff160@gmx.net)
From: jerry johnson
An excellent question. Maybe the American Speech and Hearing Association (ASHA) could spearhead this quest. I also know that many university professors receive examination copies of books or have rather recent publications they no longer need and maybe they could donate these books to you.
From: Daniel Orla - Via Isolabella 18/28 - 10046 Poirino (To) - Italy
Hello, Dale and thks. a lot for your reply where you tell me that stuttering "can be moved around within the utterance" and that a stutterer "can move the easy stutter to another word". Could you pls. tell me HOW you and/or your clients succeed in doing this? And then, do you think it makes a difference stuttering on a specific word rather than on any other in a sentence? It's still and always stuttering...
T.Y. in advance for a reply! - Daniel
From: Dale Williams
Hello again. When I saw the subject line of �A counterquestion for Dale� I knew I had a pretty good shot at being the first to respond.
Regarding your question... do you think it makes a difference stuttering on a specific word rather than on any other in a sentence?� I should have specified that I was referring to stuttering modification therapy in which the focus is developing easier stuttering (and not eliminating stuttering). So yes, you are right: It’s still stuttering. But it does make a difference because one is manageable stuttering, the other uncontrolled.
As for your other question (how to move the stutter), here’s an example of what I meant. If I tell someone "I was born in Detroit," I visualize stuttering on the /d/ in the word Detroit. The only way I could stutter that word easily would be to do a relaxed bounce and say Deh-deh-deh-detroit. But if I’m not very good at or am uncomfortable with the technique of bouncing (both of which are pretty much true), I still have 2 choices. One is to use the hard and tense stutter that got me into therapy in the first place (�I was born in...[struggle, gasping, lost control]...DEHtroit). The other is to use a different kind of easy stutter on a different word.
Remember, we’re working on the premise that a stutter is going to happen in this sentence. If I use an easy prolongation on in (I was born iiiiiiin Detroit), the stutter has occurred, but in a way that I dictated. I decided when and how I would stutter. I didn’t stop it, but I did manage it.
As I read over the last 2 paragraphs, I see a couple things I should clear up. No. 1: Is this an avoidance behavior? No, not if it’s an overt stutter. If I’m pretending to think and say, ...iiiiiin Detroit, then I’m trying to hide my stuttering, which will lead to more problems down the road. What’s going on inside the speaker’s head is really a critical variable in these types of situations.
No. 2: Aren’t I just adding another stutter? That is, after I’ve prolonged in don’t I still have to contend with the fearsome Detroit? This may be true for some. For many, however, once the stutter is managed, the rest of the utterance can be too.
I hope this helps.
Dale
From: Daniel Orla - Via Isolabella 18/28 - 10046 Poirino (To) - Italy
Not a few times a good deal of my stuttering (and I'm not sure not only mine) is made up of things which have nothing to do with actual and "genuine" stuttering: "tics", rapid quasi-silent repetitions of nonsense words or phrases within myself or whispering of the same words, strange sounds, lip movements, frequent insertions - within my speech - of words or phrases which have hardly anything OR NOTHING AT ALL to do with the utterance. I know all too well that all this is not only USELESS but also and above all DANGEROUS and HARMFUL for my fluency, but I seem not to be able to avoid it; it seems like I MUST do that. When I - sometimes - succeed in courageously getting rid of all this bloody stuff which gets superimposed on "real stuttering", I notice that my fluency increases. But I only succeed sometimes...
Any ideas or suggestions?
Thks. Your Italian friend Daniel ORLA
From: Deborah Kully
Hello Daniel:
It sounds as though you are very determined and have put a great deal of effort into managing your speech. Some of the struggle behaviors you describe are not typical of most people who stutter (for example the "tics," nonsense words and strange sounds). I would encourage you to consult your doctor and, if possible, a speech pathologist.
I wish you well.
From: Daniel Orla - Via Isolabella 18/28 - 10046 Poirino (To) - Italy
I'm just discovering Neurolinguistics (which was practically unknown to me till some time ago). D'you think this science might be useful for the treatment of stuttering too, and if so, in which way and to what extent?
Bye-bye - Daniel
From: Judy Kuster
Daniel,
I'd suggest you read the paper on this conference by Henny Bijleveld, who is a Professor in Neurolinguistics, and then post your question to her.
Judy Kuster
From: Andy Floyd
Hi! I know this is a general question, but I was wondering if there is anything special with the treatment/evaluation of ESL kids who stutter compared to english only kids who stutter. I'm about to give a presentation on school-age stuttering to SLPs and was asked this question (pre-presentation question). Thanks for any help you can give me.
take care, Andy
From: Ken St. Louis
Dear Andy,
Nan Ratner provided a great answer to both of your questions. Let me also add a few comments.
I wish someone would carry out an exhaustive review of the literature internationally on the subject of bilingualism and stuttering. There is actually a great deal of information available, but, to my knowledge, it has not been pulled together recently into a careful, objective review that is available to those of us in the USA. As you know, many of the people of the world are reared in multilingual environments. Anything that is known about stuttering in those areas could have some important clues about the nature of bilingualism and stuttering. There are also a number of studies of stutterers who speak more than one language. The problem seems to be that the area is so large and so complex that we don't really know what to make of the divergent results that have been reported.
In addition to Nan's answer, I suggest you take a look at the interchanges with Daniele Orla at the beginning of this section for more insights and experiences. In the meantime, I believe you will need to do what the rest of us do: consider each case individually. I know that is not likely to completely satisfy a group of SLPs who want to answers, but, at present, that may be the best we can do.
Ken
From: Andy Floyd
Hi! I forgot something in my last post - sorry. This question comes from the capacities and demands model mind frame. I was thinking that if a child had a predisposition to stutter and then they had to go through the rigors of learning and being taught in a second language (such as Spanish speaking household going to an American school), could that be the environmental/linguistic kick in the pants that may cause stuttering to emerge and/or increase the severity? I know the answer I might get is "It might," but I'd still love to hear someone’s thoughts : )
take care, Andy
From: Nan Ratner
Andy, that's a good question, and while you already answered it ("it depends!")in some sense, here are a few things to consider: From the language perspective, there seems to be little doubt that language stress can aggravate stuttering, be it in one language or another. These stresses may cause different profiles of stuttering (on different types or locations of words) as I and others have written, in bilingual speakers, depending upon the structural characteristics of the language being spoken. For instance, sounds stuttered in one language are often not the same as those stuttered in another, while there may be more consistent difficulty with certain parts of speech or grammatical constructions. There are varied reports of stuttering being either better or worse in a second language being learned. In some cases, the amount of deliberation taken before speaking in a less familiar language may help fluency, while the grammatical load may make things worse in other circumstances. I think it is important to consider OTHER factors in a bilingual or ESL child's stuttering when considering treatment options. For example, Brian Humphry did a nice paper at the 1999 ASHA convention that showed that generalization of treatment carried out in one language was relatively poor to the other language. I interpret this to indicate that the therapist must consider affective and cognitive factors that may impede the child's ability to use skills in certain environments, as well as pure generalization concerns. So, if one environment is more accepting and helpful than another, or if the child is less comfortable in one speaking situation than another, we might not expect equal fluency or transition between treatment and "real-world" gains. I will stop here, but it is clear that we need more work on this topic because of the growing number of children in our schools for whom English is a second language.
best regards to all, Nan
From: Brian Humphrey
Hello Nan,
Thanks for your thorough discussion of the many factors that appear to affect both the degree of stuttering in the languages that a PWS may speak, and the degree of treatment transfer to another language. Here are some observations on three factors: age of the subject, language predominance, and order of language learning.
The subject discussed in my 1999 ASHA poster session was a woman in her early thirties whose predominant language was English; she was treated in English and changes were monitored in both English and Spanish. She achieved a 70% reduction in stuttering frequency in English, the treated language, while achieving a 40% reduction in Spanish, the untreated language, before withdrawing from treatment for personal reasons.
Another subject in this continuing study, in his early thirties, has been showing better transfer of fluency gains from English, the treated language, to French, the untreated language being monitored. It is possible that the differences in transfer of fluency gains may be related to a difference in language history. Unlike the first subject, this subject was not always predominant in English. He spoke mainly Arabic as a child, mainly French as a teenager, and mainly English as an adult.
Yaser Al Natour conducted a study that was strikingly similar to mine at the University of Jordan, and we presented a comparison of our studies at the 2001 Convention of the Florida Association of Speech-Language Pathologists and Audiologists (FLASHA). He treated a set of twelve-year-old twin girls in Arabic, and monitored their progress in both Arabic and English. The twins' dysfluencies were comparatively mild, but he achieved greater than 97% fluency in both languages, by treating just in Arabic.
Hopefully, the ideas and insights generated by treatment studies such as these will gain validity as case reports are added. Studies like these require time, patience, perseverance, and the good fortune of having subjects who stay with their treatment.
From: John Kagie
Dear panel,
Your views on the following observations would be very much appreciated. For many PWSs stuttering results in a low self-image and feelings of shame and inferiority. Especially those who have a relatively mild speech impediment will do almost anything to hide their handicap. I can understand that for a part this could be explained by considering that humans are a social kind of animals, want to belong to the group and try to conform themselves as much as possible to what is regarded as normal in order not to be excluded from the group. On the other hand, this kind of reaction turns out to be very contraproductive. In stead of admitting we have a problem and crying out for help, we spend heaps of energy on trying to hide our problem. What kind of mechanisms are involved here, what makes people act in way that only adds to their problem and is not directed at overcoming it? What can we tell people who are still in that phase of trying to cover up their problem to get them to adopt a more effective attitude?
Looking forward to your reactions, John Kagie
From: Woody Starkweather
Hi Everyone:
Your question gets right at the essence of therapy for stuttering. Since stuttering typically begins during childhood, I think it is quite natural that avoidance of some kind is the early response. Actually, it seems that frustration is the first reaction, then avoidance of one form or another. Sometimes, it is just struggle behavior, which grows directly out of the frustration. Sometimes it is the use of tricks to help get words out. And sometimes it is trying to hide the stuttering, but these reactions are all basically avoidance behavior. The problem is that avoidance, as a strategy, tends to grow the fear that motivates it. So, the more the child avoids (struggles, hides), the more afraid they become and this leads to additional avoidance. Once it gets started, it creates itself. Stuttering is a disorder that tends to grow itself, once planted.
As clinicians, we need to reverse the process. Confrontation of the feared event is a highly effective method for reducing fear. It is the opposite of avoidance, and it kills fear and improves communication just as surely as weedkiller makes your flowers grow better. But it isn't easy to gain a client's trust to the point where they will start the confrontation process, doing the thing they are afraid of. This is what takes time, and it is what makes therapy a kind of art form. But once the person starts to get some fear reduction as a result of confrontation, they typically start to really enjoy it.
Woody
From: Steve Hood
Hello, John
You might want to check out the paper that Chris Roach and I did for this ISAD conference: "I've got a secret.... story of a covert stutterer). This has information that may be of interest to you.
Woody gave you some very good advice. Anything I might add would be along the same lines. When the feelings of inferiority, guilt and shame all coexist with the frustration, struggle and fear, it is understandable that the PWS would try to avoid words, people and situations, etc., associated with stuttering. This is why we need to help the PWS to become more accepting and tolerant of stuttering. Fear and avoidance only serve to help perpetuate the problem. Elsewhere in the ISAD Conference, there are papers dealing with desensitization that you may find helpful. Of course, this involves taking some short term risks in order to achieve some long term goals, and as Woody indicated, this doesn't happen over night. It takes time. It also helps to have a supportive clinician. Those PWS who are chasing the "Fluency God" and trying to be 100% fluent as a result of tricks and avoidances are on a collision course with setbacks because the shame and guilt and denial and fear and avoidances remain strong. Acceptance is important, and those who show this acceptance are able to do such things as voluntary stuttering -- they are able and willing to "advertise" their stuttering -- willing to talk openly about it.
You have raised an important issue, and I hope others will join in and add to this discussion.
Best wishes on your journey !!
From: Steve Hood
Woops !! I hit send before adding two references.
The other two papers I was specifically referring to are (1) the panel on "Pushing the Envelope" which gets at the use of desensitization, and the Craig Stephenson paper " A Search for Fluency that Ended with Acceptance."
From: Joseph Lukong - Cameroon
At our support organization we read an article to effect that some doctors and researchers have discovered a drug for stuttering. How can we know more about that? Do drugs cure stuttering?
From: Dale Williams
Joseph,
I'm not sure to which article you're referring. Generally speaking, there are many drugs that have been reported as helpful in single cases. To my knowledge, none have been offered up as a cure.
In my local support group, we have had people report reduced stuttering while on various medications. In some cases, however, the side effects were so bothersome that they said they'd rather stutter.
There is an on-line essay by Larry Molt that might interest you. It's available at: http://www.mankato.msus.edu/dept/comdis/isad/papers/molt.html
Good luck.
Dale
From: Fabian Lukong - Cameroon
I have a child of 6 and half years old who stutters a lot and I often pity him in his struggle to say a sound or a word. I sent him to school with the hope that he can learn how to write and communicate by writing. He is very dull in school. Last year he failed and is repeating class one. Last evening I discovered to my total embarrassment that he cannot count from 1 to 20 coherently. I am totally confused. Can this be associated to his stuttering? Do stuttering persons have a sort of mental weakness? I am totally worried by my son's weakness in school.
From: Woody Starkweather
Hi Everyone:
No, stuttering is not a form of mental weakness. On the average, stutterers are just as intelligent as other people, although sometimes they test a little lower because the difficulty in talking can interfere with their responses, even in written tests.
On the other hand, there are some developmental problems that are somewhat more common among stutterers than among nonstutterers, some of which are various types of learning problems. And of course he might have both a stuttering problem and a learning problem. They don't need to be related. I would advise having him evaluated both by a speech-language pathologist and by a psychologist who can do psychometric testing. Then, you will understand the nature of the problem.
Woody
From: Fabian Lukong
Thank you sir for the clarification you gave me concerning my son. It was nice to hear that stuttering persons are as intelligent as the others. Since there are no therapists or pathologists here I will have to devote 2 hours of evening classes to my son every evening and I hope his situation will change.
From: Kim Turnquist
Sorry about that, hit the wrong button... I'm working with a 6th grade boy who qualifies under state criteria for stuttering. This child expresses no concern emotional or otherwise about his speech and does not allow it to interfere in his life. We have talked about and practiced speech techniques for the last year and he can recite them back and use them, while he remembers to, in the speech room. Where do we go from here, under criteria as I have said he still technically qualifies for services.
From: Steve Hood
Hello, Kim
You said he expresses no concern, emotional or otherwise. It seems to me that there are two possible things that might be happening: (1) His stuttering is mild enough and not bothering him enough to be of concern to him. If so, then he is basically talking well enough in most situations and with most people so that it is not a problem that he feels like worth working on at the present time. He is "ok" with his stuttering, and with him self. OR, (2) His stuttering is frequent and severe, and is limiting his communication options, then there may be some other issues that must be handled in order for him to be "ready for therapy" -- i.e., increasing his internal motivation, reducing possible denial, shame, guilt, believing in you, and your therapy, and believing in his own ability to profit from it.
If the first situation is correct, then it might be best to give him a "speech vacation"-- let him stride out on his own to do his verbal bidding, and let him know that you are around and available for him if he wants to return to therapy. If the second issue is correct, then it will probably be necessary to work on these other issues, and for him to assume some increased responsibility for being an active participant in his therapy. If so, then you need to address these issues, and if this doesn't work, give him a different form of "speech vacation" --- Dismiss him from therapy, but let him know that therapy is available and that you would like to work with him, and he can return to see when after he is more ready to commit to the program.
Kids in this age group, up to the late teen years, are sometimes stuck in the middle. They are too old to be treated as kids where parents make major decisions, and not yet old enough to be making adult-type decisions. These kids need to become ready to "run the race" -- rather than sit on the sidelines. Clinicians can sometimes help kids get ready to run the race, and can help kids run the race, but clinicians cannot run the race for the kids.
Hope these ideas help.
From: kim turnquist
Hi Steve:
Thanks for the input. I really believe this kid falls into the #1 slot, but to be sure I would like to share your thoughts with the school social worker and his classroom teacher if that's all right with you.
Kim
From: Steve Hood
Hi, Kim
Of course it is ok. He is your client, and not mine. I think getting additional input from teacher and social worker is a good idea as well. And I must say that I am impressed that you have access to a social worker ! The is neat. I am impressed !
And of course trying to be sure the boy buys into the game plan is important. I am not sure if I said so directly, but I had assumed he would be part of the decision making process. Stretching his wings and accepting some self-direction can be a wonderful experience for these kids, and of course, it also involves some calculated risk taking. But the risk is lessened if he knows he has the support and help of a trusted and competent clinician to whom he can return if he feels he needs to do so.
I hope things go well.
From: jerry johnson
Hi Kim: Symptomatic modification takes much effort and concentration. I think that often it detracts from spontaneity and it sounds like this kid is a free wheeler. Why not build on that concept with fluency enhancement and magnify his ability to talk OK. You put your finger on the problem of "remembering to" do SOMETHING. No fluent speaker has to do this, but we expect kids to do it. Tell him there is no "magic" in talking, "just letr' rip!" He has found a comfort zone for himself and that would be what I would enhance and to encourage those around him to "let him be himself." Is it ever too late to begin again with symptomatic modification? No. Will there be a time when he INITIATES a need for therapy? I would leave it up to the kid to decide. Why not maintain periodic contact with the kid outside of the therapy room. Be his buddy. Maybe take him fishing or some other activity that you are good at. Kids need adult role models and maybe you can be his friend rather than his therapist. Email contact also works. Why not try it out? Your concern shows me that you are a likely candidate for "friendly therapy."
From: Kim Turnquist
Thanks for the helpful ideas Jerry:-)
From: Viren Gandhi
Environment in House.
When treating or evaluating PWS, how much emphasis is placed on understanding environment in his/her family.
If there are Depression, violence or any other problem in PWS's family , should they be looked into? Does it affect PWS more ? Would it affect his overall speech / Confidence etc. ?
If such factors are left untouched what it would leads to ? Does it reduces chances of PWS's recovery ?
Remember I am talking of these situations which might be present since PWS was a child and he/she could be adult now. Those factors could be present since long or are created recently. Some factors may have ceased but some new factors may have been created. How much overall healthy, open environment helps PWS ?
Should Professional help should be recommended for such treating such factors ?
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Woody Starkweather
Hi Viren:
This is, in my opinion, a very important question -- one that does not get asked enough by SLP's treating stuttering.
The answer is of course, yes, if a child lives in a home environment where there is violence or the threat of it, addiction, any form of mental illness, such as depression, or even physical illness, he or she can be chronically anxious over these problems, depressed himself, and in many other ways affected by them just as any child in such a house is affected. It may or may not be harder for the child who stutters, but home environments like these are so extremely difficult for children that it doesn't really matter. The stuttering is a relatively minor problem, compared to the home environment. One way in which such an environment is very important is its effect on treatment. A child who is being abused, who lives in a family with an addicted family member, or who is sexually abused, or who witnesses such events, is UNABLE to focus on anything else. Therapy will be very difficult for such a child, if not useless. I have seen several cases like this. In one case, we worked for a couple of years with a young child. He made progress with his speech in school, with his friends, and of course in the clinic, but at home he continued to stutter. Eventually, and more or less by accident, we discovered that the father in the family had a gambling addiction, as a result of which he committed crimes to get money for gambling, and generally left the family with no sense of financial security. When the child went home to this insecure atmosphere his stuttering returned completely. We got the father into rehab and the family into counseling and within a few months, his stuttering was also treatable in the home. Now he is speaking normally.
I think it is always important to try to find out about these things when the parents are interviewed. Of course, most families try to hide this kind of information, so it can be quite difficult to know if one of these things is present. But when it is clear (as for example with a parent who is drunk while accompanying a child to the clinic), it is, in my opinion, best to say "Sorry, the family is not in a place where therapy for stuttering can be of any help. Get help for the alcoholism (or whatever the other problem is) and then come back." This is difficult, but it tends to get the parent with the problem into treatment, which is what needs to happen before the stuttering can be addressed anyway.
Woody
From: Daniel Orla - Via Isolabella 18/28 - 10046 Poirino (To) - Italy
Dear Judith,
Thank you for your suggestion to read Mrs Bijleveld's paper on the online conference, in order to get more information about stuttering-related neurolinguistics.
But I can't find this paper. How can I get to it?
T.Y. - Daniel ORLA
From: Judy Kuster
The entire conference is online at: http://www.mankato.msus.edu/dept/comdis/isad4/isadcon4.html
Dr. Bijleveld's paper is the second paper under Invited Papers. It is called "Acquired Stuttering." The direct URL to her paper is http://www.mankato.msus.edu/dept/comdis/isad4/papers/bijleveld.html
[note from Tom: the above links do not work]
After you have read her paper, you can post questions and/or on http://www.mnsu.edu/comdis/cahn_mnsu_edu/bijleveld/
Judy Kuster
From: Viren Gandhi
Should PWS be blamed?
If PWS has attended therapy but then he didn't practiced or he didn't have motivation to improve, should he be blamed?
He does have problem in life, but still he fails to confront stuttering. No one around him, either family or friends , ever discuss or takes interest in his stuttering or problems resulting out of it. Never he himself is able to gather courage to confront stuttering head on. In this way, years have gone by and problem has become more deep-rooted.
Should PWS in such condition be blamed?
I have heard often, I should have had confidence. People overcome it and so on. But people saying that do not have slightest idea about Below Surface Aspect of Stuttering. And neither do they want to get that idea.
Regards, Viren Gandhi, Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: jerry johnson
Hi Viren: You have expressed the most profound questions yet: including "Ill feelings...." May I respond? SLP's are invested (monetarily and emotionally) in their therapy. If only the PWS would only "try harder" they would be alright. Take a look at this statement: the responsibility rests upon the PWS! Too few times, mostly in the past, have the SLP's taken a heart to heart look into the PWS's soul. As students we have been taught to maintain an emotional distance between ourselves (SLP's) and the client. How wrong we have been. We must feel the pain and relate to it. We must walk in the persons shoes and know that it takes time, loving (loving?), competence, and caring to make the PWS whole. We can't bully the PWS into becoming whole. We can only nuture the PWS and use our professional skill in aiding and abetting the PWS into realizing that they truly do have the talent to become a better speaker and to realize their other talents too. "It is easy for the clinician to say," but not so easy to overcome so many years of pain and torture of being a PWS. You must walk in my shoes to understand! Now on to the ill feelings of brothers and sisters. Sometimes the entire family is not brought in to the therapy picture. Kids are not Chine Dolls and they are resilient beyound the parents understanding. A stuttering child is often to be protected and pampered, often to the detriment of the other children in the family. The best advice I have to give to a family is to environmentally reorganize so as to take into consideration the unique characteristics of all the family members and to tolerate imperfection of each member. This is a long story, much too long to talk about here, but it can be done to the benefit of all. Just suffice it to say that this condition need not exist if good family counseling is available. Best to you.
From: Woody Starkweather
Hello Viren:
In my opinion, the client should never be blamed for an unsuccessful treatment. Many clients are simply not ready to confront the issues. Some are trying so hard to be fluent, and have been trying to be fluent for so long, that they cannot see any other way. So, when the clinician asks them to take a therapeutic risk, they can't do it. This is not their fault.
It is the clinician's responsibility to motivate and stimulate the client so that they are as receptive to therapy as they can be. But sometimes, clients are not in a place where this can work. So, I don't think it is helpful to try to find blame for either client or clinician. It is more helpful to try to understand what happened, and what might be done differently.
Woody Starkweather
From: Viren Gandhi
PWS often avoids housework or other work. He is often stubborn. And often his brothers/sisters may have do those work. Also they would feel PWS is getting away without taking responsibility and doing work.
PWS as well as his brother/sister may be young and they do not grasp deeper things, which happen without any knowledge on their part. Like PWS resorts to avoidance at all cost. He would become stubborn. ( I remember I used to do so in order to avoid work).
Such conditions may lead to bitterness among PWS and his brothers/sisters, who may feel PWS is favored or is not doing work etc.
It can lead to many complications in years to come. Has any SLP experienced this or heard any PWS taking about such things.
Such conditions are unique as it happens within family leading to damaging relations beyond repair.
Regards, Viren Gandhi, Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Viren Gandhi
Extent of Real Stuttering.
Subject of this mail may sound very odd. But let me explain it.
In School days I remember I used to stutter a lot. Till 5th standard we had our mother-tounge as medium of instruction in school. Then we learned English. Later as years went by, I became proficient in English. Now and from many years, I speak in mixed language. Often I use word from English in sentences. Adding to it, we can used 3rd language ie. Our national language Hindi.
I have observed and I know I use mix of all 3 languages. Whenever I feel I have a problem with this word or sentences, I change word or language. All this happens so fast as it's like my mind or brain is programmed for it and does calculations like super computer.
For me to understand and getting back to know how I really stutter would involve stopping using multiple languages in conversation. And it is perhaps hard task.
I had posted on Stutt-L few months ago inviting suggestions if using recording device can help analysing language pattern or not. Then I can concentrate and try not to switch language or use mix of languages.
People will consider me quite fluent in face to face conversation but in reality I might be stuttering a lot if I do not mix languages or switch languages.
Has any SLPs have done study on this matter ?
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Ken St. Louis
Dear Viren,
You are a veritable spring for questions about stuttering!
This question is a good one. My thoughts on the subject of the interactions of different languages and stuttering are in responses both to Daniele Orla and Andy Floyd earlier in this threaded discussion.
There is no doubt that a great deal of research has been done on the effects of speaking different languages and stuttering. To my knowledge, however, we lack a large focused series of studies to sort out the variable results that have been reported. As I mentioned to Andy, we also lack detailed, objective reviews of the literature.
Thanks for all your activity in these discussions.
Ken
From: Woody Starkweather
Hi Viren:
Because at Temple University we had a bilingual training program, we have had a fair amount of experience with bilingual stutterers. The phenomenon you describe, switching to a different language momentarily to avoid stuttering, is not uncommon among bilingual stutterers. Essentially, it is the same thing as the monolingual stutterer switching to another word that he or she feels he will say fluently. It is simply that the bilingual stutterer has more choices. And, of course, the options are available only when the stutterer is talking to someone who shares the same languages.
So, what should you do? I say to all stutterers who change words to avoid stuttering that word-changing is not a good strategy; it increases fear and leads to further word-changing. In the end it can seriously damage your ability to express yourself clearly because in order to change words, sometimes you have to change the sentence structure also. This is also true -- perhaps more true -- in the case of bilingual changes. However, each time that you are going to stutter and feel that by changing a word you will speak more fluently, you have to make a decision. If you don't change the word, you may stutter, and this may be at least embarrassing, and in some circumstances, it might have more important consequences. So, there are times when you will decide to go ahead and change the word because the short-term positive consequences seem more important than the long-term negative ones. I think that as long as you are well informed about these different types of consequences, then the decision should be up to you, and you should try to feel comfortable with whatever decision you make, that is, do not berate yourself if you made what seems afterwards to have been a bad decision. No one is perfect, and we strive for progress not perfection. These decisions are made very quickly also, and cannot always be correct.
Good luck on this journey.
Woody
From: Viren Gandhi
If PWS is spending time - reading listservs postings related to stuttering, reading internet sites, exploring therapy with SLP or do anything related to increasing his knowledge about stuttering- which in turn is directed towards improving himself to face and overcome Stuttering. How much is enough?
Should anyone ever feel it's too much ?
Is there really anytime it is enough if PWS is not reasonably recovered? (One of my Pen-pal in US , who stutters, sometime back said she would pass posting on Stutt-L and asked me not to forward as she is quite recovered and doesn't feel a need to read anything on stuttering).
All this forms a support system, which helps PWS immensely.
There are no tangible benefit appearing instantly. Do they appear instantly?
Should anyone related to PWS ever feel it's waste of time or so?
Where people are ignorant, especially in under-developed countries or third word countries, often this may happen. There may be other compelling reasons for family or even if they do not have reason, they may feel PWS is wasting time doing all this. But like we PWS know how much better we feel, if we have attended a PWS meet at clinic. There is lot of moral support.
For PWS, who have lost out on many things in life, recovery and able to things as he wishes without hesitating out of stuttering is one of most joyous things. It is immaterial if he stutters less or more, but he is able to do things as he wants and is free from fear.
Has any SLP have any comment about this?
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Viren Gandhi
Importance of Role Model
I am no professional but a PWS.
I have read about Role Model theories. Like a son, learns by seeing his father doing all things in world. Son may have his father as a role model or someone else as idol
. PWS when grows, he mixes in his neighborhood. He may avoid mixing or socialising. I remember I used to go with my elder brother to play with other kids. I do not remember I had stuttering at that time or not. I used to go in our residence area few buildings apart. Still today I can pinpoint where I used to play. Then somehow my brother , for some reason stopped taking me with him. May he had his own circle of friends or whatever. And during those days , I may have stopped mixing with people and then more severe effects came in.
Like I never used to mix with anyone. I made no friendship with even boys of similar age in next or opposite building. I started staying more indoors. Never used to mix with people of same age. I was so afraid they I never used to be on local cold drink joint where all my friends used to meet. Always avoiding meeting new people.
Somehow in those years, if somewhere something could have been done, then severity could have been less. For almost 10-15 years I followed same pattern avoiding people. Things are changing now but still I have a long way to go.
My emphasis as from personal experience is that, SLPs may try to see in young people that they are getting role model and hence not getting into loop like many people like myself may have fallen into. If that trap is avoided then PWS may be somewhat be less fearful of socialising.
Regards, Viren Gandhi Mumbai, India E-Mail : viren_gandhi@yahoo.com
From: Deborah Kully
I think you are right - positive role models can have a very powerful influence on people of all ages, and speech pathologists can (and many do) consider this in working with their clients. We certainly have seen this in our own work and routinely invite people who have completed therapy speak to those who are just beginning the process of treatment. Not only do the new people gain valuable insights into the experiences of others who are working to manage their stuttering, they see living examples of people who are developing active social lifestyles and constantly seeking opportunities to talk rather than avoid. These role models are very powerful in inspiring hope and courage, especially in children. In our experience, it is the people who are in very public roles - like teachers, school principals, sales people - that have that have the greatest impact.
Another wonderful source of inspiration are the posters and pamphlets produced by the Stuttering Foundation of America, the National Stuttering Association and Stutter Friends. These materials feature famous people who stutter and convey the message that stuttering didn't stop them and need not stop you reaching your full potential. The materials feature mainly North American and British people who stutter; it would be wonderful if similar materials were created in other countries - perhaps there are.
Best wishes, Deborah Kully
From: Kris
I am wondering what is generally recommended for the amount of time a child is seen for therapy. I understand there is no set formula, and that severity, age, and motivation should play a factor. Would it be more benificial to see a student every day for a certain number of weeks/months, or should a child be seen a few times a week for months/years?
I work in the public school system and scheduling is always an issue. When they see me, they are missing academics. The clasic therapy model of 1-3 times a week for 20-25 minutes seems to be accepted by most of the administration and faculty. But is this meeting the needs of the student?
Any thought? Thanks for your help!
From: Fabian Lukong - Cameroon
From: jerry johnson
hi Fabian: The age old question and a good one. The publications answer this in some detail, but consider this: no ones life is static, it is always changing and so is the environment and the psychology of the child. Speaking is a condition of maturity, the older we get the better we get at it. I almost think that the comment about "dont worry s/he'll outgrow it" has some merit. However, if all the negative environmental conditions continue to exist and become magnified then the child is at risk. I would rather error on the side of early consultation than a wait and see attitude. The earlier the better, especially if the environment can be modified to the benefit of the child. This sounds like common sense to me.
From: jerry johnson
hi Fabian: The age old question and a good one. The publications answer this in some detail, but consider this: no ones life is static, it is always changing and so is the environment and the psychology of the child. Speaking is a condition of maturity, the older we get the better we get at it. I almost think that the comment about "dont worry s/he'll outgrow it" has some merit. However, if all the negative environmental conditions continue to exist and become magnified then the child is at risk. I would rather error on the side of early consultation than a wait and see attitude. The earlier the better, especially if the environment can be modified to the benefit of the child. This sounds like common sense to me.
From: Fabian Lukong - Cameroon
Can you explain to me why my stuttering becomes worse when I take alcohol?
From: jerry johnson
Hi Fabian: Prior to therapy booze was good for my fluency, but after therapy I would lose my ability to use my control techniques and I stuttered more. Go figure. Is there nothing of pleasure that is ultimately bad for us mortals?
From: Woody Starkweather
Hi everyone:
Stutterers seem to fall into two groups -- those whose stuttering is made worse by alcohol and those whose stuttering is improved by it. Some stutterers speak always with a sense of control. Maybe they are a little milder and with control can speak better. The type of control varies. These people generally speak less fluently when they drink alcohol, because the alcohol makes it harder to maintain the control. The other type of stutterer is influenced primarily by anxiety or fear. When their fear is stronger, they struggle harder to be fluent and as a result stutter even more. For them, the alcohol lowers the anxiety level, and they don't struggle so much, so their stuttering improves.
There is, in my opinion, a somewhat elevated danger of alcoholism among those whose stuttering is significantly improved by alcohol, and I advise my clients who show this pattern to be particularly careful about their alcohol use. Getting addicted to any substance is no easy thing to deal with. I have had a few cases, but not many, who showed the same pattern with marijuana.
Woody
From: Ken St. Louis
Dear Fabian,
I want to agree completely with Woody's answer. That is what I have been teaching my classes on stuttering for years.
I also wanted to mention that I have had two stutterers in therapy over the years who were alcoholics, probably because they stuttered. This made both problems more difficult to treat.
Ken
From: Janet Skotko
I have a client in his late twenties. He never suttered until he decided to quit all substance use/abuse. He is now quite upset that the result of something good is something 'bad'. He is extremely embarrassed by this "new" aspect to his speech. I know that covertly he is asking me if he should return to his earlier behaviors and knows that I would say "no", so he does not ask. But I do not know how to explain what has happened. I am also wanting to be very creative in how I approach treatment with him. I'd like any and all suggestions and adivice anyone has!
From: Woody Starkweather
Hi:
Sobriety is such a huge gift. Stuttering can become a very minor annoyance through treatment. It seems to me not a difficult decision to make.
Woody
From: Ellen-Marie Silverman
Hi, Janet,
Something you might want to seriously consider is establishing a "sobriety contract" with the individual you describe who is your client and who abuses alcohol. At the very least, such a contract would specify that you will work with him only when he is a non-user. He is to appear for all therapy sessions alcohol free, i.e., no imbibing wine, beer, etc. for at least 12 hours prior to his treatment session. If he does not accept or follow this term of treatment, I doubt you will probably become much more than an enabler for him to continue as he is.
The gift of your time and expertise is a valuable one. It can not be fully given nor received by someone whose perceptions, memory, concentration, and judgments have been clouded by drinking.
Your client may not appreciate being approached to make such a commitment. He may demur and deny that his drinking affects his ability to respond to your treatment efforts. But, if you believe in the importance of only working with individuals who are attentive to the treatment experience and hold to this condition of treatment, you may make hime "wake up" enough to seriously approach the process of change. If he refuses to accept such a condition of treatment, then you will have to determine how much change you can reasonably be able to facilitate in this person at this time.
Best wishes,
Ellen-Marie Silverman
From: S. Scallon
My son who is 11 has at least since age 4 shown dysfluencies that are unusual, and I now wonder if he is showing cluttering. He has never shown pressure during speech, but often restarts statements, adding one or two new words each time, and seems rushed at times. He has limited awareness of this. He has no word finding problem but does show word-final dysfluencies, as in “the monsters wouldn't fight...ightbut they don't care for each other. What is the way to approach this, to make him more aware or to ignore?
From: Ken St. Louis
Dear Steve,
Your question about whether or not your son clutters is a very good one. I read with interest your question to Brian Humphrey after his paper on final word disfluencies and his answer. Honestly, there is not a great deal that I would add at this point.
You might want to take a look at a paper I coauthored with Dr. Florence Myers for the first ISAD online conference on cluttering. The URL is http://www.mankato.msus.edu/dept/comdis/isad/isadcon.html. This summarizes some of what we think we know about cluttering.
As to what you should do with your son, I would suggest sitting down with him at a good time when things are calm and proceed as follows. First, ask him if he is aware that he sometimes repeats the ends of words. If not, give him a simple example like you did in your question. Then, ask him if he ever did (or thinks he might) try not to repeat words like that sometimes. Next, if the conversation is still going well, you might try to set up a short session (e.g., 5 minutes) with a fun activity every other day or so wherein you remind him of final word repetitions and he tries to reduce them. You could come up with some kind of reward system for him to reduce the disfluencies once you have a sense that he knows what they are, maybe a trip to the mall, fast food restaurant, shooting some hoops, etc. If he is a typical clutterer (I do not know that he is!) and has been relatively unaware of these disfluencies, this should not be terribly aversive and should be helpful. On the other hand, if he reacts negatively to any of this, I would recommend not pursuing it any further. In either case, you should work with a qualified speech-language pathologist during this process in case you need some advice and help.
Again, I don't know if this will work or not, but I don't believe there is any danger in trying, so long as you can stay calm, supportive, and noncritical.
We have been connected via email through another contact, so I assume we will communicate further about your son. Good luck.
Ken
From: Lisa Geng
This is a message that I just posted to our nonprofit's grouplist today. When someone let me know about this online conference-I wanted to share this here to hear your thoughts! I'll also enclose a recent Press Release so that you will understand my reference to EFA (and what that means!)
Subject: stuttering apraxic
I know I've brought up dysfluency (or stuttering) before-and since most of you didn't respond, I thought it was something that most of you in this group are not dealing with...or not dealing with yet. But because I have talked and emailed with some of you privately about this -I wanted to bring this up again in hopes that more of you will feel it's OK to talk about. Any speech challenges are not off topic to our group!
I'm not sure of the exact connection-if any-between apraxia and dysfluency, but when you read up on the neurological motor planning challenges of stuttering...sounds like there is a bit of overlap. My five year old apraxic son Tanner's SLP does feel that a connection is possible, but of course no one knows yet. As children with apraxia are beginning to progress faster speech wise than before because of EFA -some strong stuttering or apraxia "facts" may have to be revaluated. Not all the stuttering or dysfluent children with apraxia were on EFA supplementation-but all of the apraxic children were at the point where they were trying and starting to put together sentences.
As Suzanne says, "Once you reach the stuttering stage that's a good thing because at least they are talking!"
With Tanner-he has progressed incredibly with therapy and EFAs (first Efalex and now ProEFA) However, Tanner went through a stuttering (or dysfluency) stage that started when he was 4 years old which was painful - for us more than him. I found that ignoring the stuttering (for that whole painful year) and talking v-e-r-y-s-l-o-w and waiting and waiting for him to finish a thought...he didn't improve at all.
As I wrote in an August 2, 2001 post, Tanner's speech therapist Michelle Orgeta MA CCC/SLP started using (experimentally for the stuttering) something used by OTs called "therapeutic listening" and the change has been amazing -Tanner is fluent most of the time now.
Now, with therapeutic listening and with "direct approaches" to stuttering-Tanner is fluent! I actually found this stuttering research article online and starting trying this "direct" approach- and found it to work amazingly well! When Tanner gets "bumpy" speech now-I just say the word "smooth" and Tanner repeats it without dysfluency! This is the link http://www.mankato.msus.edu/dept/comdis/ISAD3/papers/cordes.html
The main page to this site is http://www.mankato.msus.edu/dept/comdis/ISAD3/isadcon3.html where you can read all the lectures and the kids page where they post, etc.
Tanner's story is online at http://www.apraxia.cc or in the LCP Solution book or online at http://www.drstordy.com/stories.html -and who you can hear speaking at http://www.debtsmart.com/talk/tanner.html
Our secretary Stacey, told us at the last CHERAB meeting that her four year old apraxic son Evan, who was on ProEFA and has been doing amazing as many of you know, began to stutter. She took Evan off of Pro EFA and the stuttering he had developed stopped within a week. That was good.. but what was very bad was that along with the stuttering went his clarity in speech and attempts at talking! Stacey was devastated that Evan, once again, seemed "very apraxic" Once back on ProEFA again, Evan is again speaking well-the stuttering is back a bit, but Stacey doesn't mind it as much this time because she is convinced something in the ProEFA is helping Evan and says "I'm a believer now!"
As Dr. Katz says we need clinical research to understand and know why these things are happening-but isn't this exciting that we may be on the way to finally really understanding something that has been around for ages?! But maybe the links between apraxia and stuttering aren't that new...
Speech Motor Exercises Applying Motor Learning Principles to Stuttering and Apraxia David A. Daly, Jeanna Riley and Glyndon Riley (2000) "A practical and innovative program that has emerged from the authors' combined clinical experiences in applying motor learning principles to the treatment of stuttering, apraxia, and other speech disorders."
hmmmm. Rhonda, any thoughts?
===== Lisa Geng President CHERAB Foundation Communication Help, Education, Research, Apraxia Base http://www.apraxia.cc http://groups.yahoo.com/group/childrensapraxianet908-626-KIDS 732-871-6013 VM "Help give our cherubs a voice and a smile"
Subject: Look Who's Talking Now
Look Who's Talking Now: Fish oil capsules help children with speech disorders find their voices
A simple fish oil supplement may be the key to dramatically unlock the voices of children with speech and language disorders.
That's the conclusion of a group of scientists who reviewed a study of nineteen youngsters suffering from various speech problems. The children, ranging in age from two and a half years to eight years, were given a fish oil supplement containing a mixture of omega-3 and omega-6 essential fatty acids (EFAs). Speech-language pathologists who monitored the children reported significant improvements within just a few weeks. The improvements were noted not only in the children's ability to talk, but also in their behavior, ability to focus, and in maintaining eye contact.
Now the scientists, brought together by the CHERAB Foundation, a major nonprofit group for children with speech disorders, are calling for a double blind, placebo-controlled clinical trial to validate these initial findings.
"The results were dramatic," says developmental pediatrician Marilyn C. Agin, M.D., medical director of the New Jersey-based foundation, who also reported similar results in ten anecdotal cases under her care. "They strongly suggest that EFA supplementation combined with speech and occupational therapy could become the treatment of choice in multifaceted communication disorders -including autism and apraxia."
Until now children with severe speech disorders such as apraxia, a neurologically-based condition, have required years of intensive one- on-one therapy-often with painfully slow progress. "But now, with EFA supplementation together with therapy, the future for these children may be much brighter-and sooner rather than later," says Lori L. Roth, M.S., CCC/SLP, a speech pathologist with the CHERAB foundation.
The amazing potential of EFA supplementation came to light when the nonprofit group's president, Lisa Geng, used it with her non-verbal three-year-old son, Tanner. After just three weeks his vocabulary exploded. "It was the breakthrough we had been praying for. It was incredible," says Lisa.
Why does this supplementation look promising? Experts believe that the speech disorders are the result of a breakdown in communication between the brain and the muscles in the larynx, mouth, tongue and jaw that have to work together to produce speech. Essential fatty acids, especially the omega-3 DHA and the omega-6 ARA, are highly necessary for brain development. Most children obtain them-during the most critical times of brain development-directly from their mothers while they are still in the womb and subsequently while being breast- fed. Any deficiency can result in permanent neurodevelopmental deficits in the growing infant.
"Therefore under one scenario, essential fatty acid supplementation in neurodevelopmental speech disorders could correct a specific deficit in the speech center of the central nervous system. Under a different scenario, EFA supplementation could enhance the functioning of proteins expressed by defective genes involved in speech and language production" says Robert Katz, Ph.D., CHERAB's director of EFA research.
The panel of experts who reviewed the study included scientists from the NIH, Johns Hopkins University, Kennedy Krieger Institute, University of Kansas, and Oxford University, England.
For more information contact: CHERAB FOUNDATION COMMUNICATION HELP, EDUCATION, RESEARCH, APRAXIA BASE 657 Valley Road Box 339 Gillette, NJ 07933, U.S.A. Tel.: 908-626-KIDS; VM: 732-871-6013; Web site http://www.apraxia.cc Grouplist http://groups.yahoo.com/group/childrensapraxianet
From: Rhonda Jacobson Cherry
I have a daughter who is 4 yrs. 7 mos. old, with developmental apraxia of speech. For the past 7 months, she has been disfluent, off and on. This seems to be related to sudden growth spurts in her spoken vocabulary, perhaps related to the "capacities/demands model" of fluency? Has anyone else documented "apraxic stuttering"? If so, is this a transient phase, or something that will remain with her?
Looking forward to your opinions and .
From: John Kagie
Judy, thank you very much for all your efforts to facilitate this online conference. It has been most interesting and inspiring. Keep up the good work, John
From: Steve Hood
To all of you still reading.
The hour gets late and the 2001 ISAD will soon be history. I would be remiss if I did not:
1) Thank Judy Kuster for her tireless efforts in pulling this off. I know she has spent countless hours working with the authors of the papers prior to the conference, as well as during it. She has managed the overall operation of ISAD, and also handled the day-to-day glitches that are an inevitable part of such a massive undertaking. Without your care and detail there would be no ISAD
2) Thank the authors of papers. Although I did not respsond to all of them, I read them. I anticipate some "off line communications" with some of you in future months. Without your papers there would be no ISAD.
3) Thank those of you who wrote to post or ask questions. I am pleased to see that we have received posts from parents, clinicians, faculty, clinical supervisors, students, and most importantly, from persons who stutter. Without all of you, there be no ISAD.
The conference will remain on line after today. But during these final few hours that the conference is on line and interactive, I just want to thank everyone for contributing to the successes that have been achieved.
Cheers, and best wishes, to all.