Thursday, January 06, 2011

Is your kid still stuttering after Lidcombe?

I want to hear from parents and clinicians who treated their child with Lidcombe and the child is still stuttering. Only a few cases are enough to show that Lidcombe is not highly effective, because they will immediately drag a perfect 100% recovery down kid by kid and it's not far to go until 80% natural recovery. Researchers should search for those kids, because this trial does not need as many participants to get to statistical significance.

Here is one kid I found on STUTT-L:
We did not have a strongly positive experience with the Lidcombe, but did try it for several months with my little boy, Steven, who had just turned 4 (he's now 4 1/2). Our little boy seemed to do well with it for about the first 6 weeks, but then after that began prolongations, blocking, and ingressive breathing. I knew those were not good signs, but did not get any assistance from Steven's clinician when I requested 'tools' to help him with these struggles. I have come away thinking Lidcombe is possibly helpful for children with mild stuttering.
Anyway, our clinician calculated the %'s and we did one rating for a full 24 hours. We just averaged his score---meaning we considered the best and then also the worst scores for the 24 hours.
We have many mixed feelings about Lidcombe (as I think many other parents and clinicians do, too). We are now pursuing a more traditional approach--would be happy to talk with you more about it if you would like.


Anonymous said...

"I'd already been looking into other varieties of speech therapy. I'd heard some good things, and some bad, about the Lidcombe Program for preschoolers who stutter. Through a worldwide support group for parents of children who stutter, I fortuitously met a local mom whose daughter went through the Lidcombe Program and now stutters very little. Her therapist is here, in Menlo Park. I talked to her last week and we went for our first Lidcombe appointment today.

I liked the therapist, Mercedes, but the appointment wasn't exactly encouraging. She talked to us about the Lidcombe program and what we would need to do to make it work. We already knew this program included a lot of parental involvement, so it was mostly old news. Smunch played with Play Doh quietly while we talked about him. Then she interacted with him for a little while and went back to talking to us.

The most alarming part of the meeting was how her suggested approach changed after talking to Smunch. There was a significant feeling of "holy crap, this is BAD" hanging in the air. She started talking about how some of his coping strategies would make for clinical challenges. She asked us to rate the stuttering on a scale of 1 to 10. We agreed that, for him, it was a 7 or 8. "Really?" she said. "I would have said 9 or even 10." This is a woman who stutters (although I couldn't tell) and comes from a long line of stutterers herself.

We're to start his therapy by getting him to repeat one syllable words without stuttering. For a kid who loves to talk and speaks in long, complex sentences, this is going to be torture. Of course, trying to interpret his long sentences is also torture right now. There is no win here.

I got home and called his previous therapist's office to cancel our appointments from here on out. Instead of feeling relieved to have a new avenue to pursue, I felt sad. It's so hard to find good people who take a real interest in your child. When you do, they sort of become an extension of your family...the team working to help your child have a normal childhood. It was like breaking up with a boyfriend I still cared about just because I knew the relationship wasn't going anywhere. Awful.

Although many of our friends have said that Smuch's speech doesn't sound bad, we knew it was a big problem. We'd already had speech therapists confirm that suspicion, but there's nothing nice about having it confirmed again and again. And it's hard to think back to the time, just a little over a year ago, when this wasn't even a problem. It's like a monster came and latched onto our little boy and won't let him go. "

Well you see, I don't think that is always the case, I have done the Lidcombe program with two of my boys. Lidcombe uses the parent to do the therapy with weekly help and guidance from a therapist. Lidcombe worked for one, and not the other. However, I'm not working with a therapist for the other child, and again, I'm the main therapist for him, with regular consultation with her, and it's been very successful.

Anonymous said...

“Thomas not only stutters but is delayed in his general speech development so a bit trickier.
HC - Thomas did the Lidcombe with his SLT for about 6 months last year. The SLT says it works for about 60% of kids...typically T has 'failed' the Lidcombe and is moving on to a Time Out approach - don't talk for count of 5 once dysfluency starts and then start again. Interestingly (he's only had 1 session of this) the pause seems to be producing longer sentences than his usual - adding to my theory it's more of a word retrieval and processing issue. So I guess different 'causes' of the stuttering have different ways of tackling it.
Eleanor, Mummy to -
William, Nicholas and Thomas”

“C failed with Lidcombe too Eleanor, badly. Stopped talking all together. It worked for J though and the stats still make it the best approach to use as first try.

C had really good success with a program that a British therapist at Start used, but then she went back to Britain
I wouldn't mind a PM conversation about the other though, as C is going through a bad patch again and has asked me to get therapy for him, so I'm bracing myself for more talking to therapists that know less than me on this one particular issue.
Sandra, The new fashionista; homeschooling, vegetable growing, baker of bread and wanna be locavorian.
Mum of DS's J 16yrs, C 11yrs, DD M 7yrs “

Anonymous said...

Here are some research results which provide some data on the fact that the Lidcombe programme is not 100% effective in "curing" stuttering.

D. Lillian - Thesis
“it is apparent that most pre-treatment %SS scores were substantially higher than 4% and virtually all post-treatment scores were at or below 1% except for participant 9 who presented with an extremely high %SS pre-treatment i.e. 30% and compared to the 30% obtained a low %SS post-treatment i.e. 4%.”
“These gains were retained for all children post-treatment except for participants 1, 2, 6 and 8 with participant 8’s %SS increasing by only 0.5%SS. However, even though treatment appeared to be less effective for participants 1, 2 and 6, the %SS still remained lower than pre-treatment scores.”

Conference presentation.
“Eleven of the 15 children reached a zero level of stuttering: the other four were below 4%SS and were Mild or Very Mild on the SSI-3.”

Anonymous said...

You're going to have a biased sample. If you want to determine the effectiveness rate, you'd need to ask for parents of children who've been treated with Lidcombe Program - regardless of their outcome. THEN see how many are still stuttering.
At the moment your methodology is like saying you want to hear from people who've had a recurrence of cancer, after a course of chemotherapy, and concluding that chemotherapy is an ineffective treatment.

Unknown said...

Hi Tom,
Please disregard my previous post. I had thought no one else had responded to your post.

Anonymous said...

Hi, my son has been on the Lidcombe therapy for 3 months seeing a SLP almost every week in that time. We saw a big improvement for the first few weeks but after that his stutter pattern has returned to how it was before, some days really bad and then a gradual decrease to hardly any problems and then over the next week it becomes worse again. It seems now the therapist is at a loss at to what to do and seems convinced something is happening at home to make it keep getting worse and then better which is insulting. She has blamed my husband because hes in the army and works away alot, then it was my eldest son because he left for uni, nursery, and now she seems to be pointing the finger at me, saying he has to much of an attachment to me (surely if this was the case I wouldnt be able to leave him at nursery). Im so frustrated with the whole experience and feel were no further towards helping him that we were before we started the course. I hope other people have a better and more productive experince from this course. I feel it is more suited for children with less severe stutters xx

Anonymous said...

Both my children completed the Lidcombe program and they both had different reactions and outcomes. My son thrived during Lidcombe. He went from extreme dysfluency to no dysfluency by the time we finished. He incorporated the techniques taught and did very well for a few years. However, 3 years later he started stuttering again. It's been a gradual progression to moderate stuttering and we're now seeking speech therapy again (he's 9 now). It breaks my heart to see them struggle and I was so hopeful that the program would have longer term effects. We also did the maintenance program for 2.5 years.

My daughter on the other hand didn't cooperate with the Lidcombe program at all. We tried different techniques over a period of 2 years. We finally decided to give her a long break and during that time she stopped. I notice that she often takes a "tummy breath" before speaking and is very cautious about speaking slowly and clearly.

Anonymous said...

The Lidcombe Program for my son was a life changing experience. He started stuttering at 2 years 8 months and 17 months later had a very severe stammer with 27% of syllables stuttered and severity rating 9 at one of his early assessments. At his most severe he would only talk facing away from me and he asked me, with lots of stuttering, 'Why can't I talk well?' It was very upsetting to see and hear. After trying other approaches we started the Lidcombe Program when he was 4 years old. It was hard work and took a lot of dedication on my part as I was the one doing the treatment with him; however, to be able to help your child become a stutter free and confident speaker is one of the best gifts a mother can give her child. He is now 10 years 3 months old and stutter free and you would never know he had had a stammer. It is important that the approach is carried out as described in the LP manual, to make sure your child has the best chance at fluency. It really did change my son's life.

Tom Weidig said...

@Last Anonym: Many children are recovering spontaneously (80%) so your statement "however, to be able to help your child become a stutter free and confident speaker is one of the best gifts a mother can give her child." is only your interpretation of what happened. It could also well be that he would have recovered anyway.

I know many parents who have been equally dedicated and their children are still stuttering. And they blame themselves for not having done it right.

Maybe they are not be blamed and you are not be congratulated, but it was just a thing of nature and destiny whose brain was able to develop into a fluent brain.

Anonymous said...

In response to your comments, my experience with my son was that after 17 months of stuttering there were no signs of natural recovery and in fact severity had increased. We had plotted his severity ratings for over a year before starting Lidcombe with no sign of natural recovery. When we started Lidcombe there was a gradual decrease over time of syllables stuttered and severity ratings decreased until he was stutter free. We will never know for sure whether it was Lidcombe or natural recovery that helped me him become stutter free, but being a boy, having stuttered for 17 months with no signs of improvement and having a family history of stuttering, the odds were against him becoming fluent without help. I felt I had to post our experience to give a more balanced view and to help other parents decide if it may be an approach they would like to explore with their children. Reading several negative experiences doesn't give a balanced view and could potentially put parents off trying it with their child. I am not saying Lidcombe works for every child and therefore any parent who has tried it with their child without success should of course not feel guilty at all and any parent who has had success with it shouldn't be congratulated! As a parent you just try to do the best for your child with the information that you have and our experience was a very positive one.

Tom Weidig said...

>> my experience with my son was that after 17 months of stuttering there were no signs of natural recovery and in fact severity had increased.

One theory is that many kids have a temporary problem in the brain because speaking fluently requires several brain regions to work together and they might have delays in some of these regions. So you would expect it to get worse as they react to stuttering making it even worse. But then all of the sudden the delayed regions are "on-line" and fluency quickly comes.

>> I felt I had to post our experience to give a more balanced view

You are welcome to post your experiences. You have the experience that you have. I only pointed out that, while I believe your experience, I am sceptical that your interpretation "it was Lidcombe" can be proven in any way. That's why one needs to do large scale studies over a long period of time.

>> Reading several negative experiences doesn't give a balanced view and could potentially put parents off trying it with their child.

As we know that many children recover naturally, even if Lidcome is not helping, the negative experiences should not be the norm, but rather your positive experience. So a balanced view must show more positive experiences.

Anonymous said...

Thanks for taking the time to reply to my comments. I would just like to say that fluency didn't come quickly. It was a very gradual process after starting Lidcombe and in fact it took a year until he was completely stutter free and ready to start Stage 2. There was a gradual reduction in the syllables stuttered and severity ratings after starting Lidcombe which wasn't the case in the 17 months before treatment. I know 12 months is a lot longer than average but his stutter was very severe, and the manual says treatment takes longer with severe cases. My background is that I trained as a Speech and Language Therapist in the late 1980s but had had a career break and so when my son began to stutter I researched developments in treatment since my training; that is when I came across Lidcombe. In the 17 months prior to Lidcombe we did try other approaches (reducing demands etc) but without success. After waiting for natural recovery for over a year but with no change I attended the Lidcombe Program training course and started treatment with my son two months later; that is when his speaking very gradually became more fluent. It was a positive experience for my son and he occasionally asks if I remember when we did smooth talking. He once heard a little boy stuttering and afterwards, when we were on our own, he asked if I had heard the little boy's bumpy talking and he said he just needed to smooth it out. I know that this a rather simplistic way of looking at it and in fact most of the treatment is focused on giving contingencies for the smooth talking, but those were his words and he obviously felt that that would help. I must just say again that I'm not saying it will work like that for every child, but I'm just trying to give our experience.
The other thing I wanted to mention is that in some cases the efficacy of treatment may be affected by how well the SLT guides the treatment. I have a friend whose son had a stutter and she thought she was doing Lidcombe with him, with the guidance of a qualified SLT. After I had read the manual and done the course it was clear that what she was receiving was nothing like the manuaised version of Lidcombe and so couldn't in fact be called Lidcombe. Unfortunately by this time he was too old to start the approach again properly, so had missed the window of opportunity. He is 14 and still has a stammer. Without actual knowledge of the Lidcombe Program that mother would have said Lidcombe hadn't worked, but sadly she realised too late that they hadn't had Lidcombe. At the moment we don't know exactly which components of the program are needed for it to be effective, but until we know more, I think it is really important that the manuaised version is followed as closely as possible to give every child the best chance at fluency.

Anonymous said...

Hello Tom,
I responded yesterday to your comments and would be grateful if you could post them. I know you have a different opinion to mine but I think it would be good to be open about the comments people post so other view points are reflected. We both obviously have an interest in stuttering from personal experience and so both feel quite passionately about it. I think from your posts you have already made up your mind on Lidcombe, but it is good to keep an open mind. You never know, it might really work!

Tom Weidig said...

I have a spam control which becomes active after x days and so I need to personally approve comments. I only do that from time to time. I never refuse comments even those that say that I am an idiot! ;-)

Tom Weidig said...

It of course helps if you write your real name or at least a user name to know who wrote which comment.

LeanneK said...

Hi we have been asked by my slt to try lidcome with my 35 month old and wondered if you'd be so kind as to give me any advice?

Anonymous said...

Hi, my son is now 6 and we have been doing Lidcombe since he was 3 and a half. In the beginning there was alot of inconsistencies due to dad not wanting to do the therapy when my son was with him but for the last 18months at least he has had very consistent therapy due to me going to his dads to do it with him. In the last month he has gone backwards dramatically and now his dad is suggesting we give him a break for a couple of months and see if he sorts it out himself. I'm feeling like an absolute failure at the moment because I don't share this burden with anybody and feel like his decline in progress is my fault. I asked my husband tonight what he thought and he too thinks a break might be good. I don't know what to do I feel very lost. Any advice???