Saturday, March 26, 2011

Want to hear from you!

Now I'm not so full of myself as to think you are all waiting with baited breath for my next blog post -- but did want to check in and let you know that between "real" work (meaning $$) and trying to pound out the book to be published this spring/early summer -- I think my blogging will take a brief hiatus...but would love to hear from anyone interested in "guest" blogging. Without trying to be too directive, I will make some suggestions - but feel free to write about whatever moves you. If you are a parent, share a story about how you keep your child talking and keep talking fun. If you're a speech therapist, share a story about your approach the speech therapy that focuses on building trust and keeping them talking rather than minimizing speech errors. If you are an adult or teen who stutters -- your perspective is highly valued and I'd love to hear from you!

Thanks again for all of your support, encouraging words, and wonderful insights... hope to meet many of you this summer at FRIENDS in DC (for sure), and hopefully NSA in Forth Worth, if schedule permits...

Doreen (Dori) Lenz Holte

Friday, March 11, 2011

“Although most experts agree…” – really? REALLY??

In 2009, it was reported in a survey conducted by the research committee of the National Stuttering Association (NSA) that:

"Although most experts agree that early therapy helps preschool children overcome stuttering, 30% of parents were advised by a pediatrician or speech therapist to defer speech therapy until the child was older."

As a parent of a 14-year old who stutters, and a consumer of these services, I challenge the NSA research committee to prove to me that “most experts agree” on this matter. What I have found, after five years of my own research, is that this field is wrought with disagreement, controversy, and inconclusive evidence in almost every aspect of stuttering and therapy for those who stutter – especially children!

At the same time, I agree that parents, when concerned about their child’s speech, should not be sent away to wait it out, even if the child doesn’t exhibit stuttering behaviors while in the therapist’s office. There are many wonderful ways a parent can have their concerns addressed effectively and respectfully without putting the child into therapy (see previous blog postings for some suggestions…). In other words, it’s the parents who should be in therapy – to help them learn ways to keep their child talking and keep the pressure off of speech production. What’s the point of doing this if chances are pretty good that the child will “grow out of it?” Why not just wait it out? Three reasons:

1. First off, the indirect therapy I refer to will do no harm. In fact, creating an environment where kids feel safe, supported, and free to speak out is wonderful for any child, not just those who are dealing with communication challenges.

2. Secondly, if the stuttering behavior persists, the parents are far better prepared to keep that behavior at a minimum and also understand how to lessen anxiety around speaking.

3. Lastly, when parents are told to “just ignore it” and then the stuttering behavior persists, parents feel a tremendous amount of guilt and even anger -- guilt because they were not more persistent, and anger because their concerns were ignored by the speech therapist.

There is an assumption here that if the issue hadn’t been ignored, there would have been better outcomes. This assumption is continually nourished by misleading and unfounded comments that permeate literature directed at parents, such as that in the NSA survey. Dr. Barry Guitar, out of the University of Vermont, is a recognized expert in research and treatment of stuttering and is also a person who stutters. He sums it up best when he says

“Stuttering therapy is an obscure blend of techniques, applied to a baffling problem, with frequent failure. Only specialists should be allowed to do this.”

Agreement by the experts in all areas of this “baffling problem” is extremely rare. They don’t agree on how to define stuttering, they don’t agree on what the outcomes should be for stuttering therapy, and the research that does exist is extremely limited and inconclusive. There is also much discussion and concern about the risks of current therapy approaches by many of those experts. Shame, selective mutism, and lowered self-esteem, and general disengagement are just a few of those risks. It is unfair and extremely misleading to both parents and speech therapists to continue to exhibit this fa├žade of certainty and confidence around the treatment options available for children who stutter. The time to accept this reality and to “first do no harm” is way past due, and I hope that many professionals and the organizations who support them will rise to the occasion.

Keep them talking and keep talking fun! Thank you for your ongoing interest and support.

Doreen Lenz Holte

Sunday, March 6, 2011

Guest blogger reminds us of a voice from the past...

Dori -
Just wanted to thank you for undertaking the project of writing a book and blog re: a parents perspective in educating themselves for the purpose of choosing a therapy approach for a child who stutters. It is - and will be - a tremendous resource for parents when choosing a therapist and therapy approach for the youngster who stutters. I believe that a child’s best hope is their parents, and a parent’s best hope is a good professional. Your sharing of the journey your family has taken offers deep and universal insight into the therapy decision-making process.

I can't help but think how a book and blog such as yours would have been of invaluable help to my parents as they searched for speech therapy help for me 54 years ago. It's sometimes painful to look back on my stuttering - and all its therapies - and the negative toll it took - not only on me, but on my mom, dad, brothers and sisters as well. Parents need to be educated and motivated in being actively involved in the decision making processes of therapy.

As I read your blog and some of the responses individuals have made, I am moved to share the following by the late Dr. William Perkins published in NSA’s "Letting Go" publication in the late 1990’s. Dr. William Perkins, a recipient of the prestigious Honors of the American Speech & Hearing Association and receiver of the Distinguished Emeritus Award at USC for his 50 years of stuttering research, published these comments after his retirement:

"I assumed…that if we could keep our people fluent long enough, eventually their fluency skills would become habitual. Not once did that ever happen."

"Failure to maintain fluency was the clearest evidence of dissatisfaction as speakers gave up hope that this therapy would ever lead to natural speech free of stuttering."

"The blame for failed therapy lay in the professional’s failure to recognize that fluency is not the proper objective of therapy."

"The speaker is helpless to prevent involuntary blockage."

"Expecting to speak naturally with voluntarily controlled fluency is like pasting feathers to your arms and expecting to fly."

"My colleagues and I have been to blame for the fluency failures."

"Voluntarily controlled fluency is the wrong scientific objective, to say noting of the wrong treatment objective."

"The very existence of self-help groups speaks to the failure of professional therapy to address the needs of those who stutter which is not about making speech acceptable to the listener. It’s about coping with the feelings that create stuttering and understanding how they offer a path to full recovery."

"If science requires objectifying stutterers to the extent of divesting them of their subjective experience because it cannot be measured traditionally by what is readily observed," he said, "then science is the loser."

Perkins was a GIANT in the field of both research and therapy for stuttering. His insights seem to fall on deaf ears in the professional ranks; but they could and should influence parents of children who stutter in deciding which path to take." Look forward to your book coming out! Keep sharing with parents on the VOICEUNEARTHED blog!!!

One Who Stutters Still

Tuesday, March 1, 2011

Short-term goals lead to long-term disaster…

First off, I am so thrilled to have shared in the King’s journey and all the Oscars that went along with it. When David Seidler won, Eli yelled out "that means I won too!" He didn’t stop grinning for hours…so congratulations to all of you out there who stutter and special thanks to David Seidler and the amazing actors, director, producers, etc… who so beautifully raised the awareness level and understanding around this mysterious condition. We are forever grateful! (I know that someone who is reading this is connected with Mr. Seidler – and I would love it if you could forward that message on to him! Thank you.)

Now for today’s message…My mission is to help both parents and speech therapists understand the risks that we take when we imbue children with the expectation of using speech tools meant to make talking easier and to help them make fewer speech errors. The understanding is that this practice stems from evidence-based research. The professional entities supporting speech therapists and the speech therapists themselves say that they are "ethically obliged" to abide by what is considered "best practice" stemming from evidence-based research.

At first blush, the logic behind this approach seemed solid and we enthusiastically embraced it as the primary focus of Eli’s therapy. As his struggle progressed from mild to moderate to severe, I began to want a better understanding as to where this approach came from and why it wasn't working for Eli. As I started my research, the solid logic I saw at first blush began to liquefy. By the time I finished researching and moved on to writing the book (due out this spring), that solid logic not only liquefied, but completely evaporated. So how did this come to be considered "best practice?" Here is what happens (keep in mind, I have been writing grants for the past 20 years):

- Researchers depend on grants for funding.

- Entities that give out these grants demand stated goals with measurable results.

- If the long-term goal is for a person to stutter less or not at all, the obvious behavior to track and measure is percent of syllables stuttered (%SS).

- %SS is a relatively easy thing to measure and relatively easy to achieve – in the short run.

- Continued funding is dependent on short-term reports of achieved measurable results.

Our quest for fewer %SS has inadvertently put us on a path strewn with risks that far outweigh anything that can be possibly gained from this focus. My research also uncovered the fact that the vast majority of evidence is labeled "preliminary, emerging, promising, etc…" because:

- The research has been done on adults, not on children.

- The sample size of those being studied is deemed statistically insignificant.

- The research is most often limited to pre-treatment and immediate post-treatment measures, which tells us nothing about the subjects’ ability to maintain their effort in the long-run. In fact,

- Research that has reached beyond immediate post-treatment measures has conveyed that most subjects who showed gains reverted back to their previous level of disfluencies, or became even more disfluent.

There are other therapy components not focused on %SS, but the focus on using speech tools far outweighs other components because it is seductively and misleadingly successful and easy to measure. Eli was able to perform well in the clinic setting (I was continually told that he was doing great) and so we assumed that he just needed to practice more. But what else was going on as we all feverishly focused on %SS?

- He increasingly choose silence over speaking up

- He acknowledges that he felt shame and embarrassment because he was not able to do what was expected of him.

- His life was permeated with a sense of failure when he was unable to sustain the effort he has put forth in the clinic setting.

- He was unable to genuinely engage in the world around him because he was so fearful, worried, and trying so hard not to stutter.

- His fear and shame became so encompassing that he grew increasingly depressed and withdrawn and even experienced debilitating sleep issues.

- When he did speak, he had started to twist his chin to his shoulder and growl in order to get a word out.

- In the short-run (the clinic setting) he was able to lower his %SS, but in the long run, his stuttering behavior went from mild to moderate to severe.

When he was nine, we stopped focusing on getting him to change the moment of stutter and started focusing energy on keeping him talking and keeping talking fun (see previous posts for more detail). It was a covert operation - he thought the speech therapist was some old guy with a bunch of horses and a bum knee, and yet his struggle started to melt away. Within three months, the chin to shoulder twist was gone. Over the period of a couple of years, the layers of anxiety he had amassed started to melt away. He began talking more, engaging more, and slowly became more self-confident.

Edward Conture, professor and director of graduate studies, Department of Hearing and Speech Sciences, Vanderbilt University, asks a profound question: "Does the life of an individual who stutters become easier, more enjoyable, and so forth as a result of our treatments?"* This is a very good question -- in fact I think it is the most important question that can be asked. The stated goal for reserach and practice should be to make the person who stutters life easier and more enjoyable -- because what's the point if it doesn't? (Please remember that I am speaking for children, not for adults, who stutter.)

Today, at age 14, Eli still stutters, but as we keep our eye on the big picture instead of the hatch marks of %SS, his struggle continues to fade. His life is more enjoyable and he is happier. We don’t know where it will end up, but we are grateful we got him back. Thanks for your interest. Keep them talking and keep talking fun!

*Stuttering Research and Practice: Bridging the Gap