Wednesday, December 21, 2011

Happy Holidays To All

This past two weeks got a little crazy - husband ended up in the hospital with pneumonia and is still in recovery mode. I'm now catching up with shopping, cleaning, wrapping, and meal-planning for the upcoming Christmas weekend. I am grateful for my wonderful family, amazing friends, and the opportunity provided by today's technology to connect with people like you.

Thank you all for your interest and ongoing support when it comes to treating children who stutter. We must find a better way focused on keeping them talking instead of "managing" their speech! The journey continues... watch for a new posting next week!

Best,
Doreen/Dori Lenz Holte

Wednesday, December 7, 2011

Join in the "spirited debate" over stuttering therapy for children.

Over the next several weeks I will be posting a series of commentaries on the opinions conveyed in a publication excerpt authored by a leader in the field of speech therapy for children who stutter. She forwarded the excerpt to me in reaction to my book, Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter. The focus is on elements she believes influence therapy outcomes for children. I will not reveal the author’s identity, as my intent is to challenge the ideas, not the person.

The excerpt begins with the question “what elements, aside from those specific to a particular treatment approach, might influence a child’s responsiveness to stuttering therapy.” Taking the “treatment approach” out of the mix is like exploring a child’s response to shoes that are too small without considering the option of taking off the shoes. It could very well be that the child is sometimes uncooperative or ill-behaved, but let’s start with taking off the shoes!

Terms including “successful therapy” and “positive outcomes” are used throughout the excerpt but never defined. This is an issue I raise in my book – even the experts cannot agree on how to define “success.” Although most often defined as fewer speech errors, the easiest way for a child to make fewer speech errors is to not talk. Is this a “successful” outcome?

The article relates the reluctant behavior of children participating in therapy to problems with “temperament, personality, lack of control, and negative self-perception.” A parent who chooses to remove a child from therapy because they feel the therapy is too difficult or not relevant is “incongruent,” “Incongruent” is defined as an imbalance between intellect and emotion.

Parents are called upon to shift their role from “all powerful fixer” to “ally and advocate.” In reality, too often the therapist becomes the “all powerful fixer” armed with their tool box of speech techniques. Apparently a good parent “ally and advocate” should continue therapy even if they believe that the therapy is too difficult or not relevant to their child’s life. This begs the question -- whose "ally and advocate" has the parent really become?

The publication laments the lack of research that focuses on anything beyond pre- and post-treatment comparisons of measure of speech fluency – a point in which I heartily agree – and I feel that parents have the right to understand. Why does the field of stuttering therapy so enthusiastically promote therapies on the basis of research they openly acknowledge is lacking, yet disregard the parent’s perspective as emotionally and intellectually imbalanced?

Reference is made to the “spirited debate” that continues in this field – another point I feel it is important for parents to understand. Parents can best support their children by familiarizing themselves with all sides of the debate and becoming part of the debate. Voice Unearthed: Hope, Help, and a Wake-Up Call is the first book written about this subject from the parent’s perspective and is available at www.voiceunearthed.com. Ask your local library to carry the book on their shelves so all parents can better understand this debate and the concerns behind today’s therapy for children who stutter.

Thank you for your ongoing interest. Let's keep them talking!

Best,
Doreen Lenz Holte

Monday, August 22, 2011

What I mean by "real options."

In my recent book, "Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter," I challenge support organizations to provide "real" options to the parents of school-aged children who are stuttering. I have been asked to clarify what I mean by "real options."

Sunday, July 31, 2011

They do not need fixing….really??

One statement I hear repeatedly is that “our children are NOT broken and do NOT need fixing!” While I do believe that acceptance (both on the listeners’ and the child’s part) is key to keeping the stuttering behavior from escalating, there is something about this statement that is unsettling. It sets up a false dichotomy – either they are broken or they are not broken - either they need fixing or they do not need fixing. In reality, I think the truth lies somewhere in between.

Tuesday, July 26, 2011

Just back from D.C. and the "Friends: Association of Young People Who Stutter" Convention. We are exhausted and happy to have met so many wonderful people. It was especially fun to put faces with the names of some of you who follow my blog!


I enjoyed watching Dr. Phil and Uri Schnieder’s "Going with the Flow" documentary (for the second time). If you haven’t seen it – go to http://www.schneiderspeech.com/ – well worth the trip! Dr. Schnieder also gave a parent workshop on listening. I appreciated his message on the importance of letting our kids who stutter know we will make whatever time they need to listen to what they have to say. Reflecting back on our own journey, I had some thoughts on the same subject.

When Eli’s older twin brothers spoke up, most often I would continue folding the clothes or drying the pans or sweeping the floor. I would nod my head, give a yeah or nay when required, and quite possibly not even make eye contact throughout the entire exchange. When Eli spoke, I often dropped everything, knelt down to his eye-level, made good eye contact, and nodded my head dutifully as he spoke. You probably see where this is heading...


When Eli was older, he informed me that my intense listening sometimes made him uncomfortable and I suspect that my distracted listening habits paid short shrift to my older two boys. The trick was finding a happy medium. I had to become an equal opportunity listener. Not every exchange necessitated an intense level of attention for any of my kids --and I could do a far better job of listening, in general, for all of my kids! Just thought I would share that perspective.


Thanks again to all who put the FRIENDS convention together and to all who made it so welcoming. Hope your travels home were uneventful and I look forward to staying in touch!


Best,
Doreen (Dori) Lenz Holte

Tuesday, July 5, 2011

You Can Now Order Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter

I am excited to announce that after six years in the works -- "Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter" can now be ordered online.

Go to www.voiceunearthed.com to learn about this book project and to place your order. The book is being printed this week and shipping will begin around July 14th. I have kept the price as low ($14.95 plus shipping and handling) to keep it affordable for families and students.

Feel free to forward this opportunity on to friends, family, collegues - anyone you know who is or may become involved with a child who stutters. Thank you so much for your ongoing interest.

Hopefully Eli and I will meet some of you in a few weeks at the FRIENDS conference in D.C. For those of you traveling to the NSA conference this week in Fort Worth - enjoy and safe travels -- wish we could be there too.

Best,
Doreen (Dori) Lenz Holte

Wednesday, June 1, 2011

To School or Not To School?

Final edits on my book "Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter" are done and with the layout person. It should be available by the end of the month! So back to blogging. This blog topic has been inspired by a parent's question on the NSA Parents listserve...


To School or Not To School?

For the sake of transparency - I'll tell you up front that we have homeschooled all three of our boys and that decision had nothing to do with Eli's speech struggles. He was a wee babe when we started homeschooling his older brothers. They are now 19 and doing great. I am very grateful for having had that choice but I recognize that not every parent has that option, or would choose it even if they did. For those who include it in their list of possibilities - here is my perspective...

Dr. Jerry Halvorson states:

"Allow every stutterer to talk, talk, talk… no matter age, severity or situation. The more the better. The less inhibition the better. The more initiations the better. The more verbal reactions, the better, the more socialization the better, and infinitum. Release his speech. Allow him to speak as much as is physically, emotionally, and cognitively possible – and do so without forcing."

The more you can have your child in an environment that allows this level of freedom and inhibition, the greater likelihood that your child’s speech tension will melt away, or at least, not get worse. Unfortunately, this is pretty much in contrast to the classroom environment, where kids spend most of their childhood years. In the classroom:

- Acceptable talking is most often in response to questions designed to assess performance and comprehension, adding pressure and layers of anxiety around speaking.

- Children are expected to talk in front of large groups and the content of their speech is continually being assessed.

- Uninhibited, spontaneous talking is highly discouraged.

The best teachers in the world cannot get around these classroom management parameters – and our classrooms are only getting bigger.

Today there are many exciting alternatives available from home schooling to free online public schools to home school cooperatives. I would strongly recommend that parents with children experiencing any type of communication apprehension consider and research these options.

Does this mean your child will sit at home and never have to speak to anyone outside of the immediate family? Absolutely not. Options to the brick and mortar public schools are thriving and there are many families out there to connect with for social experiences and academic events. There are also community options (4H, Scouts, local theater, church, music, chess club, etc…) that can keep a family very busy and provide many safe and relaxed social experiences. These are wonderful choices for children who are stuttering because they will have more flexibility to pursue their interests, have less pressure and anxiety around speaking, and have far more freedom to talk, talk, talk.

My book talks more about how you can support your child in group settings, such as a classroom or club setting. I am happy to be a resource for anyone considering alternatives to the public school setting. Feel free to email me at voiceunearthed.gmail.com.

Best,
Doreen Lenz Holte

Wednesday, April 20, 2011

They can always quit the piano…

The (what I hope is) final draft of my upcoming book "Voice Unearthed" is with the editor and I’m back to my blog. Thanks for hanging in there with me.

The more a child practices piano, the better he becomes at it. The more a child practices math equations, the easier they are for him. Can’t we just continue on and say that the more a child practices speech techniques, the better he becomes at it and the easier they are for him?

How parents and speech therapists come to believe this is understandable. We spent about three years there, hook, line, and sinker. So why, over this period of time, did Eli’s struggle go from mild to moderate to severe?

"Action to decrease errors seems harmless, in fact, the right and common sense thing to do. But the damage caused by requiring perfect speech may cause a lifetime of speaking terror." Dr. Jerry Halvorson 1

Speech therapists and parents will insist that they don’t demand "perfect" speech from these kids. In fact, they continually tell them "it’s okay to stutter." Children simply do not have the developmental maturity to sort through these messages and keep them in perspective. What emotional complications are we risking when we imbue the expectations of decreasing speech errors by practicing speech techniques like Tigger talk, stretchy speech, turtle talk, bounces, stopping and starting over, and asking them to think about what they are going to say before they say it?

Think about a time you performed in front of an audience – whether it was playing piano, making a speech, acting on stage, or even making a toast at your sister’s wedding. Do you remember your heart racing, feeling light-headed, your mind clouding up with panic. Do you recall the embarrassment when you screwed up – the red face, the shame, the "beat yourself up" conversation you had in your mind afterwards? Recall one time when you experienced these feelings… and then imagine a child who stutters experiencing this every time, every single time, they try to talk and make a speech error. Making the error is difficult enough, but the pain is compounded by the idea that they have also failed to use those techniques that worked so well at the therapist’s office – because most often those techniques will fail them outside of the clinic setting. How often did I hear parents claim "He does so well when he’s with his therapist!" How often do I hear therapists claim success based on the performances they see in their offices. And yet, the National Stuttering Association survey given to NSA members reports an 85% relapse rate. Bill Murphy, Purdue University, states that:

"Once shame is present, it regenerates repeatedly by the child, even if the external stimulus (a parent inappropriately reminding the child to ‘use your techniques,’ or a classmate laughing) is no longer present…At some point, the speech failures and negative emotions become attached to the child’s concept of self. The self acquires the identity of failure, or at least in relationship to speaking skills." 3

We all tell our children it’s okay to stutter. If we keep the piano playing fun and the math equations doable, chances are pretty good that the child will more readily return to engage in those activities – and that’s only if they are motivated. Using speech techniques is neither fun nor doable for a child, nor are they motivated. They just want to hang with their friends, play shoot-em up games in the front yard, and be a kid. Children can always quit the piano and even the math problems -- the only way they can get away from talking is by being silent so it becomes even more important to keep them talking and keep it fun!

Best,
Doreen Lenz Holte

1. Halvorson, Jerry (2008). Regression Therapy for Stuttering, Page 2.
2. Murphy, Bill: A Preliminary Look at Shame, Guilt, and Stuttering. (Ratner, Nan Bernstein, Healey, E. Charles (1999). Stuttering Research and Practice: Bridging the Gap, Page 133)

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...

Best,
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 façade 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.

Best,
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!!!

Retz
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

Monday, February 21, 2011

How to get kids to crab and complain…

One of the toughest things I wrestled with, especially when Eli was younger, was getting him to tell me how he felt about his stuttering. It’s still not the easiest thing in the world, but when he was younger, it was next to impossible. If I was direct with him, he would make it clear he really didn’t want to talk about it. He was too smart to take the bait when I tried indirect methods. What was I doing wrong? Why was this so hard for both of us? Was it because he was a boy and boys just don’t talk about their feelings? It took our cowboy speech therapist guy to point out to me that he WAS expressing his feelings and I was shutting him down!

Turns out I had adopted a "work it out yourselves" approach honed to a tee when my first two boys were born about one minute apart. They were an even match so they didn’t need me as a referee. By the time Eli came along, 4 ½ years later, I had gotten pretty adept at deflecting sibling complaints and whining back to the source. Once Eli was old enough to contribute his own level of irritation to the mix and then flee to Mom for back-up, I stuck with my plan (or habit) of deflection. Most often I would be sitting at my desktop computer, pounding out literary works of art (or playing solitaire) when Eli would come up behind me in tears with something like "Maaaaaaaaaaaaaaaaaaaaaom, dey woooooooooooon’t le le le le le le le let me plah plah plah play Pooooooooookemon Ma Ma Master Traaaaaainer wif dem!"

My usual response would be "you go work it out with your brothers, dear," or if I was feeling really ambitious I’d bellow out "boys….let Eli play a little, okay?" I’ll admit, I was fortunate that they were all three gentle and kind boys, so disagreements usually resolved themselves quickly and peacefully, without violence or screaming. If not, I would have gotten up and shut the door.

You see, I grew up in a large family back in the days when the parents’ goal was to put a roof over your head, keep you fed and watered, and to watch TV in peace and quiet after long hours at work. Bickering between siblings was not tolerated in the presence of these over-worked, stressed-out adults. While not quite as disengaged and certainly not as overworked, my own parenting style was somewhat influenced by this hands-off approach. Hadn’t it been good for us to buck up?

During one trip to the ranch when I had brought all three boys, Dr. Halvorson brought out a ridiculous horse mask which was an instant hit. The bickering started and I expertly squelched the argument with my honed deflection skills – "if you’re going to argue, we’ll just put it away…" Dr. Halvorson made a mental note and brought this to my attention at our bi-weekly lunch meeting. He explained that if I wanted to hear how Eli felt about his stuttering, I needed to be willing to hear how Eli felt about other things – I needed to let him complain and whine. If he felt safe complaining about his brothers, he would eventually be more likely to feel safe complaining about his struggle with speaking. I still didn’t necessarily need to intervene, but I needed to be a better listener.

I never perceived whining and tattling as golden moments for expression and an opportunity to get a boy to talk about his feelings. And Dr. Halvorson’s advice wasn’t an instant fix. But over the years, Eli has become more comfortable with talking about his struggle, and I’ve become more intentional about taking advantage of those golden moments and becoming a better listener. Keep him complaining and keep it fun…

Best,
Doreen Lenz Holte

Monday, February 14, 2011

"Lighten Up Mom"

When Eli was around 12 years old, I asked him if he remembers being told by his therapists that "it was okay to stutter." He said no, he was never told that. He followed up with:

"I stopped talking as much because they said it was wrong."

I know for a fact he had been told "it’s okay to stutter" quite often by all of his therapists. I believe that he doesn’t remember because the real message he was getting through all the focus on changing how he talked far outweighed the thin ribbon of "it’s really okay" woven into his therapy. Most children simply do not have the maturity level to filter, to reason, to get beyond their desires to please adults and to fit in with the world around them.

This may even be harder for children who stutter. There has been much deliberation in the field of stuttering around the theory that people who stutter have higher perfectionistic tendencies than those who do not. Last week I focused on putting Eli "in charge" which followed postings on listening, eye contact, keeping them talking, and shift the focus. This week I’ll focus on making it "okay to mess up."

As I mentioned before, our "therapy" with the maverick cowboy, Dr. Jerry Halvorson, centered around having Eli visit his ranch and do ranch-like stuff. We would occasionally bring lunch with us, usually Subway sandwiches. As we all sat down around the table I would inevitably fall into my mothering role, saying things like "napkin, not your sleeve please," and "pick up that lettuce you’re strewing all over the floor," and "don’t make such a mess," and "put your plate in the garbage" and so on and so on.

One day Dr. Halvorson pulled me aside and said "you’ve got to lighten up Mom!" Now I don’t want to give the wrong impression, as my parenting reputation tends to be pretty laid back, (sometimes even comatose), but I could see his point. I had to let Eli mess things up a bit, had to let him know that it was okay to make a mess with his Subway sandwich, and it was also okay to make a mess of his talking by stuttering.

We are still working on melting away the anxiety that had been layered on with each long trip to speech therapy and each "special time," but I see the sense in beginning with lettuce strewn on the table, letting him use his sleeve as a napkin, and in his enthusiasm for getting out to feed the horses, forgetting to put his plate in the garbage. You’ve got to start somewhere… keep them talking and keep talking fun!

Happy Valentine’s Day to you and yours, and once again, thank you for your interest.

Doreen Lenz Holte

Monday, February 7, 2011

In all of his excitement, he forgot to stutter…

In my past blog posts I have focused on several things we did differently in order to decrease anxiety around Eli’s efforts to speak. These included:

- natural listening and eye contact (stop staring at the kid)
- generating talking by making statements instead of asking questions (stop interrogating the kid)
- focusing on and supporting their interests instead of focusing on their speech tension (promote Pokemon, space aliens, and playing with friends in the sandbox instead of speech tools and fluent speech)

Today I will focus on "putting them in charge."

Dr. Jerry Halvorson, our speech consultant, is big on this one – "Hey Eli, you’re the MAN!" He yells that all the time. Jerry is technically retired and took us on because, well, I’m not really sure except that I think he was a little bored and couldn’t resist a nine-year old kid who stuttered AND loved horses. Eli (who, through the first three years of hanging out several times a month at Jerry’s ranch, had no idea he was a speech therapist) was often "put in charge" around the ranch. He would muck out a horse stall, pick up rocks in the fields, and help load the pick-up with hay bales to take out to the horses in the pasture.

One afternoon I was standing at the sliding glass doors of Jerry’s ranch house after he and Eli had headed out to do chores. As I admired the lovely view, the pick-up truck filled with hay bales came into my field of vision and meandered across the pasture, coasting slowly across the terrain. Jerry was in the back throwing bales of hay off one by one. It took a minute for it to register…but if he was doing that, who was driving?? Yes, it was my nine-year old. Eli thought he was quite something, grinning from ear to ear when he came in the house after chores, yammering his head off about what fun it was to drive a truck. In all of his excitement, he forgot to stutter.

While there are less risky ways you can help your nine-year old experience being "in charge" (although I did grow up on a farm, drove a tractor around that age, and remember feeling like I was quite something!), there are many ways we can integrate take-charge experiences into our children's lives. Other ideas Jerry threw out ranged from having Eli engaging with younger children in a leadership capacity to letting Eli take the lead in planning and cooking a family meal (and being willing to, no matter what, embrace the results with genuine enthusiasm!)

Expecting children to "manage" and "control" their speech only contributes to an increased sense of helplessness, failure, and shame that can permeate their inner world. Putting them in charge and giving them control over many other aspects of their life can go a long ways in countering these feelings and keeping them talking! It may not be as neat and tidy as counting percent of syllable stuttered, but it’s a whole lot more productive, a whole lot more fun, and it will absolutely do no harm!

Thanks so much for your interest!
Doreen Lenz Holte

Tuesday, February 1, 2011

There's nothing harder to let go of than a bad idea...

"The King’s Speech" continues to win awards and to put stuttering on the mass media radar. Anyone who is touched by this issue has to be thrilled that the movie has done so much to increase awareness about a challenge that has been historically met with confusion and uncertainty by both listeners and people who stutter.

Radio hosts who know little about this issue will inevitably ask about what causes stuttering. Those being interviewed, usually a speech therapist, respond with the fact that we really don’t know, but they are quick to state that parents don’t cause stuttering. (Whenever I hear those assurances I have flashes of the time I dropped Buzz Light Year on his head while cleaning his room or the day he took a big swig of my vodka thinking it was water. I am absolved!) But wait a minute – they asked about what causes stuttering, not what makes it worse. While I don’t believe Eli’s stutter had anything to do with Buzz or vodka (or the buzz he might have gotten from the vodka), I do think that as a parent I was and still am greatly empowered to have an impact, negative or positive, on the progression or regression of his stuttering behavior.

Eli once asked, in tears and frustration, "Why does my spa spaaaaaaaaeech haf to be da da da da faaaaaaaaaocus of everything? I wanted so much to fix him, not because I think my children need to be perfect, but because I, as any parent, didn’t want Eli to experience the pain and frustration of having to go through life with this challenge. I vowed to never give up on finding the right resource that would make this all better for him.

Yet with all we were doing, his struggle only intensified. Long drives to weekly speech therapy sessions, daily practice sessions to help him learn speech techniques intended to lessen his struggle, and constant assurances that it was okay to stutter only resulted in a neck-twisting, growling behavior to get a word out and increasing silence. Instead of questioning what we were doing, I assumed, at least for a period of time, that he would have even been worse had we not put forth all this effort.

We are clueless as to what caused Eli to stutter – but we are now not so clueless as to what caused the relentless progression towards silence. All that focus on his speech made him fight harder to not stutter, and only served to increase tension around speaking. We parents can have a tremendous impact on the course of this mysterious affliction – and the sooner we accept that, the sooner we can empower ourselves to impact that course in a positive way.

It’s not easy to accept the idea that the resources we accessed may have actually done more harm than good. But we learn and we grow, and since that’s exactly what we want for our children, this is an opportunity to be wonderful role model. Not sure who said this, but I have it posted on the wall in my office – "There’s nothing harder to let go of than a bad idea." It takes courage to change directions and choose a different path. For the sake of kids who stutter, we all need to find that courage and find a better way. Next week I will share more of the changes we made that helped Eli to let go of his fear and lessen his struggle to speak. Until then – thanks for listening!

Doreen Lenz Holte

Saturday, January 22, 2011

A Message to Professionals Connected With Children Who Stutter

Thank you to everyone who has responded so positively to my blog posts. My message is primarily directed to parents – but as a parent, it gives me so much hope to know that these ideas are also resonating with professionals who are treating children who stutter.

Having said that, my goal isn’t to change anyone’s mind about how speech therapy is done. (Yes, it is my dream, but I am not delusional.) My primary goal is to give a voice to parents and speech therapists who are just starting out on this journey and those who are confused and dissatisfied with outcomes of today’s widely accepted approach to therapy for children who stutter.

Much of my past five years has been spent researching this field including reports written by professors and researchers published in numerous peer-reviewed journals, books by the late greats including Van Riper, Johnson, Bloodstein, Sheehan and the current voices including all Stuttering Foundation of America’s publications, autobiographies (loved Marty Jeezer – RIP), textbooks by Guitar and Shapiro, every paper that has been published through the annual International Stuttering Awareness Day online conference, the list goes on and on. I went in search of context for the therapy that was being promoted as "best practice" by the American Speech and Hearing Association (ASHA), the National Stuttering Association (NSA), the Stuttering Foundation of America (SFA), and other respected organizations in this field.

What I found was quite astonishing. The foundation for what is considered "best practice" stems from research and evidence that is extremely limited in scope, most often packaged as "preliminary," and the vast majority has been done with adults. Even ASHA, the organization that certifies therapists to specialize in working with people who stutter, acknowledges the lack of evidence and agreement on what the goals of therapy should be in their "Guidelines for Practice in Stuttering Treatment." (http://www.asha.org/docs/html/GL1995-00048.html) They claim to not promote a philosophy, and yet within their guidelines they specifically refer to fluency shaping and stuttering modification as the primary focus in therapy today.

The current state of speech therapy for children who stutter is in a knot of confusion and uncertainty with a bit of chaos thrown in. This blog and my upcoming book are my means of unraveling this knot by sharing what I have learned and what I, as a parent of a child who stutters, have experienced and observed. My vision is for a real option to evolve out of this chaos that is built around supporting parents with the goal of keeping their children talking and keeping talking fun – without one ounce of expectation that a child learn to make fewer speech errors and to "manage" their speech through the use of speech tools and techniques.

Yesterday I caught the tail-end of an NPR program that included a panel of experts on global warming with questions from an audience. The final words from one of the panel members was "we know what the problems are, we have the solutions, now we just need action." There is an arrogance in this statement that carries over into many fields and gets us into so much trouble. When it comes to therapy for children who stutter, we can’t continue to plow ahead with actions stemming from ill-conceived solutions to a problem we don’t fully understand, when the outcomes to those actions can be so damaging to a child’s short and long-term well-being.

The speech therapists we dealt with throughout our journey were all caring and dedicated individuals -–they were simply using the solutions they had been trained to use. They continually succeeded in helping Eli to make fewer speech errors in the clinic setting but caused him to chose silence in the real world. There is so much that can be done to avoid this outcome – and to keep kids talking and fully engaged in the world around them. I suggest that we agree on that outcome, create solutions that support that outcome, and help these kids to develop to their fullest potential.

Sunday, January 16, 2011

Put Away The Blow Torch

When Eli was 12, I asked him if he remembered being told by his therapists that "it was okay to stutter." He said no, he was never told that. I know for a fact he had been told this -- several times by several therapists. All he remembers is that he was expected to use his techniques to avoid speech errors. Research for my upcoming book "Voice Unearthed" unearthed many voices warning of potential risks to focusing on eliminating speech errors. Yet these voices are not readily accessible, especially to those making the decisions about if, when, and what type of therapy a child will receive including parents and even speech therapists.

In the "Short Report; Is it Possible for Speech Therapy to Improve Upon Natural Recovery Rates in Children Who Stutter?" (Kalinowski, J.; Saltuklaroglu, T.; Dayalu, V.; Guntupalli, V.; 2005 International Journal of Language Communication Disorders), a volcano analogy is used:

"We have been impeded by the misguided faith, faith in the reality of the ‘units’ of stuttering…the ‘units’ are the smoke…stopping the smoke does not stop the volcano."
In order to prepare for his role in "The King’s Speech," Colin Firth says

"I tried to play it as the character would be experiencing it, which is to try not to do it. The sheer physical effort that requires had an effect on my whole body, and while shooting The King's Speech I suffered from headaches."
Sounds like Firth, as an actor, tapped into the essence behind trying to cap the volcano and it worked."

The late Joseph Sheehan, an eminent speech and language therapist who also stuttered, used an iceberg analogy:

"The part above the surface, what people see and hear, is really the smaller part. By far the larger part is the part underneath, the shame, the fear, the guilt, all those other feelings that we have when we try and speak a simple sentence and can't. Like me you have probably tried to keep as much of that iceberg under the surface as possible...."
(http://www.stammering.org/interiorised_stammering.html)

Russ Hicks, past president of the Dallas Chapter of the National Stuttering Association and national "Member of the Year in 2000" takes Sheehan’s analogy a step further…

"What if we had a giant blowtorch and quickly blasted the top off the iceberg? It would have a flat top, right? Then what would happen? As ice is less dense than water, the iceberg would slowly rise out of water again to maintain that 10/90 above/below ratio. (Thank you Archimedes!) Unfortunately with stuttering that's where the analogy is slightly off. When you blast off the top, in stuttering you typically make the bottom even bigger. Take off the 10% above, add at least 15% below. You now have a stutterer who's failed. He (or she) didn't work hard enough. He didn't care enough. He just isn't smart enough. Lazy, doesn't care, stupid... guilt, anger, shame... the bottom of the iceberg has just grown even bigger. Not only does he now stutter - AGAIN - but he's got even MORE emotional baggage down below. Been there, done that. No fun. Do that enough times, and you've created a monstrous lifetime problem."
(http://www.mnsu.edu/comdis/isad6/papers/hicks6.html)

The blow torch aimed at Eli’s speech errors served to melt the thin ribbon of "it’s really okay" woven into his therapy. Capping off the volcano or blasting off the tip of the iceberg only adds to the emotional baggage that feeds stuttering. Let’s focus instead on a risk-free plan to keeping kids talking.

Sunday, January 9, 2011

Easy Listening (and I’m not talking about the music)…

It’s hard to be a good listener but is it possible to be too good of a listener? What’s the difference between a bad listener, a good listener, and too good of a listener? In order to keep kids talking, we need to be the right kind of listener – and it’s not as easy as it sounds. Actually, it’s easier than it sounds… but maybe different from what we imagine.

If there was anything in the world I ever wanted to be (in addition to a famous singer - which rest assured will never happen) it was to be a good mom. Part of that was being a good listener for my children which I thought meant making eye contact and asking probing questions to show that I was interested. No doubt I learned that in some edgy parenting magazine but apparently I got a little carried away. After our speech therapist, Dr. Halvorson, had several opportunities to observe Eli and I together – he finally squealed “stop staring at the kid, you’re making him crazy!” Alrighty then…

The eye contact issue I was able to adjust to quite easily – in fact it was a relief to know I didn’t have to drop everything and make eye contact every time he talked. But not asking questions, as easy as it sounds, was excruciating for a chatty parent such as myself. Dr. Halvorson had instructed me to hone this skill while in the car with Eli. One day I picked Eli up from a friend’s house and gave it a try. More often than not, the first thing out of my mouth would be “did you have fun?” His usual answer would be “yup!” and then silence. I would follow up with “so, what did you do?” or “did you play outside?” and he would follow up with “nothin, yup, nope.” Finally I would turn on the radio and we’d proceed home in relative silence.

This time I didn’t say a word and left the radio off. For the first few miles things felt awkwardly quiet. I almost had to stuff a mitten in my mouth to keep from belting out a question. Then the chatter started – and he didn’t stop yammering the entire way home. I heard about horses and Star Wars and lots of different Pokemon characters, and a few things I didn’t really need to know, like the fact that you can make a really bad word by just changing one letter in the word “puck” and the first time he used the “d” word (damn) I told him that it wasn’t a nice word, but “ahhhhhhhhhhhI learned it fah fah fah from you Mom!”

Now I’m not going to pretend that every time I chose to not ask questions it resulted in this rich level of conversation – but oftentimes it did. My probing questions and “good eye contact” didn’t encourage free-flowing speech. It only added increased pressure and expectations around speaking. After giving it some thought, I realized that kids often talk as a way of exploring the world around them. They aren’t necessarily looking for a discussion, reaction, or input. They just want to throw it out there, explore the topic, and play with it a bit. A good listener allows them to do that without judgment or reaction. Learning to be this type of listener was a key component to unearthing Eli’s voice.

Although an interesting experiment, there is a happy medium between greeting your child with complete silence and full motherly interrogation. Rather than asking questions, I make comments that may (or may not) inspire conversation. Instead of “how was your day?” I will say “my day was pretty boring!” Instead of “how is your hamburger?” I will say “my hamburger is great!” and then a period of silence. This is easier and far more productive than our daily “special time” segments where my goal was to get him to practice his speech techniques and not make speech errors – and needless to say, way more fun! Keep them talking!

Sunday, January 2, 2011

Voice Unearthed - Keep The Spark Lit

In my last post about our reaction to “The King’s Speech,” I refer to Raisa Gorbachev’s quote “childhood is but a spark…..”  I love that quote.  Kids should sparkle.  Sparks burn out and new ones ignite, over and over again – at least that’s how it is for my three boys (ages 14, 19 and 19).  These sparks, some past, some present, include horses, Pokemon, Legos, fencing, guitar, Halo, art, Colbert, reading, theater, aliens, Conan, astronomy, and the list goes on and on. 

What does this have to do with stuttering?  Everything.  We found the quickest way to dim a spark is to fuel it with  pressure and expectations.  I am forever having those flashes – one kid shows an interest in art and my mind lands on Piccasso --  another looks up at the stars and I have a future astronomer.  Eli has an afternoon without stuttering, and I envision a future with perfect speech.

We have learned over the years that our boys sparkle most, not when they have become perfect in something, but when they engage enthusiastically in the world around them (if you can get them to unplug – a whole ‘nother subject).  When children who stutter are imbued with the expectation of making fewer speech errors, they will often choose to not speak rather than fail.  It’s no different than imbuing a child with the expectation of getting A’s in math.  If they love math and find math to be fairly easy, they will do well.  If they struggle with math and don’t like it, they may fail, or they may still get A’s, but they will take any chance they get to NOT engage in math-type activities. When children struggle with speaking and continually experience perceived failure, they may still speak perfectly on occasion, but they will take any chance they get to NOT have to experience that feeling of failure.  Can we blame them?   

Several years ago I was teaching a writing class at our home school cooperative.  Eli was in the class, and we were “brainstorming.”  Kids were yelling out ideas and I was writing them on the board.  All of a sudden I noticed Eli was in tears.  “Honey, what’s wrong?” (you can sometimes get away with that “honey” stuff with a small home school group). 

“Ahhhhhhhhhhhhhheee cah cah cah cah can’t get a chah chah chah chance to talk!” 

I felt terrible.  Fighting to keep back my own tears, I switched to turn-taking, and held myself together.  Later that day, I called our maverick speech therapist, Dr. Jerry Halvorson, and asked, now letting the tears spill, how should I have handled the situation and should I be doing clean-up? 

He laughed and yelled “Hooray for Eli – he spoke up!”  

It took me a few minutes to get beyond his disregard for my state of anguish, but once I wrapped my mind around his reaction, I realized he was so right.  If Eli had sat quietly amidst all the other yelling kids, I most likely would not have noticed – and so much would have been lost.  Lesson learned.  Keep the spark lit… keep them talking!