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." ( 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...."

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."

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!