What Does This Even Mean?

Most discussions about the uncertainty and disagreement that exists in the field of treatment for children who stutter take place between professionals.  Fortunately, with existing technology, parents can now access these conversations.  I think it’s important to take advantage of these opened doors in order to gain the necessary context needed to make safe and educated decisions around treatment for children.    

Recently I listened to Peter Reitzes (StutterTalk podcast 494) interview Dr. Craig Coleman, a speech therapist and professor at Marshall University and also a board-certified specialist in fluency disorders.  They were challenging a colleague’s YouTube videos on response contingency therapy i.e. Lidcombe.  In her videos, Carrie Clark promotes response contingency therapy as “the best” therapy for preschoolers according to evidence-based research. 

Coleman rightfully questions this evidence.  He points out that we should not confuse “most data” with “best data” and I think that’s brilliant.  He questions what the study actually measures and its value to the well-being of the child.  Coleman defines disfluencies as a disruption in the flow of speech and stuttering as disfluencies AND physical tension, secondary behaviors, negative reaction, impact on communication, etc…I see this as one of the better descriptions of these terms.  The physical tension, secondary behaviors, negative reaction, and impact on communication, self-esteem and long-term well-being can create a far greater handicap for children who stutter, and yet the primary focus continues to be the disfluencies.  In fact, I believe that the focus on disfluencies often contributes to the manifestation of the stuttering behavior, especially with young children.

Coleman refers to a survey he conducted where 96% of speech therapists defined stuttering as disfluencies only.  He points out that “how you define the term is also going to be how you assess it and treat it.”  So it’s safe to bet that the majority of speech therapists who treat children are still focusing primarily on getting rid of the disfluencies.  The tide is beginning to turn, but not quickly enough!  Following is an example of what many parents on my Voice Unearthed Facebook are experiencing:

"Tommy" received his school-based speech progress report today and reading the remarks on it leave me with all sorts of mixed emotions. To highlight some portions of it, 'goals: Tommy will increase control and understanding of disfluent behavior. Tommy will develop controls of breathing and voice to be more fluent.' Overall comments: 'Tommy's articulation is intelligible and accurate when he slows down his speech and concentrates on controlling his fluency. He continues to require prompting to remember to utilize his strategies for fluency and secondary behaviors seem to increase with his excitement'.

I wish I could say this is the exception but it is not.  Coleman also says it’s important to match the skill set of the therapist to the individual needs of the child and their family.  What does that even mean?   Therapists do have different skill sets, but what are they and which one matches up with your child?  We can only find out through trial and error and sadly that’s where the damage can be done.  

ASHA wants us to put our faith in their system of certification and yet they themselves report, in a 2010 study, through the National Center for Evidence Based Practice for Preschoolers, that 

"The current state of evidence does not provide meaningful information for clinicians’ attempt to decide between direct (Lidcombe or speech tools) and indirect therapy."

At the same time Coleman states that if you look at all the different models – Lidcombe, Palin Centre, Demands and Capacities – that “all the results are very good.”  Based on what – measures of disfluencies?    

In conclusion…

1)      1)  There is no meaningful information for therapists to decide between direct and indirect therapy for preschoolers,

2)      2)  most speech therapists define stuttering inaccurately which lends itself to inappropriate treatments,

3)      3)  and studies that are suppose to provide evidence of efficacy are measuring the wrong data in the first place.  

And yet Reitzes and Colman enthusiastically agree when Clark says “If you are worried, go ask a speech therapist.”  I don’t think I’m in any hurry…  

(Don’t get me wrong -- I would say that speech therapists are one of the most dedicated and compassionate groups of professionals I’ve ever come across.  Many have been convinced by the powers that be that there is good evidence supporting the treatment options they are trained to provide.  As professionals, they believe they are ethically and morally obligated to abide by those options.  They put their faith in what they’ve been taught just as we put our faith in them.)

Join us at the Voice Unearthed Facebook Page!

I've been away for awhile because I've been busy administering the Voice Unearthed Facebook page.  I am overwhelmed with the response (210 members and counting) and the support that these parents and adults are to each other.  The Voice Unearthed Facebook Group is inspired by my book, "Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter" and the primary focus is on keeping our kids talking and engaged in the world around them.  Join in the conversation!  Or lurk and learn!

Best,
Dori

Therapy for children who stutter? "Sing the Monday night football song in your underwear!" says Josh.

I'm going to republish this wonderful blog post by my guest blogger, Josh Drzewicki, because the links were not working in the last one.  Thanks Josh for patiently walking me through that blip!!  

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Josh Drzewicki is an adult who stutters with a great sense of humor and wonderful ability to write!  This piece, published on his blog, came across the British Stammer Association and I thought it was lovely, especially for parents.  Thank you Josh, for being my guest blogger today!  Enjoy!

 

 "Sing the Monday night football song in your underwear!" says Josh.

As every person who grew up stuttering, my speech has had its ups and downs. Some days I could blow through my sentences like a NASCAR driver down a moonlit country road. Others, I was a bull, stomping and thrashing through the china shop, destroying the beauty and elegance of the spoken language.

"Hu-hu-hu-hu-hi-i-i-i-i, muh-muh-muh y name is Juh-juh-josh," I would say as I introduced myself to people, generally someone my dad knew. Days like this were a constant reminder that I was part of the 1% - the 1% who stuttered.

Growing up with a stutter isn't easy for anyone. Luckily I had some incredible parents who were behind me at every step. I was diagnosed and enrolled in speech therapy very early in life. I was given a chance to push back against my stutter and was encouraged to be the person that I wanted to be, even if I fell flat on my face trying.

This is the reason I wrote this article - to help parents contribute to their child's life just like mine did. They didn't have the expertise of a person who stutters or a Speech-Language Pathology degree, but, with the help of my grandparents, they did the best they could.

I'm not here to rid your child of their stutter, as of now, there is no cure. I am not here to "defeat" the stutter either, but to help children refuse to let it defeat them. And as nearly every habit (including singing the Monday Night Football song in my underwear every Monday), it starts with the parents.

1. Listen to your child

Growing up, on a bad-speech day, I was frequently told one of several things.

"Josh, stop and take a deep breath, then start over."

"Slow down and you won't stutter."

Although they have good intentions, don't say it. It just puts more pressure onto the speaker. When someone says that, they're indirectly saying, "It's uncomfortable for me to listen to you struggle with your words. Let's get this over with."

Think of putting four pound weights on the ankles of an Olympic sprinter before the gold-medal race.

The increased tension and anxiety creates a feeling of incapability and is detrimental to their self esteem.

What you can do as a parent is listen. Let the child say what they want. Always give them your full attention, because the reinforcement of talking to someone who will genuinely listen and care will help their social anxiety levels in the short and long run. Plus, they may be more willing to seek advice and talk to you in the future. In my case, when I was slightly pudgy and had hair drooping in my eyes (and girls still had cooties). I was a disastrous mess of Axe body spray and hair gel, but it had nothing to do with my stutter.

If your child has something to say, let them say it. Both of you will be better off for it.

2. Make speaking fun

The more fun you can make speaking, the more relaxed and excited your child will be to speak.

I've always loved talking. I think it's partially because my parents were very social people when I was growing up. Anywhere I go with my dad, he always knows someone. We could be in the middle of nowhere (think Iowa, no offense), driving down a dirt road and he would see one of his high school friends and talk for 15+ minutes.

He kept the concept of conversation and speaking with people light and easy. Seeing him do it all of the time made it easier for me to emulate him. In middle school (he was my principal), I spent countless hours in detention for talking because of how much I enjoyed it (sorry dad).

For a kid who is in their earlier years of elementary school, make it a game to meet people and talk more. A suggestion I would give is to give is to challenge them to meet a certain number of people on the first day of school. Say five or six. If they meet it, take them out for ice cream. Set milestones for them to reach and reward them for it. In today's age, you can have your child take a selfie with each kid they meet to prove it. Or ask the teacher if they actually talked to the people they said they did.

Another idea would be to let your child tell you a story. Not about their life, but let them dream up a story and tell you, think dragons, princesses and weird castles with chefs that only make the best of shaped mac and cheese. The creative and novel thinking is good for their development, plus they get to talk and be creative. I have found that relaxing and enjoying myself is the easiest way to not care about my stutter.

3. Find other kids who stutter

The number one complaint I've heard from people who stutter is that they felt alone. Your child probably feels like an outsider because they can't talk while all of their peers find it so easy. The best remedy is finding someone else who stutters for your child. Just knowing they're not the only one is a huge de-stressor. It also gives your child a chance to talk to someone who is going through the same challenges as them.

The number one resource I've heard of so far is the National Stuttering Association. You can find an NSA meeting near you with this link. (hyperlink to this http://www.westutter.org/find-an-nsa-meeting-near-you/)

The next national meeting is in Chicago, Ill. (not until 2015 though). So if you're in the Midwest, that could be a great time to get your child into a situation where they are surrounded by people who stutter. Personally, I've never gone, but every person I've talked to who has gone had a great time and nearly always gone back the next year. You can find out more information here. (hyperlink to http://www.westutter.org/annual-conference/)

Another option to find kids who stutter is to ask a speech pathologist or your school-based speech therapist if they know any. They would be a great resource. Many speech pathologists know other pathologists from nearby cities or towns and would be able to ask them if they have a student around your child's age who stutters.

In conclusion

Only one percent of the world's population stutters. That may seem like a very small number, but in context, that is over 3 million Americans. Right now, Google says the size of East Lansing, Mich. is about 48,500. That means that nearly 500 people in my city stutter. That's a fair amount of people. So make sure your child gets out and about and meets these people. It will encourage them to be a role model for someone else who stutters when they're older.

Last but not least, here is a Tedx talk from Sharon Emery. She lives in Lansing, Mich. and is in the public relations field. She is a fantastic human being and has a unique view on stuttering.

Embed or hyperlink this https://www.youtube.com/watch?v=hrAxNijdJVY

Josh Drzewicki writes and podcasts at StutterLife.com about stuttering. (hyperlink to www.stutterlife.com)