"Voice Unearthed" Confuses Parents

Shortly after my book, “Voice Unearthed” was published, a leader in the field of speech therapy for children who stutter expressed concern that my message would “only confuse parents.”  I don’t disagree – and I believe this is a good thing.  We often become confused when we gain information that challenges our current belief system.  Confusion forces us to make the time and space to reflect and to seek further understanding.    

It was exactly this confusion that motivated me to spend six years researching and writing “Voice Unearthed.”  This book was written to help those dealing with this issue articulate their concerns and move forward in demanding and creating better strategies.  

Last Sunday our Unitarian pastor complimented us on how, by coming to church and sitting quietly for an hour, we were making time, thus space, for ourselves.  Creating this space in our lives often leads to reflection and increased awareness.  Confusion is one path to that essential place.

When I was running Eli back and forth to speech therapy twice a week, sitting down with him every day to have “special time,”  finding time for his older brothers, homeschooling, working, keeping everyone fed and watered and keeping up a house, I had little time to reflect.  One week the speech therapist had a family emergency and we suddenly had six additional hours of free time.  It was literally during this week that my level of discomfort and confusion surfaced.  I had the space and time to reflect on how the extraordinary level of energy and resources we were putting into therapy compared to what we were getting in return.  Of course I hoped it would all pay off in the long run, but deep down I think I knew better. 

The National Stuttering Association admits that their surveys indicate that “84% experienced a relapse after improving their fluency in therapy.”  http://www.nsastutter.org/stutteringInformation/NSA_Survey_Results.html

And what does this relapse do – especially to a school-aged child who so wants to please?  Each time they make a speech error, in their minds they have relapsed.  Daily, hourly, each and every minute this is the world they live in.  Filled with fear of failure, of shame, of embarrassment because they failed to use their tool box to avoid the dreaded speech error.  This expectation is not only developmentally inappropriate – but does far more harm than good. 

Many parents and speech therapists have shared with me that they were never comfortable with the instruction and guidance they were getting.  Increasing parents’ and speech therapists’ awareness of the level of disagreement, chaos, and confusion that reigns amongst professionals and researchers SHOULD result in an increased discomfort with how kids who stutter are treated.  Call it confusion or call it frustration, I call it all good because the more parents and speech therapists who find themselves uncomfortable with the current state of therapy, the more quickly much needed change will come about. 

Thank you for your interest and keep them talking!

Best,

Dori Lenz Holte

Keep Our Eye on the Prize

As some of you know, I get a little crazy when I hear the word “manage” connected with children’s speech.  Parents are continually told by support organizations that speech therapy cannot cure stuttering, but can help the child learn to “manage” their stutter.  In the May/June edition of the National Stuttering Association’s “Family Voices,” Nina Reardon, a well-known leader in this field, responds to a question from a parent concerned that her child is switching out words that might be easier in an attempt to avoid stuttering.  Reardon states “Overtime, it can begin to take more effort to avoid a stutter than to stutter openly, or manage a moment of stuttering.” 

Even if Ms. Reardon did not mean to suggest that managing a moment of stuttering takes a similar amount of effort as stuttering openly, this type of rhetoric serves to convince parents and speech therapists there are children out there who are effortlessly using their speech techniques and everyone should invest in this type of therapy.

Reardon asks this parent to consider what their child would want or need from their listeners that would help them deal with their stuttering in the long term.  She says “I pose the question this way, because as those who live in the world of stuttering, we must keep our eyes on the ‘long-term’ prize.  Many times, we do what we think will help in the moment but forget to consider the long-term ramifications.”  I couldn’t agree more.  Yes, the use of speech tools and techniques can help a child in the moment – just like switching words can help in the moment, but this unrealistic expectation runs a tremendous risk of increasing anxiety around speaking, thus exacerbating the issue.  Rather than improve communication, the long-term ramifications are increasing silence, disengagement, and a growing sense of failure. 

National support organizations, in general, do a wonderful job encouraging kids to engage, helping parents to cope, and creating a sense of community for those connected with this issue.  Now is the time to eliminate the expectations of children using speech tools and techniques and focus on helping parents to understand how they can minimize anxiety around talking.   I am convinced that recovery rates would soar – maybe up to the 80% spontaneous recovery rate preschoolers experience – when therapists focus on helping parents and teachers minimize anxiety around talking and do not attempt to arm children with a tool box of techniques.    

Although many are on a different page when it comes to the value of speech tools and techniques in therapy for children who stutter – but I have absolutely no doubt that we are all on the same page when it comes to defining “long-term prize.”  We want kids who are happy, engaged, confident, and giving.   Yes – let’s keep our eye on the prize and focus on keeping them talking!

Best,

Doreen Lenz Holte

I'm Back And Thank You For Support (with corrected Yahoo group link).

Happy Fall to everyone – my favorite time of year!  After taking the summer off to focus on my health (doing better, thank you), I’m back to blogging.   I so appreciate the feedback I've gotten from readers of my blog and my book.  There are several additional options for engaging in this conversation with me and others who care about children who stutter.    

   

-  If you are a therapist and would like to join in the conversation, go to http://groups.yahoo.com/group/vuspeechtherapists.

My book, “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter” has especially resonated with school-based speech therapists.  Many of these dedicated professionals feel at a loss when it comes to treating children who stutter, especially considering the parameters bestowed upon them in the school setting.  I have started a Yahoo Group for therapists who have concerns about children using speech techniques and tools, and would rather focus on keeping kids talking.   They are sharing ideas about goals, measurements, IEP’s, activities focused on encouraging communication, and success stories.  

-  Parents are also invited to share concerns, ideas, and success stories at http://groups.yahoo.com/group/voiceunearthed.

This group has not been as active, but I know, from the number of parents who have connected with me that there is a desire to connect with others who are exploring options for their child who stutters.  So let’s get the conversation going!  We need to keep talking about how to keep them talking!

For the moment these two groups will be separate.  I want each group to be as comfortable as possible when expressing their concerns and successes.  If information is published that could benefit both groups, I will, with author’s permission, cross pollinate…

Conversations on both of these Yahoo Groups will inspire blog topics.  I will also be sharing my opinions about what I'm reading in professional journals, on national support organizations' websites and publications, and my own ideas about keeping kids talking.    

 So thank you all for your ongoing support -- let's work hard to keep those kids talking!!

Best,

Doreen Lenz Holte

Be back soon!!

I've been addressing some health issues and plan to be up and running again soon!!  Well, maybe not "running," but at least up and more energy...

In the meantime, the book, Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter" is available on Amazon and as an e-book.  If you are a parent, you can connect with other parents on yahoo.com/group/voiceunearthed and if your are a speech therapist, go to vuyahoo.com/group/vuspeechtherapists to explore ways to keep kids talking!   As always, thanks for your interest...
Best,
Dori Lenz Holte

Speech Therapists - Join Voice Unearthed Yahoo Group

As another school year winds down, I have been both encouraged by the number of school-based speech therapists who have resonated with the message in my book, “Voice Unearthed.”

Over 50 speech therapists have contacted me directly, sharing their concerns, their fears, and their unrelenting passion to help a child who stutters and to do no harm.  I have no idea how many have ordered the book through Amazon or as an e-book, but I assume that for every one who has contacted me, there are many more out there who feel inadequately prepared yet professionally obligated to help these kids. 

School-based therapists are struggling with ways to get parents involved, developing, measuring, and reporting on  IEP goals that go beyond counting speech errors,  supporting the child in the classroom, and a host of other issues.  Flexibility seems to vary greatly from district to district.  Some therapists have been able to be very creative when it comes to keeping these kids talking and engaged.  Many feel stymied by the parameters and scheduling options within a school setting. 

We cannot keep limping along, hoping that a child who stutters “never darkens my doorway” as one school-based speech therapist put it.   These kids deserve better.  These therapists deserve better too.  Maybe the best place to start is with the therapists themselves. 

And start we have!  Speech therapists are invited to join the newly created Yahoo Group; Voice Unearthed – Speech Therapists.  This is a place they can anonymously or openly share concerns, ideas, and success stories.  Go to http://groups.yahoo.com/group/vuspeechtherapists to join! 

Please feel free to forward this message to colleagues who might be interested… thank you.

Best,
Doreen (Dori) Lenz Holte

Again, First Do No Harm

Recently I was forwarded a comment made by a professor of communication disorders on a professional listserve. She stated that students of speech therapy “MUST be taught that they are not going to make the person who stutters worse by anything they do.” I feel compelled to respond to that by reproducing a section my book, “Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter.” In Chapter 4, I write about the assumptions we made as parents and one of them was “he loves his therapist and thinks therapy is fun, so it can’t do any harm.” I go on to say…
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When talking to other parents at conferences, I often heard about how much fun their child had at speech therapy and about how much they loved their therapist. Eli was, for the most part, no exception. In retrospect, it was easy for us to get distracted by a therapist’s encouraging tone and good intentions and to lose sight of what we were trying to accomplish. Eli didn’t need to go to speech therapy to make friends and have fun. Speech therapy was supposed to help him to speak more easily and none of his therapy helped with this outside the clinic setting.

But therapy certainly didn’t hurt Eli, or did it? First let’s consider the logistics…hours in the car, time in the clinic, and time spent practicing therapy at home - over a five-year period. Add in the financial impact, the cost of gas, wear and tear on the car, and the therapy itself. Well worth it if the outcomes are good. But they were not, and that’s a significant chunk of time and effort out of a child’s life that could have been spent engaged in activities with better outcomes such as playing with friends or hanging out at Grandma's.

Even more importantly, I can’t remember one conversation between myself and a speech therapist that didn’t indicate that Eli was doing great in therapy. And yet our efforts over a five-year period only resulted in:

- Eli becoming more and more silent.
- Eli participating in fewer and fewer activities that involved meeting and talking with
strangers.
- Eli acquiring secondary problem behaviors including turning his chin to his shoulder, dropping his jaw, and growling to get himself started.
- Eli growing increasingly depressed.
- Eli feeling exhausted and experiencing major sleep issues.

Medical ethics include a fundamental principle of “first do no harm” stemming from Hippocratic writing Epidemics. Hippocrates states that “the physician must be able to tell the antecedents, know the present, and foretell the future - must mediate these things, and have two special objects in view with regard to disease, namely, to do good or to do no harm.”
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Speech therapists, parents, grandparents, friends, neighbors – all can contribute to a child’s increased anxiety and tension around communication. There is hope in this statement – because if we can create an environment that contributes to the exacerbation of stuttering, we can create an environment that minimizes the progression and even contributes to the regression of anxiety and tension around speaking. First do no harm, keep them talking!

Best,
Doreen (Dori) Lenz Holte

A Chubby Little Hand and Listener Intentions

When Eli was four years old he was sitting on the floor in Sunday school with about fifteen other four-year-olds. There was a little boy sitting next to him – cute little guy, on the chubby side, dressed like a cowboy. Eli had spoken several times and the little boy now had his head tilted and eyes narrowed, studying Eli like a bug. Unbeknownst to Eli, I was standing just a few feet behind them and my heart stopped. I knew something was going to come out of this boy’s mouth and there wasn’t a thing I could do to stop it. Finally the little boy asked in a soft voice, “why do you talk that way?” Eli looked at him and whispered “because sometimes I stutter.” The little boy grinned and patted Eli’s back with his chubby little hand and whispered “oh, that’s okay!” Eli grinned back -- all was good.

Several months later we were at Eli’s older brothers’ baseball game. Eli asked me to walk with him into a nearby church to use the restroom. As we were walking he started to cry. I took his hand and asked what was wrong. He said “a boy just asked me why I talk this way.” Again my heart stopped but I calmly asked him how he felt about that. He stopped walking, ripped his hand out of mine, and said angrily, “MOM, I know the difference between (nice tone), ‘why do you talk that way?’ and (mean tone) ‘why do you talk that way?’”

I don’t remember if Eli was aware that I had overheard the previous conversation between him and the little cowboy, but I was profoundly moved by his insight. To this day he seems to do a good job of considering intention when a listener reacts to his speech. He has taught me to do the same. When we take the time to consider intentions, we find that most often the intentions are good.

Our family, relative to most others, is extremely knowledgeable about and sensitive to the subject of stuttering. I have a friend whose family is extremely knowledgeable about autism, because they have a child who is autistic. The first time I was with that child I made him very angry when I acted appalled at his fixation on snakes. Most boys would have loved my reaction – but not this one. After comforting her son, my friend helped me to understand and gave me guidance as to how to react in a way that was more supportive for him. All was good.

It is not unusual for a listener to react to Eli’s speech with a startled look, a slight frown, or an intense stare. Sometimes a listener finishes his sentence for him and we both feel angry. I have no doubt that my friend’s heart wrenched when her son’s feelings were so hurt by my comment about his love of snakes. I was completely ignorant – as I am about many things – and I was grateful for her compassionate response. I did not mean her son harm.

I often remember that chubby little hand warmly patting Eli’s back and about four-year old Eli’s reminder to consider intention. This keeps both of us from letting those seeds of anger take root and grow like a wildly invasive species, permeating every aspects of our lives.
Keep them talking, keep it fun!

Best,
Doreen (Dori) Lenz Holte