Thank
you NSA! The National Stuttering Association sponsored another Family Fun Day
in Boston this fall. Such a uniquely empowering event! Children who stutter
meet one another, learn about stuttering and enjoy self-affirming activities.
Parents learn about stuttering and share experiences. It’s a morning that takes
hours and hours of volunteer planning. It was my privilege to help facilitate the teen group again this
year. It is so energizing to spend time with people who work at
self-improvement and mutual support.
The
National Stuttering Association (NSA) is a self-help group for people who
stutter. It has local chapters across the United States. There are videos,
podcasts, books, newsletters, brochures and merchandize on the NSA website.[1]
The annual conference features programs for adults, families and speech
language pathologists (slps). I’ve attended many of them, always returning home
enlightened and enthusiastic.
The NSA annual
conference is a ‘reality check’ for me.
People of all ages fill the workshops and hallways with a variety of
viewpoints. The many voices at an NSA conference are like a cacophony of bird song
at dawn. Some are louder than others. Some sound nearly identical. Most are emotional
and sincere. Everyone has a story.
Wondering
what I mean by ‘reality check?’ Take a
look at the writings of Doreen Lenz Holte, parent of a child who stutters. Voice Unearthed [2]
is her memoir. Someone handed me a copy
to read and then pass along. I was dismayed by the many pages of opinion presented
as fact. But, I respected Ms Holte’s passion. Her arguments were no surprise. I’m
familiar with the journey.
Let’s look
at two of her comments.
One. Ms
Holte challenges “the powers that be…to establish resources and support around
indirect therapy, so parents have real
options. If, as you tell us, ‘what works for one doesn’t work for everybody,’
then give us real choices beyond changing the moment of the stutter and
minimizing speech errors.’”[3]
I’ve watched the profession search for these options. Perhaps this is why I learned way back in
1992[4]
that differential diagnosis may be one key to designing treatment. A workbook called The School – Age Child Who Stutters: Working Effectively with Attitudes
and Emotions came out in 2001. Research suggests that stuttering is often
accompanied by other issues such as differences in phonology, language and
temperament and there may be subtypes of stuttering.[5]
I’ve witnessed experts battle heatedly over early intervention. The debate
rages on in a recent ASHASphere [6]
and, quite frankly, I grow tired of the bitterness. Ms Holte is not alone in
her confusion and frustration. [7]
May I
suggest The POWERR Game[8] as an eloquent option. It costs
$16.00 and has been around since 2003. It was created by Gordon W. Blood,
Ph.D., CCC-SLP, a well respected expert in the field. I presented this option to teens at the NSA
conference in Atlanta and both NSA Family Days in Boston. The longer I stay in
this profession, the more I appreciate this program. I really didn’t know how
to access the depth and breadth of this resource in my younger days. The
letters of POWERR represent Permission,
Ownership, Well-Being, Esteem of Self, Resilience
and Responsibility. What families need is this larger context in which
to place stuttering treatment. This year, I designed new playing cards with
many of the POWERR concepts
represented as single words. For example, reaction,
change, myth, and outcome fall under the category of Permission.
The children in the NSA teen group selected from words like these and shared
stories from their own lives. This became the preface for discussing speech and
communication skills.
Two. Ms
Holte was dissatisfied with several “rounds” of therapy (few details provided).
Talk to many seasoned experts in the field of stuttering and you’ll hear this:
It’s not the program that matters. It’s the relationship between the slp and
the client. In the spirit of placing
treatment in a broader context, I digress with story of my own of how people
make a difference.
It is a
bright, very warm, September afternoon at the soccer field. I sit with about 30
or so other parents in a single row of colorful folding chairs decorating a
sideline. We watch our unique children become team players in a league
sponsored by a local non-profit organization. I've watched for many years and it fascinates me how every
child, every coach, and every fan contributes to the experience.
It's 2:30
and players age 12 to 18 (all shapes,
sizes, skill-levels, and personalities) take the field. The referee blows a
whistle, glances at his watch and the game begins. Red team players laugh as
they pass the ball around. Blue team players are more serious. A few strong
players touch the ball most of the time. Many blue team members look like
spectators embedded in the game. Like a flock of birds swirling through the
sky, players run around the field.
To my left,
two women share some play by play. “She
scored that goal from midfield! " To my right, a husband and wife catch up
because he’s been on the road. The red
team players exchange friendly, supportive banter. "That's it!...way to
be!...man on, man on!" Then, a
whistle. The game stops. A blue team player is called out for tripping.
Each person
here adds to the joy of this moment. One angry parent could transform this
pleasant community gathering into an anxious two hours. But I’ve never seen
that happen. My only complaint is the aggressiveness of the blue team coach.
The rules of soccer are the same for both teams. Yet coaches interpret the game
differently and you can see it in how the children play. The blue team wins -
again. And the fans politely congratulate everyone as we walk to the parking
lot. But I know that some parents will
request their children be on the red team next year. Because soccer is fun,
except when it's not. It’s how you
choose to play it.
Back to
stuttering. This is not rocket science. Who do you choose as your friends? Who
do you hire for projects? What religious community, social organization, or
volunteer groups do you join? I bet you engage and employ people you feel good
about. So here’s a problem. Public education provides one-size-fits-all
programs. Students get “free” therapy with the only slp available. Health
insurance covers a very limited course of treatment – if you’re lucky. An slp
with additional training in stuttering may not be near you and tele-practice
regulations make it difficult to access their services. I don’t accept
insurance and I require parents participate in all treatment sessions.
Consequently, I’ve always had few clients. I was glad to read that Ms Holt
eventually found the “right” slp for her son.
I
believe frustration about treatment boils down to one simple concept. We cannot
change another person’s behavior. Parents want me to fix their child’s speech.
It can’t be done. A child is not a tablet needing the right app or an animal to
be trained. And no matter how I present therapy, I see parents continue to
blame children for stuttering. Ms Holte is right. There needs to be a
revolution in how we provide treatment for stuttering. The disconnect between
researcher, clinician, and family hasn't been bridged. I for one will stop providing treatment in all but a very select few
cases. Instead, I will offer family education and training as the only first option.
I wish you
well on your journey with stuttering. When you are ready to change (I'm talking to parents and children) the
National Stuttering Association and Stuttering Foundation are there to support
and inform you.
p.s.
And here’s a brand new gem: Stuttering is Cool: A Guide to
Stuttering in a Fast-Talking World.[9]
This humble book filled with delightful drawings of Franky Banky & friends
will validate the children, teens and even adults who stutter, especially
someone far enough along on his personal journey to glimpse whole-picture
thinking. [10]
Mr Rossi gives us a modern version of the ‘reality check.’
Thanks for reading,
Judy
[2] Doreen Lenz Holte (2011) Voice Unearthed: Hope, Help, and a Wake-Up-Call for the Parents of
Children Who Stutter. no publisher
listed.
[3] Ibid. p. 104
[4] A 2-week residential training program at
Northwestern University sponsored by the Stuttering Foundation
[5] Nan
Bernstein Ratner, Ed.D. (2012) Evidence
Based Practice and Practice-Based Evidence: Closing the Gap, Nashville, TN:
Stuttering Foundation No. 6720.
[6] Roger
J. Ingham and Janis Costello Ingham (Oct.28, 2014) A Misleading Account of Research on Stuttering Treatment
for Young Children
[7] I recently switched to Practical Intervention for Early Childhood Stammering: Palin PCI
Approach (2008) for children through age 7. Written by Elaine Kelman &
Alison Nicholas. Published by United Kingdom: Speechmark Publishing Ltd. This
program requires and respects parent participation.
[8] Gordon W. Blood (2003) The PowerR Game: Managing Stuttering, Memphis, TN: The Stuttering
Foundation publication no. 0250, www.stutteringhelp.org.
[10] PowerR, p. 36