12/30/13

Thank You


 I hope that 2014 is a year in which your children are safe, healthy, and talking with self-confidence. You have supported your children in a world that values speed and efficiency over patience and attention. Thank you for being the change.

 Five wonderful challenges took my time this fall:

1.             I spoke to a class of graduate students at the University of Connecticut. The topic was treatment for stuttering in preschool children.

2.             I was a guest on the National Stuttering Association Family Radio show. We discussed the relationship between the speech-language pathologist and family.

3.             I facilitated a workshop for teens at the National Stuttering Association Family Day at Boston University.

4.             I presented a two-hour workshop for a local school district. 

5.            Nina Reeves, MS, CCC-SLP, BRS-FD of Stuttering Therapy Services/Seminars, PLLC, spoke to the Maine Speech Language and Hearing Association and  I was there. Local workshops about stuttering are rare and Nina is one of the best therapists in the country.

All of this prompted me to reflect on my 30+ years as a speech-language pathologist.  It's been hard work and wonderfully rewarding. I've watched changes in education and health care reduce access to stuttering therapy and live continuing education workshops.  My response in 2014 will be to assemble a workbook for free regional, small-group workshops.

 Thank goodness the Stuttering Foundation and the National Stuttering Association  continue to inform and support us. I recommend you take a listen to StutterTalk as well, where you will find podcasts representing a variety of opinions about stuttering with Peter Reitzes as a polite and unbiased host.  These outstanding organizations deserve our gratitude. Let us support them in 2014 and beyond.

Happy New Year!

 

Judy

9/3/13

The Arm Bump - Revised


This is a revised version of the blog post from  3/18/09. 



Here is a popular activity that helps fluent speakers understand a little bit about what stuttering is like. I led a group of about 20 teachers in this exercise.  I expected it would be the most effective way to engage them at the end of a school day. And we only had 30 minutes.

I began by asking them all to take out their #2 pencils. Seriously.

          Each teacher chose a partner sitting beside them. One partner wrote her name several times on a piece of paper. The other partner bumped the writer's arm several times as she was writing. The bumping needed to vary in pressure and timing so that the writer could not predict when it would happen or how it would feel. Teachers were laughing, talking,  and grumbling about messy writing....the first objective of the afternoon had been accomplished - they were engaged.


          Facilitated discussion followed: how did they like the writing? How did their fingers, hands, wrists, arms, shoulders or any other parts of their body react to being bumped? How did they respond emotionally... any anticipation anxiety? Did they try prepare for the bumping?

         This activity elicits physical tension in the fingers and hands of the writer. People tend to grip their pencils more tightly in anticipation of and in reaction to being bumped. They feel a range of emotions: annoyance, frustration, loss of control. One writer spontaneously grumbled, "I give up." I wondered – give up what? Trying to write smoothly or to write at all?

People who stutter tend to stutter when saying their own names, which can be very embarrassing. This is why the writers were asked to write their own names. They write for several minutes so as to experience the relentless nature of the bumping. Yet, after 5 minutes, they have the luxury of returning to their original state of fluent writing. Facilitated discussion guides the conversation to how a person responds to stuttering.


          In the 10 minutes reserved for questions, someone asked, "What can teachers do to help a child who stutters?" and I knew I had missed an important objective. The next presentation must include copies of Straight Talk for Teachers from the Stuttering Foundation of America for every teacher. We all still want a "How to..." list of directions. Please visit http://www.stutteringhelp.org/ for specific tips for the classroom.


          Update: 1.) Tell the bumpers to offer advice to writers during the activity, like “Take your time.” 2. ) After one partner writes and one partner bumps, ask the bumper what she observed in the writer. What did she think the writer was thinking and feeling. How did she think the writer was coping with having her arm bumped. Then, do a reality check. Ask the writer what she was actually thinking, feeling, and doing.

8/26/13

Back to School Preparations for Children Who Stutter



When I walked to a nearby shopping center this week, the parking lot outside the office supply store was extraordinarily busy.   Inside, children strolled up and down the aisles chattering about new classrooms and selecting school supplies. It was back-to-school shopping time.

The beginning of a new school year brings with it an abrupt lifestyle change. We can help children transition from the casual summer months to the more rigorous academic calendar by making small changes several days before school begins. The National Center for Learning Disabilities suggests[1]

1.      re-establishing bedtime routines before the start of school,

2.      preparing a location and schedule for doing homework,

3.      collecting and organizing needed supplies,

4.      reviewing basic academic material,

5.      building excitement for school, and,

6.      reading books together about going back to school.

 The child who stutters has an even longer to-do list.  She has the added responsibility of

1.      educating her new teacher(s) and peers about stuttering,[2]

2.       planning new communication goals, and,

3.       role-playing options for how to cope with teasing.

I read through print copies of newsletters I’d saved over the years in search of tips for going back-to-school. These newsletters from Friends[3], The National Stuttering Association[4] and The Stuttering Foundation[5] are priceless resources for family-friendly information. They are filled with brief, understandable articles by children, parents, and professionals.  I was thrilled to find that back issues were available on the organizations’ websites.  

 A few back-to-school activities showed up repeatedly: writing a letter to the new teacher(s), planning a class presentation, and dealing with teasing. The National Stuttering Association had a brochure about Stuttering and Reading Fluency also.  I was grateful this information was so easy for families to locate and download. In this article, I’d like us to think about skills and attitudes that may be preconditions to accomplishing any of these self-advocacy activities.

 The child feels respected.  I have listened to some children, with and without speech/language differences, talk about school as an intimidating institution in which expectations feel overwhelming and dehumanizing. When school personnel view students in terms of performance data, I understand why children hide their stuttering. A former student of public school speech therapy writes,By counting each stuttered word or reporting specific moments of dysfluency in the classroom, I would argue that this places an unnecessary burden on the young stutterer. I have been lucky to witness the extraordinary work of numerous special educators who resist this pressure. Take it from my firsthand experience, educators are able to make a lasting impact by working closely with their student without quantifying his or her communicative performance.”[6] I think a child will need to feel the warmth of personal concern from a teacher before starting a conversation about stuttering.

The child can discuss thoughts, feelings and behaviors. Most moms of older children tell me they seldom talk about stuttering. Parents of preschoolers worry that saying something will make the stuttering worse.  I sympathize. Inviting children to talk about stuttering is a delicate process and I’ve had many mishaps trying to talk about ‘the elephant in the room.’ I’ve had students cry, change the topic, act silly or aggressive, or stare at me silently when I ask them specifics about their speech and experiences with communication.  Stuttering is an intimately personal topic and should be approached carefully. Peter Reitzes experimented with humor by asking children to write funny laws such as ”Anyone who tells a child who stutters to ‘slow down’ will have to walk around all day with his or her shoelaces tied together.” This humor helped move children into discussions of how to educate and advocate. “Creating new laws for people who stutter proved to be a valuable tool for discussing stuttering in an open, fun, and productive manner.” [7]

I don’t anticipate much progress in fluency therapy until a child and family can take a step back and observe stuttering with a cool head and forgiving heart. Desensitization to the moment of stuttering is, in my opinion, essential. It’s an issue that resonates across sessions and communication goals. It impacts multiple components of a comprehensive speech therapy program. Negative emotional reactions to stuttering create a fog, clouding our senses, preventing a clear perception of reality and blinding us to creative solutions.

So…

If a child is developing sense of empowerment and can talk about his communication needs, then speech therapy can confront the issues children who stutter encounter at school.

Quick, verbal self-defense is especially difficult for children who stutter.  Even the cleverest come-back can be too difficult to say right when it’s needed the most. So alternate ways of coping with teasing are important.

Listeners don’t know stuttering. Teachers and peers will need some information. If a child would like to write a letter to her teacher, there are examples on the Friends website.[8] The August 2010 issue has Approaching Your Teacher About Stuttering by Elizabeth Mendez[9] who writes, “Think about a fresh start and consider being open about something about you that has made you become the amazing and strong person you are today. Consider sharing with your teachers your stuttering and for those who can do the extra mile, educate them with resources.” Resources are free at the National Stuttering Association website including the comprehensive brochure “What Teachers Need to Know to Help Children Who Stutter.” The Stuttering Foundation has a booklet, DVD, brochure, and new storybook about teachers. I recommend that a parent be proactive as well, arranging frequent parent-teacher check-ins.

Some children may want to give a class presentation about stuttering with the help of their speech language pathologist. The National Stuttering Association and the Stuttering Foundation furnish guidelines for putting such a presentation together.  The following issues of Reaching Out have examples:  

A Proud Mom’s Story by Sue Parisi (Sept-Oct 2008)

Does Anyone Have Any Questions? By Ellie Hooey (Jan-Feb 2009)

Telling the Class by Francine J Bliss (March-April 2010)


Children who stutter are teased.  Constance Dugan has a very thoughtful article to accompany her “Teasing Inventory for School-Age Kids Who Stutter” in the 2006 International Stuttering Awareness Day Online Conference[10]. She spends a few minutes of every speech therapy session filling out the teasing inventory. Repetition helps children get comfortable with the process. She finds that the scale format helps children to respond and teaches them about intensity. “It is important to recognize not only different feelings but different intensities. For example, ‘annoyed’ reflects less distress than ‘furious’.”  The few, carefully crafted, short-answer questions “communicate the old advice: Honor your feelings but monitor your actions. Following these up by “How did you feel then?” can help kids become aware that they have some power to reduce their own suffering.”

Gail Wilson Lew’s article “Stuttering and Teasing” in the Nov-Dec 2009 Reaching Out reminds us why children may not seek help for teasing. She writes, “One day, in 9th grade Spanish class, the boy behind me started to pull on my pony tail. I did not want to turn around because I was afraid I would get in trouble with the teacher. I was also reluctant to tell the teacher, because I would then have to speak up and explain: thus, the possibility of stuttering and embarrassment.”  Later in the article she explains, “A child who stutters does not want others to know that he stutters, because he does not want to be ‘different.’ He wants to be accepted. A lot of pressure may be lifted if a child lets people know that he stutters and does not try to hide it.”

Reading aloud and reading assessments can be demoralizing. I appeal to everyone who reads this article to download the brochure “Stuttering and Reading Fluency: Information for Teachers.” The national initiative to promote reading is admirable. However, it is placing excessive pressure on children who stutter. “Reading aloud can be quite stressful for those who stutter, mostly because they are worried about how others might react to their stuttering.” Also, “a child should not be penalized for moments of stuttering when assessing reading fluency. Fluency of speech is not the same as fluency of decoding.”[11]

 I agree that children, in partnership with parents and educators, can advocate for their communication needs.  I also think that advocacy is predicated on healthy communication attitudes and sensitive support from others. If teasing crosses the line and becomes bullying, my blog of 9/6/12 “Bullying Prevention and Intervention Laws Could Help Children Who Stutter” may prove useful.

            I wish you lots of fun friendships, fond memories and academic success as you embark upon another school year!


Judy




[1] The National Center for Learning Disabilities, 8/17/13, “Six Ways to Get Your Child Back into the Learning Groove,” e-mail newsletter, the six items are paraphrased, www.ncld.org
[2] According the Bill of Rights and Responsibilities of People Who Stutter, “A person who stutters has the responsibility to... 1.understand that listeners or conversation partners may be uninformed about stuttering and its ramifications…”  International Stuttering Association http://www.isastutter.org/what-we-do/bill-of-rights-and-responsibilities
[3] Reaching Out, Friends: The Association of Young People Who Stutter www.friendswhostutter.org
[4] Family Voices, The National Stuttering Association, www.westutter.org
[5] The Stuttering Foundation www.stutteringhelp.org
[6] Jack McDermott. “Speech Therapy in Public Education Settings: A Former Student’s Perspectives”, http://www.westutter.org/assets/2012_3Q_FV.pdf  Family Voices Third Quarter 2012 p. 7
[7] Peter Reitzes, “It Outghta Be a Law!” Reaching Out, October-November-December 2005.
[10] Constance Dugan (2006) “Teasing Inventory for School Age Kids Who Stutter” International Stuttering Awareness Day Online Conference http://www.mnsu.edu/comdis/isad9/papers/therapy9/dugan9.html

8/17/13

National Stuttering Association Family Fun Day


     The National Stuttering Association (NSA) is finally returning to the Boston area by hosting a Family Fun Day and adult workshop on November 2nd at Boston University. This is a rare opportunity to learn about stuttering in a uniquely welcoming and empowering environment.

     I recall when the Boston Chapter of the NSA hosted a Family Day in the summer of 2002 at Newton Wellesley Hospital. I helped organize it alongside NSA member, John Carter.  After opening words by Boston chapter members, the mother of one of my students said a few words about parenting a child who stutters. Her kind smile and open heart set everyone at ease.  I still have a copy of what she said. “I truly believe that everything that I can do to find inner peace and balance within myself will affect the way I interact and parent my children. Taking care of ourselves is probably the most important thing we can do for them.” One of my adult clients came up with a theme for the day: Be an advocate for yourself and a role model for others. Local speech-language pathologists volunteered to facilitate workshops. A magician entertained us after lunch. We finished the day with open-mic, certificates of attendance and balloons.  

     Fast forward to 2013!

     I’m told the Family Fun Day this year will run from 9-12. There will be a program for adults in the afternoon and continuing education for speech language pathologists as well. This is a golden opportunity to glimpse the magic that happens every year at an NSA national conference. I’ve attended several: Cleveland, Chicago, Boston, Knoxville, Atlanta, Parsippany and St. Petersburg. Attending an NSA event is truly  a game changer. I hope some families from the area will join me in Washington, DC for NSA 2014: Red, White, Blue, and You! [1] The NSA vision to bring “hope and empowerment to children and adults who stutter, their families, and professionals through support, education, advocacy, and research” is reflected in four days of education, sharing, and fun. The Boston Family Day will only whet your appetite!

     If you’re wondering what will happen at the Family Fun Day this fall, I encourage you to browse the Family Voices newsletter archives.[2]  Every issue represents a community scattered across the country yet close in heart and mind. You’ll see articles written by parents, “experts,” and children of all ages. Poems, drawings, photos and event listings fill up any remaining space.  Themes of friendship, self-respect, empowerment, understanding and raising public awareness show up again and again. You’ll hear the passion behind the words, if you listen to a radio show[3]. And you feel the magic if you attend a Family Fun Day or Annual Conference. Hope to see you there!
Visit www.westutter.org for updates.
Judy

6/25/13

Delayed Auditory Feedback


             Delayed Auditory Feedback, nicknamed DAF, is sometimes helpful for older children, teens and adults who stutter. DAF is easily accessible now as a mobile app. So, I think it’s important to talk about it. DAF is when a speaker does not hear her own voice in real time, but instead, hears it after a teeny tiny delay. Here’s a more scientific description:

            “Briefly, when speech is fed back to a speaker via earphones at 75 to 100 milliseconds delay (one tenth of a second), the speaker will automatically (passively) slow their rate of utterance, flatten their intonation, prolong their words and/or raise their speech volume to cope with the competing signal…

            “The alteration in speech prosody will often inhibit the stuttering response. Unfortunately this does not carry-over very well because the DAF is not paired to the stuttering specifically but to the speech signal in general. It is therefore difficult to maintain this new speech pattern without the DAF/echo-present…

            “The effects of speaking in the presence of your own delayed speech signal remains the single most efficient, immediate and initially passive fluency evoking stimuli available.”   A therapy program may include DAF to help establish greater fluency, then arrange for it to “be gradually reduced so that the individual is speaking with his own internal controls.” [1]

              Many of my clients have tried DAF.  In the late 1990s, I helped several of them obtain free DAF for phone use. In 2001, I discovered the Casa Futura School DAF in a catalogue and bought one. It cost almost $300 (and another $27.00 when a student stepped on the headset).  In 2008, I bought two more devices. It was the most affordable DAF at the time. Then, in 2011, SPEECH4GOOD [2] put DAF into a mobile application. One of my clients purchased it this spring for under $10! Version 3.0 launched this month. These dramatic changes in price and availability prompted me to re-examine the role of DAF for speech language pathologists who treat stuttering.

            My own use of DAF has to do with the nature of my business.  My clients tend not to follow through with the rigorous expectations of speech therapy, so, I find myself writing fewer lesson plans and more educational/problem-solving memos.  That means spending a lot of time learning about issues associated with fluency: concomitant disorders, therapy options, parenting, child development, social communication, literacy, and the ever changing landscape of public education. So, when new student responded particularly well to DAF, I had another reason to re-examine this option.

            Let’s begin with a study published this year.  It found that fluent adults responded to DAF with an increase in stutter-like dysfluencies and sound errors, and, the adults fell roughly into two groups. Adults who experienced the least amount speech disruption with DAF were given the label “low responders.” The authors of the study hypothesized that these low responders “have better developed speech motor skills…[which enabled] fluent speech under the DAF perturbation by using more accurate feedfoward control [3]…[and also] that low responders could be less dependent on auditory feedback…” The other group of adults were greatly affected by DAF.  This second group of adults experienced much more speech disruption and so they were labeled “high responders”. “In contrast, high responders have a high dependency on auditory feedback to maintain fluency under typical speaking conditions…” In the larger scheme of things, these results add “…to the accumulating findings that motor-phonetic encoding involves auditory-to-motor integration.”[4] Perhaps we can hypothesize that our clients respond differently to DAF because of differences in auditory-to-motor integration. I propose that research such as this justifies the inclusion of DAF as an option in speech therapy.

            In truth, the use of DAF for persons who stutter is a topic of contentious debate. I kind of enjoy heated arguments in professional journals. I’m curious to read how deeply held disagreements are thinly disguised as polite discussions. Also, controversy reveals fascinating details. As I understand it, one side of this controversy over DAF declares that decades of evidence prove DAF has a powerful effect on stuttering.[5] The opposing view challenges this research.[6]  The challenge is not trivial.

             The issue of legitimacy appears in a fascinating article about Lionel Logue, the speech therapist portrayed in The King’s Speech.[7]  Highly respected clinicians of the early 20th century were unsuccessful in helping Prince Albert, Duke of York, manage his stuttering. On the other hand, Lionel Logue, with less formal education, was portrayed as experienced, persistent, and successful.

            “Logue’s therapy methods were typical of those used by other clinicians of his time…emphasizing diaphragmatic breathing…muscle relaxation…methods that provided King Albert with a sense of his own fluency [including] masking the feedback the king received from his own voice, …singing through blocks…counseling…[and nurturing] the confidence that he could, with hard work, within the proper therapeutic regimen, stutter less.” [8]

            “To achieve legitimacy, today’s practitioners are encouraged to select methods that have been shown to be efficacious when studied using evidence-based methods (ASHA 2011). For therapies that have not been scrutinized by evidence-based systematic reviews, today’s clinicians are sometimes asked to provide their own documentation of therapy progress, using carefully controlled, objective methods…” [9]

            By now, I’ve left DAF  by the wayside and turned my attention to Evidence Based Practice, commonly known as EBP. For any reader still with me, this will be a short and productive digression. I cracked open a textbook to a chapter about the role of evidence in stuttering treatment.  Let’s begin with a definition. In EBP, “ evidence refers to research findings, and the goal of clinical practice is to find and implement the treatment that represents the best combination of information from three sources : (1) research (i.e., evidence), (2) physician or clinician expertise, and (3) patient or client preferences.” [10]

            I learned about four levels of evidence quality and how, apparently, the only legitimate evidence in the field of stuttering was provided by a few literature summaries, prepared by a few authors, and justified only a few therapeutic approaches. I read about clinician bias and insufficient client input. There appeared to be wholesale disregard for whole lot of research.  I like reading my ASHA journals yet the article discredited such an approach, stating   “reading individual research reports should actually be a last resort for practitioners.” [11]  So, I respectfully disagree. Journal publications provide more than experimental data. They include brief historical reviews, theoretical hypotheses, and intriguing discussion. They illustrate ways to think about complex issues.

            Thankfully, this book chapter ended with some suggestions. “For current stuttering treatments in particular, because the highest levels of evidence hierarchy (systems, synopses, and even multiple meta-analyses and systematic reviews) are not yet widely available, it becomes the responsibility of the clinician to carefully assess the effectiveness of the selected treatment with each client.” [12] EBP can focus on “one clinician-client pair at a time” . Treatment should be “directed toward relieving the client’s ‘source of complaint’” and  “…the ‘most critical components of stuttering treatment outcome evaluation…might be the self-judgments or self-measurements made by the speakers themselves.’”   We can apply this guidance to the use of DAF. [13]

            Now that DAF is widely available as an app, I feel that SLP’s should educate the public about how it might be helpful.  It could be a way for clients to generalize communication goals outside the speech clinic. Apps may be a way for clients to make the self-judgments and self-measurements necessary in a EBP approach to communication change. I hope SLPs will take advantage of this technology, even though it will require some creativity within the ideals of EBP .

           

Epilogue:

            I finished this article feeling somewhat incompetent. Has my profession failed to keep up with recent changes in health care standards?  My mind cleared  after reading an article in the newspaper about the humanities in  modern day higher education. College is becoming a narrowly focused job training program rather than an opportunity for high level, broad based education. “The tragedy of the humanities is that it has become cordoned off: viewed as separate, arcane, and indulgent, instead of something that undergirds the other parts of life. Maybe instead of trying to steer students back to humanities degrees, we should be rethinking the way we teach humanities in general. We could be foisting those thinking skills on everyone, a bit.”[14]  I could definitely relate! An SLP draws from a wide range of knowledge and skills.

           While I commend the profession of speech language pathology for staying grounded in science, speech/language therapy requires a generous amount of "humanness". Think about the personal manner of your child's pediatrician., or even the customer service you received while dining out?  I feel the best of these relationships are based on something almost invisible yet tangible.  The therapeutic alliance is similar for me - invisible yet essential.   Which leads me to my next topic: mindfulness. But first, I'll visit an art museum and remind myself  that life is more than big data.
 
Judy



[1] Richard M. Merson (2003) “Auditory Sidetone and the Management of Stuttering: From Wollensak to SpeechEasy” http://www.mnsu.edu/comdis/isad6/papers/merson6.html
[3] Judith V. Butler (11/7/10) DIVA http://butlerspeechtherapy.blogspot.com/2010/11/diva.html, italics mine
[4] H.C. Chon, et. al. (2013) Individual Variability in Delayed Auditory Feedback Effects on Speech Fluency and Rate in Normally Fluent Adults. Journal of Speech, Language, and Hearing Research, Vol. 56, p. 500 for all quotes
[5] J. Kalinowski & V.K. Guntupalli (2007) On the Importance of Scientific Rhetoric in Stuttering: A Reply to Finn, Bothe, and Bramlett (2005), American Journal of Speech-Language Pathology, Vol. 16, 69-76.
[6] P. Finn, et. al. (2005) Science and Pseudoscience in Communication Disorders: Criteria and Applications, American Journal of Speech-Language Pathology, Vol. 14, 172-186.
[7] Judith Felson Duchan (2012) Historical and Cultural Influences on Establishing Professional Legitimacy: A Case Example from Lionel Logue. American Journal of Speech Language Pathology, Vol. 21, 387-396.
[8] Ibid. p. 391
[9] Ibid. p. 393
[10] A.K. Bothe, et. al. (2010) The Roles of Evidence and Other Information in Stuttering Treatment, in B. Guitar & R.. MCCauley (eds.) Treatment of Stuttering: Established and Emerging Interventions, (pp. 343-354).Baltimore, MD: Lippincott Williams & Wilkins. p. 344
[11] Ibid. p. 349
[12] Ibid. p. 352
[13] Ibid. remaining quotes from p. 351
[14] Joanna Weiss (June 16, 2013) Humanities at Risk: Let’s rethink the way we teach college students. The Boston Sunday Globe, p.K8
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This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.