Byron Pitts of 60 Minutes Joins Famous People Poster for National Stuttering Awareness Week, May 10-16 Page 5 T HE S TUTTERING F OUNDATION A Nonprofit Organization SUMMER 2010 Since 1947 ... Helping Those Who Stutter Starkweather Receives Malcolm Fraser Award C. Woodruff Starkweather,Ph.D., received the 2010Malcolm Fraser Award duringthe January meeting of theSpecial Interest Division forFluency and FluencyDisorders. Barbara Amster,Ph.D. made the followingaward presentation: I was asked to give the high-lights of the awardee’s career.This is not an easy feat as hisCV is more than 25 pages long, Dennis Drayna, Ph.D., researcher for the National Institute on Deafness and Other Communication Disorders. See page 2 for the NIDCD press release.but I will try to give you onlythe highlights. Woody Starkweather is an in-dividual whose contributions Researchers Discoverover more than 40 years havepromoted and enhanced public First Genes for Stutteringand professional understanding The mystery behind a complex therapy and early interventionof the nature of stuttering and its disorder called stuttering became with young children remain thetreatment. He has demonstrated a little clearer with the announce- best option for now.”excellence in the field of stutter- ment of the discovery of three “We have long known thating as a master teacher, advo- genes for stuttering by Dennis stuttering runs in families,” sayscate for people who stutter, and Drayna, Ph.D., a director of the Fraser. “We want to emphasizescholar/researcher. In the words Stuttering Foundation and re- that a genetic predisposition forof one of his nominators, “I be- searcher for the National Institute stuttering does not mean a per- on Deafness and Other son will have a lifelong prob-lieve that he is one of only a few Communication Disorders. lem. Early treatment in youngpeople whose contributions to “This research is important be- children can effectively preventthe field of stuttering go beyond cause it’s another indication that stuttering.”a listing of research, teaching, emotional factors such as anxiety Developing an understandingand service accomplishments. or ‘bad parenting’ do not cause of the biological basis of stutter- Continued on page 6 stuttering. It could also point the ing may someday lead to better way for a cure one day,” says early diagnosis, differential Jane Fraser, president of the treatments for people with ge- Stuttering Foundation. netic indicators, and a better un- “We hear every day from par- derstanding of how speech pro- ents worried that they have duction happens differently for caused their child’s stuttering. people who stutter. Although Parents don’t cause stuttering, Dr. Drayna notes that his find- and this research should lift the ings are unlikely to have anyJean Gruss, grandson of SFA burden of guilt from their shoul- immediate impact on treatment,founder Malcolm Fraser, and ders,” Fraser noted. “But because they nonetheless represent aC. Woodruff Starkweather at a cure may be years away, speech giant step forward.the award ceremony.
THE STUTTERING2 www.stutteringhelp.org FOUNDATION 800-992-9392Press Release from the National Institute on Deafness and Other Communication Disorders: Findings Suggest Stuttering, in Some Cases, May Actually be an Inherited Metabolic Disorder Feb. 10, 2010 — Stuttering may be rounding a new marker and identi- some. Large deposits of these sub-the result of a glitch in the day-to-day fied mutations in a gene known as stances ultimately cause joint, skele-process by which cellular components in GNPTAB in the affected family tal system, heart, liver, and otherkey regions of the brain are broken members. The GNPTAB gene is health problems as well as develop-down and recycled, says a study in the carried by all higher animals, and mental problems in the brain. TheyFeb. 10 Online First issue of the New helps encode an enzyme that assists are also known to cause problemsEngland Journal of Medicine. The in breaking down and recycling cel- with speech.study, led by researchers at the National lular components, a process that “You might ask, why don’t peopleInstitute on Deafness and Other takes place inside a cell structure with the stuttering mutations haveCommunication Disorders (NIDCD), called the lysosome. more serious complications? Whypart of the National Institutes of Health, They then analyzed the genes of don’t they have an ML disease?”has identified three genes as a source of 123 Pakistani individuals who stut- posed Dr. Drayna, senior author of thestuttering in volunteers in Pakistan, the ter—46 from the original families and paper. “ML disorders are recessive.United States, and England. Mutations 77 who are unrelated—as well as 96 You need to have two copies of a de-in two of the genes have already been unrelated Pakistanis who don’t stutter, fective gene in order to get the dis-implicated in other rare metabolic disor- and who served as controls. ease. Nearly all of the unrelated indi-ders also involved in cell recycling, Individuals from the United States and viduals in our study who stuttered hadwhile mutations in a third, closely relat- England also took part in the study, only one copy of the mutation. Also,ed, gene have now been shown to be as- 270 who stutter and 276 who don’t. with stuttering, the protein is stillsociated for the first time with a disorder The re- made, but it’s not made exactly right.in humans. searchers With ML diseases, the proteins typi- “For hundreds of years, the cause found cally aren’t made at all. Still, there areof stuttering has remained a mystery some in- a few complexities remaining to befor researchers and health care profes- dividuals understood, and we’d like to learnsionals alike, not to mention people who stut- more about them.”who stutter and their families,” said ter pos- The findings open new researchJames F. Battey, Jr., M.D., Ph.D., di- sessed the same mutation as that found avenues into possible treatments forrector of the NIDCD. “This is the first in the large Pakistani family. They also stuttering. For example, currentstudy to pinpoint specific gene muta- identified three other mutations in the treatment methods for some lysoso-tions as the potential cause of stutter- GNPTAB gene which showed up in mal storage disorders involve inject-ing, a disorder that affects 3 million several unrelated individuals who stut- ing manufactured enzyme into a per-Americans, and by doing so, might ter but not in the controls. son’s bloodstream to replace thelead to a dramatic expansion in our GNPTAB encodes its enzyme with missing enzyme. The researchersoptions for treatment.” the help of another gene called wonder if enzyme replacement ther- Stuttering is a speech disorder in GNPTG. In addition, a second en- apy might be a possible method forwhich a person repeats or prolongs zyme, called NAGPA, acts at the next treating some types of stuttering insounds, syllables, or words, disrupting step in this process. Together, these the future.the normal flow of speech. It can enzymes make up the signaling The researchers estimate thatseverely hinder communication and a mechanism that cells use to steer a roughly 9 percent of people who stut-person’s quality of life. Most children variety of enzymes to the lysosome to ter possess mutations in one of thewho stutter will outgrow stuttering, do their work. Because of the close three genes. Among the next steps,although many do not; roughly 1 per- relationship among the three genes in they are conducting a worldwide epi-cent of adults stutter worldwide. this process, the GNPTG and demiological study to better deter- Stuttering tends to run in families, NAGPA genes were the next logical mine the percentage of people whoand researchers have long suspected a place for the researchers to look for carry one or more of these mutations.genetic component. Previous studies possible mutations in people who They are also conducting biochemi-of stuttering in a group of families stutter. Indeed, when they examined cal studies to determine specificallyfrom Pakistan had been done by these two genes, they found muta- how the mutations affect the en-Dennis Drayna, Ph.D., a geneticist tions in individuals who stutter, but zymes. A long-term goal is to usewith the NIDCD, which indicated a not in control groups. these findings to determine how thisplace on chromosome 12 that was The GNPTAB and GNPTG genes metabolic defect affects structureslikely to harbor a gene variant that have already been tied to two serious within the brain that are essential forcaused this disorder. metabolic diseases known as mucol- fluent speech. In the latest research, Dr. Drayna ipidosis (ML) II and III. MLII and In addition to the NIDCD, researchers at theand his team refined the location of MLIII are part of a group of diseases University of Punjab, Lahore, Pakistan; thethis place on chromosome 12 and called lysosomal storage disorders Hollins Communications Research Institute,focused their efforts on the new because improperly recycled cell Roanoke, Va.; the National Human Genome Research Institute (NHGRI); and the NIH Clinicalsite. They sequenced the genes sur- components accumulate in the lyso- Center contributed to this work.
THE STUTTERINGSUMMER 2010 FOUNDATION 800-992-9392 3 More than 100,000,000 People Reached! Feb. 10 was a blockbuster day with news of the discov- ery of the first three genes for stuttering. Stephanie Nano’s Associated Press wire story reached more than 1,700 newspapers, 5,000 radio and television outlets in the United States, and radio, television and newspaper subscribers interna- tionally. In her article, Nano quotes Dennis Drayna as saying “stuttering is almost certainly a biological problem.” She also included SFA’s Jane Fraser’s comment that “in terms of mythbusters, this is re- ally an important step forward.” Richard Knox’s NPR segment for Morning Edition reached more than 20 million listeners. He interviewed Dr. Drayna extensively as well as speech-language pathologist Kristin Chmela and Fraser. Chmela shared her excitement about the new research not only from the viewpoint of a therapist, but also of a person who stutters herself. Fraser shared with Knox how thrilled her father, Stuttering Foundation founder Malcolm Fraser would have been to learn of this discovery. “He always felt that if he just tried hard enough, he wouldn’t stutter. This research would have lifted a heavy burden of guilt from his shoulders.” The news appeared around the world at light- ning speed with additional articles and seg- ments by Agence France Presse, the China Daily, AAJ Pakistan TV, The Tehran Times, The Watan Daily in Kuwait, the Brisbane Times, and a live interview in Sydney, Australia with Dr. Drayna. Coverage of the discovery of the first genes for Other U.S. outlets featuring the findings include stuttering included the Stuttering Foundation’s HealthNewsDigest, The Philadelphia being featured on marquees in Times Square. Inquirer, The Commercial Appeal, the Arizona Daily Star, El Paso Times, Cleveland Plain Dealer, Newsday, MarketWatch, ABC, CBS, Fox News, CNN, the Miami Herald, and many more too numerous to list. Annual Audit funds and expenditures for the year. be assured that their gifts will go direct- The annual audit of the Stuttering The 3.8% of expenditures for ad- ly to support our program services. Foundation financial reports for 2009 ministration and general expenses and The Foundation is a 501(c)(3) pri- was recently completed by the account- the 7/10 of 1% for fund raising are very vate operating foundation which ex- ing firm of Cannon and Company, low, and since we are fortunate to have pends its funds on its own programs and Certified Public Accountants, an endowment which more than cov- operations and does not make grants to Memphis, Tenn. Following is a recap of ers our overhead expenses, donors can other institutions. Funds expended for: Creation, production, printing and distribution of educational materials . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $503,615 . . . . . . . 36.5% Public information and education . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 300,781 . . . . . . . 21.8% Educational symposia for professionals . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .172,360 . . . . . . . . 12.5% Research on causes/treatment of stuttering and therapy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 254,687 . . . . . . . . 18.4% Maintain Web site and toll-free information hotline . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87,169 . . . . . . . . . 6.3% Total for Program Services:. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,318,612 . . . . . . 95.5% Other expenditures: Administration and general . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 51,984 . . . . . . . . . 3.8% Fund-raising expense . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10,318 . . . . . . . . 0.7% Total Expenditures: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . $1,380,914 . . . . . . . 100%
THE STUTTERING4 www.stutteringhelp.org FOUNDATION 800-992-9392 Jane Fraser, Lady Caroline Michael Palin Prince Charles Egremont and Prince Charles. Prince Charles Supports Stammering Centre Stuttering Foundation President Jane Fraser at- tended a luncheon reception at Clarence House hosted by Prince Charles to announce His Royal Highness’ support of an appeal to fund treatment for children who stutter. The appeal was launched by the Association for Research into Stammering Education Secretary Ed in Childhood (ARSC), our Foundation partner in Prince Charles greeting Balls, Michael Palin and the United Kingdom. Travers and Sandra Reid. Prince Charles. “It was a great honor to meet Prince Charles Travers is Life President and work to increase awareness and support for and co-Founder of ARSC. stuttering,” Fraser said. The Prince of Wales commented, “I am so pleased to be Patron of this Appeal particularly in memory of my grandfather, King George VI, who, as many of you will know, was afflicted with a stammer for many years. His stammer cut him off I think in so many ways from his parents and his brothers and sisters and drove him into himself as I suspect so many stammerers will understand. Above all he experienced that awful fear of feel- Dame Gail Ronson and Renowned author Lord ing different from others.” Major General Bryan Max Egremont with Prince Read more about this event, view press cov- Dutton greet Prince Charles. erage, and find the Prince’s entire speech at Charles. www.stutteringhelp.org. Mrs. Jane Fraser and Mr. Joe FulcherJane Fraser is seen meet-ing Prince Charles on the Prince Charles andTV news. Frances Cook. National Stuttering Awareness Week May 10-16, 2010
THE STUTTERINGSUMMER 2010 FOUNDATION 800-992-9392 5 National Stuttering Awareness Week is May 10-16 In response to the exciting genetic find-ings, our Friends on Facebook let us knowwhat they thought:Ray As I listened to the NPR broadcast regarding the new genetic finding about the cause of stuttering, tears were streaming down my cheeks. Ireflected back on the 60 years of my life, andit just seemed as though so much of theridicule, self doubts and struggles meltedaway; in their stead were knowledge, under-standing and a feeling of inner peace. I nowthink that I know how Atlas must have feltwhen he was allowed to remove the weight ofthe world from his shoulders.Katie As an SLP and Mom to 3 beautiful kids ages 8, 7, and 5 whove all stut- 60 Minutes Correspondent Byron Pitts tered to varying degrees this re- Joins the Team of Famous People search is very exciting! Our oldestand youngest responded positively to modifi-cations at home to promote fluency (modelingreduced speaking rate, daily one on one time,etc.), but for our middle daughter who also Outreach to Pediatricianshad multiple articulation errors and relativelyweak language skills, the modifications The new Pediatrics Review andweren’t enough. She has been in speech for 3 Education Program, PREP The Curriculumyears, and is doing great! As an SLP I knewthat there were many misconceptions about 2010, displays the Stuttering Foundation’sstutterers and their parents. However, until I Physician’s Checklist for Referral.faced these misconceptions as a parent, and This Checklist helps physicians knowencountered people’s reactions to my chil-dren’s stuttering; I didn’t fully appreciate how when and how to refer their young pa-painful they can be to stutterers and their tients to a speech-language pathologistloved ones! for treatment.Susanne Barry Guitar, Ph.D., and Edward G. As a mother of a 12 year old who stut- Conture, Ph.D., compiled this Checklist; ters, I’ve been told numerous times that it is nothing the parent has done and it is part of the bestseller, The Child to cause this stuttering, yet the doubt Who Stutters: To the Pediatrician, pub-was always lingering there. This is great news lished by the Stuttering Foundation.for all who have been affected by stuttering. “Reaching pediatricans with accurate in-Brandon formation on stuttering is one of our most As a teen that stutters I really hope that it is a gene defect and important goals,” said June Campbell, doctors can somehow change it. M.A., CCC-SLP, who represents the I’ve always joked around with my Foundation at the American Academy ofspeech teachers about that and now it mayactually happen. Pediatrics convention every year.Alan As a life long stutterer this could fi- nally lead to better treatment, too late for me but for the younger peo- T-shirts featuring running backs ple this is potentially good news. LaDanian Tomlinson and Darren Sproles have sold out.Jackie As a mom of a 7 year old boy who Greathouse Screen Printing cranked out has struggled with this for 2 years it thousands of these special edition Chargers is heart breaking knowing there is shirts with the headline “Thunderbolt and not a pill, cure or simple fix. And aswith Susanne, I was told there is nothing we Lightning, Very, Very Frightening.”could have done to cause it, you still always Each player donated the proceedsquestion yourself. But this study helps withrelieving some of that doubt. The Stuttering from the sale of the t-shirts to chari-Foundation has provided our family with a lot ties close to his heart. Sproles, anof information & the SLP & my son’s teach- SFA spokesman, chose the Stutteringers have been amazing. Thank you all! Foundation. T-shirt supports Foundation
THE6 www.stutteringhelp.org STUTTERING 800-992-9392 FOUNDATION Award Continued from front page Woody truly cares about people who stutter, and has worked tirelessly to give them a voice through his writing, his leadership, and his creative vision.” Many of his writings have changed the way speech-language pathologists evaluate and treat stuttering. His work on the Demands and Capacities Model has had a profound impact on stuttering prevention and has influenced our under- Malcolm Fraser and standing of factors that contribute to the onset and maintenance of stuttering be- Woody Starkweather haviors, thus setting the stage for multi-factorial views of stuttering. in the 1970s He has had a stellar career as a scholar and researcher. His book Stuttering, co-writ- ten with Janet Givens, received the Choice Magazine Award as the “Best Academic Book of 1997.” This was the first time that this “Oscar of Academic Publishing” had been given in the field of Speech Pathology. Other books he has written are now considered classics in the field including: Stuttering Prevention: a Clinical Method (1990; co-authored with Sheryl Gottwald & Murray Woody Starkweather Woody Starkweather Halfond) and Fluency and Stuttering (1987). He is the and Jane Fraser and Janet Givens author of more than forty articles and chapters concern- ing: learning processes in stut- tering, the Demands and Capacities Model of stuttering, stuttering development, stutter- ing prevention, the assessment of stuttering, the experience of stuttering, and the efficacy of Woody Starkweather Barbara Amster, Ken St. Woody Starkweather stuttering therapy. and Vianne Bjornberg Louis, Hayley Arnold and Sheryl Gottwald In the words of one nomina- and Vianne Bjornberg tor, “his contributions go far beyond the walls of the class- room and clinic. He has made the greatest contribution of anyone I know towards con- necting people who care about stuttering, and developing mechanisms for allowing them Rossanna Portley, Woody Starkweather Jennifer Watson and to learn and support one anoth- Hayley Arnold, Courtney and Vivian Sisskin Susan Cochrane er. He demonstrated this Byrd and Jane Fraser through his leadership as pres- ident of the International Fluency Association, helping develop and nurture it as it grew from a fledgling organization into a recognized av- enue of exchange and communication among the inter- national community in stuttering. He was instrumental in the development of ASHA’s Specialty Recognition program. He served on ASHA’s Special Interest Glen Tellis, Kathy Rossanna Portley and Division 4, Fluency and Fluency Disorders, helping to Scaler-Scott and Shelley Brundage write guidelines and to unify professionals otherwise Marilyn Langevin working in isolation in schools, clinics, hospitals and universities across the country.” His tireless advocacy for people who stutter has given a strong voice to children and adults who stutter. His leadership in the development of support groups provided the model for future support organizations throughout the world. When he founded STUTT_L, an internet discussion list for researchers, clinicians, and people who stut- ter, individuals from all of these groups had a forum to discuss and share ideas for the first time. He has had a profound influence on people who stutter, their families, and Woody Starkweather, the speech-language pathologists who treat them. It is with great respect and admira- Vivan Sisskin and tion that we present the 2010 Malcolm Fraser award to Dr. C. Woodruff Starkweather. Liz Edwards
THESUMMER 2010 STUTTERING 800-992-9392 7 FOUNDATION The recent Disney version of read out the first verse where theLewis Carroll’s classic, Alice in two words ‘strife, strengthened’Wonderland, garnered a great deal of “Rules & Regulations” coming together weremedia hype. Even though the main- Learn well your grammar too much for me,stream media has not made mention And never stammer… and I had tothat Carroll was a person who stut- Eat bread with butter leave the versetered, his family history gives cre- Once more, don’t stutter. unfinished.”dence to the discovery of the genetic ~Lewis Carroll C a r r o l l ’slink to stuttering. Carroll was born to true essential life, expressed in the nephew,parents who were first cousins; al- Alice books and in some poems ….. S t u a r tmost all of their eleven children, When he spoke to these children, he Dodgsonthree girls and seven boys, struggled lost his habitual stammer. He simply Collingwood,with stuttering past childhood. became one of them …… This wrote that his In Lewis perennial childhood, together with uncle “saw thatCarroll: A the fantasy and poetry that some- the impediment ofBiography, au- times expressed it, was his reality.” speech from which he sufferedthor Morton N. In 1859, Carroll undertook speech would greatly interfere with the prop-Cohen stated, er performance of clerical duties.”“The newborn One longtime friend, May Barber,son was the described Carroll’s speech, “Thosethird of what stammering bouts were rather terri-eventually be- fying. It wasn’t exactly a stammercame a family because there was no noise, he justof eleven chil- opened his mouth …. When he wasdren, and if these bloodlines deserve in the middle of telling a story ……credit for the creative genius we he suddenly stopped and you won-know to be Lewis Carroll’s, so per- dered if you had done anythinghaps they bear the blame for the wrong. Then you looked at him andstammer epidemic in Charles’ you knew that you hadn’t, it was allspeech and in the speech of much of right. You got used to it after a bit.his brothers and sisters.” He fought it wonderfully.” Lewis Carroll, the pseudonym of Biographer John Pudney wrote,Charles Lutwidge Dodgson, was “Perhaps his failure to correct hisborn in 1827 to Charles Dodgson speech impediment was the overar-and the former Frances Jane ching symbol of his entire life. HeLutwidge. In addition to being a learned to live with his stammering;writer, Carroll was a mathematician, therapy lessons from James Hunt, he knewa logician, an Anglican deacon and a what it per- who was considered the foremostphotographer. His most notable lit- mitted himerary works are Alice’s Adventures speech correctionist in Great Britain to do, whatin Wonderland, Through the at the time and was estimated to have not, whereLooking Glass, The Hunting of the treated 1,700 people who stutter. In it wouldSnark, and Jabberwocky. The Mystery of Lewis Carroll, biog- snare him Biographer John Pudney ex- rapher Jenny Woolf stated that Hunt and de-pressed in Lewis Carroll and his boasted he taught the patient to stroy theWorld how Carroll’s childlike fan- speak consciously in a way that other effects hetasies were not only the spark for his men spoke unconsciously. sought tocreative genius but also brought him Nothing bothered Carroll more achieve and how to avoid the traps.” into a new about his speech than how it affect- Stuttering did not stop Lewis world where ed his ministry in the Anglican Carroll. He brought to life many last- stuttering did Church. His father had been an ing and imaginative stories for chil- not exist, “This Anglican priest, and Carroll himself dren. It is a shame that his own strug- ‘perfectly hard became a deacon. Upon one occa- gles and family history of stuttering crystal’ con- sion he accepted the invitation to are not well known as they would taining child- preach and recalled, “I got through it further inspire as well as help chil- hood was his all with great success, till I came to dren who stutter.
THE STUTTERING8 FOUNDATION www.stutteringhelp.org 800-992-9392From One Clutterer to Another … Strategies that Helped MeBy Lacey Heid how strained my voice sound- I was diagnosed with a mild clut- ed at the end of my sentencestering disorder when I was 24 years (because I would speak onold. Cluttering is a type of fluency residual air). Then, we lis-disorder, and it often gets misdiag- tened to the recordings of thenosed or undiagnosed altogether. I reading samples.want to discuss what has helped me This was the turning point inimprove my speech. Hopefully, my speech therapy, because Ithis will help others who clutter heard the difference. I heard thefind some strategies that may help pausing. I heard every sound in every word. I understood every-improve their speech, as well as The Stuttering Foundation thing I had said. That is the pointshed some light for SLPs on ways offers a DVD and brochure when I realized that I could talkto help their clients with fluency on cluttering. more slowly and I could be un-disorders. derstood. All I had to do was take As I got older, my peers started unaware of them, and there- these strategies and apply themreacting to my speech rate. fore, has a hard time self-mon- to everyday conversation.Although I had a lot of friends, itoring. Cluttering is often mis-there would be that occasional per- Self-Monitoring — This was diagnosed, or in my case, undi- by far the most important strate-son that playfully mocked my agnosed, even though onset“stuttering” or mentioned that I al- gy for me. I needed to be able to can occur as early as the hear my own speech rate as I wasways talked too fast. preschool years. In the working world, it be- speaking and adjust my speech After my initial speech and accordingly.came worse. Co-workers and language evaluation, my SLPcustomers had a hard time under- If I couldn’t hear myself omit- (who at the time was a student ting syllables, or hear myselfstanding me, and it became more clinician) and I began to work onobvious to me as their comments “cramming” words together, I numerous strategies focusing on wouldn’t be successful in stop-became more numerous. I had slowing my speech rate, and be-difficulties speaking to authority ping or preventing myself from coming more intelligible. cluttering.figures, as well as talking on the Although I understood thephone. I was constantly told to This is where the uncomfort- point to the exercises, I didn’t able recordings of my voicespeak more quietly, and “what’s” appreciate their meaning untiland “huh’s” became a more fre- helped so much, because I was the day I walked into the room able to feel myself performingquent response from my listen- and my SLP told me we were the action of speaking moreers. At age 24, I realized how going to record parts of the ses- slowly, and then I was able tomuch I was letting my speech sion, and then play the record- play back and hear myself speakhold me back from better jobs ings back so that I could hear at a normal rate. There was aand opportunities. I wanted to be myself talk. huge positive reinforcementan overall better communicator. I Not many people like hearing when I discovered this.decided to start speech therapy. the sound of their own voice, my To read more about what And that’s when I learned the being one of them, so I was high- worked for Lacey, go to www.stut-truth. I was not a stutterer at ly reluctant, but I turned to my teringhelp.org.all. In fact, I was a clutterer. positive attitude. It was for myWhile stuttering is noted by own good.repetitions, prolongations,blocking, and secondary “es- She had taped our casual conversations at the start of the T he Stuttering Foundation of America is a tax-ex- empt organization undercape” behaviors, cluttering is session, and then she taped my section 501(c)(3) of thenoted by excessive normal dis- reading samples using the Internal Revenue Code andfluencies, rapid bursts of strategies that we were focus- is classified as a private op-speech (“excited speech”), and ing on. When she replayed our erating foundation as de- fined in section 4942(j)(3).slurred/omitted syllables. conversations, I heard it. I Charitable contributions While a stutterer can usually heard how fast I spoke. I heard and bequests to the Foundation arehear and feel their speech dis- the missing parts of the words, tax-deductible, subject to limitations the rapid speech, and I heard under the Code.fluencies, a clutterer is usually
THE STUTTERING FOUNDATION 800-992-9392 9SUMMER 2010 Workshopper Reaches Spanish Speaking Community Judi Cheng, M.S., CCC-SLP, a ? Stuttering Foundation Eastern Did You Know? 2009 workshopper appeared re- The Stuttering Foundation has cently on Univision Television numerous resources in Spanish N e t w o r k ’s as well as a Spanish Web site, Despierta www.tartamudez.org. America for a segment on Spanish speaking ed the mother of a 6-year old boy. kids who stutter. “I want more information on how Immediately following to help him with teasing, and I Cheng’s interview with Yahaira need the name of a therapist.” Maldonado, the Foundation Another concerned parent Another began receiv- ing hundreds emailed, “My child Great Year! of calls and e-mails from began stut- tering when The Stuttering Foundation Spanish he was 5 andPSAs are in national and re- speaking now he is 7.gional magazines as well as people look- He is gettingnewspapers across the country. ing for help therapy twoReaders may spot an ad featur- with stutter- days a week,ing Winston Churchill, Nick ing. but we needBrendon, conservationist Alan One view- more help.”Rabinowitz and many others. er wrote, “I “My daugh- A new PSA with San Diego am 17 years ter is 6-yearsCharger Darren Sproles has old. I have Stuttering Foundation workshopper Judi old and has abeen sent to sports magazines been stutter- Cheng, M.S., CCC-SLP, speaks about stut- slight stutterfor use in upcoming issues. ing since I tering on Univision’s Despierta America. when she Recent PSAs appeared in Good was about 5. My mother saw speaks Spanish and sometimesHousekeeping, Redbook, ESPN, your interview on TV. We saw on when she speaks English. Can youSeventeen, Popular Mechanics, your website that you can give us send me information to help?”Time, American Baby and news- a list of people that might be able asked a mother from New Jersey.papers including the Philadelphia to help.” To view the Univision DespiertaInquirer, New York Post, and the “My son is the only one who America segment on stuttering,NY Times Magazine. stutters at his school,” comment- visit www.stutteringhelp.org. The Stuttering Foundationthanks these publications for thisvaluable donated space thatreaches thousands and thousandsof readers looking for help. Gregory’s Basic Principles on DVD Clinicians are still receiving training in the treatment of stuttering by the expert speechHelp Available in Croatian language pathologist, Hugo Gregory, The Child Who Stutters: Ph.D., through footage shot at Texas To the Pediatrician has Christian University in 1998. The been translated into new DVD, Basic Principles of Croatian by Dubravka Stuttering Therapy, is now available Prpic. It can be down- at www.stutteringhelp.org. The loaded from our Web Foundation is grateful for the tireless site, www.stutter- efforts of Carolyn Gregory, June Campbell, inghelp.org. Click on Diane Hill, Jennifer Watson and Kristin Chmela“Translations” on the left. who worked to make this DVD a reality.
THE STUTTERING10 FOUNDATION 800-992-9392 www.stutteringhelp.org Keep a Positive Attitude ily. It’s easy for me to talk to peo- I’ve been a stutterer for as long ple without bumping when I as I can remember. It has always quote others, and it makes me weighed down my shoulders like happy when I tell stories to peo- I’m wearing a backpack full of ple that make them laugh. rocks. It has stopped me from try- It’s also good to have a sense of ing out in plays, doing extra-credit humor when other kids say things oral reports, running for 7th grade that hurt your feelings. You just officer, and, in general, speaking have to remember that they don’t aloud to any kind of audience. understand and haven’t learned how When I came to the Center, I was to treat anyone with respect.Carol Ecke was ably assisted by Jennifer able to learn some new techniques to Remember, bullies have moreWatson, Valerie Johnston, Tara Hepler, control my stuttering, ones that actu- personal issues than other kids.Montse Vallejo, and Geoff Coalson at ally worked. Sadly, although “pro- Ignore them and remember alwaysthe marvelously successful convention of longation”, “pull outs”, and “easy how great you are.the Texas Speech-Language-HearingAssociation. Russ Hicks of NSA provided bumps” had helped my stuttering, London, 12this fine photo. they didn’t really help my confi- dence. I could use the tools and speak What Listeners Should Know okay, but it didn’t mean I wanted to One percent of the world’s popu- talk to an audience. lation stutters as adults and 1 in So Maria gave me a challenge to every 20 children have a stuttering volunteer to read at school, offer to problem. We need time to get out pray at church, and raise my hand if I what to say, and if you insult one of knew the answer to a teacher’s ques- us, are you going to insult all 6.7 tion. This chal- million of us? lenge terrified We need time me, and at first to get our it was like tor- words out, andDarlene Sommers, Kavita Kaul, and Maryann ture. Gradually, if you ignoreKaminsky at the conference of the Speech- I realized that us, can you beLanguage-Hearing Association of Virginia. each time I did certain you it, it became didn’t miss easier and easi- something im- er. Soon it was portant? Do no big deal Students in the Wasatch Children’s Stuttering not make as- when I spoke or Management Program wrote these stories s u m p t i o n s read in class, and presented them to the group on selected about people and now I even topics regarding stuttering. who stutter, find it fun. you might be Stuttering is what makes me an quite a bit wrong. individual, and I’m not ashamed I am saying this because I do not that I’m a little different from ev- want people to assume I have a eryone else. mental issue, or that I forgot my We should keep practicing our name, just because I got stuck onCharlie Osborne and Jessica DeMille at techniques to stay fluent, but most of the first C. Give us time, let usthe conference of the Wisconsin Speech- speak!Language Pathology and Audiology the stuttering is in your heart. WhenProfessional Association. you release the embarrassment, the Clay, 13 sadness, and the stress of stuttering out of you, it will become little more Feels Like a Maze than the nose on your face, the shape I’m in a maze, trying to find my of your eyes, the color of your hair. way out. It seems like, there’s no Yes, I stutter, but I don’t care. It’s way out of this never-ending what makes me, me. maze. Every stutter, block, and Megan, 14 struggle makes me more con- fused. The only way out is to use Sense of Humor Helps my techniques, prolongation, I think it’s good for everyone pull-outs, easy/fake stuttering,SFA’s Terri Jones prepares the booth at to have a good sense of humor. I and responding to my moments ofthe Georgia Organization of School- stuttering. Finally, I’ve found myBased Speech-Language Pathologists like Jeff Dunham and DaneBest Practices Conference in March. Cook. I like to quote some of way out of the maze.Patty Reed joined her at the booth. their lines to my friends and fam- Devan, 14
THE STUTTERING FOUNDATION 11SUMMER 2010 800-992-9392 Turning a Negative Into a PositiveBy Dylan Levin knew that I stuttered and that could tell that it was directed at bothered me because what if I what happened to me. NobodyTwo years ago Dylan Levin asked stuttered during the spelling bee? knew what I had just gonefriends and family to donate to the How would people respond? through and nobody understoodStuttering Foundation as a way tohonor his Bar-Mitzvah. Now as a high At 2 p.m., it was time for the my situation.school student, he is busy making spelling bee. I walked down the Later that night, the phone rangspeeches and presentations without let- stairs to the cafeteria where it and it was Allie’s teacher callingting stuttering get in the way. The fol- was being held and I took my to discuss what happened atlowing essay is a podcast script Dylan seat on the stage. The problem school. I did not tell my mom be-gave recently at his school. was that I psyched myself out. I cause I did not want her to get in- As many of you knew that I was going to fail. volved. I did not want her to get know or don’t know, I One by one the kids spelled and upset. The truth is that I probably have a speech disflu- one by one they got it right. My should have told her the moment ency called stuttering. turn. The word was population. I got in the car, right after school. I have had this since Dead silence. I must have said Mr. L told my mom the whole sit- the age of four. My uh and um about a hundred uation, and she wanted to come stuttering is an invol- times to make it seem like I was- into his class, to talk with theuntary movement, which I can’t n’t stuttering. And the thing was kids about my disfluency andcontrol. Stuttering was never an that I knew how to spell the how to be accepting of a personissue at school; I always participat- word, but I just could not get the with disabilities. I know that myed in class and I never felt that there word out. Population is not a mom, when it comes to mywas a problem until one day in hard word to spell. Then the speech disfluency, will alwayssixth grade. That was the day when have my back.I realized that my stuttering was Four years have passed sincenever going to go away and there- this happened and now it is onlyfore I had to work hard on my a memory lost in the pages ofspeaking abilities. my life. My speech from that It happened at my school time has improved and I owespelling bee. There were two that partially to Allie. If she hadways people got to be a part of not laughed then I probablythe spelling bee. The first one would not have experienced realwas where you compete with vulnerability. Every person thatpeople in your own advisory and does stutter, has his or herthen the winners go against peo- most horrible thing happened, human form wrapped in a blan-ple from all of the other advi- laughter. Never in my life had ket of vulnerability all the time,sories. Lucky for me, I won the anyone really laughed at me like but it is how we persevere dur-spelling bee for my advisory. I this girl did. Her name was ing these hard times that trulydidn’t think about the fact that I Allie, and I will never forget her. define us. I know now that Iwould have to spell words in I purposefully spelled the word would not be the same personfront of the school at that mo- wrong, just to get out of this em- that I am today if I did not stut-ment in time because I was just barrassing situation. I went into ter. I carry around this memoryhappy that I had won. The day the bathroom and started to cry. I with me always because it is awore on and I started to become was mortified and angry. I began reminder that I must keep onreally nervous because I had asking God why me, why did you persevering and I must keep onnever given an announcement or give me this terrible stutter? Why talking because if I let this stut-done anything, really, in front of did you make people laugh? I ter overcome me, then I havethe entire school. I would partici- walked backed into the cafeteria lost all hope. What I am trying topate and give presentations in my and sat in the back. I did not want convey is that people must per-class and there I felt very com- to show myself to anyone. When severe to overcome any obstaclefortable. But speaking in front of I came back the teacher gave that they are faced with. Maybethe whole school made me ner- some weak speech about being one day I will not have a speechvous. I was nervous because only respectful to all of the people in disfluency, but until then, I willthe people in my grade really the spelling bee, but everyone keep living and talking.
THE STUTTERING12 www.stutteringhelp.org FOUNDATION 800-992-9392Dear SFA: Reader ResponseSend letters to SFA, P.O. Box 11749, Memphis, TN 38111-0749 or e-mail firstname.lastname@example.org.Friendships Help If you do stutter, don’tDear SFA: worry, it’s all normal. Even I feel bad when I stutter. I some grown people do it.can’t express what I want to Everyone stutters some-say. When I repeat a word I time in their life. If youget frustrated. When this have a friend who stutters,happens, I stop and think don’t tease them about it.about what I’m going to There are some strategiessay. Sometimes this helps people use to help themselves.me and sometimes it does- Like me, I worked on using an’t. If I’m stuttering a lot, rubber band and stretching outmy friends give me signs to the first word so I don’t stutterdo smooth speech. This in the middle of the sentence.helps me control my stutter- My name is Robbie. I’m 11 years old and I’ve There’s also using slow, easying. Sometimes I tell my- been in speech for three years. I work on my speech to help the muscles in stuttering by using strategies. The first one is your mouth not get all tightself to do smooth speech. using a speech mountain to remind me to startRobbie, 11 and clenched. All of these with air and then come out with my word. the strategies can help you to stopWinston-Salem, N.C. second is “think time”/“black out.” It helps me think of words before I start sentences. Another stuttering if you just take yourJust Like Dancing thing I like to use is eye contact because it helps time and slow down. Dear SFA: the person I’m talking to know that I’m not fin- Plenty of people stutter. I don’t like it when people ished talking. So, if you stutter, you can try Although some have differ-ask me, “Do you stutter?” If using these strategies. ent reactions when they dothey ask me, I say, “Yes, I it. Some just continue on Robbie, 11 and don’t pay attention.do,” and keep on going. I getembarrassed when I stutter, Tallahassee, Fla. Others feel that they’rebut I always try to keep going. going to get nervous and I think stuttering is like start to get worried, and thatdancing. If you practice just makes it worse. To stopdancing you will become you need to be calm andbetter, just like if you prac- don’t even think about it.tice the tricks you learn to If people bully you or teasenot stutter, you get better at you because you stutter, justnot stuttering. walk away and don’t do any- It is all right to stutter. So thing to them because some-many people do it, even times the people who bullycelebrities do. If someone and tease are usually themakes fun of you or doesn’t people who do stuff like that.talk to you because you My name is Jordan. I am 10. I stutter with cer- They do it to let out theirstutter, that is their loss. tain letters such as W, L, and B. But I have anger on other people in-Keep your hopes up and found some strategies to help me. I’ve found stead of trying to calm down.keep on practicing. DON’T backing out of tension and think time and they If you just don’t worryFEEL ALONE! help my stuttering! People used to make fun of about stuttering, you willCourtney, 10 my stuttering. But I did a presentation in our have a good time and notGreenwich, CT class about stuttering. Now they don’t make fun even know you do it. So, if of me. Now that I found some speech strategies you stutter, don’t even and the kids in my class know why I stutter, I worry about it and you willTips for Teasing feel awesome about stuttering!Dear SFA: be a happy person. Do you stutter? I know I Jordan, 10 Maxdo. If you do, do your Tallahassee, Fla. Carmel, Ind.friends tease you about it? Continued on page 13
THE STUTTERINGSUMMER 2010 FOUNDATION 800-992-9392 13Letters Continued from page 12 sister is 8. My friends make “never mind” and I walk away. fun of my voice because I stutter. My brother also stutters. MyFeeling Confident They just copy my voice. I have sister doesn’t stutter. I haveDear SFA: been stuttering for about three learned some strategies to not Hi, my name is Kyle and I am years. I mostly stutter at home. stutter. One strategy is called8 years old. I’ve been stuttering Sometimes people tell me to “spit “bouncing.” Bouncing meansfor as long as I can remember. I it out.” That does not help me say that I might repeat a sound ordidn’t feel confident, but then what I want to say. I usually say word, but I do it in an easy way.started speech class, My speech teacher letsand learned bouncy me play games abouttalk. Now, I feel more talking. I try to ignoreconfident and raise my people who copy my stut-hand in class, and talk tering. I am a great kidto people more. and I really don’t careBecause when I didn’t about my stuttering. I tryhave speech class, I to not worry about thedidnt want to talk. people who make fun ofKyle, 8 me.Denver, Colo. Nathan, 9 Anamosa, IowaLearningAbout Me Eye ContactDear SFA: My name is Chetan. I am 10 years old and I am a My name is Luke and good person. I live in a brick duplex in Wichita, Kan. Works I like cars. In my picture, on the first road I am hav- Dear SFA:I am in 4th grade. When My name is Willie. I likeI realized I sounded dif- ing a good day. On the second road, I am not having a good day and my speech is bumpy. I need to take a to play video games. Iferent I was five. It have been stuttering sincesounded like I ran out of deep breath and relax. I think going to speech is fun. Chetan, 10 I was 3. I go to speechair, and it gets quieter, class. I think it is fun. Wequieter, and quieter. I Wichita, Kan. have worked on keepingfelt like I hated it. It is eye contact. Eye contacteasier when I am read- is important because iting and not talking. I am helps others know whencalm when I am writing. you are finished talking. II am less calm in math also learned about theclass when the teacher speech machine. I don’tcalls on me. I stutter like stuttering. I stuttermore when she calls on more when I am in myme. If we are in a crowd classroom or talking toI stutter more because I adults. It makes me feelam around more people. better to know that otherThis is my story. kids stutter too.Luke WillieDelaware Alabama Continued on page 16Strategy HelpsDear SFA: I’m 91⁄2 years old and my name is Asta. I live in My name is Nathan. I Tallahasse, Fla. Stuttering makes me feel unhappy be-am 9 years old and I am cause children in my school make fun of me. I like toin third grade. I like to use easy beginnings because they help me avoid stut-play video games and I tering. I also back out of tension when I am about tolike to play baseball. I stutter. It makes my speech smoother. I gave a presen-also like to ride my bike tation about stuttering to my classmates. Now theyand I can ramp really don’t make fun anymore. And because of my presen-high. I have one brother tation, stuttering is much easier for me!and one sister. My Asta, 91⁄2brother is 10 and my Tallahasse, Fla. Willie drew this picture.
THE STUTTERING FOUNDATION P.O. Box 11749 • Memphis, TN 38111-0749 tteringNatio nal Stu k WeeAw areness ! 10-16 i s May www.stutteringhelp.org • 800-992-9392 • www.tartamudez.org Letters Continued from page 13 Books 4Leap of Faith by Richard Benyo. (2009) No One’s Fault Pennsylvania Heritage Books. Available at Dear SFA: www.amazon.com. 4Treatment of Stuttering, Established and I hope kids around the Emerging Interventions by Barry Guitar and world will read this. I am 10 Rebecca McCauley. (2010) Lippincott, Williams, and Wilkin, Baltimore. years old. I love to play www.lww.com. sports. I play baseball, soc- 4Research on Stuttering in Pre-school and cer, football, and basketball. I School Children by Zbigniew Tarkowski and Ewa Malgorzata Skorek. (2009) University started stuttering when I was Zielonogorski Press, Poland. 5. I know what it feels like to Fourth-grader Rachel of Collegeville, 4Clinical Decision Making in Fluency be picked on by other kids. It PA, drew cars that are stuck. Disorders by Walter H. Manning. (2009) Delmar Cengage Learning, Clifton Park, NY. made me mad. www.cengage.com. I go to speech class. I have 4Practical Intervention for Early Childhood Stammering by Elaine Kelman and Alison learned that it is not my fault This Nicholas. (2008) Speechmark Publishing, or my parents’ fault that I drawing Ltd. Milton Keynes, U.K., www.speech- stutter. There are other kids is by mark.net. 4Stammering, Advice for All Ages by Renee in the world like me. It’s not Adam, Byrne and Louise Wright. (2008), Sheldon their fault either. There are 5th grade, Press, London, www.sheldonpress.co.uk. of Trappe, 4Speak Freely: Essential Speech Skills for even famous people who School-Age Children Who Stutter by Mark stutter. I have found that PA. Allen, Ph.D., (2007) Speak Freely singing helps me talk better. Publications, Evanston, IL , www.cfst.com. 4Beyond Stammering, Revised edition by Try it! It might work for you. David Maguire. (2008) Souvenir Press, Rae’ Quan, 10 London. 4Stuttering: An Integrated Approach to Its Alabama Nature and Treatment, Third Edition by Barry Guitar. 2006. Available from Lippincott, Williams & Wilkins, 800-638- 3030, www.LWW.com. See our Web site, www.stutteringhelp.org, for a complete list of books. This newsletter is published quarterly. Please e-mail address changes and story ideas to email@example.com. Volume18, Issue 3 Kids, find more inspirational Renee Shepherd . . . . . . . . . . . . . Editor stories, fun articles, and videos Rae’ Quan drew this picture of Scot Squires . . . . . . . . . . . . . . . . Designer on our Web site, www.stutter- baseball and basketball, which are Special thanks to Joan Warner, Patty Reed, inghelp.org. We have a page two sports he enjoys playing. Susie Hall, Pat Hamm, Lisa Hinton, Terri just for you! Jones, and Carol Ecke.