Treating Children With Down Syndrome Who Stutter
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About the presenter: Judith Eckardt, CCC/SLP specializes in stuttering and is a Board Recognized Fluency Specialist. She has worked as a clinical supervisor in the SSMP program and in public schools and in private practice in Illinois and Arizona. She founded the NSA Metro North chapter in Illinois and was named "Speech-Language Pathologist of the Year" by the National Stuttering Association in 2001. Since moving to Arizona she co-facilitates the Tuscon NSA chapter. She served as the secretary of the International Stuttering Association. To continue working on her own stuttering, Judith was a Toastmaster for several years and completed her CTM Award. |
Treating Children with Down Syndrome Who Stutter
by Judith Eckardt
from Arizona, USA
For the past 10 years, I have been a Fluency Consultant for the Special Education District of Lake County (SEDOL). SEDOL was formed as a special education cooperative in 1960 and at the present time serves 37 school districts in northern Illinois. The geographical area is 400 square miles and extends from north of Chicago to the Wisconsin state line. For the past 45+ years, SEDOL has always been a model special education program for the entire state of Illinois. Each year, I consult on 15-20 children who stutter between the ages of 3 to 17 years. These children are in speech therapy with their referring Speech/Language pathologist and the purpose of the consultation is to aid educational planning for the student. Each consultation involves direct observation of the student and therapist in their home school, therapy suggestions, help in writing IEP Goals, and parental feedback.
Over the years, I have seen a number of children with Down syndrome (DS) who stutter. The parents of these children have a communication net work in place and "word" easily spread that Fluency Consultation was available through SEDOL. Because the Fluency Consultation Service had been written into a federal grant, the local school districts that belonged to the SEDOL cooperative were not charged separately for each child served.
Initially, the students with DS who were referred were high school age with a long history of speech and language therapy in the schools. The high school students spent part of their day in a self-contained special education class room and they were also integrated into regular high school classes. These classes were carefully selected to match their academic and social functioning skills.
In observing older students with DS who also stutter, it quickly became apparent that they exhibited much "shame of stuttering" besides mild to moderate dysfluencies primarily involving repetitions of initial sounds, words, and phrases and less prolongation and blocking. Often eye contact was poor and specific avoidance behaviors existed. These avoidance behaviors involved not wanting to answer questions in class, exhibiting minimal spontaneous verbalizing, and sometimes not wanting to socialize with peers. Another theme that became apparent was their time of onset of stuttering. They all began to stutter at about ages 8 or 9 to 10 years of age and this was at the time that they were beginning to combine 2-3 words and had rapid vocabulary development. Because children with DS typically have reduced oral motor coordination and often middle ear pathology, their speech was difficult to comprehend. Later developing articulation errors existed and impreciseness of speech production occurred.
Then as the "word spread", I began to consult on more children with DS who were younger and in the age range of 11-14 years and 8-10 years. The ones that were in the 11-14 age range in junior high school were similar to the high school students with their types of dysfluencies and shame/avoidance behaviors. The children with DS who were ages 8-9-10 years were just beginning to stutter. Their dysfluencies were mostly easy repetitions involving words and phrases and some initial sounds. Avoidance behaviors were minimal in the class room and eye contact was fairly adequate. They remained consistently verbal in most situations with some dysfluencies being present.
Just this past spring, 2008, I consulted on a 7 year old boy with DS who was described as being "higher functioning" with good language using 2-3 word combinations. He was stuttering using only repetitions---mainly words and phrases and few initial sounds. No struggle behaviors existed, eye contact was excellent, and pragmatic language skills were emerging well. He was described by his Speech/Language Pathologist and Preschool Teacher as "engaging" but "stubborn". Consequently over the years, I have been able to see a fairly large number of Children with DS who Stutter. The following are some of my observations, impressions, and ideas for treatment and consultation:
- Children with DS begin to stutter at ages 8-9 and sometimes as young as 7 years when they are beginning to combine 2 and 3 words and have rapid vocabulary growth are experiencing "normal developmental stuttering". The "Capacity and Demands Model" (Starkweather) seems to really apply to them. We need to treat these Down's Children and their family and teachers as we would "normal developing children" who begin to stutter at ages 2 to 5 to 6. Education about the disorder of stuttering is a primary focus along with traditional fluency enhancement suggestions. Using the Stuttering Foundation of America (SFA) DVD STUTTERING AND YOUR CHILD: HELP FOR PARENTS is highly recommended.
- Most important, we need to try to prevent development of "shame of stuttering" and avoidance behaviors. Parents need to be told that "It's nobody's fault that your child stutters" and that "Stuttering just happens". If the child shows "shame of stuttering" or begins to develop simple avoidance behaviors, he needs to be told "It's OK to have bumps in your speech" and "It will get better". Hopefully, many of the Down's children who are just beginning to stutter, will pass through stuttering as "normal developing children" do with no intervention.
- If we need to provide intervention because of the emergence of traditional "red flag behaviors" such as increased initial sound repetitions, the emergence of prolongation and/or blocking, and reluctance to talk in certain situations or to specific people, focus needs to be upon development of language formulation skills and improvement of oral-motor coordination and planning abilities. The language formulation needs to stress vocabulary development and word-finding skills. Modeling a slower rate of speech using phrasing and pausing and increasing response time in interactions are useful. The oral motor coordination/planning tasks are recommended to be done in very short segments (5-7 minutes) at the beginning and end of a therapy session or worked into a specific time in the classroom routine. Two resources are recommended as follows: "Down's Syndrome and Stuttering", a brochure from the Stuttering Foundation of America (SFA) and SPEECH MOTOR EXERCISES by Daly, Riley & Riley.
- Children with DS often have sensory integration issues which results in their inability to calmly receive stimuli from their environment and process it. Often the presence of everyday stimuli can cause over reactions and an inability to regulate their behaviors. Behaviors that can be exhibited include distractibility, extreme need for routine, repetitive behaviors, frustration resulting in tantrums, and reactivity (excitement). Any kind of excitement, positive or negative, can cause more stuttering to emerge. Working with an Occupational Therapist who is trained in Sensory Integration Disorders is often beneficial for a child with DS who stutters. A useful program is "How Does Your Engine Run" The Alert Program by Shellenberger Williams (Donaher, 2008).
- For the older child with DS who continues to stutter at ages 10-13 and into high school, focus needs to be upon reducing "shame of stuttering" and "avoidance behaviors". They need to be told "It's Good to Talk"; "It's OK to Stutter"; and "It's not Your Fault". In addition, they need to be taught good pragmatic language (social) skills using scripts and role playing and need to be encouraged to communicate in school and at home with stuttering being present. In addition, they need to use methods of self regulation to avoid intense excitement which will increase stuttering. Elimination of identified avoidance behaviors needs to be in focus on IEPs which are discussed with the parents and teachers. An IEP Goal can be very simple such as: "The student will answer two questions per day when called upon during a classroom activity with 80% accuracy". Possibly, handling techniques such as "slowing rate of speech with phrasing and pausing" can be useful but teaching "easy onsets" or other stuttering modifications should NOT be the primary focus of treatment. These "techniques" can be too difficult for the cognitive and oral-motor systems of Down's children and can result in frustration and SHAME of stuttering.
In retrospect over ten years, my journey with the population of children with DS who stutter has been interesting but inverted for my learning. It began with the oldest at age 17 in high school and most recently involved the youngest at age 7 who was just completing a preschool program. I still remember the look of surprise and then a smile from the 17 year old, when I told her "It's OK to stutter" and "It's NOT your Fault". If we can prevent a young Down's child from developing "shame of stuttering" and avoidance behaviors, we may not see him being handicapped by his stuttering at age 17. Hopefully, he will have good functional communication skills with some stuttering and he will say "what he wants, when he wants, and where he wants" with much pragmatic appropriateness. If he can do this, his quality of LIFE will be greatly improved as he functions as an adult in the world beyond school which is his community and family.
If additional information about Down's Syndrome and Stuttering is desired, the following web pages are recommended. Some of the information will be different than what I have written which has mainly been based upon "in the trenches" experience.
- http://www.stammering.org/downs_survey.html -- This is a survey by Monica Bray, Leeds Metropolitan University, UK and looks at dysfluency in Down's Syndrome and different treatment approaches.
- http://www.stutteringhelp.org/Default.aspx?tabid=83 -- This is the brochure DOWN'S SYNDROME AND STUTTERING that is available from the Stuttering Foundation of America (SFA). The brochure is attributed to Monica Bray, Senior Lecturer in Speech Pathology, Leeds Metropolitan University, Leeds LS1 3HE, England (http://www.stammering.org/downs.html) and to the Down's Syndrome Association 155 Mitcham Road, London SW17 9PG, England and The British Stammering Association 15 Old Ford Road, London E2 9PJ, England.
- http://www.dsauk.com/pdfs/Dysfluency,%20Stammering%20&%20Getting%20Stuck%20-%20new.pdf -- This is an article "Dysfluency, Stammering, Getting Stuck" from the Down's Syndrome Association in the UK.
- http://www.stammering.org/odc05_downs.html -- This is an article about awareness and anxiety in young adults with Down's syndrome who are dysfluent. The presenter was Monica Bray (Leeds Metropolitan University, UK) and the author is Jan Logan, City Lit London
- http://www.altonweb.com/cs/downsyndrome/index.htm?page=stutteringab.html -- This is a listing of Stuttering & Down Syndrome Abstracts.
REFERENCES
"Down's Syndrome and Stuttering" brochure published the Stuttering Foundation of America. Original sources are the Down's Syndrome Association, England; the British Stammering Association; and Monica Bray, Leeds Metropolitan University, Leeds, England.
Cooperman, D (08/2008) Down's Children Who Stutter ASHA-DIV 4 List
Daly, Riley, & Riley (2000) SPEECH MOTOR EXERCISES, Applying Motor Learning Principals to Stuttering and Apraxia Pro-ED, Inc.
Donaher, J (08/2008) Children with Down's syndrome Who Stutter ASHA-DIV 4 List
Starkweather, W. (1987) FLUENCY AND STUTTERING Prentice Hall Williams, Shellenberger (1994) "How Does Your Engine Run" The Alert Program Therapy Works, INC
August 5, 2008
