1. Tourette Syndrome (TS) Dana Barvinchak “An Overview of Tourette Syndrome for Teachers”

2. Learner Objectives Participants who complete this seminar will be able to: Define symptoms and characteristics of Tourette’s Define symptoms and characteristics of Tourette’s List positive ways to address behaviors related to Tourette Syndrome in the classroom List positive ways to address behaviors related to Tourette Syndrome in the classroom List necessary supports that a student with Tourette’s may need in the classroom List necessary supports that a student with Tourette’s may need in the classroom

3. Glossary Attention deficit disorder (ADD) – characterized by short attention span and impulsivity Attention deficit disorder (ADD) – characterized by short attention span and impulsivity Attention deficit hyperactivity disorder (ADHD) – similar to ADD but with a hyperactive component Attention deficit hyperactivity disorder (ADHD) – similar to ADD but with a hyperactive component Co-morbidity – Two or more diagnoses occurring simultaneously Co-morbidity – Two or more diagnoses occurring simultaneously DSM – IV-TR – Diagnostic and Statistical Manual of Mental Disorders (4 th edition) DSM – IV-TR – Diagnostic and Statistical Manual of Mental Disorders (4 th edition) Provides categories and diagnostic criteria for various disorders or mental health diagnoses Provides categories and diagnostic criteria for various disorders or mental health diagnoses

4. Glossary Continued “Tic” – involuntary body movements and/or vocalizations “Tic” – involuntary body movements and/or vocalizations Coproialia – use of obscene words or phrases Coproialia – use of obscene words or phrases Copropraxia – use of unacceptable gestures Copropraxia – use of unacceptable gestures Obsessive Compulsive Disorder – characterized by persistent thoughts or compulsions to perform certain acts…feelings that you MUST complete a certain routine in a certain way or a set number of times Obsessive Compulsive Disorder – characterized by persistent thoughts or compulsions to perform certain acts…feelings that you MUST complete a certain routine in a certain way or a set number of times Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp. http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp

5. History Gilles de la Tourette was a French neurologist. Gilles de la Tourette was a French neurologist. Provided the first formal description of Tourette’s Syndrome in 1885 Provided the first formal description of Tourette’s Syndrome in 1885 Defined it as an inherited neurological disorder characterized by the presence of vocal and motor tics Defined it as an inherited neurological disorder characterized by the presence of vocal and motor tics Prior to this, people with tics were believed to have been possessed by the devil. Prior to this, people with tics were believed to have been possessed by the devil. Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp. http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp

6. Definition Diagnostic criteria includes: presence of multiple motor AND one or more vocal tics presence of multiple motor AND one or more vocal tics symptoms occur nearly every day or intermittently for a period of one year symptoms occur nearly every day or intermittently for a period of one year impairs functioning impairs functioning childhood onset childhood onset symptoms not related to medications or another medical condition symptoms not related to medications or another medical condition Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. America Family Physician. Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html. http://www.aafp.org/afp/990415ap/2263.html

7. Examples of tics Simple Tics Vocal -Throat clearing -Sniffing-Barking-Coughing-Yelling-Hiccupping-Belching -Animal sounds Motor -Eye blinking -Sticking tongue out -Head turning -Muscle tensing -Flexing fingers -Kicking

8. Complex Tics Vocal -Repeating parts of words or phrases -Talking to self -Different intonations -Obscene word usage Motor -Flapping arms -Facial grimacing -Adjusting or picking at clothing -Jumping -Shaking feet -Pinching-Poking-Kissing-Spitting Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. American Family Physician. Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html.http://www.aafp.org/afp/990415ap/2263.html

9. Prevalence Occurs 3 to 4 more times in boys than girls Occurs 3 to 4 more times in boys than girls Affects 1 in 1,000 or.10% of the population of the United States Affects 1 in 1,000 or.10% of the population of the United States Symptoms first noticed in childhood Symptoms first noticed in childhood Occurs in all populations and all ethnic groups Occurs in all populations and all ethnic groups Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp. http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp

10. How we identify/diagnose the problem Diagnosis is made through observations and interviews with the patient and caregiver(s), examination of family history, and ruling out other secondary causes of tics. Diagnosis is made through observations and interviews with the patient and caregiver(s), examination of family history, and ruling out other secondary causes of tics. Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from http://en.wikipedia.org/wiki/Tourette_syndrome. http://en.wikipedia.org/wiki/Tourette_syndrome

11. Factors Complicating Diagnosis People with Tourette’s often present with an extreme range of symptoms – often misdiagnosed or under-diagnosed People with Tourette’s often present with an extreme range of symptoms – often misdiagnosed or under-diagnosed People with Tourette’s may also be diagnosed with or have symptoms of : People with Tourette’s may also be diagnosed with or have symptoms of : ADD/ADHD (approx. 50%) ADD/ADHD (approx. 50%) Anxiety Anxiety Depression Depression Learning Disabilities (approx. 25-30%) Learning Disabilities (approx. 25-30%) OCD (approx. 25-40%) OCD (approx. 25-40%) *Examples of co-morbid diagnosis *Examples of co-morbid diagnosis Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. American Family Physician. Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html. http://www.aafp.org/afp/990415ap/2263.html

12. Biological factors Research has shown a genetic predisposition in relation to Tourette’s Research has shown a genetic predisposition in relation to Tourette’s Specific gene is not known presently Specific gene is not known presently Not everyone that inherits the genetic vulnerability will show symptoms Not everyone that inherits the genetic vulnerability will show symptoms Inherited neurological disorder Inherited neurological disorder Neurotransmitter, dopamine, found in excess Neurotransmitter, dopamine, found in excess Bagheri, M.M., Kerbeshian, J., & Burd, L. (1999). Recognition and management of tourette’s syndrome and tic disorders. American Family Physician. Retrieved September 13, 2007, from http://www.aafp.org/afp/990415ap/2263.html. http://www.aafp.org/afp/990415ap/2263.html

13. Family factors Parenting style will impact the frequency in which the tic occurs. Parenting style will impact the frequency in which the tic occurs. Family support tremendously important!! Family support tremendously important!! Families must also be their child’s advocate. Families must also be their child’s advocate.

14. School factors Are there school factors that may cause the tic to intensify? Are there school factors that may cause the tic to intensify? YES! YES! Anxiety, Stress, and Fatigue Anxiety, Stress, and Fatigue

15. School Factors How should a teacher properly discipline the behavior? How should a teacher properly discipline the behavior? DON’T DO IT! DON’T DO IT! Disciplining the behavior is NOT going to reduce the frequency of the tic! Disciplining the behavior is NOT going to reduce the frequency of the tic!

16. School Factors Teasing and bullying occur…tic behavior increases…teasing and bullying increases – Vicious cycle! Teasing and bullying occur…tic behavior increases…teasing and bullying increases – Vicious cycle! BREAK THE CYCLE! BREAK THE CYCLE!

17. How the problem affects school life Depends on the specific child and his/her specific strengths and weaknesses Depends on the specific child and his/her specific strengths and weaknesses Most children with Tourette’s will need some type of academic accommodation or necessary support. Most children with Tourette’s will need some type of academic accommodation or necessary support. Accommodation for visual-motor integration problems– Assign a buddy as a “note taker” or “homework partner,” allow extra time for test taking, allow use of a calculator for rote calculations, etc. Accommodation for visual-motor integration problems– Assign a buddy as a “note taker” or “homework partner,” allow extra time for test taking, allow use of a calculator for rote calculations, etc. Accommodation for language problems – provide visual input as well as auditory whenever possible, repeat directions and then have student repeat them again, when reading give the child a card with a cut out “window” so that they are only viewing one word at a time, etc. Accommodation for language problems – provide visual input as well as auditory whenever possible, repeat directions and then have student repeat them again, when reading give the child a card with a cut out “window” so that they are only viewing one word at a time, etc.

18. How the problem affects school life Accommodation for attention problems – seat the child in front of the teacher, seat the child away from windows and doors, short assignments with frequent checks, etc. Accommodation for attention problems – seat the child in front of the teacher, seat the child away from windows and doors, short assignments with frequent checks, etc. Knoblauch, B. (1998). Teaching children with tourette syndrome. ERIC Digest. Retrieved September 13, 2007, from http://www.ericdigests.org/1999-4/tourette.htm. http://www.ericdigests.org/1999-4/tourette.htm

19. Legal safeguards in Pennsylvania Students with Tourette Syndrome would be covered under Section 504 of the Rehabilitation Act of 1973. ■The school district must provide “necessary supports” for the child to participate in the educational programs at the school ■Equal access to all extracurricular school programs and activities *Students with more severe tic behaviors may need further supports through the use of an Individualized Education Plan. Education Law Center. A comparison of the rights of a child with a disability who needs “special education” and a child who is a “protected handicapped student.”

20. What YOU can do to help Remember: People with Tourette’s are not all alike! Remember: People with Tourette’s are not all alike! Learn more about how Tourette’s impacts your student. Learn more about how Tourette’s impacts your student. Talk to the student’s family about positive ways to handle school stress and what works for the particular student. Talk to the student’s family about positive ways to handle school stress and what works for the particular student.

21. What YOU can do to help TOLERANCE! TOLERANCE! Ignore the tics Ignore the tics Allow the student to have a permanent pass to leave the classroom as needed so that he/she may “get the tics out” if/when they become too overwhelming Allow the student to have a permanent pass to leave the classroom as needed so that he/she may “get the tics out” if/when they become too overwhelming Provide a private place where the student can go to relax and/or release tics Provide a private place where the student can go to relax and/or release tics Allow things to be completed through a different medium ---presentations that are videotaped at home if oral recitation is problematic for the student Allow things to be completed through a different medium ---presentations that are videotaped at home if oral recitation is problematic for the student

22. What YOU can do to help Provide the student with extra time on certain activities and/or the option to take a test in a different location Provide the student with extra time on certain activities and/or the option to take a test in a different location Provide a peer education program (with permission from student and family) to reduce any bullying of teasing. If this continues, provide additional adult supervision during the less structured times of the day Provide a peer education program (with permission from student and family) to reduce any bullying of teasing. If this continues, provide additional adult supervision during the less structured times of the day Alternatives/reasonable accommodations Alternatives/reasonable accommodations MODEL ACCEPTANCE MODEL ACCEPTANCE

23. What to avoid Losing your patience Losing your patience Punishing the child for his/her tic Punishing the child for his/her tic Punishment will not make the tic go away. You are ultimately punishing the child for something that he/she cannot control. Punishment will not make the tic go away. You are ultimately punishing the child for something that he/she cannot control. Knoblauch, B. (1998). Teaching children with tourette syndrome. ERIC Digest. Retrieved September 13, 2007, from http://www.ericdigests.org/1999- 4/tourette.htm. http://www.ericdigests.org/1999- 4/tourette.htmhttp://www.ericdigests.org/1999- 4/tourette.htm Tourette Syndrome “PLUS” (2005). Tips on dealing with tics in the classroom. Retrieved September 13, 2007, from http://www.schoolbehavior.com/Files/tips_tourette.pdf. http://www.schoolbehavior.com/Files/tips_tourette.pdf

24. Prognosis Approximately 30% of people with Tourette’s will have a decrease in the frequency and/or severity of the tic. Approximately 30% of people with Tourette’s will have a decrease in the frequency and/or severity of the tic. Approximately 30 to 40% will completely lose all symptoms during late adolescence. Approximately 30 to 40% will completely lose all symptoms during late adolescence. Majority of those diagnosed with Tourette’s retain full time employment and pursue higher education Majority of those diagnosed with Tourette’s retain full time employment and pursue higher education Health A to Z (2006). Tourette syndrome. Retrieved September 13, 2007, from http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp. http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/At oz/ency/tourette_syndrome.jsp Wikipedia. Tourette syndrome. Retrieved October 31, 2007, from http://en.wikipedia.org/wiki/Tourette_syndrome. http://en.wikipedia.org/wiki/Tourette_syndrome

25. Info for parents REMEMBER: You are NOT alone! REMEMBER: You are NOT alone! Learn about Tourette’s and openly explain the diagnosis to others involved in the child’s life. Learn about Tourette’s and openly explain the diagnosis to others involved in the child’s life. Remember that the behaviors are not intentional – Punishing the behavior will not make the behavior go away! Remember that the behaviors are not intentional – Punishing the behavior will not make the behavior go away!

26. Where you can get more help http://www.mimh.nih.govhttp://www.mimh.nih.gov - tells you about federally funded research projects and findings on Tourette’s http://www.mimh.nih.gov http://www.tsa-usa.orghttp://www.tsa-usa.org – Tourette Syndrome Association, Inc. offers many resources (publications, videos, training sessions, etc. that are aimed at helping students, parents, families, and especially educators understand Tourette’s as well as tips to properly handle the symptoms – EXCELLENT resource http://www.tsa-usa.org http://www.tourettesyndrome.nethttp://www.tourettesyndrome.net – Tourette Syndrome “PLUS” http://www.tourettesyndrome.net

27. Additional Resources I Have Tourette’s, but Tourette’s Doesn’t Have Me I Have Tourette’s, but Tourette’s Doesn’t Have Me a documentary that appeared on HBO that focused on children with Tourette’s as they go about their daily lives a documentary that appeared on HBO that focused on children with Tourette’s as they go about their daily lives Gives a personal account of what their life is like Gives a personal account of what their life is like Video clip may be seen at http://www.tsa- usa.org/news/HBO_Release_apr06_update.htm - may also purchase entire DVD through this site Video clip may be seen at http://www.tsa- usa.org/news/HBO_Release_apr06_update.htm - may also purchase entire DVD through this sitehttp://www.tsa- usa.org/news/HBO_Release_apr06_update.htmhttp://www.tsa- usa.org/news/HBO_Release_apr06_update.htm EXCELLENT resource!!!! EXCELLENT resource!!!!

28. Scenario Imagine that you are in a room with 20-30 of your peers and you are all silently reading a passage that you are about to be quizzed on. All of a sudden, you begin to feel a slight tickle in your throat and you feel that you need to cough. A few seconds pass and it goes away and you are able to stay on task to finish the assigned reading. Before you know it, that tickle is back and even worse this time around. You NEED to cough, to let it out, in the worst way. Your body naturally and involuntarily responds to the tickle in your throat by coughing. “NO!” you tell yourself. You are supposed to be paying attention to the reading. Everyone else is going to be done and ready to move on and you will still be reading. Then everyone is going to tease you for being a slow reader. BUT YOU NEED TO COUGH!! The more you think about and tell yourself to pay attention and finish reading, the worse and more severe the tickle gets in the back of your throat. You begin to fidget in your seat and tap your pencil off of your desk. “Don’t do it, don’t cough,” you tell yourself. The more you tell yourself this the worse the tickle is getting. It is getting worse….and worse…and worse!! Imagine that you are in a room with 20-30 of your peers and you are all silently reading a passage that you are about to be quizzed on. All of a sudden, you begin to feel a slight tickle in your throat and you feel that you need to cough. A few seconds pass and it goes away and you are able to stay on task to finish the assigned reading. Before you know it, that tickle is back and even worse this time around. You NEED to cough, to let it out, in the worst way. Your body naturally and involuntarily responds to the tickle in your throat by coughing. “NO!” you tell yourself. You are supposed to be paying attention to the reading. Everyone else is going to be done and ready to move on and you will still be reading. Then everyone is going to tease you for being a slow reader. BUT YOU NEED TO COUGH!! The more you think about and tell yourself to pay attention and finish reading, the worse and more severe the tickle gets in the back of your throat. You begin to fidget in your seat and tap your pencil off of your desk. “Don’t do it, don’t cough,” you tell yourself. The more you tell yourself this the worse the tickle is getting. It is getting worse….and worse…and worse!!

29. Scenario Did you cough? Did you cough? Imagine that you did cough and everyone around you starts to laugh. The teacher sends you to the principal’s office for coughing in class AGAIN. Imagine that you did cough and everyone around you starts to laugh. The teacher sends you to the principal’s office for coughing in class AGAIN. How do you feel now? How do you feel now?

30. Case study ■ I want you to imagine that you are Samantha. How would you react/feel given this scenario? ■If you were the teacher, what could you have done differently? What could you do to change the vicious cycle of bullying? ■From what you know, was the school compliant with Section 504 regulations? If not, what should be done?

31. Contact information Dana Barvinchak Dana Barvinchak E-mail – dmb0901@gmail.com E-mail – dmb0901@gmail.comdmb0901@gmail.com Telephone – 412-480-4924 Telephone – 412-480-4924