Tourette Tourette SyndromeSyndrome

An Overview of Tourette Syndrome for An Overview of Tourette Syndrome for TeachersTeachers

Learner ObjectivesLearner Objectives

Participants who complete this seminar will Participants who complete this seminar will be able to:be able to:

Define symptoms and characteristics of Define symptoms and characteristics of Tourette’sTourette’s

List positive ways to address behaviors List positive ways to address behaviors related to Tourette Syndrome in the related to Tourette Syndrome in the classroomclassroom

List necessary supports that a student List necessary supports that a student with Tourette’s may need in the classroomwith Tourette’s may need in the classroom

GlossaryGlossary ““Tic”Tic” –– involuntaryinvoluntary body movements and/or body movements and/or

vocalizationsvocalizations

CoproialiaCoproialia – use of obscene words or phrases – use of obscene words or phrases

CopropraxiaCopropraxia – use of unacceptable gestures – use of unacceptable gestures

HistoryHistory Gilles de la Tourette was a French neurologist .Gilles de la Tourette was a French neurologist .

Provided the first formal description of Provided the first formal description of Tourette’s Syndrome in 1885Tourette’s Syndrome in 1885

Defined it as an inherited neurological Defined it as an inherited neurological disorder characterized by the presence of disorder characterized by the presence of vocal and motor ticsvocal and motor tics

Prior to this, people with tics were believed to Prior to this, people with tics were believed to have been possessed by the devil.have been possessed by the devil.

DefinitionDefinition

Diagnostic criteria includes:Diagnostic criteria includes: presence of multiple motor AND one or more presence of multiple motor AND one or more

vocal ticsvocal tics symptoms occur nearly every day or symptoms occur nearly every day or

intermittently for a period of one yearintermittently for a period of one year impairs functioningimpairs functioning childhood onsetchildhood onset symptoms not related to medications or another symptoms not related to medications or another

medical conditionmedical condition

Examples of ticsExamples of tics

Simple TicsSimple Tics

VocalVocal-Throat clearing-Throat clearing

-Sniffing-Sniffing

-Barking-Barking

-Coughing-Coughing

-Yelling-Yelling

-Hiccupping-Hiccupping

-Belching-Belching

-Animal sounds-Animal sounds

MotorMotor-Eye blinking-Eye blinking

-Sticking tongue out-Sticking tongue out

-Head turning-Head turning

-Muscle tensing-Muscle tensing

-Flexing fingers-Flexing fingers

-Kicking-Kicking

Complex TicsComplex Tics

Vocal Vocal -Repeating parts of -Repeating parts of words or phraseswords or phrases

-Talking to self-Talking to self

-Different intonations-Different intonations

-Obscene word usage-Obscene word usage

Motor Motor -Flapping arms-Flapping arms

-Facial grimacing-Facial grimacing

-Adjusting or picking -Adjusting or picking at clothingat clothing

-Jumping-Jumping

-Shaking feet-Shaking feet

-Pinching-Pinching

-Poking-Poking

-Kissing-Kissing

-Spitting-Spitting

PrevalencePrevalence

Occurs 3 to 4 more times in boys Occurs 3 to 4 more times in boys than girls than girls

Affects 1 in 1,000 or .10% of the Affects 1 in 1,000 or .10% of the population of the United Statespopulation of the United States

Symptoms first noticed in childhoodSymptoms first noticed in childhood Occurs in all populations and all Occurs in all populations and all

ethnic groupsethnic groups

How is Tourette’s diagnosed?How is Tourette’s diagnosed?

Diagnosis is made through observations Diagnosis is made through observations and interviews with the patient and and interviews with the patient and caregiver(s), examination of family caregiver(s), examination of family history, and ruling out other secondary history, and ruling out other secondary causes of tics.causes of tics.

Factors Complicating Factors Complicating DiagnosisDiagnosis People with Tourette’s often present with an People with Tourette’s often present with an

extreme range of symptoms – often misdiagnosed extreme range of symptoms – often misdiagnosed or under-diagnosedor under-diagnosed

People with Tourette’s may also be diagnosed People with Tourette’s may also be diagnosed with or have symptoms of :with or have symptoms of :

ADD/ADHD (approx. 50%)ADD/ADHD (approx. 50%) AnxietyAnxiety DepressionDepression Learning Disabilities (approx. 25-30%)Learning Disabilities (approx. 25-30%) OCD (approx. 25-40%)OCD (approx. 25-40%)

Biological factorsBiological factors

Inherited neurological disorderInherited neurological disorder Not everyone that inherits the genetic vulnerability will Not everyone that inherits the genetic vulnerability will

show symptomsshow symptoms

Neurotransmitter, dopamine, found in Neurotransmitter, dopamine, found in excessexcess

Family factorsFamily factors

Parenting style will impact the Parenting style will impact the frequency in which the tic occurs.frequency in which the tic occurs.

Family support tremendously Family support tremendously important!important!

Families must also be their child’s Families must also be their child’s advocate.advocate.

School factorsSchool factors

Are there school factors that may Are there school factors that may cause the tic to intensify?cause the tic to intensify?

YES!YES!Anxiety, Stress, and FatigueAnxiety, Stress, and Fatigue

School FactorsSchool Factors

How should a teacher properly How should a teacher properly discipline the behavior?discipline the behavior?

DON’T DO IT!DON’T DO IT!Disciplining the behavior is Disciplining the behavior is NOT going to reduce the NOT going to reduce the frequency of the tic!frequency of the tic!

School FactorsSchool Factors

Teasing and bullying occur…tic Teasing and bullying occur…tic behavior increases…teasing and behavior increases…teasing and bullying increases – Vicious cycle!bullying increases – Vicious cycle!

BREAK THE CYCLE!BREAK THE CYCLE!

How the problem affects How the problem affects school lifeschool life

Depends on the specific child and his/her Depends on the specific child and his/her specific strengths and weaknessesspecific strengths and weaknesses

Most children with Tourette’s will need some Most children with Tourette’s will need some type of academic accommodation or type of academic accommodation or necessary support.necessary support.

Accommodation for visual-motor integration Accommodation for visual-motor integration problemsproblems– Assign a buddy as a “note taker” or – Assign a buddy as a “note taker” or “homework partner,” allow extra time for test taking, “homework partner,” allow extra time for test taking, allow use of a calculator for rote calculations, etc.allow use of a calculator for rote calculations, etc.

Accommodation for language problemsAccommodation for language problems – provide – provide visual input as well as auditory whenever possible, visual input as well as auditory whenever possible, repeat directions and then have student repeat them repeat directions and then have student repeat them again, when reading give the child a card with a cut out again, when reading give the child a card with a cut out “window” so that they are only viewing one word at a “window” so that they are only viewing one word at a time, etc.time, etc.

How the problem affects How the problem affects school lifeschool life

Accommodation for attention problemsAccommodation for attention problems – seat the child in front of the teacher, seat – seat the child in front of the teacher, seat the child away from windows and doors, the child away from windows and doors, short assignments with frequent checks, short assignments with frequent checks, etc.etc.

Additional Additional AccommodationAccommodation

Students with more severe tic Students with more severe tic behaviors may need further behaviors may need further support through the use of an support through the use of an Individualized Education Plan.Individualized Education Plan.

What YOU can do to What YOU can do to helphelp

Remember: People with Tourette’s Remember: People with Tourette’s are not all alike!are not all alike!

Learn more about how Learn more about how Tourette’s impacts your Tourette’s impacts your student.student.

Talk to the student’s family about positive Talk to the student’s family about positive ways to handle school stress and what works ways to handle school stress and what works for the particular student.for the particular student.

What YOU can do to helpWhat YOU can do to help TOLERANCE!TOLERANCE! Ignore the ticsIgnore the tics Allow the student to have a permanent pass to Allow the student to have a permanent pass to

leave the classroom as needed so that he/she leave the classroom as needed so that he/she may “get the tics out” if/when they become may “get the tics out” if/when they become too overwhelmingtoo overwhelming

Provide a private place where the student can Provide a private place where the student can go to relax and/or release ticsgo to relax and/or release tics

Allow things to be completed through a Allow things to be completed through a different medium ---presentations that are different medium ---presentations that are videotaped at home if oral recitation is videotaped at home if oral recitation is problematic for the studentproblematic for the student

What YOU can do to helpWhat YOU can do to help

Provide the student with extra time on certain Provide the student with extra time on certain activities and/or the option to take a test in a activities and/or the option to take a test in a different locationdifferent location

Provide a peer education program (with Provide a peer education program (with permission from student and family) to reduce permission from student and family) to reduce any bullying of teasing. If this continues, any bullying of teasing. If this continues, provide additional adult supervision during provide additional adult supervision during the less structured times of the daythe less structured times of the day

Alternatives/reasonable accommodationsAlternatives/reasonable accommodations MODEL ACCEPTANCEMODEL ACCEPTANCE

What to avoidWhat to avoid Losing your patienceLosing your patience

Punishing the child for his/her ticPunishing the child for his/her ticPunishment will not make the tic Punishment will not make the tic go away. You are ultimately go away. You are ultimately punishing the child for punishing the child for something that he/she cannot something that he/she cannot control.control.

PrognosisPrognosis Approximately 30% of people with Approximately 30% of people with

Tourette’s will have a decrease in the Tourette’s will have a decrease in the frequency and/or severity of the tic.frequency and/or severity of the tic.

Approximately 30 to 40% will completely Approximately 30 to 40% will completely lose all symptoms during late lose all symptoms during late adolescence.adolescence.

Majority of those diagnosed with Majority of those diagnosed with Tourette’s retain full time employment Tourette’s retain full time employment and pursue higher educationand pursue higher education

Where you can get Where you can get more helpmore helphttp://tourette.ca is the only national voluntary non-profit is the only national voluntary non-profit

organization in Canada assisting individuals affected by Tourette organization in Canada assisting individuals affected by Tourette Syndrome (TS) and its associated disorders.Syndrome (TS) and its associated disorders.

http://www.mimh.nih.gov - tells you about (US) federally funded http://www.mimh.nih.gov - tells you about (US) federally funded research projects and findings on Tourette’sresearch projects and findings on Tourette’s

http://www.tsa-usa.org – Tourette Syndrome Association, Inc. offers – Tourette Syndrome Association, Inc. offers many resources (publications, videos, training sessions, etc. that are many resources (publications, videos, training sessions, etc. that are aimed at helping students, parents, families, and especially aimed at helping students, parents, families, and especially educators understand Tourette’s as well as tips to properly handle educators understand Tourette’s as well as tips to properly handle the symptoms – EXCELLENT resourcethe symptoms – EXCELLENT resource

http://www.tourettesyndrome.net – Tourette Syndrome “PLUS” – Tourette Syndrome “PLUS”

Additional ResourcesAdditional Resources

I Have Tourette’s, but Tourette’s Doesn’t I Have Tourette’s, but Tourette’s Doesn’t Have MeHave Me a documentary that appeared on HBO that a documentary that appeared on HBO that

focused on children with Tourette’s as they go focused on children with Tourette’s as they go about their daily livesabout their daily lives

Gives a personal account of what their life is likeGives a personal account of what their life is like Video clip may be seen at 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- may also purchase entire DVD through this site EXCELLENT resource!!!!EXCELLENT resource!!!!

ScenarioScenario Imagine that you are in a room with 20-30 of your peers and 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 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 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 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 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 the assigned reading. Before you know it, that tickle is back and even worse this time around. You NEED to cough, to let it and even worse this time around. You NEED to cough, to let it out, in the worst way. Your body naturally and involuntarily out, in the worst way. Your body naturally and involuntarily responds to the tickle in your throat by coughing. “NO!” you responds to the tickle in your throat by coughing. “NO!” you tell yourself. You are supposed to be paying attention to the tell yourself. You are supposed to be paying attention to the reading. Everyone else is going to be done and ready to move reading. Everyone else is going to be done and ready to move on and you will still be reading. Then everyone is going to on and you will still be reading. Then everyone is going to tease you for being a slow reader. BUT YOU NEED TO tease you for being a slow reader. BUT YOU NEED TO COUGH!! The more you think about and tell yourself to pay COUGH!! The more you think about and tell yourself to pay attention and finish reading, the worse and more severe the attention and finish reading, the worse and more severe the tickle gets in the back of your throat. You begin to fidget in 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, 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 don’t cough,” you tell yourself. The more you tell yourself this the worse the tickle is getting. It is getting worse….and the worse the tickle is getting. It is getting worse….and worse…and worse!!worse…and worse!!

ScenarioScenario

Did you cough?Did you cough? Imagine that you did cough and Imagine that you did cough and

everyone around you starts to laugh. everyone around you starts to laugh. The teacher sends you to the The teacher sends you to the principal’s office for coughing in principal’s office for coughing in class AGAIN.class AGAIN.

How do you feel now?How do you feel now?

Case studyCase study■ ■ I want you to imagine that you are Samantha. I want you to imagine that you are Samantha. How would you react/feel given this scenario?How would you react/feel given this scenario?

■■If you were the teacher, what could you have done If you were the teacher, what could you have done differently? What could you do to change the differently? What could you do to change the vicious cycle of bullying?vicious cycle of bullying?

■■From what you know, was the school compliant From what you know, was the school compliant with Section 504 regulations? If not, what should with Section 504 regulations? If not, what should be done?be done?

Contact informationContact information

Dana BarvinchakDana Barvinchak E-mail – E-mail – dmb0901@gmail.com Telephone – 412-480-4924Telephone – 412-480-4924