1. January 25, 2011 Dennis Cullen PaTTAN
Special Education Paraprofessional Training Series Supporting Students Who Have Tourette’s Syndrome
January 25, 2011
Dennis Cullen
PaTTAN
This is a 2 hour training session. Its purpose is to focus the participants’ attention on what Tourette’s Syndrome is and strategies for working with students in the classroom who have TS.

2. PaTTAN’s Mission
The mission of the Pennsylvania Training and Technical Assistance Network (PaTTAN) is to support the efforts and initiatives of the Bureau of Special Education, and to build the capacity of local educational agencies to serve students who receive special education services.

3. PDE’s Commitment to Least Restrictive Environment (LRE)
Our goal for each child is to ensure Individualized Education Program (IEP) teams begin with the general education setting with the use of Supplementary Aids and Services before considering a more restrictive environment.

4. Local Policy
Your local school district, IU, preschool or employing agency’s policies regarding paraprofessional job descriptions, duties, and responsibilities provide the final word!
This slide refers participants to their local district policies for the final word on paraprofessional duties and responsibilities since there is a wide variance among districts across the Commonwealth. 4

5. Learner Outcomes Participants will
Develop an understanding of Tourette’s Syndrome
Identify symptoms and difficulties associated with Tourette’s Syndrome
Discuss specific ways to respond to students with Tourette’s Syndrome
The learner outcomes are listed here.
Please note that throughout the notes pages, and sometimes on the slides, Tourette’s Syndrome will be called TS, a much shorter version of its name and acceptable in its own right. Alert the participants and people to whom you are speaking, that it is a shortened version of the full name of the syndrome.

6. Agenda Introduction What is Tourette’s Syndrome?
Tic Disorders and Their Impact
MotorTics
Vocal Tics
Associated Symptoms/ Strategies for:
Attention-Deficit Hyperactivity
Obsessive Compulsive Disorder
Learning Disabilities
Recommendations for paraprofessionals
Let’s take a look at the scope of our presentation.
On the slide you will see the first part of our agenda.
As specified in the learner outcomes, we will develop an understanding of this syndrome including why you may see it called by many names. We will also look briefly at the causes of Tourette’s.
Tics and tic disorders are a large part of TS and we will spend a significant amount of time discussing the impact of tics on people with Tourette’s and strategies to deal with them in the classroom.
A tic is a voluntary or involuntary movement or vocalization.

7. Introduction Identified by Gilles de la Tourette in 1885
First reports of a successful drug treatment for TS in the early 1960s
Current estimates – some 200,000 in the U.S. have the most severe form of TS.
As many as 1 in 100 exhibit milder symptoms
This is a quick overview of the history of the syndrome. The syndrome was named in 1885 for Gilles (geel) de la Tourette who published the first account of patients having this disorder.
Despite a small flurry of interest in the late nineteenth century, the disorder remained obscure and poorly understood for the next half century. In the 1960s it was discovered that Haloperidol, a neuroleptic (a drug that reduces nerve activity and produces a tranquilizing effect) drug with sedative effects, reduced tics. This was the first medicinal intervention tried with success.
It is important to point out that we are really talking about medications for this syndrome only within the last sixty years.
Mild cases may be more common with the incidence of mild cases being 1 in 100.
As with much of the information listed in this presentation which are from the Tourette’s Association and the APA website, TS affects every racial and ethnic group and boys are 3-4 times as likely to get the disorder than girls.
TS can be an chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.

8. What is Tourette’s Syndrome?

9. What is Tourette’s Syndrome (TS)
Tourette’s Syndrome is a neurological disorder characterized by repetitive, stereotyped, involuntary movements, and vocalizations called tics.
According to the Diagnostic and Statistical Manual of Mental Disorders, fourth edition, Text Revision, or DSM-IV TR, Tourette’s Syndrome is a neuropsychiatric (having to do with the study of the structure and function of the nervous system as it applies to the psychiatric aspects of disease) disorder that’s characterized by tics.

10. What is Tourette’s Syndrome (TS)?
DSM-IV-TR
Motor and vocal tics need to be present, not necessarily at the same time
Tics occur nearly daily throughout one year, no more than a 3 month tic-free period
Tics cause distress or significant impairment in important areas of functioning
Onset before age 18
Tics cannot be due to effects of a substance or general medical condition
These are the clinical manifestations of the syndrome that must be in place in order for the child to receive a diagnosis of Tourette’s under the DSM-IV-TR. This is the manual for diagnosing clinical mental health disorders. DSM-IV-TR stands for the Diagnostic and Statistical Manual of Mental Disorders, it is the fourth edition and the TR stands for “Text Revision”. In this text revision version none of the diagnostic codes have been changed, but the text has been edited. This is the manual that is used by all mental health professionals to diagnosis mental health disorder.
Tourette’s is really the most severe of the tic disorders. People with the full syndrome of TS have both motor and vocal tics.
Many children and adults may develop tics for a variety of reasons. These tics may be transient. That is, they go away over time, but a person cannot have a diagnosis of TS without all of these factors being in place. Tic disorders, on their own, are much more common than Tourette’s Disorder itself.

11. What is Tourette’s Syndrome (TS)
Precise cause of Tourette’s unknown
Current research points to abnormalities in certain brain regions including:
Basal ganglia
Frontal lobes
Cortex
The exact cause of Tourette’s is unknown. Current research indicates that the cause may be related to abnormalities in certain regions of the brain including the basal ganglia, the frontal lobes, and the brain cortex. Specifically, TS may be related to the circuits that interconnect these regions and the neurotransmitters (dopamine, serotonin, and norepinephrine) responsible for communication among nerve cells. Given the complex presentation of TS, the cause of the disorder is likely to be equally complex.
There are no blood or laboratory tests needed for diagnosis, but neuro-imaging studies such as magnetic resonance imaging (MRI), computerized tomography (CT), and electroencephalogram (EEG) scans, or certain blood tests may be used to rule out other conditions that might be confused with TS.
Evidence from twin and family studies suggests that TS is an inherited disorder and more recent studies suggest that the pattern of inheritance is quite complex.
Some of the children in the HBO documentary, “I Have Tourette’s But Tourette’s Doesn’t Have Me” talked about how they need to let their peers no that TS is NOT contagious.

12. Check for Understanding
Tourette’s Syndrome is characterized by ___.
repetitive, stereotyped movements
repetitive, stereotyped vocalizations
Both a & b
None of the above
Correct answer : c. Both a & b

13. Click on the “For Young People” Tab.
Click on address in the upper left over “Research & Medicine” Show the website and click on the tab, “education”
Click on the “For Young People” Tab.
Click on link to see Current and Previous issues of “That Darn Tic”
Read Kaleb and Joey from fall Point out that those paraprofessionals working with older students might want to look at some of the others. They are rather long to read aloud here.

14. Tic Disorders and Their Impact

15. Tic Disorders and Their Impact
What is a tic?
Sudden, rapid, recurrent, involuntary or semi-voluntary movement (motor tic) or vocalization (vocal tic)
This is the definition of a tic from a clinical perspective.
Notice that, like many other conditions, tics can be aggravated by stress and anxiety. Depending on where the child has more stress, such as home or school, would be where the child manifests more tics. Sometimes the very act of trying to suppress the tic causes the person with the disorder to tic even more.
There are two major types of tics – motor or movement tics and vocal tics. Not all individuals with TS demonstrate both types of tics concurrently, but they may. As was stated before in order to have a diagnosis of Tourette’s Syndrome the person must have both kinds of tics.
Tics may occur in up to 20% of the population of school children. TS, wherein tics are chronic, may occur in about 1% of the population.

16. Motor Tics
Simple tics are fast, purposeless movements such as eye-blinking, neck-jerking, shoulder-shrugging, or facial grimacing
Complex tics may be slower or consist of stereotyped movements, may appear to have purpose, and at some point may be characterized as a “compulsion”
Echopraxia – involuntary copying of other’s words or behaviors
Simple motor tics are movements or sounds that occur “off and on” in no unpredictable order. They have the appearance of “normal behaviors gone wrong”. Although eye blinking is one of the most common simple motor tics, throat clearing may also present as the first tic noticeable to other people around the person who has Tourette’s. Any muscle group may be involved as part of Tourette’s but upper body tics tend to be more common and noticeable. Often the first tic noticeable is near the eyes or mouth of the person. Other examples of simple tics are: jaw thrusting, wrist snapping, limb jerking, and abdominal tensing.
Complex motor tics involve more muscle groups and include hand gestures, jumping, touching, twirling when walking, deep knee bends, retracing steps and unusual posturing (such as holding your neck in a particular pose for several seconds).

17. Vocal Tics
Simple vocal tics are characterized as meaningless sounds and noises such as sniffing, throat clearing, snorting, clicking, screeching and barking
Complex vocal tics are linguistically meaningful utterances such as words or phrases
palilalia - repeating one’s own sounds or words
echolalia –repeating what someone else has said
coprolalia - obscene, inappropriate & aggressive words and statements; it is not very common, occurring in less than 5% of TS patients
Vocal tics are sounds, words or utterances made by the vocal cords. Some simple vocal tics may just seem like annoying behaviors that the child is doing to “bother” others around them. It is often hard to tell a tic from just a habit that is set and hasn’t been changed. One needs to know you have a habit, good or bad, in order to change or get rid of it. Sometimes people just don’t realize that the “habit” they think the child has is really a tic that the child has no control over. Many parents report being upset over their “disciplining” their child for what they thought was an annoying habit that is not voluntary but rather was really the beginning of a tic. Simple vocal tics also include blowing, coughing, chirping, sucking and screaming sounds.
Keep in mind that who the child is, IS NOT what they say or do. These are involuntary actions on their part.
We will quickly review the complex vocal tics.
When people think of Tourette’s they often think of vocal tics. Not everyone who has vocal tics have these complex vocal tics. Palilalia is the repeating of one’s own words. Echolalia is repeating the last several words of the person to whom the person with TS is speaking. This is an often misunderstood tic in that teachers or parents sometimes think that students are mocking them when it is just the manifestation of their tic disorder.

18. Impact of Tics
Tend to “wax and wane” in response to environmental factors
May change in frequency, type, and location over time
Environmental factors may have an influence on the expression of tics. We will see a few of these in some of the upcoming slides.
In addition, tics may change in frequency or topography (what it looks like) over time.

19. Impact of Tics May worsen with: May worsen during puberty Stress
Anxiety
Excitement
Fatigue
Illness
May worsen during puberty
The symptoms of TS may worsen during puberty and may improve after the adolescent years. TS is chronic, lifelong disorder that is probably caused by abnormal metabloism of at least one brain chemical causing varying symptoms in different family members.
(Tim Howard – Goalie with England’s Manchester United – had Tourette’s Syndrome)

20. Impact of Tics Controlling Tics
Some can suppress, camouflage, or manage tics
May result in substantial buildup in tension
Some individuals with TS may work very hard to control their tics in public settings, such as school. This may result in a build up of tension and the need for relief in a safe environment. This may have significant impact for families. That is, when children come home from school, they may demonstrate many of the tics that were suppressed or managed throughout the day.

21. Check for Understanding
Motor and vocal tics can be categorized as ___.
grand and petit
hard and soft
mild, moderate, and severe
simple and complex
Correct Answer: d. simple and complex

22. Check for Understanding
All of the following are true about tics EXCEPT that____.
they are influenced by environmental factors
they tend to remain the same throughout a person’s lifetime
they may worsen during puberty
they may increase with stress, anxiety, fatigue, and illness.
Correct Answer: b. they tend to remain the same throughout a person’s lifetime

23. Associated Disorders Tourette’s Syndrome Obsessive-Compulsive Disorder
Learning Disabilities
Attention Deficit Hyperactivity Disorder
Next we’re going to take a look at some of the associated disorders that individuals with TS might have. Please note that not every individual with TS will have all or any of these associated disorders. In addition, there are some other disorders that may occur with TS in some individuals.

24. Associated Disorders Obsessive-Compulsive Disorder (OCD)
Attention Deficit Hyperactivity Disorder (ADHD)
Learning Disability (LD)
TS is a neurobiological spectrum disorder and, therefore, is most often accompanied by other neurological conditions. The most common associated genetic neurological disorders are Obsessive-Compulsive Disorder, Attention Deficit Hyperactivity Disorder and Learning Disabilities
In addition students may exhibit other neurobiological symptoms including executive dysfunction, depression, anxiety disorders, fine motor difficulties, aggressive and/or explosive behavior, and sensory defensiveness. These associated characteristics often create the greatest challenge, not only to the student, but to the classroom environment.
The tics may not be the most disruptive problem in a classroom setting. Understanding the associated disorder is crucial to understanding TS.

25. Obsessive-Compulsive Disorder (OCD)
Often described as “tics of the mind”
Children rarely discuss for fear of being thought of as “crazy”
Obsessions are thoughts, images, or impulses that are very unpleasant and on which your mind gets stuck.
Compulsions are behaviors that are used to reduce the anxiety accompanying the obsessions

26. Common Obsessions and Compulsions
Need for symmetry and perfectionism
Neatness
Counting
Checking things repeatedly
Constant doubt
Germ obsessions
Ritualistic behaviors
Need for things to be even
These are some Common obsessions and compulsions that a person with OCD might have. Please note that this is by no means an exhaustive list.

27. Obsessive Compulsive Disorder
Activity
Write the Pledge of Allegiance
Each time you hear me say “NOW”
Stop writing
Tap your little finger of the hand with which you are writing at the top of the page
Erase and rewrite every 3rd word.
During Webinar, Trainer will make a noise or say “Now”. Trainer will make the noise or say “Now” on a variable interval schedule. (5 – 15 seconds).
AFTER ABOUT 2 MINUTES STOP.
This activity is to simulate what a person with TS and/or OCD might experience in an attempt to complete a task. As you probably experienced, it was difficult to complete the task. It may have been frustrating as well. You may have lost your place and had to start over or go back a bit to see where you were. This is similar to what a person with TS and/or OCD might go through.

28. Attention Deficit/Hyperactivity Disorder
May be the most problematic aspect of TS
Characterized by
Disorganization
Disruptiveness
Impulsivity
A conservative estimate is that 50% of students with TS also have ADHD. They generally have impulse control problems, are distractible, have short-term memory difficulties, are socially immature, and have problems with executive functions.
ADHD may be the most problematic aspect of TS because it is often interpreted exclusively as a behavior problem
Students with ADHD often demand a great deal of extra time from the adults with whom they are working. These students may lose their homework, come to class without a pencil, bring the wrong materials, blurt out answers without being called upon, and pay little attention to the adults with whom they are working.

29. Attention Deficit/Hyperactivity Disorder
Likely to have difficulty with the following:
Starting a task
Sequencing information
Organizing materials
Regulating the intensity of their emotional responses to situations
Some of these fall under the category of executive functioning. Executive functioning refers to the ability to form goals, plan appropriately, and to perform effectively. This can be compared to an orchestra whose conductor suddenly falls asleep. The musicians are left to play on their own without any guidance for tempo, beat, or audio level.

30. Attention Deficit/Hyperactivity Disorder
Dysregulated arousal system
“Storms” – uncontrollable rages for what appear to be absolutely no reason
Children with TS and ADHD often go into uncontrollable rages called “storms” for what appear to be absolutely no reason. The extreme reaction that an average person would have to a car accident or a death in the family, a child with TS and ADHD could have over a minor disturbance such as dropping an ice cream cone or losing a book or toy. If you can recall ever having a car accident, you may go into a shock-like state and do things that you might not do under normal circumstances. Children with TS and ADHD go unpredictably in and out of this shock-like state all day long. They do and say things that they may not even remember doing or saying.

31. Learning Disabilities
May affect all the basic skills
Reading
Writing
Spelling
Math
The vast majority of student with TS and ADHD have handwriting problems which are often caused by a visual-motor integration problem. Students with this difficulty write slowly and laboriously, often developing cramps in their hands and fingers. In addition, they produce a finished copy that is sloppy, unevenly spaced, and has irregular margins, and inconsistent lettering. Even experienced educators will likely interpret this type of writing as indicative of careless student, or even worse, one with a negative attitude. This not necessarily the case. For many students, this difficulty can be bypassed by using assistive technology.

32. Check for Understanding
Tourette’s Syndrome is linked to higher rates of all of the following EXCEPT:
Psychosis
Attention-deficit/Hyperactivity Disorder
Obsessive Compulsive Disorder
Learning Disabilities
Correct Answer: a. Psychosis

33. Working with Students with Tic Disorders

34. Working with Students with Tic Disorder
Draw no attention to the tic
Allow child to leave the classroom to let out the tics
Explain to substitutes what might happen in the classroom
Adjust academic and behavioral expectations as necessary
Ignoring the tics may be easier for you than for the students. Education, in the form of awareness, for other classmates about what TS is and that it has nothing to do with who the student really is as a person is critical to even attempt to end any bullying or teasing.
Allowing the child to have a private place to tic, or to leave the classroom so the student can tic without disrupting anyone else in the class, is a great strategy if at all possible. Check with your partner teacher to see what is allowable and possible for the student with TS.
It is very important to explain to substitutes, honoring as much confidentiality as possible, what might happen in the classroom and that it is not the student’s fault.
Embarrassing or punishing the child for the tic tends to aggravate the incidence of tics and make them much worse. Make sure that substitutes are prepared for what might happen in the classroom and list the strategies being used to help the student with a tic disorder. paraprofessionals can help substitutes understand what may happen and share the strategies in use for the welfare of the students and the comfort of the class. This information should be shared in a very confidential and preventive way. Don’t wait for the substitute to hear or see the behavior that they might misunderstand. Share the strategies and help them know what is in place to help the student/s involved.
After you have reviewed the possible strategies in the above slide guide the group through the following short activity.
Consider that tics may become worse at the end of the day as the student tires – may need to adjust work, schedule, etc

35. Working with Students with Tic Disorders
The student must know that you are “On his side and not on his back.”
Provide appropriate support
Is the “Safety Net”
Educational success often is dependent on the student experiencing school as a safe environment in which to take risks. Therefore, a paraprofessional who can provide positive supports will assist the student inbeing successful, providing a sense of safety that encourages risk taking by that student.
The paraprofessional should not be seen as someone there to punish or correct. If the student thinks that the purpose of the paraprofessional is to “keep him in line”, the result will most likely be increased stress. Increasing stress will increase symptoms, while decreasing stress typically helps to reduce symptoms. Reduced symptoms will, in most cases, help to reduce any behavioral difficulties that may interfere with the educational process.

36. Working with Students with Tic Disorders
Consider the tics as “symptoms of the disability”
Inappropriate comments may be a combination of three common symptoms:
Social skills deficits
Difficulty inhibiting mental responses
Vocal tics
It is difficult to separate the tics and the behaviors associated with TS and associated disorders. It is important that the child with TS must be helped to take responsibility for his/her behavior but NOT be punished for it. The child is not responsible for his/her medical disorder, but he or she IS responsible for its impact on other people.

37. Working with Students with Tic Disorders
Don’t take behaviors personally
Recognize the student’s strengths and talents
Behavior modification techniques & negative consequences are not usually effective
Don’t take behaviors personally. This should reduce anger and frustrations which can result in a strained relationship.
Recognize the student’s strengths and talents. These can be a great topic for conversation, can assist in developing a positive relationship, and can help build the student’s self-worth. They can also be a calming strategy or a distraction
Behavior modification techniques & negative consequences typically are not effective. Because the symptoms of TS appear to be within the conrol of th child, it is easy to believe that a punishing consequence will be an incentive for him or her to change the behavior. However, punishment generally does not work. The student’s difficult behaviors are due to a chemical imbalance in the brain and, as such, are not purposeful misbehaving (even though they may appear that way). Instead, strategies or new skill must be taught while providing positive and proactive support to reinforce the new strategies and skills. The paraprofessional is often the best person to observe whether specific strategies are successful or not.

38. Working with Students with Tic Disorders
Know when to step back
Remember the role of the paraprofessional is to provide educational assistance
Debriefing sessions at the end of the day
Know when to step back. It is important for students to have typical interactions with peers. Paraprofessionals must know when to hang back and when to step in to discourage teasing and/or bullying.
Role of paraprofessional is to provide educational assistance. Avoid taking on the role of the “counselor” or “therapist.” Well-intended remarks can sometimes affect the student in an unanticipated manner. For example, a paraprofessional was repeatedly telling a young boy with TS that if he continued to say “bad things” that he would never have any friends. The paraprofessional attempted to provide the student with an incentive to change his behavior, but in reality she was adding stress and a sense of hopelessness for the student who had uncontrollable vocalizations.
Debriefing sessions the last 5 to 10 minutes of the school day may be useful in assisting with school/home transitions. Some students work hard to “keep it together” during the school day. It may be helpful to privately ask the student what was one thing that was stressful today and one thing that was successful. This can allow some students to validate their difficulties as well as accomplishments for the day.

39. Working with Students with Tic Disorders
Symptoms and difficulties vary dramatically from student to student
Never generalize one student’s difficulties, symptoms, or successful strategies
The only thing consistent about TS is the inconsistencies.
Symptoms, difficulties, and successful strategies for one student are not representative of all students with TS.

40. Check for Understanding
When working with a student with a tic disorder the paraprofessional should ____.
make the student apologize for inappropriate vocal tics
remember and use the strategies that work for all students with tic disorders
ignore the tics
provide counseling and advice on controlling the tics
Correct Answer: c. ignore the tics

41. Learner Outcomes Participants will
Develop an understanding of Tourette’s Syndrome
Identify symptoms and difficulties associated with Tourette’s Syndrome
Discuss specific ways to respond to students with Tourette’s Syndrome
Let’s review the Learner Outcomes. By now you should:
Have developed an understanding of TS
Be able to identify symptoms and difficulties associated with TS
Be able to discuss specific ways to respond to students with TS.

42. Tourette Syndrome Association, Inc.
Resources
Tourette Syndrome Association, Inc.
42-40 Bell Blvd.
Bayside, New York 11361
Information from the National Institute of Neurological Disorders and Strokes (NINDS)
The sites above, with all their resources, are the most important resources that were used to put this presentation together.
I would encourage you to look at these sites for the most recent updates and for further information.

43. Commonwealth of Pennsylvania Pennsylvania Department of Education
Contact Information
Dennis Cullen
Phone # ext. 7232
Commonwealth of Pennsylvania
Thomas W, Corbett, Governor
Pennsylvania Department of Education
Amy C. Morton, Acting Secretary
John J. Tommasini, Director
Bureau of Special Education
Patricia Hozella, Assistant Director