Top 10 Things to Know Top 10 Things to Know about Tourette about Tourette Syndrome (TS)Syndrome (TS)

Tourette Syndrome is a neurological disorder Tourette Syndrome is a neurological disorder characterized by motor and vocal tics with an characterized by motor and vocal tics with an onset in childhood. TS is a spectrum disorder onset in childhood. TS is a spectrum disorder

with a wide variety of symptomswith a wide variety of symptoms

#1 No Two Cases of TS are Alike#1 No Two Cases of TS are Alike

Meeting one student with TS will not Meeting one student with TS will not prepare you for an encounter with other prepare you for an encounter with other students with TS—the range of symptoms students with TS—the range of symptoms is huge.is huge.

The media tends to focus on extremes, The media tends to focus on extremes, e.g. coprolalia (the impulse to curse and/or e.g. coprolalia (the impulse to curse and/or say exactly the word(s) that are most say exactly the word(s) that are most inappropriate at the moment; however, inappropriate at the moment; however, there are many more individuals with there are many more individuals with other tic symptomsother tic symptoms

Some tics are verbal and some are Some tics are verbal and some are physical, e.g. some students will sniff; clear physical, e.g. some students will sniff; clear their throats; nod their heads; tap their their throats; nod their heads; tap their shoes; punch the air, bark like dogs; make shoes; punch the air, bark like dogs; make silly faces; etc. There’s an unlimited silly faces; etc. There’s an unlimited variety of tics and they come and go in variety of tics and they come and go in unpredictable phases. Tics can be unpredictable phases. Tics can be “contagious” in that one person may “pick “contagious” in that one person may “pick up” a tic from another. Tics can be simple up” a tic from another. Tics can be simple or complex. By helping school personnel or complex. By helping school personnel accept that each situation is unique and accept that each situation is unique and changeable, prepares teachers to accept changeable, prepares teachers to accept the child with TS and allows them to the child with TS and allows them to welcome the child into their classroom welcome the child into their classroom and/or it may allow you to work with the and/or it may allow you to work with the school personnel to help educationally plan school personnel to help educationally plan for this studentfor this student

#2 Child with TS have Limited Control Over #2 Child with TS have Limited Control Over their Symptomstheir Symptoms

Controlling tics is difficult. It takes a great deal Controlling tics is difficult. It takes a great deal of both concentration and energy—energy that of both concentration and energy—energy that is siphoned from what the student needs to pay is siphoned from what the student needs to pay attention in class. It has been compared to the attention in class. It has been compared to the concentration involved in suppressing a sneeze concentration involved in suppressing a sneeze or cough while in the audience of a quiet play or or cough while in the audience of a quiet play or concert—which is something we can all relate concert—which is something we can all relate to.to.

Usually adults are better at controlling their tics Usually adults are better at controlling their tics than children. Adults report they can hold their than children. Adults report they can hold their tics in for hours at work releasing them in the tics in for hours at work releasing them in the privacy of privacy of their their office, car or a bathroom stalloffice, car or a bathroom stall. .

Children with TS may need to “let loose” on the Children with TS may need to “let loose” on the playground during recess or may need to run up playground during recess or may need to run up and down the hall during class hours to shake the and down the hall during class hours to shake the tension from their bodies. Sharing your tension from their bodies. Sharing your understanding of this will aid school personnel’s understanding of this will aid school personnel’s understanding and will make life easier for the understanding and will make life easier for the child.child.

TS is mysterious because it waxes and wanes—TS is mysterious because it waxes and wanes—e.g. when the student’s symptoms seem to e.g. when the student’s symptoms seem to disappear and reappear it is tempting to look for disappear and reappear it is tempting to look for understandable patterns; yet there may not be understandable patterns; yet there may not be any discernable pattern. A child may have any discernable pattern. A child may have “controllable” or negligible tics for long periods of “controllable” or negligible tics for long periods of time; however, this does not necessarily mean he time; however, this does not necessarily mean he or she is “over” [cured of] TS. or she is “over” [cured of] TS.

##3 OCD is a Huge Complicating Problem…3 OCD is a Huge Complicating Problem…and It’s Just the Beginningand It’s Just the Beginning

Most people with TS have co-morbid neurological Most people with TS have co-morbid neurological conditions, such as Attention Deficit Disorder conditions, such as Attention Deficit Disorder (ADD), obsessive compulsive disorder (OCD), (ADD), obsessive compulsive disorder (OCD), learning disabilities (LD), sensory integrations learning disabilities (LD), sensory integrations issues and clinical depression. Some folks are issues and clinical depression. Some folks are beset with an alphabet soup of symdromesbeset with an alphabet soup of symdromes

The obsessive thoughts and repetitive The obsessive thoughts and repetitive compulsions are very, very difficult to live with. compulsions are very, very difficult to live with. And while depictions in the media may make the And while depictions in the media may make the symptoms seem almost cuddly the reality is symptoms seem almost cuddly the reality is harsh. When given a hypothetical choice of what harsh. When given a hypothetical choice of what to alleviate TS or OCD—most folks would opt to to alleviate TS or OCD—most folks would opt to alleviate the OCD alleviate the OCD

Be aware that a child with OCD may feel a tremendous Be aware that a child with OCD may feel a tremendous need to touch objects in a ritual manner in a setting. need to touch objects in a ritual manner in a setting. They may need to repeat words, finish a train of thought They may need to repeat words, finish a train of thought before a conversation can continue, or arrange pencils in before a conversation can continue, or arrange pencils in a rigid configuration. There’s no way to predict what will a rigid configuration. There’s no way to predict what will stimulate these thoughts and/or behaviors. It is stimulate these thoughts and/or behaviors. It is important that adults demonstrate compassion as other important that adults demonstrate compassion as other students observe and comment that these behaviors are students observe and comment that these behaviors are peculiar and single out the student as “weird.”peculiar and single out the student as “weird.”

In addition to OCD, TS is often accompanied by other co-In addition to OCD, TS is often accompanied by other co-morbid conditions--Attention Deficit Disorder or morbid conditions--Attention Deficit Disorder or Attention Deficit Hyperactivity Disorder –making it Attention Deficit Hyperactivity Disorder –making it difficult for a child to focus on tasks at hand. Impulsivity difficult for a child to focus on tasks at hand. Impulsivity and inattentiveness are also behaviors associated with and inattentiveness are also behaviors associated with ADHD/ADD and create discipline issues for the child with ADHD/ADD and create discipline issues for the child with TS. The degree of impact of each of these co-morbid TS. The degree of impact of each of these co-morbid conditions will be unique to each child. conditions will be unique to each child.

Children with TS who have learning disabilities will also Children with TS who have learning disabilities will also have a wide variety of processing difficulties—visual, have a wide variety of processing difficulties—visual, auditory, visual motor, etc. The vast majority of children auditory, visual motor, etc. The vast majority of children with TS have very poor handwriting.with TS have very poor handwriting.

Children with TS will also have reading difficulties Children with TS will also have reading difficulties when their eyes fail to track across a page. Poor when their eyes fail to track across a page. Poor handwriting can be the result of coordination handwriting can be the result of coordination problems. Sensory integration issues can distract problems. Sensory integration issues can distract a student and educators must be aware of how all a student and educators must be aware of how all these conditions work together to increase the these conditions work together to increase the difficulties faced by these children in school.difficulties faced by these children in school.

#4 All Stressed Out#4 All Stressed Out

Although stress and anxiety have an impact on all of us, Although stress and anxiety have an impact on all of us, students with TS find that tic symptoms are increased students with TS find that tic symptoms are increased during times of stress and anxietyduring times of stress and anxiety

Things like test taking, choosing teams, school play Things like test taking, choosing teams, school play auditions, etc. produce stress in students with “normal” auditions, etc. produce stress in students with “normal” neurobiological status. Students with TS who are already neurobiological status. Students with TS who are already battling tics and compulsions find that stress is ratcheted battling tics and compulsions find that stress is ratcheted up many times the magnitude. Educators must be aware of up many times the magnitude. Educators must be aware of this and some accommodations may be needed such as this and some accommodations may be needed such as waiving time limits on test and/or testing in a separate, waiving time limits on test and/or testing in a separate, quiet locationquiet location

Even “good stress”—the excitement felt in anticipation of a Even “good stress”—the excitement felt in anticipation of a special occasion such as a field trip or a fun school special occasion such as a field trip or a fun school assembly can cause an increase in tic symptoms. Knowing assembly can cause an increase in tic symptoms. Knowing this is a possibility and planning for it may help students this is a possibility and planning for it may help students with TS enjoy the event without an increase in anxietywith TS enjoy the event without an increase in anxiety

#5 Everybody “Onboard”#5 Everybody “Onboard” It is critical to help all staff (teachers, cafeteria It is critical to help all staff (teachers, cafeteria

workers, bus drivers, substitutes, cross walk guards, workers, bus drivers, substitutes, cross walk guards, coaches, guidance counselors, or janitors) learn coaches, guidance counselors, or janitors) learn about TS— and what it means to the student in about TS— and what it means to the student in schoolschool

No matter how well intentioned – a hurtful comment No matter how well intentioned – a hurtful comment from a cafeteria worker or failure on the bus drivers from a cafeteria worker or failure on the bus drivers part to acknowledge the impact of TS can have a part to acknowledge the impact of TS can have a terrible effect on a child. Substitutes are especially terrible effect on a child. Substitutes are especially important since they assume the authority of the important since they assume the authority of the teacher related to discipline in the classroomteacher related to discipline in the classroom

It is important to seek reassignment for children with It is important to seek reassignment for children with TS when placed with teachers who lack flexibility to TS when placed with teachers who lack flexibility to adapt to the needs of a student with TSadapt to the needs of a student with TS

Training is certainly available and is critical for Training is certainly available and is critical for everyone in the school setting who comes in contact everyone in the school setting who comes in contact with a child with TSwith a child with TS

#6 Bad #6 Bad KidKid or Bad Symptom? or Bad Symptom?

Although there is a difference between willful Although there is a difference between willful disobedience and uncontrollable behavior, it is no easy disobedience and uncontrollable behavior, it is no easy task to tell them apart.task to tell them apart.

Classroom discipline becomes a complicated topic and Classroom discipline becomes a complicated topic and adding the wild card of behaviors that may be beyond the adding the wild card of behaviors that may be beyond the control of the student really complicates that task. control of the student really complicates that task. Children with TS and associated disorders respond best to Children with TS and associated disorders respond best to consistent discipline versus periodic punishment. consistent discipline versus periodic punishment.

To help distinguish when the student is genuinely unable To help distinguish when the student is genuinely unable to control his or her outbursts is to establish positive to control his or her outbursts is to establish positive communication from the start. An environment of trust communication from the start. An environment of trust will allow students to own up to their culpability. When will allow students to own up to their culpability. When they break the rules, they expect to be punished. they break the rules, they expect to be punished. Communications are key.Communications are key.

#7 Parents are Ready to Do Battle#7 Parents are Ready to Do Battle

Parents and/or professional advocates are ready to do battle Parents and/or professional advocates are ready to do battle at a moment’s notice. Unfortunately, many of the parents of at a moment’s notice. Unfortunately, many of the parents of children with TS have been through long, hard battle with children with TS have been through long, hard battle with schools and school divisions. It is important to set a schools and school divisions. It is important to set a professional and mutually respectful tone with these parents professional and mutually respectful tone with these parents from the start. from the start.

Many of these parents have become very knowledgeable Many of these parents have become very knowledgeable about TS out of necessity and want to address their children’s about TS out of necessity and want to address their children’s educational needs. They can have a wealth of information educational needs. They can have a wealth of information and workshops related to TS and can be used as a resource in and workshops related to TS and can be used as a resource in helping others understand this puzzling condition—TS. In helping others understand this puzzling condition—TS. In contrast, there are other parents who may deny their child’s contrast, there are other parents who may deny their child’s condition. They may be unwilling to discuss symptoms of the condition. They may be unwilling to discuss symptoms of the diagnosis with the school staff and may have unrealistic diagnosis with the school staff and may have unrealistic expectations about what the school can accomplish. You expectations about what the school can accomplish. You may have to work with these parents on behalf of the childmay have to work with these parents on behalf of the child

#8 IEP, 504, the IDEIA and All the Rest of the #8 IEP, 504, the IDEIA and All the Rest of the Numbers and Letters You’ll Need to KnowNumbers and Letters You’ll Need to Know

IDEIA guarantees that students with disabilities receive a IDEIA guarantees that students with disabilities receive a free and appropriate education and the accommodations free and appropriate education and the accommodations they need in order to receive it. Each time the law is they need in order to receive it. Each time the law is renewed, portions of it are re-evaluated. It is difficult for renewed, portions of it are re-evaluated. It is difficult for school administrators, teacher and parents to understand school administrators, teacher and parents to understand the nuances of these changes and the impact they have on the nuances of these changes and the impact they have on individual children. It is important that all involved parties individual children. It is important that all involved parties keep focused on the goal of finding the best way to educate keep focused on the goal of finding the best way to educate individual students.individual students.

The IEP (Individual Education Program) and 504 Plans are The IEP (Individual Education Program) and 504 Plans are tools for determining how best to educate these children. tools for determining how best to educate these children. Both plans are legal documents which when completed Both plans are legal documents which when completed must be adhered to in a non-discretionary way by the must be adhered to in a non-discretionary way by the school division. The IEP is more specific than the 504 and school division. The IEP is more specific than the 504 and provides students with appropriate modifications of the provides students with appropriate modifications of the curriculum. The 504 provides access to the curriculum curriculum. The 504 provides access to the curriculum

Of course the IEP is the standard for delivering special Of course the IEP is the standard for delivering special education services to students with disabilities, e.g. hearing or education services to students with disabilities, e.g. hearing or visual impairment, serious emotional disturbance, specific visual impairment, serious emotional disturbance, specific learning disability, autism, traumatic brain injury and other learning disability, autism, traumatic brain injury and other health impairments. Recently Tourette Syndrome was health impairments. Recently Tourette Syndrome was recognized as a disability category. In the past, numerous recognized as a disability category. In the past, numerous school divisions used the category of OHI when finding school divisions used the category of OHI when finding students with TS eligible for special education services due to students with TS eligible for special education services due to the neurobiological condition caused by a chemical imbalance the neurobiological condition caused by a chemical imbalance in the brain.in the brain.

By using an IEP, the curriculum may be modified through By using an IEP, the curriculum may be modified through changes in teaching strategies, the classroom/school changes in teaching strategies, the classroom/school environment, and the addition of related services and/or in environment, and the addition of related services and/or in other ways to match the student’s specific and individual other ways to match the student’s specific and individual needs.needs.

Section 504 criteria includes the presence of a disability that Section 504 criteria includes the presence of a disability that affects a major life activity which may include but is not affects a major life activity which may include but is not limited to seeing, hearing, speaking, walking, breathing, and limited to seeing, hearing, speaking, walking, breathing, and learning. Documentation of the impairment is needed so that learning. Documentation of the impairment is needed so that the school environment can be modified to allow the student the school environment can be modified to allow the student to have appropriate access to the curriculumto have appropriate access to the curriculum

For example, a student with significant tics may be For example, a student with significant tics may be allowed to leave the class to go to the nurse’s allowed to leave the class to go to the nurse’s office or another safe environment to “release” office or another safe environment to “release” tics. He or she may need a reduced homework tics. He or she may need a reduced homework load, class notes, or a laptop computer for school load, class notes, or a laptop computer for school and homework. These accommodations address and homework. These accommodations address specific difficulties in eye-tracking, handwriting, specific difficulties in eye-tracking, handwriting, reading impairments, etc. While the curriculum is reading impairments, etc. While the curriculum is not actually changed, the student’s access to it is not actually changed, the student’s access to it is different when compared to an average student. different when compared to an average student. Appropriate accommodations are important in Appropriate accommodations are important in enabling a student with TS to be successful in enabling a student with TS to be successful in school.school.

#9 Making Accommodations May be #9 Making Accommodations May be NecessaryNecessary

Just as each child with TS exhibits very different symptoms—Just as each child with TS exhibits very different symptoms—and copes with them with varied abilities—accommodations and copes with them with varied abilities—accommodations may be needed.may be needed.

The specific nature of the accommodations will come out in The specific nature of the accommodations will come out in the IEP or 504 Plan, but it is important to understand the the IEP or 504 Plan, but it is important to understand the scope of accommodations in advance. While a student with TS scope of accommodations in advance. While a student with TS may be able to take a test in the classroom with others, if tics may be able to take a test in the classroom with others, if tics are manifested, they may disturb the others in the class. Or are manifested, they may disturb the others in the class. Or other students may not be able to take a test in a room with other students may not be able to take a test in a room with too much stimulation, i.e. other students scratching pencils on too much stimulation, i.e. other students scratching pencils on paper. Accommodations must be determined on a case-by paper. Accommodations must be determined on a case-by case basis.case basis.

Some of the very things a teacher may do to excite learning Some of the very things a teacher may do to excite learning may actually backfire on children with TS, i.e. rows of brightly may actually backfire on children with TS, i.e. rows of brightly colored decorations, intriguing toys and other distractions colored decorations, intriguing toys and other distractions may simply be too stimulating for a student with TS and may simply be too stimulating for a student with TS and ADHD ADHD

Children with TS and ADHD need to give their energy to Children with TS and ADHD need to give their energy to focusing on one thing at a time. The child with TS may need focusing on one thing at a time. The child with TS may need a neat, quiet workspace in order to study at home and a neat a neat, quiet workspace in order to study at home and a neat and quiet workspace to participate in schooland quiet workspace to participate in school

It is not uncommon for children with TS to report that the It is not uncommon for children with TS to report that the hum of florescent lights, the whistle of air conditioners, glare hum of florescent lights, the whistle of air conditioners, glare and other external annoyances that most of us can ignore, and other external annoyances that most of us can ignore, become huge obstacles to concentration. So become huge obstacles to concentration. So accommodations may need to be made so that the student accommodations may need to be made so that the student with TS can be included in all school activities and their with TS can be included in all school activities and their experiences are organized so that they can participate on experiences are organized so that they can participate on their own terms. Designing appropriate accommodations can their own terms. Designing appropriate accommodations can be challenging at times, but the task can be accomplished be challenging at times, but the task can be accomplished through cooperation and understandingthrough cooperation and understanding

#10 Life is Not Fair#10 Life is Not Fair

Another challenge educators face is holding the child with Another challenge educators face is holding the child with TS to a different standard of classroom behavior. A child TS to a different standard of classroom behavior. A child mimicking the tics of a classmate is being disruptive, while mimicking the tics of a classmate is being disruptive, while the child with tics can’t be held responsible for the noise in the child with tics can’t be held responsible for the noise in the same way. the same way.

Teachers must understand this and communicate the Teachers must understand this and communicate the variable rules to all the students in the classroom. A variable rules to all the students in the classroom. A favorite phrase of teachers familiar with TS is –favorite phrase of teachers familiar with TS is –FAIR does FAIR does not equal EQUAL. not equal EQUAL. The subtle lesson that other students in The subtle lesson that other students in the class may not realize for many years is that learning the class may not realize for many years is that learning compassion for people who are different– will help them compassion for people who are different– will help them later in life. later in life.

Unfairness is another area related to coping skills. Some Unfairness is another area related to coping skills. Some children with mild symptoms have a great deal of difficulty children with mild symptoms have a great deal of difficulty coping with the impact of their symptoms in social situation, coping with the impact of their symptoms in social situation, while others with severe cases blithely go through life as if while others with severe cases blithely go through life as if their symptoms were a complete non-issue. The capacity to their symptoms were a complete non-issue. The capacity to cope appears to have little or nothing to do with the actual cope appears to have little or nothing to do with the actual symptoms and much more to do with the individual symptoms and much more to do with the individual personality, family and the nurturing—or lack of a nurturing—personality, family and the nurturing—or lack of a nurturing—environment in which the child grows up. Schools can provide environment in which the child grows up. Schools can provide safe places for children with TS to develop the coping skills safe places for children with TS to develop the coping skills that they will need as adults.that they will need as adults.

Life isn’t fair and it’s a hard truth for children with TS. Life isn’t fair and it’s a hard truth for children with TS. Educators with the necessary background can create an Educators with the necessary background can create an environment in which all students learn compassion and environment in which all students learn compassion and acceptance of differencesacceptance of differences

This presentation was adapted from TSA Medical Publication: This presentation was adapted from TSA Medical Publication: The School Administrator: Ten Things to Know about Tourette The School Administrator: Ten Things to Know about Tourette SyndromeSyndrome by Candida B. Korman by Candida B. Korman