IT’S NOT JUST THE TICS:

BEHAVIORAL AND LEARNING ISSUES WITH TOURETTE

SYNDROME AT HOME AND IN THE CLASSROOM

By Linda R. Abbott, RN, MSN,  Barbara Baron, PhD,  Louise Kiessling, MD, FAAP

Department of Pediatrics, Memorial Hospital of Rhode Island, Pawtucket, Rhode Island  

This brochure is written to help parents and teachers better understand the child with Tourette Syndrome (TS).  The more you know about TS, the more effective you can be in working with children with this neurological disorder.  Most people are aware that TS involves tics (motor and vocal) but far less information has been readily available to parents and teachers regarding the potential behavioral aspects of this disorder. In our experience, the self-control difficulties sometimes associated with TS can be more problematic than the tics themselves.  As three professionals who work with children with TS, we hope to share our understanding of this disorder with parents and educators so that improved collaboration and teamwork can occur to support the child with TS in the classroom. Since children have multiple teachers during their education, parents should plan an opportunity to educate teachers before each school year.  Some parents have found it helpful to use this brochure by highlighting those aspects of this pamphlet that apply to their child so the busy teacher can focus on the most relevant material.  Forming a collaborative relationship between parent, child, teacher and clinician provides the support needed by the child with TS.  First we will look at the disorder and then offer suggestions for management of behavioral issues both at home and at school.

TOURETTE SYNDROME

For a diagnosis of TS, one must have had both motor and phonic tics that have persisted for more than one year (although there can be some tic free intervals).  One does not need to have uncontrolled swearing (copralalia) as a vocal tic for a diagnosis of TS.  In fact, only a very small percentage of people with TS have coprolalia.  Tic spectrum disorders, (which includes TS), is a broader term that includes disorders that involve motor and/or phonic tics and the co-morbidities, usually obsessive compulsive behavior, which may not fit the full definition of TS.  Not all people with tics develop TS.  The information in this brochure can still apply to children with tic spectrum disorders who fail to meet the diagnostic criteria for TS.

TS is a disorder of faulty brakes.  By that, we mean that it is a neurobiologically based disorder of inhibitory control.  In other words, children with TS struggle with obtaining and maintaining control over motor movements as well as their repetitive thoughts, actions and their behaviors.  For some children, tics may be the only part of the syndrome that must be dealt with, or there may be many other symptoms or co-morbidities that the child must face.  To further complicate this picture, symptoms may come and go or wax and wane, so that what you face this month may be gone the next, of may be replaced with something new a few months later!  It is important to learn about the co-morbidities so that you accurately evaluate what you are seeing.  Accurate reporting can be vital for symptom management both medically and with designing interventions.

Co-morbidities are problems that may commonly develop along with tics.  Not all children with tics have these symptoms, but these symptoms are frequently seen in children with tics.  (Each one will be discussed in more detail later.)

• OCD/OCB (obsessive compulsive disorder/obsessive compulsive behavior)

• Anxiety disorders (generalized anxiety, separation anxiety, school avoidance or school phobia, other phobias, panic symptoms, worries, fears)

• Behavior disorders (difficulty controlling impulses and regulating emotions)

• ADHD (Attention Deficit Hyperactivity Disorder, previously called ADD)

• Learning disabilities (Children, particularly those with ADHD, may struggle to learn)

      Associated Difficulty:

• Sleep disorders in about half of patients with TS including difficulty initiating sleep, night terrors, sleep walking or bed wetting

• Depression and discouragement from frequent criticism and not feeling in control

• Emotional ups and downs

• Great variability in performance

• Low frustration tolerance, short fuse, easy anger, and flash point temper

• Graphomotor problems, “sloppy” penmanship

TICS

Tics are defined as a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement, sound or vocalization.

• Tics are described as an internal pressure that is relieved when the action is performed.  They are described as an irresistible urge like an itch that must be scratched.

• Tics increase and decrease over time.

• Tics change over time.  New ones may appear as old ones disappear.  Some tics can become more elaborate and complex.  Often there are periods with no tics at all.  Even when tics have gone, other aspects of the tic spectrum disorders can still be present.

• Tics increase in response to stress and decrease in response to distraction or during periods of concentration (such as being engrossed or constructively engaged in an activity).

• Tics can increase in frequency and intensity if attention is drawn to them (suggestibility).  This can be particularly frustrating, as a request to stop an action may actually be followed by and increase in that very behavior.  It is important to realize that this increased urge to perform the very act being discussed is not willful defiance but is inherent in the disorder itself.  The request (“Don’t do _____!), simply elicits the behavior involuntarily.

• Tics can often be suppressed temporarily.  However, suppression creates a feeling of “pressure” that builds until one must let go or give in to the urge.  Expressing the tic brings temporary relief of anxiety and pressure.  In some ways it is like having to sneeze of like having hiccups.  There is typically an increase in intensity or frequency or “explosion” of tics after a period of suppression.  Parents typically witness this “explosion” in the afternoon, as the child has attempted to maintain control and to suppress tics all day in school.  In addition, a loss of behavioral control of labile emotions are not uncommon after school ( which can make homework difficult).

• Tics are not caused by “being nervous”.  They have biological roots.

 Complex Tics, Impulsively Driven Behavior, or Compulsive Urges

• This behavior is more meaningful, organized and purposeful in appearance. In some cases, it may even be appropriate to the situation.  In fact, the context may actually elicit the complex tic.  These acts are often described in terms used for deliberate action. However there is an impulsive, driven, burst-like quality to them that conveys the underlying quality of disinhibition and diminished impulse control.  The behavior has a quality of being “carried away” in the moment or of getting “swept up” by the situation, as if somehow the context has “suggested” of “triggered” the response.  There is often a component of heightened suggestibility or mimicry to the act. The child does not intend to do it until somehow the impulse is elicited or suggested by the context. Examples of this would be: A student who screams when entering a large open space (such as a cafeteria or auditorium at school). The screaming is not a repetitive habit per se, however, the wide open space elicited or “pulled” for the behavior. Another example: A student while walking down the aisle in the classroom taps the head of each student as he passes. This student does not repetitively touch heads, however, the alignment of the desks suggested the activity which he expressed as an impulsive/compulsive urge.

Obsessive Compulsive Disorder (OCD) and Behavior (OCB)

Obsessions are repetitive intrusive thoughts or ideas and are like tics of the mind. Compulsions are repetitive actions that in some way are tied to an obsession or idea. As with motor tics, the repetitive thoughts, mental rituals and intrusive images may be perceived by the thinker as silly or excessive. The are, nevertheless, involuntary and cannot be ignored or suppressed without considerable effort. Typically they are quite difficult to intrude upon or interrupt. As with complex motor tics, mental rituals and repetitive habits (compulsions) are accompanied by considerable internal discomfort, tension, pressure, or anxiety. Typically relief is achieved as the mental rituals and repetitive habits are performed to the point at which it feels “just so”, “perfect”, “just right”, “balanced” or “complete”. Also, like complex motor tics, these rituals and habits are easily triggered in an involuntary manner beyond the child’s control. Individuals with OCD/OCB are quite suggestible and tend to pick up symptoms from innocuous life experiences. An example would be of a child who saw an alien abduction movie and then was plagued by repetitive, intrusive thoughts of aliens abducting him that went well out control.

Excessive rumination, deliberation, and a tendency to get sidetracked by extraneous thoughts and details can make it impossible to keep pace with the flow of ideas during class or to comprehend while reading. Excessive rumination, indecision and self-doubt, as well as a tendency to have trouble noticing the forest for the trees, can make note-taking during lectures an overwhelming task. “I get so caught up in the details, that I can’t figure out what he’s getting at.” “I can’t decide what is important, so I can’t write down anything. It’s all or nothing with me. Either I write down everything he says or I can’t write down anything.”

We will refer to OCD and OCB as OCB since both are included with the term OCB.

  Obsessive-like behavior may include:

• Getting “stuck’ and ‘hooked” on an idea or thought; not being able to move on in one’s thinking

• Having a one track mind

• Difficulty disengaging, staying “at it and at it” (called perseverating), making the issue bigger than it is

• Difficulty with transitions (moving from one activity to the next)

• Due to difficulty disengaging or stopping

• If the transition offends a sense of order due to rigidity of thinking

• Getting an idea (like “I can’t do this”) and being fully convinced that one is right even with evidence to the contrary

• Not being able to yield a point or give in because one can’t get “unhooked” from an idea. Being sure the sky is blue when everyone else says it is gray.

• Rigidity, inflexibility, excessive stubbornness; having to be “the boss” with peers

• Needing things “just so”

• Perfectionistic tendencies: rewriting, erasing, not being able to risk “failure”

• Rigidity with regards to schedules

• Rigidity with regards to the environment (chairs “just so,” window open “just so,” etc.)

Obsessions:  “Classic” obsessions or repetitive, recurrent thoughts may include:

• Thoughts that repeat themselves for no good reason to the point of becoming bothersome and intrusive

• Excessive concern with dirt, germs, illnesses, chemicals, or contaminants

• Aggressive obsessions: thoughts of harm, violence or frightening images

• Worry about doing something harmful or bad toward self or toward others: having great fear that harm will come to self: excessive fear about harm coming (such as preoccupation about the weather)

• Sexual obsessions ( go well beyond age appropriate thoughts about sex)

• Magical colors, words or numbers that go beyond most children’s developmentally appropriate use of such things

• Excessive worry about body parts or appearance

• Excessive concern about religion or doing the right thing that even the religion believes is excessive

• Need to know or remember

• Intrusive sounds, words, music or numbers

• Intrusive visual images. (This can be mistaken for a formal thought disorder or hallucinations.)

• Fear of saying certain things or of not saying just the right thing

• Pathological doubting (“Did I really do ______?”)

• Excessive indecisiveness

• Pathological responsibility “Is it my fault?”

Compulsions:  (The doing or action part, not just an idea in the head.  The compulsion attempts to deal with the obsession)

• Ritualized hand washing, bathing, grooming routines or cleaning of objects

• Checking: of locks, toys, schoolbooks, desks, items

• Checking associated with daily routines, or that no one is harmed, or that no mistake was made

• Repeating rituals: rereading, erasing and rewriting

• Repeating of a motor act (going in and out of a door way, pacing in a set way, flipping a light switch, etc)

• Ordering and arranging; need for symmetry and lining items up in a certain way

• Hoarding and saving to excess which exceeds developmentally appropriate levels

• Magical games and routines developed to prevent something bad from happening (usually harm coming to loved ones)

• Rituals involving another person (usually a parent, sometimes a teacher) where the other person has to respond in a preset way

• Need to tell, ask or confess

• Excessive list making

• Need to touch, tap or rub

• Hair pulling (called trichotillomania): pulling out own eyebrows, eye lashes or hair

• Excessive reassurance seeking (“Did I get that right?” “There’s no gym today, right?”)

• There are others!

Anxiety Disorders

     With tic spectrum disorders it is not uncommon to experience symptoms of anxiety.

• Anxiety is experienced with the overall worsening of other symptoms, which in turn may increase worries about becoming overwhelmed by situational  demands or of losing control. This creates a vicious cycle. (The child realizes that he or she may lose control and tries to avoid the situation.)  

• In children, anxiety may not resemble fretting or hand wringing which is more typical in adults. Anxiety can be expressed by refusals, avoidance, attempts to negotiate terms of involvement, non-compliant or oppositional behavior, and even defiance of authority. “Controlling” and non-compliant behavior may be a frantic attempt by the child to manage externally imposed demands at a time when he or she is feeling internally agitated, anxious, and out of control. Oppositional behavior can be a reflection of the child’s ability to operate only within a very narrow range or zone of comfort and control. We know of one child who adamantly refused to go on a class trip to a fair. No one could understand his obstinate stance until he explained that the trip would just be too exciting and he knew he would lose control and embarrass himself. In this case the child’s oppositionality was an attempt to avoid a situation where a loss of control was likely to occur.  

• When rituals or habits are interrupted or when a child tries to suppress symptoms, there can be considerable anxiety and felt distress or pressure associated with attempting to remain quiet or sit still.  

• Certain medications can increase an internal sense of agitation and anxiety.  

• Obsessions and compulsions can be anxiety provoking in themselves. Children struggle with issues of embarrassment, worries about losing control or of “going crazy”. In addition, frightening obsessional content (violent, sexual, aggressive) can be quite distressing to the child. One nine-year-old girl was plagued by recurrent thoughts about wanting to have sex with her father. She felt guilty and shameful. Her guilt caused her as much stress as the actual obsession.  

• In periods of heightened emotional arousal or stress, many children with TS tend to “borrow” the emotional tone and outlook of those around them. They become the emotional barometers of their family or classroom setting. Children with TS are far more likely to become anxious and overwhelmed in large, excitatory environments or during periods of emotional tension or stress.

Behavioral Disturbances

Since TS is a disorder of inhibitory control or of “faulty brakes”, children with TS are more susceptible to losing control, both emotionally and behaviorally.  There is often a weak barrier between impulses and actions, which can often result in over-reactivity and hypersensitivity. The child can have difficulty ignoring environmental distractions and is susceptible to stimuli overload. Coping and self-control can become quickly overwhelmed by moment-to-moment shifts in mood, attitude, and outlook. In general these children are very reactive to both internal and external events. Everything can get under their skin and into their thinking.

• Irritability, low frustration tolerance, low tolerance for provocation, egocentricity (thinking the world revolves around them) and over-reactivity can lead to temper outbursts and loss of control episodes.

• Self-control issues are more evident in less structured, unpredictable, boring, boisterous, excitatory, and anxiety-provoking situations.  At school, this can include the lunchroom, recess, physical education or a classroom with acting-out students. At home, if play or the environment gets too chaotic or out of control they will be easily over stimulated.

• There is an intensity, or “overdrive” quality, to the behavior

• It’s not a question of reason or knowledge (“He should know better.” or “She knows the rules.”). Instead, good judgment, intentions or knowledge of “the rules” are over-ridden by impulses and emotions. It is not unusual then that following an emotional outburst a child may not be able to re-count events accurately. This should not be mistaken for attempts to avoid responsibility.

• Sometimes children with TS are so impulsive that they simply fail to consider consequences of their actions prior to acting. As a result they can be totally at a loss to explain why they acted as they did. Because they literally gave their action no thought, they may often not even be sure they did it. It just happened too quickly, impulsively and without any reflection.

• Behavior management issues often arise both at home and school, including

• Poor anger management and over-reactivity to adult correction           

• Difficulty going with the flow of life of the family or in the classroom

• On-going classroom disruptions characterized by near constant talking, on-going verbal blurting out comments and critiques (such as “You’re fat.”  “Yea, right.” “That’s dumb.”), butting in, or inability to stay out of the affairs of others.

• Oppositionality – often the request to stop an activity (“Don’t touch that!”) can be followed by an increase in that very act (an irresistible urge to grab at materials), as if the impulse had been inserted into the mind by the mere mention of it. Often this is a compulsive urge to act out the last thing heard rather than willful defiance.

Attention Deficit Hyperactivity Disorder

ADHD, Inattentive Type, Impulsive-Hyperactive Type, or Comorbid Type, (previously referred to as ADD or Attention Deficit Disorder), is frequently part of the tic spectrum disorder. The terminology has changed recently. Educating yourself about ADHD is very important. There is a great deal of educational material available about ADHD at your local library or bookstore, so we will not discuss it in great detail here. Also, ask your child’s clinician about local community resources for ADHD.

·         ADHD is not simply a behavior management problem but is a life-long chronic disability that impacts on information processing and work productivity.

·         ADHD symptoms contribute to a learning style that can result in learning difficulty and underachievement. This learning style is characterized by:  

o        Difficulty overcoming distractions (internal and external)

o        Fast or superficial processing of task demands

o        An impulsive/reckless response style

o        Fast or slap-dash approaches to work and problem solving

o        Difficulty employing deliberate problem-solving strategies

o        Poor application of effort

o        Difficulty tolerating the struggle to mastery during initial stages of learning

o        Difficulty maintaining sustained concentration that is necessary to process information in depth

o        Difficulty applying skills in new contexts or in complex ways, leading to superficial and/or concrete understanding in spite of good intellectual potential 

• A lack of independence and continued reliance upon adult support and external structure is often the direct result of faulty attentional processes. The frustration for teachers and parents can be the awareness that while the child has the intelligence to easily accomplish whatever he or she sets the mind to, he/she rarely seems to do so. It is precisely this struggle “to set the mind to the task” that characterizes ADHD, as the child with ADHD cannot easily focus attention, sustain concentration or work in goal-directed, deliberate ways.  It is usually not a question of caring more or tying harder. Due to the difficulty coping with distraction and controlling impulsive urges, the child with ADHD must actually work harder and apply more effort in order to accomplish daily tasks. Unfortunately, however, the student’s difficulty with the self-regulation of attention, activity and emotions is erroneously interpreted as a personality flaw such as laziness, malingering, lack of motivation, and poor achievement striving.

Learning Issues

     Learning differences associated with TS are:

• Pervasive organizational weakness which affects knowing what homework one has and bringing home the appropriate materials, carefully completing written work, and managing assignments.

• Pervasive attentional weakness (being unable to regulate the focus of attention, being distractible or unable to sustain focus. See the section on ADHD.)

• Global Comprehension weakness

-         Reading comprehension delays in spit of adequate decoding and language skills.

-         Auditory comprehension delays in spite of adequate language skills

-         Comprehension weaknesses may be related to a poor narrative sense or difficulty synthesizing information or knowledge base into meaningful concepts. There may be difficulty appreciating the “big picture”, extracting the main idea, or constructing meaning while information processing.

• Quantitative reasoning (number sense), visual spatial reasoning (spatial sense), and math weakness

• Global written output delays ranging from sloppy, labored writing to difficulty getting thoughts organized on paper

• Social learning disabilities - A tendency to “miss the point” can negatively impact the ability to interpret and respond to social cues. It may be hard for some children to “read between the lines” and appreciate non-verbal or unstated forms of communication such as gesture and facial expressing. Egocentricity and single mindedness can make it difficult to go with the conversational flow or to flexibly manage the give and take of social exchanges.

INTERVENTIONS AT HOME AND SCHOOL

Tics and Self Control Problems

• Recognize that children don’t have much control of tics. Control only lasts for so long (time varies with each child). Don’t scold or correct for tics. Provide embarrassment free opportunity for release of tics. Children will often be able to tell you what would be helpful (like taking a “note” to the principal’s office, being able to go to the bathroom or get a drink; anything that will allow a few moments of privacy). Some children may need a plan for the use of a private place where they can discretely go when tics are unusually intense (such as the nurse’s office, resource room or psychologist’s office).

• Create and sustain a positive, accepting attitude in the classroom. A teacher’s reactions to a child provide a model for behavior that other students will adopt. Address fluctuations in behavior, emotional self-control and work productivity without anger or annoyance. Children can be very sensitive to social embarrassment. Create a class milieu of mutual respect, tolerance, acceptance, responsibility and caretaking.

• Educate other children in the classroom about tics, obsessive compulsive symptoms and/or ADHD. Include faculty, monitors, and even the school bus driver in educational programs. It is essential, however, to let the child be a guide as to what would be helpful. Some children don’t want attention drawn to them; others appreciate the help. Resources include videos and literature from the Tourette Syndrome Association (TSA). (See http://tsa.mgh.harvard.edu/ ) The videos are quite inexpensive and can be used repeatedly to orient staff each year.

• Inform parents if there has been a dramatic increase in tics or deterioration in behavior. Frame the discussion in a supportive, “thought you’d like to know” way.

• Inform parents if there is an outbreak of strep throat within the classroom. For some children with TS, tics and OCB are made worse by streptococcal infections. More information about this is available from the TSA.

• If tics are socially inappropriate (such as spitting, swearing, touching other people in inappropriate places), it may be necessary to brainstorm with the child to generate acceptable strategies. Ideas might include carrying a tissue to spit into, or substituting a similar move like combing back the hair with the fingers for ‘giving the finger’, or asking permission first to touch a shoulder instead of touching a breast. Children can tell you what is a tic and what isn’t. If confused about what is truly a tic, consult with the child’s parent and/or clinician.

• Try not to get hung up on the issue of whether or not the child can control his or her tics, since the ability to control tics varies from day to day, minute to minute. What looks intentional may be or may not be. Children with tics may have general self-control problems.

• Not surprisingly, children who tic tend to be the butt of jokes and as a result have very poor self-esteem. Plan success into the child’s day and be public about it. If the child can do something well, create a chance for them to show it off. Foster a sense of competence and accomplishment. Cultivate talents and abilities. Remember symptoms can abate when a child is engrossed or constructively engaged in challenging activities.

• Preferential seating for a child with tics may mean a position that, while not ‘front and center’, still allows close teacher attention.

• If testing aggravates tics, test in a separate location. Stress can aggravate TS symptoms and taking tests is usually stressful.

• Children with tic disorders often are excessively restless. They may need to be permitted to move and take frequent breaks. Provide them with a quiet ‘office’ area to go to when classroom activities become too stimulating. Importantly, this quiet space should not be used as a punishment or time out space. Rather it is a ‘time off’ space that a student can retreat to in order to regain control, to work without distraction or without distracting class.

• Reduce stress and distractions. The class needs to be structured, quiet, orderly, with predictable routines. Provide preparation for upcoming transitions and changes in schedule. Careful attention must be paid to class size and composition. Not surprisingly, maintaining self-control is more difficult in a large boisterous, class with other acting-out students.

• Encourage self-control by giving the child permission to initiate his or her own exit from stressful, overwhelming, or excitatory situations. Reward the child for doing it independently rather than having to be told to do so.

• Be mindful of factors that can contribute to fluctuations in symptom expression, intensity and frequency. These include fatigue, sleeplessness, medications, medication changes, irritability, agitation, and schedule disruptions. Remember one event can color an entire day.

• Allow the child to control those aspects of the day (both at home and at school) that he or she can reasonably be expected to take charge of. Teachers often feel that they can’t negotiate with students; however, joint-planning conferences throughout the day in which the student helps to set priorities and work schedules can reduce control struggles. Similar planning of the day can take place at home.

• Remember to respect limitations. Allow for good and bad days as well as moment to moment fluctuations in attention, self-control, agitation and work productivity. Make adjustments without lowering expectations.

• Model a positive, collaborative problem-solving, solution-seeking approach to issues as they arise. Within this context, children come to understand that fair does not always mean equal.

Graphomotor Problems Associated with Movement Disorders

• The same neurological problems that cause tics or ADHD can cause difficulty with penmanship. Tics are part of a movement disorder. There is less control of one’s hand movements, in addition to more extraneous movements. There is also less ability to sustain attention throughout the entire assignment. For children with movement problems (often the very fidgety child), expecting good penmanship is not unlike asking a blind child to try harder to see. It’s very difficult, if not impossible. Note that the ability to write legibly ‘waxes and wanes’ just like tics. Sustaining consistently good penmanship is very difficult.

• Minimize copy work. This includes copying information from the board, problems from a text, or rewriting. Because copying is a difficult motor task, multiple mistakes will likely be made. Use dittos or ask another child to make a carbon copy ‘for the teacher’ when assignments are to be copied off the board. Children who are slow writers can’t get the information down quickly enough when it is dictated and still have it readable and accurate. Select a ‘study buddy’ for the child who makes sure that homework assignments are copied correctly.

• Introduce the child to word processing on a computer. Facilitate the learning of the keyboard. Nothing will help the child with a movement disorder’s ability to be successful at writing more than computer use. This will allow the child to edit and rework without having to recopy. Plus, you’ll be able to read it and the child can take pride in the finished product!

• Provide structured response formats such as fill in the blank, matching, true-false, underlining or circling answers. These structured formats reduce the demand for writing as well as for the independent organization and formulation of materials.

• Create alternate ways for students to demonstrate mastery of content material such as building models, giving a talk, creating a play, or dictating into a tape recorder. For some children with OCB who need to check and recheck written work or count the letters in every written word, such formats will provide the opportunity for the child to accomplish the real task of learning the material.

• Keep work sheet and work spaces organized and uncluttered. Assignments may need to be kept short. Dividing work sheets into brief segments with frequent check-in by the teacher will be more effective than giving multiple examples or work sheets at one time. Dividing work period into brief, manageable sections with structured breaks is preferable to ‘marathon’ work sessions.

• Be ready to change response formats. Be flexible. For example, if a student can’t stop erasing answers and this causes the child to rip the page, you may want to ask to have answers written on the black board, or dictate his/her answers to a ‘buddy’ who writes them on the paper, or switch to another activity all together.

• It can be helpful to modify work schedules in order to accommodate fluctuations in a child’s attention. Using weekly work packets and variable time frames will prevent the student from being unduly penalized during those periods of time during the day or week when he or she is not able to be optimally productive. By using a weekly calendar, work that could not be accomplished at a designated time can be completed during more productive work periods later in the week.

• The following are suggestions by Susan Conners, M.Ed. (an educator who has TS):

• Occupational Therapy

• Note taker or the use of a tape recorder

• Reports and test administered or delivered orally

• Verify all homework assignments copied from the blackboard or from teacher’s oral instructions

• Standardized test answers written in test booklet and recopied later onto answer paper by a teacher aide or assign numbers to an array of correct responses so the child only needs to write the number

• Waive time limits on tests (PL-94-142 entitles them to it) including SATs and national standardized tests.

• Do not penalize the student for poor handwriting; grade on effort

• Do not penalize for spelling errors; encourage the use of spell check on a word processor

• Provide graph paper to help line up math problems

ADHD in the Classroom and for School Work at Home

• Provide a quiet place for work. Consider allowing the student, at appropriate times, to wear a headset with instrumental music to block out distractions.

• Break down assignments. Avoid giving more than one task at a time. Try folding the paper in half and have the student go to the teacher when half is done and then take a break before continuing. When assigning large projects, set up a calendar with the student (keeping parents informed) so those daily deadlines are maintained. Part 1 can be due in two days rather than the entire project due in three weeks.

• Establish a quiet, private hand gesture or signal that becomes a reminder to refocus during listening periods. Provide on-going feedback when a student becomes sidetracked or loses focus. Feedback should be given in a manner that encourages self-monitoring of attention. Feedback should be provided in a matter of fact manner, without exasperation or entreaties to ‘pay attention’.

• Use a daily assignment sheet to be filled out by the student, signed by the teachers and verified by the parents each evening. The teacher’s signature ensures that the assignment was recorded correctly by the student.

• Allow the student who is distracted by activity after class dismissal to leave class several minutes early to pack the school bag with appropriate materials. Arrange for someone to check to make sure necessary supplies are packed.

• Color code texts, notebooks and folders. For example the blue science book goes with a blue notebook and blue folder. Start the year out with imposed organization for all students. Your ADHD students and most others will really benefit.

• Have an extra set of books at home if possible so no one gets upset when the correct books aren’t at home when needed.

• Keep an extra supply of pencils, papers, etc. in a desk drawer rather than penalizing the disorganized student for being unprepared.

• Give clear, simple directions. Give one or two steps at a time. Have the student repeat directions back to you. During classroom discussions it is helpful to provide brief periodic summaries of information to enable her to re-establish the topic at hand as well as to acquaint her with factual information that she may have missed when she became side tracked.

• Preferential seating near the teacher, ideally to the side and away from distractions, would be helpful. (This needs to be balanced with a child’s needs to be placed in an area where tics are less distracting to classmates.) Physical proximity to an adult often reduces anxiety and agitation. In addition, preferential seating would facilitate the teacher’s ability to provide frequent re-direction, refocusing of the child’s attention. A gentle hand on the shoulder can greatly assist relaxing and maintaining attentional focus

• Due to attentional and obsessional issues, a child may need direct assistance in ’getting started’. Because of a tendency to get easily ‘stuck’ or sidetracked, it is essential to provide direct encouragement and assistance in order to initiate and sustain task involvement.

• Activities should be brief and varied. Independent work periods should be interspersed with group participation activities.

• Alternating more passive activities (such as listening) with more active tasks (such as hands-on, collaborative projects) should be helpful in sustaining task involvement.

• When developing work schedules, highly preferred activities should follow less preferred tasks so that they can be used as contingent reward for the satisfactory completion of less preferred activities.

• Specific incentive programs and behavioral contracts that specifically target increasing ‘on task’ time as well as performance accuracy can be helpful.

• A dual grading system might also be considered in which a student receives credit and recognition for his involvement, effort and participation as well as for work completion and task accuracy.

• Given the wide variation in daily functioning due to attentional issues and impulsive/compulsive behavior, evaluation procedures may need to be based on an optional task or skill performance rather than on performance averages. It is important to remember that even minor changes in task format or work sheet organization can contribute to performance inequities. In addition, standardized testing procedures will probably underestimate skill acquisition.

• It will be essential to provide direct support in the organization of time, work materials and written output. The use of an assignment book for class work and homework will be helpful. The book will need to be jointly reviewed and revised by students and teachers routinely throughout the day as a way of developing and updating ‘to do’ plans, work schedules and contracts.

• Independent work periods will need to be preceded by a period of discussion with a teacher in order to clarify task demands as well as to assist the student in generating an effective strategy. At the completion of critical portions of the assignment, routine check-ins with the teacher are necessary in order to review strategy use and effectiveness.

Obsessive Compulsive Tendencies

• If the child must repeat, rewrite or erase as part of their OCB, and is unable to move forward, have the child dictate or produce work orally.

• Recognize that some rituals, although they may seem absurd, are necessary/uncontrollable for the child and they must be completed. The child with OCB may be simply unable to attend to the task at hand until a ritual is completed. The child may be able to discuss this with you privately. A goal should be to come up with a way for either the child to complete the ritual in the least disruptive fashion or to develop a plan whereby the ritual is done when it is least obtrusive. Sometimes you can use the ritual as a bargaining chip. (If you do x, y and z, then you may line the chairs up.)

• Keep the parents informed and work closely with the child’s clinician. Many children with obsessive-compulsive behavior can benefit from medication intervention.

• For those excessively perseverative children who get ‘stuck’ on an idea, recognize it for what it is. Try not to get drawn into battles over these perseverative thoughts. You will lose! Use diversion and maintain a sense of humor about it. Keep your wind out of their sails. Withdraw from arguments which is not to say that you ‘give in’, but rather, you don’t get into the argument.

• For children who have difficulty with transitions and are inflexible and rigid, prepare them well in advance for schedule changes or deviation from routines whenever possible. Rather than locking horns over seemingly rigid demands (for example, a child who always has to have the window open ‘just so’), privately develop a plan with the child whereby everyone’s needs can be met. Help the child be part of the solution to the problem in a non-confrontational way. Non-confrontational approaches yield better results. It is hard for many children with OCB to let go of an idea and they will hold out longer than seems reasonable. It’s not that they are being purposefully obstinate; they are ‘stuck’.

• Remember that for some children, OCB can be triggered by infection, particularly strep (TSA has more information). About 80% of strep infections aren’t symptomatic, meaning that it is not associated with a sore throat and evidence of the infection is only detected by a throat culture and blood work. Keep parents informed if there is strep in the classroom. OCB, like tics, has neurobiological roots and is not now thought to be caused by psychic conflict. It can, however be aggravated by stress. Emotional lability can also be worsened by strep infections.

• The single most important thing that a teacher or parent can do is to assume a calm, supportive, upbeat approach to symptoms. Because of the child’s emotional lability and suggestibility, the child ‘borrows’ the emotional tone and outlook of those around. It is most helpful for the teacher and parent to assume a stance of understanding and compassion without any overt indications of sympathy. Conveying a ‘poor you’ attitude can cause a child to throw up hands in despair and become a passive victim of symptoms. It is vital for adults to assume the role of a coach or cheerleader who models a calm, confident, optimistic, problem-solving, solution-seeking approach to problems as they arise.

• Often children with OCB use parents and teachers for reassurance during an OCB ritual such as checking. Set limits on how much you will participate in the child’s ritual. One reassurance is enough, letting them know that you won’t keep reassuring. If requests for reassurance persist, tell them, “Oh, that’s just your OCD.” Change the subject or ignore requests for reassurance if they continue. Try to ignore without obvious anger, using humor and calmness when possible.

• It is best not to explore symptom expressions or symptom complaints in a traditional ‘uncovering’ or therapeutic way. Rather it is far more helpful to encourage the student to actively deal with the symptoms, by conveying the expectation that the agreed upon plan needs to be followed.

• Distraction and active engagement in activities should be used as much as possible.

• Symptoms should never become a reason to not participate in classroom or family activities. During periods of symptom exacerbation (and therefore increased preoccupation) additional structure needs to be provided to increase active participation. At these times, the child will need frequent and on-going redirection. Individual work periods should be shortened. When preoccupied, students need active, interactive learning experiences as well as structured opportunities to work collaboratively with peers.

• For panic and anxiety symptoms, children need to be encouraged to develop and utilize self-soothing strategies to combat overwhelming anxiety. They often need prompts and reminders to use these strategies in the classroom and at home. It will be essential for teachers and parents to work collaboratively with the child’s therapist to know what strategies are being taught. Such strategies include deep muscle relaxation, guided imagery and gradual/graded exposure. Frame anxiety as an external enemy to be actively fought against (“It’s just old pesky Mr. OCD again.”) rather than as an enduring personal trait (“You’re anxious.”).

• Intrusive images and recurrent thoughts are most likely to increase when the child is overwhelmed or bored. Utilize symptom exacerbation as a barometer to change the selection and pacing of academic tasks. Encourage the child to employ the strategies that have been learned in the past to deal with obsessive ruminations.

• It can be empowering for the child to be held accountable for using his/her coping skills when it counts in the classroom and at home. Teacher and parents need to provide prompts and reminders as well as quiet places and opportunities for the child to utilize these strategies. Daily charts and incentive programs can be helpful to promote follow-through. In addition, it may be possible to utilize more benign and less intrusive symptoms (obsession with certain less disruptive activities or collectible items) to help combat more distressing or intrusive or life-limiting symptoms. For example, a student who has an obsession with the color pink can have worksheets run off on pink paper as an incentive to improve task involvement.

For Short Fuse, Oppositional Behavior, Self Control Difficulty

Susan Conners writes: Children with TS and ADHD are very easily frustrated. They live day in and day out with a disorder that never allows them to be still. Their bodies are constantly out of control. Their bodies can constantly hurt from the persistent tics. It takes very little to set these children off. Large crowds, noisy situations and disorganization in the classroom, bus or lunchroom also very easily over stimulate them. Some of the most difficult times for these children can be in the hallways between classes, in the cafeteria and on the school bus. Not only are these noisy, unstructured situations, there is also less, if any, adult supervision.

Our recommendations are:

• Remember impulse control problems may not be an expression of bad behavior, rather it may be an expression of neurobiological disturbances. Children with TS don’t want to be out of control. They don’t know how to avoid situations where this can happen.

• Identify and anticipate the settings in which the child is most likely to lose control. Is it in the cafeteria, busy hallway, or the school bus? Determine what you can do differently to structure the experience. Consider an alternate plan such as a lunchroom in a classroom where board games are also available. Susan Conners has such an arrangement for students at her school. Each child who ‘needs’ to be there is allowed to bring one child who doesn’t as a ‘lunch buddy’. That way, it becomes a privilege and not a punishment. On the school bus, seat the child near the bus driver or bus monitor who has been educated about TS.

• Parents may notice certain ‘trouble spots’ where the child tends to lose control. For example, many children have difficulty while shopping with a parent. In the supermarket, bring a special toy, comic book or portable cassette player with earphones so the child may listen to a taped story; or, do the shopping without the child. In general, don’t expect a different result without some change of the environment.

• Children with poor internal controls can develop a controlling way of managing their environment. Their attempt to ‘take charge,’ which should be understood as an anxiety management or self-control strategy can often result in attempts to negotiate or resist adult direction. Children with neurobiological impulse disorders need to have a certain measure of control over activities and routines. Helping the child to exercise control over those aspects of his day that are appropriate for him to manage can minimize control struggles. Providing reasonable choices should reduce the frequency of refusals and/or attempts to negotiate terms. For example, allowing the student to have some input into the order in which assignments are accomplished (or the time frame required) may improve compliance.

• Teachers and parents will be better able to make adjustments in expectations when they view compulsive and non-compliant behavior as an indicator of a child’s level of fatigue, anxiety, agitation, distractibility and stress tolerance.

• With respect to verbal blurting out during classroom discussions, it is helpful for the student and teacher to have an established signal to indicate to the child when comments have become too frequent or inappropriate. A continuum of behavioral options will need to be in place in order to assist the child to reign in behavior or to ‘put on the brakes’. These behavioral options should be designed to help the child focus attention, relax and/or inhibit impulsive responding. When the student has become excessively verbally disinhibited the teacher will need to choose acceptable ways to end the child’s participation such as having the student take a walk, work in a quiet place or work on an alternative activity.

Discipline

Discipline is only effective within the context of a supportive, mentoring relationship. It is essential that adults convey an appreciation of what it must be like for a child to be trapped in a body out of control or to have a body that does unwanted, unpredictable, undesirable and embarrassing things. It is imperative to convey your respect for their heroic efforts to maintain self-control or to accomplish daily tasks.

• Use a low volume, calm, non-emotional tone of voice. Children will mirror any anger or loss of control. Anger only escalates the situation. Any child will spin out of control when they become ‘wound up’ by someone else’s anger. Discipline should be quiet, private and non-confrontational. It should not embarrass the child. Remember that the word discipline comes from the same word as disciple. The Disciples were people who followed a good leader’s example. They did not follow because they were punished but because they believed in the message and felt the respect of their leader.

• The focus of discipline should be positive, problem solving and solution seeking. Don’t scream, lecture or plead. “You’re a good boy/girl, and I know what happened upset you. Let’s figure out what happened, because I know you don’t want it to happen again.”

• Again, don’t ‘lock horns’. You will lose! Big blow-ups tend to occur when people ‘lock horns’ with perseverative children. Instead, use diversion, make a joke, fool around. Recognize what is happening. Try to analyze what has taken place and make plans for your handling things differently the next time.

• Learn to read the child’s cues of irritability, impatience, inflexibility, resistiveness and volatility as signals that something is ‘too much’ for the child. Some sort of demand that is being made of the child is more than they can handle. This is somewhat like a tiger getting cornered. Is it the situation? A task? An interaction with another person? Figure out what is ‘too much’. What is the child trying to bring back under control? Step back and analyze the situation. Perhaps the environment can be altered. (For example, if the child tends to lose control when there is a lot of noise, activity and conflict around, find ways to avoid putting the child into that situation. Intervene directly to reduce the noise, activity and conflict such as turning off the TV, finding alternative activities, separating siblings and getting them started on alternative projects.) If trouble is brewing, intervene to alter the situation before things explode.