Presentation on theme: "IN-SERVICE FOR EDUCATORS Tourette Syndrome Association of Texas"— Presentation transcript:
1IN-SERVICE FOR EDUCATORS Tourette Syndrome Association of Texas Helping Children and Changing LivesIN-SERVICE FOR EDUCATORS Tourette Syndrome Association of TexasSheryl Kadmon – TSA of Texas Executive Director
2What is Tourette’s syndrome? Tourette’s syndrome is a complex, brain-based neurobehavioral movement disorder.Diagnostic Criteria for Tourette’s syndromeBoth multiple motor and one or more vocal tics have been present at some time during the illness, although not necessarily concurrently.(A tic is a sudden, rapid, recurrent, nonrhythmic, stereotyped motor movement or vocalization.)The tics occur many time a day (usually in bouts) nearly every day or intermittently throughout a period of more than one year.---and---During this period there was never a tic-free period of more than three consecutive months.Causes marked distress or significant impairment in social, occupational or other important areas of functioning.Onset is before age 18 years.The disturbance is not due to the direct physiological effects of a substance (e.g., stimulants) or a general medical condition (e.g., Huntingon’s disease or postural encephalitis).
3General Facts About Tourette’s syndrome Not a diseaseAppears to be genetically inherited in majority of patients (autosomal dominant)Often misdiagnosed as allergies, dermatitis, bad habits, nervousness and other conditions)Between two and three percent of the U.S. population may have TS. In Texas: over one-half million people3-4 times more common in malesIncidence may be as high as:1 : 100 school age boys1 : 300 to 1 : 400 school age girlsOr higherAll ethnic groups are similarly affectedMany are educationally and/or artistically giftedLess than 15% exhibit coprolaliaExact etiology remains unknownNo cureSimple tics are as common as 1:3 in children
4Categories of Tics Motor Vocal (phonic) Simple & Complex Simple & Abrupt, sudden, single or repetitive, isolated movements occurring out of a background of normal activityExamples:Blinking, transient eye deviations, nose twitching, mouth and jaw movements, head shaking, facial grimacing, shoulder shrugs, finger movements, abdominal muscle contractions.Complex:Complex coordinated patterns of sequential movements which may appear purposeful. May be slower and longer, may or may not resemble normal movements, but are inappropriately intense and timed.Touching, throwing, hitting, jumping, kicking, squatting, hand gesturing, grabbing, copropraxia (obscene gestures), echopraxia (imitation of gestures or movements of others), head banging, hand clapping, tearing paper while writing, trunk-pelvic gyrating, and bending movements.SimpleSingle sounds or noisesExamples:Throat clearing, grunting, sniffing, squeaking, coughing, barking, humming, screaming, whistling, blowing, suckingComplex:VerbalizationsCoprolalia (involuntary obscene, aggressive or otherwise socially unacceptable words or phrases), echolalia (involuntary parrot-like repetition of another’s words), palilalia (involuntary repetition of one’s own words or sentences)Linguistically meaningful utterances“Shut up” - “Oh, ok”“Now you’ve done it” - “You’re fat”Speech atypicalitiesUnusual rhythms, tones, intensity of speech (especially loud), stuttering, or “baby talk”
5Phenomenology of Tics Involuntary Waxing and waning in frequency, intensity, and distributionMay be volitionally suppressed (temporarily – from seconds to hours) through intense mental effortExacerbate with stress, excitement, fatigue, boredom, and heat exposureMay be suppressed during mental or physical tasks requiring intense concentrationAre characterized by suggestibility
6Behavioral Difficulties Associated with Tourette’s Syndrome Obsessive Compulsive Disorder (OCD)Attention Deficit Hyperactivity Disorder (ADHD)Inattentive typeHyperactive / impulsive typeCombined typeImpulsivity – disinhibition of thoughts and actionsLearning differencesEmotional instabilityIrritabilityOppositional behaviorAnger outburstsAggressive behaviorProblems with Executive FunctionAnxiety, phobias, panic, and depressionInappropriate sexual behavior and mental coprolaliaSocial adjustment problems, worse in teen yearsSleep disorders and enuresis (bed-wetting)
7Educational Problems Areas of difficulty SpellingWritingReadingMathLong classroom / homework assignmentsTimed TestsSocial SkillsExecutive FunctionHigher incidence of learning disabilitiesInconsistent performanceAdditional Problems:Visual-motor integration difficultiesCopyingNote takingDifficulty demonstrating knowledge in writing (transferring thoughts onto paper)Graphomotor dysfunctionHandwritingHolding pencil
8Obsessive-Compulsive Disorder (OCD) ObsessionsIntrusive and recurring thoughts and images which are disturbingCannot be suppressed and disrupt functioningCompulsionsIrresistible urges or impulses to repeat ritualistic acts over and overShares chronic waxing and waning course of T.S. and is exacerbated by stressAuditory and short term memory deficit / mental ticsRewriting until “perfect”Counting words or lines on page prior to readingChecking things over and overConstant doubt and worryingGerm obsessionRitualistic behavior
9Attention Deficit Disorder -- ADHD DisinhibitionInability to remain seatedBlurting answers when not calledRestlessnessDisorganizationGetting started on a taskRegulating the intensity of their emotional responseTransitions
10Educational Problems (cont.) TicsLoud disturbing tics or distracting movementsHand, arm or body movements when writingNeck, facial or other body movements when readingExecutive FunctionDifficulty with:Goal formationPlanningEnactionEvaluationSelf-regulationSensory IntegrationSensory and tactile defensivenessPoor auditory discriminationSensitivity to noises, light, touch, and/or odors
11Educational Problems (cont.) SocialDifficulty in daily lifePeer rejections – difficulty making friends and maintaining relationshipsLoss of positive body image – embarrassing ticsPoor self-esteemDifficulty with group activities and with team sportsTeacher intoleranceMisreading social cuesSocially cluelessMaturation below age levelTeased, mocked, bullied and shunnedMedication Side EffectsDrowsinessFatigueHyperactivityDepressionWeight gain or weight lossHeat intoleranceLoss of memory (short and long term)IrritabilityLight-headednessDry mouthTardive dyskinesiaAggressionAbsence of tics mistaken for resolution of Tourette’s syndrome
12Four Point Treatment Modality of Tourette’s syndrome Pharmacological InterventionsPsychotherapy / CounselingCommon SenseAdaptation of School Environment
13Pharmacologic Interventions Since pathophysiology is unknown, pharmacologic treatment is purely symptomatic.Therapeutic doses change as symptoms wax and wane.No magic formula. Based on trial and error.The goal is to achieve a tolerable suppression of the symptoms.May be on multiple medications, each targeting a specific symptom.ADHDRitalin (Methylphenidate)Dexedrine (Dextroamphetamine)Intuniv (Guanfacine)AdderallConcerta (Methlyphenidate HC)Focalin XR (Dexmethlyphenidate)Strattera (Atomoxetine)Cylert (Pemoline)Catapres (Clonidine)Metadate CD (Methylphenidate HCl)Methylin (Methylphenidate oral solution or chewable tablets)Daytrana (Transdermal methyphendiate, once-a-day patch)Vyvance (Lisdexamfetamine)Kapvay (clonidine hydrocholoride)Vayarin (Phosphatidylserine and omega-3 fatty acids)Tics (motor and phonic)Orap (Pimozide)Prolixin (Fluphenazide)Haldol (Haloperidol)Risperdal (Risperidone)Zyprexa (Olanzapine)Abilify (Aripiprazole)Topamax (Topiramate)Botulinum toxin injections for focal ticsXenazine (Tetrabenazine)Tenex / Tenex CR (Guanfacine)
15Psychotherapy / Counseling Will not remediate behavioral problems associated with Tourette’s SyndromeWill provide supportWill help increase self-esteemWill help family cope
16Common Sense Approach Diet Exercise Rest Well-balanced diet with emphasis on high protein, high nutrient valuesLower consumption of foods with high sugar content (simple carbohydrates)- can help control mood swingsIncrease consumption of whole grains and vegetables (complex carbohydrates)Avoid caffeine and foods with additives or dyes – can reduce anxietyMulti vitamin and fish oil (Omega 3) could be helpfulB6 – may reduce tics and increase cognitive functionMagnesium – too little can cause irritability, hyperactivity, aggressive behavior and sleep disordersExerciseWill increase endorphins and sense of well-beingCounterbalances possible weight gain due to medicationsImproves focus and reduces stressRestProper rest is critical
17Other Psychological Approaches Cognitive-behavioral therapy (for OCD)Contra-indicated when accompanied by ADHDCognitive-behavioral intervention for tics (CBIT)Substitution of one tic for anotherHabit reversal therapy (for OCD)Has historically been unsuccessfulHRT substitutes a competing action (e.g., looking at a watch) for a disabling or socially embarrassing ticBio-feedbackMay help promote relaxationMay decrease anxietyDoes not directly affect tics
18Alternative Therapies Many alternative therapies availableMost claims are unproven scientifically and promise remarkable resultsMost successful include:Diet and vitamin supplements, often mega-dosed and based upon specifically determined allergies, are available through certified medical professionals.
19Adaptation of School Environment GOLDEN RULE: Avoid academic frustration / stress by teaching compensatory strategies and utilizing appropriate accommodations. (Stress exacerbates all symptoms and behaviors.)Classify Tourette student as Other Health Impaired (OHI) / Special Education or Section 504 / Regular EducationIndividual Education Plan (IEP):Each Tourette child is unique because of diverse range of symptoms.Assessed for associated learning disabilities (LD)Use of ancillary professional services:School counselor / psychologist, OT, PT, adaptive PEPlaced in regular classroom with modifications as necessaryCommon Adaptations:Decrease all paper and pencil tasksPreferential seatingCopy of notes provided by teacher / NCR paperShorten writing assignments or oral assignmentsUse of scribeUse of graph paperUse tape recorders, calculators, and computers when necessaryOral testingNo timed testingExtended time for testingFrequent breaksExtended time to complete assignmentsSafe place to discharge tics or emotionsAllow frequent movement in classroomSpecial homework plan:Bi-weekly communication via generated by parent (Tu/Thur)Trapper Keeper or special homework folderWeekly assignment sheet of homework and test datesSet of textbooks to keep at home
20Common Behavioral Accommodations and Directives for Implementation Contained classroom is not necessary nor appropriate to implement.Planned ignoring – tics- Tics will worsen if attention is focused on them (increasing anxiety)- Pass to Nurse for a short time if tics are overwhelming or disruptiveUse calm, quiet voice for directives and corrections (child is neurologically over stimulated; quiet voice will help refocus)Avoid direct confrontation. Use redirection whenever possible to prevent obsessive-compulsive neuro-rigidity “oppositionality.”Transition time both physically and for directives (Allows brain to engage and disengage from tasks)Stepwise directives and rulesProvide structure and clear understanding of expectations with flexibility for waxing and waning of symptomsProvide increased supervision in unstructured settings, i.e., lunch, P.E. and recessQuiet area to regroup/gain control when over-stimulatedUse positive reinforcementDo not apply immediate consequences (whenever possible) after escalated behavior has occurred. Wait until child has calmed before disciplining. (Will avoid continued or rapid re-escalation.) REMEMBER: Stress exacerbates all symptoms and behaviors!
21Specific Classroom Interventions Classroom EnvironmentPreferential seatingProvide student with an “office” desk when they require privacy to do their independent work. Do not remove the student’s group seat. Allow two desks for child.Keep an extra supply of pencils, paper, etc, for student.Allow student frequent breaks from classroom and / or frequent movement within classroom to release tic and excess energy (drinks, restroom, errand runner, etc.).Eliminate all unnecessary materials from student desk to reduce unwanted distractions.Provide a quiet / safe place for student when tics are severe.Use checklists to help students get organized.Have agreed upon cue for student to leave classroom.
22Specific Classroom Interventions (cont.) Time Management / TransitionsAlert with several reminders, several minutes apart, before changing from one activity to another (classroom changes, lesson changes, recess, lunch, etc.).Provide additional time to complete a task. Allow extra time to turn in homework, without penalties.Reduce amount of work load (even #s, half of page).Do not modify essential elements of curriculum unless necessary.Space short work periods with breaks.Alternate quiet and active times, allowing for transition time.Since many children with TS and OCD expend a large amount of energy suppressing tics at school, a reduction in the amount of homework may be necessary by as much as 50%.
23Specific Classroom Interventions (cont.) Material PresentationBreak assignments into segments or shorter tasks.Present written material ½ to 1 page at a time and decrease crowding.Introduce one concept at a time with as few words as possibles.Give only 1-2 step directions; require students to repeat directions to ensure clarity.Break long term assignments into small sequential steps, with daily monitoring and frequent grading.Provide incentives for beginning and completing material.Allow student to utilize computer, tape recorder, and / or calculator.Allow peer to provide class notes for student.Teacher or peer may copy down daily homework assignments or check for accuracy.
24Specific Classroom Interventions (cont.) OrganizationWeekly assignment sheet of homework and test dates, checked for accuracy or written down by teacher / corroborated by parent.Special “Trapper Keeper” or homework folder.Excellent communication between home and school via (preferred method), notes, or telephone.Extra set of textbooks to keep at home.
25Specific Classroom Interventions (cont.) Grading and TestsDivide tests into smaller sections.Grade spelling separately from content.Provide additional time to complete test.Avoid all timed tests.Provide a quiet setting for test taking.Provide movement and breaks during tests.Permit student to rework missed problems for better grade.Oral testing, if necessary.HandwritingDecrease all paper and pencil tasks (both in class and homework).Provide a computer.Use worksheets that require minimal writing / fill in the blank.Provide a designated note taker, NCR paper, a copy of another student’s notes, or teacher’s notes (do not expect student with few or no friends to make own arrangements).Avoid pressure of speed and accuracy.Allow student to type or record responses.Grade on content, not handwriting.Allow parent to scribe for student at home.Allow student to select method writing which is most comfortable (cursive or manuscript).Consider providing paper with raised lines to assist with visual / spatial deficits.
26Specific Classroom Interventions (cont.) ReadingAllow student to sit in comfortable position.Allow student to use marker to follow along.Allow recorded textbooks or reader.Have student read comprehension questions before reading passage.Break reading assignments into smaller segments.Allow parent to read to student at home.Encourage student to use headphones to block out auditory distractions.Allow student to read aloud to himself, to another student, or into a tape recorder.BehaviorIgnore behaviors that are not seriously disruptive.Develop interventions for behaviors which are annoying but not deliberate (e.g., place a piece of foam rubber on desk for students who tap pencils or provide them with shorter pencils that they may tap into their hand).Develop a “system” or code word to let a student know when behavior is not appropriate.Arrange for student to voluntarily leave classroom and report to designated “safe place” when under high stress.Develop behavior intervention plan in stepwise fashion.
27EXAMPLE: Generic Academic and Behavioral Accommodations / Modifications (are appropriate for almost every student with T.S.)Episodic Issues(Tourette’s syndrome waxes and wanes and changes over time with no measure of predictability.)Practice flexibility with academic and behavioral expectations, especially when symptoms are exacerbated.Build in late arrival at school when exacerbated symptoms are present – e.g., sleep problems or difficulty with morning tasks.Tics(Parents – please write a symptom list to present. Update as tics change.)Increased movement in classroomExtended time for test taking- Increased difficulty testing due to blinking, hand, shoulder and torso movementsNo timed tests- Increased anxiety increases ticsSafe place to discharge tics or emotions- Pass to Nurse or other previously designated area Preferential seating – back of classroom close to door
28Generic Academic and Behavioral Accommodations / Modifications Con’t. Dysgraphia(Over 90% of all boys with T.S. are dysgraphic)Decrease all paper and pencil tasksProvide notes (student must still attempt note taking)Provide copy of homework assignmentFill-in-the-blank overheads and worksheetsUse of keyboard/computer whenever possibleScribe at home/school if necessaryShorten assignments without changing contentADHD(Intrinsic disorganization)Homework Plan (Mom will need to check binder everyday at first)- Will avoid a string of zeros- Extra home set of textbooks- Parent-generated s Tuesday and Thursday regarding assignments due and/or missing- Extended time (1-2 days) to complete missing assignments without penaltyShort structured breaks- Laminated pass for one three-minute break per 50 minutes
29Generic Academic and Behavioral Accommodations / Modifications Con’t. Obsessive Compulsive Disorder (OCD)Allow routines which are not disabling or intrusive, e.g., flipping light switch, sharpening pencilProvide compensatory strategies/objects for annoying behavior:- Soft object on end of pencil for tapping- Place in front of line and instruct to keep one arm length between others for compulsive touching- “Chewelry” for chewing shirts, pencils or other objectsAssess inattention (intrusive thoughts seriously disrupt learning)Avoid direct confrontation. Use redirection whenever possible to prevent obsessive-compulsive neuro-rigidity “oppositionality.”Provide transition time. (Allows brain to disengage and engage.)Provide reassurance for worries, fears or extreme perfection.Tactile IssuesHypersensitivity to noise and crowdsEarly dismissal from classroom (2-3 minutes)Use of earphones, earplugs, darkened glasses during designated times
30Generic Academic and Behavioral Accommodations / Modifications Con’t. Behavioral Accommodations and Directives for ImplementationContained classroom is not necessary nor appropriate to implement.Planned ignoring – tics- Tics will worsen if attention is focused on them (increasing anxiety)- Pass to Nurse for a short time if tics are overwhelming or disruptiveUse calm, quiet voice for directives and corrections (child is neurologically over stimulated; quiet voice will help refocus)Avoid direct confrontation. Use redirection whenever possible to prevent obsessive-compulsive neuro-rigidity “oppositionality.”Transition time both physically and for directivesAllows brain to engage and disengage from tasksStepwise directives and rules Provide structure and clear understanding of expectations with flexibility for waxing and waning of symptomsProvide increased supervision in unstructured settings, i.e., lunch, P.E. and recessQuiet area to regroup/gain control when over-stimulatedUse positive reinforcementDo not apply immediate consequences (whenever possible) after escalated behavior has occurred. Wait until child has calmed before disciplining. (Will avoid continued or rapid re-escalation.)Remember that stress exacerbates all symptoms and behaviors.Education of peers and school staff
31Prognosis Symptoms generally worsen during puberty. After puberty (approximately 17 years of age), almost all will have a marked decrease in the severity of symptoms.Normal life span.Most will lead productive lives in adulthood.10% or less will be functionally disabled.Many will reach high levels of achievement.
32Tourette Syndrome Association of Texas Services Educational:ConsultingIn-service programs for professionals, students, parents, and communityEducational programs, conferences, and conventionsDissemination of information – packets, brochures, telephone, webVideo-tape and reference libraryWebsiteReferral:PhysiciansTherapistsCommunity servicesState and county agenciesSources of financial aidSources of legal aidSupport Groups:Austin - LubbockCorpus Christi - North Houston/The WoodlandsDallas/North Texas - Rio Grande Valley- Fort Worth - San AntonioGolden Triangle - TylerGulf Coast area - Adult Social Groups:Katy/West Houston/Sugar Land Austin & HoustonAdvocacy:Educational and legal empowermentCounseling:Lay CounselingProfessional counselingSpecial funding:Kenneth H. Davis Memorial Family Assistance Fund– Direct Client ServicesPatricia Gray Guarno Pranke Educational Scholarship Funddu Ballon RougeWeekend children’s camping programNewsletterBrain Bank ProgramCrisis Intervention24 Hour Emergency Response via Pager at:
33Du Ballon Rouge Tourette Syndrome Association of Texas Children’s Camping Weekend Sending your wish, by red balloon, into a clear, blue Texas sky with hopes that it will come true – anything is possible at du Ballon Rouge!du Ballon Rouge (dBR) is a unique time and place. Held annually in the hill country of Texas, dBR provides a setting for children with Tourette’s syndrome to experience events and activities that can change the quality and outcome of their life.“To enrich the lives of children diagnosed with Tourette’s syndrome, through a unique outdoor experience that offers acceptance, provides hope, promotes discovery, and creates the opportunity to establish relationships with others afflicted by TS” – that’s our mission! Acceptance. Campers feel better because they can relax, have fun, and not be concerned about hiding their symptoms. They feel accepted because of who they are and not excluded because of their disorder.Hope. Campers express hope, through challenging activities, interaction with others, and a supportive staff, that their lives can be successful and fun.Discovery. Campers are exposed to activities and situations they may not have previously experienced. Smiles of accomplishment and understanding fill the weekend as campers discover unknown talents and interests.Relationships. The weekend provides the setting for participants to make new friends. New campers may be shy and uncomfortable with their new surroundings. However, new friendships can begin to develop immediately and continue to grow throughout the weekend. Many campers have shared similar experiences, remained in contact, and do things together once the weekend has ended.
34Du Ballon Rouge Con’t. The Program The program, founded in 2003, is designed for children between the ages of 6 and 18 whose primary diagnosis is Tourette’s syndrome (TS). Many participants exhibit other TS related conditions such as obsessive compulsive disorder (OCD) and attention deficit disorder (ADD). We are able to accommodate the needs of most campers, but the weekend outing has some limitations in accepting children whose needs are beyond the scope of its resources. Campers must be able to handle daily routines such as dressing and personal hygiene.Campers are assigned to cabins based on their age and gender. They experience activities both as a cabin and as a group. Weekend activities include fishing, horseback riding, canoeing, arts and crafts, ropes challenge course, swimming, and team sports. The environment is fun, safe, and positive, and campers, while challenged to reach their individual potential, are not required to participate.The FacilityDBR is held at Camp For All, a unique camping and retreat facility located in Burton, Texas, which is about 90 miles from Houston. Camp For All (CFA) works together with many special needs groups in providing programs that are “recreational, therapeutic, and educational.” The CFA staff is professionally trained and is compassionate and supportive of each special needs group. You may access their website, for more information.Counselors and dBR StaffThe staff of dBR are volunteers dedicated to providing the best experience for our campers. Our staff includes adults with Tourette’s syndrome, outdoor experience, and medical training. Staff members attend training sessions and are prepared for the weekend. With properly executed parental authorization, the medical personnel handles all medications and medical issues for campers.
36A Final Thought:Susan Conners, M.Ed., a world renowned advocate and expert oneducating children with TS states:“Tourette’s syndrome is not a fatal disease, but children die slowly from it each day. Their spirit, their potential, and their self esteem are affected.TS is not responsible – ignorance is.”Thanks to:Parkinson’s Disease Center and Movement Disorders Clinic: Joseph Jankovic, M.D.Texas Children’s Hospital, Blue Bird Pediatric Neurology Clinic: Amber Stocco, M.D.Joshua Center: Becky OttingerJamie Blassingame, LLSPCarol Brady, Ph.D.Margaret Farnsworth, MA, RD, LD
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