Understanding Tourette Syndrome, Related Disorders And Effective Interventions Kathy Giordano,...

Understanding Tourette Understanding Tourette Syndrome, Related Syndrome, Related

DisordersDisordersAndAnd

Effective InterventionsEffective InterventionsKathy Giordano, Education Specialist, TSA

2Education, Research and Support

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Our Mission Is To Identify The Cause Of, Find The Cure For And Control The Effects Of Tourette Syndrome

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There’s Room for YOU!

Tourette Syndrome Assoc., Inc.


I’ve come to the conclusion that I am the decisive element in the classroom. It’s my personal approach that creates the climate. It’s my daily mood that makes the weather.

As a teacher, I possess a tremendous power to make a child’s life miserable or joyous. I can be a tool of torture or an instrument of inspiration. I can humiliate or honor, hurt or heal.

In all situations, it is my response that decides whether a crisis will be escalated or de-escalated and a child humanized or de-humanized.

– Haim Ginott

A Teacher’s PerspectiveA Teacher’s Perspective


“Don’t ever tell THEM what you like, because

they will either make you earn it or they will take it

away”

Teenage Boy

Wise WordsWise Words


““CHILDREN DO WELL CHILDREN DO WELL IF THEY IF THEY CANCAN””

““CHILDREN DO WELL CHILDREN DO WELL IF THEY IF THEY CANCAN””

“If a child is NOT doing well, there may be a Universe of explanations”.

“If they CAN’T, then it is the job of the adults to figure out why so that they CAN.”

Dr. Ross Greene “The Explosive Child”


Major Life Lesson We Cannot FIX! – They are not Broken!

BUT we Can & Must Provide Tools to help

Manage Their Lives


Educate the World

……..education is the key to success for people with neurological difficulties. Educate peers and there is less teasing; educate teachers, there is more positive support, with academic and personal success; educate parents, there is understanding, nurturing resulting in increased self-esteem; educate the person, there is pride in who they are; educate the world and there is more acceptance and an increased emphasis on strengths, acceptance and similarities rather than differences and difficulties .

7


Tourette SyndromeTourette Syndrome

• Neuro-biological disorder• Genetic • Involuntary • More common than once

thought • Symptoms involve both motor

and vocal tics• Due to the nature of TS,

symptoms will vary from person to person


Motor TicsMotor Tics

Simple Motor TicsEye blinking, grimacing, nose

twitching, leg movements, shoulder shrugs, arm and head jerks, etc.

Complex Motor TicsHopping, clapping, throwing,

touching (self, others, objects)Holding funny expressions,

sticking out the tongue, kissing, pinching, tearing paper or books, etc.


Vocal Tics

Simple Vocal TicsWhistling, coughing, sniffling,

screeching, animal noises, grunting, throat clearing, etc.

Complex Vocal TicsLinguistically meaningful utterances

Coprolalia (racial slurs, inappropriate language), repeating words/phrases

Speech AtypicalitiesUnusual rhythms, tone accents, intensity

of speech, stutter-like, immature voice

Do Not Need To Swear


The Nature of Tics

• Naturally wax and wane

• Change in appearance and frequency

• Change in severity and intensity– May worsen during adolescence

• Can sometimes be suppressed for short periods of time– But suppression may cause unanticipated

and undesirable consequences

• Important: The Only thing

consistent about TS is the

Inconsistency


• Stress

• Anxiety

• Excitement

• Fatigue

• Holidays

• Illness

• Vacations

• Hunger

• Life & School Transitions

Environmental Factors May Impact TS Symptoms


General Suggestions for TicsGeneral Suggestions for Tics

Reduce Stress!!!! Most important and effective

Planned Ignorance & Acceptance of tics =

less frequent and with less intensity

Ask permission to explain to peers “I Have TS but TS Doesn’t Have Me” Video TS Youth Ambassador


Suggestion for Tics

Loud and more obvious (disruptive?) symptomsA private place where tics can be expressedIndividualize approach – talk with student &

parent

Snack? Water? Exercise? Sleep/rest? Helping out? Enjoyable activity? Reduce boredom? Quiet place to ‘chill’

Try not to take symptoms personally


“YOUR EXPLANATION OF A

BEHAVIOR

LEADS DIRECTLY TO

HOW YOU RESPOND TO IT.”

Elevator story

DR. ROSS GREENE, Ph.D.DR. ROSS GREENE, Ph.D.

16Education, Research and Support 16

Federal Regulations 300.8(c)(9)Comment Section

“We believe that Tourette syndrome is commonly misunderstood to be a behavioral or emotional condition, rather than a neurological condition. Therefore including Tourette syndrome in definition of other health impairment may help correct the misperception of Tourette syndrome as a behavioral or conduct disorder and prevent the misdiagnosis of their needs.”


Negative Perspective of Behavior(the child IS a problem)

meandisrespectful

deliberate

angrythreatened

punishoffer ultimatum

PACER Center, Inc., 1999


Positive Perspective of Behavior(the child HAS a problem)

unhappydiscouragedfrustrated

concernempathy

supportencourage

helpPACER Center, Inc., 1999


Educate the World

…….education is the key to success for people with neurological difficulties. Educate peers and there is less teasing; educate teachers, there is more positive support, with academic and personal success; educate parents, there is understanding, nurturing resulting in increased self-esteem; educate the person, there is pride in who they are; educate the world and there is more acceptance and an increased emphasis on strengths, acceptance and similarities rather than differences and difficulties .


“Information is not Knowledge,Knowledge is not Wisdom,

AndWisdom is not Foresight.

ButInformation is the first

essential stepTo all of these.”

Arthur C. ClarkArthur C. Clark

Positive and Proactive InterventionsPositive and Proactive Interventions


TOURETTE SYNDROME

Sensitive

Distractable

Creative

Athletic

ART

CreativeWriting

Music

“Typical” Strengths

Focused

Science

Humor

Charm


TOURETTE SYNDROME

OCD

Social Skills

Executive Dysfunction.

Sensory ADHD

Hand-writing

Anxiety

“Typical” Related Issues

LD Impulsive

Sleep

Tics

DisinhibitionAutism Spectru

m Gifted


Giftedness disguises disabilities

Disabilities disguise Giftedness

Unknown


DysinhibitionDysinhibition

“A condition in people with primary neurological disorders that limit a

person’s ability to use his inhibitory process and learned inhibitory skills.”

“The individual experiences involuntary behaviors that include contextual

swearing, free-associative comments, emotional outbursts, rage, infantile

behaviors……...” Rose Woods

“Dysinhibition Syndrome”


ImpulsivityImpulsivity

“REDUCESABILITY TOFILTER & INHIBIT

BEHAVIORS”Mental Brakes

Malfunction


THE PLATINUM RULETHE PLATINUM RULE

WHAT CAN WE DO FOR THE STUDENT PRIOR TO THE BEHAVIOR INSTEAD OF WHAT DO WE DO TO

THEM AFTER THE BEHAVIOR HAS

OCCURRED?


• Obsessions– Intrusive and recurring thoughts and

images or impulses that your mind gets stuck on which are unpleasant and disrupt functioning

• Compulsions– Behaviors that are used to reduce the

anxiety accompanying the obsessions

• OCD and TS share chronic waxing and waning – Exacerbated by stress, excitement

and fatigue

• OCD is often not apparent to the teacher or other students

• OCD makes children feel isolated

Obsessive-Compulsive DisorderObsessive-Compulsive Disorder(OCD) and TS(OCD) and TS

Perfection & Anxiety


Kids would almost always rather be bad than to be

‘weird’.


What to do for anxiety &What to do for anxiety &OCD symptomsOCD symptoms

Strategize with student To-do-later folder Copropraxia – poker chips

Develop Plan with student – Everyone sign Number of bathroom passes for the day Remove trigger (fire alarm) Class Schedule in clear location Trusted Adult Back-up for trusted adult

Cognitive Behavior Therapy

Be aware of whether strategy increasing anxiety


ANXIETYANXIETY

“ANXIETY IS ALWAYS THE ENEMY OF INTELLIGENCE.”

“The minute anxiety arises, intelligence closes to search for anything that relieves the anxiety.”

Joseph Chilton Pearson


Neurological “Meltdown”Neurological “Meltdown”

A cumulative effect – Rick LaVoie

“Vase” overflows and reaction frequently

Undesirable!

Question: How do we reduce “vase” so less likely to

overflow?


Dysgraphia - Written Language LDDysgraphia - Written Language LD

Characteristics may include

Slow and laborious writingHand and finger crampingSloppy handwriting, e.g., uneven

spacing, irregular margins, and inconsistent lettering

Inability to copy correctly from book to paper or board to paper

Inability to transfer thoughts onto paper

Perfection

Often can be addressed with the use of computer technologies


What to do Dysgraphia or Written Language LDWhat to do Dysgraphia or Written Language LD

Evaluations for Writing LD, Possible Assistive Technology Evaluations

Give extra assistance in class Use a scribe, provide class notes, study

guides, alternatives methods of testingBe proactive with assistive technology

Research frequently changing assistive computer software (organization) Teach keyboarding earlyUse of computer at home and in class


Processing SpeedProcessing Speed

• Difficulty following directions, whether simple or complicated

• Difficulty processing abstract information, such as math word problems

• Difficulty following conversations• Difficulty with noisy

environments• Difficult responding quickly• Difficulty following thru with

information such as directions, lists


What to Do For What to Do For Processing DifficultiesProcessing Difficulties

Provide extra time for responseDevelop a plan that allows student to know that

they will be asked a specific question Subtly provide extra cueing and prompting Provide directions both auditory and visuallyKeep directions briefProvide visual, auditory & concrete examplesAllow preferential seatingEncourage student to ask for clarification


Social Skills DeficitsSocial Skills Deficits

Students with social skills deficits will tend toBe socially immatureInteract better with adults

than with their peersExperience some anxiety in

social situationsDemonstrate lack of

judgmentExperience social rejectionMiss social cuesKnow what to do, but can’t

“in the moment”


Helping Social Skill DevelopHelping Social Skill Develop

Pragmatic language support (speech therapist)Use of social stories by counselor and the

classroom teachersParticipation in a social skills groupEncourage involvement in groups with similar

interestFocus on child’s strength/interest Carefully place student when doing group workEstablish a safe classroom

environment


Sensory Processing IssuesSensory Processing Issues

Can affect any of the senses; cause great anxiety for many children with TS

Common indicators are:Sensitivity to touch, Noise, smellsInability to tolerate the texture of

certain foods, fabrics, tags Sensitivity to bright or fluorescent

lightsEasily OverwhelmedBehaviors in unstructured settings


More Sensory IssuesMore Sensory Issues

Need for increased sensory input - Running into things purposefully, frequent hugs, painful actions

Experiencing “sensory tics” e.g. picking at scabs; biting nails, scratching, hurting or hitting self

Excessive chewing on clothes, or objectsDifficulty in highly over stimulating

environments such as the school bus, cafeteria, gym, hallways, etc

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What Can Be Done forWhat Can Be Done forSensory IssuesSensory Issues

Evaluation by occupational therapist trained in sensory processing issues

Sensory Diet - A plan is developed, explained and followed by all adultsUse a headset to avoid auditory overload and

distractibility (with or without music)Chewing Gum – hard candyWeighted JacketExercise Ball/Bean Bag ChairScheduled or as needed drumming, activities,

etc.

Resources:1.OT ‘web video’ tsa-usa.org2.“Out-or-Sync Child” by Carol Kranowitz


Possible ModificationsPossible Modifications

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• Leave class 3-4 minutes early or late to avoid crowded hallways

• Avoid loud, chaotic environments• Find alternate place to eat lunch with friends • Allow Doodling, Movement, Sandpaper/Felt• Reduced Distractions• Separate Location for Tests• Designated Space for ‘quiet’ • Breaks• Be Creative


Oppositional Defiant Disorder (ODD) Oppositional Defiant Disorder (ODD)

“Chronically Inflexible” Dr. Ross Greene

Could be: Means of Communication

We Need to Look for Underlying Reason

SUCCESSSUCCESS

In order for some students to work hard, they must first experience success

Old Adage – In order to be successful, we must work hard!


“ But it’s not Fair……”

Fair Is Not Equal

And

Equal is notFair


Executive Function Deficits (EFD)

Executive Function = mental processes involved in goal-directed activity and ability to:plan and organizeremain focused and ignore distractionsretrieve and recall informationhave the ability to be flexible with changes in

routine when encountering unexpected situations

Keep track of TimeReflect on WorkWait to Speak until Called on


Ex. Func. Problems May Manifest As:

Difficulty planning and finishing a project

Locating Salient Information

Being Overwhelmed - Anxiety

Beginning; remaining focused; completing assignments

Struggles telling a story (verbally or in writing) – trouble communicating details in organized, sequential manner

Organizing thoughts, materials, - Learning strategies


SupportsConsultant/Resource Teacher/counselor

Assistance Managing Work Load Check Homework – end & beginning of day Test/quizzes - quiet, read to, ensure

understanding Trusted Person Checking in for progress on long term assignments

Teach Life-long strategies Organization Time Management Writing Skills Changing Strategies midstream Editing


Regular Kids

All walks of life & all professionsTS is an Equal Opportunity Disorder

o New Study – Caucasian boys; under reported in various cultures

Students with TS are kids firstTS is life long and at this time, there

is no cureSymptoms can look controllable

But they really aren’t You can hold your breath, but eventually

you will breathe.


Something to think about…..Something to think about…..

If a child doesn’t know how to read, we teach.

If a child doesn’t know how to swim, we teach.

If a child doesn’t know how to multiply, we teach.

If a child doesn’t know how to drive, we teach.

If a child doesn’t know how to behave, we………

………..teach? ………….punish?Why can’t we finish the last sentence as automatically as we do the others?

Tom Hemer (NASDE President) Counterpoint 1998


Symptoms or Behaviors?

Often complex symptoms are misunderstood to be purposeful

misbehaviors. Instead of punishment, symptoms require support which allow students to

be successful in spite of this complicated disorder.


Escalators

• Threaten consequences of a misbehavior ( stress)

• Plant the suggestion of misbehavior (dysinhibition – inability to inhibit)

• Restart the confrontation by immediately demanding difficult actions

• Rehash the incident in front of peers• Have more than one staff person discipline

student at once• Ignore or interrupt students attempts at

communication


Remain Calm physically & verbally

Provide time to shift gears (transition)

Avoid debates, sarcasm, Put Down, Power Struggle

Choose your battles carefully!!!!!

Avoid the word “no”

Why do Rewards sometimes ‘work’ ??

SuggestionsSuggestions


SuggestionsReduce Stress/Anxiety when possibleAllow Movement (doodling, gum chewing, etc)Promote hands-on activity Sensory dietConsultant, Resource Teacher

Study skillsOrganization strategies & supportEnd of Day check inBegin HW, ensure assignment written downAssist in Managing Workload/assignmentsChunk materialsExperiment with strategiesMeet with team to assist with understanding &

providing supports and strategies


Suggestions, cont’d

Avoid embarrassingAsk – what would help you (provide ideas)Let them know you are attempting to understandLet them know you are on their side; respectRecognize how difficult and exhausting this must

beRemember the only thing consistent is the

inconsistency Remind yourself – It Often APPEARS Purposeful


Suggestions, cont’d

Symptoms can be just about anything – Every person is Different; Resist generalizingInvisible symptoms can be most disruptiveAvoid ASSUMPTIONSYou WILL make mistakes and ok to discuss

with studentRemember – “Explanation for Behavior” & ‘All

students want to be successful’Do Not Take Behaviors Personally

We expect that consequences, usually negative, will put an end to behaviors that we believe to be ‘poor choices’ and replace those behaviors with those that we believe to be ‘better choices’.

•Works for 90% of students.

•What to do for the Other 10%

•Symptoms of complex neurological disorder?

•Some kids don’t have ability to process consequences in the manner that is “typical/normal”

Natural & Positive Consequence -- (group)


IDEA 2004 requires that an FBA be conducted and a behavior intervention plan be developed whenever the behavior of a student interferes with the ability of that or other students so that the behavior is less likely to re-occur.

Individuals with Disabilities Education Act (IDEA)

59

Functional Behavior AssessmentProcess of determining why an individual

engages in challenging behavior and how the behavior relates to the environment .

Positive & Proactive Behavior Intervention PlanA written plan that provides what supports,

accommodations and modifications (academic AND environmental) will be made by school to assist student and reduces likelihood of ‘behavior’ reoccurring. Reviewed as needed.


FBA/PBIPWorkbook for Functional Behavior Assessments

and Positive Behavior Intervention Plans for students with Tourette Syndrome, ADD, OCD, Autism Spectrum Looking for Function (avoidance, attention,

etc.) ??? OR a symptom or result of a symptom

Team Approach (include input from all providers, teachers, parents, child)

Example of a simple FBA & PBIP


Functional Behavioral Assessment Worksheetfor a Student with Tourette Syndrome

A) General InformationStudent’s Name ____________________________ Grade __________ Date ____________

Name of Person Completing Worksheet

__________________________

Position ________________________________________

FBA & PBIPFBA & PBIP


1) The specific behavior(s) impeding learning are:

__ Off task behavior __ Out of seat frequently __ Talking out in class __ Refusal to work __ Aggressive behaviors __ Disrespect __ Dysinhibition __ Socially inappropriate behavior with peers __ Other

______________________________________________________

____________________________________________________

B) Behaviors Observed


Describe precisely what the behavior looks like

____________________________________________

____________________________________________

____________________________________________

____________________________________________

____________________________________________

_______________________ Use back for more room


2) How often does the behavior occur? ____________________________

3) Where does the behavior occur?__ In a particular class (Indicate class) ____________________________ Hallway __ Cafeteria __ School bus __ Other____________________________________________________

4) Where does the behavior NOT occur?__ In a particular class (Indicate class) ____________________________ Hallway __ Cafeteria __ School bus __ Other


5) When does the behavior most frequently occur?

__ During completion of written work __ At transition times__ Testing situations__ In unstructured environments __ When tics are exacerbated __ In noisy environments__ Interacting with peers __ Working in groups__ During a specific task; (Reading, math, writing on board, using a pen or

pencil, etc.)__ When directions are being given (__ oral __ written __Simple__Complex)

__ Other______________________________________________________________________________


6) From # 2,3,4 & 5 which of the following conclusions might you draw as to the possible reasons for the behaviors?

__ Attention difficulties __ Interfering tics __ Difficulty transitioning__ Stress in testing situations __ Anxiety __ Poor social skills__ Difficulty with written work __ Difficulty processing directions__ Difficulty remaining seated __ Difficulty working with peers__ Interfering obsessions __ Sensory overload in noisy environments__ Sensory overload in unstructured environments__ Other ___________________________________________________________

___________________________________________________________

** It is always important to consider medication impacts when evaluating behaviors. Frequent communication with theschool nurse and the parents is crucial.


Suggestions for Supports

See Catalog of Accommodations for TS, etc.


Summary of Collected Worksheets by Facilitator

B) Behaviors Observed

1) The specific behaviors impeding learning are: (Target no more than 2 behaviors.)_________________________ _______________________________

2) How often does the behavior occur? _____________________________________3) Where does the behavior occur? ________________________________________________________________________________________________4) Where does the behavior NOT occur? _______________________________________________________________________________________________________________5) When does the behavior most frequently occur? _________________________________________________________________________________6) When does the behavior NOT occur ______________________


6) From # 2,3,4 & 5 which of the following conclusions might you draw as to the possible reasons for the behaviors?

__ Attentional difficulties __ Interfering tics __ Difficulty transitioning__ Stress in testing situations __ Anxiety __ Poor social skills__ Difficulty with written work __ Difficulty processing directions__ Difficulty remaining seated __ Difficulty working with peers__ Interfering obsessions__ Sensory overload in noisy environments__ Sensory overload in unstructured environments__ Other ________________________________________________________

SUMMARY – from Surveys


C) Strategies / Supports to be Implemented

1)What changes/supports are needed to decrease the likelihood of the behavior reoccurring?

__ Writing supports __ Homework reduction __ Organizational supports__ Testing modifications __ Assistance with directions __ Peer education__ Assistance with transition __ Social skills education__ Assistance in reducing anxiety__ Assistive Technology Evaluation__ Reduction in amount of time in unstructured situations__ Occupational Therapy/ Sensory Integration Evaluation & Supports__ Provide student with specific strategies to assist with impulsivity, dysinhibition or other symptoms

SUMMARY – from Surveys


Positive Behavior Intervention Plan

A) General InformationStudent Name _____________________Grade _____ Date _______

Name of person completing PBIP ___________ Position _______

B) Behaviors Targeted1) ____________________________________________________2) ____________________________________________________

C) Hypothesized Function of the Behaviors (From # 6 of the FBA)

_______________________________________________________

______________________________________________________


1) _______________________4)______________2) _______________________5)______________3) _______________________6)_______________

E) Environmental Changes to be Implemented by Staff1)_______________________3)__________________2) _______________________4)__________________

F) Positive Rewards (if appropriate) to be Provided to Student for Progress on the PBIP

___________________________________________________________________________________________

_____________________________________________________________________________________________

D) Behavioral Supports to be Implemented by Staff


2) What other positive interventions, accommodations, modifications, supports, etc. will be implemented by the staff to assist the student in maintaining appropriate behavior?

3) How are Student’s strengths used?

(See accompanying possible accommodation sheet)

Positive Supports


G) Communication Plan

1) Who will coordinate the PBIP?___________________________________________________

2) What is the date of the next PBIP review meeting?___________________________________________________

3) Has every teacher/ staff member working with the student received and signed the PBIP?__ yes __ no

4) Has the student and parents been informed of strategies?

__ yes __ no

** Be sure to include the list of possible accommodation sheet when this is shared with the child’s teachers. **


Critical Questions for FBA & PBIP

• Are there identifiable fast triggers?

• Are there identifiable slow triggers?

• Are there “warning signals” prior to behavior?

• Does the time of day play a role?

• Does general “mood” affect likelihood?

•What are the known techniques that reduce likelihood of occurrence?


Critical questions, cont’d

• How does the environment affect behavior?

• Do certain tasks, surroundings, events play a role?

• Are social, academic and task expectations reasonable?

• Does the student respond better to a different style of teaching and/or intervention?

• Are different motivators or incentives needed?


• Is it a result of dysinhibition?

• Is it either due to or an unrecognized symptom of related disorders? (Dysgraphia; Sensory; OCD)

• What are student’s strengths? How can they be used in positive fashion?

• Is student underachieving or bored? What specific support is required so this doesn’t occur?




• Does the student know what to do, but is not able to use this knowledge “in the moment”?

• Has the student been taught alternative response or skill and HOW are these being supported by all team members?

• Do we need to Un-teach difficult behaviors or Teach replacement strategies? (statistics show later)



•How are social skills? Need support?

• How is the word ‘consequence’ being interpreted by providers? Does it mean ‘punishment’? Or does it represent natural consequence of the behavior?

•How do learning deficits affect “behavior”

•Do we recognize & understand symptoms?

Is the behavior worthy of an FBA or is planned ignorance best?


James Patterson“If you are going around in circles,

Maybe you are cutting corners.”

‘Alex Cross – Nana’

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Contact TSA for More Information and Resources

Tourette Syndrome Association, Inc.42-40 Bell Boulevard, Suite 205Bayside, New York 11361-2820Tel: (718) 224-2999Fax: (718) 279-9596Email: [email protected]


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