Tourette’s in the Schools
Helping Families Navigate the System
DR. LORI RAPPAPORT
SAN DIEGO ADHD CENTER FOR SUCCESS
The Challenge of Tourette’s
■ Children with TS as a group have the same IQ range as the general
population
■ Some may have additional learning difficulties
■ Comorbidity of ADHD and OCD present additional challenges
■ Combination of the tics and presence of other disorders often result
in the need for assistance in the form of accommodations or special
education support
■ Parents worry about their child being able to remain in school and
be successful
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Common Co-Occuring Conditions
3
School From the TS Child’s Perspective
■ Takes tremendous energy and focus to suppress tics which leaves
less attention for learning
■ Self-consciousness and concern about impacting others (helpful to
point out that it bothers and affects the child more than others)
■ Presence of ADHD and/or OCD takes more of the energy available
■ Silent reading time and test time may be highly stressful as they
require an increased amount of tic suppressing.
■ Child may “make it through” the day, but learn very little
■ ADDED COMPLICATION: Homework
■ DVD I Have Tourette’s But Tourette’s Does Not Have Me (HBO)
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Knowledge is Power
■ PARENTS NEED TO EDUCATE THEMSELVES
■
Parents fear their child will be labeled
■
Complicated by waxing and waning of disorder (“it’s going away…)
■
No benefit to hiding the diagnosis
■ Teachers can be helpful, but can’t respond appropriately if they are
not informed
■ Parents should not assume teachers/staff know what TS is, even when
they say they do (“be quiet for the test”)
■ Great variability among kids, how does it affect that child
■ Ongoing communication is critical
■ Important to include others such as babysitters, coaches,
extracurricular staff, religious school, and family members
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WHAT TEACHERS NEED TO KNOW
■ Tics can be simple or complex
■ Tics change, and can wax and wane. They are truly inconsistent.
■ Tics may appear to be purposeful, but are not within control of the
child.
■ Tics can be suggestible, so reminders are counterproductive.
■ Suppressing tics can affect academic performance.
■ Stress can increase tics. Stress almost always increases tics.
■ Informative written materials are available on Tourette Association
website (www.tourette.org), Helpful for parents to provide copies for
teachers
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Common Educational Challenges
■ Handwriting Issues/Dysgraphia
■ Sensory Issues
■ Difficulty Completing Homework
■ Stress and Anxiety
■ Disorganization
■ Impulsivity
■ Perfectionism
■ Disinhibition
■ Difficulty Attending
■ Oppositional Behavior
■ Challenges with Transitioning
■ Explosive Behaviors in School or
■ Difficulty Following Directions
■ Discrepancy between Verbal and
Performance Scores
Home
■ Social Skills Difficulties
■ Depression
In Elementary School intellectual abilities can often disguise
these symptoms. In middle and high school these challenges
often become a larger issue.
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Creating a Supportive Learning
Environment
■ Teacher is tolerant, does not react with anger or annoyance
■ Models active ignoring of tics
■ Creatively works around tics which might affect the privacy or
safety of others (touching others)
■ Opportunities for short breaks, avoid needless attention
leaving
■ Child in class with and seated near supportive friends
■ Private place to relax
■ Private space for testing
■ Eliminate presentations (allow to record instead)
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Interventions That Are Not Helpful
Reminders –
tics are
suggestible
Punishment
Being told
they are
annoying
Joking about
them
Asking them
to leave the
classroom
Isolation
(other than
for testing)
Selective
acceptance
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Special Education Services
IEP or 504: What is the difference?
■ To be eligible for an IEP (Individualized Education Program), child must
require special education services. That is, some service the school
provides. Usually when LD is present.
■ 504 provides accommodations (seating, extended time, breaks) to
compensate for impact of disability.
■ Under either 504 or IEP category of OHI (Other Health Impairment) may
be used - Tourette Syndrome has been listed as a disability under that
category by the U.S. Department of Education.
■ Achieving passing, or even good grades, does not necessarily mean
that a child does not qualify to receive either a 504 Plan or an IEP.
■ Though not always necessary, it is best to have one, especially going
into middle school/high school.
■ “Only need it for the bad ones”
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What You See is Not Always What
You Get
When child seems to be doing well and may not be using accommodations,
need to understand it is an enormous stress to sustain that.
Appearance of doing fine isn’t always accurate.
Parent observe that when child gets home, they are finished for the day.
Often unable to approach homework
Teachers may never see how severe the tics are or even notice them
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Peer Education
To Tell or Not to Tell
■ Bullying
■ School programs - sometimes helpful (in small school),
sometimes calls more unwanted attention to student
(cannot control outcome)
■ Alternative - address child’s parent or ask teacher to
help classmates understand tics in effort to reduce
ridicule and teasing
■ Share with close friends
■ Teach them how to handle questions from peers
■ Teachers do not always understand even though they
say they do
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Common Accommodations for TS
■ Private place or “refuge” child ■ Providing class notes and
can go to tic freely, have a
break
■ Frequent breaks
■ Shortened assignments
■ Preferential seating (with
friend, certain location)
■ Prior notification if there is a
substitute
outlines/student notetaker
■ Allow typing rather than
handwriting
■ Allow writing answers on test
booklets
■ Do math problems on graph
paper to line problems up
easier
■ Testing in a separate location ■ Alternative lunch eating place
■ Extended time for
tests/assignments
with friend for a break
■ Excusing some assignments,
particularly during flare ups
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Academic Load
■ Intellectual capability often at odds with
what is realistic
■ Elementary – ask for packets, projects
ahead of time, use weekends
■ Middle/High School - add study hall
period
■
Lighten academic load (summer class)
■
High School students use Community College
(less class time, less busy work, shortens HS day
as well)
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Standardized Testing Accommodations
ACT/SAT
■ Small group
■ Extended time
■ Frequent breaks
■ Ability to write directly in test booklet
■ Testing over multiple days, individually
■ Must apply far in advance
■ Need supporting materials from providers
■ SAT accommodations covers AP exams
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Severe Flare Ups
■ Shorter day
■ Complete break from school
■
Catching it before it gets severe
■ Medication trial
■ Home hospital school
■ Use of Skype for remote learning
■
Child can continue to be part of the classroom
■
Can turn on and off sound allowing for participation in classroom
discussions
■
Rare due to cost of equipment, privacy laws, lack of flexibility
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College Student and TS
Student
disability
services
Self
advocacy
Reduced
class load
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Private
dorm room
Priority
registration
Importance of Self Advocacy
■ Understanding TS
■ Communication with teachers
■ Introductory Emails
■
Be specific about what is helpful
■
Keep informed of new tics or flare ups
■ Education of others (coaches, friends,
employer)
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Dr. Lori Rappaport
San Diego ADHD Center for Success
appointments@growingupgreat.com
(858) 481-2188
www.sandiegoADHDcenter.com
www.growingupgreat.com