Tourette’s in the SchoolsDR. LORI RAPPAPORTSAN DIEGO ADHD CENTER FOR SUCCESS

Helping Families Navigate the System

2The 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

3Common Co-Occuring Conditions

4School 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)

5Knowledge 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

6WHAT 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

7Common Educational Challenges■ Handwriting Issues/Dysgraphia■ Difficulty Completing Homework■ Disorganization■ Perfectionism■ Difficulty Attending■ Challenges with Transitioning■ Difficulty Following Directions■ Discrepancy between Verbal and

Performance Scores

■ Sensory Issues■ Stress and Anxiety■ Impulsivity ■ Disinhibition■ Oppositional Behavior■ Explosive Behaviors in School or

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.

8Creating 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)

9Interventions That Are Not HelpfulReminders –

tics are suggestible

Punishment

Being told they are annoying

Joking about them

10Special Education ServicesIEP 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”

11What 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

12Peer EducationTo 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

13Common Accommodations for TS■ Private place or “refuge” child

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■ Testing in a separate location■ Extended time for

tests/assignments

■ Providing class notes and 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

■ Alternative lunch eating place with friend for a break

■ Excusing some assignments, particularly during flare ups

14Academic 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)

15Standardized Testing Accommodations

■ 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

ACT/SAT

16Severe 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

17College Student and TSStudent disability services

Self advocacy

Private dorm room

Reduced class load

18Importance 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)

19

appointments@growingupgreat.com(858) 481-2188

www.sandiegoADHDcenter.comwww.growingupgreat.com

Dr. Lori RappaportSan Diego ADHD Center for Success