1 Working with Children with Tourette Syndrome
2 Pennsylvania Tourette Syndrome Alliance, Inc.P.O. Box 148 McSherrystown, PA 17344
3 Login & Password
4 Education & Tourette SyndromeComplex Doesn’t effect intelligence Requires Accommodations 504 Plan IEP GIEP
5 What Is Tourette Syndrome?Lifelong neurological disorder characterized by tics Chemical imbalance of the brain Gene SLITRK1 on Chromosome 13 - Genetic link Family history - 60% No medical test No Cure
6 Tourette Syndrome AssociationMovie Moment! 2005 HBO Documentary done in conjunction with the Tourette Syndrome Association
9 Undesired side effects of medications:Weight gain Fatigue Dry mouth results in frequent trips to the bathroom Muscular rigidity Restlessness Social withdrawal Depression
10 Diagnostic Criteria for Tourette Disorder/SyndromeBoth multiple motor tics and one or more vocal tics present at some time during the illness, although not necessarily concurrently. Tics may wax and wane in frequency but have persisted for more than 1 year since first tic onset. Onset before the age of 18 Not Due to: ~ direct physiological effects of a substance (e.g. cocaine) ~ another medical condition (e.g. Huntington’s disease or post-viral encephalitis)
11 Motor Tic Examples: Simple Motor Tics: Complex Motor Tics:Shaking head, shrugging, blinking, snapping fingers, tapping toes, wiggling a toe, or facial twitches Complex Motor Tics: Jumping, touching other people or things, dragging a foot, licking, twirling, multiple tics in a sequence
12 Vocal Tic Examples: Simple Vocal Tics: Complex Vocal Tics:Animal sounds, forced speech, stuttering, mumbling, a high pitched or hoarse voice, volume fluctuation, “baby talk,” talking to self in multiple characters Humming, snorting, throat clearing, sniffing, tongue clicking, coughing, grunting, huffing, puffing expirations or sucking inspirations, or belching
13 Other Specific Motor and Vocal Tics …Coprolalia Socially inappropriate words or phrases. Yelling “fire” in a store, swearing or racial slurs. Copropraxia Inappropriate touching or gestures. Touching hot objects, middle finger, touching self or others. Echolalia Echoing or repeating another person’s words. Palilalia Rapidly repeating own words. Echopraxia Echoing another person’s actions. Only about 10%-15% of people with TS experience coprolalia!
14 Unseen Mental Tics Have you ever had a song “stuck” in your head? Tics can sometimes be obsessive thoughts that won’t go away! Mental Tics can be pleasant or scary! Mental Tics could cause emotions to change quickly! Remember: a person with TS can’t always control it!!!
15 Tics 45 Wax and Wane Can be Ritualistic Can Seem Purposefulsymptoms can disappear or present with no forewarning Can be Ritualistic Can Seem Purposeful Self-harming Tics picking off toe nails, punching the head or stomach, stretching muscles until they tear, pulling out eyelashes and eyebrows. Current tics Not all swearing is coprolalia
16 Tics increase as anxiety and stress build!TICS GONE WILD Tics increase as anxiety and stress build! Timed Tests Holidays Changes in environment/transitions in class When the current situation requires minimal noise Special Events (trips, visitors, etc.) Changes in routine (substitutes, assemblies, field trips, early dismissals, etc.) Puberty
17 NEVER TELL A CHILD TO STOP TICCING!Tics are involuntary and the pressure to stop ticcing causes unnecessary stress and anxiety!
18 TIC TIME!
19 General Accommodations for Tics …Acceptance ~ first and most important accommodation! Common Sense Not complex or detailed modifications Easy to apply Subtle ~ in the child’s daily life Be creative ~ think “outside the box” Ignore tics ~ not the child. Tics ~ harmful or socially inappropriate… Decrease ~ stress and anxiety… Do not put undue pressure on the child!
20 Tourette Syndrome rarely travels alone.Associated Disorders Tourette Syndrome rarely travels alone. The most common: Neurological Shut Downs Dysgraphia And a Lot More! ADD/ADHD - 75% OCD – 60%
23 Sensory sensitivity Hyper or HypoVision Unable to screen visual information. May become overwhelmed with a lot of environmental stimuli, such as bright lights, or fluorescent “blinking” lights Movement Take risk to supplement the lack of sensation Avoid situations where their feet are not firmly planted on the ground Sensitive students can be highly distractible and tend to “shut down” because their world is too overwhelming. They also react with a “fight or flight” response.
24 Perception DifficultiesBlack & white thinking No grey areas They just don’t “get it!” Followers Can be talked into mischief Difficulty reading facial expressions and tone of voice Not able to understand what others are feeling Don’t know how to react appropriately
25 Executive Dysfunction/ Executive Function DisorderProblems with: Organization Setting and achieving goals Starting tasks and projects Adapting to change / transitioning Common discipline measures produce little change in behavior!
26 Social Skills deficitsMaturity ~ can be 2 to 3 years behind Social Cues ~ don’t recognize Perception Problems No mental “brakes” ~ don’t hold back thoughts Difficulty with empathizing Need Training!
27 Sleep Disorders Require more sleep time Ticcing at nightADD/ADHD/OCD- quiet mind to sleep Narcolepsy - Sleep at “the drop of a hat” Side effect of medications
28 RAGE Attacks ONSET DURING AN EPISODE AFTER A RAGE ATTACK- sudden and unpredictable Degree of anger and aggression - grossly out of proportion to the provocation DURING AN EPISODE - the person feels unable to resist or control his/her anger Outburst are not typical - of the person’s usual personality AFTER A RAGE ATTACK - individual may not have any recollection of what occurred during the rage - may view other people as overreacting Often will be remorseful May be extremely tired
29 Avoiding an ESCALATION of SymptomsRemain Calm Speak in a non-confrontational manner Never tell a person to STOP ticcing! Be aware! People’s reactions to tics or behaviors will increase the individuals level of stress and anxiety Have a “Safe Haven” established! Be Creative! Simple accommodations Look for ways to reduce Stress and Anxiety for the individual Approaching an person with TS in a confrontational manner will only cause them to react back in the same way. Educating the other people around them is very important to reduce stress, anxiety and an possible bullying and teasing that may occur
30 Discipline Usual forms of punishment don’t work!Positive Behavior Plans Clear and understandable Consistent & Achievable Cumulative points List of rewards that give the child a few choices Never lose what is already earned Do not start over every week! Learning disabilities apply when learning about their behavior Auditory Processing Problems Go through the steps of their behavior Reflection Log**
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32 No two TS cases are alike!combinations No two TS cases are alike! 1 Tourette Syndrome 2 ADD or ADHD 3 OCD 4 Anxiety- Phobias 5 Social Skills 6 EFD 7 Dysgraphia 8 Sleep Disorders 9 Perception 10 Sensory Sensitive 11 Rage Attacks 12 Mood Disorders Remember… you are not an expert just because you’ve had past students with TS!
33 After School Blow-Ups & AccommodationsEXPLOSIONS After School Blow-Ups & Accommodations Struggling to hold in behaviors all day and releases or “explodes” at home Grade on quality, not quantity Frequent movement breaks Decrease amount of homework Mentally exhausted and has been neurologically overloaded Instruct parents to allow student to relax and RELEASE before trying to do homework Homework that may take 30 minutes lasts for hours for the TS student
34 A parent’s frustrationNOTE: A parent’s frustration may be more with their child’s disability than with the school!
36 …the child needs to know you understand!The Sixth Sense! Critical! Build a relationship! …the child needs to know you understand!
37 You Make the Difference!The PA Tourette Syndrome Alliance is a non-profit organization that promotes awareness and acceptance, provides education, and assists families, schools and communities while advocating for individuals with TS. Volunteer! We Need YOU! Speakers Bureau Volunteer Consultant Youth Advocate Camp Volunteer Committee Member Information Outreach Support Group Leader
38 Any Questions? ? ? ? ? ? ?
39 return them at this time.Please fill in your surveys and return them at this time. Thank You!
40 For More Information on Tourette Syndrome and its Associated Conditions:Excellent Book! Tourette Syndrome "Plus" © Copyright Leslie E. Packer, PhD. Copyright © Danya International, Inc Pa Tourette Syndrome Alliance, Inc.