Living with Tourette Syndrome (TS) and Attention Deficit Hyperactive Disorder (ADHD)

1. Living with Tourette Syndrome (TS) and Attention Deficit Hyperactive Disorder (ADHD) • Living with TS and ADHD is sometimes very hard because people make fun of you and don’t understand your disability. My name is Mark Ostmeyer and I have TS and ADHD. Over the last year I have begun to teach others about my disability and what it’s like to live with TS.

2. What is TS • Tourette Syndrome is a neurological disorder which becomes evident in early childhood or adolescence (generally between the ages of 2 and 15). TS is defined by multiple motor and vocal tics lasting for more than a year. All students with TS will have exhibited involuntary multiple motor tics.

3. Tourette symptoms may come and go. At times they may appear very intense and at other times absent. Tics can also change over time. For example a student who sniffs and coughs this year may blink and shrug shoulders next year. • Tics are involuntary yet some students can suppress symptoms for a short time. However the tics will often come out later and with greater intensity.

4. What causes TS? • The causes of Tourette Syndrome are not clearly understood. We know it is a neurobiological disorder that may result from a malfunction of one or more neurotransmitter systems in the brain. There is also a genetic component. Individuals with TS have about a 50% chance of passing the gene on to their children.

5. Most common motor tics include: *eye blinking *squinting *nose-twitching *lip smacking *tongue-thrusting *shoulder shrugging *arm extending…etc. Most common vocal tics include: *throat clearing *grunting *spitting *swearing *stammering *hissing *shouting *barking *moaning…etc. Common Tics

6. Individuals with TS often suffer from any number of behavioral conditions: *Obsessive Compulsive Disorders or traits *Hyperactivity *Attention Deficit Disorders *Learning Disabilities *Self-Injury *Antisocial Behavior *Inappropriate Sexual Behavior * Anger Outburst *Discipline Problems *Sleep Problems Co morbidities/co-occurring conditions are generally more bothersome than the tics in TS. When quality of life ratings are conducted most rate the behavioral aspects as being more detrimental Other behavioral patterns or Co-occurring conditions

7. I can’t help having tics. It feels like--- “if I don’t do it something will happen.” It gets annoying when others tell me to stop sniffing or clearing my throat because when they mention it--it makes it worse and I tic more.

8. For me it’s organization. I have to have everything organized. I have to do it because it will drive me nuts if I stare at it to long. I also need things I make to look the same on all sides. If I put a stripe on one side of a model---I have to put it on the other side.

9. I get really hyper and people don’t want to be around me.

10. My tic is throat clearing and I get really tired of it but I know it will get better with age. It is pretty hard having Tourette’s because there are a lot of people that don’t understand it--Like in band class, my teacher should know what people say to me and she doesn’t do anything about it. They continue to tell me to be quiet and that I can Stop making noises. I think the class and my teacher need to be taught about disabilities.

11. School Related Strategies for Students with TS Students with TS face many challenges within the school environment. Tics, social stigma, peer reactions, behaviors related to co-occurring conditions and learning difficulties can make education environments a very unpleasant experience. Teacher response to these conditions can make a critical difference!!!!!

12. Academic Strategies Modify test-taking to private areas to allow students opportunities to focus on assignments rather than suppress tics. Accommodate visual motor integration issues. Disproportionately high numbers of students with TS have some type of Learning Disability. Wave or extend time on tests and assignments. Reduce length of assignments. Provide graph paper to help line up math problems. Do not penalize for poor handwriting. Use oral reporting instead of written when possible. Do not penalize for spelling errors--encourage spell check. Provide class notes rather than have students copy from the board or overhead. Use books on tape to reduce reading anxieties. Allow mechanical pencils to avoid sharpened pencil obsessions. Provide transition time between activities. Teach organizational skills.

13. Behavioral Strategies Remember tics occur involuntarily. Try not to react with anger or annoyance. Provide students with breaks often and out of the room to reduce anxiety or to allow tics to come out. Program for sensory defensiveness. Help students to learn to remove themselves from a situation before it escalates out of control. Impulse control issues will best be addressed through redirection and education for the student and others. Teach redirection to reduce anger control and explosive episodes.

14. Social Strategies • Bulling cannot be ignored!! Education of peers will reduce fear and ignorance surrounding TS. • Social skill training and coping strategies should be specifically taught to deal with behavior issue and peer teasing. • Provide verbal mediation for non-verbal experiences. • Remember students with TS may have many co-occurring behaviors that are neurologically based.

15. Additional Facts About Tourette Syndrome An estimated 100,000 Americans have full blown TS. And more than 1 million people are suspected to have milder forms of the condition. Coprolalia-Saying socially inappropriate words, often portrayed in the media as a common TS behavior -- Is in truth fairly rare. Less than 15% of individuals with TS exhibit coprolalia behaviors.