Mrs. Tanner sighs. She is preparing for a parent-teacher conference with Owen's parents. Owen is sometimes difficult to have in class. He interrupts, makes noises that distract his classmates, is often out of his seat, and touches other students and their belongings. Even though Mrs. Tanner is an experienced teacher with an excellent track record of helping students with a variety of special needs, none of the strategies she has tried are working with Owen. Yesterday, Mrs. Tanner had to redirect Owen (usually by telling him to STOP! whatever he was doing that annoyed others) 35 times in the hour of instruction before lunch! That simply isn't fair to the other students. What is she going to tell his parents?
Luckily for Mrs. Tanner, Owen's parents are coming to share information that could help her improve Owen's school experience. Owen has just been diagnosed with Tourette syndrome. How can knowing this diagnosis help?
Know the Facts
Tourette syndrome is a neurodevelopmental disorder believed to be genetic. The most visible symptom is the presence of tics. These involuntary movements or sounds can range from simple (sniffing, throat clearing, blinking) to complex (words or phrases, hopping, body contortions). They may be frequent for a few weeks, then fade away almost completely before reappearing. Some tics may seem consistent, whereas others only stay for a limited time and are replaced by new ones.
Children usually develop Tourette syndrome between the ages of 5 and 9, although there are cases in the early childhood population and some children do not manifest symptoms until adolescence. For about two-thirds of children with the syndrome, symptoms will resolve to a point that they don't interfere with daily living by early adulthood. About one-third will still have significant symptoms as adults. Unfortunately, things get worse before they get better, and symptoms are generally most prominent from the ages of 10 to 15.
Experts currently believe that Tourette syndrome appears in at least 3 in every 1,000 school-age children. It is approximately three times as common in boys as in girls. That means that there are few U.S. schools that don't contain at least one student with Tourette syndrome, and all schools are statistically likely to have at least one student with the syndrome in the next three years.<FOOTNOTE><NO>1</NO>National Center on Birth Defects and Developmental Disabilities. (2012). Data and statistics. Atlanta, GA: Centers for Disease Control and Prevention. Retrieved from www.cdc.gov/ncbddd/tourette/data.html.</FOOTNOTE>
If this disorder is so prevalent, why aren't educators better informed about it? In part, it is because Tourette syndrome carries a stigma, and many families who have received a diagnosis don't talk about it with schools. In addition, because the symptoms are always changing, it is very difficult to diagnose, and many children wait years to get a proper diagnosis, if they ever do.
Change Your Perspective
There is no doubt that Owen's behaviors present a challenge for Mrs. Tanner, but let's look at school through Owen's eyes. Last summer, Owen's body began a war with his mind. Different parts of his body now mutiny and move without his consent. Owen has always liked school, but reading has become a challenge. He doesn't have trouble decoding or comprehending, but he blinks frequently, and sometimes his eyes roll up and to the right. Because he must frequently search for his place on the page, reading takes much longer than it should. He is terrified of being asked to read aloud. He is a good reader, but he gets nervous when people watch him, and when he gets nervous, his tics appear more often.
Owen worries about what will happen if he starts to make one of his sounds in front of everybody, especially if it's one of the really weird ones, like barking, which so far he has managed not to do at school. Owen's therapist has helped him learn to recognize the premonitory urge, a feeling like an itch or a buzzing that happens right before a tic. Sometimes he can keep a tic from happening if he concentrates until that urge passes. Other times, he cannot control it, so he will try to act silly to play off what his body does. It's better to have kids laugh than stare.
The worst tic right now is his touching tic. He can't stop this one. When Owen is near people, he needs to reach out and touch them. Sometimes he needs to touch things lying on a table or, worst of all, on the ground. Because being nervous makes the tics worse, taking tests or being told to stop just makes it harder to prevent tics. Sometimes Owen is working so hard at stopping his tics that he can't concentrate on anything else. By the time he gets home each day, he is worn out from the battle with his own body.
How Not to Intervene
It's vital to view students with Tourette syndrome as children with a neurologic difference. If we view the child as the class clown, someone lacking social skills, or a poor reader, then our responses are going to be inconsistent with the truth of the situation and are not going to be helpful.
Because tics are involuntary, they do not respond to typical behavior modification plans, such as setting up a reward or consequence system or using positive behavioral supports around engaging or not engaging in a tic. Owen doesn't need to hear that "in this class, when we walk to the front of the room, we keep our arms at our sides." He knows what he is supposed to do, and if he could do it, he would. Some children with Tourette syndrome are able to suppress some tics, but this suppression comes at the price of sustained attention to schoolwork, which can jeopardize these students' education.
Students with Tourette syndrome qualify for an individualized education program (IEP), and some may require IEPs to have full access to an appropriate education. However, it is never appropriate to write an IEP or other goal around the elimination or reduction of tics. Some children work with specially trained psychologists or therapists to reduce tic frequency. This therapy requires significant work on the part of the student and substantial training on the part of the therapist. It's not within the purview of the school.
It's also inappropriate to write a goal around the number of prompts required to comply with a directive. Instead, we should assume that the child with Tourette syndrome intends to comply, as soon as he or she can. Often, these children have obsessive thoughts or may be engaging in tics that aren't easily visible, such as tightening their stomach muscles or tapping their fingers in a certain pattern. Once the child has dealt with the intrusive thought or tic, he or she can follow the teacher's direction.
The most hated word for a child with Tourette syndrome is stop. They hear it every day from classmates, teachers, parents, and siblings. They would love to stop, if only they could. Telling the child to stop draws attention to the tic, and talking or thinking about tics makes them appear more often. It also increases the child's anxiety level, and anxiety (along with hunger, thirst, and lack of sleep) can increase tic frequency. Being overly solicitous or overprotective is no better, for the same reasons.
What You Can Do
Purposefully ignore tics. The only appropriate response to a tic is to ignore it, but that is easier said than done! Keep in mind that a tic is involuntary. It was not done to elicit a response and does not require one. Ignoring tics means more than just not saying, "Stop that!" You must also control your body language and facial expressions. You, as the teacher in the room, are modeling appropriate responses for the other students. You must send the message that differences among students are not only accepted, but also expected.
Arrange the room. Usually when we hear about preferential seating, we think of the front of the room, directly in front of the teacher. However, the best seat for a student with Tourette syndrome is a spot where no one is behind him or her. This may be the back or side of the classroom, depending on how your seats are arranged. If your desks are in pods, try giving the student the fifth seat, at a 90-degree angle to the pod. This gives the student more personal space with no one beside or directly across from him or her.
Make accommodations you can live with. If you aren't comfortable with a student wandering around your classroom, then look for other ways to allow for the movement the student requires. Can you allow the student to stand or to move freely within a constricted space, such as along the back of the classroom? Often, teachers agree to let the child leave the room, but many students will never take advantage of this accommodation because they don't want to miss class or explain to other students where they are going. Accommodations have to work for both you and the student.
Increase wait time; decrease prompts. Sometimes it takes a student with Tourette syndrome a while to work through the cognitive interference and respond to a question or a prompt. If a student is having difficulty responding in class, give him or her time. As you wait, keep your focus on the student. Restate his or her point, if necessary, for the rest of the class. This practice communicates to all that the student's contribution is important. If the student has difficulty initiating actions, try writing page numbers or other short reminders on sticky notes and putting them in front of the student. Then you can walk away knowing that the student has a readymade prompt already there when he or she is ready to act. This will decrease the student's anxiety and your frustration.
Be open with families. Some Tourette syndrome symptoms are socially inappropriate and difficult to manage. You may need to problem solve with the student and parents to find a way around the difficulty. For example, if the child's tics are disrupting the learning of other students, you may need to rethink seating arrangements or find an alternate place for the student to complete tests that require silence. This separation is sometimes in the best interest of all students, but it is important that isolation not be the default position for dealing with tics.
Because symptoms wax and wane, you may see tics at school before they appear at home. In addition, many children exhibit tics less at school than at home, so if you see an increase of symptoms at school, you should pass that information on to the family so that they can follow up with the child's physician or therapist.
The Power of Knowledge
The Tourette Syndrome Association has wonderful materials for educators on its website that will help you better understand this disorder and how to make school a welcoming place for students with Tourette syndrome.
Besides educating yourself, it's important also to share what you've learned. You may be the only person the family has told about this diagnosis, but you are not the only adult who interacts with the child at school. Ask permission from the family to share information with the gym or art teacher, counselor, playground and lunch monitors, or other adults in the school. Encourage others to see the child's strengths over his or her challenges.
Education about Tourette syndrome should not be confined to adults. I firmly believe that other students should be educated about what Tourette syndrome is and how it affects their classmate. The family and the student would need to consent to any formal education sessions, but I can usually make a convincing case for why such education is valuable. Children cannot be accountable for what they don't understand, and education can be a valuable way to prevent teasing or to encourage students to tune out distracting behaviors. It's amazing how much children can learn to ignore when they understand the tic is not deliberate. When we expand our definition of "normal" behavior, students follow our lead. If they don't, the best response is to intervene just as you would in any other teasing situation.
The most important thing to keep in mind when working with students with Tourette syndrome is that the behaviors you are seeing are symptoms of a neurologic condition. If you view the child as having a problem rather than being a problem, you are more likely to arrive at solutions that make your classroom a successful learning environment for all students.