My mission to change our schools must include education about the disorders that cause pain, bullying, and isolation for a child at school. After all, it is usually something different about a child that causes a bully to target them in the first place, and many times that something is a disorder. One such disorder is Tourette Syndrome. When speaking of Tourette Syndrome, the generalization is that TS is the blurting out of words (cursing), and noises, at any given time. Also, jerking movements, which are just as sporadic. Digging a little deeper, most would probably remember a teenager if we were to think of the classic representation of somebody with Tourette Syndrome. However, Tourette Syndrome is so much more than noises, words or movements somebody can’t control. Tourette Syndrome is a neurological disorder with many manifestations. A current list of symptoms I recently printed was four pages long. This was only a list of tics and did not include another aspect of Tourette Syndrome, OCD. OCD can be debilitating in a child, cause great challenges for the child and the child's family, and is usually misunderstood by most people. Here is my brief description of the neurological disorder Tourette Syndrome.
TS was first described by Gilles de la Tourette in 1885, yet was not well understood in the medical community until close to 1985, when it started getting more attention. The disorder is diagnosed in childhood. My son started having symptoms at age three, after a diagnosis of strep throat (see P.A.N.D.A.S). There are comorbid disorders that are seen with Tourette Syndrome as well, including OCD, ADHD, impulsivity, and anger outbursts. An example of an anger outburst in a child with TS would be a child getting more upset than usual when you tell them no. It can be over something small. These children may cry more than somebody without the disorder, or have a tantrum over something that isn’t very important at all, like saying no cookies before dinner, or it’s time for bed. OCD in children is very stressful and not understood by the general public. Typically, people tend to think more of the compulsion part of OCD, such as somebody washing their hands repeatedly. This type of compulsion is only half of what OCD is for a child. The child with OCD will usually have images and/or thoughts, some horrific that come to mind that are very invasive to their day, won’t go away, and may be as disturbing as seeing a graphic image of a loved one in a car accident with blood, their mind may tell them they are responsible for this disaster, or that they may hurt a love one. Children with OCD are not violent. To the contrary, they are very sweet, compassionate, and caring, and would never do anything to hurt anybody or anything, and this is why the thought of such things is so disturbing to them, and why OCD can be so devastating. All children may have these feelings, thoughts, or images, yet in a child without the disorder, the thoughts are fleeting and the child goes on with their day. In children with OCD, the experience is sometimes called "brain sticking", the thoughts won't leave, and continue to invade them during their normal routines. Typically then, the child with OCD will carry out a comforting ritual that makes them somehow feel as long as they do this particular thing, it may keep the bad thing from happening. Examples of compulsions would be washing their hands many times, checking locks on doors, collecting things, repetitively counting something, or sorting it, things like picking at their skin.
The reason most people think of a teenager when they remember somebody with Tourette Syndrome is because TS gets progressively worse and the severity usually peaks during early teenage years between the ages of 12-15. In early adulthood however, most people see a decrease in the number of tics, and can live a normal life. The symptoms of Tourette’s wax and wane, meaning they come and go in terms of severity, but they are always there to a degree, even when a child sleeps. The waxing and waning can be very difficult because teachers, and even relatives may think the child is fine and then when an exacerbation of symptoms occur, the teacher or relative may think the child is responsible for these symptoms. In addition to the teasing and bullying children with this disorder endure by peers, the sad truth is that sometimes teachers/family who just don’t understand, get frustrated and treat these children as if they are a nuisance, a problem child, and insubordinate. They are often punished at school or humiliated for symptoms of their disorder that that cannot possibly control. People think of tics as swearing, when in reality only a small number of people with TS have this type of tic. However, tics may include hiccups, hopping, lip smacking, grunting and even skipping, smelling, and snapping...again, the list is essentially endless. It is almost impossible to decipher between a behavior and symptoms of TS. Therefore, children should not be punished but treated respectfully such as a child with any other disability would be and positive interventions should be used along with self-esteem builders. Stress and anxiety only make symptoms worse, so the scolded child, will only repeat the tic more! Tourette Syndrome children are very smart, have completely normal intelligence, and are often deep thinkers. They are fully aware of the humiliation their disorder causes. They may have academic challenges, many times because tics take so much energy and suppressing them takes so much concentration, they are unable to concentrate on anything else. Also, the physical movement of the tics can affect things like reading and writing. Tics cannot be controlled. They may be able to be suppressed for a short time, but overall, this is very difficult, takes all of a child’s concentration, to the point that they are unable to concentrate on anything else, and ultimately the tic will have to be released and like stress, suppressing it will make it stronger, louder, more active.
Tourette Syndrome is a very isolating disorder. At a very important time of a child’s life, early teens, TS gets progresses and suddenly it’s revealed to everybody, everywhere. It affects a child’s life at home, school, the playground, church, restaurants, and stores. It may keep them from going to movies, libraries, proms, dates, or getting a summer job. They may withdraw from society. It affects every aspect of a child’s life. A child with TS needs a team of professionals, an advocate, the support of family, and they really need...friends.
Author: Jeannine Celestine
Thank you for joining me for this brief synopsis of Tourette Syndrome. Contact me at Jordan's Advocate.com to learn more.