Mary Anderson, Page 0

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1 Mary Anderson, Page 0

2 Copyright and Disclaimer Notice This publication is protected under the US Copyright Act of 1976 and all other applicable international, federal, state and local laws, and all rights are reserved, including resale rights: you are not allowed to give or sell this Guide to anyone else. If you received this publication from anyone other than you've received a pirated copy. Please contact us via e- mail at and notify us of the situation. Please note that much of this publication is based on personal experience and anecdotal evidence. Although the author and publisher have made every reasonable attempt to achieve complete accuracy of the content in this Guide, they assume no responsibility for errors or omissions. Also, you should use this information as you see fit, and at your own risk. Your particular situation may not be exactly suited to the examples illustrated here; in fact, it's likely that they won't be the same, and you should adjust your use of the information and recommendations accordingly. Any trademarks, service marks, product names or named features are assumed to be the property of their respective owners, and are used only for reference. There is no implied endorsement if we use one of these terms. Finally, nothing in this Guide is intended to replace common sense, legal, medical or other professional advice, and is meant to inform the reader. 1 Mary Anderson

3 Table of Contents Chapter 1: What is Tourette s Syndrome?...3 Introduction...3 The History of Tourette s Syndrome...4 Chapter 2: What are the Symptoms of Tourette s Syndrome?...5 Chapter 3: Who is Affected?...7 Chapter 4: Can the Symptoms of Tourette s Syndrome Be Controlled?...8 Chapter 5: What Causes Tourette s Syndrome?...9 Chapter 6: How Does Tourette s Affect Children?...11 Chapter 7: How is Tourette s Syndrome Diagnosed?...13 Chapter 8: How is Tourette s Syndrome Treated in Children?. 14 Determine the best educational setting for a child with Tourette s...15 Accommodate for writing problems...17 Accommodate for problems relating to language...19 Chapter 9: Recommendations for Attention Problems...20 Chapter 10: Tourette s Syndrome Management...22 Chapter 11: Famous People with TS...24 Concluding Thoughts Mary Anderson

4 Chapter 1: What is Tourette s Syndrome? Introduction You may have heard about Tourette s Syndrome from a number of places movies or television is a common source for most people in their exposure to Tourette s. You will often see young children, and sometimes adults, with this disorder portrayed in movies or on television, spouting obscenities in a fashion that may seem utterly baffling to most people; it is particularly baffling to those who are complete uneducated about the actual Syndrome, what it does, and why it does it. If you are dealing with children who have this Syndrome, your need for information on Tourette s becomes increasingly urgent. What is this Syndrome? What is causing the child to have these involuntary behavior actions? How are you to deal with it? Are there any treatment options you can seek? How are you, as a parent, caregiver, or close family friend, to deal with the child? What can and can t you do with this child? How will it affect your ability to go out in public with this child? Do all Tourette s afflicted children act the same way? Do they all have the same tics? As a parent with a child who has just recently shown signs of Tourette s, you are undoubtedly feeling confused, frustrated, ignorant, and, let s be honest, a little afraid. It s not that you are afraid of your child, but you are definitely afraid for your child in his or her future. Calm down, take a deep breathe, and let this new information sinks in. Believe me, I have made my share of mistakes with my son in regards to his Tourette s, but through trials and tribulations we found the answers we needed to help Kevin. Hopefully this guide will lead you on the right track and help you and your family adjust to life with Tourette s. So, let s answer the most important question first What is Tourette s? Tourette s Syndrome has been recognized to be a neurological disorder. Repetitive involuntary movements and/or vocalizations known as tics characterize this particular neurological disorder, which is primarily what differentiates it from other neurological disorders. These tics are very prominent in children affected by Tourette s Syndrome, specifically those that are still in their prepubescent years. 3 Mary Anderson

5 In nearly all cases of Tourette s Syndrome, the first symptoms are noticed in early childhood. The majority of all people afflicted with Tourette s Syndrome began to experience early symptoms between the ages of seven and ten. Tourette s Syndrome is a disorder that affects all ethnic groups, yet males are affected three to four times more often than females. Throughout the United States it is estimated that there are roughly 200,000 Americans that are suffering from a severe version of the disorder. It is also estimated that nearly 1 in 100 US citizens have some form of mild or less complex symptom, in the form of a Tourette s Syndrome, often acting as a minor tic or chronic movement. The majority of people who are or have been afflicted with Tourette s Syndrome develop minor tics and or unconscious movement, and lose these symptoms during their late teens. The History of Tourette s Syndrome Tourette s Syndrome is also known as Tourette Syndrome, Tourette's disorder, or simply Tourette. Tourette s Syndrome is believed to be an inherited neurological disorder that becomes active during the early stages of childhood. The exact causes of Tourette's Syndrome remain unknown, but there is a great amount of medical research currently being conducted to determine the causes. In 1825, the first case of TS was reported. A medical pamphlet described the Marquise de Dampierre, a noble woman whose symptoms included involuntary tics of many parts of her body and various vocalizations including coprolalia and echolalia. Later, Dr. Georges Gilles de la Tourette's, the French neurologist for whom the disorder is named, first described nine cases in Samuel Johnson, the lexicographer, and Andre Malraux, the French author, are among the famous people who are thought to have had TS. Tourette's syndrome has shifted from being a condition only recognized in its most severe and impairing forms, to being recognized as a condition which is often mild, and which may be associated with some advantages and disadvantages. There are many individuals with Tourette's, recognized in their fields, or for whom obsessive-compulsive tendencies associated with Tourette's may have helped fuel their success. An example of a person who used obsessive-compulsive traits to his advantage is Dr. Samuel Johnson, lexicographer, who had Tourette's 4 Mary Anderson

6 syndrome. Johnson wrote A Dictionary of the English Language in 1747, and was a prolific writer, poet, and critic. Chapter 2: What are the Symptoms of Tourette s Syndrome? Now that you have some more information about the initial studies and history of Tourette s, let s take a closer look at the Syndrome itself. Perhaps the most prominent and easily noticeable symptom of Tourette s lies in what is known as a tic. Tics are involuntary movements, speech, or other action that the person afflicted with the tic has no ability to control. There are two types of tics, as we currently understand them. One is a simple tic. The other is a complex tic. A simple tic is very similar to how it sounds. It is usually a tic of the body that is sudden, brief, and repetitive. These tics are, for the most part, just annoying for a person afflicted with the Syndrome. Your child may feel foolish when these tics occur because they will feel as if he or she has no control over one part of his or her body and cannot stop the movement or action at all. A very common simple tic is a blinking eye. The child s eye will blink suddenly, rapidly, and repetitively. It can be disruptive as he or she will have difficulty keeping focus while the eye is blinking so rapidly and it can be very distracting to someone watching the child. Other simple tics include involuntary facial expressions or twitches (cheeks and mouths are particularly susceptible), involuntary shoulder movement (such as a jerk at the shoulder socket over and over, a twinge in the muscles of the arm, shoulder, or forearm, etc), or an involuntary head movement (such as a sudden and repetitive jerk of the head to one side). A simple tic may also include vocalizations, but it is unlikely that, in these types of tics, the words will be understandable or coherent. For the most part, they are sudden and repetitive grunting noises or other sounds that emanate from the throat or nasal passages. It can also be a clucking of the tongue. 5 Mary Anderson

7 Complex tics are different altogether. They are definitely much more distinct. They involve a coordinated pattern of movements or sounds that involve many more muscles than a simple tic will use. A physical complex motor tic can involve a face grimace, but will include involuntary body movement as well, such as shoulders jerking or arms waving. A complex tic can also appear to have some type of purpose, such as brushing up against objects, bending, appearing to listen carefully, jumping, or twisting, but it is important to remember that these actions are involuntary. Almost all vocal tics are considered complex tics. Complex vocal tics can include words and/or phrases; these words or phrases can seem as though they are purposeful, but just as the physical tics are involuntary, it is important to remember that these verbal outbursts are completely involuntary. When viewing movies or television shows that have Tourette s, they are often displaying people who experience complex verbal tics in the form of obscenities. The most dramatic type of complex tic is a tic that involves motor movement that can result in self-harm. Many people suffering from Tourette s Syndrome can develop a complex tic where the symptoms involve physical motor tics such as punching one s self, tapping an object too hard repeatedly, banging the head against something, hitting the ground uncontrollably, picking at one s self involuntarily, or any other number of physical actions which could cause damage. These tics can often result in severe physical pain, which can in turn increase stress levels and increase the severity of the tics. That is why it is especially important, when dealing with children, to try not to increase their day-to-day stress levels. By maintaining regular low day-to-day stress levels, it is possible to reduce the severity of symptoms that is child suffering from Tourette s Syndrome episodes and involuntary actions. 6 Mary Anderson

8 Chapter 3: Who is Affected? I used to believe that Tourette s was a rare occurrence in children, but after doing some research, I found that it is more common than it was once thought to be. Throughout the United States it is estimated that there are roughly 200,000 Americans that are suffering from a severe version of the disorder. It is also estimated that nearly 1 in 100 US citizens have some form of mild or less complex symptom, in the form of a Tourette s Syndrome, often acting as a minor tic or chronic movement. The majority of people who are or have been afflicted with Tourette s Syndrome develop minor tics and/or unconscious movements. In nearly all cases of Tourette s Syndrome, the first symptoms are noticed in early childhood. The majority of all people afflicted with Tourette s Syndrome began to experience early symptoms between the ages of seven and ten. Tourette s Syndrome is a disorder that affects all ethnic groups, yet males are affected three to four times more often than females. 7 Mary Anderson

9 Chapter 4: Can the Symptoms of Tourette s Syndrome Be Controlled? The primary symptoms of Tourette s Syndrome, known as tics, are a problem in which either one or a series of muscles within the body moves involuntarily, often repeatedly and quickly. These tics can occur in any part of the body, but often take place in the face or hands. Many times a child suffering from Tourette s Syndrome will create sounds, which may sound like they are coming freely and voluntarily, but are actually involuntary. These verbal tics often manifest through throat clearing, grunting, or another such word-less noise and are referred to as a vocal tic. In some rare cases, these vocal tics can be severe and frequent and have serious adverse effects on a child's life. A great amount of research has been completed with people who suffer from Tourette s Syndrome on learning to control or suppress symptoms. The vast majority of people suffering from Tourette s Syndrome develop tics that are completely involuntary, although some people have developed methods to suppress, manage, or otherwise camouflage their tics in an effort to reduce the impact this disorder has on their lives. Often, the ability to suppress the symptoms of Tourette s Syndrome comes later in life, usually during a patient's late teens. However, it is not yet known if suppressing these symptoms is healthy; many people who have attempted to do so have developed a type of "build up" of stress, tension, and experience more severe tics. It is arguable whether or not to try and teach a child to suppress Tourette s Syndrome symptoms. It is also very important to remain calm when your child is experiencing any type of symptom as any action or outburst can increase their level of stress or could push them to internalize the stress or tension that they are trying to express. 8 Mary Anderson

10 Chapter 5: What Causes Tourette s Syndrome? The exact cause of Tourette s Syndrome is not known. Current medical research believes that the cause of Tourette s Syndrome has to do with abnormalities in specific brain regions. This includes abnormalities in the frontal lobes and cortex. It is believed that the abnormalities take place amongst the circuits that interconnect specific neurological regions, such as neurotransmitters. It is also believed, and supported by medical research, that Tourette s Syndrome is directly related to the amount of dopamine and serotonin being created within the mind. The complex presentation of Tourette s Syndrome leads many people at the medical research field to believe that the cause, as well as treatment options, will be equally complex. Many children who suffer from Tourette s Syndrome also experience other neurological behavioral problems. Often, children who suffer from Tourette s Syndrome will also be diagnosed with hyperactivity disorders such as ADHD, also known as Attention Deficit Hyperactivity Disorder. This disorder was recently discovered and is commonly treated with medication such as Ritalin. ADHD usually shows its head during early childhood, generally around elementary level school. The children will start having difficulty keeping focus or paying attention to information provided to them. Roughly 3% to 5% of all children have ADHD, which would constitute nearly 2 million children in the United States. The primary symptoms of ADHD are inattention, hyperactivity, and impulsivity all symptoms that will usually show themselves in children with Tourette s Syndrome. Children with Tourette s also often display signs of OCD (Obsessive- Compulsive Disorder). This is an anxiety disorder often characterized by recurring obsessions (or unwanted thoughts), and/or compulsive behavior (repetitive, uncontrollable behavior). People afflicted with this disorder might count the number of times they brush their teeth and require that they brush the same number of times each time. They are often cleaning, checking on things, washing their hands, or counting. They often develop daily ritual behaviors and adhere to them strictly or else their anxiety levels will rise sharply. Both OCD and ADHD behaviors are often shown in a person with Tourette s Syndrome. And no wonder! Several genetic studies have shown that OCD 9 Mary Anderson

11 and ADHD are genetically linked to the Tourette s Syndrome they have similar genetic structures, backgrounds, and effects. People with Tourette s will often demonstrate both OCD and ADHD characteristics. At the genetic level, it has also been determined that Tourette s Syndrome is an inherited disorder. Parents who have Tourette s (or had it when younger and grew out of it) will often have children with Tourette s. It is also more likely that if a relative has Tourette s, a child might have Tourette s. However, it is unlikely that a genetic disposition will results in a severe Tourette s Syndrome disorder. In the majority of cases Tourette s Syndrome is expressed through minor tics or as an obsessive-compulsive behavior. More than genetics, the sex of the person plays a larger role in their risk of being diagnosed with Tourette s Syndrome. It is far more likely for an at-risk male to develop Tourette s Syndrome than it is for an at-risk female. It is also far more likely that an at-risk female develops obsessive-compulsive symptoms than it is for an at-risk male. It is very important that a person who is suffering from Tourette s Syndrome has some type of genetic counseling so that they can better understand the potential hereditary problems and conditions that exist in the family. 10 Mary Anderson

12 Chapter 6: How Does Tourette s Affect Children? Children with Tourette s Syndrome usually have trouble with schoolwork such as reading, writing, and arithmetic. This is related to the neurological disorder that causes the Tourette s Syndrome, yet is often misdiagnosed as a hyperactivity disorder. Children suffering from Tourette s Syndrome often experience excessive compulsive symptoms; these can result in constant worrying, intrusive thoughts, and repetitive behaviors. As an example, someone affected with Tourette s Syndrome may repetitively wash their hands for fear of germs or compulsively count steps as a way to familiarize themselves with their surroundings. They may also have very specific ways in which they want things to be set up for them, ordered, or laid out on a table. In addition, they will have issues with changes to their schedules. This may manifest itself in an essential regular schedule each day where things occur at specific times (from when breakfast is served to when the child goes to bed). They may need to get dressed in the same order every day such as underwear, pants, socks, shoes, shirt, and then hat. They may need a plate to be set out with a fork and spoon on one side and a knife on the other, with their drink cup set on the right hand side. If your child is displaying this type of organizational behavior (directly related to OCD), do your best to accommodate them. Disrupting their schedule can be very bad for their development. Keep them to their schedule as much as humanly possible because that schedule helps them to stay focused and functional. Taking the structure away will often cause temper tantrums or irrational behavior that you cannot control. Another aspect of how Tourette s Syndrome affects children is that many children with the Syndrome are often reported to have problems with depression and/or anxiety disorders. This depression or anxiety, while not directly related to Tourette s Syndrome, may be caused by the same neurological disorder that has brought about Tourette s Syndrome. Keep a careful eye on your child to see if he or she is being affected by anxiety or depression. Both anxiety and depression can be crippling to a child. He or she does not want to do anything, fears the unknown, and may 11 Mary Anderson

13 experience mild to severe bodily manifestations of their anxiety or depression. Remember, your child has no control over these symptoms should they occur. He or she cannot be forced into not feeling anxiety and he or she cannot be forced into being happy. Whatever you do, don t make them the center of attention and make them feel that they are being studied. This can be very overwhelming for your child and the extra unwanted attention can increase your child s symptoms. The best thing to do is to take them to a physician who may recommend a psychiatrist. This doctor may prescribe a number of sessions as well as medication to deal with the symptoms. Again, just be careful that you don t get pushed into prescription drugs. The side effects can be very harmful to your child. I believe that parents should try to help their child by changing their child s diet. It has worked for many children. I have spoken to other moms and dads in online forums and there are numerous success stories of how changing their child s diet helped their children immensely. 12 Mary Anderson

14 Chapter 7: How is Tourette s Syndrome Diagnosed? Tourette s Syndrome, specifically in children, is often misdiagnosed. This is because doctors generally prefer to hold off on diagnosing a patient as having Tourette s Syndrome until they have had both motor and vocal tics for at least one year. Family background information or a history of Tourette s in close relatives may modify this diagnosis-waiting period, but you cannot blame a doctor for wanting to be certain that your child has Tourette s before giving that prognosis. This waiting period can be a very trying time, specifically when you are dealing with children that you are certain have this disorder. When Kevin first started displaying symptoms, we were going crazy waiting for the results. I used this time to research Tourette s and speak with other families that shared the same concerns. It is very necessary for doctors to verify this one year of motor or vocal tics in order to be certain that the child does not suffer from some other neurological disorder, so please be patient. Tourette s Syndrome often appears to be very similar to many neurological disorders and psychiatric conditions, which can cause the doctors to make the incorrect diagnosis. A proper Tourette s Syndrome diagnosis often requires neuron imaging, such as through magnetic resonance imaging (MRI), computerized tomography, and EEG scans. This type of testing is often very difficult for a child to undergo as it is frightening, confusing, and may be a bit scary, particularly for young children. It is very important that during this time, you try to remain calm and positive to help your child through it. The manner and behavior which you demonstrate during this trying time will greatly affect how the child will react and respond. It is not uncommon for a child to be diagnosed with Tourette s Syndrome after years from the first symptom. Many times, a family physician and even family members will consider simple and moderate tic symptoms to be considered inconsequential or just a quirk in behavior, not something neurologically influenced. 13 Mary Anderson

15 Many of these minor symptoms in babies and toddlers will be ruled out as potential vision problems or seasonal allergies. It is not until later in the developmental phase that a physician is likely to recognize the symptoms for what they truly represent. Chapter 8: How is Tourette s Syndrome Treated in Children? Some treatments for Tourette s can include prescription drugs. I did not want to use these with my son, Kevin for many reasons. Many doctors are quick to prescribe them, but they never seem to tell you about the terrible side effects of some of these medicines like weight gain, fainting, nausea, loss of bladder control and even a permanent condition called TardiveDyskinesia which produces slithery tongue movements and even more uncontrolled movement of the cheeks, jaw, arms and legs. Because of these side effects and the research I have done, I was determined to find another way to help my son. We experimented with many things, including a prescription drug and the side effects my son experienced were far worse than his tics! After changing his diet, we saw results very quickly. That s why I am sharing my story, so that other families can hopefully avoid prescription drugs. Most parents find that the diet is all they need to help their child s tics disappear, but some other supplemental therapies may also be helpful. Psychotherapy and counselling can assist a person with TS and help his/her family cope, and some behavior therapies can teach the substitution of one tic for another that is more acceptable. The use of relaxation techniques and/or biofeedback may serve to alleviate stress reactions that cause tics to increase. Be supportive and caring so that you can help the child through these difficult times. P.S. My doctor was sceptical when I informed him how diet modification has helped in getting rid of Kevin s tics. However, it is true that the technique has worked favourably for me and also for hundreds of families facing the same situation. It is alright if it does not work the first time, for still there are chances that it may help. A point to note in this regard is to check if your child is still having the food removed from the diet when at school or at a friend s house. In such cases, the tics will persist or if they had already been gone, will return. 14 Mary Anderson

16 Don t fret, for at some point in time the child will himself give up the food he is not supposed to have and you will no longer need to enforce the modified diet. Determine the best educational setting for a child with Tourette s The symptoms most commonly associated with Tourette s Syndrome, the physical tics, verbal tics, and other secondary neurological disorders such as ADHD, OCD, and learning disabilities, can adversely affect a child's academic performance and capacity for social adjustment. Many counselors believe that a child with this Syndrome should only be placed into a traditional classroom only once they have completed comprehensive assessments to determine their specific needs and abilities. Many students with Tourette s Syndrome will require tutoring, as well as smaller classrooms. In some rare cases, children who suffer severely from Tourette s Syndrome may require special schools. Regardless of the severity of the Syndrome, it is very important that all children with Tourette s Syndrome need to be in a very tolerant and compassion classroom setting. Without the encouragement to work to their full potential, many children with Tourette s Syndrome will be unable to keep up with others of the same grade level. It is very important that a child suffering from Tourette s Syndrome have a very flexible setting and school routine. For instance, many teachers use timed tests in a strict environment. Most children with Tourette s Syndrome cannot handle this type of situation. Timed tests elevate their stress levels and cause them to lose concentration. In addition, since many of these children have learning disabilities, they have trouble reading as swiftly as other students do and so it will take them longer to complete the same assignment. Make sure that your child s teachers are well aware of the Syndrome and make accommodations for your child. A more flexible testing situation can greatly improve the results that a child with Tourette s Syndrome can produce. The child will need more time to read the assignment or test instructions and will need longer quantities of time to complete their work. Instructions for assignments need to be very clear and written out for the child so that he or she will not be relying on memory or on his or her own notations 15 Mary Anderson

17 about the assignment in order to make sure the child works on the right things. The majority of children who suffer from Tourette s Syndrome have IQ levels equal to other general schoolchildren, although many may suffer from some other type of learning disability. It is only when secondary learning disabilities are coupled with an attention deficit disorder that there should be any special educational assistance. It is very important that if the child is experiencing severe tics related to Tourette s Syndrome, they have permission from the teacher or authority to leave the classroom so that the tics do not become overwhelming or embarrassing. This type of flexible learning environment can increase a child's ability to study as well as increase the likelihood of creating a positive social environment for the child. It is crucial that a teacher or tutor who is trying to work with a child that is suffering from Tourette s Syndrome be incredibly patient as well as tolerant. If the child's symptoms or tics somehow affect the safety or privacy of others, it is necessary for the teacher, tutor, or authority figure to implement methods that will work around the problem rather than trying to change it. It is very important to show the child acceptance even if the behavior is unacceptable. Providing short breaks out of the classroom can also be a method of alleviating the stress levels for a child who suffers from severe symptoms related to Tourette s Syndrome. Taking just a short time in a private place to relax can often release tics as well as other symptoms for children, specifically children in a new environment. This private time is also likely to enhance the child's ability to focus on direction as will his schoolwork. The private time is able to increase the child's ability to focus because they are using much less of their willpower trying to suppress tics and other symptoms. This is why it is so important that children be allowed to take tests in a private room, so energy and focus is not expanded through suppression of tics and symptoms during a normally quiet time in the classroom. A comfortable social setting can be very beneficial to a child suffering from Tourette s Syndrome. A teacher or tutor should take the time to work with and educate the other students so that they can better understand Tourette s Syndrome and possibly reduce ridicule and teasing. Through classroom 16 Mary Anderson

18 education, it is more likely that the child afflicted with Tourette s will be able to develop a healthy social structure. Parents of children that suffer with Tourette s Syndrome should preemptively make school counselors and psychologists aware that the child has this condition before enrolling their children. Find out what special programs may be held at the school. You may also want to address the issue, right up front, as to how the school will be able to accommodate your child s particular learning problems and/or tics. Without preparing the school and interviewing them prior to enrolling your child, it is possible that a child's teacher will be unaware of their condition and the school might not make special circumstances and situations to help provide a comforting environment for your child. This type of lack of awareness can lead to many uncomfortable social settings. Most communities have a Tourette s Syndrome Association chapter that can assist in providing adequate information as well as appropriate audiovisual materials for the students and staff of the school that the child will be attending. Accommodate for writing problems The majority of children suffering from Tourette s Syndrome have some type of visual motor integration disorder. With any type of visual motor integration disorder, many tasks that usually require reading materials, processing those materials, and then submitting an answer or opinion become very difficult and incredibly time-consuming. This can also affect a child's ability to copy simple instructions from a blackboard or book onto their own paper. Visual motor integration disorders are also responsible in creating a lack of neatness when completing long assignments or written assignments. This does not necessarily affect only children who suffer from other neurological disorders; this can affect all children with Tourette s Syndrome. Many children who are otherwise incredibly bright and insightful can have a very difficult time completing any school assignment that requires much writing. For parents, teachers, and tutors, this type of learning disability can be very frustrating as it often appears as though the student or child is just too lazy or is unwilling to complete the assignment. This is one reason why dealing with these children requires such great patience and understanding. The specific 17 Mary Anderson

19 learning environments alone are vastly different from what is set up for other children, depending on the severity of the Tourette s Syndrome s symptoms. In reality, the assignment that makes the child appear to be too lazy to complete, is actually an overwhelming task for them to simply record the concepts onto paper. However, many simple accommodations can be applied in order to assist children with these difficulties and help them to better succeed in a classroom and all learning environments. Many parents and teachers have found a great amount of success through simply allowing children to submit homework assignments through assistance, such as a tape-recorded message, having a parent or tutor act as a stenographer, letting the child dictate his or her ideas and concepts, or allowing the child to dictate an entire homework assignment. This gives the child the opportunity to focus more clearly on what he or she has learned rather than trying to focus solely on putting those ideas on paper. Often, teachers have taken this method a step further by moving the assistance into the classroom through assigning a reliable homework partner who is more capable of quickly writing down important notes and assignments that they can later share with the students suffering from Tourette s Syndrome. This method, although very effective, should be worked out discreetly within the classroom to maintain a normal social situation. It is very important that the child suffering would Tourette s Syndrome does not feel different or in any way less adequate than the other students in the classroom. These simple accommodations will result in a much more comfortable and positive atmosphere when writing and will assist in creating a much better social atmosphere for a child suffering from Tourette s Syndrome. Creating a more comfortable atmosphere will improve the overall quantity and quality of the child s work, while also building his or her confidence and decreasing stress levels. I found it extremely helpful to talk with Kevin s teachers regularly to note any progress or setbacks. Once we open the line of communication with all those involved with our children s lives, progress can be made. While sometimes we want to hide from our issues, we need to remind ourselves that nothing can get resolved this way. I suggest you speak with everyone that is involved 18 Mary Anderson

20 with your child, both in school or other activities, so that you form a support group for both you and your child. Accommodate for problems relating to language Many children suffering from Tourette s Syndrome develop specific language problems. One way to assist children in overcoming these language barriers is to try and provide visual input as well as auditory input. As an example, a student should receive oral directions as well as written directions. The combination will give the child a much greater understanding of what is expected of them. It has also been noted that the use of pictures or graphs to help illustrate texts has been quite effective. Children with Tourette s Syndrome do not necessarily have a lower IQ than other children in the classroom, so it is crucial to try and make any accommodation possible to assist them in learning. By giving directions to children with the Syndrome multiple times, and then requesting that the child repeat the instructions, you are ensuring that the child has a better understanding of the assignment and a better understanding of what is expected of them. It is also beneficial to create checklists and have students complete assignments one small portion at a time. Often complex cognitive thinking confuses someone suffering from Tourette s Syndrome. 19 Mary Anderson

21 Chapter 9: Recommendations for Attention Problems It is common for children with TS to also have attention deficit hyperactivity disorder (ADHD), which is manifested by problems with attention span, concentration, distractibility, impulsivity, and motoric hyperactivity. Symptoms of ADHD often occur before TS symptoms and can become worse as the tics develop. Children with ADHD work hard at focusing their attention on a certain subject but are often distracted by activities going on around them. The find it hard to remain still and this may cause problems in school achievement % of students with TS require school intervention services. Children with both TD and ADHD often have serious, long term impairments in school. Simply by seating a child or student directly in front of a teacher at the very front of the room can greatly minimize the amount of visual distraction that the child is likely to endure. Seating the child away from windows, doors, or other areas of distraction can also play a large role in helping the child to remain focused. Allowing the child to working short intense periods with several intermittent breaks can also reduce any attention deficit disorder symptoms. It seems that children with Tourette s who are also experiencing attention deficit disorders seem to enjoy intellectual diversity as a method of teaching. Simply changing tasks frequently and requiring short assignments can accommodate this type of intellectual diversity. Short assignments with frequent updates have proven to be far more effective than traditional homework assignments and can severely reduce classroom misbehavior. Think about the fact that most of us have acquired short attention spans with the change in our culture. Commercials spew out ideas in 60 seconds or less, television shows run for a total of a half hour to an hour in length and take frequent breaks. Your child, whether he or she has or does not have Tourette s, will still be affected by this shift in attention timelines. Think about this when designing activities for your children and when discussing possible accommodations for your child with teachers. It is amazing how much of an effect this type of accommodation can have on a child with Tourette s. 20 Mary Anderson

22 Attention deficits are not only a problem that occurs with children, it may also persist into adulthood. This can lead to job impairments as well. According to a recent study, 70% of children with Tourette's or Chronic Motor Tic Disorder also suffer from ADD or ADHD, the problem being compounded by the fact that most ADHD medication can trigger tic disorder and make it more frequent. An exception is Atomoxetine (Strattera), but you need to consult your pediatrician before giving it to your child. 21 Mary Anderson

23 Chapter 10: Tourette s Syndrome Management There is no set method to successful management of Tourette's Syndrome with children, but the most important tool of management is patience. It is very important for any teacher, tutor, or parent who works with the child to supply that child with an unlimited amount of patience and reassurance. Do not forget to both educate the child as well as the surrounding community as this is a key strategy for maintaining successful Tourette's Syndrome management. However, it is possible (and most commonly recommended) that a healthy dose of reassurance, explanation, comfort, and support are administered by a loving and caring individual. A strong structure, low stress levels, and reassurance can go a long way towards making the child s symptoms subside. Cognitive behavioral therapy is used as one treatment or therapy method for many children who suffer from Tourette's Syndrome, especially when obsessive-compulsive disorder tendencies are also present. Cognitive behavioral therapy is a psychotherapy based on modifying beliefs and behaviors. The desired effect of successful cognitive behavioral therapy is to influence disturbed emotions; in the case of Tourette s Syndrome patients, it is often used as a form of relaxation to reduce stress. The true benefit of cognitive behavioral therapy is that it is something you can practice at home or in the classroom with a child suffering from Tourette s Syndrome. The main objective of cognitive behavioral therapy is to identify any regression to unhealthy and dysfunctional thoughts or emotions. It is also important for a patient who is undergoing cognitive behavioral therapy to understand why these thoughts and emotions are unhealthy or dysfunctional. A significant aspect of cognitive therapy focuses on eliminating irrational beliefs. Albert Ellis published a study referring to the ABCs technique of irrational beliefs. The first step of this technique involves simply analyzing the process by which a child has developed very irrational beliefs. The first step in these aspects of the therapy is activating symptoms in an advance or objective situation. This aspect is to set up a situation or setting that will ultimately lead to a high emotional response or possibly, a negative dysfunctional thought process. It is 22 Mary Anderson

24 through this that you can further identify the causes of such unhealthy thinking. The second step in this therapy requires having a child suffering from Tourette s Syndrome to write down any negative thoughts that occur to him or her throughout the day. They should be kept in the form of a diary or journal and really needs to include any negative thoughts, dreams, or fears. It is also suggested that a parent of a child suffering from Tourette s Syndrome keep a journal in order to keep track of any misbehavior or inappropriate comments that he or she may make. This will help not only in identify the belief structure behind any depression, but it will also help the parent better understand and associate with their child. The third and final step of this therapy is to determine whether child understands what the consequences of such disturbed negative feelings are and how the dysfunctional behavior affects functionality. It is also in this final step that a parent and child should attempt to determine what consequences have come from the actions recorded in the child's or parents journal(s). Granted, in most parent-child relationships, it would be unconscionable for you to read your child s diary or journal. This is not the same in a parent-child relationship where the child has Tourette s Syndrome. It is vitally important for the parent to take the time to read the child s journal or diary and understand the state where he or she is currently. This means emotionally, socially, and physically. You can get a better understanding of what the child is undergoing if you spend the time to read his or her journal or diary. Cognitive behavioral therapy can take months or years. Many times, cognitive behavioral therapy will take several weeks or even several months in order to begin to show some sign of progress. Once they can start to control the symptoms, this is called habit reversal and has proven to be quite an effective treatment for Tourette s. 23 Mary Anderson

25 Chapter 11: Famous People with TS Neurologist Oliver Sacks uses the pseudonym Carl Bennett to describe reallife Canadian Mort Doran, M.D., a pilot and surgeon with severe TS, whose tics remit almost completely while he is performing surgery. Howard Ahmanson, Jr, an American millionaire philanthropist who funds Christian causes, has Tourette's. Brad Cohen is an award-winning teacher and author who has Tourette s. Recognized athletes and figures in the sports world diagnosed with Tourette's syndrome include: Mahmoud Abdul-Rauf (formerly Chris Jackson), a former NBA player; Eric Bernotas, a three-time U.S. skeleton champion who made his Olympics debut in 2006; Jim Eisenreich, a former major league baseball player; Tim Howard, a goalkeeper for Manchester United Football Club (currently on loan to Everton F.C); Mike Johnston, a relief pitcher formerly on the roster for the Pittsburgh Pirates; Jeremy Stenberg, a motocross rider nicknamed "Twitch"; and NASCAR Busch Series driver Steve Wallace, son of racing legend Rusty Wallace. Recognized musicians with Tourette's syndrome include: Tobias Picker, a composer Nick Tatham, a singer/songwriter 24 Mary Anderson

26 Michael Wolff, a jazz musician. Author and neurologist Oliver Sacks describes the case of a drummer with TS, who uses his tics to give him a certain 'flair' or 'special sound' to his drumming. Concluding Thoughts There are many resources available for you and your child with Tourette s Syndrome. Reach out to your community and utilize as many resources as you can find to help you and your child live a normal, loving and welcoming social life. Build upon your child s self-esteem, provide environments were the child feels comfortable, and adjust the work required from a child with Tourette s so that he or she will be best able to deal with the circumstances. Overall, just stay positive. Keep an open mind, stay focused, and spend as much happy time with your child as possible. The more love, compassion, support, and reinforcement you can show, the more your child will live a good, long, social, and happy life. Always remember, that you are not alone. We can all work together to overcome the challenges of Tourette s. 25 Mary Anderson